Details

It's in the details of life that make a difference...that make us notice.....that change us forever.  We are learning at church that a situation or story looks so very different if you zoom in on the pixels...the very minute particles of a painting.....that make up a whole masterpiece.  Those details are penned by our Creator and to change them, changes the whole.  A complete story cannot be told without the details that happen along the way.  I've been noticing those details lately, because it's easier than taking in the entire journey at once.  It's how God is showing us his love and care and it's how others are showing their love and support.  These are some of the details lately regarding Emma's journey......

Emma's 3rd and 4th grade class last year with Mr. Monkey

*She started 5th grade this week at school.  She sits among 23 other students who all accept her and love her and celebrate with her the fact that she has a bit of hair growing back.  They smile and laugh and look forward to the days that Emma can't be in class due to Dr. appointments or hospital stays, when Mr. Monkey, a stuffed animal, gets to attend class in her place.  They are a group of 10 and 11 year old kids whose hearts are open and are learning every day how to live alongside a person who has cancer and support them.

It's a beautiful thing.

Studying with two of her classmates

*Emma has a new teacher this year.  It's his first year at our school.  He attends a church who has been supporting and praying for Emma Kait since the beginning of her journey.  She listens to an ipod that they sent her along with an amazing gift basket of things to help her find joy in her circumstances.  He said to me, ".....I think one of the reasons I'm at this school teaching this year, is because of Emma Kait.  I didn't even know her when I took this job, but I'm learning so much because of her.  She is a light in the class when I scan the room. "

It's an awesome thing.  

Before going in to the concert

*We got a call last Friday from a friend who had tickets to a concert that she'd love to give to Emma Kait.  We attended the Taylor Swift concert on Saturday and Emma got to experience an incredible show and sing along with 13,000 other little girls to songs like "Fearless" and I couldn't help but smile when watching her. The seats were incredible and the people who were seated right in front of us were all teachers and immediately celebrated with Emma and gave her a poster and flashlight to help in the concert experience. She enjoyed it so much.

It was an exciting thing.

Some of her circle of support celebrating Emma's 11th birthday

*I run into people EVERY DAY who ask about Emma and share with me how they pray for her and their kids pray for her every day....without being asked.  I truly believe her journey has gone so smoothly because of the enormous amount of prayer support.  People we don't know and people we know are praying for her.

It's a powerful thing.

*The Fed Ex driver who delivered the package of Face of Faith bracelets today, when I mentioned they were bracelets to support my 11 year old daughter who was fighting cancer, opened up his door again and asked if I wouldn't mind sharing one of the bracelets with him.....he said he'd love to support her in her fight.  He drove off with a new pink rubber bracelet around his wrist.

It's a heartwarming thing.

Emma Kait-11 years old and more beautiful than ever

*The upcoming Walk with Emma Kait benefit walk/run in the beautiful and majestic Auburn Overlook.  Last year, before her diagnosis, I would walk and hike those very trails by myself and God would speak to my heart.  I think He was preparing me for the next step of my life which would require strength and bravery in amounts I've never before had to utilize.   I love the fact that we are able to attend an event in that very same location, along with our circle of supporters, to celebrate Emma's half way mark of her treatment.  God brings us back to places of significance in our life sometimes to help remind us that He's always with us, both in times of peace and in times of struggle.  

It's a remarkable thing.

At then end of this journey, I know we will look back and see it as a huge hurdle, a momentous detour in Emma's life.  It will become a story that will fade into her history of childhood.  I'm praying we don't forget these details, as they are the things that helped us move forward, get out of bed, smile in the face of fear, and walk each day with a renewed spirit.  Thank you for being a part of it.  

Emma and her dad

-Rebecca

Wonder

Be strong and let your heart take courage, all you who hope in the Lord. 

Psalm 31:24

It was Emma's 11th birthday last week.  She had a week of celebrations and each time we sang "Happy Birthday to You", the words meant so much more to me than ever before.  It was a rallying in my spirit, a surge of hope and overcoming, a hint of nostalgia and a bite of fear all wrapped into one little song.  Cancer or any other life threatening disease has a way of spotlighting events like birthdays in a way, unnoticed before.  It was a celebration for us.  Happy Birthday my dear one.  I am so proud of you.  

Her Gramma and Grandpa (Jon's parents) gave her a card that was so perfect and poetic in what is said....I must share those words.  

Life is hard sometimes, crazy, mixed-up, messed up. 

And there you are, in the middle of it all, 

just doing your thing....

being strong and brave and beautiful 

like it's no big deal. 

But let me tell you, girl, 

it is!

Not everyone can do what you can do. 

Not everyone can handle things the way you can. 

While you wonder sometimes

if you're doing ok.....

the rest of us are just watching in....

Wonder.

We are watching in wonder...every day, every hour at the strength she has and how her life is touching others.  Emma has chemo round #7 this afternoon.  We are praying for strength and control of nausea.  She has been diligently working on her independent study school work in preparation for classes to start on September 6.  We march on toward that unknown date sometime this spring when we can say, chemo is behind us, our life is before us, we can rest, we can relax, we can celebrate!  While we wait, and face each round, she continues to fight and be an inspiration to us.  

