Tuesday, August 2, 2011

Isolation D-Day!

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

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

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

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

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

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


  1. Here's to finally having ALL the grandsons at visiting at grandma's and grandpa's house. Oh yes, and their parents! We've been having fun, but it is also exhausting. If we could just play and read and ride bikes, and not have to cook and do laundry. Today Clark, the twins and cousin Isaac went to the park and played miniature golf and rode the rides with grandpa while Andrew and Soren stayed at home to play marbleworks. We also had a visit from Larry and Romanie who haven't been in Idaho for several years. They were impressed with our 7 under seven. Fun times!

  2. Julie,

    I just told Charlie that William may be back to school and he jumped up and exclaimed "yeah! yeah! yeah!" I think that says it all : )

    Have a wonderful trip. Looking forward to seeing you all again!