Jack's Journey

Jack was diagnosed by the team at Bristol, and our treatment and investigations will go between there and Bath as part of their shared care scheme.  He will require a journey of further tests and a period of chemotherapy to shrink the tumour and hopefully prevent the LCH from returning.  

Jack was an IVF baby so it was a long fertility journey to falling pregnant and the embryo transfer was three days before the first lockdown. He’s amazing, in every way. He’s so loving and cheeky at the same time. He absolutely loves books and the bookshelf is the first place he goes to every morning. He’s very inquisitive and likes to work out how everything works.

At just six weeks old, he was hospitalised with a urine infection which has caused kidney scarring and reduced growth in one kidney as a result of urine flowing back into the kidney. He has to take medication daily for this, which he does without any complaints. And even since his LCH diagnosis, and throughout all the tests, he still smiles every day. He likes singing and dancing and loves going to the park, especially the swings. He’s very sociable and loves to give all the doctors and nurses a high-five - he just flashes his little smile and they are like putty in his hands. 

Only around 50 children in the UK develop LCH each year. It can affect children of any age, and is more common in boys than in girls. The condition occurs when Langerhans cells, part of the body’s immune system, build up and form tumours called granulomas, usually in a person’s bones. It’s a very rare condition and research is relatively underfunded compared to other cancer research.

That’s why we wanted to set up this fund, to raise money for research into this condition. To do so, Nick and I will be rowing, running or riding 3,618km – the equivalent distance from our home to Korvatunturi, in Lapland, Finland (the official home of Father Christmas). We will complete this challenge by Christmas Day 2022, and having started in December 2021, it gives us approximately a year to finish it and means completing around 10km per day.

We’ll also be looking at other ways to raise funds and support CCLG, and would like to raise at least £20,000 to help future research. Nick is a keen golfer, so is also looking at putting on a charity golf day at his local club, while Jack’s young cousins are also looking at doing a cycling challenge, too. Jack’s chemotherapy might last a year, so they’re aiming to do 365 miles in 365 days.

We’ve called the fund ‘Jack’s Journey’ because we’re aware that this is something that will not be over in a short period, and recognise that it’s something that we’ll make our way through as a family, with the support of our friends and others. The journey for us will be a tough one, but nothing compared to what Jack and other children with cancer will endure.

If you’re able to donate, anything at all, it will be massively appreciated by Jack, us, our family and parents in the future who have a child diagnosed with LCH. It will go a long way to helping understand more about LCH and how to treat it.

Please follow us on Instagram as we share Jack’s Journey.