Thursday, February 24, 2011

Derby Day

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

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

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

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

With Lego guy

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

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

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

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

Saturday, February 19, 2011


William arrived home Friday night!

We are exhausted, but sooooo happy to be home.

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

Wednesday, February 16, 2011

Change of Plans

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

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

Tuesday, February 15, 2011

Day 13: Engraftment

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

What's engraftment?
  • It means the stem cells found their way back to the marrow space, attached themselves to the bone and replicated themselves enough to fill the space and then start to produce the daughter cells (white and red blood cells, platelets). Think of it like a factory (the bone marrow space). You have to spend time hiring employees (stem cells) to fill the factory. When you have enough employees you can start production on your product list (white and red blood cells, platelets). Over time, the employees become stronger and more efficient and can more easily negotiate production malfunctions (need for transfusions, infections).
Does this mean the transplant was a success?
  • Yes and no. This is great news that the stem cells are showing signs of production. However, the transplant won't be deemed successful for about a year or so. There are a lot of different cells involved (i.e. B and T cells) and these don't begin to recover for 3-6 months. Different cells fight off different things. Radiation treatment will also prevent some cells from recovering during that treatment period. William's immune system will be quite fragile for about a year and we will all live a life with varying precautions and restrictions during this time. Of course, these will ease up as time progresses.
When does he get to come home?
  • We are anticipating a Tuesday, the 22nd, discharge. It was to be Monday, but since it's a holiday.... (We have this thing with delayed discharges and/or delayed test results during Monday holidays!!!)
  • Coordination for home health to deliver medications and supplies and provide a nurse to do the I.V. pump orientation is a bit of a headache, but we're excited and beginning the countdown.
  • Let the serious house sanitizing process begin!
Checklist for Discharge
  • No pain meds---check. PCA (morphine button) removed today.
  • Zofran only administered as needed---check.
  • Other various medications discontinued---check.
  • ANC>500 for 3 consecutive days.
  • Eating and drinking. I.V. nutrition to be discontinued tomorrow and hopefully the appetite will return.
Thanks for all the letters, pictures, Valentines! He loves them and loves the daily mail delivery. We've taped all his cards on the window and it makes his room so cheery. I'll post a picture soon. Actually, I have several pictures to post if I can just get into a better routine of blogging before it's late and I'm exhausted.

Saturday, February 12, 2011

Head Shots

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

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

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

Wednesday, February 9, 2011


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

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

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

Tuesday, February 8, 2011

One for the Record Books

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

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

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

Monday, February 7, 2011

I Wanna Happy Button

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

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

Sunday, February 6, 2011

Plugging Along; Doing Well

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

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

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

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

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

Thursday, February 3, 2011

BMT Room Tour

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

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

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

William's quarters.

Any guesses?

William's view from bed.

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

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

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

Wednesday, February 2, 2011

More Tidbits on Bone Marrow

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

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

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

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

Tuesday, February 1, 2011

Book #7 Finished!

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