Friday, October 30, 2015

What If?

"Mommy, I don't think I can do it."
Do what, baby?
"Tomorrow...the poke..."
I got down on my knees and took her in my arms and told her she was going to do just fine. I reminded her that she went the day before for labs and they accessed her port without her even crying.
"But tomorrow they put me to sleep, and give me medicine, I just don't think I can do it again!"
You CAN do it, you'll be strong, just like yesterday, and daddy & I will be there with you.
"But what if I can't? ... how do you know I can do it?"
Mommy's know lots of things, baby. I know you'll be brave, because that's how God made you. And Daddy & I will be brave with you.

She was brave. She hates the procedure room, the bed, the masked people coming in to hurt her, the pain in her bones, the nausea, the yucky taste in her mouth.  She cried big brave tears. Warriors sometimes do.

Living up to our promise to be brave with her, is by far, the hardest thing we've ever been entrusted to do. We hold tight to God's promises,  and it's OK if we're sometimes less than brave in our own eyes, He's strong enough to carry us all.

 He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. Isaiah 40:11



Monday, October 26, 2015

Sweet Kisses

This past week has been a welcomed reprieve for our whole family.
Chloe is between treatment phases and has had 9 days off of chemo!
She has enjoyed every single minute of feeling well, and has packed as much fun into her confined little world as a 6 year old possibly can!
Princess S'mores

Playing school with her reading buddy (Brother Caden)
Painted a masterpiece!
Play date with Nani
Coming out of her room in ballet slippers as "Ms. Julie" (her dance instructor) informing the family that it was time for class!
Tap class was also included. Daddy mastered the "tap, shuffle, heel, toe" (We'll spare the pictures!)

Her BFF, Mia came for a sleep-over and they enlisted PoePoe (grandpa) to be the glitter tattoo artist
She left little notes to express her happy heart

 We are grateful for this week of sweet kisses from above. Our warrior princess goes back to the battle field on Wednesday. This round is intense, and will last for 2 months. Our trust is in The One who is mighty in battle, and faithful to save. 

Because your gracious love is better than life itself, my lips will praise you.  Psalm 63:3

Saturday, October 17, 2015

Highs and Lows

We were happy after Tuesday's treatment that Chloe felt well, and were cautiously optimistic that she would continue on the upward path. But by Thursday, she had a low grade fever, no energy, and no appetite. Our goal was to keep her hydrated and as comfortable as possible.  We can't give her anything to reduce a fever as it may mask an infection in her port, which is right next to her heart.
So, fever watch began.  If she hits 101.2 degrees, it's off to the ER.  Thankful to report, she stayed below that number for two days and on Friday night, her fever broke!

When Jillian picked the boys up from school on Friday, Mrs. Johnson gave her these sweet notes from Chloe's classmates.  Chloe was happy to receive them and read each one with a smile!

Right after Chloe's diagnosis, a doctor gave us this advice: "Take one day at a time" Really? That's the best he's got? But 4 months into this journey of highs and lows, it's been invaluable advice. Things can change in an instant. If we think about tomorrow, we're going there without the strength and grace that God promises for each new day. One day at a time, and today, she is fever free! She's playing with her brothers and singing silly songs to her beloved Dozer. One day at a time, and today is a good day.


Wednesday, October 14, 2015

And though she be but little, she is fierce.

Chloe woke up yesterday morning singing.  She felt great after the 9 days of sickness that followed her last treatment. She ate a good breakfast, played school with her stuffed animals, packed some snacks and toys for clinic and off we went.

She walked in like a little lion, but began to melt down when they started to access her port. She knows all too well how these treatments make her feel, and she wanted no part of it. They finally got the chemo going and she eventually calmed down, but our hearts were hurting. To watch our girl just being a kid all morning and later that same day,  have to hold her down to fill her little body with toxins is brutal. In the midst of our harsh reality, we feel the hundreds of prayers going up on our behalf, and we feel grateful.

We arrived home last night and she felt good! She opened a couple of sweet cards that came in the mail, put on a beautiful paw print necklace that our cousin Cherie sent and opened up a box of Get Well Fun! What a great way to end a tough afternoon!

This morning, she woke up singing!! There are no words for the happy in our hearts!
She ate breakfast, got to Face Time her class for the first time in days, and even have her
BBF (Best Big Friend) Rylie over to watch a movie and eat popcorn. The small things are so big!
She will go in on Monday for labs and an Echocardiogram to make sure her heart is staying strong. We're praying she will continue to feel well and mouth sores will not come back.  After that, we're looking forward to 2 weeks off before the next phase!

