So...Now What?

May 31


So today is the Last Day of Brain Tumor and NF awareness month.

Tomorrow it will be like this whole ugly business never happened, especially if I go and blog about something like Jersey humidity or what kind of cake I am craving.

That would almost always be yellow cake with buttercream icing, just as an fyi. As much as I love chocolate everything, I prefer yellow cake. You’re welcome.

So, now what? Now, you few brave souls who slogged through this tale of woe, now you are left at June 1, the summer shining not too far off. You also are probably totally like “HOLY CRAP, no WONDER she is a terrifying Jersey-girl-snark-attack-amazon-beast woman most of the time! She used to be so timid!” as you look for the nearest emergency exit. Heck, that’s how I feel after writing this for a month.

Even I didn’t totally realize how bad it was, these last nearly 9 years. Yeeks.

You do whatcha gotta do, you know?

G, May 2013

And once you get past establishing that yes, you are out of range of my scariness, you are probably like, so now what?

Well, I heard on Oprah radio this morning (don’t judge), “pain brings purpose” (it was an interview with Fran Drescher, she was talking about surviving cancer). I know for our family, pain DOES bring purpose. The two times I ran half marathons were fueled almost entirely by my anger and pain. And Clif bars. Ok, and hazelnut coffee. Our Coffeehouse gives purpose to our pain. Dave jumping in the Atlantic for Camp Sunshine is fueled by the pain that gains us entry to that remarkable place (and gratitude for the lifeline Camp has been for us). We’ve sold bracelets and chocolates and random tchotchke to help fund research for a cure.


R, May 2013



For us, DOING something makes us feel less like victims of NF and low grade brain tumors and more like recruits in the ongoing struggle to make these things STOP hurting people we love.


So…what can we do?

Well, we try to support groups doing research. The Children’s Tumor Foundation (www.ctf.org) is a good place to start, and the NF Endurance arm of CTF has been our go-to fundraising thing for the last several years. Come run with us. Ok, rephrase, come run with Dave, come “run” with me (I run /walk, using the Galloway method of surviving races, manage to do the Philly half in 2:15 this past year).

CTF also has NF walks around the country (if you don’t even feel confident “running” like me…although confident has never been my problem).

The NF Family Association at CHOP provides support and information to NF families who are patients at CHOP. This is a new organization, and I am really excited to see what they are going to be doing. This is sorely needed at CHOP. You can find the NF Family Association on facebook.

The Pediatric Low Grade Astrocytoma Foundation ( www.plga.org ) specifically funds research on low grade brain tumors. This amazing organization was PARENT initiated (talk about giving pain a purpose!) and has made huge strides already in understanding and targeting low grade tumors. There are many NF applications to the work of PLGA, and I think we will be looking more in this direction in the future.

PLGA sponsored the sorafenib trial; while the trial was a disaster (I believe it closed within a few weeks after G’s catastrophic scan, other kids had similar yikes), the fact that this organization is funding low grade specific therapies so fast is amazing and a great sign of hope. We have no regrets about trying this experimental drug.

We also try to support the places that give us those lily pads, those moments of hope: Ronald McDonald Camp, www.philarmh.org , Camp Sunshine, www.campsunshine.org , and the Friends of Jaclyn, www.friendsofjaclyn.org , Caring for Kids with Cancer. These make Genna’s life happy. We support them (and you can too). The Children’s Brain Tumor Foundation, Supersibs, the Race for Hope folks at the Brain Tumor Society, the 46 Mommas Shave for the Brave… all of these have meant a lot to us in our journey.

So we try to give back. I’m not going to lie…this journey is long, and sometimes the dull ache makes jumping in very difficult. Those awful pain moments provoke me to do silly things like sign up to run 13.1 miles all on one day. The dull ache months are hard to overcome. But we have to try and keep moving. We aren’t alone in this, you know.

And ultimately, we are so grateful. Even as we have lost so many friends (even within our own family), we have gained so many in the NF and brain tumor community. We have experienced amazing love from people we’ve never met. We’ve come to understand that God is always with us, even if sometimes it seems like we are alone. We have overcome our fears and tried to parent in a set of circumstances no “What to Expect when You’re Expecting” book even touches.

