I wrote about Gabriella Miller last December when she sparked the public world with not only her cancer diagnosis, but with her exuberant personality, determination and wish to make a difference. This little girl packed spunk, brilliance and compassion into one tiny package of adorable.
I have been diligently following the Facebook page, Make a Wish with Gabriella, throughout the year. It is on that page that I learned about her involvement in fundraising for childhood cancer, the family’s trip to Paris, Gabriella not only authoring a book but also her getting an honorary college degree at Shenandoah University. I was also entertained with her giggling, her poems and many wonderful photos of daily life with her ‘younger’ brother; “he’s 6 years old, but he’s not my little brother – he’s my younger brother! He’s taller and heavier than me,” wrote Gabriella in a blog entry on the Smashing Walnuts Foundation site.
On Wednesday I read that Gabriella’s health had declined and she was at home with the care of hospice. My heart sank as did all who have been touched by Gabriella and her family (to include the 19,268 and growing by the minute followers of the FB page). I obsessively thought about Gabriella and her family almost all day of every day. How could I not? How could any one not think about this bright personality being snuffed out by the beast that is cancer?
The community rallied with hope and prayer. On Friday there was a request on the Make a Wish for Gabriella page to make tissue paper flowers. ” We are going to take all of these flowers and create giant bouquets of hand-made flowers in bright colors, just like Gabriella loves.” And so the flowers bloomed, big, beautiful and bright like Gabriella’s smile and personality.
This morning, I learned that Gabriella passed away last night. Heaviness abounded. Her spark has been darkened, but not extinguished; Gabriella was fierce and has left behind an energy and passion that will continue. She stated in her interview for Truth 365 “if I lose my battle, I want other people to carry on with the war, they’re going to win this war”.
Gabriella, I pray with all of my being that we will continue your war and win it. Like your mom frequently posts “I HATE cancer”. No one should ever have to hear the words “your child has cancer”. I thank your family for sharing you with us; I can’t imagine how difficult that must have been, caring for you and your brother, dealing with personal grief and continuing to advocate, fight and share with all of those who care so desperately about you, your battle and childhood cancer. Gabriella, may your memory be a blessing, Z”L.
Gabriella’s family has requested that those who wish to honor Gabriella make a contribution to her cancer awareness and research foundation at www.smashingwalnuts.com.
I recently began volunteering with a great organization called Bite Me Cancer. Bite Me Cancer was created by Nikki Ferraro who was diagnosed with thyroid cancer in April 2010 when she was seventeen. Nikki wanted the foundation to specifically support teens with cancer since she found this population to be underserved when she was diagnosed. She also wanted her foundation to raise awareness and research funds for thyroid cancer as it is the fastest growing cancer in the United States. In April 2013, Bite Me Cancer had already raised $50,000 to support a 2-year research grant for thyroid cancer.
When Nikki was in the hospital she received a few gifts from nonprofit organizations consisting of items like stuffed animal and crayons. Although grateful for the thought, she didn’t find that this suited her needs or those of other teens. As part of Nikki’s mission, she has created the Teen Support Bags Program that she calls “A Bit of Bite Me Cancer”. Through donations and fundraising, Bite Me Cancer is creating and distributing support bags to teens diagnosed with cancer. The bags include items of particular interest to teens such as an iTunes gift cards, a USB drive, a water bottle, a baseball cap, a journal, a stress ball, a Sudoko book and some items with “Bite Me Cancer Attitude is Everything” logo on them.
My role has been to help find facilities that serve teens diagnosed with cancer. I am contacting hospitals and tracking down the correct staff member to help distribute the bags to the patients. I am definitely getting better at my task, but it can be quite taxing to find that right place, person or contact. As I sat this morning weeding through websites, departments and phone numbers I felt a visceral pang in my stomach. Nikki’s parents and parents all over the country are searching these sites looking for care for their children who have cancer. The overwhelmed feeling I experienced while trying to find the right contact was nothing compared to what these parents are going through.
I have written about another volunteer endeavor pertaining to pediatric cancers, Make-A-Wish with Gabriella, and read this blog religiously about a boy who lost his life to cancer. The courage and pain exhibited by these kids and parents is amazing. I recently read this post by Lexi Sweatpants, a mom who has a child with autism and a child with Down’s Syndrome. She said that she is so tired of hearing people praise her and say things like “G-d knew you could handle this”. She wrote “there is nothing fundamentally different about me than any other mother. I am a normal mother in an abnormal situation. I do what I do because I have to, and you would too if you were put into the same situation.” These words struck me hard; no parent should ever have to hear the words “your child is sick”, and yet they do every single day.
To suddenly become a member of the ‘Parent of a Sick Child Club’ is devastating; I agree with Ms. Sweatpants, these parents aren’t stronger or hand-picked, they put one foot in front of the other and do what they have to do for their children, just like anyone else would do. Nikki’s mom, Sharon Ferraro, told me that she heard another parent put her own thoughts to words, “We don’t know how strong we are until we are forced to be that strong.”
I am glad that I can help in some small way. If a teenager in the hospital gets some cool things in a Bite Me Cancer bag because I made a phone call, it is the least I can do.
You can help too. Join me and the Bite Me Cancer crew at the:
Bite Me Cancer Foundation’s Second Annual Fundraiser and
“Take a Swing at Cancer”
Sunday, June 9, 2013, 5:30pm – 8:30pm
Dulles Golf Center & Sports Park
(21593 Jesse Court, Dulles, VA 20166)
Addendum: I have spent the past two days reading almost every word written about Zach Sobiech. When I wrote this post, I was not aware of Zach, his family or his beautiful music. Now, I can’t stop thinking about them. I would be remiss to publish a post about teenagers and cancer on the day of his funeral without mentioning Zach. May his memory be a blessing and may his family find peace. Laurie