It Takes Villages

THE Trip!

2012-02-18T23:50:00.001-08:00

What a trip! William's wish to go to Harry Potter World was fulfilled! And the Make-A-Wish Foundation is Ah-Mazing!

After a fun-filled week at more theme parks than I care to remember, we are finally settling back into our routines. We flew home almost 2 weeks ago on Monday, arriving after midnight, but in time to catch a few hours of shut eye before being back at the hospital Tuesday morning for another round of chemo-6 days. Luckily our kids were still on east coast time and woke up bright and early. Ryan and I weren't so lucky even if our bodies were on east coast time. We were exhausted!!! But it was all worth it! William was radiant. I haven't seen him feel or look that good for that many consecutive days for a very long time. But the recent completion of chemo has drained the energy yet again. Although he still looks good and is happy, happy, happy!

The trip began early in the morning with a 5am knock on the door from the limo service to the airport. The boys loved it and were only slightly disappointed that the limo was white. They have this funny belief that the Jonas Brothers are in all black limos and Hannah Montana is in white limos! They got over it pretty fast and we piled in. The flights were good and almost uneventful. The pilot let the boys explore the cockpit and the flight attendants handed out extra cookies. The only significant event was when Soren tried to remove a lid from a Play-doh container and one of his bottom front teeth flew onto the chair. It wasn't loose. It was his first tooth. His urge to cry was quickly curbed as we gushed over the exciting fact that he was the first boy in our family to loose a tooth on a plane! There's always something to be said for feeling a little special.

Our resort: Give Kids the World! Wow! And the wow isn't because it was 5 star amazing, but because of the people who work and volunteer there and the special attention they give to making it magical for the Wish Child and their whole family. Several times, just walking around the grounds I got a little teary just thinking about how amazing everything was and the impact of it all on our lives. All of the boys got a special pillow from the Pillow Tree in the Castle of Miracles, the wish fairy left presents on our kitchen table each day, William got a "star" in the star tower of the Castle of Miracles, various characters came each day to greet the kids, pirate party at the pool, Super Bowl party at the pool with a giant movie screen, popcorn, cotton candy, snow cones, hot dogs, etc., all-you-can-eat ice cream parlor, breakfast each day in the gingerbread house, horseback riding, carousel rides, train rides, mini-golf, remote control boats, fishing, arcade.... should I stop? And this was just at the resort. I think the kids were shocked when they asked to do or eat everything and we always said YES!

Harry Potter World was William's favorite! And of course, we went there first. The Hogwartz Castle ride was a hit! Butter beer wasn't appreciated by all---a little on the too sweet side for some of us, but still a yummy treat. The Hippogriff ride was ridden over and over again by the four younger boys---William is a little too fragile for that much jostling. And Ollivander's wand shop was pure magic. Really! Ask Soren (5yrs old). We hit Harry Potter World first thing in the morning and spent a few hours there. Then we wandered over to Island's of Adventure, another area at Universal Studios, and spent the remaining part of the day there until heading back to Harry Potter World again to finish out the last hour of the evening. We loved meeting up with some Hadfield cousins from VA who coincidentally were there on vacation too! So fun and always good to have a few extra adults and teenagers to tag team the boys!

A bit of history for those of you who may not be Harry Potter aficionados. Ollivander's is the name of the wand shop where all wizards go to buy their wands before entering The Hogwartz School of Wizardry. However, you don't pick the wand, the wand picks you. At the park, wands are sold in the tourist shops and at kiosks in the park for a quick souvenier purchase, but if you are willing to stand in a long line, you can actually go into the portion with Ollivander himself and watch a small production with a lucky audience member and witness a wand picking its master. Our return in the evening yielded very small lines so we got in line. William's lovely bald head and special blue button designating him a Wish Child earned him the coveted role of lucky audience member. The room was so authentic to the movie, the Ollivander actor was fantastic, and the rigged room made every small child a believer in magic. William told me before entering that he didn't want a wand because he already has one that he loves that was made by the father of a family friend. It is very cool. However, after the whole production, we told him he could have another if he wanted. He did. His brother's commented, "William is so lucky because he got a wand that does real magic!" They love the wands they picked too.

We also enjoyed time at Disney World hitting the Magic Kingdom, Animal Kingdom, Disney Hollywood Studios, Epcot, and Sea World. Some of the highlights were the Aerosmith roller coaster which marked William's first "upside down" ride, the stunt car show, more upside down roller coasters at Sea World, the Lion King show, feeding the dolphins, the sea otter show, the Test Track at Epcot, any and all log rides. We packed lots into each day, but we tried to stay at the pace of the boys. We never made it to the parks before 10am, but always stayed until closing. William's special blue button was great. It got all of us in special entrances, front row seats, fast pass lines, and often let us ride our favorite rides over and over again without getting off. During a dramatic melt down by Cameron for some reason I can't remember, an employee stopped to chat with William about what things he was enjoying and tried to cheer Cameron up without success. Then she marched them over to the ice cream counter and gave them all ice cream cones. What a treat and kind gesture.

The flights home were long and late, but we made it into our beds by 12:30am, happy and exhausted.

Here's a slideshow because I haven't found enough time to do much photo organizing yet. I tried to set it to music, but it was giving me enough headaches. I gave up so you'll have to settle for boring silence. I haven't downloaded any of our video and we just barely got all the laundry of the past 2 weeks finally put away today!

William's week in the hospital for chemo right after we came back was fairly uneventful. He started getting nauseated on day 4 of 5. He came home feeling pretty crummy for a couple days, but is bouncing back just in time for his counts to drop. He's probably neutropenic by now and he's probably due for blood and platelet transfusions (he was close and trending down on Thursday). Due to the Monday holiday, he's not due back into the clinic until Tuesday. We'll see if he makes it until then. We may be making a trip to the 6th floor for some blood work a little sooner.

Update: Got the slideshow up because we spent Sunday in the hospital getting blood and platelets. He's not neutropenic, but he's close. Not sure if he's on his way up or down.

Perfectly Scripted Pinewood Derby

2012-02-08T16:22:00.000-08:00

Our biggest concern with this year's derby, other than just finishing both cars, was how do we deal with hurt feelings if one car ends up being better than the other. The root of this problem stems from Clark having a hard time understanding why William seems to get "special" attention. All the kids feel this way, but Clark just seems to vocalize it and dwell on it more often. He is constantly upset because William comes home from the hospital with various toys and trinkets or he finds out that William had Jamba Juice or In-N-Out for lunch after his doctor appointments. We try our best to be sensitive to this and make special efforts to make sure each of our children feels special, but it's hard and we're walking a fine line. I know this is true in all families, in all situations, but it just feels exacerbated with this whole cancer thing. So this derby thing raised some awareness as to how we were going to make sure they both come out feeling like winners. (I'm all for kids learning how to be winners and losers, but I didn't feel like teaching it that day).


The carving of the car and the outfit to do it!


The boys did a great job designing, carving, and painting their cars. We tried to give them some sense of ownership before we stepped in to help/finish.

The finished products. William's is the yellow and black one and Clark's is the American flag one.

We finished the cars just in time. Actually, we were a bit late, but we figured we'd just be the last ones to be weighed in. Both looked great and I got a new corded drill to aid the axle prep! I love power tools more than my husband! (Probably because I use them more often!) The boys and cars did great! I couldn't have scripted the outcome more perfectly! William won 1st place for the Webelos (not counting the 2 cars that won first and second overall) and Clark won 3rd place over all. It was perfect because both boys won several races, but Clark won more. Both were sincerely happy for each other! And so were we! Whew!

The excitement of winning a trophy! Always with a flare for drama!

Well done!

A little toned downed, but equally thrilled!


Brotherly ~~love~~ competition!

p.s. Yes, we took THE trip! Details to come as soon as I/we recover!

Wishes Do Come True

2012-01-23T09:52:00.000-08:00

On Friday afternoon, Make-A-Wish Foundation threw a party at our home to officially grant William his wish! What an amazing organization! He made his wish back in September right as we were finishing treatment and planning on a life of remission. He is a huge Harry Potter fan and wished to go to Harry Potter World/ Disney World in Orlando, FL. The plan was to go during Spring Break, but in December, under advice from our doctors, we decided to put a rush on his wish in an effort to make sure he got to enjoy the trip. So we have carefully calendared. Since his chemo and recovery are fairly predictable right now and he isn't experiencing too many "unexpecteds" at the moment, it all makes sense. His chemo will be delayed a week in hopes that he'll be at his peak of feeling great. We are so excited, but what I love even more is the fact that my kids have no real idea how amazing this trip will be. I just keep thinking about the 75+ degree weather right now while I'm suffering from a case of "wimpy Californian" during the few weeks of actual winter weather around here.

Some of the highlights of the trip will be a limo ride to and from our home and airport, 24 hour, all-you-can-eat-ice cream parlor at our resort. (Our resort is called "Give Kids the World" and it is a resort only for Make-A-Wish kids and their families.) And of course, all the fun a kid can pack into a week with tickets to every attraction in the vicinity.

We are so grateful to the generosity of the Make-A-Wish Foundation, the many people who donate money to the organization to make these wishes a reality, and their amazing team of volunteers!!! Thank you! Thank you! Thank you! We can't wait to post pictures of our trip!

In other news, William had a pretty uneventful week. He is not following his trends with his counts as he seems to hit an ANC of 0 a few days sooner than the previous chemo cycle. This week he seemed to stay at 0 a little longer than before, but he's staying out of the hospital and we can't ask for much more. Besides, I figure the sooner he cycles down, the sooner he cycles up and then he has more time feeling good while he waits for the next chemo cycle to start. Right? It makes sense to me when I don't try to factor in the rest of the what ifs. He received blood and platelet transfusions on Thursday which helped give him a boost of energy for Friday's Wish party. We are hoping the TPN and lipids are working their magic with his weight. He's had some aches and pains in his abdomen this week and tells me it's not nausea or gas. He isn't requesting pain meds and he says it comes and goes quickly. This makes me crazy. I try not to let my anxiety get the best of me or let my mind go to places it shouldn't, but the thought of the cancer speeding up it's growth is never far away.

William and Clark are gearing up for the Pinewood Derby this week. It is mild torture trying to get 2 cars done and then try to figure out how we are going to manage the emotions if one car ends up being significantly better than the other. Ahhhh. And we are cringing for next year's races because the twins will turn 8 right before the Derby and we'll have 4 cars to make!

Back on the Weight Wagon

2012-01-16T22:41:00.000-08:00

Chemotherapy went as planned---Monday thru Saturday. However, he came home with a new appendage of sorts: TPN and lipids (I.V. nutrition). He'll be hooked up to pumps for TPN and lipids at night for 12 hours to help give his body a boost. This is all a result of his weight hitting an all-time low: 49 lbs! He was about 64 lbs. and 1.5 inches shorter a year and a half ago at original diagnosis and he's always struggled to get back up to that weight. Weight and appetite loss are common side effects of radiation and chemotherapy, but he just can't afford to fluctuate down anymore, especial when he's lost almost 25% of his already thin body weight. At dinner he said, "Why can't there be more commercials about how to gain weight? Everything on TV is about how to lose weight. That doesn't help me!"

Today's appetite was pretty small. One of the important things with TPN is to keep him eating by mouth. His body can only get the I.V. nutrition for so long before it starts taking a negative toll on his other organs. He's felt a little nauseated from time to time, but we are trying to wean off the Zofran if possible. Tonight as I was saying prayers with him, he squeezed my hand and said he needed a bucket. Luckily we keep one right next to the bed. He threw up all of what little dinner he ate 2 hours earlier. After getting him cleaned up and tucked back into bed, he told me how tired he is of all this. I told him how much I loved him and how strong and amazing he is and that his Heavenly Father loves him so much and knows how hard this is for him. He continued to smile. I told him he was a golden warrior and he said, "Thank you for saying that because I feel like I know I am." Oh, how I love that big, strong spirit in that little boy body.

They Made It To 7!!!

2012-01-12T14:16:00.000-08:00

Nathan Cameron

Seven years ago, your birth ended my 6 weeks of hospital bed rest. I haven't rested since! Having twins is such a joy and to watch two little people be so alike and different at the same time is amazing. Just when we think we have you pegged, you switch it up on us. You two boys keep us laughing at all your silly antics. We love how sweet and tender you both can be and rough and tumble the next moment. Cameron, your agility and carefree personality keep us on our toes. Nathan, your deep thinking and memory for numbers and details remind us we're getting old. We love how you each are developing individuality, but occasionally want to still dress alike to trick your teacher! We love watching you both become excellent readers and be avid and imaginative Lego builders. Your appetites, especially you, Cameron, are making me nervous for the teenage years if this what it's like at 7! We are so glad you are each a part of our family. We love you!

Happy Birthday to my most favorite set of twins!

Cameron and Nathan! You made it to 7!

Make Today Count

2012-01-08T22:57:00.000-08:00

Quick Recap of the holidays

Round 4 or 13 of chemotherapy (depending how you count) the week beforeChristmas
Home Christmas Eve morning and William was so excited to be home, he called as he drove intothe neighborhood to have everyone come outside to be his welcoming committee.Love it!
Relaxing Christmas day. Attended church, opened presents,ate good food.
Gift highlights were Legos. What else do boys want/need? Andthe tetherball that I’m proud to say Lisa and I made by pouring concrete in anold tire. Actually, I poured the concrete and she supervised and took picturesof who dressed in the ugliest grubbies. Everyone needs a friend with whom topour concrete, right?
My parents and brother arrived the day after Christmas andstayed for a week. Wonderful. Filled our buckets.
Another brother and sister and their spouses and childrencame to party Thurs.-Sat. to make fun family memories and celebrate my mother’s60^th b-day. Good times!
~~Slept in~~. Got up early M-F for 2.5 weeks to be out the door by7:20am for abdominal radiation.
Blood and platelet transfusion gave William an extra boost despite his ANC hitting 0, but it didn't stop him and all the uncles/grandpa and boy cousins from attending a Kings vs. Bulls NBA basketballgame that same evening to watch Jimmer. He did go wearing a mask and hand sanitizer in hispockets. Hospital admit averted. Whew!
Celebrated my mother’s birthday on New Year’s Eve at abounce house gym. Debateable whether the children or adults had more fun. The adults came away with more injuries (always the competitive Bennions).William engaged in more physical activity than I’ve seen in over a year. Bouncehouse jumping should be prescribed medicine for cancer kids!

We’re getting back into the swing of schedules and unpredictability.Last weekend, William experienced some intense abdominal pain, but a littlemorphine seemed to do the trick. This can be a radiation side effect, but inthe back of my mind I always wonder if the tumors are growing. Tuesday, whileat the clinic right after radiation, the pain started again. Of course Icleaned out my purse of his pain meds that morning. The nurse gave him someTylenol and he promptly threw up all over himself and soaked everything he waswearing. Then he declared he felt much better! I hardly flinch at vomit anymore. Ahh, the things that change us.

The significant event was Wednesday's CT scans to assess the progress oftumor growth. Good news. The tumors appear to have responded and decreased in size.This gives us two options: 1) continue with the same chemo regimen of Etoposide (VP 16) andifosfamide until the tumors stop responding or 2) switch to temozolomide andirinotecan, two chemotherapies his body hasn't been exposed to yet. The doctors will discuss the options and let us know what theyrecommend when we show up for admit on Monday morning. The upside to option 2is the temozolomide is an oral pill and the irinotecan can be given outpatient.Otherwise, we’re just planning on a M-Sat hospital stay this week.

I recently read the following quote by Pres. Thomas S.Monson on another blog of a family dealing with cancer too: “Time is a gift, atreasure not to be put aside for the future but to be used wisely in thepresent.” Ryan and I have discussed at length how to create more meaningfulrelationships and memories as a family. We want to make each day count. Takingthe idea from this other blog, I planned a Family Home Evening lesson last weekon this topic, Make Today Count. We discussed and listed many things we can doas a family each day to make the days better. Some things are daily activitiessuch as family prayer and scripture study, speaking kindly, serving oneanother, saying “I love you” often, and giving lots of hugs. Other things areactivities we want to increase like going to the beach, family bike rides,playing board games. Some things are easy and are already part of our regularroutine, but others will take daily reminders. Our hope is to strengthen ourfamily through this trial. We know good comes from adversity, but it’s notalways immediate or automatic. All things worthwhile take hard work andpatience. But at the end of each day, no matter how stressed we feel, how cranky the boys are, or how physically and emotionally exhausted we are, I hope we love each other a little more because we made today count.

2012-01-06T21:17:00.000-08:00

Blog post to come soon. Things are fine. I do have updates. I haven't abandoned the blog, but I am currently valuing family time, daily chores, and sleep more than the blog. Go figure. Happy New Year!

2011-12-20T14:30:00.000-08:00

This past week contained quite the roller coaster of emotions. We are truly touched and humbled by the continuous outpouring of thoughtfulness, kindness, service, well-wishes, concern, love, and support. Thank you! Thank you! We know we may never have the opportunity to personally thank some of you, but know that you have impacted our family for good and it is so appreciated.

During a conversation this past week about ongoing treatment planning, it became evident that I obviously didn't know about recent findings from the post surgery CT scan done earlier this month for radiation mapping purposes. The scan revealed possible new tumor growth in his chest and right abdomen. It is not completely evident if it is really new growth or just something they didn't see before. It came as quite the shock because the doctors forgot to tell us about it. We never thought to follow up on the scan because we weren't expecting any information from it. It was supposed to be just for mapping. I suppose we could have been angry at such an oversight, but we are grateful for the happy week we had without added stress and anxiety. Knowing or not knowing didn't change any action, it just made the time less stressful. At this point, treatment isn't being changed. The follow-up scans that occur after every 2 chemo cycles will be done the first week of January. At that point, more information will hopefully be on the table and further decisions can be made.

Round 4 of chemo started Monday. It should be fairly uneventful. Hopefully. He started radiation on his abdomen Monday morning and he will be transported by ambulance each day for radiation while in the hospital. Nothing like mixing it up. Now we'll see if I can do something about the 8am radiation appointment time since it necessitates a 7:20 am transport pick up. Ugh. William should return home on the 24th, just in time to celebrate Christmas Eve as a family. We are so grateful Ryan's mom could come entertain the boys this week, especially since they are all out of school.

The hospital and holidays are ~~never~~ sometimes a nice combination. When William got off the elevator onto the floor for admittance, the hallway and playroom were full of police officers, a Santa, and carts full of boxes with presents for children. William scored a cool remote control car that is keeping him up and out of bed, racing it up and down the hallways.

Today an older brother of one of the patients brought 30 giant teddy bears and lots of smaller ones for all the pediatric patients. William scored a giant one. I'm not sure how I feel about it since I can't think of where we'll put it, but I know the boys will all be excited. And sweet William said, "I know we really don't need it, but my brothers will all love sharing it."

Inspiration or Desperation

2011-12-12T23:21:00.000-08:00

I often wonder if various life events are a result of inspiration or desperation. A last minute weekday pizza dinner is a perfect example of desperation, but I could argue the whole concept of "Take-n-Bake" or "Hot-n-Ready" being pure genius and inspiration. But we all know it's all about lack of planning, hungry children, and worn out parents. Choosing to sell our first little starter home and buy a larger home while the market was sinking proved to be inspired because I don't know where all our frequent house guests would have slept or what their poor quality of accommodations would have been during this tumultuous past 18 months. I have a strong belief that more often than not, inspiration plays a role in even the small things.

A couple months ago, as we were faced with the reality of the cancer returning, Ryan and I sat down and discussed how we were going to cope as a family all over again. What would we do the same? We would continue to maintain routines and a sense of normalcy with all our children whenever possible. We would continue to be hopeful and faithful and optimistic and strong. We would look for opportunities to increase family bonds. What would we do differently? We would simplify our lives even more. We would improve William's quality of life as much as possible, even if it meant taking some risks that we weren't willing to take the first time (i.e. attend school). Soccer season was in full force as we were contemplating simplifying. We decided we would take a break from all organized sports so we could have dinner together each night and have weekends free for family fun. We have enough boys to create our own teams anyhow! We want to make each day count.

William made it home last Tuesday after 21 days in the hospital. Wow, it felt so good to all sleep under the same roof that night. Wednesday morning, William and I got up bright and early and headed back downtown for his radiation appointment on his ankle. (His last ankle radiation is tomorrow morning). Then we headed home, packed our bags, gathered our snow gear, checked the kids out of school early, and headed up to Tahoe for a quick overnight getaway. (We had to be home Thursday afternoon for his next radiation appointment). It was wonderful...too short, but wonderful. A huge thank you to my aunt and uncle for such a gift! We all enjoyed some pool and hot tub time before dinner---emphasis on hot tub. Even William managed to make it work. Dinner was a family favorite: Fondue! It's all about the weapon-like utensils. A movie, popcorn, hot chocolate, and all snuggled up together on the bed was a perfect, relaxing evening after a long month of stress and separation. Thursday morning we had a big breakfast (trying to pack calories on William's little body), donned our snow gear, packed up the car, and headed to the Heavenly Gondola to have an adventure and enjoy a spectacular view. Ryan and I had second thoughts when we saw the price and calculated the cost for our entire family. After a few gasps and gags, we knew we had to do it because it is what we promised the boys and what we wanted to do as a family. $170 for tickets and another $30 for hot chocolate, hearing the boys squeal with excitement and tell us it was the best vacation ever--even better than Disneyland (I think they got a little carried away) made it priceless. The views were spectacular and the snow wheelchair was sweet. The man-made snow was disappointing for snowball and snowman making, but Ryan managed to find some deep snow for the boys to feel adventurous. We left and headed straight back to the hospital in Sacramento for William's radiation appointment and made it with not a minute to spare.

We were desperate for some happy, family time. Inspiration saw our need for a break and convinced us that we could take off mid-week, spur-of-the-moment, and just find peace and love with one another. (notice I didn't say quiet!)

Records and Riding in Ambulances with a Boy

2011-12-03T19:00:00.000-08:00

Not including the 26-day stint in S.F. for transplant, William has set a personal record of consecutive days in the hospital: 18 and counting. And it's getting a little old. Okay, big old!

The PICU kicked him out on Monday. That's a good kind of eviction. The floor and his regular nurses anxiously awaited his return. Floor is hospital lingo for the regular rooms. His favorite night nurse even had dibs on him as soon as he got out. Since then it's been a bit of a holding pattern all week, waiting for the green light from the surgeon and oncologists to start chemo---the main issue being the periodic spiking of low grade fevers. Thankfully, blood cultures remain negative. Then his left ankle took a turn for the worse after a heroic late night walk around the floor on Monday night to show off his rapid recovery. The following day he was in so much pain he wouldn't let anyone touch it. The physical therapist put him on non-weight bearing status until further investigation. An x-ray on Wednesday revealed his ankle tumor getting bigger. The surgeon and oncologists agreed the fevers were likely due to the effusion and junk still in both lungs. Something that only time and increased activity will truly remedy. So the combination of the increased tumor growth and determined fever source, chemo began Thursday night. We cheered! Who cheers for chemo? We do. Because that means we can actually estimate the remaining days in the hospital. Five days of chemo will hopefully earn us a get out of ~~jail~~ hospital card for free. (We won't talk about how much a 3 week stay which included major surgery, 11 days in the PICU, chemotherapy... really costs!)

Other very noteworthy news: William took an ambulance ride! It was his first and what a nice change of pace that was. Sound crazy? Let me explain. In an effort to aggressively go after his tumors, William will be undergoing radiation and chemotherapy at the same time. The radiology oncology center is at the new hospital. We are stuck at the old hospital (there are other adjectives I could use for physical condition of this hospital). This necessitates an ambulance transport each day for radiation. Radiation will be on his left ankle for now in order to let his abdomen heal a little more. The next round of chemo will include the abdomen radiation. On Friday, William had his simulation appointment where they do all the measurements, radiation calculations, foot positioning mold, and tattoos. Yes, although last time was unpleasant, I let him get four more tattoos. But I'm holding to my word that he's only allowed to get dots!

William had a great time. Our paramedics and nurse were lots of fun and the paramedics even turned on the lights and siren for him.

William is doing a great job with his physical therapy. He's is a wonder with a walker! And if you saw his biceps, you'd be impressed he even has strength to hold himself up! The kid is skinny, skinny!

Tuesday is our anticipated freedom day. If all things go as planned, we'll be able to leave the hospital and go straight to radiation and then home. (And should also make it home in time to do school pick ups!) I even scheduled his radiation appointment time on Wednesday to be first thing in the morning and Thursday's appointment to be the last of the day so we can sneak our family up to Tahoe for 2 days and a night. If I could, I'd even schedule a fresh snowfall up there for some sledding, but I won't push our luck. We are all so very, very anxious to just be together as a family and enjoy some peace and quiet.

So if we must set records, we hope we can find some things to celebrate. I think heading home is reason enough to always celebrate. May the next few days go exactly as anticipated...fingers crossed with a sarcastic grin, and hopeful heart.

