Posted on Thursday 29 July 2021

Aleesha’s story: “the bottom of my world was ripped out from underneath me”

In August 2019, Emma became concerned as her daughter, Aleesha, was losing weight quickly. At first, she was worried it might be an eating disorder. She also looked really pale but as it was a side effect of tablets she was on at the time, Emma didn’t put the two and two together.

Later, bruises started to appear. Emma grew more and more concerned and so took her daughter to the doctors to get checked, she booked an appointment for the doctors. However, a couple of days before, a rash appeared.

“I showed my sister, who is a nurse. She said she had never seen a rash like it before. At the doctors, the Nurse Practitioner immediately booked in Aleesha for blood tests 3 days later. The 16th of October 2019. That day our life changed.”

Aleesha went to the doctors to have a blood test in the morning, and was then dropped into school while her Mum went about her day. Emma missed a call from the doctors, she called back and the receptionist said it was just to rebook a blood test.

“The doctor then called saying ‘I have been trying to get hold of you, you need to get Aleesha to Kingfisher ward in Dorchester now’.”

Emma had a bad foot at the time but took her boot off and got to school to pick Aleesha up. She called her Dad on the way and said to meet them at the hospital – who had been calling them in the meantime asking where they were.

“It was all rather terrifying. Olly [Aleesha’s Dad] met us up there and on the ward they started asking us what felt like strange questions i.e. involvement with social services, who lives in the household. I couldn’t make out what they thought was happening to her. Did they think she was being abused?

“Then I saw them feel her lymph nodes in her neck and my stomach sank. I started getting this feeling of deep dread. They took Olly and myself into a separate room and said, I’m really sorry to tell you this but your daughter has Leukaemia.

“There are no words to explain how I felt, the bottom of my world was ripped out from underneath me. The doctors said it wasn’t a good idea to tell Aleesha until she gets to Southampton tonight.  We said there is no way, she is too grown up not to be told this, she knew something was wrong and we were not going to hide it from her.

“I just felt numb really when told her. Aleesha cried when she was told and didn’t cry again she simply shut down her emotions until after her treatment.”

Emma recalls how surreal it felt, waiting for the ambulance to Southampton and having to tell Aleesha’s grandparents the news over the phone. She said it only felt real once Aleesha started treatment.

Once transferred to Southampton hospital, Aleesha started a trial, almost straight away. Aleesha’s family had been told that a test showed she was more at risk of the leukaemia returning, which helped them to plan her treatment. She had two rounds of chemotherapy and then a bone marrow transplant. They were told to expect long stays in the hospital.

They were told Aleesha would probably be infertile due to the treatment.

“She was given the option to have the tissues from ovary frozen, but she decided against doing it, as they couldn’t guarantee the leukaemia wasn’t in the tissue. It was such a difficult decision for a 13 year old to make. As much as she wanted to have a baby, she didn’t want to put herself or a baby at risk.”

After just over a month, Aleesha went home in November 2019. They knew she wouldn’t be able to be at home for Christmas so they had a party with friends and family and put on a full Christmas dinner a month early.

The next time they went in, just before Christmas, their Young Lives vs Cancer social worker, Clare, helped them to get a room in Jean’s House a nearby Home from Home so family could stay nearby while Aleesha was having treatment.

Aleesha’s second round of treatment started in December, and lasted for six weeks. This meant she was in hospital for Christmas. Aleesha’s sisters and her Mum’s partner, Steve, would stay in Jean’s House at weekends so they could be with Aleesha as much as possible.

“On Christmas Eve the staff made the ward really lovely. We had a nice evening in Jean’s House and got ready for the next day – went back on the ward and the doctor said you can spend the day in Jean’s House!  We had taken all the presents over in the night, and had to take them all back!

“We spent the day at Jean’s House, Aleesha loved helping in the kitchen, we opened all the presents under the tree. A day that wasn’t going to be very nice in a hospital room became so special.”

By mid-January Aleesha was still in hospital as her blood counts hadn’t returned back to normal. She started developing a cough, which she needed oxygen for. She had an infection on her lungs. One night she had blood clots in her nose and wasn’t breathing properly so was rushed to the PICU and put to sleep for 24 hours.

“We went off to Jean’s House, I sat in the kitchen, being there with Lorraine (Home from Home Manager) was so lovely, she didn’t say ‘it was going to be alright’ or anything, she was so wonderful, made me tea, made me distracted.

“She was in PICU for a week. I wasn’t allowed to stay the night, so I would go over in the night, going over just to take Aleesha to the loo as she didn’t want her nurse to take her. Lorraine said, I can help you with your washing. I had to keep washing her duvet as Aleesha quite rightly wanted her own things.”

On March 5 Aleesha was transferred to Bristol Children’s Hospital to start pre-transplant chemotherapy and immunotherapy and then on 13 March Aleesha had her bone marrow transplant.

Just as Aleesha had her transplant, the national lockdown came into effect.

“On the Bristol ward in the parents kitchen there was only a microwave. You could only swap with another parent, Steve was at home with the other two, and the difference with not having a CLIC House was immense.

“Aleesha and I have such an amazing relationship but it was really hard, being in a tiny room 24 hours a day. Bristol is over 2 hours away from Weymouth, I would have to drive home in the evening once she was asleep, Steve would go early in the am, so I could do all of our washing and cook, it was such a difficult time.”

Soon, Aleesha’s blood counts had recovered and she was doing well but the doctors wanted to keep her closeby. Sam’s House was still closed but CLIC House, another Home from Home nearby, agreed to open just for them.

“Just for Aleesha being able to sit in the garden was wonderful to see her face!”

Aleesha soon went home to be with her sisters and family. While she has had a few scares and admissions since, she is healthy and doing well. Aleesha, however, has been struggling with the emotional impact of what she has been through – she started having panic attacks.

“It’s hit her now what she has been through. She loves schools but she spent 2 years away from everyone her age, she is struggling with it.”

Now, after treatment and shielding, Aleesha and her family are looking forward to slowly getting back to seeing friends, family and going back to school. Mum Emma says the support of the Homes from Home meant so much to them.

“The home has everything you could ever wish for and more and it really does feel like a home away from home.

“Without the support of Young Lives vs Cancer I honestly do not know where we would be now and without Lorraine I think I would have fallen apart. Jeans house and the staff there will always have a truly special place in our hearts.”

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