"She gives me this strength that I didn't know I had”

27 Mar 2024, 4:24 p.m.

Maya looking at GOSH Play Specialist and smiling

The new Children’s Cancer Centre at GOSH will help children like Maya.

Maya was born with leukaemia in April 2023, although it wasn’t until six weeks later that she was diagnosed at a hospital in London.

She underwent chemotherapy, immunotherapy and a bone marrow transplant at GOSH. Unfortunately, in January 2024 her parents discovered she had relapsed. Maya started CAR-T therapy in March 2024.

Maya's mum, Daisy, shares her daughter’s story.

Receiving a diagnosis and transferring to GOSH

“When I was first told it was leukaemia, I wasn’t too sure what the condition was or what that meant for Maya.

“[Doctors] explained it was cancer in the blood. As soon as I heard the word ‘cancer’, it completely took me aback. I wasn’t expecting that word at all.

“Maya’s dad, Matt, and I were told that the hospital we were at couldn’t care for her condition, so we were then transferred over to GOSH.

“A lot happened in just a few days. It was the end of May when Maya was transferred to GOSH’s intensive care unit (ICU). She was there for just over a week as she struggled with her breathing. She then needed to be monitored with scans and MRIs.

“As she had leukaemia from day one, she'd been dealing with it for six weeks and it had got to quite a bad stage when we arrived at GOSH. So, she needed to be strong enough for her treatment to start.”

A special moment during a challenging time

“Being in ICU was really difficult. It was my first time ever being away from Maya. As a mother, your instincts feel like you’re abandoning your baby.

“Maya had oxygen to help her breathe, but within a few days she grabbed the oxygen mask and pulled it off and started breathing on her own! It was like she said, 'I won’t be needing that’. That was a good moment.

“During this time Matt and I stayed in a lovely townhouse [funded by GOSH Charity], which is literally right next to GOSH. You've got a washing machine, an ensuite in your room, you get cleaners every day.

“You're away from home, but you don’t feel it as much when you have your own space. It makes it so much easier to manage everything. You’ve even got a kitchen, so if you don't want to have takeout or eat out in London, because that's expensive, you can cook yourself something.”

Staff support on Giraffe Ward

“After ICU we were transferred to Giraffe Ward [where children with cancer and leukaemia are cared for at GOSH].

“The same week she was transferred, Maya’s cousin Millie was born – she is just six weeks younger than Maya. It helped put a bit of light into the worst week of my life. I just remember waking up feeling like reality had hit, Maya really isn’t well, and then I looked at my phone and received a message from my brother saying, ‘you have a niece!’. It was the news I needed to lift us up.

“The staff on Giraffe Ward made me feel so welcome. They treated Maya as though she were their own. The nurses were so, so caring. Even if I was having a down day, they would just come in to have a chat. They were all so comforting.

“Me and Matt had a huge amount of support at home as well, a lot of our family came up to visit us in these hard times. Matt’s brother would come up almost every weekend without fail.

“At the time there were four babies, including Maya, all similar ages on the ward. They would hang about by the nurses’ desk in their bouncers. It was so sweet; they were all giggling at each other. All the babies had leukaemia, so we were all in the same boat.

“Maya’s older sister Bonnie even made friends with the nurses on the ward. She'd leave the door open to Maya’s room because she liked to see the nurses walk past. She’d stand by the door and say proudly, ‘You can come in and see Maya if you want’. I'm so proud of her. Bonnie also loves singing! She'd stand by the nurse's reception desk and she'd sing ‘this girl is on fire’ or ‘this Bonnie’s on fire’.

“She's so mature for her age and so caring. I've just been gifted with two amazing daughters.

“Bonnie loves GOSH. She loves the Disney Reef; that makes visiting so magical for her. She doesn't see GOSH as a hospital because it looks so beautiful. There's so much there that just makes it so special.”

Maya looking through window of GOSH room

Chemotherapy and immunotherapy

“Maya had 22 days of chemo. In between those days she’d have lumbar punctures and intrathecal chemo.

“The chemo was tough on Maya. She got mucositis [mouth ulcers]. She was also on steroids, which made her so grumpy.

