The Beginning
On 17th August 2017, Blaize, who was just 3 years old at the time, began complaining of pain and that he couldn’t pass urine. We took him to our local hospital, where doctors attempted to insert a catheter, but were unfortunately unsuccessful. He was then transferred to Alder Hey Children’s Hospital.
After several days of scans and tests, no cause was found, and we were sent home. We were due to return a week later to have the catheter removed and monitor his progress, but we were back much sooner as Blaize was in severe pain. Even after the catheter was removed, he still couldn’t pass urine, so the decision was made to fit a suprapubic catheter, a tube inserted through a small opening in the lower abdomen to drain urine.
More tests and scans followed, but once again no answers were found. Doctors then decided to put him under general anaesthetic to carry out a bladder scope.
The Diagnosis
The urologist came back and said that she had trouble looking properly as his bladder wall was high for some reason, so she sent him for another MRI scan and wanted us to go home until the results were back the following week.
I was reluctant to leave, as I had a gut feeling that something was horribly wrong. We stayed, and the team agreed to have the results rushed through. That’s when our world came crashing down.
The consultant came in and told us that the MRI had revealed a tumour. I asked the question, “Do you think it’s cancerous?” and heard the words “yes.”
I turned to my mum, looked into her eyes, and broke down crying, saying, “I told you!” Then I went to Blaize, who was lying on the bed, kissed and hugged him, and said, “I love you.”
We were told the tumour was the size of a satsuma, measuring around 6cm by 4cm.
The next day we met with our oncologist, who told us he believed the tumour was a soft tissue cancer called Rhabdomyosarcoma. Blaize was only the fourth child at Alder Hey to be diagnosed with this type of cancer. They explained that it was considered rare, but as we’ve since learned, childhood cancer itself is not rare.
Blaize underwent a bone marrow test, biopsies, and had a line fitted. On 11th September, the diagnosis was confirmed: Embryonal Rhabdomyosarcoma, stage 3, located in his bladder and prostate. We were devastated. The reality of it all finally hit, three long weeks after this journey had begun.
Treatment
Blaize was given a treatment plan consisting of nine months of chemotherapy, followed by surgery and radiation. His chemo regimen was IVA, Ifosfamide, Vincristine, and Actinomycin, administered every three weeks over a three-day period.
It was incredibly hard for all of us, life just came to a halt, and suddenly we had to navigate this whole new world. Blaize was nearly 4 when he began treatment, and he couldn’t understand how the medicine meant to make him better was also making him feel so poorly.
He lost his hair, suffered sickness, went back into nappies, and became skin and bone because he couldn’t eat properly. He was constantly in hospital, even on his days off from chemo, due to infections and low blood counts (neutropenia). This meant more days on antibiotics, as well as platelet and blood transfusions.
Through it all, Blaize was resilient. I, however, was a mess, how could my little boy, who was so poorly, take it all in his stride? He should have been starting nursery, not starting a treatment plan for cancer.
Paris or America?
As part of Blaize’s treatment plan, he needed surgery and radiation halfway through. This meant we had to choose between two options: proton beam therapy in America or brachytherapy in Paris. Our consultant explained that previous patients had travelled to Paris and achieved successful outcomes. Although brachytherapy is available in the UK, it’s delivered differently and hadn’t proved as effective. With this in mind, and knowing more about the treatment in Paris, we decided that was the best option for Blaize.
The process was far from straightforward. We spent weeks filling in forms and applying for overseas healthcare, waiting what felt like forever for an answer. Eventually, approval was given for Blaize to receive treatment in France, but it would need to be partly self-funded. This brought a whole new layer of stress, as we didn’t know exactly how much needed to be raised, with figures changing constantly.
On 5th October 2017, we organised a family fun day to help raise funds, alongside a GoFundMe page. The generosity we received from our local community, and even from people who didn’t know us personally, was overwhelming. Donations, fundraisers, and messages of support poured in. 
We will be forever grateful, because without that kindness, we may never have raised the money, and Blaize might not still be here today.
Next came the logistics: arranging treatment dates, accommodation, flights, car hire, and everything else for what was expected to be a month-long stay. However, Blaize wasn’t fit enough to travel or undergo the treatment at that time. So, we made the decision to spend Christmas at home and aim for Paris in January/February 2018.
Paris Treatment
In January, Blaize spent a week having immunotherapy infusions to boost his immune system before travelling. A scan confirmed his tumour was within the size criteria for the combined therapy in Paris, and finally things felt like they were moving in the right direction.
At the end of the month, we flew to Paris, unsure of what to expect and hardly able to process what was happening. After endless paperwork and meetings across two hospitals, Blaize was scheduled at the Kremlin Bicetre hospital for surgery to insert rods in preparation for his brachytherapy the following week.
The day of surgery was awful, we weren’t allowed into the anaesthetic room as we would have been in the UK.
