How a 10-Year Old is changing Childhood Cancer….

Sadie is an amazing young cancer survivor. She’s been a HUGE inspiration to me in the fight for awareness and research! Sadie is currently heading to Washington D.C. again for CureFest for Childhood Cancer 2018!

In honor of Sadie, and CureFest this weekend…I wanted to share the piece I wrote about Sadie back in June.

The world of Childhood Cancer is one that you aren’t familiar with, until you have to be. It’s a world where more than 40,000 children undergo cancer treatment each year. In this world the average age at diagnosis is 6 years old and 1 in 5 of those kids will die. It’s the leading cause of death by disease in children under the age of 15 in the U.S. No one wants to be apart of that world.

Childhood cancer is not one disease – there are 16 major types of pediatric cancers and over 100 sub-types. The causes of most childhood cancers are unknown. Childhood cancer research is vastly and consistently underfunded, receiving only 4% of the national oncology budget.

How do you fight such a world?

Today, one Texas girl is helping drive that fight.

Sadie Keller was 7 years old when she was diagnosed with Leukemia in 2015. She immediately began to notice how much kids in the hospital were suffering from this awful disease. Sadie and her family began researching and learning everything they could about childhood cancer and its funding. She decided she wanted to start a nonprofit organization to bring cancer kids joy and to advocate for a research and funding. The Sadie Keller Foundation was born and even in the midst of fighting her own cancer, Sadie began collecting toys for ‘Sadie’s Sleigh’ and Milestone Gifts to give to fellow cancer patients and survivors. Sadie told Fox News that ‘Seeing other kids with cancer happy for once instead of being worried for their health,” was what motivated her to collect more than 18,000 toys for kids in the DFW Texas area since 2015.

Sadie’s second mission was to advocate for a change nationally in how Childhood Cancer is researched and funded. She was able to get in contact with Representative Michael McCaul of Texas, Co-chair of the Childhood Cancer Caucus and they, along with a team of other officials began lobbying for the Childhood Cancer STAR Act in 2015 addressing Survivorship, Treatment, Access, and Research.

This act will specifically expand opportunities for Childhood Cancer research in the National Cancer Institute. It will also improve the way cases of Childhood Cancer are monitored and studied nationwide with funding to identify cases and collect them into a national childhood cancer registry. Thirdly, the act will improve the lives of the nearly 500,000 childhood cancer survivors across the nation. 80% of childhood cancer survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation would enhance research on the late effects of childhood cancers, improve collaboration among providers so that doctors are better able to care for this population as they age. Finally,The Childhood Cancer STAR Act would require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.

This bill is the most comprehensive Childhood Cancer bill to ever be seen by Congress. Sadie, was able to go to Washington D.C and tell her story to our nation’s legislators. In March 2018 the STAR Act Passed the Senate, in May, it passed the House, and today after 3 years of lobbying, the STAR Act will be signed by the President and become law.

Sadie, now 10 and cancer free is in Washington D.C. again today but, this time, she’ll be in the Oval Office standing next to the President of the United States as he signs the bill she helped champion.

The world of Childhood Cancer is scary but, because of people like Sadie and Rep McCaul, that world just got a little bit brighter.

Originally Published on Her View From Home

Sep 07

For Newly Diagnosed Cancer Moms

I’ve been asked a lot over the last 16 months for advice on what is helpful when someone’s child has been diagnosed with cancer. I’ve some up with a list of things that were helpful and just good to know for us in the beginning. These may not work for everyone but, I do know that just knowing something…ANYTHING in the beginning is helpful.
1. Books-honestly I didn’t have the time or brain energy to sit and read a book…This is odd for me because I am a total bookworm but, my brain just couldn’t. I did do a little 5 minute devotional book my friend got me but any reading I did was kind of mindless reading like the Hunger Games or a fiction mystery. I think a short daily devotional like Gracelaced would be perfect. People brought us a ton of magazines and I never opened any of them. I did do the adult coloring books a lot. Stuff that doesn’t require a lot of brain power was good for me.

2. Amazon gift cards are good. Parents can get anything she needs delivered to the hospital or at home without having to go out in public. Cafeteria or gift shop gift cards are amazing. There’s also a Kroger, CVS, and Starbucks right up the road from Children’s in Dallas so those gift cards are great….if it’s a different hospital…find out what’s close and go from there.

3. Again, Children’s specific but…get a $20 weekly parking card. WAY cheaper than paying daily and you can share the card with visitors and family.

4. Emergent C is your new best friend.

5. For chemo diaper and skin rash, Phytoplex Z Guard diaper cream-it has an orange lid on Amazon…also Aquafor for mouth sores and dry/chapped skin.

