Update & Pathology results

** EDIT after reading the pathology report we have an exact diagnosis: anaplastic oligoastrocytoma (grade 3.)

First off, I apologize for taking so long to update. The last few days have been a whirlwind of coming home (yay,) getting the pathology reports and having to call close family and friends to explain what our next step is.

Good news first, Rion is doing GREAT! After he was discharged last Saturday we moved into a hotel suite with his mother as our temporary home until he was recovered enough to make the 6 hour car ride home. Saturday & Sunday were mainly about pain management, tapering off the steroids and sleeping. For the most part, things went smoothly until Sunday night when Rion had some breakthrough pain during the middle of the night. One frantic 2AM call to the hospital and permission to give him more pain medication than prescribed and we were able to get the pain under control and did not have any more episodes like that. Monday afternoon Rion really started to come back around- he wasn't sleepy and was content to watch TV and take our daily strolls around the hotel to rebuild his strength. By Tuesday morning he was ready to go! He got up and showered, put on regular clothes, ate a hardy breakfast in the hotel lobby & even ran to the store with me to pick up a few items. After all of that and no pain/fatigue, I called our surgeons office to see when we could leave to come home. We must have answered her 20 questions correctly because she said we were free to go whenever. After hanging up I turned to Rion to give him the good news & ask him when he wanted to leave and his immediate response was "NOW!" So that's what we did. I hesitated to put anything on FaceBook/Blog just in case we started the trip home and had to turn back around or stop but everything went great; Rion slept a little in the beginning and we stopped at least once an hour so he could get out and stretch his legs. He made the whole trip home with no pain meds and no complaints (except that we weren't already there!)

His incision is healing great- no drainage or signs of infection. We've been diligent about cleaning it with water/peroxide as directed and keeping antibiotic ointment on it. The swelling has gone down tremendously and it's not near as sensitive as it was at first. We have an appointment next Monday morning to get the stitches out at our neurologists office here in Athens and I don't foresee any problems coming up that would prevent that from happening. I am going to post a picture at the end of the post but like before I will make it to where you have to click through to see the photo in case that isn't your thing!

Now for the not so good news, about an hour from home I received the call from Duke that the pathology report had come back. All along we've believed the diagnosis would be a low grade glioma- meaning that the tumor (Morton) was the only abnormality and by removing it, we would be in the clear and not have to go through any additional treatments. Follow up scans would be scheduled every 6 months or so but for the most part it would be over and done with. Well, that's not the news we got. Rion has what's called a high grade glioma. Like other cancers in the body, brain tumors are graded on a 1 to 4 scale- 1 & 2 are low grade/benign (1 normally only occurs in infants) and 3 & 4 are high grade/malignant meaning that besides the primary tumor there are additional abnormal cells that must be treated in order to prevent recurrence and multiplication. Rion's tumor was a 3.

Our next step is to travel back to Duke next week for a 2 day "boot camp" that will describe in more detail exactly what our treatment will entail: quantity, duration, etc. We do know that it will involve a combination of chemotherapy and radiation. Between now and then we must find an oncologist here in Georgia because while Duke will create the treatment plan and monitor it, we will actually receive treatment locally until it's time for our next follow-up with Duke.

I hope you can understand now why we're been so long updating everyone. This was not the diagnosis we expected at all and we are still reeling from the shock. There have been a lot of tears cried these last few days as we were forced to admit that Rion doesn't just have a brain tumor, he has cancer. Never in my life did I expect at 27 for my just-turned-30 year old husband to have cancer! I am still not sure that I have fully accepted what this means, all I know is that we must keep pushing on and fighting. I may be scared and angry, but I am also stubborn and dedicated to seeing this through to the end. The pathology report did put a new spin on things, but I'm praying that God will continue to keep his hand over us and help us cope with whatever comes next.

Thank you again for all of the prayers & kind words. I want to especially thank the anonymous donor who paid our hotel room from last Wednesday through this Tuesday in full- whoever you are you have no clue what it does to my soul to know that there are still such good people in this world when all we seem to hear about are the negative. You have renewed my faith in people and I will be looking for an opportunity to pass on a blessing to someone else.

We will make sure to keep everyone posted as to what Rion will be going through over the next few weeks/months. Please keep praying for us and for our treatment team.

Emily Henderson