We lost our 18 month old daughter to leukaemia – more research is needed09/09/2023
Fixing the seat into the back of the car, I took another look at my newborn baby girl, Maggie-Mae, and felt a rush of overwhelming love.
Having just given birth three days ago, I could hardly believe that she was here, that we were taking her home.
Life seemed so perfect. Dave and I had just got married and bought a house. My pregnancy had been straightforward.
The only thing that was slightly concerning was that Maggie had been born with nodules and little lumps all over her body, which had baffled the doctors, and big black circles under her eyes, which I just put down to a traumatic labour.
So even though they’d agreed to discharge us, doctors had scheduled an appointment at Great Ormond Street Hospital (GOSH) for a couple of days later. At that point, nothing had been picked up so we felt reassured; we were able to have a peaceful weekend in blissful ignorance at home.
When we arrived at GOSH, we expected to be in and out that day.
But once one doctor started to examine her, suddenly others appeared, putting in cannulas to draw blood. It was horrible to see my baby – still less than a week old – being poked and prodded.
We were told we wouldn’t be going home, that we were being transferred to an oncology ward and should prepare to see some very poorly children.
Even then, we didn’t think for a minute that Maggie would have cancer.
The following days were devastating. Maggie was put under general anaesthetic twice as doctors carried out further investigations.
And, as she was put under a third time at just 11 days old to have a Hickman line fitted, her heart stopped. Doctors had to massage her heart for six minutes to keep her going.
It turned out there were nodules on her heart too, putting it under strain.
On the same day, we were told that Maggie had acute myeloid leukaemia. I remember staring at the swirls on the floor as my brain tried desperately not to process what we were hearing.
I was shocked, lost for words. Cancer was something that happened to other – older – people, not to newborns. Babies were meant to live, grow into gurgling, grinning toddlers, to be happy.
We were still taking it in when, five minutes later, the anaesthetist came and told us there had been significant complications as they tried to restart her heart; Maggie had become very unwell and was transferred to intensive care.
I remember sitting next to her and begging to know what colour her eyes would be, what colour hair she would have.
This was on the Friday, and miraculously by Sunday, she was being prepared to return to the ward on Monday. The nurse who had treated at her worst cried when she came back on shift and saw Maggie doing so well – staff didn’t expect her to survive.
Luckily, Maggie bounced back so we started focusing on her treatment.
Doctors explained that, while chemotherapy was very dangerous for a baby under six weeks, the leukaemia was aggressive so we made the terrifying decision to start the gruelling treatment.
Against all odds, she responded well. Maggie had needed just one round of chemotherapy and was home three weeks later, at nearly a month old.
Doctors had put her on a diluted treatment plan as they didn’t want to put any strain on her heart. The plan was to get Maggie past six weeks and strong enough for the real protocol, but luckily there was no further sign of cancer, so we could delay that for now.
We initially took her back for regular check-ups at GOSH, and our local hospital would carry out weekly blood checks.
We got to six months and had a party to celebrate. After a year, Maggie still didn’t need further chemo.
In my mind, she was healed – but I was very aware that at some point my little baby was likely to need to live in hospital for full treatment. So every day I did something with her. I said yes to every opportunity for fun and to show her the world.
She’d been on a boat around the Thames, sat on tractors, experienced the beach even in winter. I’d take her to every play session available – she did it all!
I was determined to give her the fullest, most fun life possible.
Then, just after her first birthday in September, Maggie relapsed – she’d had a new Hickman line put in and just couldn’t stop bleeding; she got poorly very rapidly – and we were blue-lighted back to GOSH.
I prayed it wasn’t leukaemia, couldn’t believe it could be, until doctors confirmed it.
She re-started chemo and responded so well to the first and second rounds that we were able to go home in between.
Maggie would watch Disney films in the ward and when isolating at home and seemed to understand everything that was happening.
She was so sociable, never shy. Maggie loved people and would instantly connect with them. She absolutely loved messy play, she would sit for hours painting and drawing, which was a life saver in hospital.
That year, we celebrated Christmas and her big brother Maison’s 16th birthday.
We had been told in October that the treatment plan was a third round of chemo and then a bone marrow transplant to get her into remission. After some delays, this took place in February.
The false starts were stressful and unsettling, but looking back now, I’m so grateful for the three extra months we had with Maggie. At the time I was pregnant with her sister, India-Mae; Maggie used to kiss my belly and India would kick in response to her voice.
I remember looking in the rearview mirror at my baby when we were driving to the hospital. She seemed so well, but I knew how much was riding on this treatment.
Transplant was tough as it can be very dangerous. The ‘conditioning’ is horrific and the side effects are harsh. Her conditioning started on 19 February and she had her transplant on the 1 March.
Maggie played in her Tinkerbell dress on the day of the transplant, day zero. It was so devastating, what she had been through, I just prayed it was enough.
Heartbreakingly, it wasn’t. A few days later on 4 March, doctors told us the leukaemia was back, and Maggie was too poorly for more chemo.
‘But she’s bounced back before,’ I tried to explain. ‘Surely she will this time too…’
The doctor shook his head.
By 8 March, we were told that there was nothing they could do and Maggie was terminal. We knew we didn’t have long so our focus was getting her home with us, snuggling up in bed with her and watching Frozen, her favourite film. Maggie was 18 months old.
Maggie died to the closing credits, hours after we got home.
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The song, Let it Go has a whole new meaning to us now. There was this strange comfort, she’d spent so much of her short life in hospital, undergoing tests and treatment, but now she was free.
The fact that we got 18 incredible months with Maggie was all due to GOSH. Thanks to the hospital, she didn’t die at 11 days old and we got the opportunity to know her, to have time with her.
Since then, fundraising has been my way of bringing Maggie forward with me in life. It’s really important for parents who have lost children to share their stories, to speak their child’s name. Fundraising, for me, is Maggie’s legacy and it’s incredibly healing to be able to channel my feelings in a positive way.
So far, we’ve raised £30,000 for GOSH Charity. A highlight for me was taking part in the 2023 TCS London Marathon in Maggie’s memory as part of their team.
Cancer is still the biggest killer of children aged one to 14. Early diagnosis is key and there needs to be more research.
I’m hopeful the next decade, including the new Children’s Cancer Centre at GOSH, will bring some real changes, so other families won’t have to go through what we have.
Leah is supporting GOSH Charity’s Build it. Beat it. appeal to raise money to help build a new Children’s Cancer Centre at GOSH. Find out more and donate at gosh.org/cancer
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