Thursday, March 24, 2011

Remission Correction

Today's weekly oncology clinic visit went well. Except for the fact that I was so focused on getting copies of all the printed test and scan results, scanning them for anything I might want to talk about, I forgot to ask about the big R---remission. I called back and asked the receptionist (she's new, bless her clueless heart) to relay the question to the doctor. The relayed response was... No, he is not quite considered in remission even though the bone marrow is negative. And then she said something about labs being done. I'm assuming she meant more labs need to be done to determine that because I am hoping that if current lab results indicated something I should know, I would have been told. But that is often an enormous assumption.

With all that out in the open, we are still thrilled with a negative biopsy result, regardless of the terminology used to describe William's current state. We are grateful for the outpouring of shared sentiments of joy and gratitude. I was asked how long I cried after hearing the news. I didn't. I still haven't. Nothing about our daily lives changes. We still go to the oncology clinic once a week, draw labs twice a week, head to the hospital for radiation every day, administer several medications 2-3 times a day, juggle who cares for the rest of the boys, and anticipate the unexpected at any time. Perhaps I'm becoming emotionally callous with all the roller coasters we've been on. Our guards are still up a bit as he still has months of treatment to endure. But yes, we are breathing deep sighs of relief at this point. It is wonderful and miraculous and exciting and relieving. It is progress.

Radiation continues to go well and the routine has settled into a standard 20 minute appointment each day (plus the 1 hour commute time). William is a trooper and loves getting in and out so quickly, but he did get sad the other day when I mentioned he'd have to do some schoolwork when we got home from the hospital.
William: Why can't I just have ONE day without hospitals, doctors, or homework. I just want to sit and relax in quiet at home?
Me: That happens on Saturdays and Sundays.
William: No it doesn't. My brothers are home and they are always loud and crazy.

Here's a brief clip of the set up for radiation. He lays with his legs in a customized mold to make sure he is positioned correctly each time. The green lasers are used with the tattoos on his abdomen to line everything up just right. They also made some additional marks on his torso, but they will wash off after treatment is complete. The video shows William getting the quick CT scan right before radiation begins each day. I can't be in the room for the actual radiation zap, but this will have to suffice to give you all a visual. The cancer center is brand new and the equipment looks so beautiful and new and high tech and clean. What more could I ask for?


  1. A hugh YAHOO from your Texas cheer leaders!

  2. This comment has been removed by the author.

  3. Still good news, though, and we'll take all the good we can get! :) Lots and lots of love from Vegas...I'll be back to visit SOON, and maybe I can take William's 'loud and crazy' brothers for an outing on a Saturday so he can have his quiet, relaxing day! :) We'll just assume that next time I'm there it won't rain the whole time! <3

  4. P.S. That removed comment by Deanna was actually the heck did I get logged in as Deanna?! I have NO idea! :D

  5. Wow -- I've never seen a 9 year-old lie so still while awake, especially with a big, scary machine rotating around his body. He's a pro! :-)

  6. Looks very much like the routine I had-and I think your other grandma can probably relate too. Do they pipe in relaxing music for you? Do the machines move for another angle? Love to you all. Julie, you are so deeply involved, and always will be. That is a blessing for the whole family, but especially Will. The tears will come when they come. Will, Grandpa and I promise you a vacation all by yourself when you can be able to travel. For now, everybody's job is to hang in there and keep smiling. That's even my job!!

  7. You are all so brave! We love you and pray for you every day. We're grateful that you share the news with us through this blog. Hugs to you all!