‘Tommie’s Trek’ – paying tribute to a brave little boy

‘Tommie’s Trek’ – paying tribute to a brave little boy

Friday, 22 May 2015

If you are looking forward to a lazy bank holiday weekend, spare a thought for Deb Goule from Porthcawl, who will be pushing herself to the limit – cycling almost 300 miles AND climbing three mountains!

The three-day marathon – cycling from Porthcawl to north Wales and then cycling home, pausing ‘only’ to climb Snowdonia, Cader Idris and Pen-y-Fan – is both a celebration and a ‘thank you’.

Deb has called it ‘Tommie’s Trek’ and it is a celebration because Thomas, the son of her neighbours, Paul and Sue Smith, has just recovered from major surgery, and six months of intense chemotherapy, after he was diagnosed with a malignant tumour, on his second birthday.

It is a ‘thank you’ to all the medical staff who looked after Thomas, and especially to the cancer charity LATCH – an organisation that Paul and Sue simply cannot praise enough!

Cash raised by Deb’s marathon effort will, of course, go to help LATCH continue its work.

It was on August 27, 2014, the day of his second birthday, that the Smith family’s world was turned upside down.

Paul explained:?“It was a rare cancer – only 45 per year are diagnosed, but it is a fast-growing one and that is why everything happened so quickly.

“Tommie had been having digestive problems for a while. He wasn’t eating well and was badly constipated.�

What the family didn’t know was that a tumour – the size of a cucumber – had grown behind his spine.

The paediatrics unit at the Princess of Wales examined Thomas and the next day (his birthday) he was in UHW?Cardiff for tests.

The following day he had an MRI scan, a biopsy and a CT scan. By now, the presence of a cancerous tumour around the spine had been confirmed, but Sue and Paul were told that doctors had to be sure that it was the main one, and not a secondary.

The tests at least established that it was the only cancer present, and chemotherapy started almost immediately.

The surgery to remove the tumour needed careful planning, in case it had invaded the spine, and this operation was performed at Bristol Children’s Hospital.

It was during this incredibly stressful period that LATCH proved an enormous help. Paul is an exercise physiologist at Cardiff Metropolitan University, and Sue is a teacher at St Clare’s School, Porthcawl.

Thomas’ older sister, 11-year-old Emily, goes to the same school, and the logistical problems of being at the hospital while Thomas was being treated, while still looking after Emily, meant that both parents needed a great deal of time off.

Sue said:?“LATCH does so much more than help fund paediatric equipment at the hospital – although that is vital.

“We had help with overnight accommodation when Thomas was in hospital, and even help with parking, because parking fees are huge and you can’t afford to park there overnight.

“We had help from social workers and support workers to cope with financial and practical problems�.

There were further complications which no one could have foreseen.

Paul explained:?“When Thomas was diagnosed, we were having a kitchen extension done.

“As Thomas’ treatment continued, and it was time for him to come home between bouts of chemo, the consultant explained that his immune system was weak due to the treatment, and that dust from building work could be a real problem�.

It was made quite clear that he could not come home until the work was complete, so Paul and the builder had to work 20-hour days to get the house into a state where Tommie could come home.

When he did come home, it was a great relief to all. Deb’s son Joe is Thomas’ best friend and they were soon playing together again as if there had been no interruption.

There was an even greater relief a few months ago when Thomas was pronounced cancer free. He will, of course, continue to be monitored on a monthly basis until he is 18, and less frequently after that.

Despite their ordeal, Paul and Sue know far more about cancer than they ever expected to know, and they regard themselves as “lucky� because Thomas’ cancer was a treatable one.

They remain deeply grateful to all the LATCH staff. They fondly remember the nurses who played with Thomas as a way of explaining how he would be treated – introducing him to ‘Chemo Duck’ – a toy duck that is fitted with the same IV lines that Thomas needed.

Very recently, the family was invited to the opening of the latest extension to the Children’s Hospital in Cardiff – funded by the Welsh Government and the Noah’s Ark Appeal.

Sue commented that LATCH was still playing a vital role, supplying the Paediatric Oncology ward with essential medical equipment.

She said:?“In return we wanted to raise money for LATCH so other families can benefit from similar support, help and advice.

“We have already received donations and had a charity evening in the Ancient Briton, Newton, which raised nearly £3,000, with the help of local businesses that donated prizes for the raffle.

“We would like to raise a lot more for this amazing charity that helped our family and many other families in the same position.�

Which brings us – and this is definitely a case of last, but not least – to Deb. She is a runner rather than a cyclist, so she is unsure how she will react to the challenge of combining cycling and then walking (and occasionally running) up three mountains.

Paul, and Deb’s husband, Tom, will be her support team and Paul, with his knowledge of exercise physiology, is not entirely reassuring.

He said:?“Deb is going to be working her muscles in three different ways – on the bike, going uphill, and coming down.

“In many ways, running downhill can cause more problems than the other two. She should be alright as long as she keeps moving, but if she rests too long and the muscles stiffen up – it could be tough then!�

Anyone wishing to donate money can either use the JustGiving page ‘Tommie’s Trek’’, or the open Facebook group under the same name.

It’s fair to say that Deb will be giving full value for any donations!

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