I’m bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won’t fall
I AM TITANIUM!

– David Guetta “Titanium”

Rachel is in ICU this morning, on the road to recovery. She is much improved from last night, although the muscles in her right temple hurt a lot. This was expected to be the worst pain area — chewing won’t be a lot of fun for the next week. She’s getting the pain meds she needs, and right now is sleeping.

I wanted to add some details about how the surgery went. After removing a cookie-sized piece of her skull, they put electrodes directly on her brain surface. This allows them to measure the electrical activity MUCH more precisely than EEG electrodes on the skull. Apparently it is very easy to identify seizure-causing areas from the pattern of brain waves, even when she is not actually having a seizure. Seizure areas have regular spikes. The results of this test made her neurologist Dr. Porter VERY happy — it gave her confidence that the surgery they were about to do was the right one.

The next step was removing the tumor. This was Dr. Cheshier’s turn to get happy. He told us that as he removed the tissue, it was REALLY obvious which tissue was tumor and which tissue was normal. Sometimes the distinction is subtle, but not in Rachel’s case (what an obedient little girl, to have a clearly-delineated tumor). This is what made him describe the surgery as “routine” and “perfect”. He had no trouble seeing exactly what to remove, and he is sure that he got it all.

The last step of the surgery was closing her back up. They put the piece of skull back in place, just like the top of a jack-o-lantern. Except in this case, they sealed it in place with titanium plates. The titanium is not magnetic, so MRIs and airport security will not be a problem.

And now Rachel REALLY IS Titanium!!!

The operation is over and it went PERFECTLY. Dr Cheshier just came down to give us a report and everything he talked about had gone perfectly. “Routine.” The limits of the tumor were clear. The seizure-causing areas were clear. He is sure he got it all. YAY!!!

Time to breathe.

Rachel has gotten to know Bruce’s colleagues, the Mint Mobile team, very well. She loves visiting the office, and they always have a lot of fun with her. (It helps that almost all of them are closer to her age than her dad’s!)

The team went on a trip to Disneyland in late September. Not organized by managers — they just wanted to go have fun with each other. While there, they stopped at a Build-a-Bear shop and made a bear to support Rachel. The routine is to put a single heart in a bear, and that is when the bear begins its life. The Mint team each put a heart in the bear, so she would know that their love was always with her.

Knowing Rachel, they dressed the bear in orange and blue, and named him Peyton Bear. Wow, what a great team!

During the summer we had Rachel’s mental capabilities tested. Even before her medical condition, it was something we were considering. We had gotten a strong recommendation forJohn Aulenta, a psychologist in Monterey, and had already been thinking that testing might be helpful. Now knowing that her brain had a most unhelpful displosion in it, the time had clearly come. Her new neurologist was also very interested to see the results, to help evaluate how functional her right temporal lobe was.

I have always had a very low opinion of classic IQ tests. I think they essentially test how similar the subject is to Einstein, and that always struck me as a most unhelpful way to evaluate humans.

The opposite was true of the tests performed on Rachel. Aulenta’s tests didn’t produce a single IQ number; they produced dozens. This much more resembles my experience with people: we are usually good at some things, and not so good at others.

For Rachel the results were incredibly striking. The hippocampus is the place where we form memories. The one on the left side forms language-related memories (i.e. reading a book). The one on the right forms visual memories (i.e. reproducing an abstract drawing you got to look at for 5-10 seconds). All of Rachel’s tests results bounced around in the 60-90 percentile range, except one: with visual memory she was in the 18th percentile.

For Dr. Porter, this was very strong evidence that her right temporal lobe was already not helping Rachel. It was strong evidence that a more aggressive surgery, with a greater chance of stopping the seizures, would not carry greater risks of compromised capabilities.

The second vacation from seizures provided by Keppra came at the perfect time. For the sixth consecutive year, Rachel had decided to build her summer around the summer musical theater workshop Hooked on Theater. This year would be her first repeat musical: Sound of Music. Since she had landed the lead role in Annie the year before she thought she had a good shot at Maria.

And she was right! She sang beautifully, which you can hear for yourself here.

We were very grateful she had the opportunity to enjoy performing this wonderful role (is there a better one?), in the midst of this sudden medical journey.

One of the questions Rachel asked Dr. Cheshier was how much of her hair would have to be cut.

Her hair. Just so you know, Rachel’s relationship with her hair is not about vanity. Outside of getting her bangs cut a couple of times, she has never had it cut. Ever. Her hair represents the constancy of her life.

So how does a girl with a positive outlook on life react to the prospect of losing her hair? By finding a model with an awesome half-shaved look! I don’t know if she will actually do it, but the official plan is for this to be Rachel’s post-surgery hair style.

So now we knew there was something in Rachel’s brain (well, something that didn’t belong there anyway), but we weren’t sure what to call it. Doctors seemed to like calling it a tumor, but we did NOT like that word. Usually we just called it a lesion.

When we asked Dr. Cheyette what “it” was, she said that there was no way of knowing without taking it out, and that it was most likely a dysplasia. This is just a general term for something didn’t develop properly. In other words, it was probably something that had been in her brain since she was inside her Mama.

One day Rachel was trying to remember the word “dysplasia”, and she called it a displosion. The perfect word! A dysplasia that had exploded into our lives. A Displosion.

Now you know.

Rachel went in for an MRI on the morning of the 18th. That afternoon I was at work, anxiously awaiting word from her neurologist about the results. The call came at 3, and I heard what are probably the scariest words of my life: “There’s something in her brain that shouldn’t be there.”

Dr. Cheyette immediately ordered a Contrast MRI for the next day. The purpose of the contrast was to determine whether the … thing … was getting blood flow. Blood flow would mean it was probably a malignant tumor.

Happily, the result of the Contrast MRI was that it was NOT receiving blood flow. In the picture, the darker color indicates that no contrast, and thus no blood, is getting to the … thing.

We breathed.