Thursday, May 16, 2013


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 16

Well, G had to recover from brain surgery first.
She looked like Rocky Balboa at the END of the movies. She was berserk from steroids, berserk from the entire ordeal. At one point she screamed, “NOBODY EVER DOES ANYTHING NICE TO ME, EVER!” while a nurse was removing the arterial blood pressure monitor, an unpleasant task. But it was so funny how she said it. We laughed. Too much. But it WAS funny.

We had lots of visitors, it was a different world from our previous hospital stay.

After a remarkably short time (4 days!) we were cleared to go home! Of course Dave wasn’t there, but my sister and my friend were visiting…in a teeny tiny sports car. We jammed into that car… (as listed in Caringbridge)

1 big suitcase
1 overstuffed computer bag
1 backpack full of snacks
1 tote full of crafts
1 miscellaneous bag of snacks, crafts, and a small soft cooler
1 bag of stuffed animals given to G since we've been here
1 Hello Kitty bag with Genna's animals from home

into Mark's sporty car.

the five balloons might be tricky.
the four people might be trickier still...

but we're coming home!

It was like a clown car... but Never stand between a Camiolo and the way OUT of the hospital. ;)

Once home, G was still kind of a wreck. We had been together SO much, she had massive separation anxiety. Ergh.

And we waited. 

The day before our scheduled appointment, the nurse practitioner called to reschedule. Our results weren’t back yet.

Um, ok.

And yes, our doctor wondered if I was alive, I had stopped e-mailing every 15 seconds. But really, I had asked all my frantic questions. I could only wait.

Finally, on March 2, 2006, we were set to go to CHOP. It was the 4th anniversary of Dave’s grandmother’s death by brain tumor. I wasn’t sure if this was a good day (ie Grandma would be All Over God about this) or yikes (for obvious reasons). On the way to CHOP we drove by several horrible accidents (sigh) and heard Casting Crowns’ song “Praise You in This Storm”, which is pretty much about “why haven’t you answered our prayers already, God? But ok, You got this”…I tried to hold things together. But we were so afraid. So afraid.

And then we got to CHOP… I did not go into cardiac arrest, even when a social worker was waiting in the exam room for us.  Hospital lesson: Social Worker waiting in exam room for you is often a BAD thing.

Thursday, March 2, 2006 5:26 PM CST


Must type quickly, supposed to be at MIL's birthday, with the best present ever.

The ominous areas in G's last scan seem to be a weird NF thing, possibly unique to Genna (unusual to hear that at a major pediatric brain tumor center). But we were given all sorts of much more dire possibilities, saw the words written on every consent form before surgery...can't even believe it. Actually might say "Yay, NF!" (although I told Dr. B we DON'T have a cheer like that!!)

And we will be restarting the TPCV, which kept the known tumors stable...can't even believe it.

THANK YOU ALL FOR ALL YOUR PRAYERS AND SUPPORT!!! We cannot thank you all enough...YOUR prayers carried us through all of this. The road ahead is still long, and rough, but we are still FIGHTING TO WIN...thank you!!

…may add more later, really have to run, but I know folks are waiting...couldn't wait to share this with all of you!!!

Kristin the AMAZED!!
off to eat pizza!!!

It WAS a weird NF thing.
Dr. Storm was right.
The pathologists were a bit flummoxed, nobody knew quite what to make of it, this weird gliosis-y thing.

again, from Caringbridge:

E-mailed Dr. B last night...confirmed that she has NEVER seen this before, the 3 neuropathologists have never seen this that would make this turn of events a ....

miracle? Not sure what to do with that...other than thankyouthankyouthankyouthankyou....

3 Neuropathologists, 1 Neuro-Oncologist, (and a partridge in a pear tree?)---mystified (and happily so, I might add).

onward & upward, and thank you all for praying...

BT lesson: SOMETIMES, VERY RARELY, it is ok to stump the neuro-oncologist. Very Rarely.

But we had time back. And with time could come research and with research we can get a cure.


So back to chemo, back to the routine, back to living in the shadow of NF. But this time, the NF thing was a win. Getting to do chemo was a miracle. Not the miracle we had originally prayed for, but we were so grateful. For years after the radiologists still referenced this area by the scary terms the biopsy proved wrong…but THEY WERE WRONG.

from Caringbridge: So the battle is still long; but now we know G can fight another day, which is colossally huge. I can’t overstate miraculous this is—multiple doctors in varying disciplines prepared us for, well, really not good stuff…strange, so strange how the definition of a miracle changes. Strange how “weird NF thing” is better than alternatives. As my dear friend Susan Amato said, who knows what else God can do? (or something like that, I know I’m squashing that up).

We had our future back. We had our G back.

And less than a month after G’s surgery, 3 weeks after Miracle Thursday, we went on G’s Make a Wish trip, another miracle of love and generosity.

It's pretty surreal...can't believe the day is finally here, can't believe we're doing Make A Wish. Talk about the things you never dreamed you'd do...I had the opportunity recently to express to someone that the price for Make A Wish is so very high. We'd trade the trip to Disney in a heartbeat for health for Genna. Half a heartbeat….

Genna said today that it made her happy & sad that we are going. She had trouble expressing what she was trying to say...finally got it out that it made her so happy people were doing this for us, it made her want to cry.

Cruella met us at the gate to Magic Kingdom..."HElllloooo, Dahling!" she said to Genna as she swept through a crowd, straight to G. G was very concerned because Chip took her little camera.
EVERY character treated G like visiting royalty. It was astounding.

We rode that Amtrak from Newark to Kissimmee, a wondrous adventure (I LOVED it, sleeping on a train is awesome, I felt like I was in a history book), we stayed at Give Kids the World (a place completely built by, run on, and infused with love), we hugged princesses and unnaturally large chipmunks (G was ALL about the characters, she only wanted to hug characters, do crafts, and ride the occasional carousel) . We had the most amazing miracle time ever.

Sea World. I love that Andrew is holding Rosie's hand.
 No characters stepped on Rosie’s little toes (she was very concerned about this), Genna felt like a princess, even Andrew had an amazing time. Aside from a weird sunburn on G’s hands and feet, everyone stayed healthy the whole time, also a miracle, since Genna was back on TPCV again…
Genna singing YMCA--her favorite-- with one of the volunteers at Give Kids the World.
You can just see where the incision was this day, when she swims, you can see the scar.

Things were still tough. I didn’t know whether to laugh or cry or twitch or hide under my bed or climb a mountain. But we had another morning to wake up; our work wasn’t finished yet.

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