The First Worst Day Ever, Part II

May 6

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.

As a side note before this hard post, today Genna had an MRI that was stable. Her protein levels were off, so no chemo today, but we got some hope today.  This is the first time we've gotten to the year mark on chemo without progression (or such toxicity that we had to stop). Hope.

the original MRI scheduled. Yes, I am an onco hoarder. Whatever.

“Genna has massive hydrocephalus, fluid on her brain”, the doctor was explaining to me. “She has brain tumors, large brain tumors that are blocking the flow of cerebral spinal fluid. She needs to get to a hospital NOW.”

Um, say WHAT, Willis?

Tumors? What the…I felt like the floor was literally collapsing under my feet, I had run upstairs, away from my noisy children , to hear the doctor better. He explained G had tumor, lots of tumor. Apparently “lesion” said by eye doctor is euphemism for “crazy gigantic tumor but I can’t bear to tell you so call your doctor”.

“Wait, so is this life threatening?” I finally squeaked out.

“Yes,” he answered. “She needs to get to Columbia Presbyterian tonight.”

I just… I had no words, I just , my brain just shut. Down. Completely. I kept asking the doctor to repeat things, then the nurse, then the doctor again, I had to call New York, I was supposed to go to a hospital in Manhattan? Somewhere in Manhattan? I am phobic about driving on the highway or ordering at the deli counter, Manhattan? G seemed FINE, how could this be? I was trying to write words on little pieces of paper.

I still have that paper somewhere, that shocked scribble of words.

patriotic scraps of paper. I found them in my original onco binder. sigh.

Life threatening?

But optic glioma aren’t life threatening, THAT IS WHAT ALL THE NF LITERATURE SAID.

The NF literature neglected to mention that a big enough tumor pushing back along the optic tract can block the ventricles that drain cerebral spinal fluid and cause life threatening hydrocephalus. Details matter, people.

The next few hours were a disaster of confusion, I know I called Dave, I know my friend Jen brought us a chicken divan (she was one of the few folks who knew about G’s NF, she had offered to bring us dinner on MRI day), I whispered to her “PRAY FOR US. PRAY HARD” as I held the phone to my ear, trying to work out details and doctors.

At certain points I remember just weeping and asking the nurse to please just tell us what to do. Just tell us what to do…

…Because the doc at Columbia Presbyterian didn’t take our insurance. A nurse there suggested we come in through the ER with a “headache”, then they would HAVE to treat us, but she had never met Genna, who had never had a headache. Massive tumor, massive hydrocephalus, NOT one headache or bout of nausea EVER. Not one.

Part of G’s ferocious diva-ness was the compulsion to INSIST UPON TRUTHFULNESS. If we went to an ER in another state saying G had a headache, I KNEW, I knew she’d be yelling, “MOM! I DON’T HAVE A HEADACHE! WHY ARE YOU SAYING I HAVE A HEADACHE? I HAVE NO HEADACHE! MOM! MOMMY! MOM! HEY, MOM! I DON’T HAVE A HEADACHE!”. Like that. And it seemed karmically ill-advised to try and get brain surgery under false pretenses.

By now it was 5 o’clock, offices were closing, I was in a panic, I didn’t know what to do. Finally our docs arranged for us to go to the Children’s Hospital of Philadelphia, they set up an appointment with a neurosurgeon (I have his name and where to park on that scrap of paper), they told us it was probably ok to wait until morning. Maybe. Possibly.

I will say that at 10 pm the neurosurgeon from Columbia Presbyterian called to make sure we were taken care of. I have always appreciated that, it wasn’t his fault that they didn’t take our insurance.

The rest of that evening is a blur. We were supposed to start construction at our house the next day, to convert our garage into a playroom for the kids. We were supposed to be getting ready for a lazy Labor Day weekend.

We were not supposed to be wondering if our daughter would live.

