This is Oliver’s story, who on the 21st March 2024, was diagnosed with Philadelphia Positive T-Cell Acute Lymphoblastic Leukaemia. 6 months on from diagnosis, his father recounts the lead up to his son’s diagnosis and the events that shortly unfolded, as well as the impact on their family’s life and how things are currently.
This is a powerful read that some may find distressing. However, by sharing Oliver’s story, his dad hopes to provide insight to others facing similar challenges and raise awareness of Leukemia, helping parents to recognise the signs and symptoms.
The below is written by William, Oliver’s Dad:
Our little boy…
Oliver has always been an extremely active young boy, your typical lad, nothing could stop him, full of life and energy. If Oliver walks into the room, you know he is there, he makes friends incredibly easily and is at his happiest when he is making other people laugh and smile. He is the boy who every time we go down to the park where we live would run ahead, knocking on all the other children’s doors, slowly building his crowd of friends along the way.
He was level 5 at swimming working towards level 6 with much older children. He loved going on bike rides; two weeks before diagnosis, Oliver rode into town and back with me. One week before, Oliver was playing on the park running around playing football with his friends and his new toy remote control car his Grandad had just bought him.
He was very academically able, one of the top pupils in his class for both reading and maths. He ate healthy, first to demolish the vegetables on the plate before anything else and absolutely loves Broccoli.
The point I’m trying to make here is that Cancer happens to anyone; it doesn’t matter who you are, how active you are, how well you eat, whether you are otherwise well and healthy, it doesn’t matter, it doesn’t pick and choose, it just happens. Raising awareness of childhood cancers is important for parents. You never think it will be something you’d have to go through.
The lead up to Oliver’s diagnosis…
In the weeks leading up to Oliver’s diagnosis there was very little change in Oliver himself, nothing unusual for a 6-year-old to be experiencing and certainly not any symptoms usually associated with Leukaemia.
Oliver had an ear infection about three weeks before he was diagnosed. He was in pain however; ear infections are common and nothing can be done unless it goes on for more than 5 days as per NHS guidelines. 5 days past so we followed NHS guidance and took him to be seen by a pharmacist, who are now able to prescribe antibiotics. During taking the anti-biotics the ear infection shifted from one ear to his other. We contacted the GP to explain this didn’t feel right and they booked us an appointment, but only to see an ANP nurse and not a GP. The nurse looked in his ears and did an ENT referral, unfortunately the nurse did not do any other checks and off we went to wait for the referral.
By the time the ENT referral came through, we were already in Alder Hey receiving chemotherapy treatment.
The Wednesday before Oliver’s diagnosis, his school called us to say he needed to be picked up. He was feeling sick, looked pale, and was extremely tired. Given that there was a sickness bug circulating in his class, both the school and we assumed it was just that.
Later that day he perked up and never was sick, so we sent him into school again on the Thursday as all seemed fine.
Friday morning, he woke up and didn’t feel too good again, so we kept him off school anticipating that maybe he did have the sickness bug and it just hadn’t come out yet.
Saturday morning Oliver started being sick, we assumed this was the sickness bug from school.
Sunday, Oliver woke up with a slight jaundice to his skin, we knew this wasn’t right. We had already taken him to the GP’s and had antibiotics, but they were getting nowhere so we rung 111 who advised us to go to A&E with him.
After 4 hours moving through the A&E process, we finally got admitted onto the children’s ward late on Sunday.
Monday was full of doctors coming in and out, bloods were drawn from Oliver time and time and time over. The doctors explained that he was a mystery, his blood results were slightly out of normal range but nothing that pointed to a particular illness, although his Liver Function Test which was off the scale at 1,600!
Doctors were in talks with Birmingham Hospital who are the paediatric liver specialists in the UK and this was currently their focus.
They asked us to put together a full family history of illnesses and we were having to ask family members if they knew of any hereditary illnesses. They asked if we had been outside of Europe in the last 6 months and told us quite openly he was a mystery but they needed to find out what was causing his liver to be so unhappy and quickly.
Tuesday morning, Mum saw a lump in Oliver’s chest, just near his collar bone. This wasn’t there the day before. Oliver had been checked over by several doctors, and all his lymph nodes were examined. Every single inch of his body had been checked for any signs or symptoms that would help the doctors diagnose what was going on.
Mum told the doctor that morning and as soon as the doctor examined it, he ordered an immediate chest x-ray.
The moment of diagnosis
Oliver’s chest X-Ray was carried out around 2pm on Tuesday 19th March. At 5pm, a doctor came into Oliver’s room with a nurse and play specialist. The Doctor explained to Oliver that the nurse and play specialist were going to spend some time with him while Mummy and Daddy went with her to go and have a little chat.
I remember that moment, that sudden feeling of complete uncertainty, something was about to happen that nothing could stop.
