How NOT to enjoy the Holidays
Long time no post.
Primary reason was a really ugly holiday surprise for our family: my son was diagnosed with Neurofibromatosis, Type II, a very rare (1 in 50,000) genetic condition. What it means is that he has several tumors in his brain, scores of small tumors on the nerves along his lower spine, and one tiny one in the spinal cord. It’s a dominant genetic trait, so any children he’d have would have a 50% chance of having it and it only gets worse with every generation. The tumors usually start in the acoustical nerves and NF2 people are often completely deaf before they turn 30; Alan has lost maybe 40% of his hearing on his left side. He also has some weakness in the nerves on the right side of his face; when he blinks, his right eye only half closes.
Treatment involves either physical surgery and/or fractionated stereotactic radiation (FSR); odds are that the nerve involved has to be sacrificed during surgery. FSR gives some better odds of retaining neurological function, but some chance of not killing the tumor. The tumors are- fortunately- slow growing and the entire corral of doctors (six, so far, with one to go) believe the risk of surgery should wait until more symptoms force the issue.
How does one deal with such emotionally when your only kid has such a dire long-term diagnosis? It ain’t easy, but I had a bit of an advantage between being raised in a medical family and my eight years in the medical labs. You focus on the short term and those things you can definitively do something about; testing, diagnosis and opinion gathering. You can take comfort in the things that aren’t a problem: The condition is not painful, nor a short-term threat to life. My son’s current symptoms are not life changing.
Alan is being pretty much stoic as I try to be about this (for his sake). His mother not so much so; she’s never had to deal with serious medical issues herself (while I’ve had my Dad die of cancer). Se wants to try all sorts of outlandish alternative medicine crud. Alan and I humored her for awhile; we even went in for ‘Bio-resonance’ testing. (That’s a story that belongs on my humor blog.) But Alan put his foot down; he’s not willing to let his Mom impose foolishness on his for false hope for a ‘miracle cure’.
So on we march, because that’s all we can do. This same holiday weekend, we got another lesion in mortality. While Alan was in New York visiting his cousins, shortly after finding out about his condition, he met the best friends of my sister-in-law’s family just before they left for a California visit. Two days later, the whole family was killed in a head-on collision with a tractor trailer. We thought Alan should come home, but he decided he wanted to stay and let them try to all act as normal teenagers to adjust to it all.
Like I said, a really miserable holiday and it’s hard to get in a writing mood again.
Primary reason was a really ugly holiday surprise for our family: my son was diagnosed with Neurofibromatosis, Type II, a very rare (1 in 50,000) genetic condition. What it means is that he has several tumors in his brain, scores of small tumors on the nerves along his lower spine, and one tiny one in the spinal cord. It’s a dominant genetic trait, so any children he’d have would have a 50% chance of having it and it only gets worse with every generation. The tumors usually start in the acoustical nerves and NF2 people are often completely deaf before they turn 30; Alan has lost maybe 40% of his hearing on his left side. He also has some weakness in the nerves on the right side of his face; when he blinks, his right eye only half closes.
Treatment involves either physical surgery and/or fractionated stereotactic radiation (FSR); odds are that the nerve involved has to be sacrificed during surgery. FSR gives some better odds of retaining neurological function, but some chance of not killing the tumor. The tumors are- fortunately- slow growing and the entire corral of doctors (six, so far, with one to go) believe the risk of surgery should wait until more symptoms force the issue.
How does one deal with such emotionally when your only kid has such a dire long-term diagnosis? It ain’t easy, but I had a bit of an advantage between being raised in a medical family and my eight years in the medical labs. You focus on the short term and those things you can definitively do something about; testing, diagnosis and opinion gathering. You can take comfort in the things that aren’t a problem: The condition is not painful, nor a short-term threat to life. My son’s current symptoms are not life changing.
Alan is being pretty much stoic as I try to be about this (for his sake). His mother not so much so; she’s never had to deal with serious medical issues herself (while I’ve had my Dad die of cancer). Se wants to try all sorts of outlandish alternative medicine crud. Alan and I humored her for awhile; we even went in for ‘Bio-resonance’ testing. (That’s a story that belongs on my humor blog.) But Alan put his foot down; he’s not willing to let his Mom impose foolishness on his for false hope for a ‘miracle cure’.
So on we march, because that’s all we can do. This same holiday weekend, we got another lesion in mortality. While Alan was in New York visiting his cousins, shortly after finding out about his condition, he met the best friends of my sister-in-law’s family just before they left for a California visit. Two days later, the whole family was killed in a head-on collision with a tractor trailer. We thought Alan should come home, but he decided he wanted to stay and let them try to all act as normal teenagers to adjust to it all.
Like I said, a really miserable holiday and it’s hard to get in a writing mood again.
posted by Mike O | 10:14 PM
