The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 630. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    felursus Registered Users
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    I'm glad she agreed to the tube.  From what I've been told there is less risk of some infection with PEGs that NG tubes (eg. pneumonias).  One of the reasons she's so tired is the nutritional status.  TPN is limited.  Let's pray that 1) they agree to the PEG and 2) that once it's up and running they are able to give Maria better anti-depressants which may make it possible for her to have a better attitude toward doing what she needs to do to get better.

     

    Jaime, you ARE normal.  All of the worry, stress, self-doubts, hyper-states are totally normal in your circumstances.  Gee, lots of us couldn't cope as well as you have.  You know this whole thing isn't just about Maria and her ability to survive, it's also about you and YOUR ability to come through.  You are doing a fantastic job, and I am full of admiration for you.  There IS no one "normal" reaction/set of reactions/way of thinking or feeling about what's been happening.  I used to be amazed at the MDs at Sloan Kettering who would talk about some patient who'd been given a poor prognosis, and then they'd add that the patient was "depressed" as though that were an abnormal reaction.  So let's make this personal: was I depressed when they told me I had AML.  Yes and no.  Was I depressed when I was told I'd "failed chemo 101"?  Yes.  I accepted anti-depressants for about a week and then decided I didn't want them.  I had a plan of action.  I'm more pissed than depressed now.  Of course if I start feeling really sick, I may be depressed again.  Who knows?  Maybe I'm just ornary enough to be mad enough to keep giving the finger to this disease.  I don't know.  I do know that if I am ever in the dumps long enough that I become non-functional, I shall welcome the anti-depressants with open arms.

     

    Sorry for rambling.

    Hugs,

    Karen

  • 631. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    babygap5 Registered Users
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    Jamie, i've just read your posts and my heart goes out to both you and Maria.  I am a caregiver to my husband who has been fighting hodgkin's since 2009.  He had a stem cell transplant at the end of 2011 and although he is recovering well, we still don't know if the large tumor in his chest is active or not.  Many of your feelings and frustrations and tears I have also experienced, and have often wondered who has it worse, patient or caregiver.  Honestly, both have it the same.  I will never know what it's been like for my husband and he will never fully understand what it's been like for me.  But what has helped us get through it all, is the love we share for each other. 

     

    Jamie, you and Maria are in my thoughts. 

  • 632. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    KyGuy Registered Users
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    Has Maria made talked to the hospital staff about not wanting to be left alone?  The purpose for having visiting hour restrictions is so that the visitors don't tire the patient too much.  If they know that she doesn't want to be left alone, I would think they'd make an exception.  While that's a burden on you, if it helps her to be more comfortable, perhaps you could work something out where you could be there a good amount of the time but still get away to decompress.  This is about her and the hospital staff should realize that.

     

    Take care,

    Kelly

  • 633. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    jamielynn Registered Users
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    This morning Maria passed on. I was right there with her the entire night and morning. Her dad and sister got there for the very last few minutes. I am glad she is no longer in pain. I am without words on how I feel.

  • 634. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    babygap5 Registered Users
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    I wish there were words I could say that would ease your pain right now.  Maria was lucky to have you in her life.  You went above and beyond to care for her.  I'm glad you were together when it was her time.  You are a brave woman, as was she.  Sending you healing thoughts and a hug.

  • 635. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    Samcerly Registered Users
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    Jamielynn, I am heartbroken for you.  Your love for Maria is inspirational.  I can only imagine your pain, I don't have adequate words except I wish there had been a different outcome and I am truly sorry for your loss.  I am glad Maria is no longer in pain, she fought an incredible fight.   She was incredibly courageous.  Praying for you and her family.  D

  • 636. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    felursus Registered Users
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    Oh Jaimelynn, I am so very, very sorry to hear your news.  My heart goes out to you.  I wish I knew the right words to write that would help you at this time, but I'm beyond words.  Maria was extremely fortunate to have had you in her life.  You were the heroine standing sword in hand at her door fighting the dragon.  You must know that you did everything possible to help Maria - everything determination, hard work and love could possibly do.  I know that now there will be a huge hole in your life, but you WILL get through that just as you have got trhough all that has been going on for the past year.  The battle was yours just as much as it was Maria's. 

     

    Once you get through the next couple of weeks, you need to go and get some rest.  Be with people you love and who love you.  Find strength for your soul.  Please do keep writing in and let us know how you are doing.  We all love and care for you for yourself.  We are here to help in any way we can.  I hope once you have rested and recouperated, you will go to school and get the education you deserve and need so that you can spread your wonderful light to others in need.

     

    How is Maria's sister doing?  Wasn't it dangerous for her to travel with the baby's birth so near?  I hope all is well with her.  Of course it was wonderful that both Maria's dad and sister could be with her at the end.  I'm sure Maria was comforted.  And now she has achieved her wish to be with her mother.  I hope you can find some peace in that.

