Living and the Sunshine (ala Camp)

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 25

Today my Rosebud is 11.

In the midst of stable, challenges continued. School was a CONSTANT source of stress for G. My son was generally imploding… the sibling wreckage of brain tumor/nf diagnosis is a gift that keeps on giving. And after 4 years you age out of Super Sibs, the awesome sibling support organization for onco sibs. They aren’t made for 6 and 7 and 8 years of battling…. Rosie was mostly fine, but she had some plaguing stomach pain issues (which necessitated a bunch of doc appointments) and her ear bothered her at odd moments and I had to have several annoying conversations with her orthodontist about the realities of orthodontia and brain scans (BT note: MRI picks up metal in mouth as artifact on a scan, it blurs the images, so kids with braces have to generally get them OFF before scans. Took me a few conversations to get the orthodontist to understand that only one of us was the expert on brain tumors in my kid. Not pretty). My workload increased, which was a good thing but also a challenge.

Scans following the Scare of Summer 2010 continued to be complicated but stable. Scan reports used words like “infiltration” and “slowly grown”. We knew the writing was on the wall, but that is so hard to explain. Genna SEEMED so good, you know? A lot of people in our family stopped following the caringbridge page, it just got to be too much, I was told I was too depressing.

Living with the elephant in the living room was becoming untenable.

So finally, after much fear and trembling, I signed our family up for a family brain tumor camp, Camp Sunshine. I was so excited and SO nervous to finally meet some of the families I had known virtually for 6+ years. We needed to find some place where our daily yikes made sense.

And we got accepted! Over President’s Day weekend, we hit Camp Sunshine for the first time…

(I need to) try to express in words what Camp Sunshine was like.

Let’s put it this way:1. Some of my children would rather go back there than go to LAKE GEORGE. Seriously.

2. One of my children said, “I wish people in NJ were like my friends at Camp, they were just so nice”. (not one of my female children--!!!!!!!!!!!!).

3. That same child was seen smiling, laughing, and participating in goofy camp stuff. (!!!!!!)

4. We got to be in a room with 40 families who speak our same terrifying dialect of smote.

5. Better yet, we laughed and laughed with those families.

6. I got to finally meet some people who literally have carried me in some of our darkest times over the last 6.5 years.

7. Genna instantly endeared herself to all of the 2-4 year olds present.

8. Rosie skied down a mountain. Dave & I snowshoed on a lake. Egads! Adventures!

9. I got to prove the existence of Dave to people I only have ever spoken to online.; )

10. I DID NOT WORRY ABOUT SCHOOL OR COFFEEHOUSE WHILE THERE. NOT ONCE.

11. We met at least one other child with some of the identical food issues G has. I am not just a food psycho to G. This hypothalamus crap is for real, if you’ll pardon my use of the vernacular.

12. We met tons of amazing new friends.

13. Camp Sunshine felt like Give Kids the World (where we stayed on G’s Make a Wish trip)…sans palm trees and plus lots of snow. The feeling of love was the same.

The whole place was just LOVE.

eyeballs. Note the Yankees Ensembles.ahem.

Major lily pads!!! Camp gave us the oomph we needed for life, for the Coffeehouse that was around the corner, for our next race, for everything. Camp Sunshine IS the Best Medicine For a Family, EVER.

G also had a scan around the corner…and it was stable, with one area a speck SMALLER! We had never seen that word before, even if it was microscopic, there was a portion of tumor that seemed smaller. Woo!

We were living.

Rosie has taken to spelling out neurofibromatosis and plexiform neurofibroma and optic glioma (hers doesn’t involve the chiasm or hypothalamus), she carried the words on little post-its into her 3rd grade class to add to the spelling bee. She owns those words now, without the fear that I have when I hear them. She doesn’t know the fear yet, and NF is all she’s ever known.

By this time a lot of our support system had moved away or was planning to move away. This was so hard for G, and for us, too…you don’t realize how hermit-making perpetual oncology precipice can be. Meh.

In the spring I got the official confirmation, both girls would scan in July, right after G’s 13th birthday. This was in the back of my mind as I trained for the NFE relay down the shore, signed up for Camp Sunshine for the summer (we got in! woo!), tried to get my firstborn out of an academic abyss he had flung himself into, met with teachers at G’s school about ongoing issues…endless…

Our real struggle was with a medication switch for G, she had outgrown her original “peaceful” medicine, and our first attempt at a switch was an unmitigated disaster.

