Ivy's Thread
Thought about posting something in the qigong/medicine thread about this, but since some were kind enough to inquire and send good wishes in the quit smoking thread I thought this might be worth a separate vein that I can track more easily.
My daughter, Ivy, is home after a nearly a year "outside," as we say in Alaska. She has been a patient at Seattle Children's Hospital for all this time. After a year of suffering a life threatening and undiagnosed illness she eventually developed a peripheral brain tumor that could be biopsied. It was medulloblastoma, a common form of childood brain cancer, but her symptoms presented in such an odd fashion that the medicos had no clue. We were calling it "Ivy's disease."
After carving a chunk of muscle out of her thigh and a three-month wait for results, the tests for mitochondrial disorders came back negative. I was relieved, sort of. Her oncologist said that what he saw on her brain scans were lesions, but he was "95% certain" that they were not tumors. Her scans were sent all over the country in hopes that someone had seen something like it. Lyme disease? Probably not but the tests aren't reliable. Thyroid malfunction? Some felt certain, but that turned out to be a symptom rather than the cause. No treatment for over a year for anything but secondary symptoms for my thirteen-year-old girl.
Then, last September, we got a call from our local hospital where we had just completed another round of imaging. "Seattle wants Ivy there tonight." I had never been so afraid for my child. The Lear jet showed up three blocks from my house. The handsome young medics flirted professionally with Ivy and made her smile. My wife, Danette, got on board after they strapped Ivy down and started her IVs, (she still rolls her eyes when anyone mentions Ivy's IVs). That was the last time either of them saw their home until the day before yesterday.
The latest tumor now proved to be operable. A little mass just behind her left ear. Then the waiting. You parent's know what it's like. Ivy was relieved to finally have a diagnosis. Her mom and I were stunned, not least when hospital staff members blurted out "medulloblastoma" during rounds, not knowing we had not been consulted about the results. The rest is inoperable, too deep. But Ivy was admitted to a clinical trial of a new proceedure involving a course of radiation + chemo followed by another course of chemo.
Her neuro-psych exam last week showed that her mental faculties are back and appropriate for her age, slightly better than average in language and math concepts, as we might have expected. She's a poet/songwriter/ singer and artist. Everyone was amazed that the chemo didn't damage her hearing. She still hears like a bat. I call her "Lum Gwai" for her notorious ability to spy on conversations. Most of all, the docs were amazed at her strength and her lung capacity even when she lost 30 pounds and looked like a walking stick (except she couldn't walk, but you know what I mean).
So here's the thing: Ivy has been a gung fu girl (didn't the group Blondie do a song by that title?) since she was three years old and has been able to stagger me with her kicks since she was nine. She's 15 now--spent her birthday in the hospital--and still shows that amazing strength even when she can't walk or talk normally. I asked Ivy to continue doing her noi gong whenever she had the strength. Her mom called me up a few months ago to report that she walked into Ivy's room and found her standing on one leg doing slow-motion exercises. So I think she kept at it.
Sorry for the rambling letter, but this won't mean much unless you know her. I'll try to update this once in a while, with her permission, of course and see if I can be objective about her progress. I'll let her rest for a couple of days and then Ivy will join me for my next internal class on Monday.
Be well.
Last edited by jdhowland; 07-24-2010 at 12:24 PM.
Reason: typo
"Look, I'm only doing me job. I have to show you how to defend yourself against fresh fruit."
For it breeds great perfection, if the practise be harder then the use. Sir Francis Bacon
the world has a surplus of self centered sh1twh0res, so anyone who extends compassion to a stranger with sincerity is alright in my book. also people who fondle road kill. those guys is ok too. GunnedDownAtrocity