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:

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

The last few weeks have not seen a lot of changes for Carly. Her seizures have decreased in intensity and frequency a few times as her seizure medication has been increased, but each time they have eventually returned. The medication reached the maximum dose last Friday and for a few days she only had 2-3 short seizures each day lasting around 30 seconds but they are back to 7 or so a day that last anywhere from 3 to 15 minutes. When the seizures first started we were told that it may take a few months of trial and error with a short list of medications to get them under control, and it looks like we aren't there just yet. Carly will have a few blood labs and another EEG on Tuesday to give some additional insight on how she is doing and the neurologist will either continue to increase her current medication or begin the taper up with a different one.

While Carly has been dealing with this issue, we had the opportunity to go to Hawaii for a part business (a work convention) and part pleasure getaway. We were a bit concerned since Carly's seizures were not under control, but the neurology team assured us that the seizures were not an imminent danger to her and they felt that Christa and I could care for her just as well in Hawaii as we do at home. It ended up being a great time away in the sun, and Carly had many moments when she was clearly enjoying herself. From her first bite of fresh pineapple to her first session of floating in the ocean (ok maybe she didn't love that, but in the end she did seem relaxed) she definitely liked island life. Christa and I got into the island life right away too and it was a great way for all of us to relax a bit as we try to help Carly get past this hurdle.

Love, Brad

Carly's week has been ok. Last week she was fussy for much of the day, but with several teeth coming through, a little constipation, and some seizures, who could blame her. Two out of those three have eased up for her, but she is continuing to have occasional seizures. She started taking her anti-seizure medication last Monday, and these medications are typically started at very low doses and then increased every four-six days until an effective dose is found. At this point Carly is still having 2-3 seizures a day and they can last anywhere from 2-10 minutes. It can often take several weeks to find the right dose, so we will continue until the seizures finally stop or we reach her dosage maximum. If the current medication does not stop her seizures, there are others to try. It is very important that we get these seizures under control as quickly as possible though, because if they go unchecked they can escalate to more critical seizures and her neuro-development will likely plateau as she continues to have them.

Carly is doing well otherwise, and she seems to be looking around more and more each day and loves to test out her new teeth by chewing on her stuffed carrot. It is clear that a lot is going on up in her head right now and we will continue to surround her with love to help get her to the next step in her recovery. You can help us by continuing to envision Carly as the perfect, healthy little girl that is her true self.

Love, Brad

Carly has been cruising on her slow and steady recovery, getting a little stronger each week through her many physical therapy sessions. Late last week, both Thursday and Friday, she had a few 20-30 second moments that looked a little unusual to us so we were keeping a close eye on her over the weekend. On Saturday and Sunday these unusual events culminated with what looked like a seizure that lasted almost 10 minutes while we waited at a tram (MUNI) stop in San Francisco. As soon as we got home Christa called the pediatric neurology department at UCSF, who recommended that we come up to the hospital as soon as we could for observation.

We arrived at our hospital room around nine yesterday evening and they immediately hooked Carly up for an overnight EEG study. An EEG requires 24 leads to be glued to your head using a loud vacuum hose to quickly dry the glue. The leads measure your brain activity and can indicate anything unusual such as a seizure. Needless to say, Carly was not happy getting the leads attached and she was pretty exhaused from yelling after the two hour process of setting up the EEG. After about fourteen hours of observation the neurology team determined that Carly was in fact having a type of seizure. The seizures are a bit unusual because Carly is interactive throughout the event, and she will even smile as it is happening. They have placed Carly on an anti-seizure medication and expect that it may take a few days for it to take full effect but we were able to head home this evening after our shortest trip to the hospital to date. Carly is doing well now and is ready for a good night's sleep in her own bed. This type of thing is not unusual for kids who go through everything that Carly has and it may simply be a passing issue as her brain rewires itself. She continues to be as strong as ever and will make it over this hurdle like every other that comes her way.

