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.

Fifth Time's a Charm...and Miracle Monday reprise

May 29


So we needed a new plan.

Note, it is really hard to effectively plan when you are consumed by terror and grief. Those are NOT optimal planning companions.

The last few days have been kind of up and down and round about. G’s initial relief over stopping Sorafenib was palpable…she made a quick list of all the good things about stopping Sorafenib, most of which I shared on Facebook…once I could go back on without becoming hysterical at the outpouring of support. We are really just without words for all the prayers and grief and love floating around on fb, and everywhere. In normal life we aren’t the sort of people who are generally at the center of any kind of attention EVER (I am WAY ok with that!)…we are deeply moved by everyone loving our beautiful G. It is painful to see how much everyone hurts FOR us, but we are so grateful and touched by all of this. I kind of don’t know what to do with it except get randomly hysterical, but hey, I am a pro at that.

Anyway, Genna is THRILLED to be able to eat in the afternoons, to help cook dinner again, to be able to grate the cheese for her birthday pizza in July, to have a port that will make things easier, to not have blisters anymore…

She did say that new chemo stresses her out…and yesterday , in a quiet moment, she said, “mom, I can’t believe my tumor grew.” I am trying to just acknowledge her feelings (while in my head I am screaming) and help her find the positive. Hey, no more blisters ! Hey, wanna make bagels?

I did still wake up at 5:40 Friday morning in advance of my Sorafenib alarm. Sigh.

I just keep seeing what that scan looked like. I keep seeing it in my mind…

We have spectacularly failed chemo before. I have to hope that this will play out like 2004, when we did eventually find stability even though we had major growth after carboplatin/vincristine. While I keep saying we are looking for plan B, technically this is plan E. Chemo #5. Back in 2004 I never dreamed we’d be here…granted, in 2006 I didn’t think I’d still have G here to be having these worries, so I am grateful for every second and every inch of ground science gains against these blasted tumors. I feel like I learned something about multi-kinase inhibitors (and the extreme un-inhibitedness of G’s tumors in the face of Sorafenib)…so for right now, I do not want to try another drug in that class.

We still have a lot of alphabet left. Please keep moving, scientists, I’m not sure you get past H or I yet…

last year's Wall of Courage pic

Ultimately, we decided with our doctor to start G on a protocol of Avastin, Irinotecan, and Temodar (since she got a year of stability out of temodar back in ’05; hey, I was willing to throw the kitchen sink at these tumors, figuratively).

Two weeks after the awful scan G had port #3 surgically implanted in her chest. This time the doc put it on the other side…and slightly lower, since for older girls they (docs) like to put it where the scar is less visible. Two weeks after that, G started Avastin, Irinotecan, and temodar.

Again I spent weeks researching, trying to finish up the school year at work, planning for all the awful side effects these meds are supposed to have.

Weird BT factoid: WAITING to start treatment is often worse than the actual start itself.

G was full of dread, full of dread to start again. To have to have her port accessed again. To have to sit in the day hospital (way nicer than it was in 2004). To see new chemo plugged into my child. Somehow watching chemo drip is more agonizing than watching G swallow a pill.

But she got through. And honestly, the side effects were manageable. Not fun, but manageable.

And in response to all the mayhem of our life, we decided to get Rosie a dog.

Yes. This seems INSANE for anyone who knows me, but it felt right.

VERY weird bt/nf factoid: things you never thought you’d do seem utterly reasonable after a lot of years of insane things happening.

We told Rosie about the puppy on her birthday, 2 weeks after G’s start of chemo #5. While originally puppy was going to be named Fluffle Puffle, Rosie ultimately opted for Coco. Not to jump ahead too much, but Coco was one of the best things to ever happen to our family.

G graduated from 8th grade. This was an awesome but difficult day, in light of circumstances. I don’t want to talk more about why. I know anyone reading here is really smart. I know you can figure out why.

G and I went to Cape May for a few days for her 8th grade graduation getaway (a tradition we started with Andrew), and she sat on the beach and climbed a lighthouse and rested and ate ice cream and generally had a lovely time. Rosie and I went away for her 10th birthday trip (yeah, I didn’t figure out these 2 traditions would happen the same year for my girls!), she was so adventurous and curious and delighted with everything. The difference in travelling with each of my girls is staggering…but both trips were wonderful.

