The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 495. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    felursus Registered Users
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    Something like Day 127.  Cross the possible relapse Rubicon when you have to - not before.  I agree with MamaWarrior and the others: Maria's on so many drugs that can affect blood counts that until you've got the BMB report, you can't possibly know for sure.

     

    I hope and pray that as the drugs get out of Maria's system things will look up.

     

    Hugs to you both,

    Karen

  • 496. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    warrior Registered Users
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    Jamie

    I will add my 2 cents worth.  Let the bmb tell you whether Maria has relapsed...I am holding  out a lot hope that all  the many things that could lower her counts are indeed impeding recovery. I also would not move Maria at the moment. She is at a hospital where there is a great deal of expertise and experience. This is worth all the hardship of being away from home. You will note that many of the folks of this discussion board traveled thousands of miles to be treated by doctors with lots of experience. Lastly is there a medical psychologist service that is different from psychiatry? As I may have mentioned in the past, Kathy's counts post induction were very slow coming back....she was not a happy camper. teh nurses called for a psych consult... the good psychiatrist determined that Kathy did not need medication, but would benefit from seeing a medical psychologist. She continued seeing this person also as an out patient.  I agree with Tex, us caregivers may walk side by side with our loved ones through all this treatment BUT we are not the ones with the diagnosis, or the ones having poison poured into our blood stream. Managing kathy's  moods  in face of all the adversary was way above my pay grade.

    Hang in there...

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

    Her counts are still low, but no blasts showed up in today's labs! What does this mean?!? I'm anxious for the biopsy and scared. She's agreed to do it tomorrow.

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

    I don't know!  I only do know that there's a difference between having excess NORMAL blasts - because the body can make excess one when it is recovering from chemo (and, I guess, from transplant) and leukemic blasts (the ones that aren't capable of developing into mature cells). 

     

    I'll keep Maria in my thoughts tomorrow for the BMB.

     

    Hugs,

    Karen

  • 499. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    paralyzed Registered Users
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    Jamie

     

    This disease has worn we out mentally and physically as a caregiver...even after sleep, I hear my tempurpedic bed calling me back.

     

    Keep up the good fight, make the best choices you could and try to let go of things out of your control.

     

    Jim

  • 500. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    Tex Registered Users
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    felursus wrote:

     

    Attendings don't "rotate".

     

    Well, yeah, they do.  It depends on the center.  My attendings rotated monthly.  So did my PA/Resident/Fellow.  They staggered them by a week so you didn't get a whole new group at once.

     

    I think MDA has a similar practice.

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

    jamielynn wrote:

     

    no blasts showed up in today's labs! What does this mean?!?

     

    It could mean a few things.  I was sent to the doc who would wind up being my hem-onc a year and a half before I developed AML with CLL  blasts in my bloodstream.  Blasts can get out there. 

     

    It could also, as you know, indicate a relapse.  I'm not sure what else it might mean but there have been folks who showed peripheral blasts and been fine.

     

    Don't put the cart before the horse.  Get the BMB and see what it shows.

     

    Blessings

  • 502. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    warrior Registered Users
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    Jamie

    this means that you do not have enough information to draw any conclusions...wait for the BMB. Enjoy today take a walk and get some sleep

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

    Jamie,

     

    Wow, I don't know what the blast situation means.  You're not going to know before the bmb.

     

    I would really hesitate about moving her.  At one point when I wasn't doing well, my family talked about moving me to a transplant facility.  I knew I wouldn't make it through the trip.  When she's as far down as she is, the trip itself could do a lot more harm.

     

    Take care,

    Kelly

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

    Well when Marias dad talked to the Dr.  The Dr told him

    that she had to eat enough or she would die. But he didn't put the feeding tube back in and is waiting to do it for a few days. How does that make sense? She's eating but not enough. I hoping the scandishakes are at the hospital tomorrow. It says they were delivered. But I have to wai till tomorrow to see what I can find out. The dr also told him as far as transferring her, he doesn't think she'd make it. I'm just so confused with everything and terrified of the biopsy results. Although I might be a little more terrified if the results are fine and she's going this route anyway...

