Sunday, May 19, 2013

Losses and Lessons

May 19, 2013

The summer of 2007 dawned bright…to be free of school was a joy, 3rd grade had been a nightmare for G from start to finish. One of G’s teachers(along the resident from our first night at CHOP) are people I have to often pray that I can find the strength to forgive. Even now.

But summer was upon us, the kids finished up their activities, Andrew started summer ball, G spent time hanging out with our NF buddy, Sandra. On June 27 they went to a pottery painting place together; on the way home Sandra and mom Marta started a round of the Silent Game, I guess G’s Wall of Sound qualities finally got to them. Heehee.

Sandra and my kids, May, 2007
And on July 2, Sandra passed away.

My children knew Sandy was sick, but they didn’t know she was THAT sick, because Sandra LIVED every moment she had. If ever a person knew how to seize the day, it was Sandra. We made it through her wake and funeral—Genna read a poem about Sandra in front of a packed church-- and then we tried to figure out how to make sense of what NF can do to people. It’s nonsensical, how horrible NF can be. We missed Sandy so much.

But for Sandra, then and there we resolved to NEVER give up. She never did. How could we?


Life off chemo was still plagued with fear and full of challenges, but there were bright spots: Genna went to oncology camp for the first time, the greatest thing EVER. We had tried to send her to the church camp my son went to, but I had to stay with her, and the social and physical challenges there were just too much. At onco camp, Genna was a healthy kid. Everyone there was comfortable (as much as you can be) with the context of participation, if you know what I mean. THERE, G was not the sickest kid.

And they got my anxiety ridden child to ride a horse! Try a zipline! (ok, she was mad about that) Swim! Boat! Perform in a talent show!

It was like a miracle, the things they got her to do.

By the time fall rolled around, our 3rd anniversary in bt world, we were starting to feel a little more peaceful. G’s teachers spoke to me before school started about how to make the year work for G…things were just better. I finally felt ok only going to the hospital every month or so. Dave started running, seriously running as part of his “get myself healthy” thing, he ran to fundraise for the Children’s Tumor Foundation, which made us all feel like we were doing something tangible to help find a cure for G.

Genna had started asking more questions about her tumors. Now 9 years old, she wanted them GONE. We had to keep trying to explain to her that they couldn’t get gone…they just couldn’t. This made her very sad. That sorrow hurt us so much, but what can you do? We just had to keep trying to embrace each day.

So another year is by us. A year off treatment, a year of normalcy within a context of yikes. A year where I realized about 47 times that a) I lost a lot of my “fuse” in the last 2 years. Stupid things get to me even faster than they used to b) my house was sorely neglected for 2 years c) sometimes the after is harder than you might think.

We sent a card to Dr. B…Genna made a book of poems, jokes, and pictures, and I sent along a letter. Anniversaries are good for saying what needs to be said.

I wish I knew why it makes me so emotional.

The last 3 years are such a mixed bag of sorrow and joy, pain and triumph. I’ve said it a million times, but we have met some of the most wonderful people in the world through this. At the same time, we’ve lost friends, big and little. Every time we lose someone, every single time, even if it’s someone I only know through the internet, a piece of my heart breaks. And this year, with Sandra…well, the magnitude of it all hits me again…the magnitude of that day in August 2004 reverberates through the sorrow of loss.

For that was a day of terrible loss for us. We lost the life we had. We lost dreams and expectations, hopes and plans. The pain of it becomes fresh and raw again on anniversary days. This far in, we have so many days of meaning…well, it explains a lot, doesn’t it?

Yet again, that day opened a door to a world we never knew before. We have learned so much, not only about the biology of brain tumors and the vagaries of NF, but about generosity and kindness. We’ve discovered how many ways people can be enterprising about helping other people…through making cross stitch quilts, writing custom songs for kids, taking professional portraits in the oncology clinic, hosting parties with piles of neon tchotchke, organizing a stuffed animal drive for cancer kids in Africa, setting up a day for kids to see the circus or ride a boat around the Statue of Liberty, mailing cards and pictures to a little girl who stands by the mailbox at the appointed time each day, waiting for the mail truck to come.

If we hadn’t passed through August 30, 2004, we might have gone through our whole life not knowing these things. How much poorer would we have been for not knowing?

It’s a revelation that unveils slowly and painfully…but it is one that has changed who we are as a family.

Certain things are a priority now. Family time is number one. Standing with our friends and those who fight epic battles against tumors and cancer and NF is monstrously important. Dave is running 13 miles Willingly in 2 weeks for Genna, Rosie, Sandra, and all of our NF friends. We will be at Sandy Hook in 5 weeks for Timmy’s Tour de Shore… November 4 we will be running/walking the Race for Hope in Philly…it’s just so important, I wish I could convey how important it is to be at these things, to stand there as a part of something bigger than our family and our struggle, to know that when we stand together we may not beat the monster, but we will defy it in strength and unity.

