Robert the Great is an amazing kid and has an awesome family behind him- but here is the problem- CANCER IS NOT FREE! Imagine being told that there are few options left, to "make memories......" Imagine wanting to spend every moment with your child, but unable to because medical bills are piling up just trying to save your child's life. Imagine not being able to afford dental insurance for your other children, or not being able to go see that movie.... because you are saving for a trial that is the only place you can hope right now.... I cant even begin to imagine....so instead, I have chosen to imagine making their life a little easier- let's raise funds for the Hart family to make things a little more bearable! Let's make a difference in their lives!
UPDATE FROM ROBERT 'S MOM, KASIE:
Robert had his 60 day post t-cell bone marrow biopsy and spinal tap. It all initially came back clear with no evidence of any Leukemia cells. However a few weeks later we learned that he no longer has any of the fighter tcells remaining in his body; the trial has failed. The Seattle group has provided the stats to our Atlanta team to assist us in developing a plan to move forward. Their studies indicate that any child who loses the cells so soon after transplant will relapse, fast and aggressive. All agree that Roberts relapse is imminent, but we can't know exactly how severe it will be. We will likely use chemo to keep the cancer at a manageable level as we enter the next treatment option, whatever that may be.
So, what now? We are currently attempting to get in the Car-t immunotherapy trial at CHOP. Although it’s similar to Seattle’s, it’s different enough that it might work or at the very least work longer. If this fails, then a Bone Marrow Transplant would be discussed and that my friends would be our all in. A BMT is not a great option for Robert due to the severe liver damage from years of chemo, but if needed a less toxic version may be considered.
Our hope will never falter, though now it seems more guarded. Dr.s are now now kindly suggesting that we enjoy the time that we have with our Son. We no longer talk about statistics or numbers with others. We just keep working the problem the best that we can. We feel as if the cure that we we so desperately want for Robert is quickly slipping from our grasp, but we are trying to remain hopeful that we will still win. As of right now Robert feels great and we plan to take advantage of that and enjoy every second of every day. We will never give up!
Robert is happy, upbeat and enjoying everyday. Negativity or sadness is not a part of his life right now. He is currently enjoying a rare break from pain and discomfort. He looks and feels better than he has in a few years. Per his request, all he knows is that more treatment is ahead. If you happen to cross paths with him, keeps your tears to yourself...he'll likely only have laughs to exchange with you for a while anyway.