Monday, August 29, 2011
Most patients. William is not most patients. Why do I forget? On the first day of school as we watched William walk back into school, I turned to Ryan and asked, "Did we ever get some sort of official clearance to go back to school?" We kind of shrugged and commented that we remembered discussing it on several occasions with doctors and nurses with the assumption that it was okay, but never received the golden ticket declaring isolation over. Most things are fairly anti-climatic and are only as exciting as we choose to make them. Think baby steps.
The doctors never called with the results and I just got busy with life to really care about the results. Is that a sad commentary on how many results we've waited for or what? The Type A in my personality is really beginning to suffer, but I can only control so much. See, I'm starting to learn. I figured the results are what they are, they would call me if there was a problem or surprise, and the results really don't change anything. Right? Wrong. Well, sort of.
On Friday morning, while running errands I thought I'd just make the quick call since it had been almost 4 weeks---just out of curiosity and for the sake of knowledge. The results: Function at 37%.
Nurse: We like to keep the kids in isolation until they are over 50%.
Me: (shock hitting. tears forming) But he already started school!?
Nurse: How long ago?
Me: Two weeks ago.
Nurse: (bless her understanding heart) Oh. (sympathetically) This is not a black and white matter and it is something that we are only recently running into with the antibody patients. The antibody seems to slow the recovery of the T cell function. We will want to re-test him in 2 months at his 9 month post-transplant mark.
Me: Okay. But we were planning to go to Disneyland next month too.
Nurse: Let me talk to the doctors again and I'll call you back. 37% is really close and it was almost a month ago.
Me: (deflated) He starts his last round of antibody on Monday.
I sat in the car and just cried. This was not the end of the world. This was not something horrible. This could be a lot worse. This was only a hiccup. But it was just a smack in the face again that we still can't make plans without the looming possibility that all could change at the last minute. In the hours that passed while the doctors discussed his T cell function, I decided we would still go to Disneyland regardless, but boogie boarding at the beach may be off the table. We'll see.
The verdict came back in our favor! Hooray! After studying some recent national studies, patients with function over 30% do fine off isolation. William can continue to go to school, but we still need to continue our vigilance in germ abatement. He is more susceptible to everything. Of particular worry will be any outbreaks of chickenpox or nasty viruses such as hand/mouth/foot disease which can be fairly common. Since he essentially has a brand new immune system, he is no longer vaccinated against anything. And he cannot be re-vaccinated until his function is higher. New vaccinations will be spread over a year or two. So please stay away from us if you think you are sick or have been exposed to sickness. Wouldn't we all be a little healthier if we just practiced this in general with everyone? I think my love affair with Clorox Wipes and hand sanitizer will be a long one.
In other news, my angel sister is holding down the fort this week while William and I hang out at UCSF. Last round. Whoo Hooo! The boys love it since her darling 18 month old daughter becomes their surrogate sister for the week. I wonder who is babysitting who?
Here's to one more week of antibody. May it be uneventful.
Wednesday, August 24, 2011
Part of me wants to put the sign back up because it kept the door-to-door salesmen at bay.
The trip to Idaho was amazing. Literally. It is amazing pleasant driving with one, self-sufficient, calm, quiet child whose bladder can hold it for astonishing stretches. Ryan and I joked that it felt like we were on a date because we were able to talk for hours uninterrupted. We stopped once for gas the whole way. It was incredible, truly incredible.
The boys loved Idaho and being able to play with cousins, pick raspberries, ride bikes, feed the ducks and eat all of Grandma's candy stashes and sodas. I orchestrated a doctor’s appointment with an Idaho Falls pediatrician and found a lab in our insurance network to run labs on Monday so William could be cleared to begin his next round of medication. All went smoothly, but I must admit I had mild anxiety that morning as I tried to anticipate anything that could possibly go wrong. The past year and a half we often we never knew when we would land back in the hospital at a moment’s notice for an undetermined period of time. I wonder when I will stop having these mild anxiety attacks surrounding William’s health? I jump when I see him put his head in his lap and sometimes it just means he's tired.
We enjoyed a quick trip through Yellowstone, the Tetons, and Jackson Hole. Ryan and I drove around Jackson Hole to find the place where he proposed only to find the meadow is now a large time-share condo complex. It is ironically called Love Ridge. Cheesy, I know! I think our kids could’ve cared less, but it was fun to reminisce for a moment.
A whirlwind describes our trip to Salt Lake. We spent 2 days and enjoyed being with grandparents and aunts and uncle. The highlights included swimming at the Tennis Club and watching Soren, 4, show up his brothers by being the first to jump off the high dive. That kid is fearless. I’m in trouble.
We enjoyed at quick walk through Temple Square and had quite a treat when we went into the Conference Center and got to sit in during the weekly practice of The Mormon Tabernacle Choir.
Isn't the Salt Lake Temple beautiful? Ryan and I were married in it. Ahhh.
We spent the last day in Park City at the Olympic Park riding the alpine slide and zip lines and watching the ski jumpers practice their jumps into the large swimming pool.
However, all was not pleasant. Foosball got a little heated on the first day we were there and William and Clark got to use their allowance money to pay for a broken window. I suppose a broken window is a rite of passage for most boys. At least Grandma comforted them by telling them that their uncles broke windows in that room multiple times.
The drive home was filled with whining and fighting. What did we expect? However, we managed to only stop once and make record time. Miracles do happen.
I’m not a terribly sentimental person. I sure some of you might gasp if I admit that sometimes I let my husband drop the kids off to school on their first day while on his way to work. But I’m changing with this whole ordeal and embracing the little things. Ryan and I escorted all four boys to their classes. It was awesome to see William greet his friends and see so many parents that have been so supportive and concerned for our family. I live in the best community. Really, the best! But I didn’t cry…until I went back to pick them all up after school. Seeing William on the playground and come out of his classroom with all the kids as if life was completely back to normal made the tears start.
William loves being back. He is exhausted, but I think that’s normal for most kids. I love this picture of William and James on the first day of school in Kindergarten. They have always been in the same class. Last year they weren’t going to be in the same class, but luckily we won’t count that year! Here they are on the first day of fourth grade. And they even have the same teacher they had in Kindergarten! I am grateful for the coincidence fairies!;)
All the boys love their teachers. The twins love being in the room next to Clark. Clark has the same teacher he had for 1st grade and said the best part of going back to school was seeing his teacher again. I love that. The boys are also excited to finally get to walk to school on their own. I love this picture.
A week with the boys back in school and no doctor appointments feels almost too good to be true. William has one more hospitalization. We check in at UCSF Monday and stay through Friday. It will be the last hospital stay! Yay! Yay! YAY! His treatment will officially be done in mid-October as the last round simply consists of an oral medication. He still has lots of appointments and such, but life is starting to normalize and we are crawling out of our hole. It feels so good to go places together as a family, see him socialize, and let so many of you who have prayed so often for him and been so supportive of our family see how great he is doing.
Thursday, August 11, 2011
Tuesday, August 2, 2011
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.