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?

One Year and a Frightful Day to Scan

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 12

We hit the one year mark.

Part of me couldn’t believe it had been a year. I struggled to wrap my brain around how our life had changed, how so many people had been SO kind to us…we had never been on the receiving end of that kind of support, we were completely overwhelmed by the support and kindness of so many people. I wrote a long (surprise!) post reflecting on how many people had helped us, how I had suddenly learned to be assertive to protect my G…and how I would NEVER forget the Just In Case bag again.

The love and kindness we experienced are two of the beautiful things amidst the wasteland of our bt/nf journey, and continue to be so to this day. And I still bring a bag every time we go to CHOP.

G and her goddess doc (and me), September 2005.
 Her doc and I matched that day, which was kind of funny. We still do, rather often. Strange.

Anyway, summer wound down, and over Labor Day we decided to bring G to a priest who had a healing ministry.

I had refused EVERY such thing like this before this date. I knew G believed with all her heart that God would make her better. I figured if He wanted to we didn’t need to visit a limb of a medieval saint or something. It made me angry, it just seemed presumptuous or something; I love a lot of devotional stuff, but this made me mad.

But this priest from New Zealand was coming to our area, and I agreed that we could go see him. Following so close on the heels of our one year smite-aversary, this was a tough call, but G was totally into it (she LOVED praying stuff), so we went.

I still had trouble with God. But Fr. Rea was pretty awesome, so completely humble and normal. He simply prayed with us. A simple, simple, quiet set of words that only we could hear, asking God for healing for G. And while G did not get healed there (understatement of century), MY heart got healed that night. I know that may sound crazy to people, but I stand by it. After that night, for the first time in a year, I knew it wasn’t my fault that G was sick. Or maybe, more accurately, I finally believed that G’s illness was not God’s punishment on me for failing and failing. I knew it wasn’t my fault. The freedom in that moment, a moment which grew in the weeks following Fr. Rea’s visit…it’s hard to describe unless you have felt crushed by cosmic smite.

And G started second grade, replete with new challenges (sigh. I have some blazingly ranting posts about the trials of second grade social life, challenges with teachers, and the perils of the bus --brain tumor and nf school issues can be pretty epic, regardless of tumor type, from what I’ve observed, G isn’t alone in this), and we cruised on. She had been stable since that bad scan in November of 2004, if she was still stable at our Halloween scan, we would stop chemo.

We were all just so tired at this point. Some rounds G did better than others, sometimes she decided She Was Done With Chemo (problematic when you um, aren’t done), we were just tired.

G was growing alarmingly fast, some of that seemed to be tumor related, but her counts were good and she loved telling everyone about her upcoming Make A Wish trip…which we finally got on the calendar for March of 2006. We figured by then G would be feeling better, if in fact we ended chemo in October.

the last temozolomide chart

Sunday, October 16, 2005 9:21 PM CDT

Hi, all.

Round 12 is done.

I never thought I’d say that. We made it through 12 rounds of temozolomide.

Genna was a superstar this round. She gulped the pills so fast some nights I had to do the “God bless Justis, Dakota, James, Ryan, Kyle, Jed, Jordan…” for her (girls were on the other one—so Hadley and Hailey and Caden got prayers, too!). It’s our cutest chart yet (a pumpkin patch with trick-or-treaters), and Genna had no real side effects except CRABBINESS and tiredness— …

So this round is done. Who knows what the future will bring?

Yesterday I got to Andrew’s baseball game, and I could see Dave’s face…the “Oh, no, I’m trying to explain the Story of Genna” face. Apparently Genna was telling all the moms at practice about her Make a Wish trip…and someone asked Dave. Genna had said "Make a Wish came to my house, but I don't know what for." Funny, right? For as talkative as I am online, I don’t chat about this stuff to random everybody. Dave was very relieved when I showed up…and the moms were so sweet about everything. They are really lovely people. The one poor mom (the coach’s wife) was shaking after I gave her details…Genna plays with her little girls each game, our boys were on the same team when I was pregnant with Rosie...I felt bad. I’m used to saying the clinical stuff…but I’m getting weepy now, I don’t know why…

I think my pre-MRI psychosis is beginning…



As a note for brain tumor awareness, all but one of the children in G’s chemo list of prayers have passed away. All. But. One.

