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Madison Curtis

written by

Leukaemia Care, Charity

  • Andrew Buckle

Our daughter Madison was diagnosed with acute lymphoblastic leukaemia (ALL) when she was two and a half years old. Prior to Madison's diagnosis she complained of leg pains which we just put down to age and not wanting to walk. Bruises also appeared which happened to be in the usual place where children bruise, on the shins and legs, and she had also been getting a lot of colds but we thought nothing of it.

One night, Madison had a high temperature. She was red hot on the outside but was shivering. I automatically checked her for a rash and I noticed two very tiny reddish purple dots on her chest. Had I not gone to look for them, I probably wouldn't have noticed. Immediately I thought meningitis. I called her dad, Gary, who said we need to get to A&E. We were not prepared to wait a whole night for a GP appointment so we rushed to Barnet General A&E where we were lucky to be seen quickly.

The doctor had a look at Madison who had more tiny red dots appear and the original two on her chest had turned into bruises. The doctor also told us her liver felt swollen. The doctor took some bloods, gave her a strong antibiotic and kept us in whilst we waited for the blood results. Being the positive people that we are, we were not worried. A few hours later, the doctor asked us both to sit down as the blood results were back; he was 99.9% sure that Madison had leukaemia. I still cannot explain the feelings we felt during those few moments. Our close friends a few years previous had lost their nephew to leukaemia and the man I worked for as a mortgage adviser lost his boy to leukaemia too and I wondered if the same would happen to us.

We broke down. I still remember the nurse's face on reception that night. She looked really sad for us. I phoned my mum and she sobbed on the phone. Gary rang his dad and he said: "Stay strong son, you must keep her active, always" and that is what we did.

We were told that we would have to go to Great Ormond Street Hospital (GOSH) the next morning in an ambulance for a bone marrow test by way of a lumbar puncture to determine what type of leukaemia Madison had. One type was a 50/50 survival rate and another was an 80% survival rate, these figures made it so much worse. After the longest two hours of waiting for results, we were told she had ALL - the type that had 80% survival rate. This was a slight relief.

The same day, Madison started chemotherapy at GOSH. We were given a folder which had a 96-week plan of all the chemotherapy, steroids and treatments that Madison would be on. There are no words to describe how we felt, other than pure exhaustion and sadness.

Madison stayed in hospital for about three weeks, having CT scans and all sorts of tests. Seeing children with no hair and tubes in their bodies was very daunting. We knew we had this to come. Madison lost her hair within a couple of weeks and she was grouchy from the steroids. In total, she had around 50 lumbar punctures and was in a lot of pain, yet she never complained once. I know it's a cliché but she was a fighter. Madison knew she was poorly but she thought all children had horrible medicine and we told her she lost her hair because she wasn't eating her vegetables.

We came across Leukaemia CARE who offered us support in lots of ways. However, at the time we just wanted to shut ourselves away from everything as we wanted to avoid the reality of what was happening. However, we were reassured that they were they if we ever needed us, which was such a comfort at a time when there was so much to take in.

After the first intense block of treatment, we took Madison to Old McDonald's Farm in Brentwood. I always knew animals were therapeutic, but this just proved it. It was the first time Madison had wanted to get out of her pushchair and she walked halfway around the park admiring the animals. It was so lovely to see.

From that day, we went for walks and Gary got her a little children's treadmill and exercise bike to strengthen her weak little legs. After the visit to the farm, we made it a weekly outing. The owners, Joe and Cindy Manning, were so kind to us. They even donated a baby donkey to Madison, which we kept at the farm for obvious reasons! She named her 'Donkey Donkey'.

After seeing how much Madison enjoyed the farm, it gave Gary an idea. He wanted to build a sterile playbarn for children with cancer and low immune systems. Gary and his two friend's, Phil and John, launched The Playbarn Project which is now a registered charity. To date the project has raised approximately £250,000. However, rather than build just one playbarn, we have now decided to continue to fundraise and build multiple projects around Hertfordshire and London. We are building a new playroom at GOSH and we have donated over £100,000 to Noah's Ark Children's Hospice (in memory of the friends we have unfortunately lost along the way) so they can build a playbarn there. We have many projects in the pipeline and it goes to show that sometimes, a lot of good can come out of something bad.

Madison is now three and a half years in remission and has check ups every four months which will gradually be yearly over the next couple of years. She will also have to have regular heart scans for life. She is doing so well at school and swims, horse rides, dances, and is learning to ski she has no fear! It's as if she knows you only get one shot in life and you have to take advantage of it while you can. Madison never asks questions about her illness and we have no intention of telling her the seriousness of it until she is in her teens when we will need her to be aware of any changes in her body.

Madison (now 8) is doing her own sponsored event for The Playbarn Project, which will involve a 2-mile jog, followed by a 400-metre swim and ending with a 3.5-mile bike ride. Her sponsorship page is www.justgiving.com/Madisoncj.

If we were to give anyone any advice, we would say always go with your gut instinct - you know your own child better than anyone. Keep active, eat well and stay positive. Should anyone like to donate to The Playbarn Project, you can visit the website at www.theplaybarnproject.co.uk.