Anyway, we started a summer and a new protocol and managing symptoms and vacation and blah blah blah. It was tough, especially in light of such a massive chemo failure. It was tough, mentally and emotionally for all of us. We were just so wrung out.

The girls and I went to Camp Sunshine alone (Dave & Andrew couldn’t come)…and in that initial parent group, where all the parents introduce themselves and say a speck of their story, I had to talk, Dave wasn’t there, and I BECAME THE CRAZY CRYING LADY. You know that lady. That person in any kind of support setting who instantly loses it as soon as she says “brain tumor”, that lady who seems like she is teetering on the precipice of insanity? Yeah, Me, summer 2012.

From Caringbridge: I don’t know how to put into words what Camp is. Well, here’s one way: it’s somewhere that other parents of bt kids were crying for MY kid, because they love her…just as I love their kids. We support each other, we cry, we laugh (a lot), we hula hoop and eat ice cream and talk science and school and chemo and childhood. It’s like a zone of instant family, and only the nice kind of family, not the ones who…ok, not going there. But you walk in, and you are greeted with love.

Urp.

Camp was awesome.

And yet, at the end of Camp lurked a scan. And after that horrifying April scan, that nightmare scan, I was terrified. Like, I could taste terror, the closer we got to scan day the more visceral the experience became.

From Caringbridge: My anxiety is no longer measurable by human standards of measurement

And here I think I just need to copy a blog post from last year. Miracle Monday. I know this will make everything long, but…it was a DAY. A Day like no other we ever had.

Miracle Monday

I need to tell the story. As such, this isn’t really a blog entry, I guess, but I feel like I need to write this down before it gets buried like so many other parts of our memories do.

We left so early on Monday morning, the sky was still dark and the air thick with humidity, the kind only a summer in Jersey can produce. Genna was quiet on the trip, she ate her jello before 6 a.m. and then just stayed pretty quiet. I had only slept about 4.5 hours, sometimes on the night before a scan I stupidly don’t go to bed, as if by not going to sleep I can prevent tomorrow from coming.

Just south of Lambertville, near the jail and the environmental center (interesting mix, right?), I was going to mention to Dave that we often see vultures there…seriously I started saying, “you know, a lot of times…” and then had to stop, a flock of about 30 vultures was wandering about the middle of the little 2 lane road next to the canal. Um, yikes. I would prefer to see a rainbow on the way to scan day, you know? Not a carrion eating scary as all get out massive bird yikes ew confab in the middle of the street.

We continued on.

We were making good time, and then in a very unusual place (around exit 40 on 95) traffic stopped…apparently a truck had flipped over, we learned the Philly traffic channel pretty early in our pilgrimages to CHOP, we were stuck and I kept trying not to obsess at the clock, wondering if I would have to call MRI and tell them we’d be late. Leaving the house at 5:23 a.m. and then being Late just adds insult to injury.

I was going to take a picture of the truck when we passed as part of my photo archive (my anemic photo archive, admittedly), but then we saw it, and it was bad, it wasn’t just flipped, it had come from the northbound side of the highway, crashing through a guardrail, hurtling across the steeply sloped median, and then crashing through the guardrail on our side, ripping off the front of the cab in the process.

I prayed for that truck driver. I hope he survived.

After everything, we DID get to CHOP on time, Dave dropped us off by the door so we could sprint in…we got sent over to Seashore House, the nurses all said hi…this is G’s 5th MRI in 9months, that’s a frequent flier by MRI standards, so a lot of folks remember her. She got measured (the nurse said she was 4’ 11”. Not sure that’s right, but G was happy), into her hospital garb, ready to go…

And then the nurse tried to access her port.

G had to lie down, which she HATES, and then for whatever reason she felt it, the pinch was awful, not sure WHY the lmx didn’t work…and the nurse got no return flow, it wouldn’t flush, nothing. To her credit, she called the IV team instantly…but then the iv team lady came down and just looked at the port and said, “let’s call oncology”. Well, that’s the quick version, her English wasn’t super great, and she wanted me to go with her and see if we could get someone in the day hospital to do the port. So we wander through a new back secret passageway I haven’t been through before and ended up banging on the back door of the day hospital. The nurses let us in, we tried to explain the situation, they said um, you have to register (what, you can’t just sneak in the back and have someone access the kid? Yeah, I guess I get that), so I had to go out to the main desk and explain everything, register G as a patient there, get her paperwork, drop it in triage, by this point they had G in all her hospital garb glory paddling along behind another nurse as I tried to explain to our nurse (and our doc, who happened to just be getting there) that we were having a Port-tastrophe.

