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.
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.
“Momma…. baby! Ay wove you baby!”
I have never seen such pure sweet love. I couldn’t be more happy, or feel more blessed.
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.
First time out of bed…. couldn’t even sit up on her own.
Nurse Maci
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….
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.
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!
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!
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.
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!
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…
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.
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