That night, Dave and I just laid in bed and cried. We cried and held each other and grieved and panicked and despaired for our little girl, our diva queen goddess princess Genna.

The next morning we packed some bags (we didn’t know what to expect, how do you pack for “drive to random hospital in another state to see what the hell is going on in your little girl’s brain”?), kissed my 9 year old and my 2 year old goodbye, and drove 81 miles southwest, to the City of Brotherly Love…

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.

Everything we Need to Know about Brain Tumors We Somehow Missed in Kindergarten

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 4


Kindergarten was a challenge for Genna. She LOVED going. She loved her uniform, seeing her teacher, coloring pictures, but the academic part was challenging. Genna was impulsive, speedy, emotional, she struggled with fine motor skills in a way that her brother had not. Don’t get me wrong, her brother’s first week of kindergarten was marked by a call from his teacher telling me that “he was quite an entertainer”, which is teacher code for “your child is constantly talking, joking, falling out of his desk, making vulgar noises, and generally distracting everyone around him as much as possible” . But my son loved letters and numbers and had no problem with schoolwork when he wasn’t trying to be a 5 year old Rodney Dangerfield.

Genna struggled with letters and numbers and just kind of a lot of things, enough that her teacher and I agreed I should talk to someone. Our local school district would have nothing to do with us since Genna goes to Catholic school, so we went back to the neurologist who sent us for that first MRI. After hours of expensive testing and a ridiculous waiting room wait (a tiny room full of wailing children), the doc said maybe we should have her tested.

You can read it twice, it still makes no sense. I thought that’s what he was DOING, testing her…

I was young, and kind of uh, ok? and frustrated and unsure of what to do, and I didn’t push the issue, except to run around in circles with our school district some more. Something just wasn’t quite right. . .

Easter, 2004 . I went and dug out pictures, and hey, I used to scrapbook things.
 I wish I still did that, I love how these pages look.
G's face is a little pale, now I see that her coloring just wasn't quite right, but then...yeah. I saw nothing

Genna was frequently tired, she had zero energy for her new dance class, I figured she just didn’t like Irish step dancing as much as twirling in a tutu. She was kind of ferocious diva a lot of the time, but I figured that was just a phase she was going through. The doctor had given us no answers, so we just kept slogging on.

At the very end of her kindergarten year, Genna’s teacher got sick. Mrs. C had all sorts of doctor’s appointments, and near the end of May 2004 we found out, to our unspeakable horror, that she had a malignant brain tumor.

You know, 9 years later this is still really hard to talk about.

Genna didn’t really understand, she just knew Mrs. C was sick, and we tried to stay hopeful, but we knew the stats were grim.

We finished out the school year without Mrs. C, and jumped into summer. G’s annual pediatric check was set, as was my son’s (two summer birthdays means we always do all those appointments in the summer), her eye check was set up for August 3, after our annual trip to Lake George.

I remember nothing else about that summer.I have pictures somewhere. But I remember nothing else.

After August 30, everything else disappeared.

Apparently we went on a steam train ride. Look at how pale G is. How did we not know?
Old pictures bring up hard questions.

tomorrow: D-day, aka The First Worst Day Ever

NF Management 101 , or, Hey, Maybe things WILL be Alright.

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 3


After the shock of realizing G had NF, I started to search the internet. We only had dial up then, and a big clunky computer, but I managed to find the Children’s Tumor Foundation website and a bulletin board of parents of NF kids. I bleated out my pitiful tale of new diagnosis, and a mom reached out to me, talked me off the ledge, gave me hope. I am forever grateful to momma Beth for those e-mails, those words of encouragement. Her daughter was on chemo for brain tumors (ooooh yikes), but she seemed to be doing ok. I tried to wrap my brain around what NF would be for G. . . but it was too scary.

