Daddy

"Daddy!!!" That's what I've heard from my little girl her entire life. She scolds me with it for doing something wrong, saying the wrong thing, acting the wrong way, or just being a weird Dad. I've gotten quite used to it. It's never delivered with an attitude or disrespect, just the fun love a little girl has for her father when she notices I've been teasing her.

Lately the "Daddy!!!" has been used in a different way since we found out about the cancer. It comes at times of pain, worry, and frustration. Times when she's forced to lay flat on her back in hopes of keeping spinal fluid from leaking and creating a massive headache for the next three days. It comes when Mom isn't in the recovery room because she was finally able to leave and eat in the hospital cafeteria, gathering her thoughts and grasping at sanity, crying tears that she doesn't want Emma to see, and Dad is the one by her side. It comes when the needles enter the room, are cleaned, and get closer and closer. I know, I understand that I'm second best, most of the time, and nothing fills a void like Mom.

Our roll as the Dad is usually different. We tend to work in the shadows, unnoticed. We're there to support, love, fix, and save. The last two items in that list are the hardest part for me with this new journey. I've had a perpetual headache for the last two months due to my lack of ability to fix my little girl. I can't save her now. I can't take this pain away. I can't put the hair back. I can't scoop her up and sing this away or distract her with my Daddy magic. This constant internal frustration must be the cause of the headaches, which in time will go away I'm sure. Her Daddy isn't built for this. My strength and determination isn't enough. This won't go away without some serious medical and spiritual help.

I often would wonder when I die, who would show up to the funeral? If, when something bad happens, who would lend a hand and offer to help? When the bomb was dropped and our lives torn to pieces on February 16, 2011 at 4:45pm, a gear was put into play within our transmission of life and faith that had never been used. I didn't even know it was there. Family, friends, close neighbors, and people we've never met, began to jump into action. I didn't ask for it. All I did as I was clouded in shock, anger, frustration, and the most raw sadness I've ever felt, was text my Daddy, stating that "we need some serious help, Emma has Lymphoma." This rush of love and support from you, our support network, scooped us all up like I couldn't do. It provided the strength and determination I lacked. It amazed me. It still daily amazes me. You've all been there this entire time and I've been too oblivious to notice. I hope I say "Thank You" enough.


Rebecca is an amazing woman. You've read her words, witnessed her ability, and felt her emotion. She's the love of my life. On May 9, 2011 we will have been together for 20 years. After 20 years I am still in awe of her ability to handle life. In college she was the top of her class. A perfect candidate to be a doctor. Loved medicine and fixing people. Sports medicine and Athletic training was the first glimpse into her ability to handle situations like our current journey. God built and prepared her for this, long ago, and we never knew. Her professor and mentor Dr. Kuglar would call her "Mrs." Not Rebeca. Not Miss. Just Mrs. He knew she had a purpose beyond Point Loma, beyond Athletic Training, and beyond anything he could teach her. God had built her to love children more than anyone I've ever seen. She left a career and future in the medical field to have kids. At first it seemed wasteful. Such training. So many hard classes, clinics, and hours of studying. Night after night she would come home with the smell of formaldehyde from dissecting humans. I didn't get it then, but cling to it now. She was built for a purpose. She's shining in that purpose. She too has been ready for this the entire time. A mom with a mission, the mind, and faith in God...Cancer should run. Not walk, or slowly leave my little girl. Run. It has no idea what Emma's Mommy is capable of.

I know I've rambled. I'm sure I've misspelled. Punctuation and grammar are probably off a bit. I'm confused. I'm scared. I cry at the drop of a hat. I feel I might get violently mad at the smallest thing that wants to hurt my daughter. I'm quiet and don't talk much. I've realized though that there is a Daddy's point of view that I want to share and that this blog, reading and writing, is therapy for us all. I need this. I've feared cancer since I was a kid. I thought it would attack me. I knew it. I didn't know it would attack my child though. When the "bump" first appeared on Emma I immediately thought it was cancer. I don't blame the doctors. I wouldn't mind "revisiting" a certain surgeon, but they're all human and I can't blame them. Had they found it earlier she would still have cancer. What can we all learn from this? Ask more questions. Insist on more testing. Think outside the box. Press for every angle. Get multiple opinions. Never give up. This is your little girl, whom you've loved from day one. Every cell in her body is from us, blessed by God, loved by all. Scoop her up. Protect her. Pray with her. Yell to the highest mountains for her and defend her with your questions. Don't give up. Love her...Forever!

