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“I never imagined we would face childhood cancer.”

Jul 7, 2020 | Rally Blog, Rally Research | 0 comments

WRITTEN BY RALLY MOM KELLYANN

I never, ever imagined we would face cancer. Let alone, childhood cancer.

My son Nolan was eight years old when he was diagnosed with osteosarcoma on February 18, 2019, at Children’s Healthcare of Atlanta (CHOA) Scottish Rite. Nolan had been experiencing pain in his leg when, after seeing an orthopedist and receiving x-rays, he was referred the hospital for an MRI then a biopsy.

It was supposed to take 3-5 days for results but, in a matter of moments in that post-operating room, our world crumbled when we were told that Nolan had osteosarcoma, a bone cancer. As we would come to learn, osteosarcoma is the most common type of bone cancer in children and adolescents; it typically occurs in patients under the age of 25. The survival prognosis for a child with osteosarcoma is about 70-75% but drops even lower to 20-30% in the event of a relapse. Needless to say, we were terrified.

Nolan was admitted on March 5, 2019, to begin his first round of chemotherapy. Because Nolan’s cancer was localized, he would receive about 10 rounds of three different forms of chemotherapy and undergo surgery to remove his tumor (which we named Venom) along with three-quarters of his femur — and then receive 10 more rounds of chemotherapy.

Nolan at the start treatment.

On July 9, 2019, Venom was removed from Nolan’s body. Nolan’s amazing surgeon was able to remove all of the tumor and was able to get clear margins. Nolan has a scar from the top of his right hip all the way down to basically his knee. It is a pretty impressive scar!

Nolan now has a device in his leg the surgeon can lengthen as he grows. Luckily, the lengthening process is painless, and he will continue to be adjusted until he is a late teen.

Nolan ringing the bell to signify that treatment was over.

Once Nolan rang the bell symbolizing the end of treatment, we left for Walt Disney World the next day to celebrate the year we had—including both the highs and lows; the tears and laughter.

Nolan with his mom, dad and sister at Walt Disney World.

Almost a year later, Nolan continues with physical therapy twice a week and he still walks with a heavy limp.

You never know what will be important to your cancer kid. One thing that Nolan was pretty adamant about was that he wanted his leg back. He said that he did not have a lot of control over the entire process of his illness, but he did have the right to have his leg back. Thankfully, we have wonderful family friends in the funeral home business. Our friend, Chad, went to the hospital to pick up the part of Nolan’s femur that was removed and he cremated it for him. Nolan’s leg now sits proudly on his dresser. He even brought it to school for show and tell!

Nolan holding onto his cremated leg.

The Harsh Reality of Childhood Cancer Treatment

While Nolan is now thriving, we’ll never forget the physical and emotional cost of the road to recovery.

One of the biggest challenges we faced as a family was that Nolan’s only sibling, Makenzie, who is just 21 months older than Nolan, was apart from him during treatment. They are the best of friends and we had no idea what it would be like for them to be without each other. We quickly learned that Mackenzie was and still is Nolan’s best medicine. We are a family unit that works best when we are all together.

All of Nolan’s treatments were done inpatient, so we spent more time at the hospital in 2019 than we did at our own home. Nolan is a small-framed kid. He did not have weight to lose, but because of the nausea caused by the chemotherapy, he lost close to 12 pounds. He literally was skin and bones. His tailbone, spine and shoulder bones started to protrude, and we could see the port line in his neck. It was brutal.

One of Nolan’s treatments required the nurse to be fully covered and protected head-to-toe to administer his chemotherapy. Let me tell you, it is absolutely terrifying to see a nurse walk into your child’s hospital room suited up from head to toe. Nolan asked his nurse why she was so covered. She paused and said, “It’s just to protect you, buddy.” Later, once Nolan was asleep, she revealed to us that the suit wasn’t to protect Nolan, but to protect her. Imagine that? The very three drugs used to save my son’s life were so toxic that they can’t touch your skin—yet it was being injected into my child?

It’s Time for Things to Change

The treatment plan for osteosarcoma has not been updated or changed in over 40 years. Forty years! Children are dying every day, every hour, every minute, yet we are still using the drugs that were introduced four decades ago. We need to change this! This is not okay.

While the harsh chemicals that were pumped into Nolan’s body ultimately saved his life, he will have to live on with the damaging side effects. He has permanent hearing loss and now wears hearing aids. His skin and eyes were so sensitive that he had to be protected from sunlight during treatment.

This is where Rally comes in. Because of this organization, new developments are being made in osteosarcoma therapies, including immunotherapy approaches to fight osteosarcoma. By making a donation to Rally Foundation for Childhood Cancer Research, you are helping fund cancer research specifically for kids and teens (just like Nolan!) with the hope that we will discover new and better treatments with fewer harmful side effects, and ultimately cures.

We Find the Joy

As Nolan’s mom, I never, ever imagined that we would face cancer. On that dark day when our world suddenly stopped, and life as we knew it was forever changed, I wish we would have known that it is going to be okay. That we will come out of this stronger; that Nolan’s life was not over. I wish we would have known that cancer is not a death sentence and that we as humans have the choice to find joy or wallow. Spoiler alert: We always choose joy.

Do we have our bad days? Yes. Do we cry more easily now? We sure do. Do we pray every single night that this beast called cancer will not reappear? Yes.

Every. Single. Night.

I wish Nolan and Mackenzie did not have to grow up because of cancer. I wish Nolan’s friends did not have to visit him at CHOA and see just how sick these kids are. But I truly feel that because of cancer, we all have a little bit more compassion. What would have bothered us two years ago just is not worth it anymore. We find the joy.

Join us in the fight against childhood cancer. Please consider making a donation to osteosarcoma research today.

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