Making Sense of May

So May. Here we are again. 

I am tempted, some days, to say “May” like Jerry Seinfeld used to say “Newman”, this month of double awareness.   I don’t know why some days the weight of this gets to me, that NOW WE NEED TO BE AWARE OF NF AND BRAIN TUMORS. I can’t remember the last day I was NOT aware, so, what’s with May?

Especially since so many of my friends are in both of these communities, social networking is overflowing with awareness facts, pictures, graphics, etc.  I find that inspiring, motivational, depressing, and overwhelming all at the same time.

See why it is hard for me to even pick out a paint color? I am perpetually conflicted. 

 Reading through my blog from last year, where I describe our family’s journey…ugh. I know that was an important thing to do, but it is way past “merely a flesh wound!” , if you know what I mean.   If you want to know what life is like with NF and brain tumors (and why I am scary), that’s a pretty good place to start.

But I had a thought today while running, once I got to a quiet side street where I was not just thinking “yikes, another landscape truck? Dodge! Dodge!” (meaning my action, not the truck brand).  Today is gorgeous. Spectacular. Right now it’s about 63 degrees and brilliantly sunny, the forsythia are blooming and the flowering trees are flowering, I could hear birds chirping and squirrels scratching at trees (I double checked, I had a moment of worrying that it might be a larger woodland creature, but no, just a squirrel). It was GORGEOUS.  I don’t like running, and today I really felt tired, but the beauty of the day just hugged me.

Two days ago it was 43 degrees and raining here, like Noah digging out plans for an ark kind of rain.   Roads are still closed by us due to flooding (I toyed with the idea of adding a mile to the run to go SEE the flooding, but then my body told my brain to shut up and head back home).   This winter was epic, even by the standards of the northeast, we had so much snow, my early perennials were very late this year because the gardens were buried under 2 feet of snow until March.

Youngest child & dog, walking ON TOP of 15 inches of snow. Cold. Cold cold cold.

The dark, the cold, the endless precipitation—it was a tough winter.

my viburnum after storm #493

I don’t know what May is like in other parts of the country.   But here—well, in another week or two we’ll be past the danger of frost and I can plant annuals in my flower pots.  Our yard finally needs to be mowed for the first time this year. Everything that was brown and frozen and ugh is now alive and lush and beautiful…

Not fully grown, my evening primrose are still only an inch off the ground, the butterfly bush is just getting its first green buds, the hydrangea and viburnum are just showing where their leaves will burst forth in a few weeks. By the end of May, this potential green will be realized. 

my viburnum today, buds galore!

In Jersey—and much of the northeast, I figure-- May is a month of rebirth, of everything finally emerging from winter and bringing relief and hope that summer really is around the corner.  Winter (especially this year) is so long and so hard, it makes us appreciate so much more when spring finally comes.  The air just smells good today.  The birds sound so happy (the winter was so quiet).  I am so happy that May is finally here!

I had this thought, while running, a thought that having both Brain Tumor and NF awareness in the same month is really so meaningful…because May is so much a month of hope. We’ve had terrible losses in May, terrible grief over friends we love, lost to these two awful things…but there is still hope in the midst of that…hope that our love and memory for these children and adults can fuel our work for a cure.

Brain tumors and NF are both scary frozen wastelands a lot of the time. Nothing about either is nice…BUT within the communities that have grown around these dastardly beasts there is hope and love and a sense that we are moving towards summer.  Right now we may only see potential for a cure, for treatments that work without destroying a child’s future, for understanding the cellular mysteries NF and brain tumors hold…

But just like my viburnum and my hydrangea, that potential WILL come to fruition. I really think it will—and the hope and new life and green and sunshine of May are a WAY better time to think about these awful things, to see them in the sunlight of hope. 

By August the sedum this owl is guarding will be taller than the owl.

Ok, that sounds maudlin, but I really don’t mean it that way.  If both months were in February I would have to hide under my bed.  Having May be the awareness month for both of these things that have truly changed everything about our family is in some ways a blessing.  The beauty of this month can be a hopeful lens through which to present and understand the realities of brain tumors and NF.

We appreciate the green and warm and sun so much more after the awfulness of the winter we had.  And after the awfulness of rather a lot of the last almost 10 years, I appreciate the hope that is fostered in this month of May.

