CAL-101: Day 15

John has completed two weeks of treatment with CAL-101. It is working beautifully. And it is utterly amazing to me how much the lymph nodes in his neck have shrunk in only two weeks. His neck looks completely normal again.

When John's lymph nodes gradually become larger and larger, I get used to his neck being like that and I forget how thin his neck is normally. But seeing his neck change this drastically in such a short period of time makes me realize just how swollen he has been. He looks fantastic.

For those who know the significance of these numbers, John's counts are as follows:
WBC 7.5
LYM 5.1/67.8%
Neuts 2.0
RBC 4.33
HGB 13.6
HCT 41%
PLT 146

His blood is stable. All of his counts are within normal range except for the lymphocytes, which are a little high.

He is still tired. But as I've said before, that is probably a residual effect from having six cycles of chemotherapy (ending the last week of January). I can't wait until he feels as good as he looks. And I know he can't wait to feel good again, too. But he did remind me the other day of what Billy Crystal used to say as Ricardo Montalban on SNL.

"It is better to LOOK good than to FEEL good."

I am very thankful that this drug is available and that John was able to get it while it is being studied. I hope and pray it will turn out to be the drug that CLL patients can take to manage their disease over a normal lifespan. I hope that not only for John, but for all the other CLL patients--and the families who love them--whom I have come to know since John's diagnosis in 2007.

Since I have been involved in the CLL online community, we have lost some dear friends, and many others are in difficult struggles with their CLL. Some have been battling for a very long time and others have progressed quickly. I will never forget the day I signed onto CLL Christian Friends and discovered that Loren Schufeldt was gone. He was about John's age, had a great sense of humor and a very upbeat attitude. I just did not expect him to be gone so soon. I realized how attached I had become as a CLL friend because, despite having never met him in person, I was devastated by his loss.

Life is so precious. Every day that we have with our loved ones is a gift. Those of us with a diagnosis hanging over our heads may be a little more intensely aware of that, but it's true for all of us. Life can change in an instant. And I have been reminded of that once again this morning.

A dear friend of mine lost her youngest son yesterday. He was in college and healthy. Today her whole world has forever changed; just as John's world was forever changed on August 12, 2003. My heart is breaking for my friend and her family.

Please say a prayer for my friends;
Susan and Lee Moss.
They and their remaining three children are deeply grieving a very untimely and tragic loss.


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