Sophie The Brave indeed

Courage is defined as strength in the face of pain or grief so it’s entirely appropriate that Beads of Courage are given to children going through medical suffering.

In children’s hospitals across the nation, children get a bead for each different test, surgery, scan, procedure, medication, or hardship they face during their treatments. There are programs for Childhood Cancer and blood disorders, NICU, cardiac conditions, and chronic diseases.

When a child is older, the incredible Child Life Specialists are able to use these beads to explain what is happening to them. They bring their name letters in and let the child start their necklace. It’s an incredible way for kids to have a visual and tactile way to process what is happening to them.

20374563_735665063285518_1640961366467434664_n

For younger children, like Sophie, it’s a way for moms, like me, to keep track of what is happening. I am by nature an organized person so these beads were so therapeutic to me. Everyday I wrote down what Sophie went through, charter each thing in her head journal, and then requested the beads from our nurses every 21 days when the journal was full. Then I’d sit-usually late at night while my baby slept-and I spread out her ever growing necklace. I’d dump out the bag of 3 weeks worth of beads and start sorting. I put each color bead in its own pile and then made patterns. Yellow, black, white, rainbow, blue, bumpy…repeat. Green, pink, red, star…repeat. And on and on I’d go until I ran out of beads. Then I’d tie the necklace back together, walk over to Sophie’s bed, and hang it up on her IV pole….A few feet longer than it had been the day before.

I did it every 3 weeks for 7 and a half months. It helped me process what was happening. It told her story. I wanted every single thing she went through documented. It was her testimony. The physical proof of how brave and incredible she was being. I also wanted it to be able to show her one day when she was big enough to understand. These beads were so much more than a necklace.

22048131_10154899403056981_2280991038751715563_o

In December when we found out Sophie was terminal and we discontinued treatment, I almost stopped keeping track of her beads. I thought, what’s the point? She was dying. I would never be able to show her the beads. I’d never get to sit and tell her what each one meant and how she had overcome all of it. I’d never get the victory picture of her healed and whole, covered in thousands of beads. What was the point?

My mama, Sophie’s Mammy, helped me see that there was still a point. We didn’t know how long she had left but, however long it was…she still was earning those beads. She was still going through one of the hardest things a child could ever go through. Her story still deserved to documented. She knew I’d want that story-the complete story. She knew ‘what’s the point’ was my crushing grief talking.

So for 13 more days, I kept writing down each bead and giving the journals to our nurses. One precious nurse brought them in one night with ‘God is Bigger’ beads for me to add to her necklace.

And on that final day, January 4, 2018, Child life searched the entire hospital for one bead. The last bead. The butterfly.

 

Sophie was sick for 232 days. She has 1,344 beads. Her necklace weighs 3.5 pounds and is 45 feet long when stretched out. She had:

10-heart shaped-PICU

200-yellow-nights spent inpatient

26-red-blood or platelet infusions

116-Black-pokes with needles

181-white-chemo doses

137-rainbow-PT, OT, Respiratory, Speech

21-Acts of Courage

130-bumpy-days spent unable to walk…stuck in her bed

56-light green-X-ray, CT, PET, MRI, ultrasound

81-lime green-days with fever or neutropenia (no immune system)

28-Tortoise-spinal Tap or wound care visit

10-beige-Bone marrow aspiration

3-Orange-PICC placement & removal & port placement

13-magenta-ER visit or ambulance ride

76-purple-antibiotic infusions

35-times under anesthesia

20-aqua-tube placements (NG, G-Tube, Chest Tube, Foley Catheter)

52- grey-dressing changes

5-smiley face-hair loss/growth

5-Star-surgical procedures

125-light blue-mouth care

6-blue-clinic visits

3 fish- an upstream battle

1 Butterfly- flying free

And she earned every…single…one.

42745644_982443548607667_917027181857603584_n

Sophie’s beads tell her story. They tell of her bravery. They tell the excruciating journey or childhood cancer. And while I can’t ever sit with her and tell her about it…I CAN tell the world. I can tell anyone that will listen because, it’s her story, and it matters more than almost anything else in my life.

My Brave baby, I’m so proud to be your mama.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #BeadsofCourage #ChildhoodCancerAwareness #MoreThan4 #GoGold

The world doesn’t care that I’m grieving.

