Flip-Flop

We were finally able to meet with the transplant doctor. He had met with our primary team of docs and through a lengthy discussion determined that Kelsey is in more dire need of the transplant right now. Karly's cancer doctor felt like she could wait till later this year to get her transplant. Some of the reasoning behind this is that Kelsey's health is deteriorating at a steady decline. At some unknown future point, she might become ineligible. Kelsey is mostly non-functioning these days. Her pain in increasing. As she gains weight from steroids and other issues, it causes stress on the rest of her body. She woke up this morning with one eye swollen and unable to open. Of course, with each new problem grows concern. Her doctors are so on top of it. With one email, we are talking with the very best and dealing with treatment. With the new eye development, if it doesn't improve with the treatment in a day, she will be flying to Maryland right away. This is how serious any new thing is with her. Kelsey appreciates being asked how she is doing or feeling, however, she gets apprehensive to tell them the real truth. People expect her to be doing better. The truth is that the disease progresses. She's the oldest living person with Dock 8. This takes nothing away from the prayers and the knowledge that she could be healed at anytime. The moment that would happen, the news would be heard! Until that time, she gets more and more non-functioning everyday. Although Karly's disease is progressing, she is functioning. She adds more treatments to her daily list of stuff. With each new symptom, I can see the concern on her face. She doesn't want to look or feel as bad as Kelsey. With that being said, I'm sure she is anticipating her transplant. The relapse of her cancer is the biggest area of concern, so her transplant will happen yet this year. Many people have been asking about if we have our donor. NO, we don't. One very large, nice specimen of stem cells that they can share is still the perfect scenario. I believe they would transplant the girls together if this would happen. This would mean less time for the family to be apart. Tracy would function as a single parent for only half the time. As it is now, Kelsey goes for a week of eligibility testing on Sept.27. At the end of that week, she signs the paperwork, and the two cord bloods are ordered. Dr. Freeman would then start her magic to get Kelsey's body in the best shape it can be before the transplant. About mid-October the regime for preparing her body for the transplant begins. She gets essentially 5 days of chemo, 1 day of radiation, then her new stem cells. This is when the hard part begins, and the doctors really work overtime. We will need lots of prayers during this time. We need: the infections to stay away, stem cells to engraft, her remaining immune system to not attack and destroy the donor's cell which is called graft rejection, the donor immune cells to not attack and destroy her normal tissues and organs which is called graft versus host disease, and she needs her own blood and immune cells to fully convert to her donor's type which is called full donor chimerism. Karly is fine with Kelsey going first. She said, "As long as I get mine." Kelsey and the family have made this decision fully aware of the risks. We continue to trust our Lord with the outcome. There will be no regrets, no second guessing, no asking why. We are fine. From the first day we went to NIH, we have felt like God placed us there. The girls basically have grown up there. There isn't a day that goes by when we are at the Clinical Center where we don't see familiar faces, get hugs, see smiles, and know that they truly cared for. Our family and friends continue to care for us in big ways. Keep it up prayer warriors!
Love,
Mom