Charlotte had a 9:30 appointment at the oncology clinic this morning for a lumbar puncture and a dose of chemo. I was unsure of what came next, so I arranged to have the day off and attend the visit. It was just as well, Sean has succumbed to a cold and wasn't in any shape to take her in.
The road map for the next 60 days is for the Interim Maintenance II phase. We already went through Interim Maintenance I phase. Basically, it is the exact same thing we did last time. Charly goes in every 10 days to Primary Children's for chemo - Methotrexate and Vincristin. Each time she goes in, the dosage of Methotrexate is increased. This time, they started her dosage of Methotrexate to be 2/3 the dosage amount they used for the final dose of Interim Maintenance I. They increase the chemo with each visit to the most she can handle. Her counts will go down. Interim Maintenance II phase lasts roughly 60 days. On day 30, she has another lumbar puncture. (I keep getting people who ask me what that is... It's a spinal tap. They pull spinal fluid to examine for cancer cells, and insert chemo into her spinal fluid at the same time). Each dose of chemo is "count dependent". Her ANC must be 750 or they won't give her chemo. If she runs into times where her counts below 750, they will delay chemo a few days until it comes back up, which will extend the length of the phase. With Interim Maintenance I, her ANC never dropped below 750. The doctor suspects she will finish this phase with no problems with her ANC this time to.
Interim Maintenance was the phase that Charlotte had her seizure. The oncologist has told us that Methotrexate in the spinal fluid has been known to cause seizures in about 10% of the kids. The methotrexate administered through her port IV is not known to cause the seizures...It is a worry, but it is my hope that we will continue to see no problems.
After Interim Maintenance II, Charly will be in MAINTENANCE. This will mark the beginning of the "easy part". Charly will only visit the clinic monthly for Vincristine chemo. Otherwise, she will be taking a low-dosage chemo in pill form at home every night. She will have a lumbar puncture every 3 months, to ensure no cancer is in her spinal fluid. They also put a little chemo in her spinal fluid at the same time. It's a relief to hear it's so close. I asked the doctor, "She won't ever have to take steroids again, right?" Apparently that's wrong. She will still take steroids, for only about 5 days each month or so. By the time they start affecting her appetite and moods, she'll be back off them.
Maintenance lasts for 2 years after when she finished her Consolidation phase - (that was October last year). Their goal is to keep her counts lower, around 1000 for her ANC (normal person's is around 1500). The ANC is the She will be strong enough to fight infections for the most part, but there may be a time if she is fighting a bug that her counts will drop, and we'll have to watch her to make sure she doesn't develop a serious infection.
I asked if that meant she was still fine to go to 2nd grade next year. The doctor said a lot of kids are able to go to school for the most part. I wish I could remember how he worded it exactly. The biggest obstacle for cancer kids is that school wears them out. It sounds like we may expect that she needs some time off now and then. Already, I can see she'll be missing days for chemo visits, and if she feels worn down from the chemo, she may need some time afterwards to recoup. However, watching how she has been after chemo every time this past 5 months, I wonder if she will allow it to hold her back at all.
After the "what comes next" discussion with the doctor, Charly and I crossed the hall for her lumbar puncture. Usually, we just have a nurse practitioner who does the lumbar puncture. Today, her resident, Dr. Maese did the LP. Dr. Barnett, her attending, also popped his head in at the end when Charly was coming out of the Versed/Ketamine cocktail. Charlotte is super hilarious and silly when she is high. She sighed dreamily and said, "I'm okay with LPs mom". Dr. Barnett and the nurses couldn't stop laughing. Dr. Barnett turned to me and said, "You really should bring a camera in and film her sometime." I already did it before once, catching just the tail end of her coming out, but I should try for filming the whole experience.
Charly's next appointment is not for another 10 days. We picked up Chik-Fil-A for lunch, since she's not allowed to eat before her lumbar puncture. I dropped her back home with Sean, and took my car in for my emissions, new tires, a recall repair... it looks like I'll be finishing my afternoon at the dealership with a book.
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