Isla-Mae's story

Isla-Mae was diagnosed with acute lymphoblastic leukaemia in 2020, at the age of just two.  Her dad, Reece, shares their story.

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Girl with feeding tube in towel

We noticed spots and bruising all over her body

On the 4th May 2020, Isla-Mae was rushed to hospital after a few weeks of high temperatures and swollen tonsils. In the previous weeks we had the ambulance service out and online consultations with the GP and everyone said she was fine and it was a case of tonsillitis.

But at the beginning of May, Isla-Mae got worse and we noticed spots and bruising all over her body. We rushed her to hospital and after seven hours of tests, the doctors came back to us with the worst news we’ve ever heard – she had leukaemia.

We nearly lost her

They transferred us that night to another hospital in Nottingham and on the 5th May she was rushed to have surgery and x-rays, including a bone marrow surgery. Whilst this was happening the doctors noticed she wasn’t breathing correctly and this led to even more bad news. They have found a huge tumour on her left lung, which then led to her being on life support for three to four days and asleep for that long too. The doctors tell us now that on that day, we nearly lost her.

 

girl playing with toys in bed

The intensive treatment that followed

After a lot of surgery, tests, blood transfusions and chemotherapy, we were told that treatment was working well. Obviously this was all happening during the coronavirus pandemic and my wife was heavily pregnant. I wasn’t allowed to visit for two weeks whilst they were in hospital, which was so hard. Thankfully Isla-Mae was allowed home after two weeks, so I was able to be with her and care for her.

The weeks that followed were torturous for us, having to watch her hair fall out and see how her body was reacting to the harsh treatment was really shocking. I just couldn’t believe what her little two-year-old body was having to go through.

The whole experience has been heartbreaking for us, but the biggest shock was that Isla-Mae had always been a happy child, even when she was ill, so we never suspected her diagnosis. Even on the days leading up to her diagnosis, she was showing no sign of cancer and happily playing with her toys.

 

Girl with feeding tube and bandana

The long road ahead

After weeks of chemotherapy and treatment, Isla-Mae was rushed to hospital again with an infection in her tubes. She is still in hospital with a racing heart, which we have now been told is due to a blood clot on her heart. My wife gave birth whilst this was happening, so it’s fair to say that we’ve all been taken on a bit of a roller-coaster ride recently.

I wouldn’t wish what Isla-Mae is going through on anyone and I get frustrated when people tell us that acute lymphoblastic leukaemia isn’t the worst cancer – it really doesn’t make it any easier.

In terms of what lies ahead for Isla-Mae, everything is still unclear due to the blood clot on her heart. She has two and a half years left of treatment, but at any moment she can be back in hospital due to complications and infections. Life is therefore incredibly uncertain and scary at the moment and we’re going to have to take things day by day in order to get through the long journey ahead.

June 2020

Girl with bald barbie

Update July 2021

Isla-Mae is still having treatment and is due to finish in September 2022. Isla has been doing well, but obviously has had bad days. She’s still struggling to walk properly since she’s started treatment and still has medication to take two to three times a day. She’s now in what they call “Maintenance” stage, so we are only really in the hospital when she has a lumbar puncture or bone marrow test or when she has her strong chemotherapy which is once a month at the moment.

Isla asleep in bed July 2021

We thought we had lost her

But we have had a few scares at the start of the year. In February 2021, she kept on having a temperature which she has to go to the hospital straight away but the doctors would say nothing was wrong with her as her temperature went down as soon as we got Isla there. On some of the occasions she had a blood transfusion, but after the third blood transfusion after spiking a temperature she was really poorly and was in hospital for around 10 days. We thought she wasn’t coming home. Doctors did five different tests, and still nothing, at one point she passed out which I thought she died. Then she had a bad reaction to some medication she had been given which caused Isla to go on gas and air with the doctors saying to us; “if she doesn’t improve soon, she is going to end up in intensive care.” She was seriously ill.

Isla and dad lying in hopsital bed July 2021..

She going to nursery

But like all through this she amazes us. She pulled through it and go better and did come home. She now goes to nursery twice a week, which scares the life out of Laura and myself. But she loves it.

So as I write to you today (27/07/21), she is in a lot of pain with her legs, she had a blood test recently which we have to stop giving chemotherapy at home because one of her counts were low, but other than that she’s doing well. As parents the tears never stop in private moments but now they aren’t everyday like they were.
Reece, July 2021

Isla in nursery uniform with cap

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