Written by Dylan’s mum Jess
Dylan Mitchell was born on Sunday the 8th January 2012. As a second born, he was a reasonably easy going baby who loved nothing more than terrorising the dogs and playing with his brother. As he grew, he developed a brilliantly cheeky personality and an often unsatisfiable appetite. He was particularly fond of fromage frais yoghurts and dried cranberries although not together! He was also a huge fan of hummus and I remember one lunch time, I gave him a pot of hummus and carrot sticks before popping out to hang the washing. I came back 5 minutes later to an empty pot and untouched carrot sticks. Dylan had used one stick to spoon feed himself the entire pot!
In early 2014 Dylan became a little more sleepy than usual during the day. At first I put this down to not sleeping well at night. We had just moved house and Dylan was sharing a room with his older brother. I was also heavily pregnant with my third child and so, I reasoned, this could be a factor too.
In February 2014 Dylan became a doting big brother and we started to settle into life as a family of five. However, Dylan became unwell. I took him back and forth to the doctors and a variety of viruses were diagnosed. I wasn’t convinced and so I kept phoning and pushing to be seen again and again and again.
Dylan was completely off his food, being sick everyday and screaming in agony on every morning school run. His balance was also off. The only thing was, he only really displayed these symptoms in the mornings, by the afternoon, he was back to his playful loving self. In early May, after yet another visit to the doctors, they were perplexed. I was at the end of my tether and so we finally agreed that it was time to take Dylan to the accident and emergency department to get some tests carried out.
By the time we got to the hospital, Dylan was symptomless and easily the most healthy child in the Paediatric Assessment Unit. I could see the triage nurse bumping him further and further down the list as the afternoon drew on.
Dylan was happily playing and I was nursing his baby brother who threw up all over me. The triage nurse offered us a cubicle to clean myself up and Dylan’s dad went over and scooped Dylan up without warning. This brought on pretty much every symptom I was concerned about.
Dylan started screaming, vomiting, he came out in a rash and all because his dad had picked him up. By now, the four of us were covered in vomit, still standing in the waiting area. We were quickly ushered to a cubicle and doctors appeared from everywhere. Dylan was inconsolable, clutching his neck and screaming. The doctors were suddenly concerned.
Over the next few hours many painful tests were carried out but they all came back as normal. I had returned home with the baby and collected my eldest from school and Dylan and his dad had remained at the hospital. In the early hours of the morning, Dylan was moved to the children’s ward but we still had no idea what was wrong.
The next day, doctors told us that all the tests had come back as normal and whilst they agreed that Dylan wasn’t well, they were confident that it wasn’t serious. We could take him home. We refused. We insisted that they were missing something and they needed to look harder, fortunately they agreed and the next day Dylan had an MRI scan.
Later that day, we were playing in the outside play area when a consultant came out to see us. She asked us to follow her to a room. I knew these rooms from tv shows . They are windowless and featureless. There are tissues on a table. Nothing good is ever discussed in these rooms. I was absolutely not going in that room with her. I guess I thought that if she could tell me the results in a kids play area, they couldn’t be that bad. I was wrong. So very very wrong!
Dylan had a brain tumour. It was the size of a golf ball. He needed to be transferred immediately to a bigger hospital.
Over the next few days, Dylan had further MRI scans to enable a team of elite brain surgeons to plan their next move. Within a week of us first presenting Dylan at our local hospital, he had had over 10 hours of brain surgery. The team had removed over 99% of his brain tumour but there were three pea sized spots in his spine that couldn’t be removed. Deep down we all knew that it was cancer but we hung onto the fact that, until the histology was back, there was hope. We spent the time helping Dylan with his Physiotherapy and getting him strong enough for what lay ahead.
Sadly, the histology confirmed what we already knew, Dylan had cancer. Medulloblastoma to be exact.
Meetings were held, consultants were consulted and it was decided that Dylan would face grueling treatment. He would start on a recommended chemotherapy treatment protocol in a matter of weeks. All that was left for us to do was to take him home and help him recover from surgery to enable him to be strong enough to tolerate the chemotherapy.
The night before he was due to start chemo, we received a phone call from the consultant to say that the chemotherapy treatment protocol had been withdrawn following a patients adverse, and sadly terminal reaction. We had to wait whilst more people were consulted and a new treatment protocol was cobbled together.
After what felt like a lifetime, Dylan was called in to receive his chemotherapy. It was hard on him and he was an inpatient for one week out of every two. The family was fractured. I was at home with my eldest and youngest and Dylan’s dad stayed at the hospital with Dylan. It was tough on all of us but it was especially tough on Dylan.
