10-24-16

Post-radiation Drew has been pretty similar to pre-radiation Drew, although he's back to napping in the afternoon again! The doctors have been monitoring his ears as they've noticed some buildup of wax since the summer. We've been trying to clean it out so they can do a proper hearing test. But at last week's check, they found evidence he may have had an infection behind the wax that was already starting to clear up. We are now doing drops twice a day in both ears to take care of any possible infection and keep clearing out the wax. Besides that, we are settling back into our routine home-care of line flushes, dressing changes, feeding tube feedings, and medications to administer. He has hair on his head that seems to be turning from "peach fuzz" like to fine, darker strands. We all have a had a little cold this last week. Really not to terrible of one, but enough to wake him up a time or two at night if he coughs or loses his binkie, since he can't breathe out his nose. Overall, he's still a ball of energy and joy, and finds new ways to make us all laugh each day. He's really a ham for attention. He probably gets that from his Dad... ;)

This week now we go in on Wednesday to get the radio-active dye put in him for his MIBG scan, and an echocardiogram again. Then Thursday he has his scan and a bone marrow biopsy. This information will let them re-assess his cancer situation and give us a new status, or stage. Please join us in praying that this scan and biopsy show no cancer, and we can go into immunotherapy as optimistic as we can and free of any detectable disease!

I've been getting a lot of questions about immunotherapy. And I don't have all the answers, but I think it would be helpful to give an overview of our next phase as best I can. In a nutshell, it's a therapy plan that will strengthen and train his immune system to identify the protein in the cancer so that his own body can fight it off before it has a chance to grow and spread, should it come back. It is kind of a new field of cancer treatment that has been shown to give him a much better chance (like 20% better) that he won't have a relapse. That is great news, and we jump at the chance to grab any more percentages that we can since a relapse is very scary with Neuroblastoma. The therapy includes 6 cycles, about a month long, that include injections at home, inpatient antibody infusions, and oral drugs taken at home. Every cycle but the last includes a week long hospital stay for the infusions, with two of the cycles having infusions for 2 weeks. We hear these infusions can be rough. He will have fevers, intense pain, even blood pressure changes. He is monitored closely while he is receiving the antibodies and put on different medications accordingly. We are not looking forward to these stays, but we know that each one completed will bring us closer to being done. The first infusion is planned for the first full week in November, the 6th-10th. You could already be praying that he can get through the week as strong as possible. We face more suffering knowing how God has sustained us through the summer, and trusting that He will be there for Drew and us again.

The cold we've had this week and the possible ear infection Drew may have had, has made me think back to days when those two things would have been a huge deal in this house. All parents of little kids dread the "sick season" as I call it, when kids seem to have a cold or develop ear infections all winter. Night wakings would really bother me. I need my sleep! And then trying to decide when its time to take them in to the doctor stressed me out. How far we've all come. Heck--if Drew really had an ear infection, he didn't even show it! I am thankful for the growth I've done this year. But it also makes me a little sad. Why can't we just be dealing with colds and ear infections again? As I put the hospital stays on my calendar and begin planning for care of Molly and such, I stop and really take it in. Even a 2 day hospitalization with pneumonia or croup or something would be a big deal for a "normal" family. Here I am, planning 7 weeks of hospital stays in the next 5 months. I wish we were done. I wish we had zero more hospital stays and no more suffering for Drew to endure. But I remind myself what I learned over the summer...the suffering is not in vain. No matter what, God is using Drew and us for good things, big things! And I know that. It just makes me sad, even mad, that it has to be at our happy little Drew's expense, while it seems like every other two year old gets to just be a kid. Why us? But then I think the words a wise friend told me at the beginning to ask--why not us? And that is true. Why not us. We can do this. Like I've said before, we have come this far. We will finish this. We are strong through our Lord and your prayers. We can do this!

Thank you all for the support and prayers as always! We probably won't find out results from the scan until early next week, but I'll be sure to share as soon as we do!

~Heidi