Sept 2. Childhood Cancer is NOT rare.

Before they turn 20, about 1 in 285 children in the U.S. will have cancer. 285 children. Thats more than 1 child in most schools. in most grade levels.

Have you been touched by childhood cancer? Do you know a fighter? A survivor? An angel taken too soon?

Too many children are faced with this. EVERY 3 minutes a child is diagnosed with cancer somewhere in the world! Just in the time it’s taken me to type this post. On this second day of childhood cancer awareness month. 2 little loves were JUST diagnosed with cancer.

September 1, 2014 Pediatric Cancer Awareness Month

Today is September 1st. To most, this signifies the start of fall holidays, the beginning of a new school year, or the closing of a glorious summer.

To us, those who have been touched so deeply by childhood cancer, today signifies the beginning of a month to raise awareness, hope, funding, and ACTION for our children. This is a month to give these child warriors some recognition and urge the public to take notice.

1 year ago today I was lying in a hospital bed with my 23 month old daughter, watching her recover from yet ANOTHER round of high dose highly toxic chemo. She was shiny bald, sweet as ever, and the love of my life. I was massively pregnant, and determined to spend the next month taking care of my baby(ies)…. and spreading awareness about the disease that devastated my family. It was a great month for us. But there was always a thought in the back of my head….

Will Maci see another September? Will our family still be complete… in September 2014?

YES. she will. She’s here and she’s thriving. We are truly blessed.

But the devastating thing is….. there are SO MANY FAMILIES…. so many we know personally…. who canNOT say the same thing. Their child is gone. Their world will never be the same.

This is not right. This disease that is tearing families apart. Destroying futures. Killing our children. WE need to take action.

I ask you to start, with me, by painting Facebook gold. GOLD is the awareness color for pediatric cancer. I will be posting several (profile) pictures in support of pediatric cancer awareness, and would love you to TAKE ACTION with me in this small way…. <3

Happy September!!

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Happy Maci.

So originally this was going to be a post about statistics. Loss. Babies with cancer. Relapse. Death. The unfairness of it all.

There’s been some pretty awful things happening in our little infant leukemia world. Even in our local cancer world. More loss. Less triumph. Not the way things should be.  Things that have me unsettled and fearful.  Angry.

But I couldn’t get my words right. It didn’t feel right. It didn’t feel like this energy I have bottled up… was coming out in the way I wanted.

So Im scratching it.

For now.

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Let’s talk about happy.

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Let’s talk about Maci!

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She is now 2 1/2, and quite the young lady. She loves barbies and Frozen. Still takes such good care of her baby. She loves counting and singing. She loves the zoo and the baby giraffe. She still loves her fishies. She’s developed a recent obsession with parks and slides, and especially loves to point out every airplane overhead.

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She asks me “why?” 17.5 million times per day. She loves brushing her teeth. And her pink shoes. And popcorn. Her hair is jussssst getting long enough to put a tiny pink bow in it. Can I tell you how many people think I have it cut like this? I don’t have the heart to tell them the reason she rocks that perfect pixie. She quite often thinks she is 16 and is tries to talk-back when we tell her “no”. She holds her finger out to me and says, “hold on mama”… more than I care to admit.

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She loves gymnastics, especially the tumble track and the rings. She can hold on for 2 whole swings. She is so polite and listens so well to her teachers. Her shyness evaporates the instant we walk through those gym doors.  We’re thinking about swimming lessons this summer.

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She loves her sister. She helps feed her, makes her laugh, and tickles her belly. She encourages her to crawl. And brings her toys when she’s sitting. She tries to pick her up. And is getting scary close to actually doing it.

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She tells Daddy, Sawyer, and I she loves us all day long. With no provoking. Just because. She blows kisses. She hugs my leg while Im doing dishes. She gives the best bear hugs, just wraps her little legs and arms around us.

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She steals my heart at least 10 times a day.

