CAN YOU GIVE £1 A DAY DURING CHILDHOOD CANCER AWARENESS MONTH TO HELP CHILDREN LIKE ELLEN?
“Our life was turned upside down in a moment. Everything we knew changed in an instant. I went in to work that day and Ellen had her ultrasound. I thought it would take ten minutes and she would be going home with my husband Paddy. That was it. I haven’t been back to work since.”
Little Ellen Treanor, from Newry Co. Down, was diagnosed with stage four neuroblastoma in January 2018. Her mum Claire is sharing their family’s experience of cancer to help raise awareness during Childhood Cancer Awareness Month and to raise vital funds to support Cancer Fund for Children. Claire was potty training Ellen who was just two and half years old when she started to suffer from constipation. She says,
“Ellen started off great with the potty training but then she got a bit constipated about two weeks into it. I took her to the doctor and they said this was very normal for a toddler. The doctor gave us some medicine but it didn’t really work. This went on for about three to four months. Then Ellen had a couple of bad kidney infections. The doctor said the kidney infections go hand in hand with the constipation. It was all very innocent.
The week running up to Christmas I rang the doctor as I was concerned and they advised me to get Ellen’s bloods taken. A couple of days after Christmas our GP rang me to say she wanted to redo Ellen’s bloods and have an ultrasound taken of her kidneys.
I work as a Radiographer so Paddy, Ellen’s Daddy, brought her in to me one day and the doctor scanned her. The doctor wasn’t happy with Ellen’s scan so she sent us to the children’s ward in Daisy Hill Hospital. From there we were sent to the Royal Belfast Hospital for Sick Children and on 2nd January 2018, just a week after Christmas, Ellen had an MRI and was diagnosed with stage 4 neuroblastoma. The following day she had surgery to fit her central line and a biopsy of her tumour. She was only 2 years old and 10 months.”
Claire says that normal family life as they knew it was completely upended,
“Everything you knew changed in an instant. I went in to work the day Ellen had her ultrasound. I thought it would take ten minutes and Ellen would be away home with her daddy. That was it. I haven’t been back to work since.
It was just terrible. Our whole family was separated. We were in the hospital with Ellen for the first few months as she was an inpatient a lot of the time. Our other kids were practically living with their grandparents. They were a great help and we were so relieved to know Ellen’s siblings were ok.”
Ellen had to have very intensive treatment which included: 80 days of chemotherapy, a 13 hour surgery after which she was in intensive care for a week, a course of high dose chemotherapy, followed by a stem cell transplant during which time she was in isolation for three weeks. After that she had three weeks of radiotherapy in the City Hospital, followed by six months of immunotherapy.
“Neuroblastoma is a type of cancer were the doctors just throw everything at it. There is a very high risk of relapse, about 50% of children
diagnosed with neuroblastoma relapse so they just seem to give them everything that they can.
Ellen was just so sick during her treatment. She didn’t have a huge amount of symptoms beforehand and she seems to have quite a high pain threshold. She just got on with it, but in those first few months she was really unwell. She kept getting infections between each round of chemo and she spent most of the time in hospital; perhaps coming home one or two days in between. But then she would get a temperature and have to go back into hospital for antibiotics.
She lost a lot of weight. She couldn’t really eat and had ulcers in her mouth. She had a lot of nose bleeds as her platelets were very low. Every day she would have to get an injection to try and boost her blood count between chemo. She really hated that and kept asking me ‘Mummy do I need to get a needle?’ It was just awful. She became very withdrawn and not really herself.”
It was whilst Ellen was having chemotherapy in the Royal Belfast Hospital for Sick Children that the family were introduced to Cancer Fund for Children’s Cancer Support Specialist, Gemma. We understand the devastating impact a cancer diagnosis and it’s treatment has on the whole family, and that beyond the essential medical care there is a family life that needs to be rebuilt. Our services include practical and emotional support as well as free therapeutic short breaks for the whole family.
“Gemma came into the ward one day and chatted to us. She also visited us at home. She told us about the charity’s therapeutic short
break facility Daisy Lodge, in Newcastle, Co. Down. We went for our first short break in April 2018 after Ellen had finished her 80 days of chemo. Everyone on the ward was telling us we were going to love it but we didn’t really know what to expect.
Our short break was just fabulous. Honest to goodness, it was the first time during that whole year since Ellen had been diagnosed that she enjoyed herself. She had such a good time. Everything was so clean and we didn’t have to worry about the risk of infection. For those first few months Ellen hadn’t been able to leave the house. If she wasn’t in hospital she was at home so to be able to go somewhere that was so well kept and so clean was amazing. She loved the food too and it was so good for her.
Daisy Lodge was such a haven. We had been through so much and had had such a horrible time leading up to our stay. We just ate and enjoyed relaxing massages. The scenery was beautiful. It was just such a nice break. It was lovely for Ellen’s sister Lucy, who is just one year older, to get to play. She was missing out on so much because we were stuck in the house. We left Daisy Lodge as a family feeling relaxed and ready to face whatever lay ahead.”
Ellen has just started P1 at St. Peter’s Primary School, Cloughreagh. She is currently having a vaccine trial in New York to reduce the risk of relapse and to help build an immunity to neuroblastoma. Claire is asking people to support Cancer Fund for Children during Childhood Cancer Awareness Month by donating £30, just £1 a day, to help other children like Ellen.
“Your life is a complete nightmare when your child is diagnosed with cancer. Everything is taken away from you. We had a holiday booked that we had to cancel. The girls really think they are going on their holidays when they are going to Daisy Lodge. They talk about it all the time still. It’s somewhere safe you can take the children during treatment and it’s a break from the stress of everyday life when you have a child with cancer.”
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During Childhood Cancer Awareness Month another 12 children in Northern Ireland will be diagnosed with cancer. Find out more about our services here.