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…

Camp Out at Club CHOP

We were stuck at CHOP, waiting for G’s cellulitis to clear AND her counts to come up.

Watched counts are like the proverbial watched pot. Day after day we would wait for those labs…and then they would come tell us we were stuck for another day. It was so demoralizing.

this is the first time I ever really took many pictures at the hospital. 

Genna FELT fine. I mean, she felt kind of chemo ugh, and tired, but she loved the Zoom website & the high speed internet at CHOP. She couldn’t go to the atrium or do any exploring because she was wildly immune-compromised, but she was allowed in the oncology playroom. Because the length of our stay was so uncertain, we really didn’t have many visitors and G was mostly a VERY bored 7 year old in a VERY boring hospital room—even worse after we got exiled to a surgical floor with about a half dozen other onco kids…there were so many kids inpatient, they needed all the onco rooms for kids who needed to receive chemo. The nurse on 4 told me she nearly had a heart attack reading G’s chart.

G wanted a picture of the docs on rounds.
At least Dr. B was on service the first few days.

cards from home/school/friends. Can you believe how small she was? sigh.

We were in a foreign land in our own hospital. I had to spell out neurofibromatosis again (the only time I ever had to spell it at CHOP).

G flushing her own iv. She was the master at this. 
 She also developed an addiction for those hot pack things. She still loves them.

I was also trying to learn the whole counts thing. Apparently after so much other chemo, G’s bone marrow just freaked out at the TPCV. She needed several more transfusions over the 10 days we were stuck at CHOP. She also had to have multiple ivs, due to the cellulitis her port was off limits.



The ANC is impervious to motivational posters.


We made motivational posters for her ANC (absolute neutrophil count: the magic number that had to be moving up for us to bust out), we sang the Low Low ANC Blues, we colored and watched way too much tv and generally went stir crazy. G was miserable.

Time. Crawled.

After a week, Dave brought the kids to visit. Then we had 3 bored children in a hospital room.
G still does crazy eyes in pictures.

While we were there our friend Timmy had a bad scan. It just seemed like everything was collapsing for everyone we cared about. And our own scan day was only a few weeks away. Due to the new tumor on G’s MRI in November, we were going to have another MRI scan at the end of January. Stir crazy + scanxiety = online shopping for G’s first communion dress, which was way too expensive but perfect (a friend found it for me, and I looked it up on the playroom computer).

After a week at CHOP, Genna’s hair started falling out. In piles.

This was the straw…

Because with no hair, everyone would know. And we couldn’t deny any more that she was sick, and …I don’t know, but after 18 months, to have her hair start falling out just flattened me. No one could tell me why it was happening, G was so scared kids would laugh at her. I was so done watching her suffer.

Sigh.

Ultimately she only lost about half her hair. But in those days of hospital malaise, it was so hard to bear. I never left her room, except for 7 minutes in the morning when I ran to get coffee. We felt so trapped.

But finally they let us out. We got clearance very, very late, and after a last minute transfusion we busted out at 1 a.m.

There is no traffic on I95 Northbound at 1 a.m., just for reference.

G was so happy to be at home, even though school was so hard (the nurse had me on speed dial, I think), she was happy to show off her new glasses (which we picked up as soon as we could), and I tried to scrape myself together for the now one week away scan day.

G was so upset about her hair. We could mostly cover the thin spots, but G was upset by it all.  My sister mobilized a “hat hunt”, and people all over the country started sending G hats. It was amazing. The post office had to leave an extra bin for the overflow hat packages.

And then it was scan day (MRI day. I use the words interchangeably).

That scan day, Monday, January 30, 2006, was the second time I had the worst day of my life.

And for the first time, I really couldn’t say much on Caringbridge. For the entire month that followed, I never really said what was going on. Our lives were shattered, and I just had no words.

Monday, January 30, 2006 8:33 PM CST

Hi, all.

No miracle today.

The scan was not what we hoped (to say the least)…the neuro-onc /neurosurgery doctors are going to meet and determine our next best course of action.

Please pray for us.

Peace,

Kristin

What the doctors thought…what the scan LOOKED like, those horrible pictures…it was our worst nightmare.

The month of darkness had begun.

G and her new glasses. And smushing Rosie's face.

Meetings, Medicine, and Making Sense of the Madness

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.

G went to school today, sleepy (apparently she fell asleep during English), but flush with the good news of a decent MRI yesterday.  She is happy. I have to embrace that and celebrate the hope of each day.

May 7

This one is long too, I am sorry. I’m leaving out so much. . .

The neurosurgeon was freakishly young, and ridiculously zen.

That was all I could think as we met with him, in his office at the Children’s Hospital of Philadelphia. He was SO calm. And so young. Granted, we were so young too, but whatever.

