Wednesday, May 29, 2013

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.


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?

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