A new normal

As we've discovered this year, nothing ever stays the same, a new normal seems to happen every few months.  This last month has been different....in a good way!

We heard the news on March 8, 2012 that our entire year of praying and hoping and fighting for led us to...."There has been a complete anatomic and metabolic response to chemotherapy."  Praise Jesus!  Her PET scan showed no signs of the Lymphoma, so we are celebrating the fact that she is in "remission" from cancer. (and will be in remission until the 5 year mark of clear scans/blood work when she can be declared "cured").  We are taking a deep breath and still letting those words sink into our life.

Emma and Joe on Splash Mountain at Disneyland

She did have an abnormal result on her ECG heart scan, so we went last week for a more in depth MUGA scan of her heart, and should know the results this week.  All in all, it's not a big deal if her heart output was effected by the chemo (Her doctors told us that if there was damage, the effect on her life would be that she would never be able to compete in competitive long distance running....well, shoot!)  I guess she'll just have to use her time in other ways......a million other choices lay before her......we are not worrying too much about this little challenge that may or may not be true.

Being brave getting an IV placed in her hand for her MUGA scan.

We've had longer stretches between appointments, which feels so freeing!  We've also had the school science fair, placed all our puppy babies in their new homes and just saw the production of Mama Mia! on stage with some dear friends.  Life has been good.

Thanks for the fun night Tina and Bailee! 

We have other friends who are still traveling on their journeys of this cancer thing...and we are not forgetting them in any way.  We are still cheering for you Emma, Jacob and Diana!  (we saw little baby Diana in the hospital a few weeks ago when Emma Kait had a fever and had to stay 6 hours for bloodwork...Diana was a toddler walking down the halls with her IV pole behind her! Yay Diana!) And, we have new fellow travelers on this road from our circle of friends....Heather (a mom from school) and Lachlan (a little boy we knew as a baby from our preschool days).  We are praying for Lachlan and Heather's healing and recovery and rehab from brain surgery from tumors. 

3rd place in the Science Fair for 5th grade!

So...what is next for Emma Kait?  Our care continues to stretch out ahead for the next five years and beyond. We start with her port removal surgery this Friday the 23rd of March.  Then we see the clinic every month for blood work until the 6 month mark when her PET scan is repeated as well as other in-depth blood work.  Then, if she has another clear scan, the visits stretch out to every 2 months for awhile, then every 3 months, then 6 months, then yearly at about the 3 year mark. 

Loved our pups but so happy they all found great homes.

We are also preparing for a family trek across the US with Jon's parents in a motorhome...to gather as a family to celebrate our brother-in-law Chris' retirement from the Air Force and to celebrate Emma's new freedom from Chemo!  It should be an adventure for sure...we are looking at traveling through 13 states in 14 days in early April. 

Thank you for continuing to keep Emma in your thoughts and prayers and for encouraging her in her next stage of life....she is more prepared than ever for the challenges that lay ahead.  All of us who were a part of her journey this past year....her year of preparation and strengthening for her adventures ahead....we can all say with great confidence and conviction....GO EMMA!

-Rebecca

Onward and Upward....

 

Wednesday Februray 8, 2012 was a day to celebrate and with help from many, we did just that.  It's hard to tell it all with words, or even with pictures as so much was communicated within hearts, but I will try.  

 The day started with Emma's whole school gathering on the front lawn to cheer her on and wave her goodbye with hugs and tears and smiling kids.

 Walking toward the hospital for what seems like the thousandth time...familiar yet uncomfortable territory. 

Waiting in the lobby for her Electrocardiogram....chemo can affect the heart....

Finally our turn

 After a short break and some lunch....we now wait again at the clinic.

 The position I was in this whole year....by her side, unable to take on the treatment myself....trying to comfort her and help her to be strong.

 Last run....

 Proud of her photo....joining the ranks of other warriors in the battle.

 A surprise limo ride home from the hospital....she couldn't believe it was for her. When we arrived home, the kids all wanted to see inside and sit in the seats....they were so happy for her and celebrated right along with Emma.

 Some welcome signs for her arrival home

 The balloon surprise....it was so awesome!  

 She read some of the notes right away....the words mean so much to her.

 Soaking it in

 That's a whole lot of love and a year's worth of fighting hard represented in those balloons!

