November 4, 2021

*Edited*

I meant to post this update Thursday but apparently only posted the last paragraph! Sorry!

Fear and frustration of the unknown. Some of the most difficult aspects of this process are all the unknowns we have to deal with: waiting almost a week for her official diagnosis in the beginning, not knowing every doctor appointment whether we will stay for a few hours or the whole day, never knowing more then a few days ahead what our schedule will be. Lucy told me yesterday that it's a big reason she has so much anxiety when we are at the doctors. She never knows when they are going to ask her to do some painful thing or be stuck in a hospital for days. It is hard to comfort her because I can't guarantee anything either. Yesterday I had to basically force them to give me an idea of what things would look like beyond this Friday so I would know what city we would be in. It puts new flesh on the phrase "living day by day". Lucy's red blood cell count is very low, so they are going to give her a blood transfusion Friday to keep her counts from going too low from the chemo. On Friday, we will find out whether her counts are low enough to necessitate a platelet infusion. If they are not, we will need to be back Monday morning so they can check on her again. Hopefully, we can make it to Flagstaff for the weekend and the traffic won't be too bad. A few of our trips have taken 5 hours one way because of bad traffic. Lucy has been struggling pretty badly with a rash from her last chemo. It was supposed to have gone down by now but it's still going strong. Her entire body looks like it's been sun burned and is incredibly itchy. We have a few things like medicated baths and calamine lotion that helps. We are hoping it goes away before we have to resort to giving her steroids to fix it. She has been doing so well most of the time with her attitude it would be a shame to add in another chemical hurdle. It's a bit odd waiting for all her counts to drop, knowing it means she will be more vulnerable in so many ways. Please be praying for her protection and for comfort for all of us. It's such an emotional rollercoaster. Monday night we were convinced we were going to have to go back to the hospital because she had a temperature just half a degree Fahrenheit from an official fever. We were so thankful God answered our prayers and gave us rest instead. It's hard for the anxiety not to get to all of us after a while. People keep saying to make sure I take care of myself. But it's hard to figure out what that even looks like. There are so many people giving so much to help us through this and I know it is taxing on us all. I am so thankful that our journey is expected to be a relatively short one, at least. Thank you all for your prayers and support! Prayer needs: - Courage and comfort for our sweet brave girl - Strength, wisdom and patience for all of us helping her through this journey - smooth doctor visits with minimal trauma for Lucy - smooth traveling between here and Flagstaff - Protection for Lucy during this break - Rest and revitalization for us all - Continued healing for Lucy especially of her rash and stomach pain

A bit about David:

This isn't directly about Lucy but I thought you might still appreciate the update.

Our little David is 11 months old today! He is crawling like crazy, and he loves playing with his siblings and cousins. He is starting to maybe say some words like Dada and uses a hand motion for "all done" and claps for "bravo". The most amazing thing is he is so close to walking. Everyday it seems he gets stronger and better balanced. Lucy really enjoys playing with him and she misses him so much when she is in the hospital.