Oct 13

Time Goes On

One year ago we were visiting the hospital and our sweet Addie Leigh after a hectic day in airports coming home from my sister’s wedding in Seattle.

At the time-one of these nurses had a tiny human, One was cooking a sweet baby, I was in the middle of a chemical pregnancy, and two of them were just being awesome.

Today…one year later…Addie Leigh is done with hospital chemo and almost done with treatment. My sister has been married a year. The tiny humans are basically grown up, two of us now have perfect baby boys born 3 days apart, and another has a new blingy ring on her finger! And we are all still being awesome. (Obviously)

But time has gone on. As it does.

It may seem weird or morbid to miss them and I miss life at the hospital but….it’s where I see my baby. It’s where I walk where she walked and get to hug people that love her and us.

The people that held her and held us. The only people other than us that know just how brave my girl was…they know every aspect of those 8 months of our lives because they were there. They didn’t read about it on Social Media. They didn’t get text updates or secondhand stories. They didn’t try to make us feel ‘normal’. They didn’t avoid us or get uncomfortable around us. They witnessed just how sick she got and just how disabled she was.

They lived it with us everyday for 232 days. And I miss it.

I miss rounds. I miss keeping up with the Beads of Courage Journal. I miss writing everything in my notebook. I miss asking for meds and helping with therapy. I miss the terms that were part of my daily life. I miss unhooking the feeding tube and changing the sheets. I miss cleaning the room with alcohol wipes. I miss weighing diapers and hoarding bath wipes. I miss our walking route on the 6th floor. I miss catching up with whoever was on each day. I miss our techs, PA’s, NPs, and nurses. I miss Dr. Watt and Dr. Slone. I miss wagons and wheelchairs. I miss mouth swabs and diaper cream. I miss blood work printouts and medicine schedules. I miss gloves and hospital grade hand sanitizer. I miss the pink fuzzy pillow and the stack of clean blankets we changed out daily. I miss strawberry water and the best tator tots ever. I miss Princess Bibs and Minnie Mouse Hospital gowns. I miss the trains at Children’s and the stars on the ceiling. I miss massaging tiny feet and rubbing a fuzzy head.

I even miss the stupid talking elevators, beeping IV pumps, and sleeping on an egg crate.

I miss being around people who truly got it.

Most of all….I miss my sweet Sophie that all of these things revolved around. Everything about her…even the hard stuff because she was still here.

But just like this picture….time has gone on.

One year, 9 months, and 6 days.

Time without her and time away from life at the hospital that felt so normal. That time was so hard. So uncertain and so stressful but it’s part of our story. It’s part of who we are. And in a weird way, I love it. Just like I love these 4 (and SO MANY MORE on CCBD) and I love reminders like these of time spent with them.

Because ultimately these reminders remind me of my girl.

My brave brave girl.

And I can’t wait to take her little brother to this place and show him where she walked and all the people who love her too.

Feb 02

A year of lessons

I’ve been really thankful lately.

We made it through year one mostly in one piece…at least as ‘whole’ as we can be without Sophie.

Sophie.

I’m just so thankful for her.

Her life.

Our perfect time together as a family in our little pink house. Watching her with her daddy. Her laugh. Her brown eyes. Her sass and independence. Her excitement for literally everything. Even her illness because in that she taught me so much about myself, about what really matters…and about what it means to be brave.

Truly, unflinchingly Brave.

The past year has taught me a lot about myself in the sense that I’d never have ever painted myself as someone who could live after losing a child. My mom has always said ‘If anything ever happened to you kids they’ll just need to bury me next to you.’ And ever since I got pregnant with our first and then with Sophie I’ve felt the same way.

But then it happened. My child actually died. And I couldn’t just stop living. I couldn’t get in the ground with her. Life moves forward even when yours is standing still.

But how?

The last year of loss and the 7 months before that of cancer have taught me that it’s not possible without two things-faith and your people.

We’ve been held up and supported in overwhelming ways by so many different groups of our people.

Our family. Church family. Amazing friends who are family. Coworkers. Nurses. The Childhood Cancer community. Strangers. Online communities. Organizations. Businesses. Churches. Towns. Other loss parents.

