THE red-haired girl with the sunny personality before me has very little memory of her childhood experience in hospital.
Lily Burke was diagnosed with Acute Lymphoblastic Leukaemia (ALL) as a baby and doesn’t remember much about her mummy driving through the night from their home in Cobh to Our Lady’s Children’s’ Hospital, Crumlin, for treatment that would save her life.
“It was easier to get going at 4am in the morning when Lily was asleep,” recalls mum, Jess Burke-Walsh.
“There wasn’t much traffic on the motorway. I used to eat jellies to keep awake and for energy. We made the trip in the one day.”
Noe aged eight, Lily is a lively, energetic bundle of fun; a girl who knows what she wants.
“Lily is weak for herself,” says Jess, smiling. “She is a tough cookie and a real live-wire.
She has a big day coming up too. Lily is making her first Holy Communion on aturday, April 21.
“She wants a veil and a tiara, and all the trimmings. We got away with the parasol!” laughs Jess.
Lily is justifiably proud of her fiery-red luscious locks, which she lost temporarily when she was undergoing treatment.
“My hair is down to my bum now. It was shortest when I had no hair,” she says innocently.
Her First Communion will be a memorable occasion for all the family — her younger brothers Jay, three, and one-year-old Mason are looking forward to their big sister’s special day.
“When Lily was sick, I wondered if she’d get her First Communion, or see the day she would get married,” says Jess. “I didn’t cry when she started school because I was so happy she made it there.”
The ordeal for the family began when Lily was 20 months old and her mother brought her to the doctor with a temperature.
“I thought I’d nip in and get Lily seen,” says Jess. “I had a fitness class scheduled for later. I’m a fitness instructor.
“To be on the safe side, I decided to bring Lily to the doctor. I thought I’d be holding my class as usual later that day.”
Things didn’t pan out that way.
“Lily had an unusually high temperature,” says Jess. “And she was lethargic. I wasn’t worried too much. Calpol usually did the trick if Lily was running a temperature.
“We were about to leave the doctor’s surgery when the doctor called us back. He said that yes, Lily’s temperature was very high, and he wanted her to go to hospital because she was dehydrated.”
Did alarm bells ring then?
“Yes, I was a bit taken aback when the doctor called us back into the surgery,” says Jess.
The mum prepared herself to be in the hospital for a few hours while Lily was given fluids by drip. “And she had to get her bloods tested as well,” she says.
“I didn’t bring her pyjamas. When it looked like we’d be at the hospital overnight, I called my mum to bring up some pyjamas for Lily. I was anxious around 4pm that Lily had had nothing to eat all day and I went to get her some dinner.”
The women were happy to wait for Lily while the drip did its work. But nothing could prepare them for the devastating news that Lily had a diagnosis of ALL — the most common leukaemia in children.
“We were called in to the consultant’s office,” says Jess. “I remember freaking out. I had studied biology in school and I followed Dr Clodagh Ryan when she explained that Lily’s red blood count was low and her white blood count was four times higher than it should be. The doctor told us that lymphoblastic cells, leukaemia cells, were showing up.”
What went through the young mother’s mind, hearing that her child had a form of cancer?
“I wondered was Lily a haemophiliac?” says Jess. “It was hard to digest, I needed a few seconds to take everything in, and then I asked Dr Ryan to tell me what we were facing. It was frightening. I was a young Mum, only 22. I said; ‘Go on, tell me’.”
Lily would need blood transfusions and chemotherapy treatment.
“We’d have to go to Crumlin, the doctor said. It was the best hospital for children who have cancer.
The treatment was to be for a minimum of two to three months — it ended up being close to three years. Lily was to be on chemotherapy every day. She wasn’t yet two.
“Already her hair was growing like mine. She had very thick red hair. Lily lost it when she underwent the treatment.”
The journeys to Crumlin Children’s Hospital began before sunrise. It can be a lonely time.
“It was just me and Lil,” says Jess. “We went to Crumlin on June 1. Lily got a bed in an isolated room. She had a Hickman line inserted to get blood platelet transfusions and she started chemotherapy treatment. Lily didn’t complain. She is a very good child.
