Thursday, December 30, 2010


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.

Saturday, December 25, 2010

Thank you Santa

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,

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.

Thursday, December 16, 2010

Home. Sweet, Loud, Chaotic, Home!

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?

Monday, December 13, 2010

Trying to Get Home

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,

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,

Sunday, December 12, 2010

Welcome Back William

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.

Saturday, December 11, 2010

We Were Warned...

...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.

Thursday, December 9, 2010

Hot Stuff

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:

Wednesday, December 8, 2010

Practice Run and a Video Tour

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!

Tuesday, December 7, 2010

Down By The Bay

We made it to San Francisco. It's been a busy day and full of fun memories. We're exhausted and have a long day ahead so here's a quick recap.
  • Ran into our friend Will H. who is 18 and has lymphoma. He is from Folsom too, but gets all his treatments here in San Francisco. It was so great to finally meet his mother as we've only talked on the phone and emailed. I love how small the world feels sometimes. Will finished his last round of chemo today! Hang in there, Will! You've come a long way!
  • Met with the doctors and gave our final consent for treatment.
  • Toured the lead-lined room. Can't wait to get pictures and possibly video of this one. They've lined the room with plastic for protection, i.e. floors, food tray, mattress, toilet seat. But it is a room with view: Golden Gate Park and the ocean in the distance.
  • Checked into a hotel for tonight. The reservation was made during a stressful moment, while running late to leave the house, and as a recommendation from the social worker. She said it was the closest to the hospital with a hospital discount since the Family House was full and was adequate depending on your comfort level. That should have been a red flag, but we made our own hasty choice and now we're sleeping in it (but only for 1 night)! To my siblings: this is a close second to the hotel in Lake Como, Italy when we tried to be cheap and wished we hadn't.
  • Headed to the Golden Gate Bridge for sunset.
  • Went to dinner with my brother, Rich, who works in the city. We went to a fantastic Italian restaurant! You've got to love a place where the waiter tells you his mother makes the lasagna and he recommends anything on the menu with meatballs!
  • Took a long walk around the financial district and down to the waterfront.

It was a good day after a lot of the stress and anxieties were settled. I'll let you know tomorrow if Ambien works with the Metro train running all night just outside the window.

Monday, December 6, 2010

And The Winner Is...

MIBG Therapy: The Saga in the Lead Lined Room.

At 3:40 PM we finally got the definitive call that sends us to San Francisco tomorrow morning to spend a week receiving treatment. The bone marrow biopsy result is still not in print, but the verbal, preliminary report shows improvement (decrease of cancer cells in the bone marrow), but still evidence of disease. We don't know how much, but enough that the doctors at UCSF want to proceed with the MIBG Therapy treatment option.

So the outlook is to receive this treatment, return right before Christmas to receive an infusion of one of his three previously harvested stem cell units to give his bone marrow a boost, and a few weeks after that William will undergo stem cell transplant.

This is a good step. This is progress. We are nervous and anxious, but we trust in our medical villages and in a loving Heavenly Father who hears our petitions.

Sunday, December 5, 2010

Waiting on One Result

The past week of scans, procedures, and blood products is behind us and now we wait for results. Actually, we have all the results but one. And that ONE is the determining factor in what treatment road we proceed down. So we wait for the call Monday morning to know if Tuesday's trip to San Francisco is a one day party or a week long party. (Transplant meeting to discuss risks and fill out paperwork vs. admittance for the MIBG radiation therapy).

On Thursday, before the bone marrow biopsy and aspirate, the MIBG and CT scan results were in our hot little hands. The doctor's overall summary of their contents was of improvement. But a few things aren't quite that settling to the parent reading the report. The liver metastases (cancer spots) are smaller and there appears to be no evidence of bony metastases. Good. However, there appears to be increased cancer cells near the resection site (where tumor was removed) which could be new disease, but also could be just residual cells, but no one really knows unless a biopsy in done and that is deemed to invasive at the moment. Not so good. We're trying to trust that it's nothing to cause alarm.

We hoped to get a sense of what the biopsy results might tell us from the scans, but we are still completely clueless and anxious. As we anticipated, it comes down to the bone marrow biopsy results to see what is left in his bone marrow because we want it as clean as possible before transplant. And that result must come last! At this point we feel peaceful with either road because both provide increased likelihood of the tumors not recurring.

Ryan and I often discuss the contents of our prayers because we feel like we have so little control over anything at this point. Of course, we pray that William will win this fight, but we know that it is not going to disappear overnight. Where would the fun be in that? A good friend shared in her testimony at church today a reminder that the Lord doesn't take away our challenges, but gives us the strength to get through them. So, although we want to plead with God that this trial will come to an end soon, even more, we want the wisdom to make the right choices and decisions at the proper times. Like King Solomon in 1 Kings 3:5-12, we will pray for an understanding heart.

Monday, November 29, 2010

Happy 6-Month Anniversary, Cancer

Six months ago, today, we changed. It's a good kind of change in a way no one chooses. So we're celebrating. And nothing says celebration like spending a day with the doctors and nurses we love so much! So we did.

We started the day at the pediatrician's office for Soren's 4-year well check-up. Here's the conversation half way through the immunizations.

Nurse: At least he's holding still fairly well.
Me: Or his mother is really strong.

Soren cried and thrashed and I broke a sweat, but he's now 5 shots richer!

Next, we zipped off to William's biweekly clinic visit to check his blood counts. He had a blood transfusion on Friday so I thought we'd be in and out before school pick ups. Wrong. He is still neutropenic and he needed more blood. Yeah, the blood that takes 3 hours to infuse and managed to keep him at the hospital 9 hours on Friday. I didn't see that one coming. His bone marrow is pretty worn out from 8 rounds of chemo, his recovery time is slower, and the red blood cells are being zapped about as fast as they can replicate.

We headed up to the out-patient floor for blood and earned a private room due to neutropenic status. There are perks, sometimes. Luckily the blood only took a couple hours to prepare and just under 3 more to infuse. (Did I really start that last sentence with "luckily"?) I was kept busy trying to catch the ball that was dropped regarding the scheduling of all William's scans this week. It all got sorted out eventually, but it means we'll be heading to the hospital for appointments each day this week. I'm trying to keep my thinking cap in working order as I juggle schedules and a husband who has to be out of town for a few days.

On our way home, William suggested a stop at Jamba Juice. How could I refuse? It was a celebrating day! He's come a long way these past few months and downed an entire Peanut Butter Moo'd during the drive home; all 470 calories! I can't remember the last time he finished one off completely. I'm doing the calorie happy dance. (William's not allowed to dance with me because he can't afford to burn off any calories!)

