Update

So, I believe this is the first time EVER, but I cancelled Ella's clinic appointment and re-scheduled it for almost 2 weeks later.  Ella attended a local Theater camp and I didn't want her to miss a day.  In the back of my mind, I kept waiting for the doctor to call me and yell at me for changing it, but they never did!  Then, they went to grandma and Grandpa's for a few days of spoiling and attention that I am so grateful they get! Seeing how much they love their grandparents often reminds me of how much I love mine, and often wish they were still here to talk to. I took this shot at a rest stop on the drive up to Wisconsin.

I also love how much these two love each other!

So, clinic went well.  Ella's counts are looking good.  She is looking good and we continue to pray and monitor every little  ache and pain she has.  For the most part, she is just such a happy kid!  This past weekend, we held a Kid Olympics in our backyard with a bunch of neighborhood kids and friends.

It was a big hit.  We had 10 events and included a 3-legged race with the adults and a mom vs. dad tug of war.  We ended the night with a movie in our backyard, popcorn, and lots of blinkie lights.  I've said it before, and I'll say it again- I love our friends!

Enjoy the rest of your summer! We are!
Blessings~Katie

Loss

It feels like a time of loss in my life.  In the sign wave of life, I feel like there are different sections of ups and downs.  This is a loss time for me.  Today I had to say good-bye to my cat Cole.  A 17 year companion for me.

I don't know if you are a cat person or a dog person, most people seem to choose a side, but Cole was as close to both as he could get.  When he was younger, he would bring me the string he liked to play with and drop it at my feet.  He knew the sound of my Jeep and he would always be waiting for me at the door when I got home.  He also had this keen sense that I was sad and whenever the tears were falling, he would be by my side.  But, he was still a cat at heart. Very independent and purred louder than an airplane!  Losing another part of our family is so difficult.  Death, is not my friend.  It makes me feel uncomfortable and my heart feels a little bit emptier.  I know that we should be a peace knowing that there is a better life than here, but it is hard.  Faith, at times, can be a hard thing.  I like to believe that both Kailee (our dog that passed in October 2012) and Cole are in God's Animal Kingdom.  I hope that right now Kailee is trying to play with Cole and Cole is telling him to back off.

Ella had clinic on Tuesday.  It was a long clinic because things were not going well on the floor- which usually means kids are getting sicker or kids are not making it. When Ella's doctor came in she had a smile on her face, but I could tell that the smile on her heart had been wiped away.  This is why, this is why WE NEED A CURE!  Please, please consider walking with us, or supporting Ella in her fund raising efforts this year.  Our team name is:  Kiddos Kickin’ Cancer – RMCH.  Ella's Personal Page is: Ella Grace- Cure Search.  We have only raised $20,000 and we are trying to raise $300,000.  Kids are not treated the same as adults.  Every fundraiser I hear is for adult cancers.  Even the Relay for Life- less than 5% of the funds raised go towards Childhood Cancers.  CureSearch is the only local walk for the kids. Please consider this very family friendly walk, and maybe we can help there be less bad days on the children's floor of the hospital.

Thanks.

Blessings~Katie

7/11/2013:

I would just like to add that I think Relay for Life/American Cancer Society does a wonderful job.  My family and friends walk this walk each year in support of Ella's Aunt Carrie and Ella.  My comments were only to support Cure Search and Ella and not to minimize the Relay for Life/ACS. I have updated my link to show The Relay's most current data. 
Thanks

The normal.

HI.  Sorry for the delay in my now monthly posts!

Ella had clinic last Tuesday.  It is a different feeling for me to go knowing that she is not having chemo.  It was unusually quiet and we had some time to chat with the nurses and Ella's favorite volunteer- The Craft Lady.  She had some extra bruises on her legs, so I was a little concerned, but all is well and they are just normal every day "I'm a kid that plays" bruises.  Ella has been off of treatment for 8 months and her counts are officially back to NORMAL!  No more looking at her count sheet to see red exclamation points or the words Low or High.  Just nice black letters that say everything is in the normal range.

Ella playing with her cousin Sara.

But, what is our normal range?  Our new family "Normal" is different.  I think we have spent so much time the past few years keeping ourselves "Normal" and "Busy", that now we really have to stop, take a deep breath and figure out what this new normal will look like.  For me, I think I have been trying so hard to keep myself busy and therefore a little numb that I'm not sure what our normal is.

When Ella was diagnosed my doctor suggested a low dose anxiety/depression medication for me.  Knowing what I was about to watch my child go through, his suggestion was made to help me cope.  I also suffered with Postpartum Depression after I gave birth to both my kids, so I had a history.  Anyway, I didn't want to do it because in my eyes, that made me weak.  I needed to be strong and prove that I was strong.  But, who am I trying to prove this to and why do I care? I realized that I am a little too concerned with what others might think about me.  It is each persons decision, but I did take that prescription.  I think it kept my emotions more even during the process, but I think it numbed me a little to the normal.  Normal life does have highs and lows.  It is not all middle ground.  It is not all everything is fine.  I will have times of great strength, like signing the paperwork to add Ella to the National Cancer Registry or giving her chemo as I brush the hair off her pillow that fell out overnight.  But, I think in order to grow, we must also go through times of great weakness.  I will fail as a mom and yell at my kids for not focusing in the morning before school, I will let down a friend and hurt their feelings, I will forget to appreciate my husband, I will eat Oreo's at 9pm even though I know It's so bad for me.  Sometime the weakness makes us stronger, and sometimes it just confirms- hey, I'm human- I'm just normal.

