Continuing good news!

Good news from today's neuro-oncology check up. Dad had an MRI a few hours ago and just got out from meeting with new Dr. N-O. She said all looks well. Woo hoo! We love that kind of check-up. Another interesting note is that he's going to try to switch his anti-seizure meds from Keppra back to Dilatin, which is what he took for YEARS following his initial tumor diagnosis and surgery. He never had serious side effects from it, seemed to tolerate it very well and it was inexpensive. He's been on Keppra ever since he started seizing again at the end of 2004. (Not sure why they choose Keppra over Dilatin back them, but we didn't question it at the time....not until now that dad has fallen into the Medicare prescription "donut hole" and all his medications are now REALLY expensive!) The downsides of Keppra have been that it makes him very groggy, it's expensive and we also feel that it contributes to his overall "slowed-down" state. We are hopeful that changing him back to Dilatin will control seizures, be more cost-effective and help him navigate further out of the fog. Keep your fingers crossed.

In other news, mom and dad are very well settled into their new home and it looks stunning. Mom has really made it into their little haven. New pictures coming soon.

Grandpa's Girl

Happy Grandpa. Celebrating Ava's 2nd birthday last month. Adorable!

Thank you Selso for the WONDERFUL pictures. Ava loves you. :)

Drs. and Medicare...Ugh...

A challenge we've had to overcome lately is trying to find a neuro-oncologist to follow dad's case here in Dallas. It's imperative that he sees this particular kind of specialist...not just an oncologist, or neurologist, or neurosurgeon. The neuro-oncologist has the insight, training and perspective to best follow a brain tumor patient. Since dad was able to go on disability a few years ago (he can't work any longer due to his deficits), he is now also on Medicare. Alas, finding this certain type of specialist dad needs that also takes Medicare was tricky. I find the whole situation completely ironic. Many brain tumor patients eventually seek disability and hence become Medicare users. Why would it be that the specialist that needs to follow these patients would not also take Medicare, which many of them would be on?

We met with a neurosurgeon this week (which was a total waste of time) as per referral from dad's new internist. Since we couldn't find a neuro-oncologist here in Dallas that would take dad (because of the Medicare), we were referred to this surgeon and told he could follow his case. Of course, my instinct was correct and no he is not the appropriate person to follow him. All of this, of course, after going to the appointment, sending all the records, sitting through 2 nurses asking the same questions before we finally go the low down from the surgeon. Like I said, total waste of time. The good thing that came out of it was a referral to another neuro-oncologist, whom w previously were unaware of, that as it turns out will take dad's case. Whew. Disaster thwarted.

He's a month past his scheduled MRI. He's supposed to get them every three months to make sure everything is stable. I'm slightly bothered that he's fallen behind schedule. We made an appointment with the new Dr. N-O and tried to get them to schedule the MRI before the appointment, but they wouldn't go for it. So this means THREE appointments - one to meet and great and do all the paperwork, etc., one to go for the MRI, and one to meet with Dr. N-O again to review the results.

The good news is that dad is off to a great start with his twice-weekly physical therapy. And he's still regularly attending Tai Chi. His Keppra levels are now where they should be and he definately seems less medicated and a little bit more alert.

Here's a video we took awhile ago of the nightly firefly show in mom and dad's backyard. Enjoy!

Doing great!

Good news. Seems that the decrease in medication IS having a positive affect on dad. He's definitely more responsive, aware and, dare I say, energetic. He's still got a long way to go before he'll be truly energetic by anyone else's standards, but for us he seems to be a little bit more peppy than before. He started physical therapy this week and according to mom they are a little more hard core at this facility. He said he was actually sore from the work! He's spending a lot of time working on projects around the house and seems to be a little more dialed in to his responsibilities. All good news. It's almost been a year since the recurrence fiasco. Hard to believe it's been that long, but so happy it's even farther behind us.