I suppose I should admit that we didn't actually realize the significance of today's date until this evening. This is good. So Happy Anniversary! We've made it six months and we're still happy; thoroughly exhausted and anxious for the chapter after cancer, but happy. Cancer may still be a very real part of our existence right now, but we are still smiling, still full of faith, still hopeful, and still thankful for the understanding that there is purpose in all things.

Sunday, November 28, 2010

Staying Put . . . For Now

Last Monday, William and I made it home just before midnight! He was so happy to be greeted by Grandma and snuggled on the couch with her while she read him a book. I wish I took a picture of the two of them with the clock in the background!

My mom and I thoroughly exhausted ourselves the next few days by moving all the boys beds and dressers, sorting through clothes and toys, and completely reorganizing all the bedrooms to allow William his own room. It looks fantastic, functions marvelously, and eases loads of stress in my endless quest to stay organized. We even managed to hide the enormous collection of medical supplies in our master bedroom that hid the fireplace from view. So at least for the moment, our master bedroom doesn't feel like the dumping ground.

We had a wonderful Thanksgiving with my mom, sister, Mary, and her husband, Erik, and daughter, Eliza. We missed not having my siblings, Matt and Angela, join us, but understand the influence of the weather and unexpected trips to the hospital when my dad earned himself an unexpected heart procedure on Wednesday. All is good and excellent doctors and the marvels of the medical field are the overwhelming theme of our Thankful list this year. We truly have hearts full of love and gratitude.

Before my mother's departure, we put away Thanksgiving decorations and put up Christmas decorations. It feels good to have things done as we anticipate many days in the hospital this month and will be commuting to San Francisco as well. The one thing we will miss this year is a real Christmas tree. Each year we drive up into the mountains and cut down our own tree at a small, family tree farm where any tree, any size, is about $30. We love this tradition and the Griswold in us comes out. Nothing less than 17 feet will do. I risk my life each year putting the lights and ornaments on, but it is so fun having an enormous tree!
Last year: Christmas 2009

Unfortunately, William's fragile immune system prohibits us from having a real tree this year. I snagged at 6 1/2 foot fake one for a steal on Friday. It was even pre-lit. I must quietly confess that I am grateful for simplifying this year. But the house won't smell the same.

Otherwise, the biggest milestone for us this week came on Wednesday at midnight. William made it past the previous mark for heading back to the hospital with a fever. But he couldn't let the nurses miss him for too long, heading back in on Friday morning at 9 AM for a routine CBC (blood draw and labs). His ANC was 0 and he needed a blood transfusion. I don't know what the deal is at the hospital lately, but William and Ryan spent 9 hours at the hospital for a 3 hour transfusion, plus any additional time needed to draw blood and run labs. Seriously? The hospital needed 6 hours for a single blood draw and to run labs? Most of the rooms on the floor were vacant! I am slowly learning patience...but will I ever have enough!?!

This coming week is expected to be full appointments getting a new round of scans and another bone marrow biopsy to see how effective the last round of chemo was. (Of course, I haven't been notified of the scheduled days and time yet). The results will dictate whether we show up in San Francisco on the 7th for the MIBG radiation therapy or the consult for the stem cell transplant where we sign all the papers acknowledging all the risks involved. (deep breath).

But for now, we are staying put and enjoying our own beds each night and a cozy little tree tucked in the corner that didn't give me a sore back for days!

Monday, November 22, 2010

The Clock Is Ticking

Finishing up round 8 of chemo is the name of the game today. And hopefully our last in Phase 1 of treatment. The post-hydration should finish around 10 or 11 PM tonight and we are cleared for discharge. The car is packed and we still have 3-4 hours to kill. Tick...Tock...Tick...Tock. I know, checking out near midnight? I'll spare you the obvious reasons why we'll pass on an all expense paid night at Hotel Sutter. (We hit our out-of-pocket maximums a long time ago!)

My mom flew in on Saturday night and got right to work lightening our load. We drove her straight to the hospital and dropped her off to take on night duty with William and most of Sunday as well. And last night, while Ryan was at the hospital, we stayed up until 1 AM talking and rearranging furniture. It's what we do.

With the anticipation of a soon-to-be radioactive son, his ongoing fatigue, and the ever-increasing energy and noise levels of his brothers, we are trying to figure out how to reconfigure the bedrooms and playroom to give William his own room. It feels like a daunting task when all I want to do is sit back and rest for a few days before we head back into the hospital. If only I could just wiggle my nose....

A few months ago I received a collection of inspirational quotes from a friend who has lived through the ups and downs of having a son with cancer. I pause to even say "the ups", but there are some; they are nestled inside the strength we gain, the people we meet, the lessons we learn. I keep these quotations next to my bed because that's where I do the most crying and soul searching. Well, there and in my car, but I shouldn't be reading while driving. I pulled them out to read again last night. I wasn't crying, just needing a feel good read. Here are a few that I like today:

"Enjoy the little things in life... for one day you'll look back and realize they were the big things."

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."

"Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart."

"Money can't buy happiness, but it can buy marshmallows, which are kinda the same thing."

