support Heart Transplant For 19yo

Brodey was born with a rare genetic cancer of the eyes, retinoblastoma. His diagnosis was bilateral retinoblastoma as a total of 9 tumours, were found in both eyes at 5 days old. The tumours occur on the retina at the back of the eye and are not visible without dilating the pupils with eye drops and shining a bright light onto the Retner. We were a family of three from Wellington when Brodey was diagnosed and the ophthalmologist referred us to the child oncology Centre (CHOC) in Christchurch. We went straight to CHOC and spent the next few days enduring many tests. We met the entire oncology team and were told he needed chemotherapy to save his sight or we could choose to have his eyes removed immediately, avoiding the side-effects of chemotherapy. Having had my sight until age 6 before I went blind, I wanted to spare my son the Challenge of living with blindness, sO I felt it was worth trying the treatment. We agreed to trY chemo and sTArTED at 16 days old, followed by 6 monthly doses. The (epirubucin) dRUG inCLuDED in his pROTICOLe, has a 10% risk of cAUSing a heart defect around adolescence to early adult hood. Each month they would administer special eyedrops to dilate his pupils large enough to see the lesions on his Retner. Children are always gIVEN a GA as they are unable to tolerate the bright light the surgeon uses to examine the eye socket. So this is how the oncology team would check the impact of each dose of chemotherapy. The first course of chemo finished when he was six months old and they checked him monthly until he was 10 months old. The oncologist decided to wait 4 months tlhis next check up. ROUND his first birthday 2 months later, his dad saw a white spec shining in the light when Brodey would look towards tHE light. We went for a review at our local hospital in Wellington where the oncologist observed the same thing and was very concerned. So he sent us back to Christchurch urgently and Brodey’s oncologist discovered an aggressive relapse in both eyes. The eye that was showing a white spec in the light, had a tumour large enough to push out the Retner and completely detach it from the eyesocket . The tumour had also spread up the optic nerve towards the brain. So the right eye had to be removed immediately to spare his life. His oncologist advised us, it was possible that he was terminal because the tumour had been surrounded by spinal fluid and may have seeded into the spinal fluid. He said it was quite possible that seeds of tumour could have circulated to other places in the body via the spinal fluid and even if A tumour wasn’t detectable in that moment, a tumour could likely present soon enough, apparently it was crucial Brodey have another 6 month course of chemo plus 30 doses of radiation whether we chose to keep his left eye or not. We chose to keep the eye and we did it again! This time the strength of chemo was much stronger and the drug known for causing a heart defect, was replaced by a stronger drug. We were advised that there was a 40 to 50% chance, Brodey would develop a heart defect around early adult hood. We were also advised that he would be very immune compromised, May experience lengthy recovery periods from colds or Gastro bugs, struggle with eating due to repetitive vomiting and lack of appetite as well as possible delays in growth milestones. All those things happened in spades. Just 3 months into his second course of chemotherapy, he stopped gaining weight and despite the nurses’ efforts to insert 8 nasal gastric tubes of which he ripped out every one, The team decided to surgically insert a feeding peg into his stomach so we could drip feed him on a high calorie formula each night. Brodey was assessed as legally blind at age 3. Fast forward through years of trialling all sorts of strategies to teach him how to appreciate food, many month long periods spent off school recovering from a cold or Gastro bug and loads of days off School due to eye fatigue from his vision impairment, to August 2017, when Brodey was diagnosed with a leaky left valve in his heart. Fast forward another three years to April 2020 and a cardiology check up, reveals that brodey has heart failure. His heart condition has deteriorated so much that the cardiologist believes a heart lung transplant is his only chance of surviving more than another year of his life. We are waiting for a donor but plan on seeking alternative treatments as the odds of finding a donor is only 1% at best. Brodey had to quit his job and is completely reliant on a disability pension. Whatever you can donate would enable him to try alternative treatments which could extend his life. We would be extremely grateful. This was writen by brodeys mum, all money is directly paid into the bank account of sidney Sarkis who collects it on behalf of brodey this is because you must be an australian citizen to collect money. sidney is a trusted family friend and all money is given to brodey