Every day is a step closer to taking our little boy home...

On 17th December 2012 our baby boy, Noah was born 15 weeks premature at The Rosie Hospital in Cambridge and was sent straight to the Neonatal Intensive Care Unit (NICU). His early birth was such a shock to my husband, Dan and I. It was even harder to cope with as we had been monitoring my pregnancy really closely to prevent this from happening, due to us losing our first baby at 24 weeks in November 2011. We met Alan, the house manager of Chestnut House, the day after Noah was born and he told us about the ‘Home from Home’ accommodation The Sick Children’s Trust provides. In one conversation all our worries about accommodation were solved; we were able to stay in Chestnut House free of charge while Noah was in hospital. The house is located within The Rosie Hospital and is only a two minute walk away from the ward, which meant that we were never too far away from Noah and could always be there for him when he needed us. We live in Bedford which is an hour’s drive away, so without Chestnut House we would only have been able to visit the hospital once a day. Apart from the distance this would have put between us and Noah, it would also have been really expensive to travel back and forth every day. The Sick Children’s Trust was amazing and provided exactly what we needed. Noah was really tiny when he was born due to his premature birth, weighing just 2lb. Aside from his tiny weight, we were also told that he had a pulmonary haemorrhage on his lungs and an open duct in his heart. If this wasn’t terrifying enough, the doctors also told us that there were some issues surrounding his brain. We were distraught and so worried; we just kept thinking that Noah was too tiny to have all these possible conditions. Noah was in The Rosie Hospital for two weeks and we were able to stay at Chestnut House every night, which was a God send. It enabled us to get some rest, shower and cook proper meals, all the while knowing that if anything happened we could be with Noah in a matter of minutes. When Noah did grow to become a little stronger we were transferred to Lister Hospital in Stevenage; this really raised our hopes and we thought Noah was getting better. But then he developed a severe case of Necrotizing Enterocolitis (NEC) and we were rushed back to The Rosie Hospital. For a second time on 28th January this year, we were lucky enough to be welcomed back into Chestnut House. Being at the house gave us time with our baby. Without this, we would have only been able to manage a daily visit and would have missed out on so much of Noah’s early life. If we had been in the position that many others find themselves in, being far away, we wouldn’t have had the special moments where we were able to connect with Noah. The close proximity of Chestnut House to Noah’s ward was really important for me too. Because of the C-section I had with Noah I was told to rest, so being only a minute’s walk from his bedside was perfect for me. I remember one night going upstairs to say goodnight to Noah and he was really crying, for the first time ever, as he was nil by mouth at the time. The nurse suggested I hold him and comfort him to get him settled. Almost as soon as he heard and smelled me, he calmed down and dropped off to sleep. I was able to experience this very special moment because I was staying in Chestnut House and was only two minutes away from him; if I had been at home I almost definitely would have missed this moment. The timing of Noah’s birth meant that we spent Christmas and New Year in the house which was hard, but being able to have dinner and laugh together with other families made it feel a little bit more festive, even though we were all going through a difficult time. It was such a support to have other families in the house that we could talk to. We were able to share our hopes, fears and dreams for our little ones. Chestnut House really brings together a community of ‘shared experience,’ and it is reassuring to know that others are going through a similar journey to you and to know you are not the only ones. Our family could also come and visit, which was really important to us especially over Christmas. They could all visit Noah and it was really lovely that they could have a coffee with us in a quiet environment away from the busyness of the hospital. It was these little things in the house that made such a difference to us. Also, having Wi-Fi in the house meant that we could go on the internet and for us this was a way of coping as we started a blog that we wrote on every night. It became a diary for us both and was so therapeutic. We cannot thank the staff at Chestnut House enough. Alan’s support and understanding during this difficult time is something that we wouldn’t trade for the world. He has such a wonderful way of making you laugh one minute but then to listen sensitively to the difficulties going on for you and your family in another. Noah is currently at Bedford Hospital. He is improving every day and although life has changed dramatically for us and it’s not exactly how we planned it, every day is a step closer to taking our little boy home. Chestnut House and the staff have definitely made our journey a lot easier to manage and we cannot thank The Sick Children’s Trust enough. Jen, Noah’s Mum

Crawford House has been there for us twice now.

