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.

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.

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

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

Cancer: One Year Later

As a mother, you worry about all kinds of things. Is my child hitting milestones? Is she eating the right things? Are we raising her well? Does she have an ear infection? All of the ‘normal’ things that parents think about as they raise their children.

Cancer was never even one of my worries.

Cancer happened to other families. We heard stories and said ‘Oh gosh I can’t even imagine. I don’t know what I would do-I just wouldn’t be able to get out of bed.’ We changed the channel when the St. Jude commercial came on because bald kids made us uncomfortable. We put our change in the ‘Kids Miracle Network’ jars because we hated having change in our pockets. We’d donate $20 to a GoFundMe, signed up for a 5K, and bought some T-shirt’s to support ‘those poor cancer families.’ And then we went about our sweet little sheltered, happy life.

There’s nothing wrong with that life. Until your eyes are opened to just how BIG the world really is.

On May 18, 2017, I went to work-like any other weekday. We had a field trip that day-which is a stressful day for a teacher. I was hot and sweaty and exhausted after a full day of wrangling 24 kiddos, handing out lunches and waters, riding on a school bus (which is horrible), and walking around with a backpack full of first aid, permission slips, inhalers, and sunscreen. I got home to my Sophie-like every other weekday. Her grandmother updated me on her day, said goodbye, and we has our after school home time-like every other day.

Except. Sophie had been hospitalized in March for a weird breathing episode and then diagnosed with asthma a few weeks before and we were monitoring her breathing and doing breathing treatments 3 times a day until we could get her into an allergy doctor. That was stressful but, she handled it like a champ and did her ‘breathings’ with no problems. Heck-half of the time she would fall asleep holding the mask on her face! It was so cute. When it was done, she’d pop up like she had been awake the whole time and shout proudly-ALL DONE!

On this day-she was breathing really hard and I didn’t like it at all. So, I did what most moms do-I called for opinions. I called my precious friend Monday, a nurse and fellow asthma mama and told her my concerns. She advised me to go ahead and do Sophie’s bedtime breathing treatment early and take her to the ER after that for evaluation because, you don’t play around with a 2 year old’s breathing. I called Jonathan and told him to head home for what would probably be a long night. Then I pulled my little love into my lap and started up her treatment. As I’m doing that I decided to call my coworker Toni-another asthma mom-to tell her what was going on and to let her know that I might need to take off the next day-we had track and field day the following day so this was SO not a great time for us to be sick! As I’m on the phone with Toni-my world fell apart. Sophie went limp in my lap and started turning blue. I screamed ‘TONI SHES NOT BREATHING I HAVE TO CALL 911!!!’ And hung up. I’m holding the breathing mask on Sophie with one hand and shakily calling 911 with the other. She-thankfully-came back around quickly but was still very pale and lethargic in my lap. At that exact moment Jonathan walked in, with no clue what was going on. He walks in to us on the floor, Sophie unconscious and me sobbing on the phone. The Lord was very obviously working in him right then because he immediately grabbed the diaper bag, a phone charger, the iPad, and my wallet with insurance cards in it. He even grabbed my shoes because I was barefoot.

The 911 operator stayed on the phone with me until The ambulance arrived and I carried her out, barefoot, with Jonathan right behind us. We got her on the gurney and oxygen on her and she came around very quickly. We took off and Jonathan-bless his heart had to follow us in the truck.

Long story short-we ended up at the Children’s ER with an X-ray of a softball sized tumor in her chest. We were wheeled up to the ICU at 4 in the morning because she couldn’t lay flat. Her bed was propped up to sitting because when she laid flat, she stopped breathing due to the tumor pushing on her airway. Our world was halted.

We started steroid chemo the next day to stop the tumor’s growth.

Cancer. A word no parent should hear.

Most of you know what all transpired from there and I honestly can’t write all of that out right now. But the point is-Childhood Cancer happens more than you think it does. It happens whether you’re rich, poor, white, Black, Hispanic, happy, sad, Old, or young. It’s real. It happens. And you’re not a cancer mom…..until you are.