I am not going to lie, this whole scenario pushed me to the brink. The level of stress coming into this day was mind blowing. This glitch in the day threatened to wreck me before we started.

The day hospital nurses finally got G accessed (in one simple stick. Lesson learned, schedule access for clinic), and we marched back downstairs, already late.

Finally we get G back, start the sedation process, she got her Versed, told her jokes (at least she had new ones about Cows), hugged and hugged us, and then fell asleep. They wheeled her away.

Dave went to get the promised Doritos.

Sitting in the dim sedation room, the cranes of the new construction site across the street just visible through a window across the hall, I completely unraveled. The pain of that hour…

All I could think of was how many of our friends and people we don’t know have sat in those rooms, waiting, waiting for news they know will likely not be good, trying to cling to hope, trying to not think of the outcomes that we all know happen in our brain tumor community. I thought of my CHOP mom friends who have travelled the hardest of final roads with their children in those same rooms, I was praying so hard, not even praying just begging God, but knowing so many other people who have begged and then things still are…well, what they are.

Finally I went back to my diphtheria book. Yes, I am still slogging through that.

Dave returned with some food, I did try to eat a soft pretzel, I read, but then the clock was ticking on, an hour, an hour ten, an hour fifteen…now we are late, she is still in there…and I started to pace, 5 steps, pivot-step, five steps, pivot-step look down hall to scanner rooms, five steps back…over and over. My stomach started roiling ominously. Only once have I ever actually thrown up at CHOP, our first night there ever, the stress of that night pushed me over the edge (digestively and in other ways), I still can’t eat those lovely pecan sticky buns from Panera. Alas.

I had that feeling again.

Finally they brought her back after 90 minutes, she had woken up 2x so they had to stop things so she could get a boost of medicine.

“I am not sleepy At all,” she kept telling me, even though she could hardly sit up because of the sedation. She munched on some crackers and sipped juice, we got our papers, we were free. (Indigo Girls moment there).

She wanted to go to the 2nd floor lounge area for a bit, we got her on PBS kids (her favorite, I know it’s so young, but she loves those Zoom kids from years ago), I posted a quick update to facebook, and then it was time to go upstairs.

My stomach lurched about as we got G settled, we got her labs, we parked her in the playroom (she gets a wheelchair after sedation). Of course I took her to the bathroom just before I remembered they would need a sample to check kidney function. We had the same moment early in the day when they had to make sure she wasn’t pregnant. Yeah. Don’t get me started.

Panic has mass. Terror has claws. I can’t even put the feeling into words, the intense pressure of that hour wait. I felt like my insides were just folding down smaller and smaller inside me, my begging got frantic, I began promising God all kinds of things, I will Let It Go, the whole issue with my family member who says hateful health things for money, I will never mention it again…then I re-thought that, because standing up for what’s right isn’t something to give up, but I did decide to Not Obsess about it anymore, to not engage unless I need to in person. To make ME healthy so I can be a good mom to Genna. I promised to make all the long neglected doctor appointments for ME that I have put off in my own anxiety and paralysis…the dentist, the annual, the counseling, heck, even the vaccinations I need boosters on (if safe, I had to ask the doc that first)…please God, I will do anything.

And I started to pace again, along the wall by the day hospital desk, 12 steps, pivot turn, 12 steps, pivot turn, try to look nonchalant while inside my mind was screaming, screaming.

I was freaking Dave out.

I sat finally, and held my head in my hands, willing my stomach to settle (fail!), willing myself to not just lie on the floor until someone called environmental for clean up. And then Dr. B came out and called G back.

And the ice formed, a case around the hysteria, and we walked back.

We were in a different room than usual, that was unsettling, but at least this room had a colorful wall. The bt side of clinic moved, and a lot of the rooms are still plain white, and that bugs me in a completely irrational way. Paint the dang walls fun colors already…

We waited in the room a minute or two, Genna decided to practice puffing out her cheeks, the last few neuro-checks she’s had she gets totally giggly at the cheek puffing point. So she was practicing that when Dr. B came in. She started chatting with G.

This is one of the things we so love about Dr. B, the way she is with Genna, but on scan day she usually gives us a quick “it’s good” before chatting, when she doesn’t it usually means something awful is hitting the cosmic fan.

