In 2011, seven-year-old Ayesha Siddiqui was diagnosed with leukaemia, and her parents were told she’d need a stem cell transplant from an unrelated donor.
Finally, Ayesha’s transplant is going ahead – and as the day itself approaches, her mum Noreen reflects honestly and movingly on her emotional journey.
As we near the date of Ayesha’s stem cell transplant, I feel a sense of creeping optimism.
It seems only a few weeks ago that we were informed of the decision that a stem cell transplant should proceed ASAP, and we had a donor with a suitable match – I found it difficult to process.
To be honest, I think I was in denial. Ayesha was managing a reasonable quality of life, was attending school on a regular basis, and was a trainee teenager in the making. Her hair was growing down to her shoulders, a beautiful glossy brunette with great big curls.
She loved to be dressed in leggings, tops, leather 'look' jacket and converses on her feet – hanging out with her friends and talking in secret about the usual things that eleven-year-old girls talk about.
I didn’t want the stem cell transplant to change that. I felt as if I was being forced to go through a door and enter into a different reality – one that I did not want to enter.
I could feel the knots in my shoulder muscles as the day of her admission to start the treatment came closer. Like an express train, speeding faster and faster with no opportunity to slow down.
Ayesha, testing out her martial art skills
So now that she’s had radiotherapy, chemotherapy (and various other medicines that a non-medic can’t hope to pronounce, never mind understand), attached to a drip, sometimes two…I feel unexpectedly grateful.
Grateful that more than four years after diagnosis, Ayesha is still growing, still cheeky and causing me great concern, just like any eleven-year-old girl.
Grateful that we’ve had the opportunity to raise awareness of Anthony Nolan and fundraise £200,000; grateful that we’re helping to bring the R&Be education programme for 16-18 year-olds into Scotland.
And most importantly, we’ve had the overwhelming support of family, friends, work colleagues and supporters, and met some amazing people, too.
I'm so grateful that Anthony Nolan, a charity that helps to save the lives of people with blood cancers, provides the service of finding a match, recruits donors, and undertakes and supports research as well.
And finally, I feel very, very grateful that we are in the position to go ahead with a stem cell transplant, when so many people are waiting to hear the news of a match. (I'm thinking that once the transplant has taken place, I’ll treat myself to a cream cake!)
Ayesha, Noreen and family, posing for a #AyeshasWarriors selfie
I'm in complete awe of Ayesha, as well; watching her make the best of the situation she’s in, charming everyone because she’s so chatty and smiley.
While we were at the Beatson Cancer Centre, watching her undergo radiotherapy, it was very difficult.
But then I hear her shouting something funny – she plays word games with the nurses, and manages to persuade them to play Taylor Swift while she’s having treatment. She wants people to do cartwheels down the hospital corridors, as well!
Ayesha, trying a serious face
After the transplant Noreen started a diary to keep track of her daughter's recovery. Read her latest updates:
1 November 2015
I can't believe how good Ayesha’s looking as she has her stem cell transplant- she looks very healthy. It is unbelievable that someone who looks as healthy as Ayesha has leukaemia!
The stem cells are no more than a bag of blood and Ayesha is laughing and joking throughout. This isn’t how I imagined it, Ayesha joking and laughing. She still has all her hair; I’d expected it would be all off now.
Afterwards, she wakes up grumpy; she has a sore throat and mouth ulcers, which is expected – then later she apologises for being grumpy. Just imagine, Ayesha who’s just had a stem cell transplant, apologising for her grumpy behaviour!
When I ask her what she would like to wear, she says with a cheeky grin, ‘I want to wear your hugs, Mama’ – life is good!
Ayesha finds it difficult to eat due to her sore mouth. The menu at hospital is very reasonable, and the halal menu does provide a good choice, but she decided to offer a suggestion – her granny's spinach pakoras, parathas and egg and potato omelettes with spring onions. Not sure if it will be added to the menu!