We have lost too many children to NF and brain tumors. For them, we have to keep going.

For them, we have hope.

For our Genna, and our Rosie, and yes, my husband Dave, we hope.

To quote one of my favorite singers, Sara Groves, “hope has a way of turning its face to you just when you least expect it”…

I hate surprises, but being surprised by hope is my favorite thing ever. I pray that as we enter our 9th year of brain tumor and nf struggle, that we are surprised by hope frequently…because that is a surprise we love to share.

Peace out, friends.

kc

The Cams Crew, May 2013

Perfect Place to Stop the Show

May 30


In the words of Joseph and the Amazing Technicolor Dreamcoat (hey, I’ve made it an entire MONTH without a Broadway reference)… “this would be a happy ending perfect place to stop the show! (Genna) after all has gone about as far as she can go!”….

Yes. But no.

See, even after 8 years of yikes and such (EIGHT YEARS. I could have a doctorate by now…not just the one I gave myself in Pessimism and Snark Studies), we have to keep going. Miracle Monday ended with Genna getting chemo, and THAT was our miracle.

The changing definition of miracle has been a hallmark of this entire journey.

Genna started high school. She had more neuropsych testing which did reveal that yes, tumor growth does cause more damage to learning and processing (in the words of Homer Simpson, “DOH!”). She continued with chemo, and over time the side effects have gotten a bit challenging…but so far EACH scan since Miracle Monday has shown further reduction in tumor size in that scary section near the foramen of @^#(@% Monro .

 (BT note: the @^#@% added before brain parts is only added by moms and/or dads after years of seeing tumor locations described on radiology reports and having a NEW unheard of locale show up).

We’ve had to hold chemo a few times due to elevated protein levels (back in January, and now since April), a common toxicity associated with Avastin, indicating that G’s kidneys need a break (she feels fine). We have learned that even a teeny tiny scratch bleeds like the dickens if you are on Avastin. We’ve also learned that some of the hidden side effects of Avastin are harder for a teen to deal with…

As a teen back in the tumor battle (not a little girl anymore), G has continued to struggle with school, with terrible anxiety, with sadness sometimes. She does have some FRIENDS this year at school, real friends, a FIRST in all these years. BT/NF kids often have trouble interacting with their peers, and G has certainly experienced this.

At the same time, I have gotten scarier and scarier in dealing with people who won’t step up to help G when she needs it, or who won’t take the time to LEARN what she needs. I struggle these days more and more to find my emotional footing; prolonged survival mode can be very numbing and very demoralizing. I can use certain unprintable words as EVERY part of speech. In the same sentence.

No, really. I can.

Dave, too, has lost a lot of his original optimism and zen. A lot of the time we are mostly alone, the associations we used to have just couldn’t withstand this many years of cosmic smite. I am increasingly grateful for my family, and for the folks in Dave’s family who support us. Those who remain have been with us every step of the way, and we can never thank them enough.

This road is hard. Not to be all “cue the violins! Release the mourning doves!”, but it’s hard. Stupid hard. And there is no end in sight.

NF as manifested in low grade brain tumors is an ultramarathon, not even just a regular marathon. There are mountains and crevasses and raging rivers and at some point you’ll be duck taping your feet to hold them together. NF / low grade brain tumors are like THAT.

Still, G continues to love music, and babies, and our dog Coco. She rocks out sequins and animal print whenever possible.

In 2 days G’s big brother will graduate from high school, a day I had some doubts about. The wreckage firstborn carries from years of this battle causes me more pain some days than G’s stuff, because it is so hard to find support for siblings. Rosie is doing well, she looks out for her big sister, she is STILL stable, thank God, still tiny (her NF thing, she is super small), still as shy as G is outgoing.

