'It had to be a rare form of cancer — so many things went against Lily and us'
Lorraine Sebestova and daughter, Lily, who battled hard against alveolar rhabdomyosarcoma, a rare and aggressive form of cancer. Picture: Conor Healy
During her daughter’s battle with cancer, Lorraine Sebestova prayed to God for three things.
She said her first prayer when Lily was referred to Crumlin Children’s hospital for tests after she found a lump on her hand.
The schoolgirl had just celebrated her seventh birthday on July 23, 2021, when her friend’s father noticed a lump on her thumb after she fell on the trampoline.
“We thought she got a bite, or sprained her thumb” said Lorraine.
“She went to A&E and was referred to Crumlin Children’s hospital for an MRI because their machine in Tralee was broken.
Lorraine prayed to God that her results would show “it wasn’t cancer”.
But four days later, the medical team came to see Ms Sebestova and her husband Jozef in the ward in the Dublin hospital where they explained that their daughter had been diagnosed with a rare form of cancer.
As the family struggled to come to terms with the devastating news, Lorraine asked God to “please let Lily survive.”
Their brave little fighter lived for just over three years, battling “the river of cancer” that flooded their happy home in Tralee, Co Kerry.
At the age of nine, Lily underwent the amputation of her hand which she later donated to medical research to help others fighting cancer.
But following intensive treatment 300km away from home, Lily’s health declined, and she began to approach the end of her life.
In November 2024, Lorraine’s prayer changed for the third time, and now she asked God to “please mind whoever is waiting for Lily, just make sure they grab her”.
“I wasn’t ready to let her go” she told the — three months after Lily’s passing.
“Your prayers just go down and down, and the bar just keeps dropping and the sicker she got, you start changing your prayers and clinging onto anything.”
Lily battled hard against alveolar rhabdomyosarcoma which is a rare and aggressive form of cancer.
The tumour is extremely fast growing and usually occurs in teenagers and young adults and spreads widely at an early stage.
“She didn’t even get diagnosed with a cancer that I could talk to other parents about,” said Lorraine.
“It had to be a rare form of cancer — so many things went against her and us.”
When Lily came home to receive palliative care, her mother turned to Our Lady and decided to speak to her as one mother to another.
“I would close my eyes and visualise Our Lady, and I’d say, ‘look, your young fella was taken from you, and you know the pain of that, so please let me pass her over to you where I know she will be safe.
“I saw myself reaching out with Lily tucked in between my arms, I would feel the Blessed Virgin all along her arms and hands and then on the day Lily was passing, I’d let her go into Our Lady’s arms.
“I had to pray that I would be ok with saying ‘Now I’m handing her over.’
Lily's fight sadly came to an end on November 15, 2024, at home, surrounded by her family.
Speaking at her funeral service in Our Lady and St Brendan’s Church in Tralee three days later, her mother said Lily was by far “the biggest and best advocate for herself in her journey of cancer".
“Her diagnosis did not stop her,” she said.
“She had her hand amputated and by the time we home she was down looking for pancakes and she was whisking the batter next to me five days later.
Despite their devastation, and the unimaginable loss of their “firecracker” Lorraine is keen speak about the “taboo that surrounds a child’s death.”
“There is so much loneliness and isolation involved when a child is sick or dies” she said.
“Some people would cross the road when they would see me coming, rather than ask me about Lily. I understand people find it hard, but nobody wants to speak to you, people would rather avoid you.
“There is so much shock after the trauma is gone too, but the shock carries you through, it just comes in waves. But you got me on a good day,” she continued.
Having prayed so hard for her daughter she feels that “God really got it wrong by taking Lily".
“I was not Lily’s advocate” she said “Lil was an advocate for herself and was very independent since she was tiny.
“She believed in human rights. She was needed here for others, I often tell God 'you really made a mistake', if anyone was going to advocate for sick children or broken families, it was Lily, and advocating was right up her street, once she got up on her soapbox that was it."
Ms Sebestova described her daughter as “stubborn, outspoken, and very determined”, but doesn't think that Lily followed in her footsteps.
“Well maybe she was my inner child,” she pondered. “I am determined in my own way. But I never knew a child like Lily.
“She was a stubborn baby, and when she wanted something, she cried a lot. Everything was on her own terms; from the day she was born.
“From 10 months old, she took off and never stopped. For her size, she was a great judge of character and very comfortable speaking her mind. She could read a room, no problem.
“I had to apologise to so many people for my daughter’s bluntness,” she laughed.
“Honestly, if she didn’t like you, she would say it. I often heard her telling people they needed to get their roots done amongst other things. She was like an older woman and her friends were all older people. Her neighbours called her ‘the antique’.
“I am not going to canonise her though, she wouldn’t even want that for herself, Lily was a weapon at the best of times,” she joked.
“But she was also the most caring child, a great protector of the vulnerable and was easily able to bring people in if she felt they were on the outside. She had a very big heart and was so thoughtful.
“She had very few friends her age, but they were close friends, her best friend was Jamie Lee, and they were very good to each other”.
“My mother, her nana Maureen, was also extremely close and bonded with her.
In the time that has passed, Ms Sebastova has understandably not fully come to terms with Lily’s death.
