A world turned upside down

Aiya

It is every parent’s worst nightmare.

Being told the news that your young child has got cancer.

A world turned completely upside down in less than 24 hours, and the fear and painful uncertainty of what is to follow.

That was what happened to Amira Mumtaz, and her husband Taz, from Solihull, when daughter Aiya was diagnosed with leukaemia just a month before her second birthday.

And, as so often happens with such devastating news, it came as a huge and unexpected shock.

“Aiya had always been a poorly baby who had struggled with different illnesses but we never thought it would be anything too serious,” says Amira.

“We had been to doctor’s so many times and they would say it was something viral and just to go home and keep monitoring her in case it got any worse.

“It was one Friday afternoon, about 4 o’clock, when she wasn’t well again, and she had turned the same colour as the laminate flooring she was lying on.

“I phoned my husband at work and sent him a picture and he suggested I call the doctor’s.

“At that time on a Friday evening, I was never expecting to get an appointment, but they told us to come in at 6pm and that someone would see her.

“That seemed a bit strange, and when we got there, whether it was because it was a different doctor to normal, with a fresh pair of eyes, he really checked Aiya all over and also noticed some bruises on her.

“He said he wanted her to go for a blood test, and that was when I thought it must be something I’ve done, because I am anaemic and vegetarian.

“I had been giving Aiya meat substitutes but I was thinking, ‘oh god, because of this I have made her ill’.

“Even so, as we headed straight off to Heartlands Hospital, I just thought they would do the test, maybe give Aiya some medicine or iron tablets, and all would be fine.”

Sadly however everything was not fine.  Far from it.

The horrible enormity of what the family were now facing was just a few hours away.

“Those first 12 hours were absolutely awful,” Amira recalls.

“Aiya must have had five different blood tests, and trying to get blood out of her little veins was so difficult.

“It would either come out bright red and be squirting everywhere, or it was thick and sluggish and they just couldn’t get it out.

“We weren’t really getting any answers, and then one doctor – and I remember it vividly – asked me to explain why Aiya had got so many bruises.

“I thought they were suggesting that I had hurt my child, and, while I absolutely understand it from a safeguarding point of view, it was such an awful feeling.

“We were in an isolation room, and it was about 8 o’clock the next morning when a different consultant came in.

“Aiya wasn’t making any fuss at all about all the tests that she had been having, but my heart was racing, as a nurse came in to sit with me.

“And then came the bombshell.

“’We are 90 per cent sure that Aiya has got leukaemia’.

“’So they don’t think I have hurt her’, I was thinking, ‘so that’s a relief’.

“But very quickly I was asking: “What is leukaemia?” Because I had no idea.

“As soon as they said cancer of the blood – just that word cancer – that was it.

“I had very quickly moved from the relief that people didn’t think I had been hurting my daughter to a dagger through the heart because you have told me that my child has cancer.

“From there, it was a complete whirlwind.”

The consultant explained to Amira why they could only say they were 90 per cent sure, as it would take a bone marrow sample to confirm the diagnosis, and the family were quickly mobilised as Aiya went by ambulance to Birmingham Children’s Hospital.

Once it was actually 100 per cent confirmed, and everyone accepted the diagnosis, she began her treatment on the following Tuesday.

And with that came all the desperately concerned thoughts and fears of so many parents who have gone through the unbearable sequence of events of seeing their child diagnosed with cancer.

Occupying a tiny bay in Ward 15, among so many poorly children, many with many so tubes attached, having lost their hair, or only able to move around in a wheelchair.

“The first time I took Aiya in, it just felt so overwhelming that I had to put her on the bed and run off crying,” says Amira.

“I have seen Taz cry on a handful of occasions, and once he had accepted the diagnosis and what was happening to Aiya, that was one of those times.”

As the treatment started, there was effectively a nine-month period where Aiya was rarely allowed home.

She suffered from ‘infection after infection’, including to her Hickman line, and then sepsis, as the treatment which was aiming to cure her also inflicted its own damage on such a young and frail body.

She also broke her leg because of a weakness due to bone density, and, even now, has respiratory problems which necessitate the use of an inhaler, scarring on her lungs, slight issues with her hearing, eczema, and ended up needing more blood transfusions during the maintenance phase of treatment than while undergoing intense chemotherapy.