We carry on…

I don’t know what our girls’ future holds. I so want to be a grandma, but I understand that that may not be possible. I so want to help Genna pick out a wedding dress someday…heck, I so want to help her pick out a graduation dress in a few years (I already told her she could do sequin animal print if she wants. Really. So…yeah. I’m ok with that). But I know even that is not promised us.

We only have today. As our friend Sandra once said, back in her sickest hours near the end, when she heard someone say we have to live one day at a time , “how can you live more than one day at a time?” …and that is so true. We only have today. I forget this about 8 times a day, but it’s so true.

We have 2 weeks of school left. G can’t do chemo on Monday as planned, she is THRILLED to not miss school. Then we have finals, and that Thursday G has an eyeball check in Philly. Hopefully the following Monday her protein levels will finally be ok to resume Avastin. We can’t really stop…we know what happens when people stop Avastin.

But we only have today.

Tomorrow I will answer the “Now What?” …but we only have today, and today G just came back from a pool party at art, she has a youth group party later…she is freaking out about school so she is listening to a Popple   www.popple.us  cd to make herself feel better…

We only have today.

And today isn’t all that bad.

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…

Back in the Saddle Again

I'm sorry, this one is SUPER long. I am running out of month!
Don't worry, in this house EVERY month is brain tumor and nf awareness month...

May 27


I know, as I go through our story, that it becomes almost ridiculously repetitive…statistically improbable bad stuff happens repeatedly! Stability achieved! Scary scan—rescan in 6 weeks! Stability achieved! Lather, rinse, repeat…

But you know, that right there is pretty much HOW life with NF and low grade brain tumors can be. When our doc talked to us in the very beginning about what was going on, she referred to G’s situation as a chronic illness, and it is…just a chronic illness that can take a catastrophic turn in a heartbeat.

So I apologize for the redundancy. Makes a bit more sense now why I am a tad psycho, no?

But in the fall of 2011, we had once AGAIN dodged a bullet. G was stable after growth. We always had a very hard time with these 6 weeks after scare scans…the area of concern was never SMALLER. How can we be zenlike if nothing is smaller? But weird low grade brain tumor factoid: generally you only treat if there is growth or symptoms. G’s tumor growth had stopped…and she was asymptomatic. So we waited. Twitching and increasingly neurotic, we waited.

bullet dodging day

(and that wasn’t just me. Dave was aghast at the “growth but then stopped is still ok” thing).

So 9 days after scan day, I had to run my first half marathon, that thing which had seemed like SUCH A GREAT IDEA right after the bad scan. My knees hurt, and I was TERRIFIED. But race day dawned bright and cool, and really, the entire day was one of the most empowering of my life. Don’t get me wrong, it was hard. At mile 5 I saw my girls, hugged them, got the oomph to head into Fairmont Park…mid-park an announcer saw my neon singlet and announced “NF IS IN THE HOUSE” so I cheered back at him…By about mile 8 I was like “are we EVER going to start aiming back towards Philly again?”, and by mile 9 my knees were starting to really hate me…but at mile 10 I was all “WE GOT THIS!” to anyone around me, because ANYONE can do a 5k, and that was all I had left! At mile 12 I pulled out my Team Sandy/G-foRce! keychain, clutched it in my fist, and knew that Sandra was there cheering me on and telling me not to stop…at mile 13 I saw my family, and I was overcome with emotion and sprinted to high five them…and then realized I still had .1 to go, and my legs were DONE. Oops. ;) But I made it, and I was SO PROUD OF ME.

More phobias overcome in 2 hours 17 minutes than I thought possible. And I whomped some NF while I was at it.

These races are so important. Our NF friends on the team in 2011 meant so much to us, and continue to (Kris Whalen, who told me I COULD go 13.1 miles in all one day, Trish Budlong and Steve Kendra…these people mean so much to us).

And then…back to the race of regular life.

School was so hard for G. Just so hard. And the more scares we had, oncology wise, the scarier I became. My fuse for any kind of anything towards G was at an epic low. (That, unfortunately, has not improved). I felt like moving forward became harder each time we had a yikesish scan.

