Saturday, July 31, 2010

Waiting on Evacuation Orders

It's 6:46 PM and William and I are sitting in the hospital. We arrived at 9:45 AM for a simple blood draw and labs. Usually a 1-2 hour excursion. Today it will be close to an 11 hour excursion. William is currently receiving a platelet and blood transfusion. But not at the same time for any of you medical minds who gasped while reading. Evidently it's really bad to transfuse the two at the same time (bad side effects).

But even better, I'm frustrated with UCSF who was supposed to read our labs that were faxed (the whole purpose of today's morning visit) and let us know if the harvest is still on---kind of a big deal in the Book of Mother's Caring for Their Sick Child Who Has Cancer When Children Are Not Supposed to Get Cancer! I'm practicing patience, but it's hard when the doctor forgot to check the fax machine and has gone home already. So he'll call me in the morning when he gets in and will let me know whether to go to the hospital here for one more lab and wait period, go straight to S.F. or just go back to sleep because the whole thing is off. (read with as much sarcasm as you can muster!)

I blame my dad for rubbing off on me when I find myself thinking up life lessons for seemingly meaningless events. Thanks, Dad! I think?! Sometimes I wish I could just let those events pass. But in the case of today's thoughts, I consider the life lesson fairly poignant.

As I keep a packed suitcase and continue to refine what I need and don't need---sometimes learning the hard way (Thanks, Denise for breaking into my house and bringing my cell phone charger this week!)---I can't help but think how being ready to go at a moment's notice applies to the "big" picture: LIFE.

This past year I finally started my food storage. What is that you say? It is a gradual stock pile of life sustaining essentials so that if a rainy day should occur, our family will survive without needing to burden others. I've dry pack canned things like rice, flour, sugar, oatmeal, beans, and powdered milk. And I buy up extra things when they are on sale, i.e., tomatoes, green beans, evaporated milk, brown sugar, granola bars, cereal. We have two 50 gallon drums of water and smaller bottles in the house. We planted a garden. I've purchased extra first aid items, a small propane stove, and extra wax rings for the plumbing adventures that happen with lots of little boys! (I can whip a toilet off the floor and find a clog with my eyes closed. Well, almost closed. I squint and hold my breath)! We have also tried to set aside extra money in our savings. (Your welcome, Medical Insurance Company!) This gives our family the assurance that we can be self-reliant and prepared for any emergency. We're not there yet.

Going a step further, Ryan and I try to teach our children the qualities they need to be productive members of society. I hope my children know about our faith and dedication and that of their ancestors, understand the value of hard work, education, patience, love, kindness, empathy, gratitude, service, and cheerfulness. I could go on and on, but it's a little depressing because I realize how much work I have to do. I want our children to know how much they are loved and the greatness they can achieve.

We never know what is around the corner. That's part of life. It was in the fine print when we all signed up! We prepare each day so we can tackle the trials of tomorrow. Sometimes we have false alarms, but those keep us in check and help us realize our strengths and weaknesses. In the end, we are stronger and more prepared than we were when we started.

Now that I have that off my chest, I'll sit and work on my attitude while I wait in frustration for our evacuation orders to send us to San Francisco.

p.s. William wanted to make sure I let you all know we got a new windshield. Now I just need to find time to get a police officer to sign off on it. I better not get a rock chip any time soon!

Friday, July 30, 2010

Overload and Anticipations

Yesterday felt like brain overload. The home health nurse came in the afternoon bearing 2 very large cardboard boxes filled with syringes, needles, alcohol pads, tubing, caps, nutrition bags, lipid bags, vitamin vials, and lots of other various medical supplies. Another box contained 2 I.V. pumps and a backpack. My bedroom is turning into a mini pharmacy!

The nurse spent an hour or so going over everything I need to do to administer William's I.V. nutrition each night. It is fairly simple and straightforward, but I'm not yet to the point of doing it without constantly double checking myself. Needless to say, it takes me considerable time to get it all done and I have to make a daily chart to keep track of what time I give each medicine, must remove things from the refrigerator, give shots, start preparing fluids, administer numbing creams.... I'm tired just thinking about it. Tonight I managed to use 13 alcohol pads for all the various sterilizing of caps and syringes and shot sites. And all that while trying to make sure William is constantly eating and drinking.

Last night I slept through my 1 AM alarm again to give William his Zofran (for nausea). I woke up at 4 AM and gave it to him. He woke at 7 AM and said he didn't feel good and gave me enough time to reach over him and grab the pink bucket. Oh, how I love the pink bucket. I got up and gave him his other nausea medication for added relief and then started packing our suitcase again for our clinic visit this morning. His counts were low, but fine and no transfusions needed yet.

I hate living like William may be readmitted to the hospital at any moment. I am amazed William has not been readmitted to the hospital again this week with a fever, but am counting the blessing he hasn't. We head back to the hospital tomorrow morning for another CBC (blood count) and then wait anxiously to hear back from UCSF. It's funny how much better it feels to check into the hospital when it is planned.

I can't wait until Tuesday. By Tuesday, the harvest will hopefully have happened, William and I will be back home, Ryan and the boys will all be back too and we will all finally be together as a family for the first time in 6 weeks. It may be crazy and loud---correction, it WILL be crazy and loud---but also wonderful and our house will feel more like home.

Thursday, July 29, 2010

Trying to Move Forward

We came home yesterday afternoon! I am exhausted and William is happy to be home. We are still waiting for whatever confusion is happening with the home health nursing to come and teach me how to set up the I.V. nutrition, but at least we don't have to sit in the hospital to wait on them.

We went to the Drive-In movies last night as promised and because we don't know when he may land back in the hospital this week. That's why a post wasn't made last night! William had a great time. I just love those moments when I can hold him and let him be like a normal little boy and forget, if for just a moment, our reality. We did, however, travel with meds and his shot and took care of that right before the movie started.

The bone marrow harvest is still on, but pending his blood counts. We will be back at the hospital Friday, Saturday, and Sunday to have blood drawn, etc. We should know by Sat. afternoon if the harvest is a go or not. We hope and pray that it happens and we can keep moving forward.

Tuesday, July 27, 2010

Tedious Days---Part of Journey

Some days feel like I'm stuck in the movie, "Groundhog Day". I keep waking up in the hospital. One day I will wake up and this will all feel like a dream. Oh so I keep being told.

William was reunited with the other William today and they are roommates. They were so excited to see each other and William K. is so cute and full of energy. It was good to try to get some of that to rub off on William. William has perked up a bit today after getting the I.V. fluids and a few more nausea drugs. He has managed to eat a bit today and keep it all down. Funny how a little food can affect one's mood! The nurse just started his I.V. nutrition and it will run for 12 hours. Hopefully we'll be homeward bound after that.

The hospital is working on getting a home health nurse set up to come teach me how to administer the I.V. and possibly come in to the home for the first few days. I've been a little frustrated and annoyed with the pharmacy company and their constant mind changing over the whole issue of letting me take William home on an I.V. when both the doctors and I are completely comfortable with letting me do this on my own. I found out in the end that the current pharmacy that has our medical supply delivery account couldn't provide a pediatric home health nurse in Folsom and was reluctant to lose our account and was trying to make us stay in the hospital so they could provide the nutrition prescription. Are you kidding me? Maybe I misunderstood something, but the pharmacy rep who kept calling me to arrange teaching and such finally called and canceled our arrangements and apologized for not being able to keep our account, feeling she should turn us over to another company who could provide what we needed. She was nice, but she seemed upset as if our relationship went back to our childhood.