The walk behind the doctor felt long, in reality it was probably about 25 steps, but the whole way there you just didn’t want the walk to end. You didn’t want to be doing this.
We sat down in the room small room – three chairs on one side, another single chair opposite, a small table with a box of tissues on, the doctor sat opposite us.
“As you are aware, Oliver is not too well at the moment, and after Mum found a lump in his chest this morning he was sent for an X-ray. I’ve now had time to look at that X-Ray and I have discussed this with some colleagues, The Chest X-Ray has revealed a large mass in the centre of Oliver’s Chest; I’m really sorry, but we think Oliver has Cancer….”
What? How? Why? What? What? What?
I can not put into words the feeling that flowed through us. It is impossible to explain to someone how hearing those words about your child makes you feel, the unimaginable number of thoughts, the complete genuine numbness that you feel, your ears stop working. You could literally stand up, turn around and look at yourself sat in that room as if you’re not really there. Your whole soul leaves your body for a moment.
We cried and cried and cried…
Alder Hey they had ordered Leighton Hospital to do a CT scan ASAP. Leighton explained that this was not likely to be possible until the following day due to the CT scanner being booked up.
We went back to Oliver’s room to try and digest what had just happened. Trying to hide the fear on our faces from Oliver and to give him the biggest tightest hug you could imagine to make him feel safe and secure and not to worry him, he had no idea what was going on.
Two hours later, we were asked to do the same walk again. We were told that one of Alder Hey’s top consultants, Mr Hayden, had looked at Oliver’s chest X-Ray and his blood results and wanted him in Alder Hey immediately; he had already sent an Ambulance and it would be here within the hour to collect Oliver. 
The following days…
The following days are a bit of a blur. Meeting after meeting to discuss Oliver with various consultants. Nurses administering lots of different drugs, pumps with various fluids being attached to Oliver’s cannulas.
Oliver had the CT scan the following day on Wednesday, exactly a week after being sent home from school feeling poorly from a sickness bug. Seeing your little boy now in a specialist children’s hospital, on an oncology ward, being put in a CT scanner was just too much to take in and process. We found ourselves just going with the flow, trying to keep up.
Later the same day, we were shown the results of the CT scan and that they thought Oliver had Leukaemia. Hearing that they thought he had cancer was bad enough, but now hearing the type of cancer, leukaemia, was just unbelievably terrifying. A blood cancer.
Up until this point we thought the mass in his chest was a tumorous type of cancer. What was the mass then? We were told that they were pretty sure it was a type of Leukaemia called T-Cell Leukaemia, as that is the only type where the thymus gland becomes enlarged with cancerous cells but they would have to do a bone marrow biopsy to confirm the exact type.
Thursday morning Oliver went to theatre. Seeing your child go under general anaesthetic is not nice, we’ve seen it many, many times since and it never gets easier, ever. It upsets us every time.
He went to theatre to have a long line, (a more permanent type of canular inserted into his upper arm), a bone marrow biopsy, a skin sample taken and to have a lumbar puncture to take CNS fluid and to inject some chemotherapy into his spine as a precautionary measure while they made a formal diagnosis.
Later that day, what would become Oliver’s permanent consultant, came to see us. Her name is Kat and she has been absolutely amazing on Oliver’s journey.
She confirmed that it was T-Cell Acute Lymphoblastic Leukaemia, and they would be starting chemotherapy the following day. What followed was a mountainous amount of paperwork; explanations about what leukaemia is, details of Oliver’s treatment plan, the drugs he would be receiving, and countless forms about both Dad’s and Mum’s medical history. We had to go through sheet after sheet outlining the potential side effects of the medications, signing form after form to consent to each drug, operation, and test. We gave permission for DNA checks, whole genome sequencing, and to enroll Oliver in trials…
I remember at one point, I just had to stop and say to Kat, “this is Oliver’s DNA, this is Oliver’s life, these are the side effects that are going to affect him, not us, but we’re sat here going through all this and he has no idea what is going on, we’re literally consenting to him having things done that he isn’t even aware of” – Kat fully understood, they all understand.
Kat came with us to help us tell Oliver about his illness and how we were going to help him.
Treatment begins…
The next few days were tough. Leukaemia is fast; the rate it was progressing at was scary. We were given a Ronald McDonald House room so we could be close to Alder Hey. One of us would always stay in the room with Oliver and we would take it in turns to take a rest or freshen up at the Ronald McDonald House.
Oliver needed both blood and platelet transfusions within the first couple of days of treatment and spent a few days on oxygen. Any parent that has been through this will completely relate to the, ‘alarm anxiety’ you get. The sound of the monitors going off to alert that something isn’t right, to the point you are left hearing it in your thoughts even when you’re not in the room. Constantly staring at those monitors, all day, all night, watching his heart rate, his respiration rate, his oxygen levels.