One year later and I’ve learned way more than I’d ever want to learn.

I’ve learned words and acronyms like Nelarabine, mediastinal mass, NPO, PRN, stomapowder, chemo rash, fungal workup, PET Scan, ANC, platelets, hemoglobin, neutrophils, immunosuppression, Bactrim, neuropathy, isolation, port access, bath wipes, spinal tap-LP, intrathecal chemo, vincristine, SCU, neuro-rehab, chemo toxicity, Methotrexate, zofran……..And so many others.

One year since my world became much bigger. While I’m not thankful that my girl is gone…I am thankful that I’m more aware of how big the world is now. I’m more aware of the HUGE need for childhood cancer funding. I’m more aware of how incredible nurses are. I’m more aware of what parents in hospitals go through. I’m more aware of the long term need cancer families have…..I’m more aware. And because I’m more aware, I can do something about and you can to.

So today-in honor of one year since Sophie was diagnosed-will you consider #DoMoreForSoph and giving to Childhood cancer research? They currently get 4% of government cancer funding.

4%

Our favorite research organizations are:

Gold Network of East Texas

St. Baldricks

Alex’s Lemonade Stand

Sadie Keller Foundation

All of these support childhood cancer research, support families currently in treatment, and help families that have completed treatment but still need long term support.

Christmas Miracles?

Big news from Team Sophie. We are finally getting out of Limbo and starting the stem cell transplant process! I have a lot of feelings about that-happy, excited, scared, worried, thankful, terrified, stressed, relieved…mostly I feel insane 90% of the time but, oh well….I’m owning that. There’s also about 693 details to go over in this process but, it’s late and my child is actually asleep so, this needs to be relatively short so I can sleep too. I mean, we all know I don’t write anything short, again I say, oh well.

So, Sophie finished her 4 week chemo plan on Friday and today we were supposed to meet with her doctor to discuss what’s next. We were expecting him to be in favor of more chemo, more therapy, and no transplant but, he came in and kind of shocked us. The team agrees that it’s go time for transplant. Ideally, we’d spend months in rehab getting stronger before transplant but, we just don’t have that kind of time. It’s a miracle that her cancer has (seemingly) stayed at bay on this light chemo regimen and no one is comfortable waiting much longer. It’s terrifying waking up each day wondering if there’s cancer exploding in her body while we wait. Every tiny new symptom brings on fear of relapse and a minor panic attack. (I maybe spent 10 minutes on my bedroom floor trying to keep breathing the other day when she had a weird breathing episode.) We just aren’t going to get a ‘perfect’ situation. She has made enough small progress in therapy that her team feels the risk of a life threatening complication is significantly lower. She’s doing a much better job protecting her airway, swallowing her spit and even some liquids in speech, she’s tolerating sitting up with help, can move her head around on her own, and is even trying to cough and clear her throat. That all seems like small stuff but, she wasn’t doing ANY of those things a few months ago. Baby steps. She’s essentially like an infant and plenty of infants have survived transplant. SO BASICALLY her doctors think the risk of going to transplant now is far less than the risk of her cancer coming back if we wait any longer. We obviously are still worried and apprehensive but, already it feels like a slight weight is lifted simply because we are back on somewhat of a plan. Transplant is our only option for possible long term cure so, it’s now or never basically.

Today is has been 7 months since the day our world stopped. Anyone else see the irony there?

Like I said above, there’s A LOT of detail that I will explain in due time but, for now, here is a basic timeline of what the next few weeks will look like.

