Eighteen

Carly is out of surgery now, with shunt number eighteen in place. The surgery went smoothly and Dr. Gupta said that the valve was visibly clogged again this time. With this valve lasting even less time than the previous type he decided to go back to the original valve. The team will be discussing the options for trying to lower the protein levels in her CSF which continually clog her shunts. Hopefully we find some solution soon.

Love, Brad

Back Too Soon

Shunt seventeen didn't turn out to be the one. After only two weeks it is not functioning properly and needs to be replaced. We spent last night in the hospital and Carly is heading into the operating room in the next hour or so for surgery. They will wait to see which parts aren't working to decide what type of hardware to use this time around. Hopefully whatever is used can last longer than this one did.

Love, Brad

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

Step Three

We just met with Dr. Sneed and the radiation plan is in place. The tumor has grown since the last MRI, but is still a good size for this type of treatment. The treatment will last 75 minutes after they get Carly positioned and they believe the plotted treatment area will take care of all of the visible tumor. The tumor is close to part of her optic pathway, so all of our energy is focused on keeping that area safe while the tumor goes away. Thanks for the love and support that we are feeling all day.

Love, Brad

Step Two

We just got an update that everything is going well. The MRI is finished and Dr. Sneed (radiation oncology) and Dr. Gupta are planning the treatment now. This could take a few hours, and they will review the plan with us before starting the treatment.

Love, Brad

Step One

We just handed Carly off to the team that will be taking care of her today. She is under anesthesia now and Dr. Gupta will be placing a halo frame on her head soon. Once that is in place she will get an MRI to image the tumor. They will use these images to plan where the radiation will target, and the frame will allow them to precisely align her in the Gamma Knife machine. After they have a plan they will call us over to discuss. This should be in about three hours or so. Thanks for keeeping her in your thoughts.

Love, Brad

Thank You!

I have been meaning to post this picture of Team Carly at the Brain Tumor Walk for awhile now. It was a great day, and so amazing to see everyone in person and to see that Carly’s team raised $13,981. We are moved by the generosity of all of you and cannot thank you enough. We can only hope that this money, and the other funds raised for this type of research, can help find better treatments and cures for brain tumors.

We are also moved that our good friends on the east coast have pulled together a team for the New York City Brain Tumor Walk. Team Carly East will be walking on June 18, and you can bet that we will be there in spirit. If you wanted to walk with Team Carly but live on the east coast, now is your chance. Thanks East Coast Crew!!!

Carly has been doing pretty well since her last shunt surgery. The best news was that she was doing well enough only four days after surgery to make the trip to North Carolina to attend the wedding of our very good friends. That was a great gift for all of us. She is scheduled to have her gamma knife radiation treatment next Wednesday, June 8th. It will be an all day procedure, and we are already focusing our energy toward envisioning a perfect outcome from it. We will keep you all posted, and appreciate your love and support

Love, Brad