“You can check me and then I am going out I do not want to hear ANYTHING,” Genna announced after cheek puffing was done.

“not even good news?” Dr. B asked.

“No.” Genna answered, “I am going out.”

I couldn’t hope. I couldn’t. But there was a glimmer there…I felt so sick.

G finished getting checked and then decided to wheel herself out the door and down the hall, she got about 5 feet before we could hear “ow” and crashing noises, so Dave went to help her get back to the playroom as Dr. B sat down at the computer. I stood up behind her. After 8 years I am a master at speed reading over the doc’s shoulder.

And there was the report, she scrolled down…and I saw the words “diminished mass” , “decreased enhancement” …

“it’s smaller?” I whispered. I had no sound in me, just a whisper.

Dr. B looked up at me. “It’s smaller”.

Dave came back in , I didn’t even look around, “David, it’s smaller…”

One tear rolled down each of my cheeks, I did NOT want to start crying but the flood was so there, those tears just quietly leaked out , I grabbed a tissue off the desk by the computer and Dr. B proceeded to show us the pictures.

I am crying even as I type this.

I don’t post MRI images, I just can’t do it, but in context, April’s scan was horrible. We have never seen one so bad, I refused to see it on two other occasions (a first for me), the growth was catastrophic. G has been having dizziness and some eye issues, how could that NOT mean progression?

But pictures don’t lie. Well, MRI pictures don’t, radiologists don’t have photoshop.

The new scary area was a fraction of what it had been. A fraction. From slide, to slide, to slide, to slide, it was smaller by every measure on every slide. The ventricles were back to a near normal size. The giant mass was just a thumbprint, the bright spots were now flecks or invisible.

I just kept saying wow. And Holy Toledo. And wow again. And Holy Toledo. To say that we were shocked is such an understatement. I have never seen smaller tumor. Never.

“This is an amazing scan,” our doc said, and we laughed about how it did not get old, flipping back and forth from May to now, May to now. (we compared to the baseline, not the actual first trainwreck scan in April, but the two scans in April/May were the same).

We knew what the stakes were going into this. My anxiety was legit, and Dave said, “I’ve never seen you like this”. He apparently forgot 2004 and 2006, but yes, it’s been a long time.

I had to get Genna. She needed to see this, so I left, and bopped, BOPPED down the hall, I could see her in the playroom, asleep in the wheelchair. Apparently she WAS a little bit sleepy. ; )

“G, “ I said, and I could feel those two lonely tears threatening to become a tsunami, “G, your tumors are smaller, they are way smaller!”

Her eyes got wide, and she said, “they are?” …and we high fived, and Dr. B came out to roll her back…she needed another blood pressure check due to a typo in MRI, but G was fine, and then we showed her, we showed her the big white blob and the small gray blob (it even picked up less contrast), we showed her 4 or 5 pictures and she was so happy…

I hugged our doctor, and we paraded out to the playroom and then nearly immediately to the day hospital. They were ready with G’s chemo.

I seriously felt so shocked, shock, too, has mass, like you are inside a giant balloon…G was planning an immediate pizza party and inviting Dr. B for good Jersey pizza, Dave and I started texting…

And then the shockwave continued, sharing that news, sharing it with our families who knew, who really knew how bad things were, and with our close friends…the shockwave of everyone who expected the worst in that text, and instead got “THE TUMOR IS DRAMATICALLY SMALLER!’…it was humbling and beautiful and scary and a treasure. I just …

There are no words.

Which is a funny thing to say 5 pages into a story, but you know what I mean. I don’t know how to describe that feeling, of feeling the bounce back from everyone literally hitting the ceiling wherever they were, rejoicing for my little girl, our family, this blessing, this miracle of science…

Our doctor joked that she was going to come back and check on me, because I was so boggled. No joke, I was.

G slept through most of her chemo, we texted and texted, I called up to Rosie’s camp and cried with the nurse there over our good news (she went to find Rosie for me), and then when G was done we headed home…and my sisters met us with Costco cake and pink champagne, and we rejoiced and cried and just rejoiced, and we toasted The Scan That Did Not Suck.