There are no words for that.

I felt bad about this post a day later (long school vent included in it), so the next day I related this story…which kind of captures G’s way of the world:

Genna had "writing center" at school (an activity center in the classroom) so she made cards for all of us...well, wrote notes on donated cards. So I got a "thinking of you" card, Andrew & Rosie got festive pictures/blank inside cards...and she wrote Dave a sympathy card. "Earth has no sorrow heaven can not heal" on the outside, "thinking of you at this difficult time" on the inside...and a note from G about how she's sorry work is so hard for Daddy right now. We pretty much fell apart laughing. You know Daddy's job schedule is bad when the 7 year old happily chooses a sympathy card...

And then, on Halloween, we scanned. The day before the scan we brought the kids to the Phillies/CHOP Halloween party, they had a great time meeting the Philly Phanatic and playing silly games, then we sent Andrew home and did scan day on Monday.

Life Lesson: Don’t Scan on Halloween. You have to know that's not going to end well.

Monday, October 31, 2005 8:20 PM CST

Hi, all.

No miracle for us today.

For the record, the tumors are stable. Genna knows the tumors are stable. She is satisfied with this. And growth hormone levels are ok…on the high side of normal, but still normal. She’s not off the charts or anything, so apparently I’m supposed to stop worrying. Genna knows her tumors are stable. This is what she and Andrew know, please remember this if you continue reading.

But…

Don’t you love the “but”? It’s like the scary music in a movie, just before the clueless coed walks through the door of doom. This is sort of the abandon all hope ye who read this warning…well, not all hope, that’s me being melodramatic, but let’s just say when your neuro-oncologist says after talking to the head radiologist that there are some areas of concern, this isn’t reason to sing happy songs.

Simply, some “flecks” show up on the scan that have not appeared before. Is this because the post-shunt-revision ventricles are so much smaller now we can see these previously obscured enhanced areas? Perhaps. Is it a weird NF enhancement thing? Maybe. Is it an area of new (inoperable) growth within the brainstem? Well…

It gave Dr. B pause. Enough said.

So the tumor board will confer about what this may/could mean on Wednesday, and Dr. B will call me. …

Not doing so hot right now, so please forgive me if I hide a bit. I feel a little bit sucker punched…but I knew I wasn’t worried enough this time. I SWEAR, results almost directly conversely correlate to my level of worry.

I did mention to Dr. B that "benign brain tumor" is a complete misnomer. There is NOTHING benign about this except the rate of growth. Which is a big deal, but benign doesn't mean no problemo. Benign doesn't mean we can ignore it. Benign stinks too. Dr. B agreed, kind of sadly.

When Dr. B called, we learned that yes, those spots were new tumor in Genna’s brainstem. And just like that, we were back at square one again.

Stability, Wishes, and a Fail

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 11

With our first stable scan ever, we settled into something of a routine. Once a month for 5 days Genna would take her pills…the chemo got harder as we went along ( chemo has a cumulative effect, over time it hits the system harder. Not necessarily the TUMOR, but the rest of the body starts to feel the effects more profoundly as time progresses). G struggled with the pills, we had elaborate cheers (after a few months Rosie became the cheering squad, her chubby not quite 3 year old self waving her arms and saying “Go, Genna!” until all 5 pills were swallowed each night), we used bribery (a Happy Meal at the end of each round), we created (ok, I created) elaborate sticker charts.

G got through the rest of first grade, we survived it, her eyes seemed to be improving, things were generally ok.

In May we had a SECOND stable scan, and at some point after that Dr. B asked if I had contacted Make a Wish yet.

Um, no.

She looked at me, and I sort of plaintively said, “no, that’s for sick kids”.

To her credit, our doctor did NOT facepalm on the spot. But she told me to call.

This is exhibit 1A in “Denial is NOT just a River In Egypt—Oncostyle”. Meh.

See, NF brain tumors AREN’T cancer, usually (although they can be). And G’s tumors were low grade, and low grade means not as bad, right? So she was on chemo #2, so she had vision loss, so we had created a network of school support, so she had no energy, she wasn’t as sick as a Make a Wish kid.

