A closer look

Emma is between tests.  This morning she had a PET scan for the 2nd time.  Her first was done the day after her diagnosis to determine the stage and extent of her cancer.  Today's scan was to again determine if the chemo has been working, to check to see if it has spread and ultimately help to "restage" her Lymphoma.  She was required to eat a high protein dinner with lots of green vegetable and no carbohydrates, as carbs (sugars) look very similar to cancer cells in the body in the PET scan.  So we had a ham, cheese and egg quiche, steamed broccoli and a big salad.  She then had to fast from food, but drink lots of water this morning until after the scan.  They had to start an IV (one of her least favorite forms of torture) because we could not wait for an available appointment that included an actual physician to access her port at the radiology clinic, so we put numbing cream on both hands on her best looking veins and thankfully, they accessed the vein on the first try with no pain.  Yay!  You gotta celebrate the little things sometimes.  She peacefully watched a movie on her portable DVD player while we waited for the "contrast" to be injected into her IV and to travel all around her body.  (She kept telling me different parts of her body that would suddenly have a sharp prick or pain sensation).  I assured her this was "normal"  however how the heck am I supposed to know what "normal" feels like to a body being bombarded with chemicals that get delivered in a metal syringe that is stored in a huge heavy steel box that has a lock on it, similar to radioactive materials.....oh wait........that was radioactive material they just injected into my 10 year old little girl!  (but I digress..........)  The scan part went beautifully and she peacefully layed still while her body was transported slowly through the large tubular machine. We packed up, hit a drive-through for pancakes and eggs.....she was starving.....and made it to school by morning recess.

"Relaxing"

Tomorrow is her CT scan.  A wonderful experience not unlike today where she has to fast again and then get injected with a different kind of contrast that makes people feel like they wet their pants.......SUPER.........dignity people, dignity.

Warm blankets are a cozy perk of all the tests

She then has her regular clinic appointment for a blood draw and general check in.  We are hoping to get the results from both scans, high blood counts, and an encouraging report on her prognosis.  We feel wrapped in support and love.  Thank you for caring.

-Rebecca

Day 29

We hit our first milestone today.  Emma has completed her 29 day "Induction" period of her treatment.  Tonight will be her last dose of her daily Predisone (3 x's a day) dose.  We are praising God that her reaction to this medication was minimal.  After reading the daunting list of common side effects including:

• Increased appetite, weight gain and fluid retention
• Full or round "moon" face
• Stomach upset
• Acne
• Increased blood sugar
• Irritability and mood changes
• Less resistance to infection and longer time for healing
• Increased blood pressure
• Weak bones, fractures
• Muscle weakness
• Cataracts

we are so thankful that she only experienced a few of them and they were mild.  Even her doctors commented on how well she did.  She will take this drug again for the first 5 days of every 21 day cycle on a higher dose and will get a rest from it for days 6-21. 

To celebrate this achievement, she received a puffer fish glass bead (to represent the full face) for her Beads of Courage necklace, along with a cute face bead with crazy hair (to represent hair loss) along with a handful of other beads.  She's graduated to her second string already!

Grammy (Rebecca's mom) went with us to her clinic appointment and then we headed out to a girl's lunch to celebrate her milestone.

Emma and Grammy

The view from Emma's lens

Any guesses to where we were?

Photo by Emma

It was one of the stormiest days we have had here in California all winter....record breaking and tree falling wind and rain.  The storm swirling around me and blowing our car around the freeway was intimidating, powerful and destructive.....not unlike our journey.  The news we received today after hearing her counts were again "great" were to expect a drop by early next week.  Once she stops the Predisone, her body will truly be experiencing the full force of the chemo killing effects.  It will no longer have the artificial boost of immunity and blood counts.  It's a eerie feeling......knowing something bad is coming, but not knowing how destructive it will be.  We are bracing ourselves for the storm.  We will ride it out, in the comfort and protection of our faith and with the help of you, our beloved circle of support.

The storm is coming....

