Sunday, June 4, 2017

Kindness--an Idea Worth Trying

 "Ideas have Consequences"

This hangs in my classroom, this phrase, on cardstock, laminated. Recently, the news in the world and in my own smaller personal sphere shows an awful lot of terrible ideas having consequences that people just don’t think about—or somehow rationalize away. Violence, injustice, selfishness as ideas create suffering, sorrow, and struggle. Aka the evening news.

Here’s a new idea: be kind.

I know. Kind can be hard. We have real issues with people. But the idea of kindness put into action creates brilliant consequences. Kind is brave. Kind is thoughtful. Kind is fruitful.

Kind understands the big picture of things—like maybe no deity wants people killed while enjoying an evening pint, maybe he wants dialogue and work to make the world better, instead of brief acts of horrific violence that scar families and communities forever. Yelling “this is for fill-in-deity-of-choice” (as related in the news) seems like somebody got the idea of what said deity actually wants terribly wrong.

Kind understands that ideas have long term impact – if we treat our planet like it is indestructible, when science tells us otherwise (in small words we should be able to understand), we may end up reaping environmental death while we try to sow economic growth. At what cost prosperity—if indeed any path that ignores Earth’s warning signs can lead to real prosperity? Kind knows that we need to protect the earth for each other, especially for those in the developing world for whom the proffered economic growth is only a distant rumor, and for whom the consequences of environmental disaster are much more immediate and unavoidable.

Kind understands that unjust wages and disrespect of workers (defined many ways) are never truly  “business decisions” Cutting wages or unjust downsizing impacts families, causes real hardship and pain, and does nothing to benefit the greater good.  Working together to solve problems (even “business” problems) fosters greater long term positive productivity and even more meaningful solidarity.

Kind sees every person as worthy of respect. Every person—not just those who agree with us. Every person. This one is hard. Super Hard. As she who references her imaginary book, “Morons and Their Friends” rather a lot recently—this one is hard for me. Sigh. Kind is hard.  I am grateful for all the people who show me what it is to be kind. I have so much to learn from all of you.
Kind understands that people are legitimately (or irrationally, in my case) afraid of many, many things, and it is easier to be brave when your fears are addressed with kindness, not dismissal. 

Kind isn’t warm and fluffy and snooglyboogly all the time. Kind often requires taking a deep breath and listening…and HEARING what other people have to say. Kind can require a hard word of truth sometimes. Perpetuating cognitive dissonance or untruth is a great unkindness.

Imagine if for one day, everyone tried to be kind.

I know, it’s a stretch, but try.

Imagine one day where CNN and FOX had no bad news to cover (although that might be a full day of angst about what is happening with the news?? We have a panel of experts to discuss…). Where BBC could JUST cover soccer (sorry, football!). Where the local news talked only about “human interest” stories, because everyone took an entire day to be interested in other humans and the benefit of humanity at large. Imagine what that would LOOK LIKE. What that would sound like. What that would taste like. Kindness is prolific and morphs and grows the more it is spread. Imagine that day!


That would be The Best Day Ever.             

A day of real kindness—the kind of kindness you see after a disaster, when people go above and beyond to help each other—or states and companies take initiative to protect the planet on their own—or people help workers network and find better jobs where they are respected after unjust “downsizing”—or people of different beliefs and traditions sit and eat a meal together and share their lives—or people reach out to the lonely and afraid and welcome them into conversation or even just smile at a person on the street.

What a day that would be.

I wish for one day, just one day, the world could give this idea a try.

I think the consequences would be amazing.

Thursday, May 4, 2017

Compassion and the Darkest Hour

During the early days after my daughter’s brain tumor diagnosis, I was incoherent.
I barely ate for 10 days.
I couldn’t sleep.
My husband and I sort of waded through a fog of despair. I don’t know how else to describe it, that slow motion/breakneck hurtling forward feeling of those first weeks.
In a matter of hours, we went from getting G a Happy Meal as a reward for being good for her MRI to playing phone tag with neurosurgeons in New York and Pennsylvania.
We were utterly broken, and we stood at the epicenter of a sea of brokenness—we are both from large families, and the ripple effect of this disaster battered a lot of people we love.
G is NOT an only child.  At the time, her little sister was 2, her big brother was 9. Trying to keep functioning for them, and for G, pretty much sums up those first weeks into months.

