We wanted better news. We planned for better news. We never expected bad news. We went to UCSF Med Center with hopes of Heather becoming a part of a clinical trial - Phase 2 trial - for patients with Stage 2 Astrocytoma. Dr. Susan Chang is heading such a trial. However, after a new MRI and a subsequent meeting with Dr. Chang, we learned that Heather's pathology report shows some characteristics of Stage 3. That means that she cannot participate because Dr. Chang feels Heather would be "under treated" with just Temozolomide; Dr. Chang feels Heather needs radiation and chemo treatment. I must have asked her three different ways before I actually understood: No, Heather does NOT qualify!
So the news isn't good, but our hopes are still high. We LOVED Dr. Susan Chang! Heather has a long, bumpy 15 months ahead of her. She agreed to join a study about the genetic links to brain cancer. Since my father died of primary brain cancer at the age of 43, Heather's involvement in the study might be of some help in the future. If she has whatever the study needs, my girls and I will be next. Then, my sisters and their children.
After three days, we are back in Omaha and already met with Heather's oncologist. Next week we will meet with a radiation oncologist and her regular oncologist as well. I have a lot of questions regarding radiation to the brain! Omaha does not have neuro-oncologists, I guess. I have heard that from two doctors and another brain cancer family. I think that is odd.
I have called a brain tumor support group. I think it is time we join - Heather too. Knowledge is power; and the more we learn, the more we can be proactive. Most importantly, Heather needs to talk with others who are sharing her experiences. I know that depression is something to keep an eye on, so the sooner we get involved, the better.
Tonight I feel depressed myself. I am a helpless mother who cannot protect her child. My husband and I know what we should say to each other, but we don't. We both handle emotions differently. I have to be strong because Heather needs me to be. I have to be strong because my husband needs me to be. So, I will fight along side of Heather and wish that is I who is undergoing the treatment.
Next week we will learn more - too much more! We will learn all about brain radiation. We will learn what all the numbers mean. We will learn about blood counts, medications, etc. - knowledge that I wish I never had to know.
Next message will contain some of our "funnies."
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Thank you for the update. Oh, Sue, this is such a large burden to carry - and - though there's virtue in being the strong one, you can just come in my office and cry, yell, or even laugh through the tears - anytime. I hope that helps in some little, tiny way. - Stephanie
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