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.

10 comments:

  1. I was so happy to read this update and wish I could give William a germ-free high five for his super fast car! Julie, I think you have an impressive instinct for balancing William's health needs and his social-emotional needs. I'm glad he got to go to derby and see his success in person.
    What a great milestone, to have the transplant and the requisite month away from home done with. You all continue to be in our thoughts and prayers!
    Erin

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  2. congratualtions on winning the derby william!!

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  3. William-I LOVE you in you cub Scout Uniform! What a great picture. Your eyes tell me you are smiling even though I can't see your mouth under the mask. YEAH for the winner of the pinewood derby and the MBT race! YEAH for a mom and dad who are always thinking about what is best for you!
    XOXO Grandma M

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  4. Yay for William for winning, and yay for mom for having such a great idea! :) That is one GOOD-LOOKIN' car...and oviously a fast one too!

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  5. WOO-HOO!!! How exciting, William! I LOVE your car (and the Lego guy). Congrats! :-)

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  6. Julie.....it's Laci. Just got your card and my heart is breaking!! What a beautiful family you have and what a HUGE trial you are facing!! Please know we will be praying for your family valiantly.....and keeping tabs on you through your blog. Lots of love and prayers comin' your way!!xoxo

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  7. William,

    You are the best! Congratulations on your derby victory. Thank you for being a great example of bravery for me and my boys. We love you.

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  8. Just got your card also, found your blog and can't stop thinking about you. You are still the amazing people we once knew well. Your boys are so handsome and your spirits are inspiring. Thank you for sharing. We will keep you all in our prayers. Lots of love, Anna and Todd Kirby.

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  9. Hi William, Julie and family- We are SO excited that not only did you get to go to the derby, but you WON TOO! That is so AWESOME!

    Emily and Spencer missed you by 10 minutes at the hospital and were bummed not to see you, but were glad you got to be at home.

    We think of you often, and hope you are well. We also know the meaning of missing the pink bucket, but we have to admit, we have brought so many of them home with us, we now have one in every room, two in Spencer's room (one that is home to legos, not barf), and one in each car! :)

    We just wanted to drop a line and say hello!

    Spencer and the Pihls

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  10. Nice going on your derby win William!

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