Together at Christmas

Together at Christmas

Together at Christmas

Even at this very special time of year, children, families and staff at Great Ormond Street Hospital (GOSH) are confronted with new challenges every day.

Every day, 618 children and young people from across the UK arrive at GOSH.

Every day, doctors battle the most complex illnesses, and the brightest minds come together to achieve pioneering medical breakthroughs.

This extraordinary hospital has always depended on charitable support to give seriously ill children the chance of a better future.

At Christmas, time spent with the people you love is precious.

For Kelly, whose daughter, Grace, spent last Christmas at GOSH, this was true more than ever...

This is their story,
told by Grace's mum.

Meet Grace...

Last autumn, when Grace was at school, her teachers noticed that she was tired and kept falling asleep. I did wonder if starting school was too much for her but she had been doing long days at nursery to prepare.

For a child who has Down’s syndrome, Grace has always been really healthy. She gets colds and things but doesn’t have any heart problems. Grace was diagnosed with Down’s syndrome at birth as it wasn’t picked up during pregnancy.

One minute she [Grace] would be laughing and joking and the next she was flat out on the sofa.

Then Grace got a cold in October half term and she didn’t really fully recover. She was well enough to go back to school but was still sleeping lots and kept getting a temperature.

At the doctors, they thought it was a virus but antibiotics didn’t change anything. One minute she would be laughing and joking and the next she was flat out on the sofa.

One night, Grace had really bad night sweats so I took her to the doctors and insisted on a chest x-ray in case it was pneumonia. We were sent to A & E for the x-ray and we were there for hours – people were getting turned away because it was so busy.

And then suddenly we got fast tracked into a room and we were told Grace had leukaemia.

That moment was as horrific and as awful as you can imagine.

Transferred to GOSH

We still didn’t know what type of leukaemia Grace had and we were transferred to GOSH a few days later.

We learned that Grace had acute lymphoblastic leukaemia (ALL). It has a better outlook for children than others, but it was always going to be harder for Grace because she has Down’s syndrome.

The consultant explained that Grace would start a two-year treatment plan, including six weeks of intensive chemotherapy.

As her mum, it was difficult to come to terms with the reality that my daughter was so sick.

It was very overwhelming. We were incredibly worried about Grace.

I couldn’t believe it was happening and it didn’t feel real. As her mum, it was difficult to come to terms with the reality that my daughter was so sick. Grace had all her hair and was often in good spirits, it was hard to comprehend that she had cancer.

Treatment started straight away and those first six weeks over Christmas were the longest of my life.

Not that there’s ever a good time to get a diagnosis but it felt acutely sad at Christmas. It was heartbreaking to see everyone on social media enjoying the holidays and going to things like the Santa’s Grotto.

Nick and I swapped between the hospital with Grace and home with Grace's twin brother, Max. We were calling friends and family to tell them the terrible news. And we were trying to be parents to a little boy who was worried about his sister but also excited about Christmas.

The nurses were unbelievably good at supporting me by listening and being patient.

The emotions you go through as a family are hard to deal with. I get upset thinking about those tough days.

The nurses at GOSH were just amazing with me because I was a mess. Nick is emotionally stronger than me and manages to look at each problem as it comes. I was just having a meltdown.

The nurses were unbelievably good at supporting me by listening and being patient.

When we come to GOSH for treatment, the nurses are brilliant with her. They go over and above what they need to do in their role.

How can the world still be turning when my life has stopped...

Christmas at GOSH

In those first six weeks, there was a lot to take in.

I was given a booklet but I couldn’t read it. I wanted to process the information in my own time. Every day you find out something new and there’s the awful wait to learn whether it’s a high risk or low risk cancer.

Grace was classed as a low-risk cancer patient. I know you should be grateful for that but it didn’t matter to me – it was cancer.

On Christmas Eve, we went over to the parent accommodation so me, Nick and Max could be all together.

Grace needed the less invasive chemotherapy. I can’t imagine what the harsher chemotherapy is like because this has been hard enough. She got high temperatures and painful mouth ulcers and she couldn’t eat.

We spent Christmas Day in GOSH as Grace was too ill to go home, even for a day. GOSH gave us two nights in the parent accommodation. We were so grateful.

Looking back at the pictures, Grace was really sick at this point. Her hair was all gone she was very pale. Her immune system was really low - she could pick up anything and that would be very dangerous. The nurses kept saying for me to take a walk around the block but I just didn’t want to leave that room.

On Christmas Eve, we went over to the parent accommodation so me, Nick and Max could be all together. Nick went to Tesco and bought a bottle of wine for us so we could have a Christmas Eve drink together. Early in the morning we went back to the ward. We all put our Christmas jumpers on but trying to be jolly was heart-breaking. It makes me cry thinking about it.

We spent the day sitting in Grace’s cubicle. A couple of entertainers came in, which was nice for the twins. It was a really surreal day.

By Grace's brother, Max

By Grace's brother, Max

Home for Christmas

Two weeks after that Christmas, we were told we could leave and continue the chemotherapy at home if we were careful to keep Grace isolated.

It was the first time we had all been together for six weeks. The kids had a bubble bath together and we played music and sang and read books. It was the best.

By Grace's brother, Max

By Grace's brother, Max

That was followed by six months of isolation at home until Grace was finally well enough to go back to school in June.

Everything is going well and her chemotherapy is due to finish around her seventh birthday at the end of January.

I want Christmas this year to be massive but I’m also nervous about planning anything.

It’s not about presents, it’s about making memories together. We just want to make it as magical as we can for them.

I can never repay the hospital staff for looking after my girl.

I want to continue fundraising for the rest of my life to help other children like Grace.

We would be lost without the hospital...

With your support this Christmas, we could provide extra beds for mums and dads to stay on hospital wards so seriously ill children never have to be alone.

We could fund cutting-edge equipment and pioneering research to help save lives, and we could fund vital services that provide emotional and practical support for children and families affected by serious childhood illnesses.

With your support we can help even more families be together at Christmas.

You can help by sending a message of hope as part of our Stocking Appeal. You can also stock up on your Christmas essentials at our GOSH shop. Or you can simply donate.

By Grace's brother, Max

By Grace's brother, Max

Thank you.