Me Vs. ChocoBunny

So on Saturday, I made a vaguely top secret trek to the best chocolate place in Jersey—the Fudge Shoppe in Flemington. 

(As soon as I walked in the door at home holding a plain, unmarked brown bag, survivor kid said “HEY, YOU WENT TO THE FUDGE SHOPPE?” Ahem. Top Secret. Ish.)

When my survivor kid was in the early years of her journey, we drove by the little barn-like building that says FUDGE in giant letters every time we drove to Philadelphia for treatment or scans or oncological whatnots.  One day we stopped in—and the delightful older gentleman who founded this store offered us free samples fresh fruit covered in chocolate, and we were instant converts to the Church of Fudge Shoppe.

As part of my radical plan to “Take Back April 5”, I thought about going back to Flemington (a 35 minute drive) to get the darn giant chocolate rabbit that I had vowed to get if the chemo trial was not a fail.  But the day was busy, and a special trip for something way too large for a random day just didn’t fit my schedule.  But the idea stayed with me during my pre-Easter pilgrimage yesterday…

And there, now within reach (not on top of a high shelf, as it used to be displayed 5 years ago), was the giant ChocoBunny. That rabbit is magnificent, literally 3 feet of molded milk chocolate old school awesomeness, made with a lot of love.  Decorated with buttercream accents and candies attached to the bunny’s basket, the rabbit stood sentinel over all the smaller chocobunnies and crosses and dinosaurs (yes), Easter pops, and filled eggs of every variety. 

For five years, this beautiful ChocoBunny stood as a sad symbol of our chemo defeat.

But yesterday, as I stood in front of ChocoBunny, clutching my basket already too full of treats (life lesson, DON’T go to the Fudge Shoppe before breakfast), I just thought, "wow, that is pretty awesome to behold, but at $250 it is um, just nice to behold". 

(Five years ago I had no clue how much this edible art COST!! YIKES! But probably still worth it.)

Thus I continued choosing regular Easter hoorays for my family while humming a happy little hum.

Like these. These are from the Fudge Shoppe Webpage.
They are so delicious. Sooooooo delicious.

Freedom!

I am still a bit agog at the grace of this moment, "getting over" Sorafenib. (As long as no doc says something stupid like, "oh, we knew there were problems with that study". Just not that one again.*cough. That was not a great moment.) But really—FREEDOM!

Agog.

I didn’t need the massive ChocoBunny to prove that the disastrous trial is just a memory.

SAY WHAT, WILLIS?

Truthfully, the free sample of choco-covered pineapple—the pathway to my original conversion to this chocoshop-- admittedly did not hurt my newfound zen.

So in this step in my attempts to keep Movin’ Right Along, it’s Me- 1, Random Bad Associations -0. And since EVERYONE in my family is going to end up with Fudge Shoppe chocolate, it’s really a win for all.

And a win that involves really good chocolate from a little family business—THAT is a win indeed. :)

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…

Three out of Ten

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.


Today's side request: please send every good thought /prayer/vibe of strength to our friend Caitlin, who got the worst news possible today on her MRI. Caitlin was at onco camp with my girls last year, and visited G in the day hospital about 4 weeks ago. Our hearts are broken again today because of brain tumors.

May 9

It was almost MRI day, and G was losing vision.


On Caringbridge I said it this way:

I'm really too upset to say much right now other than please pray. We're trying to figure out what to do with this--we don't see the neuro-opth. (see, I couldn’t spell it then, either) until Nov. 29, but now I'm really worried about what the MRI is going to show. I'm worried that I've been letting Genna cross the street alone--she's so careful about looking both ways, but I'm not sure that "looking" is particularly useful. Getting on the bus each morning for school has become a challenge, as she frantically looks for a seat while the bigger kids won't budge (we asked the neighbors today to help us with that, so Genna can get on the bus first).

Genna was very pleased that she saw the first 2 lines on the nurse's eye test (which is exactly what alarmed the nurse!). She is so pale, and tired, and frustrated with school--maybe because she can't see? We had no idea it was so bad.

please pray for us. this is almost as bad as the initial diagnosis for me.


It was a hard time, reading through those early caringbridge entries is so weird.

Right after this day, we finally met another kid with NF, a teen in our church who we had been praying for but never met. Sandra was battling sarcoma, a very rare NF manifestation. G was very pleased to meet a new friend.

Scan day loomed, the Monday after Thanksgiving (where G mooched Grandma into making her pizza, G didn’t LIKE turkey), I was so scared and praying that things would be ok, but G’s deteriorating vision scared me so badly, despite our doc telling us that didn’t necessarily mean the tumor was worse.

We headed to Philly on the 29th, got G’s scan, and headed home. Nobody called that day, so I figured maybe we weren’t smote. I didn’t start calling our doctor until the next morning, and it took me all day to get through (the nurse was NOT AMUSED that I kept calling, and I was so non-assertive then,I just apologized and carried the phone with me the rest of the day). Finally Dr. B called me.

The chemo had failed.

 The tumor had grown larger.

All I could whisper was, “of course it did. Of course it did.” We were the 3 out of 10 that carb/vin doesn't work for. We had come to THAT bridge.

Not only had the tumor not shrunk or stabilized, it had grown. And a teeny speck of potential tumor spotted on the original scan was now a centimeter sized blob in G’s cerebellum.

I just remember crying with my mother, crying and crying, how could it not work? Those months of G feeling miserable were all wasted…

This was all I could say

Tuesday, November 30, 2004 2:53 PM CST

Hi everybody.

It's not working. The chemo is not working. The tumor is growing, making its inexorable progress through my little girl.

I don't really know what to say. Right now I have more questions than answers. Next Monday I will meet with the doctor to discuss what chemo we are switching to. There are a few options, but the risk of secondary leukemia is higher....but radiation and surgery are really not options.

Genna's only question was "will it hurt?" when told she would need new medicine. I told her no. She was fine then, matter of fact about it.

Please pray for us extra today. Please don't take it personally if I don't answer e-mails or calls.

Thank you,

And then, while I hid from humanity, we had to figure out what to do.