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Our girl continues to do well…. and we feel so blessed. There is not a day…. not an hour…. that goes by that I am not thankful for her. I try so hard to soak every ounce of her into my memory.  Feel her presence and recognize how lucky we are to have her.

I know it can all change in the blink of an eye.

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Thats something I also never. forget.

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We have what we pray will be her 2nd to last spinal tomorrow morning.  Mama is worrying, as usual.  There is just too much heartache in this world we live in. It’s an impossibility not to worry during these moments.

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But your support means so much to us – brings our family so much strength.  Maybe, say an extra prayer tonight and tomorrow for our girl. For a smooth spinal. Quick recovery. Minimal sedation effects. And most importantly… clear results.

Thank you all,

So much love,

M, J, Maci moo, and Sawyer bean

 

Not a baby.

Did it again.

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We have gotten so busy with life…. blogging has taken a backseat. But, I miss it.  And a friend inspired me to jump back in.

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Lately, Maci has been happy. Happy to play. Happy to go for rides in the Dadda’s truck. Happy to go to ‘night night’. Happy to giggle with her sister.  Happy to rock with Momma at night. Happy to dance. To splash in puddles.  Er. Um. Take flying leaps, 2-feet at a time, and STOMP in puddles. Happy to eat cupcakes. Happy to wear yellow pajamas and pink tutus.

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Everything she does, she does it big.  She laughs.  BIG laughs. Huge belly giggles and the widest smiles.  She has taken her first-ever rides in those fun grocery carts at the store.  You know, the ones with the fancy ‘car’ attached? Momma disinfects and does her best to not let the germ ‘crazies’ ruin the fun.

In her own words, ‘Maci happy!’

 

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Her beautiful little mind works so fast. She is so creative and imaginative. Makes my heart happy.

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We have our days – don’t get me wrong. Steroid weeks are ROUGH. And there are still some seriously unpleasant chemo side effects we deal with on a daily basis.  Still have those fears buried deep – that resurface more frequently than I care to admit.  Still have our hearts broken time and time again with every relapse, every set back, every time the ugly ‘c’ rears it’s ugly head in this small childhood cancer world we now live in.

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But we have to have hope. Have to.

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And really. Really. Life is good. We are blessed.

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Our girl is talking up a storm.  It’s surreal to be listening to her tell me full blown stories. Sentences. Remembering things and people and games and songs from days or weeks ago.  Counting all on her own… fingers… cheerios… puzzle pieces.  Singing her ABC’s.  Singing everything! “Reading” (memorizing?) her favorite books to her little sister.  Her favorite part of the day is afternoon dance parties with daddy. And she is braver and stronger than I’ve ever seen her…. running around the park, climbing on couches, and jumping off everything. Even took a ride down a sledding hill!

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Baby, I love you!

“Momma. I not a baby. I Maci!”

 

Knife. in. my. heart. 

No. no sweet girl. You are not a baby anymore.

 

but. you’ll aways be my baby, baby

“ok momma! i love you more!”

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Her treatment continues to march on. Three weeks of home chemo. IV chemo monthly. 1 week of steroids. Clinic visits every other week for counts. REPEAT.

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Her blood counts have been low…. too low. Docs are changing some of her chemo doses…. and we are seeing them at the clinic weekly.  I have to keep repeating to myself that this is OK. They tell me it is OK.  Normal.  So it is.

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We try to live everyday happy.  Thankful. GIve her one more kiss. A few extra squeezes. Put the phone down and ignore that last text or the latest instagram picture. Focus on her and her sister. Enjoy these little people in front of us. Know every moment HOW VERY lucky we are.

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Momma has been running here and there…. trying to get ready for the Chicago half marathon in September!  We are getting a great team together… and have so much FUN planned! I get nervous every time I think about running that far…. but then try to think about how much that little girl has been through.  I can do this much.

Let me know if you’d like to join us! We’d love to have you!

Check out teamcureit.com to register with us!