Whenever it was possible, it was important to try and keep Oliver moving. We would go for walks around the ward as often as possible, however Oliver often felt far too ill, not just because of the cancer but because of the harsh effects of the chemotherapy he was on.
Oliver was inpatient for 2 weeks initially before being sent home with us, something we were so so glad of, to have our family back together, at home. Amongst everything, is our daughter, Lilly who’s 11. We hardly saw Lilly for those first two weeks and friends and family helped to try and keep life for her as normal as possible.
Being able to take Oliver home was such a great feeling but also scary. We were taking our little boy home, two weeks prior a little poorly, now a cancer patient.
Returning home…
Linking Alder Hey, the community nurses, his school, and all the other moving parts together became essential to ensure everyone was informed and coordinated. Suddenly, a massive operation was mobilised, with everyone working together to support Oliver’s care.
Before taking him home we had to have parent education training. We would be administering his drugs at home and we had to be trained on the symptoms to look out for, how to deal with chemo spills, what being neutropenic meant (even the slightest illness could now be lethal to Oliver as he has no immune system), phone numbers to ring, community nurses, key workers, charity social and support workers, physiotherapists, occupational health professionals, direct ward access at our local hospital, 38 degree temperature spikes and the importance of Oliver being back in hospital and receiving antibiotics within just one hour!
Our diary full of appointments, and we were back in Alder Hey every few days. But for now, Oliver was home, in his own bed, and together as a family. Our new life was just beginning, and we hadn’t even had chance to realise what was going on.
Our new normal…
With regular home nurse visits and blood tests, we began adjusting to his medication regime and administering the drugs, dealing with the terrible side effects of chemotherapy, sickness, hair loss, tiredness, trying desperately to keep him eating and drinking and toileting. Due to the side effects of the high-dose steroids combined with the chemotherapy drugs, Oliver completely stopped communicating with us.
We completely re-coordinated our lives around this new normal, trying to keep Lilly involved in her clubs and going to school. Mum couldn’t return to work, Oliver now needed 24/7 care. She become like a nurse herself, caring for Oliver, drawing up medications and administering them. Although now normal, it was very stressful to begin with, making sure you were giving the correct one at the correct time and the correct amount.
The journey..
Two weeks of home life, Oliver took a turn for the worse. we ended up in the High Dependency Unit in our local hospital Leighton and a specialist NWTS Ambulance transfer had to be arranged with a doctor and nurse onboard to take him to Alder Hey.
The diagnosis is one thing but the journey is something people don’t always fully understand, because it’s not always talked about enough.
Oliver was wired up to multiple machines; this journey was just getting worse and worse, with little time to even catch up with where things were. As parents you feel helpless, suddenly flung down a river and told to swim upstream as fast as you can.
Once Oliver arrived at Alder Hey, it was decided he must go straight to Alder Hey’s Critical Care department and a full team of doctors and nurses moved into action.
We don’t fully understand everything they were doing, the drugs they were administering, the tests they were carrying out, you just have to put your faith in them. As a parent you feel desperate, desperate for a solution, desperate for help, desperate for all this to just go away and for you to wind back time by a mere three weeks when none of this existed.
The room Oliver was in at Alder Hey was nothing short of being like something from a sci fi film. This is a side to the NHS you don’t see, the part you shouldn’t need to see, the part no parents ever want to be a part of. Thank God we have the NHS because although we all moan at times about things, when you are in their care and surrounded by the experts and the technology and treatments they have, you realise just how lucky we are to have the NHS.
The pictures I’ve shared show the hidden side of treatment that people don’t see, they are the harsh, harsh reality of what families are going through, what the children are going through.
Oliver himself must have been terrified, not knowing or understanding anything about what was happening to him. At just 6 years old, being thrust into a world that most people will never see or experience in their whole lifetime.
We were told in the early days, (and contrary to what you might think), children are given harsher and more drugs than an adult with cancer would ever receive. Children can just about tolerate it, their organs are young whereas an adults organs are old. The harsh reality of this is that these drugs end up damaging those organs for the rest of their lives, the price to pay for getting rid of the cancer.
Oliver was in hospital for 3 weeks while they stabilised him and tried to figure out what was going on. We were kept updated with at least two doctors’ visits a day. Oliver was on 30 minute observations, then hourly observations, then 4 hourly observations as he slowly started to improve.
Oliver had a feeding tube inserted as he became unable to do anything. He couldn’t even raise his head off the pillow or lift his hands up. Yet Oliver kept fighting, kept on going and we his parents never left his side. Every minute of every day doing everything we possibly could to help him.
