Posted on Monday 18 November 2019

Ellen’s story – “Staying at a CLIC Sargent Home from Home meant we didn’t have the stress of finding money to cover travel costs”

Ellen was diagnosed with neuroblastoma in January 2018 when she was just two years old. Mum Claire explains the importance of being able to use a CLIC Sargent Home from Home when treatment took the family 40 miles away from home in Newry to Belfast.  

Ellen

Claire said: In August 2017 I was potty training Ellen and she was doing really well, but after a couple of weeks she suddenly seemed to be constipated. We took her to the GP who said that it was normal enough for young children who are potty training and it should work itself out. 

“This went on for a couple of months and during this time she had a couple of kidney infections too. Ellen started to become in a lot of pain so we took her to A&E. They still thought it was kidney infection so they gave her some antibiotics which seemed to do the job for a while. 

Before Christmas we took Ellen to the GP again as she didn’t seem right. They took some bloods and said that they wanted to do an ultrasound of her kidneys in one of the days between Christmas and New Year. The scan showed that there was a mass in Ellen’s tummy, but we then had to wait to be transferred to the children’s hospital in Belfast for an MRI on the 2nd January. Waiting over the New Year weekend was really hard – we didn’t know what was going on or what they were going to tell us. 

Once the results came back, they told us it was cancer. After that they had to take a biopsy of the tumour and bone marrow, which showed that it had spread to the bone marrow. The whole time we were hoping that they would come back and say that they were wrong and it wasn’t cancer, but every time the doctor came into the room the situation seemed worse. Eventually they told us that it was stage four, high risk neuroblastoma. 

“We were in total shock, it was a dreadful time. We went into complete autopilot mode for the next couple of weeks.”  

Ellen started chemotherapy in the second week of January, having treatment for three or four days at a time over a period of 70 days. Because she was so poorly, she had to stay in hospital for most of that time.  

Surgery, high dose chemotherapy, a stem cell transplant, radiotherapy, and immunotherapy followed.  

Throughout the ordeal, the family were able to stay at CLIC Sargent’s Belfast Home from Home, which took away some of the financial implications of having to travel back and forwards.   

Claire said: “Belfast is about 40 miles from home and it takes about an hour to get there if you’re lucky. The petrol cost is about £10 each time and then you have the stress of hospital car parking on top of that. 

“The Home from Home ended up being an absolute lifesaver. It meant that both me and Paddy could be there for Ellen. We’d stay on the ward until 10pm or so and then one of us would go back to the house and the other would stay with her, then we’d swap. 

“I don’t know how we would’ve managed otherwise. We used the house so much in the first six months after Ellen’s diagnosis – at one point she was an inpatient for four months. If we’d been travelling up and down that whole time I dread to think how much it would’ve cost. We just wouldn’t have been able to afford it.  

Ellen loved the home too, she’d get into her own little routine, playing with the toys she liked and watching the same movie. She knew she was safe there – no one was going to come at her with needles or take her for tests. 

“People at home have been so good to us too. The local community set up a fundraiser for us way back at the start. That’s meant we haven’t had to worry and we had that money available to pay the bills. We’ve both been off work since Ellen was diagnosed. Paddy tried to work at the start but he just couldn’t. Instantly your wages are cut and it can become really difficult for families. 

“Our CLIC Sargent Social Worker helped us with arranging different benefits we were entitled to, and also arranged for us to receive a £170 grant which was really useful for our finances not long after Ellen was first diagnosed. We feel so lucky to have had the support from our community and CLIC Sargent.” 

After Ellen’s immunotherapy and scans came back clear, she qualified for trial treatment in New York. In July 2019the family took their first trip to New York after raising money to fund the treatment. Over the next year they will make the journey four more times.  

Ellen’s family are backing CLIC Sargent’s call for a Young Cancer Patient Travel Fund. Sign your support to ask all party leaders to commit to the fund if they become the next Prime Minister.

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