In August 2011, my wife Gemma was having a few problems in her pregnancy and on 18 August 2011 we went to our Hospital (Durham) as we had several times, just expecting Gemma to be examined and be sent home again. When we got to the hospital a doctor examined Gemma and quickly ran to get a senior doctor, leaving the midwife to explain to us that Gemma was in labour and the baby was on its way. Gemma was only 25 weeks pregnant! We were very quickly rushed to the Royal Victoria Infirmary (RVI) in Newcastle. When we arrived the doctors explained to us that because our son was so premature he would spend a long time in Special Care Baby Unit (SCBU), probably until his actual due date. It was such an emotional time, we did not know what we were going to do. Our baby would have to stay in the RVI and we live almost an hour’s drive away. I was shown around SCBU and was told about Crawford House, a place where we could stay while our baby was in hospital. It was such a relief to know that we could stay so close to our little boy. Benjamin was born four days later on 22 August 2011 at 2:10am at only 25 weeks 5 days gestation (almost 15 weeks premature) weighing only 1lb 12oz. He was transferred to SCBU to be ventilated and put on life support. Gemma was discharged two days later and luckily we were informed that there was a room at Crawford House for us. Crawford House is located in the hospital grounds, only 5 minutes walk away from the ward. Gail showed us around the house, and it was more than we had expected. Staying at Crawford House allowed us to be close to Benjamin 24 hours a day. We stayed there for 79 days until Benjamin was well enough to be transferred to our local hospital. Gemma stayed at Crawford House every night, but I had to work so I had to come home for three days a week. It was always a relief coming back to Crawford House every Friday night; with my wife and son there it always felt like I was coming home. We would spend all day on the ward with Benjamin and come back to Crawford House to eat and sleep. I remember two occasions in particular, once when Benjamin needed help with his breathing and we stayed with him on the ward until very late, and once after we thought things were improving and Benjamin was getting better, he took a turn for the worse and needed to be resuscitated and put back on the ventilator and life support. The hospital phoned us in our room and updated us on Benjamin during the night. When things were so tough it was a great comfort knowing that there was somewhere close we could go for some peace and quiet or a lie down when we were just so exhausted. We spent every waking moment on the ward, and we would not have been able to do that had Crawford house not being there for us to rest and recharge. When we had visitors it was nice coming back to Crawford House for a cuppa after spending hours on the ward. We also found it helpful being around families that were going though a similar situation to us. It was nice going back to Crawford House and speaking with other families; it gave us a sense that we weren’t alone in our situation. We made some good friends at Crawford House. Benjamin came home a happy healthy baby two days before his actual due date, spending a total of 99 days in hospital. A few months after Benjamin came home, even after everything we had been through, we decided to try for another baby and we were soon pregnant with our second child. Gemma had a pretty good and problem free pregnancy until one day she started to have the same symptoms she had had when she was pregnant with Benjamin. We knew what was coming so Gemma rushed to hospital on 10 September while I stayed at home with Benjamin. Gemma was immediately admitted onto the ward. She was told that there was only a small chance of delivering early, but they still wanted her to stay in hospital overnight. During the night Gemma’s symptoms got worse and our worst fears were realised, she was in labour and baby number two was on his way. Gemma was only 24 weeks pregnant. Jacob was born very quickly the next morning, 12th September 2012 at 12:58, 16 weeks early, weighing a tiny 1lb 9oz. We knew what kind of journey we were going to have. In some ways that knowledge made it easier, but we knew it would be harder this time as Benjamin was only 13 months old. Jacob was transferred to the RVI that evening, and it was comforting to know that if Crawford House had a room we could stay there and be close to Jacob just like we had been for Benjamin. Once Jacob had been transferred to the RVI Gemma spent another night in Durham hospital. During the night she had had a call from the RVI saying Jacob needed a blood transfusion (the first of many). We were desperate to get to the hospital to see him and so the next morning when Gemma was discharged from hospital and we all went straight to the RVI to see Jacob. Gemma phoned Gail at Crawford House explaining our situation and she remembered us from the previous year. When we arrived Gail was more than welcoming; she allowed us to use Crawford House facilities to give Benjamin his lunch and gave us a room straight away. We were very grateful for this as otherwise we could not have spent the day at the hospital with Benjamin, it meant one of us could stay at Crawford House with Benjamin and one of us could be on the ward with Jacob. Being able to stay at Crawford House this time around was even more important as we had Benjamin. He loved playing in the play room and watching DVD’s in the living room. As with any 13 month old, he did not like sitting in the hospital with us for very long, so we would take it in turns being at Crawford House with him. This time around we could not stay together at Crawford House every night as Benjamin missed being at home after a few nights. Luckily I did not have to go into work much while Jacob was in hospital, so we would stay in Crawford House together for at least 2-3 nights of the week and for the rest of the week Gemma and I took turns to be at Crawford House or at home. When Jacob was a few weeks old he needed heart surgery and he needed to be transferred to the Freeman Hospital at the other side of Newcastle for this. Jacob was to be transferred to the hospital at 7.30am. The night before, Gemma and I stayed at Crawford House, leaving Benjamin with a friend for the night, so we could go to the Freeman Hospital with Jacob. It would have been very difficult for us to get to the hospital that early in the morning if we were not staying at Crawford House. Jacob’s time in hospital was a little tougher than Benjamin’s. Jacob was on a ventilator for seven weeks and had quite a few ups and downs in that time. We stayed at Crawford House until Jacob was ready to come home (108 days) on 30th December 2012 which was 2 days before his due date. Five months after Jacob’s birth we are home as a family enjoying each and every day. We do have a few appointments at Newcastle and on those days Crawford House are happy to allow us to use their kitchen to feed our boys. We cannot thank The Sick Children’s Trust and Crawford House enough. Having a room and somewhere we could go for 5 minutes to escape from the hospital was invaluable to us. We also became friendly with Jennie and it was nice to be able to go to Crawford house and have a little chat. We and our boys will be forever grateful to all the staff. By Michael and Gemma Oliver, Benjamin and Jacob’s parents

