Thursday, March 17, 2011

Just a Glimpse

During my studies in college they taught us to carry a camera at all times. Shoot everything. Document anything with life. Show the angle. Bring your experience to the viewer. I was young and simple minded, so I simply went walking around San Diego taking photographs of pointless things with no meaning. Lately I've had "meaning" on my mind every minute of every day. Nothing is too small or too insignificant. I'm constantly rifling through my memory and apologizing to old friends, wishing I had done this or that differently, and realizing the error of my ways. I missed too much. I didn't pay good enough attention. I wasn't focused.

Cancer has a way of making you focus, like the way you would notice a hot nail being driving into your hand. The pain is so real is forms a taste. It forces you to focus. With this new found clarity I realized I wanted to document everything. This journey is changing our daughter's life for ever, each minute of every day. I don't want to miss anything. Cancer won't define her, her faith will. Having these photographs will help us remember the struggle of the journey and bring a light to the memories, good and bad. I don't want to forget this path. We can't and shouldn't hide from it. We need to embrace it, remember it, and learn from it. 

The photographs below are a simple glimpse into the normal day during a chemo treatment. Each morning seems to be the same, so I thought I would capture it to keep and learn from. We're actually finding a form of rhythm, which is both shocking and comforting. At first we we're simply crushed parents without a clue. I couldn't find the hospital. I didn't know which off-ramp to take. I couldn't find a gas station with diesel. Navigating the one-way streets of Downtown was frustrating if not impossible. Focus was lost due to tears and a constant cloud in my brain that wouldn't allow me to complete the simplest of tasks. With each appointment and prayer, this would all change. With time it has become familiar and easier. The freeways, off-ramps, turns left or right, all became clear. I hope these pictures will bring you, us, anyone in this journey, or those that may need to take this path in the future, clarity into the heart of a little girl, with faith greater than her father, love more pure than I could have ever imagined, and the strength only available through God.

- Jon

The drive: 35-60 minutes, depending on mood, traffic, and how many exits I miss due to deep thought mixed with massive amounts of worry and prayer.

Emma's usual pose as she's driven to her various appointments for blood work, chemo, spinal taps, and surgeries. On the way back she's usually asleep from exhaustion or who knows what type of drugs.

Sutter Memorial: The last time we were here as a family, our son Ben was in the NICU for nine days with newborn respiratory distress and a  pneumothorax.. I thought it would be the last time I saw this tight parking lot, old building, and maze of Downtown one-way streets. Who knew!?

Our home away from home. Sutter Pediatric Oncology, Surgery, and Hematology. The first visit we were here for a simple surgery. I didn't even want to look at the side for Oncology..."that's not us" I thought.

Sutter Pediatric Oncology - I still can't believe it each time I walk by the sign, so I had to take a picture of it. Therapy for me, taking the photo and being forced to walk by it.

Rebecca and Emma. Here is where we wait, usually with other pediatric Oncology patients, watching movies, playing games, and thinking...a lot of thinking.

Emma getting weighed in before accessing port, chemo, and spinal, more chemo. Everything is based off of weight. If they lose it, ask why. If they gain it, ask why. Know you Kg/Lbs conversions too!

Wall of Heros - Kids from all walks of life that have braved the toughest thing on Earth. Emma will have her photo up here, guaranteed! When we first walked into the Oncology center this was shocking. Such beautiful children. So many amazing stories. What shocked Rebecca and I the most is that we know three kids on the wall and one is Emma's cousin, Isaiah.

Each patient has their name on a sticky note, on the door, telling you where to go. Small, insignificant thing, but seeing it makes you feel welcome and not alone.

After you finally get to your room, vitals are taken, concerns and issues are voiced, and then you wait a little more. Each room is brightly painted with very kid-friendly artwork. It seems to be a reminder to these tough little patients of some of the joys in they're fun to look at.

Strong and determined face of faith, Emma Kait.

Emma took this picture of her tired parents, as we waited for her turn to have her port accessed.