The first blinding lesson of all of this—after the “if a doctor calls you immediately after an MRI that is NOT a good thing” lesson – was that in time of devastation, good people show up.  Even that first day, that first horrible day, a friend of ours had planned to bring us dinner, knowing we had this MRI planned and it would likely be a stressful day. And as she brought that chicken divan to our door—and I was on the phone, crying, begging our pediatrician to just tell us what to do, what were we supposed to do??—I mouthed to her “please pray”.
And she did.
In the weeks following the diagnosis/shunt surgery/port surgery/ start of chemo/almost immediate vision loss/severe behavioral challenges/chemo fail/ regroup, people carried us. Meals showed up at our house regularly. G was inundated with Care Bears and crafts and sparkly things. Our 2 year old was cared for by family during our frequent trips to Philadelphia, 2 hours away. Family members stepped up to take our 9 year old to his baseball games.  I got taken of the mandatory “lunch duty list” at school (one of the very few things I instantly saw as a huge blessing of this awful diagnosis. ;) ).  Random friends of my parents went to G’s school to provide one on one help for her, because she was having such difficulties emotionally, academically, and physically while on chemo. Every day. They showed up every. Single. Day. For the entirety of the school year. For free.
Compassion. We saw compassion lived out, acted on, practiced at a level we had never witnessed personally. It was staggering, and humbling, and life giving.
Being on the receiving end of this level of compassion is not easy—it feels…hard. But we are so grateful.
Over the last 12.5 years since that terrible day, we have gotten better at asking for help—not directly for us, usually (that is still hard), but for research. For organizations that have blessed us, groups like Ronald McDonald House & Ronald McDonald Camp, Children’s Hospital of Philadelphia, Friends of Jaclyn, Camp Sunshine, the Children’s Brain Tumor Foundation, and of course the Children’s Tumor Foundation. We ask and ask, because we want G to grow old, we want her sister to grow old, heck, even though Dave and I are well on our way, I want him growing old with me and firstborn, too!  So we ask. And people have so generously answered us so many times and ways over the last decade and more. We are grateful. Nobody has to do that. We are sort of continuously agog at how awesome people are.
And it is in this spirit that I hope compassion prevails today, in the debate over Affordable Health Care. We know we are NOT entitled to people’s generosity. Generosity and compassion are gifts. We know this. We have been blessed, too, that Dave has great insurance at his work, and all of our medical yikes, the 50+ MRIs (at over 10k a pop, usually—and that is only for one of our NF kids), the multiple surgeries, the hospital stays…those are covered, to a great degree. And we are so, so lucky. G is 18. She will be 19 in July. When my 6 year old G was diagnosed with massive hydrocephalus and multifocal brain tumors, we could not see this day. We are almost incoherently grateful that she has gotten to grow up.
In a few years, she will have to take on her own medical care—our insurance will no longer cover her. The ongoing challenges of the dual brain tumor/NF diagnosis are many, and in every way, shape, and form are the legacy of her pre-existing condition.
 I try to avoid political discourse here; that is not what this page is for. I avoided social media for two months during the election, the political discourse from friends on both sides of the spectrum was so demoralizing to me.  Still, as NF and brain tumors have intersected in our family’s life, so does the issue of insurance and our G’s future. This is personal for us, for G. We have fought so long and so hard to care for her, to help her grow up—and we can try to provide as best we can…
But at the end of the day, we have to appeal once again to the compassion of people we don’t know.  Strangers who, on social media, say things like “your sad story doesn’t obligate me to pay for your health care” (this was in response to Jimmy Kimmel’s monologue about his newborn son).  While this statement is a bit shocking—it is true. Very true. Our sad story obligates no one.  We totally respect this. We can truly only appeal to compassion and generosity, fueled by the conviction that our children’s lives—both in my family and in our community of smite-- are worth more than any actuarial calculation about insurance risk/benefit.
I hope and pray that our elected officials (I called ours!) can see with eyes of compassion, and understand that behind every statistic there is a human being, who has a family and community that loves and values them. Just as the picture of that little boy on the shore in Greece made people understand that refugees are not faceless threats to society, but young children and families desperate for a life free of violence and upheaval, I hope the stories many parents are sharing will help people see that “pre-existing conditions” affect children and adults who just want a chance at a healthy life—folks who make the world a better place by being in it.
Policies have consequences. Nobody is asking for entitlement, just for that compassion that makes us most human.
Thanks, for the millionth (and still not enough!) time to all of those people who have shown us so much compassion over the years. You all have helped G get to grow up. Thank you. I hope that she does not have to fear a future where she can’t afford medical care—I really have to try and trust in the continued compassion of good people everywhere.

