So Disappointed

Emma has been struggling with fevers the last few days, and we've visited the clinic two days in a row for blood work and IV antibiotics, but this morning at the clinic her ANC was below 500 meaning she was severely neutropenic and at high risk for infection or illness and when we went home her fever returned, so we had to go to the hospital this evening and be admitted.  We don't know how long this stay will be, but she is SO SAD at the thought of missing her Bald is Beautiful event on Sunday.  She was so upset at home when she found out we had to go to the hospital that she yelled and screamed she didn't want to go and then vomitted from being so upset.

I was at a loss for words on how to console her.  I knew getting admitted meant that we were probably stuck at the hospital for 3 days at least.  I knew she had to have her port accessed for the third time in 48 hours.  I knew that we are expecting over 650 people to attend and support her with their love at her BBQ, and they would also be disappointed that she could not attend.  I knew this fever was a reason for more worry and concern.  I know I can not change any of it. 

I am sorry, this post is so depressing....it's our reality right now.

I am praying for quick resolution of the fevers and I cautiously hope that there is a chance she might be able to be released by Sunday, but I doubt that will turn out to be the case.  I am praying for her spirit to be comforted in spite of this huge change of plans.  I am praying I don't fall into bitterness at the unfairness of this situation for Emma.  I am wishing things were different.

Thank you for supporting us.  Thank you for attending her event....even if the guest of honor has to see it in pictures.

-Rebecca

Mixed Emotions

We are feeling so excited about the Bald is Beautiful BBQ event this coming Sunday at 4pm at Del Oro High School.  We continue to be overwhelmed and humbled at the outpouring of love and support for Emma Kait by people willing to attend the event, donate food, donate to the silent auction, get sponsored for walking, help set-up, shave heads, etc, etc, etc.  It feels as though an army of people are coming together to help carry one little girl on their shoulders in her battle against a very nasty disease. She needs that right now more than ever. 

Speaking of that little girl.  She is tired.  There has been a very marked change in her energy level this past week.  Our entire family has been sick with the flu, and we spent the entire spring break draped over the many beds and couches in our little house.  Emma did not catch the same flu bug, but the effects of the very high doses of Prednisone and a new chemo drug called "MP-6" that she takes for the first 5 days of each maintenance cycle, has caused her to act like she's just finished running a marathon.  She hardly has the energy to get out of bed and when she does, she tires very quickly.  She was acting so out of the ordinary, that I took her for blood work yesterday just to make sure she was not getting anemic or had any other underlying blood issues, and found out that thankfully her counts were high (ANC 2500) and her other blood work looked good.  She is just plain tired from the assault her body is enduring from all the medications.  It's so hard to see your child actually ACT like a sick child.  It was easier in some ways to deny that she was being so violently affected by all of this, when she was acting still perky and energetic.

We are praying for strength for her and especially protection against fevers in the next few days, so she can attend the BBQ.  We are praying for energy to return so she can enjoy the remaining few weeks of her 4th grade year.  We are praying for health for the rest of our family. 

-Rebecca

Sneak Peek

Just got word from our amazingly talented bracelet designer that the Emma Kait support bracelets are being made as we speak.  Here is a sneak peek at the beautiful work she is doing.  There have been many obstacles that have been thrown into the making of these bracelets, but as Dawn says, "God always wins!"  We plan to have some of these available at the Bald is Beautiful event as well as by request via email to Rebecca.  More details to come.....

Thank you Dawn.  I've never met you, but you are a treasured friend and fellow warrior for Jesus.  Love and blessings to you. 

If you would like to support Dawn in her business and read more about how she got started, please visit her website: http://www.funkyfishdesigns.com/aboutus.htm


-Rebecca

Bald IS Beautiful

We are a hospital ward around here people.....the flu hit our house last Friday and is still raging on.  We are thankful for so many praying for Emma's health as she is the ONLY one who has not caught this particular virus of fever, headaches, cough and general feeling like a truck hit you and then backed up a few times for good measure.



I have been trying to post for a week now about our friends and loved ones who have jumped in and embraced the Bald is Beautiful concept already.  Please enjoy these images as much as we do as they are all individual stories of support in a very obvious and dramatic ways.  Each bald head (or dramatically shorter "do") walking around is a silent show of love for Emma Kait.   For each questioning glance or stare, each head shows the courage and support of our many amazing friends and family.

Uncle Garrett being styled by Rebecca

Papa and Garrett finished results

Cousin Gavin before

Cousin Gavin-no going back now

Emma and the boys

Aunt Christa in LA who skyped her head shaving (see Emma and Rebecca's reaction in lower right hand corner)

Beautiful

Big brother Joseph

Papa, Uncles Robb and Garrett, Cousins Gavin and Carter

Friend John who let his co-workers do the handy work

Looking good

They all got to join in the fun

When he ran out of hair, they got to doodle on his head! 

Thank you all....Papa, Jon (daddy) Gavin, Garrett, Joseph, Carter, Robb, Ian, Levi, Christa, John, Kathryn and Erika.  You are all truly BEAUTIFUL!!!