William spent much of the day building his new Lego Space Police Hyperspeed Pursuit set that he received from Little Wishes organization here at the hospital. He loves it and wanted me to post a picture of it but I don't have a camera with me this time.

Sometimes this blog is therapeutic for me to help process things. Sometimes it feels tedious and boring because I rehash the day with little introspection. Today it feels boring because I'm tired. But at the same time, I want a record of this for our family. I'll be curious one day what my younger boys will remember of this summer and the coming months. Will they be surprised one day to realize that the super fun summer they spent on non-stop vacation with their grandparents and cousins and aunts and uncles was because their older brother was battling a courageous war with cancer?

Monday, July 26, 2010

Tender Mercies

Today has been quite a day. Thank goodness I took the time to take a shower!

As I was gathering our things to load into the car for William's morning clinic visit (suitcase-cause we never know, blanket-Will's always cold, cancer notebook-don't leave home without it, laptop-my link to the outside world, etc.), I found a flooded laundry room. Yeah! Just what I wanted to do while trying to get out the door. I sopped up all the water up and moved the washer and dryer to clean underneath them (that did feel a little good to have clean). Then I had to wake up William to get him in the car. The poor guy is wiped out from the chemo, has to wake every four hours in the night to take his nausea medication, and he still throws up every time he eats solids.

At his clinic visit he weighed in at 51 lbs, four pounds less than exactly one week ago. Right before diagnosis he weighed 64 lbs. How's that for an unintentional starvation diet? Highly NOT recommended. The doctors didn't want him to lose more than 10% of his body weight. He's teetering around 20%. Hmm, if I could lose 20% of my body weight...? Yikes, and I have more to give than he does/did. At the clinic, we earned ourselves a couple extra hours of hanging out to get I.V. fluids to increase some of his numbers for magnesium, potassium, etc. and general hydration. The doctors wanted to send him home on I.V. nutrition, but the pharmacist said he must be admitted. So the doctors said, "Let's wait since he'll probably be admitted in the next couple of days with a fever and neutropenia." Do I cheer for that? So William vomited and we earned admittance. Up to the 6th floor once again.

William will receive I.V. nutrition through his Broviac throughout the night so he will sleep through any nausea. Pretty slick, huh? If he tolerates it, we will hopefully be discharged tomorrow and Home Health will come and get us set up at home to give him feedings during the night. These are some of the little things for which I am grateful to my twin sister, Christine, for exposing me to so I don't need to fear. And to a mother who courageously and tirelessly cares for her daughter's many, never-ending medical conditions, I can draw needed strength. Throughout much of this trial I have often recognized small, seemingly insignificant things that have happened in my life that have prepared me and my family for some of the difficulties and life adjustments we are experiencing. Sometimes things are said to me or emailed or written in notes that lighten some burden if only for a needed moment. I refer to these as tender mercies. The prophet Nephi said, "I, Nephi, will show unto you that the tender mercies of the Lord are over all those whom he has chosen, because of their faith, to make them mighty even unto the power of deliverance." (1 Nephi 1:20) I know my family and I are loved by the Lord and I know he is aware of our joys and heartaches and because of our faith we can become stronger and He will bless us in ways we perhaps can't understand or appreciate until we pass through this test.

We are glad to be in the hospital tonight because it means William can get a needed boost to his weight gaining attempts. William is keeping what little food he's consumed down and is enjoying the pleasures/slumbers of Benedryl. Can I have some of that? We had hopes to be here only one night, but were just told they were unable to prepare his I.V. nutrition in time and will have to wait until tomorrow night to receive it. So we're here another day and night, but for now we have a room to ourselves and I consider that a tender mercy!

Sunday, July 25, 2010

Have Bucket. Will Travel.

Just when we were settling into the joys of being home, we were off to the hospital again today.

Last night I noticed William's breathing was a bit labored at times, but it didn't seem too bad and I attributed it to his lack of energy and strength. He slept with me and I set my alarm to give him his Zofran every four hours. He slept fine. This morning we took things slowly and tried to ease in the food. William asked for a second bowl of Cheerios so I thought things were going well. Then William stopped eating saying he was full and it was too hard to breathe and eat. I had noticed his breathing again, but when he acknowledged it, I knew I should probably considered it a bit more seriously. How can you brush off breathing?

I called the doctor around 11:30 AM and he asked us to come in for blood work and x-rays to make sure we weren't missing something that might be going on. Ahhh, okay. I got dressed and quickly drew a bath for William because he'd been in the hospital all week without one and I had no idea how long we'd be at the hospital again. I know, breathing vs. bath? Sometimes stress and motherly standards do funny things!

We loaded in the car and I ran back into the house to do a final sweep to see if I forgot something. The pink bucket! I grabbed the bucket and we were off. William wasn't feeling too good. Ten minutes into the drive while traveling on the freeway, William started throwing up again. Thank you, pink bucket! I debated whether to stop or just keep going. He was coping so I kept going. The car stunk! Oh well.

At the hospital they drew blood for his regular various counts (CBC). Most things were good, a few marginal, and a few abnormal, but possibly explainable. No need for any transfusions, blood oxygen levels acceptable, white blood cell count high, but likely due to the shots he's receiving to prepare for the harvest, no fever to signal an infection, and shallow breathing in the lower right lung lobe. Chest x-rays were taken and looked clean. Since his vomiting was manageable, his immune system was still functioning and he is scheduled for a clinic visit in the morning, they sent us home after 4 hours.

We were doing the happy dance!

The happy dance stopped when the red flashing lights showed up in my rear view mirror. I told William to hold the bucket tightly and look really sick. (Not to hard for a really skinny, bald kid who's been throwing up anyway). I checked and double checked my speedometer and was incredulous that I'd be pulled over for going 3 miles per hour over the speed limit. The officer walked up to William's window and announced he was pulling me over for a safety concern. Really? It was my cracked windshield that I refrained from telling him has been that way for possibly 4 years. The crack is a rainbow arc along the bottom 6 inches of the driver's side. I asked if it was considered a hazard for my line of sight since it obviously isn't. He said my windshield was at a greater risk for shattering in the high heat of the summer. Oh my. There have been some hot, hot summers here and this year is not one of them. Wouldn't it have happened by now? And how in the world did he see it while traveling on the freeway? It must have been a slow Sunday. He gave me a "fix it" ticket (no cost involved, whew) and said that he normally gives drivers 48 hours to get it fixed and signed off by a police officer, but he'd give me until October. Thanks. Just what I need, another project and expense to juggle while cleaning up vomit and running to and from the hospital.

The upside was a happy teaching moment to show my son that I wasn't breaking the law by speeding. However, the smart little boy that he is said, "If the speed limit is 65 mph and you were going 68 mph and you didn't get a ticket because that's not really speeding, why do we even have speed limits?" How do you teach about the gray areas?

William threw up again after we returned home as he attempted to eat again. I felt so bad because he was saying how hungry he was feeling (He hasn't said that for a week). We waited, did the Zofran thing again, waited and pushed the Gatorade. He's kept it down and now he sleeps.

Now it's my turn to sleep.