Sigh.

I broached the idea of a wish to G, she told me she would like a Care Bear. Since at that point we had 57 Care Bears in the house, I told her to think bigger. I got her a dvd to show her what Disney World was (Dr. B suggested we show her something that would be good for all 3 kids, since G was thinking stuffed animal and our other kids were having such a hard time, too). After a week or so of watching that, etc., Genna came to Announce Her Wish to me.

“I want to go to Disney World!” she said.                                         

strategic sticker chart design

Woo!

“On a train!”

What? I explained I didn’t know if Make a Wish would DO that, taking a train to Florida from NJ was expensive and long and yikes. Apparently Genna was petrified of flying, which I didn’t know (and I swear she had NEVER heard me be phobic, since I am a Big Fan of Terra Firma).

“Well,” she said, very seriously, after thinking a moment, “then I guess we could go to Philly instead.”

I told her I would ask the MAW people about the train. Ahem.

G’s 7th birthday was a joy, birthdays are very meaningful when you spend a lot of time in an oncology ward, and we have a chemo chart celebrating the occasion.

 Just a few weeks after G’s birthday, almost exactly a year after the fateful eye check, we had another scan, and things were stable AGAIN! The ventricles were a little enlarged, but after some checking folks decided G was ok.

Woo!

In the days following the scan, G complained a few times of having a headache. To clarify, this meant she mentioned “hey, I think my head hurts!” on 3 occasions, and then 10 minutes later would say, “hey! My head doesn’t hurt anymore!” It was not super dramatic.

Except that G NEVER had headaches. Ever. Not before diagnosis, not with tumor growth, never.

So, being a dutiful and scrupulous mother, and being really petrified of missing something catastrophic again, I mentioned the headaches to Dr. B at our visit the week after the scan.

Sigh.

After a few phone calls, some poking and prodding, and a singularly unpleasant test that involved putting a giant (I mean GIANT) needle in G’s head (during which she screamed and cried for Daddy, who was at work), we were met with a solemn row of Dr. B, neurosurgery resident, and nurse Mindy filing into our room where we waited.

Solemn row of multiple medical people is NEVER GOOD.

G had shunt failure.

We both kind of lost it, we weren’t allowed to go home, G had to have surgery the next morning (it was late in the day at this point, and while shunt failure can be life threatening, G’s was caught early. Yay me, sigh) …but just having to stay unexpectedly was so demoralizing, and for the first (and last) time I didn’t have a Just In Case bag with me…and the hospital was FREEZING, it was August and the ac was cranked up so the clinic was about 40 degrees.

G was crying, I was crying (breaking my "do not cry at CHOP rule"), Mindy made G a card, the child life specialist gave G a stuffed dog (stuffed animal #4279), we just huddled miserably in a corner until a space in the PICU would be ready.

Those unexpected having to stays are brutal on everyone in the family. THOSE are the times G remembers from these early days.

Several hours later Dave arrived with supplies, G had surgery the next day (it wasn’t nearly as bad as the first shunt surgery), and we got home just in time for our first magical MAW meeting.

I felt a little bad, G was a WRECK at the meeting with the wish granters (can I blame her, one day after shunt surgery?) and Rosie was in rare cuteness form, the ladies were smitten with my baby…but they told G that she was going to go to Disney on a train.

Never, ever underestimate the power of something to look forward to. We would need that and more in the months to come…

Chemo #2 & Our First Sign of Hope

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.

This one is Really long, I am sorry! But full of pictures, so...yeah.
May 10
So we were back at square one.

And really, we only had a few good-ish options.

NF increases the risk for secondary malignancies (ie more cancer later) that is already inherent to an awful lot of cancer treatments (or in our case, low grade brain tumor treatments). So while in 2004 a lot of kids went to a protocol called TPCV after carb/vin failed (we were not alone in that miserable 3 out of 10), for NF kids that was generally a protocol to avoid. Instead our doc offered Temodar (or temozolomide, the official name), whomping pills that G could take at home, 5 pills in a row. Of course she didn’t know HOW to swallow pills, but apparently we could open them and mix them with apple sauce or apple juice and she could take them that way.