Therapy

Just as we began to celebrate the new ANC levels Emma had achieved, a whopping 700, a cold has crept into our home and decided to attacked Rebecca and Ben. So now I sit, quietly watching and waiting, doing laundry, dishes, and dodging this bullet sent home from school. We've quickly shipped Emma and Joe off to Aunt Bethany and Uncle Robb's house, as a form of a bubble or retreat, thus the quiet house. This quiet, though rare in our busy family of five, can be a blessing or a curse.

When Benjamin was very little, anything that resembled "quiet" usually meant he was up to something. He would disappear off into a back room, sucking his thumb, thinking, watching, and waiting. He's a calculated little man. His tiny fingers would test things. He would find the smallest cracks on any surface. Feeling fabric from around the house, he would look for a woven gem to add to his collection of comfort blankets he named his "uh-ohs." His calculations, born of pure analytics I'm sure, would lead him to place the smallest of objects neatly into the tiniest places. This one time he put a newly purchased memory card for our camera neatly and perfectly away, somewhere in Grammy's house, never to be seen again.

Loading the photos of today onto the computer from such a card, flashed my memory like a wave crashing into the pier at O.B., with such clarity it was as though Ben was instantly 2 years old again with his uh-oh in tow. Instead he's 8, has a fever, hasn't eaten, and sleeps quietly on the couch beside me. This forced quiet time has made me think. I wonder if the memories we're making right now, traveling through Emma's journey as she battles Lymphoma, will be so clear? When she's walking down the isle in the most beautiful white dress, getting ready to change her last name forever, will we flash back to when she was 10? I know I will, through a river of tears...of joy and triumph.

Lately I've been flashing from time period to time period as I struggle to cope with and understand our new life. I found old photos of the kids. First date photos of Rebecca and I. Wedding photos. As I look at the photos from the past week, I've noticed that we're starting to get comfortable. We know what the hospital looks like from all angles, every hallway, every room. We know where to get diesel now, no matter which way the one-way street is going. We know what the chemo routine is like and what to expect. This comfort, at least when viewed during these quiet times, can scare me. I don't want to get too comfortable. We were comfortable, before February 16, 2011. I don't want to forget each step, like when Emma was learning to walk as a baby. I want to learn from it. I want to hold on to it, though if I'm honest, never go back.

Emma's growing. She's maturing. Today she's not the little girl learning to walk, she's a cancer patient on a mission. She's a face of faith. I have so much to learn from her. She's wise beyond her years now. I guess it comes with the kit, though they didn't mention that in the cancer staging meeting, and trust me, I've scoured the manual. Recently, while talking with a friend at a park, I realized Emma's quickly becoming a pro. Not quite sponsored yet, but definitely swinging for the fence with her knowledge and understanding of her new stage of life. She watches us more than she used to. She listens to everything. She takes it all in, processes it, then hums a little tune. This worries me, because I'm still very angry at cancer. I don't react the same to things. I try and hold it together because we're (the parents) are supposed to. We (the dad) are supposed to handle anything and be strong, positive, and courageous. I'm so angry, I even questioned why I should capitalize "Lymphoma" in this blog. What did it do to deserve the big L? You capitalize God, not lymphoma. Boy do I have a long way to go.

I've been told that Emma's blog is open, honest, and lets our friends, family, and even those we don't yet know, into our journey with ease. I think it allows us all to know the truth. It makes sitting at a picnic table at the park, waiting for soccer practice to get over, easier. Your conversations, thoughts, and prayers help us. It truly is therapy, maybe for us all, but definitely for me. My thoughts are scattered throughout each day. The first week after Emma's diagnosis I missed exit after exit as I drove down the freeway. I struggled to find direction. As I put my thoughts to paper (screen) it becomes real. Her situation sets in. Our future, though wide open, becomes at least a thought. If I try to say any of these words out loud, I wouldn't get past the first sentence. I'll start to cry. It's still too raw. Maybe I process things slower? Maybe my imagination it too intense? Maybe my faith isn't strong enough? Maybe I haven't given it all to Him? Like Rebecca said, "Breathe In.....Hold Your Breath.....Breathe."

 

Thank you for walking with us through this journey. 

- Jon

Happy Day

Working on a Bald is Beautiful post...pictures pending :)  Emma's counts are up to 700 today, which means that she can play in her long anticipated and practiced for piano recital.  We are celebrating the little things.  She also made the local newspaper.  Will update tomorrow when we collect all the photos we need for the post.  Bald (or very short) is a new fashion statement....didn't you know?

Loomis News article:  http://theloomisnews.com/detail/176229.html

Back In....

Yesterday, Emma was scheduled for her first round of maintenance chemo and spinal tap.  Unfortunately, her ANC level (white blood cells = immunity) was a dead zero.  That meant that they could not move forward with any therapy until her numbers improved.  We were sent home until our appointment on Monday......we thought.

