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…

Snap.

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 strikes...do 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

TUESDAY:IT STABILIZED. WE DO NOT HAVE TO RESTART CHEMO. .

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 understand...it'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.

Lily Pads and Murky Water

May 23


One of the things about brain tumor world is that sometimes you get to do really nice things because your kid is smote.

I call these things lily pads…spots to jump on in between the yikes of LIVING with brain tumors, that murky water that threatens to swallow you... these lily pads provide a joy, a respite, a nice thing. Lily pads can also be regular nice things (ie that happen to anybody, not just bt kids). Sometimes I would have a moment, mid-happy-fest, and realize WHY we were getting whatever blessing we were receiving, and I would just have to breathe. And breathe.

We also found ourselves, 5 years into this whole business, really trying to participate more in awareness/fundraising events. We could not do this in the beginning, but by the fall of 2009, we could, and we did.

We attended the Big Apple Circus in October 2009, courtesy of the Children’s Brain Tumor Foundation, a wonderful organization that sponsors a few really spectacular events each year for brain tumor kids and their families.

From Caringbridge:

Before the show, the little girl behind us was talking to her mom. “Mom, since I have a brain tumor…when I get older, will my kids have a brain tumor?” Mom answered fast, emphatically. “No.”

And I had a moment.

Thankfully Genna didn’t ask me…she heard the little girl (and she poked me and said, “oooh  that girl has a brain tumor, too!”…yes, MOST of the kids there did, but ok). But if she did ask me…I couldn’t say no.

I couldn’t say yes, really who knows? But in that moment, I had the ol’ knock upside the head of not being able to say, “No, Genna, your kids would NEVER have a brain tumor. They will be balls of health.”.

I can’t say that.

We need a cure. I know this is a genetic thing, I know there is no quick fix. But somehow, every little loss, every moment seems fresh and raw when it hits.

That there is a big fat nf/bt lesson. Genetics are cruel, my friends, genetics are oh so cruel.

Just a week or so later, we trekked to Philly for the Race for Hope. And there, both of my girls jumped into the survivor photo…I hustled near the front to be able to get pictures.

My girls were front and center (do they ever find any other spot?), and the woman next to me asked the person next to her…”are those 2 little girls sisters? They BOTH have brain tumors? Oh my God…” and the gentleman next to her answered, starting to explain my girls’ story (he must have been a volunteer)…I tried to say “they are mine” (and yes, we had on matching shirts), but I don’t think they heard me…and then their response to our reality got really hard to be by (much aghast sorrow)…and I had That Moment of

OH MY GOD, MY CHILDREN HAVE BRAIN TUMORS.

Yes, Einstein I am not. Yes, I know WHY we were in Philly…I wish I could explain how the parental brain DOES this, but it really is unexplainable unless your brain has done it.

Telling Dave about it later, he agreed, we get used to it. We get used to the story, the yikes, the OMGMCHBT moment. How can you get used to that? It’s so utterly unacceptable…


Which ultimately is WHY we go out at 5:45 a.m. in the rain to Philadelphia to run for a cure. But still..it’s easier to focus on making t-shirts and cookies and getting rain ponchos than on the reality of why we’re doing what we do.

My daughters, both of my daughters, have brain tumors.

And while strangers (but really, just un-met friends in the common cause) were trying to control their emotions about my girls, Genna was making very weird faces (sticking her tongue out and such) and Rosie was being cute and oblivious and taking off her hat for the national anthem, etc. And I was wishing I had not opted for mascara.

I feel bad, thinking about it, those poor people realizing both of these girls have brain tumors. Dang.

And that is how it is, life with NF and brain tumors.

Rosie’s January 2010 scan showed a new area of concern. Now, 3 years later, doctors refer to this area as glioma, but they weren’t sure then. Otherwise, she was still stable enough that no treatment was required. But sigh already. Typing it like this is oh so clinical, so nonchalant. But it was a…ok, can’t type what I want to, a John Stewartism of catastrophe and expletive. But that’s what it was.

In March, 2010 G tried to do her scan unsedated, then she was just too scared, and opted to take a nap. The scan was mostly stable. Meh.

One highlight of this time was Friends of Jaclyn Day at RU Lacrosse…G got to sit on the sideline, and every girl on the team had a shirt that said Genna #1 on the back…I was so verklempt seeing this display of love, G was agog… a lily pad moment…

She still wears her shirt like that all the time.

And in April 2010, I ran with NF Endurance for the first time, at the Jersey Shore Relay.

Ok, I “ran”. I survived. I did NOT keel over dead. I did not throw up at the finish. Winning! (and I only had 4.2 miles to cover). For me, this was a huge conquering of fear, and a first step in taking back some of what I felt NF had taken from me.

I'm the one who looks SUPER FAST.
ok, lies. The lady next to me finished the Boston Marathon this year in 3:40, I think? (thank God she is fast).
Dave runs about 8 minute miles over distance.
I finished the race IN 2009, before the fourth of July. The race was in April . Winning!

Another lily pad.

Rosie made HER first communion…she couldn’t wear G’s dress…for Rosie, NF means she is super tiny, G’s size 12 communion dress was like a 8 man tent on Rosie, we had to go find her a size 6x or 7…but it was a beautiful, hopeful day…another lily pad.



hot enough for sun dresses, fresh snow on the peaks behind us.
 Our minds were Blown.

 We flew out to California and drove to Nevada for my brother’s wedding…aside from the flying part (ooooh snap), it was a glorious adventure, we had never been to that part of the country and it was astounding, amazing, and capped off with getting a wonderful new sister.  Major lily pad moment.


snowball fight, Memorial Day weekend. Them be some MOUNTAINS, those Sierra Nevada.



The next week Dave’s brother got married…then we had a dance recital…then Lake George, our annual vacation…and then scan day for both girls, July 26, 2010.

Rosie was rock solid stable.

G, not so much.

Parts were stable. The optic & brainstem portions are stable. The middle...not so much. Our doc saw us ON TIME (egads!), and spent more than 2 hours with us, going over the films. G told some jokes, did her thing, and then went to watch tv...we were on a different floor, she was ticked to not be by the playroom.

The films are not nice.