I gave birth to identical twin girls at Wolverhampton hospital....

On 2 December 2012 at just 25 weeks pregnant I gave birth to identical twin girls at Wolverhampton hospital - Angel Stewart who was 1lb13 ounces and Maisy Stewart, who was 1lb 3 ounces. Sadly our baby Angel passed away shortly after birth. This was the start of Maisy’s long journey to get home. On 11 December Maisy was transferred to the Rosie Maternity Hospital in Cambridge as it was the closest specialised hospital to us. It was here that my partner, Sean, and I were told about Chestnut House, a ‘Home from Home’ facility that provides free accommodation to the families of sick babies being treated at the hospital. The room was just downstairs from the Neonatal Intensive Care Unit and I was so pleased to be able to stay there as we were still in shock from the birth of our girls and losing Angel that neither Sean nor myself could not bear the thought of leaving Maisy. The morning after we had arrived Alan Booth Chestnut House Manager showed us around Chestnut House. It was great to know there is a friendly face around if we need anything or have any questions.

We could not face speaking to anyone after what we had been through but living in the house with others around us who are also in the same situation made it a lot easier to start talking about our journey’s together. We found some great friendships in the house that I’m sure will continue when we return home. It’s now the start of February and we have now been in Chestnut House for eight weeks. We feel so privileged to be staying so close to Maisy for her time in hospital. We have been able to spend more time with her than we could ever imagine with than if we were commuting from our home in North London. It is great to be able to go upstairs any time of the day but also to be able to come back to the house and have some normality, especially when we have visitors up, to sit and have a cup of tea in the living room as if we were at home is lovely. Maisy still has a long journey home ahead but thanks to Alan and The Sick Children’s Trust we have had somewhere safe, friendly and homely to stay and will be forever grateful for your kindness and hard work. Kirsty and Sean, Maisy’s parents

When our son Dylan was diagnosed with an infection of the bloodstream we were devestated...