Monday, May 1, 2017

May Again

Fall, 2005.

I got to firstborn’s baseball game late. It was fall ball, and I don’t know why I was late, Dave and the girls were already there. But as I walked across the field, I could tell something was up.

The moms on the bleachers were all looking at me as I galumphed towards the field. From 100 yards away I could read their faces.

G had told them. I could tell, from across the field, that they knew the story we had not told.

One mom confronted me as soon as I was within earshot. Apparently G had told the moms quite cheerfully that she was excited about going on her Make a Wish trip. She didn’t know why she was going, but she was going to get to go to Disney World on a Train!

This was only one year, 5 or 6 MRIs, 2 chemo protocols, 3 surgeries into it, so…ok, I have no clue why G told the moms she didn’t know why she was going on her MAW trip.  Um, BRAIN TUMORS?? But she was 7, and DISNEY!


It’s not that we were trying to keep anything secret. Multiple brain tumors, vision loss, hydrocephalus, chemotherapy…that kind of gets public quickly. But baseball was firstborn’s realm, and we knew, at one year in, the effect our story had on people—he needed a safe place where brain tumors did not effect everything. An effect that could be read on faces 100 yards away.

Low grade tumors are hard to explain. One mom said to me that day, “so if it’s benign, it’s ok, right?” Even then I knew nothing about this was alright—but that was what she needed, to be able to be by my chipper, sassy 7 year old without crumbling. I respect that now more than I did then.

May is both brain tumor AND NF awareness month. For our family, the two have been inextricably tied since August 30, 2004.  We are uber aware.  When G told those moms in 2005 about her Make a Wish trip, we were still newbies; the wound of awareness oozed painfully through every day. 

Really, that could have been fall of 2006, after the trip. We’ve had a lot of baseball, and we’re a lot of miles into this journey…she may not have remembered why she went.  This many years of ongoing yikes later, the dates start to blur—which is a horror of a different kind for a history teacher.

This is the first year we have not held an advocacy/fundraising event for the Children’s Tumor Foundation (the NF research organization we do stuff for); this is the first year I don’t have new pins for brain tumor awareness month.  This is the first year in a while we haven’t had an MRI in May (it’s in June, if I can ever get through phone tag with CHOP).  We are no less aware—but we are navigating our journey in a new way.
I still plan to wear my random awareness clothing every possible second. It makes me feel better, somehow. Like my festive Wall of Courage or END NF t-shirts can defy the ugliness of these dual diagnoses? Yes. Yes they can.
My children who are affected by these diagnoses are old enough to have a significant say in how we tell THEIR stories. And we respect that.

 One still leads with brain tumor, then is surprised when people are horrified, and then just plows onward. The other is open about her story, if people already know, but she has chosen NOT to lead with it when she meets new people and works her way through high school.  We respect this, even as I know at some point we will have to face again the horrified expressions of parents who didn’t realize what we carry.  At a school banquet in  the fall folks at our table were talking about a young person they knew who had low grade, inoperable tumors, and how horrible and unbearable that must be…Dave and I just looked at each other. It wasn’t the time. We just couldn’t do it, but awareness gave us a smack upside the head over our house salads.


Our work is far from done, obviously. We live with NF and brain tumors every day. We know that NF is progressive and unpredictable. We aren't done. The late effects of many years of treatment, the challenges created by NF and brain tumors are daily things to be dealt with and worked through, if not overcome.  This past year we lost several NF / BT friends, which is excruciating.   There is no way to state softly what that does to our hearts, here. No way. Everything about it is wrong.

But this is our path. We have to try and walk it the best we can, one foot in front of the other.

13 Mays since G’s tumor diagnosis, we are so grateful we have the time to figure out how to keep walking, how to keep advocating, how to have our children take ownership of their diagnoses.

In years past I wrote out our entire story up to 2013. Since then G had a ruptured appendix and whooping cough. Her sibling has had some other things that are hers to tell. The story goes on. If anyone wants to see that, it’s in 2014, I think, May. I just can’t read through it again today.

We are aware. We just need to figure out what direction our action should take down the road ahead. Because Awareness plus Action equals HOPE. Hope is everything. We’ve seen despair. In May, more than ever, we have to cling to Hope. We will cling to Hope. No matter what.


