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

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

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

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

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

How do you fight such a world?

Today, one Texas girl is helping drive that fight.

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

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

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

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

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

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

Originally Published on Her View From Home

Sep 07

For Newly Diagnosed Cancer Moms

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

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

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

4. Emergent C is your new best friend.

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

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

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

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

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

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

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

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

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

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

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

Sep 04

8 Months…What’s next?

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

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

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

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

But it’s also good.

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

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

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

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

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

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

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

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

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

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

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

One Day Closer.

Aug 31

What September means now

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

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

Here is my speech:

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

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

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

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

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

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

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

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

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

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

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

I HOPE…

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

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

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

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

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

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

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

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

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

‘It’s going to be okay, Mommy.’

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

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

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

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

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

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

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

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

‘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 30

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

Aug 26

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

Aug 13

Grief is like Crocs….

I have very tiny feet, like I’m almost 30 years old and I can comfortably wear a women’s 5 ½ or 6. It’s sometimes quite frustrating to find shoes because stores usually only order a few boxes in those sizes so once they’re gone, they’re really gone. I also struggle to find shoes without some Disney character or pop singer on them.

My daughter, Sophie, also had tiny feet. She wore her super cute 12-18 month shoes from 12 months basically until she died at 2 and a half. Her FAVORITE shoes were her navy Crocs. Whenever we were leaving the house, the Crocs had to be on her feet. She’d bring them to me everytime…and was always disappointed if I wanted her to wear much cuter shoes. She loved them so much that we buried her in them. Well, we buried her in new navy Crocs because I kept her beloved, well worn in pair for myself.

I’ve decided that grief is like Crocs.

Crocs are ugly. They feel weird and uncomfortable when you first put them on because they have those bumps on the inside. You inevitably will get a blister from that rubber strap going across the back of your heel. Yes, they come in all kinds of colors and designs but, no matter what you do to them, they’re still ugly. Even if you add the cute little characters that you pop into the tops holes, they just still aren’t that appealing. Yet you wear them, like they were a gift from a relative and you don’t want to hurt their feelings even though you really want to exchange them for a pair that you actually would pick for yourself.

Grief is the same way. It’s uncomfortable and ugly when you first put it on. There’s bumps and it will rub a blister on you that leaves you feeling raw and limping. No matter what your grief looks like or what you do with it, it’s still ugly. You can cry, rage, ignore it, go crazy, stay busy, or lay in bed for days…they’re all ugly. Yet, you wear it and the Lord wears it with you. He is wearing the Crocs too. He feels the blisters. He is the bandaid that will soothe the raw skin.

“Surely He has borne our grief and carried our sorrows,” Isaiah 53:4.

Crocs, like grief, are not my first choice and I’d exchange them in a heartbeat. Nevertheless, all new shoes have to be broken in. When you wear Crocs for awhile, you eventually start to get comfortable in them. You can bear the bumps and your skin is a little thicker so a blister can’t form as easily. You still don’t really like them and you still think they’re so ugly but, you start to appreciate them.

No one chooses the life of a grieving parent. God didn’t ever want that as part of our lives. Death was never supposed to be in the picture. The world broke long ago and our Father took on the role of the ultimate grieving parent so that He could help us in our grief and promise us an eternity with Him and our lost children. Matthew 5:4 says “Blessed are those who mourn, for they will be comforted.” He comes alongside us in our ugly grief and raw hurt and he helps us break in the Crocs.

Originally published on Her View From Home

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

Aug 01

A lot can change in a year.

One year ago, Sophie and I loaded up and headed home after almost a month inpatient. We had no idea that the next 7 days would be the last days she spent at home, walking, talking, and being herself. Little did we know, her tiny body wasn’t responding to the chemo we’d been pumping into it for 12 weeks and her chest was slowly filling up with cancer filled fluid. Our ‘new normal’ was about to be shattered and changed yet again.

One year later, I’m sitting and thinking about our triumphant return home on this day.

I was by myself at the hospital and Dr. Slone came in to say “Her counts are at 460! You can go home!” Sophie was PUMPED to get to go home and see Daddy, play with her toys-especially her “chichin” (play kitchen) and sleep in her bed. I started packing the room while she bounced in the bed watching a movie. (It was probably Sing.) Thankfully, my mom had just taken a huge load of toys and supplies home for me the day before so I had less to pack. Our sweet nurse Callie carried Soph so I could take the piled up wagon! Callie sat with her on a bench watching the iPad while I went to the parking garage, loaded the car, checked the car seat, and drove around to the front of the hospital. Then I loaded up my baby and we said BYE FELICIA to the hospital.

I’ll never forget getting home that day. We had really been struggling to get her to eat. Her steroid chunkiness was pretty much gone and her little legs were so skinny and weak from being cooped up. But literally the second we got home, she started demanding all food. Grilled cheese, tater tots, “chetchup”, milk, yogurt, chips, rice, grapes….. guys…. she was a bottomless pit of food and we gave her everything she asked for!