I never ever thought Dave would be a runner, or we would know A family who lost a child to cancer or to NF. Now I can’t believe how many families we know…

The pain is sometimes almost too much to bear…because in every child that is lost, we see our own, not in the distant fears I used to have as a mom, but in a fear borne of MRI films and research about the missing tumor suppressor gene in my little girl. It’s like realizing you traveled on a plane that crashed in a fireball on its next flight…there but for the grace of God…

The future is a question mark made of whens, not ifs… but statistics have never held true for G, anyway. She has never gone according to the rule book for NF, optic glioma, ports, anything. She believes implicitly in her future full of hope.

…Life does go on, even if we can’t fathom how it can keep moving in the face of our grief and the suffering of a child. And in the same breath we see flashes of joy amid the grief. Those moments seem brighter, somehow, made more luminous by the context of sorrow? We treasure every precious joy.

So we are 3 years in. Genna has to fight so hard on many fronts. We are grateful, endlessly grateful to all of you who are in her corner. And as always, we are so grateful for the privilege of fighting another day.

As the New Year dawned, 2008, I pondered what it meant to be a survivor—this is EPICALLY long, but I think it just says so much of what I am so inadequately trying to express in this blog….

We are survivors.

I sometimes feel guilty saying “we”; after all, it’s Genna who does the hard work of survivorship. But since her battle began so young, she doesn’t fully understand the stakes. That battle we fight for her, the battle of knowing, of knowing too little and too much in the same gasping breath, of searching for answers and begging for ignorance.

We are survivors.

I am unsure, though, how…not so much unsure of the doing—Genna’s scars are a reminder of every painful moment of the method of surviving—but more unsure of our own credentials. Such is the ambiguity of a “benign” tumor. Genna is stable. But the tumors are all still there. The elusive NED, No Evidence of Disease…that will likely never, ever be an acronym we get to make up songs about, which is a shame, I love acronyms & songs and NED is much more fun to sing about than chemo and blood counts.

So Genna IS a survivor. But what does that mean in our world? I know, it probably seems silly, if we’re surviving who cares what it means? However, the last few years have made me think about EVERYTHING. I’ve always been obsessive, but the diagnosis of a brain tumor put my conflicted mind into overdrive.

You see, in the beginning, I felt almost guilty. Genna’s tumor was BENIGN, after all, NOT cancer, not the killing kind of tumor—I know better now. I felt guilty participating in an online support group for Pediatric Brain Tumor families…compared to children with the Bad “Omas”, medulloblastoma, diffuse intrinsic pontine glioma, glioblastoma, anaplastic astrocytoma, PNET, ependymoma, our optic glioma seemed almost like a brain tumor wannabe. How could I be dying a thousand agonies of grief when my child’s tumor grew slowly, without spreading throughout her little body?

Make A Wish? That was for REALLY sick kids, Genna just had a brain tumor. A BENIGN brain tumor. Her hair didn’t ALL fall out, it just thinned. She never lost tons of weight on chemo. Sure, she was having horrible insomnia, random pain, severe vision loss, crippling anxiety and fits of OCD, but she wasn’t dying, so it wasn’t really that bad—right?

Denial should not be underestimated as a survival mechanism.

Conversely, I felt angry when people downplayed our shock and devastation because Genna’s tumors were caused by genetics (i.e. we should have expected tumors!) or because her tumors were Benign. “Oh, so it’s ok?” one mom hopefully asked after Genna told them she had a brain tumor and I explained that it was benign. When I tried to clarify that benign is still a train wreck, I sounded a little Munchausen’s by proxy.

It’s a tightrope, one that I am still learning to walk.

But even when I wobble and waffle, we are survivors.

Back on the very, very first day of all of this, I so hoped for survivorship, for having this whole surreal horror be a memory that we could give inspirational talks about. You know, the kind with beautiful music, glistening eyes, and a triumphant flourish at the end. Kind of like a children’s hospital commercial, a story full of hope and happy endings.

But you know, not all the kids in those commercials make it…there are angels there, little faces to remind us how tenuous and costly survivorship is.

People say we are so strong, they could never do what we had to do. This is a terrible misinterpretation…for I Could Never Do all of this stuff…everyone who knows me knows I am a certified wimp. There is no human being more timid than I was back in 2004. The old Monty Python quote, “Run away! Run away!” wasn’t a punch line for me, it was my guiding philosophy, no joke.