I think he showed us a model of the brain, I think he talked to us about G’s scan, I know for sure that he wasn’t as worried as the pediatrician. We did get to wait a day, not all hydrocephalus kids do, so he was pretty zen about it. He told us we’d have to have surgery the next day, a shunt would be put in to release the fluid, a tube would go from the obstructed ventricle (G had “obstructive hydrocephalus”, ie a blockage caused by tumor), through G’s neck and down into her abdomen.

Yikes.

After we talked to him, he sent us to talk to a neuro-oncologist, a brain tumor doc. G was pretty hungry at this point, but we had no clue if we had time to get her food at the cafeteria, so we tried to hold her off a bit, we promised her a happy meal later.

I don’t remember ANYTHING about getting to Dr. B’s office. Not one thing—except that there was a sign that said “Neurofibromatosis”—I would not have to spell it for anyone! This was a huge comfort (that sign is now gone, but I still don’t have to spell out NF). All I remember is that when we got to her office, Dr. B spent the first 10 minutes of our appointment talking to our hungry and increasingly crabby Genna. She chatted with her, found out what she liked, there may have been jokes told, I’m not sure. But I knew, I knew as this woman who Knew How To Save Kids With Brain Tumors talked NOT to us but my child, the actual Kid With Brain Tumor, that we were in the right place.

She eventually explained G’s tumor to us, what we would be doing in surgery, what was the “gold standard” of chemo for this type of tumor.. . Genna’s tumor was a bilateral optic-chiasmic-hypothalamic glioma. (I spent the rest of the night figuring out how to spell that frontwards and backwards. Literally, I could spell it backwards by morning. Somehow that gave me a sense of control, being able to spell it backwards). This is just a brain geography term, really, telling us the tumor was wrapped around both optic nerves, through the chiasm where the nerves cross, and into the hypothalamus. Translation: massive amounts of tumor. Pardon my language, it was shitloads of tumor in my child’s head. And none of it was operable. To operate would leave Genna blind or worse.

Yes, worse. That’s code for severely disabled or dead.

G was ravenous by the time we finished this meeting, we were sent off to the Pediatric Intensive Care Unit, the PICU, which apparently is standard procedure for shunt patients. We were terrified. Genna was hungry AND scared.

We tried to get settled in the PICU,G was nearly berserk with hunger. A fellow came in, I don’t know who he was. He told us G couldn’t eat, we needed to go get a CT scan for shunt placement sometime that evening, so she couldn’t eat. I told him she needed to eat, it just wasn’t fair to her since we had promised her that she could eat…and I needed at least one promise we had made her about things to be true...since things were NOT going to be ok...

He told me life wasn’t fair.


It is good that after that night I never saw that doctor again, the doctor who put G’s films, her horrible scan up on a light board and gave a pompous lecture to the students trailing him, a lecture about the train wreck of my child’s scan, right in front of but completely ignoring Genna. (I asked Dr. B the next day if we could take that picture down. She did, immediately). He had one of those med students fill out paperwork with me, and I did fine, I did fine until she asked, “does your child have any health problems?” and all I could choke out was “you mean besides the brain tumor?” and then I got hysterical and Dave had to take over.

That man was the ONLY bad person we ever have met at CHOP. In 9 years, hundreds of people, he is the only one. For years I have prayed that I can forgive him. And then I remember that night, and realize THAT prayer has not been answered. I hope he is not still in pediatric medicine.

Genna was distracted by the nurses who played Candyland with her, giggling and cheating wildly.

I actually had to leave to go throw up. I have never had that happen before, my body just went haywire with the stress of the day--I was so afraid they would think I was really sick and make me leave, so I went and found a bathroom down the hall, outside of the PICU.

At some point that night G finally got her CT scan (unsedated—she could have eaten after all), we got her food, and she played more Candyland with the nurses. At one point I saw the nurses reading her scan report, and I saw their faces fall… since G seemed fine. SHE SEEMED FINE, smiling and playing. . .

The night dragged on, I climbed into the bed with G-- she is a bed hog--and Dave stretched out on that weird PICU chair thing they have. G finally fell asleep, and I finally got up at sat by the window that overlooked the atrium. Through the atrium’s glass roof I watched the medevac copters come and go through the night. All I could do was cry, and ask God why He had abandoned us. Why was He punishing my child because of MY sins? Why?

I have panic attacks now when I see a medevac copter. Still.

Ugh.

The next day, she got wheeled off to surgery, and we finally sent home a message for our prayer group to send out: Genna had a brain tumor. Not malignant, but inoperable. Please pray. I was adamant they say it EXACTLY as I had worded it. That mattered to me. She didn’t have the same thing as Mrs. C, and I knew everyone would go right there…heck, I would.