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One request before we go. Please pray for a sweet little girl and her family from our clinic. Her cancer has relapsed… and she is now facing her second fight for her life. Our hearts are broken for her. But we know her strength. We’re all behind you Emily!

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Hope all is well with you.  We are so thankful for everyones support and love. And Maci sends big hugs and kisses your way!

xoxo

J, M, Maci moo, and Sawyer <3

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Will you run?

I, Maggie… Maci’s mommy, am running the 2014 Chicago Half Marathon on September 7, to raise money and AWARENESS for childhood cancer.

Will you JOIN me?

Last year was all about cancer. And our baby. And holding our life together. It was about watching our sweet 1-year-old’s hair fall out. Cuddling her as her oncologists put her to sleep. Watching toxic chemicals pump into her little body. Making the best of our life with her in the hospital week after week. Watching her in pain. Watching my family in fear.

Last year we met SO. MANY. OTHER. KIDS. fighting this same fight. Other families battling fiercely for their babies. And over the course of this last year, we had to say goodbye to TOO many.

Childhood cancer is ugly and ruthless and cruel. Last year I had to use every ounce of my strength to fight for my daughter. This year. I will continue my fight for my daughter. And I will begin my fight for our cause. The mass underfunding of childhood cancer research is utterly unacceptable. My baby, and so many other babies, deserve MORE. They deserve LIFE. They deserve a CURE.

This is why I will run.

And this is why I will raise money for Cure It. To fund the research that WILL cure our babies. And to support the families that fight every day.

Will you join me?

 

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Christmas at home.

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Well. We did it.  Christmas at home. I honestly went to bed Christmas eve saying a little prayer. Please let us wake up at home. Please let my baby open her gifts here. In her house. Please let her experience this.

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The giggles. The magic. The excitement.

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After weeks of health… I still had that fear.  That fear that we would wake up  in the middle of the night to coughing. Fever. Something.

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But. It happened.  Boy did it happen.

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Maci had a blast.  She took her time… peeled off every sticker and every bow. Especially enjoyed  putting those stickers on her little sister.

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She wanted to take each toy “out!” after opening it.  Really didn’t get the concept of open> set aside>open more.  Just wanted to PLAY!

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Se savored it…. loved every minute.  Every second.

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Maci talked all about “shasha”… aka Santa…. and was REALLY excited to eat his cookie leftovers.

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Overall, it was a great day.  We loved watching our girls.  Happy. Healthy. All of us, together.

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But I’d be lying if I said stupid cancer never crept into my mind.  Giving her chemo in the middle of the night Christmas eve.  Watching her open gifts and praying I get to do this over and over for at least another 20+ years.  Talking about next year… and wondering where our life will be then.

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This is what it does… seeps into every happy moment… and steals just a little bit.  I try so hard not to let it… but I know I’ll never fully win that battle.  This is our life, and ignoring it is not realistic. But I am learning to let it go. Not dwell. Enjoy every moment, and not think too much about the what ifs.

Im working on it. Always.

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Other than Christmas fun… we have been enjoying some early season snow, and snuggling in the house with our beautiful girls.  This cold/RSV/flu season is still terrifying to  us… so we are doing lots of things around the house.

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Maci is doing well with her home chemo, and we are about 1 1/2 months into maintenance. Her counts have been bouncing around a bit… and we have come close to the neutropenic line several times.  The once a month steroids are tough… but we’ve been lucky to have family in town to help most of the time.  Things get dicey with roid-ing Maci + the littlest sister and only 1 Momma.

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We continue to chug along….

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We just want to thank you all… once again… for all of your support and love over the last year.  It’s been a tough one… and we couldn’t have made it through without you.

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We are looking forward to big things in 2014. LOTS on the horizon.

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And we wanted to say that while we feel so blessed to have had this holiday with our loves….  Our hearts were broken for a few friends… new and old.  A fellow infant leukemia warrior… beat his cancer…. but passed away recently due to the toxic treatment these babies receive.

