Wednesday, May 15, 2013

The Month of Darkness

For the month of May, in honor of brain tumor and NF awareness month (so convenient to have them at the same time!), I am trying to tell our family's story of living through both. I hope that by the end folks have a sense what brain tumors and NF can do to a family, why and how we can work for better treatments (and maybe a cure!), and why we should always, always hope.

May 15

Brain tumors are horrible dastardly beasts.

NF can cause brain tumors. So in our world, NF is also a horrible dastardly beast.

And February 2006 was one of the lowest, darkest portions of our journey.

G’s scan looked horrible. There was this weird area that wrapped around the ventricle…

We have never really spoken of this to G. Now, 8 years later, I think I can speak to it a little, but for many years only a few people knew the truth about that month. But now, knowing that my G is still here, still living and laughing and loving, I can name this truth and let hope come through the darkness.

Without being totally specific, our doctors thought that Genna’s tumor had undergone malignant transformation, that is, it had turned into a fast growing, aggressive, incurable cancer.

We were given a timetable of life that did not get us to 5th grade. 4th grade was questionable.

TPCV was done. We needed to decide what we wanted to do. I just cried and cried and cried, I could taste the pain, the pain of my child’s vanished future, the hole in my family.

Typing this, even as one of our friends is facing this moment, is excruciating.

The few close friends who knew what was going on rallied and gifted us a camcorder to make memories and a laptop for those CHOP stays. We were blown away by this generosity, and by the hats pouring in, and by the people helping us with a concert we had planned to have to raise money for the Children’s Tumor Foundation, an NF organization ( ) , our first Concert for a Cure. I couldn’t even see straight most days, the fear and grief were paralyzing.

I think I emailed our doctor 57,000 times with frantic despairing questions, and she answered every e-mail.  She stayed by us in that awful time, not just AT CHOP, but through e-mail, as a lifeline.
In the middle of this month we went to see David Bailey in concert; David Bailey was (at that time) a 10+ year glioblastoma survivor who sang of hope. That evening in PA, through snow and dark, was such a lifeline for us. He told us every day we woke up meant God still had something for us to do. This hit me really profoundly. We still had a mission, we still had to hope…even our doctor told us to always hope.

We were not done with treatment, but if the CHOP tumor board’s thoughts were correct, any treatment would simply prolong things. While talking to the docs about our choices, watching G play in the playroom, even Dr. B couldn’t believe we were having this horrible conversation. G just looked like a normal kid (and then she & Rosie started licking Pringles crumbs off the playroom table...ew ew ew! Normal kid ew! )

We had the option of just chugging through random treatments, or having a biopsy to know for sure what we were dealing with. After a lot of soul searching, we opted for biopsy. And of course G, being a smart kid, wondering why I had been talking to Dr. Storm in the playroom, asked if she needed an operation…at that point I wasn’t sure, which is what I told her. We really try to always be honest with G, let her lead what she wants to know, but within that we are honest. Always.

She didn’t need to know that timetable, we didn’t know for sure yet…but if we only had a year or two, it was going to be one hell of a year or two. We needed to know.

So surgery was scheduled for February 21, 2006, 3 days after that Concert.

We told no one except immediate family.

The concert was emotional and amazing, a beautiful evening put together by our friends and family.

And then I had to tell Genna that yes, she WAS having brain surgery. We cried together on her bed, just cried and hugged. I told her we needed to know what kind of medicine would be best, so we had to do an operation.

I know this is choppy. I am sorry. It’s like pulling off steri-strips, typing this one.

I had requested the Santa Claus anesthesiologist again, he was such a comfort to us during surgery, I cried at him, and he didn’t run away, he comforted me. I have never forgotten him. His name is actually Dr. Schwarz (sp?). He is awesome. And after the surgery, when I was in despair and counting the balloons stuck on the CHOP atrium ceiling, Dr. Storm (the neurosurgeon) said to me, “You know, this could just be an NF thing”. A glimmer of hope. He was so zen, still so zen. He answered all my frantic pre-surgery e-mails too...

We were just relieved that she survived the surgery (those are some scary consent forms to sign. terrifying.), this was our CB entry the day after surgery:

February 22, 2006

...I am moved to tears by all the prayers & support, thank you all--if only I could tell you how you carry us...

Genna came through the surgery fine...we had a 6 hour wait (our specialty), then an excruciating wait after 3 pm when they wheeled her so quickly away...I didn't even get to say I love you...but Dr. Schwarz is a gem of a human being (the anesthesiologist)--he kept giving us updates, &; Dr. Storm is meticulous...G came out ok, around 7.

When asked how he thought the incision looked (before we saw G) Dr. Storm said, "Well, I always think they look good!" I guess CONTEXT is everything, but it did make me laugh.

Spent sleepless night in PICU (well, G slept mostly)...

incision is ghastly. from the front of her head (by the part)a long curving line down in front of her right ear.  (I have no pictures. I probably should, but I don't).

Only JUST NOW did she admit to major pain, take some meds. She is very, very quiet...which is, I suppose, an indication of how she really feels (like her mom in that regard).

And then, we just had to wait, and see what our fate would be.


Today, I ask you to please, please pray for our friends, the Dickey family and beautiful Caitlin.  I am so sad and angry that they are not getting the reprieve we did in 2006. I am heartbroken and angry about what brain tumors are doing to Caitlin and her whole family.  Please pray for strength and comfort and peace for them in this difficult time ahead.  Thank you.

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