Last September, 9 year old Samuel Leib (pictured above) went to the doctors with a sore shoulder. Four months, and a litany of intrusive medical procedures later, he died of Precursor T-Cell Lymphoma – a rare and aggressive form of cancer. In an exclusive interview for Scriptonite Daily, Sam’s father Martin recalls how Sam used his final months to start a charity that will help improve the lives and deaths of countless others.
Samuel lived primarily in London with his Mum and his Nan, spending alternate weekends with his Dad and step family in Milton Keynes. He had a staggering degree of empathy for a child of his age, often expressing himself in poetry – some of which had won awards. He was a kind and gentle soul. A wise head, on young shoulders. His father Martin described him to me as “an outgoing, intelligent, inquisitive, loving little guy”.
Just the month after his 9th birthday, on September 7th 2013, Sam’s Nan took him to the local GP after he had complained of pain in his shoulder that had failed to pass for a week. The GP, concerned about possible blood clot, sent Sam straight to St. Thomas’ Accident and Emergency by ambulance. A consultant told the family it was no more than flu and an achey shoulder. After the pain worsened, Sam was brought back to hospital and after several tests his family were invited into the Parent’s Room to be told the words no parent wants to hear.
“Your son has cancer”
Three and a half weeks and two biopsies later, the formal diagnosis was Precursor T-Cell Non-Hodgkins Lymphoma – a rare and aggressive cancer in the cells of the body that are destined to become T-Cells. Sam had a tumour next to his heart the size of a small fist, the surgical removal of which Doctor’s classed as “not compatible with life”.
Over the next months doctors at The Royal Marsden and St Georges attempted to shrink the tumour with an extraordinary range of chemo therapies. Sam faced as many as three rounds of extremely potent chemo a day for stretches of five days in a row. There was a brief moment in November where the tumour shrank by half, but it quickly regrew and enlarged yet further. Sam was also suffering pleural effusion where the inflammation was causing fluid build up in his lungs, meaning a chest drain needed to be fitted. This is an extremely painful procedure, likened to being stabbed and having the knife left in. It also meant Sam was unable to move in bed, just lay on his back – waiting for the next round of chemo. But without this drain, Sam would have drowned. It was pulling more than a litre of liquid from his lungs every day.
By the beginning of December, Doctors informed the family that Sam’s cancer was at Stage 4 which “means the cancer has spread from where it started to another body organ. This is also called secondary or metastatic cancer.” The family were told that Sam had only a slim chance of survival, and that they should prepare for the worst.
On New Years Eve, Sam’s canular became infected and he had to be fitted with a central line. At this point he was Neutropenic from the chemotherapy and required five different antiobiotics a day to stave off infections due to his compromised immune system. He had three tubes in his neck, one in his arm, one in his foot and the chest drain – meaning he could not move. The pain and discomfort is unimaginable. An adult would find these conditions unbearable, but Sam was just nine years old. He was on several kinds of morphine, but the pain was still significant and constant.
By the end he had suffered several blood clots, his lungs collapsed and he was wearing nappies as toilet trips were too impractical and painful. He was eventually fitted with a catheter just days before he died.
On the Sunday night, after the catheter was fitted, Sam’s pain reduced enough that he could enjoy the night with his Dad, watching the film Monster’s University. It would be the last son and father film night they would enjoy. Just hours later Sam was coughing up blood. On Monday morning he was given a large dose of morphine and mostly slept until he died, surrounded by his family, in the early hours of January 22nd from multiple organ failure.
In an interview with me, Sam’s father Martin recalled the last short conversation they had, as Sam lay dying. In what he believes was Sam’s effort to let him know he was going to be ok, even in death, Sam said “Everything’s gonna be alright Daddy”.
A heartbreaking story. I confess to coming off the Skype call with Martin for this interview and crying my eyes out. But I wasn’t only crying because of this most painful and horrendous death of a young person – but for how extraordinary what he achieved during these months really is.
Just a month into his treatment, frustrated by the lack of distraction from the pain and the awful food – Sam told his Dad that he wanted to make things better. Not only for himself, but for other children and families going through this ordeal. So he set up a charity – Samuel’s charity. The idea was simple – raise funds to pay for some interesting food and entertainments such as maybe some new TVs or DVD players for the Pinckney Ward at St George’s hospital where he was staying. So with his Dad’s help he set up a Facebook group and on October 28th 2013, his charity was born.
They started with the goal of a few hundred pounds. When that was exceeded they set a new target of £5,000 by the end of the year. People were so moved by Sam, who made personal video appeals from his bed, that the £5,000 target was reached an exceeded at lightening speed, with the Facebook group attracting thousands of followers.
Sam made many friends on the ward and in the world as he raced against time to raise as much cash as possible before he died. Even Bruce Forsythe was skyping him to have a chat and see how things were going.
The charity has now raised over £22,000, has its own website where other parents and children going through this painful process can share their stories, and a series of fundraising events have been set up for this year to hit a target of £50,000. These include a skydive, participation in Tough Mudder (one of the most gruelling running races in the UK), and a walk of Hadrian’s Wall.
As Martin says:
Samuel wanted to make each day as fun and bearable as possible for all the children at St Georges Hospital. He knew that it was a very scary, painful and sometimes lonely time going through serious illness. This is bad enough for adults, but for your own children to suffer like this….
The charity aims to provide a whole manner of distractions for bed ridden children and their families, to help create the most amount of fun possible in these almost unimaginable circumstances.
They are in the process of replacing TVs, DVDs, games consoles, books, games, room decoration and sofa beds for parents.
This nine year old boy spent his final months creating a legacy that may well stretch farther than the few short years he spent on the earth. Martin told me that Sam showed peculiar courage throughout his ordeal, attempting to maintain a positive attitude to the end. It was entirely consistent with who he was, that he would seize the opportunity to make a difference in the life of others. So please, help Sam to fulfill his promise – and support his charity however you are able.
Support Samuel’s Charity here. Check out the website, leave a message of support on the Facebook page, share this story on social media, donate money. Whatever you can, do. Here is a thank you message that Sam recorded for the people taking the time to help.