“I’m sorry, but your child has cancer.” These are words that would break any parent’s heart. They change the direction of your life forever, and they can happen to anyone.
In November 2010, a doctor said these words to Shelly and Marc Shinebarger about their then 8-year-old daughter Kristen, who they were told has a rare but aggressive form of bone cancer called Ewing’s Sarcoma. In the three years since, Kristen has undergone numerous x-rays and tests, chemotherapy, transplants, and ultimately a leg amputation. I would say “you can imagine how difficult it has been,” but really, I can’t. Perhaps you’ve been there, or know someone who has. Perhaps you do know how hard this is.
My sister-in-law Minna told me about her dear friends the Shinebargers back in 2010, and has kept me updated over the years with Kristen’s peaks and valleys. Last week, she called me up and told me that she was troubled by the fact that only 5% of government funded cancer research is devoted to childhood cancers. She told me she kept looking at her four beloved and healthy children and wondered what she would do if one of them was diagnosed as suddenly and unexpectedly as Kristen was. She also told me she had decided to do her part.
Minna is mostly a private person, eschewing social media like Facebook and Twitter. She’s not one to solicit anyone for anything. And with one brief experimental exception, she has kept her beautiful hair long and thick during the 16 years we have been in-laws. Standing up to her own fears and reservations, Minna has launched a fundraising event called Kristen’s Quiet Strength to raise money for childhood cancer research. She has reached out to her friends and family who participate in social media and asked us to share Kristen’s story and her own. She’s asking people to donate to childhood cancer research. And this Friday, she’s going to shave her head to get people to listen and participate.
I asked her a few questions about all this.
You’ve called your fundraiser “Kristen’s Quiet Strength.” Tell me more about Kristen. What is she like?
Kristen is 11 years old and a very independent girl who knows what she likes, who she likes and what she wants. She has some very good girl friends who have stuck by her side through all of this, and she loves spending time with her white rag doll cat. She is strong willed and feisty, and for the most part she approaches her cancer as an annoying, inconvenient part of her life, but NOT her life. She is a regular, normal little girl who wants others to treat as such. She is constantly getting annoyed with her mother, Shelly, when Shelly has a brief moment of sadness and succumbs to tears in front of her. Kristen will always say, “God Mom, you are so embarrassing!” Shelly and Kristen have been asked on several occasions to speak at fundraiser events, and Kristen always reminds her mom not to cry. She is a very normal 11 year old!
This summer, we were able to spend three days with them at the beach. That was the first time I had been around them since Kristen was diagnosed with Ewings Sarcoma. I had prepared my three boys with pictures of Kristen and her leg and her chemo port, and discussed with them ways to include her in all the fun and to look out for her, etc. Right after we got there, her brother Eric was play pushing her around like brothers do and my youngest son said, “Hey! Hey! Be careful with her. She’s only got one leg you know!” Kristen and her mom both laughed, and that just kind of set the mood for the whole trip.
We never had to wait on Kristen because she moves faster on her crutches than I can run. At the beach, she would drop the crutches and hop to the ocean. Everybody would stare, but she just did her thing. The way she lives her life without inhibitions, the way she adjusts to what life has thrown at her without letting it break her, the way she puts herself out there no matter who is staring….shows her quiet strength. After being around her at the beach, I simply fell in love with her.
What will this fundraiser support? Where is the money going, and how will it be spent?
All of the money raised goes to Alex’s Lemonade Stand Foundation. This foundation was started by a little girl named Alex who was diagnosed with cancer at one, and when she was four wanted to raise money for other children with cancer by selling lemonade. She died when she was eight, but her family and friends continued her desire to help other children by creating this foundation.
My friend, Shelly, recommended Alex’s to me because of how much money goes into actual research to find cures for childhood cancers instead of going to advertisement and business costs. In 2012, ninety cents of every dollar donated went to childhood cancer research. That kind of dedication was what I was looking for. I wanted to help children like Kristen, and they need cures.
What prompted you to put together this fundraiser now? How do you feel it will help your friend Kristen? Why are you doing this?
September is National Childhood Cancer Awareness Month, and Shelly sent me a link listing things people can do to get involved. After looking through it, I came across mothers who have shaved their heads in honor of their children who had lost their hair after chemo. One quote from a mother was, “My hair will grow back. My child will not.” It just slapped me in the face. I have 4 children who as far as I know are healthy, but I don’t know what will happen tomorrow. How could I not be concerned about finding cures for childhood cancers?
