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Fighting Melanoma with Courage: Daniel’s Story

Guest blog post by Antonietta Forte, mother of stage IV melanoma fighter, Daniel Forte:

It was the end of August 2015 and it was time to take my boys, Ryan and Daniel, for their back to school haircuts. As I sat in the chair watching Daniel get his haircut I saw that the lymph node on the right side of his neck was swollen. Immediately I felt panic come over me – what is going on? Why is his lymph node swollen? I knew it could be a sign of cancer. As we drove home I told him we would go see his pediatrician. I was able to get an appointment that evening. The doctor had seen a scab above his ear in his scalp that he had picked. It was red. She prescribed antibiotics and took a swab to test for a staph infection. After two weeks of antibiotics the swollen lymph node did not go away. We took him in to see the pediatrician again and they ‘fast tracked’ us to see a dermatologist. At this time school had started and it was the middle of September. It was Daniel’s 6th grade year and his last year at his elementary school. He would turn 12 years old in October.

The dermatologist performed a shave biopsy of the area on his scalp. Then we waited. The results came back in about 10 days and we were all shocked – they found cells that were not healthy or normal. At this point they could not call it melanoma so we were referred to see an oncologist, ENT and plastic surgeons. How could this be happening? We never saw a mole in his head, just an area where he had picked at that was red and scabby looking. He had surgery to remove the lymph node and the spot on his head the last week of October. Then we waited for pathology results. The pathologist at The Children’s Hospital of Philadelphia (CHOP) believed the results showed melanoma; however, a second opinion at the University of Pennsylvania thought perhaps it was not melanoma but just abnormal cells. So we consulted with St. Jude and we waited. It was mid-January 2016 when St. Jude sent the results to us – conventional melanoma. Our lives would never be the same.

Our oncologist and St. Jude recommended that Daniel follow a course of high dose interferon therapy for one month followed by weekly injections. Scans showed that he had no active disease – surgery had removed everything. However, we all knew that once the cancer had gone into his lymph node that melanoma cells could hide anywhere in his body.

Fast forward to March 2017: one year of interferon therapy completed. Scans showed no active disease – life was normal again. Daniel enjoyed middle school and playing video games with his friends. March 2018: scans came back clean. We had been scheduling PET scans for every six months and our oncologist thought we could push them out a little further. So we both decided to wait about eight months to the next scan. On Friday, Dec. 7th 2018 we went for his scan. In the back of my mind I just wanted to get to the three-year mark with no recurrence of disease – this was a big one for us. That night our oncologist called us – the PET scans had picked up hot spots in Daniel’s chest and clavicle bone. The following Wednesday we had a biopsy scheduled on his clavicle. I cried and hardly slept for the next 10 days. I had gone to work on Monday, Dec. 17th – Christmas was quickly approaching. When I came home my husband had greeted me outside the house – it was back. Our doctor spent an hour with us on the phone that evening – we were not going to wait and decided to start Opdivo and Yervoy that Friday, Dec. 21st. Daniel cried when we told him, as did his older brother. Why was this happening to him, to us, to our family? It felt like I had been sucker-punched in the stomach. On our drive home from CHOP after Daniel’s treatment he said that God knew he could handle it and that is why it happened to him. I told him that in my heart I know that God has plans for him to use this experience one day to help others.

Daniel only had two infusions of the combo treatment. He had a lot of side effects – fevers, nausea, neuropathy in his toes which was very painful, inflammation in his eyes – and scans in mid-March showed he had disease progression. We were all sad – especially Daniel – he had endured so much for it not to work. Our hearts were breaking. He then started Taf/Mek combo because he does have the BRAF V600 gene mutation and also had whole brain radiation. Scans as of mid-June showed that this treatment is helping. We are starting to see some tumors decrease in size. He started Keytruda and increased his dose of the Taf/Mek combo at the end of June 2019. Daniel has a tough road ahead of him. We cherish the days he feels good. My 15-year-old boy is fighting stage 4 melanoma. He finds ways to make us laugh all the time. He loves having family visit him and is finding ways to make the best of it. As his parents we must show him strength and positivity. We do everything not to cry in front of him. We have hope and faith that he will beat it. As his mom, I have found comfort in my Christian faith to get me through the days. “Be joyful in hope, patient in affliction, faithful in prayer.” – Romans 12:12

September is Childhood Cancer Awareness Month and Daniel’s story is a powerful reminder of the urgent need for more effective treatments for pediatric melanoma. If you are inspired by his incredible courage and positive spirit, please consider a tax-deductible gift to support life-saving research.