I’ve learned something in the last few days on our trip to Seattle for my sister’s wedding…the world doesn’t care that I’m grieving. My world felt like it stopped on January 4, 2018 when Sophie took her last breath but, it didn’t. Everything else outside of our little corner room on D6 at Children’s Health kept going. The clocks kept ticking, the hospital kept buzzing with activity, traffic still backed up, the sun still set, I kept breathing…and a whole host of other things kept going even though my body was stuck at 2:11 PM.

In the months following her death, I didn’t put myself into situations where i was around strangers much. I stayed in a bubble of people that know and care about me and Sophie. The world still moved on but, my people kept the bulk of change from slapping me in the face. Now, a few more months later, I’ve obviously re-entered the world a bit and am reminded daily that the world doesn’t care that my daughter died. My people care…but now that I’ve ventured outside of my comfort bubble of loved ones…the world is still big, it’s still turning, and it didn’t stop in January.

That became painfully obvious during our travels this week.

Grief does weird things to your brain. I now have, what I call ‘grief induced social anxiety’…I’m not a doctor but, I never had social anxiety or got overwhelmed easily before Sophie got sick. It now hits both Jonathan and myself pretty heavily sometimes…not all the time but, when it hits it’s pretty debilitating. Even with Zoloft on board.

In stressful situations, I get really overwhelmed all of a sudden, my heart pounds, I get really hot, tears tend to start leaking from my eyeballs and it leads to a full on sobfest.

And the world could care less.

On Friday, traffic didn’t care that we had a flight to catch for my sister’s wedding in Seattle. The 6 wrecks we passed had no clue that it had already been a hard week for me and neither did the construction crews that stopped us for almost an hour. The traffic in Seattle and the ferry schedules didn’t care that I was 200% overwhelmed by the time we got in our rent car at 7pm

Seattle time. None of it cared that I was on the verge of a full on panic meltdown. The rain and wet roads didn’t care that I was in tears because I was missing my sister’s rehearsal dinner on top of everything else. The world doesn’t care that I get anxious being away from home because I’m away from the cemetery…away from my girl. Then on our way home, yesterday, Hurricane Michael didn’t care that I was so ready to be away from large crowds and in my home on the couch under blankets. Airport delays didn’t care that the emotional hangover was setting in and I just needed to decompress at home for a bit.

Grief multiplies stress.

Stress multiplies exhaustion.

Exhaustion multiplies grief…..and on it goes, until it passes.

And the world doesn’t care but, Jesus does.

He knows the anxiety.

He knows the stress.

He knows the overwhelmed sense of panic.

He knows the tears.

He knows the grief behind it all.

He knows your heart.

He knows you.

He is the Shepherd that leaves the 99 sheep to find the one that’s lost.

And you know what? It’s already redeemed. Because we decided that driving home from Dallas at 1AM wasn’t safe so we got a hotel. Now, today, after 10 hours of sleep…we are going to visit the hospital and our sweet friend Addie. So yeah, Friday and yesterday’s travels were awful. But we had precious time with my family. My sister married her person in a gorgeous ceremony and we got to take in some incredible scenery.

We are thankful to be safely back in Texas. We are thankful to get to love on our nurses and friends.

So I’m calling that a win.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #AddiesArmy #WorldMentalHealthDay #1in5

Memories of Miracles: 9 months

Everything right now is ‘one year ago’. It’s pretty brutal. And today is no different.

One year ago, Sophie was declared cancer free. She was still extremely disabled and we were facing the terrifying stem cell transplant process but, she was cancer free. I still had such hope and purpose! I was adamant that if we could just beat the cancer then I would Be rehab mom for as long as it took. I wasn’t unrealistic…I knew we had a very, very long road ahead of us.

But, here we are one year later, and she’s been gone for 9 months. 39 weeks. She was born at 38 weeks. So, she’s been gone now longer than I was pregnant with her. And it sucks so much.

Now, one year later, we know that it was an absolute miracle that she went into remission.

You see, we had genetic testing done on Sophie’s tumor and on Jonathan and myself after she died. And we found out that Sophie’s Lymphoma was not hereditary. It wasn’t ‘our fault’. She just had some rogue cells get through her body’s cancer filter (very scientific terms). She also had a genetic tumor mutation that we never could’ve predicted or known about without this autopsy. Sophie had a PTEN gene mutation…there’s a big long definition for that but basically…her body genetically was unable to respond to chemo. Chemo never would’ve saved her.

So, now do you see why remission at all was a miracle?