Boring Patient Means Good Patient

2011-11-27T13:33:00.001-08:00

William is getting closer and closer to being a boring patient for the PICU doctors. He was able to get out of bed twice yesterday to make it a few steps to the unique toilet that folds out of the wall in the room (kind of like a murphy bed, but think camping trailer classy). He also spent a couple hours sitting in a chair today. All good progress and no trivial undertaking with such a big abdominal surgery. Hopefully the NG tube in his nose that is draining his stomach will come out today. He continues to get IV nutrition, but his system should be recovered enough to start drinking today. He has lost weight since he hasn't been able to eat for the last 5 days, so he is hoping a cheeseburger and fries are in his near future, as well as a real Thanksgiving Dinner. Ryan has enjoyed some good quality time with William at the hospital, and William was feeling good enough to play Battleship, Jenga, and War.

We're very grateful for all the help we've received from friends and family, and for being watched over by a loving Heavenly Father. One of the scriptures William has enjoyed reading this week in the hospital from the Book of Mormon is in Alma Chapter 37, verses 35-37: "O, remember my son, and learn wisdom in thy youth; yea, learn in thy youth to keep the commandments of God. Yea, and cry unto God for all thy support; yea, let all thy doings be unto the Lord, and whithersoever thou goest let it be in the Lord; yea, let the affections of thy heart be placed upon the Lord forever. Counsel with the Lord in all thy doings, and he will direct thee for good; yea, when thou liest down at night lie down unto the Lord, that he may watch over you in your sleep; and when thou risest in the morning let thy heart be full of thanks unto God; and if ye do these things, ye shall be lifted up at the last day."

Ryan wrote the above portion. Now I'm on hospital duty and thought I'd add a quick update and some pictures.

The NG tube just came out! He was a trooper and only insisted on an extra bolus of Dilaudid and some Benedryl to help him relax. Usually he insists on the good stuff, like Ativan and Versed. Oh my, the kid and his knowledge of narcotics! Next step: sipping water. Still waiting on that one.

I couldn't resist posting this one! This was taken Sunday afternoon, 3 days before he was admitted for this wild ride.

Just before going into surgery

Day after surgery. He insisted on a visit from Hazel!

Brave Warrior!The tape on the nose is holding his NG tube in place. Now that's gone!

The Road to Recovery

2011-11-25T08:22:00.001-08:00

Phenomenal, excellent, and successful are the words being used to describe William's recovery and surgery. We are truly thankful.

Wednesday morning, a little after 12 hours post surgery, William's ventilator was removed. The surgeon had anticipated he would be on the ventilator for at least 24 hours, if not more. He was assigned 2 nurses during the night after surgery and during the middle of the night, one of the nurses had to go find something else to do since he was doing so great!

Thursday was a day of tubes. They removed all arterial I.V. lines, his chest tube, and foley catheter. He was a champ---especially since line placements and removals are his least favorite things. He'd pick a shot over any of those. He still has an NG tube up his nose to drain his stomach since his bowels and stomach are still asleep after such a long and action-packed surgery. He also continues to be on oxygen, but at a low rate. Last night he was started on TPN (I.V. nutrition). His pain and breathing exercises are the main items of attention. His pain is controlled with a constant baseline dose and a PCA button he can push any time he needs a little extra boost. His lungs are showing a little fluid build up, but that can be expected after all the fluids he received during surgery.

Surgery tidbits:

lost 4000mls of blood. That's 4 liters.
received 12 adult-sized units of blood
received 4 units of platelets
received 5 units of FFP (fresh frozen plasma)
received 1 jumbo cryoprecipitate
received 1 unit of factor VII

The above mentioned blood products that sound foreign to most of you are all to aid in the clotting process. I did a little googling of the vocabulary and got a better sense of how severe the bleeding was during surgery and now understand a little better why the surgeon and anesthesiologist looked particularly harried after surgery. Ryan and I saw it in their eyes after surgery when they told us how it all went. We are grateful we didn't get periodic updates during the surgery because we would have been worried sick if we had know what was happening.

Today we also learned the pathology on William's tumor. It showed most of the tissue in the tumor was removed was dead, or necrotic, in response to the last 2 rounds of chemotherapy. As soon as he recovers from surgery, which could be as soon as the middle of next week, he will start radiation on his abdomen and ankle 5 days a week for 3 weeks and will also continue to get chemotherapy at the same time. We'll see how the details unfold. In the meantime, William continues to improve a bit each day. It has been quite a week and we are extremely grateful for his progress and good spirits.

Post-surgery Update

2011-11-22T22:16:00.000-08:00

Friend Lisa here. First, the update on William.

Here is the text I got from Julie earlier:

Done. 85% of everything removed. Surgeon had choice expletives** for how she felt about the tumor! She's awesome and we love her honesty. Surgery was rough and she had to make some tough calls at times, but felt she was as aggressive as she could be and keep him alive. Bleeding was a major issue and he was treated as a trauma patient several times. He got 12 adult sized blood units (3x more than anticipated and more than twice his body's volume). The smaller tumors were just mush and she scooped out as much as possible. His original horizontal scar was reopened and an additional vertical one was made from sternum down to the base of his abdomen. He is on a ventilator and will be heavily sedated be for a few days. We are relieved and grateful that so much was debulked. She took a picture for me and it's impressive. I'll have to think about posting on the blog because it's a nasty looking
bugger. Perhaps just let me know if you want to see it and I'll shoot you an email.

I can't wait to see the photos! I just got off the phone with Julie. She and Ryan are with William in his room. As we talked, she was eating fries from Jack's Urban Eats and telling me about the wonderful lunch they had at the French restaurant near the hospital. I am glad they are taking care of themselves today. Julie's mom flew in last night and I got to talk with her and Julie until far too late in the night. She is so wonderful and I know it helps Ryan and Julie knowing that the boys are in such loving hands.

Thank you all for your blog comments, Facebook comments, and your thoughts and prayers; they mean so much to Julie and Ryan.

**And Julie told me which expletives were used by Will's surgeon and I can verify they were all appropriately used.

Surgery: A Go

2011-11-22T07:35:00.001-08:00

William looked really good yesterday. He was pleasant and happy, took a few walks around the PICU and anxiously counted down the minutes until his best friend, James, arrived to hang out. He was a few minutes late and reminded him of that fact! We left them alone to play their video games and Ryan and I and Lisa headed out for a fresh air walk to Sellands to eat (a walk is mandatory to counter balance the deliciousness of their food) and discuss the meeting with our surgeon. Without reminding, they remembered to do William's breathing treatment he does every hour and even set their itouches to time it for 5 minutes. Such good boys!

Surgeon's meeting:

She'll do it. She has to do it. This is not one she can delay until after Thanksgiving.
Physically he looks strong enough: Sitting up in bed, talking, O2 set fairly low, continued progress with respiratory therapist to pop open the bronchioles of his left lung.
His abdomen continues to swell larger.
Given the nature and rate of growth of his tumor it needs to happen immediately.
Because it will be a long, invasive surgery, she will be going after all three tumors. She will have a more clear idea of what she is dealing with once she opens him up and can see and feel around.
The approach is to get it all because she does not want to put him through any more surgeries like this if at all possible.
This surgery will be just as long and difficult, if not more so, like the one she did to remove his tumor last year. This is because his body is not as strong, having gone through so much additional treatment since then.
There are no real promises going into this, as with most tricky surgeries. She is a very skilled surgeon and we love her and trust her with our son. (And she just go back from Mexico and is well rested!)
The goal is to remove as much tumor mass as possible to ease the pressure on his lungs and other organs without damaging any vital organs. All of this is to give him more quality of life.

Ryan and I are holding up just fine. We wake up each morning and get out of bed because usually little sweaty bodies crawl into bed and force us. We don't pretend this is easy. This was never in OUR plans for our sweet son. But he enriches our lives more than we planned. He has teaches us a piece of why Jesus Christ asks us to be a little child. He is humble and meek, patience and loving, and unwavering in obedience, even when things are hard. We love William so dearly and are repeatedly amazed by his strength, faith, and submissiveness to God's will. He never complains or asks 'why me', he simply trudges forward and patiently endures horrendous amounts of pain.

We are feeling the peace and comfort that comes from all of your many thoughts and prayers and fasts. Thank you. A heartfelt thank you!

Swept Off Our Feet

2011-11-20T11:46:00.001-08:00

... and making a 180 degree turn.

Thursday night:

Increased difficulty breathing.
Put on oxygen since it was assumed low oxygen sats were due to pressure of the tumor on the lungs and diaphragm.
Hemoglobin dropped again and anticipated another transfusion Friday due to possible bleeding into the tumor.

Friday morning:

Still spiking fevers, but blood cultures still negative.
Needed another blood transfusion, but all other labs stable and good.
Planned to start chemo that night or more likely on Saturday morning.
Chest x-ray to address breathing issues. (Tuesday scans showed chest/lungs were clear).

Friday noon:

While walking out of room to go to x-ray, informed that after consultation with surgeons, surgery is scheduled for Tuesday to remove as much of the large tumor as possible.
Surgery decision made due to bleeding in the tumor for the second time (happened after chemo round 1 too) and greatly increased risk of a large bleed occurring with next chemo cycle that would be too big to manage with transfusions. (see below for more detailed explanation).

Friday afternoon:

Surprising x-ray results showed left lung completely surrounded by fluid and almost no function in upper or lower left lobes.
Surgery to insert chest tube scheduled for that evening.

Friday night:

Chest tube procedure successful.
More than 500ml (half a liter) of blood and fluid drained immediately.
Post surgery x-ray disconcerting as almost no improvement in lung function evident.
Went over CT scans from Tuesday very carefully with the surgeon examining the tumor images.
Overwhelming.
3 tumors in abdomen.

Very large one in upper left quadrant of abdomen.
Smaller, more dense one just below it and extending into his pelvis. (non-operable for now)
Another dense one in the bottom of the pelvis. (non-operable for now)

Moved to PICU for continued observation.

Saturday afternoon/evening

Hemoglobin dropped again. Double unit transfusion.
Chest x-ray reveals no improvement in left lung.
CT scan to figure things out a little better.

Left lung: suspected major infection and minimal capacity.
Lower right lung beginning to gather fluid.

Becoming critically important to restore lung function or he won't have enough lung capacity to undergo surgery. (need more than a single lung to provide O2 during extensive surgery).
Intensive respiratory therapy begins.

Sunday:

Chest x-ray shows improvement. Left lung shows pockets of air opening up.
Clotting levels are high meaning his blood is not clotting well enough.
Received fresh frozen plasma to aid in clotting. This will be good in preparation for surgery.

In depth explanation:

His tumors began as fairly solid masses (more or less). Chemotherapy gradually kills the cancer cells. When this happens, sometimes the tumor begins to shrink in on itself. This is what William's tumor did last time and what the two smaller tumors appear to be doing. The large tumor is not behaving so nicely. As the neucrosis (dying cancer cells) is occurring they break apart from each other. This make the tumor become less dense (think of rotting fruit), but the tumor begins to swell as the cells move apart. The tumor becomes inflammed as the body tries to go in and repair/heal. Remember that since the body produced the cancer cells, it does not recognize it as a foreign body. As this is happening, fluid is released from the cells and is also produced by the body. Also, tumors always have a blood source. As the cells die and fall apart, the blood no longer has a destination, thus the bleeding. Often it will dry up on its own and sometimes it doesn't. We do not know if the blood supply to his large tumor is a large vessel or several small vessels. Since the bleeding has occurred after both rounds of chemotherapy, he is at a greater risk of developing a larger bleed with continued chemo that could not be rectified by transfusion. This would occur when the chemotherapy continues to weaken the make up of the tumor and possibly perforates the blood vessel and he could suffer from a massive internal bleed. So the plan is to remove as much of the large, swelling tumor as possible as long as we can get him stable enough.

Monday will be the pow wow with the surgeons as the surgery plans are made and his current state is assessed. Please pray for his lung capacity to improve and sustain him and for the doctors to make the right decisions and be skilled in the surgery process.

Happy and Moving Forward

2011-11-16T22:21:00.000-08:00

It is often hard to know where to start when I've been composing blogs in my head, but never took the time to write them. So I'll just start by spewing out a recap of events. I'd post pictures, but I'd have to have my camera with me and I don't. More on why later in the post.

William's birthday was great (see last post). He seemed a bit pale, but his lips remained pink enough (in my judgement) to refrain from calling the doctor. He had a clinic visit the next day anyway. As expected, his cbc revealed a hemoglobin level of 8.3 and platelets at 24. The magic transfusion numbers are 8.0 and 20, but the doctor sent us up for blood and platelets anyway to eliminate the need to come back in a day or so. And it was a great boost for his upcoming party with friends on Friday. Thank you. Also, because we are well seasoned in the life and style of neutropenic cycles, the doctor let us cancel our next two scheduled visits, trusting I would call for anything on the list of "when to call the doctor." Awesome. Sometimes there are perks to being a repeat cancer offender.

The birthday party was fantastic. It was fairly low key as William doesn't have the stamina to run around or do much in the way of sustained physical activity, but it was perfect. He hosted a movie night with some of his friends to watch "Star Wars: The Phantom Menace." We borrowed a projector, set up couches like stadium seating by putting one sofa on risers, ordered pizza, popped popcorn and had plenty of Skittles, Starbursts, and M&Ms on hand. The boys laughed and probably had more fun making wall shadows with the projector. I loved watching William laugh and be silly with so many friends. He just felt like a normal 10 year old kid for the night. That night was one of our small miracles.

A couple months ago (before the cancer recurrence) I was asked if our family would sing in church. I accepted. We've never done this or advertised any singing ability. Ryan sings beautifully. I will sing in a choir while preferably standing next to a strong singer. The boys enjoy singing with the radio and in primary (church class). But I've always wanted my boys to be singers. I heard 4 or 5 brothers sing in church when my boys were very little. The brothers were in their late teens to early twenties. As I listened to them I thought, "That's what I can do with 5 boys." A few weeks ago, while feeling quite overwhelmed, I canceled our singing debut. But my musically gifted mother, with a special talent for children's choir's, found a beautiful and simple piece of music and took it upon herself to teach the boys the song while she was visiting during Halloween. At the last minute, with a bit of rearranging and program approval, we were back on the program. Saturday morning we met at the church to rehearse with our accompanist for the first and only time. It was near disastrous. The boys kept fighting and whining and just plain not fun to deal with. We left praying for a small miracle that it would all work out. I just wanted a sweet memory of our family singing together. Is that really too much to ask? They sang beautifully. Soren stood in front and was the typical flirt he is and sang out loud and clear. No one punched, kicked, or shoved one another. No on touched, licked, or breathed heavily into the mic. It was perfect. And if it wasn't perfect, don't tell me because that's how I'm going to remember it.

The next day, Monday, he started to look more pale. By that evening, I decided I'd call the doctor. I drew labs and dropped them off at the hospital. The doctor called me a couple hours later to confirm that his hemoglobin was indeed low: 7.9. His body should have be on the upswing since the next round of chemo was scheduled for Thursday, so we decided to wait and see if his body would start making more red blood cells on its own. Every transfusion carries its own set of risks. Besides, he was acting quite pleasant and cheerful, not overly fatigued. Early Tuesday morning we headed to the hospital for a CT scan and bone scan to assess the current state of his disease and the effectiveness of his completed chemo cycles. While sitting in the hallway, waiting to drink the contrast dye for the CT and get the contrast injection for the bone scan, he starting screaming in pain (in his tumor side) and became somewhat inconsolable. At one point I was cradling him in my arms and singing his favorite lullaby. During the wait time before the scan, we walked over to the clinic and saw the doctor. They gave him some Ativan. Love that stuff. Then his cbc revealed a hemoglobin of 7.2. He wasn't recovering on his own. The doctor guessed he may still be bleeding in his tumor, but the scans would reveal more of what was going on. So we added transfusion to our list of things to do at the hospital. We had hoped to be home by noon that day, but home by 5pm works too. It's home just the same.

This morning he still complained of pain in his side. I watched him throughout the morning and he seemed to fatigue quickly. Granted, doing math homework would fatigue most of us. After talking to the clinic a few times, I brought him back to the clinic to check him out. He was so tired he didn't even want to get out of his wheelchair. His labs looked fine, but heart rate was high. It was decided to admit him for pain control. William said he wanted to be admitted. Wow. That says something about how he was feeling. Then he spiked a fever so we added antibiotics to the reasons to admit. He was scheduled to be admitted on Thursday for chemo anyway. What's one extra night? Hopefully it's just one. The jury is still out as to whether he'll be able to start chemo tomorrow night or be delayed a few days. We only have one or two days to mess with or William's stay will extend over Thanksgiving.

The scans revealed the tumors are responding to treatment. The sense I got from the doctor was the response was acceptable, not amazing or miraculous, but acceptable and good enough. We will continue to move forward. The main tumor in his abdomen is actually larger in size. However, the interior of the tumor appears to be neurcrotic, dead or dying cells. The enlarged size is due to swelling and inflammation brought on by the active neucrosis. This is causing William's pain. Evidently, also has a smaller tumor in his lower abdomen. We missed this fact in reading the previous scan results and it hasn't been discussed because it's fairly insignificant to the the rest of the activity going on inside him. The smaller tumor has shrunk. The ankle tumor remains unchanged and the activity in his chest, likely in the lymph nodes, appears to have decreased. So we're happy and moving forward.

Make It A Decade!

2011-11-07T23:43:00.000-08:00

Happy 10th Birthday to my sweet William!

He had a great day spent at home: breakfast in bed, favorite foods for each meal, movies, cartoons.... Thank you, neutropenia. Don't we all wish we could just stay at home and rest sometimes on our birthday? My mom was in town to help out with the stuff that gets neglected when we're in the hospital so often and William and the boys all enjoyed having her read and sing with them. Thanks, Mom, for juggling all you do to make the trip. Thanks, Dad, Uncle Richard, Aunt Linda, and Natalie for taking over all her responsibilities to let her come.

One of the best treats was the Angry Birds cake. Thanks, Beth! (She makes the most delicious and amazing cakes and cupcakes). Perhaps I shouldn't admit that we ate cake for breakfast too!
Soren's gift to William was finally agreeing to the buzz cut. Soren commented, "It's okay because I still look totally awesome!" Note to self: his self-esteem is still intact.

William was born a couple years before we entered the digital age. We had some fun sorting through many of the envelopes of pictures I have tucked away in boxes of when he was born. I'm not a scrapbook-er. Period. But seeing how happy he was looking at the pictures and listening to our stories makes me want to bump that up on my priority list. I suppose I may be somewhat genetically challenged in that area given my mom is still trying to find time to do mine. Here's a fun collage of what I do have stored in my computer.Happy Birthday, William. I am so blessed to have a son so full of strength, patience, tenderness, faith, and love.

The Fun Squeezed In

2011-10-31T17:49:00.000-07:00

The past month has been a whirlwind of events and emotions and I haven't even had a chance to post pictures from Disneyland. But I want to back up a bit from Disneyland with this post.

William was in the hospital in mid September to get his broviac out (in preparation for our Disneyland trip). Unfortunately, he had an infection that kept him in the hospital longer than hoped and prevented him from using some Giants baseball tickets that had been given to him by UCSF to celebrated being done with treatment. Ryan and 3 of the boys enjoyed the game instead.

Tuesday, the day William finally got out of the hospital was one of their last home games that fit in our schedule to attend. Ryan searched the internet and found some tickets (not the 7th row from UCSF, but tickets in our budget). He invited two of his friend and they all ignored the fact it was a school night and they celebrated together! Of course, it went into extra innings and they got home after 1 am. But the memories are priceless.Who doesn't love a foam finger?

What's a baseball game without a hot dog?

So that was Tuesday night. Then Ryan and his good friend, Randy, a former tight end for UCLA, started talking about the upcoming UCLA vs. Texas football game that weekend. They do this every year and little comes of it due to their dedication to their kid's rec soccer games. Ryan attended The University of Texas at Austin for grad school and William was born in Austin. All of the sudden it became a road trip on Friday night to watch the game Saturday and then drive home that night. Randy's oldest daughter is William's age. Randy's connections with the athletic department got them great tickets to the game and to a tailgate party before the game. They also had passes onto the field with the players during warm ups and as the teams ran onto the field. They had a fantastic time. And it didn't hurt that Texas played quite well. Hook 'em Horns!
After getting the sporting events out of the system, he got down to the main perk and purpose of getting the broviac out: SWIMMING! My amazing friend, Lisa, has an uncanny connection to somebody everywhere and in every profession. She works closely with the local aquatic center (that's what happens when you're president of the local rec swim team among the dozens of other hats she wears) and knows some really wonderful, kind, and generous people over there. Because I'm too tired and lazy to post more pictures, here's the link to her blog about the day: The Stuff That Really Matters!

He also enjoyed soaking peacefully in the hot tub for over an hour while we were in Newport after he finally got discharged from the hospital in LA. It's the simple things that bring us joy, right?

The Heebie Jeebies

2011-10-31T17:00:00.000-07:00

Round 2 of chemo started on Thursday and is going well. The best part is that we finally got out of the quad room on Saturday morning. Happy dance!

We got out of the quad room because I woke up with bug bites all over my arms, ankles and neck. (And I didn't go outside the day before.) Itchy dance!

It makes me itchy all over just thinking about it. Obviously the sleep chairs are slept on by people from all sorts of living conditions and they are fabric. This has always been a grin and bear it situation---emphasis on bear it! I've always been a bit creeped out by the chairs and you would all probably laugh at my layering routine of blankets, sheets, Thermarest, and pillows before I sleep on them. I typically have at least 5 layers that amount to a few inches on top of the chair cushions. It's borderline "Princess and the Pea." The only problem is that I have no way to really cover/insulate the arms or exterior of the chair. One of the housecleaning ladies cleaning the room we were moved to said she was surprised they could be infested because they wipe them down with an antibacterial wipe. Obviously she's never really looked at the chair with the possibility of having to sleep on it. They are sometimes stained and food and candy wrappers are often stuffed in the cracks. I tried to kindly mention the fact that wipes don't kill the bugs that make their way through the fabric and into the cushions.

The nursing supervisor came and checked out my bites and offered me an all expense paid trip to the E.R. I passed and simply asked to have a nurse check my hair for lice. No lice. Whew! One of our nurses and I looked up all sorts of bites online, i.e., bed bugs, dust mites, fleas, etc. Some of the pictures looked similar, but not quite like what I had. Another nurse came and looked and concluded it was probably some sort of resistant strain of bed bug. Cringe. Cringe. Cringe. I bagged up our pillows and clothes and took them home to wash in very hot water.

The staff was great and very solicitous and even said we could sleep in the empty bed in the new room (a no-no in case the bed is needed for a patient). The quad room has been emptied and remains unoccupied with "closed for cleaning" signs posted on the doors. I like to think I took one for the team and saved some kids and families from a few miserable nights in the quad. But I must admit, every itch I have feels magnified and I think I'd pick more time in the quad over nasty bed bug bites. (gag)

Off With Their Hair

2011-10-24T22:21:00.000-07:00

Clark's baptism was wonderful and the stress of getting to that point in our weekend was all worth it. We managed to get some more family pictures snapped right before the baptism and right before the hair spray in William's hair probably wore off in my attempts to keep as much hair on his head. It was so great to have my brother and sister and their families there and a cousin and her family and so many dear friends in attendance. Clark, we love you and are so very proud of your decision to be baptize a member of The Church of Jesus Christ of Latter-day Saints!

The last weekend item: a head shaving party! Isn't that what boys love to do? However, my youngest still puts up a good show of not giving into peer/sibling pressure.

Let's first make it clear that I did not shave my head and never had any intention to do so. William even asked me not to. I guess it's one thing to adjust to a bunch of bald boys, but mom is a different story. It was all about camaraderie, not shock value! Ryan and the first 4 boys went under the clippers. Here are some shots of the fun. William wanted to go in stages.

Another Cycle of Hair Loss

2011-10-22T21:07:00.000-07:00

After 19 of the past 20 days being spent in the hospital, he's home! We got the thumbs up from the doctor Tuesday morning, packed up our stuff and made it out of there by noon. That was the miracle---out by noon. William was still neutropenic, but the morning labs revealed his white blood cell count finally starting to recover.

Thursday labs showed a fully recovered ANC and all related blood counts. Whew. We celebrated by heading straight to Target to buy William's Halloween costume. I bought the other boy's costumes the day before, but William was left behind since we didn't know if his counts were high enough to go into a store. The boys are all super excited and I'm a bit bummed because I love planning and making their costumes. But we are trying to make life simple and I probably spent as much money on costumes as I would have on fabric with only a fraction of the time required. I'm moving on.

The hair is falling out. A gradual thinning is how I would describe the course of his hair loss over the last few days. This morning the course changed. William woke up and hollered, "Where is the lint roller? I'm all itchy with hair all over me!" A balding spot in the back has emerged and I'm trying desperately not to touch it too much. Clark, my new 8 year old, is getting baptized tomorrow night and I really want a nice picture of them in their suit coats, both with hair. William won't be bathing in the morning in my effort to preserve the hair. Otherwise, I probably would have shaved it off today. Perhaps Sunday night I will.

