The Leukemia & Lymphoma Society - Fighting Blood Cancers
7 Replies Latest reply: Dec 4, 2010 4:40 PM by simon74 RSS

Loss of our dear daughter

shellyku Registered Users
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I have never posted on this thread or any other on this website, but I can tell you I've read a lot of the posts over the last year.  My daughter, Sarah, was diagnosed with ALL back on September 24, 2009.  We were told she had to have a stem cell transplant a few weeks into her induction.  They tested our other daughter, Jillian, but she was not a match.  After checking the international registry, there was no match found there either.  It was decided she would have a cord transplant, which they found very quickly.  She went into remission post-induction and the cord transplant was scheduled.  A few days before that date, she got a call saying the tests on the cord had not been complete, they would reschedule for a few weeks later.  She then got a call a week later saying the cord was removed from the registry, they didn't know why.  Found another cord, scheduled the transplant for a month later, but in the meantime Sarah relapsed.  She ultimately developed pneumonia and went to U of Penn for another round of chemo to try to get her back into remission but it didn't work.  My baby developed more complications: fluid in the pericardium, blood in her lung, filled with fluids and passed away on August 18, 2010.  I AM DEVASATED!!!  Can anyone give me and my family some encouragement, some words to hang onto, something to take away this pain.  I'm sure anyone who logs onto this thread is hurting so much themselves, but I feel I need to chat with someone who's been through this!  Peace to all who are suffering in any way!

  • Re: Loss of our dear daughter
    MomtoRose Registered Users
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    Shelly, your loss and pain are so tangible!  First the shock from our inability to protect our children from disease -  but then to have the best efforts of others not be enough, I can't even imagine your pain.  I wish I had words that could soothe. You have my prayers for peace and your angel daughter is in my heart.  I am so very sorry - Marianne

  • Re: Loss of our dear daughter
    paralyzed Registered Users
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    28 years young. It is not fair. Nothing about these diseases are ever fair. Why o why...

     

    As a parent..I am so sorry...as another affected with a spouse with ALL, I am just angry. Angry at everything and everyone and the suffering and the loss.

     

    I am so saddened.

     

    Jim

  • Re: Loss of our dear daughter
    ncook Registered Users
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    OH Shelly, I am so so sorry!  Though no words can truly help your pain.  I know it must be different to lose a child, but I lost my mom Sept.18, 2009.  I know the pain, the heart aching so bad that you just don't think you can do it.. I wish I could say it gets better quickly, though grief is different for everyone.  It took me until really the 1 year anniversary till I finally was able to breath again and not feel the heavy feeling on my chest.  I just can't imagine losing a daughter. In my mind I lost the best mother.. She was my bestfriend and there was so much I had hoped to share with her.  So many people here will support you through this. Right now I have a freind going through a cord blood.  She is 34 with 2 children.  Things do not look good.  I really hate that this had to happen to so many beautiful people!  It really is not fair!

     

    HUGS! nicole

    • Re: Loss of our dear daughter
      shellyku Registered Users
      Currently Being Moderated

      Thank you all for your responses!  I know there is nothing any one can say to make our pain go away but I feel people on this thread/website have some idea of what we are going through.  This disease sucks but then death from anything sucks!  It is just so hard to believe that someone you love so much can just be taken.  That's it, gone!  I thank you all that responded, it helps to know that there are people out there who care enough to take the time to give a person who is reaching out a word of encouragement and caring.  I truly appreciate it!  May you all find peace and comfort in each and every day!  With Love.........

  • Re: Loss of our dear daughter
    willowbayfarm Registered Users
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    Hi Shellyku,

     

    Your post really struck a chord with me, and I'm so sorry that your beautiful daughter lost her fight against this nasty beast.  You and your family are in my prayers tonight. 

     

    - WBF

  • Re: Loss of our dear daughter
    annsmother Registered Users
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    I'm so sorry to hear of your loss.  I lost my daughter Ann nearly 5 years ago to ALL on Feb. 7, 2006.  She was just 24 and had suffered for 2 1/2 years.  I know how devasted you must be.  Do you have loved ones to comfort you now?  People who loved her and love you now?  If so, let them help you and don't try to go it alone.  Give yourself time to get over it and don't expect to feel the way you used to.  You've entered a new life now and you must figure out how to go on without losing her memory or losing your mind.  Try not to blame yourself for her death or her illness but realize we all deal with guilt--it's part of the territory for bereft parents.  Some days you'll be numb, others you'll be angry.  Just be kind to yourself.  Take care.

  • Re: Loss of our dear daughter
    simon74 Registered Users
    Currently Being Moderated

    My deepest sympathies are sincerely with you... This is something that feels so wrong, against the natural order of things, though I have found that thoughts like this, and concepts of 'unfairness' to be a spiral not worth going down, as there is no such thing. Death does not reward the good or punish the bad, it just IS. Somehow we live thinking it wont come for us or our children, and when it does, we are completely debilitated and destabilized by grief. At the beginning of September my son Milo who was 21 months was diagnosed with ALL after being sick with different viruses and infections for just over a month. The prognosis was about as good as it can be in that situation, and he responded well to chemo straight away. 10 days later he was released from hospital with us overwhelmed by the struggle that lay ahead, but always confident of a full recovery. 3 days after that he awoke in the night with a fever so ii took him back to hospital.. While waiting to be transferred to an available bed, we slept together, him in my arms, and sometime in that period he suffered a massive stroke, a side-effect from the Asparaginaise, from which he never awoke. 3 days later we made the painful decision to let him go, and we said goodbye as the sun shined on the flowing East River outside the window...

      It was incredibly alarming to see the rapidity with which our beautiful, healthy, happy boy declined, about 6 weeks from the very first sign of sickness to the end. Some small shred of consolation comes from the fact that he didn't suffer for very long, he didn't spend months in hospital (which he hated), and we didn't spend months or indeed years worrying whether he (and we) would make it through this. His life was a short and happy one, and as my wife said in his eulogy, perfect in it's brightness and intensity. He knew nothing but joy in his life, he lived for the moment, and he never learned to hate, worry, or panic about this sometimes stressful thing we call living. This doesn't take away the sadness, nothing does that, but it sometimes makes returning to the horror of the end in my mind less frequent, and it makes the celebration of his sweet short life slightly easier and less filled with remorse. When he saw the light, he went straight for it....

      On Monday we will celebrate what would've been his 2nd birthday, and we will cry tears of pure sadness, that no parent should ever cry, but we will be amongst friends and loved ones.

     

    I cannot speak for anyone else, but it is of some strange comfort that there are others who know this pain, who know what this feels like. Feeling like you are not alone is huge. Nothing will ease this pain except time I'm sure, but as we all know, time does keep moving, even when you don't want it to...

     

    With much love and sympathy to all.

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