Friday, November 27, 2009

'Twas The Day After Thanksgiving

I was looking back at last year's Thanksgiving post and was amazed how much has happened since then. At that time Carly was only six weeks out of her first tumor resection surgery, she had a giant collection of fluid on the top of her head and she had residual tumor that was growing back quickly. Countless nights at the hospital and many surgeries later, Carly continues to be quite the fighter.

The best recent news is that Carly remains tumor free. She had a routine MRI check-up a few weeks ago which confirmed that the tumor has not grown back. This was music to our ears. Carly has not had much progress on the seizure front though. We have tapered up to the maximum dose on the second medication and she continues to have many seizures each day. At one point they dropped as low as two seizures a day, but they have increased again to as many as eight in a day. She has also been very tired since her seizures began on September 26th, sleeping for nearly twenty hours a day and only smiling a few times since then. She clearly is not feeling great and we need to get to the bottom of this problem as soon as possible. She will most likely begin a third medication in the next few days, and we all hope that this is the one for her.

Several things have not changed since last Thanksgiving. We continue to be thankful for all of our friends and family that have offered their love and support. You have all helped us in so many different ways, we can't imagine going through this without you. I am thankful everyday for Christa who is not only an amazing wife but also the most incredible mom a little girl like Carly could ask for. And of course, we are thankful for Carly who continues to be an example of strength and perseverance and always brings out the best in everyone around her.



Wednesday, November 4, 2009

Shine A Light

Carly's last EEG confirmed that her seizure medication was not helping. She started her new medication on Thursday which will taper up over a month as her first medication is tapered down. It will still take some time before we can tell if the new medication is helping, but her seizures have gone from around seven a day to three/four a day since the change so things are looking promising.

The day the new medication began was also a big day as Christa, Carly and I hopped in the car and headed south to Indio, CA for Festival 8, the first ever Phish festival on the west coast. For those who aren't familiar with Phish, they are one of our favorite bands and the link that connected us with many of the great friends in our lives. We thought that three days in the sun with many loved ones and great music would be a good thing for all three of us and we were not disappointed.

Phish played a total of eights sets of music over the course of the weekend and Carly made it to all of them. Nothing fills the air with good energy like tens of thousands of happy people dancing the night away, and I really think that this could only help Carly with her healing. All of our friends dressed up for Halloween, many of us as antelopes in honor of the Phish song "Run Like and Antelope" and Carly was the cutest chicken I have ever seen in a costume that Christa made for her. As the band covered the Rolling Stones album Exile On Main Street during the second set on Halloween the lyrics for "Shine A Light" really struck a cord:
"May the good Lord shine a light on you,
Make every song you sing your favorite tune.
May the good Lord shine a light on you,
Warm like the evening sun."

Our days can still be a roller coaster ride but times like these surrounded by so many of our Team Carly family shows how many great moments there are in life, and how many great memories Carly has to come.

Love, Brad