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Sunday, August 26, 2012

Sunday August 26th, 2012- 2 years

Ella 8/27/10
Two years ago my daughter Ella was diagnosed with Leukemia. To be honest, this morning when I woke up, the last thing on my mind was the anniversary of her diagnosis. I can not believe it has been two years. There are enough thoughts and feelings swirling around my head right now, I think I could fill a book.
Ella today

Right now she is sound asleep on the couch.  She fell asleep early and we don't want to move her for fear that she will wake up and not fall back to sleep.  The past few days she has not been sleeping well- thank you higher chemo and steroids! I will be so glad when she is done. We were running low on her steroids and Steve wasn't sure if we would have enough to finish this dose.  I told him "Good, I don't want to give it to her anymore so I don't care."  We had a good 10 second stare-down before I flinched and gave in. I'm just so sick of putting this crap into her body. Come on 62 days!
Ella right now

Just one more plug for Cure Search. Please come walk with us, or help us find a cure by donating at Cure Search- Ella .Steve and I are the photographers this year for the walk, so I will be posting photos again this year. We are also hosting a bake sale at the Loyola Medical College this week to help raise funds. I hope those medical students like sweets!

Thank you all for 2 years of following us, prayers, and positive feedback.  Ella is old enough now to read all the notes you leave on here, so feel free to leave her a message.

Tuesday, August 21, 2012

Tuesday, August 21st, 2012 Clinic

Ella had clinic today.  Her counts were about 1100 and she was in a great mood.  The only time she was upset today was when our doctor had to call in another doctor to consult on a rash.  At that point there were 10 people in our little room.  Ella was laying on the table and hiding her face in my chest.  She pulled me down to her and said "Momma, there are too many people, too many people!".  I took her blankie and covered her head.  3 of them left at that point and she was much better.  She has a fungal rash ( they think) on one of her arms and a leg so now she will be on another medication to see if it helps. What's one more right?

So, September is Childhood Cancer month.  I think everyone is aware that October is Breast Cancer month, but not many realize September is dedicated to the kids.  In order to help promote awareness I am posting a series of pictures throughout the month on my Facebook sites.  Feel free to share these pictures to help everyone know that our little ones suffer too.
Feel free to let me know which one is your favorite. I will get off my little soapbox now!

Ella only has 67 days left of Chemo. She is getting really excited to go on her Make A Wish Trip in November.  She has picked a Disney Cruise and is so excited to take a limo to the airport!  Right now she is at the end of our driveway with her cousin and brother holding a lemonade stand.  They are yelling at cars and asking everyone that passes by to "Help Fight Cancer".  They did this all on their own, I only made the lemonade.
Thank you for your continues prayers and support.  Feel free to comment and let us know your favorite picture.

Sunday, August 12, 2012

Cure Search

In September of 2010 I attended my first Cure Search Walk.  Ella had just been diagnosed 11 days earlier and my head was still spinning with everything our family was attempting to comprehend.  At the walk, I listened to the words for "Black Bird" being sung in the opening ceremony and cried like a baby. I looked around at all the kids that were fighting for their lives and saw the parents standing behind them and holding them and wondered if there was any way I was going to be able to do this.

In September of 2011, I attended again, and this time I tearfully watched my friend release a balloon into the air in memory of the son that he lost.

This shouldn't happen. Please, help us make sure it stops.  Every day, 36 children are diagnosed with children's cancer – 7 of these children will not survive. Cancer is the leading cause of death by disease in children. Although the cure rate is now 78% – up by 40% in the last 20 years – it is not good enough. Our goal is a 100% cure rate.  Please consider walking or donating to help us defeat cancer.  The walk is family friendly, so bring the kids!

We thank you in advance for your support!
Cure Search Donations/Sign-up


Tuesday, August 7, 2012

Tuesday August 7th, 2012

I am just venting. I know it is only hair and it will grow back. I know there are plenty of positive things going for Ella I am just struggling with this.  Her hair is maybe 10% left.
Ella and Rachael swimming.

Today she was happy. It was take a friend to gymnastics day.  They were walking in and holding hands and she was singing.  Being a few steps ahead of me I had them wait for me at the door.  Ella stopped and looked at her reflection in the window.  I saw her physically deflate.  She stopped singing and let go of her friends hand.  She smoothed down the few pieces of thin hair that now seem to puff out- almost like they are looking for other hairs to cling to, and she just looked at me.  This is what I can't take.  I can't fix it, I can't make her not "deflate". Within 10 minutes she was fine, but it is burned into my memory that cancer sucked joy out of her today.
I know there are lots of poems that quote the things that cancer can't do. But, it is really good at making momma's feel helpless.