We were given the option to wait 6 weeks to make sure things are progressing, and then deal with it. So we will scan again on 9/7. Right before school starts.

Trying to hold it together until my girls go to bed...I think I scared the poor med student by joking about the horrifyingness of everything, but really, it is freaking ridiculous...a DIFFERENT spot I haven't worried about...just not good...

just done for today. Thank you for praying for us. G knows that we have to rescan in 6 weeks. She knows that part of her tumors weren't stable. We told her we will have to figure out what to do if things still look funky. We have NOT specifically said what that could mean. She told me she does not want to do chemo again...asked if she could do oral chemo if she has to restart...but that is as far as we have gone thus far.

…really, really hating on nf right now. really hating.

…thank you so much for your prayers and support, please keep them coming.



Back in the murky water again…

The Figure 5 In Gold

Today we said good-bye to beautiful Caitlin, that spunky bt friend we met in 2008. 
Nothing is worse than a funeral for a child.
Nothing.
Today, we remember and celebrate Caitlin. And for her, and for all our bt friends (and nf friends) lost, we will never stop fighting for a cure.

****************************************************************
May 22


2009

This was our mantra during this time: (borrowed from my friend Alice’s cb page for her bt hero, Lexie):

Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.

-St. Augustine

I generally had a tad more anger than courage, but the quote spoke to me.

In March 2009 we had another Coffeehouse for a Cure, by now it was an annual event. I made a slide show for that, it wasn’t perfect , but it was the best I could put together.

song credit, Sara Groves

G was thrilled, her favorite singer BESIDES Chris Rice was Matthew West, and he donated an autographed guitar for the Coffeehouse…which the winner then gave back to Genna.

We tried to embrace each moment, amidst normal kid sick and all the busy-ness of life. We attended RU Lacrosse games (loved loved loved that), went to Great Wolf Lodge with the kids, tried to just LIVE.

The entries from 2008 and 2009 are also marked by so many losses of brain tumor and NF friends…Hadley and Nora and Erin, so many others. We loved those children, even though we only knew them online, we loved them and deeply grieved their loss.

G had another neuropsych evaluation, a testing of cognitive stuff related to brain tumor injury…it went well, she was mostly stable or even a little improved from her first one. She was utterly wrecked about having to leave 5th grade and go to 6th grade, but we tried to stay on top of her therapy to help her with her anxiety.

That summer, Rosie turned 7; Genna turned 11; Andrew turned 14, and was going into high school.

We had always planned to have more children. Always. But with Genna’s diagnosis and the trauma of the years following (and the level of sick I get while pregnant—hyper-emesis for the better part of 9 months), we knew that possibility really was closed to us. As our baby got older, and G was off chemo longer (albeit plagued with constant issues), this reality made Dave and me both sadder. NF and brain tumors closed this door to us. That summer of 2009, I finally purged all the baby clothes from my attic.

And that is all I will say about that.

For the first and last time, G made it to 6 months between MRIs, but then her summer ’09 MRI was “stable but complicated”, so we went back to 4 month MRIs. Meh. Rosie was rock solid stable. During this time so many of our friends got really bad news…it was just so hard to bear, seeing everyone else in that awful place we knew so well.

G went to Ronald McDonald camp and got her hair cut…10” donated to Locks of Love. Yikes!

Before

After. She was So Pleased

And then it was the 5 year mark. Five years of fighting.

I know for some folks the term “fighting” isn’t their word of choice. For us, it works. This has always been a battle, and the image of fighting gives us a sense of empowerment, of some force in the face of the ultimate yikes.

To mark that date, I turned to William Carlos Williams, my favorite…

The Great Figure -- William Carlos Williams

Among the rain
and lights
I saw the figure 5
in gold
on a red
firetruck
moving
tense
unheeded
to gong clangs
siren howls
and wheels rumbling
through the dark city.

How do you hold 5 years in a few paragraphs?

There really is no good way. I’ve been thinking about this, thinking about the chasm between five years ago and now. Thinking with some dismay about how much I’ve forgotten, how much has slipped away of the 10 years BEFORE this day. Thinking about the ups and downs and the terrifying speed of the whole thing. It’s an uber-cliché, but the whole thing really IS like a roller coaster that never ends…and this week, strangely enough, I’ve been having some insane vertigo issues (just an inner ear problem, apparently), so I actually FEEL like I’m on a roller coaster.

But really, among the rain of the hard times and the lights of the beautiful people we’ve met, the doctors who saved my child again and again, and the wonderful organizations that made my Genna smile…the figure 5 in gold moves…

Five years is a wonderful/terrible milestone.

If Genna’s tumors were gone, we’d say she was at the magic 5 year remission mark. But we know in NF that’s not how things work. With NF, the tumors are still there, quiet now, but the gong clangs and siren howls do rumble somewhere, if only in the darkness of my maternal heart.

With every scan that emergency looms, that firetruck comes tense, if never unheeded! With every weird headache or crazy day, I feel the reality of 5 years of accumulated yikes.

For G, 5 years is a remarkable achievement, and a blessing. She fought hard, and for whatever reason she has made it five years. So many of our friends from the very beginning—friends who also fought so long and hard-- haven’t…

“… wheels rumbling
Through the dark city”…

Hadley…Nora C.…Sandra…Timmy…Emma…Nora U…James…Justis…and more friends, more angels as the years go on…Kyle, Jessica, Dakota, Ryan, Erin, all the names in my little list above times 5.

“the figure 5/in gold”…

We’ve earned this 5 years of Survivorship pin, but it comes inscribed with the names of all of our friends and the children of our bt/nf community who have ended their battle here. That’s a painful inscription, and I would dishonor these kids if I didn’t acknowledge that.

At the same time, I celebrate my Genna, and who she is becoming…from a terrified (and Very Strong Minded) six year old to a vivacious (if still Very Strong Minded) 11 year old…Genna is funny, compassionate, helpful, enthusiastic, and sweet. She makes me crazy about 6 times a day, and makes me better another half dozen times. She sings little songs and hates hiking just as loudly. Genna is curious and diligent, ocd and a worrier, loving to little kids, engaging to adults.

