Nashville or Bust

The Day After

Good morning. It’s so nice to say FEEL those words.

Yesterday was a big day and it started early. So much so that I wasn’t able to keep the countdown going. But that’s okay, right? We all knew what Friday, April 8 was about.

I’ll start with Brandon because his appointment was the first on deck. Six months ago we were referred to a genetic/cardiac team at Children’s for Marfan Syndrome screening. This was just a few weeks after Dave’s diagnosis and things were pretty crazy. During that evaluation, the cardiologist said Brandon’s aorta was dilated per the echocardiogram. It was mild, but it was there and thus he was put on a beta blocker and began the blood screenings for Marfan, etc. We found out in Jan/Feb that the screen came back negative. Given all of the other “clues” acquired, they decided to look at a few more genes to see if Brandon had Loeys-Deitz Syndrome, another connective tissue that shares some properties of Marfan — including aortic complications to a dire degree — but isn’t Marfan. Those test came back marginal — one of the two genes they looked at was normal. The other had something a little “wrong with it” but not definitive of triggering a disorder such as LDS. It was explained that it could just be a genetic variation. To be safe, they wanted Dave and I to start genetic testing (ECHO + blood work) to make sure we didn’t have anything similar and rule in/out if our family was weird. Um, we know the question to that. This was in Feb/March when Dave was wrapping up chemo and getting ready for radiation. We told them we’d “get on it” knowing that Brandon had his check-up early April.

To prepare for the now customary six-month visit with the genetic/cardiology team (white coats!) Brandon had a CT with contrast two weeks ago. And this is where it gets odd. Our pediatrician got a copy of the report and called us right away. Per the radiologist, there was no aortic dissection (good, meaning things didn’t get worse) nor was there any aortic dilation. In fact, the whole aortic root and system looked pretty darn “normal.” Okay… How did this happen?

We decided to just wait for April 8 and chat with the cardiologist in person. Probably better that way because we were able to filter out some emotion. Brandon’s appointments were to start at 7:30 so we went to bed geared up for a big day. A few hours later, Brandon woke up with an awful intestinal bug. There was no way he was going to make this appointment. So I did what any other mom would do. I went to the appointment for him.

The receptionist at the Heart Institute at Children’s thought I was strange. She’s good. And at first, I was told the physician would just like us to “reschedule.” I simply said, “I know that he isn’t busy right now and I’d really like to be able to talk with him about these tests results. He has all the information — he technically doesn’t need to look at Brandon.”

PAUSE

“Okay. The doctor will meet with you.”

It was a good meeting and I could have been real brisk — for the love of all that’s green and good he made Brandon go through the emotional bends these past six months — but I wasn’t. I was open, let him know I had a copy of the report and that I looked up every big word on it. How does a dilated aorta just not be dilated anymore? The simple answer — the CT gave him a better picture. It showed no weak spots along the aortic root at all. The beta blockers could have helped — so Brandon will continue with those but yeah, in his terms, “this is really great news.” I followed by saying “Yeah, I’m glad Brandon didn’t have a sports scholarship offered to him that we turned down. That would have really stunk.” (I’m allowed one snark point per medical mystery. Rule.)

So where are we in all this? Well, Children’s wants to keep Brandon on an every six month check-in schedule. There could be something with his connective tissue system that they just don’t have a name for yet but they’d like to monitor. And, we can regroup with the surgical team to coordinate the pectus bar removal. We’d like to do that in December while we’re still in our deductible bubble and Brandon can stay home for a bit to mend. The best part –B can play soccer again, and that was really all he wanted to know. EKU has a club team (he’s actually researching them right now on the other computer.) In terms of genetic disorders and saving Jameson and Tessa from investigative medicine, Dave and I will get around to the blood tests (now that we’ve hit our family deductible, hee hee) but probably won’t do an ECHO. Why they didn’t order a CT after the ECHO / initial diagnosis is beyond me. It would have clarified so many things, right? Everybody wants better pictures.

Speaking of pictures, here’s one for you:

Upon completion of radiation yesterday afternoon, Dave was given his mask contraption and a certificate from the team. He absolutely loved the pomp and circumstance as this was a huge accomplishment. The paper reads:

“Be it known that Dave Killen having completed the prescribed course of radiation therapy with a high order of proficiency in the Art and Sciences of maintaining a cheerful composure while demonstrating high courage, tolerance and determination, is recognized as having earned the respect and admiration of the Radiation Therapy Staff and is hereby awarded the Certificate of Merit (First Class) with all the rights and privileges pertaining thereto given this day, April 8, 2011.”

Dave will have some follow-up appointments and scans within the next 4-6 weeks. At that point, our hope is we get the nod and he is officially rated ‘R’ for you know what. Not gonna say it until I can scream it from the mountaintops!

Thanks for journeying with us friends. We’re now returning to our original, albeit scant, programming and ramblings of the road trips of our happy and our complete. We’ll be running laps in June in the Relay of Life. We’ll be driving back and forth to Richmond, KY a bit. We’ll be back at Woods Creek Lake in July. And of course, we’ll be shuffling down old Broadway in October (if not sooner!) All of this minus that which tried to define us in other ways.

Love you all ~ Jacqui

April 9, 2011 - Posted by daveandjacqui | Brandon, Dave, Everyday