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Hope for a cure: Tom’s allo transplant journey (Part Twenty One)

Posted on June 30 2014 by Pat Killingsworth | 611 views

Two weeks ago I posted an update about our good friend, allo (donor) transplant patient, Tom.  He’s back home now, living with his wife and caregiver, Whitney, and his energetic, adorable kids.  But as I reported, things haven’t been easy:

Hope for a cure: Tom’s allo transplant journey (Part Twenty)

Concerned that Tom’s inactivity might be slowing his recovery, I emailed Whitney about it.  She reassured me that everyone is working hard to help Tom keep moving:

Hey Pat,

Trust me, no one is more frustrated than Tom. They have checked his heart over and over again; all good there. He’s doing physical therapy (PT) twice a day on his own, and twice a week with a physical therapist. He’s determined to make it up stairs. As much as the set back sucks, it’s just going to be a slow process. His muscles have gotten much stronger because of the PT. The biggest problem now is the  autonomic nerve damage. From my understanding the blood doesn’t get to his head like it should. It could be permanent, but we aren’t letting our thoughts wander that way—we are just trying to be patient and happy with any progress. 

I wanted readers to get a glimpse into our everyday life. I know it will get better, and I easily put on a happy face most days.  But for people considering this path I want them to see the whole picture, not just the positive side. 

Carwash_MAXReese_PatLike today; it’s a perfect sunny summer day. The kids and I are out front washing the car (and apparently Max; see photo). I did take a break to get Tom his pills and hook him up to some fluids—he’s having a rough morning; a normal day for us right now. I’ve reached out for more help this past month and now I feel that Tom getting stronger and I am, too. 

Thanks to all the readers for the beautiful feedback, thoughts and prayers!

Whitney

As I reported in my last post about him, the great news is Tom’s myeloma is barely measurable and still improving.  This morning one of our readers forwarded me a link about an athlete with leukemia.  He needs an auto transplant.  But the odds of him being cured is better than 50%.  And if he’s leukemia free for three years it jumps to 80%.  I think a lot more of us would be willing to go through what Tom is for odds like that.

Tom and Whitney were brave enough to try this risky procedure based on odds far worse than those.  And in this case it may pay off.  But in most cases it doesn’t: allo transplant recipients with multiple myeloma tend to relapse at the same rate as auto (using one’s own stem cells) transplant patients do.  The wild card: 10% or so don’t make it through the first year, and 10% hit the lottery–remaining myeloma free for 10 years or more.

Hang in there, big guy!   Remember that you’re doing this for your family–and it’s working!

Feel good and keep smiling!  Pat

3 Comments For This Post

  1. JustinS Says:

    Thanks again for the updates. I honestly am currently checking your blog daily mostly for Tom’s update and yours and less about MM-related news!

    When reading about the blood flow issues Tom has been having, I wonder if anyone has talked to the family/docs regarding compression gear? They have regular clothing you can buy at any store, but also doctor prescribed gear for more support (and have it graded from high pressure near the extremities to lower as you get closer to the trunk). There may be even more extreme possiblities (I’m thinking like a flight suit? that could apply force and not just resistance).

    I could see a possible benefit that might help to alleviate the complications with light-headedness and fainting.

    Keep up the fight Whitney/Tom/and family.

  2. J Says:

    Any update on Tom? We are headed to the Cleveland Clinic next week…interested in update on you Pat and Tom! Wishing and praying for the best!

  3. Pat Killingsworth Says:

    I’ll check with him and see how he’s doing…

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