January 2017We had a couple of appointments at the during the month, but I'm not sure whether they were both for me, although I suspect one of them included a check up for Rhys.
On the 18th we were at the Bristol Royal Infirmary. This would have been an appointment for Rhys but whether as a follow up for previous surgery or preparation for his upcoming lung operation I can't remember. It was an appointment where we noticed some moles on his body that we hadn't seen before.
On the 26th we went to see Chitty Chitty Bang Bang at the Hippodrome.
February 2017The start of the month was spent in Bristol. Tracey and I stayed at CLIC House and travelled to and from Southmead hospital where Rhys was recuperating from the operation to remove a wedge of lung and the tumour that had been spotted growing there during a chcek-up at the end of 2016.
Towards the end of the month we saw a dermatolgist at Yeovil Hospital so that they could check out the moles on Rhys' body. The decision was made not to do anything with them but to keep and eye on them and if they changed appearance to act then.
March 2017For a couple of years Rhys had been under the care of a Neurofibromatosis consultant in Plymouth. An appointment had come through for a check-up. While we were there it was suggested that Rhys might want to be referred to a hospital in London where they could keep him abreast of anything that might be of use to him. By the time Rhys got an appointment in the post, there was no longer any point to going.
At the end of March were once again in Bristol, this time at the Dental Hospital so that they could do a biopsy on the lump that was clearly developing inside his mouth. This proved to be one of those light-hearted times because, after carefully managing to excise a piece of the tumour, the dentist managed to get it to close to the suction tube and with a "phew" noise, the tissue was sucked away.
April 2017April saw my 50th birthday. To celebrate Tracey, Rhys and I went to Bristol for the day and visited the SS Great Britain before going to TGI Friday's for a meal.
While we were on the SS Great Britain I received a phone call from the Dental Hospital asking us to go back in the following day for a second biopsy, because there hadn't been enough of a sample following the first ne.
About 2 weeks later we were at Bristol Oncology hospital talking to one of the consultants about the test results. It was confirmed that it was a tumour and the proposed treatment was outlined. Radiotherapy followed by surgery to remove the tumour and then facial reconstruction surgery to replace the part of the jaw bone that would have to be removed.
Before we left I had a private word with the consultant and it was at this point I learned that if the treatment didn't work there was nothing else they could do. If the treatment failed then Rhys had no more than two years left.
We did have some good news that day. After so long trying to get Rhys to put weight on, and it really was a hard task with high calorie diets, the use of nasal gastric feeding tubes and high calorie milk based drinks, he had finally reached a weight of 6 stone 13lbs. The most he'd weighed in a long, long time.
One week later we were in Taunton where Rhys underwent a PET scan so that everybody knew exactly what we were dealing with.
May 2017On the 4th we travelled up to Bristol for some appointments, incuding one at the Eye Hospital for Tracey.=. Arrving early we went to Sam's House, a place run by CLIC Sargent, where we'd stayed many times in the past and where Tracey and Rhys would be staying for the duration of his radiotherapy.
While talking to Sharon, the manager at Sam's, Rhys began to get a glazed look about him and wouldn't respond when we talked to him. After a couple of minutes he was OK. With plenty of time before his appointment at the hospital we decided to go and get him checked out. By the time we saw one of the nurses from the Oncology team, Rhys had experienced at least a further two of these episodes.
We soon found ourselves on the Acute Oncology ward.
Tracey had an appointment at the Eye Hospital and so while she went there Rhys and I stayed on the Acute ward. By the time the doctors were able to prescribe Rhys some medication, he had suffered from between 10 and 12 further self-terminating fits. That evening I left Rhys and Tracey in Bristol and went home. The following day he was scheduled to have a scane to see if they could figure out what was causing the scans. They did and the following day I drove back to Bristol where we were told that they had found two, very small tumours on his brain. There was nothing that could be done for these tumours and so his care from this point on would be palliative. There was no point to putting him through major surgery for the tumour in his mouth and the recuperation he would have to go through afterwards. Quality of life was the important thing now, not quantity.
Radiotherapy would still happen but only two weeks of it, not the full 6 weeks that had been planned.
Rhys didn't understand what the consultant was telling us, Tracey and I both understood that we would only have our baby boy for a little while longer. Rather than watching him grow up and have a life, we would be celebrating his life through his funeral.
June 2017While Rhys was having his radiotherapy in Bristol we had decided that he needed to know that his cancer was terminal and that he only had a while left to live. We had that conversation in the presence of three nurses that Rhys knew, two of whom he'd known for many years.
Rhys took the news exceptionally well, something he was very good at doing.
As the days passed it became clear that we would have to make arrangements for a funeral and that while it was still possible for him to do it, Rhys needed to make decisions about what he wanted.
Having gone through the funerals for both my parents in the previous years, Dad's being at the end of 2016, I knew how important it was to know somebody's wishes. So with that in mind Tracey, Rhys and I made an appointment at Wakely's in Yeovil and on the 20th were sat in a room while Matt, the funeral director talked with Rhys about his interests and the sort of things he liked. As a result of the conversation we had ideas about what the theme for his funeral would be and what his coffin my look like.
The weekend after this meeting we were in the Cotswolds so that Rhys could see one of his Great Uncles and Aunties and one of their sons.
From the moment that we knew Rhys was terminally ill there was a determination to make the most of every moment we had, to make as many memories as we could. Trips were planned and done. We went to London for a weekend and saw School of Rock. We visited Buckingham Palace, went on the London Eye, wandered around the Sea Life Museum. Everything we could do to make the weekend as full and memorable as possible.
Friends organised a concert at church which raised funds to help us fulfill whatever Rhys wanted to do. Another friend set up a fund raising page. Everybody tried to help, in whatever way they could, but Rhys was getting worse and we weren't sure how long we'd have him for. Would he be alive long enough, and would he be well enough to go to the British Grand Prix in July.
It was a tense time for everyone.