Ready to Grow

These last few days have been filled with phone calls, squaring up the last details of Erica's growth hormone (GH) (Ahh, another acronym)! We are excited to be moving in this very positive direction. Erica will receive a shot everyday, in her leg. We will administer it all at home . . . we'll be trained. I have been trying to make up a song to go along with the routine so that we can make it a pleasant experience. If anyone has any ideas, let me know. Someday she will do the shot herself . . . oh yea, this will be the daily routine for about fifteen years.

The doctor, Dr. Bremer (a new one for those that are familiar with Dr. Taylor), endocrinologist, has estimated that Erica will grow six to seven inches in the first year. This is really a great age to start GH; she should be caught up by the time she goes into kindergarten.

The GVHD continues to improve in her GI and the sore on her tongue is looking a bit better. I wish it would heal faster but . . . I've learned to be patient (kinda).

We are doing some fun kid things lately like weekly story time at the library and a little music class with our friend Emily. We will continue to add group activities but need to be very careful as it is flu season. Get your flu shots! I have been working 4 days a week, mainly from home and we have Jenna here during the day. Erica is loving Jenna, so life around here is getting more "normal".

Thank you for all of your prayers for our family. There is still healing to be done, on many levels, please keep us in your prayers and pray for our friends on the 7th floor of UCD Children's Hospital.

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!