Rhett Bell – age 3.5, USA

PNET Fighter status – 2 years

Rhett’s story, written by Nicole Owens-Bell, Rhett’s mother

Rhett was diagnosed at 24 months. It was a week after his 2nd birthday in September 2015.

The tumour was discovered in an MRI scan. The initial scan showed a larger tumor in the brain and abnormalities all along the spine. Upon discovery of the brain tumor he had a 12 hour surgery to remove 90% of the tumour. Once removed, the tumor was sent for further testing and a week later it came back a PNET diagnosis. Being so young in age and having a limited vocabulary, the only symptom he was experiencing on a daily basis was vomiting. Initially I thought it was a cold I didn’t take him to the doctor for a week. His first doctor visit he was casually diagnosed with tonsillitis. After a week of antibiotics and no improvement, I took Rhett to the local hospital emergency department. The doctor in charge did a quick glance over him and told me that he seems to look alright and there is nothing that can be done for him in emergency. Another week went by with no change, still vomiting 3-4 times every morning. I was at the grocery store shopping when Rhett threw up again. This time it was all over the shop. I walked back to my car and cried. I called my best friend and asked her what do I do? I have been to a couple doctors and the hospital and no one seems worried or concerned. She said, take him straight to the children’s hospital. I sat in the waiting room for nearly 3 hours with about 3 dozen other sick kids, mostly sick with a gastro bug. Once called to be seen, a resident doctor saw us and took Rhett vitals. He was puzzled as to a cause. Constant vomiting for nearly 2 months is not normal. I was asked to make an appointment with the pediatrician down in Emergency. I was to come back in 2 days. We did just that. We met with the pediatrician down in Emergency and he wanted blood test to be taken but Rhett had a head cold on top of everything else so I was told to wait another day before meeting back with him for blood tests. The following day I met him in his office. Upon our arrival Rhett vomited in the door way. By this time it is as common as a baby spitting up. The routine went as follows: Rhett vomits, I catch it, I then apologize, wipe his face off and move on like its no big deal. The pediatrician took one look at him and admitted him to the hospital. He said the plan was to get bloods taken, to go home and wait a week for results to come back. But, Rhett was too sick to leave the hospital. We stayed in the hospital for 2 days before the brain tumour was discovered. First blood test were ordered. Then ultra sounds ordered. An ECG was performed. Finally an MRI was scheduled. It took the first brain scan image to show up on the screen to see a golf ball size tumour in his brain. We were informed immediately about the discovery and were told that the neurosurgeon has been called and they are prepping Rhett for emergency surgery. Rhett was treated the The Royal Children’s Hospital in Melbourne, Australia. We started Chemotherapy the beginning of September 2015 and finished treatment the end of March 2016. Currently Rhett receives MRI scans of his brain and spine every 3 months. As to date he is Cancer free.

Rhett is now a 3 and half year old boy who loves life. He, walks, runs, and plays as though cancer never happened. He suffers from high frequency hearing loss and wears hearing aids in both ears as a side effect to treatment, but he welcomes his “new ears” and wears them when we go to play with friends. Rhett is the youngest of 3 boys. His older 2 siblings were 5 and 6 at time of diagnosis. They each handled the situation differently, but well. The oldest boy was a bit more aware of the situation and the severity of Rhett. He was emotional from time to time, but had a great network of friends to keep him happy and going. The biggest advice I can give is to take each moment as it comes. Don’t think of the what if’s or plan far out. For my family, going and doing activities, even during treatment, were what helped us through treatment and it is what continues to help us now as, I am sure, we suffer from some form of PTSD. Rhett would be discharged for a day from the hospital and we would just go away. We would pack a picnic and drive a hour to a remote beach and sit in the sand and listen to the waves as a family. We would drive to a remote park and feed the beautiful birds. We would go for a nice family hike or a long walk. I found these experiences to be hard to do. I was exhausted, we all were. The effort it took to pack up all medications, feed pumps, all the tantrums Rhett would throw, the pain he was experiencing etc, it would have been easier to sit as home. Our home that we had not sat in together for months, but we packed up and left for the day. Creating good memories among the hard days of treatment are what carried us through. A I look back on those 7 months I am so grateful I have a few nice, quiet, happy moments away from the hospital. I also wrote down anything good that happened. Sometimes there were few good things to write about. They were as simple as, “Rhett woke up this morning and didn’t vomit. First time in nearly 2 months he hasn’t vomited in the morning.” Or, “Rhett sat up in bed today. He threw his food at me, but I smiled to think he has the strength to throw food at me.” I kept these random good thoughts in a small book. When I felt fear or despair overcome me I would get out my little book and read all the good things, it calmed my heart and kept the light lit in the darkest time of my life.