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Ann Young

Ann Young with grandson Joshua

Ann Young is the grandmother of Joshua Wilson. Joshua was diagnosed with Rb in 2001. Ann accepted our invitation in 2007 to write an article for our newsletter. Here, she tells us, frankly and honestly about how Rb has affected her life. For an updated account of Joshua's treatment read also Roger Young's story.

 

Living with Rb - A grandmother's view

 

My grandson Joshua Wilson has bilateral retinoblastoma. He has been through most treatments, chemotherapy twice, cryotherapy, enucleation, radioactive plaques and lens sparing radio beam therapy.

Joshua was diagnosed with Rb in July 2001 when he was 15 months old. I knew that something was seriously wrong with his right eye when my daughter Linda and son–in–law Martin took him to Bart's Hospital on that fateful day. The next thing I heard was the telephone ringing and Linda crying to me on the phone, saying "Mum he's going to go blind". She then explained that not only was there a large tumour in his right eye, but he also had small tumours in his left eye. She was in a terrible state. I had never heard of Rb and went into shock as Linda said the word "blind".

Everything happened so quickly after the diagnosis. My first visit to the Royal London hospital with Linda and Martin was for Joshua to have a CAT scan before he started chemotherapy, to ensure that the cancer hadn't spread to his brain. As you can imagine, I was terrified as to what would be found. We had a long worrying wait until the oncologist thankfully gave us the all-clear.

I didn't know anything about chemotherapy, and before I had time to find out about the treatment, Joshua was in the cancer ward at the Royal London having a line put in him. I found it hard to cope with seeing my daughter having to go through so much with her little baby boy. It was a blessing that Joshua didn't understand what was happening to him. I didn't realise how much Joshua having chemotherapy would affect me. First of all it broke my heart to watch him lose his hair and to see all the toxic medicine put into him. Also to be in a cancer ward with him was very upsetting. It also had such an effect on all our family especially Joshua's sister Alice. Linda had to go the local hospital the moment Joshua developed a high temperature. I spent weeks visiting the local hospital to relieve Linda so she could relax and also to pick up Alice from school. I remember thinking, as I was comforting Joshua on my lap, when will he be free from all this?

After the initial chemotherapy, Linda and Martin had to take Joshua to Bart's for examination under anaesthetic (EUA) at the Wednesday clinics. After about two appointments, Linda suggested that I should go with them to find out how the day progressed. I found it helpful and while he was being treated at Bart's, I went with Linda to the anaesthetic room to stay with him before the EUA.

In the days and weeks after the first treatment that he had, I can remember feeling very tearful and not coping well at all. I would look at other children of Joshua's age and think why it should be my grandson that had to suffer. It has helped me to come to terms with Joshua's condition by being with Linda and Martin at the EUAs and talking to other families and hearing their stories. I soon began to realise that some families had more heart-breaking stories than ours and that every case of Rb is different.

After two courses of chemotherapy Joshua seemed to be doing so well. I began to think that he would be lucky and keep both of his eyes. However, sadly, when he was three years old, we were told that seedlings had appeared in his right eye and the only option was enucleation. We had a week to agonise over the decision as to whether to go ahead with the operation, but we all knew that it was our only option if we were to save his life. I found it hard to imagine my little grandson with only one eye. Linda and Martin were so upset, as were we all.

At the time of Joshua's operation, there had been so many changes in staff. We had lost our family support worker plus our play specialist, both of whom had supported us from the day Joshua was diagnosed. I was very frightened of how Joshua was going to look when he had his eye removed. I knew that I must support Linda and Martin through this awful time, and did not want to be in tears every time I spoke to Linda as she was suffering enough. I rang the replacement support worker, who tried to help me through my fears but it didn't make me feel any better.

The day of the operation was the worst so far. During the walk to the operating theatre, I felt frightened, sick and afraid of the unknown and of how our little Joshua would look after the loss of his right eye. I tried not to be in tears for Linda and Martin's sake, we were all feeling the same. The next day, Linda did not want to look when he had his eye uncovered and I said would look for her. It didn't look as bad as I had imagined, but I found it hard to come to terms the fact that Joshua had lost his eye. He recovered well, although we had a tough time with him before he had his prosthetic eye fitted. It took me a while to deal with his prosthetic eye, but in time I learnt how to handle to it and put it back in for him. I still don't like to see him without his prosthetic eye.

We have had many high and low times with Joshua. All I can remember of Joshua's baby years is being with him either on the cancer ward, or at the local hospital with high temperatures, blood or platelet transfusions. We had six months respite last year and we were all on a high again thinking at last that, after we had our next appointment, he would be able to go to the Friday clinic meaning no more anaesthetics. Again that was not to be as, just before Christmas, we were told that one of the tumours in his remaining eye had started growing again and it had also detached the retina. So once again Joshua had another radioactive plaque fitted.

I found the Wednesday clinic a most stressful day. Only parents and grandparents attending these clinics know what it is like. As the children go to theatre, the ward gets quieter as all the parents wait fearfully for their child to be brought back to them. The hardest part of all is waiting for one of the doctors to say that everything is going well or that the doctor would like to speak to the parents; then you know the news is not good. I think every parent does not want to hear the latter.

I have been through every treatment that Joshua has had so far, through all the good times and bad times. I feel stronger now than I did at the beginning. I am lucky that I live near Linda and Martin to support them through all of Joshua's treatment so far. We all hope and pray that there will be a successful outcome after all Joshua's been through.

 

Joshua's journey was updated by his grandfather Roger Young in 2008. Read about his progress here.

 

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