In September 2011 our son Dylan was taken to Sheffield Children’s Hospital. He was diagnosed with an infection of the bloodstream, Streptococcal A septicemia. With Dylan being only four years old at the time of diagnosis, we were devastated. We spent all our time by his bedside and didn’t want to leave, we could think of nothing else but his recovery, we didn’t eat or sleep the whole time Dylan was in the intensive care unit. We are from Chesterfield so we wouldn’t have been able to travel the distance everyday. He remained in the intensive care unit for 11 days. When Dylan began to recover, we were able to leave his bedside and were informed about The Sick Children’s Trust and the accommodation that they provide. We immediately put our names down and were offered a room at Treetop House. It was great, not only could we stay close to Dylan but our daughter Ellie Mae, only aged two at the time, could also stay with us. Dylan and Ellie are really close, so it meant a lot that we could all stay together and be close to Dylan. With the accommodation being situated on the top floor of the hospital, we could shower, sleep and eat proper meals again. We also had the comfort of knowing that while we were away from the ward, we had a direct line to Dylan’s bedside as well as being only one lift ride away from him. The accommodation The Sick Children’s Trust provided was incredibly helpful. It was a weight off our minds in practical terms as we knew that we wouldn’t have been able to travel home to Chesterfield everyday. It was also really supportive emotionally as it was good to talk to other parents and families who were going through a similar journey as us. Also, the staff at Treetop House were amazing, they were so caring and were always there as a shoulder to cry on when we needed them. We cannot thank The Sick Children’s Trust enough for all they have done for us. Dylan has now recovered really well and we are so pleased. He is enjoying and doing well at school and also has become a keen swimmer. He is so happy and is always smiling. As much as we would like to forget Dylan’s hospital stay and the time we spent in Sheffield Children’s Hospital, we will never forget and will always appreciate the accommodation The Sick Children’s Trust provides. Colleen Beer, Dylan’s Mum

Lola was born on 7 July 2012 and it was the happiest day of my life...

We were lucky enough to stay in The Sick Children’s Trust’s Eckersley House for four weeks last July when our daughter, Lola, was born with Gastroschisis – a condition which affects 1 in 5000 unborn babies. Lola was born on 7 July 2012 and it was the happiest day of my life, but that happiness soon turned to panic when we were told by the doctors that because of her condition and her bowels being on the outside of her body she would require urgent care – she was booked in to undergo surgery the next day to try and repair her bowels. Lola was our primary concern but at that point we also had to face the issue of where we could stay. Our home was in Huddersfield and neither myself nor my partner, Michael, wanted to leave her side. That was when one of the midwives at Leeds General Infirmary told me about The Sick Children’s Trust’s ‘Home from Home’ Eckersley House. She kindly spoke to the house manager, Jane, and arranged everything. Having this respite just across from the hospital helped Lola and I to bond when she was born. As a first time mum I was worried that we might not be able to establish a strong relationship, but thanks to the close location of Eckersley House I could be there with Lola all the time. I genuinely believe that having Michael and I around also helped her recovery. The doctors had told me Lola would have to stay in 6-12 weeks but amazingly she was allowed home after just 4 weeks. The Sick Children’s Trust helped me more than words can say. I was so scared that I wouldn’t have money to travel every day and that I might miss the beginning of her life. But because of this amazing charity I could go and see her whenever I liked, which put my mind at rest. Two days before Lola was discharged she was allowed out of the hospital for the day and I took her to Eckersley House. All we did was sit down and relax, and for the first time we felt like a proper family. All the staff there were so helpful and I can’t thank them enough for allowing me to be with my daughter. Paige Wood, Lola’s mum.

