Finding out that our three year old daughter had a brain tumour was by complete chance. A month before she had pneumonia and was put on a clinical trial of antibiotics. When the trial came to an end we went to Sunderland Royal Hospital where we reported on how Sophie was doing. In the days leading up to that appointment, Sophie had been a bit out of sorts, was upset a lot and she was being randomly sick. We’d also noticed her walking had become strange. That was when everything snowballed. We were sent for an emergency scan and were soon at Newcastle’s Royal Victoria Infirmary being told that our daughter would need emergency surgery the next day to remove a large tumour.
That night Will and I were able to stay in a room on the ward as we tried to understand the completely unexpected news we had just been told. The following day, we had to give up the room as it was needed for a patient, plus after surgery Sophie would be going onto the paediatric intensive care unit where we couldn’t stay with her. This is where Crawford House came in which is run by The Sick Children’s Trust.
“In the chaos of Sophie’s diagnosis, we hadn’t even considered the practicalities of where we’d sleep, eat and wash while Sophie was in hospital.”
We went straight from the ward to Crawford House, where we were welcomed and told we’d have a place to stay for as long as we needed it. We were shown around the communal areas, laundry room and our own bedroom and were amazed that such a place even existed. In the chaos of Sophie’s diagnosis, we hadn’t even considered the practicalities of where we’d sleep, eat and wash while Sophie was in hospital.
Sophie was in surgery for around 12 hours that day, and Crawford House meant we had a private place to wait with our family. We were only a couple of minutes away so we could be there straight away when Sophie was finally out of surgery.
Sophie’s recovery after surgery was slow and difficult. She stayed in PICU for a total of 11 days. In the month following her first surgery, she had three more surgeries and a whole host of other problems which required emergency care. Through all this time, Crawford House meant we could be at her bedside in minutes as we took shifts to be with Sophie and get some much-needed rest away from the constant, overwhelming environment of intensive care.
When Sophie was finally well enough for ‘day release’ from hospital, we took her to Crawford House. For the first time in almost a month, away from the hospital, she relaxed and played, and we saw our daughter coming back from all she had been through. Without that opportunity, taking her home would have been much more daunting.
Crawford House was a lifeline for our family at the most difficult time. The staff were so welcoming and supportive, the facilities perfect for our needs and most importantly, it meant our family could be together any time at the most difficult time of our lives. Crawford House was indispensable to us.
“When Sophie was finally well enough for ‘day release’ from hospital, we took her to Crawford House. For the first time in almost a month, away from the hospital, she relaxed and played, and we saw our daughter coming back from all she had been through. Without that opportunity, taking her home would have been much more daunting.”
For those reasons, we have been fundraising ever since for The Sick Children’s Trust. In November 2019, Sophie’s Grandma Susan held a fundraising night, I have just held a facebook fundraiser which has raised £2,000 and Will’s colleagues have raised £600.
When your child is in intensive care, the last place you want to be is miles away from them. The Sick Children’s Trust gave us a place to sleep, wash and eat in shifts without having to be more than a few minutes away from Sophie. It gave us a safe haven during the most difficult time of our lives. There are families with seriously ill children at the RVI from all over the north, and without a place like Crawford House they face being apart from their child which is why now more than ever any penny raised is precious.
Laura Hope, Sophie’s mum
