Miles

On November 19, 2020 (his 6 month birthday), Miles was diagnosed with neuroblastoma, a rare type of childhood cancer. Ever since birth, Miles seemed to have tummy troubles, was very fussy and just couldn’t get comfortable. We took him to his pediatrician many times leading up to his diagnosis. We were told that Miles had a bad case of GERD. However, as time went on Miles started to show symptoms that were downright scary. He would have what we called “episodes” of getting really red in the face, holding his breath, and squealing in pain. It lasted only a few seconds and he would eventually come out of it and start smiling again. He then started to breathe strangely. Every breath he took in and exhaled sounded like a grunting noise. We of course took him back to his pediatrician and we were told that he was constipated and he was starting to experiment with his noise making. Then, over the course of three days, his symptoms got worse and worse. He began to sleep a lot. He would take a long 3-hour nap, wake for 20 min, and then fall back asleep for another 3-hour nap. He went from drinking 6oz of formula to 2oz. He was uncomfortable and not totally with it. The final symptom that put us in panic mode was that we noticed he wasn’t moving his legs very well. We rushed him to the emergency department the morning of Thursday, November 19th. By the time we got to the hospital, Miles was completely paralyzed from the waist down. We were panicked, worried, and so scared for our sweet baby boy.

The PA on duty ordered a CAT scan. The results revealed that Miles had a large tumor wrapped around his spinal cord. It was compressing his spine, essentially crushing it. Devastation, shock, and complete loss of emotional control are only some of the ways to describe what we were feeling. I collapsed into my chair and screamed. My husband leaned over Miles crying. It was surreal. He was rushed to Children’s Hospital Colorado in Aurora and we were told that the tumor looked like a type of cancer called neuroblastoma, but they could not be 100% certain without a plethora of tests Miles would be needing. However, it was crucial for them to decide on a treatment plan immediately because Miles’ spinal cord was on the verge of being crushed and causing lifelong paralysis. On November 20th, our son went into surgery and that night he received his first cycle of chemotherapy.

Miles has completed 4 cycles of chemotherapy. We would spend long 10-hour days at the hospital for his infusions. Due to the pandemic, only parents were allowed in the hospital. This meant that we had to split up where one parent was with our toddler at home and the other in the hospital with Miles. Our family immediately experienced the effects of Miles’ cancer diagnosis. We were separated, distant, and disconnected. This was a huge change for our family. Our 2.5-year-old daughter was very confused and she missed her brother and mom (or dad) depending on who was with Miles in the hospital. For three months we were not able to sit down for dinner as a family. When Miles was home he was very sick and needed a lot of attention. Our daughter started to show signs of sadness and anger. We did not know how to navigate through all the emotions that our entire family was feeling. We were going through a trauma that shook us all to the core. Once Miles started to feel better after his infusions, things would slowly start to feel more normal. We would all get to play together and Miles and his sister were able to spend a lot more time together. Then, just like that, another cycle of chemo would come and knock us off balance. Treatment was difficult, exhausting, and heartbreaking. But it was working.

Miles is the champion here. He was the one who had to endure all the pain, pokes, sickness, scans, and weakness. However, as a family, you start to feel those same things but in an emotional way. We all felt that our mental and emotional selves were going through pain and pokes while watching Miles fight for his life.

Researching better ways to treat childhood cancer is beyond important. It is vital. Give Miles and other children like him a chance to live their life without having to compromise their ability to live fully and pain-free. We know that if more people are invested in kids’ cancer research that better treatments and even a cure will become available.

Simply stated, Miles is our hero. Our baby boy turned 1 year old on May 19th and he has already gone through more than any average person will go through. He still faces a lot of challenges from undergoing chemotherapy and has a swallowing disorder that he still needs to overcome. However, he is now crawling, climbing, and trying to walk! He is not letting cancer stop him from being a baby. Miles is such a happy baby and loves to cuddle. He giggles all the time and loves playing with his big sister Hazel. He also loves his dog Banjo and will sneak food to him at his highchair. His other interests include playing with toy cars, hiking with his family, and listening to music. We are so proud of our cancer warrior. Miles has inspired us to live every day with love and kindness. We hope that reading Miles’ story will inspire you to do the same.