But in October Genna got to meet her other favorite singer, Matthew West. He called her up on stage during his concert and sang Strong Enough and Survivor and all the songs that mean so much to her. She was glowing with delight.

Dave ran his first full marathon in Philly at the end of November, it was a logistical yikes of getting hither and yon along the race course to give him the specific hydration things he needs (we are so careful about that after his weird collapse), and of course Rosie had the stomach bug the morning of the race (my brave girl managed to walk all over Philly to help Daddy). But once again, Dave NFE’d for our girls.

And then, right after Thanksgiving, we were due to scan again. Both Genna and Rosie were due to perform in the Nutcracker through their dance studio…my girls have been blessed for years to dance at AP Motion in Flemington, where Miss Joanna always found a way for my visually impaired, galumphy, vaguely unbalanced child to feel like a dancing queen. So G was due to be an unlikely ballerina the weekend after her scan.

December 5, 2011, is our own day that will live in infamy.

This one is so hard. Five years was just not long enough. But here it is, from Caringbridge, December 5, 2011.

"we're ba-ack!"...

at CHOP.

Inpatient.

Facing chemo.

After shunt surgery scheduled for tomorrow.

Every single ounce of my being hurts right now. We knew it was bad as soon as we saw our doctor...

I just can't believe we are here again.

I can't believe 5 years has come and gone and what do we have to show for it?

Walking back onto the onco floor was like stepping into the Twilight Zone, albeit a TZ with newer beds.

G is so upset...thanks to everyone who has texted her or called her, that is literally carrying her, when she is texting or chatting she forgets...now she is watching the CMA's (that would be COUNTRY MUSIC awards? hello?), she just had a doctor ordered bath pre-surgery and I have to do some weird anti-bacterial wipe thing later. We met the anesthesia guy, I have papers about 3 different chemos to choose from (and I know of 2 or 3 others I don't have in my bag). My head is throbbing, and I am eating a salad...I know I have to eat.

I was shaking so badly today when talking to our doc...completely held it together until I had to tell G. She had left the room...

Dear God, I cannot believe we are here again. I cannot believe she will be starting chemo again. She asked if she was going to lose her hair...

As G left our house at 4:40 this morning, she was singing in a deep bass voice, "I hate scan day! I hate scan day!"...

I hate scan day too.

please pray for us, we are just so broken...and my other kids are at home, and I don't know what to do for them, and I have no work for my classes...and how will I keep working?

unprintable moment coming, or tears....

I HATE NF AND BRAIN TUMORS WITH EVERY FIBER OF MY BEING, AND I WILL NEVER UNDERSTAND WHY THIS HAPPENS TO INNOCENT CHILDREN. I just don't.

please storm heaven for my poor G...and my other kids, too...and for me & Dave as we try to pick our poison literally for G.

peace from 3 South room 21...oh my God, I cannot believe we are here...

k


We finally had met a bullet we couldn’t dodge.

At least I had packed a just in case bag. Dave didn’t.

Her surgery went well, and started early (less fasting!), and Dr. Storm was super fast, fast enough that I was terrified to see him (his response when I said “why are you here already?”…”what, am I not that good?” , which struck me as kind of an awesome answer, honestly.

Back in the beginning, in 2004, when I read the book about brain tumors all in one sitting, people said in a very late chapter that relapse is often harder than the original diagnosis. I feel this might be true, because we KNEW, we knew what chemo was like…to be back at the beginning again was crushing.  And G was so much older, she KNEW, she understood...

this is how she really felt. Sigh. :(

See, NF optic glioma tend to go dormant at puberty, the ONE good NF thing ever. Non-NF optic glioma tend to fuss about destructively much longer. G’s optic glioma were still stable. But OTHER NF brain tumors don’t have this handy rule. So the area of concern was in G’s hypothalamus and brainstem, and it was obvious and ugly and terrifying and we weren’t sure if the shunt was just clogged or if tumor had blocked it again.

Thankfully, it was just normal clogged. We were home by Wednesday.