My story begins at the end of May 2012...

My story begins at the end of May 2012 when my daughter Victoria complained about a pain in her arm. I looked at her arm to discover a lump at the top just below her shoulder and immediately packed her off to accident and emergency in Scarborough. We waited for what seemed like ages to be seen by a doctor who ordered an x-ray. Vicky had the x-ray done and we once again waited. At the time I didn’t think too much other than that she had probably injured herself somehow. The doctor called us in and said he was a bit concerned and that we would have to see a specialist, but in another area and some distance away from home. One week later we got a phone call from Birmingham Royal Orthopaedic Hospital with an appointment early the following week. They also stated she would have to have a biopsy done. Alarm bells were now starting to ring and I remember saying to my partner, Janet, that I thought it was a tumour. We packed ourselves off to the hospital at Birmingham and Vicky had her biopsy done. I was okay until on the second day the Macmillan nurse visited us and more or less confirmed my worst fears, that they were almost 100% positive that my daughter had bone cancer. I went through so many emotions; fear, anger, sadness… I even began blaming myself, but I was told this was quite normal in these circumstances. The results returned and did in fact confirm she had osteosarcoma (bone cancer). The appointment for Leeds General Infirmary arrived very fast, and we attended to be told that my daughter would need a very long course of chemotherapy and an operation back at Birmingham to remove the tumour. My first thought was how were we going to manage this with living 60+ miles away from the hospital, since we could not afford to travel back and forth. Then I was told about Eckersley House which was run by The Sick Children’s Trust, and how they provided a ‘Home from Home’ for parents like me. When we arrived at the hospital I enquired about Eckersley House and was shown where the accommodation was. I rang the doorbell and was immediately greeted by a member of staff who had the most wonderful smile on her face and immediately made me feel at home. She said the house was full, but if a room became available she would get in touch with the ward. A few hours later I got a message to return to the house as a room had become available. I was welcomed and shown around the house, which is truly a ‘Home from Home’ and has everything you could ever wish for. We are still going through the treatment six months later and I am still staying at Eckersley House. So this is my story; similar to many of the other families that stay here. I have met some wonderful families during my stay and also some wonderful staff who continue to put up with my sad days as well as my good days and are always there to help me through bad times. I thank the charity from the bottom of my heart. Without their help and support my family and I would be totally lost. The accommodation is a godsend to us; it means my partner can stay and I don’t have to go through this on my own. The staff are fantastic, always there for me if I need a shoulder to cry on and without them I would not find this distressing journey quite as bearable. They take a bit of the worry away because I know I can be close to my daughter if she needs me. Steven Waters, Vicky’s dad.

Our son's fight for his life...

In 2008, if it wasn’t for The Sick Children’s Trust’s and their ‘Home from Home’ Eckersley House, we wouldn’t have been able to stay with our son throughout his fight for life. Robbie, our little miracle, was born more than three months early, weighing just 2lbs and 7ozs, very suddenly at home in our bathroom. We called the ambulance service who arrived very quickly and took Robbie and me to Scarborough Hospital. My very shocked husband, Anthony, met us at the hospital and once Robbie had been stabilised and put on a life support machine we were rushed to St James’ Hospital in Leeds. This is where I was introduced to The Sick Children’s Trust’s Eckersley House who at this time had a ‘Home from Home’ there which provided free accommodation to families of sick children. The house has since been relocated to provide support to families of children from the Leeds General Infirmary The staff at the house were fantastic and the fact that they could offer us a room on the hospital site was invaluable and gave us the ability to stay with our very poorly little boy. After a three and a half month stay in hospital with many ups and downs including a nerve wrecking surgical procedure, Robbie finally came home, still weighing less than 5lbs. As a family we will always be indebted to all the people and services who helped get our little boy where he is today. Robbie is a happy, healthy four year old who lights up our lives every minute of every day. The Sick Children’s Trust played a massive part in our story, allowing us to be close to Robbie and provide support and comfort at both him, and each other at a critical time. Denise, Robbie’s mum

Only 1 in 3,500 babies our born with our daughter's illness...

