The Rx Update

For the past couple of months, Erica has been toughing it out with GVHD of the GI Track. The GVHD is obvious by looking at her "poops" and there are sores in her mouth. We thought that this would be a relatively easy fix with steroids but even with the increase in steroids, we did not see any improvement. We really wanted to avoid an intestinal biopsy so we were all (doctors too) very patient. Last week we had to report that it was looking worse . . . at both ends. Erica was given a topical steroid for her tongue ; we had to give this to her three times per day. A few days into in it, there were no changes. So, with the help of the pediatric oncology pharmacist, Kaye and Dr. Taylor, Erica was prescribed an experimental way of administering a particular drug. Meaning, the drug isn't new but it is not typically prescribed for this condition nor is it typically compounded in this fashion . . . . oh well. It's working. Dare I say it . . . things really do seem to be getting better.

Once this clears up, and I am sure that it will, the goal will be to taper down the oral steroid that she is still on. The hope, of course, is that she can be off of the steroids and be free from GVHD. Her blood work continues to look good and her liver counts are basically at a "normal" level; yeah! The other medications that she is on are fairly long-term, which is ok, what would Erica do without her "buggies" (don't ask).

Personally, I am doing much better. I made it through the relapse anniversary and the "total recall" that was going on in my head has subsided. I just went through such a powerful stage of remembering so many events and moments from the past two years . . . it was so intense. I wonder if it happens to most parents who go through this; I assume it does. We can only process so much at a time.

Our family has had so much fun lately. We have been able to take Erica outside and actually allow her to touch things and be around kids. She is loving all of her play time and because of it, she is so much more active and energetic.

Insurance forms are getting finished up and within the next couple of weeks, Erica will start the growth hormone. This is a big step and an even bigger commitment, but this is what Erica needs. All of the tests confirmed that her body is not producing the hormone, likely adversely affected by the cranial radiation. We knew that was a risk . . . and this is the remedy. We are so excited to see her grow.

Thank you for your continued prayers. Our family is doing really well and we have definitely found a new sense of freedom with the ability to allow Erica to participate in normal, toddler activities . . . . like "trick-or-treating". Happy Fall!