Monday, April 27, 2009

Checkup From The Neck Up

Carly had a checkup with Dr. Gupta today and he is happy with her progress. Her head ultrasound showed that her ventricles have not gotten bigger, meaning that for now she is still managing without a shunt. It will be some time before we can officially cross hydrocephalus off of the list of conditions that Carly will have to live with, but this is a great sign. She continues to be very sleepy, sometimes falling asleep in between bites when eating solid foods (which as you can imagine is pretty cute.) Dr. Gupta said that this is still not unusual, and that it was a good sign that she continues to show little improvements during the periods that she is awake. Both her moments asleep and awake are a blessing, and Christa and I are thankful for Carly's incredible strength every day.

Love, Brad

Friday, April 24, 2009

Our Cute Little Monkey

Carly has been enjoying her time out of the hospital. Her electrolyte levels have been perfect all week, earning her a three day break from blood labs. Her fontanel remains nice and sunken too, a good sign that she is managing her cerebral spinal fluid on her own. She will have a head ultrasound and check-up with Dr. Gupta on Monday for an official progress report. She is still very sleepy, spending most of the day asleep but this is still normal only three weeks after such an extensive surgery. She is also still working on getting her right eye to open all the way, but her ophthalmologist is certain that it is only a matter of time before that fully heals too.

Next Saturday, May 2, the National Brain Tumor Society is having a walk in Golden Gate Park to raise money for brain tumor research and support. Christa's sister has formed a team for Carly and we will all take part in the festivities (hopefully the warm weather returns by then.) We want to thank everyone who has already joined in, and spread the word that the last day to register for the walk is next Wednesday. If you are in the Bay Area and can join us for the walk or if you would like to donate to the cause just click here.

Love, Brad

Saturday, April 18, 2009

No Place Like It

Carly was discharged this afternoon and we are back at home. The warm sun felt good to all of us on the victory walk from the hospital and our sofa has never felt so comfortable. Carly even gave her (now customary) smile as we turned the corner from the hospital and headed downhill toward our house. After a few weeks of sleeping in the PICU, we all should get a good nights rest in the comfort of our own beds.

Carly will have daily blood checks over the coming week to monitor her electrolytes and she will have a head ultrasound in a week to see how she is managing without a shunt. She is still very tired and will need to work hard to get back to 100% but she is a tough little cookie and up to the task. Thanks for all of the support which has helped us get this far, we will continue to draw on it as we start the next chapter in Carly's recovery.

Love, Brad

Wednesday, April 15, 2009

Mighty Little c

Carly continues to make small steps in the right direction each day. We are still in the PICU, a requirement for patients who have an external ventricular drain. Neurosurgery has been weening Carly off this drain over the last several days and it has been clamped since last night. Since the clamping, Carly has been handling her cerebrospinal fluid on her own without the need for a shunt or external drain. She will have a CT scan tomorrow morning and if everything looks good the drain will come out. Carly's shunt will stay in place, though turned off, for several months to see if she can manage without it in the long run.

Carly is still pretty quiet, mostly sleeping and spending a few hours a day awake. She can move both arms and legs and her right eye is starting to open wider, something that it didn't do for the first few days after her surgery. This is all expected for someone who went through what one of the attending doctors called "an extreme surgery." He also said that in his 34 years at UCSF he has never seen such a large tumor in someone so small (and he isn't the first to tell us this.) She really is a little miracle, and she hasn't lost an ounce of the fight that has gotten her this far. The entire medical team is really pleased with her progress and soon we can start focusing on physical therapy, hopefully from the comfort of our home.

Love, Brad

Sunday, April 12, 2009

Happy Easter

Easter, Passover, Spring, no matter what your religious background is, this time of year always brings the promise of new beginnings. The trees are in full bloom here in San Francisco with tiny new leaves popping out everywhere you look. It certainly marks a new beginning for Carly, who is celebrating her 15 month birthday today and starting her second week of tumor free living. She continues to sleep most of the day, but it seems like a purposeful healing sleep and she looks very peaceful. She nursed for the first time since her surgery today, a great step forward and a perfect Easter gift for Christa.

Love, Brad

Friday, April 10, 2009

And Don't You Come Back No More

The consensus from the tumor conference is that Carly's surgery was a successful gross total resection. This means they all believe that the tumor was completely removed which is music to our ears! They reminded us that the MRI is only so good and there is a chance that there are microscopic pieces remaining which could grow in the future. Carly will have follow up MRI's for the rest of her life to monitor this, but the odds are now in her favor.

Carly has been in less pain the last few days and for now she only needs Tylenol to help her. She is still very quiet, looking around a bit but not moving very much. She has a feeding tube to make sure she is getting all of the calories that she needs and the tube is definitely irritating her. We are hoping that she will start her normal eating pattern soon so this tube can be removed. They are also monitoring the pressure in her head with an external drain coming from the center of her head. So far the pressures have been low and there has been little drainage which may indicate that she will not need to keep her shunt. This would be an amazing bonus prize. They will continue to monitor this for several days before making a decision on whether to reconnect the shunt or not. We continue to surround Carly with love and music, and all three of us are drawing strength for the healing energy and prayers that you all are sending.