“I’m in denial” she said. “I sometimes think she is in Dublin. This life is just beyond your wildest dreams. My whole life was taken up with Lily.
“There is post traumatic syndrome in every single one of us, we have our own trauma, these kids existed, they became our lives, and we became theirs. You bond to the hospital, it’s like security for the child who is supported, but you’re not supported, and we don’t talk about that enough.
“Then that bond with the hospital is gone, and I still fear something is going to happen to Lily. I don’t realise she is gone.
“You’re left trying to manage your family, you feel guilty over not being around the others so much because Lily needed to be in hospital. I have older children, we missed every event, their 18th and 21st, the Leaving cert and first day in college. They all suffered.
“On other days you’re just broken into pieces.
“You try to get up and move, then you live in complete fear and anxiety.
Throughout Lily's sickness, the family did not use the word cancer because “you only give it power”.
“It’s a big broad bullshit term for a diagnosis that flooded our home like a river,” she explained.
“It invaded and infested our lives, and we went into battle every day. Lily knew her body was ill, but her mind was fine, and that was nobody’s fault.
“She said it as it was and if she was pissed off, she would tell you. When Lily asked questions, we had to be honest and tell her what was happening.
“I hate when people say children are resilient, I want to scream when I hear that, please do not use that word.
“These kids are under fire and under attack, they are so courageous.
From 2021 to last year, Lily and her mother “practically lived in Dublin”, and the fallout of that forced split in their family is only coming to the surface now.
“Lily suffered and that broke us all up, we were living like a separated family. I was in Dublin and my husband was in Kerry with our son.
“We missed out on so much, my husband was amazing to Lily, but he is in bits over her and we often forget about the fathers and their emotions and feelings.
“A sick child carries a very heavy energy in the house, when that child is good it’s good.
“We are like sponges, we soaked up everything Lil was going through, when she got sicker and hope got slimmer, we all felt it, we all got sick.
“My husband and I, our relationship was struggling — but we didn’t know.
“We had to go to counselling. I lay with Lily in my arms for years, my son comes into me now and you feel so guilty over all the feelings you have.
“We are rebuilding our bond, and I am loving him but thinking it’s Lily next to me, and I wake up and it’s not her. My whole life was taken up with her. We did everything together we were best friends.
“She went from a life full of curiosity to fighting to live. And Lily wanted to live, she had plans.”
Lorraine had already lost a little girl Muireann who was stillborn 21 years ago.
"My older children got to see her, and we talk about her all the time. Again there is a taboo about the death of a child — so what has changed in 21 years?”
Lorraine also says their cancer journey was made even more difficult by the fact that they live in Tralee — with Lily's treatment based in Dublin
"Families are sent to Dublin where you are not guaranteed accommodation for a sick child.
“You may not be able to stay in the hospital because a lot of the time, Lily was a day patient five days a week.
“You’re living away from home with no where to stay, but you have to be there.
“This made me livid,” she continued. “Not only would we have to get the train to Dublin, then we had to either use public transport or a taxi to get the hospital.
“The treatment has serious side effects and if you’re using public transport to get to your hotel, Lily could end up getting sick into a bag. Never mind the bad weather and being surrounded by strangers.
“It was mortifying for her and her dignity was destroyed.
“I couldn’t drive to Dublin because of the issue with parking and the price of it. Every time we went to Dublin it was a different hotel and no home comforts”.
Currently, 20 families are accommodated at any one time in the Ronald McDonald House at CHI Crumlin and there are no guarantees of a room.
During her sickness, Lily’s family helped raise funds for cancer research and had highlighted the long journeys they made from Kerry to Crumlin Children’s Hospital.
“If there was a concert or event on in Dublin, hotel prices would sometimes triple.
“Then my husband had to find a job to be able to pay for all the hotels and food and travel. He kept the show on the road and minded our son. He deserves so much credit.
“The health service here is disgraceful and there was no support, not just for the children, but for the families.
“The services for sick children is not good enough and we don’t talk enough about people coming from all over Ireland who come up against all that stress and pressure” she said.
“There was no counselling or play therapy for a child to cope outside of Dublin. She didn’t even fit the criteria for Enable Ireland as a child with cancer and an amputee.”
Nonetheless Lily faced her treatment with confidence but when she lost her hair the first time "she lost her spark".
“She would not go out anymore” her mother continued. “She would sit in her room looking at the kids playing outside.
“She had her beloved cat and later she got into make up and that got was her own therapy.
“Once her hair started growing back, she regained her confidence. It took time but she did get there”.
The family had researched her diagnosis enough to know that most children who had alveolar rhabdomyosarcoma die and this makes new treatments difficult to find.
“I knew Crumlin had given her everything, so we planned a journey before she died she wanted to see the Eifel tower and her family in Slovakia.
“Lil was home three weeks, and I knew there was not a hope of her surviving this.
“She sat up in the bed the Friday morning before she died and had all her Christmas presents ready.
“Even though she was preparing for her next journey, she took the time to leave us all a little something, a little memory and a little boost.
"That really summed her up."
CONNECT WITH US TODAY
Be the first to know the latest news and updates
