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LYRISSA MARIE BRAY
"Hope is the thing with feathers
That perches in the soul
And sings the tune
Without the words,
and never stops at all."
- Emily Dickinson
Welcome to Lyrissa's web page. It has been provided to keep people updated about Lyrissa's progress battling neuroblastoma. Lyrissa was diagnosed with High Risk, Stage 3 or 4, N-Myc Amplified Neuroblastoma on January 5, 2005.
Journal
Tuesday, January 5, 2010 1:41 PM CST WE MADE IT FIVE YEARS!! I can't believe Lyrissa is at the five year mark, when the doctors can cautiously use the word "cured!" It is truly a miracle!
Today is a special day for us, but we're not really doing anything in the way of celebrating. We put up our little tree with the angels on it that were made for us by various people in different parts of the country (Angels of Hope), and sent to us when we were up at CHOP. Lyrissa didn't want to bring anything special to school, like cookies or pizza, so other than McDonald's pancakes, it's shaping up to be a pretty ordinary day! But that is what is GOOD about it; I will never knock ordinary after the chaos that our lives were for so long.
Of course there are no "magic" dates or guarantees. Lyrissa will always face challenges - her hearing loss, risks from high levels of radiation from scans, late effects of chemo, some of which are not known yet, infertility, and higher risks of secondary cancers. But all of that is okay, just to have her with me. Although January 5 seems like a day most would want to forget, for me it's a day to celebrate - one more year with Lyrissa. After hearing the grim statistics upon diagnosis and the fight for her life during transplant, I will always celebrate having yet another wonderful year with her in my life.
This journey has been unbelievable. I have come to appreciate the things in life that are IMPORTANT and not to sweat the small stuff. I am truly grateful for all the wonderful people who have supported and stuck by us (even when that was not easy (our poor social worker, wonderful Dale, for example - LOL!). Please, please continue to pray not only for Roo, but for a cure for all childhood cancers. No child deserves such pain and suffering and no families should ever have to watch their kids hurt so much.
Well, as for an update, our house has been very busy come midnight the last week or so. First Santa, then New Years Eve, then the tooth fairy came on Saturday to retrieve Roo's seventh tooth she lost! Then last night, she was back to claim Nicholas' first tooth! That little sweetheart already lost a tooth and he's only four!!
Five years ago this week, Lyrissa was getting central lines in her chest, chemo was beginning, and we were being trained on administering painful, nightly shots in her legs. We were introduced to the terrifying world of mouth sores, hair loss, and tube-feeding. This week Lyrissa will get her new glasses, attend her friend's baptism, and get to buy pizza on Friday. THANK YOU GOD.
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