Fighting leukaemia

Louisa was only two weeks old when doctors discovered she had leukaemia. Here Louisa's dad, Darren, tells their story.

At first the GP thought it was just a cold, but our new born baby Louisa got worse and worse. She started to get nose bleeds and was up all night.

At just two weeks old she went into hospital and they transferred her to Great Ormond Street Hospital. After countless tests, Louisa was diagnosed with leukaemia; they'd never seen a baby as young as Louisa with the condition. My wife and I were devastated.

By her side

We made sure that one of us was always at the hospital with Louisa, sleeping on a fold-up bed by her side.

We have two other children, Charlotte and Eddie (who were four and two years old at the time) so we alternated our time between Louisa and her siblings.

It was completely surreal. We'd been looking forward to the new addition to our family but our whole world had been turned upside down.

As a family

We tried to keep the children involved as much as possible when Louisa was allowed visitors and were conscious of not excluding them. They missed their mum terribly when she stayed in hospital. It was such a chaotic time.

My eldest daughter, Charlotte, was aware of what was happening, more so than Eddie. She still worries that when Louisa gets ill the leukaemia might be coming back. We have to keep reassuring her that everything is ok.

Immediately after diagnosis, Louisa needed to go to theatre to have a central line put into her heart. I waited for what felt like forever and knew something wasn't right.

It turned out that Louisa had gone into respiratory arrest. She was then transferred to the intensive care unit where she remained for several days.

Words of support

The hospital chaplain was incredibly supportive during our time at Great Ormond Street Hospital. It was such a relief being able to off-load our feelings and concerns onto someone who was independent of our family and the situation.

We knew that the doctors weren't expecting Louisa to survive the treatment as she was so small and young. Somehow we had to keep positive. The Archbishop of Canterbury gave her a blessing on a visit to the hospital. Once Louisa had been blessed I felt that everything was going to be ok.

Treatment

After two months we were able to take Louisa home for the first time after completing her first course of chemotherapy. Sadly she wasn't home for longer than a day before she had to return to hospital for a blood transfusion.

The first three sessions of chemotherapy were not very successful. It was becoming clear that our only hope was for a bone marrow transplant.

Waiting for the results of Louisa's blood counts and searching for a possible match for a donor was a really tense time. When we discovered that Louisa's brother Eddie was an exact match we were over the moon.

The next step

Taking Eddie to the theatre for his operation was really tough because he was completely healthy. With Louisa we had a strange acceptance that she wasn't well and needed treatment; we'd become used to seeing her in a hospital setting.

Using Eddie's bone marrow had been a difficult decision to make and we were terrified something might go wrong. The truth was, we had no other choice to save Louisa.

Little hero

Eddie went in for the operation the day after his third birthday. He saw it as a big adventure and lapped up the attention from all the nurses. Even now he doesn't fully understand what he did for his sister. He will always be a hero in our eyes.

Nine days after the transplant, Louisa's blood count started picking up. After six weeks she was able to come home, in time for Christmas. It was brilliant.

After the transplant

Louisa needed a lot of drugs after the procedure. For six months she had to have nose feeds. We were very conscious of her catching infections. Even now when she gets ill I tend to worry, wondering if there is more going on.

Louisa's a few months away from her five year remission point and doing really well; she's a tough little thing and has an amazing little character.
She still takes antibiotics and will be on them for the rest of her life. There may be issues as Louisa gets older as a result of the treatment.

The future is always looming over us and it comes round so quickly. I often wonder about how it will pan out but we try to make the most of now.

Never lose hope

My message to families going through a similar experience is to never lose hope.

We've tried to draw positives from the time we went through by giving something back. My wife and I ran the London Marathon and have raised over £12,000 for leukaemia charities.

Louisa was involved in a fund raising campaign with Hilton hotels and Linda Robson that raised almost £130,000 for the charity Children with Leukaemia, which was fantastic. It was great to be given an opportunity to put something back and hopefully make a difference.

We are so grateful to the NHS and Great Ormond Street Hospital. Louisa wouldn't be here if it wasn't for their fantastic care and expertise.