Taking Back the Day

I had a radical idea yesterday morning, during one of the 57 drives I do each week.

I can take back April 5. 

Take. It. Back.

In our family story, April 5 stands as one of the Quadrangle of Worst Days Ever that we had (right up there with Diagnosis Day and Possible Malignant Transformation Day, nearly tied with Progression After 5 Years Off Treatment Day…). The day haunts me.  And Facebook keeps helpfully reminding me of how nervous we were before April 5, 2012,  how desperately sort of hopeful we were, even though we knew G didn’t seem to be doing well.

5 years ago, April 5’s MRI obliterated our hope.

I know. That’s a long time ago.

Here is the problem: I am a History teacher. Remembering the past is my JOB. Literally I get dollars to dissect the past with nearly 70 students each day.  The great irony of what prolonged stress does to memory is not lost on me.  Thank God for Post-It notes. But the varied dates of medical smite that fill a decade and more of our family history—I can’t shake those memories, and trying to understand them, trying to gain some kind of perspective is the only way I know HOW to manage them.

Or denial/avoidance, but that is another story.

Our neuro-oncologist used to routinely ask me to “tell our story” to new medical students, knowing that it was my weird party trick, being able to recite a litany of dates/chemo fails/statistically improbable complications/more dates/random sarcastic jokes/things that only happened to our G/dates and dates. I can’t remember what I did yesterday, but the medical yikes—I remember.

So my drive time idea was pretty radical.

Take back the day.

Some days can’t be taken back. Diagnosis day is always going to be tough, it’s the center of our personal timeline of Before Tumors and After Tumors (we are now in the Year After Tumors 12.5). We remember it as a survivorversary, but it’s still a tough one to navigate each year. Progression Day is also tough. Restarting EVERYTHING with a teen who could understand things much more than a 6 year old could was brutal—especially since I had to be the one to tell her that we had to start up chemo again, after brain surgery the next day. I am not sure I know how to reframe that memory of the moment with my child in a waiting room.

But April 5—I can take that day back.

Because yes—it was horrible. It was a dark, miserable, son of an unprintable punctuation marks in a row kind of day. It was a day ONLY describable in 4 letter words that need to be spat out. BUT…

Today it doesn’t matter.

Unless docs talk about that trial in what seems to me to be a cavalier manner (*cough, which never, ever ends well), it doesn’t matter to our family.

Because 5 years later, G’s tumors look better than they have in years. Not that tumors really ever look good (“spring ’17, the tumors are wearing a subdued palette of less enhancement and maybe even slightly less mass effect! Stunning Detail!”)—but the horror of that day IS a memory. The next chemo shrunk that horrible, catastrophic growth. Nothing has been easy since then—G’s school challenges and ruptured appendix and whooping cough fest were all AFTER this day—but WE ARE STILL IN THE GAME.

And that merits taking back the day.

I am not exactly sure how to do it. Wednesday is our “nobody home for dinner” day, and somehow in my mind taking back a day always involves food. But even if I just try to remind myself all the day, Hey, WE ARE STILL IN THE GAME. G IS DOING GREAT. CADBURY IS IN THE CLOSET. WE HAVE A DOG. IT’S SPRING. I JUST GOT A SWEATSHIRT WITH HAPPY BIRDS ON IT. Pretty much anything to stay in the moment of today…

I consider that a win.

So we’ll see how it goes, this radical experiment of mine. Can I NOT wallow? Will I eat my 3^rd bag of Cadbury? Does anyone else in my family even remember the day? Does that even matter?

But come hell or high water, I am going to try to take back April 5, to have it just be a springy day of promise and potential. And Cadbury, likely.

Taking back the day.

Let’s do it.

*****************

So I wrote this last night.

I woke up this morning. Birds are singing. Dog pooped right away (without needing to sniffle every blade of grass on our street).  I only had to yell at 3^rd born three times to get her out the door for school.

