Our childhood cancer story, 20 years later
Hi there! My names is Megan and some of you may already know me as the fundraiser who sits in the Arrowe Park House. I have worked for Ronald McDonald House Charities for four and a half years, for those of you who don’t know me, I hope by the end of this blog you will know a little bit about me and my journey to what I do today.
My story begins when I was only three years old, so I have asked my mum to help me tell it so that you can get a true reflection of my family’s journey. I’m sure most of you feel the same about your mum as I do, she is the best and I truly believe that if it wasn’t for her and the support of my family I wouldn’t be here today.
Rewind back to the 1990s……
‘Megan arrived very dramatically by emergency C section and was a very healthy baby. She would hardly sleep and soon became a very active toddler. She kept me fit and slim because she never walked anywhere! Her two older sisters were never late to school as we would have to chase after her each morning.
Megan’s illness crept up on us slowly. She had picked up a couple of bugs at playgroup and was slow to recover from them, needing some help from antibiotics. She then started to have an afternoon nap which was a welcome change. We just assumed that playgroup and all the running around was tiring her out, as her sleep pattern now matched all of the other children we knew. This meant I finally had a couple of hours well needed rest before collecting Megan's two sisters from school.
We then noticed she became very pale and even more sleepier with a pea shaped lump on her neck. A locum doctor, who we didn’t know at the time but had diagnosed another child a few weeks before, referred us to our local hospital about 40 minutes away from home on the 16th September 1993, where we were told that they would be waiting for us to arrive to run some blood tests.
The word Leukaemia was not mentioned to me before but was running around my brain and would not go away.
A doctor came in said;
"We have made a preliminary diagnosis but we will do some tests tomorrow including a lumbar puncture and bone marrow test to make sure"
"What are we talking here? Leukaemia?"
"Oh! Has someone already told you?" - My heart sank.
"No, it's just because of what you just said"
After the doctor left, I began to cry, to which Megan came over to give me a hug.
"Why are you crying mum?
"I have a bad back ....." not wanting to upset her.
"Can you take some medicine for it.?"
And that was the day my parents found out the worst news any parent can hear, their youngest of three children had cancer, on their wedding anniversary.
‘Megan’s treatment was part of a randomised trial. We initially weren't happy that she was a guinea pig in a trial but everyone got the same core treatment with either additional radiation or chemotherapy.
We were told that the treatment lasted 2 years with three years follow up before they could said she was cured. However she had to go to see the paediatrician until she was 18, but in Megan’s case was 19 as she had grown a bit attached to her paediatrician.
Those first few weeks were a blur, I had spent the first 10 days in an isolation ward, leaving the care of Megan’s sisters to their dad and their grandparents.
She had an allergic reaction to one of the drugs on about day 5, the doctors said.
"she is not in a coma but just hasn't woken up”. The next day her eyes were open but she was ‘not there’ unable to speak, just staring vacantly into space.
After a couple of days she suddenly spoke whilst staring at the Robby Coltrane telly advert for Persil "Well done Billy" she said. Relief washed over us, we were able now to hope that she would recover from this reaction, which she did. We didn't want her to have this drug again but were told they had to crack on as the disease is relentless and they would proceed with extreme caution as had never seen such a reaction before.
After those first 10 days straight that I had spent in the hospital I remember leaving and going to the butchers on the way home to the girls to get them something nice for their tea, where I found I suddenly couldn't speak, it was like the reality just hit, that there was a world outside the hospital and I had to try to be normal when my world had been turned upside down. I didn't know how to carry on, I pulled myself together and pointed at what I wanted and found my voice and said that I had been in hospital with my very sick daughter and somehow managed to buy some chops.
Going home, carrying on and pretending like everything was ok so that we didn’t worry Meg's sisters about how sick she really was, was so hard as we didn’t know at that point if the cancer would win and we would lose her.
One of my friends was fantastic by saving me from people asking "how are you" by collecting the girls from school. I was fine just as long as you didn't ask me if I was.
