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Chemo Begins – One Week and Counting

Last Tuesday, March 5, Julia began her new chemo regimen. She will receive 2 weeks of daily infusions of Topotecan (with the weekend off). The third week will be a week off so that she can have her counts rebound. Julia will have two cycles of this treatment and then scans to see if the chemo is having any effect on the tumor. It will be six long weeks to wait, but six weeks to also let this drug do its job.

Julia will be going through the first cycle with IVs placed to deliver the drug. This is difficult on her because the IV will only last a few days and will need to be replaced several times during the week. Last week, Julia’s veins did not cooperate and she had to be stuck several times in order to place the line. Hopefully, this week will be a bit better and we can get through the week with only two IVs.

The Topotecan has left Julia quite tired, coming home from clinic to sleep 4-5 hours. It is hard to see her vibrant spirit suppressed by the drug, too tired to play and spend time doing some of her favorite activities.

Luckily, she has not had too much nausea past the first night. The major side effect has been itchiness – Julia has been complaining that her scalp and skin is very itchy. Warm showers seem to relieve this, but we need to watch that her dressing for the drain for her lung stays protected so we try to limit the time in the shower.

Julia was also running a fever every evening. This started on our first night home from the hospital. The fever always seemed to start around 7 PM and last until around 1 AM. In speaking with the doctors, they seemed to think that this was a “tumor fever”. Luckily, the fevers were controlled with Tylenol and we didn’t need to head to the emergency room.

Since Julia was running a fever, they wanted to run a culture on the fluid from her lung to ensure that she did not have an infection. On Friday, after Julia was done receiving her chemo, the nurses drained her lung and tried to get a culture. There was only about one tablespoon of fluid that came from Julia’s lung. This is a drastic change from the 650ml, 250 ml and 125 ml drained during the last week.

Saturday evening was the first night in a week that Julia did not have fever. What a good sign – it doesn’t appear that Julia has an infection and hopefully it also means that the Topotecan is working and stopping the “Tumor fever”.

Monday, Julia had her IV placed and labs taken to check her blood counts. Just like we had been told, the Topotecan would drastically lower Julia’s counts. Since Friday, her ANC went from 4400 to 246. Julia will continue to get the chemo for the entire week, no matter how low her counts go; only three more chemo treatments to go and then a week for Julia to recuperate.

Next Monday, Julia has an appointment to meet with Dr. Dome at Children’s National Hospital. We need to hope that her counts are good enough to travel and we are able to meet with him for a consultation.

Until then, it is one day at a time. Watching Julia’s face light up when she “face times” with her class for Circle time or speaks to John or James on the phone or sits with her cousin Laura watching a movie during her “first sleepover”. Smiling as I hear her singing to “Wicked” from the back seat of the car as we drive together to clinic. Praying that the Topotecan is working.

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