The anesthesiologist (who looked like Santa Claus; I loved that man, he was so kind to us) told us that G did well, as they rolled her away from us she told them she was a little nervous since it was her first time . . .

That was my G.

By the time we got her back my sisters had arrived. G was inconsolable when she came out of surgery, in so much pain and so sad, just crying and crying. It was an agony on top of agony to see her like that.

After another day in the PICU G was stable, we went and saw the special neuro-ophthalmologist and we got moved to an oncology room. I was just too scared to go home, I think Dr. B had mercy and let us stay one more night. I just couldn’t believe we were in a pediatric oncology ward. 4 days earlier we were just a regular family. How could NF have done this to us?

We were like onco zombies, just shocked beyond all get out.

Eventually (there is just too much to say!), we had an “official” meeting with the oncology people, Dr. B, a social worker, some other folks. Hard questions about the future got asked. We must have looked awful, someone commented on how shocked we must be. We learned more about treatment, we learned that the “gold standard” chemo, carboplatin / vincristine would hopefully stabilize the tumor (or shrink it, my mind added), it seemed to be effective in 7 out of 10 kids, more in NF kids. . .but what if we are in the 30% , I asked. What if we are the 3 out of 10?

“We’ll cross that bridge if we get there,” Dr. B answered.

We got a bag with a little angel, a stuffed animal, a journal, a book about brain tumors (which I read in one sitting. Mistake!) , and a binder for our new onco-life.

And then they sent us home with instructions to return on September 13 to get a port put in Genna’s chest so she could start chemo.

I pushed to wait for that day. She needed to start school on the 10th. She needed to start first grade before starting chemotherapy.

Sentences like that are why I hate NF and brain tumors.

this video has an interview with the head of CHOP neuro-oncology (Dr. Phillips, who we hear is great)   AND G's neurosurgeon, Dr. Storm. And this is current, imagine how young and zen he was 9 years ago, he still looks so young...

Miracle Monday

I need to tell the story.

chemo power nap

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.

In a Bind(er)

So I have two confessions to make. One, I am addicted to office supplies. I really DO sing “It’s the Most Wonderful Time of the Year!” when Staples has their back to school sale. Having a hoard of loose leaf paper and report covers makes me feel all warm and fuzzy. Colorful paper clips, thick notebooks, binders in all sizes and colors of the rainbow, post-its…oh, the post-its…swoon!

Yes, I have a problem.

Secondly: change of anything related to my daughter’s medical routine fills me with superstitious anxiety. My daughter’s caringbridge page has the same sunshiney motif along the old school margin that it did the first day I posted. I just can’t change it. I know I should upgrade to the new format, it’s so high tech, but I can’t.

I bring the JICB (Just In Case Bag) to every single hospital visit. Going to check eyeballs? Throw the bag in the car. Scan days? Yup. Regular visits? YUP. And you know, back in December when they would not let us leave ye olde CHOP because ye olde shunt was clogged, I felt a smug satisfaction as I put on my hospital worthy pjs (ie yoga pants and a sweatshirt) and brushed my teeth, ready for my quality time with the vinyl extend-a-chair. Yeah, unexpected medical smite? Bite me! I didn’t change from MY routine. Hah!

And on every visit I lug G’s Binder O’ Medical Whatnot.

This binder was given to us in a giant Gift Bag of Yikes on our first day in the oncology inpatient unit in 2004. The binder (with handy divisions for lab results, medical expenses, current meds, and doc business cards) was plain white, and came with the Guide to Childhood Brain and Spinal Cord Tumors, a Willow Tree Angel, a journal that said “Hope” in inspirational leaning script, and probably other tchotchke I’ve since forgotten. I’m sure there was a stuffed animal for G, the 3nd of about 27,000 we’ve accrued over the years. The first was the Care Bear promised for being brave during the MRI. The second was this butt-ugly hedgehog that the child life specialist gave her during our first clinic wait. Yes, we still have it.

ANYWAY, I rifled through that bag while G slept off shunt surgery. I went through each item, nearly incoherent with grief and lack of food (I kind of didn’t eat for the first 10 days after diagnosis). I wrote all sorts of despairing things in the journal, and started trying to put questions in the binder, things like “will she lose her hair” and “will she be able to have children?” Nice questions to ask about one’s 6 year old.

When we got home, I went and got scrapbook paper and stickers and a stamp, and made a pink cover for the binder that said “Genna”. Somehow, making it cute made its purpose less menacing. How could something so pink and cutesy be a chronicle of woe?

