Book thirty-six: Saving Henry: A Mother's Journey by Laurie Strongin

This was a hard book to read, a look at what might have been if our Henry had tested positive for Fanconi anemia (FA). Except for us, it'd be less difficult because the road has been paved. The ethical issue centers around PGD (preimplantation genetic diagnosis), also known as embryo screening. Laurie Strongin was one of the first women to attempt to create an exact match for her son, Henry, who was in need of a bone marrow transplant. Using this pioneering technique, embryos were tested to make sure they were Fanconi-free and they were the exact HLA* match needed for Henry's type of FA. After nine attempts and at least one miscarriage, Strongin ran out of time. Henry ended up receiving bone marrow from a stranger who was a near-perfect match. In the end, it wasn't enough to save him.

"...it was, of course, not lost on any of us that the Dickey Amendment-induced delay that interrupted Dr. Hughes's work for nearly one year and denied us the time for at least three additional PGD attempts. One of those just might have made all the difference."

(Our) Hen's neutrophil count was dangerously low for quite some time. He was poked and prodded several times a week for over a month (when testing for cyclic neutropenia) and every couple of weeks after that, he went through two bone marrow tests, one skin biopsy, an endoscopy, and a one-week stay at the cancer ward when he came down with something his body couldn't fight on its own. At the very beginning, when names of diseases were being thrown out as possible causes for his neutropenia (and plummeting weight), we searched online for information and talked about having a second child. If Hen needed bone marrow, we were completely ready to make a sibling who would be a perfect match. Fanconi anemia was on the list and then taken off and then put back on when answers continued to elude the doctors. It wasn't until his skin biopsy was done and the results were received that we knew definitively that that wasn't what afflicted Henry. How lucky we were. It wasn't until reading this book that I got a clear understanding of how precarious things were for my own son. He doesn't have FA but his ability to fight infection was just as compromised as someone who did. This is why, whenever we did make runs to the ER for fevers that barely registered, Hen was immediately given a mask and whisked away to a private room. This is why our pediatrician was adamant about removing Henry from and keeping him out of daycare and pretty much every other public place. At one point in the book, the parents are worried and anxious because their son's neutrophil count dropped to 800. 800. That number seems astronomically high. Hen spent several months bouncing from 100 to 200 to 400 and back down to 200 again. I am so very thankful Hen is healthy.

26 down, plus 10.

*Human leukocyte antigen are genes that recognize whether a cell is foreign to the body. Because HLA type is inherited, siblings have the greatest likelihood of being perfectly matched, making them ideal donors.