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Elyse's battle to beat PNH & MDS Blood Conditions

  • A update From Elyse And Mike Crawley

      23 January 2016

    I received this email today from Elyse and Mike

    Hi all

    So it's been an event filled week or so

    It's started with last Friday 15/01/16 transplant day 0

    The day went really well it was just a whole lot of stuff pumped into Elyse while we watched. We had been warned it was to be a bit anticlimactic! We are just happy to start counting up to 100

    This is a post from the amazing woman we all care for so much. She wrote this in her hospital bed thinking about helping others.

    Today is the big day... Transplant day! Day 0 of 100.

    I want to use today to encourage at least one of you to give a helping hand.

    As you all know my father is my amazing donor. But what you may not realise is that being one of my parents, he is only half a match. This obviously lowers the chances of a successful stem cell transplant.

    There is a world wide registry with over 25 million people on it. Being European I had an 80% chance of a match. But unfortunately there was none. And it's worth mentioning that there are other races with much lower odds.

    So today I'm asking you to at least think about putting your hand up. Every case will be different but it's not as daunting as you may think. If you can get over the use of needles for a few days then you don't have much to fear. And trust me.. Fears can be overcome.

    To those who offered me their own bone marrow. THANK YOU. Words can not express how it feels to get an offer as big as that. I am incredibly grateful, it gets me teary just thinking about it. Please think about helping someone else out. You may not know them but how great would it feel to save someone's life.

    I understand that this is asking a lot so I'll give you a bit of an out.. Go donate some blood instead. I'm going through my fair share.

    Help me replace it.

    Thank you again for the continuous support. Love to you all xx

    That is the girl we all know and love!

    So from there we have had a couple of days of chemo with a huge amount to fluid (8 litres a day). Imagine trying to drink that much! The fluid was what made it the most uncomfortable for Elyse, many many trips to the loo.

    The day after chemo Elyse had 3kgs of extra water on board and had some medication to help rid her of that. (More trips to the loo).

    Today we start trying to get Elyses new stem cells working with some new drugs! It's going to be a bit of a waiting game of which we know very little.

    A friend of Mikes, Josh Moffett set up a 'give a little' page for us.

    We were pretty uneasy about setting one up but thought it gave people a chance to help us out if they felt they wanted to. We have been blown away by the extra support. We never expected people to give us hard earned money we are so humbled by this! They total was up to $7,525 last check. Absolutely amazing. So thank you so much to those who have donated in this way.

    While we are blown away to receive such kindness we would love people to consider becoming a donor of blood, plasma or platelets and maybe get your name down on the bone marrow register. It's not easy but this is Elyse's wish to help replace what she has used and to help others in her position.

    Gareth from mediaworks (local radio) contacted Josh Moffett our 'give a little' page creator to ask some details as they want to do a small radio ad for her!! on their radio station through out Wednesday morning. They also reiterated the message from Elyse to please donate at NZ Blood!

    Once again a MASSIVE thank you to all!! The kind thoughts and the

    lovely messages. We have been once again floored by the amount of

    support we have received

    Love to you all

    Elyse & Mike

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  • Blood Donations

      20 January 2016

    Thank you for all donations given they mean a lot to the family.

    With Elyse going through this ordeal with chemo and having low red and white blood cells and needing quite a few blood transfusions, there being no full tissue type matches on the NZ Bone marrow register the family would like to promote / ask people to join the NZ blood service and donate blood, plasma and also consider joining the bone marrow register.

    www.nzblood.co.nz

    Once again thank you for all the generous donations And go Elyse Keep up the great work, love what you are doing

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