“Maya also got a few bugs, as her immune system was down. But she's so strong, she is always smiling even when she's poorly. There was never a day when she wouldn’t smile at least once or twice. She's always been such a happy baby.

“After all the treatment, we came home and she was on blinatumomab [a type of immunotherapy]. This was delivered through a box, that gave her a constant flow of medication for four weeks. The box had to be changed every four days, so we'd come up to GOSH to have it changed regularly.”

BMT and life on Fox Ward

Maya returned to GOSH in September 2023 for a bone marrow transplant (BMT).

“The BMT ward, Fox Ward, is completely different to Giraffe Ward, because they need to protect children from infections.

“There's a porch-like room you go into before going into your room, and you have to wash your hands, arms and put on a mask and an apron. The nurses and the doctors only come into your room if absolutely necessary, and there's an intercom in the room that they talk to you through. There were no visits allowed on this ward to keep Maya as safe as possible. This was hard as Bonnie missed Maya a lot.

“From the sound of it, I initially thought the ‘transplant’ would be only one day, but it takes time. You need a week of preparation before you even get the blood transfusion.

“We had doctors come and see us regularly, but the build-up to the BMT with all the chemo was just so intense. Maya started to get really poorly.

“When your child has no immune system, everything is heightened and much scarier. It’s really hard seeing how toxic the chemo is. Her skin started to deteriorate with blisters and rashes and literally split it was so sore. It makes them so much worse, before they get any better.

“Maya’s BMT was on the 18 September 2023. The day of transplant was brilliant. We felt it was a real positive that her transplant fell within September’s Childhood Cancer Awareness Month.”

Maya looking through the glass window of her room. Her sister is the other side, holding her hand out to her.

Maya and her sister

Relapse and planning for CAR-T Therapy

“We were in GOSH for a long time after the BMT, then finally rang the end of treatment bell and went home in early December.

“Within a few days I noticed something wasn’t right. We had to go back into our local hospital because Maya’s sodium levels had dropped. She was an inpatient for a week.

“Then we had a few days at home, but she was poorly – she was throwing up and was really dehydrated, so we went back into GOSH. Her sodium levels had increased, but they were too high now and she was at risk of a seizure.

“She went back down to normal levels, and we went home and she was fine – smiley, happy, absolutely no signs of any illness. Then we got a call from GOSH, Maya’s weekly blood tests had shown her white blood cells were higher than normal. They took a blood sample to the lab, to have a closer look and see if it was leukaemia cells – and it was.

“The call was really unexpected, because she was so happy at that point. We went back to GOSH that night. It was mid-January, we’d had a total of just 12 days at home between the BMT and the relapse.

“At GOSH, Maya had a bone marrow test and a lumbar punch. The tests showed the leukaemia was back really aggressively."

After discussing Maya's options, Daisy and Matt decided it was best for her to have a new type of CAR-T therapy on a clinical trial.  

“This [treatment] is really new… – researchers at GOSH have been working on it. 

"I thought, if anything happened to her when she had this, she’s helped other children around the world – and if it does work then that’s amazing.

“We have returned to Fox Ward to have this treatment, which we are so happy about as we are familiar with the team, and they are like our second family. They are so supportive and have helped us through this journey.

"One of our nurses on the research team looking after Maya used to work on Fox Ward and watched Maya go through her BMT journey.

“She will now continue this journey with her and help others go through what Maya has been through, which is just so special.”

A life-changing journey

“Maya gives me this strength that I just didn't know I had. When she's around me, she just gives me this feeling.

“I've always wanted to be a nurse, even before Bonnie was born, but this journey we’ve been on with Maya is life changing. What we've gone through, seeing what all the nurses do for Maya, has made me realise that I can do this as well.

“I know now that I'd love to specialise in oncology and child cancer patients, so that one day when all this is over, I could give back and help other children that have gone through what Maya's been through. It’s almost like my calling.”

The Children’s Cancer Centre

The new Children’s Cancer Centre at GOSH will offer an increased capacity for research studies.

"Research is the most important thing, it’s incredible," Daisy says.

"It helps doctors to understand what’s going on with the children, and that means there’s more chance of more children getting better.

"There’s a chance to make their futures more normal, and that’s what we all want."

Learn more about the Children’s Cancer Centre and our Build it. Beat it. Appeal

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