And you know what I realized? I am the only one here bound by that day. Nobody else in the house remembers. And as I walked the dog, and felt some of the old erghleyugh rising up, I looked at the trees, the birds, the spring flowers starting to bloom, and I know that old April 5 is just that. Old.

And FB reminded me this morning…yes, that day was awful. BUT—the rememberings are all posts by our friends and family who were hurting FOR us, praying for us, rallying hope and good will in our direction—usually marked with pictures of my smiling warrior.  THAT is what today needs to be about. I know those folks will likely all get reminded about this today too—

hey everyone. this is Kristin's sister Laura posting this for her: G's scan was not good... Thank you everyone for praying. We are going to Plan B and G is actually taking it remarkably well...we are trying to be super positive for her.

Thank you, friends and family.  We love you all so much.

Today I WILL let myself off my Lenten car silence thing –there will be music. I will eat Cadbury. I will take this day back as the day our friends and family stood with us and held us up when we were falling.

We’ve had 5 April 5ths since that bad one. I claim those as a win.

NOW let’s break out some Cadbury and some Safety Dance and get this day going.

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.

NF Management 101 , or, Hey, Maybe things WILL be Alright.

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 3


After the shock of realizing G had NF, I started to search the internet. We only had dial up then, and a big clunky computer, but I managed to find the Children’s Tumor Foundation website and a bulletin board of parents of NF kids. I bleated out my pitiful tale of new diagnosis, and a mom reached out to me, talked me off the ledge, gave me hope. I am forever grateful to momma Beth for those e-mails, those words of encouragement. Her daughter was on chemo for brain tumors (ooooh yikes), but she seemed to be doing ok. I tried to wrap my brain around what NF would be for G. . . but it was too scary.

Bizarrely, (in retrospect) I was mostly scared about cosmetic stuff for G, the bumps that can come with NF (ie fibromas, small tumors on the skin). I knew kids had been HORRIBLE to Dave when he was a young teen, all because of his bumps…I knew that I might venture into uncharted levels of fierce of anyone messed with G. Well, maybe not “might venture”. I had always felt hideous as a teen, NF could not make my beautiful girl feel like that.

(and this was before we knew about TLC and programs such as "My 200 lb tumor", which generally is about NF patients. sigh).

Our pediatrician wasn’t super concerned, he did suggest that we see a neurologist and eventually get a baseline MRI for Genna, and that as soon as she was old enough we should start getting her eyes checked every year by a pediatric ophthalmologist. (ophthalmologist is quite possibly one of the hardest words to spell Ever. It took me twice to get it right here, which annoys me.)

We only told a few close friends and family. . .and then we tried to go on with life. Genna was a roly poly ball of fun and attitude, her big brother was a strong willed but curious and energetic kid, we had our hands full WITHOUT worrying about NF.

And really, things were ok.

At 14 months old we did get G that MRI, it was a nightmare trying to sedate her, she had to drink this awful purple sedative (maybe versed?) and she kept fighting the sedation, staggering around like a drunk sailor (we kept trying to hold her, but she kept fighting to walk around). The tech told us, “she is a feisty one!”. Yes. Yes she is. I sat in the waiting room and wrote melodramatic poetry about my baby girl. Like with references to “khaki clad doctors munching chips” (they were) and “tigress claws protrude”. Good stuff. Don’t know WHY I’m not poet laureate yet.

To our great relief, the MRI came back clear. The report noted that G had some UBOs (Unidentified Bright Objects. I’m not kidding. That’s what science came up with to identify these marks in the brains of NF patients. Seriously. The coffeemaker in the lab must have been broken that day or something). Otherwise, her brain was healthy. No sign of tumors.

I was so relieved, I had prayed and prayed particularly to a certain saint (it’s a Catholic thing; we figure folks who are in heaven have time and a mission to pray for those of us still down here. It’s kind of this cosmic solidarity thing that I frankly really appreciate about being Catholic). ..this answer to prayer seemed a direct result of those novenas I had prayed and prayed. St. Teresia Benedicta of the Cross was my NF optic glioma go-to saint…because that is what the MRI was looking for, the optic nerve tumors that list references, and we had scanned on Yom Kippur, which had relevance to St. TBotC. I figured that was a Sign from God. (I say it with capitals, that’s just how it comes out, I was so relieved).

