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!
It has been exactly 12 years since I 'first' became a Cancer Mom. It was the day after we celebrated my 38th birthday and a week before my third child was due to be born. We had an early morning surgery for my second child Kyle, who was 3 at the time to fix a "hernia". There were quite a few boys having hernia surgery that morning, seemed like the surgeon was doing Hernia repair day. Things didn't go as planned that morning. All the other parents had been called back to post -op to see their kids. We sat for another hour or so. Finally the Surgeon came out and got on his knee in front of me, and he was sweating. Ok, I thought my greatest fear had happened - he never woke up from the anesthesia. He then said, "Kyle is sitting up drinking an Icee and doing fine." Alright he is alive - I can handle anything now. He proceeds to say that Oncology is coming down and that they found a tumor and based on the quick cell analysis, that it is cancerous. We then met with the Oncologist, who has become our steady friend 12 years later, and the social worker, who handed me about a 32 ounce jug of ice water. I joked with her for years, why the ice water? She said, we thought you were going to go into labor and I couldn't bring you wine. So, the "good news" we were told was that the tumor was on its way to CHOP to be analyzed (who knew tumors got on helicopters??). So, it turns out a week later we were inducing that baby to be born so we could start Kyle's treatment for Rhabdomyosarcoma and we put Chris, our oldest son, on the Kindergarten bus all the same day. That year was a whirlwind of weekly chemotherapy for Kyle, including two different drugs. He made it through like a champ and he started preschool. He went through years of scans every few months as he started Kindergarten. We went past the glorious celebration of 5 years cancer-free. We had this beat. We went on with life.
Fast forward 8 years after he was 3 and diagnosed, and Kyle himself found a tumor in the exact same place as the first time. We went back to oncology and surprising even the specialists at CHOP, Kyle had a recurrence of the exact same cancer in the exact same spot.
This day was the day I became a cancer mom for the "second time". It is far different than that first time. Safety net gone; anniversary celebrations gone. This cancer came back well after it was supposed to. It's an aggressive beast of a cancer and it tried now to ruin my family twice. Treatment for a relapse was more than two times worse than the first time. I can't really put it in better words than our oncologist did when he told me about the protocol that the specialists at CHOP wanted to use to treat Kyle. He said, "Jill, this treatment is going to be grueling, debilitating and life altering - for Kyle and for your family." Great, how do you process that?
We went ahead one day at a time that year. Two VERY long surgeries at CHOP removing tumor and removing and biopsying large numbers of lymph nodes. I had no idea the number of lymph nodes that run along your spine and just how brutal it is to get to those. He had one year of 5 chemo drugs that mostly all had to be given inpatient, some for 5 days at a time. He spent most of that year in the hospital or at the clinic. He had hair loss. He lost his fingernails and toenails. He had nosebleeds and needed constant blood and platelet transfusions. He had infections due to low blood counts that caused him to have sores from his mouth throughout his GI tract. He got nightly shots at home that I learned how to give and was on round-the-clock pain, nausea, anti-depressant and appetite stimulation drugs. Honestly, he had to be heavily medicated so I could get him out the door to go the long chemo stays at the hospital. Who wants to go get tied to drugs, feel like crap, throw up and lose all of your good cells in the process of killing cancer cells? It was a barbaric treatment. He also had 28 days of Proton radiation down at UPENN. All of his medical professionals were amazing and oncology nursing staff is truly a blessing. We made amazing friends that year during our life in the hospital. His brothers somehow survived and grew and succeeded during that year of huge emotions. My sister deserves credit for raising those two brothers that year!
Treatment ends and the very long process of recovery and adjustment have to occur. Unlike when he was 3, Kyle now was becoming a teenager with greater awareness of what the heck just happened to him. I remember turning 13 and thinking I had it tough some times. I don't know how to even help Kyle understand this sometimes because who is his age and has survived cancer not once but twice?? I simply cannot imagine what that is like. He slowly got stronger and grew like crazy and gained a lot of weight back. He got himself pulled together at school, which isn't easy after missing so much. Still to this day things pop up every once in a while, like oh yeah, you missed that part.
Kyle is one strong kid though. He smiles a beautiful smile. He has wonderful friends and he keeps up with some big demands in high school now. We don't have any safety net now. We don't count years out of treatment, because that bubble was burst for us. I cannot lie and say this was at all an easy pill to swallow or to process. I know other cancer moms, actually too many of them and they do understand what my head is like at times. We know, without a doubt, that Kyle has side effects - some big, some small. His drugs carry heart disease risk, a risk of secondary cancers and known infertility. But while we are aware and monitoring these, we are not living focused on these. We all know that every single day is a gift. There is no guarantee for what happens tomorrow. I feared for a long time that grey cloud was coming back. No, we now live every day to the absolute fullest. Wake up and conquer everything you can because we only are given today, and hopefully tomorrow we can do the same thing!!!
-written by Kyle's mom, Jill