Do Something. Do Anything. 4% Isn't Enough.

*updated September 2017

For all the days of my life, I'll be an advocate for childhood cancer. 

Jace looks normal now and most people will forget his journey eventually, but his 4 years of treatment have changed everything for us. 

We will never be the same. 

We will never look at life the same. 

There's not much left to say that I haven't already said, but there's so much left to do. 

4% of funding is all our kids are getting for childhood cancer. 

Meanwhile, because it's more profitable for drug companies, breast cancer gets $584 million. 

How can that NOT resonate with you? 

We can talk about how sad it is that 36 kids are diagnosed with cancer each day. 

We can cry because we feel and see the pain they and their families go through. 

We can look away  because for some it's just too much to handle. 

OR we can do something. 

Anything. 

• Give up your Starbucks for the month and give all of the money saved to one of the organizations listed below. 

• Buy a T-shirt to wear to bring awareness. 

• If you run, sign up to run as a St. Jude hero or something similar. 

• Shave your head with St. Baldrick's. 

I'm always churning ideas in my head to make an impact. 

We will offer you at least TWO ways, locally, for you to make a difference and GO GOLD in September for Super Jace and kids like him. 

Just because Jace's treatment phase is over doesn't mean we will stop teaching, leading, and showing others why 4% ISN'T ok. 

Nothing will change if all we do is sit and wish the reality was different. 

No one in power will change anything unless WE make them see why this isn't ok. 

I hope you'll join our family this month and choose to do at least one thing to create change. 

Childhood Cancer Donation List

  We cannot say enough about many of these organizations. Most of them have directly impacted our lives. (I've placed a * beside the ones we've directly benefitted from.)

We share them with you in good conscience that they are doing what they say they will do with your monetary donations. 

Visit Charity Navigator to view efficiencies & financial information for many major charities:

http://www.charitynavigator.org

National

Cure Search

http://www.curesearch.org

Triumph Over Kid Cancer

http://triumphoverkidcancer.org

The St. Baldrick’s Foundation

http://www.stbaldricks.org

Alex's Lemonade Stand

http://www.alexslemonade.org

Lighthouse Family Retreat *

https://lighthousefamilyretreat.org

Local - Texas

Team Connor

http://teamconnor.org

Heroes for Children

http://www.heroesforchildren.org

Silver Dollar At The Ranch *

http://www.silverdollarattheranch.com

Make A Wish *

http://wish.org

http://ntx.wish.org

Hope Kids *

https://www.hopekids.org

Peach's Neet Feet *

https://peachsneetfeet.com

1 Million 4 Anna

www.1million4anna.org

Off Treatment Means It's Over, Right?!

Look. We will be the first to tell you that we know many are tired and worn of hearing about Jace and cancer. We know people talk negatively about it and maybe even talk negatively about us. In the last three and half years, we've had it happen more times that we'd like to admit from people we've loved and thought were for us. 

We did not ask to be put in the middle of this disease and did not ask to have to miss out on so many "normal" everyday moments. We know that many care so much for Jace and maybe care not-so-much for the rest of us. That definitely comes with this territory as we've recently learned.

However, I'm fully confident that someone, including us, is learning some sort of lesson surrounding all of the above. Maybe the lesson is grace or compassion. Maybe the lesson is holding your tongue more and giving out love in lieu of criticism and judgement. The lesson might even be to find joy even when joy isn't anywhere in sight.  We've, personally, learned lessons in trust, discernment, and extending undeserving grace. 

Today as we embark on a new season, our family stands together moving slowly into a new normal while many around us will not understand the emotions and complications of this new life we are living. 

Tomorrow Jace will get his port removed. We are joyous that he will be able to experience life without it. We are excited that a small fever won't mean a rushed trip to the ER. But no matter how faithful we are, we are still human. We still pray everyday that he is cured, we ask for healing from his head to his toes, we cry out victory over his life and we hope with everything we have that he will spend many, many, many joyous and fun years living life to the fullest. We constantly have to put our faith over our fear now. 

Cancer/Leukemia will always be part of who we are. We will talk about it. We will be passionate about it. We will work to raise money for families affected by it and for research to cure it. It is intertwined into all of our individually unique life stories. 

