Today was our weekly meeting with the radiation oncologist and we also happened to have an appointment with the neurologist. We haven't seen the neurologist since right after we got the pathology report but had yet to go back to Duke to figure out our treatment plans.
Everything went really well today. The neurologist let us pass on doing blood work and instead gave us an order to give to the medical oncologist we will see next Tuesday. They are going to draw blood anyways to check red/white blood cells, platelets and hemoglobin, so we'll just let them draw to test his keppra levels, liver & kidney enzymes and then send the results back to the neurologist. Rion was so disappointed to not get stuck today after I had told him he probably would LOL He actually mentioned today that he's getting so desensitized to getting needle sticks/blood drawn that maybe he'll even give blood when this is all said and done. That he would even say that is a testament to how much work God is doing in our lives these days. I can't remember the people we were before 11/21/11 but some times I don't want to!
Same good news for the appointment with the radiation oncologist. Rion has gained a very slight amount of weight which is perfectly ok and very rare for people going through chemo & radiation. We firmly believe it's because he stays so active (if at all possible) and eats really, really healthy 90% of the time. So far he has no side effects from the radiation; his incision itches sometimes but that could very well be from the normal healing of the incision and not irritation from radiation. Today was his 11th treatment- we are 1/3 of the way done and next Monday will mark half way WOOHOO!! I still have my pessimistic feelings that something bad is still to come but maybe God is going to use this opportunity to prove me wrong and show me why I should have more faith...hey, I don't mind being wrong & humbled if it means Rion gets through this whole 42 day regiment feeling good!
The other good news I wanted to share is in regards to one of the financial aid programs we applied for. We were contacted by the non-profit organization last week who actually got us in touch with Merck, the drug manufacturing company. Merck has agreed to pay for 100% of Rion's chemo cost for this 42 day regiment (including the $480 balance we have for his initial prescription fill!!!) They are sending us the paperwork to complete to get the next 12 months of chemo covered also and seem optimistic that it will work out. That totally made my day today to come home and find Rion beaming with the news that he handled getting all of this orchestrated for us. God is good!
That is all I have for right now- life is moving along as normal as it can right now. I am still working full time except for on Tuesdays when I take Rion to treatment/doctors appointments. The other week days he has been able to find enough family & friends to volunteer that we haven't had to get in touch with any church groups or volunteer organizations to ask for transportation assistance. We both continue to marvel at how truly blessed we are and how lucky we are!
God bless!
Emily & Rion
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