Love, Brad

It was one year ago today that our lives took a turn for the unexpected. Christa, Carly and I sat for what seemed like hours in the exam room waiting to hear the result from Carly’s head ultrasound. When the doctors walked into the room we didn’t know what to expect, but we could tell it wasn’t good. “Your daughter has a very large brain tumor.” It felt like all of the air was sucked out of the room, leaving us gasping for a breath. There was no way to know how to react and we didn’t have any idea what was in store for us.

It is putting it mildly to say that it was a tough year as Carly had to undergo fifteen trips to the operating room and a total of nearly four months in intensive care. She has proven to be a mighty little girl though, and no matter what has been thrown her way she has risen to the challenge. Her amazing spirit seems to radiate from her and she has a way of bringing the best out of anyone that she meets. I can't help but feel privileged to have been trusted with the care of such an incredible little girl.

The love, prayers and healing energy that all of you (who we now know as Team Carly) have continuously sent out to Carly, Christa and me has carried us through all of the tough times and it continues to help Carly on her healing path today. It has been inspiring to see and feel the power of hope and love, and I don't know how we would have made it this far without you. We are so grateful for your support. Carly may still have a long way to go to get back to 100%, but with her amazing spirit and the power of Team Carly she can't be stopped.

Love,

Brad

Carly continues to slowly and steadily improve. She has started to pull her legs up while lying on her back which she hasn’t done since her surgery in April. This new skill will help her strengthen her stomach and legs, and is one of the important first steps toward rolling over, sitting up and eventually crawling. She is also looking around more each day, and is usually pretty quick to smile with a tickle of her cheek or nose accompanied by silly sounds. (And what a cute smile it is!)

We flew to Michigan late last week to catch up with my family and spend some time relaxing at our cottage on Douglas lake. Carly met her three beautiful cousins (Kate, Tess, and Mary Claire) from Ann Arbor for the first time and also had her first visit with her great grandmother, Grammy. Grammy was quick to remind us that she will turn 97 in less than two months, and she can still describe in detail the scene when she met my grandfather over eighty years ago. Carly certainly has good genes on her side. It was amazing to see four generations of women from my family in the same room, and easy to see where Carly gets her resilient spirit.

Love, Brad

Carly has continued on her path of slow but steady progress over the last few weeks. Most importantly, she has steered clear of the hospital and all of her blood lab results continue to be normal. She has started to look at Christa and I when we talk to her which is something that she has rarely ever done before and on several occasions she has welcomed me home from work with a big smile. It really doesn't get any better than that.

Although things are going in the right direction, Carly is still keeping us on our toes. During a trip to Lake Tahoe last weekend Carly spiked a little fever which is a lot more critical for her than a typical kid. Because Carly doesn't have a pituitary gland she needs increased amounts of hyrdocortisone administered anytime her body is under stress, including a fever. These issues were a contributing factor to her last trip to the hospital so needless to say we were a bit nervous as we waited to see if the fever would resolve itself with hydrocortisone, Tylenol and a cold washcloth on her head. Fortunately she started feeling better and Christa and I were able to breathe a big sigh of relief. We will probably need to deal with events like this for years to come, but we take comfort knowing that Carly is always surrounded by the love from all of you, keeping her safe and guiding her on her road to recovery .

Love, Brad

I just realized that it has been over a week since my last Carly update. I can't believe an entire week has already gone by, but I am so happy that it has passed so easily. Carly has been doing really well and continues on her slow but steady path of recovery. Last Monday she had a head CT scan to see how her ventricles looked since her shunt was reconnected and things looked good. Her ventricles are smaller which means that the shunt continues to help alleviate the pressure in her head. There is still a lot of fluid between her brain and skull, but this will be there until her brain grows to fill the space that was once taken up by her tumor. She has been sleeping really well which has helped us to make up for lost time, something we will take as long as we can get it. She has also been smiling more and her awake periods are getting longer and more frequent. All in all, it was a good week.

Love, Brad