Saturday, July 24, 2010

A Few Surprises---Some Good, Some Not So Good

One of the nurses told us that sometimes the Cisplatin, the highly nauseating chemo drug William just received, can have a cumulative effect. William did so well in the hospital, I was afraid of that. Of course, he didn't really eat anything in the hospital and received all fluids via his I.V. He's managed to throw up 3 times today---basically everything he's had today. I called his doctor and he increased the frequency which I can give William his Zofran. Last night we didn't wake William to give him his Zofran, and he threw up shortly after he woke up. Tonight I'll be setting my alarm to give him his meds throughout the night. This is when I wish we were in the hospital and a nurse could take over the night shift.

William has been pretty tired today, but has had a few semi-perky moments. He enjoyed playing Wii with James for a bit tonight and James did a great job encouraging William to eat a piece of pizza. William succeeded in eating one piece over the course of an hour or so. And oh, how quickly it can come back up.

The other excitement of the day came when we discovered 2 watermelons growing in our garden. I am growing the watermelons on a trellis and they are just hanging there. It's a beautiful sight! I'll be putting a pair of my old nylons to good use by creating a little sling for them.

Ryan left for San Diego today to meet up with his parents and our children for his family's reunion. So I'm on my own with William. We are planning to have some fun this week if we can manage to stay out of the hospital. So we'll try to start cramming things in early in the week. But given his energy and appetite, the fun may be along the lines of Redbox rentals and maybe another drive-in movie. We typically land back in the hospital by Wednesday. I have our suitcase for the hospital repacked already since I won't have the luxury of sending Ryan home to get what I forgot.

Ryan and the boys are so happy to be together! Ryan reports the boys are quite tan and have turned into little fishes from their swimming lessons. Even Soren just jumps in the water and swims. We are all getting very anxious to finally be together as a family! A quiet house still makes me nervous!

Friday, July 23, 2010

Half Way Done---kinda

William is officially halfway through his initial 6 rounds of chemo! Big hoorah! But he couldn't be more tired. Or at least I can't imagine how much more tired he could be.

Looking and caring for William the past two days made me really feel like I am the mom of a child with cancer. I know that sounds weird given what we've all been doing the past 2 months. I guess what I mean is I felt today what I previously imagined the parents of cancer patients feel like in Lifetime movies or St. Jude's commercials. William has tolerated his treatments reasonably well with not too many ill side effects up to this point. And even this cycle has gone well considering the nausea has been managed with medication. However, the past couple days William has been barely strong enough to get out of bed and go to the bathroom. He has slept well into the afternoon, his pale and frail little body curled up and his arms often wrapped around his head. I sit and watch him, sometimes holding his hand. He lays there with his eyes closed, sometimes asleep and sometimes awake, just too tired to open his eyes or move. There was nothing I could do but just stay near him, anxiously waiting for him to need me.

The doctor decided to keep him longer at the hospital to give him additional fluids to keep him hydrated and to continue to flush the chemo out of his body. We also had to wait for him to wake up enough to eat and drink and then keep it all down. He finally perked up around 2 PM and I convinced him to take a walk to the playroom. By 4 PM he was eating a bowl of Crispix and talking (always a sign this little guy is feeling better)! The nurse in charge of discharge said it was up to us if I felt comfortable taking him home, (I always do) but wanted to wait a couple hours to make sure he tolerated the food. We had a nervous moment as William started feeling a little queasy, but we gave him some more Zofran and he was okay. We had our marching orders at 7 PM and we hurried out! (Of course I was all packed and ready to go before we had the official okay!)

We are SO HAPPY to be home. We are thoroughly exhausted and can't wait to get some much needed sleep. So please don't call us in the morning!

Thursday, July 22, 2010

Famous and Waiting

William's famous! He was on TV today. One of the Child Life specialists stopped by the room around 10 AM to see if William would like to come to the playroom because 2 NBA basketball players were coming to visit. William was barely waking up and feeling very tired, but that was enough to lure him out of bed.

Matt Barnes, 6' 8", who recently became a free agent from the Orlando Magic, and Hassan Whiteside, 7' 0", a rookie with the Sacramento Kings and no.33 draft pick, (I Googled), came to visit some of the sick kids. Matt Barnes grew up in the Sacramento area and founded the Athletes vs. Cancer foundation last year in memory of his mother who lost her battle with cancer. He is hosting a golf tournament to raise money for cancer research this weekend. KCRA 3 featured the visit and William even had a close up. There are perks with being the only bald kid in the room!!! I tried to find a link, but the website only seems to have the link to Barnes' plug for the golf tournament. So those of you in the Sacramento area, maybe it will be on the 11 PM news too or KQCA my58 at 10PM.
Hassan Whiteside 7 '0" & William Murdock 4' 6"
BTW, his dad was 6' 4" and his mom was 5' 10".
Folks, we may have some Murdock whoppers one day! (Ryan is 6'4" and I'm 5' 11")

Matt Barnes, 6' 8"
Note his head height on the cupboards behind him compared to Hassan.

William continues to be very tired and not want to eat. Like yesterday, he's only had sips of water. Boy, we're going to have some making up to do in the calorie department this weekend. He will receive his last chemo drug this evening and the post hydration throughout the night. We are hoping to be discharged by lunch time tomorrow if all goes well!

The preliminary bone marrow aspiration results came back today. His marrow is still not clear of cancer cells, but it is under 10%. Additional tests are still being done to determine exactly how much is still infected. The good news is that UCSF wants to continue with the schedule for harvest. They feel the number is small enough that the current chemo cycle may kill the remaining cells. Also, as I understand it, if the numbers are small enough, they are able to still harvest the cells and separate out the infected cells to insure a clean harvest sample. Medical knowledge and ability never ceases to amaze me.

Recently, I was going through some of the cards we have received and I have been carrying one with me in my purse the past couple weeks that has brought me strength and comfort. It is from dear friends who went through a trying battle with brain cancer with their teenage son several years ago. (Thanks P&C for your words of comfort!) They included a card with this scripture and saying:

"...Be of good courage and he shall strengthen thine heart..." Psalms 27:14
"Do not look forward to what might happen tomorrow; the same Everlasting Father who cares for you today will take care of you tomorrow and everyday. Either He will shield you from suffering or He will give you unfailing strength to bear it. Be at peace then and put aside all anxious thoughts and imaginations."

I looked up the scripture to see what the rest of it said. It reads:
"Wait on the Lord: be of good courage and he shall strengthen thine heart; wait, I say, on the Lord." Psalms 27:14
I was struck by the repetition of the counsel to wait. Today I was slightly frustrated that the biopsy results were not perfect. We have been waiting and praying and hoping. We have been gaining courage and strength and optimism. And now we must once again continue to wait. I'm grateful the progress is forward and not backward. Sometimes I wish the progress was faster (I am a sprinter, not a distance runner), but I know refinement takes time. The best things in life take time, hard work, and are worth waiting for, like: homemade bread, a clean house, finding the perfect spouse, physical fitness, raising children, a dream vacation, retirement, butterflies, and healing your child with cancer.

Right now I'm going to take a deep breath and wait.

Wednesday, July 21, 2010

Guitar Lessons

We've settled in to the hospital routine as much as one can. I slept well enough to feel refreshed. Well, let's not kid ourselves. I slept well enough to function.