There are e-mails in there from our first days. Scan reports from G’s one horrible biopsy time. The list of “A’s Time”, the things we would do for my son, our 9 year old left in Jersey to cope with the complete upheaval of his life. The business card holder is filled, and a few medical abstracts are stuffed in the pockets. I finally had to start taking out lab results and chemo facts each time G failed a protocol, the binder was getting too heavy to carry. Those things now FILL a crate in my closet, next to the old cassette tapes, my stamp collection from middle school, and religious art relatives gave us (and which Dave feels too guilty to donate to a yard sale). Heck, G’s on her second or third chart at the hospital, they start a new file when the first one gets to about 4 inches thick. My early notes are still in the binder, even though now I hardly write anything when we’re with the doctor. I try to sum things up when we leave, but that’s usually on a scrap of paper or a post-it. Smaller papers are easier to balance on my lap. Post-its are God’s gift to the paper obsessed.

yeah, good times from days of yore. sigh.

Anyway, I ALWAYS carry the binder. I can’t leave it at home. One time I moved it out of my normal bag, and I couldn’t find it, and I almost had a panic attack about not bringing it. It is battered, and smudged around the edges, and generally ignored when we are AT Club CHOPARONI. But it comes with us.

So two weeks ago we start up chemo #5. Our nurse, C, has been with us since the famous Freakish Port Break of 2005 (when the port broke and floated into G’s pulmonary artery. Good times). She said, “Hey, did you get a binder?”

So I answered, why yes, I got a binder back in ’04, and HERE IT IS, as I dug into my massive bag of complete over-preparation (Tide pen? Got it! Cell phone? Got it! Sewing project as yet unstarted? Got it! Tissues? Got ‘em! Inflatable raft? Ok, maybe not that.  Large print word find for G in case we get stuck a long time? Got it! And yes, one pocket is reserved for Cadbury mini-eggs). Yes, I have a binder in here too!

But no, apparently CHOP got some kind of massive grant, and there are Sparkly New Binders with a cloth cover and a carry strap and all sorts of CHOP specific info and fabulosity galore. And C was going to get one for Me.

I could not say no, this was like the Mother of All Office Supplies, and I could pick the color (duh, Pink for G) and it can be lugged outside of my increasingly overloaded scrapbooking bag that I bought simply to be a hospital bag back during stable days.

And Lo, C brought me the glorified Trapper Keeper binder thing with the handy carrying strap and the CHOP logo stamped on the front, and I was well pleased.

But…

Sigh.

I look at the old binder, and think of all it has come through with us. I remember making that cover, defiantly fighting back tears of despair as I stuck those cute letter stickers on the front. That binder held so much of our early journey. Will the fancy new binder even work as well?

I fully acknowledge the patheticness of this.

A lot of the cancer info in it I don’t need. Been there, done that. I have to create a section for labs (after Transfusionfest ’06 I am meticulous about tracking labs). I need to decide then will I be carrying too much if I lug the new pink binder AND my massive many-pocketed scrapbooking-turned-hospital-bag? I need the bag, it’s covered with pins…

   *My Wall of Courage pins, one for my 8 year survivor and one for my 4 year survivor, and one that states “I’m Wearing Gray for My Daughter”.

*My Yetifunk pins, commemorating my brother’s ultra-marathoning for a cure for NF.

*A St. Baldrick’s pin for my friends, the 46 Mommas

*A Friends of Jaclyn pin—for my G, adopted by RU LAX.

* A 52 bELieve pin for Eric LeGrand --injured RU football player, ultimate Hopemeister.

*Sometimes a bee pin for the Beez Foundation (a pediatric brain tumor group), but that pin often falls off.

* A festive, rainbow colored “Brain Tumors Suck!” pin, just because.

* And finally, a gray ribbon “No One Fights Alone”

Maybe I can stick pins on the binder, but I’m not sure.

I am having a moment of self-realization as I type… I am a hoarder of motivational pins too, apparently...

So I’m in a bind. Which addiction will win out? The snazzy binder? The irrational anxiety about changing up my old binder?

Maybe chemo #5 merits a new binder. God knows the festive new hot pink insert folder for Sorafenib didn’t do SQUAT in the old binder…even the special addition folder for the daily dosing diary, fully decorated with special GIRAFFE STICKERS DID NOT DO SQUAT. Hmph!

ok, so the hearts all fell off and THEN we added giraffes. Meh. The desserts stayed.
And this is one of the silly, odd, exasperating side effects of brain tumor in THIS mom’s brain…the complete inability to make a simple decision about which office supply should be the thing I have panic attacks about leaving at home. But really, I guess that’s better than panicking about the info INSIDE the binder, right?

The new one did come with extra little sticky divider things that I can write on…ooooh…

oooh, extra sticky divider thingies...
Either way, I need to figure it out before Dose Dos, tomorrow. Hm.
Maybe I can write pros and cons out on some post-its…