Nevertheless, we pulled together and Dylan received 6 months of chemotherapy receiving his last dose on christmas eve. What an amazing Christmas present, the gift of life!
As a family, we left that hospital full of hope and dreams for the future. Sadly, it wasn’t meant to be. In January an end of treatment MRI scan showed an area of concern in Dylans brain. Doctors couldn’t tell what it was so it was and as Dylan was well, it was decided that we should rescan in a month and see if it was any clearer. Within a matter of weeks, I, at least, had an answer. Dylan was displaying symptoms again and my mothers instinct kicked in. Dylan had relapsed, I just knew it. We had to wait another two weeks before the mri scan confirmed it. Dylan had relapsed, spectacularly. My little boy now had cancer covering most of his brain and spine. The doctors were grim. He had roughly three weeks to live unless he had extremely high doses of radiotherapy yet, due to his tender age of just three, the life saving radiotherapy would cause life changing and life limiting side effects. What choice did we have? Dylan was fading and fast. He was rapidly losing the ability to use his lower limbs, he was getting noticeably weaker and he was being kept alive by steroids. We tried and failed to harvest his stem cells, nothing we did was working. We signed the forms almost immediately despite it taking the best part of a day to list all the side effects.
The only hurdle was, where to have the radiotherapy. Radiotherapy is given in blocks of six weeks. It is carefully planned out and delivered every five days, Monday to friday. Children also have to be under a general anesthetic to keep them still. Our ‘local’ radiotherapy centre was fully committed. So were our neighbouring centres, so were their neighbouring centres. Dylan was too ill to fly and travel any great distance so overseas centres were ruled out. The situation was getting desperate when a space for photon radiotherapy opened up.
It was too late to save Dylan’s lower body, which was irreparably damaged by a spinal cord injury caused by tumour compression, but it wasn’t too late to save his life. Dylan was practically paralysed at the start of the six weeks and practically skipping by the end.
Despite all the odds. Dylan had fought back from the brink.
Now the next step, more chemotherapy. We had two options, the doctors couldn’t decide so it was up to us. Option one was shorter but required a lot of inpatient stays and several painful stem cell harvests, option two was longer but meant that Dylan was only in hospital for a few days every cycle and no painful stem cell harvest was needed.
We chose option two and Dylan cracked on. In amongst chemotherapy he visited play groups, hung out with friends and popped in and out of his nursery. This continued for a year and Dylan went from strength to strength. He finished the protocol in May and things were looking up.
Sadly, my marriage didn’t survive and so the boys and I stumbled around for a while whilst we found our new normal. Dylan was off treatment but had many, many disabilities that we needed to adjust to and learn to manage. These included hormone deficiencies, bladder and bowel dysfunctions, hearing and sight impairments and severe learning difficulties. These were managed with daily injections, medicines, exercises and procedures. I was also preparing for Dylan for the start of school and helping them all adjust to life as a newly split family.
We thrived. Dylan thrived. He loved school, he made some lifelong friends and he seamlessly adapted to and overcame all his disabilities. We felt unstoppable. We were doing this. We were picking up the pieces and we were living life to the full. We were always on the go, making memories, travelling the world and having fun.
Then, a routine surveillance scan in 2018 pulled the rug from underneath us. I went for the results as usual, on my own with the kids. We had a picnic in the play area over the road from the hospital and then went in for the results.
I knew almost immediately that the results weren’t good. On my way to the hospital a hearse had pulled in front of me carrying a coffin and flowers saying ‘son’ so I was already subconsciously aware of something. In the waiting room I could hear two play specialists talking. One asked the other to join her for lunch. She replied that she couldn’t as one of the doctors had her on standby to distract some children. There were loads of clinics going on and loads of children in day care but somehow, I just knew that mine were the children she needed to distract.
I called my mum who tried to calm me down. In fact, I was still on the phone when the doctor called us. I took one look at his face and I ended the call. My mum could wait, the doctor had bad news and I needed my head in the game. The scans had picked up a relapse. The play specialist appeared with an array of toys, the kids were distracted. The doctor and I got on with it. The long and short of it wasn’t pretty. We were out of options. The NHS could only offer Dylan palliative care. This consisted of oral chemotherapy which I would administer at home whilst waiting for his life to play out.
Stunned, I gathered up the kids and made my way to the car. I put the kids safely inside with a screen. I called Dylan’s dad, my mum, my best friend then, I pulled myself together and drove home.
The next few months were a blur. I frantically sent Dylan’s scans around the world seeking
second and third opinions. I scoured the internet looking for miracle cures. I contacted doctors, nurses, researchers, parents, charities, Pharmaceutical companies, anyone who i thought could help.
