Today was Naomi’s 1st evaluation for her 1 year transplant anniversary. Many BMT patients experience a decline in vision from the chemotherapy and other pharmaceuticals used during treatment. Thankfully, she still has perfect vision and her retina and nerves were all beautiful with no issues to note. Yay!
Monthly Archives: November 2014
Day +292 – City of Hope
Naomi and I made a down and back trip to City of Hope today. Her lab results were good, except that her kidneys are performing at half what they were before transplant. While her creatine and BUN levels are within “normal range,” or very close to normal, they are twice her baseline. So, once again, we see that she is simply just not drinking enough. That has been the story of our lives for the past few months. Hot summers here took a toll on her and now she has such a deficit of water that only weaning from cyclosporine will improve her levels.
Fortunately, weaning from cyclosporine is exactly the plan. Over the next 8 weeks, she will taper her cyclosporine dose. December 28th will be the last day for her to take cyclosporine. Bactrim will continue for another 8 weeks beyond Dec 28. But Bactrim is only a 2 day per week medicine.
In early, January, she will have her 1 year evaluations. We are waiting for them to be scheduled here at home. They will include an echo, ekg, endocrinology work up, dentist visit, eye exam, and a bunch of fasting blood tests. She will take her last dose of Bactrim on Feb 21 and then have her next visit to COH Feb 23 for a 1 year engraftment analysis. This will be done via peripheral blood, not bone marrow biopsy.
Naomi will have CBC tests scheduled once every 4 weeks for the foreseeable future. The current plan is for this to be done at the local doctor’s office. I plan to inquire about getting orders to go to Quest labs which are less than a mile from home.
One year ago today, Naomi was released after abdominal surgery and the future was uncertain, and the need for her to have a transplant growing more obviously necessary. Today, she has recovered amazingly.
Her doctor spent a lot of time showing me Naomi’s growth charts. Last year at this time, when she first began treatment at COH she was at about the 30th percentile for height and weight for her age. She wavered around the 40th percentile line during her transplant in-patient time. Since her release from the hospital, in the past 6 months, she has crossed over the 50th percentile line (the goal for 1 year post transplant) and is now approaching the 70th percentile! Her chart showed such a straight line of growth that it was remarkable and indicates a very strong recovery.
2014 is coming to a close. It has been a year of uncertainty, walking by faith, and going through our hardest times ever. We are thrilled that she will be off cyclosporine before the end of the year and we can put this year behind us. I also want to recognize the many AA patients who have not been so fortunate to have such an expeditious treatment plan. Many get treated with ATG and wait years for a transplant, being transfusion dependent for so much longer than Naomi’s 4 months. As stressful as that time was for us, my heart goes out to those who endure it longer. As difficult as this has been for all of us, I am thankful that she is not only still with us, but that she is also thriving and that the time for her to be off meds is in sight!