Tuesday, May 17, 2011

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

Monday, May 16, 2011

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

Tuesday, May 10, 2011

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

Thursday, May 5, 2011

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.