Unfortunately, we are not rolling in money, so getting involved in a fundraiser was a good option. I like my hair, and I have a lot of it, but it is just hair. If being crazy brings in some money for research or more importantly raises awareness about the lack of funds going to childhood cancer research, then it is all worth it.
I am fully aware, however, that me choosing to shave my hair is only symbolic. Children who go through chemo do not have a choice about hair loss – from their heads, their eyebrows or their lashes. On top of all of the other fears, surgeries, throat ulcers, loss of fingernails, weak spells, loss of appetite, loss of mobility, hearing loss, loss of limbs, stunted growth, vision problems, and depression, they have to lose their hair which is such a part of who we are. Our hair provides comfort and a shield from the eyes of others. We use our hair to cover up things we don’t like about ourselves and to express our personalities and our moods. For children going through chemo, hair loss is sometimes the breaking point. They may not cry when they are given the news of the cancer diagnosis, but they often can’t hold back tears when they are told they will probably lose their hair. It is simply just too much.
You are cutting your long hair to donate to Locks of Love, and then shaving your head. With rare exception, you always wear your hair long. How do you feel about this? Tell me about your emotional connection to your hair and the significance of not just cutting it off, but shaving it.
I probably won’t be able to give an honest answer until the next day when I get up and look in the mirror. To say I’m not concerned about how I will look afterwards is a damned lie! I wish I was not that vain, but I am. I have been feeling my skull lately to get an idea of how it is shaped and if I have any undiscovered lumps that will be revealed. I also have funky ears that are kind of jagged at the top that I have always been able to cover up with my hair if I was feeling self conscious about them. Now that will no longer be an option. My hair is a part of who I am. It makes me feel attractive and even sexy at times. Fortunately for me, my bald husband likes short hair, and having his support gives me more confidence about it than I normally would have. We will be twins!
For right now, I keep thinking about Kristen on the beach and everyone staring at her leg. No one was ugly or said anything, but she has to deal with that everywhere she goes. I can’t imagine how you ever get used to that. How she handles her leg loss really keeps this whole thing in perspective for me.
You have four children, ages 2-13. How do your they feel about your shaving your head? Are they involved in the fundraiser too?
My three boys think it is kind of weird and funny that I am shaving my head. My oldest two understand more the symbolism of it. My seven-year old son has always been attached to my hair, and it was for him that I kept it so long. My hair was kind of his comfort blanket when he was a baby, so I have been talking a lot more to him about the change so he won’t be upset. Of course, my little two-year old daughter does not have a clue about what we are doing, so I expect that we will have some adjustments to go through with her until she sees I’m still me.
When Kristen was going through chemo and losing her hair, her parents wanted to shave their heads to show her their support, but she absolutely did not want them to do that. The hair loss was something I think she did not want to be reminded of. It is possible also that with everything about her body changing, she needed her parents to still just be her parents.
During the fundraiser, the boys will be selling lemonade and treats in the parking lot, and they have also spread the word at their schools by talking to teachers and their friends about what is going on.
How can people help?
You can visit my event page at Alex’s Lemonade Stand and donate online. So far we’ve raised $2,200 out of our $5,000 goal! Every little bit helps, even $5, if that’s all you can do. After all, it must be worth $5 to see my head shaved! You can also learn more about childhood cancers. Here are some more facts about Ewing’s Sarcoma:
- Ewing’s Sarcoma is a bone and soft tissue cancer that primarily affects children and young adults between the ages of 10 and 20. It often manifests during puberty, when bones grow the most.
- Ewing’s Sarcoma begins when changes in cell chromosomes occur. The reason for this genetic anomaly is unknown, but it is not hereditary, and is very unlikely to reoccur in different members of the same family.
- There are few symptoms of Ewing’s Sarcoma, though localized bone pain (persistent or intermittent), swelling, or fever may be present.
- Though tumors caused by Ewing’s Sarcoma can occur anywhere in the body, they usually present in the arms and legs, pelvis, or chest. These tumors often metastasize, or spread, to the lungs and other bones, and can affect the muscles and soft tissue around the area where the tumor is located.
- Because Ewing’s Sarcoma is so likely to spread, treatment almost always occurs across the patient’s entire body, even if the tumor itself is very small. The disease is commonly treated with chemotherapy, surgery, and/or radiation.
Minna’s event is happening this Friday, September 27. Please support her and help fund this important research!
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