Kirsty’s story: Her Journey with Down’s Syndrome and Leukaemia

Life changed for everyone in the family when Kirsty, who has Down’s Syndrome, was diagnosed with Acute Lymphoblastic Leukemia in 2016.

While on holiday in Scotland, Kirsty, who had turned 15 the previous week, started to feel faint and sweaty and once back home, collapsed following a dance performance. She was admitted to Sheffield Hospital that afternoon following a blood test.

Janet said: “Kirsty left the house that morning, looking forward to her dance performances. We couldn’t believe that the day was ending with Kirsty to being admitted on a ward. It all just happened very quickly. We couldn’t believe just a week ago we were on holiday and it was Kirsty’s 15th birthday. This has now changed her life. She had really long black hair, she was a girl who loved dancing, she was very confident, she was loud but also a teenager who was sometimes moody. She loved her lipstick, she wanted a boyfriend, she was thinking of going to college. We were in the process of thinking of what the next stages in her life would be, and then life just stopped.

“Having a learning disability, Kirsty didn’t probably fully understand what was going on, she could tell we were upset. We were crying and she was consoling us saying it’ll be alright. I kept stroking her hair because I knew that was one of the things she was really going to miss, she loved flicking her hair when she danced.

“Having Down’s syndrome made things more complicated in terms of what medication and chemotherapy drugs she could get.One of the drugs had to be omitted because it gave very bad side effects to children with Down’s Syndrome so she had three out of the four chemotherapy drugs during the first four weeks.

“Her temperature threshold to be admitted for antibiotics was also lower because of the Down’s syndrome. She was more immune compromised than somebody without Down’s syndrome.

“She was in hospital for about 11 weeks, longer than anyone expected, because of complications, side effects, infections and she was really, really unwell.

“We saw her every day, one of us would stay overnight then come back in the morning, catch up with sleep, pick up Melissa from school give her her dinner and we spent time together as a family at the hospital almost every night.”

The impact was felt acutely at Christmas, a time of tradition for Kirsty and younger sister Melissa who would under normal circumstances relish in starring in their local pantomime and dressing the tree.

But with lengthy treatment and with added complications due to Kirsty’s disability, festivities were very low-key when she returned home just before Christmas after four months of treatment.

Janet said: “It was a funny time, mixed with different emotions, both happy and sad.

“Kirsty had lost her hair and looked really unwell, she was still going through chemotherapy so looking back on previous Christmas photos and seeing the difference was the sad element.

“I was very happy that we were together and seeing both our girls together was lovely.

“We didn’t know what to expect earlier that year and could not think ahead, we dealt with things day by day at that initial stage.

“We wanted to make Christmas as normal but as special as possible.”

Kirsty was on treatment for two and a half years before going in to remission, during which time the family were supported by a Young Lives vs Cancer social worker.

Janet said: “Without the support of Laura we would have been quite lost because it is a different form of support. It is from somebody who knows and understands what families are going through. I think this is where Young Lives vs Cancer Social Workers come in.”

Kirsty’s treatment did not finish until January 2019 so Christmas in 2017 and 2018 focussed on simple things.

Janet said: “Everything we did we worried if Kirsty would be well enough so it was a huge achievement to just do a small thing, like getting out of the house and going to a restaurant.

“We appreciated having time as a family at home, it was something to be very grateful for.”

Sadly, Kirsty relapsed in August 2020, during the pandemic, following a routine blood test.

Janet said: “She was well, and just before then we were all looking at Kirsty thinking she’s got her hair back to the length it was, she’s dancing, she’s looking like she did, her personality was back so it was a big blow.

“I was really concerned about how we were going to cope as a family. Neil and I often thought about other families dealing with cancer with the horrible virus around and how much more anxious, confined and lonely the families would be, we were terrified.”

“Kirsty couldn’t see Melissa for 5-6 weeks but there was a little window at the Hallamshire Hospital where Kirsty could see people if they were in the car park so she would shine a light and people could see the light and she could see them so family and friends came and waved there. We had friends from the dance troupe who did a big banner and you could read it, it was lovely but we were in tears.”

Kirsty’s underwent CAR-T infusion treatment in London and the family stayed in one of Young Live vs Cancer’s Homes from Home for nine days in December last year before travelling back home.

Janet said: “Paul’s House was a beautiful house to stay as we waited for Kirsty to be discharged. The place felt festive and we received some lovely gifts that were donated to Young Lives vs Cancer.

“Emotionally it helped her, she was happier, it felt like a step from being out of the ward. Even though she needed medical attention, it felt like she was being discharged to a hotel. We could use the kitchen, I could cook and we could also order take away. We could also freeze food to last us the week. It gave us more freedom.

“Kirsty was discharged from hospital on the Monday at 10pm and Christmas day was the Friday, but it wouldn’t have mattered if we had got home on Christmas Eve, we would still have been so happy to be back for Christmas.

“Christmas in general was definitely a distraction for us. From the time Kirsty was admitted to UCH, that was our aim, to have her home at Christmas.

“We had a Christmas countdown up in her room and Melissa also had one at home.

“Melissa has been so resilient throughout, she has just been happy each Christmas to have the tree up. All she wanted was Kirsty to be home for Christmas and the family to be together.

“Since 2018 we have put the Christmas tree up early, which we will also do this year, because of the unpredictability of what December may look like. We have had so much thrown at us.

“Both the girls had their countdowns, they were counting down until Christmas but also counting down the days until Kirsty would be coming back home.

“The hospital room was full of pictures of Christmas scenes Kirsty coloured in, posters, Christmas chains, felt decorations and festive lights on her window. Her room looked like a magical castle for Princess Kirsty.

“We needed a focus and something to look forward to as we prepared for a long hospital stay. Christmas was what we chose as something to look forward to. People must have thought we were Christmas mad but it was magical, we had lots of lights everywhere.

“We had to put our creative hats on to make Christmas 2020 a special one, despite Covid. We needed to celebrate Kirsty completing her treatment and us having family time together.”

Kirsty has now been in remission for 11 months although she still needs monthly hospital visits for infusions because her immunity is down from the CAR-T treatment. She has started college and is dancing again.

The family is looking forward to its first ‘normal’ Christmas since 2015 and Kirsty and Melissa will be on stage performing Beauty and the Beast at a theatre in Sheffield.

Janet said: “We are looking forward to it just being the four of us.

“Kirsty’s hair is growing, and to her that is a sign of getting well. But there is the scar that stays on. After the first time it was bad enough but after the relapse the scar is even deeper. There is always the inner fear and worry, even though things are moving on. I pray and have faith. I hang on to hope.”

Janet is sharing her family’s story this Christmas to help Young Lives vs Cancer so they can provide a place to call ‘home’ for other young people and families.

Your donation can give Christmas back to young cancer patients and their families.