Next Steps

We met with Dr. Haas-Kogan from radiation oncology at UCSF this week to discuss treatment options for Carly. Radiation is the preferred treatment from her perspective and it was the consensus from the UCSF tumor board meeting, as it has a good track record of success for craniopharyngiomas. Radiation is not without issues though, and there are some side effects that we need to consider. Treatment would cause some hair loss and will likely make Carly extra tired during treatment, both of which are pretty minor. The biggest risk is pituitary damage, but Carly has already lost her pituitary gland during surgery so this is not an issue for her. The radiation can also cause damage to her vision, which is already affected to some degree, but she felt that this risk is very low. The most concerning risk is neuro-cognitive damage, which is unavoidable to some extent. Because Carly’s tumor is very small at this point the overall radiation dose and area that requires treatment are both small which will minimize this risk. Dr. Haas-Kogan believes that because of this, the expected damage would be less than 10%.

The type of radiation treatment that Carly would receive at UCSF is called IMRT (image modulated radiation therapy) which is a method that allows them to control the intensity of the radiation to help preserve nearby tissue. She would get treatments for 30 minutes each day, five days a week for six weeks. Since she would have to hold perfectly still for the treatment, and she would need to have anesthesia each time so she would also need to have a central line placed. (Placing an IV each day would be impossible.) This treatment would most likely begin on March seventeenth, and Carly could stick with her school and weekend routine during the treatments if she felt up for it.

One other radiation option is proton treatment. This is a less common treatment method and only five centers in the United States offer it. The advantage of protons is that they are very targeted, slowing down very quickly after hitting the tumor. This helps preserve surrounding tissue and may reduce some of the potential side effects that are seen in other radiation methods. We are consulting with Harvard/Massachusetts General on this option now and will see if it is a suitable alternative for Carly.

Whichever option we go with, treatment will begin soon so the tumor does not have time to grow any larger. We all know that Carly is an incredibly strong little girl, and with the support of Team Carly she will get though this. Your support also helps Christa and I each day, and we are very grateful for it.

Love, Brad

Unexpected

Carly has been feeling better since her shunt surgery and is back at school again. She has also been smiling a lot more since the surgery and she loves playing with her stuffed animal friends. This we are very thankful for, but we also got some news today which is not as good. Carly’s most recent MRI that was taken last week shows what the team at UCSF believes to be recurrent tumor. They had noticed an area that had them concerned three months ago, but Dr. Gupta was hopeful that it was just scar tissue. The area grew in every dimension in the most recent scan which is indicative of tumor and not scar tissue.  The concerning area is pretty small now, about the size of a lima bean, but it has been growing slowly for several months.

There are a few options for treatment that range from radiation therapy, surgery or some type of chemotherapy.  Each has its own set of strengths and weaknesses which we will be reviewing with a range of specialists over the next few weeks. We will also get second opinions from some of the most respected centers around the US to ensure that all of the best minds are thinking of Carly.  We keep hoping that this area will just shrink away on its own, but we also have to be prepared for whatever Carly needs. I know she is in all of your thoughts and prayers, and she can use the extra strength and healing now as much as ever.

Love, Brad

Happy At Home

Carly was discharged late yesterday and we are back at home again. Her recovery from this surgery is probably her best yet, and she slept well through the night last night. She is a bit uncomfortable from her two incisions, but Tylenol seems to be helping and after a few days that should pass. She is one tough and amazing little girl.

During her surgery they took a sample of her CSF to check for infection and other cell counts.  The initial results for an infection do not show anything, and it is pretty unlikely that this is an issue.  The protein levels did come back very elevated again which was not expected. As you might remember, this was an issue for Carly last spring and many of her shunt failures last year were attributed to high protein. At one point last year her protein level was 30 times the normal level but it had dropped quite a bit over the last few months. It is now back up to about 20 times the normal level but the cause is a mystery. We will follow up with neurosurgery next week to see if they have any additional insight but for now we'll just wait and see, hoping that this shunt can last awhile. Thanks for the love and support, we can feel it each day.

Love, Brad

A Baker's Dozen

Things can change in a hurry sometimes, and it certainly did for Carly over the last day. She had shown some signs that looked a little like shunt problems over the last few weeks, but we were never certain. On Monday and Tuesday nights she had a few cranky hours in the night, but we still thought that it could be something other than her shunt. That all changed last night when her symptoms went from low-grade and infrequent to full-on and non-relenting in just a few hours. She was able to sleep a little but we knew that she needed to have surgery today. We came to the emergency room in the morning and by 4:45 in the afternoon she was in the operating room to get shunt number 13. The surgery went smoothly, and Dr. Auguste found a big blockage that was preventing the shunt from working. He replaced the shunt valve and the blocked catheter in her belly. She already looks a lot better then she did earlier today, and she is resting pretty well right now. If all goes smoothly we will be able to head home from the hospital tomorrow.

Love, Brad

School Time

Carly reached a new milestone this week, as she started pre-school on Monday. Over the past few months we have been working on getting her placed at one of the special eduction pre-school programs in San Francisco and a few weeks back we learned that she would be placed at Grattan which is just a short 5 block walk from our house. She was outfitted with a wheelchair and will have a lot of special devices at the school to help her stay involved with the other kids in the class. Her class is all special needs kids, and the school also has typical kids, and we are hoping the extra stimulation from all of the kids will help Carly begin to stay awake longer and accelerate her development.

One little boy has already taken a liking to her, and he pushes her out to the playground and even gave her a little peck on the cheek on Tuesday. Carly will need to have her own teacher assistant assigned to her and this will be provided by the state. While they are working on hiring someone for that position, Christa is filling that role and stays with Carly for the four hour school day. They expect to have someone hired in the next few weeks and then Christa will be able to have a little time to herself during the school day.

Carly’s seizures remain under control since we started the most recent medication and she hasn't had a seizure since January 10. After over four months of seizures it is a great blessing that she isn’t needing to go through that now. Once she completed the taper off of the last seizure medication she has started to be more awake and is eating better. There does seem to be something that is bothering her that looks a little bit like a failing shunt at times, but we really have no idea what the problem might be. At this point we are taking a wait and see approach, and hopefully over the coming weeks these symptoms will start to fade. I will be sure to keep the school pictures coming.

Love, Brad

(I wrote this last night, but didn't get around to posting it. During the night Carly's symptoms that look like a failing shunt got more severe so we are pretty certain that she will need to have that replaced in the next few days.  I will keep you all posted.)