On the Horizon

Dec 15, 2019



In the world of bone marrow transplants, Day +100 is a big deal.

A couple of months ago, we said, "I wonder what the date is for Aaron's 100 days? It must be right around Christmas." We consulted a calendar and were delighted to discover that Day +100 landed exactly on December 25th.

For leukemia patients, I believe Day +100 is when they start being weaned off of the anti-rejection drug. They need their immune systems back up and running to be able to fight the cancer.

But Aaron doesn't have any cancer to fight, so he will continue to stay on tacro (the anti-rejection drug) for an additional three months before beginning the three-month weaning period. With aplastic anemia, it takes longer to fully restore and replenish the bone marrow, and so the extra months with tacro help give the body time to do that.

But even though Aaron won't enjoy any change in that drug, Day +100 is still an important milestone for a number of reasons:

1. The risk of GVHD (graft-versus-host-disease) drops significantly after the first 100 days. Up to this point, Aaron has not shown a single sign of it. (The risk will increase again when he comes off of tacro in the spring).

2. Aaron has stayed almost completely healthy during these 100 days. This has allowed his body to focus on blood cell production instead of fighting infections.

3. This past week, the BMT team took him off of two medications: fluconazole (given to prevent fungal and yeast infections) and ursodiol (used to protect the liver). I'm not sure how they decide it's the right time to discontinue these medications; his blood counts have changed very little in the last few weeks, so it must have more to do with the passing of time than cell production.

4. This coming week, we are going to try to transition Aaron from IV magnesium to oral magnesium. This is in preparation for . . .

5. . . . the removal of Aaron's central line! We don't have an exact date yet, but if everything continues to go well, his line will be removed sometime in the next two weeks. We are all excited for this one.

6. Most bone marrow transplant patients we know had almost all of their food restrictions lifted at Day +100. The doctors have not talked about this with Aaron yet, so we're trying not to get our hopes up (but I still might have googled "restaurants open on Christmas Day in Salt Lake City" just in case that information proves useful).

7. In the next couple of weeks, Aaron will get to redo a lot of the tests he did before his transplant (pulmonary, EKG, auditory, etc.) to see if he sustained any damage from the chemotherapy.

8. Aaron's frequent clinic appointments will drop from twice a week to once a week.

9. We might be able to relax our rules about isolation. Aaron certainly hopes so because there are a couple of family Christmas parties he desperately would like to go to. However, I'm hesitant to even wish for this or make any sorts of promises since he is unfortunately reaching Day +100 just as cold and flu season is getting into full swing.

No matter what though, 100 days post-transplant is a huge achievement, and I know that Aaron will look at any gain, even very small ones, as the best Christmas present ever.


3 comments:

  1. Lovely tree! (Nice looking boy, too). Good luck on Aaron getting to go to a few parties this season!

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  2. All sounds good. The last year Aaron’s family came to our family Christmas party it resulted in a 6 month fight with sickness for the cf kids and multiple hospital stays. We learned it just wasn’t worth the risk of all being together in an inside space.

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  3. Yay!! Congratulations! So wonderful he has remained illness-free! Keep up the good work, all of you! Love!!

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