Next Tuesday is MRI day. We may be basking in sunshine or once again hoping for that potential yay to find us again…I don’t know. But I am trying, fighting against my wintry self to see the hope in each day of May, instead of the painful reminders of what’s past…to see the hope.  

Live. Hope. Find a Cure.

       

Slogging On

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 21

CURE NF!

So with 2008 underway, this is how it was at the Casa Camiolo…

Still singing a few too many choruses of NF Sucks to the tune of Jingle Bells, I am telling you it is like the Copa Cabana of Smite Songs…

Uh-oh…just occurred to me…seriously at this very second…sing with me…

Neuro-fibromatosis

Is a crappy little thing,

About which I hate to sing…

You know it’s Neuro-fibromatosis

A disease we can’t predict

Makes me want to go get sick…

I swear to God, Copa Cabana is exactly like a benign brain tumor or nf or both, it HAUNTS YOU!!! And grows, and can take over everything…and you can’t shake it, even if you run and hide it follows you…

How could we have gone this far without me figuring out that neurofibromatosis FITS TO COPA CABANA….?

*********
Semantic note regarding NF: NF is technically a disorder, NOT a disease. Some people get very upset when NF is called a disease. In my rendition of Copa Cabana ala NF, "disorder" didn't scan properly. Also, NF had always hit my child like a disease, so I call it that if I want to. Smite-wise for us? Disease.  But science-wise, it's a disorder. Lesson done.

But then we HAD to keep living. School was busy. The kids were busy. Dave was still working about 87 hours a week. Just like there’s no crying in baseball? There is no “fear break” built into real life, even real life with NF and brain tumors.

I realized G needed to talk to someone local, to find some help for her anxiety and food issues, but I had a terrible time finding anyone who would help us. We scared people away. It was such a frustration, we were too far from CHOP to go THERE for counseling, nobody in our insurance would help us…it was a struggle. I did finally find someone, out of network, which meant $150 a visit. But it helped. So…we made it work.

Life went on. Andrew broke a finger, Dave kept running, we saw David Bailey in concert again,



David Bailey, May 2008



went to Six Flags with tickets Genna won by calling into the radio (while I was in the shower…of course they needed to talk to mom…yikes).

G at Six Flags, being goofy

I substituted at school occasionally and hid all the bread and pretzels in the house up in my bedroom so my poor hypothalamus-challenged child wouldn’t eat them all. Brain tumor note: the hypothalamus is like the brain of the brain, it controls an awful lot of really necessary body functions, and once it’s broken it cannot be fixed. Ever.

I even secretly started running. Just a little. And I hated it. But I felt like if I tried to run, or, more accurately, "run" , maybe I could contribute to this cure business some.




Lake George, 2008


G’s August 2008 scan was stable…but…

I knew. I knew the “but” was there as soon as our doc told G she was stable. I know our doc too well…she has a way of not saying things before she says them, I just know, and she knows I know, and it’s just a pile of ughulous knowing.

There was an area of concern in G’s hypothalamus. We needed to scan again in 6-8 weeks, throw in another spinal scan for good measure, if things looked ANY more concerning we might need to take some action.

And with that, I was back in the abyss.

But until September we just had to wait. G went to camp and had a dazzling time (she literally talked THE ENTIRE RIDE HOME, I’m not sure she stopped to breathe), Andrew went to church camp and came in 3rd in the Olympics there, Rosie oozed cuteness. We passed the 4 year mark. I could have gotten a college degree in the time we had been living with brain tumors.

And on September 15, G’s scan was stable. We had another reprieve.

This uncertainty, this fear of what could come, it is so paralyzing. I understand, while reading through all of this, now nearly 5 years later, why I am such a slug today. It is mind numbing to be in survival mode all the time.

It’s like this:

I’ve realized that scan day, even a Good scan day, rips off my fabulous haute couture Denial Dress and leaves me in reality rags…looking at all the pictures…the pervasive wreckage inside my child’s head…it’s way not cool. I have said to about 5 people this week that it’s really akin to stepping out of your house the day after a hurricane and saying, “phew! We weren’t swept into the sea!”…but then looking around and seeing a boat on your front lawn, a tree on the roof which is now on the neighbor’s yard…a cow wandering by…eek.

