Friday was our much anticipated two year conference and despite having plans in place and Brian being home I ended up going on my own. Georgia has been battling a cough and cold which we didn't want to share with her cousin so Brian stayed home and they joined the conference via FaceTime - ah, technology.
I felt good walking in, relying on my past history of,
if somethings wrong they'll call, it had been two weeks without a call. I went to the conference room and waited, in walked a nurse and my face lit up, I knew her well, but not from the SCCA, her name is Katie and she was one of our most favorite nurses at Children's, she is the one who actually gave Georgia her transplant, hooked it up, and monitored her every 15 minutes through the night until the call was made that her body had had enough. On more than one occasion she was a therapist to me and was always so good to Georgia. To my surprise Katie had moved over to the SCCA from Children's at the end of last year, it felt so good to have her there, someone who has been with us the whole way. Katie actually said, "I remember the night you guys checked it" she recited the room and bed number we were first assigned to.
Moments later, Dr. Carpenter, our transplant doctor walked in, there was a sense of happiness in the room and I was able to relax and became eager to hear what the stack of papers inside a folder had to say. Brian and Georgia joined us on FaceTime, both Dr. Carpenter and Katie were delighted to see her smiling face.
What followed was a review of a lot of numbers, T cell counts, thyroid function, liver, kidney, height and weight and everything in between. One of Georgia's T cell counts has improved three-fold in one year, her thyroid is functioning normally and in general all of her numbers look really good. Her doctor is particularly pleased with her growth of 14cm in the last year, it speaks volumes - that her body is in fact making up for lost time and that it is healthy enough to do so.
After the review it was time for questions, I pulled out a sheet that Brian and I had put together as well as a "General Long-Term Follow-Up Guidelines for Pediatric Patients" sheet I'd received in the mail. The sheet outlines areas for concern for pediatric transplant patients, I wanted to know where Georgia fell in each of the outlined categories. As we reviewed it, several sections were crossed off, not applicable to her because she didn't receive radiation, sections like (problems with) growth, adrenal glad, and several types of secondary cancers that patients can be at risk for. I again felt a wave of being so, so grateful that she didn't have to endure radiation.
Two years post transplant and she's doing very well, so the question then became, what's next? We have graduated to Children's Hospital clinic visits every three months for the next year. Of patients with JMML who will relapse, 90% of them will do so in the first two years. We are in a very good place but one that still needs to be monitored. Dr. Carpenter said he felt like seeing her annually for post transplant work ups was excessive so he would see us back in 2016 for her five year work up, she will be six years old, I am still struck by how profound this feels.
On Friday we were given permission to shift our focus, now the questions becomes, how? Georgia and surviving cancer has been our life, one we so badly want to move away from, the idea that we are able to perhaps relax and focus on other things is both exhilarating and terrifying. Everyone agreed that this new baby is coming at just the right time, it won't be long until the focus of caring for a newborn and watching Georgia thrive as a big sister will be all that I can see.
After Brian and Georgia were off the phone and we were wrapping things up I looked at Dr. Carpenter and said, "thank you." I said that I know I haven't been the easiest parent to deal with but that I am truly grateful that he has been our primary transplant doctor. I laughed when referencing my infamous blog post where I called him an arrogant ass, we both smiled. I told him that I can see now that the information given in the pre-transplant conference is there to try and prepare parents for what's to come, only problem is that is simply impossible. As far as transplants go we agreed that Georgia has done average to well, I said, "in my wildest nightmare I can't imagine anything worse." He understood and assured me that he appreciated parents like me being involved for the right reasons.
I have sent pictures of Georgia in her Halloween costume for the past two years to Dr. Carpenter and the team, both of which have been printed out and hung up. I know Georgia is special to them but something Dr. Carpenter said before he left struck me, he said, "there's a reason we have her picture hanging up..." for so many people, including her team of doctors, Georgia gives inspiration, to keep going, she is proof that miracles can and do happen.
I can't help but look back at our journey...
http://www.youtube.com/watch?v=31pgyYj2s88
Here are the pictures hanging in the SCCA Pediatric Team office
Georgia enjoying a much deserved cupcake to celebrate!
2016?? I can't believe I don't have to go back to the SCCA until 2016!