(as a weird side note, optic glioma as a diagnostic criteria was only recently added to the list, based on research. Yay, science. Woo. Glad to help with that.)

Genna’s eye checks each August were also fine. A nightmare (if your kid has had to go to an eye doctor as a preschooler you know what I’m talking about), but the doc was good and G’s vision was perfect. Phew!

Eventually I even stopped being on the CTF board so much, the stories of families in really dire NF predicaments were freaking me out. Our life was full.

When G was 3, we decided I could try to get through another pregnancy, and we found out we were expecting just after the attack on the World Trade Center. 9/11 was intensely painful where we live (NJ), and after that I just had this horrible feeling of impending doom (great thing when you are trying to have another baby, right?) . I just felt like other bad things were coming. No joke, I knew something terrible was going to happen again. Sigh. (cue menacing music).

Just after Christmas, Dave’s grandmother became very ill. After a lot of confusion, doctors finally diagnosed her with a malignant brain tumor. Grandma was past 80 years old, she decided not to endure harsh treatments that would do little to extend her life, and within 2 months of diagnosis she passed away.

This was our first, horribly painful moment of personal brain tumor awareness.

Our grief over losing Grandma was somewhat assuaged by our Rosie’s birth in May of 2002. Rosie was peachy and fair, the opposite of Genna, and she was also round and healthy and perfect. Yup, smitten again!



I was in a hurry, and having a ptsd fest over looking at old pictures, so I just picked this one.
She looks like Andrew, right?


Aside from grief and that feeling of doom, things were good. Firstborn was in second grade, G was going to start preschool, we had a beautiful baby. . .

Genna was way into the baby thing, she would set her dolls up right by Rosie.

I miss those days. I hardly remember them, even writing this I have to think hard to remember what life was like then. We camped, we hiked, (Genna hated both activities even then, admittedly), we went to all of firstborn’s tee-ball games, Genna did ballet (which pretty much meant she twirled around to the beat of her own personal drum), we picnicked with friends and family, we were very involved in a prayer group and my son’s school.

But when G started kindergarten in 2003, things started to seem not quite right. NF was about to make its true self known.

An Ode to Oncologists

I have been having blog overload..too many ideas that I want to spew forth, from ill-advised tattoos to sparkly rainbows…and still zero energy to say anything.


So today, as my second born naps off chemo on the living room couch, I figured I would begin with an Ode To Oncologists.

I figure most folks have a list of people they’d love to meet. I would love to share snarky commentary with Jon Stewart, or have lunch with Bernie Williams, or just behold the splendor of Aretha Franklin. Two years ago I got to meet one of my favorite singer/songwriters, Sara Groves,  and I instantly burst into hysterics as I tried to tell her what her songs had meant to me during some really difficult patches in my life. That was a Meeting FAIL.

I imagine I can pretty safely speak for EVERYONE IN THE UNIVERSE when I say that an oncologist is NOT on your list of “new friends to make”.

I recently heard a talk that briefly discussed oncologists, how if THEY get cancer only 9% will opt for chemotherapy because it truly is useless (I have no clue if this number is even remotely accurate, although based on some of the other gems in this talk I would guess it is Ye Olde Fanny Number, pulled from where the light don’t shine)…how they prescribe poison for people and are resistant to any other treatment options…how they don’t listen, blah blah blah. Basically, if you are sick with cancer, the gist of this portion of the talk was Run Away From Oncologists.

Granted, some doctors have the bedside manner of slugs. Some don’t listen, some are gloomy, some are arrogant.

One could perhaps note that these traits are not limited to oncologists…ahem.

But I can say with 100% certainty that the folks giving this particular talk have never actually met a real oncologist, or certainly never spent time observing one of these docs at work for any length of time.