Three days back at school is in the plan for next week. Then he goes back into the hospital on Thursday to begin round 2 of chemotherapy. He is excited to return to his class and I sense the feeling is mutual with all his classmates and friends. I'm guessing his new wheelchair will be more popularity than self-consciousness. Friday was supposed to mark his return to school, but Soren had a preschool field trip to a local pumpkin farm and I opted to have William tag along. William will be in the hospital for Halloween, again, and missed out on that stuff last year. I decided the pumpkin farm and the memories of that day were more important than school. Having gone through this before, this time we are focusing more on the quality of his life. We understand the cycles, routines, risks, etc., and are trying to make this all less devastating.

Set Backs and Strides

2011-10-17T19:26:00.000-07:00

Friday night I posted fully expecting to head home. Optimistically or irresponsibly, you pick which it is, I didn't even pack a suitcase. I grabbed some pajamas for William, but that was it. William was admitted that night after his transfusion when he was unable to keep his oxygen saturation above 92% on his own. Ideally, most of us function at 99 or 100%. Low 90s is not great and he even dropped into the 80s frequently. His high respiratory rate and the appearance of labored breathing was cause for concern and another chest x-ray was taken. No significant change. That's good enough for me. But making it to Camp Okizu slipped from our reality.

Saturday morning labs revealed an increase of hemoglobin from 6 to 7. That's unusually small after receiving a unit of blood. Hemoglobin lesson: normal range=11.5-14.5 g/dL. Transfuse at <8 g/dL. Another blood transfusion was ordered and also a platelet transfusion. All attempts at oxygen weening failed as well. This secured another night in the hospital.

At this point I left William in search of a toothbrush and change of clothes. The new hospital may still be under construction and way behind deadlines, but I'm so glad the new Target nearby is finally done.

At 3am, Sunday, the nurses woke us up to tell us William was getting transferred to the PICU for closer observation because of his labored respiratory state. I thought he seemed fairly typical to what he has been the past few days, but I guess the uncertainty of what may be going on was causing increased concern. So I packed up our things quickly and we moved rooms. Another CBC and chest x-ray were ordered. CBC showed no increase in hemoglobin since the 3rd transfusion. X-ray looked fine, but 2 more units of blood were ordered as well as an ultrasound of the primary tumor. The doctor seemed fairly puzzled why he was burning through the red blood cells at an astounding rate. He ordered more labs and urine tests. Everything seemed to check out. William was moved out of the PICU Sunday afternoon, but since his ANC dropped to zero, he was moved behind the double doors in the isolation rooms. He continued to require oxygen, but by the time he was almost done with the second unit of blood for the day, he had enough energy to walk up and down the hall a few times. (The hall is only about 75 ft long). Previously he would feel almost too weak to walk to the bathroom and would panic until he got back into bed and back on oxygen.

This morning, Monday, a new William woke up. His lips were pink, his cheeks had a tinge of color and he actually said he wanted to eat. He sat up without too much difficulty breathing and eventually weened himself off the oxygen. He hasn't requested pain meds or zofran. His hemoglobin made it to 11 (great). His platelets are dropping again, but that is only a 30 minute infusion compared with the 3 hours for blood. He are hopeful he will be able to come home tomorrow, but all will be dependent on labs tomorrow morning, continued good oxygen levels, and decreased respiratory rate (that one is still a bit high, but showing improvement.)

William has jumped back on the weight roller coaster and has become quite skeletal. He also has a wheelchair due to the tumor in his tibia. Too much weight bearing on his leg could cause increased damage to the bone since it is still growing and a foreign mass is in it. His hair is still there and getting so curly. He has tight little ringlets on the top and I love it. He's not supposed to lose it as fast with this round of chemo, but I'm assured that he will. Good thing bald is so beautiful too!

So our lives change and we adjust. Sometimes we move backwards, but hopefully the steps we take forward cover more distance.

One More Week in the Books

2011-10-14T22:58:00.000-07:00

Where has the week gone? Oh, yeah. It was sucked up in the hospital. Just like last week too!

William endured 5 days of chemo, finishing around midnight on Monday. He tolerated it well and managed to eat throughout the ordeal. However, his sense of smell was affected. Oh, the hospital food that was wasted...it wasn't tragic. William managed to request Splash Cafe clam chowder (our favorite in Pismo Beach) for breakfast, lunch, and dinner almost every day. Luckily, we came armed with a bunch of it in frozen packages, imported this summer from wonderful family members! McDonald's was the other appetite beneficiary. Sometimes I'm amazed at the things to which I stoop for cancer!

The chest tube became the next hurdle to cross. The rate of fluid drainage kept the tube in until Wednesday and an air pocket in his chest kept him in for another day. And a blood transfusion made him discharged late on Thursday. During these extra days, I learned more about the hierarchy of narcotics. William and Dilaudid became fast friends. After many doses of morphine, William seemed to still be suffering from unnecessary pain from the tube. Enter Dilaudid. It was awesome. William relaxed in a number of minutes and with a sappy look on his face said, "Mommy, I love you. And I really like medicine that makes me feel giggly."

Re-entry into life at home was stressful. Shortly after arriving home, the vomiting began. And the boys were whiny and needy. Can you blame them? Ryan and I felt stretched too thin, but that's parenthood, right? Everyone needed some serious TLC and Ryan and I needed some serious sleep and patience replenishing. The boys eventually got to bed, although Clark was a hold out until 11pm. William began to have some anxiety, often a sign of low oxygen levels. I worked on calming him down and called the doctor, but he eventually went to sleep and so did we.

This morning was crazy. I whisked 4 boys off to the pediatrician for 8:15 am flu shots while Ryan hit the donut shop since my sweet Clark has patiently waited for 2 weeks to take treats to his class for his birthday. Buying donuts is not my typical birthday treat. I'm a "make a batch of homemade cookies" type of mom. But Clark needed something a little bigger to feel special. Then I stopped at the office to buy hot lunch for all the boys because making lunches fell off my "to do" list too.

William's anxiety and labored breathing continued this morning. He also seemed quite pale, so I called the doctor. Again. After discussing it with the the surgeon, we returned to the hospital for a chest x-ray and I asked if I could draw labs for another CBC because I was suspicious. He agreed. We drove to the hospital, conducted business and headed home to wait for results and to get ready for a family picture.

Yes, I crammed in a family picture. I really wanted a family picture before the cycle of baldness. And the picture in front of the Disneyland flowers at the main gate does not count! Family pictures are a unique form of torture. And tonight was no exception. William was pale as a ghost, with barely enough energy to sit up. Wait, who am I kidding? He didn't even have than much energy because we had to hold him up most of the time and he laid back on the grass between groupings. The boys only wanted to run wild, do bunny ears, and do the opposite of whatever they were asked. And it was hot and muggy. Thanks to a great friend who was so patient and great to fit us in last minute!

After the picture, we wiped the sweat off our foreheads and charged home to get Ryan and the boys off to Camp Okizu. Camp what? Camp /oh-ki (like hi)-zoo/ is a camp dedicated to supporting families who have a child with cancer. During the year they have week-long oncology camps just for kids who have or have had cancer, SIBS camps just for siblings, and weekend camps for families. There are also camps dedicated to bereavement and teens or older patients and their families. The word on the street, or at least within the walls of the northern California pediatric oncology world, it is fantastic and run purely by volunteers and donations. This weekend we had hoped to attend as a family. Instead, William and I headed to the hospital for another CBC, chest x-ray, and transfusion. Perhaps we'll still make it up there on Saturday if we make it home from the hospital in the wee morning hours of Saturday, but more importantly, I hope Ryan and the boys have a great time.

May Sunday be a day of peace and rest.

Small Miracle and Tender Mercy

2011-10-07T21:19:00.000-07:00

After much prayer and soul searching, Ryan and I decided on a chemotherapy option, a plan similar to what he's already gone through, but a slightly different cocktail since the cancer has already proven resistant to previous treatment. This option is also the recommendation of our oncologists. All our options are a bit of a Hail Mary, but every once in a while one is successful. Proceeding with this option doesn't rule out our other options nor decrease the quality or quantity of his life. We have felt impressed that we need to fight for now and demonstrate our faith by truly placing his life in God's hands. What better place could any of us be?

Chemotherapy began last night (Thurs) and will continue for 4 more days. We hope for discharge by Tuesday or Wednesday of next week. Then we'll wait for his lovely curly hair to slowly fall out again and the cycles of neutropenia to recommence. Ugh.

This morning we experienced what feels like the first good news, a small miracle, and a definite tender mercy. The final results of his bone marrow biopsy are negative. The bone marrow is not involved this time around. This doesn't change his course of treatment or prognosis, but it makes treatment a little less complicated with one less thing to battle. It is also a bit of a relief not to have to go through transplant again. He still has one batch of stem cells in the bank, but that may need to be used if he undergoes the MIBG therapy again.

William's buddies, James and Zak, both visited today and spent quality wii time together. I even enjoyed some adult conversations with their parents and even some fresh air while walking to Selland's. Thanks, Lisa, for the walk that didn't even come close to burning the calories we inhaled, but the sandwich was scrumptious!

No tears have been shed today ('cause we ran out over the past few days) and we are moving forward, taking one day at a time, and being grateful for that day.

Deeper Faith and Understanding

2011-10-06T21:13:00.000-07:00

It is days like yesterday we never anticipated facing as parents. We hear of days like this, but it is only in the Lifetime movies or in the New York Times best-seller books.

William received a new broviac. During the surgery, the fluid in and around his lungs was found to have greatly increased from what the CT scan revealed on Monday. The decisions was made to insert a chest tube while still under anesthesia to drain the fluid. While in the OR, over half a liter was drained, much to the astonishment of everyone. That is a lot of fluid in a tiny little chest. He has since drained more than another half a liter. He is still on oxygen as his breathing is still shallow, but he has perked up, although the chest tube is quite painful with any movement. He was pretty out of it after the surgery, and although responsive, he didn't open his eyes for nearly four hours. And he opened them only because his best friend, James, arrived. Oh, the magic of a good friend. The two of them just talked about the important things, like Angry Birds. James and Lisa kept William occupied while Ryan and I had "the talk" with the doctor.

William has at least 3 tumor masses. One in his tibia (near his ankle), one behind his sternum, and a very large one that takes up the entire left side cavity of his abdomen. His liver and intestines have all been pushed to the right side. On the scan, with my untrained eye, it appears much larger than the original mass. The bone marrow biopsy preliminary results are still somewhat inconclusive and additional staining needs to be done, but it appears that at least minimal disease exists. Regardless of what the final results reveal, due to 3 separate, non-contiguous tumors, it has metastasized and it can only do that through blood. He is undeniably in Stage IV.

The cancer is very aggressive and has come back with a vengeance. The doctor explained that it is growing exponentially and described it as "exploding". We saw the scans, and although we haven't read the report to know dimensions, it appears much larger than the original tumor.

Statistics are statistics and ours are far from in our favor, but we still believe in miracles even if the miracle is not what we envision. We have shed many, many tears, and pleaded in prayer for guidance. The depth of our faith is being tested in unimaginable ways. As Ryan and I make the decisions to determine the course of action and treatment, we have felt strongly that we have to put all possible outcomes in God's hands. We have the faith to do so, but it hurts like nothing we have ever felt. We wish we had easy, clear-cut options, but we don't. Both of us have had to go to the places no parent wants to go to and prepare ourselves for what true patience and trust in the Lord requires of each of us.

As we have pondered and looked for answers, I read Dieter F. Uchtdorf's talk, Continue in Patience, from from April 2010 General Conference. Here are some excerpts that impressed upon me the most.

"...patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well! Patience is a godly attribute that can heal souls, unlock treasures of knowledge and understanding, and transform ordinary men and women into saints and angels. Patience is truly a fruit of the Spirit."

"Patience means staying with something until the end. It means delaying immediate gratification for future blessings. It means reining in anger and holding back the unkind word...."

"Patience means accepting that which cannot be changed and facing it with courage, grace, and faith. It means being “willing to submit to all things which the Lord seeth fit to inflict upon [us], even as a child doth submit to his father.”^{(Mosiah 3:19)} Ultimately, patience means being “firm and steadfast, and immovable in keeping the commandments of the Lord”^{(1 Nephi 2:10)} every hour of every day, even when it is hard to do so. In the words of John the Revelator, “Here is the patience of the saints: here are they that keep the commandments of God, and … faith [in] Jesus.”^{(Revelation 14:12)}

Ryan and I can't change what we are facing, nor could we have prevented it. We don't know or fully understand God's will for William and our family at this time, but we will keep praying and fighting this battle until we do more fully understand.

Choosing Hope

2011-10-04T21:00:00.000-07:00

Our hearts are breaking. Our minds are jumbled. Our emotions are fragile.

The cancer is back and it has progressed more than expected. William was admitted on Monday in Sacramento due to the need to move quickly. A CT scan revealed a new, large mass in his abdomen. Today he had a bone scan and bone marrow biopsy. Tomorrow he will have surgery to place a new broviac. After surgery, Ryan and I will meet with the doctors to discuss the bone scan results and hopefully have the preliminary bone marrow biopsy results. We will also be given the cold, hard, and unpleasant facts about his disease and our options. He will begin, again, a regimen of high-dose, aggressive chemotherapy.

William is in good spirits. He is very sad the cancer is back and that he has to get a new broviac. This time around feels particularly hard because we know what cancer treatment entails. He doesn't want to talk much about it. We suspect it will take him some time to process it all. His main question/request was if he could still have a big birthday party. I love the perspectives of a child.

At this point, few things, other than faith and hope and prayers, are in our favor. We still believe in miracles. It is a miracle he made it to this point. We still have deep faith in a loving Father in Heaven who knows and understands the plan far better than us. But this is still hard to wrap our heads around it as we thought he beat this monster. A good friend reminded us to choose hope. We do, but it a constant, conscious effort.

We are grateful for the few weeks we had filled with joy and happiness and celebration. Hopefully our buckets are adequately filled to weather the next stretch.

This is Not the Post I Planned on Posting

2011-09-30T10:31:00.000-07:00

I was supposed to post Disneyland pictures, but the camera is at the hotel with Ryan and the four boys. William and I are in the hospital and have been since Thursday morning. Total BUMMER. Bummer. Bummer. Bummer.

We spent Saturday, Monday, Tuesday, and Wednesday at Disneyland and had a great time despite the expected tantrums, whining, and continual begging for overpriced Disney paraphernalia. Thursday morning as we were getting ready to check out of our hotel and head to Newport Beach until Sunday, William began to complain of severe chest pain and that his ankle which had been hurting during the week was getting worse. The chest pain was mild during the week and came and went periodically and I figured it was probably just sore muscles from the pushing and pulling motions while holding on on roller coasters. He never really complained a lot. His ankle was bothering him, but only appeared slightly swollen on Monday. We iced it each night and again, he spent most of the day in the wheelchair. I attributed the pain to possible overuse as he is just starting to be more active---maybe a possible mild sprain---he had no discoloration. However, when Thursday’s complaints seemed more intense, I called UCSF since chest pain isn’t something to really brush aside. We were sent to the ER at Children’s Hospital of Orange County (CHOC). I was already familiar with this hospital since it was part of our emergency plan, if needed.

Blood labs quickly determined anemia. He had low hemoglobin and needed a transfusion. Then he spiked a 102.5 degree F temperature. That earned us an official admission. 24 hours later, and after many labs were drawn trying to determine the source of the fevers, elevated levels of something in the blood indicated his body was fighting something somewhere. But what? And where? The ankle began to be a focus of attention. An x-ray revealed a possible fracture on the tibia, but was somewhat inconclusive. The orthopedic doctor ordered an MRI to rule out a bone infection, osteomyelitis. His MRI was at 8pm Friday night. At about 11pm, as Ryan was about to leave after finally bringing me a change of clothes (I had been suffering in a skirt for two days!) the orthopedic doc came in our room to inform us that the MRI showed a very obvious mass in the left tibia.

Our hearts sank. Really sank.

Mass is now an official bad word in our house.

A biopsy needs to happen to determine what it is exactly. But the doctor feels like it is best to begin this new process at our primary treatment center as soon as possible. He was discharged at 1pm today and we will head back home tomorrow and check in on Monday to the hospital at UCSF. There are a lot of unanswered questions and lots of phone calls to be made to coordinate appointments and treatment. We are trying not to jump to any conclusions and take each day one at a time.

Today we are going to spend this afternoon together at the beach, cherishing the good moments and making happy memories.

TO THE BEACH.....!!!

Farewell, Broviac

2011-09-12T13:22:00.000-07:00

You will not be missed.

It is done. It is out. Hooray. Hooray. Hooray.

Sunday morning the doctor removed William's broviac in a quick procedure. The black line on the tubing is a thread that was about 1/4" outside his body. The red mark is a cuff that was just under his skin and secured the broviac in place. The surgeon made a small incision to his existing hole to detach the cuff and then pulled it out. I am amazed at the length of tube in his body. It wasn't what I had pictured in my mind. No stitches were used to close the wound. A simple dressing was put on it and we were told the skin would seal in about two days and at that point he could finally swim.

Due to the infection, he has to remain at the hospital for 48 hours after the procedure to receive I.V. antibiotics. He now has an I.V. in his hand and is not a fan, but it's better than the alternative. He will hopefully be discharged on Tuesday.

Let the countdown to a lot of splashing begin!

Going Out Kickin' and Screamin'

2011-09-10T16:58:00.000-07:00

That would be me. Not William. That boy is so patient and calm and resilient. The light at the end of the tunnel is just a little farther than we thought and I'm frustrated. And we're still waiting for the fat lady to show up and start singing.

Saturday, 7:00 am, the call came from the hospital. Blood cultures positive after 24 hrs. William must come back to be admitted. Darn it. But I had slept restlessly anyway because the 24 hour mark was at 3 am and I was expecting a call at 3 am with a positive culture finding. That's the realist in me.

The biggest bummer of this whole ordeal is UCSF gave William 4 tickets, 7th row, to the Giants vs. Dodgers baseball game tonight and he had invited 2 friends to go with him to celebrate finishing his treatment. As I drove to the hospital I thought, "They can pull the broviac today, give him a dose of antibiotics and send him home on oral antibiotics and since it's early, there may be a chance he'll make it out in time to make it to SF for the game. Or maybe they'll give him a dose of antibiotics and let him go to the game and come back tomorrow." Then I realized how completely ludicrous those thoughts were because nothing moves in a timely, predictable manner in a hospital. A positive culture typically means 10 day of I.V. antibiotics and even if I could convince them that I could administer them at home, he is usually kept in the hospital until the cultures are negative or he is fever-free for 24 hours. Oh well. Sometimes I need my thoughts to entertain me and keep the optimist in me alive.

After the doctor's here consulted SF, it was decided any scenario that got him to the game was not possible. I get that. His safety/health isn't worth unnecessary risks. The risk of sepsis (blood infection) is high, especially with a broviac. We were informed his broviac couldn't be removed until Monday at the earliest because the low staffing on weekends and the surgeons typically only do scheduled weekend procedures and emergencies. Evidently my emergency is not theirs. Home antibiotics aren't possible because the home health agency is closed on the weekends and wouldn't be able to complete the order for home meds until Monday. I broke the news gently to William. He got teary, but I promised him his dad would take him to another game, but the seats may not be as good!:) He's so good.

Oh, and did I mention his broviac could have been removed last week? Due to the Monday holiday last week, the time slots for oncology procedures were full from those unable to be performed on Monday. We have this bad luck thing with weekends and holidays. And just when we thought it couldn't get worse, we got stuck in the quad room. Ugh.

And just when we thought it couldn't get worse than that...I'll spare you the details on the less than kindred spirit roommate situation. Let's just say that I'm glad the Benedryl knocked out William for several hours so he missed the graphic language lesson. I even tried plugging my ears.

Now, I'm happy to report some good news. The wonderful, understanding oncologist, in her infinite wisdom, thought to mention William's case to the surgeon today so she could get him on her radar for a possible Monday procedure. The surgeon's reply went something like this. "Oh, I'm not busy this weekend. I'll do it tomorrow. " She then stopped by our room and asked, "How does 9 am sound?" Beautiful. Marvelous. Perfect. Thank you. Thank you. Thank you.

William will have a peripheral line placed to continue I.V. antibiotics for 1-2 days. (We're hoping for one day). Then he can be sent home on oral antibiotics since his risk of infection is much lower without his broviac. So here's to hoping for a Monday night or Tuesday discharge!

William can't wait to run his hand over his chest and not feel any tubes, soak in the tub up to his neck, and jump in a swimming pool. I can't wait for bedtime to come and not have to flush his lines, do a dressing change, or change his caps. Then maybe I'll do less kicking and screaming and more singing and dancing.

It Ain't Over 'Til the Fat Lady Sings

2011-09-09T10:15:00.000-07:00

Wanted: One singing fat lady

William has been more tired this week than I remember after past treatments. It's hard know whether to attribute this to his treatment, school, or a little of both. He has also had pain in his sternum and shoulder. This pain is likely due to the GMCSF injections he has been getting nightly to stimulate white blood cell production so his body can attack any cancer cells that the antibody treatment flagged as bad. Bone pain is a common side effect. So are fevers.

Last night he spiked a 101.4 degree F fever which necessitated a call to UCSF and confirmed the assumption that we were headed to the hospital to get a dose of antibiotics. William and I headed to the ER around 11:30 pm. It is a sad commentary on this lifestyle when I was actually glad it was happening in the middle of the night because it created the least amount of disruption to our family. And it's pathetic that I didn't even pack a "just in case" bag since I was that confident of exactly what the treatment plan would be. I just grabbed my purse, book, phone charger, hospital notebook/briefcase, and William. I really shouldn't be so confident. Have I really not learned that yet?

Thankfully, as expected, labs and blood cultures were drawn and a dose of antibiotics was given. The best part was our favorite nurse, Lynn, was the charge nurse on the oncology floor last night. She came to the ER and took care of us the whole time since the ER was a little busy and they also aren't trained for dealing with broviacs. Plus, she was stuck on one level of Angry Birds and needed William to help move her progress along. It was a hard sell to get him to agree to that! ha! Thanks, Lynn, for the great company and personalize treatment! It was like having our own private nurse! We all need one of those. Especially in an ER!

We returned home around 3:30 am and I counted my many blessings that it was Friday. We are going to have a low key day around here.

Last Scheduled Hospital Stay. Check.

2011-09-04T18:22:00.000-07:00

After spending Monday through Friday at UCSF, William completed his last antibody therapy treatment!


We celebrated!

He still has two more rounds of Accutane to complete and then the post-treatment scans, labs, and bone marrow biopsy will occur in mid-October. He will be re-staged at that point and we are praying to finally hear the words "full-remission"!

Crawling Back In and Then Back Out

2011-08-29T17:37:00.000-07:00

On August 1st, labs were drawn to check the function of William's immune system. Earlier tests showed the T and B cell counts were high enough to exit isolation, but didn't reveal whether they were actually functioning yet. The labs were sent to the Mayo Clinic and take 2 weeks for results. In the meantime, we were told isolation would end at 6 months as it does for most patients.

Most patients. William is not most patients. Why do I forget? On the first day of school as we watched William walk back into school, I turned to Ryan and asked, "Did we ever get some sort of official clearance to go back to school?" We kind of shrugged and commented that we remembered discussing it on several occasions with doctors and nurses with the assumption that it was okay, but never received the golden ticket declaring isolation over. Most things are fairly anti-climatic and are only as exciting as we choose to make them. Think baby steps.

The doctors never called with the results and I just got busy with life to really care about the results. Is that a sad commentary on how many results we've waited for or what? The Type A in my personality is really beginning to suffer, but I can only control so much. See, I'm starting to learn. I figured the results are what they are, they would call me if there was a problem or surprise, and the results really don't change anything. Right? Wrong. Well, sort of.

On Friday morning, while running errands I thought I'd just make the quick call since it had been almost 4 weeks---just out of curiosity and for the sake of knowledge. The results: Function at 37%.

Nurse: We like to keep the kids in isolation until they are over 50%.
Me: (shock hitting. tears forming) But he already started school!?
Nurse: How long ago?
Me: Two weeks ago.
Nurse: (bless her understanding heart) Oh. (sympathetically) This is not a black and white matter and it is something that we are only recently running into with the antibody patients. The antibody seems to slow the recovery of the T cell function. We will want to re-test him in 2 months at his 9 month post-transplant mark.
Me: Okay. But we were planning to go to Disneyland next month too.
Nurse: Let me talk to the doctors again and I'll call you back. 37% is really close and it was almost a month ago.
Me: (deflated) He starts his last round of antibody on Monday.

I sat in the car and just cried. This was not the end of the world. This was not something horrible. This could be a lot worse. This was only a hiccup. But it was just a smack in the face again that we still can't make plans without the looming possibility that all could change at the last minute. In the hours that passed while the doctors discussed his T cell function, I decided we would still go to Disneyland regardless, but boogie boarding at the beach may be off the table. We'll see.

