We're still here!

I can't believe it has been over a month since I posted last but then again I can because life has been so busy lately!

Rion got his MRI results FINALLY last week from the MRI he had January 4th. Apparently there was some confusion at the local oncologists office and they forgot to send it to Duke. I went with Rion to his local appointment January 15th and all they could say was "yup, looks like he had a brain tumor removed, can't tell if any of the areas lighting up are of any concern." Hmmmm. So we asked them to send the scan to Duke so they could compare it with his last one and after 2.5 weeks of phone calls and e-mails to follow up I finally just had Rion get a copy from the hospital and I mailed it myself. Going forward that is the route we will be taking when he has the MRIs done locally. Entirely too much work for something that should have been handled automatically! But the good news is the MRI is still categorized as stable so while it appears there are no more improvements to be seen from the chemo/radiation, there are also no new areas of concern.

So even though we just got the results last week we are still going to Duke next week for Rion's next MRI & oncologist appointment. We have a good deal we'd like to discuss with them while we are there besides the obvious (how does the new MRI look?!?) First off, there is a screw head that we can feel through Rion's skin and it's quite painful to the touch. We believe it might be driven through a nerve or causing some sort of nerve disruption. If we accidentally touch that spot it will literally bring tears to his eyes. We're hoping they will have a solution, even if it means removing the screw or moving it.

We would also like to bring up the possibility of have Rion tested for adult ADHD- you can read more about adult ADHD here. It's impossible to tell what side effects are tumor related and what were caused by the chemo/radiation but the bottom line is that we do not see things improving past where they are now. I don't know if they would even consider a diagnosis of ADHD given what he has been through but we figure it doesn't hurt to ask. Especially if it could be treated. It is very frustrating for Rion to be so forgetful and absentminded when that is not how he was before all of this started. He expressed last week that working on projects takes him double the time that it used to, he has a hard time staying focused on what he's doing and going about the project in the most efficient manner. I have never seem him so discouraged. We knew realistically it would be unlikely that Rion would be the same person today that he was prior to brain surgery, radiation & chemo but it's still very hard to deal with.

To be honest it's very hard for me to deal with as well. If you know me, you know that I am a VERY type- A person. I thrive on organization & efficiency (if I didn't I have no clue how we would have survived all the juggling we had to do this past year) and it drives me nuts when things are unorganized or chaotic. There have been more times than I want to admit that I have lost my cool & yelled at Rion for not doing something quick enough or other wise to my liking. I can't begin to express how much I regret this. I feel like the worst person in the world when this happens. I should be thankful every day I have with him, not griping about how cluttered the basement is or how long it is taking him to refinish a piece of furniture for our nursery. I want to see if there is any way we can help Rion with these problems as much for myself as I do for him- which is horrible! But if we're being honest here it's the truth. I love Rion will all of my heart and I will stand by him the rest of my life but some times things are much more difficult than I ever imagined they would be.
Ok enough about that!

I can't really think of anything else we are going to bring up at Duke except to confirm we are still on the schedule of having MRIs done in Georgia every 2 months and at Duke every 2 months. It will be nice if we only have to make 4 trips up there this year (compared to the SEVEN we made last year.) Especially since our little one will be here before too long!

I promise to try & be better about posting our MRI results in a more timely manner as well as addressing any issues/concerns that come up. We are just trying to live our lives as normally as possible these days which is some times easier said than done. Rion still has partial seizures and they seem to get worse when he is tired and/or stressed. The past few weeks we have seen an increase in frequency again which we can only attribute to the anxiety he feels about the upcoming trip. We continue to be grateful for all of our family & friends that have been there for us over the past year and hope that one day we can pay it forward and help someone else in need as we have been helped.

God Bless,
Emily