Dinner was provided to our weary family today from some long time friends....such a blessing.  Emma will be able to attend Enrichment Class tomorrow at school since her counts were still good........such a blessing.  Reminders of love and provision continue to fill my inbox........such a blessing.  The storm will come, the storm might be huge, the storm will pass, the sun will return......such a blessing.

God's promise of protection and care-this picture was taken on our property on Februrary 26, 2010.... One year almost exactly from Day 1 of her treatment of Lymphoma which started Februrary 23, 2011. 

Emma will endure a 2 hour PET Scan on Tuesday and a shorter CT Scan on Wednesday as well as a clinic visit and blood test.  We will find the results from both of these scans on Wednesday when we meet with her doctors, and we are praying that the cancer has not spread or become worse.  We are praying that the induction has been successful and the effects on her body are not long term.  We are praying that she stays calm during both of these "lay on the table perfectly still" scans.  We look forward to starting the "Maintenance" cycles of her treatment protocol-15 total.  The sooner we begin, the sooner this whole ordeal will be in our rear-view mirror.  We know we are in good hands, but the storm still causes our hearts to beat a little faster.

  The heavens declare the glory of God; the skies proclaim the work of his hands. Day after day they pour forth speech; night after night they display knowledge. There is no speech or language where their voice is not heard. Their voice goes out into all the earth, their words to the ends of the world.

Psalm 19:1‑6

-Rebecca

They all wore hats

Emma is back row center wearing a hat made and donated by Confetti Betty Couture

Today, Emma's 3rd/4th grade class all surprised her and wore hats to school to support her new fashion statement.  They were adorable!  So much love, so much acceptance, so much support.  Thank you Mrs. Sardella and Harvest Ridge Cooperative Charter School kids.  You make our school a place of peace for  Emma Kait. 

The Circle Grows

Friends,


I am humbled today.  Emma Kait's story.....well really, it's no longer just her story, is reaching out.  It is becoming YOUR story, in every act of participation. Her Face of Faith is touching others and they in turn, are compelled to give, to love, to offer, to gift us in ways unimaginable to us.  In the last 48 hours we have been on the receiving end to many of these gifts of pure love and I must share my thankful heart, a mother's heart that swells with appreciation,  thankfulness and utter peace.  You are surrounding us with love and support.  Emma's circle of influence is growing, out of our reach, yet that circle is coming around her to protect, provide and carry.

I must share two messages that I received just his morning.  The first is from a wonderfully generous friend of a friend who is designing and making a very special bracelet for Emma Kait's journey.  Please read the blog entry she posted this morning:

From Dawn


Also,  a company in Washington State makes beautiful head scarves and donates them to cancer patients free of charge.  This personal message was sent to me.

Dear Rebecca,

Last week we sent Emma a beautiful It’s a Wrap in our silk print called Aqua Stripe. Affixed to one of the tails of her It’s a Wrap you will find a small Swarovski Good Wishes fairy as a symbol of hope and Good Wishes from our team.

 

Thank you for contacting us on Emma’s behalf; please know that there is a small village of us in Washington State rooting for her recovery.

All my best,

~Linda

Please become a fan of our Good Wishes Facebook Page to follow the wonderful press we receive from the media, our recipients and sponsors.

http://www.facebook.com/425magazine?ref=ts&sk=wall#!/pages/Good-Wishes-Program/136038466447714

________________________
Linda Rawlings
The Finest Accessories, Inc.


I sit typing this at her school looking outside at a sunny playground full of kids.  Emma is there.  Her counts were high enough yesterday at her clinic appointment that she was cleared to come to school today and tomorrow.  She is LOVING it.  The normalcy, the noise, the work, she is soaking it in.  I'm so proud of her fellow students.  They don't stare at her thinning hair.  They tell her how cute her many hats looks. They don't treat her differently.  They all greet her with "Hi Emma!" everytime she walks in the door.  This a a place of love and acceptance and understanding and I am so thankful. 

Blessings to you all!

-Rebecca

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 life....plus 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 #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.

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

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

:)