Sunday, October 11, 2015

Team Coco goes to CHOC Walk!

CHOC Walk 2015 at Disneyland - Team Chloe (Coco) represented well!
Chloe felt well enough to have her friend Brixton over today. She loved receiving her Coco banner and medal and hearing all about the Choc Walk. She wondered why she received a medal without doing anything...we explained that her bravery earned the gold!
Thank you to all who donated and walked to benefit CHOC!

Saturday, October 10, 2015

Sunny Saturday!



Our Princess Warrior woke up feeling better & ready to play! After two days of IV fluids and a slew of new toys (One new Calico Critter for every dose of meds, because this girl drives a hard bargain!) 


She will enjoy her weekend and go back on Monday for lab work. If all is well, she'll have her last treatment for this phase and a whole 2 weeks off before the next round! 


Thursday, October 8, 2015

The Flower that Blooms in Adversity...

Our sweet friend, and extraordinary photographer, Erin Tukua took our family pictures. Love this one!



“The flower that blooms in adversity 

is the rarest and most beautiful of all."

Our girl has had an excruciatingly hard week. The 3 chemos last Thursday made her nauseous. Even the smell of food made her sick. She broke out in a body rash and sores in her mouth as well as down her esophagus. She has not eaten more than a couple spoon fulls of frozen yogurt this week, and has lost 4 pounds. She was not happy about going to the doctors for two unscheduled appointments,  but she desperately needed IV fluids and a pain med. Her rash is better today, but the painful mouth sores are still there.
She is suppose to have her last treatment for this phase on Monday. Hopefully she'll be well enough for that to happen. Not that we want another week like this one, but we want to attack this beast called cancer!
Nellie, the therapy dog paid a little visit today. Made the long day a little happier.

Even in her pain, she is compassionate. She tenderly prayed for her great grandpa (Papa) when she learned of his shoulder replacement surgery on Tuesday, and then decided that he needed a "get well pumpkin" as he probably wouldn't be able to decorate one with only his left hand!

There's no easy way through this season, but there is grace. God’s perfect, and complete grace. It’s in Chloe’s smile - in spite of harsh treatments and side effects.  

It’s in the Scripture texts, the phone calls of encouragement, the selfless friends and family who help with our boys, it’s in the meals that compassionate, already busy people deliver to our door.  It’s in the cards and generous offers of help. And a  cute lemonade stand that sweet friends set up in Chloe’s name.  But most of all, it's in the prayers. Our life, as we knew it, has been painfully changed. But we will make it count. We believe Chloe will recover, and live to tell her grandchildren about her exciting adventures after she beat leukemia. And we will continue to trust in The One who gives strength and grace to the weak.  

Saturday, October 3, 2015

Finding our New Normal

Finding Our New Normal


I realize it's been a while since the last post. We are well into the routine of school for the boys, and all of the activities that go along with that. Chloe is a champ at clinic visits. Since our last post, she has endured 5 spinal taps, weekly port flushings and labs, as well as chemos too numerous to count. She doesn't even cry when she sits in the chair for treatment, she simply lets the nurse know that she likes to count to 3 before they do the "poke", and she wants to place the syringe of blood into the tube to send off to the lab. She's informed us that the clinics treasure chest of prizes needs a few more things for "big girls", we'll see what we can do to remedy that situation.
Grace School has been such a gift to our family. The love and support we have received is humbling and so appreciated. Chloe would have been in Mrs. Johnson's kindergarten class this year, along with 11 girls and no boys! The doctors say she may be able to go back to school in the Spring, but until that time, Mrs. Johnson has provided us with curriculum AND her class calls to Facetime 3 days a week during circle time! She hears a story, sings the Days of the Week song, recites the Pledge, joins in prayer, and hears any exciting news going on in the classroom. She looks forward to those calls!
This latest phase of treatment calls for increased chemo with each clinic, and clinic is every 10 days. The treatment on Thursday included a lumbar puncture with 1 chemo, and 2 other chemo's through her port. It wiped our girl out. She was pretty sick for 24 hours until we saw our little warrior begin to surface. Not much of an appetite yet, and not a lot of strength, but her smile is back and she's on the mend. 

Our new normal is anything but normal, but there's laughter in every day. God's grace and mercy are new every morning and we are sustained. 
We have friends, family and even some people that have never met us - that care, pray, contribute & feed. We are overwhelmed by all the love and support and we don't have the words to express our sincere appreciation. 


Albert Einstein once said "Play is the highest form of research" -
Maybe this team will find the cure!