NoogieFest

Noogie Fest

Written by Kristen

This past Saturday we took ViviAnne to Gilda’s Club Fall Festival, Noogie Fest. There were tons of activities and an animal show for the kids. It was a wonderful opportunity for ViviAnne to play with other Cancer warriors and survivors and for us parents to get to talk with one another about fears, questions, hear positive stories and just have a great cancer family day!

ViviAnne had a blast! She wanted so badly to jump in the big blow up bouncers outside, and did muster the courage when there were not big kids in there and Daddy would sit in the contraption and hold her hands for her to bounce. She would giggle and squeal. (both with fear and delight) She enjoyed the mask making and made some green slime and even had her caricature made! There was also a safari animal show with snakes and frogs and birds. She sat there next to one of the sweetest girls ever, one of Deborah’s triplets, and watched as this crazy man pulled one animal after another from bags. Every time he would ask for a volunteer little hands would shoot up around the room and there our little ViviAnne sat, wanting to be brave and a big kid and you would see her look around at all the kids with their hands waving excitedly in the air and her little arm would creep up only to hold her hand right next to her head. As to say, “yeah I’m big and not scared” but really she was and I am so glad that man didn’t get any quirky ideas and call on her because the outcome would have been bad. Thankfully he didn’t and ViviAnne sat there and watched all the other “brave” volunteers touch the snakes and birds and even a skunk! It was really a great thing for her to get to do.

I find myself constantly fighting the battle between treating her “normal” and treating her like she is sick. It is so hard to tell sometimes what is real and actual stomach or knee complaints and what is repeating previous experiences. She relives her traumas a lot!! So this weekend to see her get to play and do normal kid things was great. I was aloud to not have that battle within myself and let her be “normal” all the while talking about how hard this is with the other parents. I just hope over the course of the next two years that I never let her see in my eyes that she isn’t normal, because she is only with a little extra crappy stuff. I never want her to see my fear of all of this, not until I have a better handle on it myself because right now it is an uncontrolled fear one that could scare a grown up if I unleashed it so it would frighten the heeby jeebiez out of her!

We met other parents whose children are either out of treatment and/ or in the same place of treatment as us. We exchanged numbers and emails in hopes of being able to meet up again and vent and/or cry about this horror we now live. Parents who get it! Mom’s and Dad’s who like any Mom and Dad are trying to do the best they can for their child only we all feel as though the hand we’ve been dealt now has higher stakes than before, higher stakes with worse odds. So I find myself almost being clingy to these Moms when I get the chance to see one, just so I know I’m not crazy or over reacting. Which I’m finding out I’m not but a little reassurance is always nice!

ViviAnne is continuing along nicely in treatment. Her counts have maintained pretty well. Her platelets are a tad high but not too high to do anything about. She still carries around a kidney stone but nothing too bad, and she has a random vomit here and there but nothing to get worked up over. At least that is how I feel as though I have to look at it. She truly is amazing how she takes it all in stride and just moves on. We’ve heard a lot of stories of how awesome Cancer kids turn out to be as adults. The compassion and empathy they have for people is amazing! These are traits we were trying to instill in our children pre-cancer SO hopefully I too will have a story like that for ViviAnne. Hopefully I will get to be one of the veteran Mom’s whose cancer survivor becomes a doctor or nurse or social worker or minister. Someone who gives back to this world!! These are the things I try and tell myself so that I do not dwell on her prognosis and the “what ifs” and the horror of all that could go wrong and/or IS going wrong. We try to stay positive. Some days we are more successful than others. And then there are some days when it is minute by minute. So if you talk to me and I’m up then I’m up. And if you call and I don’t call back, well it is because I’m down and I can’t muster the words or the energy. So everyone out there who gets annoyed with my voice mail, please know I am thankful for your calls I just can’t seem to get the energy to talk sometimes. It isn’t personal; it is just where I am right now.