And Then Came The Dawn
Some of you may not be aware that Joseph's journey through AML was not our family's first brush with childhood cancer. Before Joseph ever fell ill, Alexander was found (at the age of 5) to have a brain tumor. I won't go into all the details, but at the time it seemed like the most horrible thing that ever could happen to anyone. There was a 14 hour surgery, a two week hospital stay (that I thought was going to kill me...two weeks seemed like such a long time then. I didn't know any better) and a near death experience with chemical meningitis from the contents of his tumor spilling into his cranial cavity and irritating the lining of the brain. It was a harrowing ordeal that stole Alex's complete glandular function, as his pituitary gland had been completely engulfed by the tumor and had to be totally removed. He continues to this day to be on five pills in the morning, one during the day, three pills every night and an injection of growth hormone six evenings out of seven. Believe it or not, that's it. He's not only completely normal, he's amazing, making straight As and playing sports, participating in Scouts, going to brain tumor camp with other survivors and in general enjoying his life. He sees a pediatric endocrinologist every four months to monitor his growth and hormone levels and he gets an MRI once a year now to check for regrowth of the tumor.
Alex had his MRI last week and today was the yearly visit with neuro-oncology down at Children's Medical Center to get the results. Its always a nail biting time, but particularly has been since Joseph relapsed. It fell out of the category of "unlikely to happen" and into the category of "possible" in our minds. I don't think we will ever be completely at east about it. But once again this year his scan was completely clear, a dark hole where his tumor and pituitary gland used to be but no signs of tumor regrowth at all. He has hit five years since diagnosis now and in another five years will be considered "cured" and will no longer need MRIs or even follow up with neuro-oncology at all. That is unthinkable to me. It actually is frightening to imagine reaching a place where he doesn't have to see the oncologist, to not have at least yearly reassurance that all is well. But its progress. The chance of his tumor ever coming back goes down tremendously with every year that goes by.
Sadly, Children's decided to combine the neuro-oncology clinic with the blood disorders clinic, and we spent the morning absolutely surrounded by bald headed kiddos who were not feeling well, most of whom have leukemia or lymphoma. It was a real punch to the gut, each and every one of them. And yet I feel so oddly at home there. Part of me was so thankful Joseph is not suffering like them anymore. Part of me would give anything to have him back, even if it meant continuing to nurse him along. That would be the selfish part of me. I wanted to rub all their little bald heads so badly. The ones who weren't feeling particularly poopy today continued to amaze me as always with the way they run, laugh, play and act normal, even with tubes hanging out of their noses and chests and masks over their faces. These kids are just so strong and so resilient. My heart ached for all the exhausted looking parents, several of whom found themselves dosing off as they waited to be called back. Been there. Got that T-shirt.
But even with the sad nostalgia, I have to celebrate today. Alexander is thriving. The list of things that usually go wrong with surgery for his type of tumor is long and daunting. We have a handful of pills a couple of times a day and a world where we have to make room for needle sticks before bedtime. But other than that and a few sports restrictions, we live a normal life. He'll always need his endocrinologist for the rest of his life, but there is an unfamiliar light on the horizon, dim, blinking its hope, beckoning me with a joyfulness that makes me tremble inside. I didn't know that light existed. Its the light of a world without oncologists in it. I have not experienced that in well over five years now and I have forgotten what that kind of a life looks and feels like. It is the rise of a new world, a new day for all of us, faint and far away, but already bathing me in hope and in gratitude.
Alex had his MRI last week and today was the yearly visit with neuro-oncology down at Children's Medical Center to get the results. Its always a nail biting time, but particularly has been since Joseph relapsed. It fell out of the category of "unlikely to happen" and into the category of "possible" in our minds. I don't think we will ever be completely at east about it. But once again this year his scan was completely clear, a dark hole where his tumor and pituitary gland used to be but no signs of tumor regrowth at all. He has hit five years since diagnosis now and in another five years will be considered "cured" and will no longer need MRIs or even follow up with neuro-oncology at all. That is unthinkable to me. It actually is frightening to imagine reaching a place where he doesn't have to see the oncologist, to not have at least yearly reassurance that all is well. But its progress. The chance of his tumor ever coming back goes down tremendously with every year that goes by.
Sadly, Children's decided to combine the neuro-oncology clinic with the blood disorders clinic, and we spent the morning absolutely surrounded by bald headed kiddos who were not feeling well, most of whom have leukemia or lymphoma. It was a real punch to the gut, each and every one of them. And yet I feel so oddly at home there. Part of me was so thankful Joseph is not suffering like them anymore. Part of me would give anything to have him back, even if it meant continuing to nurse him along. That would be the selfish part of me. I wanted to rub all their little bald heads so badly. The ones who weren't feeling particularly poopy today continued to amaze me as always with the way they run, laugh, play and act normal, even with tubes hanging out of their noses and chests and masks over their faces. These kids are just so strong and so resilient. My heart ached for all the exhausted looking parents, several of whom found themselves dosing off as they waited to be called back. Been there. Got that T-shirt.
But even with the sad nostalgia, I have to celebrate today. Alexander is thriving. The list of things that usually go wrong with surgery for his type of tumor is long and daunting. We have a handful of pills a couple of times a day and a world where we have to make room for needle sticks before bedtime. But other than that and a few sports restrictions, we live a normal life. He'll always need his endocrinologist for the rest of his life, but there is an unfamiliar light on the horizon, dim, blinking its hope, beckoning me with a joyfulness that makes me tremble inside. I didn't know that light existed. Its the light of a world without oncologists in it. I have not experienced that in well over five years now and I have forgotten what that kind of a life looks and feels like. It is the rise of a new world, a new day for all of us, faint and far away, but already bathing me in hope and in gratitude.
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