My Dear Family and Friends,

I’m writing to you tonight to ask for your prayers for Jeff, Nathan and I as we face a new fight in the post-bmt battle. In simple terms, graft-vs-host disease (gvhd) is the fight of my donor’s cells (the graft) fighing off my old cells (the host). Having gvhd is a continued sign that the transplant is working but it can manifest itself in a variety of ways that need treatment.

On Monday, June 4th, we will be meeting with Dr. Kuruvella to discuss the results of an MRI taken last week on my brain. Over the last few months I have had difficulty with retrieving words in conversation and an increase in memory loss. This may just be a result of years worth cancer treatments and the bmt but the MRI will give us some results.

Also, later that morning, we will meet with Dr. Barth at TGH. As well as the “brain fog” I have had difficulties with chronic gvhd of the skin. This has shown itself in changes in my skin pigmentation, decreased mobility and a “thickening of the skin”. After poor results with a treatment of prednisone, a new treatment has been suggested called photo apheresis (pronounced af-RE-sis).

From our conversations with my doctors, this is an excellent, promising treatment for chronic skin gvhd. In VERY simple terms, photo apheresis is an IV procedure where my blood is taken out, exposed to UV rays and then returned to my body.

While this is the best treatment for me, it’s not without it’s drawbacks. Photo apheresis takes a lot of time. To begin with, the treatments would be 2-3 times a week, every other week. The duration of the photo apheresis depends on each patient but could be anywhere from 6 months to 2 years. I would also require a central IV line (like the hickman that I had throughout the bmt) which carries the risk of infection.

Would you pray for Jeff and I as we meet with the doctors on Monday that we would have wisdom about how we should proceed?

What can I say to encourage you here? Even through the initial tears, overwhelmed by the possibility of this new treatment I told Jeff that my tears were not a result of being angry at God or questioning His goodness to me.

I have been reflecting on these verses in the last few days.

Psalm 73: 24-26, 28

You guide me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. But for me, how good it is to be near God! I have made the Sovereign LORD my shelter, and I will tell everyone about the wonderful things you do.

And also Isaiah 40 (the whole thing but I’ll write out these verse for you…)

Have you never heard? Have you never understood? The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.

With continued joy,

Heather