Saturday, 30 April 2011
Somewhere over the Rainbow
Jon Canning, Joshua’s dad, talks about his time at Rainbow House over the years.
We have been fortunate to stay at The Sick Children’s Trust’s Rainbow House twice over the last two years, as our ten year old son Josh suffers from a rare Crohns like inflammatory bowel disease.
The first time was for a couple of weeks during the summer of 2008, and then we had to use the house again last year for a week in October when Josh was readmitted to Great Ormond Street Hospital for an operation.
We first found out about Rainbow House when Josh was moved from a cubicle, where we were allowed to stay with him overnight, onto the main ward, where we couldn’t. He had been in hospital for four months at that point and had to remain there for another four months, as he was not responding to steroids or any other treatment. As we lived in Kent we were obviously concerned about being there for our son and without being able to stay on the ward, we just didn’t know what to do until the hospital recommended we try the charity.
The second time we stayed there was after Josh’s bone marrow transplant. The doctors felt that a transplant was the best way to control his bowel inflammation which also affected his lungs, knees and stomach to varying degrees. As he was the first ever Gastro / BMT patient at Great Ormond Street Hospital, we were obviously concerned and wanted to be as close to him as much as possible.
During this time we stayed at Rainbow House so we could have some family time together as Josh recovered. Although it was quite difficult with him being in a wheelchair, the times that Josh did join us at the house was wonderful. It helped him to relax, become more independent and gave him a safe haven away from the hospital which he really looked forward too. Even when he was tired he’d ask to go to the house in order to relax. I think just being there gave him a semblance of normal life again and I really believe it was a vital step towards his rehabilitation.
Sitting on a sofa and watching TV in a living room might not sound like much, but compared to lying in a hospital bed in a room on a ward, it is heaven.
The house was also a good base from which to take our younger son out and about in London, as a rare treat when Josh was too tired to spend time with him. Being a huge fan of wild animals, a visit to the Natural History Museum was described as the best day out of his life – it was so nice to let him just be a child again and not focus on his brother’s illness for just one day.
Staying at Rainbow House also allowed us to eat properly without the expense of having to eat out every day. Using the kitchen meant Josh had ‘proper’ food rather than the hospital meals which are more limited in choice – especially with his dietary requirements having been nil by mouth for four months. On the several occasions we managed to all eat together it was fantastic, as we were often always running around that being able just to relax and cook inside the house really lifted some of the strain on us.
Staying at Rainbow House also helped him to learn to interact with his younger brother again after so many months apart. This was especially important they missed playing with each other immensely. To see our two children play there together, relax and watch TV and it really did feel like a ‘Home from Home’, to such a degree that both children called it home. Our youngest told everyone on the train on the way up here once that we had a home in Bromley and a home in London. I suspect they thought we owned two houses and were very rich!
Our house manager Sandra was also a great support. She was the perfect balance of sociable, friendly and warm yet tough enough to command respect and ensure house rules are followed. She was great with our boys and very helpful from day one in every respect.
Josh is currently recovering well although he has lost much of his hearing due to the drugs he is taking and he is blind in one eye as a virus that infected his brain attacked his retina just as he appeared to be making a full recovery.
He is still in hospital and we are looking to get him physically and mentally as strong as possible in the hope that he can be moved to a rehabilitation centre as soon as his health allows. Although we are back living at the hospital now that our other son is back at school, we are still using the kitchen at Rainbow House to cook for Josh as he is able to start eating again after being nil by mouth for nearly seven months.
We are still hopeful he will make a full recovery as far as his neurological problems are concerned, although his hearing and the sight in his right eye will not return. We hope and pray that his left eye will not be affected. Life is difficult but we have never lost hope. The Sick Children’s Trust has provided us with somewhere to stay as a family when we needed it most and has given us lasting and happy memories at a time when they have been few and far between.