Beginning Stage 3 - Interim Maintenance

Yesterday, a home health nurse came to our house and took a blood sample for CBC (Complete Blood Count). They take the blood, analyze it to see where Charlotte is, and then decide if she's ready to go forward or not. Once again, she passed with flying colors. She was cleared to begin the next stage of chemo. If her counts were not acceptable, she would have received a respite from chemo to allow her body time to build its defenses.

This third stage is called Interim Maintenance. Charly will go in every 10 days for the next 4 appointments. At these appointments she will be given more Vincristine - the chemo that causes jaw pain and constipation - and Methotrexate. She had Vincristine given to her weekly the first month during her induction phase. Thus far, Methotrexate has only been given in a very small dose in her spinal fluid. Now it will be administered via her port in a larger dose. Before each appointment, the doctors will analyze her CBC and up her dosage of Methotrexate depending on her tolerance. Their goal is to give her the most she can tolerate. This Methotrexate will cause mouth sores. How severe they will be differs kid to kid, so we don't know if Charly will luck out and have a few canker sores or if it will be worse. She will also experience nausea and some kids get a rash or blisters on their hands and feet. We just keep an eye on her and see what will happen. If she is nauseous, we have Zofran, a drug they give pregnant mothers who are having a tough time with morning sickness. The oncologist says she should hopefully only be nauseous the day of chemo.

Since each appointment is "count dependent", if her counts don't look good, they will stop treatment and reschedule. Her ANC level must be at least 750 (ANC is how they measure her immunity levels), and her platelets need to be 75 or higher. As explained to me today, November and December will be hard for Charly. The chemo drugs seem to have a lot of side affects that don't sound nice. After we finish Interim Maintenance, they start the phase titled, "Delayed Intensification". That doesn't sound fun.

I had a discussion with the doctor about appropriate activities for Charlotte. Sean and I have been unsure about what is safe for Charly to do. Sean is certainly super cautious. I wanted to make sure I wasn't being too cavalier about having friends over to play Wii, or taking her to the park. Aunt Heather invited us to meet them at Gardner Village to see the witches, and there is the upcoming Light the Night Walk. The doctor says all those activities should be fine. If they tell us her counts are good, and she feels well, we are good to go.

Few questions I asked the oncologist today:


I know the goal is to get the leukemia kids to achieve remission by day 29. How many kids achieve remission by day 29? The answer is 85-90% of the kids starting chemo achieve remission.

We were warned that if Charly gets sick, she would be admitted to the hospital. Now that we experienced her cold last month, we know that isn't true. I asked what factors make them decide to admit her if she's sick, and on average, how many hospital admissions does a typical leukemia patient have during treatment. The answer is: it's all count dependent. If her ANC (her immunity levels) are higher, they may just give her IV antibiotics, and send her home for us to take care of her. If her ANC is low and she's running a fever, she will most likely be admitted. Typically, a leukemia patient has 2-3 hospital admissions during their chemo treatment. They keep the child there until they are sure the reason for the fever is viral and not bacterial (with blood tests and microscopes).

The oncologist warned me that while it is good to avoid known sick people and large crowds, they have found that the danger comes from the patient. They need clean behinds, clean bodies, and clean mouths. The most serious ailments occur from bacteria from the patient's body. That's why they want Charly bathing daily and brushing her teeth 3 times a day.

After her chemo, we met Aunt Heather and Aunt Elisa at Gardner Village. We spent an hour with them, then ran home to pick up Naomi after school. After meeting up with Naomi, Charlotte wanted to go outside and ride her bike. We spent the next hour circling the block with Cooper McDaniel and the Hurtado kids. To keep up with them, I had to pull out my bike and ride along. When I told her I needed her to stop so we could go in and make dinner, she refused. It took another 3 circles around the block before she agreed to get off the bike and play with Tasha Hurtado while I cooked dinner. It's now bed time, and so far no signs of jaw pain or nausea yet. Knock on wood.