Thursday, May 30, 2013

Perfect Place to Stop the Show

May 30

In the words of Joseph and the Amazing Technicolor Dreamcoat (hey, I’ve made it an entire MONTH without a Broadway reference)… “this would be a happy ending perfect place to stop the show! (Genna) after all has gone about as far as she can go!”….

Yes. But no.

See, even after 8 years of yikes and such (EIGHT YEARS. I could have a doctorate by now…not just the one I gave myself in Pessimism and Snark Studies), we have to keep going. Miracle Monday ended with Genna getting chemo, and THAT was our miracle.

The changing definition of miracle has been a hallmark of this entire journey.

Genna started high school. She had more neuropsych testing which did reveal that yes, tumor growth does cause more damage to learning and processing (in the words of Homer Simpson, “DOH!”). She continued with chemo, and over time the side effects have gotten a bit challenging…but so far EACH scan since Miracle Monday has shown further reduction in tumor size in that scary section near the foramen of @^#(@% Monro .

 (BT note: the @^#@% added before brain parts is only added by moms and/or dads after years of seeing tumor locations described on radiology reports and having a NEW unheard of locale show up).

We’ve had to hold chemo a few times due to elevated protein levels (back in January, and now since April), a common toxicity associated with Avastin, indicating that G’s kidneys need a break (she feels fine). We have learned that even a teeny tiny scratch bleeds like the dickens if you are on Avastin. We’ve also learned that some of the hidden side effects of Avastin are harder for a teen to deal with…

As a teen back in the tumor battle (not a little girl anymore), G has continued to struggle with school, with terrible anxiety, with sadness sometimes. She does have some FRIENDS this year at school, real friends, a FIRST in all these years. BT/NF kids often have trouble interacting with their peers, and G has certainly experienced this.

At the same time, I have gotten scarier and scarier in dealing with people who won’t step up to help G when she needs it, or who won’t take the time to LEARN what she needs. I struggle these days more and more to find my emotional footing; prolonged survival mode can be very numbing and very demoralizing. I can use certain unprintable words as EVERY part of speech. In the same sentence.

No, really. I can.

Dave, too, has lost a lot of his original optimism and zen. A lot of the time we are mostly alone, the associations we used to have just couldn’t withstand this many years of cosmic smite. I am increasingly grateful for my family, and for the folks in Dave’s family who support us. Those who remain have been with us every step of the way, and we can never thank them enough.

This road is hard. Not to be all “cue the violins! Release the mourning doves!”, but it’s hard. Stupid hard. And there is no end in sight.

NF as manifested in low grade brain tumors is an ultramarathon, not even just a regular marathon. There are mountains and crevasses and raging rivers and at some point you’ll be duck taping your feet to hold them together. NF / low grade brain tumors are like THAT.

Still, G continues to love music, and babies, and our dog Coco. She rocks out sequins and animal print whenever possible.

In 2 days G’s big brother will graduate from high school, a day I had some doubts about. The wreckage firstborn carries from years of this battle causes me more pain some days than G’s stuff, because it is so hard to find support for siblings. Rosie is doing well, she looks out for her big sister, she is STILL stable, thank God, still tiny (her NF thing, she is super small), still as shy as G is outgoing.

We carry on…

I don’t know what our girls’ future holds. I so want to be a grandma, but I understand that that may not be possible. I so want to help Genna pick out a wedding dress someday…heck, I so want to help her pick out a graduation dress in a few years (I already told her she could do sequin animal print if she wants. Really. So…yeah. I’m ok with that). But I know even that is not promised us.

We only have today. As our friend Sandra once said, back in her sickest hours near the end, when she heard someone say we have to live one day at a time , “how can you live more than one day at a time?” …and that is so true. We only have today. I forget this about 8 times a day, but it’s so true.

We have 2 weeks of school left. G can’t do chemo on Monday as planned, she is THRILLED to not miss school. Then we have finals, and that Thursday G has an eyeball check in Philly. Hopefully the following Monday her protein levels will finally be ok to resume Avastin. We can’t really stop…we know what happens when people stop Avastin.

But we only have today.

Tomorrow I will answer the “Now What?” …but we only have today, and today G just came back from a pool party at art, she has a youth group party later…she is freaking out about school so she is listening to a Popple  cd to make herself feel better…

We only have today.

And today isn’t all that bad.

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