Sunday, May 12, 2013

One Year and a Frightful Day to Scan

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 12

We hit the one year mark.

Part of me couldn’t believe it had been a year. I struggled to wrap my brain around how our life had changed, how so many people had been SO kind to us…we had never been on the receiving end of that kind of support, we were completely overwhelmed by the support and kindness of so many people. I wrote a long (surprise!) post reflecting on how many people had helped us, how I had suddenly learned to be assertive to protect my G…and how I would NEVER forget the Just In Case bag again.

The love and kindness we experienced are two of the beautiful things amidst the wasteland of our bt/nf journey, and continue to be so to this day. And I still bring a bag every time we go to CHOP.
G and her goddess doc (and me), September 2005.
 Her doc and I matched that day, which was kind of funny. We still do, rather often. Strange.

Anyway, summer wound down, and over Labor Day we decided to bring G to a priest who had a healing ministry.

I had refused EVERY such thing like this before this date. I knew G believed with all her heart that God would make her better. I figured if He wanted to we didn’t need to visit a limb of a medieval saint or something. It made me angry, it just seemed presumptuous or something; I love a lot of devotional stuff, but this made me mad.

But this priest from New Zealand was coming to our area, and I agreed that we could go see him. Following so close on the heels of our one year smite-aversary, this was a tough call, but G was totally into it (she LOVED praying stuff), so we went.

I still had trouble with God. But Fr. Rea was pretty awesome, so completely humble and normal. He simply prayed with us. A simple, simple, quiet set of words that only we could hear, asking God for healing for G. And while G did not get healed there (understatement of century), MY heart got healed that night. I know that may sound crazy to people, but I stand by it. After that night, for the first time in a year, I knew it wasn’t my fault that G was sick. Or maybe, more accurately, I finally believed that G’s illness was not God’s punishment on me for failing and failing. I knew it wasn’t my fault. The freedom in that moment, a moment which grew in the weeks following Fr. Rea’s visit…it’s hard to describe unless you have felt crushed by cosmic smite.

And G started second grade, replete with new challenges (sigh. I have some blazingly ranting posts about the trials of second grade social life, challenges with teachers, and the perils of the bus --brain tumor and nf school issues can be pretty epic, regardless of tumor type, from what I’ve observed, G isn’t alone in this), and we cruised on. She had been stable since that bad scan in November of 2004, if she was still stable at our Halloween scan, we would stop chemo.

We were all just so tired at this point. Some rounds G did better than others, sometimes she decided She Was Done With Chemo (problematic when you um, aren’t done), we were just tired.

G was growing alarmingly fast, some of that seemed to be tumor related, but her counts were good and she loved telling everyone about her upcoming Make A Wish trip…which we finally got on the calendar for March of 2006. We figured by then G would be feeling better, if in fact we ended chemo in October.
the last temozolomide chart

Sunday, October 16, 2005 9:21 PM CDT

Hi, all.

Round 12 is done.

I never thought I’d say that. We made it through 12 rounds of temozolomide.

Genna was a superstar this round. She gulped the pills so fast some nights I had to do the “God bless Justis, Dakota, James, Ryan, Kyle, Jed, Jordan…” for her (girls were on the other one—so Hadley and Hailey and Caden got prayers, too!). It’s our cutest chart yet (a pumpkin patch with trick-or-treaters), and Genna had no real side effects except CRABBINESS and tiredness— …

So this round is done. Who knows what the future will bring?

Yesterday I got to Andrew’s baseball game, and I could see Dave’s face…the “Oh, no, I’m trying to explain the Story of Genna” face. Apparently Genna was telling all the moms at practice about her Make a Wish trip…and someone asked Dave. Genna had said "Make a Wish came to my house, but I don't know what for." Funny, right? For as talkative as I am online, I don’t chat about this stuff to random everybody. Dave was very relieved when I showed up…and the moms were so sweet about everything. They are really lovely people. The one poor mom (the coach’s wife) was shaking after I gave her details…Genna plays with her little girls each game, our boys were on the same team when I was pregnant with Rosie...I felt bad. I’m used to saying the clinical stuff…but I’m getting weepy now, I don’t know why…

I think my pre-MRI psychosis is beginning…

As a note for brain tumor awareness, all but one of the children in G’s chemo list of prayers have passed away. All. But. One.

There are no words for that.

I felt bad about this post a day later (long school vent included in it), so the next day I related this story…which kind of captures G’s way of the world:

Genna had "writing center" at school (an activity center in the classroom) so she made cards for all of us...well, wrote notes on donated cards. So I got a "thinking of you" card, Andrew & Rosie got festive pictures/blank inside cards...and she wrote Dave a sympathy card. "Earth has no sorrow heaven can not heal" on the outside, "thinking of you at this difficult time" on the inside...and a note from G about how she's sorry work is so hard for Daddy right now. We pretty much fell apart laughing. You know Daddy's job schedule is bad when the 7 year old happily chooses a sympathy card...

And then, on Halloween, we scanned. The day before the scan we brought the kids to the Phillies/CHOP Halloween party, they had a great time meeting the Philly Phanatic and playing silly games, then we sent Andrew home and did scan day on Monday.

Life Lesson: Don’t Scan on Halloween. You have to know that's not going to end well.

Monday, October 31, 2005 8:20 PM CST

Hi, all.

No miracle for us today.

For the record, the tumors are stable. Genna knows the tumors are stable. She is satisfied with this. And growth hormone levels are ok…on the high side of normal, but still normal. She’s not off the charts or anything, so apparently I’m supposed to stop worrying. Genna knows her tumors are stable. This is what she and Andrew know, please remember this if you continue reading.


Don’t you love the “but”? It’s like the scary music in a movie, just before the clueless coed walks through the door of doom. This is sort of the abandon all hope ye who read this warning…well, not all hope, that’s me being melodramatic, but let’s just say when your neuro-oncologist says after talking to the head radiologist that there are some areas of concern, this isn’t reason to sing happy songs.

Simply, some “flecks” show up on the scan that have not appeared before. Is this because the post-shunt-revision ventricles are so much smaller now we can see these previously obscured enhanced areas? Perhaps. Is it a weird NF enhancement thing? Maybe. Is it an area of new (inoperable) growth within the brainstem? Well…

It gave Dr. B pause. Enough said.

So the tumor board will confer about what this may/could mean on Wednesday, and Dr. B will call me. …

Not doing so hot right now, so please forgive me if I hide a bit. I feel a little bit sucker punched…but I knew I wasn’t worried enough this time. I SWEAR, results almost directly conversely correlate to my level of worry.

I did mention to Dr. B that "benign brain tumor" is a complete misnomer. There is NOTHING benign about this except the rate of growth. Which is a big deal, but benign doesn't mean no problemo. Benign doesn't mean we can ignore it. Benign stinks too. Dr. B agreed, kind of sadly.

When Dr. B called, we learned that yes, those spots were new tumor in Genna’s brainstem. And just like that, we were back at square one again.

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