Sunday, May 26, 2013

Storm in the Playroom

I almost forgot to post today...
This one is a little discombobulated, but it is so late, I just want to get something up...and as I mention below, THIS ptsd fest is still fresh.  I just don't have the energy to dig out pictures, but I will tomorrow.

May 26

As we entered summer 2011, we made another med switch for Genna in a desperate attempt to help her with her anxiety, we realized Rosie needed to wear an earplug in her bad ear while swimming, and we tried to get my son to survive sophomore year of high school.

July of 2011 was full of fun, a trip to Lake George with friends, a wondrous trip to Camp Sunshine with our bt friends, and then birthdays for Andrew (16!) and Genna (13!)…I officially had TWO teens in the house.

In all the haze of frosting and festivity, I almost forgot a double scan day was on the horizon.

Ok, that’s a total bold-faced lie. I didn’t forget.  Scan day is always like an elephant on my head.

July 26 was scan day. It went like this. (this PTSD is much fresher, so…yeah).


just a short note...

Rosie's scan was rock solid stable. They did an extra series of ear pictures, her bones & nerves are intact. She didn't need contrast, (ergo no iv), the scan was shorter, she was triumphant and happy.

G's scan...not stable. The nurses took 4 sticks to get her iv...she needed extra meds to fall asleep, then was nearly inconsolable when she woke up (a side effect of the meds). Thanks to Joan Kerpan and Kyle's Peace G did recover from that with a new tie-dye shirt, a blanket, and coloring pages. But in the middle of her activity the neurosurgeon came into the playroom...

and time stood still.

My insides just curled up like the feet of the Wicked Witch of the East after the house fell on her.

He asked us some questions about how G has been feeling, palpated her shunt (which was working ok), said her ventricles were a little funky (my word)...and left.

Well, it doesn't take a brain surgeon to figure out WHY the ventricles might look compromised....

In some ways it was better, I had near cardiac arrest THEN, so when Dr. B cheerfully talked to the girls without the normal "stable!" at the start, I was prepared.

G has another area of growth, again in her hypothalamus, this time across from the area that scared the crap out of us last summer. So we have a blob on one side and Halley's comet on the other (that's last year's yikes, so 2010).


We rescan in 6 weeks. Then, if it's still bad...

Good thing we learned so much at Camp. We might need that info sooner rather than later.

I am going to go collapse (or, more likely, wander the house in a kind of wired dismay, I was too calm at CHOP) , and I will likely hide a few days...thank you for praying for us, and please pray for my G. She's ok right now, but I don't know how she'll feel once she thinks about this with a clear head tomorrow.

thank you, and peace,


Brain tumor note: if a neurosurgeon comes to find you in a playroom, you are totally, epically, thoroughly screwed. SCREWED.

Monday, August 1, 2011 1:04 PM CDT

Hey again.

So…here we go again.

I should be researching, I should be reading up on things, I have not started that yet. I feel the inexorable passage of time acutely, but I am finding it hard to get ahead.

For those who have asked, Genna is doing ok right now. She really hasn’t said ANYTHING about the scan. I mentioned at Costco the other day that we were going to stock up on snacks and such (pretzels, granola bars, the staple foods of our house) before September, and she put her hands to her head…I hastened to remind her that we did this last year, too, and just ended up with months’ worth of peanut butter.

We can always hope, right? It’s just that last year’s Yikes was NOT introduced by a neurosurgeon in a playroom. Mega Eek.

G did ask me, oh so quietly last night, if she had to start chemo again would she get another port.
The 4 Stick Yikes of last week’s scan has been bothering her.

So she IS thinking about it, and I expect I’ll be fielding more questions with uncertainties and crappy answers over the next 5 and a half weeks.

She had an odd moment the other day, her eyes felt blurry…but she passed the maternal shunt check, and after a little rest felt better. Ugh.

Personally, I kind of don’t know what to do with myself. So…did I call a therapist finally? Did I go and spend time at church? Did I find a quiet spot to think and regroup?

Um, not exactly.

I signed up for a half marathon.

It seemed like a reasonable idea. I was so angry. So upset. So determined to run. To pound every last cellular yikes out of NF. So angry. Any time I went out to run I muttered "f-you, NF, F-you, NF" as a cadence to keep me going.

Anger is a powerful motivator.

Of course I was also terrified. So I asked Rosie to cheer a lot for me, but really, what was the worst that could happen?

“Well,” she said, “you could collapse. Or there could be a tiny rock on the ground and you don’t see it and you fall down and don’t finish the race.”


So once again we were waiting, waiting to see what would happen…and you know, This time, G was scared. For the first time ever, she asked me if she would die.


She still wanted to celebrate 5 years off chemo. Sigh. Hard to be festive when disaster is lurking.

And then we were back to scan day, August 31, 2011…

Wednesday, August 31, 2011 7:59 AM CDT

quick word:


no chemo now.

I am road kill, but so relieved. This roller coaster is killing me, but we are so grateful and relieved.

Longest day ever (left home at 5:17 a.m, home at 8:20 pm), clinic was insane, drive home was awful, but G is stable. The @^#&(@umors stopped again. They did not shrink, they did not do ANYTHING...and you only treat low grade tumors if they are causing symptoms or growing (since chemo is mostly intended to stop them...G had gallons of chemo and it never shrank ANYTHING). So the good news of STABLE...which is awesome beyond still in the context of holy @^#@That's a pile of tumor in my kid's head.

But tonight, I will sleep and hopefully not dream of oncology, and G will hopefully sleep (she is a train wreck right now, who can blame her?)...we live to fight another day.

I asked our doc how many bullets can we dodge? A lot, she said. So we keep dodging...

thank you all. thank you God, and thank you all for pulling for us. This round has been hard, it's so hard. It means so much to G to know you are in her corner...

Another reprieve. G could start 8th grade, she could just be a kid again for a little while…but this scare knocked us down, badly. And dang, I still had that half marathon to run!

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