New Hospital- New Hobby- Same Love

Off topic, but on my mind today...

I think going to heaven will be like having the ability to take the biggest, deepest breath you have ever taken.  I often feel like here on earth I can't take a deep breath.  The things of this world seem to weigh me down.  Too many things seem like they are pushing down on my lungs so that when they expand to take that big cleansing breath, the top of my lungs are being held and pushed down back into my body so that my lungs can't fully expand.  I look forward to taking that first cleansing deep breath when I finally get to see my Father.

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Ella had a follow up visit at clinic today, but it was a new clinic.  Her doctors moved to a new hospital in January.  I took Ella to the new hospital and she decided to stay with her doctors.  it's a hard decision.  Kids like routine- hell I like routine.  I liked knowing where I was going and what I was doing.  Recognizing others that I had met before and knowing just about how long everything would take.  Starting over at a new hospital was NEVER in my plan, but it must be in Gods plan.  Ella had to choose between new docs or new nurses.  She chose new nurses.  

So our first visit to the new hospital was yesterday.  It is a dedicated children's hospital- not just a small part of a clinic, but an entire hospital for kids.  It's nice that they are an entire facility set up for kids.  Loyola had a small part of clinic or 1 floor in a hospital.  We love our child life support at Loyola, but our favorite nurses were already gone, and we only saw the child life person once a year.  I had to go through and re-register Ella as a new patient.  I wasn't expecting me to hit me as hard as it did.  Answering questions and thinking about things that I had not had to think about in two years brought back some emotions that hit me when I wasn't expecting it.  

Josh came with us as emotional support for Ella.  Plus he didn't mind having the day off of school.  The weather was beautiful here.  65 and sunny.  He came for Ella, but whether he knows it or not- he was there for me too.  he saw my face and knew I was struggling.  He grabbed my hand and squeezed it.  He held my hand when we were walking and when I yawned and tears ran down my cheek- he asked if I was REALLY okay.  He is so in tune to my emotions- and that's a pretty big thing for an 11 year old boy.  I reassured him that I was okay.  Honestly he doesn't hold my hand very often so it was a nice treat!

We got to see both our doctors yesterday- which is a nice treat.  We also got to spend time talking to them.  It was interesting to see them in this different environment- in their new roles.  They are learning the ropes- just like we are.  I felt like seeing Ella yesterday was a deep breath for them.  Some fresh air to take in.  They love her and it is obvious.  They hug and tell her that whenever they see her.  I feel like seeing her well is a little sign that everything will be okay.  Her counts were great and she is doing fine.  She has some small things that we need to keep an eye on, but nothing we can't handle.

Ella has been doing well.  She will be turning 9 next month.  She started horseback riding in September and she loves it!  Her trainer is 21 and really good with Ella.  She lost her best friend to cancer a few years ago.  Her best friend left her horse for her when she passed. She and Ella get along really well.  It is incredible to me that she is not afraid of these giant horses at all.  She gets right in their stall and pushes them around like she is the boss- and they usually listen to her.  She had her first horse show last weekend.  She got 2 4th place ribbons and a 5th.  She didn't even care what place she got.  She just wanted the ribbons because they were pretty. She had 2- 4th place ones that are white and she wanted to get 5th place so she could have a pink one!  I love that.  She said she wasn't afraid to be in the competition at all- I was terrified for her!  She asked for a horseback riding party for her birthday this year.

Thanks for keeping up with us.  Ella is growing fast and becoming a beautiful young lady.

1st post Chemo Hair Cut

Here are the before shots

Hair.  I have asked so many times why it is important.  It shouldn't be right? It's just an outward physical thing. Why does it become such a part of our identity?  Why do we, as girls, put so much of who we are and how we feel into what our hair looks like?  I mean it can set the whole tone of your day.  Good hair day? Good day!  Bad hair day...well you get the picture.