The list is long and absolutely incredible. People matter in good times but especially the ones that show up and stay around for the bad stuff. That’s what love in action looks like. Just showing up and not forgetting.

God has put such amazing people in our lives and we can only pray that over time we can be there for them as they’ve been here for us. Some days I’m just overwhelmed at how much He has provided over the last 20 months. While Sophie wasn’t healed here on earth, God has been big enough to sustain and hold us through every step. The examples of grace and provision I could list are just mind blowing…maybe one day I’ll just post a list of it all. He has been good to us even in the bad. He was so good to give us Sophie for the time we had her and He continues to be good to us in her absence and in allowing us to share her story.

So yeah, the last year has been unimaginable and hard. But it’s also been powerful. There were weddings that gave us a new sister and brother. We had birthdays full of incredible love. So many Amazing trips and opportunities to share Sophie with thousands. We’ve grown as individuals and as a couple. Our marriage is in a place that can be hard but it’s also the greatest joy in my life.

And I’m thankful.

Dec 28

When God’s provision doesn’t feel good…

If someone asked you what provision means to you, what would you say?

I feel like most of us would say being financially stable, our family’s health, new homes, overall happiness, etc. are all examples of how we are provided for.

Nothing is wrong with wanting these things and seeing them as good provision from the Lord.

But, what if provision doesn’t come if n the way you expect? It’s challenging for us to see provision when it’s different than what we think it should be.

In Scripture, ‘provide’ can be translated to ‘to see’….So in Genesis 22 when Abraham names the mountain where he’s spared from sacrificing Isaac “The Lord Will Provide”…we can also say “The Lord Will See.”

He sees us. He always sees…therefore, He always provides. And His constant awareness of us means His constant provision.

Faith means knowing that every act of provision in my life is for MY good and for HIS glory. Even if it doesn’t look good to my worldly eyes.

Am I saying that Sophie’s illness and death are good? Absolutely not. I’m saying that I believe the Word of God is all true at all times. And because I believe that, I believe that He ONLY acts for my good. Sophie’s death was not good but, I believe He is and will continue to use her for my good and His glory. I believe that His plan for her life, my life, and the lives of those she has affected is so much bigger and more complex than my brain will ever be able to understand while I’m here. I believe that I can do ALL things through Him. I believe that He sent His Son to die so that I could be reunited with Him and with Sophie in eternity. And I also believe the hard stuff. I believe that in this world there will be trials. I believe that suffering perfects my faith. I believe the world is broken and that death, pain, and grief are part of being here. I believe it all. Does that make sense?

He’s providing all of it. The grace to get through the suffering. The whispers through His word that fortify our souls and encourage us. The joy that comes from the promises of redemption and victory over death, grief, and tears.

Yes, provision of the things we need to survive here on earth, is important but, the real provision… the provision for our souls…the fact that He sees us…that’s where we get our confidence to keep going.

He sees you. He’s with you. He will provide. Always.

Share with someone that might need a reminder that in the twists and turns of their life…they are seen.

*Song lyrics from Todd Wright Band

https://www.praisecharts.com/songs/details/71499/cant-see-sheet-music/

#SophietheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #childhoodcancerawareness #lymphomasucks #cancermom #lossmom #childloss

Dec 22

The day time stood still…

I remember every second of December 22nd last year. There are a lot of the details of Sophie’s Lymphoma battle that are fuzzy but this day…this one is burned into my memory like a brand. The second worst day of my life.

On the 20th we had been given the ‘all clear’ to start the numerous tests needed to get Sophie’s stem cell transplant process started. We had a full body CT Scan and GI Tract ultrasound on the 21st. Then the BIG test day was the 22nd.

Aunt Jacy spent the night with Sophie and Jonathan and I got back to Cook Children’s in Ft Worth early that morning. We walked in to Sophie screaming and Jacy was very frustrated. The team at Cooks had come in to start an IV on Soph for her sedation…even though her chest port was accessed. Which is annoying but the port in an infection risk so I get them not wanting to go there. But Jacy had told them that Sophie was a very hard stick…starting IVs had been hell for us for almost 8 months…and that they needed to call the IV team because they have this magical red light that finds a good vein every time. They didn’t listen to her and had already tried to stick Sophie on one hand and in both feet (even though Jacy told them no one, in 8 months had ever gotten a foot line to go in).

