August 25, 2016

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Maintenance Day 504: All’s Well

This week, Scarlett was blessed with two appointment days in a row. Wednesday was her four year well check. Since her pediatrician only sees her once a year, she was amazed with how great Scarlett looked. Her check up was great and Scarlett is really growing! Even with everything going on, Scarlett is still in the 26 percentile for height and 45th for weight. We got Dr. C’s opinion on Scarlett’s feet and her chin rash. We will try a new medication her feet. However, at this point there is no way to tell whether her chin rash was shingles. It was another opportunity for us to thank Dr. C and Dr. H for everything they did to diagnosis Scarlett. Dr. C cried along with me as we recalled those long six weeks. It is a time and a relationship we share that no one else will ever understand.

Today’s appointment was with her oncologist. As we prepared, Scarlett was aware that she could not eat beforehand. She packed herself a snack, her blankie and her big phone. The whole ride there was pretty quiet. She loves being with Child Life and the nurses but she completely understands. Every once in a while, she climbs up on my lap, grabs her blankie, buried her head in me and sits very quietly. She stops answering questions and talking when she knows a poke is coming but she always cooperates.

Scarlett’s labs came back very good today. Her Hgb was higher than I remember at 11.9. Her platelets were stable and her ANC was 2000. Still a little higher than we want so we knew would increase one of her medications. I spoke with Dr. H about my laundry list of issues this month. The most recent is a new rash that developed on her hands yesterday. Dr. H’s first thought is hand foot and mouth. Ugh! Every time we plan to send the kids to Nana and Papa’s house. We are waiting to see her pediatrician tomorrow morning to know for sure. A diagnosis is not necessary as there is nothing to do but it may dissuade her oncologist from admitting her for a fever. Update: we saw the pediatrician and it was NOT hand foot and mouth!

Our plans for this month are to increase the methotrexate dose back to 125% and see what happens. If she tolerates it, great. She’s back on schedule. If she gets sick again, then we know she can’t handle any further dose increases of that and we will increase her mercaptopurine.

In the next month, we will be cheering Nathan Stoffel in the Ironman Wisconsin (which he will do in Scarlett’s honor) and Scarlett will be starting school. This is a big change in our lives. It is the first time that she will be in a big group on a regular basis. We pray for a healthy school year and no sickies!

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