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Against All Odds My name is Rachel Crowthers, welcome to my web page! What is it about? Well, I am a long-term survivor of Stage IV Neuroblastoma, and I have created this page so that people whose lives are touched by Neuroblastoma may be encouraged, and so that we may all stay in touch with one another.
My battle with Neuroblastoma began in 1986, when I was 8 years old. I began having pain in my right leg,and in March 1987, after nearly a year of fruitless doctor visits, a tumor was located in my spine which turned out to be Stage IV Neuroblastoma (NBIV). My parents were told I had no more than two years to live. Because the initial tumor was in my lower spine and the surgeons had to cut some nerves to get to it, they said I would not walk or grow.
For the next three years I was in and out of Doernbecher Children's Hospital in Portland, Oregon. In March '87 the doctors removed the initial tumor from my lower spine. Unfortunately, they were only able to get 95%, and it had metastasized to my bone marrow, so I started chemotherapy- alternating 72 hours of VM-26 (teniposide) with a 5-day cocktail of DTIC (dacarbazine), Cytoxan and Vinchristine every 4 weeks. Despite the nasty chemicals, the tumor started to grow again and several tumors were also located in my right lung. In October '87 the doctors removed 4 tumors from my lung, and I underwent radiation to my spine. I continued the chemotherapy as well, for a total of 27 rounds.
On January 17, 1990, I WALKED out of Doernbecher's for the last time as a patient. I beat the odds, I am a survivor. I am now 31 years old, with no evidence of disease nor relapse since I finished treatment!
Journal
Friday, July 24, 2009 3:05 AM CDT No news is good news, eh?
22 years since diagnosis, 19 years NED, 7 years uninsured (eep!) and thus untested (double eep!), but I'm feeling good so I'm not going to worry overmuch. My biggest complaint right now is sleep issues. I've been a night owl ever since the "chemo days" but it's gotten worse as the years progressed. I seem to be unable to sleep at night anymore, if I try to go to sleep before 10pm I wake up at 10:30 on the dot and can't get back to sleep until 3am. Wonky internal clock!
What have I been up to in the last year or so? Quite a lot and hardly anything, LOL. Mom had her leg amputated last April (see her story at www.caringbridge.org/visit/susanguza). I've been living with her and helping out since she's now wheelchair-bound.
In September I left my daycare position after 4 years because I have trouble sleeping at night (notice the hour on this entry?). I wanted to find a nighttime job but the economy tanked and Oregon was one of the states hit hardest. So I've been filling my time with babysitting for friends and my sister, taking care of Mom, and trying out new hobbies so I don't go stir crazy! I learned to spin my own yarn, knit socks, and opened an etsy shop (chibiami.etsy.com) to sell crocheted pet toys, among other things.
I recently made contact via Facebook with Sarah Marr, a girl I went to Camp Ukandu with for 4 or 5 years. Camp Ukandu is a summer camp in Oregon for children with cancer and their siblings. My sister went with me the first year, and my brother each year after that. There was also a family camp hosted by Candlelighters each summer. Sarah and I were inseparable at both camps- we even swapped our hand-made nametags a couple years, good times... If my employment allows next summer I am going to apply to be a Camp Ukandu counselor- who better to connect with kids than someone who's been through it?
Last fall my 5-yr-old niece Hadleigh and I both cut our long hair and donated it to Locks Of Love. I cut off 14 inches, she gave a whopping 18! Incredible that a child can have that much to spare, and still have enough left to be shoulder-length!
On a sad note... six years ago my friend Justine's son Lance died of NB. He was 13; diagnosed late in life (for NB) like I was, his death hit close to home. I kept in touch off and on with his mom Justine, but more off than on. I was heartbroken to learn that 5 years after Lance died, Justine couldn't bear to live without him anymore and took her own life. I'm not 100�ertain that they are with God now, but I fervently hope so. After all that they both suffered, I really hope they are in the embrace of the Lord, He who Comforts every heart and wipes away all tears.
I have a friend who went through treatment for leukemia at the same time I was on chemo, and for years afterward he did everything in his power to forget what he'd been through, to live as though he'd never had cancer. Unfathomable. The cancer experience shapes who we are and where our lives take us. Admittedly, I think of it less and less this far out, I've even been known to miss my dx anniversary (but never my NED anniversary), but it's never terribly far from my mind. All I need is for my niece to run her fingers over the scar on my back and ask why it's "bumpy" to bring my own mortality crashing down around my ears.
People say I'm brave to have survived all of this, but I think as far as children are concerned, it's not as much bravery as it is an overabundant joy of living. Someone told me I was going to die, someone else told me the icky medicine would help me live, and I chose life. I had way too much to do to let Neuroblastoma take me away! There were mudpies to make, pictures to paint, rainbows to chase and on bad days, dolls that just needed to be cuddled with. I haven't changed much. Perhaps the only thing that has changed is that I know the science behind rainbows and that as fast as I run I'll never catch one. But mud washes off so I still play in it. My paintings are a bit more refined than they were 20 years ago, but I still paint. And Woofers, the stuffed dog that always went to the hospital with me, is still on my bed and ready for a cuddle when I'm feeling down.
Let us all take a page from the wisdom of children and live for today. And let's all take a page from the wisdom of survivors and let our experiences shape who we are. Humility, joy, thoughtfulness, hope, love, and an unwavering faith in the strength of God- these are what I brought away from my battle with NB.
Read Journal History
Hospital Information: Treated at:
Doernbecher Children's Hospital
Portland, Oregon
Links: www.nbhope.org Children's Neuroblastoma Cancer Foundation
www.lunchforlife.org Give up a Lunch to Save a Life!
www.chibiami.wordpress.com My knitting/crochet/spinning blog
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