- Jon

Message from Emma

Hi everybody it is Emma. My hair started to fall out so my mom's friend Sarah cut it. I really like it short and bouncy. If I mess with it some hair comes out. I can't wait to read your new posts!

Emma

:)

The pendulum swings

I started this post on Tuesday of this week and the title was "A lighter load".  In that post I had photos and descriptions of how our week was going and I was feeling so positive and at peace. As the week marched on and I didn't finish the post, I found myself feeling so weighed down, the post title changed to "A heavy weight" as we experienced fear, uncertainty, and reality of many details of our situation.  Now, today, I realize that this is our new life....for now.  Every day brings a new challenge and hard parts, but in the midst of that, we are being carried by love. The title I decided to use, reflects that part of this journey.  "The pendulum swings" describes a constant motion, ever changing, ever moving.  The pendulum can not stop, for it is an essential element in the workings of the clock.  There is a bigger plan happening around us while we hang on to the pendulum.  We feel positive and energized sometimes, and other times we want to curl up in our beds and have it all go away, but the One in charge is never changing and never leaves us.  We can be sure of that truth.

‎'Come to me, all of you who are tired from carrying heavy loads, and I will give you rest. Take my yoke and put it on you, and learn from me, because I am gentle and humble in spirit; and you will find rest. For the yoke I will give you is easy, and the load I will put on you is light.' (Matthew 11:28-30)

Emma had her hair cut on Monday morning by our sweet and generous friend, Sarah.  Emma LOVED it.  Here are the pictures of that day. 

She has a LOT of hair.  Everyone comments about how thick and beautiful it is.  She has always wanted to cut it and has cut it twice (once when she was 3 years old and wanted to be like "Mulan" from Disney who cuts her hair off with a machete).  She is not attached to her hair, like I have been.  

Almost 2 feet of hair.

So excited for this day

The cuts are harder to watch for me than her to expericence. 

Joy

Half way done

Happy with the results

Finishing touches

The happy girl

Finished results

 We then had a clinic appointment that afternoon and had a trying episode of accessing the port.  Picture two nurses and myself trying to console and hold still a fighting and scared 10 year old girl, while they clean and prep a sterile area to poke a needle into a still very swollen and sore port area.  We survived the "access" and then learned that her blood counts were indeed high enough to be able to attend a Sacramento Kings game that evening which our good friends, Kyle and Angie generously gave us tickets to.  We invited my brother Garrett and his girlfriend Erika and we all had a great time with the amazing seats only 8 rows back from the floor.

Emma and Erika's first time to a King's game

Getting closer to the floor

My girl

Excited and having fun

Uncle Garrett

Cotton candy quest

Since her blood work was very good, we have discussed and decided with her doctors that she can attend some school.  Tuesday and Wednesday "we" went back to school.  I say "we" since I worked there too as a classroom aide and the Physical Education teacher for the school.  It felt normal and back to our old life for those two days.  She got to be back with her 3rd and 4th grade combination class, back with her teacher, back on the playground, back working on her mission report, back at the lunch table and back to math homework.....(bummer).  I spent the time in my old office catching up on the piles of medical paperwork that has flooded our mailbox, sending emails, making appointments, etc. all while peering out my office window to the familiar playground that I spent every school day since September organizing classes and teaching great kids.  I almost could forget our reality.  It felt so good to be back.

Back at her team, "Stallion's Mane"

Thursday was different.  We had her scheduled clinic visit, port access, blood draw, chemo, anethesia, spinal tap and intrathecal chemo.  Our day started at the clinic at 10am and ended at 3pm.  The clinic was full of toddlers crying, families enduring, waiting parents, busy nurses, hurried doctors, screaming babies, and waiting and waiting and waiting.  The same kids cycle through the appointments so when I sign Emma's name in on the clipboard in the office, the names are all familiar.  We say hi to little Emma's mom as we have run into her every time we've been at the clinic.  We compare stories of how our Emma's are feeling and the procedures they are scheduled for during the day.  A sobering reality in our journey together.

Reality

The spinal tap went well, and Emma came out of anesthesia very happy and chatty.  They avoided a spinal headache this time by changing the needle used for her spinal tap and then "pushing" an entire bag of special IV fluids into her for an hour while she layed completely flat.  This increased her blood pressure which resulted in counter acting any negative pressure from leaking spinal fluid.  She did not suffer with any headache this time, so we were happy with that.  Feeling good.  Energized.  Hope-filled. 