For that reason, I will continue to give you a small peek into our perspective in the current moment. 

Our new challenges are different, but equally as daunting some days.  

One of the challenges is getting people to understand that just because Jace is off treatment and has his port removed that everything is as normal for us as it is at their house.  "Cured" in our case usually isn't used until several years off of therapy. 

Another challenge is helping others understand that many of the side effects of the many medicines that flowed through his body will not show up right away. Often learning difficulties or educational challenges take some time to show up, but we have friends ahead of us on this path and have confirmed classroom struggles that were not present before.  We've also had friends tell of unempathetic teachers or administrators who refuse to keep the kids who are off-treatment on their 504 plans while in the classrooms. (NOT in our district) As an educator, my heart so goes out to these kids and families who are struggling themselves to adjust to a new normal and still help those around them understand that "this isn't exactly over." 

Some effects do show up right away. The rash that he battles all over his body that could take up to a YEAR to go away is something we didn't even think about until now. His legs and muscles still ache and hurt and his bones are still weak. He still gets exhausted like before. 

I won't even bore you with the financial or emotional burdens we face everyday. We aren't unlike the majority of people in the world. 

There are days that we still cry overcome by the emotion of it all and moments that we feel like we can't breathe because this journey was hard. And because it was hard and we had to work everyday to keep lifting our face to our faith, we are now trying to relearn who we are now, what we like, what our relationships can be while not being surrounded by chemo. 

Off-treatment, monthly checkups and no port IS a great season to be in, but like anything else it, too, comes with it's challenges and lessons and as long as we get to do that along side of this sweet face, we will be good. 


xoxoxo

September - Childhood Cancer "We Don't Fight Alone"

We are excited about September because this is the month we can be EXTRA LOUD about voicing our support for kids like Jace and reminding others how important childhood cancer awareness is to all of the kids & families affected. We try to give you a glimpse into what families like us experience and all the challenges that pop up along the journey.

This year we not only have a donation list for you again, but we also will be selling t-shirts to honor both Childhood Cancer Awareness and Super Jace.

There are LOTS of ways to support children who have cancer and their families. We don't ask that you do them all, but that you AT LEAST share our story with those you meet and bring awareness for just how many kids are affected each day.

>>WEAR YOUR SUPPORT <<

We've partnered with Kathryn over at Dash of Flair and created a special Childhood Cancer tee that reminds us all that "We Don't Fight Alone" and that everyday 43 kids are diagnosed with childhood cancer.

$4 from each shirt will go to the fund of your choice: Team Connor Or The Jace Poncio Medical Fund.

Kathryn will be taking pre-orders starting now. Please click here to grab your shirt! You can also email her at ShopDashofFlair@yahoo.com for questions.

Shirt sizes 3XL and 2XL...........$25

Sizes S, M, L, XL.......................$20

Youth S, M, L..............................$20

Kids 2T, 3T, 4T, 5/6, 7..............$20

We have also teamed up again with fellow co-worker, Carol Lynn and her husband, to bring back the original blue Super Jace t-shirts. We know you've ALL been asking for them for the longest time and that time is now!!!

We've created a pre-order form for you, also. 

Just click this link and fill in your information: http://goo.gl/forms/uWPfv12u5I

Questions can be sent to onthewingsofgratitude@gmail.com

All shirts $20

* For shipping, add $5

>>SUPPORT WITH YOUR TIME<<

We also will be working with our local high school and St. Baldricks to bring more awareness to schools. Be watching our social media sites or here for more information regarding this effort. We are working hard to get information out to you as soon as we've ironed out the details.

In addition, we've been asked to be part of a few events coming up in October including the local health fair put on by the City of Celina which will include a walk.

We will also be working with Team Conner (listed below) and their Color Me Green 5K and Caterpillar Dash.

Please be watching our social media feeds, Jace's page and our personal pages for more information so you can mark your calendar!

>>DONATE YOUR SUPPORT<<

And as always we encourage you to donate ANY amount of money to the organizations listed below. The government only gives 5% of funding to childhood cancers. Our children are our future and should be taken care of better than this.

