Duke appointment 8/29/12

First of all THANK YOU to everyone for the prayers and well wishes today. We have truly felt your presence and it has given us strength to get through these past 2 days.

The appointment today was very good, better than we could have imagined. Yes, Rion is definitely having the partial sensory seizures again but it's not due to any of the causes we had speculated about. No swelling, no scar tissue, no tumor- the MRI was "stable" with no sign of change!! So...what is causing the seizures?? STRESS! Crazy, huh? But yeah, once you have a seizure you are per-disposed to having them again- they can be brought on by things as simple as lack of sleep, dehydration (which we are thinking played a part in Rion's most recent bout) as well as stress. Things have been pretty up & down these past few weeks and while Rion is a very laid back guy, his brain apparently didn't get the memo. But we thank God it wasn't any of the physical conditions that we has suspected. We are going to start searching for a psychologist that Rion can meet with to teach him some stress management skills as well as give him a non-biased sounding board to work through any stresses he wants help with. Along with therapy, it will be up to us (all of us) to make sure that we don't put too many expectations on him since feeling like he isn't "good enough" or "doing enough" seems to be a recurring theme. Rion is not the same person he was 9 months ago- he is not lazier or doesn't care as much, but doing even simple things takes so much out of him now because of the extra concentration and focus it takes. He just isn't able to take on as much as he could before and its hard to pick and choose when he wants to still go at the same (warped) speed as he always had.

The 2nd part of today's appointment was focused on how we are going to manage the new seizures. The increase in his Keppra to 3000 mg/day is working but the side effects are unacceptable. The fatigue & mental fog are not lifting as well as a general "off" feeling and an even harder time organizing and discussing his thoughts. So starting tomorrow we will begin gradually increasing his Vimpat, the adjunct seizure medication that was added in June and had successfully stopped all seizure activity until these break through seizures last week. Once that medication has been increased to 400 mg/day (is currently 200mg) then we will start weaning him back down on the Keppra to the 2000 mg/day he was on up until this past Saturday. The neuro-oncologist on call did not make a mistake by increasing his Keppra, Keppra is an amazing drug that has relatively few side effects and virtually no known drug interactions. The Vimpat on the other hand is a newer drug that isn't as well tolerated. But in our situation we feel that increasing the Vimpat is in Rion's best interest along with lowering the Keppra. It will take about 2 months total to make these changes to his medication which puts us right at our next appointment in October 31st where we will discuss with the doctor again how Rion is doing and make any additional changes as needed.

The last bit of (good) news- Rion should be all DONE with chemo in 2 months!! The oncologist said again today that he is doing as good as we could expect and there is no reason to continue on with treatment after he gets this 6 months under his belt. There is a chance that we might have to lower the dosage of the final two rounds because his platelets were down today lower than ever (52,000 & the previous record low was 60,000.) If they go below 20,000 Rion will possibly need a platelet infusion and will not be allowed to continue on the current chemo dosage. Additionally we need to watch his white blood cells and if they get below 1,000 (current low is 1700) then he will have to get a shot to boost his white blood cell production. Because of the compromised immune system (did not get the exact white blood cell # today but it's down from 2000 where it was last week) he is at a risk of a flair up of his shingles again so for now he will stay on the Acyclovir- the antiviral medication that he has been taking since the shingles started. We will also decide at our next appointment when he can stop taking that but it isn't harming anything and the complications from another shingles outbreak could be really bad.

So that's where we are now. To say we are relieved would be an understatement, Rion smiled today for the first time in a week and I am reminded again how wonderful and kind our God is if we remain faithful to him.

Emily