     

    With much love and very big virtual hugs,

    Karne

  • 637. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    pamsouth Registered Users
    Currently Being Moderated

    Jamielynn,

     

    I have been following your post for some time, now. 

     

    Sending you my deepest sympathy in your loss.  I am so very sorry!

     

    I am lost for words.  You were so faithful & devoted and did all that you could have done.  I am glad you were with with her all night and morning as that was her wish.

     

    Prayers, Pam South

  • 638. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    warrior Registered Users
    Currently Being Moderated

    Jamie

    I am so very sorry for your loss. This is not the outcome we all hoped for.  I hope in the days ahead you can find some peace and hold on to all the loving memories of Maria. You have been a noble partner and caregiver. I am glad Maria was able to have you and your love in her life.

  • 639. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    Tex Registered Users
    Currently Being Moderated

    I am very sorry, Jamie.  I never thought it would turn out this way.  She fought so well that I kept expecting her to just get fed up and beat this crap.  Sometimes, the disease just too strong and hits us so relentlessly it finally overwhelms us. 

     

    Maria made it through onslaught after onslaught and that shows her strength and, probably more than anything, how very badly she wanted to be with you.  Perhaps there is some comfort in knowing that and in trusting she is reunited with her mother.

     

    We will be here for you in the days and weeks to come, if we can do anything to help support you.  For now I pray for strength for you and her family and and I hope you can find some peace in knowing this nightmare is over.

     

    And nothing about this is your fault.  I know you're going to be tempted to accept blame.  The only blame is on this hideous disease.

     

    Blessings

  • 640. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    paralyzed Registered Users
    Currently Being Moderated

    This disease has claimed another innocent person. She did not deserve this and neither did you. All of the emotion and sacrifice you poured into being a caregiver was remarkable. In the end there was nothing that could change the outcome. Your work is not over...In a short time, perhaps your toughest fight, it will be time to focus on healing yourself, ridding the bad and keeping the good memories.

     

    I hope that it is not too long a period before music, laughter and a light heart return to your world.

     

    Jim

  • 641. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    SFBill Registered Users
    Currently Being Moderated

    Jamie:

     

    I've been following Maria's battle from the outset, though I don't believe I have posted a response to any entries in the past.  I am so very sorry to learn of Maria's passing - she certainly put up a valiant fight.  I can't begin to express how impressed I am with your courage and support as her partner and advocate during her battle - if at some point I ever need to fight a battle as fierce as Maria's (I have Small Lymphocytic Lymphoma), I can only hope that my husband exhibits even half of the tenacity that you have as Maria's partner in her battle - though your heart is breaking now, you should be proud of the strength of spirit you exhibited during her battle!  As others have said, I hope that in time you can push the bad memories of Maria's valiant battle to the background and remember the true strength of the relationship you and she had, and that only the positive experiences you shared rise to the forefront.  May you soon begin to heal from this experience - though you impress me as an extraordinarily strong person, you will likely be even stronger once you have the opportunity to refocus your attentions upon yourself and recovery from the battle.  My thoughts and prayers are with you and Maria's family.

     

    Bill

  • 642. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    mamawarrior Registered Users
    Currently Being Moderated

    Jamie, i am so sorry and my heart breaks for you and i pray that somehow you can find peace in this, someday. I worry for you and wonder how you will even begin to heal, where will you go, where is home? Please keep in touch, when you can. I care about you and pray for you in your upcoming days.

     

  • 643. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    Carrietaker Registered Users
    Currently Being Moderated

    Jamie,

     

    My condolences to you.  It is so terribly sad that you've lost her.

     

    Although I haven't entered much since my husband died in October, I have daily followed what you've been writing about Marie.  Marie had a rough time of it and all of that has deeply affected you and, indirectly, those of us who have followed your writing.  I

     

    I wait my turn in the cyber line to give you a heartfelt hug. 

     

    May you find the peace which can come with this terrible change, for peace is intertwined with the knowledge that she is no longer suffering.   And as has already been stated, be kind to yourself: let those "what if" thoughts go and fill their space with your finest memories of Marie, for those are far greater than the sum of the memories of her illness.

     

     

    Carrie

  • 644. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    willowbayfarm Registered Users
    Currently Being Moderated

    Jamie,

     

    I can't begin to express how sorry I am - for everything you both have been through.  I have gained a tremendous respect for you as you demonstrated unwavering loyalty and absolute devotion to Maria throughout this hellish journey.  I hope you can take some small comfort in knowing that Maria is now free of pain and discomfort.  And I hope you will eventually come to a place where the bad memories fade and only the good memories remain.  I know I would want to be remembered with a smile, and I've tried to respect those I've lost by concentrating on the many good memories I have.

     

    Do please keep in touch with us and know we're here to support you as you rebuild and recuperate.  This is just one of many times I wished I was there to give you a heartfelt hug.  You will be in my thoughts as you move towards healing.

     

    - WBF

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