Love, Brad

Wednesday, April 8, 2009

Sleepy Monkey

As Carly has woken a little bit more, she has been more uncomfortable. Given the length of her surgery and considerable swelling of many parts of her brain this was expected. She has been on a pain medication regimen over the last few days that has helped her to get the healing rest that she needs. Dr. Gupta said that it could take many weeks for her to get back to her normal wakefulness, but she is already ahead of many of the patients that he has treated over the years.

Dr. Gupta also said that the MRI images look very good. He cannot see anything that he thinks is tumor and although there is noticeable swelling in the areas of the brain that were touching the tumor, there is no indication of any permanent damage. One radiologist report indicated that there is a small area remaining that is either scar tissue or tumor and this area will be investigated further during their tumor conference on Thursday. Carly has a lot of healing to come, but she is definitely on the right path.

Love, Brad

Sunday, April 5, 2009

Peacefully Healing

Carly has been pretty quiet since the surgery, opening her eyes on a few occasions and looking at us but mostly sleeping. She was taken off the ventilator after her MRI yesterday and is easily breathing on her own which Dr. Gupta indicated is a good sign for her recovery. She is pretty puffy from the surgery, but still looks as cute as a button.

Dr. Gupta said that the results from the MRI look very good. He has not reviewed the entire scan yet, but could not see any residual tumor in the images that he has examined. The best radiologist at UCSF will be in on Monday and his report will verify if there are any traces of tumor remaining. Dr. Jian, the neurosurgery resident on call over the weekend, said that he was VERY impressed by the surgery after looking at the before and after MRI images and also made a point of saying that he thinks Dr. Gupta and Dr. Auguste were being modest when they said the tumor came out easily, and that their level of skill had a lot to do with it. With their skill combined with the power of love and prayer from all of you, the tumor didn't stand a chance. For now we are filling the room with Carly's favorite tunes and healing energy.

Love, Brad

Saturday, April 4, 2009

A Note From Mom

Thank you. Thank you. Thank you. I believe in the power of love, prayer and positivity. Yesterday we could feel it whipping through the hills UCSF sits atop. Brad and I were calling it wind power, and it came from you all across the country and different corners of this beautiful earth bringing with it such strength and love. It was blowing hard all day yesterday and the day before, but today has been replaced with a calm breeze.

Carly was strong and steady through the entire 14 hour surgery. Dr. Auguste (Dr. Gupta's very able young partner) said it was like a new tumor and a new brain compared to what they encountered on October 1st. The tumor just came right out in big pieces with minimal bleeding. It was very easy to separate from her surrounding brain which had become more firm and resilient over the past 6 months. At the end of the long procedure, Dr. Auguste and Dr. Gupta felt they had removed all of the tumor. Dr. Auguste was cautiously exuberant, Dr. Gupta a more serious version of pleased.

Dr. Gupta reminded us that Carly is not out of the woods yet. Her brain was heavily manipulated and needs to heal. Her pituitary gland was enveloped by the tumor and in the end could not be saved. Over the next few days we will be working closely with the endocrine team to work out her regimen of medications to replace pituitary function. This can be successfully managed.

Carly is scheduled for an MRI this morning, and we are hopeful the images will verify that the entire tumor has been removed. I cannot explain how I feel this morning, too many emotions. I am joyful, mixed with caution. I am incredibly grateful for all your support and love and humbled by the number of people little Carly has touched. We all thank you with our brimming full hearts.

This is a new beginning for Carly and a new year for Brad. Brad said this is the best birthday present he could have imagined.

Much love,

Friday, April 3, 2009


We just talked with Dr. Gupta and they think they got all of the tumor out! They are cautiously optimistic, and Carly will have an MRI in the next day or two to verify that the tumor is gone. I will send more details tomorrow, but Christa and I want to send a heartfelt thank you to everyone who is helping surround Carly in healing light. She has more healing to come, but the road ahead looks promising.

The Latest

We just heard from the OR and things are going well. They are nearly finished resecting and will start closing soon. They hope to be finished in the next hour or two and we will meet with Dr. Gupta to get all of the details.

Love, Brad

Still At It

The latest word from the OR is still good. Carly is stable and Dr. Gupta and his team are working away. They still expect to be at if for quite awhile.

Love, Brad

Hard At Work

Carly and Dr. Gupta are still going strong. They have many hours ahead of them, but are getting a lot of strength from the prayers and love you are sending.

Moving Along

The word from the OR is still good. Carly is very stable and the resection is moving along. They said they still have a long way to go and we'll keep sending updates. Thanks for all of the support.

Love, Brad

Slow And Steady

Things are still going well in the OR. They are still making their way to the tumor but Carly is doing great.


We just got the first update from the OR and everything is going fine. Dr. Gupta seemed confident this morning and Christa and I feel much calmer than we expected. I know that we are feeling you all helping us and Carly is surrounded by love.

Go Time

The big day is here and we are on our way up to the hospital. Carly's surgery is scheduled to start around 7-7:30 and should take all day. We will be getting updates from the OR throughout the day and will keep you all posted. Knowing that you are all sending love helps to give Christa and I some peace on a very nerve-racking day.

Love, Brad

Wednesday, April 1, 2009

Fuzzy New Friends

Carly had a great time today playing with some of her new cuddly friends that she was given over the last week. We'd like to thank everyone for the thoughtful gifts, cards, emails, comments and prayers that we have been receiving. Just knowing that there is such an amazing network of people behind us makes every day easier.

Love, Brad