What a week it's been.
Monday: Relapse miscommunication
On Monday I took Grace for her once a month doctor's appointment. After Grace had her blood work done we waited for 1.5 hours. That's pretty long, even on a bad day. Finally I went out into the hallway to ask the nurse practitioner if we could go get lunch and then return.
"Sure," she said, "because Grace has an ANC of 4K and we want to give you answers. It could be a while still." And she left. And my heart dropped.
The only time an ANC should shoot up that quickly is:
1. chemo has been reduced (Grace's had not recently)
2. The body is actively fighting an infection (Grace was not)
3. Leukemia cells have returned (hence my heart dropping)
An hour of trying to stay calm and praying like crazy the nurse practitioner returned and let me know Grace was totally fine. It was a reaction to having a reduced chemo eight weeks ago. Her platelets were fine and her red blood counts were fine. When I started to dry my eyes she realized that she had scared me. She apologized very sincerely.
That hour was the most frightening experience I've had this year. It took several more hours to finish the day and overall we were out that day (with driving time) ten hours.
On Thursday we picked up Grace from school in time to rush her to her local pediatrician appointment so she could get her flu shot. It was then we found out she has a double-ear infection. Thankfully she was able to get at-home antibiotics.
I went to bed really worried that she'd get a fever and we'd have to rush her to CHLA in the night. I woke up every few hours worrying and checking her forehead. Then I had the worst nightmare of my life.
In the dream Grace had a high fever. She was on our couch, crying and screaming because her head hurt so bad. In the dream I was really tired and groggy and was trying to wake up so I could help her. I stumbled to the fridge to get her an icepack for her head and when I gave it to her I realized all her hair was falling out again because the cancer was back.
Needless to say, after I woke up from that nightmare it took me a long time to fall back asleep again.
I think part of the hardship of being a cancer mamma is the stress of knowing that you are your child's first responder. If there is any health issue, it's mom that has to notice the problem (because kids can't often verbalize what's wrong) and then discern if it's a serious issue. Your child's life can literally depend on your reaction.
Granted, there are big problems that are obvious, but by then it might be too late- literally. Bruising, lack of appetite, not pooping or not peeing, too much pooping or too much peeing, nausea- these all can be life threatening situations with cancer kids and they can be very hard to catch. You have to be checking your child's health in the back of your mind at all times, and often at the front of your mind too.
Plus it's hard in maintenance because you're kid looks normal but you still have to think like a cancer mom. You have to be able to go from 0 to 100 at any second- you might have to drop everything to because they have a 101 fever and there's no hesitating- you go straight to the ER. But when life is feeling "normal" it can be hard to shift into that response mode quickly.
I think it's hard too because there's no time to digest. It's always go. I don't think I've dealt with Monday's scare until I started writing this, which is why I decided to blog tonight- to make myself take the time to deal with it. And even still I'm not. I feel like I need to cry to really deal with it, but I don't have it in me to cry tonight.
Anyhow, I mostly just needed to get that out...