29th March 2019
It was February 1994. Maya was not yet two and half years old. She had a sore throat and a cold and our visit to our GP was her first one. Maya was prescribed antibiotics and within a few days she had become waxen and lethargic, which was a stark contrast to the bubbly and energetic toddler that she was. The second visit to the GP directed us to the Whittington Hospital. I had taken the morning off work and did not think for a moment that the outcome of that visit would turn our lives upside down. After a first blood test, which the consultant had to repeat because the readings were way off the scale, I was told to ring my husband. It was at this point that I started to get worried.
The extremely worried look on my husband’s face, his agitated state and being ushered out of a busy paediatric outpatient waiting area to a stark ‘family’ room at the end of an unwelcoming corridor, confirmed that Maya had Acute Lymphoblastic Leukaemia (ALL). I knew very little about leukaemia at the time. I knew it was serious and that the outcome was poor for many children.
Whilst still in shock at the speed with which events were taking place, we had to decide whether we wanted to enter a trial. We accepted and were given a detailed program of Maya’s protocol. We were completely unaware as to how invasive the treatment was. Needles were horrific.
I hurt more than Maya did with every invasive procedure and although I was advised to leave the room if it was too stressful, I preferred being there to cajole and comfort her.
Maya was totally traumatised to begin with. Her happy little world disappeared to be replaced with blood transfusions, chemotherapy, lumbar punctures, infections and drips. She was too young to understand my explanations and all she wanted was to go home.
The day came when we were told that Maya was in remission. She was now nearly 5 years old and ready to go to school. I was anxious to ensure that her life would be as normal as possible. She would rarely talk about her time in hospital and I was thankful that I was not made to revisit those days. Maya settled into school very easily, she was a happy child and a conscientious student from an early age. She would volunteer for anything that was offered at school. She was determined and wanted everything. It was as if she was making up for all that she missed during her treatment.
She relapsed exactly 5 years later. She was 7 and half years old. Everything imploded again. All the emotions and turmoil long blocked out of our minds, resurfaced in even greater force because the prognosis for Maya getting over this was so much smaller the second time round. This time, we declined going on the trial as Maya had been selected to go on the lowest treatment the last time and we felt that this was the cause for her relapse. Maya’s understanding of what was going on was comprehensive. We could not hide or sugar-coat anything. She knew that not making it through was a possibility as she saw fellow patients disappear from one week to the next. My reassurances that they had moved and were continuing their treatment at a different hospital were quietly accepted more to make me feel better than because it was the ‘truth’.
Where I could cuddle a two-year-old and comfort her with soothing words and promises of another ice cream or another viewing of ‘Noddy Goes on Holiday’, this time it was a lot more difficult to console her.
Maya had another two years of chemotherapy and at our insistence, she continued on a minimum maintenance treatment for a third year thereafter. She missed a lot of schooling but continued with her learning at the hospital’s school, whenever she felt well enough. Trying to continue with everything she did before her relapse became important to her and we tried our best to make this happen despite her frequent hospitalisation.
When we were told she was in remission again, we did not rejoice. We had heard those words before. Maya’s so-called remission the first-time round was so short-lived that we chose to take every day as another day in remission. There is nothing permanent about a remission in Maya’s case. Now, 20 years later, we may at times allow ourselves to think she has come through this devastating illness, but it is always a short-lived luxury. Other patients were having some sort of a celebration to mark the success of the treatment, in our case, we marked the end of her treatment.
Maya went on to do well at school despite missing a big chunk of schooling. She went to university to study Economics, graduated with a First and immediately after secured a place on a training scheme with KPMG. She has been with them for five years during which she found a niche in Risk and Regulation. She became an assistant manager within three years of working there and has recently been promoted to manager.
Meanwhile, she met Kieran at university, and they got married last September. They have bought their first home and Maya relishes the whole nest-building thing. She is now expecting her first baby, which is due in August! We are totally overjoyed.
Everything Maya achieved was always a double celebration: one for the actual achievement and one because we never thought that she would ever get there. To see her not only do well but to surpass everyone’s expectations is truly amazing. I still pinch myself when I think back at my baby whose childhood was so much in turmoil, is now having her own baby! It’s a miracle.
Leuka is amazing at raising funds for research into the causes and treatments of leukaemia, without their work Maya may not be here today. If you can, please donate to their life-saving research.