The verdict came back in our favor! Hooray! After studying some recent national studies, patients with function over 30% do fine off isolation. William can continue to go to school, but we still need to continue our vigilance in germ abatement. He is more susceptible to everything. Of particular worry will be any outbreaks of chickenpox or nasty viruses such as hand/mouth/foot disease which can be fairly common. Since he essentially has a brand new immune system, he is no longer vaccinated against anything. And he cannot be re-vaccinated until his function is higher. New vaccinations will be spread over a year or two. So please stay away from us if you think you are sick or have been exposed to sickness. Wouldn't we all be a little healthier if we just practiced this in general with everyone? I think my love affair with Clorox Wipes and hand sanitizer will be a long one.

In other news, my angel sister is holding down the fort this week while William and I hang out at UCSF. Last round. Whoo Hooo! The boys love it since her darling 18 month old daughter becomes their surrogate sister for the week. I wonder who is babysitting who?

Here's to one more week of antibody. May it be uneventful.

Crawling Out of Our Hole

2011-08-24T22:08:00.000-07:00

When the isolation ended, it really ended. I even removed the sign on our front door.
Part of me wants to put the sign back up because it kept the door-to-door salesmen at bay.

The trip to Idaho was amazing. Literally. It is amazing pleasant driving with one, self-sufficient, calm, quiet child whose bladder can hold it for astonishing stretches. Ryan and I joked that it felt like we were on a date because we were able to talk for hours uninterrupted. We stopped once for gas the whole way. It was incredible, truly incredible.

The boys loved Idaho and being able to play with cousins, pick raspberries, ride bikes, feed the ducks and eat all of Grandma's candy stashes and sodas. I orchestrated a doctor’s appointment with an Idaho Falls pediatrician and found a lab in our insurance network to run labs on Monday so William could be cleared to begin his next round of medication. All went smoothly, but I must admit I had mild anxiety that morning as I tried to anticipate anything that could possibly go wrong. The past year and a half we often we never knew when we would land back in the hospital at a moment’s notice for an undetermined period of time. I wonder when I will stop having these mild anxiety attacks surrounding William’s health? I jump when I see him put his head in his lap and sometimes it just means he's tired.
We enjoyed a quick trip through Yellowstone, the Tetons, and Jackson Hole. Ryan and I drove around Jackson Hole to find the place where he proposed only to find the meadow is now a large time-share condo complex. It is ironically called Love Ridge. Cheesy, I know! I think our kids could’ve cared less, but it was fun to reminisce for a moment.

A whirlwind describes our trip to Salt Lake. We spent 2 days and enjoyed being with grandparents and aunts and uncle. The highlights included swimming at the Tennis Club and watching Soren, 4, show up his brothers by being the first to jump off the high dive. That kid is fearless. I’m in trouble.

We enjoyed at quick walk through Temple Square and had quite a treat when we went into the Conference Center and got to sit in during the weekly practice of The Mormon Tabernacle Choir.

Isn't the Salt Lake Temple beautiful? Ryan and I were married in it. Ahhh.

We spent the last day in Park City at the Olympic Park riding the alpine slide and zip lines and watching the ski jumpers practice their jumps into the large swimming pool.

However, all was not pleasant. Foosball got a little heated on the first day we were there and William and Clark got to use their allowance money to pay for a broken window. I suppose a broken window is a rite of passage for most boys. At least Grandma comforted them by telling them that their uncles broke windows in that room multiple times.

The drive home was filled with whining and fighting. What did we expect? However, we managed to only stop once and make record time. Miracles do happen.

First Day of School

I’m not a terribly sentimental person. I sure some of you might gasp if I admit that sometimes I let my husband drop the kids off to school on their first day while on his way to work. But I’m changing with this whole ordeal and embracing the little things. Ryan and I escorted all four boys to their classes. It was awesome to see William greet his friends and see so many parents that have been so supportive and concerned for our family. I live in the best community. Really, the best! But I didn’t cry…until I went back to pick them all up after school. Seeing William on the playground and come out of his classroom with all the kids as if life was completely back to normal made the tears start.

William loves being back. He is exhausted, but I think that’s normal for most kids. I love this picture of William and James on the first day of school in Kindergarten. They have always been in the same class. Last year they weren’t going to be in the same class, but luckily we won’t count that year! Here they are on the first day of fourth grade. And they even have the same teacher they had in Kindergarten! I am grateful for the coincidence fairies!;)

All the boys love their teachers. The twins love being in the room next to Clark. Clark has the same teacher he had for 1^st grade and said the best part of going back to school was seeing his teacher again. I love that. The boys are also excited to finally get to walk to school on their own. I love this picture.

A week with the boys back in school and no doctor appointments feels almost too good to be true. William has one more hospitalization. We check in at UCSF Monday and stay through Friday. It will be the last hospital stay! Yay! Yay! YAY! His treatment will officially be done in mid-October as the last round simply consists of an oral medication. He still has lots of appointments and such, but life is starting to normalize and we are crawling out of our hole. It feels so good to go places together as a family, see him socialize, and let so many of you who have prayed so often for him and been so supportive of our family see how great he is doing.

Spot the faithful in this photo!

2011-08-11T22:21:00.000-07:00

Friend Lisa here. Julie emailed this photo to me and it should be shared with all who love to smile. When the Murdocks come out of isolation, they really get out. I sure hope William has a great trip because he has work waiting for him in a couple of days. School starts Monday! And, as luck would have it (wink, wink), my son and William are in the same class. Comb all that new hair, William, for my annual 1st day of school photo because you know James won't be combing his mop.

Isolation D-Day!

2011-08-02T21:35:00.000-07:00

It's official. William is 6 months post transplant! Why is this important, you ask? (If so, you haven't been following the blog. And that's okay.) No more isolation! William and I celebrated by catching a Saturday matinee of Harry Potter and the Deathly Hallows Part 2. We both loved it! But I must admit, I chose a matinee for the lack of crowds. And every cough or sniffle in the theater felt magnified to me. Oh well, we all have some adjusting to do.

Last week William completed his continuous 96 hour low-dose infusion of IL-2 (all at home!). He did awesome with a little fatigue being the only side effect. I spent all day Saturday wondering if a fever would spike like it did last time, but he passed each temperature test with flying colors.

Monday morning sent our family scattering in different directions. Ryan's parent's arrived on Sunday and left Monday morning with the 4 younger boys to take them back to Idaho to their home. William and I returned to UCSF for round 4 of the antibody therapy and Ryan went to work.

Thus far, William is tolerating this round quite well. He is tired and his appetite is decreasing, but it's all normal. Today we managed to go to the play room for a half hour and the All-Star room to play on an Ipad for 20 minutes. The nurse told me how rare it is to see the kids get out of bed while getting the antibody and IL-2 combination. This is a good reminder to keep from taking his good spirits for granted. He also agreed to be a part of a research study for a group of doctors and nurses developing a video game app to help assess how children are feeling. Yeah, it was really hard to get him to agree to that one! It aims to be an assessment tool to help children with cancer more effectively and accurately communicate treatment-related symptoms, i.e. pain, anxieties, mood, side effects. The study will help researchers see how parents and children describe the symptoms the children with cancer get. So I got to try out the game/survey too! William loved the game/app and I found it fascinating how our answered differed. I am really excited about this tool and truly think it will help improve patient care. Another cool fact is that The Alex's Lemonade Stand Foundation is funding the project.

William will finish this round on Friday. He'll probably be done and discharged just in time to head home in Friday rush hour. We try not to complain. Saturday morning, William, Ryan, and I hope to get back in the car and head to Idaho for few days and then down to Salt Lake to see my parents and siblings for a few days before heading home for the first day of school. This is supposed to celebrate no longer being to tied to the confines of our home. Yesterday, I presented this plan to the nurse practitioner, who I adore and who trusts me with more than probably most parents. She regretfully reminded me that William needs to be seen by a doctor in the clinic on Monday to clear him to start the next round of Accutane. I had forgotten this and thought he just needed labs that I could draw anywhere and drop off at any Quest lab and the results could be faxed to UCSF. (We've done that before). We've been in this game long enough to know that no plans are ever final and always subject to change or cancellation at the very last minute. But I've also been in this game long enough to know how to fight harder for what is needed and how to make lots of phone calls to involved parties (even if it means jumping the chain of command). I conceded to the fact that if needed, we would stay and forfeit half of our vacation. Then she thought for a moment and said, " Really, I don't care where you see the doctor, just as long as I have the lab results and papers necessary to authorize the start of the medication. Technically, all he needs is a basic physical, preferably from a pediatrician." I jumped on the internet, checked with insurance, made some phone calls, and within the hour I had an appointment with a pediatrician on Monday morning in Idaho Falls and a location nearby of an in-network lab to drop of his blood. So as long and William does not experience any surprising side effects during this week's treatment, we'll be off on an adventure.

Here's to large crowds filled with germs, an immune system to take it all in, and moving a bit outside the box to make it all happen.

We're Coming Out!

2011-07-25T23:47:00.000-07:00

William is officially out of isolation! Well, as officially as his parents deeming the isolation period over. Next Sunday is the official 6 month mark from transplant, but since he is doing so well, we decided we are done...so done. Don't worry. We're not doing anything crazy or careless, like licking shopping carts or sharing popsicles. We're just enjoying the company of large public places that may or may not have roofs. I still carry 3-4 pocket hand sanitizers in my purse, a large one in my car, and several placed strategically around the house and frequent hand washing will probably always be a way of life, at least for me because we know little boys will not do that on their own! But we are once again enjoying places outside our home with our whole family! (Big smile and sigh of relief.)

The final lab results checking the actual function of his immune system won't be drawn for one more week and the results won't be back for another couple weeks after that. We'll let you all know the findings.

We had a glorious weekend all together. We spent Saturday afternoon on the lake with kayaks. We had ours and borrowed a friend's and we all piled in. It was a gorgeous afternoon with lots of kayaks and canoes on the lake. We stopped several times and picked lots of wild blackberries and later made homemade ice cream. Ryan even taught the boys to cliff jump, much to my dismay. However, the "cliff" was about 2-3 feet high and they jumped to Ryan's arms. William still can't swim since his broviac is still in, but he wasn't missing the swimming this time as his brothers were gasping from the frigid temperature of the water.

Saturday night we celebrated Pioneer Day. For those of you not living in Utah (where it is a state holiday) or unfamiliar with the history of the Mormon Pioneers, July 24, 1847, is the day Brigham Young and the first pioneers reached the Salt Lake valley. Each year at this time, members of the Church of Jesus Christ of Latter-day Saints all over the world celebrate this day. We spent a fun evening in El Dorado Hills with all the local LDS congregations. There was a BBQ, bounce house, face painting, pioneer games, waterslide, snow cones, and a band. It was so fun to be as a whole family and when people asked us how William was doing, we were able to say "He's here!" and often point to where he was. William complained that his legs were sore from running around. That makes me happy.

Sunday was wonderful to all attend church as a family. And it was really nice to have 2 adults to keep the boys in line! William enjoyed seeing many of his friends again and showing off his just-barely-long-enough-to-comb hair. He's counting down the days until school starts and even has his clothes picked out for the day. Recently, he has commented several times that he wished the summer was over so school would start. Perhaps I need to record that one on camera!

Today William began his low dose IL-2 infusion. We spent a very long time at the clinic getting some labs test kinks worked out and then due to a shortage of home health nurses, finally got the infusion started around 8pm---at HOME. Despite the mild frustration from all the waiting and delays today, it is all better than being in the hospital. Normally this infusion is started under 24 hour observation in the hospital. However, William previously tolerated the low dose infusion just fine so the doctor cleared us to remain at home pending all other insurance approvals and various hurdles cleared. He'll complete the infusion on Friday night and we are hoping he keeps the typical fever side effect at bay so we don't wind up at the hospital for a late night antibiotic infusion. Then on Monday, Aug. 1st, William and I check back into UCSF for the 5 days of antibody therapy. This will complete round 4 of 5.

Fudging the Line for Summer Fun

2011-07-20T19:20:00.000-07:00

Is there really a line? Perhaps, but it seems harder to see these days. This whole isolation thing is getting old. The only precaution we really seem to obey is avoiding enclosed spaces with lots of people. But we kind of cheated that one by going to IHOP one night for dinner. We justified it because we were the only ones there. And we did sneak William in for sacrament meeting on Sunday (1st hour), but we sat in an adjacent room by ourselves where it was wired for sound.
So William and I are still waiting anxiously to hit the theater for Harry Potter 7 Part 2. I suppose the longer we wait, the smaller the crowds.

The line is also getting fuzzy because this past week has seen the return of a William we haven't seen in 15 months. He's been very active, borderline hyper at times. We took the family to a Rivercats baseball game (minor league team feeding the Oakland A's) last Thursday since we couldn't see the H.P. premier. Sigh. Ryan was given 4 tickets from a co-worker at the last minute (he was going to H.P). We decided to all go and buy 3 more tickets to sit on the lawn. Besides, the weather was so cool all week, it seemed sinful to wait a few weeks so we could enjoy a game in 102 degree heat! William was so sad at first and when we told him he was coming too, he almost didn't believe us. He is so used to being left out or left behind. William, Soren and I took the lawn seats (away from the crowds) and Ryan and the other boys sat in the "good" seats (in the crowd). By the end of the game, William was on cloud nine and the other boys were whining about not getting to sit on the grass. William made it onto the jumbo tron 4 times for his dancing! He just couldn't stop dancing around each time the music played!

Let's hear it for the cheap seats!
July 4th Giants Game
(cheap seats get quite the view!)

Dinner with William after the game!

William misses swimming. William really misses swimming! There's not much I can do to justify him taking a little dip with his Broviac because it's not worth the risk of winding back up in the hospital. This is how we protect his line from water: Aquaguard. For the bath or shower, we usually use two large Tegaderms, but I'm hoarding those right now and I have to do a dressing change after using those because they stick to his dressings.
To fudge the swimming line, I found a website gem in the FamilyFun magazine while sitting in the dentist's office. Mine lacks the artistic touches from the creative genius in the magazine, but my boys wouldn't fully appreciate the time and effort to go that far. Nor do I have the patience. Here's what resulted: Kid Wash!

A Little More Isolation

2011-07-10T22:01:00.000-07:00

Today I need to repent. No need to squirm in your seats. Sorry, folks, it's not that juicy.

As I sat in church today, knowing I haven't blogged all week, I felt a little guilty. Let me explain. I'm over the guilt of going to bed over blogging or spending more time with my family over blogging, or even indulging in a late night bowl of ice cream over blogging. I know I've mentioned in the past when there are gaps in the time frame of posts, things are good and there is nothing significant to report. I need to repent of that statement. Today I realized those are the times I need to express gratitude for blessings because it is during the times of peace that I am reaping blessings.

William's treatment this past week was amazing! Did I really just describe a crummy cancer treatment as amazing? Yikes. But it really was amazing. William was pleasant and comfortable and active. Yes, active. He actually anxiously got out of bed to go to the school room and All-Stars Room (technology room). Okay, so he went to the school room once and the All-Stars room every day. But that is a huge feat for him. He even asked to take a walk down the hall one night around 10 pm. Weird. It was a funny site to see him jump out of bed and start unplugging his IV pole and disconnecting his heart rate and oxygen saturation monitor. A few times I had to remind him he needed to ask the nurse first. But we all loved seeing him that way. One nurse said, "I've never seen him this way. It's great how he seems so normal. We don't get to see that very often." We are truly grateful for the good days, the miracle drug, Neurontin, the Ipads in the All-Star room, Cocoa Puffs and whole milk on the kids menu, attentive nurses and doctors, fogless nights in SF and a room with a view of fireworks, Jamba Juice, EMLA cream (numbs for shots), sisters who babysit, family and friends who pray for us, and a loving Heavenly Father who reminds us daily we are loved.

William's pain was very well managed this time around. He only complained of discomfort on the last night of the infusion. He probably wasn't even paying attention because he didn't realize it until right after he finished Skyping with James. Oh, the value of a good distraction! After a bolus of pain meds from the nurse and pushing his PCA button twice, he was fine. He had no fevers and his blood pressure, when it got low, remained close to the guideline parameters and usually a little movement and waking up did the trick. Whew.

The only significant complication didn't have anything to do with his treatment. His broviac, central line in his chest used for infusions and blood draws, has been acting rather finicky the past few months, making it difficult to draw blood. We often have to make William try myriads of different positions: hands up, head turned left, head turned right, lean over, lean back, lean sideways, stand, sit, jump. One time, while drawing labs at home, Ryan actually held him over his shoulder and we tried to make him upset. I know, that sounds awful, but if the problem is due to his blood pressure, being upset seems to increase the blood flow through his veins. It actually worked that time. We've had some occasional success with trying to keep him well hydrated, but that has also proven not to be a guarantee. Clotting does not seem to be the issue since it flushes successfully. A possible culprit is the tip where the flap-type mechanism is located inside his vein gets lodged against the wall, in the tissue of the vein where the blood isn't flowing as freely. Some of his labs have been inaccurate because the quality of the blood sample is not great. The last day in the hospital, we finally resorted to poking him in the arm the old-fashioned way to get accurate labs. William wasn't a fan, but he's done a lot of tough things and he gets shots like a champ. Hopefully his comfort level with this method of blood draws will improve. The alternative, like removing the broviac and replacing it with a PICC line in his arm for the remaining few months, seems more traumatic than the inconvenience of occasional pokes.

Labs were also drawn for the progress of his bone marrow transplant. As I think I mentioned in the previous post, the result from the first set of labs would determine whether the function test would be done and if the isolation precautions could end. His labs looked fantastic and William's numbers were actually higher than the doctor had expected and he's ready for the function test. Yay! Unfortunately, the doctor became concerned that the antibody infusion may skew the function test labs and it is a very expensive test. Also, when we had talked previously, he admitted he read the dates wrong when thinking we could end the isolation pending good numbers with the first test. He read the bone marrow harvest date (Aug 1) instead of the transplant date (Jan 31). Boo! Since William hasn't met the 6 month mark yet, regardless of the great initial labs, he asked that we endure the last 3 weeks of isolation before the function test and the end of isolation. Rats.

While sharing the news with Lisa, she offered encouragement (because she knows I was trying to justify ignoring the doctor's request). She compared this to the last 3 weeks of pregnancy. They are often the hardest weeks, but in the grand scheme of things, they fly by. Perhaps she's right, but I reminded her that all my babies were 2+ weeks early!

Next item of business:

How long is William's hair?

Long enough to make a faux-hawk!

Happy Birthday, America!

2011-07-04T13:35:00.000-07:00

In honor of the 4th, we all made a valiant effort to wear red, white, and blue. (But several of the boys mixed it up with Giants gear). I wore my Cons. I only do this a few times a year. I also made my first venture into the world of skinny jeans. I paired them with the Converse and William said, looking confused, "You look too young!" Clark commented, "You look cool, Mom. You look just like a teenager." I'm still trying to figure out how I feel about these comments. Perhaps I need to just stick with my fashion safety motto which tells me if I wore certain styles the first time around, I'm too old to wear them the second time they become fashionable!

Last night we had a fun "court/neighborhood" soiree with fireworks and ice cream sundaes. We have fantastic neighbors who were willing to shoot off fireworks a day early with us since William is in the hospital today. The boys loved it and couldn't believe how late they got to stay up! And I overheard Clark excitedly asking, "This is playing with fire, right?" Oh, how he makes me nervous for his teenage years! I'd post pictures, but the camera is with Ryan. Read on.

This morning we packed up two cars and headed to the city. William and I headed to UCSF and Ryan and the boys headed to Chinatown, trolley rides, and a Giants baseball game. It's a fun day for most. Otherwise, this begins round 3 of 5 for the antibody therapy. Hopefully this one is reasonably uneventful and the pain is well managed like last time. And we hope to catch a glimpse from our window of the fireworks at Fisherman's Wharf.

William is approaching his 6 month isolation mark, July 31, and we are getting anxious. He's actually closer to the 5 month mark than 6 month mark, but our recent beach vacation really has us craving the completion of his isolation. So I called the BMT office this past week to let them know we would be in SF this whole week and asked if it would be possible to do the blood work now to save me an additional trip to SF. Can you believe I'm trying to avoid a trip to SF? I also mentioned we'd be back at the end of the month too, but I mentioned it more as a fall back plan. After discussion with the parties involved, they agreed to do the preliminary test and if the number is high enough, CD4 >200 (it was 94 at 3 months), they will proceed with the function test. The function test identifies not only if the B and T cells have recovered in numbers, but if they are functioning properly too. The blood was drawn this afternoon and we'll have results tomorrow. If the CD4 is >200, all isolation precautions will likely be lifted, even before the function results are in. We feel like the horse nearing the stable; we can smell the finish and we know how the road is supposed to look from here, but we still have to pass required landmarks. Clip, Clop, Clip, Clop!

Ryan and I also celebrated our 12th wedding anniversary this past week. Last year we ate take out together on a grimy picnic table in front of the hospital. This year we did the happy dance we weren't in the hospital, (although I did take William to the clinic and the rest of the boys to the dentist that day) and then we headed to they gym where we put the kids in child care and after a treadmill workout, relaxed in the hot tub, sans children! Sometimes it's nice to just celebrate things by slowing down the pace.

Happy 4th! May your day be filled with good food, good company, some sparkly lights, and the freedom to enjoy it all!

Re-Entry from Beach Life

2011-06-28T09:57:00.000-07:00

This is why I haven't blogged for a while: Laundry.

We're in the midst of re-entry back to normal life after vacation. Hopefully the exhaustion we feel is a good indicator of a great vacation! (Also, our beach house didn't have internet---a blessing and a curse.)

We had a wonderful time at the beach, being with my parents and siblings and all their children. Our buckets were filled. Of the 13 grandchildren, William is the oldest and 9 of them are boys. It was wild and crazy and simply marvelous.Most of the days were cloudy and overcast in the morning before the sun made an appearance for the afternoon. This was perfect for William. He was able to run around in the sand and surf without being too uncomfortable or restricted. Due to one of his current prescriptions, his skin is very sensitive to the sun and he must be covered up and slathered up.

By 11 AM he was usually exhausted and retreated to the beach house. The kayak usually coaxed him back out in the late afternoon. It was wonderful to see him be active and happy.

Ryan, William, my sister, Natalie, cousin Sam

His main disappointment was not being able to boogie board and get all the way in the water. Ryan helped him with the next best thing, but standing on a board in shallow surf doesn't give the same thrill.

Early morning crab hunting!

Sunset s'mores!

Medically, things went as smooth as expected, but what we expect is not smooth. UCSF needed additional labs before we left for Newport to make sure William was recovering from his treatment appropriately. His labs earlier in the week showed a few mildly surprising numbers. I drew labs on our way out of town and dropped them off at the hospital lab on Friday morning per instructions. On Monday morning at the beach, I got a call from UCSF explaining that the hospital received the correct orders for labs, but ran the wrong tests. New labs were needed. Luckily we're not new to this sort of inconvenience and I packed the necessary medical supplies needed for more labs, just in case! I spent most of the day making phone calls, leaving messages, and waiting for call backs with insurance and the hospital to get everything in place so I could draw the labs and drop them off locally and then insure the correct results were faxed to UCSF. It all came together and his lab result were perfect. His ANC was back up and everything looked typical. Phew!

My Beach Boys

Rites of passage: ferris wheel ride, ferry ride, sand burying, eating Balboa bars!

Last trip to the pier before heading home. All boys sporting their shark tooth necklaces. (Dad's idea, not mine.)

So I'll finish the laundry this week (cycling it all isn't a problem, it's getting it folded and put away that kills me). Then William and I pack up again and head to UCSF on Monday for another week of antibody therapy. Hopefully the hospital has a good view of some fireworks! (Holidays and hospital stays seem to be our thing.)

Beach Countdown

2011-06-16T22:05:00.000-07:00

William returned home Friday night. As usually, he's tired, a bit cranky, and still skinny. But we're all under one roof and we call that a win!

The official countdown to the beach has begun. I can't even begin to describe the many emotions involved in getting out on this vacation. It will be our first vacation in over 18 months where we will all be together. Well, except for our last minute trip to Monterey for 2 days back in October, but that doesn't count because we stayed within the allowable proximity to the hospital. The weather better be nice because I missed out on last summer's glow and I think we are all due for a little sun therapy. And water therapy because that's really my peace of heaven---swimming in it, gazing at it, listening to it, smelling it. Ahhhh.

I love this:
"The cure for anything is salt water---sweat, tears, or the sea." --Isak Dinesen

I'll be packing an arsenal of medications and medical supplies and hoping it will get little use, as usual. William's labs were a little strange on Monday (surprising dip of ANC, but 2 also different ANC readings off the same blood sample, but performed in different labs), so I'll be drawing his labs on Friday morning and we'll be swinging by the hospital to drop off the blood at the lab. Hopefully this will be all we see of the hospital during this trip. Cameron's fingers are down to just Bandaids on each finger. He still can't go swimming until next week and it looks obvious that he'll loose the nails, but for the moment they are still intact. His fingers tips are still swollen, but all is good and he continues to play hard!

The boys are all excited to see their grandparents, aunts, uncle, and cousins and go boogie boarding. I couldn't help myself and indulged the boys in matching swimsuits and rash guards. I do this every year. One day they will no longer let me dress them alike and know it is coming soon, but until then.... I guess that's what happens when I don't have a little girl with whom I can play dress up!

Beach, here we come!

Never a Dull Moment

2011-06-09T23:00:00.000-07:00

This week has been much better in many ways, but the element of surprise still lingers. William is tolerating this round of treatment much better than last time. The Neurontin is doing the trick with any neuropathic pain, his blood pressure is not dropping nearly as often as last time, and he managed to gain just enough weight to avoid the dreaded NG tube. He continues to spike fevers, but they have been manageable and have only delayed treatment once. He will finish the antibody infusion mid-morning and the IL-2 mid-afternoon and then he and Ryan will high-tail it outta there and should be home at some point Friday night. We maintain a healthy optimism tinged with very low expectations of Friday evening traffic out of the city.

William's weight, or lack of, continues to be an increasing concern. The threat of an NG tube still lingers, but we'll keep shoveling in the calories as best we can. Heavy cream in the Costco sized carton is our secret weapon! I think the miracle in this whole adventure will be if we can get William to gain weight and not give in to weight gaining ourselves.

Being home with the other boys has been almost surprisingly easy. It's been so good to be able to focus my attention on just them and let them have "fun mommy" back instead of "stressed out mommy." We've gone for bike rides, swam at the pool, played at the gym, watched movies, stayed up past bedtime, eaten ice cream, and just slowed down the pace of life. I've enjoyed not having to worry about William...has he swallowed his pills, eaten enough food, drank enough water, taken his temperature, washed hands, completed some schoolwork, gone to the doctor, changed his dressing, hep-locked his Broviac.... I am so grateful for the one-on-one moments I've been able to have with each of my boys to remind them that they are loved so much.

Tonight I was fortunate to spend some real one-on-one bonding time with Cameron...at Urgent Care. I wonder at what point they start to greet me on a first name basis? Cameron got his fingers smashed in a door at church, the heavy solid doors we don't have in our home. I haven't pieced together the accident scene yet, but his fingers were on the hinge side. It was a bloody mess and 3 fingers fell victim to the door. His pinky nail split across the center and the ring and middle finger got the nail root ripped out of the nail bed. The pinky should seal up and heal on it's own, but the other two were numbed while the doctor worked to push the nail back under the skin. It took a bit of work, but the doctor got them tucked back in. Cameron was an amazing trooper and watched the whole thing with interest. Near the end, and only because he couldn't feel the pushing and tugging, he even cheered the doctor on! "Oh, you almost got it that time! This one is harder than the other one." We all had a good laugh.

He'll be bandaged up for the next 5 days or so and can't use his hand at all for fear of popping the nails back out of the nail bed. (gag) He's excited for his splint, glad it's not a cast, happy it looks a bit like a cast, and anxious to have his first dressing change (because William gets dressing changes).

The following picture is graphic and may not be suitable for all audiences, particularly those who can't handle blood. Perhaps I should have more sensitivity, but I don't. So, enjoy!

The middle finger has the best visual of the exposed nail root.
See the white looking corner on the right?
I dare you to click on it for full resolution and then zoom!

All bandaged up!
Hey, Danny, bring back any memories?
Your finger has been requested as a show 'n tell next week!

Round 2 of the Antibody Treatment

2011-06-05T22:39:00.000-07:00

Last week William spent Monday and Tuesday at UCSF under observation while his IL-2 infusion was started. He was then sent home to finish the remaining time of the continuous 96 hours of infusion. A home health nurse came to the house each day to take vitals, draw blood for labs, and change out his infusion bag. All stuff I could have done for free, but sometimes we just follow the rules. He received a low-dose of IL-2 which is basically a drug that helps boost his immune system in preparation to receive the antibody infusion starting tomorrow (Monday). Remember, the antibody flags the neuroblastoma cells as bad so the body's immune system can attack and kill them. All went about as planned; William was tired, felt a little crummy, and struggled to eat large quantities of food to gain much needed weight. Then the unplanned hit. When his infusion finished and I disconnected him, he spiked a fever of 103 degrees F. This can be normal due to the IL-2, but we can't take chances that it could be an infection elsewhere. We called UCSF and then headed to our local hospital where William and I spent a leisurely 5 hours getting antibiotics and labs drawn. Ryan and I were supposed to be out of town on a one night getaway that night, but our plans and babysitter fell through the day before and we couldn't have been more relieved and happy they did!

In the morning, Ryan (it's his turn) and William will be heading back to UCSF until Friday to get the antibody again. However,William will also get a high dose of IL-2 at the same time. The two drugs do not play nice. We've been warned it will likely be even more unpleasant than last time, but we're switching up some of the pre-med dosing and adding in an additional pain med that is more specific to neuropathic pain, Neurontin, in hopes it will go more smoothly.

The only other anxiety causing event is the probability of an NG tube for feeding (up the nose and to the stomach). William started taking an appetite stimulant, Periactin, this past week, but we have yet to see striking results. The doctors feel he needs to gain more weight in order to better tolerate his treatments. Ryan and I agree. He is teetering quite close to his lowest weight again and that ain't much. So although William has serious aversions to tubes of any kind shoved in any orifice, (he's a smart one!) we've explained that it may happen and it will help him feel better overall. He's a trooper and made only one request: Versed. See? He really is smart. He can request drugs by name that prevent any memory of events!

Here's to another week of hospital living. May it pass quickly and be uneventful.

It's an Anniversary

2011-05-28T23:38:00.000-07:00

One year ago our lives drastically changed. It was a Friday. It was the last day of school. The doctor was seen to gain peace of mind for seemingly abnormal swelling in William's abdomen. We got the call. The shock hit. The tears came. We didn't sleep.

It's been a long year of heartache and joys that we could otherwise never have imagined. William has come a long way and he's winning his battle. We have all grown and changed and have a greater appreciation for some of the simple things in life. Our family bonds are stronger and our faith in God is deeper. We have felt the power of prayer and fasting in tangible ways that lightened our burdens during difficult times.

Several of you often ask how William is doing and how he is managing all his aggressive treatments and crummy side effects. William is amazing. Sure, he has some rough days and he asks how much longer he has to do this. He cries and misses being able to do all the things he used to do, but he has incredible patience and acceptance of his conditions. In a recent talk given during April 2011 General Conference, Kent Richards gave a beautiful talk on pain and the Atonement, "The Atonement Covers All Pain." As a surgeon, he talked about the necessity for him to inflict pain daily and then try to control and alleviate it. He said of little children,

"[they] are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones."

He continues:

To all of us the Savior said:

“Behold, ye are little children and ye cannot bear all things now; ye must grow in grace and in the knowledge of the truth.

“Fear not, little children, for you are mine. …
“Wherefore, I am in your midst, and I am the good shepherd." Doctrine & Covenants 50:40-41, 44.

I think this accurately sums up William's capacity to endure. He is humble and meek, patient and accepting. He knows he is loved by his Savior and his many friends and family members and all are doing all they can to ease his burdens.

The same goes for my other four boys as well. They are equally resilient with the constant disruption to our family routines. They often ask when William will no longer have cancer. They pray for his continued improvement. They refer to the past as "before William had cancer" and refer to the future as "when William doesn't have cancer anymore." And they say it as if that's the way every family references the past and future. They've seen the mini doctor clinic set up in our master bedroom and witnessed William experience many unpleasant things in there without crying or wincing (well, shots are never fun, but there's no more fussing about them) and they are amazingly brave when they have their own minor injuries or need shots. The boys often don't know who will pick them up from school, but they've been so well cared for they usually only complain when it's actually me picking them up! They are champs at regularly washing their hands. They still love Macaroni & Cheese (we've eaten a lot this past year), and like other boys, whine and insist on having milkshakes when William gets them.

So here we are, one year later. We're a lot more tired, full of more gratitude, more medically savvy, a few pounds heavier or a few pounds lighter, but still taking it day by day and checking back into the hospital on Monday...again.

May 2010

May 2011

Today

A few days ago

Hospital vs. Junior High

2011-05-15T20:20:00.000-07:00

What could make you want to repeat junior high? Does anyone want to? I was the new girl, we'd just moved from California. It was the '80s. I just got braces. Nothing is flattering about it or particularly memorable, except for the many embarrassing moments.

This blog helps me remember some of the things I would otherwise forget, whether I want to or not. The rest of the days spent in the hospital this week are already a bit of a blur. William spent most of it either in a morphine induced sleep or trying to manage the pain while awake. He did manage to briefly sneak out of his room with his medical student buddy, Josh, to play the Wii in the All-Stars room for 30 min. (A room for older kids to play video games or be on the computer.) Technically he probably shouldn't have left his room since his immune system is not fully recovered, but it was one of those things I just let slide for the mental well being of us both.

Each day we had hopes it would get easier. It didn't. Each day something different decided to make life complicated. And keep in mind that the infusions ran through the night, so most hiccups involved waking up. The infusions were often paused for an hour or two to administer albumin (blood product) and/or additional fluids. He received a blood transfusion one day before the infusion started in an effort to get ahead of the blood pressure issues. Unfortunately, we still had issues that night. He often hit temperatures just over 103 degrees. The toughest part was managing his pain during the night because he wasn't pushing his morphine button in his sleep. Imagine that! The nurses would usually give him an additional bolus of morphine during the night and in the morning as needed.

By Tuesday, William stopped eating except for sips of apple juice to take with his Tylenol and some watermelon at lunch time. He couldn't even be tempted with Jamba Juice. One afternoon his doctor came in and saw him with his watermelon and laughed saying, "No wonder you're not gaining any weight! Where are the calories?" William actually gained 5 pounds in the hospital, but it was all fluid retention and it has since disappeared...as well as 3 more additional pounds from not eating for nearly 5 days.

Thursday was a lovely day. The morning began with vomit, not a typical side effect to this treatment. But it was nice of William to do his best to add excitement to the day, my birthday. That evening, my boys called to sing me "Happy Birthday" and I had to hang up on them. I'm horrible, but it had nothing to do with my mood for spending the day in the hospital. Then my husband called back to see what was wrong and I had to hang up on him too. William had just woken up in a delusional fit and was sobbing. He insisted he needed a sticker right away. He wanted the kind he got when he arrived (he hadn't received a sticker when arriving). He was mumbling a bunch of nonsense, his fever was high, his heart rate racing, and the nurse and I were trying to figure out what he needed. She went and found a Snoopy bandaid and William insisted I hurry and put it on his hand. I did and he suddenly relaxed and all was fine. The boys were all in bed when I finally had a chance to call back. Memorable day.

William and I arrived home Friday night just after the rest of the family had left for the Father and Sons camp out. William and I were excited to have a quite house so we could sleep and rest. Unfortunately, neither of us slept well as my body was freakishly used to waking throughout the night and William was still waking with some residual nerve pain. I spent Saturday cleaning and starting laundry and getting ready for 5 dirty, tired boys to return from camping.

Today, Sunday, any associated pain from the treatment seems to have ended. He started eating a little, but only enough to continue causing me stress that it wasn't enough. I had to put on my tough mom, you're-still-my-son-with-the-same-expectations-as-before hat and tell him he had to eat 4 bites of lasagna before he could leave the table. This was a very lenient expectation compared to what I was enforcing with the others. He sat in his chair and cried and worked himself up until he suddenly threw up. I cleaned him up and said he was done. Then he asked dad if he could have some candy. Dad said sure. What? Was he not sitting at the table through this whole ordeal? He was obviously not thinking, right? I piped in rather quickly and not very amused and said, "No way. But you can have more lasagna." He declined and left the room. I'm bad cop today. A while later I agreed to make him one of my high calories milkshakes, but only because I'm desperate to get some nutrition in him. It is really hard to navigate parenting with a smart, sick child and very smart siblings soaking it all in too.

One day I'll look back on all this and have a lot of mixed emotions. I always thought repeating junior high would be an awful punishment, but I think I'd rather repeat junior high than this. I could change so much about junior high to make it better, but I'm not sure what I could change here to make it better. Like junior high, it's just one of those tough things in life we just have to get through and some how, down the line in life, we're better people.

It Ain't Fun!

2011-05-10T19:40:00.000-07:00

The antibody therapy has begun and it ain't fun.

Here's a quick overview of what is happening:

Daily shots to boost his white bloods cell count which fights bad cells.
The antibody in infused over a 10-20 hour period.
The antibody attaches to the neuroblastoma cells and flags them as "bad" to the body. (Since the body produces the cancerous cells, the body's immune system doesn't recognize it as bad or foreign on its own)
The white blood cells then seek and destroy the flagged cancer cells.

The infusion affects the nerves and can be quite painful. The key is to manage the rate it is infused and the dosing of pain medicine. It cannot be infused faster than 10 hours or longer than 20 hours and a new round starts every 24 hours for four days.

William started out as the trooper he is. This is always a concern because he is so tolerant of pain because he is so used to feeling crummy. The rate of infusion started at 5 which is the 20 hour plan. 10 is the max rate for 10 hours. (I don't remember the units they refer to, but you get the picture, I hope). William was doing well and after an hour, was up to 9. The nurses were impressed and checking his vitals every 15 minutes when suddenly his heart rate skyrocketed and he started moaning and grabbing his chest. Several nurses hurried in and stopped the infusion, reassessed his vitals and explained that he needed to push his pain button whenever he felt pain. The sweet little boy just though he could tolerate it. The rate was decreased in increments, but within another hour, due to his pain, we were all the way back to 5, where we started, in order to get the pain moderately under control.

We coached him on how to push the pain button often and he improved. However, sometimes he was pushing his morphine button more than it actually dispenses the medication and getting frustrated that the pain wasn't decreasing. Then he would stop pushing the button thinking he would just have to ride it out. What a trooper! I keep having to remind him to keep pushing it because it will eventually dispense. It has parameters set to only administer meds every 8 minutes to avoid an overdose.

So obviously, Monday night was rough and neither of us slept much. William made up for it by sleeping until after 3 PM today. He woke up to eat a bit and watch part of a movie. Since the rate was decreased so much and even stopped for part of the time, he was given the antibody over the full 20 hours and didn't actually finish the entire amount. He had a brief break before round 2 started up. So far he is tolerating it well. Sleeping through it helps. His basal morphine (continuous infusion) has been increased and he gets more each time he pushes the button. The rate of antibody infusion is being set no higher than 8. He's at 8 right now and holding.

The side effects he is experiencing are normal: fevers, pain, swelling, and low blood pressure. He is getting precautionary antibiotics because of the fevers and additional fluids to help the blood pressure.

Last night during all the chaos and discomfort, I had a mommy moment where I second guessed our decision to be part of this treatment. I had to remind myself that we have had feelings of peace when making this decision, knowing that it would likely be hard. Ryan and I have felt strongly that we should fight this cancer as aggressively as possible since it is a hard one to treat. If his cancer returns in the future, we will know we fought it as hard as we should have the first time around. The nurse must have seen the anxiety and concern in my face because she calmly reassured me that this was all normal and that she's seen this treatment really work.

On a funnier note, I am learning that all frozen/microwaveable meals are not created equal. I think the presidents of these companies should be on the tasting panels. Or maybe they should think about creating tasting panels. Bleck is all I can say about some Tai Pei sweet and sour chicken mess. Thankfully I discovered the Jamba Juice that was under construction across the street during William's transplant is now done. Hallelujah! Although the 4 block walk to the other one was pleasant too. William will be pleased. I'll tell him when he wakes up.

Gearing Up for the Next Phase

2011-05-05T22:29:00.000-07:00

It feels like it should be the weekend because I'm ready to collapse. I been catching up on doctor appointments for my other children, continuing William's appts., and fielding lots of phone calls to keep the juggling act going and life running smoothly. Ryan has been traveling for work most of last week and this week and will continue as such for a bit. I really can't complain too much because we have been very fortunate that this past year has seen mild travel for him. (Yes, it was reasonably necessary that way). Thanks, coworkers, for sometimes filling in for him. Tonight when I picked him up from the airport, he said, "I am so tired. I think I hate hotel beds more than the hospital sleep chairs." I laughed and replied, "That's because you weren't medicated!" (Ambien is our hospital treat when possible).

William finally finished the round of antibiotics on Monday for his line infection. Thank you, Thank you, doctors, for letting us finish the last 7 days at home instead of in the usual hospital. I am more grateful than words can express. It looks like William is on track for beginning the next phase of treatment tomorrow (Friday). We almost had a small hiccup at the clinic today when the doctor found thrush in William's mouth. Thankfully the thrush and the medication to get rid of it don't interfere with the antibody therapy.

I spoke with UCSF this week on several occasions, but the most significant, noteworthy information is William's bone marrow still appears to be free of cancer cells, and the metastatic legions in his liver all appear to be cancer free. We officially heard the word REMISSION! The doctor referred to it as a "good remission". Now we hope to make it a "full remission" with the completion of all his treatments.

Next Phase:

Friday--begins subcutaneous shots, GMCSF. I'll administer one shot a day for three days before we head to SF. This is basically a "helper medicine". (I'm too tired to dig up the paperwork to go into more detail and most of you don't care anyway.)
Monday--William is admitted to UCSF to begin the antibody therapy. He'll receive a 10+ hour infusion each day for 4 days. It will be painful during the actual infusion and he'll have the magic PCA button to manage and maintain his comfort.
Friday--he'll head home and continue the shots for a week.
Somewhere in there he'll start taking the cis retinoic acid (similar to Accutane, but we're not treating acne here). This will give him all the same side effects as Accutane. He won't be sporting a healthy summer glow this summer.
Then he'll be admitted again (just overnight) to receive another "helper medicine"and then hopefully sent home to finish the several days of that medicine, but that will be pending the ability of our home hospital agency to provide a nurse to visit each day to assess William. (Oh, please let this work out so he won't have to spend the week in the hospital.)
Then we start the process all over again and continue for 5 cycles (1 cycle=approx. 1 month).

Delayed

2011-04-27T21:30:00.000-07:00

Tuesday was a long day in the car, traffic, and San Francisco. William had another bone marrow biopsy and aspirate along with lots of blood drawn as part of the next phase of treatment. A lot of the blood and bone marrow samples will actually be used in ongoing research of neuroblastoma cancer. We felt strongly about participating in the studies since it only required blood and bone marrow, both of which were being sampled that day anyway. We are so grateful to the many neuroblastoma children before William who have paved the way for us to have some of the newest treatments available today.

William's recent stint in the hospital was an obvious hot topic in SF. After reviewing the timing of his current antibiotic treatment and the scheduling of the antibody therapy, it was decided to delay the antibody therapy by one week. I suppose we expected it so it didn't seem like such a shocking blow, but it was just an ever constant reminder that we must always schedule our lives in pencil. The main factor contributing to this decision was that some of the common side effects of the treatment are similar to the infection he is recovering from and the doctors want to make sure he is fully recovered so the culprit of any side effects is obvious. Makes sense.

The good news is the antibody therapy schedule will still not interfere with our family reunion/vacation to Newport in June! [Happy dancing and sighs of relief]. That was really the only thing that worried us. I know, priorities. But we all need to escape some reality from time to time.

When we got home from SF last night, I felt emotionally and physically exhausted from the hectic ups and downs of the past week. I looked at the huge pile of clean laundry on my bedroom floor that needed folding (it's been there since Friday) and just climbed into bed and ignored it. I know constant flexibility is nothing too new for us, but we were becoming accustomed to a slightly less unpredictable lifestyle. William was worn out too. The anethesia probably had a role in that, but he made a funny request as we drove up to the house. "Mom, when we get home, I'm going to go find my new tennis racquet and then sit on the couch and just look at it." And he did. Funny boy.

Antibiotics at Home

2011-04-25T22:14:00.000-07:00

Sunday afternoon during church, William texted me to announce his negative blood culture result. (This is a good thing). However it was just the 24 hour culture. We needed the 48 hour culture to be negative as well to be able to start planning a date to come home. I was relieved, but still anxious. After church, we had a quick Easter egg hunt in the backyard. It just wasn't as fun without William and Ryan there. For me, it was more of a chore to get it done. I was so exhausted Saturday night after leaving the hospital and Sunday wasn't much different, so I nixed any traditional Easter meal and made crepes. I was temped by cold cereal, but the guilt got me just a little. I didn't even get out the Nutella [Gasp]. I told the boys their only option was syrup. I was that tired.

Today I packed another suitcase to relieve Ryan at the hospital. But I packed not knowing if I'd be home in 1 day or 12 days, pending a possible transfer to UCSF to continue his antibiotics and then the antibody therapy. Ryan repeated our plea to the doctor this morning that we could handle IV antibiotics at home. The doctor agreed as long as the pending culture was negative and UCSF agreed.

William arrived home late this afternoon! He and the boys bolted from the car to find their tennis rackets and ran out into the front yard/street (we live on a court) to play. It seemed wrong to go from laying in a hospital bed, unable to leave his room, to running all over the place outside. It was beautiful! Even the home health nurse commented how good he must be feeling when she came over to show me how to administer the antibiotics with a syringe pump.

William and I head to SF in the morning for another bone marrow biopsy and other labs. I think I'll love the drive even more knowing we get to return home in the evening.

Getting Too Comfortable

2011-04-22T20:57:00.000-07:00

Just when we were settling into some warped sense of normalcy, William spiked a 101.1 degree temperature yesterday afternoon. I took it multiple times with varying thermometers in various places. I like to think I'm thorough, not desperate. There was no way I could pretend he was just extra warm from laying under a blanket. (I made him remove that and sit for a bit before rechecking his temperature). He was also unusually lethargic. I made the call. I got the expected answer. I obeyed. Darn it!

When William and I arrived at the hospital his fever was gone. Darn it! But I did a little self-talk to reassure myself that I did the right thing in bringing him in. Thankfully the doctor gave orders to treat him as outpatient since he was not neutropenic. Labs for blood cultures were drawn (to detect an infection), a round of antibiotics were administered, and we were sent home around 11PM. Yippee! I celebrated with cinnamon twists from Taco Bell on the way home. William slept.

William went to work with Ryan today because William had his MIBG scan at the hospital and with the boys on spring break it was just easier for Ryan to take him today. And it was a good excuse for Ryan to come home a little early too. I spent the day on the hunt for paint colors for a boys bedroom while towing around 4 boys that really needed to run at the park. For those that know our home, the Winnie the Pooh mural from the previous owner is finally being dealt with! With all the time not spent in the hospital, Ryan and I are starting to get the projecting/DIY itch. I planted our garden a couple weeks ago and planted flowers in the front yard this week. I also painted doors and door casings on new doors we had put in during a minor remodel 2 years ago, but never got around to painting. When Ryan got home with William, we start putting up paint swatches. Then the call came. The blood cultures came back positive for infection and William needed to come back to be admitted to the hospital. We packed up the paint for another weekend and packed the suitcase.

William has never had a positive blood culture for all the countless times he's been hospitalized with a fever. I suppose this could be a rite of passage---one thing we hadn't experienced yet. Perhaps we can gain increased empathy with this....

It's been 2 months since William has been inpatient. That was when he was discharged after transplant in San Francisco. It's been since November 21 when he was inpatient here in Sacramento! That is amazing, but it doesn't feel good to be back. However, it is nice to see our nurse friends that are so great. Oh, and one perk of being a bone marrow transplant patient is a private room. It may be the only perk, but it's a huge perk!

I know very little worth mentioning about the infection and the length of this stay yet. Tomorrow morning I will smother the doctor with my questions. The nurse said there is a chance he'll only be here 4 days, but it could be 10. My problem with all that is on Tuesday William is supposed to be in SF for a bone marrow biopsy where additional samples are to be drawn as part of the antibody therapy. Also, he is supposed to be admitted to UCSF a week from Monday as part of the antibody therapy. This pesky infection is putting a wrench in my nice little schedule I thought I could schedule. I also worry about the timing of the antibody study being thrown off. I worry about... stop. I can't worry about what I can't control, but I do.

The other bummer of the day is that Ryan and I were planning on surprising the boys by taking them to the drive-in tonight to see Rio since William can't go to theaters. Oh well. We're flexible like that.

Side note: The lab results for labs drawn in SF earlier this week to see how William's immune system is recovering won't be ready until Monday. The doctor didn't think it was likely that the restrictions/precautions would be lifted until the 6 month mark (end of July).

Pick Up the Pace

2011-04-19T17:32:00.000-07:00

I suppose I'm due for what is becoming my weekly post. Rest assured, the pace is about to pick up. The brief hiatus we have just enjoyed ends tomorrow. It was only a week, but a calmer than usual week. William and I head back to San Francisco bright and early in the morning to meet with the BMT (bone marrow transplant) team. William will have labs drawn to check the function of his B and T cells. This is the cell development that keeps him in isolation and out of public places. In talking with the nurse this morning, I learned that it is possible that the cell function has recovered enough to lift all restrictions. They are looking for a series of specific numbers/levels that signify his recovery. I also clarified that it is an all or nothing scenario: all restrictions remain or all restrictions are lifted. From the beginning we were told isolation would be 3-6 months and to plan on 6 months. So we are. Tomorrow is just the 3 month mark. We have no expectations, just hopeful anticipation.