-Rebecca

Walk with Emma Kait

My generous friend, Jen Russell (who helped tremendously with Emma's Bald is Beautiful event and also owns a company who organizes runs) is planninga benefit 5K or 10K run or walk for Emma Kait on October 1, 2011.  We are so humbled by this offer and thrilled that Emma wants to try to walk the 5K!  We would love to see many of you out there walking (or running) with her.  We chose the date, partially due to the fact that it marks the half way point in her chemotherapy treatment schedule.  That's a reason to celebrate and get out in beautiful fall weather at the American River canyon overlook in Auburn!  Here is a link to the information about the WALK WITH EMMA KAIT.  Thank you friends.  I will be running that day.....running to support, running as a challenge, with each step farther and farther away from Lymphoma! 

Walk with Emma Kait 

-Rebecca

Summer is fleeting

It's that crunch time of year....anticipation of a new schedule, excitement over seeing school friends again, the familiar yet sometimes constricting rhythms and responsibilities of the fall returning.  Ours is mixed with the familiar and the newer familiar of adding, "CBC clinic appt." and "CHEMO" to my google calandar on the same day as "Soccer pictures", "School Orientation" and "Dentist appt."


Emma has had a great summer overall, and I will update with pictures soon.  I forgot to take the camera to Girl Scout camp, so I have to borrow photos from friends who were with us.  We are off to that first day of school orientation that my calendar says we must attend.  I think part of my transition to fall is that my brain shuts down a bit in the free thinking arenas and relies on what my calendars states is next...

She had a clinic appointment yesterday and her counts looked great...1400!   She is generally feeling really strong and is excited for school to ramp up.  Chemo is scheduled for next Wednesday afternoon.  #7 here we come. 

Blessings to you.

-Rebecca

Turning Right at Wise

 

Emma Kait - August 1, 2011-6 months into her treatment

 

 

 

After six months of fighting a horrible disease and understanding the gravity of the situation my little family has been thrust into, I’ve realized that there is still so much to learn and even more to share.  Knowing that my amazing wife and best friend, Rebecca, is usually at the helm of this blog, I’ve decided to high-jack it, say hello, and share a little about the journey thus far.

For those new to the Lymphoma roller coaster our daughter Emma is on, she was diagnosed in February of 2011 with Anaplastic Large Cell Lymphoma.  Since that day we have learned, lived, cried, and prayed, for her health, our sanity and understanding, and God’s healing hand in this battle for the life of our 10 year old. We created this blog to share the experience.  We hope to not only teach others what we’ve learned and what methods that have worked for us, but to learn ourselves from and heal from comments posted by our amazing followers and supporters.

Emma sleeping and fighting the newly added Methotrexate.

When Emma was born I had just begun an eleven month attempt to build our first home out in the country.  After finishing college, we quickly left San Diego and headed for the hills. Freshly relocated back home, Rebecca and I knew which direction we were headed. I had goals in mind, set my sights, put my head down, and started down the road of being a dad.  Every day after work I would drive home using the same path to work on building our home.  Life was simple and easy. One kid, one more on the way, why deviate from the way I always drive home.  Wind down the valley, across the river, turn right at Wise. Simple.

Fast-forward 10 years and life has become everything but simple. Even using the word “simple” doesn’t seem to fit.  Stressed.  Tired.  Frustrated.  Worried.  Definitely not simple. With Emma’s diagnosis came panic, worry gauged in tons, prayers by the minute, and learning like we had while earning a degree.  We began to watch and listen to the other parents in the Oncology center.  Each story must be different, right?

Waiting for Chemo, Round 6

After regaining our vision from the initial impact of news, we quickly realized how similar the stories of each child and parent or parents really were.  So many children.  So much heart ache.  Such great hope and love. We learned volumes from total strangers that would take us in, after noticing the “deer in the headlights” stare we had on our faces, thus giving them a rough idea of where we were in our journey.

Two months after Emma’s diagnosis we hit a rhythm and found our step.  Rebecca was getting really good at everything Lymphoma related.  She knew the steps needed for this, where to go for that, and who to call if a fever popped up again.  She’s amazing. So much talent and love.  But as we would begin to feel our face in the wind, we would notice that our dreams and direction were cloudy and vague.  Nothing could be planned too far off in the future, for fear of a fever spiking up again and a mandatory three to four day hospital visit. We felt in limbo.  Life was complicated.

Now, today, we’re still only six months into our treatment plan for Emma Kait, but have started to tease the dreams again.  I’ve been catching myself dreaming of Emma’s first car and how I would surprise her with it. I’ve dreamed of the day when the actual protocol treatments are over. We’ve dreamed of a family trip to celebrate our crossing the finish line.  We’ve contemplated retirement when our kids are all married.  I would almost say things are getting easier.  I still worry and fear.  I still watch our daughter in amazement that she knows the tastes and smells associated with the hospital’s specific floors and can equate them to various drugs being given to her through her port.  I still sit in disbelief with each clinic visit, wanting to rub my eyes as I wake from a bad dream.  And I still break down and cry as I explain to some stranger that has a daughter, about Emma’s story and why my head is shaved and I’m wearing a bright pink bracelet, all while in the plumbing supply store.

