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

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

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

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.

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!

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!

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! 

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."

― Walt Disney Company, Mulan

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.  

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!

The meeting

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Chloe and our family have made it through induction! It was rough but it's over.  I am so glad that the month of steroids is done. Those steroids are gnarly. We are so glad to see Chloe getting back to her normal self.  She is playing, talking, and just much happier all around.  Her appetite has started to subside and hopefully her bloating will go away with it. Chloe's hair has gotten very thin from the chemo. The shedding seems to have slowed for now but the doctors say she will probably lose more.

We had a meeting with her doctors where they reviewed her test results and her upcoming treatments.  All of the factors that they take into account for her treatment were great.  They said she is in the elite of the leukemia  patients.  Although they put her in "low risk" her treatment will be the same as a standard risk patient.  We were hoping that she may get a lighter treatment being in "low risk" but those clinical trials have ended. This could be a blessing though, because they know that this treatment is proven to have a high percentage rate of success. There could have been a chance that with a lighter treatment that it may not be as effective, I suppose. I know that God is in control and leave it in His hands. We are so thankful that she is in remission. 

Please continue to lift Chloe and our family in your prayers as we go through her treatment.  She will be having a lumbar puncture this morning and today we start the next phase of the treatment plan. Thanks for your continued prayers and support, it has been so helpful through Chloe's battle with cancer. 

Thank you, 

Andrew (Chloe's Daddy)

Answered prayer

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These last few days have been an emotional roller coaster. I'm gunna cut right to the good news though. Today the doctors told us that Chloe's MRD results came back and ALL the CANCER is GONE! She is in remission and they also have put her in the low risk category leukemia. This is a HUGE answer to prayer. That is one of the main things we have been praying for since we found out she has leukemia. God is so great and does hear and answer our prayers. They told us that very few patients fall into the low risk category.

Chloe and our family still have a long and crazy road ahead of us but the 2 year treatment should be a little easier on her with a better prognosis than it would if she were in the  high risk category.  We cannot express how thankful we are to hear this great news. I hope that through this hard time in our lives that God gets all the glory and His power is displayed through the healing of Chloe and His peace in our lives.

Thank you God! and thank you for all your prayers.

Andrew ( Chloe's Daddy )

A early trip to the ER

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Today started out early with a trip to the ER. I think we left the house around 4am. Chloe was running a fever and with the port in her body and the increased chance of infection any fever is a trip to the hospital. This was kind of a shock because just the day before was probably the best day she has had in a long time. Her attitude was closer to normal and she was having fun playing with her brothers. It made us so happy the see her playing dress up and swinging on her new gorilla gym (As seen on TV).   Anyway, they ended up admitting her and we will probably be here for a few days. It really puts our life on hold every time we come here.  Chloe is doing ok, but she has still has a fever, cough and some congestion. They said she will have to stay until 48hrs after the fever breaks.  As of now they think it could be some kind of virus but we will probably know more soon.
Please pray she gets better and we can go home as soon as it is safe for Chloe.  We are finding out soon ( by Monday ) the results of her marrow biopsy, and we pray that the cancer is gone.
Thank you for all you have done for us, and for keeping us in your prayers.
Thank you,
Andrew ( Chloe's Daddy )

2am in the hospital - just woke up to her covered in IV fluid and blood. Her IV hose came apart in her sleep. It was very traumatic having to hold her down to redo her access to the port. She was very upset as you can imagine.  Please pray that she doesn't get a infection from having a open IV

End of induction

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This week has been pretty tough on our family. It's been stressful for us, life as we knew it is completely changed.  Chloe hardly leaves the house and doesn't let Jillian leave her side. The steroids have really done a number on our girl. Physically she has a huge appetite and her tummy bothers her. Most days she has very low energy and just wants to sit around, hardly laughs, and barely talks. It makes me so sad seeing her like this. I just want my daughter back to her normal joyful and fun loving self.  Within the next couple days she will be off the steroids and hopefully the side effects will fade away. I can't wait to hear her giggles and to see her smiling more often!

Today the O.C. Register came and will be doing a piece on our family in the next week or so.  We also had a birthday party for our doggy, Dozer. We try to think of fun things that she can do at the house. I think today was her best day in a while. She was in a good mood and really enjoyed the dog party.

Please pray for her tomorrow, she will be having her next bone marrow biopsy. It's been a month, and the results will determine the remainder of her treatment. We pray that the chemo has been effective  and has completely killed off the cancer. They have to find less than .01% cancer cells, any more than that and it automatically puts her into "high risk". I know that God can heal anything. It is no harder for Him to heal a simple flu than it is low or high risk cancer.  We are praying for the best results and the easiest treatment for her. I am very exited for her to be off of the steroids. Pray for her safety during the procedure, good results, and a complete healing.  A family from Chloe's school has made some awesome Pray for Chloe Rott bracelets that they are selling for her. Thank you for all the creative ways that you all have helped us, and for all your prayers and encouragement!

Thank you,
Andrew ( Chloe's daddy )

Day 19

Chloe has been hanging tough through all she has going on. A few days ago she got a shorter hair cut. But today was the first day that we noticed her hair starting to fall out. It breaks my heart to think that she will be bald. I do not care how she looks. I just don't want her to feel self conscious about it. I want her to always feel like the beautiful girl that she is.

