A lot has happened in the last few days. I’ll catch you up.
First, we went to Mayo on Tuesday to get my fancy bloodwork and meet with Julia, the pediatric BMT nurse practitioner, who filled us in.
The Road to a Match
Julia and the National Bone Marrow Registry Team are in hot pursuit of finding me a perfect match! In our meeting, Julia brought up on the screen exactly how they measure my match. There are 10(ish) genetic points they measure. The first eight are pretty straightforward, while the last two are a bit finicky.
I created a little sample below of what the results look like. These aren’t our real genetic codes (like I’d give that to you), but it’s interesting to see how things shape up. You can see how Jack and I pull a number from each of our parents. I like to call it our own little Maury DNA test to prove the redhead milkman theory false. While it was proven that we’re definitely related, we’re of little bone marrow help to each other.
|13, 26||2, 13||26,4||4, 2|
|15, 11||14, 15||11, 5||11, 14|
|3, 17||9, 18||17, 3||3, 9|
|8, 6||27, 6||8, 21||27, 8|
But then she showed us a new column – the column of a potential donor who has already gone in for his (or her) bloodwork. As Julia ticked down the list, the donor’s numbers echoed mine exactly.
“Thirteen, twenty-six, thirteen, twenty-six. Fifteen, eleven, fifteen, eleven.”
So far we’re an 8 of 8 perfect match! They should have the results of the final two measures by the end of this week.
Three other potential close matches are receiving bloodwork soon – one tomorrow, Monday and Tuesday. We expect to have their initial eight scores by the end of next week and the final results by the week of March 28. Two of the donors are from the U.S. and two are international, which could make me a cultural hybrid delight. It’s already apparent that I have the best potential donors ever because they’re moving so quickly to get bloodwork done. THANK YOU, wherever you are!
As for the rest of the process, we received a library of materials from Julia. It was very difficult for my mom and I to read about the extensive BMT process. I’ll write more about next steps in a future post.
Let’s just say I’m not looking forward to this.
It’s been decided that I’ll be treated in pediatrics, not only because I can dominate a good game of Candyland, but because all the doctors know me very well. “We all talked about it, and we would really like to treat you here, if you’ll have us,” said Dr. Arndt. I can’t say no to that.
While the adult BMT doctors may be more appropriate in some ways (I guess I am a grown-up officially), these doctors are very familiar with my case, are coordinating with adult BMT, and are putting me up in what is really the penthouse of the hospital – pediatrics. I know this from my extensive stays there as a senior in high school. There are actually butterflies painted into the walls. Plus, I’ll always be at least somewhat of an Easy Bake Oven-baking, Pretty, Pretty Princess-playing pediatric patient because my original cancer (osteosarcoma) is a pediatric cancer.
Field Trip to the ER
The reason I didn’t write earlier was that yesterday was a bit dramatic. I got sick in the middle of the day and ended up in the ER after a bad reaction to all the antibiotics I’ve been on. My blood counts are also plummeting (8.3 hemoglobin and 25,000 platelets), so they’re watching closely for when I need a transfusion. At this point I’m just ready to have them keep the IV in my arm.
I’m home, on some different medications and am doing better. We suspect I’ll need a transfusion or two in the next few days, which really wouldn’t be a big deal if it weren’t for the needle pokes.
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