Brady’s Story – told by his mother, Lori.
Brady spent his first Christmas in hospital, receiving chemotherapy. He had a rough time with high fevers and low blood counts. After the fourth cycle, daily G-CSF injections dramatically improved his ability to tolerate the drugs, but he still had a difficult time with sickness and sinusitis during the last five cycles.
Chemotherapy ended on April 23 2006, and the next EUA found stable tumors. Eight months of intensive chemotherapy had slowed Brady’s development, but once treatment ended, he began to progress again. Jeff and I had hope for the future.
However, in June Dr Murray found tumor activity in both eyes. Aggressive laser controlled them for three months, but by September, both eyes were filled with seeds too numerous to count.
Brady began 14 days of external beam radiation on September 21st. He was admitted to hospital after only a week, continuing daily radiation while also receiving high dose antibiotics to fight a staph infection. At the next EUA, Dr. Murray said his response to treatment was “phenomenal” – no active cancer. Jeff and I were elated, and prepared for the holidays with lighter hearts.
The joy was short-lived however. Brady’s EUA on 5th January 2007 revealed an extensive relapse in both eyes. Dr Murray injected carboplatin chemotherapy into the tissues surrounding both eyes, and advised a repeat course of chemotherapy begin the following Monday. Brady’s oncologist at Jackson Memorial Hospital matter-of-factly stated “if you do additional chemotherapy and it works, it will be a miracle”.
Through researching treatment options, I learned of Prof. Brenda Gallie in Toronto, and her experience with recurrent retinoblastoma. I called Abby at Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) the Sunday after Brady’s relapse, and she arranged for Prof. Gallie to call me that day.
Everyone expressed concern about us traveling to Toronto for chemotherapy, but also recognized the Toronto Protocol provided the best chance to save one or both of Brady’s eyes. Our doctors agreed to accept guidance from the doctors in Toronto, while administering the Toronto Protocol in Miami.
The Toronto Protocol is a strict regimen of pre-meds, three chemotherapy drugs, the antibiotic Cyclosporine A, fluids and supportive medications to reduce side effects. This was a new, testing experience for the doctors and nurses in Miami, but they worked patiently, consistently and effectively with colleagues in Toronto to ensure optimal care for Brady.
During the Toronto Protocol, Dr Murray gave Brady two focal chemotherapy injections (not part of the Toronto Protocol). At each EUA, he noted bleeding in Brady’s eyes. As he had never seen such bleeding before, he asked Prof. Gallie to see Brady in Toronto.
Prof. Gallie found no new or recurrent tumor activity in either eye, and felt some further vision might be recovered in his right eye. However, she explained that bleeding and distorted anatomy in his left eye would challenge future evaluation of tumor activity. It appeared that enucleation of the left eye would be in Brady’s best interests.
This wasn’t the best news, but it certainly wasn’t the worst. I was almost prepared to hear it. I think the good news about the right eye balanced things. We still had a victory – we saved one eye!!
Brady’s left eye was removed without complication on Tuesday 6th August 2007. He has made remarkable progress since then, as if his body knew the sicker part of him was gone.
Brady has been cancer free since completing the Toronto Protocol on 1st April 2007. His right eye has only improved, and the blood completely resolved within six months. The future is looking very bright.
Brady has developmental delays and sensory issues because of all the treatment and hospitalizations, but has made exceptional progress since ending treatment. He is also doing very well in school
Brady’s unique story shows how all parties involved – parents, friends and physicians – came together to form one vital team that not only ensured my child had the best care, but also enabled this care to be received close to home. Dr. Murray, Dr. Gallie and Abby are our heroes. Thank you just isn’t enough.
Never underestimate the importance of networking, friendship and support. Always ask questions, never give up and always have faith. If you don’t like the answers you hear, don’t be afraid to look outside the box and try something new or different. When you are faced with life-changing decisions for your children, you may only have one chance.
Photos still show a white glow in Brady’s eye, but we know this is just a reflection of the dead, calcified tumors that remain. In a way we like to see this glow – it tells the story of Brady’s survival, and the wonderful outcome he has had, against all the odds.