William, on the other hand, slept and slept and slept. He has to get up through the night to pee to make sure he is flushing the chemo out of his body. This morning he was stirring a bit and he needed to swallow some medications. I tried to wake him a bit and he grumpily replied, "I had a rough night." I let him go back to sleep and gave up my quest to get food/calories in him today. The nurse reminded me that the Cisplatin he's on makes kids feel really sick, like the flu. Who likes eating when they have the flu? He eventually woke up around 2pm, but food was not in the plan today. I let my anxieties about his weight take a break.

William received a great treat this afternoon. Our friend, Wyatt, a very cool "teenager" as William puts it, came and gave him a guitar lesson. William loved it. William even had doctor permission to leave the floor and go outside. So we all headed outside and sat on a bench in the shade. Wyatt pulled out the cutest kid-sized guitar that was just the right size for William. After learning and practicing a few basic chords, William got tired so we headed back in and he got very excited to play games on Wyatt's iphone. Boys and technology...After Wyatt left, one of the Child Life guys came in with a Wii remote and William suddenly remembered it was Wonderful Wii Wednesday in the playroom with the other kids. William was exhausted, but couldn't pass that up. I know chemo gets progressively physically exhausting and I was reminded of that today as William was too tired to even play Wii while sitting down. He put his head on my shoulder to rest while bowling. We headed back to the room where he climbed back into bed and closed his eyes, but still listened to the conversations. When Ryan arrived from work, he came bearing McDonald's fries. William's nose is ultra-sensitive and dislikes the smells of everything. Almost. The exception is fries. As soon as Ryan opened the bag, William opened his eyes and perked up and said, "Those fries smell so good!" He ate 3 fries, closed his eyes and he was asleep.

The results from his CT scan show that the tumor has decreased in size 30-40%. We'll take it. It is responding and that is after only 2 cycles. The surgeon will try to remove the tumor after cycle 5. We're half way through cycle 3. I talked to Dr. Lee this time and he said it was within the round of normal and expected. Of course we would all like to see more of it gone, but the reality is still good. Patience and faith are always tested and strengthened together. We are praying and anxiously hoping to receive the results from the bone marrow biopsy tomorrow.

Tuesday, July 20, 2010

Upsides and Bragging Rights

Today was good. I fired up the grill at 7:30 AM and threw on a tri-tip. Obviously, I'm not a vegetarian. I tried it once for about a month when I lived in France with a girl who is vegetarian. I gave up because I just missed meat too much! Long live the the carnivore--but only in moderation, right?!

William ate today! We celebrate the simple things in life, like food and fresh air. Unfortunately the fresh air was a no-can-do. Otherwise, William is managing his nausea by managing to tell us he feels sick before he feels like throwing up. That's always a good thing! Perhaps I could weave in some life lessons on communication skills using that as an analogy?

We discovered the upside of being in the hospital this week: FIREWORKS! No, we did not smuggle in left over sparklers. The California State Fair is going on and we are only a few miles from the fairgrounds (as a crow flies) and since we're on the sixth floor we have a fabulous view. I guess it's a good enough excuse to let William stay up way past his bed time every night. What's there to wake up to anyway? A luscious breakfast and pressing social engagements? Nope.

For the past 26 days we have terribly missed being together as a whole family. We are thankful beyond the kindest and most loving words and sentiments to our parents for caring for our other 4 sons. They have been nurtured and entertained far better than we could have done over the past several weeks. Although I believe I have the best 5 sons on earth, they can be a handful---especially when just less than 5 years separates the oldest from the youngest. No, for those who have not met us, I am not crazy (well, that's probably debatable), but I did sneak in a set of twins. Feel free to imagine the noise levels that can be reached when simultaneous meltdowns occur. Here's to lots of gold stars on the foreheads of the very brave grandparents! Thank you! Thank you! We love you dearly! And a huge thank you to my sisters, Angela and Natalie, and my brother, Matt, who also provided plenty of entertainment!

And to my boys: We love you and are counting down the days to squeeze you and snuggle you and smother you with kisses! We can't wait to be together again and make our house feel like a home again. 14 more days and counting....

We've received regular updates about the boys and want to share some funny and sweet things we heard about the boys. This is the part where I can brag about my boys because it's my blog!

1. One night my parents were reading the scriptures with the boys and were talking about Satan/the devil. My parents asked them if they knew who he was and one of the twins replied, "Yeah, he's Jesus' brother who turned bad."

2. One Sunday afternoon, my Dad decided to take the boys out on a hike/adventure so they could let out some energy while my mom made dinner. He drove them up Emigration Canyon to part of the original pioneer trail. They got out of the car and hiked a bit on the trail while my dad talked to them about their many ancestors that walked on that trail. The conversation continued and my dad gave them a vocabulary lesson on ancestors and descendants. Upon arriving home, they ran in the house to announce to my mother that she was their ancestor and they were her descendants!

3. During that same excursion, they wanted to pick a bunch of wild flowers to take back to Grandma. My dad was trying to tell them to turn around and pick a bunch of purple flowers that were about 6 inches behind them. They kept getting confused and couldn't see them. Getting frustrated, my dad told them the flowers were right in front of their nose and if they didn't hurry, the flowers would jump out and bite them. The boys jumped back, afraid the flowers would bite and refused to pick any more purple flowers!

4. Whenever my parents took the boys out to the park, zoo, store, movies...people would often stop and comment, "Wow, are there 4 boys?" The boys would all quickly respond, "No, there are five. The oldest is in the hospital." (I'm so glad they miss and still remember their brother.)

5. Ryan's cousin was married on Monday (Congratulations Stacy!). Ryan's parents picked up the boys to attend the family dinner. Evidently, Clark, 6, ate 2 full plates of food, lots of soda, and 4 desserts. The other boys also had enormous appetites too. Ryan's mother commented, "The boys sure know their way around the buffet table." Their father is very proud!

Monday, July 19, 2010

Cocktails and Steak

Good thing I felt recharged yesterday because the hospital is sucking it all right out of me. I think I previously posted a comment William made, but if I didn't I thought about it, about being puzzled why he always feels sick in the hospital and feels good at home. That's how I feel today. Sick, Sick, Sick of the hospital. It is all too familiar.

This morning began with the clinic and his blood counts were fine. Then I asked more about this chemo cycle and the timing of things as far as counts dropping, recovery, nausea periods, and the harvest. I found out that this chemo cocktail typically takes longer for the blood counts to hit their nadir (low point) and longer to recover. And the next cycle can't start until his counts reach a certain number. So then I started worrying about the timing of the harvest and when my boys all come back and how that fits in with school starting on Aug 9th (so crazy), and his next cycle and scheduling my brother to come help.... So I gave up trying to ask any more probing questions because the answers were the same: we don't know and every child is different. Thanks.

His biopsy went well other than having to wait for 2 hours for our turn. William is eating moderately well. I guess it helps to be fasting until 3pm. But he is still turning his nose up at the hospital food and is requesting I bring back steak tomorrow morning. So I'll be grilling again early tomorrow morning

Round 3 is a new cocktail. His infusion schedule is different than I understood (I'm still learning). Unlike his last 2 cycles, which had chemo on a continuous drip for 72 hours, he receives one new drug for 2 hours, then another new one for 1 hour, then a diuretic and post hydration (extra fluids) for 6 hours, then he's done until the same start time the next day. So that will be a nice change, but he'll still be hooked up to the I.V. for fluids the whole time. The diuretic medication and extra fluids help flush his kidneys so he has to get out of bed quite often--even throughout the night.

