Today is the worst day of my life. Every year as we enter January and the 18th January creeps closer and closer I feel physically sick and full of dread. I wake woolly-headed from a broken nights sleep as another anniversary comes around. You would think this anniversary would fill me with joy, after all my daughter is still very much alive, but it is the date my wife and received the news that any parents dread, the news that our daughter had cancer.
She had always been a poorly baby. She was born with a dislocated hip, meaning she spent the first months of her life in a special harness. She was always poorly, she suffered infection upon infection until December 2006 when she became very unwell. She was covered in marks all over her body, the doctors didn’t know what these were, she had a distended stomach and yellowing off the eyes. We had a difficult Christmas, nobody knowing exactly what was wrong with her, until the start of January when she was so lethargic we insisted the doctors do something.
As we were living in Bridlington at the time, we are sent to the children’s ward at Scarborough hospital for tests, and more tests. As parents we knew something was wrong, but it wasn’t until we were told she was getting transferred to St. James’ Hospital in Leeds did we really start to panic. We received reassuring words from the doctors and nurses at Scarborough hospital, but deep down we knew something was wrong, something was really wrong.
We didn’t know it at the time, but we were put on Ward 10, a specialist cancer ward for children. Being called immediately into a doctors office we were told the news that broke us into pieces. Our precious little girl had been diagnosed with Acute Lymphoblastic Leukaemia, a rare blood cancer and if she didn’t receive urgent treatment she would only have a few days left. A new chemotherapy trial was offered to us and we accepted it without really understanding what it meant.
We were told that the initial plan was for her to receive high doses of chemotherapy to get her into remission and then she would be on two years of maintenance doses to keep the cancer at bay.
The next step was lumbar puncture, this was done under sedation and several drops of spinal fluid were taken to be checked. The bad news kept on coming. Because cancer cells were also in her spinal fluid, she was now classed as high-risk and she would need immediate radiotherapy to her skull to prevent the cancer passing the blood-brain barrier. Radiation always scared me, and the fact that high doses were going to be fired at my daughters skull scared the life out of me, but I knew it was needed to save her life.
After 24 hours vigils at her bedside by my wife and I over several weeks, we were told by the nurses we were going to burn out. We were ordered off the ward and told to take a couple of hours away. Sadly, this was the day she had a chemotherapy drug called Asparaginase and this is known to have nasty side effects, and it certainly did. As we sat at Eckersley House, the home from home for parents with children in hospital, we heard the family phone ring. We were the only ones there. My wife and looked at each other and we just knew something was wrong. I shakily picked up the telephone handset to be told we had to return to the ward, and urgently.
My wife and I ran as fast as we could, dodging people on the corridors and entered the ward to be greeted by staff who took us to the ‘treatment room’ where we found Leigh-Anne unconscious, and several doctors and nurses over her. Nurses worked way past their shift as they used jumbo syringes, bigger than I had ever seen to inject saline into her. We were told the pump machines could not work fast enough to counteract the dangerously high blood pressure and the bleed on her brain. The what? – Yes we were told she had a bleed on her brain and at the point they didn’t know how serious it was and we had to prepare for the worse.
The next couple of weeks are an emotional blur. Leigh-Anne was in paediatric intensive care, or PICU as it was called by the staff. She was in a coma with a machine doing her breathing. Surrounded by her teddies we didn’t know if she would ever wake up. By this time is was February and her birthday, she drifted in and out of consciousness. We bought her some balloons and tied to them to the bottom of her bed, but we had to take them away as she thought these were monsters coming to get her in her half-conscious delirium.
Finally as she came around, we hoped for some good news. She was put on low doses of chemotherapy, carefully avoiding the one that landed her in intensive care while the medical team decided on what was next for Leigh-Anne. We were again summoned to the doctors office, we were sat and told that the only way to save our daughter was a bone marrow transplant. This is where high doses of radiotherapy and chemotherapy kill off her existing bone-marrow and then, through a drip she would receive life-saving marrow. We were told at this stage, even a simple cold could kill her.
Immediate family members undertook blood tests, but not even my wife and I were a high enough match. To make matters more complicated, Leigh-Anne would be a difficult match and in fact a worldwide search of the Bone Marrow Registry yielded no results, it seemed that despite months of heartache, worry and fighting we were on a losing battle and the cancer was going to win.
This is when we heard that blood from umbilical cords are rich in stem cells and these can be used in the exact same way as a bone marrow transplant. Cord blood storage is rare across the world and my wife and I found it difficult to stay positive. But it wasn’t long before we were called into the doctors office again. As my wife and I prepared ourselves for more bad news, we were overjoyed to hear that two matches had been found, one in London and one in Australia and both were a 6 out of 6 match!
So this was it. We had to spend weeks in a ‘clean’ room in the transplant unit at the hospital. We had to scrub-up and wear protective equipment every time we entered the room. After guidance, the doctors were able to give her doses of chemotherapy and radiotherapy and then we had to wait and wait until her counts dropped to zero. Then we watch as a special canister was delivered to the hospital that contained a small pouch of yellow coloured fluid. We were shocked and amazed as this small pouch was attached to a drip stand and was slowly infused into Leigh-Anne through her central line.
Patience was now needed, as day by day we watched her ‘counts’ not move, they were stubbornly hovering around zero and we again thought that despite everything we had gone through, cancer was going to rear its ugly head one more time to get revenge for fighting it. Days passed and slowly, out of nowhere, Leigh-Anne started to feel a little brighter and with each passing day she got a little stronger and her counts started to rise.
On Christmas Eve, nearly a year as an in-patient, Leigh-Anne was able to go home. Our very own Christmas miracle.