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Because it still isn’t fair

May 26, 2010

Tonight I stood in my garden while Topher gave Piper her bottle and read her a bedtime story. I watered, I sipped wine. I thought about how our tomato plants are so much smaller than my stepfather’s tomato plants, but how much more fruit they’ve produced, relatively speaking.

I look at my tomatoes, and I decide to leave the three that are orange but not quite red for one more day and use them in my pasta sauce tomorrow. I think about how the plants keep producing fruit even though they look so battered, the scars of their battle evident on every leaf. In the life of a tomato plant they’re really rather far along these troopers of mine. And they’re still fighting back, being productive. I hope I’m like that when I’m rather advanced in life; even if you can see the scars at a glance, you’ll also see the fruit, see that I’m still working and fighting.

Piper’s life is so fresh and new, she has no battle scars yet. She is nothing but perfection. We are so blessed.

When I water our little vegetable garden I always water the flowers that we planted for Layla Grace. Piper likes to play with them, they’re snapdragons. Tonight I’m excited because they have blooms again and a couple of weeks ago it really looked like I had killed them, like I do every other flower I’ve ever planted in my whole life. But instead of despairing and giving them up, I did what my Mother told me and snapped off the dead heads, watered and waited. They came back.

My friend Jill, author of one of my favorite blogs and one of my roommates at Blogher in a few months is working very hard to get the word out about Baby Sam a 6 month old heartbreaker with a mohawk waging his own battle against Stage 4 Neuroblastoma. Baby Sam was given a 30% cure rate at diagnosis but he tolerated his first round of chemo well and is on the second. He’s fighting hard. His parents are fighting hard.

His Mom had to quit her job to care for him. Sam was approved for Passport (medicaid) but could still get dropped and his parents want to keep him on Cobra because there may be an issue with having a waiting period due to a pre-existing condition imposed should there be a lapse of even a day.

This hits home for me. I don’t talk about it a lot here, but Topher and I both have medical conditions that make going without insurance for a single day one of our worst financial nightmares and something to be avoided at all costs. And neither of us are ill at the moment. Sam is in the hospital already, getting chemo.

That’s got to be one hell of a waiting period.

So, what Jill’s done is incredible. She’s gotten some amazing companies to offer some really amazing prizes for anyone who donates $5 or more to Baby Sam’s cobra fund. If you give and want to enter the drawing please make sure that you comment as instructed, and check out the opportunities for extra entries if you’re on twitter and/or have a blog to help spread the word.

Jill’s goal with this fundraiser was to raise $1,000 to cover a month of cobra for Sam (his parents aren’t currently eligible for private insurance due to pre-existing conditions of their own) by June 11th when she’s drawing for the prizes.

She raised $3,000 in 5 days.

Her new goal is $4,500 by June 11th.

We can’t save them all and I’m not saying that we can.

But this illness scares the shit out of me. Layla was Piper’s age when she was diagnosed, and now she’s gone. Baby Sam was 4 months old when he was diagnosed. There were no real warning signs for these families. This illness, this tragic, heartbreaking devastation just happens like a trainwreck. I can’t imagine the emotional and mental bandwidth required to deal with the logistics of the situation, let alone the reality of a 30% cure rate. Because what that really means is a 70% mortality rate. For a 6 month old. With a mohawk.

Can you tell I’m fixated on the mohawk a little bit? Well go look at it already!!

So we gave a little. And if we win something that’s great but if we don’t and all we paid for was 5 minutes of life that Sam’s parents don’t have to spend wondering how they’re going to pay for a fight he may not win, that’s more than ok with me.

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6 Comments leave one →
  1. May 26, 2010 9:04 pm

    Having only recently connected with you, I am going through and reading old posts to catch up on the situation. And I am crying. I cannot possibly imagine the pain and torment those parents are going through. I can, in a way. But I can’t because I have a healthy child. My daughter takes a class @ the baby gym with a little boy (17 mos) who is fighting a very aggressive cancer. I don’t know the specific type. He’s going through chemo, has had multiple surgeries. When I talk to his mom about it, my heart just breaks for what that little angel has been through. And yet he is the happiest, most joyful child I have ever seen. He’s tiny and fragile compared to his playmates. He’s bald and has scars from his surgeries. But it doesn’t stop him from enjoying life. I pray for his family daily, and I will pray for Sam and his parents. And I will make a donation. Thank you for sharing this.

    • May 26, 2010 9:08 pm

      Elizabeth thank you so much for helping! It really is hard to fathom and I pray every day that this is the closest my family ever comes to this sort of thing. There’s just no explaining it. Thank you again for helping and thanks for reading!

  2. May 27, 2010 7:57 am

    You rock. so. hard. Thank you.

  3. May 27, 2010 8:06 am

    This made me a little teary-eyed. Having a sick kid is my worst nightmare. Honest. I wish I could save them all. Jill is doing such an amazing thing. I wish we could all harness our “powers” for good. Maybe we could help a few parents sleep a bit easier… for, you know, the five minutes that they probably can sleep at all.

    Thanks for this post. It is beautifully written.

  4. May 27, 2010 11:20 am

    Mae, for the last four months I have made the decision NOT to read sad child-related stories. I have listened to them. And have not let myself go there. But, when Jill posted this, I caved. And, I am still unsure of whether or not that was the right thing to do for me, but I know it was the right thing to do for them.

    This is an amazing story and Jill is rocking this effort. I swear, Blogher has no idea what is coming when you guys check into your hotel room.

    Amazing women, doing amazing things will in fact change the world. Even if its one child at a time.

    kisses and hugs.

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  1. c’mon pooksville peeps – let’s #helpsam!!! « last train to pooksville

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