Let me first say that I hope everyone had a great Thanksgiving holiday…I know we did! It was so great being home with family and friends.
Well we have dates! Dr. Sholler’s office called to give me scan dates We are flying up on Monday, Dec.3rd and Bailey will get scans on Tuesday and Wednesday! Right now we have no idea how long we will be there because so much depends on what scans show and what her counts will do betweeen then and now. To say the least, we are so excited to meet this new team of specialist. I am very hopeful that we will have awesome scan results and even better news of what her upcoming treatments will be. I am so at peace with our decision to move treatments to Michigan…It is a great feeling.
Bailey has been doing really good. Her counts were staying really low for awhile, even with the stem cell rescue she received on November 8th but thankfully on Monday, when we were at Tulane prepared for a second stem cell rescue, we got good news Bailey’s counts more than doubled and Dr. Kanter felt like she would be ok not using another bag of her precious stem cells. Let’s just say this was one happy momma! As most parents of a child with cancer knows, stem cells are very hard to harvest which means that you have to use them as sparingly as possible and only in specific scenarios. Stem cells are used to help the body recover from harsh treatments. Unfortunately with neuroblastoma, the stem cells must be their own and cannot come from a donor…making the process that much harder. When Bailey was first diagnosed we tried harvesting stem cells four times and were not successful. It wasn’t until we went to New York and followed a regiment of chemo that was suggested by the doctors there that we were able to collect. Thankfully at the time we collected 7 bags, which is really good! Since Bailey has received so much chemo and so much radiation it becomes very hard for her bone marrow to recover after treatment making it necessary to have stem cell rescues. After the first MIBG treatment that was paired with the chemo Vorinostat, we had to use 4 bags of her stem cells to make sure she recovered, only leaving us with 3 bags. When it was decided that she would have a second round of MIBG we knew it would probably be necessary to use even more of the dwindling stem cells but since treatment worked so well the first time we felt it was in her best interest to go forward with that plan. With all that being said I was praying like crazy that the one bag we gave her on November 8th would do the trick and thankfully it did! Her counts are recovering, very slowly, but we will take anything at this point! It is very important to have some stem cell bags in reserve for future treatments if needed, and thankfully we do!
So the plan is to go up to Michigan on Monday, do her scans on Tuesday and Wednesday, then meet with Dr. Sholler and her team on Thursday. We need big prayers that Bailey’s counts, specifically her platelet counts, begin to recover quickly and at a higher rate than they have been. In order to start any trial you have to meet certain requirements with regards to blood counts, etc and right now she isn’t even close…so please please please join me in praying that her counts double everyday and she will be fully recovered so we can get on a maintenance plan as quickly as possible…and I say maintenance becasue I am standing in faith that we will get a clean report from the upcoming scans.
My little girl is amazing to say the least…despite her low counts, multiple hospital trips every week, countless transfusions over the last 4 months, being poked and prodded everyday, etc. etc…she still wears her contagious little smile everyday She is still keeping up with all of her schoolwork, still going to guitar lessons every week, still playing wtih her brothers and still making us laugh! She is such a remarkable little girl and has endured so much in her short 10 years…I just know she was meant for great things and I cannot wait to see what her future holds.
I will keep everyone updated once we get up to Michigan…until then please continue praying for high counts and safe travels…NOTHING IS IMPOSSIBLE!
Ruth 4:15…”And may he be to you a restorer of life and a nourisher of your old age…”