May 13, 2006

12:30pm

Dear Family and Friends,

You may or may not have heard that yesterday was a very difficult day for our family. In just one day we learned that little Rosalie has a brain tumor at the back of her head (in the cerebellum) and she will need to be operated on.

This comes, of course, as shocking news. But for those of you who see us on a regular basis, you know that we have been worried about Rosalie's balance for about the past two months. In the past two months she has showed a significant regression in her ability to walk and she has fallen down quite a bit.

Mark and I went to our pediatrician to see what was the matter. She ruled out anything with the ears and wanted us to make an appointment with the ophthalmologist. Her appointment isn‚t until the beginning of June, but two weeks ago I was so distraught about the falls she was taking, that we decided to go back to the pediatrician. At this point, she referred us to the Child Development Center at CPMC. There, we met with an excellent physical therapist who ruled out sensory issues, cognitive issues, behavioral issues, or fine motor issues. She told us to get to a pediatric neurologist ASAP. She was particularly concerned by a reaction Rosalie had to one of her tests on her ankles. She had a reaction called clonus, which basically means that her foot kept jittering after she flexed it. She also noted that she was showing ataxia (lack of balance/coordination). That appointment was on Thursday morning.

On Friday morning we went back to our pediatrician just to get some face time while she helped us get an appointment with a pediatric neurologist. She also re-measured her weight, height, and head circumference which showed that while her weight and height were in the 75th %ile, her head circumference was off the chart. This was another red flag to us.

We got an appointment with a pediatric neurosurgeon for Monday morning, but after talking to my two doctor friends, Jimmy Beck and Dan Burnett, I felt encouraged to push, push, push for an appointment that very day. And so we did. We went to UCSF radiology for a CT scan. It was a little traumatic because she had to lie still on a board. Luckily, Mark is the master distracter, and was able to keep Rosalie entertained. Then came the worst part - the waiting. A technician told us that we needed to go across the street to pediatric urgent care to meet with a neurosurgeon. At this point I pretty much went into shock. Physical shock. I thought I was going to faint or vomit.

We ended up waiting for the neurosurgeon for about two hours. Those were terrible two hours. Mark was great with the girls. And some nice nurses were helping us as well. But I was literally shaking and so a social worker, and later our friend, minister, and wedding officiant, Deborah Wright, came and helped.

Finally, a neurosurgery resident came to meet with us and he broke the news that she has a mass in the back of her brain. He noted that this is the most common kind of tumor found in children and it is operable. There are 3,000-5,000 brain tumor operations on children in the US each year. They won't know exactly what kind of tumor it is until they remove it. He feels very confident that she will heal well, as children often do.

From there, we checked into the UCSF Children's Hospital, which is where we are right now. The nurses are great and there are lots of child-appropriate things for Rosalie to play with. We get the sense that the next week or two will involve a lot of videos and a lot of vanilla ice cream. Rosalie is very happy about that. Susannah is also here with us. They have a crib set up for her.

Last evening, Dr Perry, the pediatric neurosurgeon, came to meet with us. He was terrific. He had great bedside manner and answered all of our questions in a kind a respectful way. He specializes in removing tumors, and he has performed this surgery over 200 times. He will be performing the surgery next Tuesday or Wednesday. The reason why they won't perform the surgery sooner is that he'd like to give her steroids for a few days leading up to the operation.

Rosalie is now recovering from sedation after an MRI. Preliminarily, the MRI shows that there is no cancer in the spine and that we are dealing with one mass (as opposed to several).

Rosalie has been unbelievable. She is our little star, and we are so proud of the way she has been handling all these medical procedures. She knows that there is a boo boo on her head and we are going to make it all better. I just keep telling myself that this experience in her life will make her stronger in the end.

Please keep her in your prayers. She is so special.

And please feel confident that everything is going to turn out fine. We are in the right place, and we are lucky that the mass is operable. It's also good that we caught it when we did.

In the interest in maintaining a peaceful environment for Rosalie, please let us call you, rather than having you call us. We will try our best to send out periodic emails to update you all.

Lots of love,
Carolyn