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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