“I think he touched the hearts of many people on the wards” - Remembering Max
30 Mar 2023, 9:14 a.m.
“The heart-breaking truth of it: not every child with cancer will make it.”
In August 2019, 11-month-old Max sadly passed away from a rare childhood cancer. He’d spent most of his life at GOSH.
His mum, Suzie, continues to fundraise for GOSH Charity and other organisations in her son’s memory.
She’s running the TCS London Marathon in April, raising money to help build the new Children’s Cancer Centre at GOSH.
Here, she tells us about Max and his time at GOSH.
Max was born in August 2018. “We were over the moon; he was absolutely perfect in every single way,” Suzie says. “We were so happy to watch our baby boy grow into such a handsome little character, always full of smiles and laughter.”
When Max was around six months old, Suzie became concerned about his health.
“We noticed a change in his breathing, so we thought it best to get it checked right away at our local A&E. They did an X-ray, and the doctor informed us that Max had a severe case of pneumonia and that he would need to stay on the ward whilst he had a course of antibiotics.”
Unfortunately, Max deteriorated quickly from there – prompting more tests.
“He was now so poorly, he wasn’t feeding, he could barely breathe, and he began to pass out from lack of oxygen and pure exhaustion from working so hard,” Suzie says.
“After an emergency X-ray, as we suspected, this was not pneumonia, nor was it any kind of infection, it was in fact a build-up of fluid already collapsing his left lung and spreading rapidly over the right. It needed to be drained urgently, or he was going to die.”
A squad car immediately escorted Max to their local hospital for surgery.
“The consultant looked me in the eye and told us to prepare to say our goodbyes as the procedure was extremely risky,” Suzie explains. “The fluid had now moved to Max’s heart, so they could not be certain that the drain would be inserted into the correct place.”
Luckily, the two-hour procedure went well. The following day, Max had a CT scan – to “check for the cause” of the fluid build-up.
“Max had a large tumour growing rapidly in his chest and needed to be transferred to GOSH where they would give us a diagnosis,” Suzie says. “We left right away.”
“The world was upon our shoulders”
When Suzie first arrived at GOSH, she felt “quite relieved”.
“If we were going to be treated anywhere, this is where we wanted to be,” she says.
Upon arriving at the hospital, Max went straight to intensive care and underwent multiple tests.
It was two weeks later that he finally had a diagnosis.
“We were called into the parents meeting room, the world was upon our shoulders,” Suzie says. “Max had been diagnosed with a Malignant Rhabdoid Tumour, a highly malignant childhood cancer. The prognosis was not good.
“There was never anyone who told us that they wouldn’t try. It was really reassuring to have the faith and belief of the doctors and nurses at GOSH. They believed that we had a chance, albeit only a small one, but we knew they would never give up.”
Max’s treatment started straight away. He had a double-lumen Hickman line inserted into his side to have intensive chemotherapy administered every two weeks.
“This killed off every cell in his body, which meant he had to take a cocktail of medications to counteract the side effects caused by the chemo. My previous worries of giving too much Calpol now seemed ridiculous,” Suzie tells us.
“Max was so poorly, he struggled to make it out of ITU, which meant we had to leave him every night to stay in the hospital accommodation,” she adds.
“We are so grateful [for the accommodation] because we don’t live locally, so it would have taken us about an hour and a half to travel into the hospital each day. So to be able to just walk around the corner was just amazing.
“It’s never nice having to leave your child, but we knew that when he was in ITU, he was under 24-hour one-on-one supervision, so it gave us peace of mind to know we were so close by.”
Learning to live “minute by minute”
Around this time, Max caught a fungal infection.
“It had taken over his body and spread to his lungs, we were told again to prepare for the worst,” Suzie says. “We feared that we would never see his smile again.
“A new Hickman line was inserted, along with two more chest drains and then things started to change,” she says. “We began to see an improvement, and finally made it out of intensive care and up to the ward – after seven long weeks.
“It was such a relief to get back onto the wards. You just learn to live minute by minute – you have to put the diagnosis to the back of your mind and just get over each hurdle as it comes.
“We practically lived there for a time. We went home for one day, but Max got a temperature from the chemotherapy treatment, so we went straight back into Giraffe Ward.”
For a time, Max’s health continued to improve.
“The tumour was shrinking, and the fungal infection was on its way out. He was smiling again, laughing and dancing, he had everyone on the ward doting on him,” Suzie recalls.
“Max did a great job at harvesting his cells ready for high dose chemotherapy and we were even preparing for surgery to remove most of the tumour.”
“No time is ever enough”
“On the 11 July 2019, our world came crashing down,” Suzie says.
“Max had been for a CT scan that morning to confirm some details for surgery, but surgery was no longer an option, nor was the high dose chemotherapy.
“The tumour had grown, the chemo was no longer working and there was no other treatment available.
“We requested to go home and enjoy what precious time we had left. We created memories that lasted forever. Sadly, no time is ever enough.”
Max’s family took him to Christopher’s (Shooting Star Children’s Hospices) in Guilford to spend his final days there together.
“The palliative care team at Christopher’s gave him medicine so that he did not have to feel any pain or panic with the breathlessness, and on 11th August 2019 at 8.37pm Max passed away cradled in our arms.”
At home at GOSH
“I felt at home at GOSH,” Suzie says, looking back.
“We made friends with the nurses. Sometimes they would come in and give me a hug and make me a toast, I just felt close to them.
“Sometimes we just spoke about what we were watching on Netflix, it didn’t always have to be clinical. They become your friends because you don’t see your friends anymore, you just see the hospital.
“The cleaners just loved Max as well. Max loved it when they came in and danced to the radio with him. I think Max touched the hearts of many people on the wards.
“Even though he was so young, he was still happy to be in the room on the ward – he enjoyed his time there.
"[Staff] also allowed us to be able to say goodbye to him, I’m not sure that would have been the case if we hadn’t been treated at GOSH.”
During their time at GOSH, Suzie became close with the hospital’s Play team. This team helps children make sense of their treatment and recovery through toys, activity and play.
“I also got very close with Lauren from the Play team. She sorted little canvases for us, including one for Mother’s Day,” Suzie says.
“Even when we were in isolation, they never forgot about us and always came to see us, with sensory toys and things so he didn’t miss his milestones.
“Max loved painting, well, just making a mess really! The Play team helped us to get a break; if I needed a coffee, they would look after Max. They could just lift the mood if I didn’t have the energy to think of a game to play.
“Lauren came to Max’s funeral, which meant the world to us.”
“Fundraising makes me feel like I’m being his mum”
Fundraising has become a big part of Suzie’s life.
“[It] helps me feel like I’m still being a mum to Max, because I’m not going to get to take him to football practice, or buy school uniform, so my way of doing that for him is to help other children,” she explains.
“It’s all in his name and in his memory, so it makes me feel like I’m being his mum, I know I always will be.”
In April 2023, Suzie will be joining the rest of TeamGOSH to take on the TCS London Marathon to help build the Children’s Cancer Centre.
“My hope for the Cancer Centre is to create safe spaces for families to process news,” she says. “[And] where there’s gentler treatments, and more hope for families of a cure.”
Suzie and her family have set up a Brighter Future Fund in memory of Max and do lots of fundraising for GOSH and a number of other charities. The Max the Brave Fund website can be found here: http://maxthebravefund.org/
Around five children in the UK lose their lives to cancer every week.
Help us build the new Children's Cancer Centre at GOSH, so we can help beat it.