update from week of July 10-17

from Lisa's Facebook update on Fri. July 17:
I know many of you are anxious to hear what is going on with Jon, but up until today we really had no information. Jon has been taken off respiratory precautions, so the kids were finally able to visit today. The tuberculosis was negative - praise the Lord! Jon seems to be feeling better today, which has been encouraging. He loves hearing from all of you by email or facebook! Keep it coming!

We learned from the doctors today that the findings of the needle biopsy were inconclusive - nothing came up positive. The bronchoscopy was negative for everything they tested for including RSV, but there is definitely something going on. Jon has two issues right now: 1. His severely decrease lung function, cough, shortness of breath and need for oxygen - this is all called bronchiolitis obliterans syndrome, meaning something is causing the airways in his lungs to die off, and 2. The cavitary lesion that was discovered on his CT scan. The docs feel these are two separate issues, but both need to be treated.

Since the biopsy results were inconclusive, there was talk of doing a VATS procedure (3 incisions on his right side to go in and take a chunk of the lesion), however, to do this procedure they have to deflate his right lung, put him on a respirator, and the surgeon feels that is too risky at this point. So no surgery.

The doctors, knowing this was a possibility, have come up with a plan B. They feel very strongly that the bronchiolitis obliterans syndrome (BOS) is caused by graft vs. host disease (GVHD) - Jon had GVHD earlier this year but it affected his skin. The treatment for this is high dose steroids to further suppress his immune system, and the GVHD would calm down, and his lungs would improve. There is another possible reason for the BOS in his lungs, and that is infection. However treatment for GVHD and infection are very different. If they treat for GVHD, and Jon gets worse, they will stop the steroids and treat him for infection. He will be monitored very closely during his treatment.

Now to complicate matters, the cavitary lesion in his right lung is likely some sort of infection. If Jon is being treated for GVHD with high dose steroids, his immune system will be suppressed and an infection could grow rapidly. So, Jon will be treated with other meds to keep the infection under control.

I know this is a lot of information, and we are still trying to process it all. Our prayer at this point is that the treatment for GVHD will be effective and Jon would improve beyond what the doctors expect, and that the cavitary lesion would disappear with meds and not be a further issue. I don't know how long Jon will be in the hospital, but they have hopes of getting him out as soon as they can. I don't know if that is a matter of days or weeks or what, but we're praying it's soon. We will stay in Claremont for a while after his is discharged until we get the OK from the docs to head back to Maine.

We are both weary of it all, but we are so thankful to know a God who is in control of all of this. Thank you all for your kind words and prayers - both are very much appreciated. I will try to keep you all in the loop on this new leg of the journey.