We had gotten to be pros at medications. G had sticker charts galore for her peaceful meds (the medicine that literally gave our child back to us), her Bactrim (an antibiotic kids on chemo take 2x a week to prevent a particular type of pneumonia) and her elavil, which weirdly helped with her middle of the night feeling ugh. Apparently it was an antidepressant in the 70s, but docs found when using it with breast cancer patients it alleviated other symptoms of chemo yuck. It truly helped Genna so much.

not sure why she suddenly decided to write I DID IT! instead of stickers,
but you do not mess with a kid and her sticker chart.

Do you see why I tend to be a tad yikes when folks say “all medicine is bad”? I can only see my G rewalking sidewalks or crying in the night when they say that. But I digress…

Anyway, with temodar we’d have no more weekly trips to CHOP, only on days 21 and 28 of the 28 day cycle. Then she would start 5 days of pills again. We would give her zofran at home (the anti-nausea meds) . I took copious notes and tried to regroup, because honestly…

I was terrified. We had to learn a whole new pile of what not. I had JUST figured out the whole carb/vin iv chemo thing. I was so scared to be at home for a whole 3 weeks without any actual oncology people telling us what to do. I am inherently non-medical!

And Dave was about out of sick days/personal days, I would be starting to schlep to Philly with G by myself, which scared the wahoozies out of me.

But we made up a cheer…you can, in fact, cheer T-E-MOZ! O-LO-MIDE! Te-mo-zolomide ! Tehe-mo-zolomide! So we did. This helped, weirdly.

getting the Christmas tree. I can't believe I remembered to take a picture and act festive.

We did learn a few important things.

One, Temozolomide is toxic, so I had to put on gloves and open the capsules in the bathroom, where nothing else could be contaminated (ie I could wipe everything down.) This is a hard thing to reconcile, that I am gloving up to give my child poison, a poison we hope will save her.

Two, Temozolomide tastes TERRIBLE. The chemo nights could take an hour of me sitting in the bathroom with G, begging her, making up songs, singing people’s names, praying for people we knew like Mrs. C, saying “let’s see if you can drink a little more before Daddy comes in! I think I hear him! Hurry hurry, I think he is coming!” , cajoling, occasionally getting impatient, just desperately wishing it was over…and then hurrying G to bed so she wouldn’t throw up.

Three, even a visually impaired kid can see the white flecks of chemo powder floating in her apple juice. Yes.

Eventually G did start learning to swallow the pills, after I caught her pouring her liquid “peaceful medicine” down the sink we switched all her meds over. (I would close my eyes-ish so she could “surprise me”. Well, yes, I was surprised by THAT!). We used tiny pieces of gummy worms and tiny M&Ms to teach her how to swallow pills (thanks, Child Life Specialists for that tip!), and our begging then became, “it’s just a gummy worm! IT”S JUST A GUMMY WORM!” at increasing volume while trying to get her to swallow those whomping capsules.

And we made Epic Sticker Charts. With the popularity of scrapbooking, I would go buy the Biggest Stickers I could, and make elaborate charts, and feel like we had a speck of control.

Genna's First Epic Sticker Chart. I was a beginner at this point. Wait for it.

bonus points if you figure out the spoiler this picture provides.

 G had a spinal scan right before Christmas to rule out spinal tumors (since her low grade tumors in her brain were now plural), that was CLEAR. Normal spine. I almost couldn’t wrap MY brain around that….a normal scan? Whaaaaaaaat?

But yay.

We kept going.

Right after Christmas (I think) I found an online support group, and finally found people who knew this awful parallel universe. I am so grateful for those parents, those parents who STILL carry me.

A group of ladies who were friends of my parents started coming to school every day—as volunteers!-- to help Genna one on one. Every day. For months. Those ladies were so faithful, they carried Genna through first grade. Our little Catholic school had no extra resources, and our public school would have nothing to do with us if G wasn’t enrolled there full time…but the public school lady and I both agreed that moving G to a new school in the midst of all this would crush her. She felt safe in her school, so we would make it work. Those volunteer ladies made it work for us.