Thursday and Friday keep us in Sacramento for an MIBG injection and scan and Echocardiogram. Monday has a CT scan and Tuesday sends us back to SF for another bone marrow biopsy. Then William gets a few days of break before check in on Monday in SF for his 5 day stay for the Antibody therapy. (see previous post for details). It's all good and one day I'll miss this part of my children's childhood. No, I won't!

On Tuesday mornings I participate in a phone-in support group for parents of recent BMT children in SF. It's an interesting experience and takes some getting used to the conference call environment. Each time I participate, I feel a little awkward as most of the family situations are ones I can't relate to. I am often reminded how fortunate we are with all the love and support we receive. We all have trials and struggles. Some are a result of our own poor choices, but others are simply unavoidable parts of life that can only make us stronger if we keep the right attitude and perspective. At the end of the day, I'm glad I have the trials I have and not someone else's. Many of the parents are single parents, the ages of the children varies from a few months to 17 or 18 years old. Some had the transplant due to cancer, some for other diseases. For one mother, this is her second child with cancer and the first one lost its battle. What amazes me is despite our various circumstances, there is an overwhelming sense of hope and resilience in these parents. As hard as life may be right now, it is only temporary. The sacrifices and struggles we face on a daily basis make the journey and anticipated end goal, short-term or long-term, so much more worth it.

Antibody Overload

2011-04-12T23:11:00.000-07:00

The week without daily radiation appointments has been great, except for the horrendous allergies. All the boys, including Ryan, have been suffering. I'm feeling dandy. William has been the worst with swollen eyes and dark circles under them and a runny, runny nose. Of course we've had a few panic moments that he was getting sick, but no fevers yet and allergy meds are helping.

The past few weeks have also been frustrating because our clinic visits felt unproductive and unnecessary. Questions about upcoming treatment weren't being answered by our local oncologists saying it was San Francisco's call and the BMT (bone marrow transplant) team was saying they were no longer really in the picture since William is almost 3 months post-transplant and we hadn't met with our SF oncologist yet to consult and consent for the next phase of treatment. With multiple different treatments in both Sacramento and San Francisco, we've been under the care of four different teams of doctors so it sometimes gets complicated keeping track of who dictates what. We've recently felt in limbo, not having a clear plan in place, yet knowing more treatment was coming soon, and feeling glad, in a weird sense, that no one seemed very concerned about William's course of treatment. To us that means he's become a boring case. And that's a good thing.

Today, the much anticipated meeting with Dr. DuBois, our SF oncologist, to discuss the antibody therapy finally happened. Ryan and I walked out of our meeting with him with an overwhelming sense of peace, happiness, and direction. We have answers and a plan and most of all, a doctor who said he's taking charge of William's care starting today and he would take care of notifying all parties involved. William can stop taking 2 of his medications, he doesn't have to go to clinic visits for a couple weeks, I can stop drawing blood for labs and driving them to the hospital twice a week, and all the scans and test will be scheduled and completed in SF in a couple weeks, right before treatment begins. Life just feels slightly simplified for the next week or so.

What is the next course of treatment?

Chimeric Antibody 14.18 (Ch 14.18) with GM-CSF, IL-2 and Isotretinoin

What is that?

It is a clinical trial for high-risk neuroblastoma children which has been going on for awhile and is now waiting on FDA approval.
It is now the new national standard of treatment for high-risk neuroblastoma patients following bone marrow transplant and radiation.
The antibody (Ch 14.18) and Isotretinoin are given in series over the course of 6 months.

How is this study different or advancing current high-risk neuroblastoma treatment protocol?

Standard treatment is to take the drug, isotretinoin (Accutane or 13 cis retinoic acid), by mouth for 6 months.
A recent study compared the new experimental regimen (antibody therapy) to isotretinoin alone and found that the experimental treatment worked better than standard treatment to help get rid of any remaining neuroblastoma cells.
Two years after treatment, 66% of patients who received the antibody therapy were alive with no signs of cancer, compared to 46% of patients who received the standard treatment.

Why does William need this after all he's gone through and the tests and scans finally show no evidence of disease?

William's disease is hard to treat and often resistant and needs very aggressive treatment. His diagnosis of "High-Risk" neuroblastoma is in part due to his age at diagnosis (rare to be over 5 yrs old), it had already metastasized (spread) at diagnosis, and during the course of treatment, the cancer cells were resistant, needing 2 additional rounds of chemo and MIBG therapy and cancer cells were still present right before transplant.
The technology and accuracy of the tests and scans to detect cancer cells has limitations and may miss some microscopic cells. One active cell is enough to grow the cancer again. This treatment focuses on the microscopic cells (minimal residual therapy).

How does this therapy work?

The human immune system contains many different antibodies to attack germs, bacteria, etc. However, because cancer is produced by the body, it does not recognize cancer cells as "bad".
Ch 14.18 is a monoclonal antibody, meaning a protein made in the lab, designed to attach to specific targets on cancer cells. This particular antibody is part mouse, part human. Yes, we agree it sounds crazy! We are promised William won't grow a tail or whiskers.
Ch 14.18 is designed to attach to neuroblastoma cells. When it attaches, the body's immune system is stimulated to attack and kill the neuroblastoma cells. (It flags the neuroblastoma cells as "bad")
William will be infused with this antibody for approximately 10 hours a day for 4 days at UCSF. This will occur approximately once a month for five months.
The cis-retinoic acid will also be administered during these months according to the trial instructions. (I'll spare you the boring details).
The sixth cycle will only be the oral cis-retinoic acid which is administered at home.

Side Effects

There are lots that are similar to all the side effects he's experienced through this whole process. (again, I'll spare you the long list of likely, less likely, rare but serious).
Pain, an internal aching, is the most common with the antibody infusion and it will be carefully monitored with the aid of a PCA button (patient controlled analgesic). If the pain is too much or other side effects arise, the infusion will be paused until the pain is properly controlled. Once the infusion is finished, the pain immediately ends.

When do we start?

Next round of hospitalization begins May 2nd.

Good News

William will be able to go on our annual family reunion to Balboa/Newport Beach in June!
He'll have to stay out of the water, sand, and sun, but we'll all be there together, on vacation!
He'll be admitted back to the hospital the Monday after we return.

Closing Thoughts

Ryan and I feel confident and peaceful about pursuing this course of treatment. We feel blessed and fortunate to have these cutting edge treatments readily available to us within feasible proximity to our home. In the end, we will know we treated this cancer with everything available from the beginning.
We are so grateful for the brilliant minds that continue make progress on the neuroblastoma front and the brave children that fight the hardest battles.

There's A Party Going On Right Here

2011-04-05T22:31:00.000-07:00

WILLIAM FINISHED RADIATION!

So we celebrated with food! It's what we do. Besides, William lost a pound last week (totally normal for appetite to decrease during radiation). The rest of the boys requested that In 'N Out not be an option. Oh, what does that say about our lives? So William requested a marinated flank steak, rosemary-garlic potatoes, broccoli, and chocolate cake. I agreed and it was all a success due to the unfortunate lack of leftovers. I didn't take a picture of our dinner because it disappeared too quickly. However, I did confirm that layered cakes and I don't mix. No matter how I try and trim and level, my top layer always begins to slide. Oh well, that's why I have boys. They will never fully appreciate the cosmetic appearance of my cakes. After struggling with the "Leaning Tower of Cake", I bagged the idea of piping a radioactive symbol on the top. We went with the always pleasing glow sticks!

In other exciting news...

We'd like to thank the amazing Hakes family for providing a good workout for William and a lot of fun for all the boys---all 6 of them! It snowed! Right in the middle of our front lawn. Thanks for the laughter!

Yes, we have a trampoline in our front yard.

I Love You, Grandpa

2011-03-27T23:00:00.000-07:00

I love this time of year. I love spring. Although if you live where we live, you might wonder when the winter weather would pack up and leave. I really shouldn't complain because I don't have to shovel anything. I'm just a California wimp and proud of it! But I also love this time of year because of General Conference. Each year, during the first weekend of April and October, members worldwide of The Church of Jesus Christ of Latter-day Saints gather to listen to the prophet and other leaders of the church give instruction during 5 tw0-hour sessions over the course of Saturday and Sunday. It is broadcast worldwide via satellite, television, radio, and internet. It is awesome and uplifting and the counsel and instruction is so relevant to today. So next weekend I'll be listening to some Mormon Tabernacle Choir and good words. Oh, and eating cheese souffle and cinnamon rolls because that's the family tradition.

One day I hope to publish this blog for my children. This is my journal. I hope they find comfort, strength, love, peace, humor, understanding, courage, but most of all, faith and testimony. I want my children to know of my love of God, our Heavenly Father and His son, Jesus Christ. I want them to know of my faith in their reality and their love for me and each of them individually. I hope they see the miracles and tender mercies we have received. I want them to know that I know we are here on earth as a family for a purpose as part of God's eternal plan. I believe trials are evidence that the Lord feels we are prepared to grow more. And I hope we are growing well. "[Heavenly Father] and His Beloved Son love us perfectly. They would not require us to experience a moment more of difficulty than is absolutely needed for [our] personal benefit or for that of those [we] love." This quote if from one of my favorite talks on trials and adversity, Trust in the Lord, given by Elder Richard G. Scott, in the October 1995 General Conference. He instructs,

"When you face adversity, you can be led to ask many questions. Some serve a useful purpose; others do not. To ask, Why does this have to happen to me? Why do I have to suffer this, now? What have I done to cause this? will lead you into blind alleys. It really does no good to ask questions that reflect opposition to the will of God. Rather ask, What am I to do? What am I to learn from this experience? What am I to change? Whom am I to help? How can I remember my many blessings in times of trial? Willing sacrifice of deeply held personal desires in favor of the will of God is very hard to do. Yet, when you pray with real conviction, “Please let me know Thy will” and “May Thy will be done,” you are in the strongest position to receive the maximum help from your loving Father....To recognize the hand of the Lord in your life and to accept His will without complaint is a beginning. That decision does not immediately eliminate the struggles that will come for your growth. But I witness that it is the best way there is for you to find strength and understanding. It will free you from the dead ends of your own reasoning. It will allow your life to become a productive, meaningful experience, when otherwise you may not know how to go on."

One of the great examples to me of adversity without complaint and remarkable strength and faith is my Grandpa, H. Smith Shumway. He peacefully passed away on Saturday afternoon at the age of 89. He was amazing and I can only imagine the joyful reunion in heaven as he was reunited with his wife and daughter and many other loved ones. Grandpa landed on Omaha beach in Normandy, France during WW II on D-Day in 1944. He was blinded by a tank explosion nearly 6 weeks later when he was 23. After the war, he returned home and married his sweetheart and raised 8 children. He found the blessings in his trials and made weaknesses his strengths. He was amazingly independent and the story of his proposal to my grandmother is often retold, "If you will sort my socks and read my mail, I'll do all the rest." And he did. Well, she drove the car too! I am grateful for his optimism and faith in the gospel of Jesus Christ. And I also think it's cool that he let me hold his eyeballs when I was young. I love you, Grandpa!

William and Great-grandpa Shumway in Nov. 2009, 6 months before William's diagnosis

All the boys with Great-grandpa Shumway in July 2009

In Normandy, France at Omaha Beach in June 2004 for the 60th Anniversary of D-Day

Remission Correction

2011-03-24T22:10:00.000-07:00

Today's weekly oncology clinic visit went well. Except for the fact that I was so focused on getting copies of all the printed test and scan results, scanning them for anything I might want to talk about, I forgot to ask about the big R---remission. I called back and asked the receptionist (she's new, bless her clueless heart) to relay the question to the doctor. The relayed response was... No, he is not quite considered in remission even though the bone marrow is negative. And then she said something about labs being done. I'm assuming she meant more labs need to be done to determine that because I am hoping that if current lab results indicated something I should know, I would have been told. But that is often an enormous assumption.

With all that out in the open, we are still thrilled with a negative biopsy result, regardless of the terminology used to describe William's current state. We are grateful for the outpouring of shared sentiments of joy and gratitude. I was asked how long I cried after hearing the news. I didn't. I still haven't. Nothing about our daily lives changes. We still go to the oncology clinic once a week, draw labs twice a week, head to the hospital for radiation every day, administer several medications 2-3 times a day, juggle who cares for the rest of the boys, and anticipate the unexpected at any time. Perhaps I'm becoming emotionally callous with all the roller coasters we've been on. Our guards are still up a bit as he still has months of treatment to endure. But yes, we are breathing deep sighs of relief at this point. It is wonderful and miraculous and exciting and relieving. It is progress.

Radiation continues to go well and the routine has settled into a standard 20 minute appointment each day (plus the 1 hour commute time). William is a trooper and loves getting in and out so quickly, but he did get sad the other day when I mentioned he'd have to do some schoolwork when we got home from the hospital.
William: Why can't I just have ONE day without hospitals, doctors, or homework. I just want to sit and relax in quiet at home?
Me: That happens on Saturdays and Sundays.
William: No it doesn't. My brothers are home and they are always loud and crazy.

Here's a brief clip of the set up for radiation. He lays with his legs in a customized mold to make sure he is positioned correctly each time. The green lasers are used with the tattoos on his abdomen to line everything up just right. They also made some additional marks on his torso, but they will wash off after treatment is complete. The video shows William getting the quick CT scan right before radiation begins each day. I can't be in the room for the actual radiation zap, but this will have to suffice to give you all a visual. The cancer center is brand new and the equipment looks so beautiful and new and high tech and clean. What more could I ask for?

The Unexpected and a Celebration

2011-03-22T23:08:00.000-07:00

I'm off my game. The break from hospital life has been good, almost too good. Radiation treatments began Monday and all went well. It was a little long since extra scans and measurements were taken and William's bone marrow biopsy sites are a bit sore from laying on a hard surface, but it was all good. That is until we began driving home. I got an unexpected reminder that I was unprepared. As soon as we started to get on the freeway, Soren, 4, informed me that William was throwing up. Poor kid. He's such a pro at it that he didn't even tell me he felt sick, hoping he could just get it under control by himself, and then proceeded to vomit in near silence. We stopped and I got him cleaned up and the mess cleaned up too. Thankfully, I still keep plenty of Clorox wipes and baby wipes stocked and handy. I found a grocery bag for him and we set off for home again. Unfortunately, he had to continue using it for the duration of the 30 minute drive home. Once home, Zofran worked its magic. Thank you, my friend, Zofran.

The nausea was likely caused by the fact that the left side of his abdomen is the primary radiation site and home to his stomach. Today I pre-medicated with Zofran and all went well. The doctor assured me that the pre-meds should be sufficient to manage the nausea. I'm getting a new prescription anyway, just to be sure I have an ample supply for the future.

Also, while meeting with the doctor today she mentioned having received the bone marrow biopsy results YESTERDAY! I love how notifying the anxious parents is an oversight.
Me: "No, I haven't heard. I was hoping to make a call this afternoon."
Dr.: "Yes, they're negative."
Me: "Really? It's negative? It's negative! This is our first negative biopsy."

Tonight we celebrated! We celebrated in William style: In 'N Out and homemade chocolate chip cookies. I threw in some helium balloons and we all shouted hoorays around the dinner table for William's bone marrow and then for each of the boys being so great through everything.

Although we haven't heard the term used officially, I believe this is when we can finally say he is in REMISSION. He is in remission. It feels so good to say and believe. We are celebrating and continuing on to make sure Doohickey doesn't come back!

Long Week Makes Long Post

2011-03-20T23:30:00.000-07:00

But at least the week is over!

Thursday began with a clinic visit and a happy reunion with one of his best hospital friends, Spencer. It was fun to catch up with Spencer and his mom---so much so that I completely disregarded, well not completely, his isolation precautions and let William go mask-less while hanging out with his friend. Spencer was getting admitted for his last chemo! Hooray!!! He'll be done with treatment as his road map doesn't include radiation or any other therapies. Awesome! We're jealous, but so thrilled for him and his family. It is strange to have friends go through this process and actually reach the finish line. It is crazy to realize how intense the past 9 months have been and suddenly there is this light at the end of the tunnel and we're running faster toward it. William's ANC reached 2400 which gives the green light to proceed with radiation on Monday.

Thursday also included another bone marrow biopsy and aspirate. I would roughly guess that it was his 10th or 11th time getting one of these. William looks great and even had a few nurses come in and oooh and ahhh over how amazing he looks for not even being to his 100 day mark post transplant. The biopsy was uneventful with the usual delays and such and per William's usual request, the anesthesia part was video tapped. We are anxiously awaiting the results on Monday or Tuesday and hoping to receive "negative" results for the first time---negative for cancer cells. I haven't even bothered to ask what we do if results are positive. We'll address it if it becomes our reality.

Thursday couldn't end soon enough though. Not long after returning from the hospital with William, while picking up the boys at a friend's home, Soren managed to tuck his toes under the end of a treadmill just in time for his brothers to turn it on. It was gory enough to necessitate a trip to Urgent Care. Of course Ryan's plane from Portland was delayed 2 hours so I had to make another last minute call to a wonderful friend (I have the best) to come watch the boys while I headed off to see another doctor with another boy. The doctor assured me my visit was "appropriate". It's probably a job requirement to make the ridiculous co-pay feel justified. Soren suffered 2nd degree burns on both big toes and was terrified of the possibility of getting a shot.

Soren: Am I getting a shot?
Dr.: No. I promise you aren't getting any shots.
Soren: Do you give shots here?
Dr.: Yes, sometimes, but you don't need one.
Soren: Where are the shots? Are they in here?
Dr.: No. We keep them in another room.
Soren: Are there any in the cupboard or drawers?
Me: No, Soren. There are no shots in this room at all.
Soren: Oh.

He relaxed and became quite enthralled with the details of his burn dressing. He insists his "supplies" are put in a special place by William's medical supplies. He loves to remind me when he is due for Motrin, told me he thought he needed a blood transfusion (he has no idea what one is but knows William gets them), and likes to wear a mask when I do his dressing change because William wears them for his Broviac dressing change. It's cute and hilarious. Here's a lovely photo. Warning: it ain't pretty.

The Donut Dash was a success. Success is measured by the amount of people that show up and/or donate to the cause and by the lack of rain. The rain started back up 15 minutes after the last racer crossed the finish line. Amy and Ryan did great and Ryan brought one of his four donuts home for the boys. He was sick after eating 3. Here's the start of the race for your viewing pleasure. Take a look at the 2:06 time marker at the guy who runs up to the camera in a white T-shirt with a black long sleeve underneath and a beanie. But don't stop watching, the camera turns and the fame chaser turns around and looks back! I just love him!

William's name is near the bottom on the left under the "In Honor of" section. Thanks Amy (and all your generous friends), for raising so much money in his honor!

We plan on making this an annual family affair and continue to give back to an amazing program that gives so much.

With the week finally behind us, we move on---on to Radiation.

p.s.

Happy 1st Birthday, Sweet Eliza!

Donut Dash III

2011-03-13T17:56:00.000-07:00

On Saturday, March 19th, 2011, Ryan will be running with a good friend from our college days, Amy, in the annual Donut Dash. The race benefits the Child Life Program at Sutter Children's Center in Sacramento. It is a 4 mile race through the beautiful, shady neighborhood of Land Park. The race is a 2 mile run, jog, or walk to Marie's Donuts, eat 4 donuts (or 6 donut holes) and then 2 miles back. You can find all the details at donutdash.org. Oh, and you can just donate to the program too if you don't want to run or eat donuts! But where's the fun in that?

We LOVE the Child Life Program and owe an enormous amount of happiness to them. It is the Child Life program that has provided many toys, blankets, art projects, movies, music, Wii tournaments, and various incentives to help motivate William through some crummy days. They've also been an incredible support system to me and Ryan as we also had some crummy days. We adore our Child Life friends and will always be grateful for the special roles they've played in our lives. Millie, the dog, is a part of the Child Life Program too. It is truly remarkable to witness the joy and sense of calm she brings to William and the other children.

I'll be cheering from the sidelines with the rest of the boys (William can't be in crowds so he'll likely be absent). Amy's been training on the treadmill. Ryan just started his training yesterday by bringing home donuts for breakfast! Go TEAM!

Teaching Moment

2011-03-09T10:00:00.000-08:00

As a parent, we look for teaching moments. Some are more welcome and comfortable than others. Sometimes we're well prepared and other times we're caught completely off guard and grasp for any sensible or ridiculous facts. I was prepared for Monday's teaching moment, but a year ago, didn't think the practical application would come for at least 10 more years or ever, for that matter. Monday's lesson: Tattoos.

William finished off his meeting with the radiology oncologist with three tattoos. One dot each. He winced and complained and was not a fan. It was awesome!!! I wish my phone battery hadn't died so I could have video taped it for posterity and to remind him in later years how unpleasant he thought it was. We had a lovely conversation discussing the hundreds of needle pokes and likely pain an artistic tattoo requires. He was not impressed. I'm crossing my fingers that it sticks for life. The lesson, not the tattoos.

midline

right side (freckle?) It's the one in the middle.

left side

The tattoos are simply markers for the radiation machine to insure the proper areas are radiated. They are what they are and we move on. Radiation will begin on the 21st and he'll endure 12 cycles. (1 cycle/day M-F). It is a fairly low dose so the side effects should be mild, the most likely being fatigue. He's already always tired so that doesn't change anything.

This week and next week he is getting the long list of tests and scans to assess his progress after the consolidation phase (transplant). I received the call Tuesday afternoon informing me of the times William needs to be at the hospital on Wednesday and Thursday. I scrambled to cover childcare bases and when we arrived at the hospital this morning for a CT, audiogram, and bone scan, I was informed that they had no record in the system for the CT and bone scan. By the way, William was fasting for this and he's not supposed to be in public places with lots of people. I was so frustrated, but tried to remain pleasant since the people I was probably allowed to talked to were not the culprits! After several phone calls and spending over an hour dealing with the mess, we were rescheduled for Friday for the CT and bone scan. What a headache. I'm really not going to miss this lifestyle. Really! Really!

Here's the upcoming schedule:

Thursday: GFR (kidney function), clinic visit, 2 blood draws, EKG, and Echocardiogram.
Friday:CT and bone scan.
Monday: bone marrow biopsy (still waiting for confirmation).
Wednesday: IVIG infusion in SF.
Thursday: MIBG injection.
Friday: MIBG scan.
Whew.
Monday: daily radiation begins.

Goodnight!

To my friend...

2011-03-06T22:00:00.000-08:00

I think about blogging every day. I have plenty to blog about. I'm just so tired every night.

Here's how William spent Saturday afternoon (after a couple hours of Wii).

Being with James makes him feel normal and forget about things that have changed. While I was discussing our family with a nearby mom, William chimed in, pointing to James, "Some people think we're brothers, because we look alike, but we're not." I love that he doesn't realize that James has grown a foot, gained 30 lbs., and has enough hair for the both of them.

Cancer update:

Monday morning we meet with the radiation oncologist to be presented with his radiation plan. Assuming we accept it (duh), we'll get the tour of the machine and initial measurements will be taken for his positioning, etc.
CT, bone scan, MIBG scan, and bone marrow biopsy to be scheduled soon. Hopefully this week, but I have yet to be notified of appointment times. Yes! I love living like this.
I continue to draw his blood at home for labs and Ryan drops them off at the hospital. This eliminates unnecessary exposure to harmful germs at the clinic.
Still waiting for the ANC >1000 to start radiation. The ideal window to begin radiation is by March 14th.

So, my friend, you can stop the calls and texts with idle threats and complaints of having to look at "Derby Days" another day. But don't stop calling and texting because you make me laugh. I'll text you now to let you know this post is up!

Derby Day

2011-02-24T23:00:00.000-08:00

William is on cloud 9! Why? His Pinewood Derby car won 1st place in his Bear den last night!!! It was awesome. Last year's race memories include many tears and me trying to explain I was to blame for not getting the axles on straight. That was the first of 20 cars we will be making over the next few years. Lesson learned. Enough said.

William and Ryan carved and painted this year's car before transplant and I fine tuned the wheels and axles before the big day. William was bummed he couldn't go because he can't be in crowds/public places, but seemed just fine as long as Ryan took the car to race and promised to video tape everything. Then I started thinking.... What if he waited in the car until the races started, sneaked in the back door, sat on the stage away from the kids, wore his mask, and then quickly exited after the races? It could work. Right?

William and I made a trip to San Francisco on Wednesday for a check up with the BMT doctor (bone marrow transplant) and presented the predicament and our solution. William and I both assured the doctor that the Pinewood Derby was not a family priority. William is such an amazingly patient and adaptable boy. I just love that about him. The doctor laughed and said not to ask such things because they technically have to say no. But then added (quietly and unofficially) that she didn't see why it couldn't work as long as we were aware of the restrictions and took precautions. We went for it. It all went smoothly and the joy on his face when he won so many races made it worth it! Thanks, friends, for staying away from him.

