Roger Young Roger Young is the Grandfather of Joshua Wilson. Joshua was diagnosed with Rb in 2001. Here Roger shares his experiences and shows us how Rb can affect all generations of a family.
Joshua's condition is extremely rare, he and his family have experienced many highs and lows in the time since his diagnosis. Roger, whose story was first published in 2006, recently asked us to update our website with more news and further details of the Joshua's continuing treatment. This is his story so far:
Living with RB - A Grandfather's View
In the summer of 2001, my middle daughter had told us she could see a strange reflection in our grandson Joshua's right eye. The rest of us could not see it but then a friend took some photos of the family. Those of Joshua showed a pale yellowish reflection where there should have been red. Events moved quickly then; a trip to the local GP then to the eye specialist at the local hospital. During this visit Martin, our son-in-law, had overheard the specialist say "Retinoblastoma". He looked it up on the internet and then we feared the worst that Joshua had eye cancer, but did not know what this meant.
Diagnosis
Next week Linda and Martin went to Bart's for his first examination under anaesthetic (EUA) of many. We were at home as our youngest daughter and her family were staying with us; thank goodness they were here. My wife took the phone call and immediately was finding it difficult to breath. I was panicking, thinking she was having a heart attack. Our local doctor later confirmed that Ann had gone into a severe state of shock on hearing the news; she recovered quickly however after getting some rest.
Treatment
Joshua had to go straight into chemotherapy at the Goldsmiths ward of The Royal London. I was apprehensive when told they would be putting a pipe (later nicknamed his wiggly) into his heart; this seemed very dangerous to the uninitiated. I was also afraid of what I would see in what was a ward for children with other cancers, mainly leukaemia though, and it was heartbreaking to see so many suffering. Some of the parents we spoke to told us of some tragic cases and I began to think Rb wasn't so bad.
 With the Chemo over we were able to take Joshua's home. There, we had visit from the, then named, Rb Society's specialist nurse, who explained all about the effects of chemo and to expect high temperatures as his immune system would be low. Then she arranged for instant access to the children's ward where he would go into isolation to prevent him picking up any other infections. I found her visit very helpful and we all missed her when she left her post.
During the routine trips to the local hospital which followed, we were glad to be able to help by sitting with Joshua whilst mum had a break. I usually nipped out to the local supermarket for something nice! We also had to look after their daughter Alice who was at school at the time, until her dad came home. We had some very late and frosty trips to and from the local hospital. I became very knowledgeable about being neutropenic and what low platelets meant; I even plotted the results on a graph! I was also impressed with my daughter Linda's calmness throughout this and the next course of chemo. She had become an expert on Joshua's treatment, which gave me comfort.
Play time
During those visits we also helped by playing with Joshua and his trains; he absolutely loved Thomas the tank engine. So I guess we spoilt him a bit by getting a new engine from the collection every time he went into hospital but that's what grandparents are for!!
Understanding
During the following year we had several EUAs at Barts where, apart from the occasional treatment with cryotherapy, things seemed to be going reasonably well. We went to an Annual parents' day event in London where I tried to understand genetics, even tried reading "The Selfish Gene" by Richard Dawkins, so that I might find some answers to why our grandson had, what was called, the hereditary form of bilateral Rb when there was no known history of this illness in either family. It became harder to bear that it was through a mere mistake in copying cell data when he was growing. During one of these days out, Joshua's sister Alice had been given a booklet for siblings to help them understand Rb. It was when she asked if he was going to go blind that, although I reassured her with some thing like "I hope not", I began to start doubting. Until then I'd been reasonably confident of a successful outcome; after all we were in the hands of some the best experts in the field.
I must say, like my wife, I hated the EUAs—still do and even more so lately—the long period of boredom until children begin to go to theatre, then the agonising wait constantly sneaking a look at my watch so Linda and Martin wouldn't see me, thinking he's been a long time—is everything alright? Have they noticed, try desperately not to say anything. Do Linda and Martin look anxious? Then he comes out, has he had cryo, does a young doctor come and say its all ok or are we to wait to see the consultant? Prior to this I try to be calm and reassuring to my wife, Linda and Martin. I can sense that Martin is worrying quite understandably but we are supposed to be the rock that supports the others—who helps us though? Earlier in the day, we found a trip out to the shops for something nice for a snack lunch and chat over coffee helped us both.
After the EUA result, it was my task to get on the mobile to let the family know the result; bad results were as expected the worst to tell. Especially when we heard later that year that the second chemo had failed and enucleation of the right eye was the only solution. I knew my other daughters would be badly affected by this news.
Bombshell
When that fateful day arrived, I tried to be positive outwardly. We had to walk to theatre through the ward full of families waiting for EUAs. Joshua had an arrow drawn over his right eye. I was feeling sorry not only for Joshua but also for the other parents. After his operation we followed him to the recovery ward, Linda said to me "he has lost his right eye hasn't he Dad?" I said "yes that's right" then I'm afraid I lost it and had to fall back as tears came into my eyes!!
