Oncology visit to discuss last week's incident

Alycia:

Today Sean and I went to the oncology clinic to figure out what last week's incident means to the future of Charlotte's chemo plans. The answer - not much. The attending oncologist came in, already briefed about last week's emergency. Charlotte declared she's tired talking about her seizure, so the child life specialist sat and distracted her by playing doctor with a doll and all the same medical devices they use in the clinic. While Charlotte put in a port access into her own stuffed Cheetah, hooked it up to an IV and blood pressure cuff, we talked with Dr. Barnett.

Dr. Barnett assured us that he thinks we made the right decision to watch Charlotte. He is convinced the seizure was due to the chemo meds. Usually, he explained, the kids who do have a seizure, do so during the stage we had the month before, we she had a lumbar puncture (LP) every week and chemo placed into her spinal fluid. Even though that's not when this occurred, he thinks the seizure is the brain's reaction to the chemicals. When the kids do seize, it is usually within 5-7 days after the LP. Her MRI looked great, and the EEG "different activity" he strongly believes is due to the seizure, and not to some underlying seizure tendencies. His recommendation was to use another chemo for the next LP on December 5th. I can't remember the drug name right now...it starts with an "A". Then, we will return to the regular spinal chemo, methotrexate, for the LP after. The replacement chemo is the same they used for the very first LP, before they knew if Charlotte had ALL or AML, which is standard protocol. It is my understanding that kids with ALL are treated with methotrexate after that point. Kids with AML continue to use the other. While Dr. Barnett explained that for some kids, their reaction to methotrexate is such that they decide to permanently switch chemos, but there isn't enough statistical data that shows positive outcomes when compared to using methotrexate, so he'd prefer to give her a "rest" from the spinal methotrexate, and go back to it at the end of December.

We then went and received the last dose of "Interim Maintenance" chemo. Our next appointment won't be until December 6. At that time, we begin "Delayed Intensification". It involves steroids again, on 7 days, off 7 days. We have chemo on day 1, day 4, day 8, and day 15. When I asked what the side affects are, they did say she will probably lose what little fuzz she still has left on her head. She will also experience more nausea than she probably has in the past.

Currently, Charlotte is no worse for the wear from our adventure last week. She is happy, healthy, and still the same person she always has been. Her immunity levels are almost what a normal person's are. I would say it is accurate to say that Sean and I were the most traumatized.

My plan is to stay cool, and index for blessings... (inside 29th ward reference :-) ).

At the clinic, getting chemo. Charlotte is on her 3rd art project, a Thankful Tree. Each leaf has an item she is thankful for written on it. The first leaf was "Mom". She knows who cooks her dinner!

Sean:
Charlotte's clinic visit went well today. The doctor said most likely her seizure last Wednesday was caused by the Methotrexate chemo she's been taking, which is a normal reaction from some patients - still scary though. Anyway, today's visit and chemo dose marked the last of the inter maintenance phase. She now gets a two week break before she starts the next phase (2 months worth) called delayed intensification. Her energy levels are still very high and she's still doing rather well.

A special thank you to everyone for your prayers, support, care packages, words of encouragement, special fasts, donations, and love.