BIG Post coming. You’re gonna need a meal or two just to get through it. But not yet. Soon my pets. Soon.
In other news, after a convoluted conversation with my grandmother, I found out very late that my cousin (who is very young) was diagnosed with a very rare disease. Niemann Picks is a very rare genetic disorder that causes severe organ enlargement and malfunctions and eventually death by age three. After finding their web site, and reading the blog (under “status”) I wanted to say how much my heart goes out to them. My uncle and I had a large falling out after the death of my grandfather last year, but I know what it is like to think you are going to lose your baby daughter. They told us that Madelyn probably had bone cancer before they diagnosed the Aneurysmal Bone Cyst. It was a very difficult time for Mrs. Bixby (Not Her Real Name) and me. I can’t imagine going through that for eight months as they have.
Jessica is one of three children in the world who have undergone a new and dangerous procedure to treat this disease. The first little girl who had the procedure died, but Jessica and Anna (the third girl) seem to be responding to it. It is given at the University of Minnesota and Jessica has been up there since February. The procedure sounds similar to one that a schoolmate of mine had to treat MS. The patient is given two full rounds of chemo (in Jessica’s case, I imagine my adult friend had a larger regimen of chemo) to kill the immune system and other diseased cells and is then injected with stem cells (from their own bone marrow, bone marrow transplant or umbilical cord blood) to restart the immune system and/or replace the diseased cells. Jessica had the transplant in early March and seems to be recovering very well – an MRI from the other day showed that her brain displayed normal myelination, a marked improvement. I am very glad that she is doing so well.
However, the procedure is very expensive and Tommy and Julie could use all the help they can get. Please visit http://www.babyjessica.net and consider Buying a Bracelet or donating to the The Jessica Tucker Medical Expense Fund. All donations would be appreciated and religious as they are, prayers you could send their way (if you are religiously inclined) would also be appreciated.