A baby who was diagnosed with dairy intolerance when she was six months old died of a rare cancer just two days after her first birthday.
Rose Jeans, of Cefn Hengoed, Swansea, Wales, was diagnosed with the rare and aggressive atypical teratoid rhabdoid tumor just a few weeks before death on February 13 this year.
Now her devastated parents Andrew and Catherine Jeans have described what they’ve experienced as “some sort of war struggle” and are doing everything they can to keep their daughter’s legacy alive.
Described by her parents as a ‘small gift’, Rose was only six months old when doctors diagnosed dairy intolerance.
However, the girl was later admitted to the hospital, where after a series of scans, doctors found different masses in her brain.
Rose Jeans, from Cefn Hengoed, Swansea, Wales, was diagnosed with the very rare and aggressive cancer a few weeks before her first birthday
The baby girl (pictured with her father Andrew), who was initially diagnosed with dairy intolerance, died just two days after her first birthday
Rosie’s father, Andrew Jeans, said, “It started when Rose was about six months old.
She had seemingly small bowel problems and was diagnosed with dairy intolerance.
“She was hospitalized on New Year’s Eve because something was not right. She rubbed her forehead and played with her hair.
After scans, doctors found different masses in her brain. At first, these masses were thought to be benign birthmark-like lesions, but over the next few nights, she began to worsen. ‘
On January 12, Rose was labeled as nil by mouth and blue ambulance within a few hours to Noah’s Ark Children’s Hospital in Cardiff.
In the hospital, she had several MRIs, CT scans, and three brain surgeries. She also had several attacks due to pressure on her brain.
Mr. Jeans continues, “She spent six nights in the pediatric intensive care unit and on January 28, we were told she had an aggressive cancer called atypical teratoid rababdoid tumor.
‘The few weeks between hospitalization and diagnoses felt like a lifetime.
‘The large tumor in her spine was the cause of the intestinal problems. We were told there was no treatment for her and she would only be with us for a few weeks. ‘
Rose was transferred to Ty Hafan Hospice on February 10, and died just two days after her first birthday, on February 13. in the arms of her mother.
Ms. Jeans said the family was still heartbroken by the ordeal and that every day is a new challenge.
She said, “The past two days have been difficult, but today it has been a bit more positive. You just never know what it will be like when you wake up.
“The only way I can describe what we’ve been through is like some sort of war battle. What that little girl went through in such a short time was terrible and she didn’t complain, she just went on with it.
“We are so very proud of her. For some reason she was sent to us as a small gift. It is so cruel how perfect she was and no one cared what she kept hidden.
“Between my son Oliver, seven, and her, I had two miscarriages and she was the only girl on this side of the family. She was so in demand and we loved her very much.
Rose (left with father Andrew and right with mother Catherine) was transferred to the Ty Hafan hospice on February 10 and died just two days after her birthday in her mother’s arms
Rose was taken to Noah’s Ark Children’s Hospital in Cardiff where she had several MRIs, CT scans and three brain surgeries
Doctors found that the one-year-old (pictured with her brother Oliver) had a large tumor in her back that was causing the bowel problems
“She had such a character. We nicknamed her ‘Little Miss Unsociable’ because she would choose who she would give her love to – she didn’t shine everyone but she was always happiest in my arms.
“We call Oliver Mister Bump because he’s always out and bumping himself, so we had a small” mister “family. ‘
Rose’s parents said that the pain they went through and are still going through was a motivation for setting up the Rose’s Way Foundation charity.
The name comes from the fact that from the beginning, Rose made sure she did things exactly the way she did.
Ms. Jeans said the main purpose of the charity is to help other families who have a similar nightmare experience.
Although it is still early, they eventually hope to spend money on equipped lodges, where families with sick children can stay to escape the hospital environment.
They also hope to receive counseling training – or get counselors on board – to support families, and work with children’s hospices and other charities to provide activities for siblings of sick children.
“Although we survived that battle, we had an army of support around us,” said Mrs. Jeans.
“For example, my Aunt Julie came to read her every day while she was in the hospital and continued to read to her even after she died.
“Not everyone has that support, so we want to be that Aunt Julie for people who don’t have that network.
“The coronavirus unexpectedly brought things to a halt, but we have already reached two families who are experiencing this.”
Mr Jeans came up with the idea to create a song in Rose’s memory that the family can listen to and also raise money for charity.
When the song Monsters (For Rose) is purchased, money is donated to the Rose’s Way Foundation.
Mr. Jeans said, “When Rose was in the hospital, I saw James Blunt sing his song Monsters on This Morning, which he wrote about his sick father – it’s about saying goodbye. I thought the loss was well summarized and wanted something I could take comfort in.
“My girlfriend, Kat Morgan, is a singer and has a great voice, so she agreed to sing it. Her partner and also a friend of mine, Simon Morgan, rewrote the lyrics to fit Rose’s situation. The couple has supported us enormously, they have such a big heart.
“Singer Amy Wadge, who co-authored the original Monsters, also got in touch to support her.”
Mr. and Mrs. Jeans added, “We just want something good to come out of Rose’s experience.
“We will always be haunted by Rose’s memories of procedures, scans, attacks, endless blood draws and silent tears of exhaustion.
“Rose’s legacy had to continue, her strength and determination lives on in us – and it will be accomplished by doing Rose’s Way.”