When we were brought up to the floor after his biopsy, we discovered that we were in a sharing room. Not my favorite, but I can't be too picky. However, this time it was the quad room-two sharing rooms joined by a large doorway with no door! Oh the joys of sharing with 4 patients. The bathroom was in the other room and the other room was housing a toddler that the nurse said was having temper tantrums all day long. I immediately thought, "If William is going to be nauseated, I'm going to be running into the other room, disrupting them, just to empty and clean the bucket"--among other thoughts. So I hurried and went downstairs to the 5th floor where my friend and veteran hospital mom was with her daughter and got a quick pep talk that I could go ruffle some feathers and request another room. I did. They were full. But a couple hours later they came back and said a child was going home and we could move. Hooray! We are still sharing the room, but the boy and his mother are very nice, he and William get along great, and they are lucky enough to only be here for 1 day.

Today I had weird thoughts that we have bad news looming ahead of us because this past week felt so good. I quickly tried to push that thought away because it brings tears and I have no supporting evidence for it. I know that our family won't be given more than we can handle and we've come a long way in 7 weeks. There are a lot of families that are a lot worse off than us with jobs, finances, insurance, travel distance, support systems. We are very blessed that we have so much support in our lives. And with that reminder, we can handle this week in the hospital and eat steak.

Sunday, July 18, 2010


We feel recharged both physically and emotionally. That sounds funny as I type it because we still feel physically exhausted and our emotions are always close to the surface. But William has had a great week and we've spent some quality time with him and have called it his summer vacation. We are recharged because we made great memories!

It's been a week for the record books: 7 consecutive days at home! But the record stops there and we check into the hospital Monday morning. The day will begin with a clinic visit to check his blood counts. That should be routine and without surprises. He will then be admitted to the hospital for a bone marrow aspiration. We are praying and crossing our fingers that the results will show his bone marrow clean from cancer cells and ready for harvest. Then he'll head up to his room where the routine urine test start to make sure his body (kidneys) are functioning well enough to handle the next round of chemo. Again, routine and hopefully without surprises. Then the chemo signs will go up on his door, the nurse in her sterile get-up will enter, and the infusion will begin. It's rather anti-climatic other than the weird sense that we are under-dressed watching the nurse sporting a outfit that makes us think she's dealing with nuclear or toxic waste. I guess it is pretty toxic stuff. And then we will sit and wait for 96 for the infusions to finish.

I mentioned in a previous post that this round of chemo is a new cocktail and particularly nauseating. So we feel a bit more anxious about William's physical response this time. Hopefully the anti-nausea drugs will do the trick, but it's one of those things that can be completely different for each person. We'll be keeping a vomit tally just for fun. Besides, keeping track of any sort of record output always makes for a good laugh from an 8 year old! Up to this point, the count is 3.

On Friday evening we took William to the Bodies Revealed exhibit downtown. It was fascinating and William loved it. We spent nearly two hours looking and reading and talking about the bodies. The most interesting part was using the exhibit as a way to explain the location of his tumor and how it is affecting other organs in his body. William got to hold a real liver and stomach. We also studied the anatomy of the heart and explained how his Broviac (central chest line) is threaded through certain heart vessels and how his aorta is surrounded by the tumor.

Saturday was spent running errands and having lunch at The Old Spaghetti Factory---William's favorite. He made a valiant attempt at eating his meal, but we still came home with a doggy bag. We also had the opportunity to go to another hospital and meet a family from our church whose 7 month old daughter was just diagnosed last week with neuroblastoma too. It brought back all sorts of emotions that we have felt along this journey--some that we still experience on a daily basis. Talking with them was therapeutic, comforting, and strengthening. We feel so new to this whole cancer world, but being with them made us realize some of our progress and milestones. We feel strengthened and blessed to know that we are not alone in this trial. It is ironic that adversity has brought us together as new friends, but we are grateful for those simple little things that we feel the Lord has given us to help lighten both our loads.

Today also had some recharging moments, but I'm so tired right now, I'll share those tomorrow and go recharge with some sleep first!

Friday, July 16, 2010

Life is a Rollercoaster...

And sometimes I just want to get off because I'm feeling sick.

Yesterday had highlights and lowlights and I was exhausted. The morning started at 7:15 AM heading to the hospital in rush hour traffic for a CT scan, Echocardiagram, and clinic visit. William was fasting for the CT scan. We arrived at the Radiology check-in on time and were then told that the CT scanner was down and we would have to go to another hospital. Thankfully it was only about 30 blocks away, but again, it was rush hour and downtown. When we arrived, parking was a breeze thanks to our new handicap placard! (the little joys in life!) But, by the time we got there, we were already starting to run late for our day of appointments scheduled back to back and I had a little boy who was throwing a fit about the contrast dye he was having to drink. The staff at Sutter General was amazing. Really amazing! They got on the phone with Sutter Memorial and tried to figure out possible scenarios for rescheduling our appointments (not wanting William to fast longer than needful), ran around trying to juggle their schedule to get William in ASAP and eventually ended up freeing up another scanner. During William's fit, they brought out the supervisor, Tim, to assure me they would get William in and helped me coax William through the drinking and tell him stories. A nurse also came and sat with us and tried to distract William with a funny game. Usually after drinking the dye, you have to wait 45 min. It took William nearly 20 minutes to drink it, we waited 5 more and they whisked him in for his scan since we had to hurry back to the other hospital for the ECHO and clinic appt. They even promised to have the scan results sent over to our oncologists within 2 hours so we could possibly see the results before we left the office.

The significance of the CT scan was to see how significantly the tumor has shrunk. The Echocardiagram was to observe his heart function. His chemo can affect his heart function long term and it will be monitored closely throughout treatment and then continue throughout his life. We have been anxious to see how the tumor has responded. The doctors have seemed optimistic because they can no longer feel it from the outside.

As we were leaving the clinic, the the scan results arrived. Dr. Yim let us look over his shoulder as he took a first peek. I saw the original scan and new scan side by side. It is amazing how big the tumor was. The cross section view showed the tumor taking up more than half his abdomen. The new scan showed some significant shrinkage. I felt my spirits rise, desperately hoping to have something hopeful to boost our anxiety. Dr. Yim commented, "It is still quite large, but it has shrunk a little." I had no idea how to read into that. I responded, "But is this amount of shrinkage typical or within the range of expectation?" Dr. Yim is a brillant doctor, but a man of few words with a very heavy Asian accent. (maybe Korean?) He answered, "I would have liked for it to be smaller, but we'll talk more next week when we sit down for a formal discussion." My heart sank. It really sank. And I'm fighting off the emotions all over again just writing it down.

I know he hadn't studied the scans yet. I was seeing them as he did, but I heard his first impression. I left the office trying to hide the tears from William and frustrated. I'm frustrated that we never get any good results from the big tests. I just want some little nugget that I can cling to for some real hope---not something that I cling to because no one has an answer of whether that fact is a good indicator or bad indicator.

I suppose this is how real faith is tested and strengthened. I just wish it didn't have to be so hard and painful. But if it wasn't, how strong would any of us really be in the end? This all goes back to what I mentioned the other day about taking one day at a time. William is happy today and feels good. He takes one day at a time because he doesn't know how to take in the whole picture. I am grateful and draw strength from that. I need to take a step back and focus on each day as it comes. (I think I'll need that reminder over and over again!) But some days I also just need to empty out the tears and emotions so I have room in my brain and heart to just take deep breaths. Then I'll pick up the pieces and put them back together in some stronger formation so I can face whatever may lie ahead.

