Running on fumes……

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You see that smile?  Well that’s a smile on less than 4 hours of sleep.  A 5 minute shower because I was so tired when I set my alarm on my phone I failed to see it was for 4:30pm instead of am and got up a half hour late for my live interview on our local top rated morning show!  I managed to give Adler his Zofran on time and Tylenol all night long after one of the roughest post chemo’s to date.  Sure in the beginning during the induction phase where it’s 10 weeks straight with no breaks and his body was being poisoned and hurting and he lost ALL of that steroid weight and ALL of his hair and it took 13 because of low counts a few times and even a hospital admission for a couple nights that included a blood transfusion and also an ER trip in there I am sure, he never looked like he did last night.

He puked twice. Like a champ too.  He used to cry when he’d puke because it hurt his butt so much.  Now, he holds the bucket himself and even pauses and says “one more” before he vomits again.  Daddy rinses the bucket while I hold his hands on the toilet because chemo also causes diarrhea so he’s on the toilet at the same time.  He loses all color in his face.  Begins to sweat and has goose bumps and says ” I know we don’t say this but, I feel like shit”  and I said “oh honey, I bet you do”.  He’s got his eye’s closed and is swaying a bit and I call for Aaron because I know he’s going to pass out.  I hold him and he holds his back.  He’s out for a minute then opens his eyes after I say his name a few times and he says “mommy, I just can’t take it any more, I just can’t”  And my eyes well with tears.  Full tears stream down my face as I look at my half dressed son on the toilet, I am holding that goddamn Spider Man puke bucket and he’s pale and clammy and green looking.  I move closer to him and touch him.  Stroke his head and cheeks.  Pull him close to me and say “only 2 more times buddy, 2 more times and then we can take a break baby, you get a break from this”.  He smiles and says “good” .  I wipe his bottom as he cannot reach behind himself and get him all dressed again.  Walk him back to the couch and turn on the heating pad because his butt hurts and he want his doggie and iPad.

Our dinner was ready 20 minutes ago and Aaron plates it.  I hate leaving him to eat so I hurry and shovel the food in my mouth.  Barely chewing it and not even sure I taste it.  Just swallow it down as the tears fall onto the table.  We talk about it.  We talk about the evil that lives in our son.  The black cancer that we hate.  The poison that is chemo that works to kill the cancer and harms our son.  We talk about our fears and hopes all wrapped into one sobbed over dinner napkin used as a Kleenex.  I go from sad to angry to sad again in a matter of minutes.  I left the anger a long time ago.  Back when I couldn’t pray and back when I couldn’t do much but day dream it all away even when I was catching the puke in my hands.  It’s our reality.  OURS.  OURS to live with.  OURS to deal with.  OURS to remain in with him, our son who suffers with 3 goddamn diseases.  We talk about the why’s and the how’s and all the  bullshit we can’t stand about cancer.  We laugh a little too cause you have to or you would lose your shit completely.

We finish eating and I go back to Adler’s side and cuddle him a little.  He feels and looks better, but my head hurts.  I am all stressed and upset.  My heart aching from what I just witnessed and for all those that I know have seen what I just saw.  We are not alone.  September is Childhood Cancer Awareness Month and it’s Hydrocephalus Awareness Month too……and its not rare.  It is the #1 killer of children today.  More than all other diseases combined.  46 children will be diagnosed in a day and 7 will die a day.  That is seriously fucked up.  And there is only 4% of all cancer research funding put towards childhood cancer.  Our children our dying from this.  Mine may be one of them. Oh I know, remain hopeful and all that but come on, it could happen.  We hope it won’t.  And yea he is stable right now…….but next time??  Or the next round of chemo??  Or what about secondary cancers or all the harmful effects from chemo and from his other diseases?  He’s been on steroids for almost 2 years…..that can cause all kinds of health issues.  I mean its our life.  Its our world, our reality and its palpable.  We feel it.  We see it.  We hear it. We smell it.  BUT we will not let it define us but it has debilitated us and weakened us and also made us stronger and powerful all at the same time.  We are The Carris’s.  They have a son with cancer.  Yep, we do.

So yea, I got up and got myself together this morning on a few hours of sleep.  Put on my red lipstick and smiled in the mirror before I went on set and was proud.  Proud of my son and his strength that I draw from.  I have said he is the light in my dark.  He is the rainbow in the storm.  I smiled and told what little bit I could about Adler and his up coming benefit to raise money because our son’s battle is a life long one.  And the love and support from our community is necessary for survival.  Real tactile people or virtual ones who I am honored to have as my friends from across the globe.  From other states to other countries.

I spoke from my heart with passion.  That is one thing cancer hasn’t taken from this family.  Passion is alive and well here.  It lives in harmony with the killer that resides in our son.  The stare at each other sitting in that bar with PAIN and death at the door checking ID’s, but LOVE is BOLD and so is our PASSION.  So today, I told our little world about Adler.  I could have talked for hours about him.  And you know what, it felt good.  Really good.

So, when I crave something, or have a need or a void I can rely on that smile with those red lips to keep me going and remember that passion and love live in the same world and the same house as we do.   Sometimes it may be sugar coated and candy covered with a fake smile, but it’s still a smile none the less.  But today it was real.  There may be tears and sadness and anger and all those other emotions too but I awoke with drive and desire and willpower to keep going.  How do you do it is a question I get asked all the time and my answer is “because I have to”  Keep going, keep living, and spread the word.  Adler is an inspiration and that’s why…..that’s why.  Shine Bright this September and Go Gold for him and for all those kids fighting cancer.  Remember your passion and let it shine bright as I let mine.  Shined all over that set at 6:23am this morning even running on fumes!!!  Did I mention I can’t drink caffeine either…….Happy Day!!

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