She has been doing a great job with taking her medicines. It's become a normal part of her day now and we really don't need to bribe her anymore. Her brothers have been helping by taking there meds too ( mango juice in a syringe ). We crush up her pills the same way and give them to her in a little naked juice.

We are always praying for healing. We pray that she will be in remission at the 29 day check! Our whole family needs strength and comfort through this journey. Thank you so much for all your prayers and help!  We have been so amazed by everyone.

Thank you,
Andrew ( Chloe's Daddy )

Retroliberty

https://m.youtube.com/watch?v=CR-xydV_As0

The link above is a YouTube video that our besty Aaron at RetroLiberty put up on his channel.  If you are following Chloe's story and my posts I'm sure you'll be touched by it.   Thanks

First trip to OPI

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    Today was our first day of OPI. That's the outpatient oncology center at CHOC.  As you can imagine Chloe was terrified to go back to the hospital. It was not a easy task to get her there. Trying to convince a little girl hyped up on steroids to go somewhere she hates was... Interesting      I think I got bit in the beard at one point. Haha. Seems funny now but not at the time.  We had to apply numbing cream on our way to OPI so once we got there they can access her port ( like a IV connection point)  without it hurting her.  She did Soooo good once we were there! She did not cry at all. She sat on my lap and ate crackers as they took blood samples and gave her the next round of chemo.  I'm so thankful that it went so smooth today. 

   At home it has been a difficult change of life on everyone. I can tell that Caden is having a hard time with everything.  He is worried about Chloe and I'm sure doesn't like the changes we've had to make.  Chloe has been having the classic side effects of the steroids.  She has been very moody and eats everything in sight.  She has put on a few lbs so far, which should come off when she is off the roids.  Jillian has started using oils in the air that are supposed to help. She has talked to other parents that have gone through the similar situations and swear that the oils really helped their kids with all the side effects of these harsh drugs.

   Please continue to keep us in your prayers.  Thanks for your prayers and support.  Our family, friends and even complete strangers have been so generous and reached out to us in so many ways   We are so greatful for everything 

Thank you and God bless,

Andrew (Chloe's Daddy) 

Melted away !

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     It's been so nice being home ! I've never appreciated sleeping in my own bed so much. I think Chloe would agree too. The bumps that were on the side of her face have already melted away! It is seriously so awesome! The doctors said they would shrink away but we are just amazed how fast they disappeared. We are hoping that the cancer we can't see it going away too!  She has been eating Soooo much! I guess the steroids are kicking in.  She will eat all evening long if we let her.  Jillian and I just look at each other in amazement as she downs food like never before. Chloe is usually a light eater.  Chloe and Jillian are inseparable right now. It reminds us of when you first bring a new born home and you are so worried that they will get sick and if you put them down the baby will get all fussy.  Chloe is doing surprisingly well and I think that it is a answer to the many prayers. We are comforted knowing that so many are keeping us in there prayers.  Thank you for all your prayers and the creative ways you have helped and supported our family!

Thank you,
Andrew ( Chloe's Daddy )

There's no place like home

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    Today could not have come any sooner. We finally got to come home!!! Chloe was so excited to get back home. She could not wait to get unhooked from her IV , get out of the hospital and go see her doggy Dozer. I can't wait to get a good night sleep without getting woke up all night from nurses coming in and checking vitals. I also will not miss the crying and coughing that we heard all night long from the rooms next to us. If you have to be in the hospital CHOC is a good place to be, But I will be happy if we don't have to stay again. I am also thankful to live in a place that has great facilities that can treat illnesses like this!
      The doctors said that Chloe's levels are steady and should be ok until her next appointment on Tuesday. At that time they will recheck her levels again and give her the next round of chemo. Thankfully she had a good day today, with minimal pain. Maybe it helped knowing we were going home.
       We are praying that she doesn't get any colds or infections. The house has been super cleaned and we have implemented some serious hand washing and sanitizing routines. For example; shoes come off at the front door, and we keep a bottle right by the door so you have to sanitize your hands right when you come in.  We enjoyed our meal from the meal train tonight ! It was such a blessing when we have so much going on. Thanks for all the prayers and support! We are blown away by your kindness and generosity. Please pray for Chloe and our family as we enter this new part of our lives as we battle these cancer cells.

Thank you,
Andrew ( Chloe's Daddy )

Genetics results

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Today we got the results for the genetics test that they took when she was first diagnosed.  There are a number of things that they take into account when they decide if she will be in low, normal or high risk. This also determines the corse of treatment and how harsh the chemo will be. The genetics is just one factor of many.  We have been praying that Chloe's genetics would come back good or low risk category. God answered our prayers! We are so thankful! They have not put her in a low or high risk yet but that is one less thing that we need to worry about in the process.

Tomorrow Chloe has another lumbar puncture.  We are praying that the chemo is working well. Please pray that she is a "low risk" patient and she has a complete recovery with not one cancer cell left in her body.  Thank you for all your prayers and support!

-Andrew ( Chloe's Daddy )