Wednesday, May 1, 2013

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, , 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 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, (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.


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.


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.


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.

1 comment:

  1. Thank you for sharing your story, for opening a door for others who feel alone, for loving your life and your children even on the roughest of days, and for being you.