For information about how to support Neurofibromatosis research, check out ,, or the NF Family Association at CHOP, and  join our G-foRce! CURE NF facebook page.

For information on research for low grade brain tumors, check out A Kid’s Brain Tumor Cure ( ); for other pediatric brain tumor research, check out or

And if you are now singing "one foot in front of the other...soon we'll be walking out the door", you are welcome. ;)

Wednesday, April 19, 2017

Happy Pants, or Celebrating 1/8th Milestones (nowhere near an actual mile, but on the road)

(aka Zen and the Art of Baby Steps)

I am working hard to appreciate little moments, little things. This is a little thing. Microscopic, really…

So a while back I found an old journal of mine, I think I was 13 or 14 when I poured out my thoughts into this little notebook. One funny thing I came across: even then, I thought my legs looked like manatees. Manatees was the actual word I used to describe them. Maybe because I have always been uber-caucasian (people frequently asked me if I was sick, I am so naturally pale), or maybe because my legs were the only part of me with any juice,  I just thought my kind of juicy legs looked like manatees. Maybe this is why I have always liked manatees, I just felt like we were simpatico, somehow…

I like lettuce, manatees like lettuce...I like Florida, manatees like Florida...

And I know, for people who know me in real life, this sounds ridiculous, but as much as I’ve always been on the beanpole side of physique, I have pretty sturdy legs, apparently from my Grandfather’s genes.

I tend to skew a little bit like a cartoon character...This is why even in comics I draw myself wearing a dress, usually.

There is no deep life lesson here, in case you are wondering. I know.

I just have tended to be stupidly self-conscious about my lack of proportion. What can I say, I have some ocd tendencies, and the dis-proportional thing bugs. Running only made my legs bigger—stronger, which I really love, I love the feeling of mightiness I get from exercise—that’s another blog entry about my climb up Mt. Yikes-- but running has not been super conducive to skinny jeans.

First World “Problem”, exhibit A.

But recently, through a weird series of events (mostly involving Survivor Kid’s happiness as discovered in snazzy knit clothing) I discovered that Happy Pants are a thing, and that it doesn’t matter what shape I have—leggings in crazy patterns actually can help me be happy (small “h”, but still happy).

My first pair of Happy Pants were supposed to be a Yeti Homage, but they didn’t fit.  I only bought them for the Yetis. . .

And these knit Leggings did not fit. I was like a miserable human sausage in Yeti Casing. 
This would generally be enough to derail me forever (HOW CAN MY LEGS BE TOO BIG FOR LEGGINGS? PANTS THAT LITERALLY ARE JUST A KNIT TUBE OF STRETCHINESS??), but since you can’t return anything to this particular company (just exchange), and these were more than I would normally spend on leggings (which I had not worn since I was pregnant with firstborn back in 1994), I was committed.

I finally found a Sesame Street-esque pair of pants to replace the Yeti-Fail.

Well, these are some HAPPY PANTS.

When I opened the envelope I had a moment of “what have I done? Sweet Jesus what have I done? “ ala Jean Valjean.   I set them on the pile of random t-shirts I am trying to purge on the cedar chest in my room, and tried to get used to the CRAZY TRIPPY SESAME STREET 1969 PINBALL COUNTING PATTERN THING GOING ON. Yes, the pants yelled at me from across the room every time I walked by.


Now I had these pants, I had to find something appropriately subdued and Coleman-Tent sized enough to cover most of them/me.  Nothing was right.  After about 3 months I found a swingy black t-shirt at Target, bought it a size big, and finally wore the Happy Pants…

In my house.

When nobody was home except the dog, and she’s color blind, right? Aren’t dogs color blind?

Ok, so the secret pants were comfy. I felt…perky. Perky is not in the same time zone as my natural state, so…this was interesting.  While my legs now looked like crazy trippy Sesame Street 1969 Pinball Counting Manatees, I kind of didn’t care.
So what if I’m not exactly 29? So what if I am sturdy in ye olde leg department?

My epiphany?

Leggings are Happy Pants.

This is silly. This is such a small thing, my “hey, I can wear leggings!.” But the other day I wore a pair of leggings with flowers on them to the library. A PUBLIC LIBRARY. And at Christmas I wore Christmasy leggings to my niece’s performance of The Nutcracker. I feel festive and peppy and comfy and yay, and I kind of don’t feel that self-conscious about my shape in these Happy Pants. I wear black leggings all the time now, and feel comfy and boppy and energized.