6. Get a Vogmask online. They’re cloth and have a vent in them so their faces don’t sweat. You can clean them easily and they come in a small size with a strap to keep it on. We ordered two so we could always have a clean one.
7. Stuffed animals are a no no because SO many hand touch them. So tell anyone wanting to visit or send things that blankets and stuffed animals just aren’t a good idea. Thanks but no thanks.

8. Get an extension cord because the outlets are in weird spots and get Glade plug ins for the hospital room to make it smell less like a hospital

9. The air on the oncology floor is double Hepa-filtered so Chapstick and lotion are your friend.

10. Pjs that either button up or zip up the front are great for chest port access.

11. Ask for a social worker ASAP and get set up with financial aid, any and all grants/scholarships/ aid you can apply for, and if needed he social worker can set up a room at Ronald McDonald House.

12. Get notebook to write everything down in. A binder is good too (BE BRAVE BINDER SHOUTOUT). I asked for an info sheet on every drug she got and I got a copy of her blood work numbers everyday. I also wrote important stuff on a calendar so I knew when she got her last dose of each chemo, X-rays, etc

13. If/when you go home-pack an ER bag and just keep it in the car with anything you need for a night in the ER/an unexpected admittance from the ER.

14. If/when the child starts to get restless legs, pain, or can’t sleep-ask for massage therapy!!

15. Quarters are good too because there’s vending machines and the detergent in the laundry room is 25 cents.

16. Accept help. And to think of practical things people can do to help-mow the yard, feed the dog, clean the house, bring dinner, give gift cards, etc.
I’m sure there’s a ton more but, these things were invaluable for me to know in the beginning.

Sep 04

8 Months…What’s next?

Another month has come and gone. Just like the 7 before it. More days without her sweet face to kiss. More nights without hearing her giraffe rattling around on the baby monitor. More times I look up thinking I’ll see those big brown eyes but, they aren’t there.

This morning Jonathan said “It’s so hard to believe it’s been 8 months…yet I feel like I haven’t seen her in 8 years.” And he’s so right.

There are days when I truly wake up and have to remind myself she’s gone. But honestly, those days are getting farther apart. She isn’t fading but, our old life is. We are now once again used to the life of non-parents. We get up and go about our days without any of the “parenting stuff”. It sucks. I hate that that now feels normal. We babysat my friend’s precious 15 month old overnight Sunday and…it was hard. It almost felt awkward because I’m out of the mom habit. But…it’s our life right now.

Today, I started a new bible study and was asked in the get to know you activity “What’s the hardest part about life right now?” and my answer was…everything. Everything is hard. Every single aspect of my life is so hard. Sleeping is hard. Being motivated is hard. Getting work done is hard. Marriage is hard. Family is hard. Friendships are hard. Being around people is hard. Being alone is hard. Writing is hard. Praying is hard. Life is…..just hard.

But it’s also good.

While I’d trade everything about my current life for Sophie to be here, healthy and whole…I can’t do that. This is the life I’ve been given and while it’s painfully hard, there is still good. There’s redemption in the fact that even in the hard, the Lord has opened so many doors and opportunities for us through Sophie’s story. Friendships have formed for us that I don’t think would have ever happened without cancer. Relationships have changed and deepened. Our marriage has grown, changed, torn a little, and been stitched back up by the Lord and His incredible grace over and over again.

The Lord has been just so good to us even in our suffering. I’ve written countless times about the way our community has poured into us and the way we’ve been loved on. He has deepened my desire to know Him and have a true relationship with Him daily. It’s been life changing in good ways too…which is hard to accept that good can come out of your 2 year old’s cancer and death.

For a long time, thinking about “What’s next” wasn’t really an option. Again, 8 months isn’t a long time but, at the same time…sitting around doing nothing isn’t a healthy way to spend the next 50 plus years of our lives.

So many amazing things are happening right now and it’s bittersweet that she isn’t here for them and…without her cancer, they wouldn’t be happening.

Most everyone knows, or has at least figured out that I am not returning to teaching this year. My heart is not in it and I frankly don’t have the energy. I’m not sure if I’m done for now or done forever but, we’ll see what the next few years hold for me.

I have been enjoying the freedom that comes with running your own schedule. I am freelance writing and creating social media content for a marketing firm, helping a friend on his law firm’s blog, running my personal blog and Sophie’s Facebook page, continuing to submit content to Her View From Home, and I have a few speaking events coming up! All really exciting stuff!

Last week, I had the pleasure of speaking at our local Childhood Cancer Awareness kick off party…it was again, hard…but I’ll take any opportunity to talk about my baby.

I have a second speaking event coming up next week for the hospital which I am EXTREMELY excited and nervous about. I am speaking at Children’s annual employee recognition banquet to basically most of the hospital staff! I will be sharing Sophie’s story and reading my Letter to Nurses…oh and then sitting with the CEO of Children’s Health!…No big deal right? They’re even sending hair and makeup TO MY ROOM!!! So yeah, excited about telling a room full of medical personnel about the impact their jobs have on families and how God is Bigger than suffering…it’s a big deal.

