3/13/19 Day +316 THE DAY REESE WENT OFF ISOLATION

What does isolation mean for Reese? It means no public places, no crowds, no playgroups, no dirt or mud, no group activities. No restaurants, zoos, stores, or shows. It means that we are in constant fear of fungal infections from breathing in “air”, and it means wearing a mask for protection, and avoiding foods that weren’t cooked specifically by us.

One year ago this week, Reese went into isolation. Just before this, her counts had recovered from her first round of chemo and she was going to the infusion center in Chicago every afternoon for “light chemo”. Her heavy duty regiment was going to begin and we were making the most of her last days of freedom. She went to school for a week (she hadn’t since early Dec.) She met some of her best friends downtown after chemo at American Girl Cafe for a celebratory brunch. She attended the Sacred Heart St Patrick’s Day party and danced all night with her friends. Then isolation began a year ago with a week of chemo inpatient and then neutropenia at home. Her counts recovered before we left for San Francisco on April 15, aboard a leer jet, a private ambulance plane. But we couldn’t chance an infection messing up her transplant, so isolation continued until the day we got on the plane. I remember Reese and Quinn saying goodbye to their best friend Maddie, through the glass of our family room window, while Katie and I cried. She mouthed, I will see you SOON. My heart broke.

For one year Reese has been isolated from the world, for her protection, to her success. Reese has had ONE infection in 1 year. It was rotavirus she caught from her sisters in January (the stomach flu.) She did not suffer one bacterial, fungal, or viral infection inpatient. She had reactivations of old viruses, that can’t be avoided, that caused enough trouble on their own. Reese’s isolation continued as she passed 3 months post transplant…. 6 months… 9 months… because of the incredible amount of immunosuppressants she has been on to “cure” her gvhd. Isolation worked and Reese prevailed.

Today, at 1:00pm, I was informed that REESE IS OFF ISOLATION. I can hardly type the words, each time I try my eyes fill with tears. Reese’s immune system has recently kicked into high gear and it WORKS. Reese not only has CD4s of 324, they are functioning at 50%. SHE DID IT. This little girl is boarding a plane on March 21 to fly back to Winnetka a new girl. With new cells. That know how to do their job. Glory be to God, her protector. This chapter is closing and a new one is opening, right now.

If you know Reese you know that she loves flamingos. Flamingos are the symbol of her discharge, her bell ringing, her freedom. I will tell you the story, the significance of the flamingo. Last April, we arrived in San Francisco a week before Reese was admitted. She had a lot of testing and appointments prior to going inpatient. When we weren’t at the hospital we spent time seeing the sights of SF, making memories. We chose places away from people, outdoor activities in the fresh air. Her restrictions didn’t include outdoor zoos, yet, so we went to the San Francisco Zoo and Reese fell in love with the flamingos. It immediately hit her list of favorites. When she found out she was going to be released in December, the first thing she wanted to do was to go see the flamingos. We knew she couldn’t, because she was still on strict isolation. So we bought flamingo toys and flamingo books and told flamingo stories. The flamingos were alive and well in our world and that was ok. Today, Reese’s “Little Wish” was a pink flamingo bomber jacket to wear home on the airplane. Right after her Little Wish arrived, her doctor told us that she is off isolation. I asked, nervous to hear the answer, does that include zoos? Yes. That’s right, Reese is beside herself with excitement. Tomorrow at 10am she finally has a date with the flamingos!!

How will this new freedom look for Reese in the coming weeks? Reese CAN go to restaurants and she can see her friends. She does not need to wear her mask outside. She will still wear it in crowds, hospitals, etc. She is flying home commercial, and while this is still a less than desirable situation, our doctor did give us his blessing, and she is cleared to travel via United. So she will have her mask on and it will not come off, we will sanitize carefully, and we will get in and out of the airports as quickly as possible. Oh, and there’s a special addition to the day. When she lands, Reese is taking a trolley home from the airport, in true San Francisco style! She knows about it and she is so excited. It just adds to the celebratory nature of this important trip home. Her trolley will drive by her favorite parts of Winnetka before dropping her off at her own yellow house. A dream come true. We go home a week from tomorrow!!!

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