Having fun during the good cycles of chemo, watching the Sacramento Capitals courtside.

On August 14, Emma will turn 11.  She’s turning into a little lady.  She’s been forced to learn so much and grow up so fast.  We all have.  Life won’t stop.  She will grow.  We will live. But if I’m to focus on the great things that we’ve found in this journey and pass it along to another worried parent stuck in the eye of a horrible storm, it would be that there is an undeniable amount of endless love from Him, our God, promising that this will pass.  It might be that there is an enormous amount of love and support available to you from others passing through the unimaginable.  Friends have become great friends.  Family will become a family that I can’t describe well enough with written words.  Strangers will love and encourage. Wisdom is always available at every intersection, as is anger and fear.  Pray for them.  Love them.  Hold them.

Waiting with Dad in the Oncology clinic, making paper flowers for the doctors, nurses, and patients.

-Dad

The Crazy Lazy Days of Summer

Thank you for being patient and allowing us the freedom to enjoy summer for all it has to offer.  More choices, less schedules, less computer, more outside, later nights, later mornings....ahh summer. 

Last Monday was another milestone in Emma's treatment.  Chemo infusion # 5.  1/3 of her treatment is behind us.....10 more to go.  She had one day of feeling pretty crummy, but then improved and has had a great week since.  We visited the clinic today for her weekly blood test and her counts were great...1700, her hair is starting to come back and starting next round, she won't get the "big guns" chemo called Doxyrubicin anymore as she has reached the critical limit that her body can take. They will switch it to Methotrexate for the remainder of her regimen.  That should improve the nausea she fights and will be a pretty "mild" dose of that medication....all reasons to celebrate. 

We've had many days of summer fun mixed with clinic visits and one hospital stay.  Not bad.  Here are some photographic depictions of some of the crazy and some of the lazy. 

Girl Scout Sleepover-water balloon filling station

Girl Scout cuties

A girl on the beach loving every minute

Crazy is painting toes on the beach!

Lazy Santa Cruz days

Emma and Lily

Riding at home

Rebecca being lazy and loving it!

This is the crazy face of a girl who does not like the smell, taste or association she has with the clinic.  I don't blame her. 

Accessed

Crazy x-ray of her port seen in her chest film

Folsom Lake

Family BBQ and gathering at our house.  Cousins from LA visited and we got to meet our newest baby niece Grace.

Our crazy goat checking out the construction project.

Summer dinner

Bon fire in the back yard by the apple trees with cousins

Lazy dogs and a happy girl

We continue to be blessed with dinners from family and friends that arrive on Monday evenings after our clinic days and we are always so thankful.  We are praising God for his protection over Emma's body and the energy and health she has experienced so far this summer.  We march on.  Every day is a new day and we are taking notice of the details. 

-Rebecca

I've been waiting

 

It's been several months since Emma's diagnosis of Stage 3 

Anaplastic Large Cell Lymphoma.  I still can hardly believe it and sometimes it feels like a story I am hearing secondhand and not a story I am living in my own home on a daily basis.  I see her photo in the church newsletter in the section of people that need prayer, and we continue to receive mail addressed to her and cards of love and support, but it continues to catch me off guard that it's my daughter, my own flesh and blood, my sweet 10 year old girl, our Emma Kait.  How did we get here?
 

 We spent 5 days in the hospital last week instead of on the family camping trip that we had planned with a group of great friends.  I had trouble packing for the trip and somehow I think I knew it would not workout like we thought....it's kind of been the theme of our year so far......plan B, or C, or....H???

 

Emma developed a fever and was neutropenic and so was checked into the hospital straight from her clinic appointment to check counts on Tuesday.  Jon took the boys to the camping trip and they had a fun, albeit "not quite the same" family trip without us girls along.  I feel like I should have been more disappointed in the fact that we were missing the trip, but the undercurrent of all the twists and turns of our journey is that we are just riding along, we are not in the driver's seat.  It's unsettling sometimes because I don't know which direction we are turning next, but it's also a little bit peaceful, in the same way a child feels in the back seat of the car when a parent is in charge of the journey....they can relax, look out the window, daydream and even fall asleep because their loving parent has the map, the route information, has checked the tire pressure, filled the gas tank and even packed snacks.  They know and trust intrinsically that their parent will see that they arrive at their destination safe and secure.  I am that child.  A child of God.  He is in charge and loves me and is the "driver" of this journey.  We will be delivered.  Praise Jesus.

I heard a song not long after Emma's diagnosis that spoke to my heart like no other.  "Blessings" by Laura Story.   I've been waiting for it to be released onto Playlist.com, so we could have it on her blog.  I feel like it's the theme of her journey.  Please allow me to print the lyrics and forgive me for having it play as the background music to her blog. (Scroll to the end of her blog page and press play if it doesn't load automatically).
It speaks to me.....it helps me to have perspective.....it quiets my soul.  I've been waiting for it.

Blessings

Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

-Rebecca