Bizarrely, (in retrospect) I was mostly scared about cosmetic stuff for G, the bumps that can come with NF (ie fibromas, small tumors on the skin). I knew kids had been HORRIBLE to Dave when he was a young teen, all because of his bumps…I knew that I might venture into uncharted levels of fierce of anyone messed with G. Well, maybe not “might venture”. I had always felt hideous as a teen, NF could not make my beautiful girl feel like that.

(and this was before we knew about TLC and programs such as "My 200 lb tumor", which generally is about NF patients. sigh).

Our pediatrician wasn’t super concerned, he did suggest that we see a neurologist and eventually get a baseline MRI for Genna, and that as soon as she was old enough we should start getting her eyes checked every year by a pediatric ophthalmologist. (ophthalmologist is quite possibly one of the hardest words to spell Ever. It took me twice to get it right here, which annoys me.)

We only told a few close friends and family. . .and then we tried to go on with life. Genna was a roly poly ball of fun and attitude, her big brother was a strong willed but curious and energetic kid, we had our hands full WITHOUT worrying about NF.

And really, things were ok.

At 14 months old we did get G that MRI, it was a nightmare trying to sedate her, she had to drink this awful purple sedative (maybe versed?) and she kept fighting the sedation, staggering around like a drunk sailor (we kept trying to hold her, but she kept fighting to walk around). The tech told us, “she is a feisty one!”. Yes. Yes she is. I sat in the waiting room and wrote melodramatic poetry about my baby girl. Like with references to “khaki clad doctors munching chips” (they were) and “tigress claws protrude”. Good stuff. Don’t know WHY I’m not poet laureate yet.

To our great relief, the MRI came back clear. The report noted that G had some UBOs (Unidentified Bright Objects. I’m not kidding. That’s what science came up with to identify these marks in the brains of NF patients. Seriously. The coffeemaker in the lab must have been broken that day or something). Otherwise, her brain was healthy. No sign of tumors.

I was so relieved, I had prayed and prayed particularly to a certain saint (it’s a Catholic thing; we figure folks who are in heaven have time and a mission to pray for those of us still down here. It’s kind of this cosmic solidarity thing that I frankly really appreciate about being Catholic). ..this answer to prayer seemed a direct result of those novenas I had prayed and prayed. St. Teresia Benedicta of the Cross was my NF optic glioma go-to saint…because that is what the MRI was looking for, the optic nerve tumors that list references, and we had scanned on Yom Kippur, which had relevance to St. TBotC. I figured that was a Sign from God. (I say it with capitals, that’s just how it comes out, I was so relieved).

(as a weird side note, optic glioma as a diagnostic criteria was only recently added to the list, based on research. Yay, science. Woo. Glad to help with that.)

Genna’s eye checks each August were also fine. A nightmare (if your kid has had to go to an eye doctor as a preschooler you know what I’m talking about), but the doc was good and G’s vision was perfect. Phew!

Eventually I even stopped being on the CTF board so much, the stories of families in really dire NF predicaments were freaking me out. Our life was full.

When G was 3, we decided I could try to get through another pregnancy, and we found out we were expecting just after the attack on the World Trade Center. 9/11 was intensely painful where we live (NJ), and after that I just had this horrible feeling of impending doom (great thing when you are trying to have another baby, right?) . I just felt like other bad things were coming. No joke, I knew something terrible was going to happen again. Sigh. (cue menacing music).

Just after Christmas, Dave’s grandmother became very ill. After a lot of confusion, doctors finally diagnosed her with a malignant brain tumor. Grandma was past 80 years old, she decided not to endure harsh treatments that would do little to extend her life, and within 2 months of diagnosis she passed away.

This was our first, horribly painful moment of personal brain tumor awareness.

Our grief over losing Grandma was somewhat assuaged by our Rosie’s birth in May of 2002. Rosie was peachy and fair, the opposite of Genna, and she was also round and healthy and perfect. Yup, smitten again!



I was in a hurry, and having a ptsd fest over looking at old pictures, so I just picked this one.
She looks like Andrew, right?