Our daughter Lily was born in August with Tracheo Oesophageal Fistula and Oesophageal Atresia - a condition which is rare in the UK with only 1 in 3,500 babies born with it. The condition meant her oesophagus joined her windpipe instead of going to her stomach. Lily was rushed from Colchester hospital to the Rosie hospital immediately after she was born as she needed emergency surgery. Lily’s operation was a double fistula which we were told was quite rare, so we were very nervous about the outcome, but the neonatal surgical team managed to remove the fistulas from the trachea and join the two ends of the oesophagus. The result was positive but meant she could only feed through a tube through her nose into her stomach. On top of this her condition means her windpipe isn’t strong so it keeps collapsing and she finds it difficult or is unable to breathe at times. When we arrived at the Rosie hospital we initially stayed in hospital parental accommodation but this wasn’t ideal and we were relieved when we were told about The Sick Children’s Trust, a charity that provides free accommodation to the parents of sick children whilst they are being treated in hospital. We stayed at its Acorn House for two weeks from the 28 August. We were then transferred back to Colchester hospital for a month before returning back to Cambridge where we stayed once more with The Sick Children’s Trust. This time we were able to stay at their new ‘Home from Home’ Chestnut House, which caters specifically for parents such as us who have a very sick baby. We stayed at the house from the 1 to the 9 October and it was a godsend for us. It’s an incredibly stressful experience to have a baby in hospital. To then have the added stress of being away from home was very difficult. As a new mother you are continually told to look after yourself, eat well and get sleep, but this is practically impossible living in a hospital. Being given the room at The Sick Children’s Trust’s Chestnut House for that week meant we had the facilities to cook a proper meal and have a comfortable bed to sleep in whilst still being only minutes away from the neonatal intensive care unit – this was a massive relief and eased some of the anxiety we were feeling. Having the opportunity to speak to other parents in a similar situation sometimes was a help too, but we also had the option of just locking ourselves in our room for some peace and quiet at the end of a difficult day. I couldn’t bear being away from Lily but at the same time it was important for us to step out of her hospital room and get some rest time away from the NICU wards. We have since been back and forth between Colchester and Cambridge numerous times. We were finally discharged from Colchester hospital on 6 November so our dream came true and Lily has been at home with us for a couple of weeks now. We will have to go back to Addenbrooke’s Hospital every month for the foreseeable future for Lily to have her dilatation. At least it will only be for a few days and Lily can be at home with us in between. We know now about the wonderful charity, The Sick Children’s Trust, and we know that should we need to call on them again during these visits we can. Jessica Moore, Lily’s mum

Acorn House was like a haven for us.

