Date Set

Just a quick update today. We decided to schedule Carly's surgery for next Wednesday, October 1. The surgery will begin at 8:30 am, and we will stay at home the night before and walk up to the hospital for a 6:30 check-in time.

One of our friends, Chris Jensen, has posted a healing meditation for Carly. We want to share it with others so if you are interested in reading it click here. Below are a couple photos from our daily walks the last few days. The redwood tress of Muir Woods were particularly peaceful.

Love, Brad

The Plan

We just finished our meeting with Dr. Gupta, the neurosurgeon who is leading Carly's medical team. With the diagnosis known the meeting did not bring any surprises but discussing the well-being of the love of your life is never easy.

The next step in the plan for Carly is surgical removal of the tumor. There are many things about Carly's case that they call "challenging" but Carly is no ordinary baby. Due to the size, shape, and location of the tumor the surgeons will approach it through the right lobe of her brain. They will need to cut a window in the lobe to provide visibility of the tumor, and a scope will be used for the operation. They hope to be able to completely remove the tumor surgically. Their ability to do so will depend on how the tumor adheres to adjoining tissue, particularly the hypothalamus. If for some reason it does not peel easily, some tumor will be left behind and monitored. It could later be treated with radiation, but ideally not before Carly is three. The best scenario is successful removal of 100% of the tumor with no damage to surrounding tissue. There are a wide range of outcomes that we discussed with the doctor, but the only one that we expect is the best case.

The surgery will be scheduled for either October 1 or 8, with October 1 being the most likely date. We have until tomorrow to decide and we will see if we have strong feeling for one date over the other. The surgery will require a full day and will take place at UCSF, the same facility that has been handling Carly's care from the outset. Typical recovery time in the hospital is one to four weeks depending on many variables.

Here is a photo of Carly on one of her daily healing walks. These walks together with the support that we have received from our family and friends have been incredibly uplifting. Carly has an amazing group of people on her side, and with all of you behind her she will get through this. We love you all.

Love,

Brad

Diagnosis

The final pathology results came in today, and the tumor has been diagnosed as craniopharyngioma. This is a benign tumor that comprises 9% of all pediatric brain tumors. It does not respond to chemotherapy, so the next step will be a surgical resection (removal.) We have an appointment with the neurosurgeon at 9:30am on Monday to discuss the plan for the surgery including when it will happen, and how they plan to address the areas that are close to critical parts of the brain.

The basics that we know are that the tumor is very close to, or touching, her optic nerve, pituitary gland, and hypothalamus. During tumor resection, tumors either peel away easily from adjacent tissue, or adhere to the tissue. The team will not know how it interfaces until they are in surgery, and that will determine how much tissue they can remove. Any remaining tumor would typically be treated with radiation, but Carly is too young for this. In the ideal case, and the one that we are envisioning, all of the tumor will be removed and there will be no damage to any parts of her brain. Should there be any remaining tumor they will monitor it with hope that it does not grow until she is a few years older when she can tolerate radiation.


Here is a picture of Carly today and as you can see she is doing great and is feeling all of the love that you are sending.

Love, Brad

The Beginning

Well I said that I would never blog, but I also never thought we would be in this situation. We will use this blog as a way to update everyone on the latest status of Carly's health. We are visualizing her with a healthy brain and are surrounding her with positive thoughts and energy. All we ask of you is to do the same.

Here is how we got to where we are today:
On Friday September 12 we went to a last minute appointment with a developmental specialist at UCSF to make sure Carly was on track. We had a few concerns about her gross motor development and thought we might need a few exercises to help her in that area. While we were there they recommended an ultrasound of her brain to make sure all was good there. What they found, and what was later verified with an MRI, was a tumor about the size of a plum in the center part of her brain. This is a very large tumor for anyone, particularly a little girl.

We were admitted to the hospital that day and on Tuesday the 16th they performed a biopsy to get a small piece of the tumor to determine exactly what it is. The surgery took about one hour, and Carly recovered really well afterward. Blood labs have shown that all of her hormone levels are normal which means that she has normal pituitary function at this time (the tumor is right on top of this important gland.) Yesterday, Wednesday the 17th, we were discharged from the hospital and allowed to go home to rest and recover. In times like this you become thankful for little things, and we are thankful to be home.

The good news:
Carly is not in pain, and is acting like her cute little self. The fontanelle on her head has not closed yet, which means that the pressure on the brain from the tumor is being released. She has not suffered any brain damage (the brain is squished, but not damaged or bleeding). UCSF Children's Hospital is one of the 8 Pediatric Brain Tumor Centers in the US. Carly's doctor is the Chief of Pediatric Neurological Surgery and a renowned expert in pediatric brain tumors. The hospital is within walking distance of our home and we are surrounded by loving friends and family. In all, Carly couldn't be receiving better care or love.

What's next:
We are now waiting for final pathology results from the biopsy. They gave us immediate feedback on Tuesday, but will not be 100% certain of the tumor type until they finish additional tests. These tests will most likely be completed by this Friday, and they will meet with us to discuss the results. The results will determine whether Carly will have surgery next, or whether she will have chemotherapy to attempt to shrink the tumor prior to surgery. Either way, one of these treatments will begin in 2-4 weeks. In the meantime we will continue to fill Carly with loving energy, envision her brain healthy and take it day by day. Thanks to everyone for your love and support, we are grateful to have such an amazing group of family and friends.

Love, Brad