Ella got her 1st haircut post chemo yesterday. Technically, this is only her 2nd haircut ever- unless you could the time Josh cut her hair. It was a long day.  We went to visit a new hospital in the morning.  Her doctors moved to a new hospital last month, so we went for a visit to see if it makes sense for us to move with them.  We had a nice lunch together and then did some shopping.  Every little girl who skips school has this day right? Shopping, lunch and the salon with her mom?

We have been trying to get her to agree to a haircut for about a year.  Nothing drastic, but the ends were crunchy, dry and in need of a cut.  The only problem was that the ends were all curly.  She lost her hair twice from chemo and it came back super curly.  But, the longer her hair got, the curls began to disappear. She HATED those curls when they first came in.  She would ask me to straighten it and kept saying that she didn't like it.  Then, when she was done with chemo, she liked the curls.  She gets compliments from people all the time on how beautiful her hair is.  I think she bonded a little with the curls.  They were the last obvious outward thing she had left from treatment(that anyone can see).

SO we got her hair cut.  The stylist finished cutting her hair wet and she wanted to dry it before she finished the cut.  Ella was silent the entire time.  No smiles, She wouldn't even look at me in the mirror as I hovered over the stylists shoulder.  As soon as the blow dryer went off, Ella looked at me and broke down in tears.

It too her a good 5 minutes to settle down.  The stylist walked away to give us some time.  She didn't want to tell me why she was crying.  The stylist came back and suggested a little nail polish break. She very kindly and patiently painted Ella's nails purple.  Then she finished up her hair and we went for ice cream.  She still hasn't said whether she likes her new cut.  Really- you can't tell except her curls are gone.

Ella post haircut.

I just felt helpless.  I almost wish she would just yell and scream and tell me how much it sucked to have cancer, but she says she doesn't really remember much.  I wish she could verbalize how she feels about this whole cancer thing, but she doesn't.  I always just saw it as her trusting us to do what was best, but maybe she just didn't know how to say how she really felt. She might not remember, but I think her body and mind have that information stored away for reference. God, I just love her and I don't want her to hurt for any reason at all! Haircuts are suppose to be fun.

Ella has decided to move to the new hospital to be with her doctors.  I'm a little surprised because she likes routine- but she must love them more:-) They are pretty awesome, so I can't blame her. In my eyes they are the best, because they helped saved my little girls life.

Otherwise, Ella is doing well.  She was on a heart rate monitor for three weeks this Christmas to monitor a heart rate issue, but the tests came back inconclusive.  Since her EKG and Cardio Echo came back good, we are just monitoring her now.  She had her 1st cheer competition last weekend and LOVES horseback riding.  She is so brave with these horses that just tower over her.  She has no fear.

Blessings~Katie

Hi!

September is Childhood Cancer Awareness Month, so please consider taking the pie in the face challenge to raise money and bring awareness, like Ella's medical team did above!

Ella threw pies in my face and Josh's here:

We just went on a family camping trip and Ella is doing great.

Last month she had a echo on her heart and everything looks great.  Also 2 of our friends that have been in treatment just finished!!!  We are so excited to celebrate this with them in the next week.  Yea Kennedy and Zach!

Getting ready for school to start back up.  Wish I could keep them home forever.  Remember, September is childhood Cancer Awareness Month!!!!

Blessings~Katie

Ella's 8!

I know this is late, but I am grateful to say we have been happy doing life!

Ella celebrated her 8th birthday with a Mad Hatter themed birthday party. Her girlfriends came in their party dresses and sat for tea. Tea was mostly lemonade and chocolate milk, but that's okay!

They had a blast.

We added a new member to out family:

This is Mika.  She was rescued from a shelter in Tennessee with her 5 puppies.  Her pups were all adopted and we got the best dog and companion.  

Ella is enjoying her summer. She has 4 different camps this summer and can be found snuggling in her down time.  I love this time of year.  Josh has started to ride his bike throughout the neighborhood with friends, and rides next to Steve on his morning run.  Ella and Josh are so luck to have this amazing group of friends in our neighborhood that are always around to play with.

