finding a match – an update

I thought I would do an update on how my mum is going, and to also spread the word on becoming a bone marrow donor.

Before I start, I want you to know I’ve attempted to write this so many times but struggle to find the right words.  I’m a pretty private person.  So determined not to just sit here, I’m going to share my mums fight with cancer and hope that by doing this more people will join the bone marrow registry OR help spread the word.  The more people that are on the list means the more chances there are of finding a match.

A couple of days after my last post on 18th November mum started her 6th round of chemo, she developed yet another infection and ended up in more intensive care.  The only thing she could do was fight and for those of you that know my mum know she’s a fighter and has been her whole life.  After some of the worst weeks of her life she underwent surgery to remove an infection that had developed in the back of her leg.  And then 2 days before Christmas she was allowed to go home.  On a good note we had a beautiful Christmas and New Years and she was so happy to be home and with her family.

Back on the 16th December her doctor told her there wasn’t a donor match for her on the Australian registry, it was extremely disappointing for mum and all of us.  Now they are looking outside of Australia in hope of finding one.

They have stopped her chemo because she isn’t recovering from it and she will now stay at home – and wait.  We wont give up hope – there has to be a match out there somewhere.

Her oncologist believes with a transplant she will have a 80% chance of recovering from ALL but without it her chances of surviving it are very small.

This time last year Leukemia was the furthest thing from our minds and it never once occurred to me to become a bone marrow donor, I have donated blood plenty of times but I really didn’t know anything about donating bone marrow.  So I’m hoping by posting this more people will want to help – not just my mother but so many others out there that need a transplant now or in the future.

You can join the registry if you are between 18 and 40 years of age and in good health.  Here are some links for more information…

Australian Bone Marrow Donor Registry  – Donor FAQS

Australian Bone Marrow Donor Registry – How to join

 

Thank you x

 

 

This is my Mum.

I cannot begin to describe how amazing this woman is and how much she means to me – my brother & sister, her parents, her husband  – our whole family and everyone else she has touched with her love and generosity.

On Monday the 6th June 2011 she got up and got dressed for work just like any other day.  Except, she wasn’t feeling well.  When she got to work her boss took one look at her and told her to go to the doctors but they couldn’t fit her in so she went to emergency.  Blood was taken and she was admitted.  The next day she had a bone marrow biopsy, and then on Wednesday she was diagnosed with Acute Lymphoblastic Leukaemia (ALL).  On Thursday she started her first round of chemo and if it couldn’t get any worse, all of the stress on her body caused her to suffer a heart attack on the Sunday.  We were all in a state of shock.  We couldn’t do anything to help her except be there and support each other.

That week her life changed forever.  Her treatment is aggressive and so horrible you wouldn’t wish it upon anyone.

She has now completely 5 of her 8 rounds of chemo and needs a bone marrow and stem cell transplant to survive – the reason I am writing this.  Her brother and sister unfortunately have been tested and were not a match so an unrelated donor is her ONLY chance.  The probability of finding an unrelated match is 1 in 20,000 to 1 in 100,000. But it is definitely better than not finding a match at all.

This week I will be joining the list, I will not be a match for my mother but I could be a match for someone else’s.  So join me and my cousin Mellissa and become a donor – you just never know who you could be helping.

My great uncle who also has Leukaemia has just had a bone marrow transplant and his donor was a 25yr old woman living in WA.  My cousin’s wife in Thailand has Aplastic Anemia and desperately needs a transplant to survive.

Please help spread the word, there has to be a match out there somewhere.

 

Information about how to join the bone marrow registry and becoming a donor click HERE

or you can call the Australian Red Cross Blood Service on 13 14 95.

 

Kelly

 

20 thoughts on “finding a match – an update

  1. Jeanette says:

    Hello Kelly,
    I stumbled onto your blog through Creative Live and the ALL tag caught my attention. My 9 year old niece whom I’m very close to was recently diagnosed with ALL. My thoughts and prayers are with you and your family as you go through this difficult time. I will pray you find a donor for your mother. Thank you for sharing this personal information about your Mum.

    Sincerely,
    Jeanette
    California Photographer

  2. Brian Porteous says:

    I am curious as to what hospital/medical facility diagnosed and treated her. I received a bone marrow transplant this summer from my partially matched sister. In fact, they told me that both my parents, my sister, or my children could potentially be used as donors. My sister was the best available related match, but not a complete match. Johns Hopkins Hospital in Baltimore, MD has pioneered the half-match donor protocol with alarming success. I had my transplant there and I am living disease free only 4 months later.

  3. Kerri Hewitt says:

    Kelly

    I have know and loved your mum for years and am devestated that she is so sick. I am also too old to register with the bone marrow register, but if there is anything that I can do to help Susy, please let me know and give her my love and tell her I am thinking of her and praying for her recovery.

    Kerri

  4. Tracy Dickason says:

    Hi Kelly,

    I have just had a look and unfortunately I am too old to donate. I am so sorry. I have linked to this page on Facebook and will encourage everyone to spread the word as best I can.

    Please know you an all on me any time if you need help with the kids or just to have time out.

    Take care of yourselves as best you can.
    With love to all of you and especially your Mum.
    Tracy

  5. Rachel Brooks says:

    Kel,
    I hope there is a match out there for her. I am registered on the list and donated peripheral stem cells to a man in Germany about 2 yrs ago. He had even held on for 2 yrs to get my donation due to my pregnancy. He went into full remission. Good luck!! Thinking of you and your family. xx

  6. Caroline Fogg says:

    What a beautiful post. Your mum is amazingly beautiful.

    I wish I could join the lis but unfortunately I am not able due to a condition I have (nothing like your beautiful mama thankfully) but I will be re-posting and spreading the world.

    My best wishes to your mum and your family xx

  7. Naomi says:

    Oh Kelly. Thank you for sharing your Mum with us. She is a beautiful, brave, strong amazing woman. I would also like to know how to join the list xx

  8. cousin Steve says:

    You know we are alongside you on this one Kel, lets hope Christmas 2012 we can get Sue and Kung together and have one massive party. Xxx

  9. Jennifer Gillham says:

    Kelly,
    My heart aches for you and your mums predicament. I know only too well the pain of having someone with this exact disease. I had twin daughters and 1 got this hideous disease at just 28mths old. After 3yrs of treatment she relapsed & a bone marrow transplant from her twin was ordered. Alas, we were too late. Her disease was too advanced for a transplant to work.

    I urge everyone to register on the bone marrow donor list. Time is of the essence and people need our help.

    Thinking of you and your mum
    Love Jennifer.

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