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The Global Eye Winter 2008

In The Spotlight Brady's Story Told by mum, Lori Simmer

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Welcome      Eye Contact    Art for Eyes Paint Day    Toronto Bluejays Game    David M Bailey Concert    4th Annual Blind Ball    Harry’s Farewell.    Research Matters    Toronto Protocol    Eyes on the World    World Rb Awareness Week    In the Spotlight    Katy's Story    Brady's Story    Focused Care Q&A    Implants..    The Art of Child Life   Going to the Ocularist.    Snap Shot    Honduras.    World Rb Citizen    Timothy Murray MD    Kids Corner    Valentine Fun..    Points of View    Have Your Say.    Diary Dates    What's Happening?

Brady Lawrence Simmer was born on May 30, 2005, weighing  7 lbs. 3 oz.  He appeared to be a happy healthy infant, making great progress throughout his first 3 months of life.  However, I repeatedly expressed concerns that Brady was looking up frequently, not focusing on me and his left eye appeared to be lazy.  The pediatrician told me not to worry, that infants typically don’t focus until 4 months. Approximately 2 weeks after Brady’s 2 month well check, I noticed that his pupils appeared white in certain lighting.  On Friday, August 27, 2005, Brady’s pediatrician finally referred him to a pediatric ophthalmologist, who diagnosed bilateral retinoblastoma.  The following Monday, MRI and CT scans confirmed the diagnosis.

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Two days later, Brady was seen at Bascom Palmer Eye Institute in Miami, Florida.  Dr. Timothy Murray told my husband, Jeff, and I that Brady’s was the worst case he had seen in a decade.  I understood the severity of Brady’s retinoblastoma; but told Dr Murray I only wanted to explore enucleation if it was the LAST resort.  A lumbar puncture and bone marrow biopsy thankfully showed no signs of distant spread outside Brady’s eyes.  Brady began treatment immediately.  He received nine cycles of laser together with combination chemotherapy.  After his second treatment, both retinas detached and folded under the massive tumors, sticking to the lenses.  Miraculously after the third treatment, both retinas reattached, and by the ninth EUA and laser treatment, they had unfolded.  Brady spent his first Christmas in hospital, receiving chemotherapy.  Following the fourth cycle, he  had a rough time with high fevers and low blood counts.  A course of daily G-CSF injections to boost his immune system dramatically improved Brady’s ability to tolerate the chemotherapy, but he still had a difficult time with sickness and sinusitis during the remaining 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 therapy controlled them for the next three months, but by September, both eyes were filled with tumors too numerous to count.  Brady began 14 days of external beam radiation on September 21st, just over a year after diagnosis.

Brady was admitted to hospital after just one week.  He continued daily radiation while also receiving high dose antibiotics to fight a staph infection.  At the next EUA, no active cancer was found in either eye.  Dr. Murray used words like “phenomenal” to describe Brady’s response to treatment.  Jeff and I were elated, and prepared for the holidays with lighter hearts. The joy was short-lived however.  Brady’s EUA on January 5th 2007 revealed an extensive second relapse

in both eyes.  Hoping to shrink the tumors again, 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 very matter-of-factly stated “if you do additional chemotherapy and it works, it will be a miracle”.  Well, that just wasn’t good enough. Thankfully, I had researched alternative treatments and ocular oncologists around the world.  I became familiar with Prof. Brenda Gallie in Toronto, and her experience with recurrent retinoblastoma.  A week before our devastating news, I made contact with retinoblastoma survivor Abby White, through the retinoblastoma information website she maintained from her home in Oxford, England.  On the Sunday after Brady’s relapse, I called Abby with the news.  She expressed concern about the potential for the planned chemotherapy to be effective when it had already failed for Brady.  Abby works closely with Brenda Gallie, head of the Retinoblastoma program at Toronto’s SickKids Hospital, since the pair had co-founded Daisy's Eye Cancer Fund several years before.  Advising that I speak urgently with Prof. Gallie, Abby arranged for her to call me that evening.  Prof. Gallie advised that Brady not be admitted for chemotherapy the following day.  She explained that, while the planned chemotherapy involved the same four drugs as those used in the Toronto Protocol, doses are higher and given over a shorter period of time in Toronto.  The Toronto Protocol has produced excellent results for many children with advanced intra-ocular retinoblastoma such as Brady’s, and would give a 60% chance of saving each eye.  For us, the decision was a no-brainer.  This was our last treatment option, and WE had to give Brady the BEST LAST CHANCE we could. Over the next few days, the doctors in Toronto and Miami discussed Brady’s care.  Everyone expressed concern about traveling to Toronto for chemotherapy.  Brady and I would be leaving our home, family and support system for up-to 6 months, and Jeff would have to remain here to work.  Traveling back and forth would not be advisable for a child with compromised immunity.  Dr. Murray didn’t want to see us go, but understood that we’d only stay in Florida if our Miami team agreed to offer the Toronto Protocol here.  All parties involved recognized that the Toronto Protocol provided the best chance to save one or both of Brady’s eyes, and 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 their colleagues in Toronto to ensure optimal care for Brady.  During the Toronto Protocol, Dr Murray gave Brady two more focal chemotherapy injections (not part of the Toronto Protocol).  At each EUA, he noted bleeding within Brady’s eyes, but was unsure of the cause.

