Today, Charlotte and I went back to the oncology clinic. It was her first visit since December 20th. We started another phase of "delayed intensification" (days 29-57) I thought we were done with the delayed intensification phase, but it is apparently a multi-step section of treatment.
Charlotte had another lumbar puncture. They returned to using the chemo "Methotrexate" in her spinal fluid. This is the drug they suspect caused the seizure in early November. In speaking with her oncologist, Dr. Barnett seems very confident that she will be fine, as she hasn't received a dose of methotrexate since that time. Whereas, prior to that seizure, she had received about 5 spinal taps in a 8 week period and Methotrexate was administered with each of those spinal taps. He theorizes that she will do fine, because there won't be as much of the drug in her system. Regardless, Sean and I are watching to see if she has another seizure. If she does, they will discontinue Methotrexate and substitute another drug.
Along with her lumbar puncture, they gave her a bag of fluids through her IV and another chemo drug called "Cytoxan". This drug can cause nausea, so they also dosed her with Zofran to help with that. They want us to push fluids today. The Cytoxan (especially at the higher dosages) can cause her bladder to bleed. The nurse stated that what they have to do to fix bleeding bladder is very unpleasant for the kids. Charly isn't receiving a "higher dose", but it can still irritate her bladder, so they gave her a bag of fluids to help her flush it out quickly. She also received a dose of the chemo called "ARA-C" (pronounced ara-see), and given a prescription for a fourth chemo called "Thioguanine". She is supposed to take the Thioguanine nightly for the next couple weeks. Charly is not supposed to eat for a couple hours before the pill and at least an hour after - and not take the pill with milk, as dairy can interfere with it. It will also cause nausea, so they recommend taking it before bedtime, so she will hopefully sleep through her tummy ache. She will take this chemo orally for the next two weeks. We had to fill the Rx for Thioguanine at Primary's Pharmacy, since most pharmacies don't keep it in stock and would have to order it in. I hate filling prescriptions at the hospital, mostly because I'm marching Charlotte through the hallways to go pick it up. There are sick people everywhere in that place! However, that's why we have a mask for her to wear whenever she enters the hospital.
When they finished all the IV meds, they flushed her port, and left her accessed (the tube is still connected to her port and dangling down her front). A home health nurse will come and administer her additional doses of the ARA-C chemo through her IV at home on Tuesday, Wednesday, and Thursday. The nurse will deaccess her port on Thursday. Next Monday, home health will come again to draw blood for a CBC, give her another dose of ARA-C and leave her accessed for three more daily doses of ARA-C. The oncology staff warned that at about day 14, Charlotte's counts will drop again. In anticipation of this, they have a home health nurse scheduled to come every Monday this month to draw blood for a CBC. She may need a blood transfusion or a platelet transfusion if her counts drop low enough. So far, she hasn't needed a transfusion since the first month of chemo.
If Charly is able to maintain her RBC and platelets, she won't go back to the oncology clinic until the beginning of February. Everything will be done at home. They even mentioned that some parents opt to administer the IV medication themselves. The home health nurse will probably talk that over with Sean when she comes tomorrow.
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