Thursday, November 18, 2010

More About MIBG Than Anyone Cares

Our Tuesday meeting in San Francisco was fantastic. Well, as fantastic as San Francisco can be from inside a medical building. Oodles of information was absorbed and we finally feel like we are moving forward into the next phase of treatment. Our main purpose of the visit was to learn about an additional treatment option with I-131- MIBG.
  • What is MIBG? Metaiodobenzylguanidine (because you were all dying to know). MIBG likes neuroblastoma cells and when infused into a patient, it goes through the body and attaches to any neuroblastoma.
  • How does this work to kill the cancer cells? Researchers have found that combining MIBG with radioactive iodine created a highly loaded radioactive weapon against neuroblastomas. The substance attaches to the cells and then destroys its DNA, killing it.
  • Is it a standard form of treatment? No. It has been used since the 1980s, but is still considered experimental because of the relatively small number of children that qualify as high-risk neuroblastoma patients and only 5-6 facilities in the United States have the required lead-lined room to administer the MIBG substance.
  • How does William's case fit into this study? William is a borderline qualifier. Usually qualifying patients have recurrent tumors or are resistant to treatment. William's tumors have been very responsive to treatment, but a small number of cancer cells still remain, keeping him from being labeled as "in remission."
  • How effective is the treatment? After decades of administering this therapy to patients, 35% respond positively, 1/3 remain stable with little or no change, 1/3 lose the battle.
  • How is the therapy administered? It is infused into his bloodstream over 2 hours. He then becomes highly radioactive, so much so that he must be isolated in a lead-lined room for several days until the radiation levels decrease to a level safe enough to be around other people.
  • How is that managed? William may suffer from boredom, but he may love the independence too. Because the nurses have several other patients and can't be overly-exposed, Ryan and I will be his primary caregivers and have to rotate turns in small minute intervals as we are each permitted only 30 minutes of direct contact for the first day. Each day, as his levels decrease, our direct contact time will slowly increase. He will likely return home after a week, but will have to remain 3-6 feet away from anyone for a period of time.
  • How do we feel about it? The side effects are minimal and not much different than what he already has to deal with after 8 rounds of intense chemotherapy. If this therapy is needed, it improves the likelihood of a successful stem cell transplant and decreases the likelihood that the tumors will return. We feel so fortunate to live close enough to a facility that provides this option so we can fight this battle with everything available.
  • What happens now? William was admitted today, Thursday, for his 8th round of chemo. He will finish on Monday night and hopefully be discharged on Tuesday. The week after Thanksgiving he will go through another full round of scans and tests to examine his progress and the existence of any cancer cells. If the scans are clean, no evidence of cancer, he will skip the MIBG treatment and proceed directly to his stem cell transplant on December 13th. If cancer cells are still present, we will proceed to UCSF on December 7th and the transplant will take place 6 weeks later. (It feels so good to spout out exact dates that are still weeks away!)
  • More Big News! We also had the opportunity to talk with one of our transplant doctors. We learned that 2 weeks ago, the findings were announced from a clinical trial in Europe for stem cell transplant of high-risk neuroblastoma. 500 patients were used in comparing the effectiveness of the high-dose chemotherapy administered just before transplant to kill the existing bone marrow. The results were staggeringly obvious in favor of a new chemo cocktail. It was 16% more effective overall: 14% less recurrent tumors, 2 % less toxicity. (That's high in this cancer world). The pediatric oncology field nationwide has already begun to implement this changed course of treatment. William will be approximately the 4th child at UCSF to receive this new, updated course of treatment.
  • Blessings. Clinical trials often take decades to complete. We were quite discouraged by the stubborn cells that have needed more rounds of chemo. However, if William had stayed on his course of treatment and not needed additional chemotherapy, he would currently be in the midst of his transplant, having already received the round of high-dose chemotherapy, the one with a chemo cocktail now deemed less-effective.
  • Sometimes in life we get to see the reasons why and sometimes we don't. For us, this is an obvious time when we feel the hand of God in our lives. I know He is aware of our sweet William and our family. I know he can direct our paths if we have the faith to allow him to work miracles. We still have many hurdles to cross and many months full of unexpected events, but we will make it out better, stronger, more faithful, and more aware of the tender mercies that God gives us to remind us that we are loved as individuals.

Sunday, November 14, 2010

Long Break Brings Long Post

This past week had some highlights that are worth mentioning

  • Platelet transfusion. And perhaps I should add that a platelet transfusion is 30-60 minutes long. I'm still trying to figure out why we had to wait for over 4 hours in the hospital just to start the transfusion. I guess we still need to learn a little patience and flexibility. I do have increased gratitude for a friend that will keep my boys for 4 hours more than expected (along with her own four children)! Thank you! Thank you!
  • UCSF called to set up our consultation appointment for the MIBG therapy/treatment option. We head to San Francisco on Tuesday, the 16th.
  • Bone marrow biopsy. The oncologists and stem cell transplant team will be assessing this result very carefully to see how effective the new, additional chemotherapy was on eliminating the stubborn cancer cells from his left leg bone marrow. I suppose the MIBG therapy team at UCSF will also be very interested since William is one of very few children that qualify for their study.
  • Soren went to the clinic and hospital with me and William. For almost two weeks, Soren will randomly announce, "My tummy hurts. I think I'm going to throw up." We panic briefly, but nothing has come of it. We think it's linked with attention and how we respond to William when he's throwing up. I took him with us for the clinic visit and biopsy in the hospital so he can see where I go and what I do and what William has to do too. It's tricky trying to protect and care for all our children. I know we'll fail at some things, but I hope we'll succeed brilliantly with others, hopefully the ones that matter most.
  • William woke us up at 3 AM feeling sick and then threw up, barely making it to the bathroom. The nausea can sometimes be delayed after this past round of chemo, but he's been doing well and we were caught off guard.
  • He slept until 11:30 AM. We were so glad he got some needed rest, but wish he could rub a bit of that off on his brothers.
  • Clark woke us up at 3 AM to tell us William needed help and had just thrown up all over his bed. Clark is a tough boy, but he gets so worried and scared when William throws up. Clark said, "You need to take him back to the hospital, right?" I love how sweet Clark is, but it makes me so sad that he has to worry about some things that a 7 year old shouldn't worry about.
  • We all went to church together.
Two weeks ago our ward (church congregation) fasted specifically for William and two other children in our congregation, one also with cancer, and one needing a heart transplant. What is fasting? In The Church of Jesus Christ of Latter-day Saints, members are encouraged to fast whenever their faith needs special fortification and to fast regularly once each month. Typically, the first Sunday of each month is designated as fast Sunday. On that day, members who are physically able are encouraged to fast, pray, bear witness to the truthfulness of the gospel, and contribute a generous fast offering to help the poor. We go without eating or drinking for two consecutive meals. The offering should be at least equal to the value of the food that would have been eaten.

William was in the hospital that day, in the middle of a new and additional round of chemo. I want to express my gratitude for the fasting and many prayers offered in our behalf that day. I also want to share some of the blessings we feel we have received as a result of that fast.
  • The doctors offered us a possible additional treatment course that is only available in a couple places in the whole country. It has been effective in many cases in the past 10 years and due to our proximity to San Francisco, we now have more options.
  • We have felt added peace as we navigate a course of treatment that was not anticipated. It is still hard, but we feel confident that we will make the right choices when the choices present themselves.
  • William is eating more than he has the past 5 months. He has gained several pounds faster than he has previously. This is of great significance as he prepares for the stem cell transplant and needs the extra pounds to even tolerate the chemo that awaits him with the transplant process.
  • William was able to make it home for his birthday and stay home since then so we can be together as a family for a longer period of time than normal.
I am so grateful for the staggering amounts of kindness and support we have received from our families, our church, and our community. Many friends have welcomed our children into their homes at a moment's notice. Many, many meals have lightened our load after days spent in the clinic, at the hospital, or just trying to fight the fires at home that have been left unattended. Our home has been cleaned and our yard tidied. Emails, cards, and packages have yielded encouraging words. And countless prayers have been offered.

I am grateful for my faith that gives me daily strength. I am grateful for the knowledge of a loving Heavenly Father who has given us a plan and purpose for our lives. I am grateful for a Savior, Jesus Christ, who knows and understands the heartaches and sorrows, but also the joys. I am grateful for the tender mercies that confirm His love for me and my family.

