10-4-16

Two days of radiation down, ten to go! So far Drew has started off this phase of treatment with as much enthusiasm and fearlessness as always! We check in about 9:30 a.m., and he's been in treatment for about an hour. Almost as soon as he comes back to the room, he opens his eyes and tries to get up and play. He's got such a drive to be a kid! The last meeting with the Radiologist to go over the final treatment plan was so encouraging. She explained that the last two sets of MRIs taken on that simulation day look great, like they-can't-see-any-cancer-anywhere great! Such a hopeful report! Praise God. So where they are treating now is just the last spots to mildly show up on our last MIBG scan back in June, with the goal of killing any last cancer cells that may still be there which aren't showing up on the scans. She even said had we not been so close to Mayo, they may have just skipped this radiation part since the cancer has responded so well! Josh and I are happy we are still doing it, anything we can do to increase our chances of killing every last cancer cell we will take, but it's so awesome to hear such an optimistic report!

I was feeling pretty nervous and scared yesterday starting this next phase. Just the unknown, and the picture of Drew laying on the table having the proton beam on him made me uneasy. But as usual Drew and his amazing energy and joy made things easy. And after my meeting with the doctor, I couldn't help but be filled with hope. What a miracle I've seen play out these last 8 months. The doctor reminded me how massive his tumor was, she said there was even evidence it had a ruptured, which I hadn't heard before. And just knowing how widespread it had gotten, 30% of his bone marrow was cancer and all of his long bones showed up on the scan as infected with disease. To come to today, where she doesn't even know where to shoot the beam for sure because they can't find anything left that is active to kill! It has been a hard, hard road to get here. But I am so thankful for the doctors, for the treatment, for all the prayers and support, and ultimately to God who has been at work this whole time in so many ways. As I keep reminding everyone, and myself, we still have to finish this radiation, and then 6 months of immunotherapy (which I am hearing the inpatient weeks can be just as tough as chemo), but I know it will be worth it. We can do this. We've gotten this far, we will finish it.

Here's some pictures of his first day of radiation, and the proton beam room. He wasn't so into taking pictures with me yesterday! Then also him this morning shooting some hoops with the child life specialist Randy before going in...

~Heidi