January clinic visit

Serenity had her monthly appointment at the clinic on the 20th. I was anxious to learn what her ANC was because of her previous dentist appointment. Fortunately, it was 2.8 which is pretty high for a cancer kid. So high, in fact, that they decided to bump her chemo up to 75%. She was on 100% chemo for months originally, so it makes me a teensy bit nervous when they have her on less than a full dose. (Her ANC should ideally fall within a certain range, so the chemo is adjusted based on her ANC. Too little and she’s not getting enough to fight the cancer; too much and her counts will crash. It’s a delicate balance.)

The clinic was super busy when we were there. Our provider told me that there were 6 new cases that day! It’s always a weird feeling to see newly diagnosed families in the waiting room. I hear the things they say and a part of me wants to interrupt and tell them what they’re really in for for the next 2-3 years. Instead I keep my mouth shut and mind my own business. 😉

Serenity had her lumbar puncture after our clinic visit. For the first time the medicine the anesthesiologist gave her didn’t put her to sleep immediately, which unnerved me. After a few seconds he drew it back through her line and pushed it again. This time it made her sleepy, but she was still sitting up and looking at me, and she started to cry. Usually she falls asleep instantly. He gave her another small dose and she continued to cry and call out for me as I laid her down on the bed. He put the oxygen mask on her face and she was writhing around on the bed and crying softly. It was the saddest thing. At that point they asked me to leave so they could start her procedure, so I did, but it was hard. I knew she was too out of it to know what was happening, and would be asleep in a few more seconds, but it was hard to leave her there calling for me. 🙁 She did great through the procedure and woke up quickly afterward, still calling for me. We had an incident when Indigo broke her jaw a few months ago and kept waking up through the anesthesia, despite the fact that they kept increasing her dose. I was afraid that Serenity would wake up during her lumbar puncture (spinal tap) and maybe she did. These kids go through so much and just take it all in stride. It makes me proud of her, and in awe, and breaks my heart all at the same time.

After her lumbar puncture, where they put chemo into her spinal column and draw out some fluid to test for blasts, Serenity was soon back to normal although a little subdued. She’d been fasting all day for her procedure and it was funny to hear her talk about all the different things she suddenly wanted to eat.

We went back up to the clinic for her vincristine in her port, and then home. I was supposed to start her back on dexamethasone, which helps the vincristine cross the blood barrier, and I forgot! I didn’t remember for 2 days, and I am just kicking myself for that. They even reminded me at the clinic. Every once in a while we make a mistake on her medications – and while I know that it happens, and it’s even factored into the 2-3 year treatment protocol – there is always a small part of me that knows that if she were to relapse, I would always hold myself responsible.

This week we’ve been dealing with a VERY emotional and clingy Steroid Girl. Serenity gets hysterical very quickly on steroids and stops speaking in words we can understand. She throws herself on the floor and screams unintelligibly while Phil and I rally around trying to guess what she is upset about. This week has been harder than most. I’m sure it’s not helped by the fact that she doesn’t feel well. The kids have all come down with a horrible cough and cold as well. Phil and I are teetering on the brink of becoming sick and I just don’t know what we’ll do if it happens. I’m so exhausted and worn out just trying to take care of everybody that I can’t get sick myself.