Aside from grief and that feeling of doom, things were good. Firstborn was in second grade, G was going to start preschool, we had a beautiful baby. . .

Genna was way into the baby thing, she would set her dolls up right by Rosie.

I miss those days. I hardly remember them, even writing this I have to think hard to remember what life was like then. We camped, we hiked, (Genna hated both activities even then, admittedly), we went to all of firstborn’s tee-ball games, Genna did ballet (which pretty much meant she twirled around to the beat of her own personal drum), we picnicked with friends and family, we were very involved in a prayer group and my son’s school.

But when G started kindergarten in 2003, things started to seem not quite right. NF was about to make its true self known.

Beginnings

May 2

So in October of 1994 I married that pamphlet toting guy. And at the end of October 1994 I got pregnant (yes, I know, SUPERFAST), and then I realized, in between constant throwing up for months and months and months, that I was terrified about my child having NF. When clutching ye olde porcelain goddess, inspirational music doesn’t appear when the specter of adversity rears its ugly head.

I was obsessed and terrified.

But in July of 1995 I had a perfectly healthy baby boy. He was gorgeous, big blue eyes and brown hair and juicy legs and arms and cheeks. Challenging as all get out (sleep? I don’t need no stinkin’ sleep!), but totally healthy. He had zero signs of NF.

but many, many signs of cuteness.

Yes, there are things to look for to diagnose NF. For a firm diagnosis patients have to meet at least any 2 of a list of criteria. My children were ALL born with ONE of the criteria met: a parent with NF. Remember in that awful long paragraph from yesterday? That “50% chance of passing it on” thing? Yeeks. Having a parent with NF is one of the criteria. The complete list is: (thanks to www.nfcalifornia.org) :

1. Six or more café-au-lait spots 1.5 cm or larger in post-pubertal individuals, 0.5 cm or larger in pre-pubertal individuals (kind of a light brown birthmark)

2. Two or more neurofibromas of any type or one or more plexiform neurofibroma (nerve tumors)

3. Freckling in the axilla (underarm) or groin

4. Optic glioma (tumor of the optic pathway)

5. Two or more Lisch nodules (benign iris hamartomas)(ie marks on eyeballs, only visible with a special lamp the eye doc has)

6. A distinctive bony lesion: dysplasia of the sphenoid bone or dysplasia or thinning of long bone cortex

7. A first-degree relative with NF1



And by 3 months, 6 months, a year, two years, my son had none of the other 6 criteria. Woo! I started to relax. Well, as much as I have ever relaxed about anything in my entire life.

At a certain point we realized firstborn was starting to act like a Crown Prince of the Universe, and that perhaps a sibling would be a good idea. We both come from large families (I am the oldest of 9, Dave is the oldest of 6…and the only one in his family with NF), so more kids was always part of the plan. It took a bit more trying than our first time around, but in October of 1997 we got pregnant with kid #2.
And this time around, in between constant throwing up, I didn’t much worry about NF. We dodged the bullet with firstborn, so…yeah. Maybe I was just so sick (I ended up hospitalized during this pregnancy when I hit the ol’ 103 lb mark. I am 5’7”. I’m not kidding about constantly throwing up), or just overwhelmed with already having another kid at home and still working part time, but I didn’t much worry.

Genna was born exactly on her due date, July 24, 1998, at 8:30 in the evening. (She still refuses to be late for anything). She was a juiceball of deliciousness, dark brown eyes like Daddy, dark hair like both of us, totally Italian looking, totally a diva pretty much from the moment of birth. We were completely smitten immediately, pretty much exactly as we had been with firstborn, which was awesome (and totally normal, but it’s always a bit of a surprise just HOW MUCH you can love each child as they come, so utterly and completely right away).

Juicy Couture, indeed.  Or, Diva In Repose.

G was healthy and developmentally on track, really nothing was amiss at all.

