The inspirational man behind what we do

When Ruddi Waterworth-Jones was six-and-a-half months old he became poorly. His mum Ali thought it was just a childhood illness, possibly even teething. She took him to and from the doctors four or more times where he was treated for all sorts – teething, asthma, nappy rash – the list went on.

One morning after endless sleepless nights Ali decided to take Ruddi to Huddersfield Royal Infirmary's Accident & Emergency department as she just felt something wasn’t right. They didn’t leave hospital again for 14 weeks! The word ‘nightmare’ is probably over-used but this was the start of an absolutely torrid time for Ruddi and his family.

Ruddi was prodded, poked, sedated and injected. He was given ‘the works.’ Huddersfield Royal Infirmary transferred him to Calderdale Royal Hospital where Ali and Ruddi’s dad, Craig, were told that a mass had been discovered on his bladder. It was then that they transferred Ruddi to Leeds St James’s (Jimmy’s) Paediatric Cancer/Oncology Unit, Ward 10 … Ruddi’s new family.

Ruddi’s family spent the first two weeks waiting for results on his lumbar puncture, MRI scan and other tests. These tests unfortunately confirmed that Ali’s beautiful baby boy had Rhabdomarsacoma, a cancer of the soft tissue. The tumour was huge in relation to the size of Ruddi’s tiny body and it was connected to both his prostate gland and bladder.

Ruddi would have to undergo months of chemotherapy in an attempt to rid his tiny body of the tumour. Once that was over surgery was required and then radiotherapy.

Treatment

The chemotherapy started in March 2009 and went on for 7 months. Ruddi was in and out of hospital with many infections as the chemotherapy shut his immune system down and ravaged his body. He was a very poorly baby, having endless operations to fit Hickman lines (a line put into him to administer the medicines directly into his veins). These then became infected adding to the list of problems Ruddi faced. He endured tests for this and tests for that, sometimes they couldn’t find veins in his arms, feet and hands so the doctors would have to find veins in his head. For Ali, it was absolutely heart-breaking. Ruddi would look to her as if to ask why?

The effects of chemotherapy

Over Easter 2009 Ruddi’s liver failed! This was yet another terrible side effect of the chemotherapy that was being used to try and save his life. Ruddi’s family were told to say goodbye to him and expect the worst. After three days of total devastation and heartbreak for his family, Ruddi finally opened his eyes on Easter Sunday. Ruddi had fought and fought and eventually was able to carry on with the treatment for his tumour. Amazingly, Ruddi pulled through and Ali then knew she had a true warrior in her brave little boy.

In September 2009 the doctors delivered Ali yet more bad news. Ruddi’s tumour hadn’t shrunk as much as they had hoped and he would unfortunately have to have his prostate gland removed along with part or maybe all of his bladder. If that operation hadn’t happened Ruddi would never be cured and would more than likely have lost his battle.

On September 16, 2009 at 7.30am Ruddi was taken to the operating theatre. Eight hours later the three lifesaving surgeons brought him back to Ali and Craig where he was taken into intensive care to recover. The surgeons had removed all of the tumour but had to remove Ruddi’s prostate gland and all of his bladder. This devastating news meant that Ruddi would never be able to father his own children and would have a urostomy bag instead of a bladder for the foreseeable future.

Treatment in America

After the operation Ruddi underwent MRI scans showing that although the tumour had gone there were still a couple of grey areas that caused great concern. The doctors felt that radiotherapy was the next step. True to Ruddi’s history this was not normal radiotherapy ... that would be far too easy! Ruddi would have to undergo proton therapy.

The proton therapy took place in America over three months. Ali, Craig, Ellys (Ruddi’s big sister) and Ruddi flew out at the beginning of December, leaving behind all the remainder of the family, including Ruddi’s other big sister Jade and her brand new baby Rory. It was a very hard time.

Once in America it was no holiday. Poor Ruddi had to have a general anesthetic every day in order to allow the medical team in Florida to be able deliver the proton beam precisely. Ruddi still has two tiny pin prick tattoos on his pelvic bone from where the treatment was delivered.

However it was all worth it as now

… Ruddi today

Although the tumour and all signs of cancer have gone, Ruddi is not left unscathed. Due to the effects of the chemotherapy he now has rickets and his kidneys were damaged and now don’t function correctly which has affected his bone growth. He doesn’t walk as strongly as most children but he is getting there with the help of his daily medication which he will be on for life. Ruddi will always have kidney and bladder problems.

In years to come as Ruddi grows he will have more operations, one of which will be to build a new bladder from his bowel tissue.

Ruddi has now progressed to 6 monthly tests to ensure the cancer has not returned. Every test brings anxiety and worry to Ruddi’s family. Ruddi is a truly inspirational, brave boy and he continues to fight on.

In September 2012 Ruddi started reception class at school, where he made many friends and has fitted in extremely well and is now at high school. Ruddi loves nothing better than fundraising for Ruddi’s Retreat.