Leukaemia research and the memory of a friend

Discussion in 'Community' started by mj_1903, Apr 18, 2005.

  1. mj_1903 macrumors 6502a

    mj_1903

    Joined:
    Feb 3, 2003
    Location:
    Sydney, Australia
    #1
    The post that bumped the thread

    Written 18-4-2005:

    I'm sorry if this feels wrong to you but I am rather emotional right now.

    Today we lost a colleague and a dear friend of mine to Leukaemia. We have decided to donate all our sales to Leukaemia research in a bid to stop the needless suffering of the children and young adults who are afflicted by it each day.

    This is a link to methods of donation and my friends story.

    Yes she was a Mac users although she only switched this year. Without her PowerBook though she may not have made it through the months of isolation. Her iPod, and the music it contained, also brought her immeasurable joy especially near the end when she could not move, talk or breathe.

    Thanks in advance to anyone that makes a donation, you are helping turn our losses into the gains of others and her suffering was not totally in vain.
     
  2. mkrishnan Moderator emeritus

    mkrishnan

    Joined:
    Jan 9, 2004
    Location:
    Grand Rapids, MI, USA
    #2
    I'm so sorry for your loss! I volunteer at a camp for chronically ill children here in the US, and I fell in love with a bunch of the kids from our cancer group a few weekends ago. Some of them have leukemia, so I got to learn a little from them about what your friend must have experienced. When I hear songs on my iPod from artists I know they liked, I think of them, and sometimes it makes me cry. And I know the internet has helped them too -- one family uses caringbridge to communicate the story about their son.

    I think you're doing a great thing to make this memorial for her. I am sure she appreciates it from the place she's gone to. I've heard of some of your programs too, for what its worth. I'm so glad that you're doing this to remember her.

    By the way, I think you should put a splash page on your site at the beginning, about the power you describe of computers to help people through their difficult times. It would be a great testament to your friend, and help people appreciate why people like you develop the technology that you do....
     
  3. stubeeef macrumors 68030

    stubeeef

    Joined:
    Aug 10, 2004
    #3
    I'll be grabbing the reciepe program this afternoon, gotta get my 3 daughters to the school bus.
     
  4. mj_1903 thread starter macrumors 6502a

    mj_1903

    Joined:
    Feb 3, 2003
    Location:
    Sydney, Australia
    #4
    Thanks for the kind words although it is making me want to cry writing a reply.

    I normally escape into my music when times are tough but Rae and I shared the same interests in music and many songs evoke memories of her. Being 20 and never having been through anything like this before, your experiences really do help me feel better.
     
  5. mkrishnan Moderator emeritus

    mkrishnan

    Joined:
    Jan 9, 2004
    Location:
    Grand Rapids, MI, USA
    #5
    *Big hug* from across the ocean.
     
  6. vieoray macrumors regular

    Joined:
    Feb 18, 2005
    #6
    i'm very sorry for the loss of your friend. it sounds like the world lost a good person :(

    since i don't live in australia, i will do as your page suggests and will purchase a copy of netflix freak. it looks cool and something that will be useful to me as i do use netflix often.

    i'm sorry, again. hang in there. you're doing a good thing in your friend's honor here.
     
  7. Bad_JuJu macrumors member

    Joined:
    Apr 17, 2005
    Location:
    North of Kalifornia
    #7
    Very sorry to hear of the loss of your friend -- I suffer from one of the other blood cancers -- but very lucky as is it treatable.

    Glad she was able to get some relief from this technology we all create

    Like any person with cancer ---- I view every month and year as a crap shoot --- enjoy every day
     
  8. camobag macrumors regular

    camobag

    Joined:
    Nov 4, 2003
    #8
    I'm very sorry about your friend. My good friend had lymphoma and luckily made it through alive. I can relate, though, as I went through a lot helping her through it.
     
  9. pseudobrit macrumors 68040

    pseudobrit

    Joined:
    Jul 23, 2002
    Location:
    Jobs' Spare Liver Jar
    #9
    I'm incredibly sorry to hear about your loss. It's a very touching story, and she sounds like a wonderful person.