Over the last 8 years we have spent an inordinate amount of time hanging out in a pediatric oncology clinic at one of the best hospitals in the country. Because of the nature of the community in which we’ve found ourselves, we know lots of other folks who spend inordinate amounts of time hanging out with OTHER pediatric oncologists in other great hospitals around the world .

In our experience, and the experiences of most of our friends, these docs are Mother Teresas with medical degrees and comfortable shoes.

Oncology is not an industry, and I take great offense hearing it referred to that way. It is a vocation.

The first day we met our neuro-oncologist (specifically an oncologist for brain and spinal tumors), less than 24 hours after finding out that our child had massive hydrocephalus and a huge brain tumor, when my husband and I were nearly incoherent with grief and fear and our 6 year old was hungry and crabby…our doctor spent the first 10 minutes of our first meeting chatting with G. She instantly put her at ease, laughed at G’s silliness, hugged her….


We knew within 30 seconds that we had found the right person to save our child.

Over the years we have had some really horrific times and some really happy times, and our doctor has never given up on our child. She laughs with us, tells it to us straight, gives us all the time and information we need. Whenever I’ve asked a difficult question, she answers it like a walking encyclopedia.


I love the power of walking encyclopedia-ness. I love knowing that mighty lady is my daughter’s super hero.

And you know, we are not like the lucky one in a million to get our Dr. B. (although I am so grateful, and do think we are lucky).  Most of our friends in this community have similar stories about doctors doing everything possible to save THEIR children. Adult friends with cancer have similar relationships with THEIR doctors.

This is a tough job. During one brutal season in our journey several years ago, I said to our doctor via e-mail that I was so sorry she had to give us such horrible news, even as we were crushed I felt so bad for her…I knew, through observation, that we were not her only patients to end up ashen-faced and silent in the waiting room that day…and that must be the worst part of her job. And she replied, “you put a finger on my woes”…

Taking care of critically ill children and adults is a vocation. Using inefficient treatments is frustrating for these doctors, we have seen that time and time again. Our doctor suffered with us when G’s last scan was such a train wreck. She WANTED it to work for us, which is a massive DUH, but really. It apparently needs to be said! While the clinical trial G did was a total bust for her, I don’t regret doing it. We needed to try and push research forward and hope that this would be the magic bullet for G’s tumors. We so appreciate that our doctor talked us through our options, shared her insights both about the meds and about our G, how she would tolerate more frequent hospital trips, etc.

She wants G to beat the tumors. She also wants her to be happy.

Yesterday, as we were leaving the exam area to march over to the day hospital for chemo, I stopped by the door where our doc was filling out our appointment forms. “So it’s ok, right, that she’s doing so well? “ (I get an illogical fear that if my daughter tolerates chemo well it’s not working…granted, the last chemo whomped her and then failed, so I know this is an illogical fear, but it’s hard to shake).

Our doc turned to me and smiled, “She’s wonderful. This time it will be different.”

After 8 years, I know Dr. B doesn’t just humor me. She knows I am neurotic and anxiety ridden, and she and I think alike on a lot of things related to my G, which I so appreciate. I am still a wreck about our next scan. I told Dr. B I would be full of sunshine and optimism and sparkly rainbows, (sarcasm is my language of choice for clinic), but I did feel better. It was her love for my kid that made me feel good. Her hope gave me hope, and that is the best medicine for any of this, really.

We’ll see what this combo brings. I hope it brings stability, oh, how I hope that. But either way, I know we have a mighty and loving doctor on our side who is not part of some pharmaceutical conspiracy or in this awful line of work for the money. She, and so many other neuro-oncologists and oncologists like her have a vocation to try and save lives.

So the next time someone makes some big statement about oncologists as bad guys, think about how this could truly hurt people just starting their fight against cancer or tumors or any kind of monster illness. This is a battle, and assembling a great team is key to hopefully beating the beast…

Lord knows, it is a battle…

But that will be another post.