Mum would read books to him, we would talk to him, we would play his favourite movies in the background while he slept so he could hear familiar things, we bed bathed him to keep him clean and fresh. He became constipated for 14 days due to the drugs which was another worry that almost led to surgery. He was covered in bruises from where the nurses had been administering medication into his central line. His little body at 6 years old was being put through a huge challenge. He was poorly, quite simply the most poorly he has been throughout all of this.
We eventually moved from High Dependency onto the oncology ward. After a week, Oliver began to wake up more and we were able to help him more, encouraging him to eat ,drink and move.
Oliver slowly started talking to us again, he hadn’t spoke to us much since he was diagnosed. Very few words at first but it was a start. We were so happy. Now we could properly find out how he was doing. Cognitively he seemed to be fine, which was of great relief. We took his PlayStation up to the hospital and he was able to play with his friends and talk online; this helped build the strength back up in his arms and fingers and also helped him to communicate again.
It was clear however, the toll on his body had led to massive amounts of muscle wastage and some of the chemo drugs had impacted his ability to use parts of his body. Oliver could no longer stand and started to receive daily physio for this. Occupational health started ordering lots of equipment to be delivered to our home in preparation for us returning at some point.
We had liquid food delivered to home so we could feed him through his tube and Mum was trained on how to use the NG Tube at home.
Eventually, after 3 weeks, we were allowed to take him home again. 8 weeks into diagnosis and 5 weeks spent as an inpatient.
Those are just the first 8 weeks, 8 weeks where life changed forever. There would forever be a before and after, before the illness and after diagnosis. We needed to learn to adjust to our new normal as soon as possible.
The unspoken…
There’s so much I’ve not even included, there’s just too much to tell! The temperature spikes, the constant worry and fear of infections, the mental breakdowns that Mum, Dad, Lilly and Oliver himself have had. The mental torture of wondering why, how, when, where, could we have prevented it? The constant sickness and nose bleeds, the numerous blood transfusions and platelet transfusions, the sleepless nights or that Oliver spent his birthday in hospital. 
We have always been told that Oliver’s Leukemia is rare and unique, he has a few mutations that are rarely seen and this can make treating it challenging. We were told that Oliver has the Philadelphia chromosome, which is very rarely seen in T-Cell Leukemia and his consultant said she thinks he could be the first ever case at Alder Hey with T-Cell Philadelphia Positive ALL.
Oliver is on the high risk protocol which means more drugs and for extended periods, he also has an additional drug called Imatinib which specifically deals with the Philadelphia chromosome. Oliver has been spoken about on a national level and his consultant has also taken him international, speaking with consultants from other countries.
Life now…
We are 6 months into the journey and the cancer has responded well to the chemo. Oliver now uses a wheelchair, or sometimes a walker, and has physio regularly.
People often ask how many cycles of chemo he has had, or when his next chemo is. With Leukemia it’s constant, there’s no break, he had chemo yesterday, he has chemo today he will have chemo tomorrow, it doesn’t stop, the only thing that changes is the type of chemo and he will receive chemotherapy for a minimum of 25 months! That’s 2 years of his childhood robbed from him with long term side effects for the rest of his life potentially.
For now though, we try to make every day count. We try to make life as normal as possible with Oliver go into school when he can and we have short days out as a family.
The Joshua Tree has been fundamental in trying to get some normality back in life, they were the first proper public place we took Oliver after his diagnosis. We had been told by so many people that we needed to go to the Joshua Tree, even the nurses at both Leighton and Alder Hey said how great it was. Finally, we plucked up the courage to take Oliver and it was the best thing we did.
They just get it. It’s such a safe environment for the children that some of your worries actually melt away while you are there. The staff are great, and the activities they put on for the children are so good. They give the children going through this something to look forward to.
The Joshua Tree is also a fantastic support for siblings. Lilly has really enjoyed her time there and always wants to return. They treat siblings as just as important as the children going through cancer. It’s been nice to see Lilly make friends with other children who are going through something similar with their own brother or sister.
Although Mum has had to put her career on hold, I have continued to work. Fidenti, in Sandbach, have been unbelievably supportive. The love and compassion shown and the flexibility with absolutely everything has been unparalleled. This has enabled me to work but also take time to attend all appointments with Oliver, leave work at very short notice when needed, and the team helping to pick tasks up where needed to help me at work. I cannot put into words just how grateful I really am to Fidenti for their unwavering support. I couldn’t be prouder to work there.
The journey continues…
Recently we were given the news that Oliver’s cancer is no longer detectable in his bone marrow. They are able to test to a sensitivity of 1 in 100,000 cells; that’s the limit of the sensitivity of the test and they could not detect any cancer cells at that level.
This does not mean he is cured; the body has billions of cells in it, but it is very reassuring that we have hit a deep molecular response. The treatment continues now for the minimum 25 month period as the aim is the make sure that not even one cancer cell remains in his body. After all, this journey started with just one faulty cancer cell…
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