Thursday, November 11, 2010

The Meaning of Gaps

One day, when I have the strength to reread these experiences, I will know when I was really tired and worn out; that is where the large gaps in days without posting will be. I'm still exhausted tonight as we've spent quite a bit of time in the hospital this week, but we've managed not to be admitted and stay overnight.

Perhaps I'll find some quiet time tomorrow to blog about the week since the kids don't have school; it's a teacher work day. It will be nice not to have to drive the kids to and from school, but who am I kidding? It will be loud and crazy and I'll have to remind myself often how good it is to all be home together for a change. William is doing well. His immune system is finally in the upswing and we anticipate some good days until the next round of chemo starts next Thursday.

Until tomorrow. . . or when I'm not so tired and crashing at 9 PM.

Sunday, November 7, 2010

Happy 9th Birthday!

Today was spent in style: all together as a family at home!

William had a great day: "Mom, this is the best day. You and Daddy are doing a great job!" Thanks. He loved talking to friends and family on the phone and hanging out in his pjs all day. Wait, he hangs out in his pjs almost every day.

I love you because you are patient, brave, tender, smart, thoughtful, optimistic, loving, happy, and funny. We are so grateful you are part of our family! Happy Birthday, our sweet William!

Friday, November 5, 2010

Do We Want a Lead-Lined Room?

I try not to slip and call our hospital room "home", but sometimes it happens. Since September 28th, we've been in the hospital 26 days. But who's counting?

William has been fever-free since we were admitted and his blood cultures are still negative for any bacteria growth. This is good since these are both criteria for discharge. However, his ANC is crashing and is probably at 0 as I type (no active immune system). Typically, this means we can't go home until his numbers rise above 500. Last cycle, it took 6 days for his ANC to start recovering. I don't want to stay 6 more days!!! Fortunately, the doctor is willing to put William into a small group of exceptions due to his comfort with our care at home (and probably due to my constant probing of the possibility and expressed desire to be home for William's birthday.) So, with fingers still crossed and hope alive, William will be discharged in the morning.

Other noteworthy news:
Dr. Lee, one of our oncologists, informed us that UCSF has a neuroblastoma research team that is interested in William, or more specifically, his case as a high-risk, neuroblastoma cancer patient who needs additional treatment after the standard protocol. They use MIBG, a radioisotope, in therapeutic doses to fight the neuroblastoma cells. Basically, they administer very high doses of this highly radioactive substance and it helps fight stubborn cancer cells. As a result, he is put in an isolated, lead-lined room to minimize contact/contamination with medical staff, parents, and other patients. During the first 24 hours, parents are allowed 30-45 minutes of direct contact with their child. The visitation time increases each day as the radioactivity decreases. Is this what it takes to get a private room?

UCSF is reviewing William's medical file to decide whether or not he is a good candidate for the treatment. It was first administered in 1999, but is still considered experimental due to a relatively small number of children with high-risk neuroblastoma. We will meet with them in the next two weeks to discuss the details and then Ryan and I will have the final say if we will have William participate. Dr. Lee thinks William should participate if he qualifies. It's very sobering to think that although William has come so far and done reasonably well, he still in a steep uphill battle.

Everyone says we are handling things well. Perhaps we are and frankly, I don't want to consider the alternative. (Then I'd be popping a very different little white pill!) Sometimes I would like to burst into tears and convince them otherwise. I know we won't be given more than we can handle, but what do I need to do to show that we're there?

Wednesday, November 3, 2010

Just in Time?

I made an apple pie for William today. I promised it to him over two months ago when I didn't finish reading Harry Potter #2 by a certain date. (All sorts of bets are made around here to encourage the consumption of calories). I figured I'd make it today since the apples I bought still remained hidden in the refrigerator and William's appetite is awesome right now.

It's a bit after 11 PM and we just took his fever because he felt warm and we had to get him up to give him a shot. We spent 20 minutes taking it various way, and multiple times in case there was some thermometer error. Nope. He has a fever. We're heading back to the hospital right now. At least we made it just over 24 hours at home.

Tuesday, November 2, 2010

Strength and Gratitude in Hard Days

Thank you for the kind, and supportive response to my venting. On hard days I often think of my ancestors. Strength comes from the record of their really hard days, not the easy days. I want to have the faith and perseverance they had. The saying comes to mind, "I never said it would be easy, I only said it would be worth it." It is and will be worth it and some days I feel it's more worth it than others.

William came home today and we are thankful. We'll sleep in our own beds, eat non-hospital food, shower, wear clothes we didn't wear yesterday, listen to sibling squabbles and we are thankful. Did I mention Cameron threw up today and my washing machine broke?

Still thankful.

Saturday, October 30, 2010

Bobbing for Air

Today is a venting day. Lately, these days seem to come closer together. As chemo progresses, it is harder for William's body to recover between cycles. Likewise, it is harder for me and Ryan to keep it together. The stresses of our "flexible" lifestyle keep getting harder. We feel like we're drowning, gasping for just enough air before the next wave crashes. I hate it! I really hate it!

I hate being able to measure the time I've seen my husband in the past four days in minutes (especially since he's not out of town). I hate that the time we've actually talked is filled with stress, worry, scheduling, and a sense of inadequacy. I hate having to meet up at a gas station to trade the boys and rush off to the next commitment just in the effort to maintain some warped sense of normalcy. I hate having my children cry because one of us can't be at their soccer game. I hate over-analyzing every word the doctor says. I hate being in the quad room with a screaming toddler at 5 AM. I hate suddenly breaking down in tears while driving down the street. I hate trying to hold the tears back in front of my children. I hate the worry on my children faces when I do cry in front of them. I hate hospital pillows. I hate waiting for the doctor to call and run to the phone just to hear a political recording. I hate my children's fascination with the porta-potties at their soccer games. I hate lima beans.

Whew. I feel a little better. I sometimes feel guilty feeling this way because trials aren't meant to be compared and our family is truly blessed in many, many ways. I'm really not complaining so much as venting the hardship, stating the reality. Perhaps there is not much difference, but I am truly grateful for this refining process, albeit fairly painful at times. I don't want to forget some of the feelings I've felt so that I can see the increased strength later on down the road. And hopefully others can relate and know that what they are feeling is normal. Of course, I'm making a huge assumption I'm acting normal. At the end of this journey, I want to be able to render more meaningful service as a result of being the recipient of so much. I want to ease the burdens that countless people have eased for us. I want to be able to sleep through the night.

