Hi, everyone, it’s Christy writing. Amy started our series of posts earlier today, and I’m second in line to tell you about the cause that’s closest to my heart, because it’s not all about entertaining and decorating, now is it?
The organization I want to showcase was started by someone very close to my heart, my cousin-who’s-more-like-a-
Steph was diagnosed with Ewing’s Sarcoma, a rare form of childhood cancer, when she was 8 and I was 6. Although my aunt and uncle were given the grim prognosis that she was only expected to live 6-12 months, they enrolled Stephanie in a clinical trial that encompassed 21 months of treatment, including chest wall radiation and a four-drug chemotherapy regimen. I don’t think I’d be overstating it if I said that her treatment was the “nuclear option” and probably was as likely to kill her as the cancer itself, but they had nothing to lose. Of all the children in her study group, she is the only one who survived, but she was cured.
Stephanie’s school picture, during treatment
I remember going with Steph to get her “Popeye Juice” (her chemo), and yelling at rude kids at the pool who, seeing her bald head, either made fun of her or mistook her for a BOY (of all the insults she endured, I think this was one of the hardest for her to bear). I also remember treating her exactly like I always did because I was 6, 7, and 8 years old at the time she was suffering through this, and I wasn’t going to let her get away with any special treatment. This is difficult for me to admit now that I’m an adult, and a mom. Forgive me, Steph!
The great news was that the years went by and they were filled with–normal life. Stephanie became a pediatric oncology nurse practitioner, convinced that one of God’s purposes behind her illness and subsequent cure was to give her a unique empathic connection with her young patients. She got married, and was even able to become pregnant and have her precious son–she’d been told that she’d probably never be able to bear children. However, her heart, which had been hit with massive doses of cardiotoxic chemotherapy and huge amounts of chest wall radiation, began to succumb soon after her son was born. Despite medical management, and even heart valve surgery, her heart continued to fail, and she was placed on the transplant list in 2008 as a status IA (life expectancy less than 30 days). Steph said her goodbyes to her husband and son, but again God intervened in her life, and she lives today because of the unspeakably precious gift given to her by a 17-year-old girl and her family.
Steph, her surgeon, and her family post-transplant
Stephanie’s experience isn’t uncommon. I think most people realize that our current cancer treatments–chemotherapy and radiation–can be just as hard to survive as the disease itself, but most people don’t know about the late term effects of those treatments. Some people experience “secondary malignancies”–ANOTHER cancer that is caused by the chemo or radiation (how’s that for a kick in the teeth?), or organ failure like Stephanie’s. Organ transplant is the only chance at survival for those who suffer those late effects. MyHeart, yourHands exists for two reasons: to raise awareness regarding the potential late effects of cancer therapy among ALL cancer survivors and the frontline healthcare providers charged with their care, and to inform the population at large about the critical need for registered organ donors. Together with her friend and co-founder, Judy Bode, who still waits for a new heart, Stephanie knows that just as her heart is not her own, neither is her life.
The Zimmerman Family
Steph wrote a post on her blog to correspond with mine, and you can read it {HERE}. She also wrote an amazing guest post at AnneMarie’s Chemobrain blog {HERE}. Thanks for stopping by, and don’t forget to sign the back of that driver’s license
I didn’t click on the links you provided because I’m guessing the guest post is the one that Steph wrote on my blog. I didn’t click because I’m busy crying at the moment. Reading the story from the outside, from the memories of someone who was there while Steph endured what NO CHILD should ever endure has me with tears flooding my keyboard.
Steph and I met on twitter and she is now part of a group of people whom I CHERISH. As we come to the end of Childhood Cancer Awareness Month, I can think of no better way for you to express your love for Steph than by sharing her story. This needs to be shared FEARLESSLY, by many.
Thank you, Christy for providing the link to the post Steph wrote for me. And thank you for providing a bit more of a glimpse into what life was like when Steph was in her initial treatment…..
With love,
AnneMarie
AnneMarie,
Thank you for your comment! Yes, the link is to your blog and Steph’s guest post. Thank you for giving her a forum to tell her story, and thank you for being her friend and stopping by over here to support her. Sometimes we feel a little silly talking about decorating and cooking when there’s life and death stuff going on out there–all day, every day. But I think the three of us are hoping that we can do some good by spreading the word, far and wide.
Thank you most of all for cherishing my sweet cousin. I do, too!
~Christy
Hi Christy –
Thank you so much for sharing Steph’s story. It has been both a privilege and blessing to of crossed paths with your sweet cousin over the last couple of months. We ran into each other on Twitter – tweeting about similar passions. One thing led to another and now we are working feverishly to make a bigger difference in cancer awareness/transplant awareness (and more) on a number of topics by bringing the voices of myheartyourhands.com and treatmentdiaries.com to reach more in need.
I don’t believe our meeting was a coincidence and I am so happy for her LIFE and passion to help others. Again, thank you for touching the souls of strangers with the story of an angel 🙂
Amy
Amy, thank you for commenting. Steph has mentioned you often, and forwarded me the post she wrote for Treatment Diaries. I’m so glad you two have found each other–and no, I don’t believe it was a coincidence, either!
~Christy