Accessing: Port access is a constant source of fear and requires flexible parenting. Emma's getting great at it! We've found that covering her head while talking to her, holding hands, and showering her with kisses, works great!

Finally accessed, her port now serves as the conduit for chemicals, blood draws, and infusions. Located four to six inches below her armpit, it will be removed after her final treatment in 12-18 months.

The loves of my life.

Daddy and Emma, waiting patiently. No, my hair isn't normally this short. Where she goes...I go.

Faith has a face. It has a name. Her name is Emma.

Rebecca doing what she does so well! SO organized!!! To anyone that needs to take this journey, take as many notes as possible. We've noticed various times where Rebecca's notes have served as a reminder for the physicians. You are the best and sometimes only advocate for your child. Write it all down. Save everything!

Trying new techniques with the new Buff. We got the idea to get these at REI from our great friend Jeanine. They are amazing!!! All the nurses and doctors love them on her.

Finished Buff style styles and hat options help to create a smile of joy, confidence, and peace.

Still waiting. We leave the house at 9am and get home at 5pm.

Walking down the long hall from Oncology to the fifth floor where the spinal and chemo take place. She now knows the way, what to expect, and how long it might take.

Once at the fifth floor, we wait again for our turn. They take patients by age, youngest to oldest. At 10 years old, we have quite a wait. Each room is the same up at the fifth floor. There are two beds. Patients move in and out quickly. On this day we had two different patients come in, wait in the bed for a while, and then move on to their procedure.

Thank goodness for a borrowed laptop. It keeps Emma connected with her school and friends. Her grin is because she gets funny tastes in her mouth the second they put something in her port. Chemical Warfare!

I watched her little fingers navigate the computer like an old pro, chatting with anyone connected on Skype and playing games to keep her mind off of hunger. They can't eat anything starting the night before her treatment. Her last meal is usually at 9pm the day before. Treatment ends and she can eat at 3pm. The hunger seems to be the worst part for now.

A young girl, forced to grow up so fast, humming songs in her head the entire day...seriously...the WHOLE day! My heart sank yet I felt so proud and humbled at her constant humming. She always has a tune in her head. Never sad. Worried and frustrated at times, but still humming.

Getting prepped for the spinal. We can stay with her until she's asleep, then we leave and wait in the room down the hall. It's extremely difficult watching your child go limp. Hopefully with time I'll get used to it.

Waiting. We've gotten good at sitting and waiting. Think, wait, think, wait, think, and wait! Repeat if necessary.

Trying to get food ready for everyone, so Emma can eat once she's awake from the spinal. Caffeine helps with the spinal headaches! Who knew!?

Apparently when you have a really crappy illness, your parents get you whatever you want...within reason!

Support Central: Rebecca's small corner of connectivity, both in prayer and technology, has given us so much hope and ability. With a bible, Wi-Fi, and a cell phone anything is possible!

Not sure if this thing is our friend or foe. We watch, listen, and wait, as it pumps our little girl full of life-saving chemicals...yet the nurse has actual "chemo" gloves she must wear and guards any spills like a ticking bomb.

The One: Doxorubicin, or Dox to us now, might be pretty to look at but isn't pretty to the human body. Very, very, mean stuff! Dose is based on weight. She has a 15 minute "push" of Dox, then they flush the line, clean and account for everything. There appears to be a very exact science to this madness...doesn't make it any easier to watch though.

We've meet so many wonderful doctors, nurses, moms, dads, and patients. Each story is different. We've been told that numerous times. You never know how each patient will react to each treatment. Nothing is set in stone. They may lose their hair, they may not. They may get sick, they may not. Such flexibility causes frustration and hope...strange. This is just our story. Rebecca and I want to thank you all for coming along. For praying. For loving our daughter. For your thoughts throughout the day. We can't imagine doing this without you. You give us a shoulder to cry on. Our amazing Savior gives us incredible strength. He calms us in this unimaginable storm. He won't forsake us.

Thank you.

"Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing."
James 1:2-4


  1. Thank you so much for sharing such specific and intimate details of this experience. It helps us know how to hurt and hope and pray along with you. I want to know the next time Emma has to fast. I would love to be able to fast along with her.

  2. This comment has been removed by the author.

  3. (for a technology-challenged person, just commenting on your blog is a challenge! Kudos to you for being able to do all that you do from everywhere you are!)

    What I was trying to say before I deleted it:

    "Cancer won't define her, her faith will".
    Well said.

  4. Thank you for sharing from your hearts...each new story sits in my heart and reminds me to pray for Emma and the rest of your family throughout the day!
    Love that verse!

  5. i love you jon.
    somehow having these words be from my brother make me cry harder.

  6. You are all so amazing...I smile and I cry as I read this. Rebecca's smile is so amazing in these pictures! I can't imagine the strength you all have right now. Still thinking, praying and hoping for the path you're on to be clear, straight and directly pointed toward success.

  7. Another beautiful account, Jon. My favorite part is knowing that Emma "hums". I LOVE this... As a parent myself, I would find such true therapy in hearing my child hum their way through such an incredible, frightening experience. Emma... You are gifting your parents with this! My prayer is that the humming won't stop... That it will continue and even GROW.


  8. Jon,

    You are such an amazing writer and help all of us see just what you go through on these hard days. Your faith and attitude continue to amaze me! You all continue to be in my prayers!

    Much love,


  9. Jon your post is so touching. To see it from a father's point of view. My heart is so sad for Emma and your family. You all are in my daily & nightly prayers.

  10. Emma, I hope you're feeling better soon. I like reading what your mom and dad write.

    Haven Fasani

  11. ...Jon,
    you are becoming a great writer, like Rebecca, I'm torn, because you are sharing such intimate stuff, but at the same time, it's fascinating, scary, and, I know, and think it's needs to be shared, because these types of things you just don't want to admit, because it could happen to you. So you almost think by talking about, or thinking about it, you could somehow, get cursed, or infected by it!... "Taboo" ... I guess!
    As much as it hurts, keep sharing, and we will keep praying, and crying right along with you, ~Peace, Rick W, aka "Ryder"

  12. Jon, your writing and sharing touches me as much as Rebecca's does. I want to thank you SO MUCH for sharing and being so open about your experience as a family. Your sharing is awesome as it gives me a sense of ownership in Emma's experience (she's not in it alone, we are a family, a community). Because of your sharing, my prayers for all of you are more specific and intentional. Emma's pictures are very beautiful. I can hear her humming in her beautiful face. I love you guys.

  13. Emma Kait,

    I love you and I love your stories.



  14. Jon and Rebecca and Emma,
    Wow. I am astounded by all of your transparency. So true... so full of emotion... so full of joy and compassion... WOW. You are all warriors in the battle set before you... and you are reigning victorious through the strength of the Lord and His mighty hand, and the support of His family and the prayers of His people. I am so proud to call you my friends and to be able to stand beside you in this journey. I pray for you and your family daily as you walk this new "normal" for your family. You are not alone. There are many who are with you. In those lonely corridors, reach out and touch the hand of God as you KNOW the many of us who are surrounding you in prayer. We love you , oh so much.

  15. Emma Kait you are an inspiration to all of us! Stay strong and keep the faith! Hugs to you and your mom! Your mom is an AMAZING woman and I know she loves you with all her heart. I know your parents will be by your side through all of the up and downs! You are in my prayers!

  16. Dear Stanphill family,

    Emma, I am so sorry that you have alcl. My daughter Maggie is in treatment for the same thing right now, and she will finish chemo next month. Even though this is a rare lymphoma, you aren't alone, and we understand the road that you are walking. If your parents ever want to talk, find other resources or ask questions, or if there is anything else that we can do, please don't hesitate to email me. Keeping you in my thoughts and prayers.


Our Emma Kait

Our Emma Kait

Listen to Emmas Playlist

Get a playlist! Standalone player Get Ringtones