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Friday, April 29, 2011

Friday April 29th, 2011

Noah and his dad Will at the Cure Search Walk in October 2010.
Earlier this week, a friend asked me if this happening to Ella has brought me closer to God. I paused for a moment before I answered her. I considered saying "Yes", because I think that is what she expected me to say. I wish the answer was yes. I wish I was strong enough in my faith to say that my walk has grown so much stronger and that I am so filled with faith that it overflows into everything that I do. The truth is that I feel less close. Don't misunderstand,at times I can feel his hands holding my family- my child, but it doesn't leave me feeling closer on days like yesterday.

Yesterday at 5:24pm, Noah Rios lost his battle with cancer. Noah is the first "cancer" child I saw at Loyola. The nurses were transferring us to a room and there was Noah sitting on his bed, door wide open, without a stitch of hair on his head. I remember Steve and I looking at each other and thinking "Okay, this is what we are in for".  I found out later that night that I knew Noah's dad, and he was kind enough to fill me in on what to "expect" as the parent of a cancer child.

I can tell you that I don't think I ever saw this child without a smile on his face. That right there tells me that God is near, but at the same time I couldn't help but kneal down by Ella's bed last night, hold her hand a heave uncontrollable tears quietly out of my body for Will and Becky's loss, and for the possibility that Steve and I could someday be in their position.  What did they say to Noah's 3 brothers? What would we say to Josh? How do you not scream in anger at the world at the top of your lungs when you lose your child? How to you move forward? How then, do you not question God?

It goes without saying that no parent should have to watch their child die. No parent should be asked to administer drugs to their child that they know, can have long term side effects including: pain, loss of muscle, learning disabilities, bed wetting, liver damage, kidney damage, nervous system damage, sterilization, dental issues, heart problems, and immune system issues. No parent should watch their child go through all this, and for Noah- so much more to simply to lose the battle.

Much Love to the Rios family, and many prayers. I can not even imagine what they are feeling or thinking at this time, but I do know that Noah touched many peoples lives both directly and indirectly. That includes this family and everyone that I know that prayed for Noah, and continues to pray for the Rios family.


Monday, April 25, 2011

Monday April 25th, 2011

Happy Easter. I hope you and your families were able to take a step back from the hassle and bustle of everyday life, enjoy your time, and gave thanks for the blessings the Lord has given us by sacrificing his son.

Ella had a good week. She was tired easily this week and she is having some bowel issues, but overall she is still doing really well. We were able to head up to Wisconsin to spend time with family and Josh and Ella were so excited to play with their cousins this weekend. I love when they are all disconnected and just playing and laughing. Still no better sound in the world then children laughing in my opinion. I also realized how much I missed my nieces, and how much they have grown!  It's so cool to watch them all play together, and watch the older girls kinda guide and love on Josh and Ella. I just love it. It was a very happy Easter.

We are looking forward to a quieter week. Ella went to sleep last night because I told her gymnastics class would come sooner if she went to sleep. Today she insisted on purple hair for the day- so we sprayed it purple. It was a big day because she went out in public without her bandanna! She finally has enough hair to feel confident without anything on her head. I'm so happy for her.

Blogger is having a problem uploading pictures, so I'll try again tomorrow.
I hope you all have a great week. It finally looks like spring in our front yard!

Monday, April 18, 2011

Monday April 18th, 2011- You've got to laugh.

The remainder of Ella's trip was good. She really started to miss her Dada, and was pretty eager to come home. We got to the airport with plenty of time before our flight. Grandma and Grandpa dropped us off at the gate and waited until the flight was marked "departed" before heading 1 hour back to their house.  They loaded us on the plane and the woman who was walking on the plane in front of us dropped her suitcase on Ella. She just started crying, and since this happened at the front of the plane and we were sitting in the back, the people sitting by us just thought she was crying. I saw the eyes roll and knew this wasn't going to go well.

We sat on the plane with ground air for the first 30 minutes or so. It was about 90 degrees outside so it was really hot on the plane. They backed the plane away from the gate and as soon as they turned on the motors, the computers shut down. We sat for a bit and they told us we had to go back to the gate for a repair. After about an hour they pushed back again, and the same thing happened- computers shut down, and no air. So we sat on the plane and they announced they were pushing us back to the gate so we could go back into the terminal.

At this point it is 9pm. Ella needs to use the restroom. They told us to stay close to the gate, so we bee lined it to the bathroom. At this point I'm a sweaty mess and carrying my laptop, Ella's carry-on, and Ella through the terminal. We get into the stall and I yank the protective seat cover off the wall- it rips. So I take the 2 separate halves and place it on the seat for Ella. When she is done, I figure I better go since I have no idea when we will be getting back on the plane. We quick clean our hands and go back to the terminal. The desk was swarmed with people, so I decided to stand more toward the entry way of the gate so I could keep an eye on the desk without being in the middle of the mob. I must have been standing there for a half hour trying to decipher the announcements, which if you have traveled a discount airline lately you will know it is like listening to a radio station that you are losing signal on. Then Ella asked for her Dada again, so I call him so they can talk. I bend down to hand Ella the phone and I hear "crinkle crinkle". With a horrified look on my face I reached behind me to discover that half of the torn seat cover was stuck to my backside. Like a cheetah I reached around and attempted to seamlessly pull it off of my skin. When I did this it managed to rip, leaving the lower half still stuck to my backside. So, we go back into the restroom with Ella protesting all the way saying "I don't need to go!", with me explaining that I do.  You just have to laugh at this point, because crying won't help! I don't know how many people saw the set cover sticking out of my pants, but none of them said a thing! AHRG!  They ended up cancelling our flight at 11pm and Steve's parents came back to pick us up. We ended up flying out the next afternoon on a different flight. It was a very long night!

