It was a relief to know we were never far away

Earlier this year, Sophie donated part of her liver to her daughter Patricia. Here she shares her experience of stay at two of our 'Homes from Home'

Patricia was a happy and healthy baby, until she was around three months old when we noticed her stomach was becoming swollen. My husband, Andrew, and I are first-time parents and we weren’t sure if this was normal so I mentioned it to the health visitor during a regular monthly check-up. From there everything happened quite quickly. We were referred to Sheffield Children’s Hospital for tests which revealed that Patricia had a tumour in half of her liver.

Patricia was admitted to hospital at the beginning of January and began undergoing chemotherapy to shrink the tumour. Her condition deteriorated so quickly that Andrew and I made the decision to have our daughter christened at the hospital. Just hours later, Patricia was rushed to the intensive care unit as all the pressure of the tumour was on her lungs. She couldn’t breathe and had started to turn blue. She was put on a ventilator, which became her lifeline for a week.

It was when Patricia was on the ventilator that we were told that we could stay at Magnolia House, which is run by The Sick Children’s Trust. Before this Andrew and I had been sleeping in the hospital ward with Patricia, but this isn’t an option when your child is on the intensive care unit. It was such a relief for us both that we wouldn’t have to be more than a few minutes away from Patricia while she was so poorly.

Neither of us realised how badly we had been sleeping until we moved into Magnolia House. In the hospital you’re surrounded by the noises of machines and other families. It doesn’t really stop. Sleeping in the comfortable beds at Magnolia House helped us to keep our strength and energy up to support Patricia throughout her treatment.

Patricia stayed in Sheffield Children’s Hospital for five weeks, but after she was discharged her doctors decided that the best course of action for Patricia was a full liver transplant to reduce the chance of the tumour growing back. She was put on an emergency donor list at Leeds Children’s Hospital at the beginning of March, this year, to try and find a liver donor as soon as possible. This meant that we would also have to stay in Leeds as it’s too far to travel from our home in Sheffield every day.

“It was such a relief for us both that we wouldn’t have to be more than a few minutes away from Patricia while she was so poorly.”

Andrew and I didn’t know that The Sick Children’s Trust had ‘Homes from Home’ in different cities, so initially we were staying in a hotel in Leeds but we weren’t sure how we were going to finance this long-term. After a couple of days, we were told about Eckersley House and that there was a room available for us. It was lovely to stay somewhere that already felt familiar from our time in Sheffield as all the ‘Homes from Home’ are decorated in a similar way.

As the days turned into weeks, it became apparent that there was no suitable liver for our little girl. We were even told that a suitable liver had been found, then Patricia was taken into theatre and the operation was suddenly cancelled because the liver turned out to be damaged. The nurses rang the direct line to our room in Eckersley House to let us know, so we could go straight over there while she came round from the anaesthetic.

Throughout all of this, I was going through the testing process to see if I could be a living donor for Patricia. We had been told that if she didn’t get a liver within a few weeks, she would need further chemotherapy to prevent the tumour from growing. Andrew and I were worried for her as our seven month old was going through so much more than most.

Around a week after our cancelled operation, I was given the all clear to donate part of my liver to Patricia. This meant that I had to leave her with Andrew at Leeds Children’s Hospital while I went to have my operation at St James Hospital. On 26 March, I was put under anaesthetic at 6am and then part of my liver was transferred over to Leeds Children’s Hospital to be given to Patricia. Her operation began a couple of hours after mine.

Afterwards, all I wanted was to be reunited with her and Andrew.

While Patricia was in the intensive care unit after her operation, and I was in St James, Andrew stayed at Eckersley House. As I was still recovering, he had to do most of the caring for Patricia at first. Eckersley House meant that he could easily nip back in the day to rest, wash and have some time to himself to process everything that was happening.

When I was well enough to leave hospital, I joined Andrew at Eckersley House and continued my recovery there, which meant we could be back together as a family sooner. Andrew enjoys cooking and the kitchen in Eckersley meant he could still do this and we could share meals together! Being able to have these homely routines made a big difference to us both.

After a few weeks and a slow but steady recovery from our operations, Patricia and I were finally able to roll the marble down Leeds Children’s Hospital liver and renal transplant celebration wall, which marks that you’ve successfully made it through the treatment. It was an amazing feeling!

Patricia had her last round of chemotherapy on the 26 April and a few months later we had the fantastic news that she no longer had any cancerous cells and will need no further treatment. We were able to ring the bell on 17 July and now we’re enjoying spending time together at home.

Andrew and I are both so grateful to The Sick Children’s Trust and its ‘Homes from Home’. In total we stayed for around five weeks and it was a huge weight off our minds to know that we had somewhere to go back to, especially when I was recovering from my operation.

Sophie Barr, Patricia’s mum

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