Thursday, May 9, 2013

Three out of Ten

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.

Today's side request: please send every good thought /prayer/vibe of strength to our friend Caitlin, who got the worst news possible today on her MRI. Caitlin was at onco camp with my girls last year, and visited G in the day hospital about 4 weeks ago. Our hearts are broken again today because of brain tumors.

May 9

It was almost MRI day, and G was losing vision.

On Caringbridge I said it this way:

I'm really too upset to say much right now other than please pray. We're trying to figure out what to do with this--we don't see the neuro-opth. (see, I couldn’t spell it then, either) until Nov. 29, but now I'm really worried about what the MRI is going to show. I'm worried that I've been letting Genna cross the street alone--she's so careful about looking both ways, but I'm not sure that "looking" is particularly useful. Getting on the bus each morning for school has become a challenge, as she frantically looks for a seat while the bigger kids won't budge (we asked the neighbors today to help us with that, so Genna can get on the bus first).

Genna was very pleased that she saw the first 2 lines on the nurse's eye test (which is exactly what alarmed the nurse!). She is so pale, and tired, and frustrated with school--maybe because she can't see? We had no idea it was so bad.

please pray for us. this is almost as bad as the initial diagnosis for me.

It was a hard time, reading through those early caringbridge entries is so weird.

Right after this day, we finally met another kid with NF, a teen in our church who we had been praying for but never met. Sandra was battling sarcoma, a very rare NF manifestation. G was very pleased to meet a new friend.

Scan day loomed, the Monday after Thanksgiving (where G mooched Grandma into making her pizza, G didn’t LIKE turkey), I was so scared and praying that things would be ok, but G’s deteriorating vision scared me so badly, despite our doc telling us that didn’t necessarily mean the tumor was worse.

We headed to Philly on the 29th, got G’s scan, and headed home. Nobody called that day, so I figured maybe we weren’t smote. I didn’t start calling our doctor until the next morning, and it took me all day to get through (the nurse was NOT AMUSED that I kept calling, and I was so non-assertive then,I just apologized and carried the phone with me the rest of the day). Finally Dr. B called me.

The chemo had failed.

 The tumor had grown larger.

All I could whisper was, “of course it did. Of course it did.” We were the 3 out of 10 that carb/vin doesn't work for. We had come to THAT bridge.

Not only had the tumor not shrunk or stabilized, it had grown. And a teeny speck of potential tumor spotted on the original scan was now a centimeter sized blob in G’s cerebellum.

I just remember crying with my mother, crying and crying, how could it not work? Those months of G feeling miserable were all wasted…

This was all I could say

Tuesday, November 30, 2004 2:53 PM CST

Hi everybody.

It's not working. The chemo is not working. The tumor is growing, making its inexorable progress through my little girl.

I don't really know what to say. Right now I have more questions than answers. Next Monday I will meet with the doctor to discuss what chemo we are switching to. There are a few options, but the risk of secondary leukemia is higher....but radiation and surgery are really not options.

Genna's only question was "will it hurt?" when told she would need new medicine. I told her no. She was fine then, matter of fact about it.

Please pray for us extra today. Please don't take it personally if I don't answer e-mails or calls.

Thank you,

And then, while I hid from humanity, we had to figure out what to do.

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