Fletcher Discombe

Fletcher was diagnosed with parameningeal head and neck embryonal rhabdomyosarcoma in the nasopharyngeal region on 9th May 2022 with metastases to the lungs and bone marrow. We were due to immigrate to Australia with flights booked for the 17th May. He was finally diagnosed after multiple trips to our GP and local A&E with a large lump on the side of his neck, each time being turned away and told to keep an eye on it. When he began having double vision they performed an MRI test where the tumour was found. We were quickly transferred to Bristol where Fletch underwent a 15 hour surgery to save his eyesight by debulking the tumour. This was successful and he was started on IVADO chemotherapy. He was to have 9 sessions of chemo followed by 28 sessions of radiotherapy. Fletch had a great response to treatment and had clear scans at the 3 month mark. However following completion of his radiotherapy and 7 rounds of chemo, on our way home he had a massive seizure in the back of the car. He was transferred to PICU in Oxford as Bristol had no beds. Following multiple MRI scans, lumber punctures and CTs and more seizures we were told the devastating news that Fletcher’s cancer had returned to his brain and spine and there were no treatment options. We were transferred to Charlton Farm Children’s hospice where Fletch died on the 16th November 2022.

Fletcher's Story...

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 on Fletcher’s 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 Fletcher’s 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 the 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 Fletcher’s 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 intubated 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 intubated 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 intubated 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.

What was your journey with cancer like?

Our journey with cancer was quick and horrifying. You are suddenly thrust into an unknown world of horror and what felt like torture at times. Watching our beautiful boy receiving all the gruelling treatments was brutal but he dealt with it all with strength rarely seen in adults. Each chemo session made him neutropenic and this meant he was back in hospital with a temperature. This was hard for Fletch as he didn’t want to go in unless it was for main treatment. He also needed several blood transfusions to help his counts recover. You suddenly have to learn a lot of information and record of lot of detail to help you understand things. Support varied for us, at the start we had a lot but by the end we had practically nothing. We have always done everything together as a family of 4 and to suddenly be split and having to leave our daughter with relatives and friends was hard. Being away from home and staying in charity accommodation was difficult although we were very grateful for this as we wouldn’t have managed otherwise.

The meetings with the specialists was a feeling I will never forget. Being taken to a side room to be told each terrible bit of information was soul destroying and leaves you feeling completely helpless. We were always confident and positive Fletch would fight this cancer and after such positive scans we thought this was the case. From diagnosis, to him passing away was less than 7 months. It has been a complete whirlwind with the worst possible outcome and our lives will never be the same again.

What changes would you like to see for children diagnosed in the future?

We would like to see a faster diagnosis and more awareness by GPs and paediatric doctors. If Fletch been diagnosed sooner, perhaps it wouldn’t have had the chance to spread and grow so close to his brain. As a parent, you have a gut feeling when something isn’t right and this should be listened too. There needs to be better treatments for rhabdomyosarcoma and more funding for research into treatment and cures. Also, more support for parents financially and mentally. We were lucky we were able to fall back on some savings to get us through, otherwise I don’t know what we would have done. Ultimately, you need to be with your child not worrying about work or paying bills. I also think they need to look at each child individually rather than following a set trial or protocol. I feel if Fletch had a chance to receive more chemo before he started his radiotherapy (certain parts of the chemo couldn’t be given while undergoing chemo) this may have meant a better outcome. There has also been a lack of support following his death.

News

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