Fletch's Family visited the Lodge from the 6th February.
"Fletch was a beautiful boy and a lover of life. Tony and I made the decision during lockdown to immigrate to Australia. We sold our house and gave away most of our belongings, everything else was packed ready to be shipped. About a month before we were due to fly we noticed a lump in fletchers neck. He had also been having some cold symptoms and couldn’t seem to clear his nose. He was otherwise fine in himself. We took him to our local GP who dismissed the lump as a swollen lymph node and said to keep an eye on it.
We weren’t happy with this explanation. Fletch was unable to breathe through his nose and couldn’t smell anything. I took him to the GP again and we also spent 6 hours in A&E on another occasion as I was concerned it was more than just a swollen lymph node.
By this time it was getting much larger and was solid. He was seen by two paediatric doctors in A&E who both said they felt it was a swollen lymph node, it didn’t need antibiotics and to see how it goes.
We eventually persuaded them to give him an ultrasound. We were told this was inconclusive and again to keep an eye on it. We took fletch out to our local park where he told me he could see double. At this point I got cross with the doctors and insisted on him being seen in the hospital. After lots of waiting around he was eventually sent for an MRI. Blood tests were all reassuring.
Most of the day passed waiting for the results of the MRI, each time I asked what was happening they told me it hadn’t been discussed yet. The longer the time went on, the more I knew something was wrong. I was then taken into a separate room to be told they had found a large tumour in fletchers head taking up all of the area behind his nose. We were absolutely terrified but I was told at the time it could be treated so we had hope.
We were transferred to Bristol Children’s hospital from our home in Devon. This meant splitting our close family unit. Fletcher and his sister were best friends and he adored her so being apart was hard. Fletch underwent more MRI scans, CT scans, lumber punctures and bone marrow aspirates. We went to Cardiff for a PET scan. The results revealed the tumour was pressing on his optic nerves which was causing him to lose vision in his right eye. He could only see movement of light.
We were given a horrifying list of possible outcomes and side effects that may happen from surgery to save his eyesight. This meeting took place around 11.30pm on a Sunday night. Given the type of tumour and its location we were told it was not possible to remove it. The surgeons were back in first thing on Monday morning ready to take him to theatre. We were told it could be anywhere from 8 or 18 hours. Fletch was in surgery for 15 hours but we were hugely relieved when they said it had gone well with none of the horrifying side effects that could have happened.
Fletch was in high dependency while he recovered from this and amazingly regained his sight in the right eye. He had surgery to fit a double hickman line ready for his chemotherapy. On the 9th May we were taken to a side room to be told it was Rhabdomyosarcoma and they had also found tumours on his lungs. They were yet to get the bone marrow results but we were told it was highly unlikely it would be there. However over the next few weeks we learnt it was indeed in his bone marrow and this made him very high risk with around 20% chance of survival. Despite this devastating news we remained positive that fletch could fight it. He commenced the gruelling chemotherapy which made him very sick. However we soon got into a new routine and he was able to have chemotherapy in our local hospital in Exeter. We had to move in with parents as we had sold our house and try to rebuild our lives while dealing with cancer. Fletch had scans after 3 months of treatment. We were told that the PET scan showed no evidence of disease and the tumour had almost completely gone in his head. His bone marrow was also clear. This was the best news we could have hoped for. Fletch was due to start radiotherapy in September and so had to have a PEG fitted in his tummy in case he was unable to eat. He struggled with this as he had to turn the PEG and this caused him a great deal of discomfort. He was unable to enjoy the foods he once did as the chemo changed his taste. We had to go back to Bristol for a mask to be fitted over fletchers head and neck in preparation for radiotherapy. This was a brutal treatment and awful to watch him go through, however like everything else fletch just dealt with it without complaint and laid on the table without an anaesthetic every day for 6 weeks to have the radiotherapy. During this time we again had to part as a family with Tony and I taking turns to spend the week in Bristol with fletch whilst the other one stayed home to look after Erin. Towards the end of this he suffered badly with mucositis and was unable to eat food, something which he previously loved to do! He lost a lot of weight and had difficulty swallowing and talking. We returned home after his last session of radiotherapy but had to go back to our local hospital as he was very weak and kept being sick. He spent a week in hospital receiving TPN for nutrition and they also put him on fentanyl for pain relief. At the end of the week he finally seemed to be getting better and the symptoms were beginning to ease. We were driving home when fletch said he was hungry and I was so happy to hear this. However immediately after saying that he had a sudden and massive seizure in the back of the car. We thought we had lost him. I called an ambulance but was told they were all busy. I drove him quickly to A&E at another hospital where he was incubated and put in ICU. This hospital didn’t have a paediatric ICU so they were trying to get us back to Bristol asap.
After a night in ICU we were told Bristol didn’t have enough beds which was upsetting to hear as we felt this is where he needed to be. An MRI was carried out and we were told it was possibly radiotherapy side effects or meningitis. Eventually we were transferred to Oxford as this was the only place available. Ironically it was the hospital I was born in and at least it meant we had some family close by to look after Erin. Fletch was able to breathe on his own and seemed to respond well to us. The room we were in had no windows and was dark and noisy. Multiple times we requested to be moved to Bristol and the doctors at Oxford kept requesting a transfer but Bristol still continued to refuse as there were apparently no beds. I will forever feel let down by this. He should have been in the hospital that knew him and had carried out his original scans.
Fletch seemed well so we took him for a walk in his wheelchair around the hospital. It was then he had another seizure and we rushed him back to PICU. Fletch was incubated again. He underwent multiple lumber punctures, a CT and MRI. He had another seizure on a Sunday night when there didn’t seem to be any appropriate consultants around. He was left for hours while having this seizure while we had to helplessly watch him. Despite a nurse in the room with us all the time, it wasn’t until I got angry and said he needed help that they finally incubated him again. Unfortunately due to the fact he had had such a long seizure he lost the ability to talk to us.
After days and hours of waiting we were told the MRI scan showed evidence of cancer on his brain and spine which was causing the seizures. We were then taken to a side room and told there was nothing that could be done for Fletch and they would try to move him to a hospice. We went to Charlton Farms Children Hospice where they had prepared a beautiful room for him with a spiderman bed cover he would have loved.
Despite the doctors thinking fletch had a matter of days, he fought for a further 2 weeks and passed away on the 16th November just before 4am with me and Tony at his side. Fletch was a fighter, he never complained throughout treatment. The only times he really got upset was when he was neutropenic from the chemotherapy which caused a high temperature. This meant trips back to the hospital for a minimum of 48 hours of antibiotics. Fletch was an absolute lover of life, he was the kindest, bravest boy who adored his sister and would often want to buy her flowers. Losing him has broken us all."