Is she like this Because of the last 5 years, or in spite of them? I don’t think we’ll ever really figure that out. But either way, the figure 5 in gold is hers today.

And for Andrew and Rosie, whose lives were turned over by the last five years…I am sad/glad for them, too…glad for the blessings they’ve shared, sad for the Mom & Dad they sometimes kind of lost in the crazy of the last 5 years. They’ve earned a sibling “5 in gold”, too…just like so many other sibs of kids with catastrophic illness. They are the unsung victim-heroes (not necessarily in that order) of this journey.

Our lives changed forever, in ways far beyond medical, on August 30, 2004. Dave and I are not the same…we are older, obviously, but again, in much more than years. My heart feels like it’s 400 years old sometimes. We are still trying to figure out what we’re supposed to DO about all this, how we are supposed to help good come of this. For every child with a catastrophic illness brings good to those they meet…they are KIDS, not saints, and the inherent dignity and beauty of a child is focused in the struggle for life and death.

We are off to Hersheypark today, a fitting place to mark this moment, even if I have no energy…certainly better than being in our house, the shadows of diagnosis day still lurk in corners on August 30. We will eat chocolate, swim in an over-chlorinated hotel pool, and look for the giant walking Reese’s Peanut Butter cup guy. We will LIVE today, NOT five years ago, even though I know that will require much effort. LIVE Today. Because Today, even if it’s a hard day, is worth celebrating.

We will honor the 5…take a deep breath, and begin the next 5…10…50…

scan day.

And we try to. Dave & Andrew ran again for NF Endurance in Philly that fall…we went to more lacrosse games, I returned to work for the first time in 10 years VERY part time, and we lived. But the shadow was always there.

Slogging On

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 21

CURE NF!

So with 2008 underway, this is how it was at the Casa Camiolo…

Still singing a few too many choruses of NF Sucks to the tune of Jingle Bells, I am telling you it is like the Copa Cabana of Smite Songs…

Uh-oh…just occurred to me…seriously at this very second…sing with me…

Neuro-fibromatosis

Is a crappy little thing,

About which I hate to sing…

You know it’s Neuro-fibromatosis

A disease we can’t predict

Makes me want to go get sick…

I swear to God, Copa Cabana is exactly like a benign brain tumor or nf or both, it HAUNTS YOU!!! And grows, and can take over everything…and you can’t shake it, even if you run and hide it follows you…

How could we have gone this far without me figuring out that neurofibromatosis FITS TO COPA CABANA….?

*********
Semantic note regarding NF: NF is technically a disorder, NOT a disease. Some people get very upset when NF is called a disease. In my rendition of Copa Cabana ala NF, "disorder" didn't scan properly. Also, NF had always hit my child like a disease, so I call it that if I want to. Smite-wise for us? Disease.  But science-wise, it's a disorder. Lesson done.

But then we HAD to keep living. School was busy. The kids were busy. Dave was still working about 87 hours a week. Just like there’s no crying in baseball? There is no “fear break” built into real life, even real life with NF and brain tumors.

I realized G needed to talk to someone local, to find some help for her anxiety and food issues, but I had a terrible time finding anyone who would help us. We scared people away. It was such a frustration, we were too far from CHOP to go THERE for counseling, nobody in our insurance would help us…it was a struggle. I did finally find someone, out of network, which meant $150 a visit. But it helped. So…we made it work.

Life went on. Andrew broke a finger, Dave kept running, we saw David Bailey in concert again,



David Bailey, May 2008



went to Six Flags with tickets Genna won by calling into the radio (while I was in the shower…of course they needed to talk to mom…yikes).

G at Six Flags, being goofy

I substituted at school occasionally and hid all the bread and pretzels in the house up in my bedroom so my poor hypothalamus-challenged child wouldn’t eat them all. Brain tumor note: the hypothalamus is like the brain of the brain, it controls an awful lot of really necessary body functions, and once it’s broken it cannot be fixed. Ever.

I even secretly started running. Just a little. And I hated it. But I felt like if I tried to run, or, more accurately, "run" , maybe I could contribute to this cure business some.




Lake George, 2008


G’s August 2008 scan was stable…but…

I knew. I knew the “but” was there as soon as our doc told G she was stable. I know our doc too well…she has a way of not saying things before she says them, I just know, and she knows I know, and it’s just a pile of ughulous knowing.

There was an area of concern in G’s hypothalamus. We needed to scan again in 6-8 weeks, throw in another spinal scan for good measure, if things looked ANY more concerning we might need to take some action.

And with that, I was back in the abyss.

But until September we just had to wait. G went to camp and had a dazzling time (she literally talked THE ENTIRE RIDE HOME, I’m not sure she stopped to breathe), Andrew went to church camp and came in 3rd in the Olympics there, Rosie oozed cuteness. We passed the 4 year mark. I could have gotten a college degree in the time we had been living with brain tumors.

And on September 15, G’s scan was stable. We had another reprieve.

This uncertainty, this fear of what could come, it is so paralyzing. I understand, while reading through all of this, now nearly 5 years later, why I am such a slug today. It is mind numbing to be in survival mode all the time.

It’s like this:

I’ve realized that scan day, even a Good scan day, rips off my fabulous haute couture Denial Dress and leaves me in reality rags…looking at all the pictures…the pervasive wreckage inside my child’s head…it’s way not cool. I have said to about 5 people this week that it’s really akin to stepping out of your house the day after a hurricane and saying, “phew! We weren’t swept into the sea!”…but then looking around and seeing a boat on your front lawn, a tree on the roof which is now on the neighbor’s yard…a cow wandering by…eek.

The spinal scan is so fabulous I can’t overstate it. Reality doesn’t always bite.

The brain scan…well, it’s stable. Stable is good.

My kid having a brain tumor: not good.

So the not good is as good as it can be, which still doesn’t leave me feeling warm, fuzzy, and woohooish. And seeing Stable means I have to SEE the scans, which I never look at once home unless ABSOLUTELY necessary. Once is enough. It’s not like I forget…

Or, as a friend and I discussed, we can move forward, but not on. The Bag o’Woe is coming with us. But we still get to carry it, and that is ultimately a good thing.