    Your donations are above and beyond what I've ever seen from any other company (usually they donate net proceeds or a percentage of sales), and you all are to be commended for such an effort.

    Being a Three Mile Island baby myself (I was a 5 month-old fetus; if the winds had been blowing south the first day, chances are pretty high I'd have contracted leukemia as an infant if I wasn't a miscarriage) on top of having a heavy family history of cancers, I live my life knowing any year could be my last due to cancer.

    The Netflix app you make is an item I wished for long ago but didn't know existed. Looks incredible. I've downloaded it and will most likely purchase it within the next week or two. Thank you again, both for your ingenious work and your generosity.
     
  10. Doctor Q Administrator

    Doctor Q

    Staff Member

    Joined:
    Sep 19, 2002
    Location:
    Los Angeles
    #10
    It must be very hard for you, mj_1903. I am truly sorry to hear that Rae lost her fight with ALL. Her young age was a factor in her favor for her bone marrow transplant, but there were too many factors working against her as well. How sad.

    It's stories like hers that get people to join the National Marrow Donor Program (NMDP), a registry (database) of tissue type information for potential marrow donors. The problem finding Rae a match for a transplant wasn't her blood type (the A, B, AB, and O types) as the biography says, but instead her human leukocyte anitigen (HLA) type, which needed to be as closely matched as possible to a donor. The more people join the NMDP, across as many ethnic backgrounds as possible, the better the chances are to find good matches for people like Rae.

    I joined the NMDP registry a few years ago but have not yet been matched to someone who needs marrow. I would not hesitate for a minute to donate marrow for Rae or someone else who needed it because it may be their only chance for survival.

    It sounds like Rae was a wonderful young lady. She deserved a lot more than 19 years.
     
  11. wdlove macrumors P6

    wdlove

    Joined:
    Oct 20, 2002
    #11
    I'm very sorry to hear about the loss of your friend Rae. You should take some comfort that you were able to be of support her. I'm sure that you made her time here on earth much more enjoyable. It's a wonderful that that you are doing in her honor.
     
  12. mj_1903 thread starter macrumors 6502a

    mj_1903

    Joined:
    Feb 3, 2003
    Location:
    Sydney, Australia
    #12
    Yeah I know it wasn't the blood type per se but for the story it just makes things a little less technical and hopefully people will read through the story and finish it.

    What I find most distressing is that she beat Leukaemia, twice, and successfully negotiated a BMT and Graft versus Host Disease only to succumb to a bacterial infection. When she went home she wanted to be normal so she stopped wearing her surgical mask and helped with things that put her at abnormal risk to infection. I think that possibly killed her. :(

    I am going to join the bone marrow database in Australia and start donating blood regularly as Rae did the latter whenever she could. She even went to donate blood soon after starting treatment only to remember that she could not.

    Ah well... I think I will be fine but her family may not be. No mother, no older sister and a sibling that is 13 years old that I am sure is scared of getting Leukaemia (mother and sister died of it). *sigh* This world can be a horrid place.
     
  13. dotdotdot macrumors 68020

    Joined:
    Jan 23, 2005
    #13
    This sucks.

    My 13 year old friend has Leukaemia but is being treated and is coming along well.

    My grandpa has just been enetered into a Hospice for Lung and Liver and Bladder cancer which can't be treated.

    Best of luck with the donations and such!
     
  14. skunk macrumors G4

    skunk

    Joined:
    Jun 29, 2002
    Location:
    Republic of Ukistan
    #14
    A terribly sad story. Thank you for sharing it. This world can indeed be very horrid.
     
  15. KingSleaze macrumors 6502

    Joined:
    Feb 24, 2004
    Location:
    So. Cal
    #15
    I extend my sympathies for you and her family's loss. I've been a member of the National Bone Marrow Registry for many years. Even before my own diagnosis with Cancer. No match was found for me back then. Unfortunately, because of my having had Cancer, they have had to remove me from the Registry. I've been cured for several years now and am back to donating blood as often as they will let me. About the only way I can truly give the gift of life.
     