So, I am trying to un-busy myself.  I decided to pass on the trip to Haiti this year, lessen my outside commitments, and I am going to focus this summer on enjoying a normal life with my kids.  Making some plans, but I don't want to be busy. I just want us to find a new normal.

Enjoy your summer everyone.

Ella and Sara- our two ginger girls.

Blessings~Katie

Ella's Birthday

Ella 7 years old

To say birthdays are important in our home would be an understatement.  We have learned through this journey to be grateful for every second that has been gifted to us, and this week Ella turned 7!

This is not to say that my kids don't get in trouble and no one raises their voices in this house, but it is to say that when I hear my children laughing and playing together like only siblings can, I stop and thank God for that moment and pray that is can last forever.

This year we went simple and had a few of Ella's girlfriends overnight.  They were all very well behaved and had a blast.  She has such an awesome group of girls that she just loves.  I am so very thankful that she has these bonds.  Even at school, when I dropped her off with her special birthday snack, she got teary eyed when I had to leave.  Immediately 4 little girls came over, put their arms around her and comforted her. So very amazing.  I do not remember having girlfriends like that in 1st grade.

So, Happy 7th Birthday to my amazing, strong, beautiful, encouraging and HEALTHY Ella.  We love you so much.

Josh took this one of us.

Ella's counts have been good and she has been healthy- best gift ever.

Blessings~Katie

Clinic Visit for April

Ella was in a really great mood on Tuesday.  She was being goofy for everyone- even the Doctor she had never met that did her initial vitals.  We were in and out and it was an easy day at clinic.  Her counts are looking better each time we go and she is moving in the right direction!

Aunt Carrie joined us for clinic, and right after we celebrated her 3 YEARS of Carrie being done with chemo!!!!  I took our little Cancer Butt Kickers to The Cheesecake Factory for some lunch and we went to Build A Bear to get what is hopefully Ella's last bear for a while.  She has around 50, and I seriously am out of room to put these!

In the past 2 weeks, our hospital alone has lost 3 kids to cancer.  I can not even begin to tell you how much this saddens my heart. The grief that the parents, family, doctors, nurses, and everyone involved must be feeling just brings me to tears.  The fact that Cancer has beaten not 1, but 3 more children just angers me.  I feel like there is so much attention to adult cancers, but no one wants to hear about Childhood Cancers- it's just too painful.  And that is true- It IS painful!  So, help us kick it's butt!  think about supporting Cure Search which helps to raise funds to cure and support children with cancer.

Thanks.

Blessings~Katie

Child Life

Hi All!
Ella is doing well.  I just wanted to share an article that was published by Cure Search this week featuring Megan- Ella's Child Life Specialist.  You may remember that Megan made sure Ella had a Christmas Tree in her hospital room when she was admitted on Christmas Eve, and when I could not go past the magic line when Ella had surgery, Megan jumped into the gurney and rode with her.

Ella and Megan

Cure Search is dedicated only to funding Childhood Cancers.  It is a great organization and Steve and I have been their photographers the past two years.  This year I am on the committee for the 2013 walk.  It is in September and it is very family friendly.  When our team registration is ready I will put up the link, but in the meantime, please think about walking with us or donating this year!

Thanks so much.

Blessings~Katie

Today Ella had clinic.  It was just a monthly visit where they check her counts, feel around, take her vitals and declare she is doing well and getting one month closer to "normal".  Today when we went in, Ella had a slight fever- 99.1.  The nurse asked if I took her temp before I left the house.  This rush of panic went through me.  I felt scared.  Like I had been missing something this past month.  Should I have been taking her temperature as often as I was when she was on chemo? What else did I miss? She has been complaining of back pain again, is the cancer back?  Crap.

Okay, I took a deep breath and we went into the exam room to wait for the doctor to examine Ella.  She did fine and the Dr. asked  how we were doing made some small talk, then asked if Steve and I had planned our trip to Italy yet.  I said no, she asked why.  Ella was still on the table so I was able to turn but I started crying.  I don't even know where the tears came from, they just started pooling in my eyes. I told her I just couldn't leave because I am still worried that something will happen to Ella if I leave the country.  Ahhhg.  How can I still feel this scared?  She has been off of treatment for almost 5 months, yet as her doctor was feeling the lymphoid on her neck, all I could think is that they were enlarged and she was going to turn and look at me with a concerned face and tell me she needs to run more tests.  But, she didn't.  She just kept making chit chat and taking to Ella about how much she has grown.

Seriously, when will this feeling go away?  When I stop looking at her wondering if every little ailment means something more serious is wrong. I hate feeling this way. I wish it would stop.

Ella is bummed, her ears closed up after two days without earnings.  So she will have to have them re-pierced in a few weeks.  Her cast is off and in another week she will be able to return to gymnastics class.

Ella's in here somewhere!

Last week we got lucky and had a snow storm which meant.....SNOW DAY!!!!! Friends came over and we went sledding at the side of the house and built an igloo.  Everyone had fun, it was awesome to hear the kids laughing. Afterwards we gathered in the garage for hot coco and mustache shaped cookies.  These are the days and the times I treasure.  It was a gift.  An extra day where I could listen to Josh and Ella playing together in the basement- just laughing and hanging out in their PJ's all day until I made them get dressed to go sledding.

Enjoy every unexpected minute you get with your loved ones.

Blessings~Katie