Thankfully, Blaize’s wonderful urologist, Miss H. Corbett, travelled over to be present in theatre, which gave us some reassurance. Her dedication to her patients is truly remarkable.
Blaize then spent a week in intensive care in severe pain, managed by an epidural and ketamine. From that day until the end of treatment three weeks later, he had to lie completely flat on his back so the rods would stay in place and the brachytherapy could go ahead. As you can imagine, that was incredibly difficult for a four-year-old.
Radiation in Paris
A week later, Blaize was transferred by ambulance through heavy snow to another hospital, Gustave Roussy. There, x-rays confirmed the rods were still in place, and he was taken to a small side room with a huge pulsed radiation machine, a tiny TV, a chair, a table, and a lead door. His brachytherapy was ready to begin.
Blaize was connected to the machine and received 143 rounds of radiation over six days. Every 45 minutes we had to leave the room for 15 minutes while the treatment was delivered.
What we hadn’t realised before arriving was that parents weren’t allowed to stay overnight.
We could stay until 10pm and return at 8am, but leaving him each night broke my heart, and his.
The language barrier only added to the difficulty, making an already traumatic time even harder for Blaize.
Returning Home
When his treatment at Gustave Roussy finished, Blaize was transferred back to Kremlin Bicetre for surgery to remove the rods. Afterward, he was returned to the ward with minimal support and was soon discharged. He struggled to walk and was extremely dizzy for several days due to muscle loss from lying flat for so long.
During this time, Blaize’s Nannie returned home after two weeks, and his Grandma flew over with his older brother (aged 7) to surprise him. This period was challenging not just for Blaize and us as parents, but for his siblings too.
We stayed in France for a few more days and even managed a sneaky trip to Disneyland the day before flying home.
Back in the UK, Blaize resumed chemotherapy, completing the final two months of his treatment plan. He finished treatment in April 2018 and had his line removed in June.
Life After Treatment
We went on a few family holidays and days out to try and make up for lost time and to try and find ourselves again and our new normal. It was nice, while it lasted.
It wasn’t long after that Blaize’s behaviour started to spiral out of control.
He was playing up at the hospital, being verbally abusive to staff, refusing scans and tests. He was very antisocial, moody, and angry (still is at times but he has come such a long way). He was verbally and physically abusive and at times a danger to himself.
He was also having bad side effects from his treatment too, which was not helping matters. Then covid hit, he got worse, my mental health and his was at rock bottom.
We tried to seek help, he wouldn’t communicate with psychology, the community paeds team and CAMHS basically said that he didn’t meet ‘criteria’, as it was caused from emotional trauma from the cancer.
He not only went through trauma from the cancer, but he also missed the first few years of school so he didn’t have the social skills that most children had, he didn’t know how to express himself. Plus, he had the added trauma of the Paris trip.
Reaching Out for Support
After the hair grows back, treatment ends and that bell gets rung, people think that’s it. They think it’s all over and life resumes to exactly how it was before, but that’s far from reality.
I finally reached out to The Joshua Tree for the second time in my life, the first being for support for my eldest son while Blaize was having his treatment. He used to have weekly sessions at school with Rachel, which helped him and me massively during that time.
This time was obviously for Blaize because I didn’t know where else to turn, I was at rock bottom. They welcomed us with open arms and provided him with an art therapist and later a psychotherapist. They also offered me therapy on more than one occasion, but I declined.
My mindset at the time was that I didn’t want to seek support for myself until Blaize had all the help he needed. Looking back now, I know I should have accepted it too.
I experienced extreme guilt, guilt for choosing that treatment plan, questioning whether it contributed to his trauma, and blaming myself for the way he behaved. 
Once the Cheshire Support Centre opened post-covid in February 2020, we started visiting often. It’s such an incredible place for the whole family, children on treatment, after treatment, and even in bereavement.
Without them I don’t know how we would have managed. When no one else would help us, they did, and have ever since.
They will try to help in whatever way they can, there’s always a listening ear and without judgement too. The Joshua Tree is incredible, it’s a charity that we are lucky to have, through unlucky circumstances.
Finding Our New Normal
Blaize had a really rough few years after treatment, we all did. I think everything just hits you all at once. You suddenly have time to process things and for emotions to escape. You’re left on your own not knowing where to turn.
The hospital visits become less and less, the family visits start to fade away. I had another baby in 2019, which was hard going too due to covid, lockdowns and dealing with Blaize at his worst.
But he has come a long way. He is now able to manage his emotions a lot better, think before his actions, he is more sociable and understands what he went through.
He was even told by one head teacher that he wouldn’t make it to a mainstream high school. But guess what… he has just started Year 7 at a mainstream high school and he was also 7 years cancer free a few months ago!! 
We are forever grateful and so proud of him.
It’s been a long journey, but Blaize has taught us what true resilience looks like, how to face challenges with courage, patience, and hope. His strength has inspired us every day, showing that even in the toughest times, we can keep moving forward together.
Mum, Leonne