We are going to have a great weekend with William. He is feeling good, his counts are up, and it's the last weekend he'll be feeling good before all his brothers come home. Last night we kicked off the partying with a trip to the Drive In movies. William said last night, "This is the best night ever in my whole life!" I'm glad he's easy to please!

Wednesday, July 14, 2010

I've Learned to Post a Video!

Many of you have asked me how I can be so hopeful, positive, and optimistic. My usual response is, "Well, consider the alternative." But truthfully, I think a lot of my strength comes with how I view motherhood and my relationship with God in that role. I came across this video today and wanted to share it because I find strength and comfort from its message and hope you can too.

Tuesday, July 13, 2010

Picture Time

A picture is worth a 1000 words. Right?
Here's to saving some time.

William wanted to share his Bendaroos creation. It's an ice cream sundae.

Platelets. Looks like caramel.

Me and William
(for those of you I've never met, Hello! Now you have a face with a name.)

Nightly MarioKart racing with Daddy

And William only wanted to eat spaghetti noodles with butter. Weird. I'm not sure if I should admit Ryan and I inhaled that entire pizza. Does the fact it was thin crust make it any better? It was delicious and no, it was definitely not from the hospital!

Playing with fire is always fun!

William and his roommate, William, in the playroom for Wonderful Wii Wednesday!

Monday, July 12, 2010

More Oomph!

William hasn't been very interested in talking with us about cancer. We try to talk openly with him and explain what is going on, but it's always in terms he can understand. He does not associate cancer with death (for which we are grateful) and his primary concern remains his hair. Oh, and the fact that he won't be attending school this next year and won't be able to walk to and from school on his own. He had to wait until the 3rd grade and has been anxiously counting down since Kindergarten!

I was talking to Lisa this morning, mentioning that we had tried to talk with William the other night and he told us, "I don't want to talk about cancer." Lisa and her husband, Dan, a child psychologist, have been entrusted with the duty of making sure our mental health is intact (more or less) and that we are communicating with our children appropriately and not missing any red flags or warning signs due to our own stresses. Lisa reminded me to just make sure the communication lines remain open and suggested some ways to pose questions.

William woke up a while later and wanted to snuggle before coming down to eat. So I crawled in bed with him and we started to chat. I asked him what things make him happy. Then I asked him what things make him scared. He replied, "Big flies that sound like bees." Okay, duly noted. That's progress. I asked if cancer scares him and he said calmly, "No." I asked why he plays his DS when we go to the clinic and when he's getting ready for a procedure. I assumed it was a coping mechanism for his fear. He replied, "It's boring when the doctors talk to you. I listen when they talk to me, but you're boring." Okay. That works for me.

This week is our "good" week. It is the week he should be feeling more oomph because it's the last week before he gets hit with chemo again. It's a vicious cycle. He managed to eat today without needing any morphine. Yea! This means his painful mouth sores are healing. On Thursday he is scheduled for his first CT scan since the original ones before therapy began. The doctors can no longer feel the tumor when they feel his abdomen, so we are all anxious for what the scan reveals about the current size of the tumor.

For those of you who like specifics to pray for this week, pray:
1) the tumor is shrinking away from his aorta and major vessels in preparation for a successful removal surgery
2) he will continue to eat and gain some weight
3) his bone marrow will be free from cancer cells so the bone marrow harvest will happen.

The next couple weeks feel like big weeks: we'll get a better idea of how his body and the tumor are responding to chemo through scans and biopsies and we'll be hopefully crossing a major hurdle by harvesting his bone marrow. Things feel like there are going well right now as we take one day at a time. We focus on immediate needs and find joy in small things, i.e., snuggling, holding hands, finishing a shake, playing games together, doing Mad Libs, picking strawberries from the garden, watching our sunflower grow, piggyback rides, conversations about big flies. Perhaps there is a poignant life lesson in that. How much better would our lives be if we just focus on making today great? I can't control whether William wins or loses this battle, but I can make sure that he knows how much he is loved and how much happiness can be found in life right now.

I have heartache when I think about what still lies ahead (can be tied into life lesson discussed above). William still has some big hurdles to cross in the coming months. Talking to one of his oncologists Sunday morning, I was searching for some little nugget of good news to cling to. He didn't have bad new, just noted his current condition. I asked him if things looked particularly good because he's tolerated his aggressive chemo cocktails seemingly well. His response was a low-key, "Well, he's two for two." That basically told me, we gave him 2 cycles of chemo and he survived both. Again, I'm grateful. I wanted him to say he beat the odds and the rest of treatment should be smooth sailing, (I know that sounds unrealistic, but I think that was truly in my heart). I know he won't beat the odds until he makes it through his entire treatment and the tumor and cells are all gone.

When I feel exhausted about how our lives have been the past 2 months (almost), I have to muster a little extra oomph because we are just getting the beginning chunk under our belts. So I'll sign out for now and go to sleep and hopefully wake up with a little extra oomph for the tomorrow.

Status: Home for now

1) Home by 3pm on Sunday.

2) Received a platelet transfusion before discharge

3) More tired this cycle (as expected)

4) Will be readmitted next Monday morning for another bone marrow aspiration and the next round of chemo which will be a 96 hour continuous infusion instead of 72 hours. The new cocktail will also be much more nauseating! (my pink carpet says, "Bring it on!") He'll likely be in the hospital for 6 days minimum next week.

5) I'll post more later tonight. I promise! (Hubby's out of town anyway)

Sunday, July 11, 2010

Another Day, Another Discharge

For all you out there that may suffer from occasional anxiety when I don't post each night: deep breaths, in and out, one more time, now go find some chocolate! The guilt eats away at me, but then my head hits the pillow and it all slips away. Blogging is a responsibility I take seriously. If anything earth-shattering happens during the day, I will always post. Well, that depends on my exhaustion!

With that said, we are slated for discharge, hopefully early this afternoon. With Herculean effort, actually it's just counts on the rise and a blood transfusion, William fought off all fevers and met the criteria to head home! (Little happy dance!) His CBC (blood count labs) came back this morning and he will need a platelet transfusion, but unlike the 3-4 hours it takes to get blood, platelets take 30-60 minutes. I'm excited to see the platelets since the nurse described them as looking like caramel/butterscotch. Ewww, right? I'll take a picture.

As mentioned above, William received a blood transfusion yesterday. Transfusions are a magic drug. Seriously. Talk about an upper! He was out of bed (literally stood on his bed trying to---I don't know what, but he stood on it) and very, very chatty. When his night nurse, Lisa, came on shift, she was laughing because he was such a different William than the night before. Per William's request (and his rising white blood cells), we finally got to walk past the glass isolation doors and take a long walk around the floor. He specifically wanted to see the kitchen and refrigerator. I know, the hospital is so exciting!

The other cause of excitement was visitors. Finally! And they came bearing Jamba Juice! Thanks Whites! What could be better than that? Oh, wait....they came with the knowledge to advance to the next levels of Lego Harry Potter on the DS. (Thanks Bishop White and the online world of video game walk-throughs!) William concluded his day with quite the MarioKart tournament with James. The two of them have been asking daily when they could play video games together again. And this has been going on for over a week. Oh, the torture (for boys and moms).