Placebo effect? Maybe. I’ll take it. It’s a baby step in terms of self-acceptance, but it is a baby step in a very comfy direction.  I remember the first time I wore yoga pants, I had to mentally prepare myself. I am about as flexible as I am perky.  Heck, I remember when I first got SANDALS or wore a sleeveless shirt (I used to be self-conscious about my feet and my weirdly long arms. Yes, I needed therapy. BABY STEPS). Baby steps are still steps.

I have not worn the Crazy Trippy Sesame Street 1969 Pinball Counting leggings out in public yet.


But I might. And I bet other people will feel happy when they see them. Maybe only happy that they are NOT wearing such crazy pants, but maybe these crazy pants will make someone else smile, too.

And hey, sharing joy is one of the best things we can share, right?  

Sunday, April 9, 2017

Me Vs. ChocoBunny

So on Saturday, I made a vaguely top secret trek to the best chocolate place in Jersey—the Fudge Shoppe in Flemington. 

(As soon as I walked in the door at home holding a plain, unmarked brown bag, survivor kid said “HEY, YOU WENT TO THE FUDGE SHOPPE?” Ahem. Top Secret. Ish.)

When my survivor kid was in the early years of her journey, we drove by the little barn-like building that says FUDGE in giant letters every time we drove to Philadelphia for treatment or scans or oncological whatnots.  One day we stopped in—and the delightful older gentleman who founded this store offered us free samples fresh fruit covered in chocolate, and we were instant converts to the Church of Fudge Shoppe.

As part of my radical plan to “Take Back April 5”, I thought about going back to Flemington (a 35 minute drive) to get the darn giant chocolate rabbit that I had vowed to get if the chemo trial was not a fail.  But the day was busy, and a special trip for something way too large for a random day just didn’t fit my schedule.  But the idea stayed with me during my pre-Easter pilgrimage yesterday…

And there, now within reach (not on top of a high shelf, as it used to be displayed 5 years ago), was the giant ChocoBunny. That rabbit is magnificent, literally 3 feet of molded milk chocolate old school awesomeness, made with a lot of love.  Decorated with buttercream accents and candies attached to the bunny’s basket, the rabbit stood sentinel over all the smaller chocobunnies and crosses and dinosaurs (yes), Easter pops, and filled eggs of every variety. 

For five years, this beautiful ChocoBunny stood as a sad symbol of our chemo defeat.

But yesterday, as I stood in front of ChocoBunny, clutching my basket already too full of treats (life lesson, DON’T go to the Fudge Shoppe before breakfast), I just thought, "wow, that is pretty awesome to behold, but at $250 it is um, just nice to behold". 

(Five years ago I had no clue how much this edible art COST!! YIKES! But probably still worth it.)

Thus I continued choosing regular Easter hoorays for my family while humming a happy little hum.
Like these. These are from the Fudge Shoppe Webpage.
They are so delicious. Sooooooo delicious.

I am still a bit agog at the grace of this moment, "getting over" Sorafenib. (As long as no doc says something stupid like, "oh, we knew there were problems with that study". Just not that one again.*cough. That was not a great moment.) But really—FREEDOM!


I didn’t need the massive ChocoBunny to prove that the disastrous trial is just a memory.


Truthfully, the free sample of choco-covered pineapple—the pathway to my original conversion to this chocoshop-- admittedly did not hurt my newfound zen.

So in this step in my attempts to keep Movin’ Right Along, it’s Me- 1, Random Bad Associations -0. And since EVERYONE in my family is going to end up with Fudge Shoppe chocolate, it’s really a win for all.

And a win that involves really good chocolate from a little family business—THAT is a win indeed. :)

Wednesday, April 5, 2017

Taking Back the Day

I had a radical idea yesterday morning, during one of the 57 drives I do each week.

I can take back April 5. 

Take. It. Back.

In our family story, April 5 stands as one of the Quadrangle of Worst Days Ever that we had (right up there with Diagnosis Day and Possible Malignant Transformation Day, nearly tied with Progression After 5 Years Off Treatment Day…). The day haunts me.  And Facebook keeps helpfully reminding me of how nervous we were before April 5, 2012,  how desperately sort of hopeful we were, even though we knew G didn’t seem to be doing well.

