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. ;)