Hopefully the next post will come from the comforts of my own bed---unless I fall asleep first!

Saturday, July 10, 2010

Not Home Yet

I didn't blog last night because yesterday was boring, I was tired, and on the verge of grumpy. I have my days when the hospital feels a teeny, tiny bit like an escape because I can't worry about anything else in my life. No laundry, no errands, no cooking, no home improvement projects, no cleaning, nothing. I just focus on the needs of my son. But most days I just want to be at home with some sense of normalcy.

William is a happy, peaceful child by nature, but even good kids sometimes get unpleasant. So do good parents! And although William's immediate needs are fairly simple, everything takes a long time. To quote one of his best friends, James, "At the speed of William." William does not take after my speed or impulsiveness. He is very methodical, calculating, and thoughtful---more like his dad. Great qualities! He likes routine and is particular about certain processes. I cringed this past year when he begged for shoes with laces and I realized I had to give in to my 2nd grader who eventually needed to learn how to tie shoes. It just takes so long when I'm trying to pile 5 little barefoot boys in the car to go anywhere. Yes, they are usually barefoot and I toss the shoes in after them. It's called multi-tasking. I drive and they slip on their shoes. But William likes his shoes tied just so and he is rarely ready by our destination.

Back to how this relates in the hospital. William has very painful mouth and throat sores. A very common side effect to his chemo. They show up a few days after chemo ends and last about a week and are usually just finished healing when the next cycle of chemo begins. This creates a problem with eating. The one thing I focus on controlling! It is very painful and he cries and struggles to get anything down. He actually needs morphine to eat. However, morphine makes him nauseated when taken on an empty stomach. So here's our process for eating:
-40 minutes before eating he swishes with a solution of Maalox, Benadryl, and Xylocaine. This coats and numbs and lasts for about 30-45 minutes.
-10 minutes later, after it starts to take affect, I try get him to eat something small. This usually is more forced than voluntary and includes wincing and whining. (me and William)
-10 minutes later, I give him morphine which tastes bad so I have to have a drink immediately ready.
-20 minutes later, the morphine sets in and he is able to eat, but some pain remains and I must sit and coax each bite or sip.
2 out of his 3 meals are protein shakes right now. And each 10 oz. shake usually takes him over an hour to consume. I don't try to push him too hard, but we have to get it down before the meds wear off.

So for all you mathematicians out there, you've probably already done the math to figure out that each meal takes nearly 2 1/2 hours start to finish. Perhaps he takes after the Frenchy in me! hah!

William said to me yesterday: "It's weird, I always feel so sick at the hospital, but when I'm home I feel so good. "
Me: "Yeah, me too! The getaway car is ready. Let's break outta here!"
He smiled.

He had a blood draw this morning. (I managed to sleep through it. Awesome! I'm getting this hospital sleeping thing down.) I haven't received my copy of the labs yet so I can chart the trends with the last cycle. It's pathetic and diligent all wrapped up with a neat little bow! But the nurse did mention that his platelets were low and he would probably need a platelet transfusion. That's exciting! He hasn't had one of those yet. Now I need to look back at his platelet trends.

It's 9:30 AM now. William is still sound asleep. I'm starving, but trying not to dive into his breakfast that's been sitting on the counter for over an hour. It's the only meal that is almost 100% edible. He never eats it, but I feel guilty eating it without his rejection first. He needs his sleep, but right now we're looking at finishing our breakfast song and dance at noon if he sleeps much longer! And morphine needs a few hours between doses. But I'll let him sleep because I love him.

Thursday, July 8, 2010

Another Top 10 List

You know you've been at the hospital too long when...

1. You send the meal tray back into the hall without looking at it.
2. You can remember the nurses names without looking at their name tags.
3. You know the other patients by their first names.
4. You can sleep through the vitals checks in the middle of the night.
5. You have a precise routine for setting up the sleep chair.
6. You always wear shoes or socks when walking on the floor because you know how truly filthy it is.
7. You have a personalized juice and sprite cocktail.
8. You wash your hands every 20 minutes even when you're at home.
9. You feel guilty flushing the toilet without measuring outputs.
10. You look for the nurse button even when you're in your own bed.

We've been at the hospital too long!

William slept a good portion of the day. Good 'ole morphine. His ANC is still zero and his other blood counts are still dropping. He had another fever this evening which necessitates another blood draw for blood cultures. So that tacks on another 48 hours minimum to our stay. His blood cultures must be negative, blood counts must be on the rise, and no fevers for 24 hours in order to go home.

Wednesday, July 7, 2010

Our Kind of Slow Paced Day

Today was surprisingly slow paced. William slept until 10:30 AM and spent most of the day on the couch playing video games, sleeping, and hanging out with me. He had a bit of a fever last night, but not enough to admit him and the doctor said just to keep an eye on it. William was a little more tired today, but who could blame him? Playing the Wii can be a workout!!

I spent a few minutes in the garden picking basil to keep it from flowering. I typically cook with a lot of fresh basil, especially in the summer. But, I haven't been cooking much or for such a crowd lately. So I picked a bunch and made a bunch of pesto to freeze. Then I had the novel idea of actually cooking something nice for Ryan and me since leftovers are getting old. So I got out some french bread and tomatoes and started dreaming of bruschetta, pesto, homemade croutons, scalloped tomatoes, the cucumber from the garden....

I paused and took William's temperature: 100.8. I called the doctor, cleaned the kitchen, packed the suitcase and we headed off to the hospital. Again. But the pace was slow. I didn't stress because I know the drill all too well. William was sad to be admitted, but he also is all too familiar with the process and didn't put up much of a stink. Ryan picked up some take-out for us and William made a request for a cheeseburger. Not quite the meal I was salivating for, but perhaps in 48-72 hours.

We have a private room. WHOOOHOOO! It almost feels like a little vacation to have a private hospital room. Oh, what a sad commentary on our lives.

Here are a few comic relief William-isms of the day:

William and I were flipping the TV channels and I stopped to watch the last 15 minutes of a countdown of the most expensive Super Sweet Sixteen parties. It is seriously crazy what kids and parents do for these parties.

William: "Why did they just buy jewelry for that much money when they could have bought a house for the same price?"
Me: "Good question."
William: "Will you and Daddy do me a favor and save some money for my 16th birthday party? And can I invite more than 12 friends?"
Me: Trying not to laugh, "We'll see. You can have a party for sure, but it probably won't be like the one on TV."

William: "I'm sleepy."
Me: "I know. The morphine I gave you makes you sleepy."
William: "I like drugs that make me sleep because sometimes I just need a little rest."
Me: "Me too!"

Tuesday, July 6, 2010

10 Things We Learned Today

1. ANC is 0-Will has no ability to fight infection.

2. Bring a blanket to clinic visits because the air conditioning is cold and you may wait a while.

3. Being upset about losing a game to mom on Wii Play can spike a fever.

4. Due to the intense nature of Will's chemotherapy, the doctors expect him to have an unplanned hospital admittance between each chemo cycle. Oh joy! (If not, I guess I'm either a superhero mom or negligent.)

5. When he's neutropenic (now) even a low-grade fever (100) earns him hospital admission. Will typically runs a temp of 99.3-99.7 throughout the day. Yes, I check it often.

