Time Goes On

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

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

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

But time has gone on. As it does.

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

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

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

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

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

I miss being around people who truly got it.

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

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

One year, 9 months, and 6 days.

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

Because ultimately these reminders remind me of my girl.

My brave brave girl.

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

The day time stood still…

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

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

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

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

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

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

It was raining.

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

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

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

Then.

3:00. Time stopped.

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

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

She was going to die.

How long? Was our next question.

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

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

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

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

And that’s what I did.

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

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

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

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

Sophie The Brave indeed

Courage is defined as strength in the face of pain or grief so it’s entirely appropriate that Beads of Courage are given to children going through medical suffering.

In children’s hospitals across the nation, children get a bead for each different test, surgery, scan, procedure, medication, or hardship they face during their treatments. There are programs for Childhood Cancer and blood disorders, NICU, cardiac conditions, and chronic diseases.

When a child is older, the incredible Child Life Specialists are able to use these beads to explain what is happening to them. They bring their name letters in and let the child start their necklace. It’s an incredible way for kids to have a visual and tactile way to process what is happening to them.

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For younger children, like Sophie, it’s a way for moms, like me, to keep track of what is happening. I am by nature an organized person so these beads were so therapeutic to me. Everyday I wrote down what Sophie went through, charter each thing in her head journal, and then requested the beads from our nurses every 21 days when the journal was full. Then I’d sit-usually late at night while my baby slept-and I spread out her ever growing necklace. I’d dump out the bag of 3 weeks worth of beads and start sorting. I put each color bead in its own pile and then made patterns. Yellow, black, white, rainbow, blue, bumpy…repeat. Green, pink, red, star…repeat. And on and on I’d go until I ran out of beads. Then I’d tie the necklace back together, walk over to Sophie’s bed, and hang it up on her IV pole….A few feet longer than it had been the day before.

I did it every 3 weeks for 7 and a half months. It helped me process what was happening. It told her story. I wanted every single thing she went through documented. It was her testimony. The physical proof of how brave and incredible she was being. I also wanted it to be able to show her one day when she was big enough to understand. These beads were so much more than a necklace.

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In December when we found out Sophie was terminal and we discontinued treatment, I almost stopped keeping track of her beads. I thought, what’s the point? She was dying. I would never be able to show her the beads. I’d never get to sit and tell her what each one meant and how she had overcome all of it. I’d never get the victory picture of her healed and whole, covered in thousands of beads. What was the point?

My mama, Sophie’s Mammy, helped me see that there was still a point. We didn’t know how long she had left but, however long it was…she still was earning those beads. She was still going through one of the hardest things a child could ever go through. Her story still deserved to documented. She knew I’d want that story-the complete story. She knew ‘what’s the point’ was my crushing grief talking.

So for 13 more days, I kept writing down each bead and giving the journals to our nurses. One precious nurse brought them in one night with ‘God is Bigger’ beads for me to add to her necklace.

And on that final day, January 4, 2018, Child life searched the entire hospital for one bead. The last bead. The butterfly.

 

Sophie was sick for 232 days. She has 1,344 beads. Her necklace weighs 3.5 pounds and is 45 feet long when stretched out. She had:

10-heart shaped-PICU

200-yellow-nights spent inpatient

26-red-blood or platelet infusions

116-Black-pokes with needles

181-white-chemo doses

137-rainbow-PT, OT, Respiratory, Speech

21-Acts of Courage

130-bumpy-days spent unable to walk…stuck in her bed

56-light green-X-ray, CT, PET, MRI, ultrasound

81-lime green-days with fever or neutropenia (no immune system)

28-Tortoise-spinal Tap or wound care visit

10-beige-Bone marrow aspiration

3-Orange-PICC placement & removal & port placement

13-magenta-ER visit or ambulance ride

76-purple-antibiotic infusions

35-times under anesthesia

20-aqua-tube placements (NG, G-Tube, Chest Tube, Foley Catheter)

52- grey-dressing changes

5-smiley face-hair loss/growth

5-Star-surgical procedures

125-light blue-mouth care

6-blue-clinic visits

3 fish- an upstream battle

1 Butterfly- flying free

And she earned every…single…one.

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Sophie’s beads tell her story. They tell of her bravery. They tell the excruciating journey or childhood cancer. And while I can’t ever sit with her and tell her about it…I CAN tell the world. I can tell anyone that will listen because, it’s her story, and it matters more than almost anything else in my life.

My Brave baby, I’m so proud to be your mama.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #BeadsofCourage #ChildhoodCancerAwareness #MoreThan4 #GoGold

The world doesn’t care that I’m grieving.

I’ve learned something in the last few days on our trip to Seattle for my sister’s wedding…the world doesn’t care that I’m grieving. My world felt like it stopped on January 4, 2018 when Sophie took her last breath but, it didn’t. Everything else outside of our little corner room on D6 at Children’s Health kept going. The clocks kept ticking, the hospital kept buzzing with activity, traffic still backed up, the sun still set, I kept breathing…and a whole host of other things kept going even though my body was stuck at 2:11 PM.

In the months following her death, I didn’t put myself into situations where i was around strangers much. I stayed in a bubble of people that know and care about me and Sophie. The world still moved on but, my people kept the bulk of change from slapping me in the face. Now, a few more months later, I’ve obviously re-entered the world a bit and am reminded daily that the world doesn’t care that my daughter died. My people care…but now that I’ve ventured outside of my comfort bubble of loved ones…the world is still big, it’s still turning, and it didn’t stop in January.

