Cancer is a nasty word, it brings up thoughts of elderly parents suffering, but its not just the elderly that are diagnosed with cancer. My daughter, Leigh-Anne was diagnosed with Acute Lymphoblastic Leukaemia (a type of blood cancer) when she was only five years old. She had always been a poorly child, suffering what seemed like every childhood illness and always having infections, until one Christmas her stomach became distended, her eyes and skin colour took on a yellow hue and her body became covered in a scabby rash.
She was rushed to our local hospital, and after tests we were transferred to St. James’s Hospital in Leeds where she was formally diagnosed with Leukaemia. As parents we were in total shock and just thought it was the end, after all nobody survived Leukaemia did they? We had heard stories about children in Chernobyl being diagnosed with it, but this was something new to us and we did not understand it.
We quickly learnt that although very serious, there was a treatment plan available. It was going to be three years of chemotherapy. However, as cancer cells had also been found in her spinal fluid, this put Leigh-Anne at high risk and she needed to have immediate cranial radiotherapy to help mitigate the immediate risks. This was heart-breaking, watching my daughter having regular sessions in a darkened radiotherapy room, and every day watching her get terrible side effects and begging not to go for more treatment. Knowing that although this treatment was prolonging her life, but also putting her at risk of further problems down the line.
Throughout this difficult period, we also started the chemotherapy regime, but this did not go to plan and Leigh-Anne quickly became very unwell, very fast. One of the main chemotherapy drugs, Asparaginase caused Leigh-Anne to have dangerously high blood pressure and a bleed on her brain which led to a long stay in PICU (intensive care) in an induced coma to give her body time to rest.
The plan going forward was for Leigh-Anne to have a bone marrow transplant as it was just too dangerous to continue with the intense treatment regime as planned. A worldwide search was made of the bone marrow registry, and close family members were also checked, but a high enough match was not found. This is when we found out that stem cells from umbilical cord blood could be used for the transplant and this would be the best shot for Leigh-Anne. We waited patiently while searches were undertaken and as a family we were overjoyed when a match was found!
So the elation was followed by quiet hope as we learnt that Leigh-Anne would undergo doses of chemotherapy and radiotherapy (in addition to what she has already received) to kill off her existing bone marrow. She would have to spend the next few weeks in a clean room as even a simple bug could be fatal. As parents we had to scrub up and wear PPE to enter the room to be with her everyday and we slowly watched her blood counts drop to near zero so she could have the infusion of stem cells.
So here we are on the 8th November. A dated etched on our minds forever. A date when the magic happened. Leigh-Anne lay weak and too tired to notice that she was hooked up to a pump and a thick sticky yellow substance was pumped into her veins. My wife and I sat in total silence in what felt like hours or days, but was only a matter of about 45 minutes as we wondered how this simple infusion could save her from the cancer that had tried again and again to get the upper hand.
Her regular blood checks showed that her counts remained near zero and as the hours turned to days and nothing started to improve, my wife and I sat there every day praying hard to whoever would listen as tears streamed down our faces and we started to wonder if the last year of intense treatment in hospital had all being for nothing. Then as if by magic the counts raised. It was a minute amount, but it was enough to re-ignite hope and allow us think there was finally a chance of getting through this ordeal.
Over the next few days and weeks, over a longer period than anyone could have expected, Leigh-Anne continued to improve. She was finally allowed out of the clean room and was even allowed outside for an hour every day. Something so simple as seeing the sun, the grass, the feeling of fresh air on her face brought immense joy to Leigh-Anne’s face. This simple gift of freedom.
Then we received the best Christmas gift anyone can imagine, on Christmas eve we were given permission to go home for 2 days. That Christmas is a blur of family and friends coming to visit, lots of tears and laughter but best of all the thrill of seeing Leigh-Anne smiling and looking almost well, nearly a full year after being admitted to hospital.
We were back in hospital for further treatment on Boxing day, but somehow this didn’t seem as hard. We now saw a future of fresh hope and determination and no matter what the future held we were going to fight it as a family together.
