New information!
6 February 2015
It's easier to copy this from my Facebook page, and incase you don't follow along I wanted to share here too:
I have received news from our boys Starship doctor that none of us are a bone marrow match. It has now been decided that Theo and Laken most likely have an as yet unknown syndrome. This is because their recent blood results have been improving slowly. I was told JMML not attached to a syndrome wouldn't improve on its own. All going well if they have a syndrome their leukaemia should be gone before their first birthday! Just need regular blood tests to monitor and make sure this happens. It means their enlarged liver and spleen will revert back to normal and their marrow should eventually start functioning normally. We are seeing a geneticist next Friday to hopefully identify what syndrome they have. Laken still has his open heart surgery ahead because of 3 faults and Theo has 2 faults that are being monitored and should not require surgery (fingers crossed!). Theo does have 1 small kidney and both boys are very small for their age finding it hard to put on weight, have coughs and wheeziness and are developmentally abit behind for their age which all may be symptoms of a lifelong syndrome. Even so they are our much loved and precious boys who we feel are just amazing! We are anxiously hoping that this potential syndrome won't be too challenging for them. Thanks to everyone for your positive thoughts, support, kind words and love for our boys. It has lifted my spirits in private moments.. You are all wonderful. We will always help our little battlers with whatever life throws at them along the way with the help of their doctors, specialists, nurses, family, friends and people like you! I will be sure to update you all on what the geneticist says, and share some pictures and celebrate milestones inbetween ?? so for now we are back to playing the waiting game, this time with more hope about the future.. It's amazing.
