Jake is doing great! He sits upright now without any help (as long as he is on the ground), and freely laughs and giggles. He talks to himself more now. He is developing so quickly, we can’t believe our eyes! Anyone who saw him in December or early January wouldn’t think it is the same baby.
Jake’s mom is getting stronger. Her recovery from surgery is right on track. There have been several bumps in the road, including about three trips to the emergency room after surgery to deal with a build up of spinal fluid pressure. The pressure has gone down considerably, but this is a problem child that wants to stick around. Her latest MRI shows widened ventricles still (an indication of elevated fluid pressure). Dr. Quiñones (see February 2008 Readers Digest article) will be ready for shunt surgery at a moment’s notice, he told us. Also, she still has some vision problems in her left field of vision. And her headaches are still persistent, but manageable. Everyday brings new hope of improved function, but sometimes frustration at how much time it takes the body to heal itself.
You may recall that the original pathological report from December 28, was that her tumor was a grade II Astrocytoma.
However, we received some troubling news in mid-January. After further review, Peter C. Burger, M.D. at the Division of Neuropathology at Johns Hopkins Hospital – one of about three top experts in the field in the world -- declared that her tumor has mutated to a higher grade, and is now a grade III Astrocytoma, also called Anaplastic Astrocytoma.
Surgery and radiation therapy, with chemotherapy during or following radiation, are the standard treatments. Many clinical trials (experimental treatments) using radiation, chemotherapy, or a combination are available for initial and recurrent anaplastic astrocytomas.
We were told that this tumor is responsive to treatment, which is good. There are some tumors that simply do not respond to treatment. And those patients usually have to go through clinical trials to figure out what will work.
Dr. Larry Kleinberg is Jessica’s radiation oncologist.
So, Jess is now starting chemo therapy in tandem with radiation therapy on a daily basis. Her schedule will include driving to and from Johns Hopkins (40 minutes each way) five days a week, for six weeks. So, she should be done by the end of March.
During the appointments, she will receive a dose of radiation aimed at her right hemisphere. And one hour prior to the radiation appoint she is to take Temozolomide (Temodar). Even though the radiation ends after six weeks, she will still need to take the Temodar April through October.
“Why both chemo and radiation?” you ask.
Since chemotherapy with radiation significantly improves progression free survival and overall survival in glioblastoma multiforme patients (a much more aggressive tumor type), in the experience of her doctors, it will be just as effective for Jess’s case. We are hoping to basically turn off the division of tumor cells.
Her neuro-oncologist, Dr. Jaishri Blakeley, is very hopeful that the treatment will be effective. And this has given us reason to have more hope.
Sean has been granted seven weeks of paid leave from his employer (ADEA). We are benefiting from a paid leave donation bank that Sean could draw up to two months. Sean will be trying to squeeze in about three hours work a day so that he doesn’t use as much paid leave time. Luckily his employer has technology in place that enables Sean to telework. While he is home, Sean will be driving Jess to her appointments each day.
Below are some links to brain tumor organizations:
American Brain Tumor Association
National Brain Tumor Foundation
The Musella Foundation For Brain Tumor Research
Thank you all for you wonderful support!
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