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| KATY AND HARRY "Our Twin Rays Of Hope" Katy and Harry's story is written by their mum, Chris. |
| Katy was diagnosed with bilateral retinoblastoma (RB) in November 1995 just after her 1st birthday. We had no knowledge of RB at the time. We just remember seeing the ‘cat’s eye’ reflection in her left eye one day when she was sitting in the corner of the room under the light. We had no idea how this event was to change the rest of our lives. We were extremely fortunate that Katy was promptly diagnosed by our local hospital, and referred to Great Ormond Street Hospital (GOS) in London. She unfortunately had a huge tumour very close to the optic nerve in her left eye, and a week later her eye was removed. It was discovered at the time of Katy’s enucleation that she also had a small tumour in her right eye. She was then referred to St Bartholamew's (Bart's) Hospital, where she received regular EUAs with cryotherapy for several months. After a while, Katy's check-ups were spread out to 6 months, and we started to relax a little. 18 months later, we received the devastating news that she had relapsed with vitreous seeding in her right eye. After several courses of chemotherapy, it was evident that this method of treatment was having no effect on the seeds. We were then advised to try a radioactive plaque which would be fitted to the back of Katy’s eye. Unfortunately, this treatment was also unsuccessful. The next course of treatment - radiation - was felt to be a more proven method, although the side effects were more dramatic. In Katy's case, she would develop a cataract, as whole eye radiation would have to be administered because of the seeds. Katy was given 20 doses of external beam radiation during which she celebrated her 3rd birthday. We have since learnt that this treatment may also cause secondary tumours later in life. However, when you are dealing with your daughter’s eye-sight, you have to try everything! Regrettably, this treatment also did not work either, and as a last resort, we agreed to Katy being given much stronger chemotherapy which had powerful effects on her whole body. When Katy was diagnosed, we didn't have access to a computer, and our first visit to the Radcliffe Ward at Bart's came as a huge shock as we realised ALL the children were being treated for RB. My husband John's niece, Lisa, spent many hours searching the Internet sifting through tons of information. She discovered that The Hospital for Sick Children in Toronto, Canada, were having excellent results in treating relapsed tumours like Katy’s. Professor Helen Chan, the Oncology Consultant, and Professor Brenda Gallie, the Ophthalmology Consultant, had pioneered a new treatment called the “Toronto Protocol”. This treatment 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 with Professor Gallie and Professor Chan, we made the soul searching decision to fly to Toronto to see them. We were delighted when Dr. Gallie and Dr. Chan said that they thought 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 as an added drug. Katy didn't have an easy time with the treatment - she suffered quite a few side effects, constant itching being one of them. The fact that we were far away from family and friends didn't make life any easier, but 3 weeks later, during her EUA, the vitreous seeds in her right eye had decreased. As we persisted with more treatment, each EUA showed significant improvement. As you can imagine, this was beyond our wildest dreams – we just couldn’t quite take it all in! All in all, we were in Canada for 4 months. I lived in the Ronald McDonald House for Oncology patients, with Katy and my new baby, Harry, who was 6 months old when we first arrived in Toronto. Fortunately, John’s work allowed him to come out to see us every three weeks. During our stay in Toronto, our close friends came out with their daughter, Kirstie - Katy's best friend. Next came my sister with her two boys and, after they went home, my Mum and Dad came out. As you can probably appreciate, this level of support was fantastic, and really lifted all our spirits. We could even pretend to be tourists for a while! Whilst staying in Toronto, Harry's routine EUA for Bart's came through, so Dr. Gallie agreed to check him. We were ‘stunned’ to find out that Harry also had a very small tumour. Thankfully, he was treated with laser and has been RB-free since! The worst thing for me at that time was that John was back in England and I had to deal with this shattering news on my own. Thank goodness I had made very good friends with some other families who were having the same treatment as Katy. My friends 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. They seldom use external lines in Canada because the internal Port-a-Cath has no open wound and far fewer complications. Katy’s treatment was having fantastic results. As far as Dr. Gallie could see, Katy’s vitreous seeds were dead and calcified, and since Dr. Gallie was due to attend a conference in England, both Dr. Gallie and Dr. Chan agreed to stop the chemotherapy and do Katy’s EUA with cryotherapy and laser one more time in Canada. Dr. Gallie would then examine her at Birmingham Children’s Hospital, where Ophthalmology Consultant Harry Willshaw would continue Katy’s care. Harry Willshaw had worked in Canada previously and knew Dr. Gallie. This gave us the confidence to leave Canada and return home. Dr. Gallie came to England one month later, and she and Dr. Willshaw looked at Katy together to bring him up-to-date about Katy’s treatment! We continued to see Harry Willshaw every 6 weeks. Dr. Willshaw was wonderful and remained extremely positive, liaising with Dr. Gallie after each visit. We then heard that, due to some changes, we were able to transfer to GOS where Ken Nischall, whom we met in Canada, had just became an Ophthalmology Consultant. We have been seeing Dr. Nischall ever since. In August 2001, Katy had an operation to remove the cataract which resulted from her radiotherapy treatment, and insert a foldable lens implant. This was performed at GOS and everything went extremely well. In fact, Ken lectures about Katy's case all over the world. She was his first guinea pig using the foldable implant! Katy now wears bifocal glasses (soon to try varifocal) and her distance vision is excellent. The bifocals help Katy enormously with any close work. In fact, we find that Katy now really enjoys reading and writing since her sight improved. Naturally, Katy is checked regularly in clinic and periodically still has EUAs. Blood tests were performed during our stay in Canada that located the gene causing RB within our family. It was discovered that my husband carries the gene as do several members of his family. 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 Dr. Gallie and Dr. Chan and their team in Toronto. We are still under the care of Ken Nischall at GOS, and life has once again returned to "normal", though we still have the odd "panic" with the children. Katy sometimes has pain in her eye, but Ken tells us her implant is in a good position and the eye looks exactly the same now as it did when he performed the operation! She apparently sleeps with her eye open, and this has caused some scratches to the front of her eye, so we now put lubricating eye drops in every night. This seems to have improved comfort for her. Harry wears a patch 2 hours a day, as the scarring from his laser affects his central vision, but his vision has dramatically improved. Since returning from Canada, we have purchased a home computer and joined 2 wonderful support groups for RB. At the time of Katy's diagnosis, we had no such luxury, and information was quite difficult to find. Although my husband prefers not to read other people's experience of RB, I find it very comforting and hopefully our experience can help others who are now having to deal with this terrible childhood illness. Treatment for RB is changing all the time - certainly, there are treatments available now that weren't around when Katy was diagnosed back in '95. |
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| "Friends" by Enya |
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| ORPHANS OF THE CANCER STORM |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |