Maintenance Day 96: Social life

For the past ten days we have taken advantage of nice weather, visiting family members, and free time. We were able to go to bonfires and a wedding. Scarlett and Evie got to “meet” cousins that they don’t remember meeting. We caught up with family we haven’t seen since Scarlett got sick. It has been nice to just go on with life.

It was a really busy weekend. Friday we went biking, go-carting and mini golfing. We ate ice cream. We laughed and played and had a ton of fun. Saturday we cleaned the yard, planted a fairy garden then went to a wedding and played games, danced, ate a lot of candy and talked to a lot of people that we haven’t seen in over a year. Sunday we went boating, swinging, played with more twins and stayed up way too late. And Monday we spent the day at Bay Beach.

On Thursday, Scarlett has a dentist appointment. Before her appointment we scheduled labs just to be sure that she was healthy enough for invasive work. Then, an hour before her appointment, we would give her a dose of antibiotics as an extra precaution. So she had her “poke” this morning and we headed to Bay Beach. We started going on rides and laughing and smiling. We took a break to get some snacks and water. Auntie took her to get a Sno-cone and Brock’s phone rang.

Unfortunately, Scarlett’s labs were not good. She is neutropenic again. Her ANC was 152. (Her goal is 1500 and anything less than 500 is very bad). Which meant that we had to pack her up immediately and leave the park. We had to explain to our three-year-old why she couldn’t go on any more rides. Because cancer f#*%ing sucks and you, my darling, cannot catch a break. So Auntie took her away and we spent the rest of the day with Tate and Evie and missing our sweet Scarlett. But that was just the immediate problem.

This is Scarlett’s second neutropenic episode in maintenance. Which means that her dose will now have to be adjusted. She will again have her doses held until her ANC is above 750. Then her doses of both oral chemo meds will be cut in half. Her dose will be adjusted periodically as her body can handle it.

The fear is always relapse. Every day, that is my biggest fear. Every day that she is not taking her meds is a day that her body has a chance to make leukemic cells. Every day that it takes to find “her” dose is a day that she isn’t getting enough meds. And every week until we find that dose is another poke for her.

My mind begins to think of every “what if”. These are the times when I really second guess opting out of radiation. What if the radiation would have kept the leukemia at bay long enough to find the right dose? How many people did we come into contact this week that may have exposed her to something? How are we supposed to know when her ANC is low? Are we supposed to stay home all day, every day for the next 18 months because we can’t do labs every day? I can’t imagine what it’s like to send a child to school and worry about having “secret neutropenia”. Brock and I don’t go out. We don’t see a lot of friends. But we enjoy taking our kids out to experience new things. Are we supposed to give that up for the next 18 months too? Or are we just supposed to continue to live life? There is no instruction manual for a child with cancer.

The biggest question of all could not be answered today. Does changing her dose increase her risk of relapse? Our nurse couldn’t answer that. Or wouldn’t. We may have to wait another three weeks for that discussion. And for the next week or two, we wait on bated breath to see if we exposed her to something that sends her back to the hospital.