Preston couple fundraising to help son battle rare form of cancer

The Willett family outside The Christie towards the end of Jacob's radiotherapy course — The Willett family outside The Christie towards the end of Jacob’s radiotherapy course

A Preston couple are fundraising to help their baby son’s battle against a rare form of cancer.

Jacob Willett, who is 22 months old, was diagnosed with pelvic embryonal rhabdomyosarcoma in March.

In response to the cancer diagnosis, Jacob’s parents Mark and Ness Willett went on a fundraising drive to help support others in a similar position. They had raised £14,000 by the end of May for the Royal Manchester Children’s Hospital (Ward 84) and Ronald McDonald House Manchester.

However, a change in the direction of Jacob’s treatment has meant the couple’s fundraising efforts have had to start all over again.

Jacob’s Dad Mark Willett explained: “Jacob was approved to travel to Florida for NHS-funded proton beam therapy in May, but the treatment was cancelled the day before we were due to fly out. We were sat in the kitchen waiting for our taxi to the airport when we got the phone call from our consultant at the Royal Manchester Children’s Hospital.

“Jacob had been undergoing chemotherapy, and after four rounds of treatment he had a scan to see how the tumour was responding. We were all expecting a good response but the scan showed a 20% growth instead of any shrinkage. Everyone was shocked, including our consultant, who then explained that our treatment in Florida had to be cancelled as the tumour was now too big.”

Immediately after the cancellation, the couple began to fundraise again in the hope of funding the costly proton beam therapy themselves.

Jacob Willett before treatment started — Jacob before his treatment started

Mark said: “After the tremendous response to the first round of fundraising it felt like we’d probably exhausted the generosity of our family and friends, and so we really didn’t want to ask them all again. Ness and I even discussed downsizing our house. Although we really didn’t want to disrupt Jacob’s life in the only home he’d ever known, it just felt like we had no other option.”

Despite the couple’s concerns, a #jacobsjoin? crowdfunding initiative raised just over £4,000 in its first four weeks.

However, in another unexpected change, Mark and Ness found out soon after that proton beam therapy was unlikely to be an option at all. With surgery also being ruled out due to the size and delicate location of the tumour, a course of radiotherapy treatment at The Christie was the only real option left.

The couple then asked their donors if the money raised so far could be redirected to help them live in a hotel near The Christie for the duration of Jacob’s radiotherapy treatment. All the donors agreed, and the fund has since grown to over £12,000.

More fundraising is planned, with an End of Summer Ball taking place on Friday 28 September at Preston North End FC. The event, which is already sold out, includes a three-course meal, live entertainment and a raffle and auction. Mark and Ness are still gathering interesting items and experiences to offer as prizes, and would welcome any offers of sponsorship from local companies.

To say it’s been a difficult time for the couple would be a huge understatement. Jacob’s problems started while Ness was in hospital having a second full mastectomy as part of her treatment for pre-invasive breast cancer. She had been diagnosed soon after finding a lump during the couple’s honeymoon in Italy.

The amount of money raised says much about their positivity and determination, and is also a testament to Jacob himself.

Jacob being examined before one of his scans at the Children’s Hospital

Mark said: “During the past months we’ve had some really tough times. When one of us is down the other is usually up, which helps keep us going, and we have to do that for Jacob. If we do both struggle then we have our family’s support. We’re doing okay right now, but when the proton beam therapy was ruled out for Jacob it was a big shock.

“We can wake up some mornings and forget all about it, but then Jacob’s temperature will suddenly spike or he’ll be sick, and it all comes back. It is possible to have normal days but a lot of the time there is a feeling of disbelief at what we are going through. If we could forget the last year, we would.”

Mark also paid tribute to the character of Jacob.

He said: “Jacob is just awesome. I know I’m biased but he’s bright as a button. As a tiny baby he would smile on demand when you told him he was beautiful. He’s bubbly, polite, very loving and a cheeky little chap who makes us laugh every day.

“He calls the ends of his Hickman Line, used for taking bloods and administering chemotherapy, his wiggles and stores them in his wiggle bag. When we get home from our days in hospital he wanders straight into his playroom, where he sits for a while as if to say ‘I’m home’. We find it astonishing how well he copes with everything. We are so proud of him.”

Jacob completed his radiotherapy at the end of August, after 28 doses under general anaesthetic every weekday morning. His chemo schedule continued alongside that treatment, with eight cycles completed in total. As Jacob’s damaged skin begins to heal – it was burnt and blistered by the radiotherapy doses – the family are spending some much needed time at home, and waiting to see what comes next.

You can find out more about Jacob and how to support the End of Summer Ball at www.jacobsjoin.co.uk, or you can donate directly to #jacobsjoin? through Just Giving.