September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
Let me introduce to you my son, Kyle.
Kyle is 16 years-old and not a one-time but TWO-TIME cancer survivor. Kyle is a middle child. Way back when Kyle was 3, his older brother was 5, and his little brother was about to be born, he was diagnosed with Rhabdomyosarcoma. We have told this story in many different ways since then..his point of view and the mom's point of view. We have discussed his first treatment at diagnosis at age 3. We have talked about the drugs, the surgeries, and the side effects. Really, it was just hard. It was very hard for a family to navigate hospital stays with a very sick child while caring for a newborn and new kindergartner. When childhood cancer strikes, this is all too often the scenario. This is when support provided by groups like the Pediatric Cancer Foundation of the Lehigh Valley (PCFLV) is life-saving. Truly, no one has any idea what they are going to need until a complete crisis like this arises. A friendly face at the hospital or card for a birthday truly brightens a day.
Fast forward 8 years from Kyle's first diagnosisâ€¦8 years of being cancer-free. We got well past the 5 year celebration. Everyone was so ecstatic because he beat cancer and chances were so rare it would ever come back again. Well, when Kyle was 11, it did come back. The same cancer, in the exact same place. This time the treatment Kyle would receive was much different. This treatment was described by his doctor to be "grueling, debilitating, and life-altering". And it was.
Kyle and I spent over 70 nights in the hospital. He needed countless blood and platelet transfusions because of what these 5 powerful chemotherapy drugs did to his body. I never truly knew the meaning of blood transfusions until Kyle had a low and dropping hemoglobin due to a mucous infection that ran his entire GI tract. He received over 30 units of blood and platelets that year. We really cannot thank blood donors enough for literally saving his life while fighting cancer. Hair loss, fingernail and toenail loss were minor side effects battled along the way. Again, we were thrown into how to manage not only treatment and hospital stays, but also how to keep the rest of the family going at the same time. To the rescue once again, support and love provided by PCFLV. When Kyle and I drove down to Philadelphia every day for a month for Proton Radiation, we were exhausted and drained and the support provided was lifesaving. Even post treatment and recovering from missing a year or more of school requires support. Kyle will be followed forever by Radiation Oncology to study the effects that this treatment will have on his body later in life. He will have echocardiograms for life to follow his heart function as he received a drug that has a life time maximum dose because of the effects it has on the heart. He is likely sterile due to the drugs on top of the radiation. These drugs are powerful enough to stop the cancer and do a lot of destruction of good cells along the way.
I cannot imagine what it is like to be 16 and have in my past what Kyle does. Life altering it sure is, for the entire family. Still today after 4 more years post second treatment I love an evening to spend with the other parents I have met through PCFLV. The bond that I share with them is like no other. Our community is so blessed to have that support right here at home. Whether it's helping another family navigate the treatment process or supporting a grieving family, no one else understands the worry at 2am when you are in the hospital with a very sick child that is fighting cancer. It is not a place anyone wants to be.
"No one fights alone," they say, and that could not be more true. We were not alone, thanks to PCFLV.
-written by Jill, Kyle's mom