 Letting it go

 Celebration cupcakes made by Emma Kait's namesake....Kaitlin

 Reading the words

Look hard....up in that clear blue sky....can you see?  God is here, taking the burden from us as He has this entire journey.  Those are balloons that represent so much.....

 And when we walked back into our house, after all our extended family left for the evening....this was my reminder.  WE HAVE HOPE!  

The Lord appeared to us in the past, saying "I have loved you with an everlasting love; I have drawn you with loving kindness."

Jeremiah 31:3

-Rebecca

Just a peak....

Our day is over.  We are spending time as a family and soaking in the love that was shared with Emma today through your notes of encouragement.  She loved it.  We loved it.  She had her 15th and final dose of IV chemo today and we celebrated.  I will post tomorrow and share all the photos that tell the story of today....but tonight, we rest.

Thank you for your love. 

-Rebecca

Getting There

Emma Kait- February 1, 2012

 This was Emma yesterday afternoon walking into her  43rd clinic visit.  43 appointments and each of them represents a needle access into her port for blood work, questions about how she feels, vital signs taken and scrutiny over any physical symptom she has experienced.  As I walked behind her to snap this picture, my thoughts were focused on how much she's grown up in the past year.  She is a different person.  I am again struck with how much a child grows up in a year's time and I'm amazed at the change Emma experienced.  She was a little girl last year when the scary diagnosis of Lymphoma hit us in the gut.  She wore flowers in her long hair and had the carefree outlook on life that every 10 year old child should have.  That all changed in one day.  She is now a beautiful young lady of 11 years old who wears stylish dark rimmed glasses, spunky boots and a cute pink beret over her sporty short hair.  She was listening to Taylor Swift on her ipod and asked me on the way out of the clinic, "Mom, when did you start to wear makeup?"  She is more concerned and worried about things sometimes, but also has more faith and a peace about her that is beyond understanding.  I'm so proud of her. 

Her counts were 1300....the lowest they have been in several months.  It didn't surprise me because of how hard the last round of chemo hit her...I'm imagining her body fighting harder to recover from the effects of the drugs each time she is dosed with them. 

We scheduled next week's appointment for her final dose of chemo and also discussed the next few weeks of recovery, follow-up testing (PET scan, CT scan, MRI, Echo-cardiogram, blood panels, etc) and finally scheduling the surgery to remove her port (which she wants to keep as a souvenir).  It all makes me nervous, happy, anxious, relieved and hopeful.....we are getting there.  

This is posted in the clinic as you leave.....it's a good reminder for all of us.  

-Rebecca

Hard Days

Sleeping and healing with her pal Hank

Emma has had a few hard days of feeling pretty tired, headachey and nauseous following her 14th round of chemo last week.  It's really the way I was imagining she would have been feeling the entire course of treatment, but thankfully, it has been a rarity.  I can tell she doesn't feel good when she walks around with a furrowed brow and her lips pressed together like she just tasted something gross.  She fights hard to feel good and even got dressed for school yesterday, made her lunch and rode in the car all the way to the sidewalk, and just couldn't get out of the car.  I drove her home and she promptly cuddled up on the couch and fell asleep for the next four hours....hard.  I had to remove her glasses after an hour when I realized they were making permanent indentations in her cheek and she didn't even notice. 

She wanted to try to go to school today, but I have to say, I saw the same furrowed brow and pressed together lips on the ride there, so I'm kind of waiting for the phone call.

Emma holding one of the eight new Mini Dachshund puppies.

Thankfully, we only have one more of these rounds to get through and then her little body can start to cleanse itself from all the medications and bombardment of foreign chemicals that have entered her bloodstream every three weeks for the last year.  I'm so looking forward to that.....I can't imagine how much more she is looking forward to feeling back to her self again.  Thank you for continuing to hold her up in prayer.  She needs it now, just as much as in the beginning.  This little traveler is getting weary on her journey.

At the BMX Nationals in Reno, Nevada with her brothers and Dad

In case you missed out on the email or Facebook invitation, we are planning a low key, but personal and meaningful celebration for Emma Kait on her final day of chemo...February 8, 2012.  We are going to surprise her with helium balloons filling her room when she returns home.  We hope to have notes of encouragement from many of her supporters tied to the strings of the balloons.  We will then remove the notes, before releasing the balloons into the air, marking an end to a very long and difficult year for our family.  If you would like to send a note to her, please email it to rebecca3kids@hotmail.com and we will print it and attach it to a white, silver or pink balloon.  Thank you so much for your love, support and cheering her on!  We have not traveled this road alone.

