We never expected our surprise visit to the “Family Quiet Room” the day we took Jack to the E.R… It was a spring day of breathtaking splendor, a stark contrast to the breath stealing walls we would later face… Nothing of that day’s beauty prepared us to hear the word: CANCER.
While attending our city’s annual “Touch a Truck” event, a dream for a boy like Jack, Jack misperceived the depth of a stair and took a stumble. “Owwww!” he exclaimed, immediately grabbing his left shoulder and wincing in sudden pain.
Throughout that day, and the following, Jack complained intermittently of pain in his shoulder, causing us to wonder if it had become dislocated in the tumble. Later that day, we would surely know, as he awoke from a nap with wrenching wailing and screams.
After what felt like hours begging for pain medication and shoulder X-rays, we were escorted to the “Quiet Room.” “Jack appears to have a tumor in his shoulder.” The normally harmless yank to his arm had caused a stress fracture in the area, already silently brittle from advanced disease. In our shock and dismay, we bolted that suffocating room, and ran the halls to our boy. We would roam those halls in terror for the next 17 days, as we embarked on the most difficult journey of our lives.
The days that followed our admission to the hospital seemed to blur by in equal measures of breakneck speed and agonizing wait. Scan upon scan confirmed the most dire of circumstances for our young boy: Stage IV Neuroblastoma, high risk for relapse, unfavorable histology, N-Myc amplification, extensive bone-marrow disease, rare lesions in his lungs, and two large — possibly too dangerous for surgery — tumors on his left kidney, and within inches of his heart. We were terrified.
The plan for treatment, which would include 5 rounds of induction chemotherapy, tumor resection with open-chest and abdominal surgeries, stem-cell harvesting, two excruciating and life-threatening rounds of high-dose chemotherapy followed by stem-cell transplants, radiation treatment, and 6 months of oral chemo (that we were certain a 3-year-old would never be able to swallow!), was daunting. Considering I was also 5 months pregnant, it was even more so.
We had no human capacity to grasp the magnitude of what we faced. All we knew is that we believed our son could be CURED. On the top of the drawing in which our oncologist scribbled each event to occur, we asked him to write the title that would define our entire journey: “The Road to the Cure.” He did, and gratefully, it has been a self-fulfilling prophecy.
CURE Childhood Cancer gave us hope for that road early on in our journey. As we quickly learned all about neuroblastoma and the vicious way it ravages children, we learned that CURE is one of the top supporters of research to stop childhood cancers. We also learned that because neuroblastoma is such a complex disease of the sympathetic nervous system and requires the most intricate of studies, a very small amount of research money is dedicated to ending the disease. However, CURE, has committed funds to support anti-body treatments that are improving the survival rates for neuroblastoma children every day! CURE has invested in top researchers who understand this deadly disease, so perhaps parents won’t EVER have to hear the words we heard at the beginning of the journey: “We can give you a few really good years with your child…”
“A few really good years?” Is that really what we want for our children?
Certainly, “a few really good years” is a blessing to any parent facing the “odds” we faced with Jack. You will scramble to hold onto to any scrap of hope with your child. Yet, we wanted and BELIEVED in a lifetime. We wanted and BELIEVED it was worth the fight. We wanted and BELIEVED in the Cure. And, with grace and amazing doctors, we are now living it 5 years past Jack’s surprise diagnosis in the hospital that day.
We never expected to need CURE the day we walked into the E.R. We never expected we would be fed a warm meal by volunteers every week, or be personally touched by the benefactors who support the organization. But we did, and were indeed blessed continually by CURE and the support of people, we will never even know. Sadly, statistics say that many of our kids will relapse and need CURE again. And, CURE will be there to help the family’s immediate needs, while fearlessly fighting to stop it from happening to another child. We pray every day that won’t be Jack. But one thing is certain: from the human touch we received in the hospital, to the groundbreaking research being done for children like Jack all over the world, we couldn’t be more grateful.
Today, Jack is entering 3rd grade, and is as healthy and happy as can be. He knows he had “sick cells”, and now wears hearing aids because of the profound hearing loss he suffered from the harsh chemo. He doesn’t have any reflexes in his legs, feet or hands, which means he can’t be in the military. But, on his tummy, he has a badge of honor that we never expected him to have: it is the scar from his tumor that says, “I AM the Cure Baby!”
By: Jennifer Williamson