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

    I don't know about the feeding tube - although as I said before, a tube is a portal for infection.  Maria's recovery has always been in Maria's hands - barring relapse or acquiring an over- whelming infection which, obviously, are outside her control.  You can enourage, fight with the MDs and nursing staff, try to get her psych assistance, but in the end it's up to her.  She has to think of food as medicine: it doesn't matter what it tastes like (or doesn't taste at all), her JOB is to consume calories and enough protein.  (I wasn't anywhere as sick as Maria is, and I do know how hard it is to eat under her circumstances.)  Maria's JOB is to stay with "the program".  If she remains stubborn and refuses to do what she needs to do just because she's "fed up", she'll be as good as killing herself.  I know this sounds harsh, but that seems to be the reality.  There may not be anything you can do - no matter how hard you try: God knows, you've BEEN trying, and you've been a saint.  I'd certainly try to set up Skype so Maria can "see" her sister and dad when they can't be there. Maybe they can get through to her. I shall pray that the shakes will help.

    Hugs,

    Karen

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

    jamielynn wrote:

     

    he didn't put the feeding tube back in and is waiting to do it for a few days. How does that make sense? She's eating but not enough.

     

    It makes sense to me, though it's not what you might call "playing nice." 

     

    What I'm reading in your posts is that medicine has done what it can.  The rest is up to Maria.  So, keeping her on TPN isn't doing her any favors. 

     

    I broke my knee during Christmas last year (2010).  The docs were able to set my leg and make it heal.  However, getting back to walking was up to me.  They could fix me but they couldn't make me whole.  I had to do that with therapy at home and at the clinic. 

     

    This is Maria's therapy time and the therapy is eating.  Yes, she has pain to overcome to get where she wants to go.  But if she wants to live, she needs to put food in her mouth, chew it and swallow it, whether it bothers her or not.  At least, that's what I'm hearing from your reports from the doc.

     

    There would've come a point where my doc had to take the same attitude about my knee, if I hadn't already learned my lesson. 

     

    The docs will continue to do the medical thing but, unless she eats, the docs think it will all come to naught.  So, forcing the issue makes sense from the doc's standpoint.  No more feeding tubes, she's got to chew.

     

    Now, I don't speak for the doc.  He might be thinking something else entirely.  But from this perspective, it makes sense to me.

     

    Blessings

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

    It sounds like it's time for tough love.  You need to spell it out for her - you don't need to be harsh; just factual.  It's in her hands now and she needs to know it.  I'm sorry that it's gotten to this point but if she wants to live, she needs to fight for it.

     

    While you're waiting for the scandishakes, get some carnation instant breakfast (powder or drink).  Those will add calories in the meantime.  Concentrate on high calories in small portions.  You can't expect her to eat large amounts so you need to make the most of the amount that she's able to eat.

     

    Take care,

    Kelly

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

    I had an hour long meeting with the Dr and all the people who follow him around the hall and a social worker was there too. Long story short, we are doing biopsy at 3:30, we are doing TPN. We are adding BeneCalorie to whatever she eats including her soups so instead of the entire bowl of soup being 60 calories, it's 360. Am I mad because I asked about Benecalorie before and got nothing but magically they have it now? YES...BUT whats done is done and now all we can do is go full force from here on out. They are going to give her a stimulant...it's supposed to help her energy and keep her awake more often in hopes that she'll eat more and do more with physical therapy. The Skandishakes may more may not be here...they are looking for it and will send it in if it's here, if they sent it back I'll have to contact the company. Larry aka Jarhead, brought us some cookies his mom made, and his sister is a teacher and had her class make cards and it was so amazing...children are so pure and sweet...and I hope so much, that she pulls through and can make those kids proud! I will update tomorrow when we get the prelim results.

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

    http://www.orangefightingsidekick.blogspot.com/

     

     

    Go to the link for pics of the cards and posters from Maria's angels! <3

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