To fully understand the story of how Jacob became the donor, there is some necessary information that will lay the groundwork.
First, some important details about Jacob...
There are two key components to Jacob's personality that exist in direct opposition to one another.
- He is immovable in the pursuit of his own convictions.
- He struggles to make up his mind about what he wants.
 |
| small but mighty |
The first - if Jacob has made up his mind about something, he is completely immovable. When he knows, he knows. There is no amount of logic or discussion or cajoling or bribery that can get him to do something if he doesn't want to do it. I am talking about things as minor as trying to convince him to try a piece of cake in a new flavor. It doesn't matter to him that cake is generally delicious. It doesn't matter that he tried something similar before. It doesn't matter that every single person around him is enjoying it. If he's decided not to eat that cake, he's not going to eat it. This is a fairly innocuous example but I'm sure you can use your imagination to fill in the blanks on the other types of battles we face. When our purposes align, he is a joy and a delight. When our preferences diverge, it can get tricky.
And then, seemingly in total opposition to that, the second key component of Jacob is that he vacillates wildly with indecision when he doesn't have the assurance of conviction. Again, this can apply in pleasant scenarios just as frequently as unpleasant ones. He can be playing happily at home and Isaac will offer to to take Jacob and Libby to the park. The weight of the indecision - he loves both things equally - can tear him apart. He doesn't know what to do. He panics at the thought of being forced into a decision and shuts down. It's a real struggle.
You can imagine how challenging it can be for him to manage such strong emotions. I'm generally in awe at how fully committed he can be. For such a little person, the force of his will has always been a dominant factor in our family dynamic. While sometimes I'm also mildly terrified by it, I can see how valuable it truly is. It cannot be overstated - Jacob feels hard and he loves hard. It took me awhile to learn this about him and to understand his motivations. We've learned a lot of strategies to come alongside him, help him to process his feelings and learn to make his own (informed) choices. It's been a long road, but he has grown by leaps and bounds in the past few years. He's taken on the role of big brother (turns out it's not easier on that side of the fence!), he's adapted to school better than we could have ever imagined, he's built thriving friendships, and he's learned a lot about going with the flow, at least to some extent.
With all that said, for our story, it's important to understand that convincing Jacob to do something that he doesn't want to do is not really an option. He has to decide on his own and sometimes the deciding can be really hard.
And some backstory on the donation process...
When we knew that a bone marrow transplant was likely in Aaron's future, we had sent off swabs to the NIH for donor match testing for Isaac, Sam, and Jacob. I was ruled out as a potential option since being a carrier of the gene would not be a suitable donor. Isaac was unlikely, since a parent is usually only a 50% match (having given 50% of their genetic material in the first place) which also isn't considered to be sufficient as a donor.
Please bear with me...this is my imperfect understanding of extremely complicated science. I'll try to explain it as best I can! A donor match is determined by your HLA (human leukocyte antigens). The cheek swab test shows the two markers on 8-10 specific antigens - you get one from your father and one from your mother on each antigen. Matching on those antigens is essential to reduce your body's inclination to reject foreign matter. It is considered to be a good match when 8 out of the 10 are the same - which can happen from a stranger as well as a family member! A full match is when all 10 antigens match.
Here's just one example from our chart:
| Antigen B |
Aaron | 55:35 |
Sam | 49:15 |
Jacob | 55:35 |
|
|
Isaac | 55:49 |
Sarah | 15:35 |
So again, you'll have to trust my imperfect understanding of how this works, but you can see I highlighted the marker from Isaac in blue or green and the marker from me in purple or pink. I was able to determine my markers by eliminating the markers from Isaac on each kid.
Across the board for all the markers that they tested, Jacob and Aaron were exactly the same. You can see that Sam has the exact opposite markers on this antigen and pretty much every other one as well. In fact, the geneticist joked that she wasn't even sure Sam was in the same family (which seems like it could not be a great joke in some circumstances) but the bottom line was that Sam was not a match to Aaron at all and Jacob was a perfect match.
They say that it's a 1 in 4 chance of a sibling being a match, which seems like it doesn't entirely line up with my rudimentary understanding of statistics and probability, but alas, it's more rare than common.
So that's the helpful information to know before our story picks up again in Part Two: Jacob's Journey
Comments
Post a Comment