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

On The Outside

We are out of the hospital again, with Carly being discharged just before noon. We get a lot of comments from the hospital staff that it is really remarkable how quickly Carly can get out of the hospital after a shunt surgery.  I like to think that it is two parts amazing little girl and one part Team Carly that does the trick. Thanks for keeping her in your thoughts and prayers.

Love, Brad

Sweet Sixteen

Where to start? Carly recovered well from her respiratory issue last week and was discharged on Thursday afternoon. She was dramatically better than she was on Monday, and the medical team was pleasantly surprised by the speed of her turnaround.

Over the weekend Carly was doing pretty well, but we had the nagging suspicion that her shunt was not fully functioning. Yesterday these symptoms increased, and by 10pm last night there was little question that she would need a new shunt very soon. We spoke with the on-call neurosurgeon last night to let the team know her status, and at 8am Dr. Auguste called to let us know that his morning case was cancelled and they could operate on Carly if we headed up right away. By 10am she was in the OR and she is now recovering in the PICU. They found an obvious blockage in the valve which they replaced, so she once again has a fully functioning shunt. Carly is sitting in Christa's lap now drinking some apple juice and looking a lot more comfortable than this morning. We are all hoping that number sixteen is sweet.


Love, Brad

Change Of Plans

We have learned that you have to be ready for the unexpected and be flexible with plans, which we have had to put into action again. Carly started showing signs of a cold on Sunday afternoon, and overnight the symptoms got a lot worse. Her breathing was very fast and labored so Christa brought her up to urgent care for a checkup at 11am. A few hours later she was sent across the street to the emergency room, and by 8pm we found ourselves in the intensive care unit. Carly's breathing remained labored overnight and it is still rapid now but improving. It looks like another respiratory infection that has taken a good hold of her, but we expect that it will just be a few days before she is able to head home. We had to postpone her gamma knife surgery that was scheduled for tomorrow, as being under anesthesia for a full day is not a great thing for someone with a respiratory issue. It will be rescheduled in about three weeks, and hopefully we can avoid any surprises between now and then.

Thanks to everyone who came out for the walk this past weekend, both in person and in spirit. It is always uplifting to see so many of our loved ones in one place. I will post photos soon.

Love, Brad

Walk In The Park

The Brain Tumor Walk is almost here, and we wanted to thank everyone that has joined Team Carly. There are a few more days left to support the team if you haven’t already and please spread the word to friends, family and co-workers. Up to this point the team has raised over $11,000 and is once again in the top ten of all teams at the walk. Supporters of Team Carly come from all over North America, as well as Europe, Asia and South America which is a tribute to all of you and the power of Carly’s spirit. For those of you that can make it in person, we will meet up at a Team Carly sign before the walk, and we plan to have a group picnic in Speedway Meadow after the walk is finished. We can’t thank you enough for your support for the walk, and every day that we can feel the love from everyone coming our way.

After the walk comes the next step in Carly’s treatment. As you all know Carly’s tumor has made a return appearance, and while it is much smaller than it was originally we need to treat the recurrence to prevent it from getting larger. We investigated both traditional photon/fractionated radiation treatment as well as proton treatment at Mass General in Boston and after speaking with several experts we have opted for a third choice of Gamma-Knife treatment (a type of sterotactic radiosurgery.) This is not the common treatment for craniopharyngiomas, but in Carly’s specific case it looks like the best option for treating the tumor while minimizing any harmful side effects. The radiation will be targeted only to the area of the recurrence, and it will kill any cells that it comes in contact with. It will be months, maybe years, before we know if it was successful in eliminating every tumor cell, but the treated area should stop growing immediately.

For the treatment they will attach an external frame to Carly’s head prior to an MRI. They will use the MRI to guide the radiation lasers to only target the tumor, and using the frame on her head for alignment in the Gamma-Knife machine they can be accurate to less then 1mm. She will be under anesthesia for it all, and should not feel any pain during or after the procedure. The Gamma-Knife treatment itself will last about an hour, and when she wakes from her anesthesia she may be able to head home or possibly stay at the hospital for one night. It will be a long day, with a very important outcome, and we ask everyone to picture Carly as the perfect little girl that she is, tumor free and ready to move onto the next step in her recovery.

Much love to you all from Christa, Carly and I.