Healthwise Ella seems to be doing fine. Thank you all for praying for Noah. he is FINALLY home!
Have a good week.

Monday, April 11, 2011

Monday April 11th, 2011

Ella had clinic on Tuesday. Her counts were good, which made me feel better about bringing her to Florida. We also got to deliver posters for the kids finishing chemo- which the nurses loved! That was lots of fun.  Ella was able to receive her chemo and her regimen it is to stay the same for the next month. She doesn't go back in until the beginning of May. This time chemo hit her a little harder.  She was pretty tired and cranky for the next few days. She is also back on steroids (which ended on Saturday), so being cranky, moody AND hungry all week= no fun for Ella.
Our flight out of Chicago went very smoothly, except for the almost 2 hour delay getting out of O'Hare. I was very grateful that security didn't ask her to take off her bandanna- and so was she. Once we boarded the plane, the 2 woman behind us spent the majority of the flight discussing the people in their lives that have been touched by cancer. I am assuming that they saw Ella and this sparked their almost 3 hour conversation. I know it is rude, but I so badly wanted to ask them if they could PLEASE talk about something else. This trip was to get away from our reality of cancer and I really had no desire to know how many more people are affected by this "cancer". So, I stuck my nose in my book and Ella played her DS and I tried to take my mind off of it. It is amazing how well you can hear the people behind you on a plane.
Smile like this.....
 This is the face of a very happy girl. She has been to the beach, gone to the movies, played, snuggled, played some more, had a daily full belly laugh, eaten yummy food, gotten new clothes, books, and the 3 girls got matching shoes and pedicures today. I called it spoiling, but I don't really mean it and I know Ella is grateful for every little thing. If she just expected this, and we gave her all this attention because she demanded it, that I think would be spoiling. But, she doesn't expect anything and she is just so happy. I think seeing her be that happy makes me want to do more things that make her just smile like that.

Matching Pedi's and shoes that sparkle.
 We leave here on Wednesday, and we both miss Josh and Steve pretty bad. We are looking forward to coming back when everyone can be here together later in the year. I am pretty sure that Ella wants to go to the beach one more time before we go, and I am sure Grandpa and Grandma will oblige.

If you have been praying for Ella, thank you. Also, her buddy Noah is now 26 days in the hospital. Please continue to pray for him and his family.


Monday, April 4, 2011

Monday April 4th, 2011

You will notice a certain lack of pictures for this weeks post, because we were too busy just having fun! Josh was off of school for Spring Break, so we had movies days, bounce house, play dates, overnight at a hotel, Woodfield Mall, and bowling to wrap up the week. While the boys got to swim at the hotel, Ella and I did a spa day. By that I mean I painted her fingers and toes while she watched Sponge Bob and drank milk.
We also went to Woodfield to buy an Easter Dress and a new Build A Bear. She is so excited that her Birthday Party is going to be there next month. The staff there is really sweet and they all recognize her when she comes in. Health wise we managed to stay healthy when it seemed like everyone we knew had a cold at the beginning of the week. Thank God! It is so hard to balance my desire for her to have a fun normal life, with my desire for her to not get sick. I can't tell you how much hand washing and Purell we use on a daily basis!

The one thing that was missing from our week was Jesania. Half her family was sick, and she wasn't feeling well so she wasn't able to come spend the week with us. If you don't know who Jes is, she and I have been in Big Brothers, Big Sisters together for over 7 years now. She has become part of our family, and has her own room at our house. 

The reason it was super hard to not have her here this week is because we recently found out her family is moving to Texas. While I want to be happy for them, my heart is so saddened and broken that I will miss out on the rest of her life. I have not had the heart to tell Josh and Ella yet, mostly because I don't know how to. They look at her like she is a sister.  Every time they walk past her doorway they make a comment about their "Fluff Fluff". She will be here until school is done this year, and then she is off to start High School in Texas. 
Jesania's empty room
Jes just picked out this color for her room, and the comforter. We spent a good part of Christmas Break getting the room painted and finished. I know she will always be a part of our lives, even in Texas.

Ella has clinic tomorrow.  If her counts are good, we leave for Florida this week to see Grandma and Grandpa! As long as she doesn't have a hidden lingering cold, her counts should be ok.  The chemo she is on right now is not "suppose to" have a huge effect on her counts.  So, we are hoping it doesn't. I am nervous about flying with Ella. Getting her through security with a piece of metal in her chest, and a bag full of meds (pills and liquid)....just not looking forward to it. Let me assure you, if a security guard gives her a hard time, this momma bear is going to show her claws! I also hope she doesn't have to take her bandanna off to walk through security. She is still so self conscious without it on.  I know- deep breath and worry about it when I get there!

Tonight some very talented and crafty ladies from my church are helping me make posters for the kids at Loyola. When they are finished with Chemo they don't have anything at the hospital to help them celebrate. So we are making "NO MORE CHEMO" posters for the nurses to hang up. Thank You Ladies!

Have a Happy and Healthy week!