Winter 2008
Katy's Story
Told by mum, Chris
The Global Eye.
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?
We were extremely fortunate that Katy was promptly diagnosed by our local hospital, and referred to Great Ormond Street Children’s Hospital in London. A week later her left eye was removed, due to a huge tumour very close to the optic nerve. During that surgery, a small tumour was also discovered in Katy’s right eye, and she was referred to St Bartholomew's Hospital, where she received regular EUAs with cryotherapy for several months.
The next course of treatment - radiation - was felt to be a more proven method, though Katy would probably develop a cataract, as whole eye radiation was needed because of the seeds. She received 20 doses of external beam radiation, during which she celebrated her 3rd birthday. We have since learnt that radiotherapy may also cause secondary tumours later in life.
Regrettably, radiotherapy did not work either, and as a last resort, we agreed to try much stronger chemotherapy, which had powerful effects on Katy’s whole body.
When Katy was diagnosed, we did not have a computer, and knew nothing about Rb. Our first visit to the Radcliffe Ward at Bart's was a huge shock as we realised ALL the children had RB. Whilst sifting through information on the internet for us, my husband’s niece, Lisa, discovered that The Hospital for Sick Children in Toronto, Canada, was having excellent results in treating relapsed tumours like Katy’s. Professor Helen Chan (Oncologist), and Professor Brenda Gallie (Ophthalmologist), had pioneered a new treatment called the “Toronto Protocol”. This involved the use of chemotherapy with cyclosporine, to reverse chemotherapy multidrug resistance caused by P-glycoprotein, combined with laser therapy and cryotherapy.
Whilst we were given no guarantees, we were at last offered a ray of hope for Katy. After several very lengthy telephone conversations to Canada, we made the soul searching decision to fly to Toronto.
We were delighted that Brenda and Helen felt they could help Katy. She received cryotherapy and laser on the first day of each three-weekly treatment, followed by 2 days of chemotherapy with cyclosporine. Being far away from family and friends was very tough, especially as Katy suffered quite a few side effects, constant itching being one of them. However, an EUA 3 weeks into treatment revealed a decrease in the vitreous seeds. As treatment continued, each EUA showed significant improvement. This was beyond our wildest dreams. We just couldn’t quite take it all in!
I lived at the Ronald McDonald House with Katy and my new baby, Harry, who was 6 months old when we first arrived in Toronto. Fortunately, my husband’s work allowed him time off to see us every three weeks, and our spirits were further lifted by a visit from close friends and my parents - fantastic support.
Harry was due to have a routine EUA during our time in Canada, so Brenda agreed to check him. We were stunned to learn he also had a very small tumour, but thankfully he was treated with laser and has been RB-free since! The worst thing for me was having to deal with this shattering news on my own, as John was back in England. My new friends in Canada were wonderful to me during this time.
We were due to stay in Canada for 6 months, but returned home early when Katy’s ‘wiggly’ (external central line) fell out. External lines are seldom used in Canada because the internal Port-a-Cath has no open wound and has far fewer complications. Treatment was producing fantastic results - Katy’s vitreous seeds looked dead and calcified. As Brenda was due to attend a conference in England, she and Helen agreed to stop the chemotherapy and do one more EUA with cryotherapy and laser. Brenda would examine Katy the following month at Birmingham Children’s Hospital, together with Ophthalmologist Harry Willshaw. Harry had worked in Canada previously and knew Brenda. This gave us the confidence to leave Canada and return home.
We continued to see Harry Willshaw every 6 weeks in Birmingham. He was wonderful and remained extremely positive, liaising with Brenda after each visit. Later, we were able to transfer back to Great Ormond Street where Ken Nischall, whom we met in Canada, had just became an Ophthalmology Consultant.
Ashwin Reddy, who trained with Dr Gallie, has recently taken up the post of Ophthalmology Consultant specialising in Rb at The Royal London Hospital, and we are now seen by him annually.
In August 2001, Ken successfully removed the cataract which resulted from Katy’s radiotherapy, and inserted a foldable lens implant.
Katy now wears varifocal glasses, and her distance vision is excellent. The glasses help Katy enormously with any close work, and she now really enjoys reading and writing.
Blood tests performed in Canada located the gene causing RB within our family. It was discovered that John carries the gene, as do a number of his relatives.
Life has once again returned to "normal”. Katy tends to sleep with her eye open, and this has caused some scratches to the front of her eye which can sometimes irritate, so we now use lubricating eye drops every night. This seems to have improved comfort for her. Harry’s vision has also dramatically improved, having worn a patch for several years. Now he is older, he no longer needs to do this. He does wear glasses, but does not feel he needs to.
We were overwhelmed by how such a devastating and bleak situation has been turned around by the fantastic treatment that our children received. We are forever in the debt of Brenda Gallie, Helen Chan and their team in Toronto.
On our return to the UK, we purchased a computer and joined some wonderful online Rb support groups. At the time of Katy's diagnosis, we had no such luxury, and information was difficult to find. I hope our experience can help others who are now having to deal with this terrible childhood illness.
What amazed us the most during our time in Canada was how well the team worked together, how their individual expertise is not seen as rivalry, but as a way forward in the care of Rb. The co-operation between Harry Willshaw and Brenda Gallie meant that we could return to England earlier than expected, and did not have to return to Canada for follow-up. This helped to reduce stress levels and the financial burden of Katy’s continued treatment.
The internet has really opened up access to information globally, and families are more able to learn of different opportunities to save their child’s eye(s).
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