Tomorrow, we will start the ‘transplant workup’ process. All that happens tomorrow is the nurses will draw quite a bit of blood to send off for literally a TON of testing. They will test for anything under the sun-all of the basic levels they always test for, any disease or virus that could be hiding in there, and a ton more than I don’t even know about. They will also call get the cord blood samples reserved for Sophie sent to Cook’s. Wednesday, she will be going under anesthesia for a repeat PET Scan, bone marrow biopsy, and spinal tap to insure that she is still cancer free. Her counts haven’t shown any reason to think she’s not still cancer free but-it’s still nerve wracking. At some point this week they’ll also do a hearing test and an EKG to check her heart function. That’s pretty much it for now, she’ll continue to get daily therapy while we wait. At some point next week, she’ll go under to get her central line placed in her chest for more IV access during transplant then we will sit down with her team for one more meeting to go over all of her work up results. Around January 2nd we will leave the rehab floor and head up to the transplant unit then she’ll start her conditioning chemo on the 3rd. She’ll get pretty strong chemo from the 3rd through the 10th then TRANSPLANT DAY is tentatively set for January 11th. I’ll write all about what transplant will look like soon-for now we have to get there.

Please don’t forget about us and keep praying! We need it now more than ever!

1. Pray that Sophie handles anesthesia well on Wednesday and that all of her tests show that she’s still cancer free. Add to that continued prayer that she’s healed forever-transplant is her cure!

2. Pray for divine progress over the next 2 weeks in therapy-that Sophie can take advantage of every second she has in therapy before transplant. Christmas miracle progress! Full restoration.

3. Pray head to toe for full body protection during transplant. Pray for her airway and respiratory system. Pray that none of this makes her neurological symptoms worse.

4. Pray against ANY infection or sickness-she will have ZERO immune system for awhile and that’s scary. Pray health over her caregiver team too! We are all chugging Vitamin C.

5. Pray for our Christmas. It looks very different this year and to be quite honest, I’m dreading the next few days. Pray for joy.

Update: 11/17 Back in Limbo 

I’ve been waiting to update until I had all of the details because quite frankly-I didn’t even have all of the details until like yesterday. Sophie is not going to transplant right now. While, that is still our ultimate goal-it’s our only goal actually-she just isn’t physically strong enough for it. Transplant will knock out her entire body and she just is so depleted physically that her doctors think the risk of her dying from a respiratory complication during transplant is way too high. 

Now, I know the exact question everyone has -Didn’t you head to Cook’s for transplant? Yes, we did. However, when her transplant doctors saw her in person and were able to examine her…they just couldn’t in good conscience approve her yet. 

So what does that mean? A few things. 

1. It means we will be transferring downstairs to the Cook’s inpatient Neuro-Rehab floor hopefully today. Thankfully insurance is letting us stay here since this rehab will directly correlate with transplant. This rehab will also be a much better fit for us since it is in the hospital. She will get intensive OT, PT, and Speech but will also be under the direct supervision of the neurology team and her oncologists will still round on us daily. There won’t be any interruptions in her meds and any blood work or tests that need to be run won’t have to be sent to another facility. We get to do everything here in the hospital so that’s just so much better for our particular situation than an outside facility. 

2. Unfortunately, taking more time in therapy means we have to do more chemo. For those new to all of this, Sophie relapsed in August only 12 weeks into treatment-that just doesn’t happen. We almost lost her in the ICU in August and a very aggressive chemo called Nelarabine saved her life and killed 97% of her cancer. However, this drug is not used very much at all, let alone in 2 year olds. It was a Hail Mary pass that had a 40% chance of working. It saved her life. But it came with pretty terrible neurological side effects. Sophie has lost all of her motor function. She cannot sit up, roll over, crawl, walk, eat, talk, or do anything independently. She also has nerve damage that causes her arms and legs to flail randomly without control. There’s not honestly a lot of longer term data on the recovery from this because frankly-not many kids that have had to get this drug have lived for various reasons but that’s a whole other conversation. So because of this extreme neurotoxicity several if not all of the stronger chemos are completely off the table for Sophie. She can’t handle it. Because of this a Stem cell transplant us our only long term-hopefully-curative option. In order to receive a transplant, she has to be 100% cancer free and be physically able to handle the process. Well, right now she is cancer free but again-not physically able to handle it. Her cancer is so aggressive that taking time for therapy without chemo would almost certainly result in her cancer returning. If her cancer returns we are pretty much out of options because she can’t get strong chemo anymore. SO her doctors have come up with a less intense chemo plan that she will be on during this therapy time that will hopefully keep her in remission and get her to transplant. 