I had two gorgeous, healthy kids. I almost couldn't believe it, because I'm kind of a dork, these kids were so gorgeous...

see? Gorgeous. G was about 3 months old when these were taken, Andrew was 3 and 3 months.

G has always been an all or nothing kind of gal. All smiles, or All Oh No You Did NOT. But mostly smiles. 

 

And then in January 1999, while changing G’s diaper, I noticed the pale brown marks on her little round self. I guess because the weather had been cold and she was so bundled up, and even in the tub she was a slippery moving mass of juicy baby-ness, I hadn’t noticed before…but there was one mark, ok. Then I found another. And another. Not super dark, just light brown birthmarks, mostly a centimeter or more in size…

Yeah, if you look back at that list, café au lait spots are one of those diagnostic criteria.

My baby had NF.

And I knew it , I knew it instantly and I completely unraveled, it was a Friday afternoon, and I called Dave, and I frantically called my pediatrician’s office (we were already scheduled for G’s 6 month well child visit)—they didn’t freak out. I don’t remember Dave’s reaction at all. How weird is that? But I don’t remember.

I only knew that everything was different. And that nobody was going to know that my child had this disorder unless they had to…I didn’t want her judged, I wanted her to be free and joyful and beautiful in all the ways I had not been. . .

I was devastated.  My hope for G's future was shattered.

 

tomorrow: Secret Life with NF.

Our Perpetual May

May is Neurofibromatosis Month.

May is also Brain Tumor awareness month.

I suppose May is an official month for lots of other things, too. It’s the month I was born, it’s the month of first communions and graduations and dance recitals and the official insanity of things running down before the respite of summer.

But in our house, the dual NF/Brain Tumor awarenesses become all –encompassing in May.

Spreading awareness for us means helping people KNOW about NF & brain tumors, begin to glimpse the reality of what LIVING with these two things can mean, and then hopefully help us push forward research for a cure.

Thanks to the officialness of the Children’s Tumor Foundation website, www.ctf.org , I can tell you through the magic of paraphrasing that Neurofibromatosis (NF) is a genetic neurological disorder which affects more than 2 million people worldwide. It can be classified into 3 distinct types, NF1, NF2 and schwannomatosis. They are caused by different genes on different chromosomes. NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born. NF can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation". Parents with NF have a 50% chance of passing the disorder on to their children. Children who inherit NF from their parents get the same TYPE of NF, but the severity of the disorder can vary wildly within a family. NF doesn’t discriminate based on gender, race, geography, or anything. NF is totally egalitarian about who it smites. CTF’s website asserts that “Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities. NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.”

If you made it through that entire paragraph without breaking out in hives, CONGRATS.

How did I know this BEFORE www.ctf.org even existed?

Well, in 1993, at the end of a very nice date with my boyfriend, Dave, he stood at the end of my walkway and kind of cleared his throat. We were pretty serious at that point, and thoughts of the future had crossed both our minds, I guessed. He pulled a pamphlet out of his pocket, and said, “um, I have this thing, it’s called NF…”

Well, then. Some gals get a good-night kiss to end a date, I got a medical pamphlet.

Ok, that’s not fully accurate, I am sure there was a good-night kiss, too. We were young then, you know. Ahem.

I read the pamphlet, and felt concerned and a bit confused, but I was in love, and sooooo young, and I knew that if I ever had a child who was blind because of NF (which the pamphlet told me could happen, even though Dave was fine, he just had some bumps on his skin, but whatever,), I would go all Annie Sullivan and teach the child Braille and we would Triumph Over Adversity.

Yes. I always choose melodrama. I could almost hear the inspirational music. But Dave was perfectly healthy, so the inspirational music and corresponding adversity were mostly theoretical.

