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.

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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.

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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.

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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

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.

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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.

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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.

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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.

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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

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

The Question No Grieving Mom Wants to Hear

My name is Shelby, and I’m a mom without a child.

My 2 year old daughter, Sophie was diagnosed with Stage 4 T-Cell Lymphoblastic Lymphoma in May 2017. We had 12 weeks of her responding well to treatment when she unexpectedly had a MASSIVE relapse in August. Our doctors had never seen a child relapse so soon in 40 plus years of practicing.

We were in the club that even cancer families don’t want to be in, the ‘rare disease’ club.

We spent 9 days in the ICU getting 15 doses of adult ‘rescue chemo’ that saved her life and knocked her into remission but, it came with huge neurological consequences. Sophie began slowly declining and losing her independence. By the end of August she could no longer sit up, walk, talk, eat, play, use her hands, or do anything at all on cue. She basically ended up with the horrific side effects that 1% of patients end up with. She was truly unique, the ONLY child living in America with relapsed T-Cell and severe neurological deficiencies.

We started physical, occupational, and speech therapy trying to get her strong enough for our only shot, a Stem Cell Transplant but, her tiny body just couldn’t handle it. On December 22, 2017 we were told the devastating news that her Lymphoma had again relapsed and was invading the left ventricle of her heart. She neurologically couldn’t handle anymore chemo and we were out of medical options. At that time, we decided to withdraw palliative chemo and let her spend what time she had left without poison consuming her body. We spent 13 days singing, holding her, watching movies, and being together before she passed away in our arms on January 4, 2018 at 2:11 pm.

Ever since that day, I have been dreading the question. The question that I know I will eventually get asked when I go out and meet someone that doesn’t know my story. The question that I fear will knock me completely to my knees and shoot me back into that hospital room. What question is that?

So, do you have any children?

I know that as soon as I say something like “Well, I have a daughter in heaven,” that I’ll get the pity look and the awkwardness that comes with being different. People don’t know how to respond to that. I saw it for nearly 8 months when I’d tell people that my child had cancer and was in the hospital. People don’t know how to respond to open grief and that’s ok. I can’t fault anyone for that but, the thought of answering that question fills me with so much fear and anxiety. I am a mom. I carried a baby for 38 weeks, labored her into this world for 13 hours, and spent 2 years and 9 months with her but, I don’t have any children here on earth with me. I don’t spend my days at play dates, changing diapers, cleaning up toys, or making snacks. Instead I spend my days with my face buried in her hospital suitcase trying to find her smell.

Then, my God whispers, ‘Trust me with this.’

The question is just another unknown in this life. I have no idea when I’ll get asked but, I know what my answer will be and I know that no matter what, He is here for me. He is big enough to handle my grief and my fear. I can’t keep fear of a question from letting me go out and live my life. In fearing the question, I’m actually just afraid of facing more instances where I’m reminded of her absence. When in fact, nothing extra can remind me that she’s gone. I feel it all day, everyday and a stranger’s question doesn’t have the power to make or break me. I think fearing that question is just another way the enemy is trying to manipulate me into thinking God isn’t big enough to help me through this. He wants me to be too afraid to share my pain that I clam up and fall apart or even lie to avoid feeling uncomfortable. We are called to be overcomers of fear, to call on the name of Jesus when we feel weak and let him strengthen us with the truth of who is is.

Psalm 145: 18 & 19 says “The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him, he hears their cry and saves them.”

I’m still Sophie’s mom. I’m still here even though she isn’t. It would be insulting to the 8 month long war that she waged against cancer if I stay in fear of a question instead of using that question to share her story. So, maybe instead of dreading the question and seeing it as a source of grief, I should look forward to it. Maybe I should go out seeking people to share her story with. It won’t be easy. Nothing about this is easy. She was brave and I can be too because the Lord is my stronghold and I would miss so much by not sharing just how much he has done for me.

The Lord is my light and my salvation-whom shall I fear?

Psalm 27:1

Originally published on Her View From Home

The one my soul loves….

Statistics say that 80% of couples that lose a child end up ending their marriages.

When you get married all starry eyed with fairy sprinkles in the air you say your vows not really thinking you’ll ever need to follow through on the ‘bad ones’. You know for better or WORSE, for richer or POORER, in SICKNESS and in health. So long as you BOTH shall live.

When your spouse dies, you’re a widow or a widower. There’s no ‘term’ for losing a child because it’s that terrible. Marriage always takes work but, especially when you’re grieving. The loss of a child is so horrible-so impossible-so all consuming-that marriage takes a backseat to grief. Most days are spent just trying to function so, putting effort into your spouse is not even a thought sometimes.

It takes conscious, daily, purposeful effort to maintain a marriage during extreme grief.

Now-I’m not saying Jonathan and I have done a perfect job over the last year but, we have tried really hard.

When Sophie was diagnosed, we knew we’d be spending a lot of time apart between one of us needing to be with her and the other needing to work. We had no idea, of course, just HOW MUCH time she’d spend in the hospital. We had no idea I’d have to stop working entirely and that he’d have to go more than week without seeing us sometimes.

It was hard. So hard. But we were determined from day one to stay as a team. We knew that stress between us would not benefit her. So, we put communication first. I sent middle of the night novel emails to him so he’d know where my brain was at. We tried to get time alone at Ronald McDonald House, dinners together, and an occasional night at our home together. We prayed fervently for her but also for each other. And we made it through 231 days of cancer with very few arguments.

Then, she died.

And I could write a book on everything we’ve done in the last year (in fact I’m planning on writing it eventually) but, for now, I’ll just say. We don’t get it right everyday. The last 5 months have been hard. Unimaginably hard. But we are still here and we still love each other most.

Ephesians 4:2-3 says

“With all humility and gentleness, with patience bearing with one another in love; eager to maintain the unity of the Spirit in the bond of peace.”

Grace has been our theme. We have given each other HEAPS of grace. We’ve given each other the freedom to grieve differently and to not judge where the other person is at. One day I may have a ton of energy and be happy but, he may be deep in a hole of grief. The next day could be completely opposite. We’ve tried really hard to be there for each other when we need it and give space too.

Counseling has also been huge for us. We started grief counseling together in February and it’s been so good. It gives us a space to talk about what’s on our hearts with someone we love and trust and who know us and her. I can’t say enough about how valuable counseling is-for ANY marriage-but especially in grief.

We also have started planned date nights. We’ve found that a lot of the time-we don’t have much to talk about anymore because she was and is our whole life. It’s hard to talk when you both know what’s ‘wrong’. It’s also been hard for us to not just completely check out when we are at home. We don’t really talk about her or ‘it’. There have been many nights of Netflix and us staring at our phones because checking out is just….easier. So our ‘homework’ for counseling has been to write a date night on the calendar and a night where we talk about it. These designated nights, written on the calendar give our brains the freedom to plan out our week and things to look forward to.

I made a date jar for Jonathan’s birthday and the dates range from a movie night at home, going for walks, playing cards, going to dinner, hiking, double dates, group dates, to overnight dates out of town. They’re all different and most of them are cheap or free. We draw a date on Sundays and look at our week then write the date on the calendar.

It’s been SO good for us. Time to connect-without phones. Time to talk about it if we want but also talk about the future of just random stuff too.

We are always a work in progress and we don’t get it right all the time but, we’ve promised each other to put each other second behind Jesus but above anyone else.

I’d choose him and this life over and over again.