On 6 September of this year, our family was very unfortunate to be involved in a serious car accident caused by a foreign lorry driver driving on the wrong side of the road. Our 6 year old daughter Ella was in the car at the time and thankfully suffered just minor cuts and bruises, but our youngest daughter Maisie who is 15 months old was also in the vehicle and sustained serious injuries, including several fractures to her skull causing damage to her brain and several fractures to her left leg. We were initially transferred to The Royal London Hospital from the scene of the accident, but it was Addenbrooke’s Hospital in Cambridge that was to become our home for the following month. It was whilst Maisie was being cared for in the Paediatric Intensive Care Unit at Addenbrooke’s Hospital that we were made aware of The Sick Children's Trust and the facilities they provide to families who find themselves in similar situations to ourselves. Within a few hours of Maisie being transferred into the Intensive Care Unit (ICU), the Ward Clerk had arranged for us to be introduced to Joy the House Manager of Acorn House. Joy confirmed that she was in a position to offer us a room at Acorn House for the duration of Maisie's stay in the ICU, which was such a relief for us knowing that we could stay so close to our daughter as home for us is Colchester, which is at least an hour's drive from the hospital. Acorn House was like a haven for us. We could not believe that we were able to stay in such a beautiful house and use all the facilities and be so close to Maisie. We were able to call from our room directly to the phone at Maisie's bedside at any time of day or night, which we did frequently, especially for reassurance that Maisie was ok if we had had to leave her side for any reason. We were able to have our other daughters Melissa, aged nine and Ella, aged six come and stay with us whenever they liked. They were able to play in the house itself and the garden. We also had several family meals together at Acorn House, including other family members and friends who had come to visit Maisie. This was so important to us as it was very hard to be apart from our other daughters and caused a real strain on us as a family, but to be able to be together whenever we could and enjoy a sense of 'normal life' playing and eating and spending family time in an environment which felt so similar to home was very comforting. It really did make our time at the Hospital so much more bearable and The Sick Children’s Trust’s intention of creating a 'Home from Home' environment is in our view exactly what it is. Our time at Acorn House was also made easier by the wonderful hospitality we received not only from Joy the House Manger, but Julie and Jane who also work at Acorn House. At a very difficult time for our family they were there for us with complete understanding and compassion, for which we were very grateful. Whilst staying at the house we also had the opportunity to meet other families staying there. Although our circumstances were not necessarily the same, we had a common bond and spending time with them and sharing our stories and feelings certainly had a positive impact on our experience at the House. We spent the best part of a month at Addenbrooke’s Hospital with Maisie, but we are now home. She is regaining her skills and progressing well and we are confident that in time she will make a full recovery. We were extremely pleased that just before Maisie was discharged from hospital we were able to take her to play at Acorn House and introduce her to the other families that we had met. This really meant a lot to us as it had been our home for the duration of Maisie's stay in hospital and we wanted to share it with her. Obviously this has been a very traumatic experience for our family and we have been through a very difficult time, but in relation to Acorn House itself and the families and staff we have met, we have very fond memories and we really do have The Sick Children's Trust to thank for that, for which we are extremely grateful. Nicola Moon, Maisie’s mum