5 years ago, April 5’s MRI obliterated our hope.

I know. That’s a long time ago.

Here is the problem: I am a History teacher. Remembering the past is my JOB. Literally I get dollars to dissect the past with nearly 70 students each day.  The great irony of what prolonged stress does to memory is not lost on me.  Thank God for Post-It notes. But the varied dates of medical smite that fill a decade and more of our family history—I can’t shake those memories, and trying to understand them, trying to gain some kind of perspective is the only way I know HOW to manage them.

Or denial/avoidance, but that is another story.

Our neuro-oncologist used to routinely ask me to “tell our story” to new medical students, knowing that it was my weird party trick, being able to recite a litany of dates/chemo fails/statistically improbable complications/more dates/random sarcastic jokes/things that only happened to our G/dates and dates. I can’t remember what I did yesterday, but the medical yikes—I remember.

So my drive time idea was pretty radical.

Take back the day.

Some days can’t be taken back. Diagnosis day is always going to be tough, it’s the center of our personal timeline of Before Tumors and After Tumors (we are now in the Year After Tumors 12.5). We remember it as a survivorversary, but it’s still a tough one to navigate each year. Progression Day is also tough. Restarting EVERYTHING with a teen who could understand things much more than a 6 year old could was brutal—especially since I had to be the one to tell her that we had to start up chemo again, after brain surgery the next day. I am not sure I know how to reframe that memory of the moment with my child in a waiting room.

But April 5—I can take that day back.

Because yes—it was horrible. It was a dark, miserable, son of an unprintable punctuation marks in a row kind of day. It was a day ONLY describable in 4 letter words that need to be spat out. BUT…

Today it doesn’t matter.

Unless docs talk about that trial in what seems to me to be a cavalier manner (*cough, which never, ever ends well), it doesn’t matter to our family.

Because 5 years later, G’s tumors look better than they have in years. Not that tumors really ever look good (“spring ’17, the tumors are wearing a subdued palette of less enhancement and maybe even slightly less mass effect! Stunning Detail!”)—but the horror of that day IS a memory. The next chemo shrunk that horrible, catastrophic growth. Nothing has been easy since then—G’s school challenges and ruptured appendix and whooping cough fest were all AFTER this day—but WE ARE STILL IN THE GAME.

And that merits taking back the day.

I am not exactly sure how to do it. Wednesday is our “nobody home for dinner” day, and somehow in my mind taking back a day always involves food. But even if I just try to remind myself all the day, Hey, WE ARE STILL IN THE GAME. G IS DOING GREAT. CADBURY IS IN THE CLOSET. WE HAVE A DOG. IT’S SPRING. I JUST GOT A SWEATSHIRT WITH HAPPY BIRDS ON IT. Pretty much anything to stay in the moment of today…

I consider that a win.

So we’ll see how it goes, this radical experiment of mine. Can I NOT wallow? Will I eat my 3rd bag of Cadbury? Does anyone else in my family even remember the day? Does that even matter?

But come hell or high water, I am going to try to take back April 5, to have it just be a springy day of promise and potential. And Cadbury, likely.

Taking back the day.

Let’s do it.


So I wrote this last night.

I woke up this morning. Birds are singing. Dog pooped right away (without needing to sniffle every blade of grass on our street).  I only had to yell at 3rd born three times to get her out the door for school.

And you know what I realized? I am the only one here bound by that day. Nobody else in the house remembers. And as I walked the dog, and felt some of the old erghleyugh rising up, I looked at the trees, the birds, the spring flowers starting to bloom, and I know that old April 5 is just that. Old.

And FB reminded me this morning…yes, that day was awful. BUT—the rememberings are all posts by our friends and family who were hurting FOR us, praying for us, rallying hope and good will in our direction—usually marked with pictures of my smiling warrior.  THAT is what today needs to be about. I know those folks will likely all get reminded about this today too—
hey everyone. this is Kristin's sister Laura posting this for her: G's scan was not good... Thank you everyone for praying. We are going to Plan B and G is actually taking it remarkably well...we are trying to be super positive for her.

Thank you, friends and family.  We love you all so much.

Today I WILL let myself off my Lenten car silence thing –there will be music. I will eat Cadbury. I will take this day back as the day our friends and family stood with us and held us up when we were falling.

We’ve had 5 April 5ths since that bad one. I claim those as a win.

