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Kayla had her check up this week and all her blood counts were perfect. I have never really written about how Kayla's Leukemia affected me. I have never really admitted to myself she had "cancer". I find this word so hard to swallow, so definate. Yet, so many people know someone with the disease and it scares me. At least Leukaemia has an association, a treatment, something that is temporary. I am happy to say it has been a year and a half since her diagnosis and that little girl is a bundle of energy and you would never guess what an ordeal she has been through.  Kayla during treatment in 2005
Here is my memory of our ordeal. When Kayla was 10 months old small unraised spots - petechiae - appeared on her neck and started spreading, really slowly. I just felt there was something not right even though she seemed well and the doctors didn't seem concerned. Her yearly check up which was recommended for all Down Syndrome (DS) kids showed her platelet levels were extremely lower than normal so that afternoon our doctor rang us and asked us to go to the children's hospital straight away. Everything moved so fast. The haemotologist took her blood and told us that is could be an autoimmune disorder, a virus or worst case scenario - Leukemia, we just crossed out fingers and waited. Her Dad (Adam) started doing his homework, speaking to people especially in the DS Association as there is an incidence of Leukemia 15-20 times higher than the rest of the population. I was scared but just hoping for the best, Adam was educating and preparing himself for the worst. A week later when the first two options were ruled out, they called us back for Kayla to have a bone marrow test. Here was our little girl now going in for surgery to find out if she had cancer. And then the waiting...she had to come out of the anesthetic and seemed ok and then the doctors finally came to give us the diagnosis of Acute Myeloid Leukaemia (AML). She had to start chemo straight away and get a central line inserted through her chest into her veins to admisiter the drugs and so it began. How...why...all the questions started rolling in. Thank goodness for the wiseness and experience of the wonderful oncologist, Dr Mary Bergin. What a marvelous, straight-up, down-to-earth woman who told us what to expect. No-one can really prepare you and calling the family to tell them was so hard and made it feel so real. If it wasn't for the support of our wonderful family and friends who came to visit and cooked us meals and gave us well wishes, I don't know how we could have coped. Everyone told us they don't know how we do it and be so positive, but really what choice do you have? You need to believe things will get better and let me tell you we had some bad days when you really had to test that belief. Just talking about it again now leaves me wondering why her. Kayla had about 20% Leukemic cells in her bone marrow and after the first dose of chemotherapy she went into remission straight away left with only about 5% Leukemic cells then 0% after dose two. We were given a six month schedule developed specifically for DS kids with AML using a concoction of many different toxic drugs and were told her chances of total remission were good. Just the fact we were talking about survival rates and seeing kids in the rooms next door in relapse or undergoing bone marrow transplants was really scary. It hit home pretty hard but we met some great families who we still keep in touch with and shared our room during her first chemo round with a family of a one year old girl with a tumor who looked so well so it was a positive start. Adam and I just kept tag teaming the overnight stays over the six months as sometimes we were in there for two weeks at a time till her blood counts were high enough to get her home. Mum helped out and stayed so we could get a break and actually see each other but it was draining. Chemotherapy kills off your whole immune system in order to kill the leukaemic cells. It was a shock Kayla actually coped fairly well to the treatment and didn't suffer from side effects like vomitting or diarrhoea, or mouth ulcers, and didn't even lose all her hair but she was on medication to prevent them, so I guess they worked. She developed many infections through her central line when at 2am we would have to rush to hospital with a fever of 38 degrees C. Yes anything over 38 meant come straight to hospital for 10 days of antibiotics. Here was a kid who had never even had antibiotics and a mum who didn't like vaccinations due to the mercury content and negative effects and here now we were surrounded the most toxic of drugs - where is the sense in that! As I found out I was pregnant on Fathers Day a few weeks later I had to wear double thick gloves when changing her nappy so as not to absorb the toxic drugs through my skin. As for the pregnancy, that was the last thing on my mind and thankfully I was well. Kayla had play group, music therapy, physio and her early intervention team even came to the house when we were home and up for some therapy. She seemed to enjoy the attention and was quite demanding of it when we got home. But it was resally her smile that got us through it all. We had lots of tears and found new friends and tested our beliefs but we are all here to tell the tale and share our thoughts with others who might be affected by cancer in some way. The Cancer Council of Australia http://www.cancer.org.au/content.cfm?randid=502435 says "at least one in three cancer cases are preventable and the number of cancer deaths could be almost halved by the implementation of effective cancer prevention programs. More than 15,500 cancer deaths each year are due to smoking, sun exposure, poor diet, alcohol, inadequate exercise or being overweight." This reality check of our lives make you more grateful of who you surround yourself with. Appreciate every moment and tell the ones around you how much you love or respect them. |
