Thursday, March 04, 2010

Heartfelt Sympathy

The words "Heartfelt Sympathy" come to mind when I think about Kathryn. I've had several bouts of emotion lately that have grabbed me by the throat and I have felt like choking. Sometimes words fail me as I think about our life with HPS. It is a brutal disease and shows no mercy to our beautiful daughter.

After Kathryn was treated last week with Rocephin for a blood infection, she began to have problems with bleeding. At first there were new bruises. But then over the weekend she had bleeding in her ear canal which caused dizziness and also stressed her endocrine system. We used Stimate for the bleeding and increased her dose of Prednisone. Then her electrolytes became imbalanced. Paul and I spent the better part of the last few nights awake with her, trying to keep enough potassium, calcium, and magnesium in her system to help her through the muscle spasms and cramping. It was difficult to see her like that again.

Yesterday I took Kathryn back to the dentist to have her mouth ulcers checked and was told that there is no delaying mouth surgery. It is scheduled for April twentieth. Her gums have receded so much that the roots of her teeth are exposed. In order to operate on her mouth she will need a transfusion of platelets first. If she does not have the grafts she will eventually lose the teeth. All of this at once has been a heavy hit to Kathryn's emotions. I went to a baby shower yesterday without her. She had looked forward to the baby shower with great anticipation so I went in her place. I tried to tell her all the details when I got home so that she could join in the spirit of the happy event, but her expression remained sorrowful.

Maybe it is the length of time she has been fighting, but it seems like the fighting spirit is quieted for this season. Looking into her tired eyes I cannot blame her for needing a quiet corner for awhile. Several tests were run today for liver toxicity, since most of her symptoms seem to point to a problem there. The hematologist came out to the waiting room and talked to me after seeing Kathryn. He was sincerely sorry to see Kathryn looking this way, but in his work I know he has seen many patients who become weary of the fight.

Around our home we talk about our summer plans, our next vacation, and the upcoming celebration of Passover, and there is interest on Kathryn's part. Although weariness has settled over us for this season, our faith does not waver. Some people may read this blog and wonder how a loving God could stand aside and watch the battle for Kathryn's life. But in that suffering we have increased our prayer time, we're devouring scripture like hungry bears, and are looking to the horizon with the hope of His appearing. And that's all good.

I'll close with a poem that I can dedicate to all of those who have become weary of the fight. I love words that acknowledge the pain but dare to lift our souls to new heights.

Casting All of Your Care
by Thomas Washbourne 1606-87

Come heavy souls, oppressed that are
With doubt, and fears, and carking* care.
Lay all your burdens down, and see
There's one that carried once a tree
Upon His back, and, which is more
A heavier weight, your sins He bore.

Think then how easily he can
Your sorrow bear that's God and man;
Think too how willing He's to take
Your care upon Him, who for your sake
Sweat bloody drops, prayed, fasted, cried,
Was bound, scourged, mocked and crucified.
He that so much for you did do
Will yet do more, and He cares for you.

*burdensome