I am so grateful for those ladies.

we had so many people to thank...this was actually for my writing group, who had sent our family a basket (and had never met G, but this is one of the only pictures I have of her in that first grade uniform).
She is so cute.

3 months went by in a flash, I was consumed by trying to get G some services from our state’s Commission for the Blind and Visually Impaired (yes, I cried when I got the name of that wonderful group). Thanks to a mighty, mighty advocate from the commission we managed to convince our local school district to fund G’s Braille instruction. The Commission needed the funding to come from the district…after much drama, a Brailler arrived at our house, and we got to start living out my long-ago thought of learning Braille.

Braille is really cool…really hard, but so cool. Braille & the Commission gave us hope.

Well before that late February scan day I was sick with worry; at this point MRI only equaled catastrophe for us…but this time, in February 2005…well, it went something like this…

 Wednesday, February 23, 2005 7:03 PM CST

THE TUMOR HAS STOPPED GROWING!

THE TUMOR IS COMPLETELY STABLE!

IN THE WORDS OF DR. BELASCO: "THIS IS GREAT NEWS!!!!!!!!!"

And now I can breathe again.

We had a preliminary report yesterday that things looked the same, but that came in the same sentence as "the ventricles look larger". For anyone not conversant in brain stuff (that would include me as of a few months ago), if you have a vp shunt this can mean BIG TROUBLE--but Dr. Storm & another colleague from neurosurgery checked out G's scans, and the colleague came down & checked the shunt with his fingers (a low tech but impressive feat) and they think she's ok. We'll move up the eye check just as a backup. Genna was a little disappointed that her beloved Dr. Storm couldn't come down, but he was actually in surgery.

Dave said when Dr. B started talking about ventricles I turned white as a sheet & he thought I was going to be sick...someday I'm going to write a masterful piece on the physiological manifestations of terror. I felt like I had on day 2 of this journey, a place I'd rather not revisit. If the shunt was malfunctioning, we would have been in surgery today.

So I didn't know whether to be happy, disappointed, anxious, let down.....I knew it wasn't a horror show like in November (I asked Dr. B, "last time could you see it had grown? (with the naked eye, not measured by the radiologist) and she answered emphatically "Yes" so this had to be not that bad), but was it good? I almost posted last night, but I didn't know what to say.

From the scans we saw, the tumor was readily visible. No one shouted "egads! It's gone!" ; no complete miracle...I didn't know until talking to Dr. B at 6:30 pm tonight that YES WE CAN REJOICE!!! The chemo is working…

...So we're through another moment. We still have a very long road ahead, but at least we can see for the next 3 months. We could not have made it this far without you all right along with us. Thank you.

I need to go make another sticker chart...

(which was the one with the pizzas. If you guessed THAT, go get yourself a cookie!)

The temozolomide held the tumor steady, and we finally experienced the bliss of stable. We could keep going. It wasn’t going to be easy, but temozolomide was SO much better on G than the carb/vin. Yes, she was exhausted. Yes, she hated the pills. But her counts were solid, and her VISION SEEMED A LITTLE BETTER!
I even felt happy occasionally…it was odd, and unfamiliar, and weird, but in between those chemo rounds, we had some happy.

And we were only just beginning.

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

The First Worst Day Ever, part I

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 5

This one might be a little long. Ok, it IS long. sigh. And I don't think there will be pictures.

G’s eye check on August 3 was really not particularly dramatic.  She did have some issue seeing some of the letters on the chart, but I was not super concerned. I got glasses in kindergarten, I figured maybe she was nearsighted too, even though Dr. C said that G’s problem didn’t seem correctable. The vision issue was slight (not even 20/50), but Dr. C couldn’t fix it with those little lensy things she had, so she said we probably should get an MRI.

You would think that somewhere some warning bell would have gone off in my head, but she didn’t seem worried. Heck, I didn’t feel all that worried, I knew maybe we’d have some kind of optic issue but I wasn’t that worried.

No, I am not the sharpest crayon in the box all the time.