Genna’s medication switch has become more challenging. Without going into tons of details, let me just say I hate brain tumors with every fiber of my depressed being and I hate people who say that serious brain issues can just be fixed with happy thoughts and a turnip. I hate that brain tumors can so deeply mess with who you are. My poor G is so unhappy, just miserably anxious and unhappy. We are continuing to fiddle with the dose, and hopefully as I begin phase 3 of New Med this week we will start to see a happier Genna again.

She used to be so happy. So freaking happy.

Did I mention my thoughts about brain tumors and nf and those things that rob my child of her childhood? I did? Oh, phew.

Anyway, please pray for my Genna. I hate hate hate the way things are here right now for her. I so want her to enjoy life.

I had no idea then how much harder things were about to become.

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.

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.

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.

Onward and Upward



Flashes of Hope, June 2006

May 17.


Today happens to be World NF Day. Now you know, do with that what you will.

So we had our miracle reprieve; G’s progression was a weird, non-tumor, NF thing. We got to restart chemotherapy, go on G’s Make a Wish trip, and try to gut through the rest of school.

And we were so happy and grateful…and weary and run down and still vaguely terrified. By this point we couldn’t even see straight, so many odd/scary/medically challenging things had happened. We were ecstactic road kill most of the time.

This is par for the course with brain tumors AND NF. You just never know what’s going to hit next.

And a few weeks after G’s Make a Wish, our CHOP friend Timmy passed away. We were heartbroken. I still think of Timmy every time we have a brilliantly blue sky day…he had such beautiful blue eyes.

Brain tumors are horrible, dastardly beasts.

But we did have some joys to get ready for: a concert with Genna’s favorite singer, Chris Rice (she has 3 favorites now: Chris Rice, Matthew West, and Scotty McCreery, when she met Scotty this past Sunday she told me that NOW her life is complete, she has met all 3), and G’s first communion.

You don't get the sense of it here, because he was all hunched over, but Chris Rice is REALLY tall.
G was thrilled. He seemed super nervous.
Dang, I liked that purse.

In the very early days of our time at CHOP, there was a bulletin board in triage, covered with onco kid pictures…a board that fell victim to HIPPA stuff eventually, which is sad. Every week I would look at this one first communion picture of a little girl, bald head, hands folded…it was so beautiful, and to reach that moment with G kind of meant something huge to me.

After MAW we did G’s next round of chemo, and realized rather suddenly that the weird sunburn from Make a Wish was NOT sunburn at all…it reappeared with a vengeance after this round…burns that turned into blisters running up G’s hands and arms, on her feet and legs, and all over her little ears. It was horrible. At least I didn’t have any more guilt about inadequately sunblocking her…this was a full blown allergic reaction to the procarbazine, the P of the TPCV.

Our chemo cheer was never the same after that. TCV just does NOT have the same ring.



Genna and her cousins Aiden & Kevin (Aiden also made his first communion)...
if you look closely, you can see the marks from the blisters.
G picked them all off. Sorry. During first communion practice. Ew.
But she is still so cute.

best picture of G's personality ever.

But G made her first communion, albeit with blistered arms, and I checked off another milestone that I wasn’t always sure we’d reach. The day was perfect in every way.

Onco Secret #427 : You buy an obscene number of portraits. Sigh.
Our favorite is the one where she is like "CHECK OUT MY FABULOUS DRESS!"


 

The months following our miracle scan were very difficult, which seems impossible, but with the allergic reaction came a continued whomping of Genna’s blood counts, or the time we now refer to as “Transfusionfest 2006”. Between blood counts at our pediatrician and unplanned trips to Philly for blood or platelets, we were completely wiped out. 23 or 24 times G needed transfusions during that period, every time meant a long day at CHOP, finding child care for my other kids, packing up stuff for G to do. G panicked every time we went to CHOP, her anxiety was at an all time high, she was petrified of having to sleep over. The one time we went to CHOP and found out after we got there that the blood bank WAS OUT OF THE RIGHT KIND OF PLATELETS, we couldn’t even stay in Philly (the nurse practitioner offered to call Ronald McDonald House), G was so upset at the idea of staying that I had to drive the 2+ hours home and then drive back the next day.

I have a continuing, undying gratitude for people who donate blood. I used to...and then the last time I went they couldn't get enough out (not lying). The nice tech said, "well, maybe we could use this for a child" (if I only knew then that MY child would need this some day!)...the other tech said, "or a really short person".

