For everyone involved in his care and support, there are simply no words to express our appreciation. Your positive thoughts and prayers have helped us to stay strong during Eli’s care and subsequently, during this exceptionally difficult time.
Thanks to your donations, every potential treatment option was able to be pursued for Eli. This was of particular importance as due to the rarity of melanoma in infants, there was no clear treatment plan, and specialists throughout the United States were involved in Eli’s care.
My name is Eli and I am a playful baby boy that loves to play with anything that makes noise, lights up or plays music. My family is raising money for my medical care for pediatric melanoma. When I was 6 months old, my parents noticed that a mole on my back started to grow very quickly. The doctors told my parents this is something that happens and the growth is likely a benign tumor. However, when the test results came back, it was melanoma. Having melanoma as an infant is very rare and therefore, there are not many doctors with experience in this area.
I had my first surgery to remove the cancer from my back from a local hospital near my home in Virginia. The only problem with surgery is that the doctors were not able to obtain clean margins. Due, to my young age and the extreme rarity of my condition, I was taken to see “Pediatric Melanoma” specialists at MD Anderson (MDA) in Houston, Texas. This is the only place in the country that my family was able to find that has specialists for my condition with experience treating infants. My oncologist at MDA specializes in pediatric bone and melanoma cancers and my surgeon at MDA specializes in melanoma. However, I am still their youngest melanoma patient to date. As of Dec2014, the doctors at MDA said I could beat this disease, but it is going to be a challenging road ahead, taking surgeries to eliminate as much disease as possible and subsequent immunotherapy treatment to rid my body of the cancer.
I had a second surgery at MDA at 9 months old to remove a much larger section of the skin on my back and to biopsy the Syntel lymph nodes. I received good news in that with this surgery clean margins were obtained on my back; however, the cancer had spread to my lymph nodes. Again, the doctors had not anticipated that the cancer had spread to my nodes because of my young age.
After giving my body time to heal from the 2nd surgery, I returned to MDA at 10 months old. During this visit, I was scheduled for medical scans and to have all of the nodes under my right armpit removed. There was another big surprise in the fact that the scans showed an unusual growth in my left shoulder blade area and spots on my lungs.
The decision was then made to remove the growth on my shoulder and to wait on the removal of my lymph nodes. (The reason for the delay is that the recovery from the lymph node surgery can be challenging for an infant and if the cancer has spread to the lungs, that surgery is no longer recommended). I was happy to learn that the growth in my left shoulder turned out to be benign (not cancerous).
The plan was to wait until the end of Mar2015 to return to MDA to have my lungs re-scanned in the hope that the spots were infection and not cancer. If the spots in my lungs did not grow, then it would not likely be cancer and therefore would have proceeded with the surgery to remove the nodes under my armpit.
However, on Monday, 09Feb2015, I went to the ER at Nemours, A.I. duPont, Hospital for Children in Delaware, as I was having trouble moving my legs and it hurt terribly to sit. On late Tuesday, 10Feb2015, a MRI of my back found a tumor on my spine. On Wednesday, 11Feb2015, I went into surgery to remove as much of the tumor as possible which stopped the pain and gave my family some time to determine next steps.
The tumor in my back was confirmed to be melanoma. The remaining part of the tumor in my back showed growth in one week, so it is very fast growing. The doctors are also pretty sure the few tiny spots, previously found in my lungs, are likely cancer as well. So, I am now officially stage 4.
After almost 2 weeks at Nemours hospital filled with surgery, scans, IVs, wound treatment, infection, my first fever, and antibiotics, I was discharged from the hospital on Friday, 20Feb2015. Once I got home, I took the best nap ever. I began to regain some of my leg movement and was actually able to sit in my bouncy chair, yeah!
With the spreading of my cancer, my prognosis significantly worsened, but I did not give up. My family worked with the nice doctors at Nemours, as well as my primary oncologist in Virginia and many other specialists to determine treatment options to give me the best quality of life for as long as possible.
I received radiation on my back in Mar2015. The radiation oncologist and his staff was so nice and helped me celebrate my first birthday! I did not have too many side effects from the radiation. At this time, I’ve regained leg strength and am working to take my steps! This is huge as, at the time of my back surgery in Feb2015, it was not known if I would ever move my legs, let alone, walk!
The radiation targeted the tumor on my spine, but we also have to deal with the cancer in my lungs. My primary oncologist in Virginia has been amazing, talking to specialists all over the country, and helping us to determine the best treatment plan for me. In pursuing treatment options, I visited the National Cancer Institute (NCI) in Bethesda, MD. NCI has a clinical trial that I am currently being considered for and is of great interest to me. It is an FDA approved drug for adults with melanoma showing very good results and is being tested in pediatric melanoma patients. While it is not a cure, it will hopefully delay the progression of my cancer and give me the best quality of life for a longer duration.
Near the end of Mar2015, I had a port put in to make it easier to give blood for the frequent tests and receive medications. So, glad I don’t have to go through all the needle sticks any more…whew!
By early May2015, the cancer spread to almost every part of my body, but I continued to be a trooper. On 28May2015, Eli peacefully departed.
Thank you again for your donations and helping to give Eli the best chance to beat his disease. It is also hoped that the information learned from Eli’s fight with melanoma will help future kids battle this disease.
DonationsSee top donations
- Richard M Royal
- Marc Buller
- Richard M Royal
- Jason Moore
- JAMES ONEILL
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more