Now, disclaimer-Cooks is AMAZING and the staff was amazing….they just didn’t know Jacy or Sophie because we’d only been there for 5 weeks. And they apologized for not listening. It was just very hectic to walk in on an already stressful day to Soph already screaming.

But, we got the IV in finally and calmed her down.

Transport came and took us downstairs to get started. Cook’s didn’t have a PET Scanner so we were escorted across the sky bridge to the next door Methodist Hospital.

It was raining.

A long morning of waiting, sedation, waiting, PET scan, waiting, spinal tap, waiting, bone marrow aspiration, waiting, hearing test, waiting, and heart echo then we were back in our room with a very tired baby. And it kept raining.

My mom, Mammy was there by then to trade off with Jacy and we waited. Results usually took at least 24 hours and with it being 3 days until Christmas, we weren’t expecting any news. So when our nurse came in and said our doctor was coming at 3:00 to conference we were concerned. But at the same time…this was our first day of testing at a new hospital, with new doctors, and stem cell protocol is a big deal so I thought ‘maybe they rush things for stem cell’. It was hope in my heart trying to keep out the panic.

You see, we suspected it was back but we hadn’t said it out loud…not even to each other. We rationalized the bed soaking night sweats with the fact that her tiny body was so weak and exerting her for 3 hours a day in therapy was causing it. We knew her…we knew a spike in her counts was a bad sign but her doctor was positive…and again new hospital-stem Cell…they knew what they were doing. But we knew her. We also knew the chances of it coming back were high. We knew we were fighting an uphill battle…the Everest of hills.

Then.

3:00. Time stopped.

I knew the second he walked in that it was back. His face said it all. He had been crying. Out doctor, the pediatric stem cell expert…one of the best in the nation…had been crying before coming into our room to tell us….it was back….it had spread….it was in her entire chest cavity, her bone marrow, her spinal fluid, and was now invading the right side of her heart. And we were done. She was done. Her poor little body wasn’t strong enough for the kind of chemo that would attempt to save her life. If we had tried that, she likely would’ve lost what little brain function she had left…she would’ve suffering more…and still would’ve died.

I was in bed with her and just fell on top of her. Jonathan leaned against the sink counter in shock. My mom had to sit back onto the couch.

She was going to die.

How long? Was our next question.

You know most people hear ‘3-6 months’ or ‘1-2 months’ and I don’t know what i was expecting…because nothing obviously was an expectation for this moment. But when he said…days, maybe hours. I just wasn’t expecting that. The chemo we were giving her was acting like a colander, stopping some cancer but letting some through. So no one knew how long it would take to take over once we took that chemo away.

A lot happened after that. Shocked phone calls to get the word out. Questions of what do we do now? Sobbing on the floor of the chapel. Sobbing in the shower. Walking aimlessly in a fog. Everything was in slow motion. Having the ‘funeral’ conversation.

Because no one ever sits with their spouse and says ‘hey babe, what would our child’s funeral look like? What funeral home should we use? Caskets, Flowers….’ imagine that conversation….then multiply it times 500 and you might get it.

But we had to have that conversation. While the shock was fresh… before it set in. I wanted that out of the way. I didn’t want to be worrying about planning things after. I just wanted to be her mom.

And that’s what I did.

The next day, two days before Christmas we were moved back to Children’s Health in Dallas. Our families helped us pack the room and Ronald McDonald and we put our baby in her car seat for the last time and drove her. I sat in the back next to the car seat….just as I’d done hundreds of times before….but this would be the last.

The fact that that was able to happen at all, let alone so quickly, was a miracle from God.

Even though Cook’s was great…Children’s was home. They knew and loved and cared for her for 7 months. And I wanted them caring for her at the end. Because I was done being nurse and caregiver. I wanted to get in that bed and be mama. To read books, watch movies, sing songs, rub hands, kiss cheeks, and stare. Just stare at her while I could.

And I did. For 13 days. When time stood still.

Oct 13

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.

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.

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.

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

Oct 11

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

Oct 05

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.

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.

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…

‘The cancer has returned’ or ‘The tumor is growing.’

And your friends become even fewer.

