Tag Archives: Failure to thrive

Medical Update: What would you do without an experienced guide?

This morning as I was unable to sleep, I found myself thinking back on the white water rafting trip our family took in Colorado years ago. As first time rafters, we were both excited and apprehensive about the moment by moment thrills of the experience. Our experienced guide, having been down this river many times, had both the mindset of being calm – because he knew what was around the bend – and also vigilant, because he knew the potential dangers that could arise at any moment. That’s how it is with me and my medical team. Being my first (and hopefully only) time down this river, I tend to see things through the experience of my current symptoms. My experienced and caring medical team is concerned with saving my life. The team agrees that my recovery is well ahead of the curve (thank you God and prayer partners!); but they have their eyes somberly set on what’s around the bend, especially in the next 6-18 months. This is the time it will take for my body to fully rebuild the immune system and regain strength and deal with oncoming threats.

An interesting component of the treatment plan is that while the goal is to grow the immune system, the approach is actually to suppress it in the beginning so my donor cells don’t attack my body. This is called Graft Versus Host Disease (GVHD) and was what led to my Failure To Thrive diagnosis the three summer months when I couldn’t eat or get much beyond bed or recliner. So I take daily medications to prevent my immune system from functioning even as optimally as it could with currently limited resources. The team monitors the degree of ‘fighting’ that goes on in my body, trying to maintain a balance. Some fighting is good; too much is dangerous. Gradually, they will reduce the suppressing medications to let my body take on more of the fight on its own. I am also working to get off the steroids that have helped me overcome the Failure to Thrive condition but have also wreaked havoc with other mental and physical functioning. Nearly seven months post stem cell transplant, I still make trips every two weeks to the U of I Hospitals for blood tests, lung treatments and follow-up consultation.

What’s around the bend? Continual protection against infections and increasing endurance and strength, and hopefully regain mental capacity; and trusting our loving God to guide us through the waters as we also journey into our new mission field. It is an amazing journey! I pray yours will be less dramatic but no less exciting and rewarding.

Finally an answer (maybe) – med update

Nearly five months after Stem cell Transplant: Now that I’ve lost 30 pounds to reach my junior high school weight, they’ve diagnosed me with Failure to Thrive and I’ll be starting on a double steroid regime. Their primary suspect is GVHD (graft versus host disease). To be sure they were going to have me swallow a camera-pill that takes pictures all the way down the GI tract. (Isn’t that wild?!) But whatever they found, I would have to do the steroids anyway, so we decided to go the steroid route. That means going back to blood sugar readings twice a day. But hopefully we’ll skip another round of temporary diabetes. I’ve not been happy with the side effects to steroids so far, but if it allows me to eat I will have more energy. Blood counts are all up if not normal. So if we can resolve the nutrition problem, all should be well…or at least better!

Thanks to God for His sustaining power and for the medical solutions He grants. Thanks to everyone for ongoing prayers.