Later when awaiting his prosthetic eye, he was so upset that other children were staring at him as he hadn't got his right eye.
Staying Positive
It's not been all bad though. We were encouraged to submit Joshua's name for "A little Star" award sponsored by Cancer Research UK, and were amazed and delighted when he won it. This led to lots of media interest from local TV and national papers. Then an opportunity to give wider publicity to Rb, with CHECT's support, Linda, Alice, Joshua, my wife and I had an amazing day at the GMTV studios where we met Penny Smith, Fiona Phillips, Eammon Holmes and Dr Hilary, who were all so friendly and made us feel so welcome. Linda was amazing and explained her experiences to date and the importance of the red-eye photo. She insisted on having her photo taken with Dr Hilary-I wonder why? Whilst there, the BBC TV and radio stations also wanted to do interviews, and so after getting up at 5 am, it became a very long tiring day but we felt it worthwhile if it alerted other parents to an early diagnosis.
Just after enucleation, Joshua enjoyed a trip to Euro Disney with the rest of our youngest grandchildren and that was a bit difficult for him, being conscious of other children looking at him. We also took him to several trips on the Watercress Line's "Thomas days out", and more recently to similar Xmas visits to Didcot. It was lovely to see him absolutely enjoying being on his trains, but sad to think he'll never be able to drive one!
This all seems along while ago now, since after this we learnt he'd have to have beam radiotherapy at Barts. I found some comfort in being able to accompany Linda on the long commute in to London on the underground, but after a while, it became very wearing for us all. Still, we were given some optimism for a successful outcome, and so it was all worthwhile. Next year went well and he was given 6 months until the next EUA.
I curiously felt less confident about the outcome on this occasion than on previous EUAs, and when we were asked to stay and see the consultant, my worst fears were confirmed. I am lucky that Linda wants me to go with them to hear what they have to say. Sometimes I think mum and dad can be too traumatised to think straight, I often find it difficult to say anything sensible, but it does help a lot to be there.
Now we enter a phase of knowing the options for saving his sight are diminishing and hoping and praying ( which I've not done since I was a boy in the Blitz) that some miracle will bring success at last.
Highs and Lows
After the bad news at the end of 2005, Joshua had a plaque fitted to his remaining eye just before Christmas. We were thinking why is it always just before Christmas?
Then 2006 came and after several EUAs we were approaching the end of the year in confident mood; we actually bought some chocolates for a car park attendant who had been so kind to us throughout our visits to The Royal London. We were even beginning to think in terms of him attending the wide-awake clinics! But it was not to be, and once more, just before Christmas we were given the bad news that his retina had partially detached and the original tumour was growing again. Two more chemos combined with laser treatments were given followed by open cryotherapy in the New Year.
We seemed to crawl through 2007 and must have become one of the most frequent visitors to the Buxton Ward at The Royal London. Then in September we were told the tumour was again active with numerous seeds. Faced with the choice between further treatment with a different chemo drug or enucleation, it was now that his Mum & Dad needed to ask for a second opinion at The Birmingham Children's Hospital.
Second Opinion
Then, after a wonderful day out with the Red Arrows courtesy of Make A Wish, the Consultant at Birmingham agreed that this eye was very diseased and offered another chemotherapy combination option of 2 different chemo drugs in with sub-conjunctiva chemo. After carefully considering both options on offer the family decided to go with the treatment in Birmingham, which would involve 6 courses.
At the next EUA, it didn't appear to be working, but to be fair to Joshua the team carried on with one more treatment. Now once more his hair was coming out and, being older, he is very fed up with always going to hospital.
Christmas break
The next EUA came in November last year when we all thought we were going to have bad news, Linda said that as she left him in the theatre, she could see it in the consultant's eyes that he too was fearful of the result. We hugged each other for what seemed an eternity and was the longest 35 mins I've ever experienced. Then, to our utter surprise, we had good news!! The tumour was shrinking and the seedlings had reduced. There was still a long way to go but at least the family were able to enjoy Christmas.
All went well until after the 5th treatment earlier this year, when we were again given bad news. The tumour was growing and throwing out seeds; also the retina had once more partially detached. As the tumour was able to grow whilst chemo was being given it seemed pointless to carry on and chemo was stopped. So, after 7 years battling to save his sight, it seemed that we now had to come to terms with Joshua going blind. We had for some time planned to send the family to Euro Disney before he went blind and now this was looking unlikely as the date for going was some two months away.
Hopeful 
Then within a few days, we heard about a revolutionary new treatment, trialled in New York on children who risk blindness because all other treatment has failed. Joshua's Rb is exceptionally aggressive and very rare and this treatment had encouragingly successful outcomes. As I write this update, Joshua is planned to have his first of three treatments in New York at the end of March 2008. The decision to go for this last attempt is supported by his medical team in the UK. As his Mum said, she couldn't sign a consent form to remove his remaining eye without trying this new treatment. We now once more are on the roller coaster ride of emotions, which affect so many families with childhood cancers, and all are hoping and praying that at last something will work! Within time I hope to update this story and let you know how things work out for Joshua. |
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