I remember so vividly that first massive black and purple bruise surrounding a lump the size of an acorn on his shin. The questions rushed to mind ‘How on earth did this happen’. The bruising continued over this Queens Birthday Long Weekend 2012 with smaller bruises popping up on the lower half of his body along with irritability, pain, loss of appetite and small blood noses during the night.
On the Monday, our local doctor diagnosed Jack with an ear and throat infection. I questioned about the bruising and blood noses a few times, but no answer. Jack deteriorated over the following days, so off to Albury Base Hospital Emergency Department we went. Along came Jack’s twin sister Ruby. We were seen straight away and bloods were taken. An excruciatingtwo hours later, the doctor, paediatrician and two others call us in. I held my breath. It was explained to me the results of Jack’s blood test. Then came the slap across the face. I was told Jack has Leukaemia and arrangements had already been made for us to fly immediately to the Royal Children’s Hospital in Melbourne for urgent treatment. Totally shocked, I began making some frantic phone calls. Who will look after our girls?
Jack began a 4 week intensive round of chemotherapy immediately to treat this Acute Lymphoblastic Leukaemia T-Cell. Jack was up there on the top of the list as he was a very high risk case. Many theatre visits for Bone Marrow Aspirates, Lumbar Punctures and to insert a Hickman Line for the administration of chemo. Blood test after blood test. At the completion of this round, it was found Jack was not responding. Chemo was not working as well as the Leukaemia Cells had crossed over from his Bone Marrow to his Spinal Fluid. We had a very sick little boy on our hands. How did we go from a healthy blue eyed, blonde curly hair baby boy to an extremely sick 15 month old. We were advised at this point, that a Bone Marrow Transplant was our next step but Jack’s Oncology Specialist wanted to achieve a state of remission first as this gave Jack a better chance of survival.
We then began another round of chemo which incorporated a study American drug which was used on relapse children. This seemed our only hope as standard chemo was not working. Relief came about as this drug worked. Jack was in remission. A donor was found and Jack’s transplant went ahead on February 5 2013. The Transplant went extremely well until a few weeks later when Jack developed a liver disease. Jack became extremely ill again. For me, it all sank in how sick Jack was when we had ‘one-on-one’ care with a nurse 24/7. We were in isolation for about 6 months in the hospital then over at Ronald McDonald House. Then home to be in isolation for another 6 months.
So our little fighter, who barely had 2 days left to live at diagnosis, was resilient to chemo, bashed through a serious life threatening liver disease, and had over 90% chance of relapsing in his second year after Transplant, came through and he now lives to tell the story. Mind boggling really.
And thank you Country Hope!! You were there through the whole ordeal. From your emotional, psychological and financial support network to outings and treats for the kids just to help make this hideous journey a little more bearable.