At the beginning of January Eli brought home this letter from school for Troy and me. Can you read it? It says:
Dear Mom and Dad.
I made a new hope and dream for 2013. It is I hope to help others when they need help. I hope to get better at math strategies. I'm thankful for you guys because you are not afraid of telling me bad news.
From Eli
To say this brought tears to my eyes is an understatement. As you know, we've had to give Eli quite a bit of bad news lately. This past week we had to give him even more.
As it turns out, Eli also has Adrenoleukodystrophy (ALD). We've actually known about this for a while but it was unclear if his disease was active &/or progressing. Eli had a repeat MRI recently that showed a small but clear amount of progression of the demyelination of his white matter. Unlike Henry though, his is early and at this point he's showing no outward symptoms. Due to that, Eli is eligible for a bone marrow transplant (BMT) to halt the progression of his disease.
We're in the process right now of planning for his BMT. We're hoping to get started at the end of February at Amplatz in Minneapolis. I'm not sure if I've mentioned it before but the doctors at Amplatz are the premier experts in the world for ALD patients. They are one of the only hospitals that does BMTs on these boys. We are incredibly fortunate to have this right in our back yard.
Eli's schedule will go something like this:
- 5 days of outpatient pre-op testing and lab work
- Couple of rest days
- 3 or 4 days of inpatient chemo
- At least a week of rest days at home
- Then Eli will be admitted to the hospital for about 6 weeks.
- This will include 8 days of chemo, then a rest day, then transplant day. After that he'll spend the rest of the time recovering.
- Once he's ready to come home, we expect him to be home-bound until around October.
This is a long, scary process. Eli is going to be a very sick little boy for a while. But, we have every reason to be hopeful. Eli now has the opportunity to grow up to be a normal, healthy adult - that's amazing!
Think good thoughts for my little guy and my bigger little guy too. Actually we're all going to need them.
