T+41: The One Where a Rash Has Me Jumping for Joy!

It worked.  IT WORKED!!! This morning there were 160 white cells, over 100 neutrophils and my Mom broke out in a red, itchy rash all over her body.  YES!!!  She has Graft vs Host!  It WORKED!!!   My marrow is in there and it is doing its thing and the appearance of GVHD confirms this.  This morning the Doctors said, “Congratulations!  You have some brand new white blood cells!”

In one week we’ve gone from catastrophe to amazing.

Mom still has a long road to travel.  GVHD will always be with her, but hopefully, in time, it will be mild.  She’s trading a deadly disease for a chronic disease.  Bone Marrow Transplant teams don’t say “cure” for quite a while.  We have to hit the one year mark before it’s significant.  Even after, she will continue to be monitored.

This morning Mom was excited….this afternoon she was pensive and afraid to believe.  Dad and I and Lon are very excited, but I can sympathize with her position.  We’ve been under such stress for the last year (since her diagnosis), it’s impossible to suddenly not feel that stress.  This victory feels very fragile.

In addition, just because the transplant has engrafted, she is nowhere near “well”.  Physically, she is extremely tired and she isn’t eating much.  Though she’s lost 14 pounds of fluid, her feet are still too swollen for shoes, and the skin is peeling off them.  She is still dealing with nausea and vomiting, but much less than before.  The chemo has done some damage to her bladder–I’ve looked it up and it’s called hemorrhagic cystitis (but her situation with it is mild).  You can look it up if you want to.  Her blood pressure is a little wacky– something she never had a problem with before.  That’s also from the chemo.  She is doing her laps, but lacks the energy to do much else– the concentration to read (though she wants to) or watch TV or even to talk much.  I think her body is going about the hard work of recovery and there is not one extraneous thing it can do.

She will be staying in her room until they get things under control.  But if there was NO other issue, they’d be putting her into outpatient care.  Right now!  It’s a little shocking.  She will have to report to IPOP daily for many weeks, and since she is so weak, she will soon be moving into the Hackerman House with my Dad.  He will be her night nurse (with relief from me and anyone else who might be able to help) and by day he will wheel her across the bridge to the treatment center, where she’ll continue to receive various drugs to keep this thing rolling.

It’s not over yet.  Nowhere near.

By now you know how my mind works– linking everything to the poetry and music that have always been my love.  What song came today?  Two– so totally different, I had to share both– jubilation and reverence in equal measure.

First, Jubilation:  “The Road to Shambala” by Three Dog Night (still reliving that 70s childhood).

Wash away my troubles, wash away my pain
With the rain in Shambala
Wash away my sorrow, wash away my shame
With the rain in Shambala

Ah, ooh, yeah, yeah, yeah, yeah, yeah, yeah
Ah, ooh, yeah, yeah, yeah, yeah, yeah, yeah

Everyone is helpful, everyone is kind
On the road to Shambala
Everyone is lucky, everyone is so kind
On the road to Shambala

(repeat chorus)

How does your light shine, in the halls of Shambala?

How does your light shine, in the halls of Shambala?

Lastly, Reverence:  a quiet one from an entirely different century, the Tallis’ Cannon, written during the reign of Elizabeth I:

Glory to Thee My God This Night

Glory to thee, my God, this night,
for all the blessings of the light:
keep me, O keep me, King of kings,
beneath thine own almighty wings.

Forgive me, Lord, for thy dear Son,
the ill that I this day have done;
that with the world, myself, and thee,
I, ere I sleep, at peace may be.

O may my soul on thee repose,
and with sweet sleep mine eyelids close;
sleep that shall me more vigorous make
to serve my God when I awake.

Praise God, from whom all blessings flow;
praise him, all creatures here below;
praise him above, ye heavenly host:
praise Father, Son, and Holy Ghost.

This entry was posted in June 2012 and tagged , , . Bookmark the permalink.

3 Responses to T+41: The One Where a Rash Has Me Jumping for Joy!

  1. David Scott says:

    YES……………..Thank-you, thank-you, thank-you Lord!

  2. Jim Hoffman says:

    Rash, piece of cake for this McGraw/Scott. Let’s stay positive.

  3. news says:

    Hey, I just hopped over to your web site using StumbleUpon. Not somthing I might generally read, but I liked your thoughts none the less. Thank you for creating some thing well worth reading.

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