But we got to keep going…the weekend after the scan both Andrew and David ran the Philly ½ Marathon for NF Endurance (Andrew placed second in his age group! Not that many 13 year olds ran, but whatever!). At the finish, we were waiting and cheering for Dave…and then we saw him, bent in half, staggering like a drunken sailor.

Um, no, that is not how Dave finishing a race is supposed to look.

People helped him across the finish, I was running along the fence and screaming at him , then he was lost in the crowd (it’s a huge race, everything is barricaded at the finish), I was panicking, finally I located him in a medical tent, 2 ivs plugged in, he was barely conscious but managed to whisper, “I beat my time from last year!”…

We think it was an electrolyte issue, not a hydration issue, per se, and we know that Dave has to be REALLY careful about this kind of thing when running. Is this an NF issue? Maybe. Dave has always had weird hydration issues, body temp issues. NF is so odd, it could be an NF thing. Is it a scare the crap out of your wife issue? Absolutely. At least we did get to add another hospital to our “Hospitals of Philadelphia Grande Tour” . Ahem.

I didn’t even get to see Andrew finish. Sigh.

But the NF Endurance folks were an awesome support as I tried to figure out what had happened to Dave—and we did raise awareness with the medical folks at the race. Ergh.

School resumed in full force, the fall busy-ness was upon us…

Halloween '08 . Rosie wanted to be a ghost.

In one glorious hooray, Genna got adopted by the Rutgers Women’s Lacrosse Team through the Friends of Jaclyn Program. We went and met the team, G LOVED the idea of this, even if none of us had a clue how lacrosse worked. Coach Laura was so kind and welcoming…joining the team was such a beautiful thing for G… (I know I have a picture, I just can't find it).

And we had another stable scan, and another, although each time the scanxiety almost killed me…

On January 20, 2009, we brought BOTH girls for a scan. This is generally ill-advised, but we did it. This was my plan…

We will leave our house hopefully before 5:30 am…coffee around 6 (yes, that merits scheduling…it also marks G going totally NPO, we’re cutting Rosie off then, too…can you imagine letting Rosie sip juice while G is fasting? Hell hath no fury)…Anyway, hopefully we’ll navigate the South Street detour for the first time around 7 & then check in by 7:30.

Genna scans at 9, Rosie at 10. Rosie’s scan will be longer, there’s some new imaging study for plexiforms, Dr. Fisher’s project? Whatever. Hopefully we’ll have both girls out of their respective scanners by 10ish and 11:30-12 ish , um, respectively.

During the scan I plan to do one or more of the following:

1. Listen to my Ipod, either something LOUD or something Happy, not sure.

2. cross stitch the super easy thing I started so I’d have something for scan day.

3. say a rosary.

4. continue reading Word Freak, a book about competitive Scrabble players that Rita gave me for Christmas. I started it for tomorrow. New things don’t get started on scan day, I’ve learned that.

5. prepare an entry for the Wergle Flomp poetry contest. A contest for Really Bad Parody Poetry? My own personal nirvana…

6. Write the devos I need to get done.

7. stare at the floor.

8. eat honey roasted peanuts secretly, so as not to be a problem for kids in the waiting area who are NPO.

9. stare at the wall.

10. ponder how hard would it really be to memorize letter patterns so I could be a competitive Scrabble player.

11. Call Ronald McDonald House to see if they have room, if they don’t…panic and start calling hotels. Now we remember why we usually avoid this option, the possibility of panic is too great.

12. Jump out of my skin EVERY time someone walks through the door, especially if they are a) a doctor I know or b) have “neurosurgery” embroidered on their coat.

13. probably wish I hadn’t given up chocolate for a month.

Likely I will mostly do 1, 7, 9, 12, and 13 (and make Dave do 11).

And both girls WERE stable, and we lived to fight another day. But oh, the battle was starting to feel LONG.

Not unlike this blog entry. Ahem.

And the battle would only grow longer as time went on.

Two for Two

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 20

On January 17, we took our baby, our 5 year old Rosie, to get an MRI. She was quiet and cooperative, unlike our EXTREMELY talkative and strong-willed Genna. But JUST like Genna, Rosie was a trooper…

Thursday, January 17, 2008 8:05 PM CST

Hi, all.

Well…

I actually asked Dr. B, “how do we say this to everyone?”…and she didn’t really have a good answer, it is what it is, so I’ll go medical for a minute.

Rosie does have small, bilateral optic glioma—like Genna, but only “mildly tortuous” instead of “wicked tortuous” or however they describe it on G’s scan report.. While at this time the chiasm (where the nerves cross; the “magic” Yikes zone for og) is normal size (never seen that before), it does pick up contrast…which means there are tumor cells there.

how beautiful is this child?

Also to our great surprise (and dismay) there is a plexiform neurofibroma located below Rosie’s left ear. This is another type of NF tumor, also generally inoperable. We were totally unprepared for this. Of all the things I worried about, this wasn't on the list! Dang.


As a result, Rosie will have her regular eye check on Feb. 21, then an audiogram to check her hearing (now a concern because of the new tumor) and then a neuro check when she’s not walking like a drunken sailor. If we were homeland security we just moved up to the second highest color on the watch scale (orange? Yellow?).


I should have known, when I had the urge to sing “Go ye heroes! Go to glory! Though you die in combat gory! You will live in song & story! Go—to immortality!” from Pirates of Penzance in the parking garage on the way in (and ok, I did sing it) that we were in for a Day.

I don’t have many good words, as I said to Dave I can hold it together (which I did brilliantly until the last 30 seconds when our friend Brett said howdy, at which point I started crying at the crabby receptionist, who then almost sounded gentle—not often the diagnosis description changes between check in and check out, is it? But I NEVER cry at the hospital) OR ask coherent questions. I was together, not coherent. I am preparing my e-mail o’ dismay for Dr. B.

It is what it is. Now we know.

…We did throw everyone off, coming with the wrong kid…the triage ladies said our name wrong, and then laughed to see who we were, the child life specialist & art lady were a bit “huh?” …it was funny.

I told them they just all missed us, that’s why we had this scan, now we’ll be back regularly.

