Mum who lost son, 4, to cancer creates artwork to ‘bring him back to life’

A mother who tragically lost her four year old son to cancer has found solace in creating unique artwork from his cell images and finger paintings, saying it ‘brings him back to life. ‘ Joanne Humphreys, 60, a professional artist and art teacher from Cheltenham, revealed that her son Graeme was diagnosed with neuroblastoma, a rare form of cancer, in January 1998 when he was just two years old.

Graeme’s tumour, which was entwined around his spine and one of his kidneys, left him with survival odds between 5% and 15%. Despite undergoing chemotherapy and surgery to remove the cancerous tissue, reaching remission in November 1998, by March the following year, scans showed the cancer had returned more aggressively.

Joanne considered alternative treatments and was ready to sell everything, including her house, to fund gene therapy in New York. However, after seeing one of his scans, she realised the grim reality.

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“I was looking at (the scan results) and I was thinking: ‘Now I can see the extent of the horror that’s going on inside your body,'” she shared with PA Real Life.

Sadly, Graeme passed away on New Year’s Eve in 1999, aged four. His funeral took place on January 9, 2000, where Joanne read out a heartfelt letter she had written to him and played his favourite Winnie The Pooh music.

Joanne, a mother who tragically lost her son Graeme to neuroblastoma, has channelled her grief into a powerful and “cathartic” art project that pays tribute to her son’s battle with the disease.

While she found it difficult to engage in any art during Graeme’s time in hospital, aside from two quick sketches, after his passing, she embarked on an artistic journey, incorporating his childhood finger paintings and magnified images of neuroblastoma cells into unique pieces that poignantly illustrate his illness.

In 2020, Joanne also produced ‘The Process’, an award-winning short film that delves into her personal journey through grief and mourning, featuring the symbolic burning of items linked to Graeme’s cancer treatment.

Her latest work, ‘The Passing Of Time: 40 Portraits’, is an exhibition that showcases images of Graeme and 39 other children who have been affected by neuroblastoma, marking the 40th anniversary of Neuroblastoma UK.

Joanne expressed her desire for a positive outcome from her heart-wrenching experience, saying, “There needs to be some sort of good outcome from something that’s devastating and bad and tragic,”.

She reflected on the human tendency to focus on the negative, emphasising the importance of finding ways to make things better, stating, “As human beings, we do dwell on the negative, and I think it’s just switching it and thinking, what can I do to make things better? “.

Her motivation extends beyond personal healing, as she aims to raise awareness about the cruel disease, adding, “I just wanted to get it out, get it out of my system, but then again, to be able to share with others and raise awareness of this awful cancer as well.”

Through her art, Joanne feels a connection to her late son, concluding with the poignant remark, “It’s bringing Graeme back to life again.”

Graeme first fell ill just before his second birthday in October 1997, battling frequent chest infections initially, the GP sent him home with antibiotics.

It was during a haircut weeks later that a lump was found on his head, and by Christmas, Graeme had developed a limp and was crying “non-stop for four or five nights”.

His mother, Joanne, recounted how his symptoms were overlooked at least four times, but after insisting on a second opinion from a different GP, he was finally admitted to Cheltenham General Hospital.

The young boy was then transferred to Bristol Children’s Hospital, where he was diagnosed with stage 4 neuroblastoma in January 1998 a moment Joanne described as being thrust into “another world”.

She was informed that immediate treatment was necessary because neuroblastoma “latches onto nerves”. However, she faced the stark reality that there were “no recognised treatments” at that time, with only a handful of clinical trials on offer.

“It was hard to understand that, we are in this modern world and children are dying from this cancer and there are no recognised treatments for it,” Joanne expressed her disbelief.

Feeling like they were making monumental decisions, she said, “We were just his parents, it was like playing God with your own child’s life.”

Graeme underwent seven rounds of chemotherapy at Gloucestershire Royal Hospital, which led to hair loss and mouth ulcers.

Joanne, determined to “know everything”, made sure she saw all his scans. Seeing the extent of the cancer visually helped her grasp the severity of Graeme’s condition.

While describing the situation as “surreal, otherworldly situation”, she expressed: “I wanted to see what was killing my son.”

Following a successful surgery to remove the cancerous tissue at Bristol Children’s Hospital in June 1998, Graeme underwent a stem cell transplant. By November that year, he had reached remission.

However, a routine scan in March 1999 revealed the return of the cancer. Joanne recalled: “I remember saying to (the doctor), ‘So what you’re saying is, my son’s going to die’.”

Refusing to “give up”, Joanne began exploring alternative treatment options and consulted several experts in the field, including Jon Pritchard, a pioneering paediatric oncologist.

But when a bone scan at The Royal Marsden indicated further treatments “would kill him”, Joanne confessed she felt “completely and utterly hopeless”.

“The tumours were completely consuming all of his body,” she said.

“One was pushing one of his eyes out, the other eye was going in, and there was this row of tumours all along his throat area, choking him.”

Joanne and Graeme’s father then decided to make the most of the time they had left with him. They booked a few holidays, taking him and his older sister Rebeca, now 31, to Disneyland, Florida, and Center Parcs.

Graeme later received localised radiotherapy at Cheltenham General Hospital, which helped to make him more “comfortable” before he passed away at home on December 31 1999.

Joanne admitted that the shock of his death “numbed” her, adding: “A big portion of my soul went with him.”

Following Graeme’s passing, Joanne embarked on an art project as a form of “release”, requesting images of neuroblastoma cells on slides. However, she didn’t complete the project until 2020.

She creatively combined cell images with Graeme’s childhood finger paintings, resulting in a 3D porcelain piece crafted from one of his “scribble drawings”.

“It was disturbing to find the psychedelic patterns of these cells in pink dye so beautiful, while knowing how much destruction they could cause,” she expressed.

In 2021, Joanne resolved to create a larger exhibition in tribute to Graeme, coinciding with Neuroblastoma UK’s 40th anniversary in 2022.

She has since developed The Passing Of Time: 40 Portraits for Graeme and 39 other children affected by neuroblastoma and is now seeking a permanent home for it in a public space or educational or medical environment.

As an artist, Joanne voiced her desire to ensure that children lost to neuroblastoma will live on through her art.

“Graeme was here, he left a stamp, I’ve got his finger marks, I’ve got his drawings that he’s done,” she shared.

“I think because your child is such a big part of who you are and they never leave you, they’re always there with you… and I’m now living my life for him.”

Regarding the 40 portraits, she added: “I wanted them to be talking with each other and to (show) the strengths of the children they’re in unity together to speak of their experiences of life and death.”

“They need to be somewhere for people to see, and when people see the portraits, their reaction is, ‘They’re all so beautiful.'”.

Neuroblastoma UK invests in essential research for developing new, more effective and less harmful therapies for neuroblastoma. For more information, visit: neuroblastoma.org.uk.