T+49: Week 1 of Outpatient and the Counts Keep Rising!

Mom’s white counts yesterday were 2,660!  The normal white count range begins at 4000–the counts are nearly doubling every day at this point.  They can slow, and they can go down, but at the moment, things with that are good.

This week was not without its challenges.  Mom made it 2 days in outpatient before a transfusion of platelets caused an allergic reaction (her throat closed up).  She ended up back in the hospital for observation for 2 nights, so they could clear that up.  While she was in they did a biopsy of the rash on her leg to confirm that it was graft v. host (and it IS).  They changed around some of the 40-some medications she takes to include a steroid.  She also got a visit from Dr. Smith, her doctor who was in charge of her care before the transplant (and will be again after she’s released from IPOP).  He said he’d been traveling and had gotten an email from her “number one patient advocate, Kellie” during the week things looked grim, and he wanted to come by and check on her. The day the other doctors said the transplant “failed” but were vague on other information, I emailed Dr. Smith for clarification, because he has always been very straightforward about this process and open to communication.  He was nice enough to have emailed me back right away.  Both he and Susan (the transplant coordinator) have been terrific in this process.

The swelling in her legs went down– she lost 14 lbs of fluid– and then it came back.  She’s now up 20lbs from her real weight and is having the shoe/pants problem again.  This one’s going to just take time.

She sounds GREAT.  Last night we had the longest phone conversation we have had since before the transplant and it was like “before” this all started.  Her improvement is for many reasons– clinical, due to the white count going up, but more than that psychological, because she’s with my Dad all the time.  He’s taking perfect care of her with the utmost patience.  He’s cooking for her and she’s starting to eat more normally.  He knows what she needs without her having to explain it.  He’s “there” with her, and that’s so much better than being in a hospital room.  Little M. says Grandpa deserves a big gold star.

Mom wanted to type an update herself (and hopefully will this weekend) but her keyboard malfunctioned and she can’t get it to work.  She received the most wonderful gift from her friends in the Open Studio class she’s taken for so many years.  The ladies created a banner that had all their pictures on it and a picture of the paintings they are working on so she could see the class though she isn’t there this semester.  It made her week–we all thank you and Mom will be writing soon.  She finally feels well enough to answer all the emails and to blog and technology has failed us!  We’ll get it together.

My son and I have our best conversations right before he goes to sleep at night.  He’s been very stoic about this situation, but I think he’s reached the point of being “done” now.  Each night this week he talked about how much he misses Grammy and Grandpa.  He said, “I miss how Grandpa picks me up and lets me push the button (to the garage door opener), I miss Grammy playing cars with me, I miss eating at their house, I miss everything!”  One of the hardest things I’ve found to deal with is the grief my child feels.  With a child’s feeling that time lasts much longer than adults perceive it, he probably thinks I’m the empty promise lady– I keep telling him they will be home “soon”.  My Dad came home one afternoon this week to play with him– M tried to squeeze in every game they ever played into 4 hours!  Now that I’m finally finished with work until August, I’m going to trade-off with Dad so he can come visit M. more.

This week I’ve been feeling that the world is very beautiful.  I feel content with things and that is unlike me.  The year before my Mom was diagnosed I was feeling very restless.  I was dissatisfied with the state we lived in and Lon and I were ready to pack up and go.  I moved a lot during my childhood and early adulthood– I think wandering is in my blood.  I’ve seen so many places and met so many people that being in one place this long– 12 years–seemed stagnant.  With the diagnosis, I put all that aside by necessity, and as this part of the process is ending, I’m finding I’m feeling grateful and content with what I have.  That could change in the future– but what won’t change is the way I think about life.  This experience has been so big–it makes petty things that used to overwhelm seem small.  I guess I’ve been given the gift of perspective.

I think though, that I’m going to have post-traumatic stress disorder.  I made a joke about it to my Mom, but apparently it’s a real thing and they’ve already mentioned it at the hospital.  We’ve lived this entire last year in such a heightened state of fear and anxiety.  It’s hard to come down from it and relax our guard.  And since we’re still not nearly done, I expect we’ll be grappling with all the feelings the continuing treatment and blood tests provoke.  The goal is to begin to enjoy everything again, and to find a box to put the anxiety in.

The feeling that “right now” is something I am so grateful for has translated into a new song for my son’s bedtime:  The Way You Look Tonight:

Some day, when I’m awfully low,
When the world is cold,
I will feel a glow just thinking of you
And the way you look tonight.

You’re lovely, with your smile so warm
And your cheeks so soft,
There is nothing for me but to love you,
And the way you look tonight.

With each word your tenderness grows,
Tearing my fear apart…
And that laugh that wrinkles your nose,
It touches my foolish heart.

Lovely … never, ever change.
Keep that breathless charm.
Won’t you please arrange it’
’cause I love you … just the way you look tonight.

With each word your tenderness grows,
Tearing my fear apart…
And that laugh that wrinkles your nose,
It touches my foolish heart.

Lovely … never, ever change.
Keep that breathless charm.
Won’t you please arrange it’
’cause I love you … just the way you look tonight.

 

 

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2 Responses to T+49: Week 1 of Outpatient and the Counts Keep Rising!

  1. Jackie Mc Lain says:

    Kellie, just believe in miracles and God. He is showing up everywhere and everyday. Have faith!!!
    give your mom & Dad from Uncle Ed & Me.

    Love, Jackie & Ed

  2. Irene Baxter says:

    Kathy, What a joy it was to read the most recent blog and to hear that you are making GREAT strides in recovery! We continue to keep you in prayer EVERY day for His healing touch on you!!

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