Oh God…

I feel ill and tired, and really pissed at NF. But I have to see this as Volume Two in The Camiolo Survival Guide…and in that vein I’m going to leave the survivor thing up a few more days…I just need to.

Last night Genna came up to me in her pink footy pjs, her hair all loose for bed…and asked, “Mom, what if someone else in our family gets a brain tumor?”…my poor big girl, up at 5:15 this morning worrying for her little sister.

This world is too much with us…

It was almost too much to bear.

Weird NF thing: NF can create tumors and then just do nothing. About 50% of NF kids with optic glioma have vision loss. We are the textbook example of that (a factoid pointed out more than once when I bring both girls to the CHOP eye doc). But still…in that moment, in early 2008, we were crushed again.

The dark shadow that plagued me had gotten itself a second set of teeth.

Ultimately, Rosie’s hearing was ok, even if the tumor kind of mushed her auditory canal (ie it was uncomfortable to her). Because her vision was perfect, we watched and waited…unlike Genna, Rosie did not have to jump right into treatment. She stayed stable. We started scanning every 6 months for her, and she stayed stable.

But in January 2008, we didn’t know this is how it would be.

I guess I just have to say that despite my sort of shock/denial/deep level of pervasive Yikes, I’m kind of peaceful about this. Honestly, I wasn’t surprised that there was some tumor—disappointed –I did tell Dr. B I don’t ALWAYS like to be right—but not surprised. The plexiform threw us for a loop…

The unknown is scarier, always, has been every step of the way…every time we “master” one part of this, something else magically appears, it’s like we’re in some video game and as soon as we beat one level ZAP! Now there are flying fire breathing pigs falling on us…

Ok, I don’t play many video games! : )

But really, today is only different than Wednesday in that now we know. We aren’t DOING anything right now. Nothing requires doing, we just know that now, in fact, despite our most hopeful hopings, there is a monster under the bed.

Hopefully he will sleep…

We have to do what Dr. B admitted was nearly impossible: see Rosie’s situation (ok, diagnosis, really, don’t EVER underestimate denial as a survival mechanism) without thinking even a speck about Genna’s experiences. Obviously this is practically absurd, but scientifically sound. I think it’s 80% of NF kids with optic glioma don’t require treatment. I did ask Dr. B when she pointed this out if she had met our family, Hi, we’re the Camiolos who NEVER get the good end of a percent…but I know ultimately she’s right.

Rosie’s story may not be Genna’s…

...I don’t know plexiform percentages, they’re such a difficult kind of tumor, I know there’s research being done, Dr. B is doing some of it (she didn’t say that, I had read it when searching for The Magic Cure online)…but that part of the story I can’t imagine. Well, I CAN, and some of the percentages Dr. B mentioned were very scary, but I’m not going there right now.

 
What we told my children, …We are downplaying the potential yikes, because I’m the mom. I’m supposed to deal with potential yikes, kids only should have to worry about the yikes of the moment. And this moment is ok.


Just now we know. She asked if she has to scan again, I told her yes, just like Genna, we’re going to keep an eye on some things…

We’re kind of feeling this out as we go…because honestly, TODAY is ok. TODAY is good, and my baby doesn’t need to know what tomorrow may or may not bring.

…Today is all we have, really…

And after that, we simply had to try and watch, and live our lives. We knew everyone was hurting with us…and the research was scary, plexiform tumors are SCARY.  A plexiform is essentially an infiltrative nerve tumor occurring in about 30% of NF1 patients.  There are no good treatments, they can grow ridiculously (think any Discovery Health show where someone has a 200lb tumor? 9 times out of 10 that’s an NF plexiform tumor), they are rarely completely operable, and they can turn cancerous.

Sigh.

But Rosie was fine, even though her beautiful little head was so full of yikes.

I know that even a small brain tumor is an unimaginable horror to most people. It’s not my favorite thing to ponder, either, it still FEELS like saying someone is a little bit pregnant. I’m just so sorry for all the pain everyone is feeling, I am so sorry…I hate that our friends and family are so wrecked, I’m just so sorry.

….Genna told my mom on Friday morning, over toast, that if the thing we were watching in Rosie got bigger we would take care of it. And if we had to, Mommy could take care of both of them. She was worried, poor G…

Enough rambling. It could be worse. It just isn’t what we hoped, and I think in some ways, ... I realize I have a whole new set of hopes and dreams I get to watch die. Ye Olde Crash & Burn…my poor girls.

Christmas 2007, just before scan day...

Living life while watching that shadow is the great challenge of NF and low grade brain tumors…the thing that makes this an ultramarathon, not a 100 yard dash.

We just had to keep shuffling along.

Losses and Lessons

May 19, 2013


The summer of 2007 dawned bright…to be free of school was a joy, 3rd grade had been a nightmare for G from start to finish. One of G’s teachers(along the resident from our first night at CHOP) are people I have to often pray that I can find the strength to forgive. Even now.

But summer was upon us, the kids finished up their activities, Andrew started summer ball, G spent time hanging out with our NF buddy, Sandra. On June 27 they went to a pottery painting place together; on the way home Sandra and mom Marta started a round of the Silent Game, I guess G’s Wall of Sound qualities finally got to them. Heehee.

Sandra and my kids, May, 2007

And on July 2, Sandra passed away.

My children knew Sandy was sick, but they didn’t know she was THAT sick, because Sandra LIVED every moment she had. If ever a person knew how to seize the day, it was Sandra. We made it through her wake and funeral—Genna read a poem about Sandra in front of a packed church-- and then we tried to figure out how to make sense of what NF can do to people. It’s nonsensical, how horrible NF can be. We missed Sandy so much.

But for Sandra, then and there we resolved to NEVER give up. She never did. How could we?

Sigh.

Life off chemo was still plagued with fear and full of challenges, but there were bright spots: Genna went to oncology camp for the first time, the greatest thing EVER. We had tried to send her to the church camp my son went to, but I had to stay with her, and the social and physical challenges there were just too much. At onco camp, Genna was a healthy kid. Everyone there was comfortable (as much as you can be) with the context of participation, if you know what I mean. THERE, G was not the sickest kid.