It was a good day.

And now, one year later, she’s gone and we went to the hospital to remember and honor her then…we went home. It was a much less triumphant return home. No play kitchen waiting. No Sing on the tv. No Sonic trip. No tiny bald head and skinny legs. Just the two of us, coming home again without our baby.

But yesterday did feel a little different. It wasn’t as crushingly sad. We were able to see a few of our favorites and walk down those familiar hallways. I offered to go change a dressing, give some meds, and sit and do some charting for the nurses but, they said no. 🙂 We hugged necks, told stories of sassy steroid Punkin, shed a few tears, and ate in the cafeteria-Chicken quesadillas, tater tots, and our favorite strawberry water. I even got to pet BLAIR!

On the way home we talked about Sophie, our time at the hospital, and just how amazing she was. Jonathan even commented how, for the first time, leaving wasn’t unbearable. The hospital didn’t feel as much like “home”…which I think is a good thing. Hospitals aren’t supposed to feel normal and homey. You aren’t supposed to have to ask God to give you the strength to walk down the sky bridge and get in the car. You aren’t supposed to long to just sit at the nurses station and talk with your friends. You aren’t supposed to miss sleeping in those hard beds. But we do. We miss it all but, at the same time it’s hard to believe it all happened.

Even so, I’m thankful.

So thankful such a place exists because without it, we wouldn’t have gotten those 7 and a half months with Sophie. While it was hard and horrible…we got to love on her, care for her, watch her be brave, and touch so many lives. I’m thankful for the hundreds of people we’ve grown to love because of her. Doctors, nurses, techs, therapists, child life, dogs, cancer families, other kids, volunteers, church friends, new friends, grieving friends, online friends…..so many people that we never would’ve met without her and without cancer. I’m thankful for a place that we can still “see” her, walk where she walked, and hug people that loved her and witnessed firsthand what she went through.

I miss her so much….but I’m thankful.

“Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:18

Jul 29

She was never mine.

The Bible talks extensively about stewardship. It is a concept that our worldly broken hearts have a very hard time reconciling with. What we have in our lives does not belong to us. We are temporary caregivers. We stand in place of the real owner. Much like managers who govern in place of a king. This analogy reminds me of a Lord of the Rings reference when in the movie version of The Return of The King, Lord Denethor, the steward of Gondor refused to acknowledge that the true king had returned to claim his throne. Denethor forgot who the ‘owner’ of his kingdom was.

We don’t own anything here. Everything is God’s and we deserve none of it. This includes our children.

He gives them to us for a short time. Our job while we are here is teach them about the Lord. We teach them to say their prayers and love others as He loves us. We take them to Sunday School and sing ‘Jesus Loves Me;’ and ‘Amazing Grace’ to them as we lay them in bed. We long for them to become adults who want nothing more than to honor the Lord with their whole hearts and lives. We should be raising a generation that will lead others to Christ and serve the Lord as they walk in their calling.

So how then, do we accomplish that when our children die before they reach that adulthood? How am I doing my ‘job’ as a mother if my daughter has died before I could raise her up to be strong and courageous for the Kingdom of God? The answer is-she was never mine to begin with. My job was to care for her for 2 years and 9 months. My job was to battle for her as she fought Childhood Cancer. My job was to hold her as I helped walk her Home to her Heavenly Father. My job now, is to tell her story.

Luke 14:26-27 says, “If anyone comes to me and does not hate his own father and mother and wife and children and brothers and sisters and yes, even his own life, he cannot be my disciple. Whoever does not bear his own cross and come after me cannot be my disciple.”

After losing my daughter, I think I’m beginning to understand what this means. I’ve always thought-Lord you can have my money and my stuff but, I need my family and those important to me. When you’re truly a follower of Christ, you must be willing to give it all to Him-even your children. The scripture says we cannot be a disciple without giving them to Him. That is SO hard for our human brains to comprehend. We seek to be completely in control of our children and their well being. As mothers, we are genetically designed with the instincts to care for and protect our children.Our bodies carry and birth them- they literally come from us yet, they don’t belong to us. It’s not an easy thing to think about. The thought of ‘giving them up’ to the care and authority of someone else is ludicrous. Then you remember, they were never yours to begin with. They have always been and will always be His.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139: 13 & 14

Losing a child is the worst pain imaginable. There are days where I feel like I failed in my mission to protect and care for my daughter. It’s on these days that I lean on the Lord’s promises the most. He loves me and He loves my daughter. He has a plan for my life and He had a plan for hers. God’s Plan for my daughter’s life was that it would only last 2 years and 9 months here with me. His Plan for my life is that I was able to be her mother while she was here and now I get to share her story with the world. Having faith in His greater Plan doesn’t mean that I’m happy about losing my child or that I at all accept or understand why it had to be her. However, believing and resting in the promises that her death is not for nothing and that there will be a day when death is finally defeated brings me comfort and peace.

She is His and so am I.

Originally published on Her View From Home