On Monday Georgia had her three year post transplant work up, our first at Children's Hospital. Our regular oncologist is out right now so we saw a doctor that we haven't seen in quite some time, she now spends most of her time at The Ben Towne Center for Childhood Cancer Research.
The appointment itself was less than monumental, the clinic was quiet, our appointment was at 4pm so the waiting room was almost vacant. When we saw the doctor she asked how we'd been, remarking at how much Georgia had grown. She said her labs looked good, her thyroid test was still pending but all that she had was normal. So, here we were, three years later and I said, if I remember correctly, three years is a significant milestone for a JMML diagnosis, the doctor smiled and agreed. She said that the chances of Georgia's leukemia returning are basically nil. She said, "we now shift our focus to watching her for transplant related issues which will be followed by the Access Clinic" ... known to some as the survivorship clinic. I clarified, "so you will watch her primarily for potential issues from transplant and watching for cancer kind of drops to the bottom of the list?" She said, no, it drops off the list, the concern for her leukemia returning just isn't there anymore." My mouth opened but nothing came out, nil. Three years seemed like 10 lifetimes at certain points are here we were, this moment I'd thought about for so long, knowing we could achieve it and I felt... numb.
We went on to talk about potential concerns, in a few months Georgia will likely have an echocardiogram, one of the chemotherapies she received can be hard on your heart, when she is old enough she will have a bone scan to see if her bone density has been effected, she will have pulmonary function tests to look for lung disease and the list went on.
It's a tricky thing, when you have lived in fear for so long it's hard to feel joy about a situation that is so incredibly painful. We haven't completed the marathon, we just moved to a less intense course. I long for the feeling of being done and the truth is we never will be.
That night, I was exhausted and couldn't sleep, tossing and turning, wondering why didn't I
feel more about this momentous occasion. Happy just wasn't there, am I
happy that my daughter didn't die? it just didn't fit, I'm thankful, grateful, humbled... As the week went on I struggled to figure out my lack of emotion, I settled on the fact that I had to turn off feeling much of anything over three years ago as a means of survival, turning that back on will take some practice.
Wednesday rolled around and I left a message with the doctor to check the results of Georgia's thyroid test. A short time later the phone rang, one of the test came back abnormal and there is a concern that receiving such high dose chemotherapy has damaged her thyroid. I could feel my stomach tighten and my mind sense the need to suck it up. I remained calm and asked questions I thought I should.
I spent the rest of the day crying or fighting back tears, this is why I felt numb, don't let your guard down, there's always something around the corner. I am so profoundly sad about what Georgia has gone through, and more than anything I want her to be free of doctors and tests and any damage this process has done to her poor body.
For now, we wait and retest her thyroid function in a month, hoping that we will not become patients of the Endocrine Clinic. For now, I let Georgia be my joy in all of this, the incredible resilient being that she is. Someone commented a while ago about Georgia's strong will, saying that she has something very profound, she has the will to live.
Here is a look back...
http://flipagram.com/f/GHmBY6s5B2