And they got my anxiety ridden child to ride a horse! Try a zipline! (ok, she was mad about that) Swim! Boat! Perform in a talent show!

It was like a miracle, the things they got her to do.

By the time fall rolled around, our 3rd anniversary in bt world, we were starting to feel a little more peaceful. G’s teachers spoke to me before school started about how to make the year work for G…things were just better. I finally felt ok only going to the hospital every month or so. Dave started running, seriously running as part of his “get myself healthy” thing, he ran to fundraise for the Children’s Tumor Foundation, which made us all feel like we were doing something tangible to help find a cure for G.

Genna had started asking more questions about her tumors. Now 9 years old, she wanted them GONE. We had to keep trying to explain to her that they couldn’t get gone…they just couldn’t. This made her very sad. That sorrow hurt us so much, but what can you do? We just had to keep trying to embrace each day.

So another year is by us. A year off treatment, a year of normalcy within a context of yikes. A year where I realized about 47 times that a) I lost a lot of my “fuse” in the last 2 years. Stupid things get to me even faster than they used to b) my house was sorely neglected for 2 years c) sometimes the after is harder than you might think.


We sent a card to Dr. B…Genna made a book of poems, jokes, and pictures, and I sent along a letter. Anniversaries are good for saying what needs to be said.


I wish I knew why it makes me so emotional.

The last 3 years are such a mixed bag of sorrow and joy, pain and triumph. I’ve said it a million times, but we have met some of the most wonderful people in the world through this. At the same time, we’ve lost friends, big and little. Every time we lose someone, every single time, even if it’s someone I only know through the internet, a piece of my heart breaks. And this year, with Sandra…well, the magnitude of it all hits me again…the magnitude of that day in August 2004 reverberates through the sorrow of loss.

For that was a day of terrible loss for us. We lost the life we had. We lost dreams and expectations, hopes and plans. The pain of it becomes fresh and raw again on anniversary days. This far in, we have so many days of meaning…well, it explains a lot, doesn’t it?

Yet again, that day opened a door to a world we never knew before. We have learned so much, not only about the biology of brain tumors and the vagaries of NF, but about generosity and kindness. We’ve discovered how many ways people can be enterprising about helping other people…through making cross stitch quilts, writing custom songs for kids, taking professional portraits in the oncology clinic, hosting parties with piles of neon tchotchke, organizing a stuffed animal drive for cancer kids in Africa, setting up a day for kids to see the circus or ride a boat around the Statue of Liberty, mailing cards and pictures to a little girl who stands by the mailbox at the appointed time each day, waiting for the mail truck to come.

If we hadn’t passed through August 30, 2004, we might have gone through our whole life not knowing these things. How much poorer would we have been for not knowing?

It’s a revelation that unveils slowly and painfully…but it is one that has changed who we are as a family.

Certain things are a priority now. Family time is number one. Standing with our friends and those who fight epic battles against tumors and cancer and NF is monstrously important. Dave is running 13 miles Willingly in 2 weeks for Genna, Rosie, Sandra, and all of our NF friends. We will be at Sandy Hook in 5 weeks for Timmy’s Tour de Shore… November 4 we will be running/walking the Race for Hope in Philly…it’s just so important, I wish I could convey how important it is to be at these things, to stand there as a part of something bigger than our family and our struggle, to know that when we stand together we may not beat the monster, but we will defy it in strength and unity.

I never ever thought Dave would be a runner, or we would know A family who lost a child to cancer or to NF. Now I can’t believe how many families we know…


The pain is sometimes almost too much to bear…because in every child that is lost, we see our own, not in the distant fears I used to have as a mom, but in a fear borne of MRI films and research about the missing tumor suppressor gene in my little girl. It’s like realizing you traveled on a plane that crashed in a fireball on its next flight…there but for the grace of God…


The future is a question mark made of whens, not ifs… but statistics have never held true for G, anyway. She has never gone according to the rule book for NF, optic glioma, ports, anything. She believes implicitly in her future full of hope.

…Life does go on, even if we can’t fathom how it can keep moving in the face of our grief and the suffering of a child. And in the same breath we see flashes of joy amid the grief. Those moments seem brighter, somehow, made more luminous by the context of sorrow? We treasure every precious joy.

So we are 3 years in. Genna has to fight so hard on many fronts. We are grateful, endlessly grateful to all of you who are in her corner. And as always, we are so grateful for the privilege of fighting another day.

As the New Year dawned, 2008, I pondered what it meant to be a survivor—this is EPICALLY long, but I think it just says so much of what I am so inadequately trying to express in this blog….


We are survivors.

I sometimes feel guilty saying “we”; after all, it’s Genna who does the hard work of survivorship. But since her battle began so young, she doesn’t fully understand the stakes. That battle we fight for her, the battle of knowing, of knowing too little and too much in the same gasping breath, of searching for answers and begging for ignorance.

We are survivors.

I am unsure, though, how…not so much unsure of the doing—Genna’s scars are a reminder of every painful moment of the method of surviving—but more unsure of our own credentials. Such is the ambiguity of a “benign” tumor. Genna is stable. But the tumors are all still there. The elusive NED, No Evidence of Disease…that will likely never, ever be an acronym we get to make up songs about, which is a shame, I love acronyms & songs and NED is much more fun to sing about than chemo and blood counts.

So Genna IS a survivor. But what does that mean in our world? I know, it probably seems silly, if we’re surviving who cares what it means? However, the last few years have made me think about EVERYTHING. I’ve always been obsessive, but the diagnosis of a brain tumor put my conflicted mind into overdrive.

You see, in the beginning, I felt almost guilty. Genna’s tumor was BENIGN, after all, NOT cancer, not the killing kind of tumor—I know better now. I felt guilty participating in an online support group for Pediatric Brain Tumor families…compared to children with the Bad “Omas”, medulloblastoma, diffuse intrinsic pontine glioma, glioblastoma, anaplastic astrocytoma, PNET, ependymoma, our optic glioma seemed almost like a brain tumor wannabe. How could I be dying a thousand agonies of grief when my child’s tumor grew slowly, without spreading throughout her little body?