Ahem.

In May G spiked a fever, we went to the local ER (at this point they knew us there; Life Lesson: when the local ER docs recognize you and remember what games your kid likes to play, AND don’t try to tell you that they “know how to access a port” (which is code for “I learned it in nursing school but haven’t done it in 7 years but hey, how hard can it be?”—followed by child screaming “AT CHOP THEY KNOW HOW TO DO THESE KINDS OF THINGS!”) you know you are going to the ER too often), G’s counts on this day were nowhere, and we had to get ambulance transport to CHOP (I was NOT going to stay days and days at a hospital where I have to spell things). That 4 a.m. ride to CHOP, listening to jazz over the ambulance radio while shivering in the early morning chill (we had the windows open to try and bring G’s fever down)…so surreal.

You know, that was 7 years ago today, that ride. Hm.

We were stuck a week at CHOP that time. For an ear infection. Even regular infections can mean serious business for a kid who has no immune system.

Our doctor decreased G’s dose of the T, C, and V, but still, her counts were consistently in the toilet.

Lesson Of Blood Stuff: Hemoglobin below 8 = yikes. Platelets below 50 = not so hot (some hospitals go lower; generally when G transfused she was in the 10-20 range). Weird Onco Note: Platelets look like concentrated chicken noodle soup without the noodles. They also only have to be the same Rh factor, not the same blood TYPE, apparently, which gave me a heart attack the first time I saw G getting platelets that did not match her O negative blood type.

it became kind of a joke, EVERY time we saw the Flashes of Hope people at CHOP Genna ended up needing platelets.
Thank God I haven't seen them in a while.

We were so worn down, G kept spiking fevers, or needed blood, or the other kids got sick. I was just wrung out. By mid June I figured out that in one stretch of 11 weekdays we had spent 6 days at hospitals and 2 interrupted by local doc visits (for counts). It was so hard. Reading the old CB stuff is so hard.

I so wish people KNEW, or understood this world we inhabit...this is so very tiring and lonely, sometimes. Just trying to make lunches when you're out of bread because you've been at the hospital all week...finding somewhere for the 10 year old to go play...finding dollars for parking...packing the just in case bag...day after day, it's like Verdun...sustaining losses but never getting anywhere...trench warfare of sorts. –June 21, 2006

I did realize on the way to Philly today that you can sing, to the tune of Shenandoah, “Oh Philadelphia…I long to shun you…and to stay—back in New Jersey” etc. Dave loves when I do that. (He really enjoyed our hit from Friday, “We’re—coming down, so let’s get that platelet party started!”). July 3, 2006

G was tired, and sick, and having major OCD / food issues, courtesy of her mushed hypothalamus. She didn’t have an “off” switch for food, and she would go get WHATEVER food she craved…sticks of butter…packages of cheese…it was awful because THIS was the day to day manifestation of brain tumors at our house. It sounds dumb, but the food issues were so all –encompassing at home, they caused incredible stress for all.

Did I mention that brain tumors are horrible, dastardly beasts?

Anyway, On August 24, 2006, Genna had a scan, it was stable again (huge relief), and our doctor sat us down…

In fact (prepare to be amazed)…Dr. B thinks we should strongly consider stopping chemo now, instead of doing 2 more rounds. This kind of blew us away…still pondering that. I can’t imagine having no excuse for my unfinished laundry…

Seriously, I can’t imagine NOT treating these things…but they’ve been stable a while, and G’s bone marrow can only sustain so much injury before damage becomes permanent and we inadvertently cut off future lines of chemotherapy OR create disastrous secondary disease.

Our next appointment is really in a whole month? Yikes…

Say what, Willis?

G’s bone marrow needed a break.

It is so surreal, stopping treatment when there was still tumor kind of everywhere. Of course there is relief, but for us, the relief was almost superseded by terror. I would only be at CHOP ONE TIME A MONTH?? (for port flush?) The tumors would be left all to their own nefarious devices?? After the 2 years we had had , I could not fathom this ending well.

But Genna was so happy. She had started getting scanxiety (alas), and she was so happy things were stable and she could STOP.

The hospital was my safety net. Not being there a LOT gave ME separation anxiety, really, which sounds ludicrous, but it’s true. At the hospital, everyone spoke our language, everyone understood our reality. We felt so safe there.

But now we were on our own.