And a close friends father… a gentle and kind man I wish I knew better.  His daughter is one of the BEST human beings I know.  These families.. and so many others experiencing loss and heartache right now… remain in our thoughts and prayers. <3

So much love,
J, M, m, & s

About time.

Wow.

It’s been 2 months since our last post.  So much has happened…. it seems silly to try to recount every detail.

There’s been happiness.  Joy. There’s been worry. There’s been heartache. There’s been loss.  There’s been progress.  There’s been chaos.  There’s been some normalcy.

Our new sweet girl, Sawyer Anne, has brought so much fresh love and excitement into our home.  It’s like she was always meant to be here with us… she belongs so perfectly.  We just had to wait patiently.

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Maci adores every bit of Sawyer…. and Sawyer of Maci.  They stare at each other…. smiling.  Their eyes locked….Sawyer coos and just beams with happiness, and Maci with the biggest grin… so gently touches Sawyer’s cheeks and nose.  Kisses her ears, and the side of her head.

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“Momma…. baby!  Ay wove you baby!”

I have never seen such pure sweet love. I couldn’t be more happy, or feel more blessed.

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In true Villarreal style…. Sawyer arrived just as Maci finished her last high dose chemo.  Less than 24 hours later to be exact.  We brought Sawyer home from the hospital just as Maci’s counts started to plummet.  We had just gotten settled in… 5 days later…. when Maci spiked that fever.

We were blasted into 2 weeks of pure hell.

I knew in my gut that morning.  It was that same sick feeling I had the night before Maci was diagnosed.  She was just so hot. I knew this fever was something more. Not just neutropenia.  Not just a cold. I just knew we were heading into a fight.

Her blood cultures came back negative… than 20 minutes later turned positive.  Psuedomonas bacteria.  Blood infection.  All those posts I did in September about life threatening side effects of treatment?  This is one of them.

It likely started from within Maci’s own body.  A bacteria that can exist in any of our bodies… but that a normal immune system can fight off when it gets in places it shouldn’t.  It’s serious.  It’s life threatening.

Because Maci had ZERO immune system…. because of the chemo she had received….It crossed into her blood stream… and became a serious problem.

Maci was absolutely miserable.  In more pain than I had ever seen her in.  THe most gentle touch hurt her.  A tiny movement. Hurt. Her whole body.  She just cried and whimpered for 3 days straight.

Maci’s oncologist was hopeful that we had caught it early…. Maci was awake, alert, and fighting back.  Fighting residents. Fighting nurses. Fighting everyone.  This was a good sign. She had fevers… but her other vitals remained stable.  Our biggest concern was sepsis.

On the 2nd day… a new problem arose.  A more localized infection.  A whole new set of worries.  This infection was severe…. it killed the tissue it had settled in. Necrotic. Dead tissue.  More worries… this can spread… quickly.

Again. Life threatnening.

We were lucky… our Maci is a true fighter.  Our best case scenario became our reality.  With loads of antibiotics, narcotic pain meds (THAT was interesting……), wound care, and lots of love…. our girl healed.

She is so. strong.

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First time out of bed…. couldn’t even sit up on her own.

Nurse Maci

Nurse Maci

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Walking her halls...

Walking her halls…

After her infection was under control… the docs gave her permission to go outside… to visit her little sister and get some fresh air….IMG_6165 IMG_2989 IMG_2942 IMG_2945 IMG_2892 IMG_2891

 

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Physically, Maci did great… we were discharged with home health for IV antibiotics, and started her next round of chemo just a week late.  Her counts bounced back beautifully, and before we knew it….she was back to eating, running, giggling, and chatting like crazy. It was truly amazing to see her little body go to hell and back in such a short amount of time.  At her worst, she could not sit up on her own…. but not more than a week later she was circling the floor and busting out for daily trips outside to see her sister.  Amazing girl.

