Whew, made it through that year! Happy New Year Friends and Family! Thank you all for following along our journey through 2010. And thank you for all your prayers and thoughtful wishes. JT continues to do well. We have weekly clinic visits at the Outpatient BMT Clinic at Egleston where they continue to monitor his blood levels and physical side effects from the transplant. His white blood cells have dropped on a couple of occasions which was easily corrected at home with a short course of Neupogen injections. He has had several courses of antibiotics because his body is not strong enough to fight any infections, so even a paper cut can be bothersome. His weight has been steadily dropping since October, and we are watching that carefully. He is enjoying our switch to high calorie, high fat items like ice cream, butter, chips, etc.! The Doctors are still very cautious about letting him out in public places right now because Georgia has been experiencing a large outbreak of the flu. Originally we thought he would be able to return to school after Winter Break, but they are telling us it will be the end of February, beginning of March at the earliest. We have slowly been weaning him off his medications and he has gone from taking 20 or so pills a day to this week taking only 3 pills! Yeah! The biggest one, his Cyclosporine, should be tapered off in another week. We are so excited to be off this one since it has caused the worst side effects.
It has been quite the year needless to say. We are forever grateful to so many people for helping us through this difficult time. There are so many of you all who I have not been able to thank, but please know that we appreciate everything you’ve done to help our family throughout the last couple of years. I would like to acknowledge the Doctors, Nurses, and Staff at Children’s Healthcare of Atlanta – Egleston BMT Unit. You have no idea how wonderful, compassionate, and loving these people are. They are like family to us and every week we go, we are greeted with smiles & hugs as we enter the clinic. It’s not your typical doctor visit. I would also like to thank CHOA – Northside for their care of JT pre-transplant. We will move back there sometime during the upcoming year where he will be followed as a “survivor” patient. We are excited to see Linda and Dora again…the staff there is just as awesome and we’ve missed them this past year. St. Jude has also been a huge part of this journey and I can’t say enough about this wonderful facility. While I wish no child would have to suffer any disease, it’s truly amazing what they offer to our kids. I would also like to thank Jim’s employer, The Ho-Chunk Nation for allowing him to do his job from Atlanta part-time this past year. I can’t even imagine how we would have gotten through this year without him here. And not to mention, their healthcare insurance plan. Even though we maxed out JT’s lifetime, it has been a humongous burden lifted from our shoulders. Auxient, the company that manages their plan is wonderful and have been very helpful throughout the year as we navigate through the enormous expenses and paperwork associated with a transplant. Our church, Transfiguration Catholic Church in Marietta, GA has also been a tremendous source of support for us. I’d like to express my sincere gratitude to Monsignor Pat, the Anointing of the Sick on August 15th (guess we should have done that before the first transplant!), the kids in Christeen who showed their support during the anointing and later through cards and gifts, Joyce for organizing it all and keeping us connected with everyone throughout the year and for everyone who lifted us up in prayer, we felt all your love and hopefully through this blog, you have witnessed Gods love for all of us!
And finally to our second family, Chestnut Grove. It’s hard to imagine a neighborhood like ours because I think we have something extremely unique and special. Our neighbors are truly like family. Thank you all for the cards, the meals, the gifts, the calls, the rides, the grocery runs, EVERYTHING!!! At times, it has been a little overwhelming and I’m just sorry I didn’t make the time to thank each and every one of you individually. I love and appreciate you and thank you for being there for my family, not just this past year but for the past 19 years…from the birth of Sydney and JT, the infamous move to Chicago (I was so homesick!), job losses, Jim working out of state, diabetes diagnosis, cancer, transplant, the whole kit and caboodle!
Blessings to all our family and friends in 2011! It’s going to be a great year!
xo Sabrina
The dropping blood counts still remain a mystery! JT’s platelets held steady at 17k, but his red & white blood cells are continuing to drop. We are scheduled to go back on Friday for a bone marrow biopsy. They want a closer look at his blood, not looking for anything in particular, but rather making sure they are not missing anything.
