I didn't think I'd ever hate a letter like I hate the L. I suppose if we are talking cholesterol, L is a good thing, right? Today I have the L next to the white blood cell count. Not that we don't know it, but seeing it is a different matter completely. It is almost bone marrow biopsy time and I start wanting to hear things like "normal". Here we are almost 15 years later and Shwachman-Diamond Syndrome is still part of our world. Mitochondrial Disease is still here, too.
We've had many miracles over the years, no doubt. I believe the times we've been close to transplant and then had the marrow change for the better ARE miracles. I also wonder why God doesn't perform that miracle for everyone. David died last year because he needed a transplant, developed leukemia and did not have a match in the registry (Our Joseph doesn't have a match) -- why was Joseph spared and not David? Harriet passed away on Good Friday and I wonder why her mom didn't get a miracle. They had already lost Sarah to Shwachman-Diamond Syndrome several years earlier. Why did their family have to lose two kids? Of course, I understand that God's will be done.... but I want His will to be that the children live! I have hope because I am God's girl and I know that he will do awesome and amazing things if it is His will.
We have a long list of friends who have died from SDS complications and SDS transplant complications. Of the top of my head, the families I try to remember daily in prayer... Angela, Heather, Jessica O, Christopher, Dan, Tyler, Angelica, McKenzie, Jason, Anna,Colleen, Marc, Brendan, Devin, Melanie, Jessica G, Aley, Beatrice, Nathan, Sarah and Harriett We met so many of these families at conferences, camps and while we are at the hospital (Cincy).
If you are not on the bone marrow donor registry, please consider joining. www.marrow.org You could be the miracle that saves someone's life! It is easy to join! no blood draw! They just rub swabs on your cheeks!