I did make my dentist appointment already, and I am trying to find a doctor for my other appointments. I am trying, trying so hard to make this reprieve count, to be the mom I need to be for G, the mom I used to be…to make our home less yikes, to make our family be more like it used to be. I am trying to to let new anxieties creep into the space left by that pre-scan terror. Rosie scans next week, so I do have some legit worries on tap, but… We have time, and time equals hope, and we are so grateful for both.

So that is our scan day story. This is rough, but I had to write it down so we do not forget the Day we Had a Miracle.


And that for today is the end…but this one being long is ok, right?

Sorafatastrophe, or the 4th Worst Day Ever

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.

We've almost made it! thank God, this has been way less fun than I anticipated.

May 28

From Caringbridge (and sorry, these recent ones mostly are. I just have nothing in me to elaborate much further).


Hey, all.

Tumor Battle 2012 has commenced

At 6 a.m. G swallowed her 3 pills and started smiting her tumors. She was pretty upbeat about it once she realized she could swallow all 3 at once. Then she & Dave went out to get First Day of Chemo Bagels.

This led to a cheerful bopping about singing of “first day of chemo bagel…la la la la la …wooo!”

Sigh.

Please pray that the side effects are too yikes. I am going to stay at school after my classes until the end of the day just in case she needs me. This is my plan for the near future. I’m also hoping I can then keep most of my schoolwork to school, and leave home to home.

At least she was really perky when she left today.

There is some relief in starting, I guess.

I didn’t sleep at all, I knew I had to be up by 6, so…I kept waking up and waking up and waking up all night. Then one of the pills dropped on the floor when I was opening the bottle, and the dang thing rolled…the sight of me & Dave crawling around the kitchen floor searching for the tiny investigational drug that was so hard to get and likely is not supposed to be dropped onto a kitchen floor and lost ON THE FIRST DAY! Ack. Dave eventually found it…

Dose 2 will be around 5:30 today…G can’t eat for 2 hours before or 1 hour after, so that might be tricky, but …Game Face is Now On.

Here we go…

Peace,

k

Game Face On...Tumor Battle 2012 Begins
and if this teaching thing doesn't work out,
I am going to start a motivational t-shirt business

And so it was.

We got into the routine of it pretty quickly, this Sorafenib thing. I got pretty good at explaining it to people, this trial drug. We bought G all sorts of soft shoes since Sorafenib can be hard on the hands and feet. Weird, right? G hated the fast after snack in the afternoon, the odd timing of meals AROUND chemo. I felt constantly on edge of “don’t forget!!”

Rosie had a stable scan, we had many epic trips to Philly…and G slogged through. She tolerated the medicine really well,mostly. She was so tired, but generally ok.

Until the President’s Day session at Camp Sunshine.

She just wasn’t herself, she was refusing food, falling asleep randomly (like to the point where she was scaring the other bt moms.)

BT NOTE: If you are freaking out other brain tumor parents with your brain tumor kid, you know you are in Deep, Deep Yikes.

We nearly went to CHOP over it, but then G perked up a bit. But generally she was so tired. Her feet hurt. Her limbs cramped. She was exhausted, and just sad. She would lie in bed and worry in the mornings, instead of getting up to go chat with Grandma next door.

Reading through these entries on Caringbridge hurts my brain so badly.

G is still struggling with fatigue—I have come to understand that weekends are just sleepy times for her, she pretty much lay in a heap all day; the last 2 days her feet have been more sore…I can’t SEE why, I believe that they hurt more, but there’s no new blisters I can see. Her ears are a mess…I didn’t realize how bad they were because of her hair, but eek…they are like peely reptile ears. My poor G. Lotion does seem to help. Sorafenibed again!

That said, we were talking about NF the other night, a little friend from our slide show above just started chemo this week, the same one G started with back in ’04…so the girls had questions, and I apparently have some level of PTSD. Urp. But Rosie wanted to know about NF1 and NF2, which was worse…trying to explain genetic variability to a 9 year old is a bit tricky…finally I got to “some people have NF badly and some have it not so badly”. G piped up, “I don’t have a very bad case.” Rosie jumped right in, “I hardly have it at all!”

Genna has multifocal diffuse inoperable brain tumors, a vp shunt, vision impairment, learning challenges, and she’s on her 4th chemo protocol. Even my sweet Rosie, who has not needed treatment, has 2 tumors in her head.

You can’t really have only a little NF.