I hope you never have to experience any of these things…Because…only then…

Will you understand…

Thank you so much for being here and for supporting Gold Network. I hope you’ll Go Gold with us all month long.

Aug 07

Another month closer and another date dreaded…

It’s been 7 months and 3 days since I held my baby and felt her weight on my chest. I’ve read about amputees that feel phantom pain where their missing limb once was and that’s what grief feels like sometimes. My arms will physically ache to have her weight in them. My chest will feel heavy like she’s asleep on it. My fingers can feel her fuzzy head and soft skin. It’s comforting and agonizing all at once. I miss her more than I think I’d miss an arm or a leg.

This week is a tough week. There have been a lot of tears this week. More than there have been in awhile. I mean there are small tears pretty much daily but…this week has been hard. One year ago this week was the week of relapse. Today, one year ago, we were at home with Sophie for the very last night. On August 8th she was readmitted to the hospital with 16oz of pleural fluid next to her left lung. On the 9th, we found out it was filled with cancer and that our doctors didn’t know what to do next. On the 10th, Sophie crashed during her PET Scan and bone marrow biopsy and ended up intubated, sedated, and tied down with a chest tube in the ICU. Between the 11th-15th she got 15 doses of the chemo while under sedation and intubation that would take her independence away. The rest of the month was spent watching her slowly lose things. First it was standing, then sitting up, then being able to grab things, point her fingers, suck on her pacifier, swallow her spit, turn her head, move her limbs on commands, and her voice…all slowly went away.

It all started one year ago today. The beginning of the end.

You can imagine that’s why I’ve been dreading August. For a cancer family, especially one where you lose your child, it’s not just Birthday, diagnosis day, and death day. It’s all of these other dates that are burned into our brains like a brand. Trust me, I’d love to not remember dates, but I’ve always been a dated person. I’ve always had 3 or 4 calendars and….when Sophie was sick I chronicled everything that happened to her everyday in my notebook. Dates and what happened on them matter to me. But this week? This month? I wish I could forget the significance of these dates.

We did something last week that I’ve wanted to do for months but wasn’t ready for. We had our families send us all of the videos they have of Sophie on their phones. We have both watched every video on our two phones so many times that, we have them memorized. So getting this whole album of ‘new’ videos is such a gift. Many, if not most of them, I’ve never seen so it’s like I’m seeing her…a memory of her that I didn’t have but now I do.

How thankful I am for technology. We have friends that lost their daughter to Leukemia 30 years ago….they don’t have videos and pictures just readily available in the palm of their hands. But we do.

The precious videos of healthy Sophie and pre-relapse Sophie are soothing. They make me smile and fill my heart with joy because she’s just so.dang.cute! Everything she did and said was so cute! But the sick videos? The videos of her trying to talk and trying so hard to control her limbs? The ones where she’s crying in therapy because sitting up with 2 therapists assisting her is so frustrating? Videos of her fuzzy little head and sweet smile as she watches her favorite shows? Those precious noises she made the last few months…those dark brown eyes that I love so much…

Those stab me straight in the heart. I want to pick her up off of the screen and hold her to my chest. Watching them….I just can’t believe that was her life. She was stuck in that bed for 130 days. Disabled, frustrated, and unable to stop anything that was happening to her. I’m so thankful for her life but I just can’t believe that was part of it. But I can’t not watch them…they’re my baby. They’re how she looked and was at the end of her life. They’re my sweet Punkin that I cared and advocated for so fiercely. They’re of the part of my heart that I fought for until we left the hospital on January 4th.

And they’re all I have left. So, I watch them and I laugh and cry and close my eyes listening to her voice. I listen to her and Jonathan call me ‘Mama’. Then I hit my knees on the bedroom floor and sob because it’s so very hard, but comforting too. They are proof that she was real. She happened. She was amazing. She fought like hell. And she was so very loved.

In an effort to help my heart this month, I’m doing an August Scripture Challenge with verses showing that #GodisBigger on Sophie’s Facebook page….I’d love for you to join me as I share my heart and what the Lord is showing me this month. I’d also greatly appreciate prayers as this week and month play out. 💜

“Hear my cry, Oh God, listen to my prayer; from the end of the earth I call to you when my heart is overwhelmed. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy” Psalm 62:1-3