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

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

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.

To EVERY mom….

To the one with healthy children in your lap, YOU are a great mom. Whether you work full time or stay at home, you are amazing and deserve to be celebrated everyday but, especially today. You sacrificed your body and your own well being over and over again and I know you don’t regret any of it. You are enough and you are appreciated even when you don’t feel it.

To the one holding a child that someone else carried inside of her body, YOU are a great mom. Whether you faced infertility, surrogacy, chose to adopt, or have biological and adopted children, you are amazing and deserve to be celebrated everyday but, especially today. You deal with lawyers, paperwork, court dates, birth parents, unknown health issues, and I honestly can’t even imagine what else and yet you love these children as if they came from your body because they live in your heart.

To the one holding a child that someone else carried inside of her body until that child can be placed with a forever family YOU are a great mom. Whether you foster often or are fostering to adopt you are amazing and deserve to be celebrated everyday but, especially today. You care for kiddos that have been through unimaginable hardships and deal with all kinds of emotions. You take them into your home and love them even knowing you will probably have to give them up and trust ‘the system’ with them. You are a hero and you make are changing lives.

To the one who longs to be a mom but, has hit roadblocks YOU are a great mom. Whether you walk the IVF road, suffer miscarriage after miscarriage, stick yourself with hormone shots, track ovulation calendars, and cry each month when that test says negative, you are amazing and deserve to be celebrated everyday but, especially today. People say ‘Why don’t you just adopt?’ and ‘You should stop putting yourself through this.’ and yet, you continue on longing for the plus sign on that test and the heartbeat on that sonogram. You are strong and resilient.

To the one who held her child here on earth but, had to give them back to Heaven, YOU are a great mom. Whether your child was born sleeping, lived a few hours, lived several years, or died as an adult, you are amazing and deserve to be celebrated everyday but, especially today. You’ve suffered the most painful thing that anyone could suffer and yet, you get out of bed each day and live your life. You say their name, visit the cemetary, keep their favorite things, and live your life wondering what could have been. You are not alone. You are brave and you are still a mom even if your arms are empty.

To the one who carried a baby in your body and then gave that baby to another YOU are a great mom. Whether you were a surrogate or decided someone else could give your child a better life, you are amazing and deserve to be celebrated everyday but, especially today. You carried that life inside of you and selflessly gave them the life they deserved with a family that will love them with their whole hearts. You are incredible and you are worthy of love.

To the one who has a strained relationship with your child, YOU are a great mom. Whether the strain is your fault or theirs, you are still amazing and deserve to be celebrated everyday, especially today. You are doing the best you can and love your children no matter what. Forgive yourself, forgive them, and know you are very loved.

This is my first Mother’s Day after the loss of my two-year-old daughter to cancer, and for the first time, I realize Mother’s Day isn’t flowers and rainbows for everyone. I’ve spent 29 years inside a bubble that has never known loss; four months ago that bubble exploded. But I also know no matter what road we’re walking in this adventure called motherhood, we are all great moms.

I hope you are celebrated even if it’s painful. I hope you have people surrounding you to hug you, love you, and see you for who you are

Originally published on Her View From Home

I tried to wean off of Zoloft and couldn’t….And that’s ok.

I had never really been aware of the world of anti-depressants. My life has been relatively uneventful-with the normal ups and downs that most of us go through. I knew people on medication for depression but never understood.

How can you be THAT sad that you can’t just be positive and make the best of your circumstances? How can someone be THAT unhappy ALL the time to need medication?

I didn’t get it.

I felt bad for people going through it.

Then my 2 year old was diagnosed with Stage 4 aggressive Lymphoblastic Lymphoma and my little uneventful world blew up.

For 6 months I was positive and focused on one thing-getting her through this. I could handle anything cancer threw at me if it meant I’d have my baby whole and healed eventually. Even when a massive relapse and chemo induced brain damage took her independence…I still had a purpose. Caregiver and advocate 24/7. I was willing to be a therapy mom for as long as it took, years if necessary…we just had to beat the cancer first.

Then we got stuck in limbo. At a rehab facility trying to get her strong enough to survive her only option, a stem cell transplant. But her cancer was so aggressive, waiting ran the risk of a second relapse and if that happened, we were done because her poor little body couldn’t handle more strong chemo. I was stuck in uncertainty with no plan. No end in sight. Nothing but my fragile baby fighting every single day.

It was then that I understood depression.

I was completely overwhelmed. I cried approximately 4 times a day. I was getting frustrated with my daughter who couldn’t help or control anything she was doing or what was happening to her. I was having to FORCE myself out of bed when I stayed at Ronald McDonald House. I felt crazy.

I realized that I was absolutely no help to my daughter or to anyone else if I was falling apart. This wasn’t about me. It was about her. So I called my doctor, made an appointment, and the next time I was at home a 24 hour break from the hospital, I went and got my Zoloft prescription. I’m sure it was a placebo effect but I felt better just knowing that I was taking control of my mental health.

And then, one month later, we found out she had relapsed again and her body was done. 13 days later, she was gone and I fully credit Jesus and my medication for getting me through that. I was able to spend those precious days clear headed and focused on her. I was able to wake up and even in my sorrow, be there for my baby.

Now, almost 8 moths later, I still credit the medication and the unending grace poured on my by the Lord for helping me get out of bed each morning and be productive on most days. But recently I was curious to see if I still needed it. Since I have never been on any type of antidepressant, I honestly just wanted to know when/if it was time to wean off. I’m not by any means against staying on it but, I figured if My body no longer needs it, then great.

So I consulted my nurse practitioner and she gave me a schedule to wean off of it but after the first week I was back in full blown depression and I couldn’t do it. The way I was feeling was the confirmation I needed that my body does in fact still need it. And that’s ok-I’ll stay on it as long as I need it.

I get it now.

If I only need it a few more months? That’s ok.

If I need it for a long time? That’s ok.

If I try to wean again and can’t again? That’s ok.

If I need it forever? That’s ok.

Whatever I need…is ok.

It’s time to get rid of the stigma that people who need medication for their mental health long term are broken, crazy, or less than. Because for me, the medication keeps me from being completely broken. It keeps my head above water.

I am one in 5.

And it’s ok.

#SophieTheBrave #DoMoreForSoph #Godisbigger #OneDayCloser #1in5 #mentalhealthawareness #Selfcare