Keep praying

Keep praying for Jim. He is REALLY struggling. He says the past 2 weeks have been the hardest. Worse fear than when he had cancer.

I can hear gurgling in his lungs, and he's scared.

We go to the NIH this Sunday.

Judy thought we got to stay at the lodge every time we go, and we don't. That's only for family of patients that are actually in the hopt....if they have room, so seriously, pray for Jim, our finances, and my hand as I drive back down there. And pray that the CT scan give us something good.

I looked at the trial for GVHD of the lungs. It's stupid. It's for an inhaler. They're not kidding when they say they don't have treatment for it.

If interested here's the "trial." Jim's already on several breathers. This trip is about testing and comparing his lung capacity and to compare CT scans. I can't even stand to post my thoughts because then I have to feel them.

Summary:

Background:

Bronchiolitis obliterans is a form of chronic graft-versus-host disease (GVHD) that sometimes develops after stem cell transplantation (SCT) or bone marrow transplantation (BMT).

In bronchiolitis obliterans, immune cells that normally fight infections attack the lungs of the transplant recipient, causing destruction of lung tissue and fibrosis (scarring). When fibrosis develops, the lungs cannot work properly.

Montelukast (Singulair) is a drug that has been used for many years to treat asthma. Its use as a treatment for bronchiolitis obliterans is experimental.

Objectives:

To see if montelukast improves or stabilizes lung function in patients who develop bronchiolitis obliterans after BMT or SCT.

To assess the safety of montelukast in patients with bronchiolitis obliterans after BMT or SCT

To see if montelukast affects the cells that damage the lungs.

To see if montelukast improves other forms of chronic GVHD, quality of life, and overall survival in patients with bronchiolitis obliterans after BMT or SCT.