To the creators of "Warrior Eli", a few things you should know

The story of Warrior Eli went viral on Mother's Day--telling of a mother of 11 who died in an accident just before giving birth...one of her children is a relapsed cancer survivor named Eli.  By today, this story was revealed to be a hoax. 


To the creators of “Warrior Eli”, whoever you may be,


I don’t know why you thought it would be fun to create an elaborate myth about a child with cancer. Maybe you were inspired by Lifetime movies or Grey’s Anatomy or some sort of dramatic fiction that makes childhood cancer seem c’est tragique. Maybe you thought it would be funny to see if you could get your sad story about a young mother of 11 dying just before giving birth, while one of her young brood battled leukemia, to go viral. You don’t seem to have wanted money, since you asked for donations to go to Alex’s Lemonade Stand, a legit charity for kids who really do have cancer.

Honestly, I don’t really give a crap about why you did this.

And honestly, this isn’t the first time I’ve witnessed this. I, too, have believed a liar in the past, sent gifts to a phantom child. I learned from that experience.

Now it’s your turn to learn a few things.

One, most people are good, deep down. Parents of children struck with catastrophic illness can be some of the kindest, most generous people on the planet. This isn’t to say we need to start handing out halos –people are people, no matter how smote-- but folks who have walked through fire are the first ones to hand out buckets of water, if you know what I mean. When they hear that someone is facing the same tragedy they have faced, the FIRST instinct is to help, to assure the new family that they are not alone. They hurt FOR each other, because they so intimately know that pain that this kind of diagnosis brings. Even though it hurts to engage with other families sometimes BECAUSE of this shared pain, these parents do that.

So when you lied over time about “Warrior Eli”, you hurt real warrior parents. You should know that. You took the grace that these parents have to give, and you made a mockery of it.

Shame on you.

Second, your lies, your desperate appeals for the sympathy and concern of strangers hurt the real warriors, the children truly battling for their lives.

Last week we spent about 5 hours in the Alex Scott Day Hospital, named for Alex of Lemonade Stand fame, named for the money raised by the lemonade stands that funded this amazing facility. I sat there, watching poison drip into my child, and I had trouble believing the evidence of my senses. Yes, we were in the hospital. Yes, G was getting her port accessed (which means a ¾” needle stuck in her chest, not sure your “research” for “Warrior Eli” covered that). Yes, nurses double double checked G’s ID to make sure she was getting the RIGHT poisonous cocktail. Yes, my warrior smiled and gave me a thumbs up even though she was so scared, so scared about what the chemo would do.

The entire afternoon was surreal. A friend came to visit us, and I am not going to lie, I am always happy now, after knowing about people like you, people who lie about their children being sick, I am happy when someone sees us in clinic, sees my child like this. If I can’t even believe this is happening to us, why should other people?

You hurt the credibility of real families battling. You made us doubt when we should be feeling compassion.

Shame on you.

As a side note about Alex’s Lemonade Stand, who you dragged along , maybe to give your lies more credibility?: Alex was a true warrior. Because of her, kids like MY kid have a better place to receive treatment. When Alex was battling, the day hospital was a large room with a ring of chairs around a nurses’ station. Now children can have some privacy, if they want. They have working tvs and video games, there’s a playroom and a little kitchen where they can get a healthy bagged lunch while they are getting treated. Alex didn’t live to see this. You insult Alex and her work and the legacy her family has worked so hard to foster.

SHAME ON YOU.

Finally, you need to know that childhood cancer isn’t a means to getting noticed, or a way to look noble and cool. It’s a battle for life. It’s not pretend, or a play, or something you can treat lightly. You want to look noble and cool? Go HELP kids with cancer. Use your creative energy for something GOOD. You used pain and suffering of children for your own satisfaction.
Shame on you.

I don’t think there will really be any tangible repercussions for what you did. You simply lied, and people believed you. You didn’t get money, you didn’t ask for anything, from what I can tell. You simply lied, and stole the emotional resources and compassion of people that could be better used for REAL catastrophe. I do hope that maybe some corner of your mind still possesses a shred of decency, and that maybe, just maybe you’ll take some time and volunteer for Alex’s Lemonade Stand, or in a children’s oncology ward, or with Team In Training in honor of “Warrior Eli’s” leukemia. Maybe you can try and learn just a little bit about the deep truths discovered when you spend time with a child fighting for their life.

If not, then shame on you.

Tsunami of Nice

Well, we are 4 doses into Tumor Battle 2012. TB12 kind of whomped any other feeble New Year’s Resolutions I might have conjured up – and really, how many times can everyone read “this year I will write in this blog more”? . TB12 trumps all.

Only 600 some odd doses to go…if it works…sigh…

So far we are managing through
1. bedazzling everything in sight (t-shirts, chemo “diary”, anything that sits still too long)
2. avoiding all of humanity whenever possible
3. wild Just Dance parties (which are not all that well attended in light of point #2)
4. very loud playing of Green Day in the minivan, which apparently has a Killer Sound System. Nice.
5. random acts of carbohydrates
6. extreme consumption of Christmas chocolate.

And this is just how I am coping as mom!

We’ve had moments of every make and model over the last several weeks. Honestly, spending the holiday with the Ghost of Chemo Future was kind of a bummer. There was almost some relief in STARTING the process for real, after all of the nauseating ups and downs of the last 6 weeks. Laughing, crying, yelling, terror, jollity, love, hate, safety dancing…I feel like we live in a Telenovella but in English.

Even so, I really was not prepared for the Tsunami of Nice.

Since December 5, our own personal Day that Will Live in Infamy (along with 7 years’ worth of similarly woeful days, a veritable Whitman’s Sampler of Medical Woe), we have been overwhelmed by the Tsunami of Nice. Thoughtful Cards. Meals for our family (that we can freeze for hospital days). Tchotchke for G that make her smile and giggle and delight. Notes of encouragement. Random acts of chocolate (there are Cadbury enablers out there, and you Know who You Are!). Prayers. A sparkle Mary (don’t ask, but it was very heartfelt and given in love). A phone call from a Grammy nominated musician who happens to be one of G’s favorites. Hugs. Non-hugs from people who know that hugs make me cry. Text messages. Carpools. Normal things that in this oh-so-not-normal moment become hugely important to us.

A Tsunami of Nice.

We are so grateful. It’s hard to express this (again, see point 2 above), I hesitate to talk to people because I never know exactly what moment is going to be the one to trigger my own tsunami of tears. Some days I can be a medical encyclopedia, coolly relating facts & findings and whatevers, the next day, heck, the next MINUTE I am sniffling when trying to say the word Oncology. It’s ridiculous and embarrassing and whatever. And really, I know a LOT of people don’t know what to say to us. We are living every parent’s worst nightmare, and there is nothing good to say. So I hide.

But because of this, this awkwardness of communication, this painful everything, we never really get to tell people just how grateful we are for the outpouring of kindness to our family and especially to G. We really do feel like a flood of goodness is helping us float along through this massive yikes.

So thank you all…

I have learned, too, that stress makes me stupid and very unfocused. So I have a lovely pile of good intentions here that rivals the pile of thank you notes I could and should write to everyone. I just forget…everything these days. This makes for a very interesting time at work, considering I am a history teacher…but anyway, please know we are so grateful.

In all of the horror of what we are fighting – and sometimes, the reality of what this is just threaten to swallow me –but in all of this horror, we are so honored and humbled to see how each individual act of kindness and love, even from people we don’t really know, comes together to create this massive Tsunami of Nice.

We just need to try and ride this wave through the next few months, and pray that it fuels G’s mighty chemo ninja skills so she may utterly prevail in TB12.

Thank you.