The spinal scan is so fabulous I can’t overstate it. Reality doesn’t always bite.

The brain scan…well, it’s stable. Stable is good.

My kid having a brain tumor: not good.

So the not good is as good as it can be, which still doesn’t leave me feeling warm, fuzzy, and woohooish. And seeing Stable means I have to SEE the scans, which I never look at once home unless ABSOLUTELY necessary. Once is enough. It’s not like I forget…

Or, as a friend and I discussed, we can move forward, but not on. The Bag o’Woe is coming with us. But we still get to carry it, and that is ultimately a good thing.

But we got to keep going…the weekend after the scan both Andrew and David ran the Philly ½ Marathon for NF Endurance (Andrew placed second in his age group! Not that many 13 year olds ran, but whatever!). At the finish, we were waiting and cheering for Dave…and then we saw him, bent in half, staggering like a drunken sailor.

Um, no, that is not how Dave finishing a race is supposed to look.

People helped him across the finish, I was running along the fence and screaming at him , then he was lost in the crowd (it’s a huge race, everything is barricaded at the finish), I was panicking, finally I located him in a medical tent, 2 ivs plugged in, he was barely conscious but managed to whisper, “I beat my time from last year!”…

We think it was an electrolyte issue, not a hydration issue, per se, and we know that Dave has to be REALLY careful about this kind of thing when running. Is this an NF issue? Maybe. Dave has always had weird hydration issues, body temp issues. NF is so odd, it could be an NF thing. Is it a scare the crap out of your wife issue? Absolutely. At least we did get to add another hospital to our “Hospitals of Philadelphia Grande Tour” . Ahem.

I didn’t even get to see Andrew finish. Sigh.

But the NF Endurance folks were an awesome support as I tried to figure out what had happened to Dave—and we did raise awareness with the medical folks at the race. Ergh.

School resumed in full force, the fall busy-ness was upon us…

Halloween '08 . Rosie wanted to be a ghost.

In one glorious hooray, Genna got adopted by the Rutgers Women’s Lacrosse Team through the Friends of Jaclyn Program. We went and met the team, G LOVED the idea of this, even if none of us had a clue how lacrosse worked. Coach Laura was so kind and welcoming…joining the team was such a beautiful thing for G… (I know I have a picture, I just can't find it).

And we had another stable scan, and another, although each time the scanxiety almost killed me…

On January 20, 2009, we brought BOTH girls for a scan. This is generally ill-advised, but we did it. This was my plan…

We will leave our house hopefully before 5:30 am…coffee around 6 (yes, that merits scheduling…it also marks G going totally NPO, we’re cutting Rosie off then, too…can you imagine letting Rosie sip juice while G is fasting? Hell hath no fury)…Anyway, hopefully we’ll navigate the South Street detour for the first time around 7 & then check in by 7:30.

Genna scans at 9, Rosie at 10. Rosie’s scan will be longer, there’s some new imaging study for plexiforms, Dr. Fisher’s project? Whatever. Hopefully we’ll have both girls out of their respective scanners by 10ish and 11:30-12 ish , um, respectively.

During the scan I plan to do one or more of the following:

1. Listen to my Ipod, either something LOUD or something Happy, not sure.

2. cross stitch the super easy thing I started so I’d have something for scan day.

3. say a rosary.

4. continue reading Word Freak, a book about competitive Scrabble players that Rita gave me for Christmas. I started it for tomorrow. New things don’t get started on scan day, I’ve learned that.

5. prepare an entry for the Wergle Flomp poetry contest. A contest for Really Bad Parody Poetry? My own personal nirvana…

6. Write the devos I need to get done.

7. stare at the floor.

8. eat honey roasted peanuts secretly, so as not to be a problem for kids in the waiting area who are NPO.

9. stare at the wall.

10. ponder how hard would it really be to memorize letter patterns so I could be a competitive Scrabble player.

11. Call Ronald McDonald House to see if they have room, if they don’t…panic and start calling hotels. Now we remember why we usually avoid this option, the possibility of panic is too great.

