Cancer, Children, Denver

THIS IS HOW WE DO THINGS IN JERSEY…..

Monday Emily had her MRI.

The 1st of 3 long days of testing to finish her cancer treatment. We’ve been visualizing, praying, waiting, hoping and anticipating THESE 3 DAYS since she was 1st diagnosed in November 2009. It seemed so far away at the time and now it’s here. I can barely contain myself. It signifies victory, success, and hopefully the beginning of normal although I am still not entirely clear on what that means.

I can unpack the permanently packed hospital bag full of toiletries, sugar free lemonade packets and the bible I took from the hospital chapel in a moment of despair (you are allowed to take them…even in my despair I checked….) I will not be scheduling any more over night hospital visits and Emily will only go for checkups now. I always remind people she is not in remission least they think they are free to stop praying for her. The next 18 months are critical. June 2 2012 that’s the date we are waiting for to be in the clear. As for now we are celebrating her victory for being one of the miracle kids that gets to the end of treatment and increased her cure rate almost 30%! What a little warrior she is.

As I’m sitting in the waiting room while she’s under anesthesia a family I know walks by.

“Tara what are you doing here?”

“I’m waiting, Em is having an MRI. We’re doing her end of treatment scans. Why are you here?”

And then the world stops for a moment. D, their 3 year old daughter who Em & I saw almost every morning while they did radiation therapy together at University hospital, has relapsed. She was done, months ago she finished therapy. Her broviac (central implanted IV line) had been removed. She was home. Life was going on. Then she had an ear ache. Well it was just an ear ache, quick trip to the doctor. Except they couldn’t see inside her ear. Weird huh? They open behind her ear. There’s a mass. It’s testing postivie for cancer. A blood cancer. But her blood is testing clean. Everyone’s stumped. One of the leading cancer doctors in the country can’t explain it. Frustration and fear written all over their faces.

It’s a moment like this that reality bites. Cancer kid parents seem to agree. We ache more for each other’s kids then our own. Maybe it’s because mentally we don’t go there with our own kids. We don’t face the reality of the fatality of their disease. But when another kid relapses it triggers that emotional fear…that could be my kid. The pain I feel for this couple. It’s empathy to the 10 degree. You’ve been there too. You know that fear of that first diagnosis. The shock, the grief, the anger, the fight with God. Then the acceptance, the fight, the will to kick cancer butt. Then victories, infections, trips to the PICU, vomiting, mucasitis, narcotic drips, IVS, surgery, tears, clear tests, cheers, success. The inner voice edging you on…she’ll be ok…my kid is one of the winning statistic. And then when you hear there is a relapse, it stops.

Is this worth it? Putting this tiny body through a living hell to gain a year?

I cry for them. I cry for D. I cry for the kids I personally loved and their families that lost the fight. I am scare and guilty at the same time. Guilty Em is here cancer free and D is not. Why does my kid get to the be miracle kid? I’m celebrating the end of treatment and I’m sorry because they are now standing in front of the next mountain. You can just see the tiredness written all over them. Tired of fighting. It’s not a physical fight it’s an emotional fight and some days there just isn’t any left.

They have to go. I have to go. We say good bye. I pray for D. God is the only one I know to go to go. And then the fear sets in.

I came today in victory. Em is done with treatment. She won! She’s my sassy jersey fighter! And now I’m paralyzed in fear. Guilt has suddenly been surrounded. An army of “what if’s” storm into my brain. What if it’s back? What if she’s just like D, Z, A, M, and A? Children who were the bravest, most heroic cancer warriors who lost. No! I scream in my head. I mentally take control of my thoughts and fight back (once again) I will not let those thoughts take control. I feel sick. The RN comes out Em’s in the post op room (they sedate kids for MRI’s)

I go in. I’m trying not to shake less the hospital staff thinks I’ve suddenly become a junkie on my 1 hour break. She’s laying there. This tiny little body on a huge operating wheelie bed. Side bars up, a blanket over her, the blue foam head cushion under her. Her eyes closed, breathing steady. The RN says the MRI went great and confirms they put the catheter in for her next test.

I sit. I think. I try not to think. I stare at her. What if there is cancer in her? What if it has snuck back in and is secretly plotting its human take over? What if all this was for nothing? What if she is just another statistic? She looks so good. Her hair is back & she doesn’t have that long yellow spaghetti like feeding tube sticking out of her nose anymore. She looks…well normal. I remind myself for 6 months she looked normal while cancer was slowly taking over her body and killing her without me knowing. Again I argue with the fear that torments me.

My friend calls to check on Em. I say she’s sleeping. Should I tell him? Should I tell him about D & that I’m scared & that I want to throw up & run out of here screaming with my hands over my ears. I usually don’t tell people I’m scared. I don’t want to put that into the universe. But today I do. With my voice shaking I tell him about D, about talking to her family, about her relapse, about my fear.

Now I know for someone who doesn’t live in the cancer world this is a lot to take in. I barely know what to say to a family when I hear their child has relapsed and I live it. So really can I expect this poor non 7th floor living, non chemo puke cleaning, non hospital eating, sleep room showering, IV pole pushing, CBC reading human to even know what to say? I almost feel guilty for putting him the position of feeling like he has to respond. Should save him the uncomfortableness? The “sorry for your kid I don’t know what to say” moment.

“D isn’t Emily.”

That’s it.

That’s all he says.

That’s all I need.

He’s right. She’s not.

Relief literally crashes over me like a wave drowning me. I sink into the chair. I feel like I just ran a marathon.” D isn’t Emily. D isn’t Emily”. I repeat it to myself over and over.

I’m sorry for D. I’m sorry for her family. My heart aches for them. I look at Em. She isn’t D.

She is cancer free. She is my miracle kid. I won’t have the tests back for a few days and yet suddenly the fear is gone. The fight is back. My jersey kicks in. What was I thinking? FU cancer. You’re not taking my kid. She just kicked your butt Jersey style. Get used to it cancer. I might be sitting in Aurora CO…..but this is how we do things in Jersey.

1 thought on “THIS IS HOW WE DO THINGS IN JERSEY…..”

  1. Tara, I’ve said it before and I will say it again … you are an amazing woman and mother. Em is an amazing child and I will continue to send happy thoughts and prayers your direction. Your faith has been tested and your NJ spirit is prevailing. Congratulations to both of you and continue to enjoy life … one day at a time … New Jersey style!

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