2 November 2015
The next few weeks are going to be tough. Ayesha's mouth will get worse – this is a side effect of the treatment. She is losing weight, as she is not eating but nibbling on soft foods. She did manage tomato soup through a straw!
In addition to her lack of food intake and weight loss, her hair is starting to fall out – those lovely chestnut brown curls will go and she will lose her hair again!
She is desperate to have long hair hanging past her shoulders, but she does not have the patience to wait. She asked me, ‘Mum, will you laugh at me when my hair falls out?’ I told her, of course not.
Her mouth is extremely painful and she is now on morphine syrup twice a day, in addition to paracetamol four times a day. She looked at me and said, ‘Mum, do you know? If you don't need morphine you shouldn’t take it.’
Wise words indeed from an 11-year-old girl.
Funny how quickly your life becomes hospital-home-hospital. I feel as if I’ve entered another reality; I haven’t read a paper in 10 days, and have no idea what is good to watch on telly.
3 November 2015
What a terrible night; between 10.30pm and 8am, I think I was up 10 times.
If it wasn't Ayesha needing to go the bathroom, it was the drips beeping as the infusions had finished.
The lack of sleep makes one exhausted on top of the stress in dealing with the illness. I normally try and have a good morning routine; I always make sure that Ayesha is awake, has a wash, and is wearing fresh clothes for the doctor's rounds in the morning.
I think we will leave that for the next few weeks and let Ayesha sleep when she wants to.
As Ayesha has an itchy scalp and is losing her hair, she finds great comfort in having her hair brushed and styled – ‘Play with my hair, Mama’ – but when she sees the hair on her sheets or pulled out of the hairbrush, it causes her some distress. Need to work out a strategy for her hair today.
Tough love is very difficult when your daughter is having a stem cell transplant, losing her hair, crying her eyes out because she can't take her tablets and is desperate not to have a nasal gastric tube...
Then when she is sitting on your lap, gently rocking back and forward, wanting big hugs from her mama, she says, ‘I really want some pakoras.’ Only Ayesha can come out with something like that! Yes, she is still strong, and so is her mama.
She is sleeping soundly now. All is quiet. And I can't wait until she is back at school, wearing her school uniform, walking to school, chatting with her friends and getting into trouble for talking in class.
5 November 2015
She is still asleep. With very little hair she looks frail. She is surviving on chocolate milkshakes prepared by the dietician and tomato soup taken through a straw.
This is when we all need to be strong. This is the time for Ayesha's Warriors to show their support.
6 November 2015
Ayesha has a lot of ulcers in her mouth and is on morphine. The pain management nurse is now a regular visitor. She was told that her mouth would be affected, but she did not realise it would be so, so painful - fortunately, she is now on top of her oral hygiene. She still finds it had to swallow.
She is in the bathroom brushing her teeth and she is looking at herself in the mirror. Most of her hair has gone and she has dark dry patches on her face as a result of her treatment.
I ask her what she sees in her reflection - she shrugs her shoulders, makes a funny face in the way of pre - teenagers. So I ask her "do you see someone who is ill?" She replies " no, I see someone who wants to get this treatment over with quickly so I can go to nanny's house for pakoras!" - I really hope the pakoras are good when she has them.
8 November 2015
She is on good form and insists everyone watch the apple crumble song from "Brittain's Got Talent" which has all the nurses singing and laughing. She then stands on her bed, puts her arms out and shouts " mama do I have bingo wings?"
Later she manages to have 1 tablespoon of tomato soup and eats 6 skittles with her medicine - baby steps in the right direction...But I'm not allowed to take photographs of her - not yet.
To show your support for Ayesha while she’s in isolation, you can post your own message or warrior photo on Twitter, Facebook, or Instagram, using the hashtag #AyeshasWarriors.
To learn more about how Anthony Nolan supports people affected by transplant, visit our Patients and Families webpage.