With over 45,000 people diagnosed with cancer in Ireland each year, everyone has had direct or indirect experience of the disease. But while any diagnosis is traumatic, the news that your child has cancer is undoubtedly every parent’s worst nightmare.
September is International Childhood Cancer Awareness Month, when experts aim to put a spotlight on young people (from birth to 24) – and with incidences rising at 1-2 per cent annually, Childhood Cancer Ireland will ‘make the gold shine ‘ to shine a light on the challenges faced by children and their families who are currently undergoing diagnosis, treatment or learning to live after cancer.
The McQuillan family has experience with this as Aoife has experience dealing with cancer at just five years old.
“The symptoms came on very suddenly, we had just celebrated Aoife’s 4th birthday and she was happy and full of life,” says dad Mark. “A few days later she woke up with stomach pains and couldn’t eat or drink – she was very sleepy, pale and dehydrated. My wife Bridget thought she might have a kidney infection and as it was the weekend we called the ambulance who said to take her to the hospital and pack a holdall as she might have to go to the hospital.”
Aoife, who has a two-year-old sister named Orlagh, was rushed to the hospital where she was seen immediately, given some scans and brought in for further tests.
“The next day she had an ultrasound where the consultant, the doctor and the sonographer were talking to each other,” says Mark. “It was obvious they had found something. We thought it was kidney stones (which had been mentioned the night before) but shortly thereafter a specialist informed us that they were being transferred to oncology as they had found a tumor in their kidney.
“I will never forget this moment – there are no words to describe how broken we were. The pain hit us at different times; My wife was devastated and could hardly speak from heartbreak, she cried for days but found strength when she heard from the oncology team that she was getting better. I had to be strong for my family and I spent as much time in the hospital as possible every day and night as I felt better when I was with her.”
After tests and a biopsy, it was agreed that Aoife, who lives in Dublin, needed surgery to remove the tumor and kidney as soon as possible.
“She then had to have a series of other tests done so the oncologist had all the information she needed before we met,” says Mark. “The oncology team was amazing and spent so much time with us going through everything and listening to our fears. Within days Aoife had an MRI, heart scan and biopsy and when the results came back we met with the surgeon and agreed that based on the location of the tumor the best option was immediate surgery to remove the tumor and kidney . After that her recovery was amazing and within two days she was walking around and then coming home – she’s such a strong little girl.”
After the surgery, Aoife underwent six months of chemotherapy and her devoted father says she is fine now, but she has had a tough time. As such, he would encourage other parents whose children have just been diagnosed to make the most of the support available.
“The treatment was really tough for Aoife, she knew her hair was going to fall out and didn’t have much energy, but she was still her smiling, happy self,” he says. “She continued preschool and started toddlers while still being treated because we refused to let the cancer thwart the plans we had already made. This year she started with older babies and put everything in the past.
“My advice to other parents would be to trust your own instincts and the medical team. Always remember that they want the same result as you. Also give a shout out to cancer support – we found Childhood Caner Ireland very helpful as they are parents who were in our shoes and understood what we were going through.”
Ciara McEvoy can attest to that. She and her husband Stephen live in Dublin with their children Luke, 12, Hannah, 5, Mila, 4, and Lara, 7 months, and last summer their lives were turned upside down when their four-year-old was diagnosed was with cancer.
“We were out and about in Kilkenny and noticed some bruises on Mila’s legs, but she was at the playground so we assumed she bumped her climbing and didn’t think too much about it,” says Ciara. “But when we drove home she kept crying and said her legs hurt, so we thought maybe she was just exhausted from the busy weekend and late nights. But after her bath we noticed more bruises on her thighs and stomach, the so-called emergency doctor who told us to take her to the GP tomorrow morning but give her Calpol and Nurofen in the meantime.
“But within an hour she woke up crying from the pain so we took her to Crumlin Hospital. I remember googling “unexplained bruises” along the way, and when leukemia surfaced, I hung up the phone and tried to banish what I thought was an irrational thought — there was no way on earth my two-year-old could have cancer if she had been walking around a playground the day before.”
Due to Covid restrictions, only one parent was allowed into the hospital so Stephen went home while Ciara accompanied her daughter, who was examined and then sent for blood tests.
“They were asking weird questions so I knew something was wrong and around 3am the doctor said to ask Stephen to come in as they had blood results back. I asked them to tell me if it was leukemia as I didn’t want them to tell both of us at the same time. I had a vision of us breaking apart and startling Mila who was sleeping on my lap, so I called Stephen to tell him to come in – how I didn’t tell him the news over the phone I’ll never know .
“From the moment she was born Mila was our little sunshine, she was always smiling and making people laugh with her funny faces and (when she was diagnosed) I was seven weeks pregnant – life was so good and suddenly everything fell apart together in seconds.”
After the devastating news, the little girl was taken to the theater to have a “Hickman” line inserted into her spinal fluid along with chemotherapy. She also underwent a spinal tap and a bone marrow biopsy.
“The next 24 hours were a complete whirlwind,” says Ciara. “We were given an intensive treatment plan that included a really intensive chemotherapy regimen for six months, followed by a lower maintenance dose for two years, so she’s scheduled to ring the bell in September 2023 (to signal the end of treatment). .
“The first six months included almost 50 overnight stays. Mila has had multiple blood and platelet transfusions and needed help as her blood was not recovering. Also, any rise in temperature automatically means a visit to the hospital, so the bag is pretty packed all the time. Stephen was then preparing for his final exam as an actuary (during initial treatment) and I was pregnant so it was a very tough time – I cried all the way (to the hospital) and back in the car.
“One of the things that really struck me when I first got her diagnosis was the constant physical pain in my chest that I couldn’t explain. It was almost like grieving for the two-year-old I’d lost—although still physically there, she was a quiet, swollen, bald, sick child. I felt robbed of my baby. I have a feeling she went to Crumlin that night and never came out. Sometimes, now that things are getting better, I wonder, is she the same child she would have been if she hadn’t gotten sick, or has cancer changed her?”
The Dublin woman says while things have been difficult and “the concern is always there,” there is light at the end of the tunnel.
“Mila is in preschool now and her hair is coming back wild and curly. She’s the best patient and really got us through this situation when it should have been the other way around,” she says. “Hopefully she won’t remember most of it and it’ll just be a story she’ll ask about when she’s older but for us we’ll never be the same, even a bruise on our other kids scares me.” . And as much as I’m excited for her to ring the bell next year, I’m also terrified that treatment will end and I won’t get confirmation from her weekly blood work to show there is no leukemia there.
“I don’t really have any advice for someone whose child has just been diagnosed other than to enjoy the good days and know that better days are coming.”
https://www.independent.ie/life/family/parenting/childhood-cancer-there-are-no-words-to-describe-how-broken-we-were-41987169.html Childhood Cancer: “There are no words to describe how broken we were”