Finally, on October 4th I’ll be speaking at a Celebrating Women event that my sweet friend Ashley asked me to be apart of. I’m super excited about that!

Jonathan, also has some great doors opening to him. He’s getting more involved on the deacon board and in teaching freshmen boys bible study at church. He’s also decided to pursue fitness full time. Going back to anything ‘normal’ has felt wrong to both of us and he has always had this desire to help people. Fitness is his third love behind Jesus and me…at least I hope I come before fitness haha! He has decided to start his own online fitness coaching business and I’m really excited to see him be able to do what he loves while helping others achieve health and wellness.

There will never be a time when life isn’t hard. She will always be missing. There will always be a Sophie shaped hole in our lives. But I’m so thankful for videos and pictures and her special things to remind us on the days that she seems to be fading that she’s real. She happened. She changed our lives and made us parents. She was brave and perfect. And we will see her again.

One Day Closer.

Aug 31

What September means now

September is Childhood Cancer Awareness month. Did you know that? 2 years ago…I didn’t. In honor of all of the kiddos affected by this terrible disease, Sophie The Brave is going Gold. I’ll be posting daily on the Facebook page in an effort to gain as much awareness as possible!

To start, last night I spoke at Go Gold 2018 our local Childhood Cancer Awareness month kick off.

Here is my speech:

First of all, I’d like to say thank you to Gold Network for constantly pouring into this community of cancer families. Thank you Heather & Josh for listening to the Lord’s calling on your lives to make a difference even when you were in the midst of Sawyer’s fight. I love you both so much.

September, used to be just another month for me. Labor Day meant a day off after the first two weeks of school. My sister and my dad’s birthdays are in September. It meant college football season and hopefully cooler temperatures.

Then, my world got really big, really fast and I found out what September really is.

My daughter, Sophie turned 2 on March 19, 2017 and two months later on May 18th she was rushed to Children’s in Dallas with a tumor the size of a softball in her chest pressing on her right lung, her airway, and her heart. We heard the words mass, tumor, oncology, ICU, cardio, oxygen, neutrophils, chemo, steroids…and so many others that I never in my life imagined hearing. One week later we had a diagnosis, stage 4 Lymphoblastic Lymphoma. I could stand here all night and tell you about her fight and how incredibly brave and amazing she was but, you all need to get home at some point.

We fought this aggressive tumor with a vengeance and every 1% complication that could happen, did. Fever, fungal work ups,infected diaper rashes, months in the hospital, relapse, ICU, breathing tubes, adult grade chemo, catastrophic brain damage, complete disability from chemo…..and finally a second relapse and then she was gone. January 4th of this year was the day I held my fuzzy headed baby for the last time.

Again, I could go on about all of that another time but tonight, tonight is about the fight for awareness and research so that no one else has to do what we had to do.

When Sophie was diagnosed, our world got so much bigger. We entered the world of IV pole tetris in the playroom, face masks, puke bags, therapy dogs, nerf gun wars with nurses, isolation, fear and great hope. The world where nurses are family and doctors become your best friends. You learn every name of the people at the check in desk and you have a ‘regular’ in the cafeteria. We realized that childhood cancer is not just cute, smiling bald kids on St. Jude’s Commercials. While they are cute and bald….and they do smile way more than you’d expect. That’s far from all there is.

It’s incredible to watch a child fight cancer. Any of the families here will tell you it’s the most terrifying experience of your life but also, it’s the most incredible. We see our kids battle things grown men would faint at.The resilience of these kids is astounding. But as incredible as they are….they shouldn’t HAVE to be.

Sophie’s fight and death have inspired a great desire to keep other kids from this monster. That’s what September is to me now. A chance to spread her story and the story of so many others to as many people as possible-To shine light on the lack of funding for new treatments, the lack of long term support as these kids grow and deal with lifelong side effects from the outdated ADULT chemo they recieve. September is a chance to show that COMMUNITY, LOVE, and MASSIVE AMOUNTS OF PRAYER are the only way to get a family through this.

So tonight is in fact to honor these incredible kiddos that are here tonight, the kids that are fighting in the hospital currently, and those that we have lost like Sophie, Brock, Kaylynn, Audri, Riley, Luke….and thousands others. But it’s also for everyone else. The friends and family. The church members. The community. Stand up and fight with us. Go Gold in September and the other 11 months of the year. Because Kids can’t fight cancer alone….and neither can their parents.

I’d like to quickly finish by reading something that I came across recently written by a cancer mom named Carol Baan in 2003.

I HOPE…

I hope you never have to hear the words, ‘Your child has cancer.’

I hope you never have to hear, ‘The prognosis is not good.’

I hope you never have to prepare your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

‘It’s going to be okay, Mommy.’

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred. And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’

I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’. While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…