6. Very few pharmacies regularly stock the oral solution form of morphine.

7. Doctors must put the date on prescriptions.

8. Class 2 narcotics must have an original prescription slip. Faxes and phone calls don't cut it.

9. William gained 1kg (2.2lbs.) since last Monday (+/- his clothing and time of day).

10. Mom makes a mean milkshake (secret ingredient:half and half).

Monday, July 5, 2010

Thoughts on Freedom

I love the 4th of July! During the 1990s when Americana anything and everything was the big rage, I was all over it. I had flag t-shirts, sweatshirts, sweaters, skirts, Converse shoes (I still have those!), hats, swimsuits, shorts, hair accessories, earrings, bedding, I hung a giant flag in my college bedroom, and had keepsake boxes with flags on my dresser. I think I've painted an appropriate picture.

I didn't put up a single decoration this year. I managed to remember to hang our flag around 4 pm. I didn't even wear Red, White, and Blue clothing to church. I typically do at least that and I have some fabulous red high heels that I love. I totally spaced it.

But I did do something meaningful. I reflected on the blessings in my life that freedom has provided. Religious freedom was one of the founding principles of our country. I sat in church feeling very grateful to be able to worship God according to my beliefs. Those beliefs are the source of strength that I find myself drawing on each day as our family navigates through our sea of trials at the moment.

On the first Sunday of each month, members of the church in congregations throughout the world, join together in fasting by abstaining from food and drink for two consecutive meals for the purpose of drawing closer to God. Fasting is often done with a specific purpose in mind and accompanied by sincere prayer. Also, during the church service, people in the congregation have the opportunity to stand and share their testimony. Yesterday, I fasted for the health of my son, William, and strength to face adversity. I also shared a portion of my testimony and ways that it has been strengthened these past several weeks.

One benefit of blogging is the ability to organize and edit thoughts, so here are some thoughts and parts of my testimony that I would like to share.

Our family has been the recipient of countless prayers from people all over the world, many from people we don't even know. We are truly grateful and want to express our thanks. I believe in the power of prayer. I know that God hears and answers our prayers. I want to share with everyone that we have felt increased amounts of peace and comfort during some of our most difficult days. I know this is a result of your many prayers offered in our behalf.

I have also thought a great deal about faith and hope. I have faith that the Lord is aware of our family and that whatever we will have to face in our path, we can learn and grow from it. I hope that things will work out the way I want them to, but I have faith that whatever happens will be for our good. Faith is powerful and faith can work miracles. I know that we are all here on earth to learn and grow and because of Jesus Christ and his teachings, our family is eternal.

The past three days, William has been doing remarkably well. He has been more willing to eat, had no nausea, limited pain, and been quite talkative. Other than his balding head and skeletal frame, he seems almost like the old William. In fact, last night he commented, "I haven't got all my appetite back, but aren't you glad I got my talking back?" Ryan and I looked at each other and just laughed and agreed. William is a talker!

William was thrilled to buy Fireworks on Saturday and counted down until dark on Sunday. He had a blast watching and lighting fireworks. Yes, lighting. I don't know what kind of parents we have become! He was supposed to sit and just watch since his blood counts are dropping. But no, he was scrambling all over the street lighting fireworks, getting dirty, laughing and having a blast. Sometimes it just seems right to let him be a kid. And not having four other boys to follow his example probably made us ease up a bit.

William sees the doctor tomorrow and will get his blood tested. If this cycle is anything like the last one, he will already be neutropenic and at his nadir. (Do you all remember your "N" vocabulary lesson?) He may need a blood transfusion, but his coloring and energy level seem good, so I'm hoping that won't be the case. I just want to be in and out quickly for a change.

Saturday, July 3, 2010

Holding Pattern

Delayed. We got the call Friday afternoon that the bone marrow harvest won't happen until after the next cycle of chemo, pending all test results. So our lives continue as expected, unable to plan for anything. However, after the call, Ryan and I still couldn't resist whipping out our calendars and counting out days for the possibilities of when things will happen next cycle. The most frustrating aspect is that our boys are with their grandparents this month so we could get this crossed off our list and be able to keep a more sanitary environment in the process. The good thing is after counting out our days, with the delay, William will likely be admitted to UCSF about the same time the boys come home and Ryan's parents will be staying that week when they bring them home. So the cross-contamination thing shouldn't be an issue and we'll have help with the rest of the family without having to coordinate their care on a daily basis.

Our plans for the holiday weekend:
-Enjoy being home
-Do fireworks
-Play video games
-Stay out of the hospital
-Try to get some restful sleep

Friday, July 2, 2010

Pins and NEEDLES

We're HOME!

William finished his 2nd batch of chemo yesterday afternoon (Thurs.) and they let us go home without staying overnight since I felt comfortable managing his pain and nausea. So we bolted for the getaway car!

I feels sooooo good to be home. With Clark, Cameron, Nathan, and Soren not here, the house has been so quiet and lonely when Ryan or I have come home late at night. The house really feels more like a home with William back in it. We were all amazingly tired last night so we all crawled into our bed, snuggled, watched a couple of taped episodes of America's Got Talent, and ate homemade banana bread. We had some funny and tender conversations.

William: Wiggling in bed trying to get comfortable, asks, "Will you hold me?"
Me: "Of course. Are you in pain? Do you feel like throwing up?"
William: "No, I just love you so much!"
Me: My hearts starts melting and I squeeze him tighter.
William: "That hurts, Mom!"

William: "I think I'm really glad I got cancer."
Me: Puzzled, "Why?"
William: "Because now I have a DS and a Wii. You would have NEVER let me have those without cancer!"

We received the preliminary results from the bone marrow aspiration. The cancer cells in his marrow have dropped from 90% to 20%. Great news! The cancer seems to be responding to the treatment so far. His abdomen has shrunk and he is no longer taking any blood pressure medicine which means the tumor is putting less stress on the kidneys. He will have another CT scan, Echo-cardiogram, and EKG in a couple weeks to compare the tumor size and monitor his heart function.

Now for the continued roller coaster ride! William is scheduled for a bone marrow harvest July 12th. For this to occur, the bone marrow/stem cells must be free of cancer cells. While his aspiration showed great improvement, the number must be 0%. The tricky part is that the bone marrow aspiration was done before the 2nd round of chemo started in order to chart progress with each cycle. (He'll have one before the start of each round of chemo.) BUT, since the cells were so responsive the first round, there is a reasonable chance that the second round of chemo wiped out the rest so he could have clean bone marrow. BUT, due to the painful nature of an aspiration (think big hollow needle being pushed through each side of the pelvis and into the marrow), another one won't be done until right before we start round 3. So, the results have been sent to UCSF to make the final decisions. They could go ahead and do it, hoping it's clear--they'll test the stem cells they harvest for cancer presence and have to re-do it later if cancer is found. Or they could decide to wait until they know for sure and we'll shoot for after the 3 round of chemo. BUT, because it is another holiday weekend, we probably won't know until Tuesday! AHHHH! What is with our luck or lack of it with needing answers over holiday weekends? I wonder what test result we'll be waiting for over Labor Day weekend?

For now, we'll keep preparing for the harvest. I will give William daily shots (needles not drinks) of Neupogen which forces the stem cells out of the bone marrow and into his bloodstream. (Stem cells are only found in bone marrow). See Ryan's post on June 26th, Burgers, Shakes, and Bone Marrow for a harvest refresher. Isn't that amazing? The whole process is fascinating to me and that people come up with these things!