Thank you everyone for reading our story and for the comments of encouragement and thoughts. We have read every one of them and will continue to do so as we move forward so keep them coming – Dan needs all the thoughts he can get!
Dan had his 1 week post op appointment yesterday with Dr. Weingart. It ended up being a very long day since he was running an hour and 45 minutes behind schedule. We had a lot of time to wait in the Hopkins Outpatient Center where the docs take their appointments and believe me when I say, you see things that make you so humble and things we take for granted like being able to walk and talk.
So it started out with Dan getting his staples removed which he was dreading. He kept thinking they would need to put some numbing cream on it but I told him, no, they have a tool like one we use on staples for paper and do it that way. I had 2 c sections and my 6 staples were nothing compared to his almost 50 but at least I can understand how it works! Dan said it didn’t hurt after all and was just a quick pinch and time went fast since Dr. Weingart was talking to us at the time too.
I have to add that every time I meet him, I am more impressed. He is just so nice and caring and gentle and has the best bedside manner. He doesn’t rush through anything, he takes his time and makes you understand every word he throws out at you. He genuinely cares and it shows through and through.
Once the staples were out we sat down to talk since he did receive the full pathology report and told us that what the pathologist saw during surgery was confirmed. Dan’s glioma is “high grade” which is something we did not want to hear. I wanted to go in and have him tell me it was low grade and actually had a dream about it too. A high grade glioma basically means that he has a malignant brain tumor (writing that makes me want to get sick). Gliomas are rated in grades unlike other cancers where they use stages. Gliomas originate in the brain instead of coming from elsewhere in the body which means they don’t spread. High grade gliomas are fast growing and may come back and sometimes more than once. He explained that they cut him in a way to be able to get deeper should Dan have to undergo multiple surgeries down the road – something he has done many many times with other patients since they often recur.
So what next?
Dr. Weingart said “Dan is on the Hopkins bus and they will tell him when to get off.” We have to wait for the oncology team to call us to schedule his treatment plan. The plan will be radiation and chemo for 6 1/2 weeks 5 days per week. He than will immediately begin a more aggressive chemo pill for 6 months. He has to get an MRI one month after his last radiation treatment to see how his body responded and than every 2 months thereafter.
I mentioned in my last post that Dan had his evals for PT and OT which will work on his balance and strength. PT begins today actually.
So right now we just wait for the treatment schedule and try to live our lives in the most positive way that we can.