Ella's Done

I don't know what the future holds for us at this point, but I guess nobody does.  I wish on Ella's last day of chemo I was able to go "Wow, we are done!", but truth be told I did not.  All I could do was wonder what the chances are that she will have to go through this again.  I think with something that you spend years going through, you have to spend at least that much time to feel free of it. I know this is hard to understand.  I have mentioned it to a few people and they could only say 'But your done!". But, really we are not "Done". There are scars left on this family that will never go away.  Scars on Ella's body that will fade, but never fully disappear. Friendships lost, that will never fully return.  Experiences that were missed out on and replaced with ones that nobody wants their 4 year old to go through. This is not limited to cancer, but anyone with a disease that threatens their life, or their child's life.

I know that God willing, Ella will not remember most of this journey, but it is forever ingrained in my memory and her fathers.  I pray that she will never have to go through any of this again.  I pray that there will be more research into Childhood Cancer because I do not want to meet another parent that has just learned their child has an uncertain future. I pray that all these memories will fade and be replaced by new and better ones. The one phrase that still sticks in my mind after these 2+ years is one nurse Gail said to me the first day I met her.  "No dreams should be lost for this child.". They were never lost, but they have been replaced by different ones. Ones of health and happiness.  For a childhood filled with laughter and no more needles. For her memories of this journey to only be of the wonderful people she met and how strong she really is.

I have one final video of Ella journey.  This one goes to what I hope, is the end of her cancer battle.  It was so hard to pick images for only 3 minutes, and I chose the ones that might not be the ones I like the best, but that tell her story.  As always, feel free to share this video.  Anything that helps to raise awareness is appreciated.

For those that have followed us on this journey, we Thank You.  Thank you for just being there for us and listening an praying.
Blessings~Katie, Steve, Josh & Ella.

Ella's Journey

Make A Wish

Ella and the Dolphin!

Family shot. Doesn't everyone look better in a wet suit?

Well, Ella got her Wish.  She wished for a Disney cruise and to swim with the dolphins, and that is what she did! She was so brave with the dolphin.  She went up by herself, hugged and kissed the dolphin, and then fed it cold slimy fish, and she loved every minute of it.

They loved that our room had bunk beds and a balcony.  Josh was super adventurous and tried lots of new foods.  Ella said her favorite thing was the Aqua-Duck waterside on the ship.

The first night we got there, we explored the boat, but the Ella fell asleep before dinner and Josh soon after because the woke up at 2am to catch the flight. Plus Josh was still recovering from pneumonia.  The second day we did the Dolphin Adventure and the third was a day at Disney's Island.  This was fun and relaxing.  The kids got a kick out of the swinging hammocks and built a boat out of sand with dad. The forth day we were at sea and even though the air was chilly, the pools were warm.  in the afternoon we escaped inside and caught a movie with the kids in the beautiful theater on-board the ship.  Overall, the kids had a wonderful time!

The cruise ship in sand.

Epcot

After we finished the cruise, we headed to Disney for 4 more days with grandma and grandpa.  I don't know for sure who smiled more? Grandma and Grandpa or Ella and Josh!  We hit 4 parks and the pool.  The lines were nonresistant and the even opened the new Fantasy Land Park early, so we got to go on all those rides too. Ella was a thrill seeker and went on the Tower of Terror with Josh and dad, but she knows her limits and opted out of the 2nd ride. Her favorite ride was Sorring that she and Grandma went on together 3 times!  They were two very happy girls.

I hope this ends our adventure in Leukemia/cancer land.  From now on Ella will have monthly check-ups and Steve and I will continue to count our blessings and know that we are the lucky ones in all of this.  Cancer did not beat us.  It did not kill my child, it did not destroy my family.  We win.

We are very grateful to Make A Wish for making Ella's dream come true.  I have a million pictures and it was really hard to choose which ones to post.  I leave you with one more of Ella and Josh.

Blessings, and gratitude for every comment and prayer from all of you in Blogger Land.  Thank you.
Katie

Two very happy and wonderful kids.

The Truth 365: Be the Voice for Children by Watching and Sharing this Film

 Hi Friends and Family!

I PROMISE to post Ella's Make A Wish adventure soon, but I wanted to share this video with you.  it is meant to help make our government more aware that research is needed for Childhood Cancers.  If it is too hard for you to watch, just imagine living it.  If you cant make it through, please post it on your Facebook or other Social Media to help raise awareness.  You can also go to their website and sign their petition.

Thank you.
 
Blessings~Katie

Busy Month

I feel like I need clarity.  Like I can't just catch a breath.  The past month has flown by and in the blink of an eye- Ella is one month off treatment. So I'll just write it out here and get the clarity I need.

The past 30 days have been crazy.
Ella, with a few days left in treatment, was admitted to the hospital with a fever.  A few days before Ella finished chemo we put our dog down, because she had cancer in her rear leg.  Then Ella completed her last chemo and we celebrated "No More Chemo" with our fantastic support system.  A few days later I was off to Haiti on a missions trip, where I would see first hand the things I've only heard about.  Those pictures you see on TV where they ask for money and support- they are all truth. Now I have taken those pictures myself and yearn for a way to make a difference. When I came home my son was 2 days into a fever that would last 10.  Ella had her port removed and today Josh was finally diagnosed with strep and phenomena in both lungs after 3 doctors visits.