We arrived home, exhausted from our day.  We had two care packages on our front porch meant to encourage and support.  It is such a beautiful expression of love and support to receive such packages. One of those packages was from a foundation that support families with children diagnosed with cancer.  The package was filled with a blanket for Emma, a sketch book for Ben and a DVD movie for Joseph. It also contained a check (what a blessing) and a folder full of information and pamphlets.......reality stings sometimes.  I didn't want to read this information.  I don't want to add to my brain the scary realities that are typed on the pamphlets.  I cringe at the words "childhood cancer", "prognosis", "patient".  I feel sad and burdened while I read a booklet called, "When your brother or sister has cancer" printed from the American Cancer Society, and it states that, "Every day in the United States, 46 children are diagnosed with cancer.  And every day, the brothers and sisters of these children are thrust into a world of experiences that will impact their lives forever."  I sink into feeling even more tired and more burdened.  We have two other children, that are included in this journey.  Two boys named Joseph and Ben that did not choose this journey, but are being swept along in it's churning waters.  I am sad, I am spent, I don't feel prepared to face the future and all that we have to do and experience as a family, and I feel weighted down. 

Recovering after spinal tap and chemo while lying completely flat

Strength beyond comprehension

We woke this morning and the sun was shining. The smell of spring grass growing and of plum blossoms emerging mixed with the smells of pancakes and bacon which starving and happy Emma woke up and made for her brothers. A feeling of hope slowly eeked back into my bones.  

Spring is one of my favorite seasons.  God knows I need the renewing reminder of His presence.  The rhythm of the seasons is a gentle reminder of the constancy and care of God.  The winter is coming to a close, the growth will happen.  The grass will fill in the scars of muddy ruts that were created over soaking driveways and pastures.  The gardens will return, the mowing and weeding will be needed.

The fact that with each handful of hair that is now filling our wastebaskets, there will be restoration.  With each poke of the needle, there will be strength.  With each meal brought, there is love.  With each mis-uttered word or lack of patience between my husband and I, there will be grace.  With each mistake, healing.  I am holding onto the pendulum.  I am finding that the rhythm of it's movement is comforting.  I know that with every hard and cold point, we will swing back into the warmth and peace.

Thank you Smith Family, for the handmade quilt

Port is Placed

Emma's port was successfully placed yesterday with "almost" no complications.  The 30-45 minute procedure began a hour late, took 2 hours to complete, had 3 additional incisions made, gave the surgeon "some trouble" getting placed, caused recovery to be rougher, then the port which was "accessed" under anesthesia (needle placed through the skin ready and waiting for an IV line to be attached to) would not work at first, so had to be adjusted, flushed (with no success) then de-accessed and then re-accessed with a new longer needle all while she was awake, and feeling quite sore from the actual placement of the port a mere hour or so before. 

It finally was successful and the chemo was given and we were sent home......gladly!

She rested today, watched some movies, and then even got to go hang out for a few hours at our close friend Amy and Bill's house (while the boys were at soccer and the mom had a quiet house to herself for the first time in 3 weeks....ahhhh).  It was a good way to end a very hard week.  She experienced no nausea this time from the one chemo drug that she was given, and we are praying that this week brings many more days of recovery, healing and rest.  

Here are some photos of the last few days.  Blessings, peace and rest to all!

Girl Scout troop......made it to a meeting the afternoon between inpatient and port surgery

Ambulatory Care pre-surgical wait

Early morning.....6am

Emma likes to cocoon herself in blankets after surgery....needing ice chips from dad

Port access problems

Endurance

The following photos are from earlier in our week

Happy to make Joseph's science fair....not happy to be so close to Ruby the snake!

Beautiful handmade quilt

Blogging from room 660 B

Peaceful spirit

Grace

Jacob and Emma-friends from church, bonded together through trial, protected and loved by God-please keep Jacob in your prayers.  His struggle is just as hard, just as deep, and in many ways more challenging.  Thank you friends. 

Determination

"For when trouble comes your way, let it be an opportunity for joy! For when your faith is tested, your endurance has a chance to grow.  So let it grow, for when your endurance is fully developed you will be strong in character and ready for anything."  James 1:2-4 NLT

God made Emma with one of the sweetest and most empathetic hearts ever.  He also gave her determination....one that she exhibited in fleeting glimpses.  I have been remembering other times in her life that give me visual representation of that determination  I knew was present in her heart, but now as she faces this journey, she is showing us proof , on a daily basis, how that DETERMINATION is there and it grows stronger and stronger.   

Our family spent many years traveling to a place called Sand Mountain in the salt flats of Nevada.  It's a true God created location and unusual natural wonder.  It is a mountain of white sand......rising up out of dry lake bed. Adventure seekers who appreciate the motorized source of recreation, travel there with their trucks, RV's, quads, sand rails and motorcycles to camp at the bottom of this mountain and....RIDE.