“Even when she had to be injected through her leg for an infusion, she was very brave. She had regular bouts of chemotherapy treatment and had chemotherapy orally every day.
“Lily would go off to the playroom in the hospital smiling. I was desperate,” says Jess. “The worst parent on the ward.”
Mother and daughter initially spent two weeks in Crumlin Hospital. “You literally shut down,” says Jess. “Your life changes in a second, the second you get the ALL diagnosis.
“You are told that 90%, we’ll get through this. All you see is the other 10%.
“I called work to fill them in. I didn’t know what was happening. I didn’t know what was coming. Lily’s bloods were constantly tested. The treatment was proving effective, so we could leave Crumlin, returning two or three times a week.”
The cancer was unpredictable.
“Lily was low risk then she was high risk,” says Jess. “The dose of treatment changed when we got a bit of a setback. If A wasn’t working, then B was tried. We went from A to C. Lily was on steroids five days a month. She smiled all the way through.”
Lily made friends too.
“The Children’s Leukaemia Association, Cork, was a great support to us,” says Jess. “We made friends through the association and felt less alone. Lily made great friends with Emma. Bernie, a lovely nurse in the Mercy Hospital, became a true friend to us. She made things bearable.”
Lily had to stay indoors when she wasn’t attending hospital.
“Other kids on the estate called to see her,” says Jess. “But she couldn’t go out to play. If there was a party; Lily couldn’t go. If we went down town or to the Mercy Hospital for an appointment, she had to wear a mask for fear of infection. It was just our way of life. Lily was on a set programme where she had days of steroids and chemotherapy and then a period of maintenance.”
Lily was brave and fearless. “When we went to Crumlin, we went up and down the same day,” says Jess. “Lily called it the noisy hospital. We left home at 4am and made the return journey at 4pm. I was lucky Lily was so good.
“In the beginning we had to travel to Dublin twice or three times a week, then once every three months, attending the Mercy Hospital in between. Lily was treated from May, 2011, until February, 2014.”
This spring, things will be different. Lily will be among all her school friends from St Mary’s NS making their First Holy Communion. Her long red hair, cascading down her back, will be resplendent, crowned by a sparkling tiara.
Jess recalls: “I remember when Lily was in hospital, she sat on my knee and when she moved forward, her hair was everywhere. It came out in clumps, so we had it shaved off.”
Lily bounced back to good health and her beautiful red hair grew in abundance.
“We return to Crumlin once a year now,” says Jess. “I can remember the first day, seeing Lily down the hall, so pale and frail.
“Lily will be seen until she’s at least 25 years old. She had physio when her treatment for ALL ended. She seemed to have difficulty with her walk. She was a bit clumsy. ALL can have a long-term effect on muscles.
“She is running around now, playing basketball and climbing with her brothers. Lily never stops going now. Once, she could barely move.”
She’s making up for lost time.
“Lily couldn’t socialise for three years,” says Jess. “She started playschool and never looked back. I could relax a bit then.”
And she started her travels.
“Yes,” says Jess, smiling, “Lily got to go to Disneyland, which was amazing. She was a guest of Barretstown three times. We went to Lourdes with the Children’s Leukaemia Association. The outings with them were really special. We still remember our trips to Trabolgan. We had so many good experiences; it helps you to see things differently.
“The support we got from the Children’s Leukaemia Association when we were in hospital was brilliant. Having a chat and a cup of coffee with other parents helped us feel a bit normal. The company was great.
“Now we meet in happier times and like to try and give back something. It is our third year holding a table quiz for the association. They deserve our support.”
Lily’s brothers are united in their support for their big sister.
“I gave Jay a biscuit the other day,” says Jess. “I told him not to tell Lily. Then she came in and he said, ‘What about Lily’?”
She is Granny’s pet too.
“Now, every minute counts,” says Jess. “Lily remembers good times. We are all looking forward to her First Holy Communion. It will be her special day.
ALL, Acute lymphoblastic leukaemia, is a type of cancer in which the bone marrow makes too many immature lymphocytes, (a type of white blood cell). Leukaemia may affect red blood cells, white blood cells and platelets.
Children’s Leukaemia Association, 9, Dyke Parade, Mardyke. Cork. Phone: 021-4949801