Monday, 31 October 2011
Our time at Treetop House by Marie Boden, Jayden’s mum
Our son Jayden was born in Rotherham in November 2010 with cystic fibrosis. Further testing with an X-ray revealed that he had a blockage in his bowels, so he was transferred immediately to Sheffield Children’s Hospital and at only five days old he had to have an operation.
After this everything seemed to be okay, but then he started losing weight rapidly and at the start of February 2011 we had to take him back to hospital for a week to undergo tests. He was released for the weekend and we were hopeful that he had turned a corner but then he took a turn for the worse and was readmitted for more tests. We were on the ward for two weeks before the doctors told me it would be a long term stay. It was at this appointment that the consultant mentioned The Sick Children’s Trust and its ‘Homes from Home’, as it became clear that this time we were going to be in hospital for quite a while.
Before we got a room at Treetop House we were travelling back and forth from our home in Rotherham, which was half an hour each way, and with neither myself nor my partner being able to drive, we had to use public transport. This isn’t ideal when you have a sick child and every second counts. We just wanted to be close to Jayden all the time.
The first week Jayden was on the ward, when we didn’t have anywhere to stay, we were going back and forth to do our washing. We were just rushing into our home, tidying and putting a quick wash on with enough to keep us going for a few days before going straight back to the hospital. Eating out was also proving expensive. We didn’t want to stay at home and make meals as being by Jayden’s side was our priority, so we would grab a quick snack from the hospital canteen just to keep us going. All these little things added to the stress of what we were already going through, but once we found accommodation at Treetop House these were no longer an issue. It’s these little touches that make such a difference.
Staying at the house not only helped us to physically stay close to Jayden but also mentally gave us peace of mind. When we were staying there we used the phones in the rooms to keep in touch with the ward and would often call down just to check on his progress and make sure he was doing okay.
In the last few weeks Jayden also came and stayed with us in the house and although he is too young to take advantage of the play room or even watch TV, I can’t tell you how wonderful it felt to be like a normal family. As Jayden got ill pretty much straight away after he was born, we haven’t had the chance to do “normal” family things like cook a meal together or just sit in the room and play with toys. The Sick Children’s Trust provided us with a place to do that and really helped us all bond together as a family – I think spending this type of quality time together also helped Jayden to recover quicker, as it is so much better being close to one another. I am sure having us around and being away from the wards gave him strength to get through his illness quicker.
My mum and dad also came for a visit as they were desperate to meet their first grandchild. It was so just so lovely to be able to sit in the lounge at the house and relax with a cup of tea and talk to mum and dad and let them sit and cuddle Jayden without all the noises of the ward going on in the background. As well as having our own family around us, meeting other families also helped as it was reassuring to know we were all going through the same situation. We could draw on each other’s strengths and support each other through the good times and the bad.
We’d never been to Sheffield before and coming from Rotherham was quite disorientating. The house managers were wonderful in helping us adjust to our new situation and letting us know where all the shops were, which we would never have had time to find on our own.
We have just left the house and are going home for the first time which is very exciting for us. We will have to come back every week for a check up for the rest of Jayden’s life but thankfully it should only be for a day visit. I can’t thank The Sick Children’s Trust enough for its support during this time.
Wednesday, 12 October 2011
From Gibraltar to London
The Wilson Family
My family first stayed at Stevenson House in August 2010 for three months when our 11year old son Jack was diagnosed with a tumour in his pituitary gland. We later found out this was part of Cushing’s disease - a rare and difficult condition to diagnose.
When our hospital in Gibraltar confirmed that we would have to have him transferred to the UK to undergo tests we didn’t know how we would manage and as we also had two other young sons to consider the panic set in at an early stage.
Thankfully though, through searching online and with a little guidance from a kind member of Jack's clinical team we were told about The Sick Children’s Trust’s Stevenson House, so my wife Lynn and my boys Sheigh, nine, and Ellis, seven, had a new temporary ‘Home from Home’.
Staying at the house helped in many ways. First of all I could not work and look after my other two children. Instead of my wife being confined to a hotel room with two small boys, the home provided a warm and friendly atmosphere which helped to take away the feeling of being alone in a large city.
The house was very near to the Royal London Children’s Hospital, making what would have been a long trip back and forth to the hospital more manageable. The facilities at Stevenson House also helped, as we sometimes found ourselves having to cook a meal at 11pm at night so knowing that we didn’t have to seek out a late night restaurant to find some food was a reassurance. Just eating at the house was a breath of fresh air that broke up the monotony of the hospital.
Meal times were an essential part of our daily routine and crucial in giving our other two children stability. Being able to store our own comfort foods helped my children to keep their mind off of their brother and keep a modicum of normality. Financially it was a weight off our mind at a time where so much was in the balance.
It was also comforting for Jack to know I was only just around the corner. We promised him a trip in the wheelchair once he got out of the Intensive Care Unit (ICU) and the smile on his face when he had his first home cooked meal can't be put into words.
When Jack knew he had to stay in hospital on his own he was reassured that he had a direct telephone line to our room in the house. During the weeks of ICU that link became more vital as my wife and I rotated shifts around him whilst managing two other small children.
We made many friends in the house and it was comforting that others around us could understand what we were going through. Our children also befriended other children during our stay which relieved their boredom and also helped them through a difficult time, taking their mind off what their brother was going through. They loved playing in the house as there was plenty for them to do and they went through most of the video collection! Jack came over to the house too and was allowed to stay for the day of Halloween. We managed to buy some pumpkins and scoop them out and put them in the window; memories like that last a lifetime.
Having Sheigh and Ellis stay with us at Stevenson House was essential. We had decided before we came to the UK that we were in this together as a family and it would have destroyed us if they hadn't been allowed to stay. We are a very close unit and we do most things together. They were also old enough to know what was going on and I know they wouldn't have forgiven us if we hadn't taken them.
The Stevenson House staff were helpful in so many ways that may seem trivial to others but to us they were a god send. For example, just highlighting points of interest in the area or explaining where the nearest park was for our sons, sharing helpful tips on transport and generally making us feel at home so we didn't feel isolated. It meant so much for the staff not only to be interested but also concerned; their enthusiasm and compassion were to be applauded.
Jack has improved dramatically now and is back to school and although he is medication dependant, we are positive about the future. Recovery is a long process but he is looking forward to his next trip to the UK in September and in his own words he said "I never thought I would ever tell you I was looking forward to going back there." To me that shows how much he has moved forward.
We have stayed at The Sick Children’s Trust twice more since our initial visit last year. As someone that lives 2000 miles away it almost brings me to tears when I think how easy this charity made my most difficult time, especially as we knew how busy the house was. The Sick Children’s Trust showed all the qualities which you would expect from a professional organisation and I cannot thank them enough.
By Neil Wilson, Jack’s dad
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