Brain tumors, well, I was aware of those too, one of my classmates lost her mom to a brain tumor when we were in eighth grade, I only remember her mom near the end, on steroids and chemo and unable to really talk to us much when we brought a meal or something to their house…and I remember the day things got really bad and my classmate got called out of class, and we all knew, we just knew…

Pediatric brain tumors I knew nothing about. Low grade brain tumors, even less, although I knew my sister’s allergy doctor had had a brain tumor for years and years. . . I’m guessing now that that was a low grade tumor.

He still died.

There are many, many different types of pediatric brain tumors, in different parts of the brain, comprised of different types of cells. Some tumors are highly malignant and deadly, some are malignant but potentially beatable. Some tumors are slow growing, so called “benign” tumors because they tend not to metastasize to other parts of the body. The treatments for brain tumors include surgery, chemotherapy, and radiation, depending on the type of tumor, the location of tumor, and the age of the child. Scientists keep learning more and more about hidden variations within even pathologically similar types of tumors, variations that hopefully can be targeted in developing therapies.

Brain tumors and the treatments to cure them (oh, double edged sword!) can cause motor, speech, and cognitive difficulties, vision and hearing impairments, paralysis, and death. Brain tumors are horrible, dastardly beasts, low grade or high grade, brain tumors are horrible, dastardly beasts. And while many brain tumors are random acts of cellular yikes, brought on by no act of the afflicted, some brain tumors are caused by underlying conditions like tuberous sclerosis or… wait for it… Neurofibromatosis.

The brain tumors caused by NF tend to be low grade brain tumors—such as optic glioma, those tumors that can blind a child--which again simply means they grow slowly.

According to the Children’s Brain Tumor Foundation, www.cbtf.org (yes, the two addresses are weirdly close, I know) , 11 families each day find out their child has a brain or spinal cord tumor.

On two separate days, with two of my children, my family was one of those 11.

Twice.

Because of NF.

So May means a lot to our family, not that we are unaware the other 11 months of the year (I wish!), but in this month our NF and BT awareness reach epic overloading proportions. And this year, in an attempt to clear my own mind or make sense of the nonsensical or something, I am going to try and tell some version of our story, our family journey through NF and brain tumors, our never-ending May.

I don’t know, honestly, if I can manage it. We hit the 9 year mark this coming August, so I have a LOT of years to cover in 31 days, and I am committed to NOT writing too much more than 800 words or so each day. (stop laughing, really, I’m going to try. I know, I’m at 1300 on this one already, FAIL). MRI day is in less than a week, so…yeah. I don’t know. There is so much, so much to this journey. I don’t even know if it’s helpful for people to know. . .

But NF is so common. And treatments for low grade brain tumors (including the kinds caused by NF) haven’t much changed in decades.

DECADES.

So for May, I hope to spread a little NF 1 awareness (the variant our family has, the more common variant), a little low grade brain tumor awareness, and maybe a little hope. Because even though much of our story is really hard, really, really hard. . . we do have hope.

May is NF awareness month—and brain tumor awareness month. And I know that low grade tumors are only a subset of the pediatric brain tumor world, which is a subset of the larger brain tumor community. So I apologize for the limited scope of what I can say. For a long time I wasn’t sure we even really should have a voice about brain tumors, because my kid only had low grade tumors. That almost wasn’t sick, right?

Sigh. I don’t think that anymore.

I hope this story serves some purpose. I hope the struggles we've had can help other people who are struggling, too. I hope people understand more about these dual disasters by the end of May. And I hope that people feel some hope at the end of it all.



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For a really amazing and heartwrenching account of a family’s journey through a high grade brain tumor diagnosis, please, please read Donna’s Story, over on the Mary Tyler Mom blog, written for September, Pediatric Cancer Awareness Month. Donna's Cancer Story

Don’t read it all in one sitting. Don’t . Really. Just don’t. But do read the whole thing. It’s so important that Donna’s story be heard. And thanks to Mary Tyler Mom for inspiring this attempt at telling our story. You don’t even know me, but you are one of my heroes.

Itsy Bitsy Teeny Weeny Yellow Polka Dot Bikini...