Make A Wish? That was for REALLY sick kids, Genna just had a brain tumor. A BENIGN brain tumor. Her hair didn’t ALL fall out, it just thinned. She never lost tons of weight on chemo. Sure, she was having horrible insomnia, random pain, severe vision loss, crippling anxiety and fits of OCD, but she wasn’t dying, so it wasn’t really that bad—right?

Denial should not be underestimated as a survival mechanism.

Conversely, I felt angry when people downplayed our shock and devastation because Genna’s tumors were caused by genetics (i.e. we should have expected tumors!) or because her tumors were Benign. “Oh, so it’s ok?” one mom hopefully asked after Genna told them she had a brain tumor and I explained that it was benign. When I tried to clarify that benign is still a train wreck, I sounded a little Munchausen’s by proxy.

It’s a tightrope, one that I am still learning to walk.

But even when I wobble and waffle, we are survivors.

Back on the very, very first day of all of this, I so hoped for survivorship, for having this whole surreal horror be a memory that we could give inspirational talks about. You know, the kind with beautiful music, glistening eyes, and a triumphant flourish at the end. Kind of like a children’s hospital commercial, a story full of hope and happy endings.

But you know, not all the kids in those commercials make it…there are angels there, little faces to remind us how tenuous and costly survivorship is.

People say we are so strong, they could never do what we had to do. This is a terrible misinterpretation…for I Could Never Do all of this stuff…everyone who knows me knows I am a certified wimp. There is no human being more timid than I was back in 2004. The old Monty Python quote, “Run away! Run away!” wasn’t a punch line for me, it was my guiding philosophy, no joke.

But when catastrophe strikes, it’s not really like you have a choice. We didn’t round up our mighty steeds and say, “AHA! The hour has come at last for us to prove our valor! Arise, and let us go forth and smite the Tumors!” No. We cried. We prayed (or asked others to pray for us, in the beginning I was too mad at God to pray, I would talk to Jesus, but God was off limits). We read books we didn’t understand. I begged someone to just tell us what to do. But ultimately we had to decide; we had to DO. If that’s strong, well, I guess we are. But if so, then maybe I look like Heidi Klum, too…

Sometimes to our own surprise, we are survivors.

I hope we’ve gained some wisdom through all of this. The thing is, we aren’t done. How can we claim survivorship if the work of surviving is an ongoing process? The issues left in the wake of a sleeping tumor are a daily trial. The brain is pricey, exclusive real estate. There just isn’t much room for anything else, let alone a condominium complex worth of errant cells. Our story isn’t complete. We haven’t reached “happily ever after”, and I thought that was the mark of survivorship…making it to “happily ever after”.

I never expected a marathon. I hoped for a cure, I never knew “stable” could substitute for cure.

So now I feel guilty when I don’t feel happy enough about “stable”. I try, I really do. It’s so much better than the alternative…but the scars are so deep now, I know that stable can shift in an instant and we’ll be sliding down into the pit again. I want a cure.

I want survivorship without strings attached.

But Genna is genuinely a survivor. Things she can do now, I truly never thought she’d be able to do after those dark months of 2004-2005…and after the even bleaker months of 2006, when I thought we had crossed out of imitator and into the Real Deal…well, every single thing that G does is a victory, the mark of a survivor.

That’s not to say we have erected a pedestal for her in our home. She drives me berserk, I bug her. We disagree on snacks & when a shirt is officially too small. She needs to constantly talk to me, I need some quiet. She gives me Diva Attitude and I tell her to do things Because I Said So. She is a 9 year old kid who likes books, coloring, and telling jokes. She is a normal kid, and I am a trying to be normal mom.

This is what survivors look like at our house.

When I go back to the hospital now, the emotions of our experience flood over me. Pressing my fingers against the cold glass of the clinic playroom windows four floors above the courtyard, I feel trapped again, like time is passing by while we fight in a parallel universe. I know our battle is on standby, but still…I can hear it, smell it, taste it in this place. It’s not just mental, it’s tangible. The battle LIVES here, it’s not just a story.

I can joke with nurses, make up cheerfully sarcastic commentary—but it only barely drowns out the wailing of my heart.

Still, here, at the hospital, Genna IS a survivor. She is taller than last time; she has new animals for her guessing game with nurse Mindy; she has a full head of curly hair and eyes that never seem to pick up on which kids are the patients, which in oncology isn’t always a difficult visual judgment to make. Absence does make people happy to see her, smiles and hugs await her at every turn. Here, she is the victorious champion returning to the scene of battle…

…even as I prepare my list of questions for the doctor and wonder if that 2nd cup of coffee is going to make me sick if the scan results are bad.

WE are survivors.

So we move on. I try to find the funny parts in our journey, but an awful lot of brain tumor stuff just isn’t funny. Sometimes I can’t talk about it. I get weirdly emotional about old pictures and school assignments and songs on the radio. People get uncomfortable, they cautiously ask how Genna is and brace themselves for the answer…and usually now I can say “she’s doing really well” and not be paddling down the river of my own denial. But if it’s near scan time, or she’s had a hard week with the ongoing issues that come with whomping huge tumor swirling through her brain…well, then, sometimes I tell people how we Really are. I can’t help myself. It’s not fair to them, not fair at all, and I feel bad later, bad that I was so selfish and bad that I have such answers to the simple question, “How is Genna?” Why can’t I just say, “Fabulous!” without it being my stock sarcastic response?

But I know…survivorship isn’t always pretty. It’s hard earned, it’s gritty, it keeps you up at night and throws you to the ground exhausted. It carries you to euphoric heights after crushing you to the lowest pit. Survivors fight for every inch, every molecule of their victory, scarred and battered though they are.

We are those survivors.

Our story isn’t done. But today, in this moment, we cling to all we love…we live, we do laundry and homework and fill prescriptions and leaf though the LL Bean catalog and through medical abstracts that may hold the key to our future…and in doing so…

We survive.


Just before Christmas, I had finally asked Dr. B about Rosie’s headaches. Rosie was 5. Her eyes had always checked out fine, but I asked Dr. B how many times Rosie had to complain of a headache before maybe we scanned.

She scheduled the scan on the spot. January 17, 2008, Rosie would have her first MRI.

