East Side

Wow.  I have always known that Team Carly was an amazing group, and this weekend was more proof. On Saturday Team Carly East gathered for the New York City brain tumor walk.  Eighteen orange wristband clad friends made their way around Governers Island and we could feel the love coming from them all day long.  Team Carly East raised $3,170 for brain tumor research bringing the Team Carly total to $17,151! Thank you all so much, words really can't express how much we appreciate the support.

Carly has been feeling pretty good since her shunt surgery.  She has had some long periods of being awake and has been using her hands a lot, sticking them in her mouth more than I have seen in a long time. Over the weekend Christa spent a few nights away with friends and I got to spend my first solo nights with Carly. We had a great time together, and I couldn't think of a better way to celebrate father's day than with my sweet little angel.

Love,  Brad

Out Again

Carly's recovery from surgery is going well and she is feeling much better than yesterday. She was already back to smiling this morning and she was discharged from the hospital in the afternoon. I think she has set the record for quickest discharge from UCSF after a shunt surgery many times now, and it is a testament to how strong she really is. Let's go seventeen!

Love, Brad

Seventeen

Carly's surgery went well and she is now resting peacefully in a room on the pediatric floor. The procedure took about three hours, with the first hour being the placement of a central veinous port that we opted for Carly to get in order to make IV access easier in the future. This has always been a struggle with her, so hopefully it will help. After the port placement Dr. Gupta replaced the shunt valve and distal catheter, which were both clogged. He used the high protein valve this time around and we are hoping that number seventeen is planning on sticking around for a long time. Thanks for keeping Carly in your thoughts and prayers.

Love, Brad

One Of These Days

We knew Carly's shunt was on borrowed time, and she has let us know that it is time for a change.  She will have surgery tomorrow around 2pm to bring on shunt number seventeen. It is frustrating that her shunts aren't lasting more than a few weeks, but the extremely high protein in her CSF continues to cause problems.  Dr. Gupta plans to use a new type of shunt valve that is designed for high protein cases, and we're hoping that it will give Carly some more time between surgeries.

Love, Brad

Naptime

Carly bounced back quickly and after a day in the PICU we were sent home yesterday afternoon.  We all were obviously tired because we fell asleep in our living room less than an hour after getting home, and we managed to eat some dinner before heading off to bed.  Carly had a good day today and is eating well and sharing some cute smiles with us. We'll be keeping a close eye on her over the weekend, and the neurosurgery team is ready for a shunt replacement whenever Carly tells us it's time.

Love, Brad

Good Morning

Carly continued to be really sleepy until around 3am today, when she started to take a quick turn for the better. Since then she has continued to improve, smiling a lot and entertaining her nurse with some giggles.  She is eating now and looking more like herself and is only getting a little supplemental oxygen.  Over the next few hours we will ween her off of the oxygen, and if she tolerates that well she will be sent home.

Love, Brad

Well, Almost Finished

Carly hasn't woken up from her anesthesia as quickly as usual so we will need to spend the night in the PICU for observation. They have said that any effects from the Gamma Knife wouldn't be noticeable this early, so it is likely related to being under anesthesia for longer than usual, or related to the shunt function in some way. We'll be ready and waiting with a bottle of apple juice as soon as she is ready to drink.

Love, Brad

Finished

The procedure is over and Carly is resting peacefully in recovery. Everything went smoothly, and as long as she rouses well we will be heading home later tonight. The effects of radiation treatment often take months to become clear so it will be awhile before we know the full outcome, but we are expecting the best.

There is a fourth step waiting for Carly, she will need a shunt revision soon. Shunt 16 has been showing signs of a clog for awhile now, and we were hoping it would at least hold out until today's procedure. They removed some CSF through the shunt valve on Monday which provided a few days releif and they tapped it again after the procedure today hoping that will give her at least a few days rest after the gamma knife procedure. Thanks to everyone for holding Carly close to you today, it helps all of us.

Love, Brad