They Say It's Your Birthday!

I will start off with the most important news of the day, our beautiful little girl turned 5 today. It is hard to believe that Carly is 5, I can still remember her first days at home like it was only a few years back. She is the strongest, most resilient and most angelic person that I know, and since the day she was born she can brighten anyone’s day with just a smile. She has been given more challenges in five years than most would see in 20 lifetimes, but she bounces back time and time again. I love her more than words could ever say.

The tough ride has continued since my last post. Carly hasn’t gotten back to feeling like herself since her last shunt surgery on 12/22. We did have the good fortune of getting to spend Christmas Eve with Christa’s family and we made it to Michigan on Christmas day to spend time with my family. It was great seeing both of our families and we were very thankful for the time spent with them. The trip to Michigan wasn’t easy for Carly though, and we had to leave early to get back to the hospital at UCSF.

We spent 12 hours in the emergency room on New Year’s Eve day, and it turned out Carly was battling a urinary tract infection. We were admitted to the hospital about 30 minutes before midnight and we ushered in the new year with some champagne and tunes from past New Year’s Eve shows. After three days in the hospital Carly was feeling much better and we headed home. Since then Carly had continued to have trouble getting back to 100% and today we had another scare that sent us back to the emergency room. We found that Carly has pneumonia, and the stress of the infection cased an adrenal crisis that left her feeling terrible. She bounced back amazingly well during our day in the emergency room and thankfully she was able to spend the end of her birthday back at home.

She is one amazing little lady, and she sends her love to all of team Carly.

Love, Brad

Catching Up For The Holidays

It has been a long time since my last post, and a lot has happened during this time. I don't know exactly why I haven't written sooner. Partly I think that the frequent issues that Carly has had to deal with have been wearing me down some, and I was starting to feel like a broken record with my posts. That said, this blog is an important way to keep all of our loved ones up to date, and to keep Carly in the minds of so many. We also get a lot from the comments from all of you here and we have missed that. We are going to try a new phase of the blog and I will try to write more and post more photos, but also Christa will begin writing more often with updates on how Carly's weeks are going.

Now on to what people really want to know: How is Carly? I have described the last four months as hovering around mediocre, with some periods that were better and quite a few when it was worse. During the good periods Carly has been able to go to school, she is awake and interactive for most of her time there, and many of her classmates love to get to push her in her wheelchair during their outside time. She is full of smiles, eats well and as always she loves listening to music. We took Carly and Kempton on a 10 day trip to Kauai in October and she had her own bedroom with a big poster bed that had windows looking out to the ocean and beautiful gardens. Each day at sunrise birds would be singing outside her window and she would wake up smiling. That alone was worth the trip. The less good periods have been too frequent and typically Carly stops eating and drinking and she sleeps 20+ hours a day. Each time a shunt issue has been to blame.

Carly is now up to shunt 37, which she got earlier today. She had surgery for shunt 36 just last Friday and after a good day on Saturday she slowly got worse again over the week. Today Dr. Auguste found that something had been blocking the flow that likely got stuck there during the last surgery. She is resting well now and we were treated to a beautiful view of the Marin headlands when we got up to her hospital room today. It was one of the first sunny breaks in a long string of rain, and I am hoping that it is a sign that Carly has some sunny days ahead.

We should get home from the hospital tomorrow and we will get to spend Christmas Eve with Christa's family in Walnut Creek. If Carly is recovering well we hope to fly to Northern Michigan on Christmas day to spend some time with my family. We'll be keeping our fingers crossed that both of these things get to happen. I hope you all have a very Merry Christmas and a Happy New Year.

Love, Brad

Thirty Three

It has been a very long time since my last post, which this time has been a good sign for Carly.  Her most recent shunt lasted 10 weeks, which is a new record for Carly.  During these ten weeks she has done a lot of fun things, including going to her fourth High Sierra Music Festival and a recent trip to visit family and relax at Douglas Lake in Michigan.  The days were not all good for Carly, with some times when we thought a shunt surgery was just around the corner, but she would then pull out of that and follow it up with a few better days.  Consistently so-so is how I had been describing it, but that is a step in the right direction.

Over the last week the less good days were on the rise and we were certain that she would soon need to have a shunt surgery.  That day was today, and she headed into the OR around noon to get shunt # 33.  Dr. Gupta noted that it was clogged, but did not seem as extreme as past revisions.  Her protein levels have dropped a slowly and are now down to 207.  Dr. Gupta wants to see that get into the 100's, and at that point the expectation is that her shunt would be much less likely to clog.  She has her new shunt in place now and she is resting comfortably next to me in her hospital room.  We are hoping that this shunt will set yet another new record, and I will not wait for it to fail to make my next post.

Love, Brad

Pennies For Carly

Carly has been doing pretty well since her last surgery. It continues to take awhile for her to get back to her baseline after surgery, with a lot of trial and error to figure out how much we should be pumping her shunt. While this does make for a mix of good and less good parts of the day, the good parts are still more common. She recently got a new chair that supports her really well and makes it easy for us to take her around the house and involve her in our daily activities. This should be a great addition for us and will hopefully help encourage Carly to spend more and more time awake and interactive.