Even the fact that she responded to chemo from May-August and was her sassy and Brave self was such a miracle. We very seriously, should have lost her in May….or August…but the Lord gave us such precious time caring for her and witnessing her incredible strength.

He has shown me that that little miracle of remission was for a purpose. Because Sophie went into remission, we were sent to Cook’s in Ft. Worth to get ready for transplant. At the time I was so upset about it because that meant leaving our beloved nurses and doctors at Children’s.

But God.

At Cook’s, we were placed on the neurological rehab floor instead of the cancer floor. Soph’s immune system was stable enough that she wasn’t at risk for infection and all of her doctors thought being on the rehab floor for intensive therapy was the best place for her. That floor was less restrictive than the cancer floor. Sophie didn’t have to keep her chest port accessed so I got to have her on my chest all day, everyday. We also could sign her out of the floor and take her on walks. Those were the best parts of our days. We bundled her up in her supportive stroller and explored the gorgeous grounds of Cook’s. Sophie’s favorite place was outside and at Cook’s we got to take her out 2 or 3 times a day. It was also November and December so Christmas decorations were everywhere and Cook’s does Christmas BIG! Getting to take Sophie out in the evenings to see the lights was another highlight of our days.

While we were there, Sophie ‘felt’ better. She was still disabled but, she wasn’t throwing up constantly or in a lot of nerve pain. We had her feedings under control and her medication combinations just right. She was making small progresses in therapy and smiling and laughing. We read books and sang songs, took sweet couch naps, walked laps on the 2nd floor and visited the chapel.

Those 6 weeks were hard because we were in such a limbo of uncertainty. But they were also such a blessing. Knowing what I know now, that her tiny body was genetically unable to beat her cancer…those 6 weeks of remission were such a gift from Jesus. The cuddles and time together….just precious. I will cherish that time forever. Each little memory…every miracle.

And today, we are one month closer to forever.

Tales from the cemetery

I went to the cemetery back in February to take new flowers. When I got there I saw a truck over across the field from me and didn’t think anything of it because……it’s a cemetery.

I sat there talking to my baby and I heard the truck start up and the door shut from behind me. Then, the truck started to come around the little loop thing toward me instead of out the other direction to the exit.

I thought….really?

They’re going to come drive literally next to me instead of go around?

Then I thought well they’re driving really slow so maybe it’s the guy in charge of cleaning up the plots. The truck stopped by my car and this sweet older man rolls his window down. He was precious y’all…..PRECIOUS and he says ‘you ok?’

‘Yes sir, I’m just sitting and talking.”

And he said ‘Well do you mind if I get out and talk with you for a bit?’

I said ‘Not at all.’

I really wanted to just sit and sob on my daughter’s grave alone but, I also didn’t want to be rude to this sweet man.

So he got out and slowly…very slowly made his way over to me and he said he had been ‘over yonder’ visiting his wife and bringing her flowers. I told him how sweet that was and how and I was doing the same thing for my daughter, who had died 5 weeks earlier from cancer. He got big tears in his eyes and said ‘Oh my goodness I’m so sorry! That breaks my heart. Cancer took my wife did too, but she smoked a lot’.

I asked him when she passed and he said October 13, 2014. He goes out to the cemetery once a week to see her. They were married for 57 years and have 5 children. 3 boys and a girl. They were high school sweethearts, he used to walk her home from school and carry her book bag.

Tears streamed down my face behind my sunglasses.

And then….

He pulled something out of his pocket…..it was the program from her funeral….in 2014. He said “Here’s her picture, I carry this with me so she’s always right in my pocket.”

Then asked me to write my name, my husband’s name and Sophie’s name on his wife’s program so he can pray for us.

Tears. So many tears.

Before he left he said “Well I’m here every week so if you see me and you need to talk, you just wave me over!”

I held it together until he had driven off then, I hit my knees and just sobbed my little heart out. Sobbed for my hurt. Sobbed for this sweet man’s hurt. Sobbed for the love of my Father to send that man to me on that day. It’s in the little things that He shows Himself to you. Unexpectedly. Always right when you need it.

And I’m thankful.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser

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.

40099458_669908796697972_2783307561368027136_n

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.

41643563_677832282572290_6929249684154220544_n

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.

34582126_593144524374400_8523138564827906048_n

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

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.
img_78311. 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.
img_03367. 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.

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.

img_4993

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.

img_3953

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.

img_4160

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.

img_4163img_4161img_4162