Hello Team Reese. As you might already know from Facebook, Reese came down with Influenza B this past week. We saw it coming because she was exposed to multiple sick kids, so the bone marrow transplant team started her on Tamiflu, prophylactically, on Monday. On Wednesday she woke up with a fever of 103 and she indeed tested positive at her pediatrician’s office. (Yes, she did NOT need to spend the day in the Lurie ER because her port was removed a month prior. My little girl went to a normal pediatrician for her test, what a BLESSING!) Her dose was doubled to a normal treatment dose and we watched and waited. Her course was mild, and in true Reese form, she hardly missed a beat. Our doctor explained that yes many people still get influenza after a flu shot. She told us the flu shot cuts down on the severity and likelihood that you will end up hospitalized. We are giving thanks to the combination of flu shot + Tamiflu. And we are thanking God for always looking after our little girl.
Over the weekend, Quinn asked me for ice chips. Anyone who has been following Reese’s journey since the beginning knows where this is going.
After Reese was discharged from the bone marrow transplant unit, I saved a few of her things. Ok, lots of things. (As my husband would say, I like to keep everything.) But in my defense, it’s all neatly stored in a bin in my office. One of the things I kept were the ice cube trays. There are three of them that produce mini ice cubes of varying shapes and sizes. These ice cube trays ran my life for many months. Were they filled overnight? Is the freezer being cleaned? Did someone take them? (This happened twice.) Were they thrown away? Do I have a nurse that understands the importance, and will she help me? Why all this drama, you ask? Because these little ice cubes are the only thing my sweet little girl could eat for a long time. 1/4 apple juice, 3/4 water. They were the first thing she asked for in the morning and the last thing she did at night. And when a cafeteria worker threw them away, she was without “food” for the 12 hours it took to freeze more. What made these so special? An immunocompromised person can not eat the hospital ice chips. They could be contaminated, and they are made with tap water. Reese’s ice chips were only hers, and were made with bottled water and new apple juice. I watched her day after day, with her little bowl and spoon. They brought her comfort, they were her only food.
So, when Quinn asked me for ice chips over the weekend, I hesitated. Then I went upstairs and dug them out from my BMT bin. A bin I rarely open, because when I do, the tidal wave of emotions pours out, and it’s hard to slow it once it starts.
I froze ice chips, 3/4 apple juice 1/4 water this time (I didn’t want them to be too tart, my kids aren’t used to juice.) Then, the next night, I served them as an it’s-almost-dinner-and-my-kids-cant-wait-so-they-are-begging-for-food snack. I watched Reese carefully, anticipating recognition. I sat with her wondering what her reaction would be.
There was none. I asked her, are these familiar?
Have you ever had these before?
Then I told her, you ate these when you were with Dr Chris in San Francisco.
“I don’t remember that.”
May, June, July, August, September, October, November… Gone. I already knew they were, more than that actually. December, January and February are hazy, too. But I thought taste might trigger something. It didn’t. My little girl lost most of age 4, completely. But we are going to choose to celebrate the fact that she can’t remember, because it was pure awful and she is blessed with the gift of forgetting. And now she is on the other side, my spunky little Kindergartener. Thank God.
Today, Reese’s favorite foods are avocados, chicken, shrimp, sweet potatoes, blueberries, apples and peanut butter, and strawberries. “Super Foods!” she calls them, with gusto. Throw a little ice cream in there and she is very happy! These are the same favorites she had when she was 2 and 3 years old. And those foods bring back plenty of wonderful memories, so we can just leave those ice chips where they are meant to be. In the depths of my memory, back in the BMT in San Francisco.
Today, my mission is still protecting my children. But the assailants are less obvious than leukemia. They are in our house and in our everyday products. I am currently tackling some cleaning agents. This is a BIG deal for me and I’ll post soon. Thank you to everyone who has joined me on this journey. The collaboration of community is incredible. xo