So my last post was right in the middle of our day Wednesday. During her blood transfusion Jael spiked a fever of 100.6. For a child with no immune system that is too high. They decided to admit her to the hospital. I was heart broken. The last thing I wanted was to have our family split up. They did blood cultures and found that one of them had some bacteria growth and so that meant that we would need to stay for seven full days to get the IV antibiotics that she needed. I cried and cried. I didn't cry because I was scared for my daughter's life, cause I really wasn't. She was in good hands at the hospital and also she wasn't hot to the touch, she was perfectly happy. It was just total disappointment of being seperated from Heidi and having Jael and I (plus Erik) trapped in a hospital for that long. And I think also just being sick of the process of all of this. Having hope and then having it crushed. Because of the bacterial infection she could not have her stem cells harvested - the entire reason we have been here for the last week. All this time away from home, all the money spent on a hotel room and food - for nothing really.
I will point out that we met some very nice nurses that day - Theresa and a girl that I can't remember her name. They were so nice to Jael and to me during all of that. And Jael had a great attitude through the whole thing.
On Thursday morning we were blessed immensely by good news. At Arnold Palmer Hospital Jael was diagnosed with Classic Medulloblastoma. It's a fast growing cancer that in kids older than 3 the standard treatment is chemo and radiation. We insisted that we did not want radiation and they came up with this alternate plan of doing a series of aggressive chemo treatments here at Shands. Because of the effect of this chemo on her blood counts she needs to have her stem cells harvested now to be given back to her after each of the aggressive treatments later. When we arrived here at Shands for the stem cell harvesting we met with Dr. Amy Smith, who is a neuro-oncologist. She informed us that Classic Medulloblastoma has only a 50% survival rate without radiation. Whereas we were told that it had 75% survival without chemo at Arnold Palmer Hospital. We were devastated by this news and also given a possibilty that it could be even worse than that. Ok, here is the GOOD NEWS. Dr. Smith came in on Thursday morning and told me that Jael's tumor was not Classic Medulloblastoma, but instead it was a much better form of Medulloblastoma that absolutely would not require radiation and had an 85% survival rate. It's the best news I've ever heard.
Then this morning we received more good news. Because Jael was doing so well, because her blood counts are so high, and because the bacteria was not showing up anymore - we get to go home tomorrow!!!!!!!!!!!!!!!!! We have to have a home health care nurse come and help us give her the IV antibiotics and will have to continue that through Wednesday. Home. Ohh...I just can't wait. :-)
I know this blog is scattered and jumbled, but its the best my brain can do right now.