I bombarded Dylan’s doctor and his dad with my findings and begged them to look into the options . Surely at least one was worth trying even if I had to fund it privately. I would beg, borrow and steal if I had to. The oral chemotherapy was making Dylan miserable. He was needing almost weekly blood and platelet transfusions. He was tired all of the time. Dylan was dying. I even took him on a wish trip to lapland which was rushed through as his doctors thought that this would be his last Christmas. We couldn’t go on like this.
Fortunately Dylan’s doctor, dad and I all agreed to a trial treatment protocol. I would have to fund it privately by crowdfunding and drive him in and out of central London for treatment and Dylan would have to have a port inserted into his brain but the trial was promising. It didn’t appear to offer a long term cure but it did offer years of good quality life whilst waiting for a cure.
It was our last hope. We were taking it.
As with everything, Dylan embraced the new treatment protocol without complaint. I was
apprehensive as Dylan had to sit still whilst chemotherapy drugs were injected into the port in his head. I need not have worried though as Dylan barely even acknowledged that it was happening. He took to the treatment so well and he went from strength to strength.
In fact, Dylan was tolerating the treatment so well that his NHS oncologist started to push the trust to offer part of the treatment themselves. It worked and seven months after Dylan started the treatment protocol, he was asked to help facilitate part of its delivery at our children’s hospital. This entailed allowing the doctors to be trained up on the procedure by administering it to him. The theory is one thing but in practice it can be very different. Dylan was not fazed in the slightest and was a model patient to say the least. In fact, many of the doctors involved told me how much easier the experience had been because Dylan had been so amazing.
Four months later lock down hit and Dylans private treatment was completely withdrawn. Our NHS trust were still not able to administer this element and so Dylan found himself on a concoction of oral drugs to compensate. Again, he didn’t complain.
Lockdown was hard, Dylan missed his friends but we relished the time at home together. If anything, it brought us even closer together.
In September, Dylan returned to school and things were slowly returning to normal. Something wasn’t right though, Dylan was not 100 percent but I couldn’t put my finger on why. His routine surveillance scan was carried out and the doctor called one Friday with excellent news, Dylan’s tumour had shrunk from 11mm to just 2mm and the disease in his spine was stable. I tried to focus on that and put my niggling doubts behind me but Dylan was still not right. In fact, that Sunday he actually asked me to take him to the hospital. By the time I’d got hold of his dad to baby sit, he’d taken himself off to sleep and so we decided to see how he was in the morning.
Monday morning arrived and Dylan said he wanted to go into school to see his friends. I agreed but called the hospital to arrange to take him in later that morning. By around 0930 school had called to say that he needed to come home and so I collected him and took him to our local hospital.
No one knew it at the time but that morning would be the last time Dylan saw his friends, the last time he would wake up in my bed, the last time he would ride in my car, the last time he would leave our house and the last time he would be admitted to hospital.
On arrival we realised that Dylan’s veins had collapsed which meant that our local hospital struggled to gain access. It was obvious from his appearance that he needed a blood transfusion but without access a blood sample could not be taken and a transfusion could not be delivered. The doctors tried many more times utilising all available equipment before they gave in and arranged to try again in the morning. He was given fluids through an NG tube.
Tuesday morning arrived and still the doctors could not gain access. Dylan was, as usual, taking everything in his stride, waving at his favourite nurses, watching his beloved tablet which, despite being an android, he lovingly called his ipad when he suddenly became unresponsive.
At first I assumed that he had nodded off so I gently shook him but he didn’t respond. I shook him more vigorously and still had no response so I called his nurse. From this point on, everything changed.
Thankfully his nurse immediately called the doctors who diagnosed sepsis. Dylan was rushed to theatre and a femoral line was put in. He was then given high doses of antibiotics, fluids and blood. Blood tests showed that Dylan had a cold virus, e coli and sepsis and a CRP (infection marker) of 320. It took a few days to stabilise Dylan but as soon as he was stable he was transferred by ambulance to our childrens hospital. On arrival there it was determined that Dylan had hydrocephalus and pulmonary emphysema, or fluid on his brain and lungs. He had fluid drained from his brain via his port and was transferred to the pediatric intensive care unit (PICU) where he was given high pressurised, humidified oxygen (air vo) in an attempt to dry his lungs out.
By this time Dylan was weak and so a decision was made to put him on TPN which is, in essence, a pharmaceutically derived form of nutrition. This perked him up a bit and he was soon out of PICU and back on the ward. He was still oxygen dependent and weak but he worked with his Physio team daily to become stronger.
