Saturday, August 20, 2016

Have Courage and be Kind

In the tears, in the waiting, in the asking and believing and sometimes even faltering, He is our hope. His strength became our strength when being strong seemed a thing of the past.  
And in the waiting, through the changes, there is also grace. It’s renewed with every sunrise. It’s a brand new opportunity to love and learn, to be grateful for the smallest of joys, and to share kindness with even one person. We have been the recipients of overwhelming kindness and a truckload of thanks wouldn’t begin to express our gratitude. But just know, that in the tears, and the waiting, and the hoping and believing, and sometimes even faltering, you have been the hands and heart of God in our lives, reaching out in our brokenness, walking with us in our pain, rejoicing in the victories, and believing with us for complete healing.
We will never, ever, for one minute, believe that any kindness is too small. Each act of kindness has brought strength and encouragement to our family, and we are eternally grateful and forever changed.

Chloe has been in treatment now for 14 months. She's doing really well! February ended the 8 months of intensive treatment and she is now in maintenance, which includes daily chemo pills and a five day steroid pulse each month. Every 80 days brings a lumbar puncture with chemo infusion, and then there's the clinic visits for blood work. As you can see, her hair is growing back! Her once straight, blond hair is now darker, thicker, and has some curl. Although she's brave, and didn't complain about her beautiful bald head, she's pretty excited to have hair. She was able to attend school for about a month before summer vacation started, and was thrilled to be able to take part in kindergarten graduation with her class. 

Wednesday, November 18, 2015

In the Heat of the Battle

Battling cancer on a daily basis is exhausting mentally, physically, emotionally & spiritually. It's a full time job dealing with the meds, the endless insurance claims, the clinic visits, trying to manage the side effects of medications, while hoping and praying that the treatments are doing what they're suppose to do without the long term side effects that can come along with them. In the center of this insane battle, sits three little kids. Their lives have been twisted and shaken, and they've been schooled in things no child should ever have to see. And yet, they shine! They find joy all around them, they eagerly anticipate each new day and all it has to offer. They play, they learn, they hope, and they dream. We are constantly inspired and humbled by these little loves.
Christmas 2014
Chloe never knows from one day to the next, how much energy she'll have. Whether water will taste "disgusting" or the smell of food, Dozer, or her brothers breath will make her nauseous. Yet, she chooses to laugh, she makes up elaborate stories, and when inspiration strikes, draws whimsical pictures. She started giggling after she drew this picture and when I asked what she was laughing about, replied "I guess I have a case of the silly bugs" LOVE this girl!

In square one, you'll see a duck modeling a Tutu & a hat with a lovely pink flower.
Square two is a Blue Jay wearing a black leather vest and pink high heels. Square three needs no explanation, we've all seen a super hero pig :-) Lastly, a stylish lady bug with a matching umbrella.
She is an encourager, a wise little soul, and though she is the youngest, she has always been the leader of the pack. It's the unspoken law that Chloe picks the first piece of bacon off the platter, it is Queenie who decides which Paw Patrol dog or Super hero each will play with, and the scenario of the adventure. She orchestrates little surprises and celebrations, and the boys usually go along with her orders plans, even when they include a dance number from Descendants!

Our boys have always protected & loved her, but there is a heightened sensitivity towards her since her diagnosis. When we explained her illness to them when she was hospitalized in June, Caden asked if she would lose her hair like the other children on her floor. We told him yes, and he began to cry and shake his head no.  He said he didn't want her to be sad, and losing her hair would make her really sad. They all know that her hair will grow back after treatment, and they haven't mentioned it since. (With the exception of Chloe, who says she always has hair in her dreams)

When Chloe was diagnosed, our entire family was diagnosed. The changes for our boys, begin at the front door, when after school, the shoes & shirts come off and the hand sanitizer goes on. Friends can't come to play like before, family outings are rare and limited. But they don't complain. When we ask them about the best and worst part of their day, they quickly respond with the good and often have to think about the worst. 

How grateful we are, that in the heat of this battle, our children's hearts are kept and secure. We pray that this challenging season will make us all more compassionate, and purposeful human beings. We definitely appreciate the good days, and even the not so good days have good moments, as long as we're looking for them. The Lord is our strength and shield, and we thank Him for guarding the tender hearts of our children.
A friend loves at all times, and a brother is there for times of trouble. Proverbs 17:17

"Every day you either see a scar or courage. Where you dwell will define your struggle." - Dodinsky

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!