Meg’s treatment involved steroids, which altered her moods and also made her look puffy. She would be angry one minute and giggling the next, it was a roller-coaster. One of the other side effects of the treatment was hunger and the chemotherapy seemed to change her taste. Her cravings went from jam doughnuts to McDonald's chips which we were constantly having to rush out to get.
We were lucky to have the friendship of families going through a similar time from a small support group who with the help of Children In Need were able to arrange days out and an annual holiday, for all the families of children who were going through or had been through treatment for Leukaemia. These trips were wonderful and gave us an opportunity to be a normal family. This also gave the siblings a chance to chat and play together as there was nowhere in the hospital to facilitate this.
Meg’s sisters would visit her in hospital but it was hard for them, there wasn’t anything for them to do and when Meg had lost her hair, we had no escape from seeing how very sick she was, that and the Hickman line which hung from her chest, her curly wurly as she called it. On Christmas Eve after her diagnosis we didn't know until 3pm if Meg would be spending Christmas in hospital or not as her results from latest blood test weren’t great. We were lucky that she could come home with us that day and spend Christmas at home, but we were very aware that some of the families we had become friends with were not so lucky and would spend Christmas in hospital.
The survival rate for childhood Leukaemia has improved but sometimes the disease wins and the treatment fails, over the course of Meg’s treatment we attended the funerals of three children. The hardest bit of all was having to explain to Meg, a child under the age of five, that someone she had become friends with had gone. Somehow Meg managed to make things brighter by always having a smile on her face even if she wasn’t feeling a 100% and by finding new games to play with the hospital equipment or bubble wrap.
Trying to keep life normal for her sisters was very hard. On her elder sister's birthday I had made a birthday cake and had to rush home from haematology. I only had an hour to spare to ice it and get everything ready for her party. I missed the instruction where it said to put the icing in fridge before putting it on the cake ... That’s when the icing started to bubble and all of the little decorations slowly moved to the edge of the cake and dropped off like lemmings off a cliff. It was known as the cake from hell as it appeared to be alive, I had to put two skewers in it to hold the layers together. The children thought it was hilarious and decorated their faces with the molten chocolate. To this day I am still told that this was the best birthday cake I have ever made however I felt at the time that I had let Meg's big sister down because I hadn't had time to ice it sooner.
Trying to be a good mum to all your children when you have a very sick child is very tough, you run on empty. People would often say, thinking they were being helpful, "I don't know how you keep going I would be in a heap... " They had no idea that you have to just to keep going, day by day trying your best not just for the child you have in hospital but the ones you have at home too, feeling torn as to where you should be. You just go on, for you family, trying your best.’
I had always wanted to give back to all of those people who saved my life and supported my family though this difficult time and from a young child I wanted to be a doctor. It soon became apparent that I didn’t have the brains for that so I looked at others ways to give back and found my passion in fundraising.
The hospital where I received my treatment didn’t have any family accommodation so when I heard about Ronald McDonald House Charities, what they do and knowing how important it is to keep families together, I jumped at the chance to work for them. Being able to make someone’s days a little bit brighter in their time in need means a lot to me as I know first-hand what those little things mean for a family especially if siblings are involved as it is very difficult to be a family separated by distance.
In September 1998 my family received the best news, I was in full remission with no need for any more blood tests. So this September for childhood cancer awareness month I am celebrating 20 years of being cancer free!
Most of my memories from that time in my life are happy memories with my family. I don’t remember the sickness or feeling unwell, I do remember the worried faces and stress when my mum and dad ‘handed over’ or them rushing out to get me more doughnuts…. But most of all I remember being a family as and when it was possible to be one. My mum did her best in the worst circumstances and for what it’s worth and as hard as it was to achieve I was a happy child with cancer especially when I was with my sisters. So mum, I thank you for everything you did for me and my sisters and everything you still do for us! Xx P.S. dad you did good too ha ha xx