Brady completed the Toronto Protocol on April 1st 2007.  His first EUA after this showed no active tumor, but the previous relapses put nerves on edge.  Jeff saw a story on ESPN about Derek Fisher’s daughter, Tatum, whom had recently received experimental treatment for retinoblastoma.  I immediately emailed Dr Murray to ask if this might be an option for Brady, and he agreed that we should see Dr. David Abramson in New York.  On May 29th, the day before his second birthday, Brady was examined by Dr Abramson.  After a short EUA, the doctors concluded that he was not a candidate for intra-arterial chemotherapy.  Moreover, an electroretinography (ERG) test revealed no signal from either retina to the brain, and I was told that Brady was “irreversibly blind”.  I was totally unprepared for this.  Brady’s 2nd birthday passed in a fog of despair, as we returned to Florida, devastated by the news.  We had always maintained belief that Brady had some vision worth saving. After a very dark week, I emailed Dr. Murray to tell him of our experience in New York.  He had already received post op reports, but explained that Brady’s retinas had been detached during the EUA in New York, causing the flat ERG result.  Brady’s retinas had detached and reattached before, so the possibility for vision continued.  At an EUA in Miami one week later, Brady’s eyes were stable, with no active tumor and no increased bleeding.  As Dr Murray has never seen such bleeding before in a child with retinoblastoma, he asked that Prof. Gallie see Brady in Toronto before the next scheduled EUA on July 20th.  Prof. Gallie has treated a number of international children following extensive therapy outside Canada, and has more experience with ocular hemorrhage.  She and Dr. Murray discussed Brady’s case while together at an ocular oncology conference in Italy in late June, and we prepared for the long trip to Toronto.  Prior to our departure, Dr. Gallie asked me why I so strongly believed Brady had some vision in his right eye.  Albeit very minimal and peripheral, Brady tilts his head to the right and is able to see something.  We have never known how much he sees, but it has always been my position that “something” is better than nothing. Abby White visited us just before our departure for Canada,   She gave us a small, completely silent ball, which lights up with many vibrant colors.  As she moved the glowing ball around the circumference of Brady’s head, he reached for it when it was held on the far RIGHT side of his right eye.  He grabbed it every time, and found it on the floor without scanning with his hands.  This very clearly demonstrated that Brady could see.

During Brady’s EUA at SickKids on Monday, July 9th, Prof. Gallie found no new or recurrent tumor activity in either eye, and she felt that some further vision might be recovered in his right eye.  However, she explained that tumors and treatment had destroyed the

left eye, and the detached retina showed little promise for re-attachment. The hemorrhage and distorted anatomy would challenge future EUA 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 this.  After all, the oncologist in Miami said it would be a “miracle” if chemo enabled Brady to keep his eyes.  Anticipating the loss of the left eye, we returned to Miami.  I think the good news about the right eye balanced things.  As far as I was concerned, we still had a victory - we saved one eye!! I thought we had a few months to prepare for surgery, but at the next EUA on August 2nd,  Dr. Murray explained that assessment of tumor activity was too difficult, and he scheduled the enucleation for Tuesday, August 6th.  I was NOT prepared for this to happen so soon.  Tuesday came and went very quickly.  Brady’s left eye was removed without complication and he has healed thoroughly.  He has made truly amazing progress since the enucleation, almost as if his body knows the sicker part of him is gone and he just has to focus on that right eye. Brady has been stable since ending chemo in April 2007.  The left eye has been removed, but the right eye has only improved, and the blood has completely resolved.  We closely watch the extensive inactive vitreous seeds, but Dr. Murray says the eye “has never looked better”.  This is the longest Brady has been stable – almost 9 months.  I believe the Toronto Protocol finally got Brady’s cancer under control.  We are not out of the woods yet, but the future is looking pretty bright.  Brady started school in May, 2007 and is doing very well.  He has developmental delays and sensory issues because of all the treatment and hospitalizations, but a team of dedicated therapists continues to help him make daily progress.

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.  We would have still done the Toronto Protocol, but a friendship nurtured between Abby and I via the internet helped me communicate urgently with Dr. Gallie, and things happened more quickly and smoothly.  When push came to shove, all egos departed.  Dr.

Murray and Dr. Gallie and their teams worked together, across international borders, to give Brady the best last chance at saving his eyes. I would tell others in a similar situation to 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 are given, 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.  Without the efforts of Dr. Murray, Dr. Gallie and their teams, I don’t think we would have had this good outcome for Brady.  Dr. Murray and Dr. Gallie, You are our heroes.  Thank you just isn’t enough.  And Abby, thank you for your friendship.  It means the world to this family.  Your dedication to the retinoblastoma community is invaluable.  To read more about Brady, please visit his personal website, or feel free to contact Lori Simmer by email at llm51570[at]yahoo.com

Brady Simmer's Website

Read Katy's Story

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