'A week after her diagnosis, Lily-Mae had her first chemo'
MY HEALTH EXPERIENCE:Lily-Mae Morrison had just turned four when the sparky little girl was diagnosed with a rare form of cancer
My daughter, Lily-Mae Morrison, is a bright, beautiful little girl who loves dinosaurs and dancing. Always healthy, she had her first temperature at 3½.
Last May, shortly after her fourth birthday and following a sunny, active weekend, Lily-Mae complained of back pain. The GP said perhaps she had a virus, or had banged into something. Her Montessori teacher noticed she was out of sorts and that her mood was low. A week later, her back was really sore and she started to move oddly: sticking one hip forward; rolling sideways to get up; and sitting down awkwardly.
My partner, Leighton Morrison, brought her back to the GP who sent her immediately to University College Hospital in Galway for tests. To our surprise, the hospital doctor detected a murmur in Lily-Mae’s heart and admitted her. The next day Dr Edina Moylett, a paediatrician, said Lily-Mae’s white cell count was too high to be caused by a virus and she suspected some malignancy. An ultrasound showed nothing sinister in her organs but Dr Moylett looked at the scan and did an MRI, and said Lily-Mae had a tumour in her soft tissue.
Leighton and I were taking turns to be with Lily-Mae and he was at home with our two-year-old son, Evan, when the doctors said they had bad news and wanted Leighton to be there. I went out to the car park and screamed my head off. I couldn’t look at Lily-Mae. I couldn’t touch her. I couldn’t do anything. I was in a state of complete shock. My mother, Sheelagh, was with us when the doctors told us the tumour had grown from Lily-Mae’s left adrenal gland to occupy the space between her organs and her spine, measuring 13cm long by 7cm wide by 6cm deep. They said it was almost certainly neuroblastoma, a rare and aggressive form of cancer that had developed only in the previous three months, and that we would have to bring her to Our Lady’s hospital in Crumlin for full diagnosis and prognosis.
On Monday, in Crumlin, we met Dr Michael Capra, an oncologist; the next day he confirmed Dr Moylett’s diagnosis and ran more tests. Neuroblastoma occurs only in children under five, and those who contract it before 18 months have the best outcome. Children at stage 1 of the cancer respond well to treatment. Dr Capra told us Lily-Mae was at high aggressive stage 4, with secondary and third cancers away from the original tumour; the secondary was 100 per cent bone-marrow cancer and the third was significant skeletal cancer.
Our sparky Lily-Mae was pale, listless and vague, in marked contrast to Leighton and I, who were beside ourselves. We had two options: a two-year programme of aggressive treatment; or a course of palliative chemotherapy, which would make Lily-Mae comfortable but would not treat her and so, in all likelihood, she would die within three weeks. “I want to bring her home and let her go,” I said. “I didn’t bring a baby into the world in order to torture her.”
The next day, we decided to go ahead with the treatment. Dr Capra warned us that about 70 per cent of children relapse during or just after the two-year programme. It begins with 80 days of induction chemotherapy; three or four days of it every 10 days.
The next day, a week after her diagnosis, Lily-Mae had her first chemo and within two days she was much more like herself despite having, in the first 40 to 50 days, an infection every other week, blood in her urine, fluctuations in her temperature, nosebleeds and E.coli. I hugged her close as we slept together in hospital. “Mummy,” she’d say, “you and me are like a jigsaw, sticking together with glue.”
After a month, we moved home to Co Galway and started to commute to Crumlin for four to five days at a time. Every night we are at home, Lily-Mae sits calmly for an hour while we give her up to 15 drugs and supplements through a nasogastric tube. She can eat tiny amounts, but the chemo has removed most of the lining of her throat, so most of her calories come from a night feed through a tube.
After the first 80 days, Dr Capra was pleased with her progress: the tumour had reduced by half, and the cancer had gone from her bones.
Things were different on the next chemo, TVD, which is given monthly. She started school in September but she has only a couple of hours’ energy a day and she has lost her hair. We hope this treatment will remove the cancer from her skeleton: then, before surgery to remove the tumour itself, her blood levels have to be right; an MIBG [meta-iodobenzylguanidine] scan will show how many hotspots remain; and as the tumour is so brittle and cement-like, it is difficult to remove it all. Every night, Lily-Mae has a GCSF [granulocyte-colony stimulating factor] injection to harvest stem cells that would enable her bone marrow to be rebuilt if the surgery is successful. After six weeks’ isolation, she would have radiotherapy to kill the remaining bits of the tumour.
Lily-Mae’s biggest hope, after enduring two years of this, would be immunotherapy, but she cannot have that in Ireland if she has more than four sessions of TVD. It is still on trial in Europe but is available at great expense in the US. It involves giving a child antibodies that would reject new neuroblastoma cells, increasing their chance of survival after a relapse to 50 per cent.
Being Lily-Mae’s primary caregivers is overwhelming us. Our lives are on hold and we have no schedule. We are self-employed but cannot work. There is no escaping the heartbreak. I can’t sleep, I have panic attacks and I wonder how I will manage to look after Evan. I can’t think about the future. All I can do is learn as much as I can about Lily-Mae’s condition and keep up to date with the research and with other parents in similar positions. As long as I can fight, I feel I’m doing something. Lily-Mae’s spirit inspires us. “I don’t have a tumour,” she said recently. “You people have got it completely wrong.”
The Sunny Mae Trust is raising money to support Lily-Mae’s family and to fund research into neuroblastoma. On November 24th a single, Tiny Dancer, featuring Paddy Casey, Tom Dunne, Mary Black, John Spillane, Kila and a 250-strong choir, will be released and all proceeds will go to the trust. To donate, see idonate.ie/lily
In conversation with JOYCE HICKEY