12. Jump out of my skin EVERY time someone walks through the door, especially if they are a) a doctor I know or b) have “neurosurgery” embroidered on their coat.

13. probably wish I hadn’t given up chocolate for a month.

Likely I will mostly do 1, 7, 9, 12, and 13 (and make Dave do 11).

And both girls WERE stable, and we lived to fight another day. But oh, the battle was starting to feel LONG.

Not unlike this blog entry. Ahem.

And the battle would only grow longer as time went on.

Onward and Upward



Flashes of Hope, June 2006

May 17.


Today happens to be World NF Day. Now you know, do with that what you will.

So we had our miracle reprieve; G’s progression was a weird, non-tumor, NF thing. We got to restart chemotherapy, go on G’s Make a Wish trip, and try to gut through the rest of school.

And we were so happy and grateful…and weary and run down and still vaguely terrified. By this point we couldn’t even see straight, so many odd/scary/medically challenging things had happened. We were ecstactic road kill most of the time.

This is par for the course with brain tumors AND NF. You just never know what’s going to hit next.

And a few weeks after G’s Make a Wish, our CHOP friend Timmy passed away. We were heartbroken. I still think of Timmy every time we have a brilliantly blue sky day…he had such beautiful blue eyes.

Brain tumors are horrible, dastardly beasts.

But we did have some joys to get ready for: a concert with Genna’s favorite singer, Chris Rice (she has 3 favorites now: Chris Rice, Matthew West, and Scotty McCreery, when she met Scotty this past Sunday she told me that NOW her life is complete, she has met all 3), and G’s first communion.

You don't get the sense of it here, because he was all hunched over, but Chris Rice is REALLY tall.
G was thrilled. He seemed super nervous.
Dang, I liked that purse.

In the very early days of our time at CHOP, there was a bulletin board in triage, covered with onco kid pictures…a board that fell victim to HIPPA stuff eventually, which is sad. Every week I would look at this one first communion picture of a little girl, bald head, hands folded…it was so beautiful, and to reach that moment with G kind of meant something huge to me.

After MAW we did G’s next round of chemo, and realized rather suddenly that the weird sunburn from Make a Wish was NOT sunburn at all…it reappeared with a vengeance after this round…burns that turned into blisters running up G’s hands and arms, on her feet and legs, and all over her little ears. It was horrible. At least I didn’t have any more guilt about inadequately sunblocking her…this was a full blown allergic reaction to the procarbazine, the P of the TPCV.

Our chemo cheer was never the same after that. TCV just does NOT have the same ring.



Genna and her cousins Aiden & Kevin (Aiden also made his first communion)...
if you look closely, you can see the marks from the blisters.
G picked them all off. Sorry. During first communion practice. Ew.
But she is still so cute.

best picture of G's personality ever.

But G made her first communion, albeit with blistered arms, and I checked off another milestone that I wasn’t always sure we’d reach. The day was perfect in every way.

Onco Secret #427 : You buy an obscene number of portraits. Sigh.
Our favorite is the one where she is like "CHECK OUT MY FABULOUS DRESS!"


 

The months following our miracle scan were very difficult, which seems impossible, but with the allergic reaction came a continued whomping of Genna’s blood counts, or the time we now refer to as “Transfusionfest 2006”. Between blood counts at our pediatrician and unplanned trips to Philly for blood or platelets, we were completely wiped out. 23 or 24 times G needed transfusions during that period, every time meant a long day at CHOP, finding child care for my other kids, packing up stuff for G to do. G panicked every time we went to CHOP, her anxiety was at an all time high, she was petrified of having to sleep over. The one time we went to CHOP and found out after we got there that the blood bank WAS OUT OF THE RIGHT KIND OF PLATELETS, we couldn’t even stay in Philly (the nurse practitioner offered to call Ronald McDonald House), G was so upset at the idea of staying that I had to drive the 2+ hours home and then drive back the next day.

I have a continuing, undying gratitude for people who donate blood. I used to...and then the last time I went they couldn't get enough out (not lying). The nice tech said, "well, maybe we could use this for a child" (if I only knew then that MY child would need this some day!)...the other tech said, "or a really short person".

Ahem.

