Sam’s Journey

On the 4th January 2013 Christine and Carl Shaw’s beautiful little boy Sam was diagnosed with high risk neuroblastoma, a highly aggressive form of childhood cancer. Just 5 days later, Sam’s parents received the devastating news that their son’s cancer was classed as stage 4, meaning it had spread from the main tumour to Sam’s bones and bone marrow.

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The long term survival rate for children with high risk neuroblastoma remains at less than 40%, which is around half the average survival rate for childhood cancers. To give Sam the best chance of beating neuroblastoma for good, his oncologist at Manchester Children’s Hospital has recommended that Sam receives immunotherapy treatment. The most successful treatment uses the antibody ch14-18, and cytokines IL-2 and GM-CSF, trialled in America and proven by the Children’s Oncology Group to increase children’s chance of survival by 20%. This Immunotherapy treatment will help stimulate Sam’s immune system so that his own body should be able to recognise and attack the neuroblastoma if it was to return. This is the main worry with this deadly disease, where the relapse rates are high.

The treatment we hope Sam will receive in the United States is not available in the same format in the UK, where anti-GD2 and IL2, or just anti-GD2 alone, are given as part of a randomised trial. The proposed treatment and associated costs of over £250,000 will not be funded by the NHS which is why Sam desperately needs your help.

Sam’s initial symptoms were very vague and came and went over several months until they seriously escalated. Each symptom was attributed to something simple. Waking in the night crying and saying his legs were hurting was put down to growing pains. His night sweats were thought to be related to just growing, as they happen sometimes when children are going through growth spurts. He was a little lethargic and tired and this was put down to it being ‘that time of year lots of viruses going around’. Despite numerous visits to their local GP’s surgery his condition was not suspected. When Sam had groin pain and started limping, an X-ray in Accident and Emergency didn’t find anything suspicious, and Sam was given paracetamol and ibuprofen for a few days in case he had a virus. When he began to lose his appetite and felt bloated this was put down to being constipated. Eventually poor little Sam’s constipation became worse and he had such bad back pain and aches and pains in his legs he was only to able sleep sitting upright. He was struggling to get up and down stairs.

Sam’s parents again went back to his GP surgery and insisted on further investigations. Tests showed that Sam’s ESR and CRP, blood tests results that indicate inflammation and tissue damage, were highly elevated. Sam was referred to Alder Hey Children’s Hospital for more tests with suspected rheumatoid arthritis. By this time he was unable to walk at all. An ultrasound investigation found fluid on his hips and then the tumour in Sam’s adrenal gland was discovered.

Sam’s mother Christine said, “As a parent all you want is to protect your child and see them grow up healthy and happy…Sam’s diagnosis has left us feeling completely helpless in the face of this terrible disease that has taken over our little boy’s body. He faces months of gruelling treatment including 80 days of intense chemotherapy, followed by surgery, further high dose chemotherapy, stem cell rescue, and radiotherapy and then, we hope immunotherapy in America.

Since he was diagnosed with neuroblastoma Sam has gone through so much; a procedure to have a central line inserted into his main artery to allow chemotherapy to be administered, countless X-rays, ultrasounds, gamma scans, echo cardiograms, ECG’s, MIBG scan, CT scans, biopsies, daily injections, the insertion of a nasal gastric feeding tube as well regular examinations, blood pressure checks, thumb pricks and more. But at every stage he has been amazingly courageous – the doctors and nurses can’t believe how brave he is. He hardly ever cries, he takes his medicines on his own with no fuss and he is the best ‘sleeping lion’ when it comes to CT scans. He is just our amazing hero.”

In the first few weeks following his diagnosis little Sam was very poorly. His parents could only watch and witness how the challenging treatment knocked the stuffing out of him. Christine said, “Sam lost weight rapidly before our very eyes and we felt our little boy slipping away, but then he showed us what a fighter he is! Sam has started to put weight back on, and we feel that our happy, cheeky, energetic little boy, so full of character, has returned to us.

We have seen how very fragile and then how resilient and robust Sam is. He has had his 40 day review and the results are encouraging. His tumour is responding to chemotherapy and the tests on the bone marrow aspirate show it to be clear of disease. This does not mean the cancer has gone from his bones, but is a very positive indicator that the treatment is working. We now wait for the end of intensive chemotherapy results at 80 days and pray for more positive news!

All we hope for Sam is that he is given the opportunity to beat this terrible disease and have the best chance of survival.

Please give Sam a chance of life by making a donation, help him by fundraising, or by sharing his story with everyone you know. The more people we can reach the more chance we have of meeting our ambitious target and getting Sam to America for treatment by early summer. We can’t do this without you! I ask everyone who reads this to do whatever they can to give our little boy the chance to grow up.”

Please give as much as you can afford, or hold a fundraising or sponsored event to help Sam and children like him. Every donation, no matter how small, will make a difference.