NOW let’s break out some Cadbury and some Safety Dance and get this day going.

Sunday, March 26, 2017

Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.
The only time I ever celebrated cheating. ;)
That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy
allowed in G's brain) and Research
genius Dr. Resnick(and his daughter), at Camp Sunshine.
Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 
For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.
yeah, not so much. I had no issue with
Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste it.

Thursday, March 23, 2017

Me, the Big Rock, and Mount Yikes--Movin' Right Along--Again

She Bloggeth!

Ok, so that is a little melodramatic, but subtlety has never been a strength of mine. My loud face gets me in so much trouble at faculty meetings, I legit have to stare at my notes whenever any person is talking—because even if I say NOTHING, my stupid loud face says all the things that one should never say at any meeting. 

But I digress. I haven’t even started, and I am digressing…this does not bode well.

BUT—I am determined. Words are both powerful on their own, and empowering, and my inability to write ANYTHING after telling our family story two or three years ago alarms me.

Our penchant for falling into statistically improbable bad stuff just finally caught up with me, I guess, and I lost all my words.  For the last twelve and a half years I have been pushing a Big Rock around. Sometimes I can really get it rolling. Sometimes I end up squished under it for a bit (ok, for years at a time,  2004-2006, and then for a couple of months in the summers of 2008,9,10, then 2011-2013, then June 2014, then three months of 2016…*cough).

 Recently, I just got stuck. Kind of like this:
Obviously I did not fill the last few years with art lessons.

And by recently, I mean for like, two or three years. Maybe longer.

Last year my Survivor Kid had whooping cough, technically “pertussis-like syndrome” since she had been vaccinated—hers was a “mild case”.

On a couple of occasions last winter/spring we thought we were going to lose her.  Like, in my kitchen. Mild my fat fanny. I can’t imagine how horrifying the full blown version is…

For whatever reason, that particular pitfall on Mount Yikes really derailed me.  We had made it through brain tumor hell AND high water and a stupid regular illness FOR WHICH SHE HAD BEEN VACCINATED could make my kid choke and turn blue in front of us?  The ER doc who finally gave us a diagnosis was remarkably understanding about why the two psycho onco parents in front of her were in full blown HELL NO mode.
mom note: the whooping cough booster seems to last about 5 years, all might want to check on that. And just because one HAS whooping cough does not mean they are now perpetually immune. Fricka Fracka...
Even a year later, Survivor Kid’s little sister still gets twitchy any time Survivor Kid coughs.

This situation put about 4 tons more on the Big Rock, and added 15k elevation to Mount Yikes.  Mount Yikes was already pretty steep, school was tough, work was tough, life was life. Everyone has tough. That is what life is…we certainly have zero monopoly on Mount Yikes…

….And then we lost some of our long time BT and NF friends in the fall. I still don’t have words for that. So I shall just speak that dark moment, that moment that flattened me for a month, and try to keep pushing up the hill.

Since early fall I have been working through things, really focusing on exercise, and yoga (remarkably helpful, even 20 minute “Yoga for The Ridiculously Inflexible” videos that I do at home, by myself, where only the dog can laugh at me.  I talked to a doctor, and got some help getting my personal chemistry back in place.  I am trying to read things that will help or inspire me—even if I haven’t OPENED Full Catastrophe Living, it’s waiting here to be read.  I am talking to God. I am making an effort to connect more with other people, because I kind of moved into a bit of a cave on Mount Yikes during the last few years.

It is a work.

But I will do it.  And – well here I am. Writing something while both of my girls are at their new schools, doing great. My son—at his school, doing great (no random broken bones in January this year, well, not for him, just for third born. But we managed it.)   I am planning a two day getaway with Dave for the summer, it’s been two years and we need to just have a couple of days near the ocean, just being. 

The work is working. The Big Rock is slowly moving.

I still have trouble reading my words about Survivor Kid and all our family went through. We still live with the late effects of that journey every minute of every day. I read things I wrote years ago, in our life “Before Brain Tumors”, and I almost can’t believe that I wrote them.  Nothing like being at a youth group thing and realize folks are acting out a funny skit you wrote 42,000 years ago.  I used to be really sharp and funny, not just scary.   And you know what, I can work back there again. This is a first step.  Not perfect. I am trying (as always!) not to let the perfect be the enemy of the good.  Let's do this.

Big Rock has gotten mossy from sitting in one place for so long.  So let’s get moving.