His perch

The gray car is William's
(minus the Lego guy that was yanked at the last minute due to weight restrictions)

With Lego guy

Back to our San Francisco appointment. William kindly reminded me that I have to be prepared for everything with him. I have slacked off a bit and did not travel with his meds or pink bucket. Thankfully, his lunch box could be dumped in a second and doubled as a barf bucket. At least I still travel with baby wipes, Clorox wipes and hand sanitizer. Disaster averted and he wasn't allowed to read or play his DS during the return trip and Zofran was administered at home. At the appointment, all went well and William actually gained a little over a pound since discharge 5 days earlier. (I am skeptical since it wasn't the same scale, but whatever). They drew his blood for labs because of some low numbers from Monday's labs and wondered if he would need a platelet transfusion. Nope. He had a tiny increase, but an increase means he is producing his own platelets and at a rate faster than his body is using them up. This is all good news for his beat up bone marrow. They decided to discontinue his nightly I.V. hydration to see how he does on his own for a few days. His ANC is at 980 which means he's almost to the 1000 he needs to reach and sustain for radiation to begin. It's all progress and we'll take it.

We meet with our oncologists in Sacramento next week to switch back under their care and start preparing for radiation which should begin in the next 2 weeks or so. It feels amazing to think we've finally made it to this point. We've only discussed radiation very briefly because there was no point until we got through the bigger hurdles. Radiation will be taxing on his bone marrow and will slow down the recovery process, but it was all in the plans from the beginning. After radiation he will undergo an antibody therapy in San Francisco that will mean hospitalization for 5 days every month for 5 months. Then we anticipate his treatment road map to be complete. But it's one step at a time and we do detours.

We are getting the new routines of life in place. Signs on doors are up. Our hands are dry from frequent washing, I'm gaining confidence to cook without cross contaminating anything, and I've cleared plenty of space in my refrigerator from tossing everything that has been opened for a while. Being hyper conscious of germs makes me realize what a workout I must give my own immune system every day. Whew! Ryan and I have finally gotten some rest and back into normal sleeping habits. The Ambien label says it's non-habit forming, but each time we get back from the hospital, the first couple days are miserable. (Yes, we maintain our functioning capacity in the hospital with a little sleep help.)

The rest of the boys are enjoying a fun week in Utah with my parents since school is out all week (furloughs/ski week). It's been so helpful having them gone while we adjust and settle in. Now we wait and see what the weather brings the next few day to see if they'll make it home this weekend or next.

HE IS HOME!

2011-02-19T20:37:00.000-08:00

William arrived home Friday night!

We are exhausted, but sooooo happy to be home.

An enormous THANK YOU to the wonderful women who helped me clean and sanitize the house for William's arrival!

Change of Plans

2011-02-16T23:45:00.000-08:00

After meeting with several people yesterday to discuss various items related to discharge, it became plausible that William would be ready to come home by Saturday, not Tuesday. This morning, the doctor confirmed it. A bit incredulous that it was possible, I replied that I'd be more comfortable with the established plan of Tuesday. He gave me a puzzled, "Okay" and left. I panicked. What was I thinking? I calmed down, cleared my head, and rearrange plans to get home sooner to clean the house and keep us from spending any additional days in the hospital for no reason. Duh!!! Ryan will zip back down to San Francisco on Thursday to be present for last minute discharge instructions. I'll hurry home Thursday night to finalize the packing up of the 4 boys and start the cleaning. Discharge will be Saturday morning! My head is spinning with the fast forward pace of events!

On Friday, Wells, Nevada (huh, where?) will be the exchange point where Ryan's parents will hand off the 4 boys to my parents so the boys can spend "Presidents'/ski week" in Utah while Ryan, William, and I work out the kinks and settle into the new routines. Hopefully, a few sleep filled nights will also occur! Ryan and I have amazing families! Really amazing families.

Day 13: Engraftment

2011-02-15T00:09:00.000-08:00

Okay. Today is actually Day 15 (16 by the time many of you read this), but the first signs of engraftment showed up on Sunday, Day 13. We've just been too tired and busy to blog about it. With the help of GCSF (white blood cell boosting drug), his ANC has jumped up above 2000. He'll continue to get GCSF for a day or two and then he'll be on his own. His counts will drop, but we're hoping his body can keep his ANC>500 on its own.

What's engraftment?

It means the stem cells found their way back to the marrow space, attached themselves to the bone and replicated themselves enough to fill the space and then start to produce the daughter cells (white and red blood cells, platelets). Think of it like a factory (the bone marrow space). You have to spend time hiring employees (stem cells) to fill the factory. When you have enough employees you can start production on your product list (white and red blood cells, platelets). Over time, the employees become stronger and more efficient and can more easily negotiate production malfunctions (need for transfusions, infections).

Does this mean the transplant was a success?

Yes and no. This is great news that the stem cells are showing signs of production. However, the transplant won't be deemed successful for about a year or so. There are a lot of different cells involved (i.e. B and T cells) and these don't begin to recover for 3-6 months. Different cells fight off different things. Radiation treatment will also prevent some cells from recovering during that treatment period. William's immune system will be quite fragile for about a year and we will all live a life with varying precautions and restrictions during this time. Of course, these will ease up as time progresses.

When does he get to come home?

We are anticipating a Tuesday, the 22nd, discharge. It was to be Monday, but since it's a holiday.... (We have this thing with delayed discharges and/or delayed test results during Monday holidays!!!)
Coordination for home health to deliver medications and supplies and provide a nurse to do the I.V. pump orientation is a bit of a headache, but we're excited and beginning the countdown.
Let the serious house sanitizing process begin!

Checklist for Discharge

No pain meds---check. PCA (morphine button) removed today.
Zofran only administered as needed---check.
Other various medications discontinued---check.
ANC>500 for 3 consecutive days.
Eating and drinking. I.V. nutrition to be discontinued tomorrow and hopefully the appetite will return.

Thanks for all the letters, pictures, Valentines! He loves them and loves the daily mail delivery. We've taped all his cards on the window and it makes his room so cheery. I'll post a picture soon. Actually, I have several pictures to post if I can just get into a better routine of blogging before it's late and I'm exhausted.

Head Shots

2011-02-12T11:00:00.000-08:00

William has managed to keep the fevers at bay since the first one a few days ago. However, he teetered quite close to the official fever reading throughout last night. The mouth sores appear to be healing as he was able to drink a whole Capri Sun last night. The doctor described that as "impressive." Oh, it's the little things! His blood counts still haven't started their recovery, but the doctor is hopeful that his daily blood test will soon show some white blood cells since obviously something is helping the mouth sores to heal.

One thing that is becoming concerning is his fluid intake vs. output (aka how much he is peeing). He is receiving quite a bit of intravenous fluids, but for some reason his body is retaining much of the fluid. The concern, although not great at the moment, is his kidney function. Typically, a medication, Lasix, is administered to help flush the system, but it is particularly hard on the kidneys and since he has just one, they have tried to delay giving it, until today. He received albumin which helps the cells in his body absorb and fill with fluids. Next, he received Lasix. And hopefully that does the trick and lets the peeing begin. I never thought motherhood would consist of so much examining and analyzing of bodily fluids. Our nurse laughed when William came out of the bathroom announcing he needed Miralax. What 9 year old kid requests Miralax? Mine does. He also requests morphine instead of Tylenol for pain. Oh my.

Yesterday he woke up quite itchy all over his face. His pillow was covered in fine, short hairs. The hair loss is in full swing. Last night before his bath, he opted to have me shave everything else off since he was shedding like a cat. So once again, he is bald. It was much less traumatic this time around, thank goodness. Now he just complains about the patchy stubble when I stroke his head.

Before and After

Spiked!

2011-02-09T22:50:00.000-08:00

Good things often come to an end. The record setting ended with the spike of an early morning fever. For a healthy person it was low, 100.4 degrees F, but a fever nonetheless. A fever can be serious with no immune system; it means the body is trying to fight something. William has nothing with which to fight. Antibiotics were added to his weighty looking I.V. pole and blood was drawn for cultures. His oxygen saturation also went down and a tube blowing oxygen was added next to his pillow. The morphine granting button was increased again and he received his first platelet transfusion since transplant. Baldness is also in his near future with the first short, fine hairs showing up on his pillow. William is now in the comfortable category of "typical". Typical works for us.

The favorite gizmo is the suction stick. Think suction thing at the dentist only bigger. He's experimented all evening with the speed of varying fluids, i.e., spit vs. water vs. sodium bicarbonate, vs. mouthwash. Water is the fastest, but the mouthwash turns the collection canister blue! The nurse just asked that he not try red Gatorade. Agreed.

William's goal tonight is to keep the fevers at bay. My goal tonight is to sleep through all the beeping pumps.

One for the Record Books

2011-02-08T22:24:00.000-08:00

Today started pretty slowly and William slept until 12:30 or so. Turning into a teenager already. He awoke to find that the mouth sores are worsening and officially in full swing, but this is to be expected. William didn't eat anything at all today, and only drank what was required to get his pills down. Since he is on IV nutrition, and in so much pain when trying to swallow anything, there is no expectation (or need) for him to eat for now. He also got his morphine dose increased to try to keep him comfy and got a suction straw for his saliva to avoid the pain of swallowing that as well. Another new toy to go along with the magic morphine button.

On the bright side, it appears that William has set a record today - his Doctor told us that he has gone longer than any other UCSF neuroblastoma bone marrow transplant patient without spiking a fever. Today is 8 days post-transplant, and he has not had any fevers at all. Pretty remarkable since he has absolutely no immune system. Go William! Hopefully we'll be setting some other records for going home the soonest, but we won't get ahead of ourselves.

William also got a few presents today - his first blood transfusion of this hospital stay (since he has no bone marrow, he isn't producing any red blood cells), and a package from Grandma Bennion with some fun presents to open up every other day as an incentive to do some math worksheets. It's working so far - he did his worksheets today so he can open up the first suprise tomorrow. If anyone is wondering what they can send, William doesn't really need any toys or food, but loves to get letters (see post from last week for address). We have enjoyed some really fun cards and letters (thank you all) and William has put them up on his window. It is amazing how quickly the last 2 weeks has gone by. Hopefully in a week from now his white blood cell counts will start to rise as his new bone marrow starts doing it's job. Until then, we wait, suction, and press the button (the Wii buttons and the morphine button seem to have similar effects)...

I Wanna Happy Button

2011-02-07T22:45:00.000-08:00

Today I pulled out another toilet and dislodged a toy, again! It was ridiculously stuck, requiring a lot of yanking and pliers to get it loose. Seriously? I think I've lost count how many times I've done that in the past year or so, but I think 5 times sounds about right. And what is with my boys? At least this time was a little different. I topped it off by wrenching my back in the process when lifting the toilet from the tub back to the floor. I spent most of the afternoon flat on my back and even resorted to consuming my last muscle relaxer. I've been hoarding that pill for the past 2 years, waiting for a special occasion like today. Sad day.

But it was a happy day for William. The sores in his throat are worsening (how is that happy? read on...). After two unsuccessful doses of morphine this morning just to ease the pain enough to eat, he was granted a PCA, Patient Controlled Analgesia, a happy button. When he feels any pain, he pushes the button and gets a small dose of morphine. Obviously, there are parameters set on his pump so he doesn't overdose, but his pain is more effectively managed. Also, he will begin TPN and lipids tonight (I.V. nutrition). The doctor described him this morning as his most boring patient. That's what we like to hear! William is quite homesick, but he maintains his happy, pleasant nature that he's always had. I guess if you look at it in a warp sort of way, he lives a charmed life--a room with a view, multiple remotes in close proximity, nutrition pumped directly into the bloodstream, a button for instant pain relief, doting adults at his beck and call....

Plugging Along; Doing Well

2011-02-06T13:30:00.000-08:00

Two weeks ago when we sat down in our consent conference to sign all the paperwork and acknowledge we understood all risks involved with his transplant, the mood was somber, yet we remained hopeful and peaceful with the course of treatment we have followed. I must admit that I wanted to break down in tears a couple times, but held it together. The plan for each day was laid out. A schedule of when to anticipate the side effects was discussed and presented as fairly predictable and not particularly pleasant. Oh course, the ever-present caveat is always added, "But every child is different." William has some markers in his blood that put him at a higher risk for infection, but again, it's not a guarantee. All we can do is prepare the best we can and move forward. Then we wait and see how it all pans out.

So we wait. We wait for things to happen. We are at Day +6 and things are good. (14 days in the hospital so far). The mouth sores that should be starting to flare up haven't. He has some in his throat, but manages to eat a little each day without complaining and without morphine. The nurse is hoping the 7 popsicles consumed during the infusion of the Melfalan protected his mouth from the worst of the sores. The doctor is quite pleased with his progress and keeps pushing off the I.V. nutrition one more day. William is not eating much, but adequate to keep his weight from plummeting. The longer he can avoid the I.V. nutrition, the better his liver will be.

William has been paired up with a first year medical student, Josh, in the hospital's new Peds Star program. Josh stops by every other day or so and hangs out with William. He's great and brought movies, popcorn, chips, cookies, and soda last night and hung out for a few hours. William only managed to eat a little popcorn, but had a great time giggling at cartoons. I took the opportunity to leave for some fresh air and a shower.

Ryan and I are doing the tag team thing today. I am anxious to see the boys, sleep in my own bed for a few nights, and not eat out for every meal. Ryan has had a busy week at work and spent all day on Saturday painting William's bedroom. Hopefully things will continue at a mild pace with William so he can recharge a bit.

I feel like all I can do is just hash out a recap of the recent events with out any meaningful insights or poignant thoughts. I'm tired. I'm just staring out the window at the blue skies, blue water, and sunshine that my phone tells me is registering near 70 degrees today! I can't wait for the drive home with my windows rolled down and fresh air to breath.

BMT Room Tour

2011-02-03T22:45:00.000-08:00

The ante room. Looking at the door to the nurses station. This is where the parent eats. We unfold a small folding chair or just stand and watch the nurses out the window...0r they watch us.

The interior door to William's room. The window has the nifty louvers that are between the double paned glass.

Parent quarters. Is it crazy to reaffirm how much I love having a bed?

William's quarters.

Any guesses?

William's view from bed.

View if looking down. It's a cool rooftop. Too bad the mental health hospital patients are the only ones with access.

View looking left. The bay is in the background. It's the portion in between the two bridges. Bay bridge to the right, Golden Gate to the left.

Happy Birthday, Uncle Rich! Hope you had a great one today!

More Tidbits on Bone Marrow

2011-02-02T23:13:00.000-08:00

I'm tired. I haven't been sleeping well, but that's no surprise. We are still waiting for the yucky side effects of the chemo to show up, i.e, mouth sores, fevers, increased nausea and weight loss. From what the doctors and nurses tell us, it's not if, but when. And we're not quite to the anticipated "when". That should hit about Day +4 or 5 (Friday or Saturday).

The weather here was gorgeous: 60 degrees, breezy and sunny. It sounds like that's quite the contrast from the majority of the country right now. I took a needed fresh air break and took a walk at lunch time while William worked with the school teacher. The trees already have pink, fragrant blossoms. And it's the beginning of February! There is something calming and nostalgic in the sweet smell of spring blossoms. But I was lonely and I missed my children.

When I was talking to the doctor about William's blood counts and what was going on in his body right now, he explained that all his bone marrow was gone. If I was to look inside any of his bones, they would be empty. All the spongy, marrow substance is gone, dead. I find that fascinating. So now the transplanted stem cells are finding their way back to the marrow space to engraft into the bone and start reproducing themselves and eventually produce daughter cells (the white and red blood cells, platelets, etc.). Oh, and the stem cells are specifically bone marrow stem cells and they have receptors so when the blood passes through the bone marrow space, the specific stem cells know to attach to the bone while the rest of the blood cells and particles continue right on through. Isn't that amazing?

If I had my college Anatomy class to do over, I think I would find it much more fascinating and relevant today than I did way back then. I liked observing them, but had a hard time with the smell and touching them. Little did I know that motherhood would provide ample opportunity to deal with grosser, smellier things than a well-preserved body. Oh, how we change.

Book #7 Finished!

2011-02-01T12:06:00.001-08:00

William started reading Harry Potter last year and was whipping through them until his cancer diagnosis. He was almost done with #6 at the time. When chemo started he never felt like reading anymore. I hear this is a common side effect with chemo. In December, after his 8th round of chemo had started to wear off and with no new cycle to begin, he started enjoying reading again. He started # 6 again from the beginning and moved right on to #7. We have a deal that he can't see the movie until he's finished the book. As transplant approached and we were faced with the reality that he won't be able to go to a movie theater for 6 months, we modified the rule and told him he could see the 7th movie since it only covers the first half of the book if he was more than half way done. On Saturday night before transplant, he and Ryan sneaked out of the house for a 9:50pm showing of the movie. It was amazing we even found it still in the theaters around us. He had about 100 pages left and he finished today! We did a little dance! And Aunt Angela found this cool website! I always love it when he laughs---especially in the hospital!

Day 0: Stem Cell Transplant

2011-01-31T23:32:00.000-08:00

Getting prepped for transplant. Quite the I.V. pole, eh?

Stem cells. Now you know.

Today is Day 0. We were admitted on Day -7 (read day minus 7). Tomorrow will be Day +1 (day plus 1). I know, rocket science! Everything counts up to or away from the transplant. I get the feeling that his life will be measured in countless ways from this day forward always referring to each day/month/year as post transplant. I tried to joke with William about this being a new birthday for him and another reason to celebrate, but he was more concerned that my head was blocking Tom & Jerry on the TV. That's good.

Upon entering William's room, wafts of peppermint would suggest we were conducting an aromatherapy session. Small plastic medicine cups with cotton balls and peppermint oil have been strategically placed around the room. It smells lovely, sort of. The substance, DMSO (DiMethylSulfOxide), used in the cryopreservation of the stem cells, is some potent smelling stuff. It has a pungent, slightly bitter, vegetable smell---a little like creamed corn and V8 juice. Try to imagine that odor. It's not offensive, just unpleasant. Anyway, he excretes the smell through his breath, skin, fluids. Hopefully the smell will subside by tomorrow.

The transplant was uneventful and observed by the attending doctor, the fellow, and the resident. The nurse performed it. How backwards is that? It all went smoothly with no immediate allergic reactions. The doctor said if we were to look inside all his bones right now, it would be hollow with no existing bone marrow. Crazy! So now it's a waiting game for mouth sores, fevers, transfusions, and hair loss. What fun! What fun!

Here's a brief video of the transplant process. I unfortunately missed a shot of the 3 doctors just standing at the foot of his bed watching the whole thing take place. The smell was pretty immediate and he plugged his nose and watched cartoons through the whole thing.

He's been in reasonably good spirits today, but his appetite is waning. He didn't eat anything until 7pm. He managed a small bowl of Cheerios, a few bites of fruit, and a bag of movie theater buttered popcorn. Only a mom would keep track of such things, right? His other mood booster was finally getting the video chatting up and running. He and James (best friend) talked for an hour. I guess I should clarify that they weren't chatting the whole time. There was plenty of silence too, but they're not old enough for awkward pauses. They were texting each other! How cool is it to be texting each other while watching each other do it on a computer screen? Oh my. (deep pathetic sigh). So Lisa (his mom) and I called each other on our phones, waved over Skype and contemplated emailing and texting just to one up the boys. We didn't. But it was discussed.

No More Chemo

2011-01-30T17:32:00.000-08:00

At 9 AM this morning, William received his final dose of chemo as part of his 9th round. Hooray!!! Tuesday through Saturday he received Busulfan and today he received Melphalan. Today's infusion lasted 1 hour. One of the uncomfortable side effects associated with this drug is the dreaded and very unpleasant mouth sores. In an effort to keep the blood vessels in his mouth constricted during the infusion, thus lessening the ability of the chemo to penetrate the soft tissue of the mouth, and reduce the severity of the mouth sores, he was on a strict diet of cold things before, during, and after the chemo. Popsicles, popsicles, popsicles!!! He ate seven back to back. Oh, and have I mentioned that we've been encouraging 1-2 (or more) full size Snickers a day to help boost his weight? Quite the dieting going on here. Thank you, Costco.

He's been doing quite well this week, but the chemo is catching up with him. His appetite is decreasing and so is his weight. He's lost 2-3 lbs. already. Ryan and I keep reminding ourselves that we knew this was part of the process. The doctors told us he would be on I.V. nutrition for a period of time---not maybe, but definitely. So we'll keep ordering food and offering encouragement.

Ryan replaced me at the hospital on Friday to provide some fresh entertainment over the weekend. The boys were happy so see me, but perhaps more disappointed to see cousin Eliza go home. It's amazing how the novelty of a little girl in our house keeps those boys entertained. I'm bracing for those teenage years! Thanks, Mary, for holding down the fort and thanks, Erik, for letting your wife and daughter place house at our house! It's really good to be with the boys and hide from the world in the security and freedom of our home. We've eaten a lot of popcorn and enjoyed being together.

I'll likely head back to San Francisco late tonight so Ryan and I can be together with William during the transplant. Transplant is Monday at 11AM. As I understand it, it's quite underwhelming. It's an infusion. No alarms, no firecrackers, no anxious gasps for breath. A small bag of pinkish fluid simply passes through a tube into his chest over about 30 minutes. It occurs in his room and we will be with him, but a nurse will be stationed at his bedside for a period of time closely monitoring things. More on that tomorrow. (You know, after I'm an expert!)

We continue to take one day at a time and want to express enormous buckets of gratitude to all of you that continue to support us in so many ways. We feel your prayers. We physically feel your prayers.

Please Mr. Postman, Look and See

2011-01-28T11:28:00.000-08:00

William's hospital address:

UCSF Children's Hospital
William Murdock, 7Long BMT Unit
c/o Patient Mail
San Francisco, CA 94143

Holding Pattern

2011-01-27T22:14:00.000-08:00

Look at the hair, eyebrows, and eyelashes---I love it! And it is soooo soft. And surprisingly, a little darker. But, he'll loose it all next week. I wonder how it will grow back in a few months?

Physically, William is doing great. He continues to eat and get up and move around the room. Emotionally, it's been a tough day. He's been quite homesick. He sobs about wanting to go home, getting out of the room, hating hospitials, etc. Part of the meltdowns and mood swings appear to be tied to one of his medications; he gets hyper and silly and then 2 or three hours later, he starts crying. It's no fun because I don't have much to say to make it better. "I know, but you have 4 days down and only about 25 days to go." I wait for him to finish venting and in the end, through his sobs, he asks me me to just hold him. I do. And I stroke his soft head with my cheek.

He loved video chatting with his East Coast cousins today. The whole EST vs. PST is usually tricky in finding mutually convenient times to chat, but today it was perfect. His meltdown coincided with east coast bedtime. Thanks, Sam, Lauren, and John for cheering up William. (Thanks, Danny and Sarah too, for prolonging your bedtime rituals! I know that can be a sacrifice.)

Ryan is arriving tomorrow to take his weekend shift. Yay! He'll come bearing chocolate. Oh, how did I forget that one?

How to Live When Your Child Gets a BMT

2011-01-26T12:00:00.000-08:00

Wash, Wash, Wash.

Preparing to come to the hospital:

wash all clothes
seal all items in plastic bags (Ziploc), i.e. clothes, pillows, stuffed animals in
no toothbrush or opened toiletries

The inside of his suitcase looked so neat and tidy, but looked like it was packed by someone with serious OCD.

Upon arrival:

scrub for 2 minutes up to our elbows in the ante room (enclosed entryway with a sink and storage cupboards)
William given a sterile bath. Think sponge bath, but with heated, sterilized, bottled water and special antiseptic soap.
Put on clean, sanitized clothing from home.
Everything we brought had to be wiped down with sanitizing wipes before entering the room. The wipes are so powerful that rubber gloves must be donned.

Daily maintenance:

William may not leave the room.
Hands must be washed every time upon entering the room.
2 minute scrub to elbows only if you go outside the hospital.
Only William can eat and drink in the room. I have to stand in the ante room to eat or drink. This puts a cramp in any snacking urges. And the outside door is a glass door that looks right at the nurses station.
No outside food permitted in the room, i.e. restaurant, homemade.
Any food not prepared in the hospital must be individually wrapped and sealed.
Once the seal is broken, it must be consumed in 2 hours or thrown away.
William's food is prepared in a special neutropenic kitchen.
William is given a sterile bath each day.
He he must swish three times back to back, 4 times a day with a special solution to clean his mouth.
Brush his teeth daily with the disposable sponge on a stick toothbrushes.
Bed linens are changed daily. The linens for the BMT kids are washed and stored differently to make sure they are very, very clean.
No toilet paper is used. Sterile gauze pads may be dipped in sterile water and/or sterile soap solution if needed.
Only William may use his bathroom.
The shower may not be turned on since the pipes in the hospital are old.
Only bottled water is consumed.

I'm sure I've forgotten some things. It's serious mental exercise just adjusting to how to live in this environment with all of the necessary precautions and restrictions. But it's all worth it.