Waking up on the first morning

Joseph 8, Emma 6, Ben 4 years old

Joseph, Gavin and Delaney

Miss Emma Kait

Jon, Robb and Ben ready to ride

Top of the Mountain

God's glory never changes, his mercies are new every morning

Garrett and Jon at one of Jon's favorite places in the world-on the edge of the mountain

We spent about five years traveling there twice a year and spending a long weekend with wonderful family friends, many gallons of fuel, endless piles of sand, circles of kids playing around bonfires, and few quiet nights, feeding the husband's and kid's need for speed.  We all loved it.  It defined a more carefree time of our life....in many ways. 

There is a series of photos of Emma that keep coming to my mind.  She was 6 years old.  They tell a story.....a little girl....the only girl in our extended family at that time....surrounded by boys.....proving to herself that she could keep up......getting stuck.......having a challenge.........proving to herself and others.......she had determination.....

We never knew this was a glimpse into her future.  A future that would require this kind of determination for her journey.  The kind of journey that reaches above your head, bigger than your body, heavier than your strength, more daunting than your life experience, more mature than your age, but one that you rely not on your own determination or strength, but on God's alone.

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  

2 Corinthians 12:9

It's the little things

I have always felt inadequate and awkward when it comes to comforting someone in a challenge, a struggle, someone who is facing life changing realities, or someone who is mourning.  I have thoughts that swirl around about how bad I feel for them, how I would like to do or say something to help them get through the difficult situation, or thoughts about how I could help.  I usually fail to act or say much due to my insecurities about saying or doing "the right thing".

I am learning.  God is teaching me through this journey, that it's not really WHAT is said, but the love and honesty behind the words.  It's the little acts of care and thoughfulness....however small or insignificant seeming, that makes all the difference in how lonely or scary your situation feels.  Thank you for all the little things that are carrying us and warming our hearts.

Some of the little things:

Jeff, our nurse from 7pm to 7am, who offered to bring in a real bed (even though that is not "allowed" for parents) for me to sleep on last night to get a better night's rest.

Amy, who drove all the way to Sacramento to bring Emma her glasses.

Bethany, who painted Emma's toes......twice.

Nate, who simply texted me "love you guys".

Janet and Sharee, who baked us homemade bread.

Kim, our day nurse who issued me a parking pass for a whole month.....even though it should have only been for 3 days.  ($1 per hour of parking every time we are here can really add up).

Facebook messages.

Anissa and Chris, who sent a care package from Illinois complete with a portable DVD player for Emma.

Carmen, who packed me a "mom's hospital survival kit" in a beautiful floral tote bag with everything to make any hospital stay more bearable.

Notes and cards for Emma and for us.

My husband Jon, how could I have picked a better husband and father for our kids.  You are my first love and the only one I can imagine walking through this journey with side by side.  (I guess that's not really a "little thing" but after you seeing this picture taken this afternoon, understand why I mention this).


We hope to be discharged tomorrow.  Emma is feeling good.  We will go home to rest for less than 24 hours and then come back early Friday morning for her port placement surgery.  The journey continues....

The first bump

Within minutes of pressing "publish post" last night on my recent blog entry, Emma came into our room crying.  She was having chest pressure and pain, throat pain and stomach pain.  After trying to console her for a few minutes, and after taking her temperature and finding it within normal range, she started shaking all over.  We then called the Dr. and he wanted us to come to the hospital right away....11pm and he would admit her for at least 2 days.  She and I drove the 45 minutes on the dark freeway down to the hospital in Sacramento.  After a long IV placement (they punctured her vein, couldn't draw blood, administered 2 syringes of saline into her tissue, before finally finding the correct placement and getting a successful line) drawing labs, started stat antibiotics, and ordering a blood culture, we finally were able to rest.  We will be here at least 2 days while they culture her blood, looking for any hidden infection that may be the cause of her unusual symptoms.  The first of many bumps.......on our road.  Sigh!

She is feeling much better today and we are realizing that this is part of the journey.  We are praying for a cause of her symptoms and quick resolution.  We are also praying this does not push back her port placement surgery scheduled for Friday.

She spent the day adjusting to her newest hospital stay, playing scrabble with Grammy, eating Pirates Booty, watching a few movies and getting a "wish" granted by a wonderful program called "Little Wishes".  She was full of smiles after selecting a new Nintendo DSI to be delivered in the next few days.

Thank you for caring about her journey.  She continues to smile.