Dave & I were set to go away for a 10^th anniversary trip to Cape Cod the week after G’s eye check, so I set the MRI up for August 30, after we came back but before school started.  I didn’t want G to miss any of the beginning of first grade. 

Our trip was awesome. Just amazing, we loved everything, we talked about bringing the kids to Cape Cod, we talked about what we wanted for our family in the next 5 years or so, we made plans and dreams and joys together in that magical week.

And God laughed, not the nice kind of laugh.

We came home refreshed and full of renewed energy for parenthood and life and mayhem.  I assembled the school supplies the kids would need, got all the uniforms ready, just prepped for fall.

Monday, August 30, 2004, we brought G for her MRI. We had promised her Burger King after the scan, knowing that she had to fast before sedation.  Once again she fought the meds, but then she slipped off to sleep and the techs wheeled her away. 

Dave and I sat in the waiting room, he went to get us coffee while I tried to block out the daytime tv blaring over my head.  I think Bill Cosby was on some talk show, which was entertaining for a moment.  A dad and son came in to get the son’s leg MRI-d after a sport injury.  I wrote more melodramatic poetry about how scary it was to be back in this spot again, waiting for a scan.

Finally G was done, they gave her back to us, she woke up, and we went off to Burger King.

I think now about those techs, those people who saw the scan, and then gave my 6 year old curly haired diva G back to us. I think of those folks, and I think of  how much that day must have sucked for them.  They knew. We didn't, and they knew what was going to happen to us and they couldn't tell us or do anything...I feel so bad for them.

As I type this, G just came over to give me a “homework stress” hug.  I needed a hug right now, too.

We got the requisite happy meal and then Dave dropped us off at home while he went back to work.  I told G when she was less post-sedation we’d get her the promised Care Bear. Hey, bribery should never be underrated.   The kids were playing and watching PBS or something, I don’t even know, I just know it was warm and sunny and I had the windows open.

The phone rang around 2:30 or so, it was the eye doctor.

Wow, that was so fast! I was so relieved, I thought I’d have to wait a day or two for results.

Foolish, foolish mortal. Oh, stupid girl.

 MEDICAL LIFE LESSON ALERT:  Phone calls an hour after getting home from a medical test of any kind ARE ALWAYS BAD. EPICALLY BAD. SUPER BAD.  AWOOOOOGA! BAD IN BIGGER THAN CAPITAL LETTERS BAD.

The eye doc told me that I needed to call our pediatrician, the scan had showed something, a lesion,  there was new medicine called temodar that you could do at home that could take care of things, this mass, but I should call our pediatrician, I needed to call him right away, he knew I’d be calling (ie so I would be able to break through the Great Wall of China that is the pediatrician’s reception staff) and I needed to call right away.

I was so grateful for the call. “Thank you SO MUCH for calling so fast, I really thought I’d have to wait, “ I told her, so relieved. 

I cannot even fathom what she thought, she just told me no problem, make sure I call the pediatrician RIGHT AWAY.

I called Dave first, told him that there was some kind of lesion but I just had to call our pediatrician and he would give me the fuller report.  Dr. C hadn’t made it seem like a big deal, so I would call and let Dave know what the doc said. Dave was cool with that, so was I.

Deep breath.

So I dialed The Pediatric Center, and SO WEIRD, the nurse answered and got all crazy efficient and put me RIGHT THROUGH to the doctor. I couldn’t believe it! Right through!

Yeah.

MEDICAL LIFE LESSON NUMERO DOS: IF THEY PUT YOU RIGHT THROUGH TO THE HEAD OF THE PEDIATRIC PRACTICE INSTANTLY WITHOUT ANY TIME ON HOLD THAT IS NEVER A GOOD THING. EVER. NOT EVER.

“So Dr. C told me to call you…” I said.

And then my world crumbled.  Like, “things fall apart/the centre cannot hold/mere anarchy is loosed upon the world/the blood-dimmed tide is loosed/and everywhere, the ceremony of innocence is drowned” . . .

And that is not melodrama, thank you, Yeats. That was how it was.  :(


as a side note, tomorrow is once again an MRI day for Genna. A sign of hope, nearly 9 years later we still have these days. But oh they are so hard, and the stakes are so high. Please pray for us.