“Every parent will say their child has gone through a rocky ride, but Aiya has certainly had it really tough,” adds Amira.

“Her blood tests have not been within normal range for three years, and her bone marrow has taken so long to recover.

“With all the problems she was facing we all did get to the stage at one point where we just wondered: ‘When is all this going to stop’?

“But the leukaemia was cured, fortunately, and Aiya  got to ring the bell at the end of two-and-a-half years of treatment in July, which was a very emotional moment.

“However even then, two days later, she caught chickenpox…

“It has been such a rollercoaster, but she has just come through everything though in such an incredible way.

“She is so young, still only four, but the best way I can explain it is that she thinks all of this is just normal.

“And in a way, I am glad.

“She doesn’t understand how strong she has been or the enormity of what she has gone through.

“When she was poorly, she just knew she would have to go to the ‘nice hotel’ which was Waterfall House at Birmingham’s Children Hospital, or if she’s got to have a chest x-ray, or another procedure, she would know exactly what was coming and just get on with it.”

Clearly such a strong little girl, but it wasn’t just the physical effects of the illness for Aiya but also the emotional impact on the entire family, which is shared by all who have loved ones battling blood cancer.

“It was hard enough for myself and my husband, but also for our son Zain,” Amira explains.

“We had to get into a situation where everything was all about Aiya – understandably so – and that made it really difficult for Zain.

“It is not like we were deliberately pushing him out, no parent ever wants to do that, but I was having to be with Aiya and my husband needed to keep working to keep the family going.

“For a long period Zain would go to Taz’s parents’ house, and, given he has a diagnosis of autism and ADHD, we wondered how he would be able to cope.

“He had lots of counselling and CBT (Cognitive behavioural therapy) sessions, and it must have been so difficult to watch his baby sister go through all this and go to school and say he was fine when actually he wasn’t.

“There were some brighter moments during this time.

“Zain is a Chelsea fan, and the club’s Foundation were great in organising for him and Aiya to meet the players after a game last season, which he really enjoyed.

“He has had to grow up so much, and that is hard to take as a parent when you just want him to be enjoying his childhood.

“I do look back and think how on earth we have all managed to get through this, but also, many times, I have thought about why I am sitting there crying when my two children have been so incredible.”

Now, at long last, even with Aiya’s continuing appointments for the medical conditions which linger on as a result of her treatment, the family have been able to return to some form of normality.

During the summer holidays they enjoyed a few days in Blackpool, Zain has joined a local football team, and Aiya has started at school.

While she hates using the word ‘normal’, Amira admits it is certainly extremely welcome to be trying to find some form of routine, as she herself prepares to dig out the running shoes to take part in this year’s Simplyhealth Great Birmingham Run, to raise funds for Cure Leukaemia.

“We were at Blackpool, and Aiya was running in and out of water sprinklers and going into the swimming pool, and I just thought that this is what children of her age should be enjoying doing,” she says.

“She had never experienced it before, but she was loving it, and the hope is that these sort of experiences do become normal for her now.

“I hate using that word ‘normal’, but for Zain too, hopefully he will realise that it doesn’t need to be all about Aiya any more as well.

“For me, I want to do the Great Birmingham Run to help Cure Leukaemia, and the fantastic work which they do.

“The treatment for the disease is so brutal, and you want the leukaemia gone but hopefully one day there will be a kinder way to do it.

“I know with all the progress that Cure Leukaemia are making, and the trials that patients are taking part in with newer drugs coming in all the time, that things will improve for patients.

“I still don’t think childhood cancers are talked about too much – I didn’t even know what leukaemia was – so I’d like to raise awareness as well.

“I have done a few 10k races before, but never a half marathon, so I will definitely have to push myself.

“But I have also been inspired by Steph Price, who I know, and her son Harrison, who has a different form of leukaemia, and how incredibly well they are dealing with everything and just getting on with their lives.

“So many families have their own struggles to cope with, and I just want to try and do anything that I can to help.”

*To support Amira’s fundraising, and support Aiya in her continuing recovery, click here.