In week three of this admission, Dylan vomited whilst lying down and potentially aspirated some of it. His lungs were not working well, he was fighting infection after infection and he was exhausted.
By the early hours of Monday morning of week four, the staff on the ward could no longer maintain Dylan’s oxygen saturation level and an emergency call was put into PICU. Not long after the retrieval team arrived, Dylan went into respiratory arrest. The team battled to stabilise him and we were rushed down to PICU with a nurse ‘bagging’ him all the way.
Dylan perked up again but he wasn’t able to maintain his oxygen saturations even with the extra equipment available in PICU. The team decided to ventilate him. After a frantic video call with his dad and a video message to his brothers, Dylan was put into an induced coma and on a ventilator.
A few hours later, the alarms went off and, despite being on a ventilator, Dylan went into
respiratory arrest. Both lungs collapsed and the ventilator was forcing air into his stomach. He was literally inflating like a balloon right in front of me.
The team fought for hours to stabilise him and he was put on an oscillated ventilator and a nitrogen oxide box. They also pulled well over litres of air from his stomach. I was taken to one side and told to make ‘the’ call to family and friends and tell them that he wasn’t going to pull through. Fortunately, they managed to stabilise him, but not for long.
The next day, Dylan had deteriorated further. Tests showed that he had fungal pneumonia which was causing his lungs to stick together like a swimming cap. The doctors told me that they were giving Dylan everything available. He was on 96% oxygen and 4% nitrogen oxide and nothing was working. They were not able to maintain his oxygen saturations. They couldn’t help any more, it was up to Dylan. He had to fight back. Dylan was exhausted, they didn’t think he could do it and so they told me that he wouldn’t survive the night.
I told them they were wrong, I screamed and shouted that he had fought back from the brink before and he would do it again, that he was a fighter and that I would not let them give up on him. They smiled sympathetically and reiterated that he wouldn’t survive the night.
I sat by his bed all night, holding his hand and willing him to fight and, as usual, he didn’t disappoint. He stabilised himself and so, very slowly, the team began weaning him off the ventilator and the nitrogen oxide. The antifungal medication appeared to be working and his lungs started to clear. It wasn’t all good news though as the air was still escaping from Dylan’s lungs. It was being managed by various tubes which were attached to the suction units but this wasn’t a long term solution. His team were baffled and so Dylan became the first child in the hospital to utilise some new MRI scanner compatible equipment and he was wheeled off to theatre for countless tests and examinations.
One of the examinations was performed by an Ear, Nose and throat surgeon. She used a scope to check Dylan’s trachea. During her examination she found a hole or a connection that should not have been there. It looked like there was an unnatural connection between Dylan’s sterile trachea and his non sterile esophagus. His team felt that this was the cause of his repeated chest infections.
Two days later, Dylan was off the ventilator and a few days later he was back on the ward. Just four hours after we arrived on the ward, Dylan was being rushed back down to PICU. he could not maintain his oxygen saturation levels and so he had yet more tests. These showed that on top of everything else, Dylan now had pseudomonas. Dylan’s drugs were tweaked and he appeared to perk up again when, out of nowhere, Dylan went into respiratory arrest again. The team managed to stabilise him with the help of Airvo.
For over a week Dylan remained stable and even got stronger. His oxygen requirement was down to just 2 litres and it was delivered via a nasal cannula as opposed to a mask. Dylan was engaging well with me, his physio team and his hospital school teacher. We moved back to the ward.
We had been on the ward for a few days when Dylan went into respiratory arrest again. The ward wasn’t taking any chances and a 2222 crash call was made. This mobilises a complete team of elite professionals consisting of anaesthetists, intensivists, pediatricians and even a porter for emergency transport. Literally, from out of nowhere around 15 people gloved, gowned and ready for anything appeared. Dylan was stabilised and again rushed to PICU were he was immediately put into a coma and on a ventilator. I was dragged away from him kicking and screaming whilst the team fought to save his life. Once again, I was told that he was unlikely to survive.
More tests were carried out and Dylan was diagnosed with bacterial pneumonia. More
medication tweaks and Dylan was stable again. It was decided to keep him ventilated but to bring him out of his coma. This seemed to be the best option and Dylan was soon walking slowly around PICU whilst his physio team held his intubation tube in place.
Dylan was going from strength to strength and so he was taken off the ventilator and a decision was made to operate to close this connection in his trachea as soon as theatre space could be arranged for the following week. Dylan was in fine form, he was walking around, playing football and doing crafts with me. But the day before the operation something was wrong, Dylan just didn’t look right. My mothers intuition kicked in and I called his team over.
