Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts

Friday, May 30, 2014

PTS and Childhood Cancer

**Note: I wanted to add that because these 2 things aren't researched or TALKED About much, even to us, the stages of trauma with any chronic illness is probably different along the way. I'm only writing from our perspective now.

First off, I just want to say that if you've never gone through cancer treatment (or another chronic illness) with your child AND have never had a true anxiety attack, you just can't know how they both impact daily life. 

I've been through traumatic stuff in my life before and I've struggled with a little anxiety off and on. 

I've learned how to cope with it and found what works best for me: 

*working out
*praying
*reading
*surrounding myself with positive, uplifting people
*scheduling time alone
*careful planning of my day
*not a lot of noise and crowds

When we first started on this journey I began doing my own research about links between Post Traumatic Stress and Childhood Cancer. There's not a lot out there, but everything I found revealed that it is real. 

I've blogged before (here and here) about anxiety and how we are seeing it present itself more and more in our lives so many days after the initial panic-cancer-is-here-why-did-this-happen phase. 

However, nothing

NOTHING


NOTHING

prepared me for what I experienced earlier this week. 

I've noted before that after long periods away from the clinic we've seen anxieties in both Jace and the girls. We've also felt them ourselves. 

We knew that Wednesday was going to be long and we'd have to get into our "zone" to get through it. 

About a day before treatment, there is always a mist of anxiety blanketed over all of us. 

The thing is everyone (almost everyone) thinks all is pretty much back to normal or at least routine now that we only go in once a month. 

Maddie has said her friends struggle with understanding why it's all still even a deal at all. 

Avery usually wears her heart on her sleeve so anyone around her knows this topic makes her sensitivity heightened. 

Jace seems to cry more easily about small things. He is more clingy. His appetite is almost zero ( some par for the course). 

Jason and I usually cope in our own ways. Extra workouts, extra prayers.....

Yesterday started off normal enough. Nothing big happened. Looking back and reflecting, I know I didn't make enough time to read my daily devotional, didn't play Air1 while getting ready, didn't arm myself like I typically do. These are small intentional things I do, and now I know they really DO help! 

I got to my meeting and tried to balance myself. (note: Didn't stop at my office to breathe, check email, or acclimate myself like normal.) 

I started reading email and realized sweet Avery was getting an award and because it was Wednesday we wouldn't be able to see that. 

This Wednesday meant a lumbar puncture, ivig infusion, benadryl, tylenol, and a pentam breathing treatment. 

That triggered how much I hate cancer and chemo and how many moments it has tried to steal in 485 days. 

Then, the words "Maybe one of you can go with Jace and the other can stay here with Avery." (no. just no. both of us like being there when we can because we know it will be a long day and the toll on us will be less if we are together)

All of that happened in a 2 minute time span as my heart was racing, I couldn't breathe, I started sweating, and feeling like I was going to pass out. 

I needed to run! 

I gathered my things and barely made it back to my office before I just lost it. 

There was no warning. No insight that there would even be a trigger.

You can't plan that. I can pray and pray for those attacks to be alleviated or completely gone, but in that moment all I could do was breathe and escape. 

Everyone is full of advice about anxiety, but it's not as easy as being grateful, relaxing,  breathing or praying. You KNOW I'm already doing all of that. Anyone who has experienced a true attack, then you know if it were that easy you'd not be having them. 

Here's the article I posted (thanks, Candi!) on the last blog about PTS and #childhoodcancer: (http://bit.ly/1nS6JGy)

Be aware that those you know fighting an already difficult battle are also dealing with this. Are they dealing with ALL of that? Probably not. But PTS is REAL. 

*Note: This video is only to show the daily struggles of simple things we took for granted before. Taking off his band aids can sometimes take at least 30 minutes because he doesn't want us to touch them and he doesn't like the sound they make coming off. 




We've noticed changes in Jace's fears and his need for a sense of constant security and consistency. Any small change triggers immediate fear and anxiety for him and I've learned how to read his cues. 


For me, here are some things that have changed: 

I find that I want to avoid crowds more than before. 
I find more comfort in one-on-one situations instead. 
I would rather stay home than go out. 
Trusting people is harder than before. 

^^^^
All of that is not gonna help me grow and I KNOW this. I'm growing through it and super in-tune with what helps. 

After sharing about my anxiety attack on FB, my sweet friend, 

Sherry said "It's refreshing to know you're human." 

I am HUMAN. You just don't know how human I am. 

*Pull up a chair and pour some coffee*

I'll keep sharing my journey with all of it's struggles, victories, laughter and tears because I know someone else out there needs to hear they are not alone and it's ok to be vulnerable. 

I'll keep doing the thing I know works for me: praying and writing. 

I should be doing all of that anyway. :) 

Monday, May 5, 2014

Yellow Wednesdays, Operation Love, Pudge Rodriguez & FI8HT

A little bit of everything today: 

Find a Yellow shirt to wear for #yellowWednesdays and #childhoodcancerawareness! Help us and join us in bringing as much as awareness for children as #pink for #breastcancerawareness! Be ready to use the hashtags so we can see your photos of YELLOW! 

Operation Love has a new drive going! May 5-9 drop off your small items at Celina HS! Many students are helping with this drive so we can take more care bags to caregivers at Children's Hospital and Cook's Children's! For more info visit our page: Operation Love 



Jace and Pudge Rodriguez
Jace had a busy day yesterday! He was able to go to the Frisco Roughrider's game and hang out with Pudge Rodriguez! Pudge and the RR were awesome! A big thanks to Sherry Hale for getting us out there and to Pudge, the RR's and Dawn Nuefeld for being amazing during Jace's time as honorary hero for Silver Dollar at the Ranch. The event is May 17th! Please visit their website to purchase tickets and join us for a night of fun and giving! 

Jace, Pudge, Rough Riders, Dawn
Jace, Tisha, Dawn


Lastly, Jace is the weekly warrior of FI8HT, an amazing company bringing awareness to those around them! We happened to find Fi8HT on Etsy and ordered Jace a "Little Fighter" shirt. He loved it so much and it reflected how we felt about his journey. Now they are featuring a weekly warrior and that warrior gets to pick a charity of their choice! For every order that comes in this week, $7 will go to our favorite organization, Peach's Neet Feet. Please visit their website and order for those little fighters you know (cancer, autism, diabetes): www.fi8ht.com


Big love and thanks for ALL of your support out there! Together we will find a cure and create awareness so that no one can look away!