While I managed to just kind of smile and nod, I was struck by how that moment reflects who my G is, particularly. She is so mighty. She just takes whatever comes…sometimes with fear, reluctance, and sorrow, but she takes it and keeps on going. She is so mighty…and Rosie wants to be mighty too, and I can see she is growing into that, and I pray she is spared what G has had to endure…

And then it was Holy Thursday, and time to scan…and we left for CHOP so early, and got G in…

And everything, every single hope died that day--not for the first time, but anew.

Thursday, April 5, 2012 8:59 PM CDT

Hi, all.

Today’s final score: tumors 10 billion, sorafenib zero.

G’s scan was a lot worse.

Like, even WE were kind of shocked…

So we regroup, we plan, we start again. And we beg God. We beg for mercy. We beg for what so many other parents have begged for their bt kids.

G said to me today, before we saw the doc, “Mom, I told God whatever He wanted to do was ok, if I have to stay over, or start another chemo, it is what it is”. And I took her hand and told her she was so brave…that I knew she was scared, but she was doing what she had to do, and that meant she was so brave. I told her I was so proud of her.

We have to wait 4 weeks for the Sorafenib to get out of her system…and then we will begin again, if I have my way it will be on the day that marks 4 weeks or just after…the beast has to know that we are not going down without a fight.

G took it pretty well, MUCH better than in December. She was pleased to not have to do chemo at dinnertime anymore, she asked if she could just get a port and get it over with…but no. She knows we will have a plan, likely some cocktail involving avastin.

As we drove to CHOP at 5 am, we marveled at how gigantic the moon was, so big and white…then gradually yellowing, until it slipped beyond the horizon…and I realized that song is right. The darkest hour really IS just before dawn.

All I can do now is pray for dawn.

Thank you all for praying for us. Thanks for all who texted G with jokes, pictures, random chitchat…that makes her smile. And come hell or high water, I need her to smile. She was smiling at the end of the day, our long talk with Dr. B got G some one on one time with the child life specialist, Megan. They were playing cards when I retrieved her. “That was so fun, mom,” she said…

I may or may not go on facebook tonight, to see everyone so sad is like knives in my heart, and my heart is already broken today. But thank you. I also learned I get wickedly carsick if I text in the passenger seat for 2.5 hours. Ergh. And tomorrow I can’t eat, so this should be interesting. Good Friday my fat fanny.

I knew this was coming, but it doesn’t make it any easier.

We were devastated. Our priest referred to the “economy of words” this past Sunday, and on Holy Thursday, 2012, the economy of words simply could not describe our brokenness, our fear, our despair. Sorafenib didn’t just fail. It was a catastrophe. We have never seen that speed of tumor growth, and I hope we never do again. It was horrifying, those scans.  Horrifying doesn't begin to describe it.

Our poor G…

Storm in the Playroom

I almost forgot to post today...
This one is a little discombobulated, but it is so late, I just want to get something up...and as I mention below, THIS ptsd fest is still fresh.  I just don't have the energy to dig out pictures, but I will tomorrow.

May 26


As we entered summer 2011, we made another med switch for Genna in a desperate attempt to help her with her anxiety, we realized Rosie needed to wear an earplug in her bad ear while swimming, and we tried to get my son to survive sophomore year of high school.

July of 2011 was full of fun, a trip to Lake George with friends, a wondrous trip to Camp Sunshine with our bt friends, and then birthdays for Andrew (16!) and Genna (13!)…I officially had TWO teens in the house.

In all the haze of frosting and festivity, I almost forgot a double scan day was on the horizon.

Ok, that’s a total bold-faced lie. I didn’t forget.  Scan day is always like an elephant on my head.

July 26 was scan day. It went like this. (this PTSD is much fresher, so…yeah).

TUESDAY, JULY 26

just a short note...

Rosie's scan was rock solid stable. They did an extra series of ear pictures, her bones & nerves are intact. She didn't need contrast, (ergo no iv), the scan was shorter, she was triumphant and happy.

G's scan...not stable. The nurses took 4 sticks to get her iv...she needed extra meds to fall asleep, then was nearly inconsolable when she woke up (a side effect of the meds). Thanks to Joan Kerpan and Kyle's Peace G did recover from that with a new tie-dye shirt, a blanket, and coloring pages. But in the middle of her activity the neurosurgeon came into the playroom...

and time stood still.

My insides just curled up like the feet of the Wicked Witch of the East after the house fell on her.

He asked us some questions about how G has been feeling, palpated her shunt (which was working ok), said her ventricles were a little funky (my word)...and left.