As always we thank you for your continued support, love and prayers.

~The Poncios

Childhood Cancer Donation List

**direct money only to childhood cancer related causes, primarily research

If you'd like to, specifically, help a family whose child is currently undergoing treatment, please email us for more information. onthewingsofgratitude@gmail.com   

Visit Charity Navigator to view efficiencies & financial information for many major charities:

http://www.charitynavigator.org

National

Cure Search

http://www.curesearch.org

Triumph Over Kid Cancer

http://triumphoverkidcancer.org

The St. Baldrick’s Foundation

http://www.stbaldricks.org

Alex's Lemonade Stand

http://www.alexslemonade.org

Local - Texas

Team Connor

http://teamconnor.org

Heroes for Children

http://www.heroesforchildren.org

Sarcoma specific:

Liddy Shriver Sarcoma Initiative

http://sarcomahelp.org

1 Million 4 Anna

www.1million4anna.org

OTHER

Make A Wish

http://wish.org

http://ntx.wish.org

Hope Kids

https://www.hopekids.org

Kenna's Kids

http://www.kennaskids.org

Peach's Neet Feet

https://peachsneetfeet.com

Lighthouse Family Retreat

https://lighthousefamilyretreat.org

Childhood Cancer - Now That You Know, DONATE!

September is Childhood Cancer Awareness Action Month! 

Most of you are aware now how often children are diagnosed and thrown into this community without warning. If you've been reading this blog or this caring bridge for any amount of time, especially at the beginning of our journey, then you know we've been very candid about our struggles and our victories with Jace and leukemia. 

I think I'm speaking for most of the families I know affected by childhood cancer when I say we celebrate when anyone wears a Super Jace T-shirt, remembers yellow Wednesdays or donates to our new passion Operation Love in hopes of making it a non-profit for families of childhood cancer  (We always need donations!). We are thrilled because doing these things means YOU are being AWARE and thinking outside of what's going on in your own life. 

Now we are being candid about taking action. 

The only way that we will make a difference is if we band together and DONATE to places that are making a difference in research and in lives. 

Fellow cancer mom, Candi (www.caringbridge.org/visit/karly) and I put together a list of specific places that we know, firsthand, are focusing, specifically, on childhood cancer. You may see some of your favorite charities not listed. We wanted to give you a list of organizations that we as cancer parents trust and know are giving most of their donations to childhood cancer research. (more info http://www.stbaldricks.org/filling-the-funding-gap/)

Some of the links below are organizations that either help families financially or help give the kids and the families some great memories during treatment that we've worked with, personally. 


The following list should be helpful to you as you make your choice for donations this month. 

Childhood Cancer Donation List

**direct money only to childhood cancer related causes, primarily research

If you'd like to, specifically, help a family whose child is currently undergoing treatment, please email us for more information. onthewingsofgratitude@gmail.com   

Visit Charity Navigator to view efficiencies & financial information for many major charities:

http://www.charitynavigator.org

National

Cure Search

http://www.curesearch.org

Triumph Over Kid Cancer

http://triumphoverkidcancer.org

The St. Baldrick’s Foundation

http://www.stbaldricks.org

Alex's Lemonade Stand

http://www.alexslemonade.org

Local - Texas

Team Connor

http://teamconnor.org

Heroes for Children

http://www.heroesforchildren.org

Sarcoma specific:

Liddy Shriver Sarcoma Initiative

http://sarcomahelp.org

1 Million 4 Anna

www.1million4anna.org

OTHER

Make A Wish

http://wish.org

http://ntx.wish.org

Hope Kids

https://www.hopekids.org

Kenna's Kids

http://www.kennaskids.org

Peach's Neet Feet

https://peachsneetfeet.com

Lighthouse Family Retreat

https://lighthousefamilyretreat.org

Worry --Joy

5:00 AM - I woke up overwhelmed with worry. I couldn't go back to sleep. 
5:30 AM - After 30 minutes of talking to God and repeating scripture in my head, I snuggled up to Jason and just cried, then we prayed together. 
6:00 AM- I decided to just simply ask for prayer on FB and twitter. 