At the Keaton Raphael Memorial Foundation Christmas Party-December 2011

-Rebecca

30 Days

This past Tuesday was another milestone in Emma's treatment....January 10, 2012.  That day marked the 30 day countdown until her last clinical dose of chemotherapy and the celebration of the end of her formal treatment of stage 3 Anaplastic Large Cell Lymphoma.  I can still barely believe that this was part of our life.  I can hardly wait to celebrate with her that huge accomplishment.....the fact that she had cancer and she beat it.  Cancer....my child....faced it head on and with so much grace.  She stayed strong and brave and courageous through countless needle sticks and tests and machines and hospital stays and appointments and losing her hair and gaining weight and  headaches and vomiting and sleepless nights and swallowing pills and and mood swings and disappointments.  We can also look back and celebrate the support that was shown, the love that was showered upon us, the generosity that was given and the prayers that were offered....all on her behalf.

In a way she was blessed because she got sick. Not blessed to be sick, but blessed in spite of being sick.  She got a glimpse into the ability of humans to show deep kindness and love to one another, love to her as an individual, love for Emma Kait.  What a gift to be given at the young age of 10.  If only all kids could have the opportunity to know and see how much they are loved and supported by their family and community.....it was wonderful for her and we will never forget it.

A year ago we were in the hospital room in Roseville thinking she had a mysterious staph infection that wouldn't respond to antibiotics. We now sit on the brink of finishing 15 rounds of chemotherapy and countless physical hurdles.  It's simply amazing how fast this year has gone by for us.  Partly it's been a blur due to just taking one day at a time and not being able to look around and take in the surrounding details.  It's also been a year full of forced rest and bonding as a family and redirected priorities.  Sometimes the things that shake us the most, cause us to move into the directions we need most....our families, our friends, our community and our Lord.  If only we could get there without such trying circumstances....but maybe that's not the way God works all the time.  Sometimes He whispers to us, and sometimes He allows challenges to remind us that we are not in control, but we are being carried and cared for in every detail of our life by One stronger and larger than any hurdle put in our path. 

Thank you dear friends for being a part of this story....Emma Kait's journey......all of our journey of increasing faith.

The Lord directs our steps, so why try to understand everything along the way?

-Proverbs 20:24 

I know the Lord is always with me.  I will not be shaken, for He is right beside me. 

 -Psalm 16:8

The Lord gives His people strength. 

The Lord blesses them with peace. 

-Psalm 29:11

Even there your hand will guide me, your right hand will hold me fast. 

-Psalm 139:10 

-Rebecca

Thoughts and words from Emma

***Updated photos at the end of post.....


Hi everybody. I am doing pretty well. I am just getting past my sleepy/head achy stage of my chemo round. So when I go back to school I will be in tip-top shape:) School is going awesome!! I love my teacher. He explains things very well and digs deeper into the subject. I am soooooo exited that I only have two chemos left!!  We have two mini dachshunds. We have a 1 year old boy Hank and a 4 year old girl Ellie.  Ellie is pregnant! Like the rest of my family I am waiting. . . and waiting for the puppies to come. She is absolutely huge!! We think she will have three-four puppies. My mom and dad say we can't keep any. They think three dogs is enough so we will find good homes for them. I have been measuring Ellie's belly and it is growing! I think she is at her max which is 23 1/2 inches round.

Ellie and Hank sleeping

 

School is going to be here sooner then we know, but I am VERY thankful that I have no HOMEWORK!! On New Year's Eve my family and I were brainstorming on what we wanted to do in the new year. My ideas were: read one book a month, fix "the 70" so I can ride it ( which is a motorcycle), and join swim team. I also want to go back to soccer and dance. . . FINALLY! I know that is kinda a long list but this year I have missed some things I love to do! We have a lot of trips and tasks ahead of us in the new year,  but at the same time  FULL of fun!!

Hank loves Ellie

Emma Kait 

Ellie with her puppies

Eight puppies total arrived Friday 1-6-11 all healthy and strong after 12 hours of labor!