I just learned Ryan got William switched to a new room with no roommate, the boys are excited to take William some of their candy, I'm going to sleep in my own bed and with my own pillow, and we're taking another deep breath.

Friday, October 29, 2010

Wizards, Pilots, and Werewolves


Is it crazy to say we are so glad to be in the hospital today? It was a fantastic day!

First, this round of chemo cocktail seems to have milder side effects than previous cocktails. William has eaten some food (rare for him in the hospital) and been in good spirits (also rare in the hospital). We're hoping this continues.

The pediatric floor has been buzzing with excitement. The playroom was full of costumes for children to borrow, children were beaming with Halloween excitement, and cameras were snapping away at children all dressed up with somewhere to go. At 1 PM (it felt like forever watching the clock), all the children healthy enough to leave their rooms got to go around the hospital to various offices and nurses stations. We went trick-or-treating to the basement and all over the first floor in parts of the hospital most people never see. It was so much fun! William described it as a spooky Christmas. No candy was given out due to many diet restrictions for these kids so toys and trinkets were handed out. Have I mentioned how happy these children were? The staff loved seeing the kids and chatting with them too. I think I loved it so much because it made my heart so happy to see all these kids so happy. William, Spencer, and William were like the three little amigos. So fun to listen to them discuss costumes and Halloween. And a huge thank you to Aidan Z. (and his mom) for letting William borrow the Harry Potter Quidditch robe and broom at the last minute! And thanks to William K.'s mom for finding the glasses.

Trick-or-treating in the surgery wing, Make-up, Harry Potter and Professor McGonagall

Spencer (werewolf), William (Harry Potter), William K. (Red Baron)

Thursday, October 28, 2010

Friends and Helicopters

William checked back into the hospital and started Round 7. (sigh). And we are stuck in the quad room with three other roommates. (big sigh). Many people call this room "The Projects"! So appropriate! However, we got lucky with our roommate, Spencer. He is William's same age and we've been wanting to meet him for a while. Lisa's (good friend and guest blogger) husband, Dan, was college roommates with Spencer's dad. Got that? Small, crazy world. Too bad it's the cancer world.

As parents, the emotional roller coaster continues. On Monday, Dr. Hsu informed us that more chemo was likely and more chemo means a minimum 2 more rounds, not just 1. Today in the clinic, Dr. Lee said William will be reevaluated after this round, but didn't clarify how many chemo rounds were expected. I neglected to ask for clarification and eagerly mistook it as one additional round being possible. Reevaluation (bone marrow biopsy) always occurs after each round with William. After we were admitted, Dr. Yim stopped by the room and said he suspects William to need 4 more rounds based on previous patient experience (obviously his educated opinion at this point. I think I may be bald too by the time this is over! I keep repeating in my head, "Every child is different. Every case is different. And there is no reason why William can't be the exception. Miracles, big and small, happen."

So we continue our juggling act and try to enjoy something each day.

Here's what made Wednesday a good day!

Joe, William, Carson

William and James

One of the frustrating things about this whole process is the inability to plan fun things. Correction: it's the inability to guarantee the participation in fun things. So we've taken the impromptu approach; we don't plan too much and sometimes it's more fun that way.

For instance: helicopters at school.

I heard the helicopters Wednesday morning and thought, "Oh yeah, that's today. The boys will have lots to talk about this afternoon. Wait, William's healthy and home and we have about an hour before we have other commitments." We quickly piled in the car and headed to school. It was awesome! It was quite the event: 2 helicopters, undercover officer and vehicle, police horses, canine unit, narcotics officer and truck, etc. William loved seeing his friends too and his friends loved seeing him. I think it was great for his friends to see him on such a healthy day and be reassured that he's still the same William. Some of them begged him to take his hat off, but William didn't give into the peer pressure! :) Sometimes he is self-conscious about his head and sometimes he not.

Here's to good days!

Wednesday, October 27, 2010

Additional Chemotherapy

Today we had a fun, impromptu excursion to the elementary school for Red Ribbon Week. Details and pictures to come tomorrow, hopefully. I'm just too tired.

Other noteworthy news:
  • The doctor's office called today with the updated chemo schedule.
  • The stem cell transplant will be delayed.
  • William heads to the hospital tomorrow morning to begin round 7.
  • It's a 5 day infusion process which means he'll hopefully be discharged on day 6, next Wednesday.
  • Tears were shed over being stuck in the hospital on Halloween, but we'll make memories, right?

Tuesday, October 26, 2010

Happy Birthday, Dear Soren

He's 4!

Me: What's the best part about being 4?
Soren: You get to turn 5 next!

He's always one step ahead!

You are so clever, silly, tender, smart, handsome, and fearless. We can't imagine our family without your energy. We love you, Soren!

Monday, October 25, 2010

Monterey, Marrow, Math

Friday morning we escaped as a family to Monterey for the weekend. We desperately needed to get away from some of our realities and just be normal (or normal enough). Our options of getaway locations is somewhat limited as we must remain within a 2 hour proximity of our hospital (not any hospital) and remain in cell service. We stretched the distance a bit with Monterey, but the doctors were aware of it and a blood and platelet transfusion just before Thursday's discharge gave William an extra boost.

We spent parts of two days at the Aquarium, played in tide pools, went out for ice cream, ate delicious clam chowder, walked and walked, and just enjoyed escaping from our everyday routine. We finished off the trip by spending Sunday in the Bay Area visiting my brother and sister and their families. The boys were beyond excited to see and play with their cousins and it was nice for Ryan and I to have a few scattered moments to visit with the adults.

Thank you to the cleaning fairies that cleaned the house when we left! I so appreciated walking into a clean home late last night. And it lightened my load today since we were back at the doctor's office this morning and thrust back into unpredictability of our lives.

The myriad of test results from last week came back and were the focus of today's office visit. It's been an emotional day and I have to keep reminding myself that William is still making progress, even if it's not the way it was supposed to neatly play out. I feel drained and tired, so I'll be brief.

The bottom line is there are still cancer cells in the bone marrow of his left hip (estimated at 5%). Patients typically don't proceed to stem cell transplant until the bone marrow is clean. It is up to the transplant team at UCSF to make the final call as to whether we proceed to transplant or remain here and receive additional chemo. I don't know what I was expecting to hear from the doctors today. I was prepared and assuming William would receive additional chemo before proceeding. I think what caught me off guard was assuming one additional round would be needed and learning chemo cycles are administered in pairs and he would likely need two more rounds before reassessing his bone marrow.

I started the math:
2 rounds=6 weeks, minimum
1-2 weeks as a cushion for likely prolonged recovery
2+ weeks after that for likely scheduling and planning for transplant.

