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Some pathology came back today

Posted on May 20, 2016 by | 0 comments

Today was a long and tiring day. It’s been so hard to see Mac like this. I just love him so much. I find myself really trying to take in my time with him. I love when he holds my face and kisses me on the cheek. It was an emotional day for me to begin with. This morning they came by to say that they didn’t have any new information and if they didn’t have it today by 5, it would be Monday until the pathologists would be back to look at it. By 2 I was feeling discouraged that there would be no news but by 3:30 the doctors came to talk.

The first answer came by which doctor came to talk to us. It was Dr Green the neuro-oncologist. At that point I knew his tumors weren’t leukemia because if they were, one of his previous doctors would have come. So we sat down with Dr Green the neuro-oncologist, Dr O’neil the neuro-surgeon and Melissa a neuro-oncology nurse.

Here’s what they know. This tumor originated from his brain. It has been categorized as a glioma. Everything from Mac’s medical history with AML to the actual presentation of the tumors is unusual. At this time they cannot further categorize his tumors. Pathologists and doctors are scratching their heads. Under the microscope appears to have certain characteristics but the genetic testing they did show contradicting characteristics. These tumors are classified as low-grade, with a better prognosis or high-grade, with a much worse prognosis, but they don’t know what Mac’s is yet.

Dr O’neil said that anyone to do with any oncology in the hospital knows about Mac. The plan is to do brain surgery on Wednesday. It will be a 6-8 hour surgery to go after the large tumor in the middle of his brain. The goal being to remove as much as possible with doing the least amount of damage to Mac. We had to discuss risks of surgery and they weren’t fun to hear. There is about a 50% chance of some kind of permanent damage. This could include a lot of things from motor skills, swallowing, memory loss etc. Temporary damage is more common and we won’t know these things until he is in recovery. After surgery he will go to the intensive care unit to wake up which can take up to 12 hours.

We have to take this one step at a time. So for now, we need to get to Wednesday and get through surgery. Ideally, the next step will be another surgery to go after the smaller tumor and place a permanent drain. Once they take as much as they can of the larger tumor, they will do more testing on it. Parts of the tumor will get sent out to other renowned facilities and doctors to see if they can recognize it.

So for the foreseeable future we will be here with Mac taking care of him. Thank you so much for the donations that will help us to do that. Please help us spread the word with the go fund me page and this website (where people can also donate). We really appreciate it. I’ve cried too much and I’m too tired to write more so that’s all for now.

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