The decision was made to ventilate Dylan in order for his body to rest and get used to the
ventilator prior to the operation. He was safely intubated and put on the ventilator but then it all went wrong. Dylan’s blood pressure plummeted to around 41/20 with a mean of 28. His heart rate went through the roof to compensate and he was moments away from going into cardiac arrest. His veins collapsed and we lost all access. His team needed to medicate him to stabilise him but with no access there was no way of getting the medicine into him. His body started to completely shut down and his temperature dropped. Dylan had no colour to him, his nail beds were grey and he was freezing. All very clear signs that there was no blood circulating around his system.
Cardiologists arrived and scans showed that Dylan’s heart was empty. It was beating at over 200 beats per minute but all that work was for nothing as there was no blood in it to move. I watched from the side lines as the doctors banded around phrases like septic shower and adrenal crisis and the nurses brought in crash carts.
It took a team of six doctors and ten nurses five hours to stabilise Dylan but, finally he was classed as ‘tentatively stable’. Needless to say his operation was cancelled and more tests were carried out. The tests revealed that Dylan had a CRP of 697, the highest ever seen by the team in PICU AND the infectious diseases team.
Dylan’s medication was tweaked again and again, he improved. In fact, he went from strength to strength. His brothers were finally allowed to come and see him, only for half an hour and from a distance but it really spurred Dylan on. He spent their visit kicking a ball at his paw patrol skittles and demonstrating his physio exercises.
The decision was made to keep Dylan ventilated whilst he worked on his strength and that the operation would be rescheduled for as soon as he was well enough. He was doing brilliantly and even found the time for a video call with father christmas and to open a christmas present. He was ready for surgery.
The morning of the surgery came around and Dylan had a video call with his dad and his brothers. He also watched a video that his classmates had made for him. He was engaging despite being ventilated and happily waving at the screen. I went with him to the theatre and I held his hand and kissed and cuddled him as he went under and told him I would be there when he woke up. I then went back to his room to put up Christmas lights and decorations to cheer him up when he returned.
The operation was only supposed to last a few hours but I waited and waited. Then the surgical team called and explained that they had encountered a problem and could I authorise another procedure. Of course, I consented and went back to waiting and waiting and waiting.
By this time, Dylans dad had arrived and so we paced the corridors together. After around nine hours, the theatre team called and said that Dylan was in recovery and would be back in PICU shortly. Around an hour later and he still wasn’t back but then the surgeon arrived. She wanted to talk.
Being a seasoned oncology mum, I knew nothing good was ever said during these types of talks so I steeled myself but nothing would or could prepare me for what was said. Dylan was dying.
My beautiful, brave, loving boy, who had gone into the operating theatre awake and alert albeit ventilated, was now in a coma he would never wake up from.
I didn’t understand. I couldn’t understand. I wasn’t ready to. I walked out.
The next day the team tried again and bit by bit they drip fed me the information I needed to come to terms with what was happening.
Dylan was dying. He was being kept alive by machines. Something hideous had invaded his lungs, trachea, esophagus and chest wall. His lungs had countless holes in and his tissue was breaking apart. It couldn’t be repaired and the holes couldn’t be patched.
The following day, Dylan’s brothers came in to see him. They talked to him, had hand casts taken with him and lovingly held his hand.
The day after, Dylan was transferred back to the oncology ward he knew so well. The nurses had lovingly decorated a side room with Christmas lights, decorations and pictures. The team removed his lines, drips and tubes and I lay down in the bed next to him. I stroked his hair, sang him his song and told how much I loved him and how proud I was of him.
On Sunday 13th December at 1824, Dylan Gwyn Mitchell’s life on this earth ended.
Dylan was a happy loving and caring child despite everything that was thrown at him. He faced all his treatment head on and often with a smile. He embraced his disabilities and ploughed on regardless. He didn’t let anything get in his way.
When he passed at just 8 years old, covid restrictions meant that we were unable to give him the send off he deserved. I wasn’t able to shout from the rooftops about how special my son was, how hard he fought, how he taught me and all who knew him how to be better people. I wasn’t able to share that the treatment we fought so hard to get was now being given as standard. I wasn’t able to tell people that he was fighting back and he was winning.
But much more importantly, family and friends were not able to honour and remember Dylan in the usual way. Instead, we will honour and remember him for eternity alongside Emmett’s Genies.
Dylan was, and continues to be, so much more than his diagnosis. He is not just another statistic, he’s my son, my middle born, my hero and he’s left behind a huge legacy.