Wednesday, January 30, 2013

Brayden's preliminary diagnosis

Brayden had a series of scans yesterday and I still did not know the results late this afternoon. I had gone through all of the appropriate steps. You know the steps, call the clinic, leave a message, get a call back from the nurse, and then maybe get your results. When the nurse called back she said that a nurse practitioner would be calling me back but maybe not until tomorrow afternoon. SERIOUSLY?! Needless to say I have been gradually losing my patience with the health care system, and at 4pm this afternoon I had finally had enough.....
Dr. C had given me his cell number and told me it was fine to call anytime. I opted to text instead of call, as I didn't want to totally interrupt him. About an hour later he called back, actually apologizing for not getting back to me sooner because he was in the OR. How did I get into contact with such a great doctor?
Dr. C proceeded to tell me that he didn't have good news. I managed to fight back the tears and have a decent 5 minute conversation. During this conversation he told me that the mass did unfortunately have neoplastic characteristics and that means this mass is truly a tumor. Based on Brayden's scans yesterday, we were given a diagnosis of "thalamic glioma". Glioma's of the thalamus have a very guarded prognosis because they cannot be removed and radiation is very dangerous as well.
At this point, Dr C is unsure of whether we should proceed with the biopsy or not. Ultimately, that decision will be left up to our personal preference as well as Brayden's oncologist. The biopsy would tell us if the tumor is low grade or high grade, and whether it is benign or malignant. Dr C also said that the first round of treatment is typically the same for both so biopsies are not always done unless it is not responding to the treatment. I have mixed feelings about doing the biopsy. Why put him through a round of chemo if it's a high grade tumor and the treatment won't work? But why put him through surgery if the treatment could work without it?
Dr C will be talking to some other specialists at a meeting on Monday where Brayden's case will be presented. Then we will have some feedback from oncology about what the best way to proceed is. Dr C also recommends we get a second opinion before beginning any treatment. He suggests Boston Childrens Hospital or St Jude Hospital, as they are on the cutting edge of glioma research. I guess this means there will be some traveling in our future.........

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