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!
Twin Sisters Supergirl Ella & Supergirl Eve
Ella and Eve were born on December 19, 2017. They were happy and healthy little girls. We were over the moon. At about ten days old, Eve stopped eating and became very lethargic. My husband rushed her to the hospital where her vitals dropped and her color began to fade away. We originally thought she had a stomach virus, but it turned out to be much more than that. Our worlds were crashing. It is an absolute shock and nightmare to know your child could possibly be dying. After exploratory abdominal surgery, Eve was diagnosed with a twisted bowel known as a volvulus. Her bowels were disconnected and brought forward, where an ostomy bag was placed. Eve then suffered septic shock, cardiac arrest, organ failure, life support, seizures, countless infections, transfusions, and so much more. She almost lost her life, on multiple occasions.
She would end up spending 6 months in the hospital, 2 hours away from home. You never prepare for your child to be sick. You may read all of the What to Expect books, but nothing prepares you for a heartbreaking diagnosis. My husband and I took turns with the twins. One would be 2 hours away in Philadelphia with Eve, while the other remained at home with Ella. We were on autopilot with no end in sight.
While Eve was in in-patient care, at about 1 month old, a white cloud wa slocated within her eye. She was examined, and it was determined that she had Bilateral Retinoblastoma. We then knew her twin sister, Ella, would need to be examined immediately. For the second time, in days, we were given another devastating cancer diagnosis. Ella had cancer as well. We had two children diagnosed with cancer. And the news was broken to us by two completely different doctors, as they were at different hospitals.
Ella and Eve both completed chemotherapy as well as many other treatments. Chemotherapy was one of the hardest parts oftreatment. And they may possibly have to go through it yet again. They lost their hair, their appetite, and their joyful personalities we had grown to love. We still travel 2 hours to Philadelphia for anesthesia and exams. This is often, more often than we would like. It’s tough on them. They are just so scared when it’s time for the doctors to whisk them away. They have petrified looks in their eyes, which are unforgettable. And the anxiety for us is excruciating.
Fast forward to the pandemic. Fast forward to a new set of challenges we are now forced into. Fast forward to now choosing which appointments are a priority, appointments and treatments that are life-saving for Ella and Eve, now being canceled. And not by our choice. Ella and Eve are still considered chronically ill. They have a long road ahead, and we, as parents, will make sure that they have every opportunity available to them. This is now challenging, given the unfortunate pandemic.
Ella and Eve were granted a Wish Trip to Disney World back in February. When we returned home, Ella and Eve got sick, very sick. Little was known about coronavirus. We watched our children suffer for three weeks and did our best to make them comfortable.
Ella and Eve were then due for their tumor checks under anesthesia. We kept thinking Ella and Eve were the priority, they have cancer. They will not cancel this exam, it’s too important. If this cancer returns, it’s extremely aggressive and agonizing. But sure enough, the appointment was canceled for weeks. I was so nervous their little bodies were under attack by cancer again, and it was being left to grow. We were finally able to get them in to be examined. We took every necessary precaution. Ella and Eve needed to be swabbed for Covid-19. This is now necessary before any procedure.
When Ella and Eve were diagnosed with cancer, I could no longer return to my career. I have to make sure their plethora of medical needs are met. I have to keep them safe and healthy; that is now my job. My husband works as a lighting and sound engineer in the entertainment field. He was working 7 days a week to make ends meet. Now, his job is no longer, due to Covid-19. My husband’s career will probably be the last to return, as he is around many people in this line of work. His unemployment has been in limbo. The government packages have been false hope. And we honestly do not know how we will manage.
Last week, we found out Ella has an asymmetrical tongue which could mean a neurological issue in her brain, worst case is a brain tumor. She has also recently been complaining of eye pain. I do not know how to explain how my husband and I have been feeling right now. What you have done for our family is truly a miracle, and couldn’t have come at a better time. Things have been so tough lately. I was feeling sad, when a little ray of light came during a dark time! Thank you so much!
Guardian Angel & Superman Greyden
IN LOVING MEMORY
For most parents, worry is a constant thing and the questions and doubt are plentiful. In our case, we were very much blindsided by our cancer diagnosis. At 10 months old, our little guy was an active, happy, outgoing, sweet kiddo. He was healthy and was meeting all his milestones on time or even early. We noticed some “discoloration” in the pupil of Greyden’s right eye, we waffled between feeling freaked out that there may be an issue, and telling ourselves we were over-reacting. It quickly became obvious there WAS something to worry about.
The opthamologist informed us that what he was seeing did look like tumors. The diagnosis at that time was bilateral retinoblastoma - or cancer in both eyes. After checking insurance coverage and researching various hospitals that specialize in retinoblastoma, we ended up at U of M for further diagnosis and treatment. Dr’s there conducted an MRI to further image the tumors and see if they had spread. Sometimes bilateral retinoblastoma can spread to other areas of the body and sometimes there can also be a third tumor, one in the brain. This is called trilateral retinoblastoma, where 3 tumors all grow independently of one another.
They assured us this is extremely rare. The likelihood is super small. A few days later we received the call with the results. And yes, they had also found a tumor in Greyden’s brain. This changed our diagnosis from bilateral retinoblastoma to trilateral retinoblastoma. And, they informed us, this also changed the survival rate from 98% to around 50%. Since Trilateral Retinoblastoma is so rare, there’s not a lot of research or clear guidance on how to treat it successfully. However, what information is available seems to support that of the 50% of kids who survive this cancer, a majority received high dose chemo followed by a rescue stem cell transplant. After 4 rounds of chemo and stem cell transplant, Greyden had completed his treatment cycle. After numerous appointments, no news was good news, but it’s a marathon... not a sprint.
In May, Greyden had a routine MRI, as he did every 6 months since his diagnosis, and we were told the doctors saw new cancer in his brain. This time in the nerves of his brain. We were completely shocked as he had clear brain MRI’s for over a year, and we had been successfully containing the tumors in his eyes.
On June 11, 2020 at 2.5 years old Greyden lost his battle to Trilateral Retinoblastoma. R.I.P. Sweet Boy. We love you.
Mabel Gedion was born on June 27, 2019 in Cleveland OH. Mabel was diagnosed with unilateral retinoblastoma when she was just 9 months old. Mabel receives her treatment at Wills Eye Hospital and CHOPs in Philadelphia. She completed her IAC and has continued follow up doctor appointments every 3 months. This is to ensure that the tumors have ceased.
Mabel’s family is having difficulty with their medical bills Mabel’s mom is currently an RN student and her dad is an auditor and was also finding additional sources of income through Uber on the weekends. Due to COVID, he had to stop working the Uber job and no longer had that additional income. Mabel has a big sister, Mebon Gedion, 6 years old and she loves playing with her sister. Her favorite things to do is to ride bicycles with her sister at the park. Mabel loves animals, her favorite animal is horses and she is scared of cows! She is a very happy and beautiful little girl, and we are grateful to be apart of the Eye Fight for Kids Family.