BMT +60 (Saturday, day 76)

Friday was clinic day. Naomi’s ANC is up to 930. Her platelets were 117 and hemoglobin 10.1. Everything continues to climb! I talked briefly to our Nurse Practitioner about starting to get a plan in place for us to go home.  I told her that when Aaron visits next time we would like to look at a calendar and put together a rough plan and that we would like to continue decreasing IV fluids and preparing for Naomi to wean to only the meds necessary to go home. She is going to arrange a meeting with the Dr for us.   

Unfortunately Naomi’s adenovirus high sensity scan came back positive again. It was the same positive result as last week with a low detection in the blood. We will just sit on those results for the weekend and keep watching for symptoms. Naomi continues to be symptom and fever free. Her increasing counts are also a good sign of no infection. 

After the heavy winds on Tuesday, Sinéad and Caitríona have had a rough week with what I think are allergies. A clear runny nose that, for Caitríona, has become a cough. I used the nose frieda with Sinéad and am pretty sure it helped her recover way more quickly. It would make sense to me that it is allergy related because Naomi did not get it – she is on zyrtec. 

More runny noses and coughs for Cait and Sinéad have meant isolation in our room. While I don’t think they are contagious, I still have to manage them as if they are contagious. We did finally get outside to the playset on Friday since the sun came out and the the weather was warmer. It was a beautiful day, even if a bit on the cool side, and helped to pick up our moods. I never imagined that keeping Sinéad and Caitríona here would cause so much more isolation for me and Naomi.  She and I are struggling most days to stay in good moods. We both have been here so long and miss home and the people there so much that it hurts. I stayed busy a few days this week putting together grade sheets and having meetings with each child at home to help them as needed for school work and go over things that needed to be graded/edited. 

I have been trying NOT to count the days. Most days I just ignore the calendar and try to forget what day it is. We just do what needs to be done next to get through the day and live in the moment. 

I am cautious not to take Naomi’s improving health for granted. While our time here is difficult with so much down time, her health is improving and that is ultimately why we came here. It is a good sign, I think, that she is starting to verbalize her desire to go home. It has provided us opportunity to remember to have her drink more throughout the day, get sleep to rest and continue to have climbing blood counts and to make good food choices. There is plenty of opportunity here for junk food choices as we always have desserts and treats in reach. The goal of going home is starting to feel closer. But each day feels like an eternity. Coloring, games, school work, meal times, tv time, puzzles, working out, etc are all things that help us fill the day but nothing beats home or can take away sting of missing the people there. 

One thought on “BMT +60 (Saturday, day 76)

  1. aw, i can only imagine how hard it is to be so far from home and loved ones. just know that you are not forgotten. we think of you often and pray for Naomi’s recovery daily. Hang in there…you’ll be back before you know it, even though it seems an eternity. sending you all hugs!!

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