We are officially 3 weeks into this now. Wow is it hard to summarize all the ‘ups and downs’, but I feel like we are in our routine now and feeling optimistic about her numbers and the success of her treatment. 

Our daily routine still consists of an abundant amount of Uno games, fried egg whites (maybe 8 a day), cheese puffs, cheese squares and rest time. Mimi did finally make it and she got her fair share of board and card games this week! Madelyn is also waking more during the night thanks to the steroids. Sometimes hungry and asking for food and sometimes just awake. She is more tired that her old 5-year-old self. She has spurts (sometimes all day, sometimes only a few hours daily) of energy which is when we encourage a small walk around the block or anything that involves getting a breath of fresh air. We did our first “outing” to Costco last week. We overly cleaned the cart with Lysol and Clorox wipes then stuck her in the large part of the shopping basket. We did probably one of our quickest shopping trips there EVER followed by globs of hand sanitizer =) but it was so nice getting her out of the house. 

We are a little worried about all our time at home and re-socializing her when the time comes. We have limited kid guest the last 3 weeks and she hasn’t really played with her brother Parker like she used to. So, it was a special treat to have our family friends (who are healthy and germ free!) come visit this week. It melted our heart to see Madelyn move around and play with Margot.

One of the things that I’ve been struggling with is her physical appearance from the steroids. Her cheeks and belly are quite puffy. We knew she’d gain some weight, but she just doesn’t look the same to me right now. I’m getting used to it but it’s hard to see your child charge so drastically so fast! Another thing we are dreading is the probable hair loss from the chemo. We have been avoiding telling her for so many reasons but finally mustered up the courage and did it yesterday. We have a children’s book that helped us get through it without crying, mostly. She was of course sad, but she handled it much better than we anticipated. 

The last several Fridays have been our days to go back to DeVos for Chemo. However we decided we would all go down as a family to get her port checked Thursday evening then go swim at the hotel! She has had some symptoms (during the week) that made the doctors concerned for her liver function, so they called and told us Wednesday evening to come down Thursday AM first thing for a US of her liver. This meant we probably weren’t going to be able to swim which was a bummer! We also had to break it to her that she couldn’t eat after 2 am. We agreed the starving child on steroids would not handle this well, so we set our alarm for 1 AM and made her a middle of the night meal which consisted of: an egg and cheese roll up, two fried egg whites, Doritos and a cheese square. Breakfast of champions.. She inhaled almost all of it. Then we woke to our second alarm at 5:40 to get us all up and out the door. It was a long day but ended as best as we could have hoped for. Her liver is fine, they cleared her port so she can do full baths and swim and she was able to get her Chemo a day early so we could be done and able to drive home! More good news came with her lab results today. Her numbers keep trending positively and we’re told they are ‘on track.’  We’re now hopeful (and praying) next Friday she learns she is in remission…  Fingers crossed and Happy Thanksgiving J

On a side note, Parker used the couch as a trampoline this week and landed head first on the side table which scored him an impressive black eye. =/