Friday, May 24, 2013

Teetering on the Edge...Again

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 24

So we were back to another “6 weeks and scan again” moment.

For the record, I hate that moment.

We officially heard from the tumor board this a.m. (the message got lost in cyber space, our doc sent it last night). We are ok to wait 6 weeks and re-scan, simply because the ventricle isn’t compromised and the other lesion we’ve been watching is a tad smaller. But everyone agreed, there’s growth in them thar hills…


G is aware of what this means. She figured this out about 12 seconds after I posted last. Tuesday was rough, many tears, fears of losing time with friends and getting weak legs again (which hopefully would not be so pronounced. Come hell or high water, we are NOT doing vincristine again). She doesn’t want to talk about it…but occasionally comes to me and tells me she’s worried. I’m trying to be uber mighty for her, and I am formulating a game plan for whatever comes.

This is the one great advantage of the 6 week window. I have TIME TO PLAN. When Genna started treatment in 2004, it was scan-day-drive-to-Philly-the-next-day-surgery-the-day-after-that in such a state of shock…I seriously didn’t eat for about a week. A friend brought me a 3 lb bag of M&Ms, I didn’t open them for nearly 3 weeks (yeah, THAT’s how shell-shocked we were). This time, I have time.

And there is, I suppose, the slightest possibility that the growth will be slow enough that in 6 weeks we’ll gain a bit more time. The docs at CHOP didn’t seem to indicate that was a plausible possibility, but who knows?

I mostly hid from humanity, got my girls ready for camp, tried to get ready for school…I felt like September 7 was the line in the sand, we had to get EVERYTHING set by then.

And talking to people was just too hard.

G was determined to celebrate 4 years off chemo on August 24, so we did, even as the spectre of treatment hung over us. We made a feast, we got through.

mac n' cheese. G's fave.

And then we were up to the 6 year mark.

Six. Years.

I cannot believe we’ve been doing this for 6 years. Half of Genna’s life. Most of her remembered life is this...and sometimes that makes me really, really sad, and

simultaneously really, really mad. Mad at NF, mad at random illness, mad at the case of NF G got (she is in about the 1% of NF cases in terms of brain tumor severity). I hate it all.

But we are so lucky. So very, very lucky. And even though it seems like our luck is running out a bit short term, I have not given up hope on long term happiness for G. I want to set up her dorm room someday, I want to help her pick out a wedding dress, I want to be a grandma (the one with a chocolate stash, of course).

I want so much for her.

Last night we were at the Yankees game, the first inning was REALLY long (hello, 50 minutes? Egads!), and it was quite hot out. I was trying to drum up drama for G, it was a full count, 2 outs, sI said, “G, it’s 3 balls, 2 you feel the drama?”

“No, I just feel sweaty,” she answered.

I want 50 more years of those funny moments.

I want everything and then some for G.

I want next week to not happen.

I want 6 years back.

… The last 6 years are behind us, in a file marked Survivorship. The next 6 days lead to our next chapter.

Please pray for us.

I tried to stock up on food (personal onco lesson: When Nervous About Impending Treatment, I food Hoard), casseroles, pizza doughs, easy to fix things so my family wouldn’t have to depend on neighbors for months’ worth of meals.

The waiting was awful…we felt like we were being sucked toward a precipice…

And then…

Monday, September 6, 2010 7:58 PM CDT


We cannot believe it. We just cannot believe it. We are a little confused, still a little worried (everything is still there, the growth from last time didn't disappear, but NOTHING IS BIGGER, and that was the magic key for watching & waiting more vigilantly --3 month scans again--and no chemo.

I don't even know how to process this, we are so relieved...

More time to find a cure. More time to fight. More time. That is the most precious thing of all.

Genna didn't get it at first, she didn't's like a huge weight is lifted for now...

I will try to write more later, but I wanted to put something here...thank you all for your prayers and support. We just are so amazed, trying to accept the phew of today without thinking about the scan too much, if that makes sense. It's the same awful scan as last time: BUT IT ISN'T WORSE. AND THAT IS WHAT WE NEEDED.

Stability was precarious…but achieved. We couldn’t believe it…

And the next day, Genna started 7th grade.

No comments:

Post a Comment