In May G spiked a fever, we went to the local ER (at this point they knew us there; Life Lesson: when the local ER docs recognize you and remember what games your kid likes to play, AND don’t try to tell you that they “know how to access a port” (which is code for “I learned it in nursing school but haven’t done it in 7 years but hey, how hard can it be?”—followed by child screaming “AT CHOP THEY KNOW HOW TO DO THESE KINDS OF THINGS!”) you know you are going to the ER too often), G’s counts on this day were nowhere, and we had to get ambulance transport to CHOP (I was NOT going to stay days and days at a hospital where I have to spell things). That 4 a.m. ride to CHOP, listening to jazz over the ambulance radio while shivering in the early morning chill (we had the windows open to try and bring G’s fever down)…so surreal.

You know, that was 7 years ago today, that ride. Hm.

We were stuck a week at CHOP that time. For an ear infection. Even regular infections can mean serious business for a kid who has no immune system.

Our doctor decreased G’s dose of the T, C, and V, but still, her counts were consistently in the toilet.

Lesson Of Blood Stuff: Hemoglobin below 8 = yikes. Platelets below 50 = not so hot (some hospitals go lower; generally when G transfused she was in the 10-20 range). Weird Onco Note: Platelets look like concentrated chicken noodle soup without the noodles. They also only have to be the same Rh factor, not the same blood TYPE, apparently, which gave me a heart attack the first time I saw G getting platelets that did not match her O negative blood type.

it became kind of a joke, EVERY time we saw the Flashes of Hope people at CHOP Genna ended up needing platelets.
Thank God I haven't seen them in a while.

We were so worn down, G kept spiking fevers, or needed blood, or the other kids got sick. I was just wrung out. By mid June I figured out that in one stretch of 11 weekdays we had spent 6 days at hospitals and 2 interrupted by local doc visits (for counts). It was so hard. Reading the old CB stuff is so hard.

I so wish people KNEW, or understood this world we inhabit...this is so very tiring and lonely, sometimes. Just trying to make lunches when you're out of bread because you've been at the hospital all week...finding somewhere for the 10 year old to go play...finding dollars for parking...packing the just in case bag...day after day, it's like Verdun...sustaining losses but never getting anywhere...trench warfare of sorts. –June 21, 2006

I did realize on the way to Philly today that you can sing, to the tune of Shenandoah, “Oh Philadelphia…I long to shun you…and to stay—back in New Jersey” etc. Dave loves when I do that. (He really enjoyed our hit from Friday, “We’re—coming down, so let’s get that platelet party started!”). July 3, 2006

G was tired, and sick, and having major OCD / food issues, courtesy of her mushed hypothalamus. She didn’t have an “off” switch for food, and she would go get WHATEVER food she craved…sticks of butter…packages of cheese…it was awful because THIS was the day to day manifestation of brain tumors at our house. It sounds dumb, but the food issues were so all –encompassing at home, they caused incredible stress for all.

Did I mention that brain tumors are horrible, dastardly beasts?

Anyway, On August 24, 2006, Genna had a scan, it was stable again (huge relief), and our doctor sat us down…

In fact (prepare to be amazed)…Dr. B thinks we should strongly consider stopping chemo now, instead of doing 2 more rounds. This kind of blew us away…still pondering that. I can’t imagine having no excuse for my unfinished laundry…

Seriously, I can’t imagine NOT treating these things…but they’ve been stable a while, and G’s bone marrow can only sustain so much injury before damage becomes permanent and we inadvertently cut off future lines of chemotherapy OR create disastrous secondary disease.

Our next appointment is really in a whole month? Yikes…

Say what, Willis?

G’s bone marrow needed a break.

It is so surreal, stopping treatment when there was still tumor kind of everywhere. Of course there is relief, but for us, the relief was almost superseded by terror. I would only be at CHOP ONE TIME A MONTH?? (for port flush?) The tumors would be left all to their own nefarious devices?? After the 2 years we had had , I could not fathom this ending well.

But Genna was so happy. She had started getting scanxiety (alas), and she was so happy things were stable and she could STOP.

The hospital was my safety net. Not being there a LOT gave ME separation anxiety, really, which sounds ludicrous, but it’s true. At the hospital, everyone spoke our language, everyone understood our reality. We felt so safe there.

But now we were on our own.

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.

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.