Saturday, May 11, 2013

Stability, Wishes, and a Fail

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 11

With our first stable scan ever, we settled into something of a routine. Once a month for 5 days Genna would take her pills…the chemo got harder as we went along ( chemo has a cumulative effect, over time it hits the system harder. Not necessarily the TUMOR, but the rest of the body starts to feel the effects more profoundly as time progresses). G struggled with the pills, we had elaborate cheers (after a few months Rosie became the cheering squad, her chubby not quite 3 year old self waving her arms and saying “Go, Genna!” until all 5 pills were swallowed each night), we used bribery (a Happy Meal at the end of each round), we created (ok, I created) elaborate sticker charts.

G got through the rest of first grade, we survived it, her eyes seemed to be improving, things were generally ok.

In May we had a SECOND stable scan, and at some point after that Dr. B asked if I had contacted Make a Wish yet.

Um, no.

She looked at me, and I sort of plaintively said, “no, that’s for sick kids”.

To her credit, our doctor did NOT facepalm on the spot. But she told me to call.

This is exhibit 1A in “Denial is NOT just a River In Egypt—Oncostyle”. Meh.

See, NF brain tumors AREN’T cancer, usually (although they can be). And G’s tumors were low grade, and low grade means not as bad, right? So she was on chemo #2, so she had vision loss, so we had created a network of school support, so she had no energy, she wasn’t as sick as a Make a Wish kid.


I broached the idea of a wish to G, she told me she would like a Care Bear. Since at that point we had 57 Care Bears in the house, I told her to think bigger. I got her a dvd to show her what Disney World was (Dr. B suggested we show her something that would be good for all 3 kids, since G was thinking stuffed animal and our other kids were having such a hard time, too). After a week or so of watching that, etc., Genna came to Announce Her Wish to me.

“I want to go to Disney World!” she said.                                         
strategic sticker chart design


“On a train!”

What? I explained I didn’t know if Make a Wish would DO that, taking a train to Florida from NJ was expensive and long and yikes. Apparently Genna was petrified of flying, which I didn’t know (and I swear she had NEVER heard me be phobic, since I am a Big Fan of Terra Firma).

“Well,” she said, very seriously, after thinking a moment, “then I guess we could go to Philly instead.”

I told her I would ask the MAW people about the train. Ahem.

G’s 7th birthday was a joy, birthdays are very meaningful when you spend a lot of time in an oncology ward, and we have a chemo chart celebrating the occasion.

 Just a few weeks after G’s birthday, almost exactly a year after the fateful eye check, we had another scan, and things were stable AGAIN! The ventricles were a little enlarged, but after some checking folks decided G was ok.


In the days following the scan, G complained a few times of having a headache. To clarify, this meant she mentioned “hey, I think my head hurts!” on 3 occasions, and then 10 minutes later would say, “hey! My head doesn’t hurt anymore!” It was not super dramatic.

Except that G NEVER had headaches. Ever. Not before diagnosis, not with tumor growth, never.

So, being a dutiful and scrupulous mother, and being really petrified of missing something catastrophic again, I mentioned the headaches to Dr. B at our visit the week after the scan.


After a few phone calls, some poking and prodding, and a singularly unpleasant test that involved putting a giant (I mean GIANT) needle in G’s head (during which she screamed and cried for Daddy, who was at work), we were met with a solemn row of Dr. B, neurosurgery resident, and nurse Mindy filing into our room where we waited.

Solemn row of multiple medical people is NEVER GOOD.

G had shunt failure.

We both kind of lost it, we weren’t allowed to go home, G had to have surgery the next morning (it was late in the day at this point, and while shunt failure can be life threatening, G’s was caught early. Yay me, sigh) …but just having to stay unexpectedly was so demoralizing, and for the first (and last) time I didn’t have a Just In Case bag with me…and the hospital was FREEZING, it was August and the ac was cranked up so the clinic was about 40 degrees.

G was crying, I was crying (breaking my "do not cry at CHOP rule"), Mindy made G a card, the child life specialist gave G a stuffed dog (stuffed animal #4279), we just huddled miserably in a corner until a space in the PICU would be ready.

Those unexpected having to stays are brutal on everyone in the family. THOSE are the times G remembers from these early days.

Several hours later Dave arrived with supplies, G had surgery the next day (it wasn’t nearly as bad as the first shunt surgery), and we got home just in time for our first magical MAW meeting.

I felt a little bad, G was a WRECK at the meeting with the wish granters (can I blame her, one day after shunt surgery?) and Rosie was in rare cuteness form, the ladies were smitten with my baby…but they told G that she was going to go to Disney on a train.

Never, ever underestimate the power of something to look forward to. We would need that and more in the months to come…

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