Emotionally, I think this admission took more of a toll.  In the month or 2 after discharge, we  have dealt with sleep issues, social anxiety, and a complete distrust and fear of anyone and everyone outside of her comfort zone.  Loud noises. beeping. big crowds. strangers. sirens. fast movements. all terrify her now. She craves routine more than ever, and we are trying our best to give her as much consistency, security, and love as we possibly can.

She is improving.  We’re getting there.

Otherwise…. Our Maci moo is kicking butt.  She is now in the ‘maintenance’ phase of her treatment…. less intense, more home chemo, no more scheduled admissions.  Her immune system is still compromised…. we still have to be very careful…. especially in this cold and flu season…. but we can breathe just a tiny bit easier.

Maci is so full of life.

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Her hair is coming back. She is jumping off things, onto things, just for fun.  She loves to sing…. I catch her singing along to music all the time.  She can count to 10!  She loves school buses, and is totally fascinated by the kids getting on and off…. we talk about school a lot.  She still loves her baby… and now has a whole new set of care taking activities.  Nursing her baby. Burping her baby.  Swaddling her baby. And putting her baby down for naps…. in Sawyer’s swing or Sawyer’s crib or Sawyer’s bassinet. She loves The Little Mermaid… and giggles her heart out dancing with momma to ‘under the sea’.  Errands are one of her favorite activities…. I think because she gets to eat her goldfishies in the car. She loves her sister so much… and is such a great helper.

So… other than loving this simpler life, enjoying our days at home as a family of four, and giving as many hugs and kisses as possible… we’ve had a few highlights the last few months…

1. Maci went trick-or-treating for the second time…. and actually enjoyed it!  She had so much fun walking hand in hand with daddy…. and was so thrilled to be receiving these little ‘gifts’ from each house.  We only did a few houses… but our little Pink Lady had a blast with her T-Bird… her BFF Aidan!

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2. We got to meet a wonderful young lady.  Marissa is a senior in high school.  She started her own pediatric cancer foundation.  Several years ago.  She gets to know these beautiful fighters, and fills Hope Bins for them… simply to bring joy and happiness.  This is not for service hours. Not for recognition.  She doesn’t fundraise. Doesn’t reach out for help.  She’s done this for dozens of children over the years…. all over the county. You can see the love in her eyes, and feel the joy it brings.  Oh yea.  How does she fund this amazing mission?  She babysits.  Yep.  Uses the money she receives from WORKING…. and puts it completely toward making these little warriors smile.  We were so lucky to meet Marissa, so lucky to get to spend an afternoon with her.  She is such a special person…. I know she is GOING places.  We look forward to more fun with her! And Maci just loved her toys & PJs!

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3. We spent our first holiday at HOME in over a year!  Thanksgiving was wonderfully homey and peaceful.  Maci ran around the entire day….  giggling, screeching with joy, and loving all the attention she was getting from family.

It wasn’t quite complete…. we missed a few from our family…. another holiday in the hospital for some loved ones.  But thankfully, all is ok now.

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We also had Maci’s GREAT grandparents in town from Florida… and she loved spending time with them.  Learning the ropes as an Italian!  Grandpa taught her to roll gnocchi!

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4. We cut down our Christmas tree and decorated our home for the holidays!  It was such a fun few days… and John is now calling himself Clarke. :)  Maci loves all of the decorations and lights… but is very unsure about Santa and the little elf standing in front of our house…

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5. These days we only go to the clinic every other week. Dr. Canner about gave me a heart attack when he told us not to come back for 3 weeks.  Its strange….I almost miss THAT routine.  It was comforting always knowing her counts. Reassuring to know its OK to take her out today.  But I know this is the first step to ‘cutting the cord’.  One day, they will tell us not to come back for months. Sounds terrifying and wonderful at the same time.

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My goal is not to let this much time pass before our next update.  Life is a bit more hectic with 2 little ones… and Momma doesn’t get much time to herself.  But this is such a wonderful place to put our favorite memories, document our girl’s progress, and share the love our family has…..

Hope everyone is having an amazing holiday season.  So much love to you all.

 

The Villarreals