My daughter Rachel is the only person in the UK, as far as I know, to have a papillary tumour of the pineal gland. She is one of only about 40 people in the world (the others are mainly from Asia) believed to have this type of brain tumour. For Rachel to have recovered as she has done from this extremely rare condition is nothing short of a miracle, and we put a lot of that down to the fact that I was able to be with her 24 hours a day in the hospital, thanks to The Sick Children’s Trust’s Home from Home accommodation. Rachel had been a perfectly fit, normal, healthy 12-year-old girl when on 21 September 2011 she was sent home from school with a severe headache. When I went to get her she was walking like a drunk. We went straight to the doctor who sent us to see a neurologist at the local hospital in Bramley, South Yorkshire. She had a C.T. scan and that’s when we found out she had a massive brain tumour. Rachel was transferred to Sheffield Children’s Hospital and had emergency surgery at 8am the following morning. It was a nightmare. I felt like someone had pulled the rug out from under me. Rachel had only been back at school two weeks after the summer holidays. At the end of August we had been on a family narrow boat holiday with some friends and then Rachel went on to Suffolk on a camping trip. To go from that, and going back to school, to being at death’s door was horrendous. The whole family was devastated – Rachel also has a twin brother Jordan. For the first couple of nights I slept on a chair by her bed. I had heard from someone on the ward that the charity, The Sick Children’s Trust, offered free accommodation in the hospital to the families of sick children. There was a waiting list to stay at Treetop House, but a few days later, on 26 September I was offered a room. I was very lucky I didn’t have to wait too long. I stayed until Rachel was discharged two months later on 28 November. Unfortunately, I wasn’t so lucky when she was re-admitted in December for a week of radiotherapy treatment - there was no room available and I only had a chair by her bed. I didn’t go home. It was really hard, and I barely slept the whole time, but it reminded me of how much I had appreciated being at Treetop House during her previous stay. Until you are in that position you can’t believe how much the little things mean to you. To get up in the morning and have a shower is something most of us do every day, so when you can’t do that it is awful. In Treetop House you have got all those facilities that you take for granted at home. I could shower and wash my clothes, I could pop up and make a cup of tea if I wanted to, and make something nice to eat in the kitchen rather than rely on hospital food. It was also wonderful to know there was a place where I could retreat to for half-an-hour or so when Rachel was asleep. And it gave me peace of mind knowing the nurses could call me in my room or in the lounge and I could be back on the ward in a couple of minutes. I live in Bramley, about 20 miles from the hospital, and I use public transport, so it could have taken me about an hour and a half to get back from home. I believe it also helped Rachel’s recovery immensely, both psychologically and practically, to know that I was always in the hospital. If she needed the bathroom or help to eat I could do that. After one of the surgeries she was left paralysed. She couldn’t sit up unaided and couldn’t get her hand to her mouth. For me to be fully involved in her care, and to ask questions it was much easier being on site with her. I have absolutely no idea how I would have coped if Treetop House had not been there. In the 68 days of her first hospital stay I went home twice. In those two months, Rachel endured eight neurosurgery operations. She developed hydrocephalus, due to the tumour preventing water draining from her brain, and also suffered headaches, nausea and vomiting. It was debilitating for her, but she was so brave. She never complained and was an absolute treasure. Mum and dad would come and wait with me in Treetop House when Rachel was in surgery – one operation lasted nearly 13 hours. It was good to get away from the ward and the waiting room and go somewhere private where we could cry together as a family – we never knew if she was coming back or not. I had a couple of nights when the medical staff said, “you had better not go to sleep upstairs tonight”, which puts into context how ill she was. My son Jordan stayed with me for a couple of nights. It was so nice for us to be together as a family. He found it hard to be at the hospital, to see his sister the way she was, so it was good for him to be able to go to my room. I could get him something to eat and we could sit and watch television. Jordan stayed with family friends while Rachel was in hospital, so that he could continue to go to school, and they would bring him up to see us during the week. As far as we are aware, there is not another person in the UK who has Rachel’s type of brain tumour. There is nobody I can talk to who can say, “I have had that” or, “we have got through that” or, “we didn’t get through that”. I have joined a couple of forums online but nobody has quite the same thing. But it really helped staying in Treetop House, because even though the other parents had children with very different medical issues, they were going through the same emotions and feelings that I was going through. It was great to sit and chat with them, often over a meal. There were two people in particular with whom I have kept in touch and we have become friends. Treetop House manager Ann and her deputies Nichola and Rachel were also really helpful and supportive. It was so nice to be able to go to them for a chat. Rachel was allowed to visit Treetop House in a wheelchair in the last couple of weeks she was there. She loved my room and it was great for her to get away from the ward. She is back at home now and has finished her treatment but she needs an MRI scan every three months. Surgeons removed 95 per cent of the tumour and she has had intensive head and spinal radiotherapy to kill off the rest. It would appear on the initial post treatment scan that the tumour has all gone, which is very encouraging, but they won’t say for sure until a few more scans down the road. We are now watching and waiting to see how much she will improve. The tumour caused damage and the radiotherapy caused further damage, which has raised new problems. But Rachel is amazing. She has gone back to school for two afternoons a week and we are hoping to increase that. We have had so much support from Rachel’s school - she is in Year 8 at Wickersley School near Rotherham – which has been fundraising for us. We have a plan that once she has finished her treatment we want a nice holiday. Rachel would really like to go to Australia – how feasible that will be I have no idea. It won’t be until at least next year as she is not allowed to fly yet. We also want to raise money for charities, including The Sick Children’s Trust. Her school friend Lydia handmade 200 Christmas cards, which we sold through local coffee shops, and raised £100 for the charity. They both handed over the money to the staff at Treetop House, which was brilliant. I am a paramedic but I haven’t been to work since September. My work colleagues have also been fundraising for The Sick Children’s Trust. The charity is amazing and it was a privilege for me and my family to have stayed in one of their Homes from Home. Beverley Hirst, Rachel’s mum