******This is for information only! Just want to let everyone know what's going on*******
Currently we have Abigail on the following medications :
-Ranitidine Syrup, (8.7mL) 2x a day - for stomach
-Dexamethasone, (2mL) 2x a day - "yucky" steroid. Recently been reduced to 2mL in the am
and 1.5mL in the pm.
-Sulfamethox, (4mL) 2x a day - preventative pneumonia medicine taken Tue, Wed, and Thur.
-Loperamide, (5mL) as needed - Diarrhea
-Ondansetron, (5mL) - take 2.5mL 30 minutes prior to chemotherapy and as needed
-Veronistat also called SAHA, (3.3mL) taken nightly Sunday through Thursday
She takes the above medications as directed daily. She is in the middle of her third week of radiation therapy as well at the Siteman Cancer Center which is a part of Barnes Jewish Hospital/Washington University. Her treatment is originating from Children's Hospital. All of the hospital's are basically connected together, which is nice. She receives her radiation therapy Monday through Friday at 7:00 am, except for Wednesday when she goes in at 8:00 am. Those are the times we have to be there, but we don't get back for treatment until around 8:00 am and 8:30 am, usually.
We meet our Radiation Oncologist, Dr. David Mansur every Monday when Abby wakes up from her anesthesia. Abby's Nuero-Oncologist are Dr. Joshua Rubin and Dr. Leili D (unknown spelling or pronunciation, sorry), and her Neuro-Surgeon is Dr. David Limbrick. They also have their residents who work closely with them and with us, as well as numerous nurses and technicians. All of her doctors and those involved in her treatment meet weekly to discuss Abigail and her treatment and progression. We are very pleased with our team of doctors and what they are doing for our daughter.
After Abby's radiation is completed on October 1, 2010, she will begin a maintenance schedule of the SAHA. She takes 180 milligrams of the SAHA currently which is being used together with the radiation. It is known that small children can tolerate 230 milligrams safely. That is part of the clinical trial, which is to determine how much SAHA children can safely tolerate together with radiation. So, after her radiation treatment, she will start a 28-day cycle of 230 milligrams of SAHA. These cycles will continue for up to 12 cycles, unless it is determined that it is not doing any good, at which point they will take her off of the chemo.
The SAHA has been used in other tumors and cancers in adults with positive results. This is the first time, with Abby being the very first, that they are using the SAHA with radiation. The goal is that the SAHA will turn off the regenerative part of the cancer DNA, and then the radiation comes in and knocks it out. The maintenance is designed to eradicate any left over tumor and completely wipe it out.
The doctors told us that when they do a scan and they can no longer find any traces of the tumor, then she will be classified as in "remission". If, (when), she is in remission for 3 - 5 years, they will declare her as "cured". We are looking forward to hearing those words!
I hope this clears up or answers any questions that have come up. If it generated any new questions, just let me know.