MY HEALTH EXPERIENCE: Our world was turned upside down when tests confirmed a brain tumour, says EILEEN CROWLEY
NOT LONG after the Christmas holidays, our youngest child Dillon (Christy and I also have Bryan, aged 14, and Emer, aged 12) started complaining of feeling sick – he was throwing up every now and then over the course of a few days, so I decided to take him to see my GP.
The doctor did a few tests, but wasn’t certain about what was wrong with him, so referred him to Tralee hospital for an assessment. They did a routine scan and then told us they wanted to send him to Our Lady’s Children’s Hospital in Crumlin.
We were shocked by this as it seemed very serious, but everything was happening so fast that we hardly had time to think. Dillon was transferred there and then, and once we arrived in Crumlin, he was given a brain scan and afterwards we were told that our little boy had a brain tumour.
It was the most devastating news anyone could hear. Our world had been turned upside down and we couldn’t really take it in. But we all had to be strong for him – he was only eight years old and was going to have to have surgery and lots of treatment, he would need so much support from us.
Bryan and Emer were also very worried about him as they knew how serious his condition was, but they were great really and acted very maturely.
Luckily for us, children are never kept waiting when it comes to cancer surgery and Dillon was booked in immediately – we went from initial diagnosis to operation within three days.
Throughout this huge ordeal, Dillon was so brave. He didn’t ask any questions about what was happening to him and just went along with everything he was asked to do.
After being prepared for surgery in Our Lady’s, he was transferred to Beaumont for the operation (all kids needing operations on the brain must go to Beaumont).
This was a hugely stressful time for us all. Christy and I were waiting in the hospital while the other two were being looked after by family in Kerry.
Brain surgery is very invasive and Dillon’s operation involved many hours of careful work removing tissue from the brain. It was a very delicate procedure, ensuring at all times that the motor function of the brain was kept intact.
After the operation, he spent a couple of weeks recovering before heading straight into six weeks of combined chemotherapy and radiotherapy treatment.
He stayed in Crumlin during this time, but was taken to St Luke’s every day for his treatment. This was very hard on him after all he had been through, but he still had a smile on his face every day.
When the doctors told him that he would lose his hair, he laughed and said it would save the hassle of going to the hairdressers for a while.
Throughout the months of his initial treatment, Dillon kept a brave face on it, but sometimes it was very hard on him. He loves sport and really missed playing football – he also hated not seeing his friends or his brother and sister.
But there was more to come.
When he finished the radiotherapy and chemo at St Luke’s, we were then told that he had to have four bone marrow transplants, one each month from June onwards, and we knew this would be really tough on him. It is the ultimate treatment for brain tumours, but it can be really hard going.
After each transplant, he had to stay in isolation for 10 days and could only look at the rest of the family through a glass panel.
I know he felt really isolated and would have loved to have friends to talk to, but he still didn’t complain.
Dillon has spent almost the whole of 2011 in hospital and when he did spend time at home, he had to have regular check-ups in Tralee.
Almost 12 months has gone since he first became ill and I can’t believe the journey we have all been on. Our lives changed overnight and every minute of the past year was spent worrying about Dillon’s health.
The tumour is gone and he is now on the other side of his illness.
Although he will continue to be closely monitored in the new year and into the future, he is being discharged from Crumlin and we cannot wait to have him home.
There is huge joy in the Crowley household at the prospect of our little man coming home for Christmas. Bryan and Emer can’t wait to see their extremely brave little brother and he is so excited to be with them again.
We will be putting up the tree when he arrives and, I can tell you, there will be no Christmas present better than seeing his face at home in Kerry on Christmas morning.
In conversation with Arlene Harris
Bone marrow transplant: When is it needed
Although it is a very intense treatment, bone marrow transplants are hugely beneficial in treating brain tumours, says Dympna Cawley, assistant director of nursing at Our Lady’s Children’s Hospital in Crumlin (OLCHC).
“The goal of a bone marrow transplant is to cure many diseases and types of cancer. When a child’s bone marrow has been damaged or destroyed due to a disease or intense treatments of radiation or chemotherapy for cancer, a marrow transplant may be needed,” she explains.
“On average, around 30 bone marrow transplants are carried out at OLCHC annually. This has almost doubled in 2011, due to new clinical trial protocols involving more BMTs for
each patient with better outcomes.”
A bone marrow transplant can be used to:
Replace diseased, non-functioning bone marrow with healthy functioning bone marrow (for conditions such as leukaemia, aplastic anemia and sickle cell anemia).
Replace the bone marrow and restore its normal function after high doses of chemotherapy or radiation are given to treat a malignancy. This process is often called “rescue” for diseases such as lymphoma, neuroblastoma and breast cancer.
Replace bone marrow with genetically healthy functioning bone marrow to prevent further damage from a genetic disease process such as Hurler syndrome and adrenoleukodystrophy.