And as I struggled to pull myself together (we had so many decisions to make, and since we had blown through three chemos already, we were at the bottom of the barrel chemos now—or, as I said on Caringbridge, “Highly craptastic choices from a melange of sucky alternatives”), G got ready to dance in the Nutcracker on Saturday, December 10.

so freaking mighty. 5 days after freaking brain surgery.

.  

That day was a miracle. G gutted it out, she was so beautiful. She was so mighty.

Ultimately, Dave and I decided (with our doc’s help) to enroll G in a Phase II clinical trial of a drug called Sorafenib, ironically a drug I had researched for plexiforms after Rosie’s diagnosis. This drug was an oral chemo, so fewer hospital trips for G and no port…quality of life was a huge issue for us, now that G was a teen she had a say in what we did, and she really didn’t want to go to CHOP a lot. But to do this chemo G had to scan again at the end of the month (literally 12/31) and then wait until we could get approvals and such…she had to be a month post surgery…

So we were given Christmas.

Hard to deck them halls and falalalala in these circumstances, but we tried. G told me about 5 times a day that she didn’t want to start chemo. I couldn’t focus on anything, our shock over starting again was so pervasive…

Realizing too that in less than 2 weeks we are starting again is kind of hitting me. I think in the first week or so of ugh we were able to kind of focus on the YIKES, we are starting…but in kind of a theoretical way, like, we’ll be going to CHOP more, what a pain. G will need a treat post each cycle, better think of that. How will I ever get lesson plans or substitutes for my classes? Oh, is chicken on sale, better stock up…in the last few days there’s been a mental shift to dear God, this is a TRIAL drug. We don’t even know if it will work, and G’s tumors are so obnoxious in the face of treatment…we failed 2 last time before one worked…her tumors could very likely GROW while we’re on this…old feelings long buried. We have been here before. We know what chemo failure is, it is NOT theoretical for G. And this drug has so little info, but once you blast through 3 options …well, the statistics on anything aren’t super great.

And we know too many NF teens who battled long and hard. Past tense. We have so many bt friends in the thick of the battle right now, and NF friends too…it’s brutal in our community right now.  Ugh.

And Genna is scared, and not sleeping well, and…sigh.

This has not been a festive week in that corner of my brain. And I know, I know we need to be hopeful, and we will get our game faces on, and we will march forward bravely into the night, but still, it’s freaking terrifying. I think some part of me hoped and secretly thought G had gotten to some magic stable place. She had been off treatment 5 years, and at least 3 of those were mostly drama free-ish. We were the hopeful story.

And maybe we still can be. I am just saying it like it is. The reality is, this is serious. Low grade brain tumors are serious, and I have TWO children with brain tumors. Both of my little girls. This is weighing on me this week. I say it here, so when I see people in real life I can speak without falling apart, I can joke about G’s mighty attitude, I can talk about shoes, or whatever, and NOT fall apart. So far so good. But truly, this is so not good.

Genna is mostly nervous about kids making fun of her (that won’t happen), missing school, feeling weak in her legs, missing school, losing her hair, missing school, etc. It’s a lot for a kid to process, and it is so not what I hoped for my daughter.

But once again, people showered us with love and kindness. We are so grateful for those people.

G’s New Year’s Eve scan was stableish,

scan day 12/31/11

we were safe to start Sorafenib, and after ridiculous delays, 18 pages of consent forms, and bopping back and forth to Philadelphia, we finally had those blasted pills in hand.

And G began her Tumor Battle 2012,  tiny pills in the morning,  tiny pills at night.

Back in the saddle again…

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.

Lily Pads and Murky Water

May 23


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

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

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

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

From Caringbridge:

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

And I had a moment.

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

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

I can’t say that.

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

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

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

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

OH MY GOD, MY CHILDREN HAVE BRAIN TUMORS.

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

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


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

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

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

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

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

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

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

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

She still wears her shirt like that all the time.

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

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

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

Another lily pad.

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



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

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


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



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

Rosie was rock solid stable.

G, not so much.

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

The films are not nice.

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

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

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

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

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



Back in the murky water again…