What a difference a day or in this case, two days, makes. We have some answers and very good news to share. There is nothing on the MRI or EEG to suggest that Phoebe was ever having seizures, and the opthamologist, after looking at the video of Phoebe sleeping and eye rolling, said that it is completely normal behaviour. He actually said it is good and something that he likes to see people do. First sigh of relief. Next, he examined Phoebe's eyes, and found the same swelling that the previous opthamologist reported. It is minor, but they have started Phoebe on another medication to treat it, and the plan is to follow it and run some more tests next week to hopefully find the source of the swelling and to prevent any damage to Phoebe's eyes. Phoebe appears to have incredibly good vision and we would like to keep it that way.
The opthamologist had me very worried yesterday when he mentioned that Leukemia can infiltrate the optic nerves - this is something that we know from the past and the reason Phoebe had an MRI at Sick Kids was to rule it out (which it did). Leukemia will forever be on my mind, and the fear of relapse is very real. However, the results of Phoebe's lumbar puncture show that her spinal fluid is clear of any Leukemia, her latest Chimerism test shows 100% percent donor cells, and the MRI shows no evidence of Leukemic infiltration. According to Phoebe's BMT doctors, the likelihood of the optic nerve issue being related to Leukemia, is very very slim. Almost impossible given the treatment Phoebe has received, the results of all of these tests and her twice perfect chimerism. Second giant sigh of relief.
Phoebe's transplant related issues are also working themselves out. Her liver enzymes are almost completely back to normal, her belly is smaller and she is no longer retaining fluid. She is eating again, via her NG tube, and has even sampled some cheerios and other random snack food. Her blood work looks great and she appears to be feeling better, albeit a bit depressed. The doctors have considered all of these things and decided that Phoebe is ready to go home. HOME. To her little home in Memphis to spend Christmas with her family. She will still be monitored very closely in the clinic at the hospital, and we expect to stay in Memphis for at least 100 days post transplant, but she will sleep in her crib at night, and share her days with her big sister.
We are counting up and away from all things Cancer and this Christmas will be the first of many family holidays that we will spend together. It will also be the first Christmas that we will spend as a family as last year Phoebe was in the hospital. There are no words to express just how much this means to us. Before we arrived at St. Jude we worried that Phoebe would not be here to celebrate her second Christmas. Now, against all odds, not only is she here but she is in remission with a full chimerism, and her future is so bright. What she has done to make it here is simply amazing, and we are so very proud of her.
Thank-you for continuing to keep Phoebe in your thoughts and prayers. Your love, support and wonderful messages and words have meant so much to us and have helped to make even the darkest days a little brighter.