That became painfully obvious during our travels this week.

Grief does weird things to your brain. I now have, what I call ‘grief induced social anxiety’…I’m not a doctor but, I never had social anxiety or got overwhelmed easily before Sophie got sick. It now hits both Jonathan and myself pretty heavily sometimes…not all the time but, when it hits it’s pretty debilitating. Even with Zoloft on board.

In stressful situations, I get really overwhelmed all of a sudden, my heart pounds, I get really hot, tears tend to start leaking from my eyeballs and it leads to a full on sobfest.

And the world could care less.

On Friday, traffic didn’t care that we had a flight to catch for my sister’s wedding in Seattle. The 6 wrecks we passed had no clue that it had already been a hard week for me and neither did the construction crews that stopped us for almost an hour. The traffic in Seattle and the ferry schedules didn’t care that I was 200% overwhelmed by the time we got in our rent car at 7pm

Seattle time. None of it cared that I was on the verge of a full on panic meltdown. The rain and wet roads didn’t care that I was in tears because I was missing my sister’s rehearsal dinner on top of everything else. The world doesn’t care that I get anxious being away from home because I’m away from the cemetery…away from my girl. Then on our way home, yesterday, Hurricane Michael didn’t care that I was so ready to be away from large crowds and in my home on the couch under blankets. Airport delays didn’t care that the emotional hangover was setting in and I just needed to decompress at home for a bit.

Grief multiplies stress.

Stress multiplies exhaustion.

Exhaustion multiplies grief…..and on it goes, until it passes.

And the world doesn’t care but, Jesus does.

He knows the anxiety.

He knows the stress.

He knows the overwhelmed sense of panic.

He knows the tears.

He knows the grief behind it all.

He knows your heart.

He knows you.

He is the Shepherd that leaves the 99 sheep to find the one that’s lost.

And you know what? It’s already redeemed. Because we decided that driving home from Dallas at 1AM wasn’t safe so we got a hotel. Now, today, after 10 hours of sleep…we are going to visit the hospital and our sweet friend Addie. So yeah, Friday and yesterday’s travels were awful. But we had precious time with my family. My sister married her person in a gorgeous ceremony and we got to take in some incredible scenery.

We are thankful to be safely back in Texas. We are thankful to get to love on our nurses and friends.

So I’m calling that a win.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #AddiesArmy #WorldMentalHealthDay #1in5

Memories of Miracles: 9 months

Everything right now is ‘one year ago’. It’s pretty brutal. And today is no different.

One year ago, Sophie was declared cancer free. She was still extremely disabled and we were facing the terrifying stem cell transplant process but, she was cancer free. I still had such hope and purpose! I was adamant that if we could just beat the cancer then I would Be rehab mom for as long as it took. I wasn’t unrealistic…I knew we had a very, very long road ahead of us.

But, here we are one year later, and she’s been gone for 9 months. 39 weeks. She was born at 38 weeks. So, she’s been gone now longer than I was pregnant with her. And it sucks so much.

Now, one year later, we know that it was an absolute miracle that she went into remission.

You see, we had genetic testing done on Sophie’s tumor and on Jonathan and myself after she died. And we found out that Sophie’s Lymphoma was not hereditary. It wasn’t ‘our fault’. She just had some rogue cells get through her body’s cancer filter (very scientific terms). She also had a genetic tumor mutation that we never could’ve predicted or known about without this autopsy. Sophie had a PTEN gene mutation…there’s a big long definition for that but basically…her body genetically was unable to respond to chemo. Chemo never would’ve saved her.

So, now do you see why remission at all was a miracle?

Even the fact that she responded to chemo from May-August and was her sassy and Brave self was such a miracle. We very seriously, should have lost her in May….or August…but the Lord gave us such precious time caring for her and witnessing her incredible strength.

He has shown me that that little miracle of remission was for a purpose. Because Sophie went into remission, we were sent to Cook’s in Ft. Worth to get ready for transplant. At the time I was so upset about it because that meant leaving our beloved nurses and doctors at Children’s.

But God.

At Cook’s, we were placed on the neurological rehab floor instead of the cancer floor. Soph’s immune system was stable enough that she wasn’t at risk for infection and all of her doctors thought being on the rehab floor for intensive therapy was the best place for her. That floor was less restrictive than the cancer floor. Sophie didn’t have to keep her chest port accessed so I got to have her on my chest all day, everyday. We also could sign her out of the floor and take her on walks. Those were the best parts of our days. We bundled her up in her supportive stroller and explored the gorgeous grounds of Cook’s. Sophie’s favorite place was outside and at Cook’s we got to take her out 2 or 3 times a day. It was also November and December so Christmas decorations were everywhere and Cook’s does Christmas BIG! Getting to take Sophie out in the evenings to see the lights was another highlight of our days.

While we were there, Sophie ‘felt’ better. She was still disabled but, she wasn’t throwing up constantly or in a lot of nerve pain. We had her feedings under control and her medication combinations just right. She was making small progresses in therapy and smiling and laughing. We read books and sang songs, took sweet couch naps, walked laps on the 2nd floor and visited the chapel.

Those 6 weeks were hard because we were in such a limbo of uncertainty. But they were also such a blessing. Knowing what I know now, that her tiny body was genetically unable to beat her cancer…those 6 weeks of remission were such a gift from Jesus. The cuddles and time together….just precious. I will cherish that time forever. Each little memory…every miracle.

And today, we are one month closer to forever.

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

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.