At 5:30 this morning, she came into our room complaining of being hot......102.4 degrees hot.

Jon and I moved through the abnormally familiar routine of calling the doctor, hearing that we should head to the hospital right away, rounding up her medical binder, loading the cell phone charger, laptop, clothing changes, toothbrushes, etc. and making the 32 mile trip to the hospital.

They are looking for signs of infection.  They are treating her with IV antibiotics.  They are monitoring her temperature, blood work and ANC levels.  We will be here a minimum of 2-3 days and possibly longer pending results of her blood cultures.

We have been here before.  In this very room.  With the same nurses.  With the same questions, instructions and warnings.  This is familiar, but not comfortable.  This is upsetting, but not devastating.  This is a setback, but not a catastrophe.  We are trying to stay positive and strong for her.

We have been noticing lately that our emotions are a bit out of sync.  Jon and I have both experienced times recently that we've been given very exciting and good news, or quite negative news involving details of our life, not related to Emma's medical diagnosis.  We have not had the usual appropriate responses to either of these situations.  We don't get overly excited, and we also don't get completely upset. I think we have to stay so stable in our emotional state for Emma's sake and continue to have to ride out unexpected situations with her condition, that normal emotional responses are dulled to a slight feeling of joy or sadness, but not to the appropriate level.  I don't know if this is a natural protective instinct that our brains default to, when one has experienced a huge amount of emotional input, or if that is God, quietly taking on the burden on our behalf. I believe it's the latter choice.  Thankfully, it's a sense of quietness and peace in the soul.  God is giving us one day at a time, one experience, one trial, and softening the volume a bit.

Because of the Lord's great love we are not consumed, for His compassions never fail.  They are new every morning.  Great is your faithfulness. 

Lamentations 3:22-23

-Rebecca

Breathe In....Hold Your Breath....Breathe

That was the command from the automated CT Scan voice the other day.  As Emma lay there, wrapped tightly in her own pink striped blanket from home, then a funny smelling highly sanitized hospital issued blanket, then a large 2 foot wide velcro strap to keep her from rolling off the narrow sliding table while she held her arms above her head, this is the voice that spoke instructions to her while the machine whirred and hummed.

Breathe In.....Hold Your Breath.....Breathe.

The machine changed settings a bit, then a large clear syringe filled with another radioactive "contrast" was slowly injected into her IV through a coiled clear tube that stretched out as the table moved into position.  Again, the booming, authoritative yet calm voice commanded...


Breathe In....Hold Your Breath....Breathe


I am a rule follower.  I guess it's due to being a first born child.  What I'm told to do, I do.  So even though I'm the helpless mom who is standing in the corner of the darkened basement CT suite, weighed down by the lead apron the tech strapped onto me, to protect me from the exact radiation levels that my child is being exposed to, my child who is still growing, my child who has yet to fully mature, my child who needs to be protected from all of this....but please by all means, shield the mother from the dangerous radiation, I breathe when the man says breathe.  If I could, I would rip off that cursed lead apron and flop my own body down on that machine and do this for her......but I can't.  All I can do is silently stand in the corner, with that apron weighing down on my shoulders, and hold her glasses and pink Danskin sweatshirt......and follow the invisible man's instructions.........

Breathe In.....Hold Your Breath......Breathe

I realized, in my following his instructions, I was acting like the mother, who feeds her baby from a spoon and opens her mouth unknowingly each time to encourage her baby to take a bite, that I was trying to help the process, or at least help Emma get through yet another scan.

These last few weeks, we have been on edge, stressed out, worried sick and worse.  It feels out of control, and just when we think we are getting the hang of this situation, something changes and we are upended again waiting for the next hard part.

We are breathing in, and holding our breath.  Waiting.

Ten minutes after this CT scan last Thursday, we had our regular clinic appointment, but this time we were to find out the results of her latest PET scan (scan to find cancer cells).  We breathed in as the door opened and we were to see one of the three pediatric oncologists.  The youngest of the three came in and nervously sat down.  We held our breath.  "The results of the scan show no new sites and the affected lymph nodes show positive signs of responding to the chemotherapy".  Good news.  Praise Jesus!  WE BREATHED.

We returned home to a comforting and delicious dinner made by a longtime friend, a gift basket of goodies from friends from our previous school, and a blooming vase of daffodils.  Breathing got easier. Thank you friends.   

Based on her current blood counts and test results, she will begin her first of 15 maintenance cycles of chemotherapy drug treatment this week on Thursday, including a spinal tap.  It will be a long day.  She is beginning to show signs of fatigue, both physically and emotionally.  I don't blame her.  I would be far more "grumpy" than she has been.  Jon calls it "chemo funk".  I guess it's just all part of the process of slowly poisoning your body, and then asking it to heal itself again and again.  I am so thankful, it's not up to us to heal her.  She is in the most caring and capable hands....the doctors and nurses, but more importantly, our Father God, the Great Physician.  

Thank you for following her story.  You are an amazing cloud of witnesses to her journey. 

-Rebecca