3. The chemo she will be getting is a nightly G-Button chemo called 6 MP that she’s been on since September and she will get weekly low dose IV Methotrexate instead of bi-weekly high dose Methotrexate. They are hoping that since these two drugs are what got and kept her in remission before that they will continue to do just that. They also are hopeful that the lower dose Methotrexate won’t compound her neurological issues. 

4. This means that we will spend the next weeks or months literally not knowing at all what is next. There is no magic number of days in rehab that will make her ready. So this hospital stay could be very very long. It will be a week by week evaluation basis and as soon as her doctors think she is ready-we will redo her PET Scan and bone marrow biopsy to see if she is still cancer free. If she is still cancer free we will go to transplant. If not, we will discuss the best options to give her quality of life for however long we can. 

                                                                                        
So that leaves us back in limbo. Hoping and praying daily that she stays in remission while getting stronger. Praying that there’s divine and miraculous healing of her brain and nerves that results in huge progress and strength in therapy. Leaning on the fact that we have never been in control and that this is no different. Sophie is kind of writing the book for relapsed T-Cell Lymphoma with Nelarabine toxicity-both of which are so rare there’s not much data on either. We could sit here and think why in the world did we have to get both? Why in the world does our kid have to be the test dummy? Why? Why? Why? But that’s just not productive. We can’t do anything about it now. This is the hand we’ve been dealt by a broken world. Since Sophie was conceived there have been odds against her and she’s beaten them every single time. This particular hurdle is awful and hard and heartbreaking but, she’s too stubborn to give up so we won’t either. There is still a great chance that this chemo will keep her in remission and we will get to transplant. Then we will tackle the difficulties of transplant. Then we will go home and tackle the difficulties of her neurological damage and see where the Lord takes us on her road to recovery. It’s all very possible. We just have to get there. And the only way to get there is to pray our heads off every single day and lean on the faith that God is good in this and He is bigger than every obstacle in her way. 

Specific prayers for now:

1. Smooth transition to the rehab floor and adjusting to new therapies and schedules. 

2. That this specific chemo will keep Sophie in full and complete remission. 100% cancer free forever in Jesus’ name. 

3. That we would get our miracle healing in miraculously fast timing during therapy. Divine strength and return of motor function, talking, and swallowing. 

4. Pray specifically for Sophie to begin swallowing, coughing, and sitting up all on her own! She HAS to be in control of her head and airway for transplant to happen. 

5. Pray that the Lord will give all of us-the doctors, therapists, insurance people, family, and Jonathan and I the wisdom and peace to make the best decisions possible for Sophie. 

6. Pray for protection from all cold and flu season germs! No infections or sickness anywhere near us or Sophie! 


 I’ve gotten a TON of ‘How can I help?’ Messages. Right now, Sophie cannot physically play with toys and we can’t accept stuffed animals or anymore blankets due to infection risks. We also just don’t have space for big care packages. However, we so appreciate every offer! The fact that tens of thousands of strangers are wanting to love on us is truly humbling. 

Here are a few ways you can directly help us while we care for Sophie:

  • Call the Cook Children’s Gift Shop and have a gift card sent to us. These can be used in the gift shop for toiletries, odds and ends we need, and can also be used in the cafeteria! tel:682-885-6209
  • Call the Ronald McDonald House of Ft. Worth and ask to donate towards our weekly room and board donation. RMH asks for a suggested donation of $20 a night. Call: 817.870.4942 OR go to https://rmhfw.org/ and click on the red Donate tab. The where it says ‘other’ type in Skiles room 114 room donation. 
  • Click on our GoFundMe link if you’d like to contribute to gas and bills 
  • We also have a PayPal account set up for bills PayPal.me/ShelbySkiles 
  • There’s a Subway, Jimmy Johns, Starbucks, and Firehouse Subs all in walking distance of the hospital and RMH- anything like that can be sent to PO Box 2737 Athens, TX 75751
  • Finally, any donations made to a cancer organization, Toys for Tots, or Samaritan’s Purse in Sophie’s name would be an honor for us.