Wednesdays are always big days for us. It use to be every Wednesday. Now it's just a few Wednesdays a month. They DO become routine in our minds, but actually going through them is a different story. I mentally start preparing the day before which makes it hard to concentrate on anything else.

There's nothing routine about your child having to have chemo, a lumbar puncture, or stay in a clinic for most of the day. 

I DO worry about a multitude of things, but usually only for a millisecond until I redirect my thought process. 

This morning was different. I knew last night that anxieties were high around our house. They always are when Jace goes in for a big day, even in maintenance. My instinct was to let Avery miss school and go with us. I had no idea why. 

This morning was different. I don't wake up often with such heavy worry surrounding me, but it was engulfing me so that I woke up because of it. 

SO I stopped and sent out this specific prayer request:

Specific prayer for Jason & I today: for the worries we have (finances, girls, jobs, this day with Jace) to be overtaken by complete faith and trust. This struggle is real and I have no doubt we are being molded for something else, but YOUR prayers and HIS grace sustain us and hold us up. #gratitude

By 6:30, I began feeling better and feeling like I could get up and tackle whatever was in store. We did let Avery miss school and go with us. She has a spirit that calms Jace and makes him do things with more ease - like putting on numbing cream on the places that will be "poked" or going back to the "sleepy room." She is such a warrior herself because the things we did today, however "routine," are still difficult to just watch from the sidelines. She learned what a lumbar puncture is and why we do them and how cancer cells like to "hide" out around the spinal cord. 

That alone could keep me in a place of worry.

BUT

Just like He always has, God took our worries and transformed them into JOY. 

A great friend dropped off lunch for us after her bible study. 

We got to see our Children's Legacy family - ALL of them: nurses, drs, families, patients!

We laughed A LOT today. 

We had some divine appointments that we know God had all planned out. 

We had Operation Love bags delivered to Dallas today! 

We were contacted by some amazing people for some small, yet amazing opportunities. 

Those opportunities are just reminders to us that God has a MUCH bigger plan for us than we have for ourselves. 

MANY, MANY of you are praying for us and lifting our family up. 

We decided to try to start a BIG movement called #yellowWednesdays for #childhoodcancerawareness. (we hope you will join us to support all the families affected!)

Pete Delkus and John McCaa  (WFAA8) RT our tweet about #yellowWednesdays! 

We had a carpet picnic dinner and watched The Middle (our favorite family show). 

Pete Delkus briefly talked about Jace and our family during the 5 pm news on WFAA. (we missed it) 

We heard that the last line of that broadcast was "NOTHING IS IMPOSSIBLE!" 

This morning I woke up with overwhelming worry. 

Tonight, I sign off and go to bed with overwhelming joy.

Friends supporting Super Jace!
(including Jody Dean, Pete Delkus, John McCaa)

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The Arena

15 months have gone by. 15 months. 

It all seems surreal. I've blogged about it on Caring Bridge and Jace's Facebook page for almost that long. I always hope to be able to give people a small honest glimpse into our lives now. 

One day I'll go back and read and compile it all. One day . . . 

My updates are fewer and farther between these days. It seems that I have less and less to say. 

Actually, I have a lot (A LOT) going on in my head almost 24 hours a day, but I'm finding more and more that I'm not willing to share that with many. 

Jace is doing well on his treatment. And that IS a victory. We ARE so thankful. 

However, because he "seems fine" to everyone else, it's easy for them to think that we have no worries or stresses and life should be "business as usual" now. 

Any cancer family will tell you, "Doctors have NEVER said there is a 100% cure rate."  (leukemia is 85%)  Let that sink in for a bit. Jace is doing well, but we are still on this journey and at any moment we know life could change again. As a parent who has watched their child go through things even adults haven't experienced, that 15% is always just over our shoulder. Borrow trouble from tomorrow you say? Well, keep reading, I cover comments like that below. 

It's very difficult to explain. I'm only speaking for our family, so I am not sure if it's just us or if others feel the same way. 

The longer we are on this journey the further away everyone else seems. 