=some time in January for transplant. (We had hoped for November or December)
+ radiation after that

Today is day 21: the day he usually starts the next round. We're not starting yet. We have all these things spread out in front of us and we have no idea what happens next or when. That's why I cried today. We now sit and wait for the phone to ring to tell us what to do. If more chemo is the answer, do we start the next day or next week? What about the timing with Halloween, William's birthday. . . . Some things don't matter and birthdays and holidays can be celebrated any day we choose, but we can't even do that yet. All these numbers and calculations and we can't do anything about anything. We just wait and live today, preparing for tomorrow.

Tomorrow will be better after a good night's rest and partying it up with a 4 year old all day long!

Friday, October 22, 2010

Getaway Car!

In a stroke of rare rental car fortune, Ryan received a convertible Ford Mustang for a business trip to Napa this past week! (Obviously the above pictured car is not that car: Read on!) Clark, Cameron, Nathan, and Soren cruised the neighborhood and arrived to school in style the morning the car had to be returned. William was beyond excited to see the car and have a ride, but unfortunately he was still stuck in the hospital much longer than originally anticipated. He burst into tears when he heard the car had been returned. Luckily, Ryan is on good terms with his supervisor who drives a red, convertible BMW. It was easy to convince William this was way better than a Mustang. (Sorry to any Mustang lovers out there!) Thanks, Mary, for the best getaway car ever! What an adventure!

On Thursday afternoon, William finally headed home after a bone marrow biopsy and aspirate, full body bone scan, and audio-gram. The audio-gram showed moderate hearing loss in the high pitched tones. For instance, if there were high pitched birds chirping softly, he wouldn't hear it. So it's not bad, but a parent never wants to see their child suffer any sort of ill side effects. They will monitor him monthly or so and there is always a possibility it may not be permanent. On the bright side, maybe he will be a better father because he won't be able to hear the high pitched whining of his children! We will hopefully find out the rest of the test results on Monday when we see the doctors again.

Now we're enjoying some much needed family time since this weekend may be one of the few weekends we have left all together as a family for the next several months. And even after the transplant occurs, William won't be allowed out in crowds for 3-6 months.

Tuesday, October 19, 2010

Still Neutropenic

William isn't recovering as fast as I would like. But since when did I call the shots? ANC is still 0. This is a new record for length of neutropenia. Tomorrow will be day 5 of a hospital stay we thought would be 2-3 days. He had a kidney scan today (GFR) and was injected with the dye for his MIBG scan tomorrow. I'm doubtful we'll be discharged tomorrow; no logical reasoning other than just starting to be a bit pessimistic. We're just hoping to bust out by Friday so we can leave town and have some family fun for the weekend since this may be one of the few weekends left we'll have together for a few months (pending test results and transplant scheduling).

Other news: I have an amazing sister who is fighting the fires at home. Thanks, Mary. And thanks to her wonderful husband, Erik, for playing bachelor for an unspecified length of time. Also, Clark lost a tooth! Yay! Ryan and I didn't even know one was loose. How's that for attentive parenting? (Dear Tooth Fairy, please remember!)

Oh, and remember that quad room we were stuck in last time? I actually try not to think about it. We may be stuck at the hospital again, but at least we're not sharing a room (for the moment).

Monday, October 18, 2010

On The Mend

So you'd think (at least I think) after as many treks to the hospital as we make on a regular basis, the things we take to the hospital would be automatic, second nature---kinda like loading all your children in the car. Okay, so perhaps we're not always perfect....

I brought the boys to the hospital Sunday afternoon to visit and to switch out hospital duty with Ryan. It was crazy and loud and somehow the boys are always suddenly hungry when we get here. They raid the refrigerator of soda, juice, popsicles, ice cream cups, saltines, and graham crackers. I suppose I'd feel more guilty if William ate more and if the boys actually visited often. Both seldom happen. After the boys all left and I settled in, I realized I forgot my Harry Potter book (I'm trying to catch up with William), my hair brush (not my fault---little helpers played in my bag), and my laptop. Gasp. That's practically an appendage. However, the weaning process is going well since the introduction of my new phone into the family. But it's nice to be reunited nonetheless.

William is still in the hospital and it looks like Tuesday or Wednesday he should head home. His immune system has not started to recover: ANC still 0. I went back through all our lab results over the past 4 1/2 months and double checked the recovery trends. I was sure he was off-trend, but discovered he typically recovers on day 9 or 10. Today is day 9, so he's still within the norm. A day or two extra, given he's completed 6 rounds, would not be too unexpected. I'm such a nerd! Fortunately, we're getting several of the scheduled scans out of the way while we're still inpatient status.

The mouth sores seem to be on the mend as he's been eating a bit more. But I don't want to exaggerate here, it's more like grazing and it makes me hungry just agonizing over the speed and quantity of his eating. He still needs to swish with a numbing cocktail and have a dose of morphine each time he eats. He also seems to be on the mend because he's chatting up a storm. (Our day nurse received quite the explanation and demonstration of Angry Birds!) Another sign of healing is William's eyelashes and eyebrows. If you look closely, he has eyelash and eyebrow stubble! It's the simple milestones we relish!

Ryan and I escaped Saturday night for a very, very needed date. A HUGE thank you to two fun boys from church and their mother for having a game night with William at the hospital and a great neighbor girl who was willing at the last minute to watch the other boys so Ryan and I could go out to dinner and triple our caloric intake for the day! It was a much needed ending to a stressful day and after a good cathartic cry.

The boys all seem to be doing well considering what their world has become. Sometimes it seems like the younger ones have no idea that our lives have been turned upside down. That's our general objective. We want to protect and nurture, while understanding they are smart and perceptive. It is obvious they feel the strains too sometimes. The other night while saying family prayers, William said, "Please bless that our life won't be so hard anymore." My eyes welled up with tears and Ryan and I stole a glance at each other; the kind of glance that pulls at the heart and makes you take a deep breath and push pause while you hurry and take them in your arms.

I am curious to see the ways our family is strengthened through this journey. It may take years for me to be able to go back and read what I have written. I skimmed over some older entries recently and it was too hard to revisit some of the events and emotions. One day I hope my children will read this journal and find comfort, understanding, peace, faith, guidance, counsel, patience, hope, acceptance, kindness, answers . . . and above all, a knowledge of the love their parents and Heavenly Father have for each of them. I love you, William. I love you, Clark. I love you, Cameron. I love you, Nathan. I love you, Soren.

Friday, October 15, 2010

Staying on Trend

Fever hit tonight and it's off to the hospital for a couple days of R & Rx.

