Today was a big day. Mireya had clinic, which was full of shifts and turns, but today was also her first day of school with her teacher. Clinic we won’t spend to much time on, we’ll just give it to the Lord and continue to trust him to work it out. A second chimerism test showed a significant jump in the presence of Mireya’s cells which has us all concerned. As a result, Reya was taken off of one of her immunosuppresive medications. She has been taking two and it is likely those meds are also suppressing Jalen’s cells. Reya was given GCSF today to see if we can boost her counts. Her white count took a surprising dip to 1.8 (ugh). That pesky cough has also intensified. We are scheduled to have a chest scan done at our next appointment. Infections can crush your white count. Take in consideration a white count that is already significantly low, add illness and the outcome is a severely taxed system that can collapse at any moment. Prayerfully the GCSF makes a difference. A additional chimerism test was ordered to see if dialing back the suppresion medication over the last week has made any difference in the ratio of cells. Another concern with eliminating the suppression medication is the increased chances of GVHD. Again, we’re giving it to the Lord and believing he will work it out.
Mireya was super excited to start Homebound with her teacher, Ms. Saum. They worked on several projects, read books, drew pictures for a book the class is working on and talked about the Constitution. Jalen’s class is also working on the constitution. Mireya thought it was cool ‘she’ was working on something Jalen was also learning about in his class. Ms. Saum told the class she would be seeing Mireya after school. They were all very excited and inquisitive about the classmate they have yet to see or meet. One of the projects Mireya worked on was a “Me” drawing. Her “Me’ drawing was so cute. She drew a picture of her dancing. It almost looked like she was floating in air. The part that tickled me the most is she highlighted the ‘fabulous’ shoes she drew in picture. I’m glad Ms. Saum will be able to share Mireya’s work in class so her classmates will get a sense of who she is…my little dancer with impeccable fashion sense.
Mireya is scheduled to received one hour of instruction each day (this can be altered, as needed). After a long day in clinic, it was apparent toward the end of the hour, Mireya was tiring of the process. Overall, Day 1 was a huge success. I’ll have to find something really fun and special to do with Makinley during Mireya’s Homebound sessions, because she was having a bit of a struggle with not being ‘included’ in the lesson plan. Ms. Saum will also be introducing the class to “The Monkey” this week. We’re so thankful Mireya can receive instruction and participate in school through this program until her health improves. We’re looking forward to sharing a favorable report after our next appointment this week. Continued prayers as we toe the line and keep the pace.
When you pass through the waters, I will be with you, and through the rivers, they will not overwhelm you. When you walk through the fire, you will not be burned or scorched, nor will the flame kindle upon you. Isaiah 43:2