Josie & Ruby…the role CLIC play

Our thanks go to Josie who has shared her story below with us to share with you all to illustrate the important role CLIC Sargent play.

 

This time last year, Ruby and I were set to come to the Devon Dub Fest, but our circumstances changed and we were unable to make. This year, Ruby couldn’t be more excited and that is thanks, in a big way to CLIC Sargent. This is our story.

Ruby was a very active healthy little girl, always running about, climbing and swimming. Then in February 2011 she fractured her wrist. Six weeks later she did it again in another part of the wrist. She was referred to Branch House, a mobility assessment centre. Between February and September she suffered six fractures, including her elbow and her ankle, all from innocuous incidents. She went from a girl who ran everywhere and loved climbing to not being able to walk at all. She had to use a wheelchair.

I was spending my life in A&E, seeing the physio and the GP. By November 2011 she was in a wheelchair permanently.

I took her in to A&E when she developed a pain in her arm and for the first time we saw a consultant who diagnosed Ruby with polyarticular juvenile arthritis. We were then sent up to Bristol Children’s Hospital and they took a test of her bone marrow and diagnosed her with leukaemia. At that point they believed she had had it since February. If they’d not discovered it she would only have had weeks to live.

It was awful, absolutely dreadful.

When they said it was cancer I became aggressive and said “Don’t you ever use that word again”. You just don’t know anything about the disease or its prospects. You just think it leads to death. I thought I’m dealing with the imminent death of my child.

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Everything was a blur. We were taken to a ward and I slept beside her on a pull-out bed. A lady from CLIC Sargent came along and gave us information packs, things to read and some money towards travel expenses. She also told us about the home from home in Bristol. That meant Ruby’s brother could come up to stay. We left on 15 December, not sure if the treatment worked. We thought it might be our last Christmas together.

I don’t know what I’d have done without CLIC Sargent. What was most inspiring is that CLIC Sargent is there not just for the child but for the whole family. My dad was with me at the hospital and he’s deaf. The CLIC Sargent nurse held him by both hands and told him calmly looking straight at his face. He’s from the generation where anyone that had leukaemia would have died.

CLIC Sargent’s support had a knock on effect even in the early days, and helped build the strength of the whole family. We came back to Exeter and had an appointment at the hospital. A CLIC Sargent social worker, Heather Rake, came to our house and she was a listening ear offering practical help. Ruby’s last fracture came after her leg gave way as she was getting out of bed. It was a mid-rise bed so we had to replace it. Heather got me a grant and said “go and sort out a bed.” At the time, that was worth a million pounds to me.

CLIC Sargent has been more than a crutch. It’s more like that poem about footsteps in the sand and I liken them to that. They don’t make you feel stupid, even if you ask the same questions a million times.

Ruby has coped with everything tremendously. She is such a positive and inspirational little girl. She was seven when she started having the slips and trips and spent her eighth birthday in a wheelchair. She never once made a connection between cancer and death, for her it was like a bad case of flu and she knew medicine would make her better.

She is such an inspiration. She couldn’t go to school for a year but has managed to pass her 11+. Her brother has also had a lot to cope with, he has been through the mill and back. But we’re a very positive, forward-thinking family. The only time I got cross was with the GP because it took so long to find out what was wrong, but CLIC Sargent has explained how rare it is that GPs come face to face with a child with cancer. The chances are slim. It’s still a rare illness. When we were on the ward we were in a bubble. All the children around you have cancer but it’s not like that in the real world.

Ruby has a condition called avascular necrosis, which is a crumbling of the joints. But she’sRuby 1 walking now and doing what the other children do. Her hair has grown back and she’s delighted she’s going to be able to go swimming again now she’s had her Hickman line removed. Heather is still supporting us. Ruby is now in remission and it’s highly unlikely it will come back but we keep our fingers crossed that everything will work out. I know I’m not on my own; CLIC Sargent has helped me throughout everything.

It was difficult when she was looking so unwell but we knew we’d get to the other side because of the help from CLIC Sargent. The best advice they gave to Ruby was to not allow cancer to define her. They said you will be a regular child again.

I was diagnosed with breast cancer last year and started my chemotherapy in June last year. I had a double mastectomy on January 15 which happened to be the last day of Ruby’s treatment, after two years and three months.

CLIC Sargent isn’t officially involved with me but their support with Ruby has helped me. It’s been hard for Ruby with her only parent being so poorly and her knowing what I was going through as she’d already been through it herself.Ruby 2

I’m still recovering from my operation and my hair is growing back. I probably would have reacted differently if Ruby hadn’t already gone through it. But she inspired me. If this had been my first experience of cancer maybe it would have been different. But even when I was diagnosed I didn’t shed a tear. How could I when I’d just seen what my eight-year-old had been through?

As a family, we’ve always liked VWs. The year Ruby was diagnosed we happened to see an advert to hire a VW campervan. We decided to do the coast of Cornwall. We’d never been camping before but we just hit the open road, stopping off where we felt fit. That was the best holiday. We were able to repeat it the following year after a company in Okehampton were able to provide a van free of charge. This year, we are so excited to be coming along to the Devon Dub Fest and seeing everyone who supports CLIC Sargent and loves campervans!