I've watched people walk in these shoes prior and noticed that same "withdrawl" for lack of a better word. I always wondered about it and wished that I could just make it all better for them. Now, I know, it's not that simple. 

Jason and I have our small circle of friends who we confide in and who are credited with keeping us "afloat" in the ocean we are in at the moment. But to be honest, those I trusted before and confided in have proven not to be as trustworthy or "on our side" as we first thought. And then that creates lack of trust with almost everyone. 

As things around us change, (jobs, relationships, circumstances) we continue to struggle with what my friend and fellow cancer mom, Candi, calls the "behind the scenes." 

It's all of the things other people just can't know. 

At first I thought I'd try to write it all out, but I found that the photo I created says it best. There are many, many, many things deep below the surface of what everyone else knows or sees of us. These are things you most likely won't hear us talking about, but every.single.day all of us are struggling through at least one of them and usually more than one at a time.  

^ ^ ^ See that bottom part? That's the valley we are in now. That's the place I'm writing you from. That's the place that most families are truly living. 

One of the biggest things I, personally, struggle with is learning to disregard feedback from others. I know many of my fellow warrior moms and many of the warrior women who have struggled the cancer journey will understand this. We know those that say things, typically, mean well, but their comments are not usually helpful. 

 Many "spectators" seem to have judgements and opinions swirling around all the time: 

(these are not all my experiences, but some I've heard along the way)

*They had another baby?!
*If they can't completely do their job and take care of their treatment, then they don't need to be working.
*Why do they have to pick up their child if someone in the class has fever? What's the big deal? They were already exposed! 
*How dare they spend money on anything else except insurance or medical bills!
*Why is she not the friend she was before? 
*They are fine. Leukemia has an 85% cure rate. I know tons of people who had leukemia and are now adults.
*Well, at least you get to quit your job and be a stay at home mom now. I'm so jealous. 
*Isn't his treatment over yet? How much longer?!

Here's the bottom line and author Brene Brown has no idea of the power of this statement but for me this is my response to all of THOSE comments: 

If you've never watched your child battle cancer....
If you've never been in THIS arena....

If you're not getting your ass kicked by this journey, your feedback is not needed. 

Our family, childhood cancer families, all cancer families - they need love, understanding, patience, support, and prayers in a feedback free zone. 

No Make Up Selfie Misses the Mark

Disclaimer: This is my opinion and only that. I've always, always, always been of the thought to DO something (I'm a do-er) in order to help. 

The No-Makeup Selfies for Cancer Awareness on social media: 

WHO is it HELPING? 

You know I'm about awareness, but with the follow up that TOGETHER we will DO SOMETHING. 

I read this article today and thought it was pretty eye opening. 

And here's one from TIME that you should read to see how it all got started. 

I really didn't think much of it until they started appearing more often. 

I think many times we miss the mark when it comes to awareness. Unfortunately, social media oftentimes HELPS us miss the mark, don't you think?

Based on several of my talks with audiences of all ages, pretty much every single person has been affected by cancer and is aware of its devastation already. Many of us who are living in the awareness everyday are also trying to do something to help those just like us. 

If you aren't sure WHAT to do, ASK us. There are a lot of ways to help create a wave of awareness. If you're not sure if your money or donations are actually HELPING cancer patients, ASK. Most of us are in the know of the BEST ways to help and which organizations are going to truly to use the money/donations for those affected. 

In 26 days, we will walk/run with Super Jace and try to raise money to give back to the Center for Cancer and Blood Disorders, our home away from home aka "the clinic." Our goal was $2,000. We have $50. We are attending the event whole-heartedly no matter how much we raise because when given the opportunity we will ALWAYS be all in to help the cancer community. 

Is this about money? No. Is this about awareness? Yes. Is this about actually helping REAL people in a REAL struggle? Yes. Do I know that even your $1 donation will go DIRECTLY to the place that has helped us for the last 15 months? Yes. Should you pick and choose the right way to help that works for you? Yes. 

Do I think posting selfies is the same level of brave as those I know who have fought? 
Not. At. All. 

#wedontfightalone


Team Super Jace - Red Balloon Run & Ride, April 26, 2014

always in love and gratitude,