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.
|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.|
|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!|
|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.|
|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.|
|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 #273...hair 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.|
|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!|
|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.|
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.
"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