William is on day 2 of chemo. He is receiving Busulfan for 5 days and then Melphalan for 1 day. Then 24 hours after that . . . Transplant (Monday). So far he is tolerating it quite well and continues to eat. The doctors told me this morning that side effects can be slightly delayed, but it's a good sign he's still eating. We are told the Melphalan won't be so pleasant. William is pre-medicated before the Busulfan with Ativan for nausea and possible seizures. It makes him a bit loopy and dizzy, but in an entertaining way. Yesterday he asked why I had two heads. He laughed. That's good.

Soon to come: pictures and perhaps a video tour.

BMT Admission

2011-01-24T23:21:00.000-08:00

William was admitted at UCSF today to begin the Bone Marrow Transplant (BMT) process. We are beginning a whole new lifestyle for the next month and in many ways, for the next six months.

I'll start with the best news of the day.

MIBG SCAN results: clear! No uptake in the liver, pelvic bone, or resection site (tumor site). This means there are no active neuroblastoma cells in his body other than the small amount of stubborn cells in his left leg.

We are thrilled with this news as it means the MIGB therapy, the lead-lined room, isolation, and temporary cramped lifestyle were all worth it. He is one of the 1/3 that benefit from that treatment! Finally, one of the odds that went in our favor! (Deep sigh of relief)

Today was filled with instructions on how to sterilize and sanitize everything that comes into the room and how we live our lives in an environment like this. It's a mental overload right now because today has been full of bundles of new information. But it's all good and we're already settling into a routine.

William is in good spirits and describes today as "Easy. I just stood there and got bathed and then just played my DS while people did stuff." Okay. Tomorrow may be a different story when chemo starts and he may not be feeling too good. We'll see.

I'm off to bed because I'm tired and because I actually have a real bed with a mattress and it doesn't fold up or out. Ahhhhhh. The simple pleasures. More tomorrow on our lifestyle. I promise.

Pre-Transplant Test Results

2011-01-22T15:00:00.000-08:00

The following are the numerous test results that filtered in this week:

Bone Marrow Biopsy and Aspirate

Right leg continues to be clear of any disease.
Left leg still has measurable disease at <3%. This is an improvement from the <5% before the MIBG therapy in December. Of course, we are saddened by this result as we had hoped for remission before proceeding to transplant. This result means there is a slightly higher chance his cancer could return or not be cured at all. But looking at the bigger picture, his bone marrow was 95% infected at diagnosis. He's made lots of progress! William has undergone the most aggressive forms of treatment available for neuroblastoma. We have no regrets as to the course of his treatment. This is just the way his body and the cancer have responded.

Audiogram

Continues to have increased mild hearing loss in the high pitch range.
He is still within the range of normal speech development. Thankfully, the new chemo regimen he will undergo before transplant does not have the toxicity to hearing that the former regimen has.
This will keep him out of military service!

Pulmonary Function Test

Some parts were normal. Others were not.
Some of his flows were measured at 50%. This is not too concerning given his age, what chemo he has tolerated, how he may have felt that day, inexperience with the test, but it is acceptable to proceed with transplant and will be monitored long term.

EKG and ECHO

good

CT scan

Decreased number and size of the previously noted lesions in the liver.
The largest has decreased in size from 1.4 cm to 1 cm.

MIGB

results still pending.

Ryan and I met with one of the transplant doctors to discuss at length the transplant process and the risks involved. It went well and we feel at peace, but it's very sobering when you must participate in a discussion about the realities of your child's health. There are risks and although many things are rare, they still happen at frequencies we wish didn't exist.

We've got a busy weekend getting everything prepared and spending some quality time with the boys. I'll post more details later of all the precautions and restrictions that go along with t he transplant.

Nuclear Meltdown

2011-01-18T22:10:00.000-08:00

Some days make me crazy. Today made me crazy. I really do pride myself in remaining fairly calm, more or less, (Ryan is rolling his eyes at that one) but even William could tell something was not right today and started to cry, saying, "I'm getting scared" because he knew my stress had something to do with him. I felt so bad and quickly assured him that he would be okay, but I was just frustrated with doctors that were messing up my not-so-neat, but meticulously scheduled week.

As I mentioned in a previous post, this week is full of tests and scans. Monday afternoon, we got a call from a nuclear medicine tech telling us they could not inject William with the MIBG on Tuesday (today) for his scheduled scan on Wednesday (tomorrow) because he had been injected with such a high dose in December. They wanted to do a background scan to assess his radiation levels before injection. Fine. I can live with that, but after the scan he can receive the injection, right? No. After the preliminary scan, the nuclear medicine doctor decided she didn't want to do the scan and wanted to wait a week. Panic hit as I tried to explain that we didn't have a week because he is scheduled for hospital admittance to begin the transplant process on Monday! This Monday! After some frustration, (I'm obviously leaving out some of the details that don't matter now), and several phone calls, S.F. got us into their schedule and will do the injection and scan, but it means I have to drive William to S.F. on Thursday for an injection (we're talking minutes to inject) and then return home and then back again the next day, (Friday) for our consent conference and his MIBG scan. But of course his scan is scheduled during our conference. Thankfully, my amazing family will come to the rescue and my brother, who works in S.F., will take off work to take William to his scan and be with him while we are in our meeting.

So now I'm in the process of reassessing the babysitting needs and double checking it all. I owe enormous Thank Yous to fabulous and supportive family and friends for so often being willing to care for my other children at usually very short notice. Thank you! Thank you! Thank you!

At this point, it appears his transplant will not be delayed, but it really took villages today to help me keep some semblance of sanity and iron out the wrinkles.

Oh, and did I mention I got a parking ticket too because in my stress I hung my recently expired handicap placard instead of my valid renewed one? Well, I did.

Two Hospitals in One Day

2011-01-14T18:27:00.000-08:00

Two appointments (sort of), two different hospitals, all today, and not exactly planned that way, of course! The whirlwind of tests and scans to prepare for transplant has begun.

This morning we left the house quite early to head to San Francisco for a blood draw for labs that are needed in preparation for transplant. It was a long drive for such a quick thing, but it had to be done in the SF lab. Luckily, I was able to talk with one of the transplant doctors for a while to answer more questions. The doctor examined William and noticed his heart beating a little fast and that he looked a bit pale (I think William is always a bit pale), so our plans changed a bit. We were planning on a Tuesday blood transfusion, but since the weekend was long, his blood levels were already borderline, and he had a lot of blood drawn today for labs, the doctor wanted a transfusion today. So I called our hospital in Sacramento and arranged to come in straight from San Francisco for blood. Oh, the life. But at least on Tuesday we will have one less thing to do at the hospital. And hopefully we can make it home within 13 hours from when we left home this morning.

Yesterday was the kickoff to our week or so of transplant prep actvities. For starters, William had another bone marrow biopsy and aspirate to test for any remaining cancer cells in the bone marrow. We anxiously await the results on Tuesday. (Darn 3 day weekend). It went smoothly and William was thrilled with Child Life's new acquisition: an Ipad! And they even loaded Angry Birds in HD just for him! We make each biopsy "fun" by video taping how long it takes the Propofol to kick in. William plays Angry Birds and tries to see how many birds can be launched from the time the injection begins until he's out. It's usually 1-2 birds.

Here's the rundown of the remaining fun activities: PFT (pulmonary function test), MIGB injection, audiogram, EKG, ECHO, MIBG scan, CT scan, 2 clinic visits, and as afternoon trip to SF for me and Ryan for the consent conference where we hear all the risks in detail and sign all the papers for transplant. Then we have the weekend at home, (exhale), before heading back to SF on Monday the 24th to begin our month long (hopefully not longer) hospital party, (inhale and hold it).

Happy Birthday, Cameron and Nathan!

2011-01-12T23:06:00.000-08:00

Our twins are 6!

We love you both like crazy. We love the laughter, silliness, tenderness, and energy you bring to our family. We can't imagine life without the two of you! Happy Birthday!

Spending T-I-M-E

2011-01-10T23:46:00.000-08:00

In a recent lesson at church, the topic was Elder Uchtdorf's October General Conference address, "Of Things That Matter Most." Ryan and I frequently pondered this statement, particularly in the past several months, as we face adversity and contemplate the purpose of life and how we're doing in it.

President Uchtdorf states, “If life and its rushed pace and many stresses have made it difficult for you to feel like rejoicing, then perhaps now is a good time to refocus on what matters most.” He continues by outlining the importance of improving four key relationships.

1) Our relationship with our Heavenly Father. “As we seek Him, as we learn of His Son, Jesus Christ, as we open our hearts to the influence of the Holy Spirit, our lives become more stable and secure."

2) Our relationship with our families. “In family relationships love is really spelled t-i-m-e, time. Taking time for each other is the key for harmony at home."

3) Our relationship with our fellowman. “We build this relationship one person at a time—by being sensitive to the needs of others, serving them, and giving of our time and talents.”

4) Our relationship with ourselves. He suggests we "… reduce the rush and take a little extra time to get to know [ourselves] better. Walk in nature, watch a sunrise, enjoy God’s creations, ponder the truths of the restored gospel, and find out what they mean for [us] personally. Learn to see [ourselves] as Heavenly Father sees [us]—as His precious daughter or son with divine potential.”

With the extra time (out of the hospital) we've had lately, we have really tried hard to spend quality time with one another. We've also tried to make much of the time one-on-one with each of the boys whenever possible (not an easy task, but doable with a little effort).

William will be admitted to UCSF on Monday, January 24th, to begin the stem cell transplant process. Details on the process to come later. After the transplant, he will not be allowed in public places for 3-6 months. Therefore, we are trying to enjoy things with William that may be off the table for a while in the near future, like eating inside In-'N-Out (he's finishing a whole Double Double these days), having playdates, going to the movie theater, riding bikes, and Kings games.

For those that don't follow the NBA (I don't), the Sacramento Kings are the worst team in the league this year. Ryan was offered 4 free tickets from a coworker to attend a game that evening. (Thanks, Neil--you made 2 boys really, really, happy! Okay, two moms too!) Ryan perfected his babysitting skills while Lisa, James, William, and I headed off to the game with low expectations for the game, but high expectations for some good 'ole fun. It was fantastic! William ate a Jumbo "King Dog" and "King" rootbeer, and half a Jumbo popcorn. Can you tell what I focused on during the game? The caloric intake was worth every penny I shelled out! He and James danced, cheered, and tried unsuccessfully to get on T.V. William managed to work his bald head by dancing in the aisle during a commercial break until one of the dancers ran up the stairs and personally handed him a King's t-shirt. That made up for not getting on T.V. Oh, and the Kings had their best game of the season, winning and scoring a record high in points for the season.

"Best game EVER!"

I hope he doesn't burn too many calories. Check out the face!

So here's to finding moments to rejoice in, like just being with good friends in public places.

The Vacation is Over

2011-01-03T22:40:00.000-08:00

As many good things must come to an end, so does our life away from the hospital. At today's clinic visit, as expected, William needed a platelet transfusion. However, what I didn't expect was a need for a blood transfusion as well. Why do I still try to anticipate things when I always get it wrong? I guess that's Mothering 101. Platelets take an hour to infuse and blood takes 3 hours and they can't be infused together. In true hospital luck, we waited for 4 hours to get the platelets started and almost another hour after that finished to get the blood started. So, what I hoped would be a 4 hour trip to the clinic/hospital was a 12 hour trip. Thanks to two great girls who played tag team babysitting to cover our always unpredictable schedule!

But on the bright side, we got to visit with our two good buddies, Spencer and William (both were just in for regular check-ups and not admits-yay!); we got to see some of our favorite nurses; we got to spend some time in the playroom; and we remembered why we loved our break from the hospital so much! We missed the friends, but not the lifestyle!

Recharging

2010-12-30T23:11:00.000-08:00

Recharging and it's all good:

The moratorium on close contact with William is over.
His blood counts continue to be high enough to allow him some freedom to be a boy!
Spent 1 day in S.F. for a stem cell rescue (a simple transfusion) of one of the three batches of his own stem cells that were harvested back in August for his upcoming transplant. The purpose was to give him a simple boost before transplant since the MIBG radiation therapy can be quite taxing on his stem cells and their ability to produce the needed blood products to keep him healthy.
Enjoying every minute of not being in the hospital or living under the threat of admittance for a while.
Scheduled to be admitted at UCSF for stem cell transplant on January 24th.

We are filled with deep gratitude for how blessed we are. We are so grateful William is doing so well right now and how well he has tolerated so many hard things. He still has a long road of treatment ahead of him, but we are thankful for today. We are immensely thankful for an incredible support unit. I don't know where we would be without our family support. Our parents and siblings have swooped in to lighten our burdens on so many occasions and often at very short notice. Our love for our families has always been great, but it has truly intensified as we have seen and felt their love. We have been nurtured and strengthened in many instances when we could not do so for ourselves. We also have amazing friends and neighbors and live in a community that has shown us many thoughtful and often secret acts of kindness that can only be paid forward by serving others in similar ways. Thank you. Thank you.

The past 7 months have been intense and very exhausting. We still have at least another 7 ahead of us with treatments that will included many scheduled hospital stays and countless tests, etc. I can't help but feel that the Lord knows our capacities and knew we needed this small period of time to breathe, regroup as a family, and recharge for the battery draining that will soon recommence.

Thank you Santa

2010-12-25T20:21:00.000-08:00

Dear Santa,
Thank you for making my lunch with my friend happen. I had a wonderful time. I don't think we ever mentioned our children- how is that possible? We finished our lunches without being interrupted. It was a first. A first of many- yes?
Still believing,
Lisa

And a note to the curious, caring, and faithful readers- the season is the reason for no blog posts. Julie has been busy visiting her wonderful family in the Bay Area (with a little trip to UCSF for a booster shot of sorts) and playing at the snow with her children, and being a mom at Christmas time. The whole family + Uncle Matt stopped by our house yesterday and everyone looked great. And Will talked our ear off.

Home. Sweet, Loud, Chaotic, Home!

2010-12-16T21:43:00.000-08:00

Late Tuesday night, we pulled into our driveway and sighed deeply. I love home. I love ceilings that don't have creaky pipes, beds that are soft with high thread count sheets, walls and doors that provide privacy, and bathrooms and showers that are NOT communal. Oh, how good it felt to shower in our own shower!

We are exhausted and we feel like we're back in the infant stage. William needs potassium iodide every 4 hours to protect his thyroid from the radiation. This will continue for the next month. We set our alarms and sleep lightly. I wake frequently wondering if I've missed the alarm or if it's time for the next dose. But it's all worth it. Right?

William had an MIBG scan on Tuesday afternoon before we headed home. The purpose was to see the uptake of the MIBG in the neuroblastoma cells. There was the possibility that new locations of cancer cells could be evident since a much higher dose of MIBG was administered. We waited anxiously on Wednesday for the results. We are pleased to announce that no new sites were found and the spot on his pelvis appears to be gone. However, there are still active cells in his liver and a small amount near the resection site along his spine with the continued likelihood of an involved lymph node. Our realistic hope is that the MIBG will destroy all cells, revealing no evidence of disease (a good remission) in his future scans scheduled in January, just before his stem cell transplant.

Otherwise, William is feeling good and trying to remember to sit away from his brothers for another week. It is hard to remember sometimes that he needs to stay away because he feels reasonably well. Please don't get nervous being around him; the precautions are only in place for extended exposure to him. You could hang out next to him for 8 hours and get less radiation from him than you would on an airplane from the atmosphere. It's all a little crazy and my head still spins a bit from the crash course on radiation. Talk to Ryan if you want a more scientific, detailed explanation.

Did I mention how good it feels to be home?

Trying to Get Home

2010-12-13T23:30:00.000-08:00

Here's our Family House room. It just a room, no bathroom, sink, TV, but it's clean and place to crash and briefly escape from the confines of the hospital.

Sunday night when I returned to the Family House to sleep, this was posted on a guest door down the hall from us: (click on photo to read more clearly)

This morning I frantically began packing up and cleaning our room and washing our bedding and towels. But it wasn't due to the illegal drug activity. Oh my! This morning's radiation reading from the safety team was 2.8: good enough to be told we could go home after an official reading from the Radiation Safety Team later in the afternoon, the arm banding, and the MIBG scan. William has to wear a special bracelet for a month to notify any hospital in the event of an emergency that he has received this treatment since most healthcare facilities have never heard of it. The scan will reveal all the places the MIBG was taken up by the neuroblastoma cells. He'll have a follow up scan in 5 weeks, just before transplant, to see how effective the treatment was.

We rarely get too optimistic when things seem to go unexpectedly in our favor, but we never stop hoping for the best. Does that say anything about our exhausting journey? The nurse assured us we would be discharged, the final say from radiation safety was a YES, and the Nuclear Med Dept. rained on our parade out the door. They were backed up and wouldn't fit us in today. They can't schedule the scan until tomorrow (Tuesday) at 4 PM. I guess that's a price we pay for staying at a large hospital facility: they keep busy. However, we did take our discharge papers and ran for the . . . family house. (No funny pot smell today. Just a strong smell of cleaners and disinfectants.)

Pot or no pot, we weren't staying put after 6 cooped up days. We dropped our bags and headed out to find non-hospital food and fresh air. We walked around Giradelli Square and sipped hot chocolate; meandered through Fisherman's Wharf, buying and eating a fresh, whole cracked crab, (stopping at McDonald's for William); and roamed Union Square by foot, gazing at the beautiful Christmas lights.

Tomorrow we hope to continue the touristy thing in the morning before we have to report back to the hospital. William deserves a fun day before the world of doctors and hospitals swallow him up again.

Once we get home, William will need to remain at least a meter away from anyone for extended periods of time for 10 more days. He'll have several trips to the clinic to monitor blood counts and then we're back here next Friday for a stem cell infusion to boost his bone marrow in preparation for transplant on January 24th.

But for now, we'll just focus on getting home.

Dear Santa,

2010-12-13T15:31:00.000-08:00

For Christmas this year. could I please have two hours to take my dear friends to lunch? If you could arrange for a wonderful uncle to arrive and wrangle five boys and allow us that time together, it would make this holiday very special. It may seem like two hours is a long time for lunch, but my friend Julie and I can't hardly finish one story together in an hour each day. We talk often, but I miss seeing her smiling face. I miss seeing her sad, silly, and especially frustrated faces too. We do enjoy one another's struggles together. I can't wait for her to get back home.

I haven't been more naughty than usual this year so I am really hoping I am still on your list. And my friend has been as wonderful and nice as usual and she should enjoy a wonderful lunch at my favorite place.

Please give my best to to Mrs. Claus and the elves and reindeer. I know it is a busy time of year for you all, I appreciate you taking the time to read my letter.

Still believing,
Lisa

Welcome Back William

2010-12-12T22:59:00.000-08:00

Today was a good turning point for William. His radiation reading late this morning was 6 (units are in millirems per hr for all you engineers out there), which was low enough for his catheter to come out (he was at 55 mR/hr on Wed, and needs to be at 2 before going home). William was not as thrilled with the prospect of catheter removal as Mom and Dad were. Will has been a huge trooper for the last 6 months in countless ways, but he draws the line at anything having to do with inserting or removing tubes. I can't blame him. We tried to talk him through it, but in the end the brute force method of holding him down was employed, he screamed (more because of being held down against his will than from any pain), and the nurse and I were swiftly asked to leave the room and leave him alone.

But within an hour he was back to his chatty self that had been missing in action for several days since the infusion, and he was talking our ears off and mentioned to the nurse that he had been grumpy earlier, but felt much better. It is wonderful to have our good-old William back. He's gotten out of bed a few times (he's not allowed to go farther than the bathroom) and he has been doing more activities and eating a bit more. Hopefully he'll also be able to catch up on a few texts (I think Julie mentioned earlier that he has a cell phone while here in the hospital) that he hasn't felt up to responding to in the past few days.

Julie and I actually even got a quick walk in this evening - much needed, even though it was just between a distant parking spot and the Family House where Julie is staying tonight. We hope that William's radiation levels continue to drop and we can spend much more time outside of our hospital hallway home in the coming week. Things are going well and we're grateful to be here and have William's energy back up a bit to keep us entertained.

Grandma and Grandpa Murdock continue to keep the home fires burning at an impressive pace and I think the boys are having so much fun they may not want me and Julie back. We love and miss you boys (and all the rest of you too). Goodnight from your radioactive friends.

We Were Warned...

2010-12-11T17:00:00.000-08:00

...the biggest side effect is extreme boredom.

Ryan and I continue to reside at the end of a hallway behind double glass doors. We are in a fish bowl. The total space is approximately 8 tiles x 10 tiles (ceiling or floor depending on which one you feel like counting). Yes, I've counted. The old pipes in the ceiling creak constantly and make quite a racket at night. We have earplugs for that. We hear the ambulance sirens through the Emergency Exit door that our sleep chair actually overlaps and we have to move out of the way for other patients/parents to access the shower. We try to keep the perspective that this is all temporary.

The door on the right is another patient room and the door next to Ryan is the shower and the door on the left is William's.

William is passing his days watching cartoons and The History Channel. His energy and appetite have decreased which are normal side effects of this therapy. But darn it, we're still trying to pack on the pounds. Although he has told us on several occasions he doesn't want to talk (his tell-tale sign he's not feeling good), he remains quite pleasant. It constantly amazes us how patient and accepting he is of all he's gone through. He even confided in Aunt Paige that going through all this was almost worth it to get his own room! Really? A little more begging may have worked over getting cancer.

Visits from Uncle Rich and Aunt Paige, Grandma and Grandpa Murdock, and all his brothers have brought a welcome change of pace to the days. Although I must admit that I am a little jealous of the prolonged visits they had with William in his room. Unlike me and Ryan, they don't have to pace their daily allotment of exposure to him.

The boys were a little bummed they couldn't go into the room, but if you look closely in the photo, you can see William in the reflection in the mirror. They quickly got over their disappointment by raiding our snack bag of sour candies and goldfish crackers. At the moment, Ryan and his parents have left the hospital and are enjoying the afternoon at the California Academy of Sciences which boasts an aquarium, planetarium, rainforest, natural history museum, and more. Hopefully tonight we'll all sneak out to dinner together if William is okay being left alone for a bit. (He may not even notice while in a TV coma!)

So although the days may be long, the accommodations tight, and the boredom hard to fight, this too shall pass.

Hot Stuff

2010-12-09T22:50:00.000-08:00

It is done. He has received his I-131-MIBG treatment and now we wait for the radiation to wear off.

It's been a day of brain overload trying to assimilate a crash course in nuclear medicine and radiation safety. So enjoy the slide show because I'm too tired to come up with any additional commentary. However, I must add, for pure recollection purposes, the Bingo game.

The pediatric patients get to play Bingo every Thursday afternoon. Some group or person from the community hosts it each week. This week was the San Francisco Fire Dept. It is broadcast over closed circuit television so all the kids that can't make it to the playroom can participate. Everyone gets a prize and the prizes are fantastic. The playroom looks like a toy store. William was so excited. However, the game started at about the same time his infusion was starting. William's room was buzzing with activity. William can tune out anything and was completely focused on the Bingo game. The nurse was monitoring his vitals closely and all of the sudden his heart rate jumped from 113 to 138 and William shouted, "Bingo! Bingo! Bingo!" And fumbled for the telephone receiver to call in his Bingo. It was hilarious and gave us all a good laugh.

Back to the slide show:

Practice Run and a Video Tour

2010-12-08T23:59:00.000-08:00

Today was filled with trying to cram in whatever we could before life becomes incredibly restrictive for the next week. The rainy San Francisco morning was spent touring the city by car. We traveled down Lombard Street, drove through Golden Gate Park, went past the Painted Ladies and Alamo Square, surveyed City Hall, and ascended and descended some incredibly steep streets. I'd like to insert that I have a recurring nightmare since adolescence about driving really steep streets and whether going up or down, the car starts to tumble end over end. I was the driver today. Oh fun! Let's just say that the knots in my neck from a crummy hotel bed and steep street tension are wishing I'd packed the last muscle relaxer pill I've been hoarding for a couple years for a special occasion like this!

We also toured the Family House where Ryan and I will be trading off sleeping at nights. Unfortunately we are stuck at the one about 10 blocks from the hospital instead of the one across the street, but we'll take it over staying in our poor choice of a hotel. Then it was finally time to head to the hospital.

We got checked in and started settling into our lead-lined life. William had a Foley placed (catheter for urination). Oh, that was a lovely time. William handles everything like a champ. He is truly a trooper. But when it comes to line placements or removals...bring on the heavy sedation! Child Life brought in an ipad to borrow as a distraction during the procedure. He lit up at the sight of Angry Birds in HD on a big screen. It was hilarious and we almost thought we'd hardly need meds to get through the catheterization. Nope. The doctor planned on 3 mg of Versed and when all was said and done, William was the prize recipient of 5 mg Versed and 65 mcg of Fentanyl. 2 mg of Versed is usually enough for an adult to agree to anything. He was loopy and I'll spare William the public embarrassment of some of the comments he made, but oh, how I wish I had them on tape!

So today was a practice run of how everything will work once radioactivity is a reality. It's all in an effort to eliminate surprises and the need for prolonged entry into the room once William becomes radioactive. The radiation safety gurus will lay down the law tomorrow morning and I'll have some more crazy photos and processes to describe tomorrow. So sit back and enjoy a brief video tour of our world for the next 7 days!