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.

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.

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