MEET SOME OF OUR STRONGEST SUPERHEROES
Sloane was diagnosed on November 21, 2017 with Bilateral Stage D Retinoblastoma, RB1 gene positive, non-hereditary. After a horrible Monday in multiple doctor’s offices, our family celebrated Thanksgiving with a lot of tears shed, and then we got started. Sloane had an MRI to rule out any brain metastasis and underwent surgery for a port placement. She had her first round of systemic chemotherapy while inpatient at Riley Children’s Hospital in Indianapolis, Indiana. Sloane continued this monthly and finished six rounds in May of 2018. During this time, she went through multiple EUA’s with other treatments including cryotherapy to the smaller tumors. Unfortunately, in late June the cancer had spread drastically in her left eye. After seeking a second opinion in NYC at Memorial Sloan-Kettering, Sloane underwent left eye enucleation on July 17, 2018. Since July, Sloane has had four total surgeries on her left eye socket, resulting in having to replace her original implant with a new implant. While this was not in our plan, she has pushed through with amazing spirits. During this time we continued to travel to NYC monthly to see Dr. Abramson for laser treatment to her right eye. Sloane finished up laser treatment and went about 10 months with no active cancer in her right eye. In July 2019, Sloane’s cancer relapsed and she started treatment again. She went through two more rounds of laser and that didn’t take care of the new cancer. We have started Intra-Arterial Chemotherapy at Memorial Sloan-Kettering in NYC. Sloane is still brave, is not letting this hold her back, and will continue to fight like she has before!
Sloane has a big sister, Audrey who is 6. Sloane loves to dance, loves gymnastics, loves playing with her sis, and is always laughing. Sloane is funny and gives the best snuggles. Sloane is strong and loved by so many!
Izayah is a happy handsome little toddler who loves playing with his brothers and sister. We initially thought that he was battling retinoblastoma, but when he went for his first treatment and the tumors were observed it was determined that he required further testing. Unfortunately, we found out he is fighting an even more rare, incurable disease. Izayah was diagnosed with coats disease, which affects 1 in 100,000, and later coats plus syndrome, which in addition to impacting the retina/vision also includes abnormalities of the brain, bones, gastrointestinal system, and other parts of the body.
Over the course of our treatments so far his doctors have also discovered cancerous cells in tumors, holes in his right lung, as well as unexplained headaches, bone aches, vomiting and high platelet counts. Izayah continues to be seen at Memorial Sloan Kettering in New York, every 2-3 weeks for 7-10 days at a time, along with in between visits to Boston Children’s Hospital. Izayah will face many battles for the rest of his life but he is strong and has a loving family surrounding him!
Superman Jack Jack
Everyone who is a part of the Eye Fight for Kids Foundation is so incredibly helpful, thoughtful and genuinely compassionate about helping children and their families who battle retinoblastoma pediatric eye cancer everyday. Thank you so very much for everything! We are incredibly lucky to have you on our side while we fight this battle.
Jack Jack was doing pretty well in the beginning of the year. We were getting comfortable with our new routine away from the hospitals, doctors and chemo. We only went once a month for his EUAs. Even with chemo his right eye was still suffering while his left eye was doing great. In late June we heard everything we didn’t want to hear. Doctors found a tumor in a spot they couldn’t treat with laser or cryo and because of how close it was escaping his eye the only option was to remove it immediately a process called a enucleation. His right eye was removed shortly after they found this tumor. Jack Jack did great during the surgery and was a active boy doing normal things the next day. When they did the enucleation they put in a small piece called a conformer that helps keep the socket in shape and to heal in order to get his prosthetic eye. He thinks it’s a game to remove this piece and it puts us in the ER putting it back in. I just learned to put it back in with help and successfully done it two times now! We also are now just seen some late side effects from the chemo he received as a baby. Some are neuropathy, high pitch hearing loss, and development delays. It seems as every day it’s something new but we are winning this battle! Thank you again for all your help and support!