Well, it doesn't take a brain surgeon to figure out WHY the ventricles might look compromised....

In some ways it was better, I had near cardiac arrest THEN, so when Dr. B cheerfully talked to the girls without the normal "stable!" at the start, I was prepared.

G has another area of growth, again in her hypothalamus, this time across from the area that scared the crap out of us last summer. So we have a blob on one side and Halley's comet on the other (that's last year's yikes, so 2010).

Sigh.

We rescan in 6 weeks. Then, if it's still bad...

Good thing we learned so much at Camp. We might need that info sooner rather than later.

I am going to go collapse (or, more likely, wander the house in a kind of wired dismay, I was too calm at CHOP) , and I will likely hide a few days...thank you for praying for us, and please pray for my G. She's ok right now, but I don't know how she'll feel once she thinks about this with a clear head tomorrow.

thank you, and peace,

k

Brain tumor note: if a neurosurgeon comes to find you in a playroom, you are totally, epically, thoroughly screwed. SCREWED.

Monday, August 1, 2011 1:04 PM CDT

Hey again.

So…here we go again.

I should be researching, I should be reading up on things, I have not started that yet. I feel the inexorable passage of time acutely, but I am finding it hard to get ahead.

For those who have asked, Genna is doing ok right now. She really hasn’t said ANYTHING about the scan. I mentioned at Costco the other day that we were going to stock up on snacks and such (pretzels, granola bars, the staple foods of our house) before September, and she put her hands to her head…I hastened to remind her that we did this last year, too, and just ended up with months’ worth of peanut butter.

We can always hope, right? It’s just that last year’s Yikes was NOT introduced by a neurosurgeon in a playroom. Mega Eek.

G did ask me, oh so quietly last night, if she had to start chemo again would she get another port.
The 4 Stick Yikes of last week’s scan has been bothering her.

So she IS thinking about it, and I expect I’ll be fielding more questions with uncertainties and crappy answers over the next 5 and a half weeks.

She had an odd moment the other day, her eyes felt blurry…but she passed the maternal shunt check, and after a little rest felt better. Ugh.

Personally, I kind of don’t know what to do with myself. So…did I call a therapist finally? Did I go and spend time at church? Did I find a quiet spot to think and regroup?

Um, not exactly.

I signed up for a half marathon.

It seemed like a reasonable idea. I was so angry. So upset. So determined to run. To pound every last cellular yikes out of NF. So angry. Any time I went out to run I muttered "f-you, NF, F-you, NF" as a cadence to keep me going.

Anger is a powerful motivator.

Of course I was also terrified. So I asked Rosie to cheer a lot for me, but really, what was the worst that could happen?

“Well,” she said, “you could collapse. Or there could be a tiny rock on the ground and you don’t see it and you fall down and don’t finish the race.”

Yes.

So once again we were waiting, waiting to see what would happen…and you know, This time, G was scared. For the first time ever, she asked me if she would die.

HOW THE HELL DO YOU ANSWER THAT?

She still wanted to celebrate 5 years off chemo. Sigh. Hard to be festive when disaster is lurking.

And then we were back to scan day, August 31, 2011…

Wednesday, August 31, 2011 7:59 AM CDT

quick word:

stable.

no chemo now.

I am road kill, but so relieved. This roller coaster is killing me, but we are so grateful and relieved.

Longest day ever (left home at 5:17 a.m, home at 8:20 pm), clinic was insane, drive home was awful, but G is stable. The @^#&(@umors stopped again. They did not shrink, they did not do ANYTHING...and you only treat low grade tumors if they are causing symptoms or growing (since chemo is mostly intended to stop them...G had gallons of chemo and it never shrank ANYTHING). So the good news of STABLE...which is awesome beyond all...is still in the context of holy @^#@That's a pile of tumor in my kid's head.

But tonight, I will sleep and hopefully not dream of oncology, and G will hopefully sleep (she is a train wreck right now, who can blame her?)...we live to fight another day.

I asked our doc how many bullets can we dodge? A lot, she said. So we keep dodging...

thank you all. thank you God, and thank you all for pulling for us. This round has been hard, it's so hard. It means so much to G to know you are in her corner...

Another reprieve. G could start 8th grade, she could just be a kid again for a little while…but this scare knocked us down, badly. And dang, I still had that half marathon to run!

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.

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.