And we would, for the second time, be one of those 11 families that find out each day that their child has a brain tumor.

Life After Chemo

I am sorry today is so late.
Yesterday, we lost our CHOP friend Caitlin.
This 9 year old girl brought joy to all who knew her. For Caitlin and our other friends, we will NEVER stop working to find a cure. Please keep Meri, Jim, and little brother Jacob in your prayers.
Fly Free, Sweet Caitlin...

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 18

Life without chemo. Bizarroworld. I had so. Much. Time.

Granted, I had done NOTHING in my house for 2 solid years, so…yeah. I had a lot to fill my time.

And honestly, fear still filled a lot of every day.

G was now in 3rd grade, Andrew in 6th, Rosie was ready to start pre-K. After the hellish summer, I needed some oomph for fall.



first day of school, 2006



It’s sort of like Jaws…you know the shark is still in the water, even when you can’t see it, and yet people are Swimming For Heaven’s Sake, and that sort of dread of large submerged teeth never goes away…like the “da- dum….da-dum…da-dum da-dum da-dum” is playing and playing all the time. I’m so glad for the break, I just don’t remember how to do this kind of living. And I know how fragile a break it is…Genna keeps telling everyone she is getting 2 months off from chemo, I haven’t told her that the break could be longer…she’s had enough disappointment in life, that would be colossal, to think the break was longer and then have to re-start chemo…yikes and a half.



She has said, a few times over the last few weeks, sort of resignedly, “my tumor will never go away.” I point out that really things are pretty good, she’s in school, going to dance, she has friends and fun outside—she agrees with all of that. Still, I know I have to work harder to keep her strong, which is tricky when I’m sort of like a mushy banana most of the time.

Yeah, I did those pigtails. Be impressed.



School was a terrible challenge for Genna. One of her teachers decided that her anxiety was a character issue, and started addressing it as such. We had meetings, we argued about things, I was at the end of my rope…and G just tried so hard, she would cry about the way she was treated, and then try to be loving. Homework took hours…getting her services covered was another new battle…

And my firstborn just was a disaster in school, at least his teacher was so supportive, but concerned, and poor Rosie finally stopped sleeping in our bed every night…

Oncology stuff just takes. So. Much. Time. So much time. It’s the big secret of oncology, it just takes so bloody much time. And then off treatment, dealing with the wreckage of treatment and life with oncological yikes takes so much time.

And time is everything in BT and NF world, remember, you were supposed to make a note of that.

But there were hopeful things, too. Genna’s hair was filling all back in, she had piles of one inch long hair everywhere (one mom at baseball complimented her on her bangs…which were just new hair!). We registered for the first ever Race for Hope Philadelphia, a brain tumor race…and we called ourselves the G-force! …(that is where the G-foRce! was born) , we had signs and a big team and celebrated hope, even as I dragged G in a wagon the 3.1 miles along the road by the Philly Art Museum.

Clinic visits were a joy, just seeing everyone, G told jokes and giggled and showed off whatever new thing she had with her, and all the nurses and registration people and child life folks made her feel like a star. I felt so reassured every time we went…even though we were talking about all the challenges G was facing, all the difficulties in school, the behavior/anxiety challenges, the food issues, everything…I still felt better just being back at CHOP.



and we brought chocolate brains to clinic.
That was just how we rolled.
Note her "bangs", ie new hair.


During this time we also brought ROSIE to get her eyes checked by the neuro-ophthalmologist at CHOP, as well as Dr. B. Based on the train wreck that G’s eyes had been, we figured getting our second NF kid checked at CHOP was a good idea. Onco Lesson: If you show up in clinic with another child for a scheduled appointment, you Really Freak People Out. But Rosie seemed fine.

We ran our first Coffeehouse for a Cure for NF (adapted from our concert of the year before), our NF friend Sandra was really, really ill, but she was determined to perform at our Coffeehouse, and G loved so much to be with her. But we knew that things were really bad. Sandra had sarcomas, and there were really no good treatment options left.

NF is also a horrible, dastardly beast.

As the months passed G’s eyes improved to the point that a)she no longer qualified for any help from the Commission for the Blind (a bittersweet day, she really still NEEDED some help, but one eye was correctable to 20/30. She had no peripheral vision, and needed sharp contrast, but one decent eye means no help—I’m ok with that, really!—when watching the Preakness that year she asked the animals running were horses or cows…yeah, she still needed help) and b) we gave back the Brailler. G was cheating too much, trying to READ the bumps…

Thus marking the ONLY TIME IN THE HISTORY OF THE WORLD that I was happy to hear my child was cheating at something. 

And G had a scan that was stable, (although BRAIN TUMOR NOTE: if a neurosurgeon, YOUR neurosurgeon walks past the MRI waiting area towards the scanners while your child is IN the scanner, you WILL have a full bore linear panic attack, even if he’s not there for you. Lesson learned, Nov. 2006) …I was utterly neuro-oncologically needy, I think I e-mailed our doc 8 times, and learned this:

I am learning that neuro-oncology is a field of “ack! The bridge is burning!” …and that if no bridge is burning, things are considered ok. I just have trouble sometimes seeing around the smoldery spots, or the charred places, or the matchboxes strewn all over the span. (Nov 2006)

3 months later G had another stable scan (that time she told the nurse her name was Sarah when asked. Nice try, GENNA still had to get scanned), and then another in May, and finally, after 3 stable scans, we decided that Genna could get de-ported. She could lose that blasted port. She was thrilled, now fevers would NOT necessitate an instant hospital trip. Woo!

I was happy, too, finally, I actually felt a little peaceful…especially since on our most recent local ER trip I found my assertiveness and told a doctor we were NOT going to be admitted, that was NOT HOW THIS WORKED. Ahem.

For that day, de-portation day, we had a party.

I had been too afraid to celebrate the end of chemo, but in May in 2007 we were finally able to celebrate stability. I got a Costco membership so I could get a magnificent cake. Of course I didn’t order one (I just got the membership and walked to the cake case), so it was a God Bless America cake, which amused me since we were calling this a De-portation Party.

We were living. Stability was a nice place to be, even if the shadow of NF and those lurking brain tumors was always, always with us.