Just before Christmas last year I was asked to don a Santa outfit by Red at The Grail café. With some trepidation I walked downstairs into a beautifully prepared ‘grotto’ where a room full of expectant children sat with their eyes agog. I’d never done this sort of thing before, so broke the ice with a question about what the kids were getting for Christmas. Quick as a flash a cross-legged boy at the front of crowd said “I’m getting a train. I love trains.”
After the event I asked Red who this little chap was, as he’d really brightened up my day. “That’s Rufus” she said. “He’s been really poorly.” This started a string of events that led me to meeting Rufus, his baby brother Noah and his parents Rosie and Tom at their house. Hopefully this piece will help in some small way towards their fundraising efforts and raising the profile of the disease (and its symptoms) that almost cost Rufus his precious young life.
So Rosie, tell me a bit about your lovely family. So there is just the four of us: Tom, me, Rufus and Noah. We’re all very close and love doing everything together.
Well you guys sound and look like a very typical young family, but I know that life changed very suddenly for you last year? Yes - in February 2017, Rufus was suddenly diagnosed with acute lymphoblastic Leukaemia just after turning three. It was a devastating shock, as our seemingly healthy and thriving toddler didn’t seem as though his body was being taken over by something this serious. An unusual rash flared up one day and he saw a GP who unfortunately didn’t spot the signs of Leukaemia. To be on the safe side we insisted on a blood test at A&E which instantly confirmed cancer of the blood. The way life changed after his diagnosis led us to decide to move closer to my parents who live here, for physical and emotional support.
It’s a scary thought, but it sounds like your mother’s instinct saved Rufus’ life? Tom says the same. I was just unsatisfied with an inconclusive reason for this peculiar rash he had developed, and for the rest of the day it bugged me and I have to admit I googled it. What I found sent alarm bells ringing so we just had to have an answer that day, but of course there’s no way we were expecting Leukaemia. It’s insane what life can do to you in the space of 12 hours.
How has Rufus coped with everything and what treatment has he still got ahead of him? Like an absolute trooper! His resilience and courage has astounded everyone he’s met. Not just physically but mentally too. It takes something like this for children to set an example for their parents. It has been disturbing for us all to witness so many changes in Rufus; from hair loss and losing the ability to walk to phases of depression and sadness caused by high dose steroids. All so surreal and unnatural for such a small person. Last year he underwent seven months of intense chemotherapy, including some surgery. He’s gone through so much distress and pain, but we are proud to see that his experiences have done their bit to shape the strong personality that he is and he channels his energy into positive things. He has two years of treatment left, which consists of daily oral chemo, steroids, monthly infusions and bi-monthly lumbar punctures which prevent cancer cells from coming back in his spine or brain. He has settled in to a new “normal” though and we believe Noah being born played a huge part in his recovery.
Well he’s clearly a tough little cookie but how has all of this affected you and Tom? As I mentioned before, seeing our son lose his character because of the way drugs emotionally manipulate him, and lose control of his body, was dreadful. As well as the simple knowledge of knowing that cancer is happening to YOUR child and unwillingly questioning their mortality at times. It has been so testing. It has 100% changed who we are; our life before this seems like a dream now. Our values and views are different and outlook on life has become simplified, we enjoy the small things and now feel grateful for everyday situations and make an effort not to sweat the small stuff anymore! It takes a lot of energy but these days we think more positively about Rufus’s prognosis as we feel there’s no other option of thinking.
Now I know the charity Latch have been a massive support to you? LATCH have been our lifeline since moving to Wales. As soon as we met their support staff they put their arms around us and gave us security and encouragement, as we felt a bit like fish out of water after the move. They’ve offered us financial support, which at times is crucial, and they always have accommodation ready above the ward for Hospital stays so both of us can be there for Rufus. They treat all the children under their care to toys, entertainment and trips away, and also parents. They know how exhausting it can be for us too; they have organised reflexology for us before and also sessions with a psychiatrist. We are so grateful that this June we are going on a holiday to Tenby courtesy of LATCH! They are always there on the other end of the phone with advice, and go the extra mile every time.
And now you guys are hoping to do something for them with a bit of fundraising? Tom: Well in July myself and some friends and family will be conquering the mighty Three Peak Challenge in 24hours. Starting at Ben Nevis in Scotland, then Scafell Pike in the Lake District and finishing at Snowden. It’s going to be tough, but I was determined to do something that people would see as a real challenge and a worthwhile fundraiser. Something they could get behind, follow the progress of and even help us out themselves. Already we’ve got a few local businesses helping with sponsorship and we’ll have family meeting us at the finish line; Rufus will be there too!
When Rufus is fully recovered, do you think you’ll stay in Aberystwyth and if so, what do you like about it? Yes we intend to! We love the environment here - it’s a place of natural beauty that is such a novelty to us! We never imagined living by the sea and now we do we can’t imagine it any other way! It’s a lovely town to raise children in and make memories together. We can’t wait to take advantage of the beaches and countryside this summer. Also I think Rufus would be gutted if we moved away from all the steam trains...
Finally, I seem to be surrounded by trains. The boy’s obsessed right?! Yes he’s infatuated with trains and Thomas in particular! It’s been his passion since he was 1, other crazes have come and gone but it looks like trains are here to stay! The aim is to take him to ride every steam train in Wales...
Since writing this piece I’ve spoken to Debbie Morgan who is the marketing manager of the Vale of Rheidol Railway and when I told her about Rufus’ story and his love of trains, she very kindly offered the family a complimentary family ticket. Tom and Rosie please get in touch after you read this and I’ll put you in touch with Debbie.
I also got in touch with LATCH and below is a little bit more information about what they do. But first, this is what they had to say about the Palmers and their fundraising efforts:
“Receiving the news that your child has cancer comes as a terrible blow, and LATCH exists to help the entire family when they most need it. Our home-from-home accommodation allows families such as the Palmers to stay on site, close to each other, ensuring families can concentrate on treatment. And our support doesn’t end there – from providing grants for travel, heating and medical equipment to entertainment, holidays and emotional support, we provide a much-needed support service for families across Wales. We’re so grateful to the family for their inspiring fundraising and awareness-raising and can’t wait to see how the challenge goes!”
Katie Thomas, LATCH Social Worker.
LATCH supports the children and their families who are being treated by the Oncology Unit at the Children’s Hospital of Wales, a catchment area that stretches from Chepstow in the south to Aberystwyth in the north. Around 70 new cases are diagnosed every year in this area alone.
When a child has been diagnosed with cancer or leukaemia, treatment can last from six months to three years depending on the type. Follow up treatment and check-ups mean that a child who has been diagnosed with cancer will be under medical supervision for over five years.
LATCH has touched the lives of so many families throughout Wales. Since many travel huge distances, travel costs alone can be a huge burden, and it’s the ability to be near children during such an emotional time that makes all the difference.
LATCH funds the purchase of medical equipment and a range of clinical projects aimed at making the lives of children more comfortable on the wards and ensuring they are getting the best clinical support when they are at home and in the community.
Caring for a child during treatment is hard on all the family. Finances are often a worry as parents will have to take time off work to support their child. Family relationships can suffer too, as the emotional pressure takes its toll and everyday life is turned upside down.
LATCH Support includes:
- On-site family accommodation
- Three dedicated Social Workers
- Financial support through various grants
- Emotional support for parents
- Emotional support for brothers and sisters
- Holiday grants or stays in LATCH’s three caravans
- Benefits Advice
- Family Support Workers and much more!
Donate to Latch here:- http://www.latchwales.org/how-you-can-help/donate-to-latch/ For further information on the charity, please visit www.latchwales.org