A friend asked me the other day why it seemed like our family couldn't catch a break. I laughed it off, because so many wonderful things have happened in these busy 30 days. My Beautiful Daughter kicked cancers butt!  I was lucky enough to enjoy the companionship of a loving and faithful dog for over 10 years and come to a full realization of how much love she actually gave our family. We got to hear Ella laugh from her belly as she celebrated with her friends.  I had the rare opportunity to serve and learn and grow from the example of other adults and children who taught me a little more about how our God loves us. I also got to meet the child our family sponsors and hug her and kiss her and tell her she is loved.  And because Josh has been sick, I have been able to give him my full attention, coddle him and give him the time that I wasn't always able to give him over the past 2 1/2 years because so much needed to be centered around Ella.

So, in this crazy 30 days I guess I've kept it together- well, most the time. I've cried, I've laughed and I've grown because of all of these experiences we have had.  I always find myself praying that God will use me for his will.  Somehow, I feel like he has in the past 30 days.

I wish I had a recording of this, but can I just share with you all how awesome it has been to just watch Ella over the past 30 days!  She seems happy all the time.  She has been dancing more and singing more and just coming out with these crazy little sayings that she cracks herself up with.  This is the child that I have missed over the 794 days of treatment she had and I am so excited to see how she continues to change!

Tuesday she will have her first non-treatment check-up to see how her body is recovering.

Blessings~Katie

Tuesday November 13th, 2012- Port Removal!

Today Ella had the port removed from the left side of her chest!

We arrived promptly at 9:30 am at the hospital for surgery, than sat there until noon.  So frustrating.  Ella had not eaten and she kept saying "This is the worst day ever!"  I sent a message to our child life specialist Megan for back-up.  Ella had run through all the things we brought to keep her occupied so it was Megan to the rescue.  She came into the Pre-Op area and talked with us while Ella played her new game.  Ella started getting scared and nervous and didn't want to take the medicine that helped her relax.  Then Megan started playing I Spy with her and she even sat in the bed and rolled into the operating room with Ella because I wasn't allowed to go back that far.

Megan and Ella playing I Spy and rolling down the hall

The anesthesiologist swore she would not remember that I wasn't there, but wouldn't you know it, as soon as she got out she started hitting me in the butt and yelling that I wasn't there with her. She is too smart for those drugs.  She cried and was very upset for 45 minutes after she came out of surgery.  It took 4 grape popsicles to calm her down, and then she had to take more medicine which upset her again.  Eventually we calmed her down, changed her into her new Brave nightgown and left for home.

Ella and Daddy Pre-Surgery

A couple people have asked us if we are glad that it's "over".  Having the port removed was definitely a milestone, but Steve and I both agree that this doesn't feel like it is "over" yet.  Not because we think she will get cancer again, but because it will still play a roll in our lives for sometime still.  We are in a couples group and we are reading a book on living without Fear (Fearless by Max Lucado).  It is very timely for us right now. We still have 5 years of clinic visits and blood test results to get through before Ella is officially cured.  For us, it just doesn't feel that "over" yet.

In about 2 week, Ella will have the opportunity to go on a Disney Cruise.  It is with much gratitude that the Make A Wish foundation is giving our family this opportunity to spend together and re-bond.  I think it will also give us our first taste of "Normal" in over two years.  I am really looking forward to the 4 of us being able to just be together as a family and laughing and enjoying each others company.  My baby gets to go swimming, and I don't have to worry about the water.  I can buy fresh flowers, and have them in my home again.  I can learn to let her have a cold and wait for her body, her amazing body, to just heal itself.

Momma and Ella Post-Surgery

 Thank you again for all your prayers.

Blessings~Katie

Monday November 12th, 2012

Tomorrow Ella will have surgery to remove the port in her chest that delivered chemo into her blood stream. This was implanted into her chest right after she was diagnosed.  She is so excited to have it removed, but also a little nervous.  Tonight she said she was mad.  I asked her why.  She said that she didn't want to wear the "boy dresses" that they gave her for surgery.  She said "They are my ENEMY!!!".  So funny to me that her biggest concern is that she might have to wear a hospital gown that is not girly enough for her!

Ella after port was inserted

Looking forward to being one step closer to done.

Blessings~Katie

P.S. if your looking for more on my trip to Haiti last week, you can find it at :Haiti

We are here!

Hello!

Our team made it safely to Haiti on Saturday! 
Our flight out of O'Hare had technical "difficulties", and we were deplaned and put on another plane a few hours later.  This only gave u a few hours till our next plane, so instead of going to a hotel we spent the night in the airport.  This actually turned out to be a blessing.  The hotel refunded all of our money and it made up the difference for the amount of money we were short from shopping for supplies for SonLight!
On Saturday we took a tour of the beautiful new Son Center.  This worship center was built by volunteers and is an incredible facility were the Haitians gather to learn about God on Sundays.  After our tour we went back to our rooms to get settled and wash up.  We enjoyed a meal and worship time on the roof of the school.

On Sunday, we had the opportunity to attend Sunday School and go to service in creole.  Then we learned our assignments for the week and went for a hike through the city of Port De Paix.  I wish I had enough time to give you all the details of that journey. All I can say is that every picture you have seen on TV that every picture that you see on TV that pull on your heart strings is true.  there were pigs and dogs roaming the streets looking for food and water.  Kids had no pants and ran around in their underware.  Garbage is everywhere.  There are no police roaming the street to keep you safe.  Kids come to school with no food to eat.  It makes you wish you could do more, whatever it is- just more.

Bus we took to the small airport to get to Port DePaix

Small airplane to Port DePaix

Sleeping at the airport

Tonight we will be worshiping together and preparing our hearts for serving tomorrow.

Hotel where we are staying- Holiday Hotel

Please continue to pray for our safety and that our hearts will be willing and open to hearing what he needs us to do why we are here.

Blessings~The Team