Gearing up for a week of tests and appointments:
1 clinic visit (the other one will be canceled due to hospital stay)
1 surgery follow-up
1 CT scan
1 MIBG scan (specific to see neuroblastoma cells)
1 GFR (kidney scan)
1 Bone scan
1 Bone marrow biopsy

And as our life of flexibility goes, I only know on which day 2 items will occur and the times are yet to be set. But everything should happen this next week.

These tests/procedures will give the oncologists a more accurate map of William's progress. There is a chance William will have an additional round of chemo (round 7) before proceeding to the stem cell transplant if his bone marrow is not clear of cancer cells. His last biopsy, before surgery and round 6, showed one leg clean and one leg with a tiny amount of cells still remaining. His bone marrow must be completely clean for transplant. If he needs another round of chemo, it will set us back another month or so.

Wednesday, October 13, 2010

Who Invented The Drive-Thru?

Harry and Ester Snyder of the "In-N-Out" chain. Another reason to love "In-N-Out". Bless their souls and all the drive-thru restaurants out there! And bless the friend who reminded me today of their true coping value!

Germ high alert is the theme of this week. William's ANC should hit zero soon if it hasn't already. This reflects his immune system's ability to fight off any germs and he is at high risk for infection. If he continues with his trend of previous cycles, tomorrow afternoon he should spike a fever and then be immediately admitted to the hospital for a minimum 48 hours stay. However, he is doing great and I'm hopeful he can break trend: hasn't thrown up, no mouth sores yet, no bone pain. He's quite a bit more tired than usual (okay, we'll give him one side effect), and will probably be due for another blood transfusion by this weekend. We couldn't let the nurses miss us too much!

I spent all day Monday cleaning, sanitizing, and organizing after a two week absence from my daily to do lists. I must admit, I got a little carried away and did some deeper cleaning that perhaps wasn't needful, but this is a coping mechanism of mine. It could always be worse.... Tuesday I spent recovering. And today I spent cleaning and cycling rugs and towels through the laundry. This was not on the planned agenda.

I'm not sure where I went wrong, but somehow my boys have an incredible fascination with a flushing toilet. Unfortunately it's not when and what they should be flushing. I started my morning off pulling, yet another, toilet off the floor to snake it from the bottom up, hoping to find the clogging culprit. This makes toilet removal #4 in the past year. Numbers 1-3 were all within a 6 month period. Pulling a toilet off the floor is not my first line of defense. I plunge and snake and plunge and snake and let my frustration boil for a bit. It's gross and nasty and makes me have greater love for the plumbers out there, but I'm not willing to pay one . . . yet. After a few additional snakes and tilts of the toilet, Ryan pulled out a small plastic box from a travel sized dice rolling type game. Arggg! I installed a new wax ring and bolts and got the toilet back on and then began the cleaning and sanitizing. Again. But the bathroom smells delightful now!

William has been hard at work on his K'Nex roller coaster he earned for having finally hit 60 lbs. before surgery. Unfortunately he's back down to 52 lbs now, but he worked hard for the 60 lbs. He finished the roller coaster last night and it's his pride and joy. Today I let him go to the fire station with Sam and Cole and Sam's mom. The three of them are in a mad dash to finish their Wolf badge requirements for cub scouts before they turn 9. I was hesitant to let William go, since he is probably neutropenic today, but it's a fine line between restrictions that cancer defines and resilience and normalcy that he defines. Cancer lost. William had a fantastic time! The fire fighters were a little late for the tour because they just got back from a house fire and halfway through the tour the sirens went off and they all scrambled and left on a call to a car accident. Although the tour was cut short from the typical tour items, the boys loved seeing them quickly pull on all their gear and head out of the station. I'm glad William got to experience something exciting today.

Sunday, October 10, 2010

Bedtime Yet?

Surgery done and successful

Round 6 of chemo completed

Home from the hospital on Friday at 6PM

Nausea under control

No mouth sores---yet

Very skinny

Working on increasing appetite

So happy to be home

Very grateful Grandpa Chad was here to take care of the boys

Mom and Dad exhausted

All going to bed


Thursday, October 7, 2010

Staples And Short-Lived Fame

Twenty-two staples were removed today. William did great and we had some fun before they were taken out.That's a zipper tab on the end of the scar and the dot below is supposed to be William's mole on his chin.
He was a trooper and winced just a couple times. A dose of morphine beforehand helped to ease the whole process.

We're still working on eating and his nausea medication was upgraded again. He is now on a continuous infusion of Zofran. We're shooting for discharge tomorrow afternoon and I'm ready to collapse in my own bed. I had the worst night sleep yet last night. Let's just say I wish I knew what the other two mothers took last night because I had to call the nurse each time their child's IV pumps started beeping during the night (and it was multiple times). I have to call the nurse each time for our roommate too because he either sleeps through it or has his headphones turned up too loud. And William is being hydrated with so much fluid to help flush the chemo out of his body, he has to get up several times during the night too. And none of the beeps and bathroom breaks seemed to happen at the same time!!!

The other cause of excitement and then tears was the long awaited airing of the PBS documentary about canine companions on "Healing Quest". William was interviewed back in June with Millie, one of the dogs used by Child Life here at the hospital. We love the dogs and have watched them work their magic with William on many occasions. Our good friend, Claire, and her sister, Jessie, are also in the documentary. William was so excited to see it, but broke out in tears as he was referred to as Billy. We have no idea how they came up with that because Ryan even refers to William as William when interviewed. William said, "I hate the name Billy and it's not me." It broke my heart. Luckily Millie was just outside our door on her way home when we watched the clip and the tears came. Millie came in and William got to stroke her for a few minutes until he felt better. It aired in San Francisco last week and airs here in Sacramento on Sunday at 11 AM on KVIE (PBS).

We love Millie, Hazel, and Greta and their fantastic handlers. Our hospital has an amazing Child Life program and we have really grown to love many of the specialists.

Wednesday, October 6, 2010

Beta to Guppies

In the PICU we were a beta fish. We had a private room. Well, as private as a fish bowl can be. Our room had a glass wall, floor to ceiling. Now we're a bowl of guppies. We're sharing a room with not one, but three other roommates. Can you hear me screaming inside? I don't love being in the quad room. It's the pits. But I could think of worse, i.e., screaming infant, constantly vomiting child, child with all extended family coming to visit at the same time and staying for hours.... We'll pay our dues and hope we earn a "Get out of quad room free" card. I'm probably being overly dramatic because none of the other three kids is particularly loud or needy, but it does mean many nurses in and out throughout the night for each of their patients.

Our roommate is a nice and pleasant boy. He's 15 or 16 and doesn't spend much time in the room because I'm sure he doesn't love it either and would rather hang out with the other teenagers here. So it's all good and we'll just keep counting down the days until we're home. I'd hate to be filling a spot in the quad room that perhaps someone else needs more than we do!

