Colton’s Story…

Colton was a healthy, fast growing, super active 3-year-old, playing tackle football with his older brother’s, Andrew and JJ. During Christmas break of 2021, Colton started to lose energy, he was very tired during our trip to Disneyland. He started complaining about his legs hurting. As soon as we returned, I took him to the doctor, he tested positive for Strep. We did the 10 days of antibiotics, but Colton still was not getting better. He had no energy and just wanted to lay down. I took him back to the doctor and asked them to please do bloodwork on him, but that something wasn’t right. They called back a few days later to tell me Colton was anemic and was having severe growing pains. They wanted me to put him on more supplements and come back in a month. That did not sit well with me and assured them I would be back in a week if he wasn’t getting better. That weekend, Colton took a turn for the worse. He stopped eating and drinking. He wouldn’t hardly move. On February 7, 2022, I decided to take him to Arkansas Children's Hospital, about an hour away. From the moment we walked in they went into action; within 5 minutes they felt his stomach and told me he had a huge mass in his stomach. Within an hour they had confirmed a parent’s worst nightmare. Colton had a 12cm mass on his left kidney, it was wrapped around the aortic vein. The next week was filed with every scan possible, biopsy and they put a port in his chest. The MIBG scan showed that the cancer had spread all over Colton, his scan lit up from head to toe. He even had a tumor breaking the bone in his left femur, from the inside. He was given a Curie Score of 28/30 and the official diagnosis of Stage IV High- Risk Neuroblastoma.

They immediately started Colton on an aggressive chemotherapy treatment plan. After cycle 4, Colton’s scans showed that his Curie Score had dropped to a 4/30! That can only be explained as an absolute miracle. After cycle 5, the surgeons were able to remove 95% of the main tumor on Colton’s kidney, the remaining 5% was found to be dead and they were able to save his kidney. Praise God. After his surgery his Curie Score went down to a 2/30! He completed a very rough Cycle 7 of Chemotherapy and a Stem Cell Transplant. The combination of harsh chemotherapies and transplant can be VERY damaging to the body, in Colton’s case, his gut took a terrible hit. After much prayer, the doctors and our family have decided against a second Stem Cell Transplant. He completed 15 Radiation treatments on his abdomen in August 2022. The Immunotherapy was extremely hard on Colton’s body as well. They completed 6 treatments of Dinutuximab at the very lowest dose and Colton’s body still did not tolerate it. Colton’s scans and numbers looked great! He was starting to get back to living his little life and feeling so good!!

Things were still looking very promising, and we were all optimistic that the cancer was all gone. We celebrated Colton’s 5th Birthday May 22,2023 but May 31, 2023, when we came to get the results of his final scans, they found a tumor in his left femur again. The cancer has returned. They are considering this a Neuroblastoma Relapse. We spoke with our team of doctors at Arkansas Children's Hospital and with a Neuroblastoma specialist at MSK in New York, they came up with a plan of radiation, chemotherapy and a new immunotherapy called Danyelza. We started with a week of two chemotherapy’s and 20 radiation treatments at the beginning of July. Then we started the new immunotherapy, it did not go well at all. Colton had a terrible reaction once again. This time it landed him in the hospital for 24 days, half of that in the PICU and then ended up at heart failure. After yet another terrible reaction, we are left with minimal options of treatment going forward. We agreed to one last round of chemotherapy on October 2, 2023, and will have scans on October, 17 2023. We are praying for clear scans!!

After much prayer and research, we have decided to start Colton on holistic care after his scans. We strongly feel that we have taken modern medicine as far as it will go for Colton, his body just can’t take it anymore. We have found a cannabis regiment that we are seeing help other children with cancer. Almost all the children that have taken this cannabis treatment was sent home on hospice but are now cancer free and thriving!! We have prayed for Colton’s cure, and I feel VERY hopeful and optimistic that this is it!! Our doctors have made it clear that relapsed Neuroblastoma without these treatments is incurable, I told them I strongly disagree. His palliative care team has approved his Medical Marijuana card to get this treatment started! We are anxious but very excited to start Colton on his healing journey! We are so grateful that Colton’s oncology team are all being very supportive and said they will be here to help in any way they can.

As you can imagine, this is the hardest thing a family has to go through. Not only is your heart breaking for your child, but you still have other responsibilities. Trying to balance being a full-time caretaker to a sick child in and out of the hospital for weeks at a time, caring for Colton’s two brother’s and trying to work and provide for our family, unfortunately, it’s near impossible. We are a family that works hard for what we have and do not like to ask for help. Going forward, his new treatment will not be covered by insurance and is very costly. It will cost about $2000-$3000 a month for his holistic care needs. If you would like to help us during this very hard, it would be greatly appreciated by all of us.