Posted on Wednesday 4 September 2019
Nick’s story – “We did around 20,000 miles of car journeys in Isabel’s first year of treatment.”
Isabel was just three years old when she was diagnosed with leukaemia in May 2017. Dad Nick shares the impact of his daughter’s diagnosis, and the impact of travelling a 266-mile round trip to get to the nearest specialist hospital for life-saving treatment.
“When first getting the diagnosis, the first thing I thought was that Isabel was going to die.
For several weeks, Isabel started complaining of aching legs and being tired, and she had a persistent cough. We took her to the doctors and croup was the initial diagnosis. Later that week though, we noticed a horrible bruise on her back which was unexplained. We took her to the doctors again, and this time we saw a doctor who had experience working in paediatric oncology. He knew what it was straight away, and although he didn’t specifically say, he said we needed to go to Barnstaple hospital immediately.
That was the first time we heard the word leukaemia. Within a couple of hours we had a diagnosis of ALL confirmed and Isabel began blood transfusion and platelet transfusions. It was devastating.
I had suspected it was something quite serious as the bruise on her back was nothing like I had ever seen. I never expected a cancer diagnosis though. We knew it would be a long road of treatment – two years and three months – and the side effects and risks of treatment are as dangerous as the disease itself.
We live in Bude in Cornwall, which is three hours away from Bristol and a 266-mile round trip. Thankfully CLIC Sargent has a Home from Home in Bristol which gave us accommodation to stay in close to the hospital. This also allowed us to stay together as a family for three months during treatment. We would have spent a lot of money on accommodation in Bristol if the Home from Home wasn’t there.
After her initial two weeks at Bristol Children’s Hospital Isabel’s care was transferred to Royal Devon and Exeter Hospital which meant we could return home. We then needed to drive to Exeter each day for treatment which was a total of 90 miles there and back. We often had to do this four times a week.
It was tough. It was Isabel’s year of starting school. She did make it into school on her first day, but then had to miss various weeks for treatment in Bristol, and stays in hospital when she was unwell. She suffered from chemo sickness quite a lot, and suffered with fatigue.
She also missed the normal things a small girl likes doing such as swimming and soft play.
She gained weight really quickly when on steroid treatment, then lost it quite quickly again. She lost all her hair during the final intense part of treatment and also suffered from ulcers, sickness, and lots of temperature spikes which meant hospital stays.
We learned not to plan anything. Just take a day at a time. The logistics of getting to and from so many hospital appointments and the medication she needed didn’t really allow us to stop and think about things – which ultimately was probably a good thing.
I am self-employed – so while I could take time off for a lot of the hospital appointments and do overnight stays, it meant I wasn’t working. Our travel costs have been one of our biggest expenditures over those last two years. For six months we did more than 100 visits to the Royal Devon and Exeter Hospital, a 90-mile round trip just for her treatment. That doesn’t include the visits to the hospital when her temperature spiked or our trips to Bristol. We estimate we did around 20,000 miles of car journeys in Isabel’s first year of treatment.
We live in Bude in Cornwall, which is three hours away from Bristol and a 266-mile round trip. Thankfully CLIC Sargent has a Home from Home in Bristol which gave us accommodation to stay in close to the hospital. This also allowed us to stay together as a family."
Isabel’s school has been amazing. Her friends were only 4 and 5 at the time, but they really supported Isabel and looked after her when she was in school. Isabel’s chemo treatment finished last month on 18 August. We now move onto monthly check ups and keep our fingers crossed.
Cancer certainly put things into perspective. For two years and three months we haven’t gone too far away from Exeter in case Isabel’s temperature spikes and she needs antibiotics. We constantly worry about chicken pox and measles. With our other kids we always worry when they complain of aching legs or have a funny bruise.
The support of CLIC Sargent to our family has been immeasurable. We were first in contact with CLIC Sargent the evening of Isabel’s diagnosis. Jenny our CLIC Sargent nurse came in to see us. Our CLIC Sargent Social Worker Heather has helped us get the benefits we were entitled to, to help with the costs of the 90-mile daily travel during treatment and sort out parking permits.
Jenny visited every Monday for around 18 months to take Isabel’s blood for testing. This has saved us weekly trips to Exeter hospital and Isabel three months of school.
Bude is the place in the UK that is furthest from a main specialist treatment hospital. Isabel and the kids looked forward to seeing Jenny every Monday morning, and we miss her now Isabel has finished treatment! We call her our ‘Mary Poppins’ as it’s one of Isabel’s favourite movies. She came to help us in our time of need and has been a rock for us.
There should be more money put into research, specifically into children’s cancers and leukaemia and a fund to support families who have long distances to travel.
A travel fund would help so families and would prevent so many families getting into debt. Every parent will find the money to make sure their child can get to the hospital so they can get the treatment they need.”
Nick is taking on Deloitte’s Ride Across Britain on Saturday 7 September, and cycling 980 miles from Land’s End to John O’Groats to raise vital funds for CLIC Sargent this Childhood Cancer Awareness Month.
“I’m doing this bike ride to help raise funds for CLIC Sargent so they can continue to support children and families through the terrible diagnosis and treatment of cancer.”
To sponsor his incredible challenge, visit: https://www.justgiving.com/fundraising/nick-swan-clic-sargent
Donate this Childhood Cancer Awareness Month and help more families with the immediate costs of cancer.