William is doing okay. He seems more nauseated and we've been increasing his nausea medication. He's managing to keep everything down, but then again, he's also not eating because he feels sick. He says he's seeing double and we think Ativan is the culprit, but we'll keep monitoring and hoping the nausea is controlled by the increased Zofran. But all in all, he is pleasant and wants me to just hold him. I love that part! Dad may be good at being his MarioKart buddy and stay-up-late buddy, but he asks me to hold him. I need that as much as William does.

Thanks to Lisa for posting the pictures yesterday. It was great to see all the boys together. I wish I would have taken some video so you all could hear how loud they were. Good times, but the noise didn't land us in a private room. Better luck next time.

Yesterday was hard for me. That translates to a hard day for Ryan. It's often hard on our marriage. I know our marriage is strong and will survive, but we are having plenty of opportunity to improve communication and demonstrate understanding. I think part of the difficulty yesterday was just all the stress of the past week that built up, but never surfaced because of the continued need to hold it together. Yes, folks, I still lose it from time to time (and so does Ryan). Some small, insignificant, and often unrelated event usually tips the bucket and the tears spill. I had a few reminders yesterday that I can't control much in my life and need to keep letting the little things go that really don't matter. But I want them to matter.

What I've listened to so far from General Conference has filled my bucket and helped me keep things in perspective. (I love that my new phone lets me listen to the talks during my 30+ minutes in the car between home and hospital!) I have so much to be grateful for and each time I find myself complaining, I realize how blessed I really am. This chapter in our lives is hard and it stinks and I want it to end (that's stating the facts, not complaining), but I don't want to miss out on learning something I need to learn or gaining strength I may need to sustain me or my family somewhere down the road. So I'm trying to learn some serious patience through all this. Ryan is much better at patience than I am. I love that about him and need him to have much patience because I can be quite stubborn and opinionated.

I saw this video today and hope I'm holding out for a whole plate full of marshmallows!

Tuesday, October 5, 2010

Wii Therapy

Hi everyone, friend Lisa here tonight. I get to share fun photos. Tonight I took my son, James, and two of Will's other wonderful and funny friends to the hospital for a visit. I just love this first photo- a boy who gets out of bed, drags his pole over to the TV to get the Wii going, shoves his Chemo drip out of the way and plays MarioKart with his friends is one amazing kid!Cole and Will On the left- James, Cole Will. Look to the back right and you can see Sam.This photo is also funny because it has four intense boys in the middle of a quad room (maybe Will will get kicked out into a single room because of his rowdy visitors?:)?) making a lot of noise at times. The nurse is adjusting Will's IV behind him but no one looks away from the game.

I brought the wrong lens and had to go into other patients' rooms to back out to get the boys in the shots (another reason for a single room!). It was a good visit and the scar is even better in person. Julie and I got to talk in the hall and we never run out of things to say! If you don't believe me, just ask AT & T and Verizon about our phone bills lately.

Thank you both for the visit. Go to sleep, Julie!

Monday, October 4, 2010

Walking on The Wild Side

Here's a quick rundown of today's progress so I have it documented:
  • Disconnected from all IV connections.
  • Took a shower (scrubbed off all residual "stickies" from surgery).
  • Took several walks around the hospital floor and even got cleared to take a walk outside.
  • Walked on the wild side, or should I say, walked across the street just to say we left hospital property for a few minutes.
  • Increasing his solids intake---he should have more room for his stomach with the tumor and kidney absent.
  • Abdomen still quite tender and pain in shoulders from air bubbles still working their way out from surgery.
  • Pain will now be managed by morphine and Tylenol w/codeine as needed.
  • Still in PICU, but only because of staffing issues on the regular floor. Will be transferred in the morning.
  • Scheduled to start Round 6 of chemo in the morning.
  • Hoping to be discharged by Friday afternoon, pending nausea control.
  • Grandpa Chad is taking his shift at the hospital tonight---we'll see how he likes the sleepchair!

Sunday, October 3, 2010

Leaps And Bounds

In the past 24 hours or so, William has greatly improved! He finally got out of bed and made a slow, assisted hobble around the PICU. He pushed his morphine button 5 times during the walk. Hey, that's what it's for, right? After returning to his room, he found a hospital Game Cube gaming system from Child Life parked outside his room. That made the walk worth it. He did a great job maneuvering himself back into bed so he could play video games. He still needs quite a bit of assistance, but he's moving himself around more than I would if I had an incision like his. A plate of fruit had also been delivered from the cafeteria so I set that beside him in bed. He exclaimed, "This is the life! In bed, playing video games, and eating fruit. This is the life!" The nurse and I just laughed with delight at his happy perspective.

All his brothers came to visit this afternoon too. William enjoyed handing out packs of Skittles to each of them, but I think their commotion was a little draining on him by the end of their visit. They all ooohed and ahhhed at the scar and then wanted to know where the kitchen was with the fridge full of chocolate milk and Sprite! It was nice to be together as a family and I hope it helps the boys to have a physical image of where William is when we say he's at the hospital.

The other highlight of the day was Connor's visit. Connor has a liver disease called Congenital Hepatic Fibrosis and has spent his share of time in hospitals. He had surgery at the end of December to reroute some veins going from his spleen to his liver and reconnect them to veins going to his kidney. So basically, serious business going on in similar parts of the body as William. Connor is a true fighter! He was nice enough to come show William his scar. It was amazing to see! Connor's scar is the same shape and in the same place as William's scar. For being only 9 months old, his scar looks fantastic. It is so light and Connor even said it's shrunk! Thanks, Connor (and Jared and Tiffany)!

I know my picture quality is a little grainy, but isn't it great that you have to look so hard to see Connor's scar?

Saturday, October 2, 2010

Birthday, Progress, War Wounds

Happy Birthday, Clark!
We love you so much and the laughter and silliness you bring to our family!

William's progress:
  • Speaking.
  • Epidural removed.
  • NG tube gone. I discovered it pulled out around 3 AM. Still not sure if he pulled it out in his sleep or coughed it out, but at least it's not being put back in.
  • Took his first sips of juice. Had only clear fluids on Tuesday and nothing at all since early Wednesday morning.
  • Off oxygen. He was put back on it during the night when his left lung appeared to have greatly diminished capacity.
  • PCA hooked up---patient controlled analgesic which gives him a button to push to control his pain.
  • Sat in a chair for a few hours.
  • Foley in bladder removed.
  • Incision bandage removed.
Caution: The following will be a life long reminder of a mighty battle. But chicks dig scars so the pain will ease over time! It contains 22 staples which finishes off the many, many stitches in the underlying layers.