But when catastrophe strikes, it’s not really like you have a choice. We didn’t round up our mighty steeds and say, “AHA! The hour has come at last for us to prove our valor! Arise, and let us go forth and smite the Tumors!” No. We cried. We prayed (or asked others to pray for us, in the beginning I was too mad at God to pray, I would talk to Jesus, but God was off limits). We read books we didn’t understand. I begged someone to just tell us what to do. But ultimately we had to decide; we had to DO. If that’s strong, well, I guess we are. But if so, then maybe I look like Heidi Klum, too…

Sometimes to our own surprise, we are survivors.

I hope we’ve gained some wisdom through all of this. The thing is, we aren’t done. How can we claim survivorship if the work of surviving is an ongoing process? The issues left in the wake of a sleeping tumor are a daily trial. The brain is pricey, exclusive real estate. There just isn’t much room for anything else, let alone a condominium complex worth of errant cells. Our story isn’t complete. We haven’t reached “happily ever after”, and I thought that was the mark of survivorship…making it to “happily ever after”.

I never expected a marathon. I hoped for a cure, I never knew “stable” could substitute for cure.

So now I feel guilty when I don’t feel happy enough about “stable”. I try, I really do. It’s so much better than the alternative…but the scars are so deep now, I know that stable can shift in an instant and we’ll be sliding down into the pit again. I want a cure.

I want survivorship without strings attached.

But Genna is genuinely a survivor. Things she can do now, I truly never thought she’d be able to do after those dark months of 2004-2005…and after the even bleaker months of 2006, when I thought we had crossed out of imitator and into the Real Deal…well, every single thing that G does is a victory, the mark of a survivor.

That’s not to say we have erected a pedestal for her in our home. She drives me berserk, I bug her. We disagree on snacks & when a shirt is officially too small. She needs to constantly talk to me, I need some quiet. She gives me Diva Attitude and I tell her to do things Because I Said So. She is a 9 year old kid who likes books, coloring, and telling jokes. She is a normal kid, and I am a trying to be normal mom.

This is what survivors look like at our house.

When I go back to the hospital now, the emotions of our experience flood over me. Pressing my fingers against the cold glass of the clinic playroom windows four floors above the courtyard, I feel trapped again, like time is passing by while we fight in a parallel universe. I know our battle is on standby, but still…I can hear it, smell it, taste it in this place. It’s not just mental, it’s tangible. The battle LIVES here, it’s not just a story.

I can joke with nurses, make up cheerfully sarcastic commentary—but it only barely drowns out the wailing of my heart.

Still, here, at the hospital, Genna IS a survivor. She is taller than last time; she has new animals for her guessing game with nurse Mindy; she has a full head of curly hair and eyes that never seem to pick up on which kids are the patients, which in oncology isn’t always a difficult visual judgment to make. Absence does make people happy to see her, smiles and hugs await her at every turn. Here, she is the victorious champion returning to the scene of battle…

…even as I prepare my list of questions for the doctor and wonder if that 2nd cup of coffee is going to make me sick if the scan results are bad.

WE are survivors.

So we move on. I try to find the funny parts in our journey, but an awful lot of brain tumor stuff just isn’t funny. Sometimes I can’t talk about it. I get weirdly emotional about old pictures and school assignments and songs on the radio. People get uncomfortable, they cautiously ask how Genna is and brace themselves for the answer…and usually now I can say “she’s doing really well” and not be paddling down the river of my own denial. But if it’s near scan time, or she’s had a hard week with the ongoing issues that come with whomping huge tumor swirling through her brain…well, then, sometimes I tell people how we Really are. I can’t help myself. It’s not fair to them, not fair at all, and I feel bad later, bad that I was so selfish and bad that I have such answers to the simple question, “How is Genna?” Why can’t I just say, “Fabulous!” without it being my stock sarcastic response?

But I know…survivorship isn’t always pretty. It’s hard earned, it’s gritty, it keeps you up at night and throws you to the ground exhausted. It carries you to euphoric heights after crushing you to the lowest pit. Survivors fight for every inch, every molecule of their victory, scarred and battered though they are.

We are those survivors.

Our story isn’t done. But today, in this moment, we cling to all we love…we live, we do laundry and homework and fill prescriptions and leaf though the LL Bean catalog and through medical abstracts that may hold the key to our future…and in doing so…

We survive.

Just before Christmas, I had finally asked Dr. B about Rosie’s headaches. Rosie was 5. Her eyes had always checked out fine, but I asked Dr. B how many times Rosie had to complain of a headache before maybe we scanned.

She scheduled the scan on the spot. January 17, 2008, Rosie would have her first MRI.

And we would, for the second time, be one of those 11 families that find out each day that their child has a brain tumor.

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