Cool Update:

If you read my post about Ella's ENT- here is a cool "God Thing" update.  I was asking why.  Why does this happen?  So when we got home from that ENT visit, Ella took one of her bald pictures and wrote on the back "If I can kick cancers butt- so can you!".  She put it in a card and when she went in again gave it to the doctor to give to his son.  When Ella went in after her surgery a month or so later- she had a card from the ENT's son.  It was a very nice card saying how much her picture meant and a gift card to come to his restaurant in Chicago and have dinner and meet him.  So, this past week, we went to Chicago, had dinner on the river and met Mark- a cancer survivor.  He said Ella's picture and card came right at a time when he felt he couldn't do it anymore- it was perfect timing- God's perfect timing. Pretty cool hu?!!!

We are hosting a Kid Olympics next weekend and really looking forward to it!  I pray you are all having an amazing summer.

Blessings~Katie

Sharing...cuz that's what I do!

I tucked in Ella last night, and this is all I could think:

As I snuggle behind you my nose is tickled by your hair and all I can smell is you. Your 7 year old legs are wrapped around mine and your hand is holding me tightly to make sure that I don't escape your bed without you noticing. You go from crying to laughing with a second when I bring up something that makes you smile. And I think to myself and I don't want you to grow up. I want you to stay in this age forever so that snuggling-with me, is always the most important thing in your life. At that moment I am so grateful to God that you are still here on this earth that I have the opportunity to snuggle with you and smell your hair and wrap my arms around you and hold you and never wanna let you go. Tears of gratitude roll down cheeks and into your hair as I praise God for your life.

Just sharing.

Blessings~
Katie

My Joy.

Ella is doing well.  She just had her bi-monthly check up and her counts are all good!  So, just sharing a fun picture of my kiddos!

Blessings~Katie

What's the Reason?

I can't remember where I saw it this morning, probably Facebook, but I saw a post that said "something good always comes from bad. My first thought was to agree with that.  It falls along the lines of "Everything happens for a reason". Then I wondered for the millionth time what good could come from Ella getting Cancer.  Then I dismissed the thought and went back to my day.  Both kids were home sick today and have Strep Throat.  We had two doctor appointments scheduled and somehow I had to squeeze some work in there too.

Our first appointment was for Ella at the ENT.  I was just at this doctor a few weeks ago with Josh and he is now scheduled to have his tonsils removed. So, now it was Ella's turn to see if she was next.  When the doctor came in he asked Ella to hop up in the chair so he could look at her throat.  In her usual cute but shy manner, she looked and me and pushed in for security.  I helped her into the chair and explained to the doctor that she is a Cancer survivor and  every time we are at a doctor, it makes her nervous. He was good with her and she was happy that e was only looking- no pokes.  He asked me what kind of Cancer she had and how she was doing.  Then he asked something that not many people do- he asked how I was.  I gave the usual answer, but he kept talking about the hardship on the entire family. This dialog was something that came from someone with personal knowledge of this journey, so I asked him "Who do you know that has Cancer?". Turns out it is his son.  He has a throat Cancer and he diagnosed his own son.  It happened fairly recently.  We talked for 15 minutes or so about how it changes your family dynamics, and not just for the treatment period, but forever.  During our family trip to Florida for Thanksgiving I was listening to Josh and Ella play and Ella just started laughing.  I think ever adult in the room took pause and just listened for a second.  We all appreciated the fact that we still have the opportunity to enjoy her laughter.  When I left I asked for his sons name and told him I would pray for him.  His son is 30 and he said it didn't matter what age he was, he would always be his child.

So when I think about the reason Ella was diagnosed, I do not think I will ever really know in my lifetime.  But, I do know that it does give me a unique ability to be compassionate to others who will have to go through this journey.  In that sense I am now able to better equipt for serving others.

Ella has clinic this Thursday. I still get a little nervous, but I doubt that will go away- even when she is 30.

Blessings~Katie