If by "itsy bitsy" you mean "providing respectable coverage" and by "teeny weeny" you mean "well fitting" and by "yellow polka dot" you mean "pink and blue with tropical flowers", and if by "bikini" you mean "tankini", then Yes. Exactly that.

You know, Dante forgot a few circles of hell.


Over the years I have compiled an ever growing list of the circles Dante forgot, including (but not limited to)

*Kenny G albums

*dental work of any kind

*stomach bug with kids too little to understand “mommy is not a bucket, hug me later, HUG me LATER!!!”

*bugs with legs in multiples of 8

*the “singing” of Britney Spears

*snowy days at school when it’s snowy enough to make the students berserk but NOT snowy enough that you get to stay home.

*gas station bathrooms

*bathing suit shopping

Ok, so bathing suit shopping should maybe be first on the list.

My husband can look in a catalog, see a colorful bathing suit that just looks like a pair of shorts, and order them. For me…sigh. Circle of Hell.



As a teen, my uber-Caucasian-ness made bathing suits of any kind a nightmare, because there is nothing more persistent or mortifying than the clamor of other teens marveling at how white you are. Well, I’m sure there are more mortifying things (I can think of a few, also involving bathing suits), but this was the daily ugh. When you are really, really , REALLY white, people remind you of it. Constantly. Derisively.

Really, WHO CARES? But as a 15 year old…I really, really did.

Now, post-3-kids, bathing suit shopping is no more fun. The uber-Caucasian thing, I don’t much care about. The inexorable progress of gravity on my maternal physique is a little harder to stomach (literally) while bathing suit shopping. Even though the number on the scale is the same as it was pre-kids, everything has king of just settled into a Giza like shape. Too bad they don’t make limestone-styled bathing suits, I could be a wonder of the world.

Anyway, a few weeks back I had to take my teen daughter bathing suit shopping. This was our first time not just ordering something from Lands End. Eek.

I prepared her for the potential of mental and emotional turmoil that can ensue when Nothing Is Quite Right, bathing suit wise. I told her we’d likely have to try on a lot of things. We might not find anything, that is OK! Every girl has trouble finding a bathing suit.

She was SO excited to get to the bathing suit section of the store…she is old enough to have to look in the grown up section, but very, very short. I knew we’d be in for a challenge, especially since her shape is not quite as curvaceous as most grown-up bathing suits allow for, if you know what I mean.

She raced from suit to suit, picking up impossible things (stay away from the D, sister!), bopping around happily.

The first suit on: She was posing, smiling, loving every second (especially since there was WAY too much structure in one portion of the suit, we were veering into alarming airfilled Dolly Partonesque territory—I told her Daddy would have cardiac arrest if she came home in that suit). Suit after suit, she giggled and posed and had a blast.

SHE HAD FUN TRYING ON BATHING SUITS!

Yes, she had to try on about a dozen suits, then re-try a few and then we made some decisions…she wasn’t bothered in the least when I said some things just didn’t look right, she just barreled on to the next choice.

”I Look FAB-ulous!” she sang at me, posing in a hot pink floral tankini covered in big flowers…

And I stopped, lycra skirt in hand, and told her to hold onto that her entire life. Hold onto that fabulous, that confident sense of “I am awesome in my 4’10” “curvy” self!” Hold onto that joy, that silliness, that laughing at when things don’t look quite right. HOLD ONTO IT!

She just struck another supermodel pose and giggled.

What a gift. If only she could bottle that and give it to other teens…heck, give it to her little sister, who seems to be a lot more like momma in the confidence department (ie out of stock, generally).

So this week, I learned that maybe my circles of hell are NOT my child’s. Maybe girls CAN celebrate themselves on their own terms, not the terms dictated to them in teen fashion magazines.

Maybe bathing suit shopping isn’t so bad after all…

But I’m still going to try to order from Lands End and avoid the dressing room altogether. ;)