Recently we received one of the most touching and caring packages in the mail. A friend of ours, Julia, who is a teacher at Donald Hertz School P.S. 83 in the Bronx, NY spread the word about Carly and her fight against brain tumors. A teacher at the school, Connie Calabrese, and her community service club decided to choose Team Carly fundraising for the National Brain Tumor Society as their project. Through a program called Penny Harvest, this group raised $400 to help support the fight against brain tumors. The package they sent included letters and poems from the kids filled with love and support for Carly, as well as a picture of all of them holding a Team Carly sign they made. It was incredibly touching, and such a great example of how inspiring Carly is and how thoughtful and caring people can be. Carly, Christa and I want to thank Julia, Connie, Jesada, Giselle, Maria, Shylia, Vivian, Joshua, Ariella, Bibi, Chris, Jorge, Daniel, Elisaul and Bernadette and all who supported them from the bottom of our hearts. You helped brighten Carly's day, filled her with smiles and will help her to keep getting better each day.

Love, Brad

Thirty Two

Carly was having a lot of up and down moments, with the down moments getting more prevalent over the last week. Time for shunt 31 was clearly up, so Carly headed back to the OR yesterday afternoon.  Dr. Gupta found an obstruction in the peritoneal catheter this time, and he replaced all of the shunt hardware. The elevated protein levels that lead to build up in the shunt have been stable over the last month but still need to come down a bit to ensure the shunt will not become obstructed.  Carly recovered well and we had a nice, quiet room at the hospital last night.  She was discharged around noon today and is now fast asleep in her own bed here at home.  We are hoping that with all new shunt hardware, she has a long stretch of feeling good coming her way.

Love, Brad

A Good Cause

Wow, where did May go? Before I go into the Carly update I first wanted to thank everyone again for their support of the Bay Area Brain Tumor Walk. Team Carly raised $11,045 this year adding to the incredible efforts over the last four years. It was great seeing everyone out in Golden Gate Park, and we felt the support of all of you who couldn’t be there in person. The money that this event raises really is making a difference in research for a cure for brain tumors. A few weeks after the walk I had lunch with one of the directors from the National Brain Tumor Society and she told me a story of a recent drug trial at a biotech company in San Diego that was funded in part by NBTS. In this trial, which is still ongoing, they are finding success in treating a type of brain tumor (GBM) using oncolytic virus therapy. This concept uses live viruses to selectively infect and replicate in cancer cells, with minimal destruction to surrounding tissue. While the concept of using live viruses to infect and destroy tumors dates back to nearly over a century, advances in molecular biology and virology have accelerated development recently. Knowing that our fundraising is going directly to this type of work is very rewarding and shows how Carly (through all of you) is making a difference in brain tumor research!

The last few weeks have been very up and down for Carly. It took several days after the last surgery before she started to feel like herself, which isn’t too unusual these days. She then had several days where she was doing really well with some really productive therapy sessions. After a few of these good days she started to go downhill a bit and she still has not gotten back to feeling her best. By last Sunday her seizures had really increased and she had close to 20 that day which left us wondering if a shunt surgery was around the corner. Since Sunday her seizures have gone down a lot, and she has only had one today. We have been pumping the reservoir on her shunt more to force flow which may be making the difference, but it is a tricky balancing act between pumping too much and too little. Needless to say it is frustrating that she has to go through this, but it has been good to see her feeling a bit better over the course of this week. We’ll be keeping a close eye on her, as always, over the next few days to try to figure out what changes we should be making. Thanks for keeping her in your thoughts and prayers.

Love, Brad

Thirty One

It was a busy week and I didn't get a chance to post a picture from the walk and thank everyone for their support. It was a beautiful day and very inspirational to see so many people out for this important cause. I'll post more on that soon.

Carly has been showing signs of shunt failure for awhile now but we were able to put off surgery for almost a week. She was doing pretty well and had a particularly good therapy session on Wednesday but that took a quick turn last night, when she woke up around 2am in a lot of pain. She was hard to settle down for the next four hours and it was clear that the shunt was to blame. We called neurosurgery and surgery was scheduled for 2pm. Dr. Gupta found a clog in the ventricular catheter which he replaced. Carly has had a smooth recovery so far and she got a nice room overlooking the Marin headlands and Golden Gate Bridge which is a nice change from our last few visits. She is resting next to me now as we listen to some music on her travel speakers, and I expect she will be discharged and sent home tomorrow morning.

Love, Brad

Grateful For The Support

First, I want to thank everyone that has supported the Team Carly brain tumor walk team. We have raised close to $7,000 this year and over $30,000 over the last few years between east coast and west coast walking teams. That is truly inspirational. If you are planning to join the team as a walker and haven’t gotten to it yet, today is the last day for online walk registrations. You can still register at the walk itself, and donations to Team Carly can be made online up to the walk day next weekend (and even a few days after.)

Carly had a tough few days last week. She woke up uncomfortable several mornings, and on Thursday afternoon she was so uncomfortable that she couldn’t stop crying for several hours. After a sleepless night when she continued to be uncomfortable and inconsolable, we packed our hospital suitcase and headed up for what we thought would be several days in the hospital. Hoping to avoid that if at all possible we got in touch with Caroline, the nurse practitioner for neurosurgery, to see if we could investigate in the clinic rather than the ER. As she has many times before, Caroline came to the rescue again and helped right away with a shunt tap to eliminate a shunt infection as the problem. These initial results looked good, so the next thing we needed to investigate was a lung infection. Dr. Uba, Carly’s pediatrician was quick to order a chest x-ray and after only an hour of waiting at home he phoned to let us know that she had pneumonia and that she should start a course of antibiotics. She is doing significantly better now, although still tired. I am just amazed at her improvement and that we were able to avoid another admission to the hospital. We are very thankful for Caroline, Dr. Uba, our close proximity to UCSF and as always Team Carly!

Love, Brad