I DID NOT REALIZE IT HAS BEEN THIS LONG SINCE I UPDATED!

We got home January 2nd, and has been a great few weeks! Bella is eating again and in full swing. Everyday she has more and more energy. As I type she is playing school with her big sister and they are both laughing. It is great to hear them both having fun together in our home.

  We have had to be at Shands in clinic 3 days a week for blood counts and she has needed platelet transfusions every other day for the last 3 weeks. The doctors all tell me this is normal and that platelets are the last to come in after a stem cell transplant. We will be starting radiation the week of the 28th, and it will go for 12 business days. Each day she will be put under anesthesia to make sure that she does move even an inch. There has been a lot of planning and scanning to get her ready for this. Yesterday we did another CT Scan and Nuclear- Med test, they actually put her under for the CT scan to find out the dosage that she will need and they did a mold of her body and placed 3 tattoo dots across her stomach where they will be radiating. It is better to do all that now then the day they want to start radiation.I met with the Dr. that is doing radiation on her and he was very pleased with the fact that there is not masses to deal with, and that they are basically just cleaning up the area for any cancerous cells that could have survived the stem cell transplant. He also said she will be one of the easiest patients he has had to deal with in a long time. That made me very happy. I also met with the surgeon and the urologist this week and the nephrostomy tube that goes to the kidney and the JP tube that goes to the urinoma will be staying in while she does radiation, originally they talked about removing the JP drain but after testing the fluid inside of it there is still urine. So it will stay for about 3 months after radiation until they can go in and hopefully fix the ureter. There is a possible chance that they will not be able to fix the ureter and they will have to remove the kidney but we will deal with that if and when the time comes. On a positive note the urinoma  is gone, but with radiation it could open back up and the JP tube, if removed would have to be placed back in. That would put her at risk of the urine being septic in her body and that would be a whole new set of disastrous problems that we do not want to deal with. So both drains stay for now. After radiation we will be doing 6 months of immune therapy, I should hopefully be getting more information on that soon.