My life after St. Baldrick's

It was just after Christmas of 2002 that we discovered my niece was very ill. Her parents thought it was just a stomach bug that kept her couched for a week. But when Ashley appeared gray and limp and refusing to eat her chocolate treats that Santa left her, we knew something was wrong. After taking her to the emergency room my brother and his wife were told Ashley has Leukemia. She was immediately taken to a medical center for treatment.

Ashley was only three years old, but she lived several months of her life in the hospital. She endured three surgeries and still wears the scars along her abdomen. The first surgery, which nearly every kid with cancer endures, implanted a Picc IV line that administers chemotherapy directly to her heart. We thought that would be the worst. The second surgery was to remove her appendix as it became inflamed from the amount of chemicals coursing through her body. The third and last was the most invasive and the most difficult to watch her heal from. She was surgically cut straight down the middle of her abdomen so doctors could open her up to repair a hole that had worn through her colon- a side effect of the chemo.  The medical center treating Ashley is also a teaching hospital which means the surgical area has a viewing bay. My brother stood over his baby girl, helplessly watching afar as doctors work to repair her from the inside. Did I mention she was only a toddler?

I get this is totally graphic. I get that some of you may stop reading right here. Please don’t. On the eve of Childhood Cancer Awareness Month, it is important for you to know the truth of what life looks like for kids with cancer. From newborns to teenagers a child is diagnosed with Cancer every two minutes. Every single one of them will have a different experience. Maybe they won’t need extra surgeries, or need to learn how to walk again, or fall behind their classmates at school. Maybe their journey will be easier, or maybe it will be worse. The one thing they will all have in common is that the powerful chemo killing their cancer will also cause them to lose their hair.

Before we even knew about St. Baldrick’s my brother decided to shave his head when Ashley lost all of her hair. It was an act of loving solidarity. She wouldn’t have to be the only one bald, they could be bald together. Today, my family fully supports the brave ones who shave their heads to raise money, awareness and support for kids with cancer.

The U.S. government designates less than 4% of funds toward researching a cure for childhood cancer. And pharmaceutical companies designate even less, because childhood cancer drugs are not profitable. As a result seven children a day die from cancer. It happens every single day you wake up. St. Baldrick’s is one of the few Pediatric Cancer fundraising organizations where proceeds are streamlined directly to research teams. They raise millions of dollars each year to help find a cure for pediatric cancer, and less invasive treatment options.

How do they raise millions? Their unique platform is simply signing people up to “Brave the Shave.” People create a team, and ask donors to sponsor them at a head shaving event. They show up in firehouses, gymnasiums, rec centers, schools and VFW halls across the country to brave the shave together with other shavees. It takes a lot of courage to choose to lose your hair. Kids with cancer don’t get a choice.

How do they spend those millions? St. Baldrick’s provides grants to fund every stage of research, from ideas in the lab, to clinical trials to fellowships. Eighty percent of children treated for cancer stand a greater chance of side effects that follow them for life. While much of the research is focused on a cure, it is also focused on preventing lifelong damage caused by chemotherapy, surgeries and radiation.  Through collaborative efforts, St. Baldrick’s supports the next generation of oncologists, helps children not just survive, but thrive; and funds necessary research.

How can you help? Find a local event near you. Just go and be inspired. If you are not ready to brave the shave donate to someone who is. Create a shave event in your hometown, volunteer your time and talents as a barber, or just help spread the word. St. Baldrick’s makes it super easy to get started and provides you with all the marketing an organizational materials needed for success.

Why is St. Baldrick’s so important to my family? Because in the 1950’s every child diagnosed with cancer died. Today 90% of children diagnosed with the most common cancers, like Ashley’s Leukemia, will survive. St. Baldrick’s is leading the way in researching cures for childhood cancer. In 2016, St. Baldrick’s funded research that developed the third (in existence) FDA approved drug treatment for pediatric cancer. It is the first drug treatment breakthrough in twenty years and it will help treat children with high-risk neuroblastoma. Every time someone donates a dollar to St. Baldrick’s, or braves the shave in support, we are confident the money is being spent wisely and with finding a cure is at the forefront.

Brave the Shave at St. Baldrick's

My niece Ashley is now a 14 year cancer survivor. She has worked hard to overcome the lingering effects of her cancer treatments. Most impressively, she has raised thousands of dollars in her young life to provide comfort and care, and to fund a cure for other kids living with cancer. In March 2016, Ashley braved the shave herself, just before her prom and graduation. She willingly gave up what most girls struggle to, her golden curly locks of hair. Her boyfriend, friends and family shaved right alongside of her in solidarity and together contributed over $2,000 to pediatric cancer research.

St. Baldrick’s will forever be a part of our lives. We believe in giving other cancer kids a fighting chance and a chance to survive.

The Whatever Mom is a twin mom learning to let go of perfection. She shares her real life struggles with parenting through her blog and contributes her time and talents as a writer to Hudson Valley Parent and Masshole Mommy. When she isn’t writing you can find her chugging coffee, folding laundry and not judging other parents. Don’t forget to subscribe via email so you never miss a blog post again! You can also find her work featured on Mamapedia and The Novice Mommy.

This is not a sponsored post and no financial compensation was received. I wholeheartedly believe in the mission of the St. Baldrick’s Foundation and would love for you to share this post with as many friends and family as you can! Use #gogold to help kick off Childhood Cancer Awareness month and spread awareness about Childhood Cancer. 

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29 Comments on Why Going Bald Matters in My Family

  1. Ashley is amazing and a true inspriation, as are you Whatever Mom for all you do to to fight against childhood cancer! Thank you for this heartfelt and powerful post.

  2. I went to Penn State and every year they hold, THON, the largest student-run philanthropic event in the world. The money goes to the Four Diamonds Fund that helps find a cure for pediatric cancer, so whenever I see stories like this, I always stop, read and get a bit teary eyed. What an inspiration Ashley is!

    • Kait, my daughter lost a dear friend to cancer as a young child. 12 years later, as a senior at Penn State, she danced. Now my son is working toward when he dances for the kids, and for a cure. Both The Four Diamonds Fund and St. Baldricks are truly exceptional and putting so much into research and truly helping to find a cure.

    • Yes! A local mom friend of mine has two children who both attend Penn and have thon experience! I have supported them that he last couple of years. Amazing event and organization!

  3. There mission is amazing and so personal to your family. It’s such a beautiful and heartfelt piece that you wrote! I’m passing the name along.

  4. God this made me cry noone should have to go through cancer, but to hear a toddler suffering it breaks my heart. She is beautiful and its amazing that she has raised so much money for others and I think its great that she braved the shave. Good on her and you for raising awareness x

  5. What a scary thing to watch your niece go through!! I would have to say going bald would be important as well to my family after going through that. Sounds like an amazing organization!

    • They are amazing! They have no corporate overhead so majority of the money they raise goes directly to researching a cure. Please feel free to pas along to anyone who wants to get involved. 😀

  6. I love this story! Childhood cancer is horrible and I love that you supported your niece in this way. I’m a cancer survivor and the night my Hubby had to shave my head, he finished shaving me and then shaved his own head. It really speaks volumes to the person going through cancer to see others doing that FOR THEM.

  7. What a brave young girl. Cancer is so hard to watch anyone go through, but I have always found it even harder with children. I so admire what she is doing for other. It takes a special person to go through such an experience and be so passionate to help others at such a young age.

  8. This is so hard to read but beautiful at the same time. I think doing something in solidarity with one you love is so powerful.

  9. This is such an inspiring story! I could only imagine what it would be like to have something like this going on and to remain in good spirits.

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