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May seems an awful long ways away right now, as I look out at this winter wonderland, layer upon layer of snow and ice covering every visible surface. But May is the next time we’re scheduled to go to the hospital. Three months away!
Everything yesterday was fine. His chest CT was clear and the abdominal ultrasound showed no changes from the last time. His creatinine held steady at its new December low and his hemoglobin jumped up in a big way. The hemoglobin thing is pretty significant, here’s the medical scoop: Chemo obviously destroys blood cells and the body’s ability to produce new ones is often slower than a scheduled chemo regimen, leading to inevitable blood and platelet transfusions during treatment. Once chemo is stopped, the patient’s bone marrow should slowly but steadily produce new blood cells and “refill the coffers,” until they reach a normal level. This has happened for Austin in terms of white blood cells and platelets and neutrophils but not for red blood cells, as measured by his hemoglobin. We believed the reason for this was twofold: 1) the kidney produces something called erythropoetin which makes red blood cells, so we assumed his wasn’t doing that (or wasn’t doing it quickly enough) and 2) he was spilling red blood cells into his urine, again a sign of weakened kidney function.
So we’d been planning on blood transfusions well into the future, as often as he needed them, which last summer was every four to six weeks. Well, his last transfusion was in the end of August! In November and December, his hemoglobin was low but not quite low enough to necessitate a transfusion. And yesterday, it had risen by an entire point to a number that is two-tenths of a point away from normal!
That kidney is indeed recovering.
Even his blood pressure was down, always a huge relief. So we carry on, three more months with no hospital visits, three more months of health and growth and recovery. Working kidney, cancer-free … what more could we ask for?
Springtime would be nice!
I just got an email from our oncologist (complete with smiley face) with an updated report from the radiologist reviewing Austin’s scans. She was able to go back and find some older chest CTs that had been done without sedation and she determined that these two tiny nodules have been there as far back as March of 2009. That is enormously good news because it means they’re not new (and anything new in the cancer world is always bad). They haven’t changed or grown or done any harm in all that time. . . and therefore they shouldn’t.
Her report ending by saying the findings are “unremarkable”–doctor speak for “nothing to worry about.” Of course, if you ask me, it all seems pretty remarkable.
Last Tuesday, we went to the Natural History Museum and I took some photos of the boys sitting on the stone bear outside, right where we’d taken pictures last March. Check out the difference:
More hair, same big smiles
To see these images of my boys sitting in the exact same spot, just eight months apart, makes me appreciate just how far we’ve come. A long long way.
So long, in fact, that it’s time for more scans. This Thursday, he’ll have his usual monthly labs and abdominal ultrasound, followed by the every-three-months chest CT. It’s always a little unnerving to go through these tests. I don’t actually believe that anything bad will show up, but I can’t help but play out the scenarios in my mind. I always imagine the conversation with our doctor, the heavy “Can you talk?” on the phone, the stunned silence, the devastation, the resolve to fight yet again.
Or the opposite, which is what we should get, better get: The happy news, no changes, all clear (or mostly clear, which would be good enough). The relief, one month closer, another small victory to celebrate. A long way. We’ve come a long, long way.
Today was Austin’s last day of school, an end to his first year of preschool that feels light years away from its beginning. I am so proud of him and he is so proud of himself, convinced that today’s ice cream party proves he has accomplished something great. And he has: he continued going, with impressive consistency, even when he’d already had radiation early the same morning or had just finished chemo the day before. He went on field trips when his low hemoglobin made him cold and stayed for Lunch Bunch when there was nothing good for me to pack him, except bland, low-sodium, low-phosphorous sandwiches and a Tums floating around in his lunch box.
But he did it. He made friends and he made art projects, he had movement class and he had library, he proudly guided us around the building to find his paintings for the annual evening Art Walk. He belonged to something, was a welcome and valued member of that class even when he was absent for weeks on end. Nobody ever forgot him when he was gone, thanks to the daily “We wish Austin well” chant led by his teachers. And when he returned, his little classmates treated him with kindness and also, thankfully, with complete normalcy. They never tiptoed around him, afraid of what he could or couldn’t do. To them, he was just another kid, without hair and with a sock covering up the tube on his arm, but just a kid nonetheless.
So he did it. One year down, nineteen to go.
Oh, and his chest CT was clear and there were no noted changes from his last ultrasound so all’s good. Bring on summer.