This week, City Connect reports on a family from Norwich who was supported by the Sick Children’s Trust.
One afternoon last summer, our 15 year old daughter Jade complained of feeling unwell. Over the following days her face began to swell up and she developed a pain in her leg so I took her to our local doctors in Norwich where they immediately did blood tests. When the tests came back later that day they showed signs of leukaemia so we were blue-lighted in an ambulance to Addenbrooke’s Hospital in Cambridge, an hour and a away from our home.
My husband, Kevin, had to stay at home initially as we have two dependent parents to look after and needed to organise care for them, but I remained by Jade’s side until we arrived at the hospital. It was there on the ward that I learnt about The Sick Children’s Trust and the wonderful work Acorn House does.
We initially stayed at the house for 11 weeks whilst Jade was being treated for her illness before being moved to Bristol Children’s Hospital so she could undergo her bone marrow transplant.
When I arrived with Jade on the first day I just had the clothes on my back and not much else so being at the house and having access to the washing facilities and all the other amenities meant I didn’t have to worry about the little things like where I would wash my clothes or eat that night. All my energy could be focused on Jade and her getting better.
During this time Jade would often join us at the house and sit outside in the sunshine. It must have been a lot for her to take in, going from a normal healthy girl overnight to having to battle this awful disease, and I think that moments like this away from the ward helped her feel normal and behave like an average teenager.
Also, when Jade was undergoing chemotherapy she’d crave different foods which sometimes the facilities at the hospital couldn’t cater for, so whether it was chicken dippers or ice cream, it was nice to know I could pop down to the local shop and cook her favourite foods over at Acorn House. The joy we got from small things like this can’t be put into words.
Jade also took great comfort knowing that we were okay. She’d often worry about me and ask where I was sleeping at night so having the space at Acorn House really reassured her that mum and dad were coping fine. Also for me, having to sleep by the bedside really drained my energy and without a full night sleep it would have been hard to face the day ahead. Staying at Acorn House meant I woke rested and could face the day fresh.
In December 2010, after Jade’s transplant, we came back to Addenbrooke’s Hospital as it was renowned for its specialist care for Leukemia patients. We were then transferred back here under the watchful eye of hospital staff whilst she recovered and fortunately we were lucky enough to once more receive a room at Acorn House.
During this time there were lots of ups and downs as Jade battled through recovery, but thanks to Acorn House I could be by Jade’s side day and night. My husband would join us on the weekend as it was too far for him to travel and work every day, but even this meant we could have special family time away from the wards together. To help Jade’s recovery she would often come over to the house and hang out with me and her dad. We’d sit on the big, comfy sofas and watch DVDs and when friends would visit her, it’s so much nicer to be able to bring them to Acorn House than having to sit around Jade’s hospital bed.
Jade even came over and stayed the night at the house once or twice and I think this helped her recovery no end. Being away from the beeps and sounds of the ward in a room with her parents was the next best thing to being at home and gave her a real boost whenever she visited.
Being surrounded by families who are going through the same situation also helped me deal with the stress and I’ve made some great friends out of my time at the house – a positive out of a truly awful situation. There is one family in particular we speak to about twice a week, just to get updates and see how each other are doing.
The ward had to call me on a few occasions as Jade wanted her mum, and the relief that I could just put on my clothes and pop across the road to reassure her was immense. If I had had to travel all the way from Norwich to do that, I don’t think I would have been able to cope.
It’s been eight months now since Jade underwent her transplant and every day she is getting stronger. They say it takes 18 months until you are fully recovered so we do have a long road ahead but for now I am just happy that she is getting her strength back and she is at home with us.
We still have to visit Addenbrooke’s Hospital every two weeks as part of her post operative check ups and often call in on the house. It’s funny to think that even though we went through one of the worst times of our life here, we have such fond memories of our time spent at The Sick Children’s Trust. We spent 94 days there in total and I’ll always remember the support we received and be grateful for that.
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