Saturday, August 4, 2012

Saturday August 4th- Switches

There are a few different schools of thought on ALL kids and going swimming.  One end of the spectrum says no swimming at all.  The other end has their kids in swim lessons and visiting water parks.  Steve and I have always taken a middle ground approach.  We will let her go into a pool, with several ring floaties on to keep her port above water. She can't take them off and she has to wear a hat, cover up and sunscreen.  She also must shower right after.  She also can not have any open sores or cuts on her arms and legs.  These rules about swimming have worked for us because Ella has never been a big water fan and usually screamed if anyone got water in her face- until now.
On this vacation something happened, a switch flipped inside her last night and our rules that have kept me feeling safe about her in the water no longer work.  We are visiting Grandma and Grandpa.  Their neighbor has a pool that is beautifully maintained and they never use it.  They spend most their time traveling so they have always been generous enough to let our family use it whenever we are visiting.  We have been in it for the past 5 days using all our normal rules.  Last night we decided to go for a late night swim. Since the sun wasn't out and Daddy told Ella we were all out of "moon screen" she didn't have to put sun screen, hat or cover up on.  Well, that started something.  
After being in the pool for 30 minutes, Ella asked to take her floaties off.  I gave in to the batting eyes and dimples and told her she could take them off for just a little bit.  That was it, the flip was switched in her.  She spent 10 minutes walking back in forth in the shallow end saying out loud :I'm such a happy girl!". Then, she told her Grandma "It's like I don't have cancer". I lost it when I heard that. I don't think I realized how much she craved that little bit of normalcy.  Then she asked for a pair of goggles. With small instruction from Daddy she was under water and swimming from one person to the other.  I can not tell you how many times she laughed and said "I'm such a happy girl!".  How many kids stop what they are doing to let everyone know how happy they are?  Josh and Grandma kept saying it was a miracle and her cousin Sara got back in the pool to play because everyone was smiling and having such a good time.
One of the hard things about this is finding a balance between keeping your child safe, and still letting them enjoy their life. One part of my head is screaming at me that she shouldn't be in the water all the way, and the other is crying tears of joy because she is so happy. Well, happy won.  She was in the pool and mostly under water for almost two hours.  We didn't go to bed until almost 11pm.  As soon as she woke up she wanted to get back in the pool.  Right now she is just waiting for breakfast so she can go.  This will definitely be one of my treasured memories of Ella.

Wednesday, August 1, 2012

Wednesday, August 1st. 2012

Sorry for the late post. We have been on the go since Ella finished clinic last Tuesday.  On Wednesday I left to for Iowa to do 2 days of RAGBRAI, a bike ride across the state of Iowa.  I got back Friday night, Saturday morning we volunteered with the kids and a group of friends at a food bank called Feed My Starving Children and then turned around and left for Florida.
The girls of Team Mash-Ragbrai 2012

I was nervous about leaving for RAGBRAI.  When I rode in 2009, my best friend got diagnosed with Colon Cancer when we got back.  In 2010, Ella got diagnosed when I got back.  Needless to say it was in the back of my head that something bad would happen if I rode again this year.  Now, I know that that there is nothing special about RAGBRAI, but I still was worried abut going. Everything happens in 3's right?  Anyway my team rode 90 miles the 1st day and 45 the 2nd.  It was hot, but it was nice to get away and just be Katie for a few days.  I wasn't a wife or a mom for those few days- just Katie on a bike ride with a few thousand strangers who didn't know my child has cancer.

Ella's clinic visit went well.  Her counts came  back at 1300, which is good.  She had a spinal and chemo and  she has grown AGAIN- so they had to increase her meds.  She has 2 more procedures left and 1 surgery to remove her port before the end of this journey.  As soon as we got the okay for her to travel, we decided to travel to Florida to visit Grandma and Grandpa. She is having a blast playing with her cousins and getting spoiled by everyone.  Her hair is falling out a little bit more now that they changed her meds.  The doctor said there is a chance it will not start to grow back until after she is done with chemo. Ella is not very happy about this, but I will tell you- she just doesn't seem to care or notice.  She is so fun right now and she is in such a great mood. I hope this lasts the entire trip.