Miles was born on August 15, 2005. We were so excited to welcome our adorable baby boy into the world. He was everything we imagined he would be and we were thrilled the day we brought him home.
Just a few days after he was born we noticed a small bump on his back. I asked the pediatrician about it at our first well-check. The doctor didn’t think it was much to worry about and she recommended we simply keep an eye on it. At each appointment during Miles’ first six months, I asked about the bump. At his six month appointment, she sensed that my concern wasn’t going away and agreed to order an x-ray.
On February 21, 2006, the X-ray showed Miles has scoliosis but did not identify a cause. Scoliosis runs in our family so we were not alarmed, but I did ask the pediatrician if we could explore what might be causing it.
While looking into the scoliosis, the bump on his back continued to get bigger. His pediatrician agreed that it needed additional investigation and ordered an MRI.
On the day of his MRI, our family joined us at Cincinnati Children’s to lend their support and pray. Our expectation was that the MRI would take around 45 minutes to complete and then he would be moved to the post anesthesia care unit where we would be able to see him. 45 minutes came and went and after about two hours, we were really concerned.
After what felt like days, one of the staff members came out with the news that the test had taken longer than expected because they had found a mass on his back. At that moment my world stopped. We were hearing the unimaginable. How could anything be wrong with the most precious little person in our lives?
That night we met Dr. Absalon and discussed what the next couple of days would look like. He wanted to admit him for further testing and a biopsy. The next several days were a whirlwind. We met so many new people. Each one of them reassured us that they would do everything they could to help Miles get better. We found this consistent reassurance incredibly comforting and very much what we needed as we waited for the test results.
A few days after Miles was discharged, Dr. Absalon called my phone with the results of the biopsy. My heart sank: neuroblastoma.
Since the day we found out that Miles had a tumor on his back, we prayed each and every day that the biopsy would show that it was benign. Now that we had a diagnosis, we couldn’t believe that he had cancer. It just wasn’t possible.
Miles began chemo treatments in May. Four rounds every three weeks. Each treatment required a 3-5 day stay in the hospital. We sure got to know the staff well!
After four treatments, Miles had scans to determine if the chemo was successful. Unfortunately at this point, they recommended that Miles to have two additional treatments.
We went back and started the process all over again. At the end of treatments this time around, however, the scans showed that less than 20% of the tumor remained and it was not active. His doctors were happy with the results.
After his treatments finished, he was scanned every three months to check for any relapse in his cancer. At just over a year since his last chemo treatment, Miles was doing so well and growing like a weed, running everywhere and acting like a normal two-year-old. So when I received a call from Dr. Absalon and his nurse, Paula, it took me off guard. They were calling with the results of what we’d thought was a routine MRI a few days earlier. They told me the words I hoped I would never hear. The tumor was growing again and very quickly. It was pressing on his spinal cord and he needed treatment immediately.
After consulting with both the orthopaedic surgeon and the neurosurgeon – over the phone because there was no time for in-person consults – we determined that surgery was the best course of action for Miles.
So on November 2, 2007, Miles had an 8-hour surgery to remove the malignant mass from his spine. The surgeons said everything went well and they were able to remove 100% of the tumor. He spent a week at the hospital recovering and was then able to go home.
Miles continued to be scanned regularly and I am thrilled to report that he is now part of the 5+ clinic, which means he is cancer-free and only needs to be checked every five years. He is doing so well and we are so grateful for every day that we have with our precious son!
We were recently asked to help Cincinnati Children’s tell their story by participating in a TV spot with Lionel Chow, MD, PhD, who facilitates clinical research trials similar to the one that helped diagnose and treat Miles. I was so honored and humbled to meet him. If it wasn’t for researchers like him, Miles wouldn’t be here today. He wouldn’t be a typically developing, thriving, soccer-playing eight-year-old.
In fact, he’s doing so well that none of his teachers and friends even knew he had cancer when he was young. They found out about it when they saw the commercial.
When I reflect upon what could have been, I am delighted that so many people in his life don’t even know that he was once so sick. I think that’s quite a testament to the importance of pediatric cancer research and funding, and I am grateful every day that my son was able to benefit from the discoveries that so many scientists and doctors work tirelessly to find.
Editor’s note: Here’s a behind-the-scenes look at the commercial Miles’ family and Dr. Chow participated in, which explains why the need is so great for pediatric cancer research funding.
This blog is awesome! It made me cry again, but I am so happy. Nana