'I was 22 and there was no time to freeze my eggs...but now I'm a mum'
Self-portraits of Co Tyrone girl Ellie Louise, now seven, and young mum Lyndsey Hogarth from Lisburn are part of a poignant exhibition by Leukaemia and Lymphoma NI in Belfast's Cathedral Quarter. Karen Ireland hears their stories
Lyndsey Hogarth (27), is a sales assistant who lives in Lisburn with her partner Ryan McGlinchey (28), a postman, and their four-month-old son Rogan. She says:
In July 2011 I felt unwell for several weeks. I had a cough and a chest infection and no energy or appetite.
I was so bad one Friday night that my mum took me to A&E at the Royal Victoria Hospital, where they did blood tests and took me for an X-ray.
The consultant told me I had fluid on the lung, which he initially thought was a very bad chest infection, but realised it was more serious - he thought it was cancer.
I heard the news there and then in the Casualty department. I turned to my mum and we both cried and I called for Ryan and my dad.
The following day I was transferred to the City Hospital, where I had a bone marrow test to determine what type of cancer I had.
Then I found out it was leukaemia and I was given an idea of the type of treatment I needed, as well as the worst case scenario and side effects.
I needed treatment right away and was told it could affect my fertility, but there was no time to freeze eggs.
At just 22 I was devastated - it was something I didn't expect to have to think about.
When the chemo began I was very sick and there were days I couldn't get out of bed - I needed help to get into the shower.
In the beginning someone always stayed with me. My dad took time off work and he and mum were there every day.
I was taking up to 20 tablets a day and they wouldn't stay down, it was dreadful.
My best friend was getting married in October and I was chief bridesmaid - I was worried I wouldn't make the wedding.
So that was my goal - and, in the end, I got out of hospital the week before she got married.
The biggest and worst moment for me was when my hair started to fall out. I was distraught and a hairdresser came in and shaved it all off.
It was horrible and I didn't want anyone to see me - I was so self-conscious.
I was on steroids too, which made me put on weight and I was worried about Ryan and what he would think of me.
But he just told me he loved me and we would get through it together day-by-day.
Eventually I got a wig from Macmillan but, to be honest, I never really liked wearing it unless I was going somewhere special. It was coming into winter time so I always just wore a hat.
I had really low days and thought 'why me?'. I was really upset, but my dad kept me going - he said from the start we all needed to be positive that I would beat it.
When I started to feel a little better in between treatments I was allowed home for a few hours every day and that perked me up. It was lovely to get a home-cooked meal and have a nice bath.
In the beginning I was in a room of my own as I was so sick, and then I got moved out to the ward. I was the youngest one there. I was too old for the children's hospital and too young really for the adult wards.
Early on they told me I was responding to treatment and going into remission. I didn't really take it in, but later dad told me what it meant and that it was great news.
After four months I was allowed to go home and they were able to remove my picc line (indwelling catheter for administering drugs such as chemotherapy). I went back to work a few hours a week to get used to it again. And it took a while to get my life back to normal again, as it had been put on hold.
For a long time afterwards, I worried if I got a cold or cough that the cancer was coming back, but now I try to stay positive and appreciate every day.
Ryan and I had talked about trying IVF, but after a holiday in Lanzorote I came home and realised I was pregnant.
I showed up for one of my routine check-ups with a bump and the doctors said they very rarely saw this happen - but that there was no reason why I couldn't have a normal pregnancy, as I was very healthy.
I was in total shock, but we were both delighted and we now call Rogan our miracle baby.
I wanted to share my story in the hope it could help someone else who is in that place I was five years ago, and to allow them to have hope."
'We know that we are blessed and we cherish her every single day'
Fiona Brown (46) is a nurse from Dungannon who is married to Rodney, a tractor mechanic. They have two children, Ryan (20) and Ellie Louise (7). She says:
My two-year-old daughter Ellie Louise had been unwell for over two weeks with chicken pox. She was running really high temperatures which weren’t coming down with regular medication.
I had a feeling something else was wrong and kept taking her back to the doctor’s surgery. The GP eventually agreed it was going on too long and took blood and urine samples and put Ellie Louise on a course of antibiotics.
With hindsight, had I not pushed for tests it could’ve been a very different outcome. One day her temperature was up to 40 and she was very lethargic so I took her to hospital.
As I was driving there my doctor phoned to say her blood count was very low and she needed to go to hospital urgently.
Even as we were waiting in reception I knew my child was very unwell and was very upset. We saw the doctor and were taken to a ward straight away for tests.
By this stage I’d called Rodney to meet us there and was told the doctor wanted to speak to me. He came in with a nurse — and, as a nurse, I should have known what was coming. We were sat down and told that Ellie Louise had abnormal cells which looked like leukaemia and she was very ill. She had a virus in her throat, her lungs were starting to collapse and her bladder was being attacked. She had a really low heart rate and her body was shutting down.
The doctor said she needed immediate treatment and she was rushed to the Royal Victoria Hospital. In the ambulance with Ellie Louise was every parent’s worst nightmare — she was so sick — and I was in tears. On arrival we were taken to haematology where it was discovered she needed an urgent transfusion of blood and platelets before going to theatre to find out what type of leukaemia she had. Rodney and I were petrified as we waited.
She had Acute Lymphoblastic Leukaemia (ALL) and a programme of intensive chemo treatment of nine months and further 18 months of treatment was laid out for us. Initially she was in hospital for five weeks having bloods and lumbar punctures; she was really very ill and had rounds of chemo and steroids. In the early stages we were taking things hour-by-hour. She was in a critical state.
One night I was staying with her and Rodney had gone home to get some sleep. I looked at her and she was an awful colour and her breathing wasn’t right. I immediately called the nurses who got the doctors right away. They worked with her for two hours to bring her round from a seizure-like episode. We were petrified and really panicking. She had a scan but the episodes continued and at times they stopped chemo as her cells were breaking down which required more medication.
Her gorgeous hair started to fall out but we realised this was the least of our problems. Ellie Louise knew she was sick, but she was a wee fighter and kept everyone’s spirits up.
Her body was pushed to the limits and she has to stay indoors when she was allowed home in case she got a virus. She was on the strictest medical regime possible. Nine months later we could treat her at home and bring her as an out-patient to the hospital. She was still on chemo at home. We were on a long and difficult journey, but eventually she turned a corner. Ellie Louise will be monitored until she is 18 to ensure the cancer hasn’t come back. For now though, she is a very happy seven-year-old who just loves to read and enjoy life. We know we are so blessed that we have her with us and we cherish her every day. There were families we met who had different outcomes and we think about them all the time.
We just wish more money could be poured into research so more cures could be discovered. Earlier research helped save Ellie Louise’s life and for that we will always be grateful. More research is needed, though, to save more lives. We took part in this campaign to help raise awareness so more vital funds can be raised. We had so many prayers and so much support when Ellie Louise was ill and our faith got us through. No one knows what is in store and this has taught us to cherish the moment and not to think too much of the future.”
For further information please visit www.leukaemiaandlymphomani.org