Wednesday, August 3, 2016

Calm Before the (Steroids) Storm

We had a wonderful trip (differs from a vacation) to North Carolina, and were so grateful to be able to get away for a week in the midst of Ellie's treatment. Once we arrived home, the next Monday Ellie was back at the hospital to finish out her last round of chemo for this treatment period.

Technically, she has about 2 1/2 weeks off of chemo treatments before the next course of treatment begins, but we have still been back at the hospital. Last week Ellie received her 2nd dose of the IVIG (there will be 4 total). She handled everything perfectly fine, and we continue to see a slight improvement in her congestion. 

Earlier this week Ellie had physical therapy. She is so much stronger that she was, but she still seems so fragile. I really feel like she is probably recovered to 95% of where she was before her diagnosis, but she lost several months of further progress while sick. So while her gross motor skills are improving, I feel like for her, she is still a bit behind. Additionally, her chemo meds and steroids can cause joint pain and nerve ending sensitivity. This is why we are continuing with physical therapy once a month. 

Speaking of steroids, Ellie goes back on them tomorrow. This will be the first time she has been on them since the initial month of treatment. It's not quite as much as the first month where she was given them every single day, but it is still substantial. For the next 28 days, she will be a week on steroids, then a week off, then a week on, and finally a week off. 

To be honest, this next period of treatment....well, I'm not looking forward to it. It's called Delayed Intensification, and as one of her doctor's said "It is just like it sounds. It's intense." It lasts for 56 days, and Ellie will be undergoing a lot during that time. It all begins tomorrow, and I will update the blog with her road map for those next two months.

Please pray specifically for Ellie not to have any adverse side effects from the steroids. 

Pray for patience and peace for our entire family.

And please continue to pray for Ellie's complete and permanent healing.

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