  16. pseudobrit macrumors 68040

    pseudobrit

    Joined:
    Jul 23, 2002
    Location:
    Jobs' Spare Liver Jar
    #16
    I can't donate blood because I'm on inhaled steroids for asthma, but I'm confused as to why chronic asthma excludes one from marrow donation but exercise-induced does not.
     
  17. XNine macrumors 68040

    XNine

    Joined:
    Apr 7, 2005
    Location:
    Why are you wearing that stupid man suit?
    #17
    Man, what a f'd up way to go. I'm so very sorry, and I can't help but feel for her pain and suffering. My mother had kidney cancer when I was young and barely pulled through it.

    I unfortunately can't donate blood (I was in Germany when Chernobyl blew up, and no, I'm not kidding).

    I already have iPodrip, but I'm willing to donate. I will do so when I get home.

    I'm sorry for your loss. There's nothing I can say that will ease the pain, but I wish the best fo rall of you, her friends and family.
     
  18. Doctor Q Administrator

    Doctor Q

    Staff Member

    Joined:
    Sep 19, 2002
    Location:
    Los Angeles
    #18
    Interesting question. I checked what the real rules are, and found out the following: Even if you have a history of asthma or shortness of breath, you are still eligible to donate marrow if it is exercise-induced asthma or if you are not on asthma medication and have not had an asthmatic episode in five years.

    So it may be the asthma medication that causes the problem, not the condition itself. It could also be that exercise-induced asthma does not have a bearing on candidacy for surgical procedures while chronic asthma does. I'll see if I can learn more.
     
  19. dobbin macrumors 6502a

    dobbin

    Joined:
    Jan 28, 2002
    Location:
    England
    #19
    Sorry to hear of your loss.

    I used to know a bit about Leukaemia research as I was a fundraiser for Bristol University and we raised nearly £2million for a leukaemia research centre. The work the researchers do is amazing, but they constantly need more money to make progress.

    I am going to buy the recipe app as that could be useful to me.
     
  20. mac15 macrumors 68040

    mac15

    Joined:
    Dec 29, 2001
    Location:
    Sydney
    #20
    Sorry to hear of your tradgic loss mate, my heart goes out to you mate.

    Chris
     
  21. Doctor Q Administrator

    Doctor Q

    Staff Member

    Joined:
    Sep 19, 2002
    Location:
    Los Angeles
    #21
    I got you the official answer:
    The National Marrow Donor Program seeks to protect donors from unnecessary risks during the donation process. Medical guidelines indicate that steroid controlled asthma is a significant risk during the anesthesia process which proceeds the donation procedure and is cause to defer the donor from donation.

    Exercise-induces asthma would not take place during the donation process, thus potential donors with this condition remain eligible.​
    I heard on the news last night that Mary Travers of the trio Peter, Paul and Mary will be undergoing a bone marrow transplant for leukemia. The closest match in the Registry was only a 9-of-10 match. That and her age will make it plenty risky.
     
  22. pseudobrit macrumors 68040

    pseudobrit

    Joined:
    Jul 23, 2002
    Location:
    Jobs' Spare Liver Jar
    #22


    I see. I've been steered away from all forms of general anaesthesia throughout my life because of this.

    I was conscious for every operation I've had thus far, including getting my wisdom teeth out.

    Sometime later this year I'm sure I'm going to need surgery to repair a tear in a groin/lower abdominal muscle that's been bothering me, and I imagine that'll entail general anaesthesia.​
     
  23. StarbucksSam macrumors 65816

    StarbucksSam

    Joined:
    Nov 21, 2004
    Location:
    Washington, D.C.
    #23
    That story actually made me cry. I am SO sorry for your loss of your friend and I hope your sales go very well through June.
     
  24. Mechcozmo macrumors 603

    Mechcozmo

    Joined:
    Jul 17, 2004
    #24
    **** happens. And it happens too often to people that don't deserve it. But **** happens. :(
     
  25. mrjikey macrumors member

    mrjikey

    Joined:
    Feb 7, 2005
    Location:
    Wa
    #25
    I am very sorry to hear of your friend. My uncle just recently died of a rare form of Leukemia after attempting a bone marrow transplant, so I know how you must feel. All we can do at this point is pray for the family members and provide what support we can.
     

Share This Page