Our identical twins Theo & Laken have Juvinille myelomonocytic leukaemia, they have a big journey ahead!
Nationwide
Our identical twin boys Theo and Laken were born on 7th September 2014 at 34weeks with a rare cancer called Juvinille myelomonocytic leukaemia. It's so uncommon that they are the only twins in NZ both with it and also probably the world!
JMML accounts for about 1% of all childhood cancers. They are two little brothers to Aslin, Kade and Oaklee, and we are busy trying to do everything we can for our boys who's only hope is a bone marrow transplant. Having two babies with cancer is this mums worst nightmare.. Every bit of support helps and is appreciated! Thank you. You can follow their journey on Facebook "Theo and Lakens JMML journey" where I post lots of cute pictures and updates every day or two.
On the 15th of December at Starship hospital Theo and Laken had their bone marrow aspirated which has been sent off to California for comprehensive testing. We also tested ourselves and our two year old daughter to see if we are a bone marrow match for our boys, we are crossing all our fingers and toes that one of us is a match so we can get the transplant started as soon as possible!
We have just learnt this week (5th feb) that our boys most likely have a syndrome, so will be seeing a geneticist to try and figure out what we are dealing with!
Mr Laken is also going to need an open heart surgery so we have that coming up in the not too distant future.
Thanks again to everyone for the support, it's truly amazing!
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.
Your message will be displayed on the page and emailed to the donor.
Your new message will also be emailed to the donor.
Saving a blank entry will delete the current comment.