Day 125

Just wanted to wish everyone a Happy and Healthy New Year! I pray that 2011 brings everyone much happiness.
Blessings~Katie

Day 124- The Wisdom of Strawberry Shortcake

Ella and her newest Build A Bears (or dogs)

I can't stress how much I really wished I did not fully comprehend what her procedures entailed. When we got to Clinic today Ella just kept saying "I'm scared mommy, I'm scared." What do you say to that? I told her I was right there and staying by her side, but this is the time when as parents we usually get to say "Don't be scared, I'm right here!"  How on earth could I tell her not to be scared?

They did the chemo shots into her thighs today. 2 nurses came in and did them at the same time. We stayed for an additional hour to make sure she didn't have a reaction to the drug (PEG) and to go over the use of the Epi-Pen. When the nurse was talking to me, I lost it. I really try not to lose in in front of Ella. She was on my lap watching TV so she couldn't see me, but I still lost it. Maybe it's just a lack of sleep. Ella got up a total of 6 times last night between trying to go potty and not being able to feel her favorite blankie next to her. I have to keep the pen and Benadryl around for 3 weeks to make sure she doesn't have a reaction. So, I guess she will be sleeping in our room for the next few weeks.

So, we left Clinic and all Ella wanted to do was go to B-A-B. She didn't want to eat or go home- just Build A Bear. So, as I was driving, I was having the debate in my head again about material things and how I am struggling with always giving her "things" after clinic. In the van Ella and Jesania were watching Strawberry Shortcake.  As I was having this debate in my head, I heard Strawberry say the following as I pulled into the mall "You may not need it, but you deserve it".  And yes, today she definitely deserved it!  I forgot to bring her stroller so we had to carry her through the mall, to B-A-B and back out to the car. Her legs are too sore to walk right now. My right arm is going to be HUGE when she is done with this! She got a new puppy and all of it's accessories.

She was watching Aurthur when we got home today and DW (his sister) was having minor surgery. DW ain't got nothing on my Ella!

Have a Happy New Year Everyone. I am looking forward to having dinner and drinks with friends!

Blessings~Katie

Peg information below written by Carrie Grage, Mom to Hannah http://hannahgrage.blogspot.com/ Thanks!

Day 123

Ella bella

Ella did well today. same complaints- upset stomach and tonight she was getting mad that dinner was late getting to the table. "I want pizza!" was the chant heard at our house around 6pm tonight. She fell asleep early again tonight.
Clinic tomorrow. I expect it to be quick, but I don't know if they need to run her counts again. This procedure requires her to get 2 shots at the same time in both of her thigh muscles. It will not be fun.

I wish I knew how to explain to Josh about "fairness". So many times today he complained about things being fair. "Why does Ella get out of the car first?" or "Why does she get more play dates?" I feel like I have calmly explained to him so many times why things don't always seemed balanced between the 2 of them. He gets to do so many things that she just can't, but those don't seem to make it into the "It's not fair" equation. Please don't get me wrong, he has been such a good big brother, I just wish I could help him understand that what seems like "not fair" to him doesn't really come close to the 'NOT FAIR" of having cancer.

Blessings~Katie

Day 122

Ella did really well until about 3pm today, then she got really moody and had a tummy ache for the rest of the night. Until 3 she was dancing around on my bed and singing along to KLOVE (see video above complete with messy bedroom). She demanded I snuggle with her from 5-7ish and then she fell asleep at 7. We had to wake her up at to give her the night time meds. Then it took me 45 minutes to get her back to sleep. She doesn't do "down time". She won't close her eyes and rest. She stopped napping before she hit 2yrs old. I have no idea where she gets it from (insert smilie face here).
Right now she is sleeping in our room, and I am hoping to sneak her into her bed shortly. Day 2 of Delayed Intensification done. Thank God.
Thank you so much for all your prayers. I was just reflecting today on what a difference prayer can make, and I feel it has made for Ella.
Blessings~Katie

Day 121 Clinic

Meds for Ella's spinal today

Chemo drugs by IV for Ella today

Ella started Delayed Intensification today. This is the toughest part of her treatment. Her counts came back low, so the Dr. had them run a second time. The second time they came back above where she needed so they scheduled her spinal chemo and 2 IV chemo's and drugs for the day. We left around 3pm. Josh came with us today because he wanted to see what it was like. He watched them access her port and flush it. He and Aunt Carrie stayed outside the procedure room during her spinal and he got to play HOURS of his DS, which we normally do not allowed. He enjoyed beating his Aunt at racing games. When we got home he was like "WOW, All day driving and sitting at the hospital ." So, now at least he knows that Ella is not having fun all day while he is at school. We left the house at 8am today and got home at 5pm by the time we picked up her new medications.

Ella and Josh waiting for test results.

Ella fell asleep on the way home from the hospital today. I spent 45 minutes after we got home figuring out her new meds schedule and calling the pharmacy to figure out why we only got partial fills on 2 of her scripts. I am very grateful that we have insurance, but I wish it was simpler sometimes. Ella woke up and asked Josh to play Tea Party with her. They changed clothes and are currently are sipping "tea" in the playroom. He was a really good big brother today.

Ella woke up around 2am for about an hour. She just cries that she is scared, with no reason why. I don't question this much because she has every reason to be scared- I am too. So, I just laid in her bed with her, tried not to fall out and stared at the Christmas Tree in her room.  She has ornaments with pictures from every year since her 1st Christmas on her tree. I could not help but stare at her picture from last year. Her red hair in pig tails with little curls at the ends. Big smile with matching big dimples on each side- so sweet and happy.  I love watching her sleep.

My beautiful girl.

I wish I could put into words how I feel, but it all seems so selfish to me. Nothing I am feeling can possibly compare to what Ella is going through. What right do I  have to cry when she goes from a spinal to having tea? Please pray that she doesn't have a bad reaction to her new meds during the next few days. She has to go back on Thursday for another treatment. This one is 2 shots in both of her thighs and we have to carry around an Epi-pen for a week to make sure she doesn't have a bad reaction to it.

The cool thing about today, is that we got her official end date today- 10/28/12! YEA!!!!!

Thank you all for your prayers and kind words, it really makes a difference.
Blessings~Katie

Days 118-120

Our 2010 Christmas Morning Picture

Merry Christmas! We feel so blessed that Ella was in a great mood and able to really enjoy Christmas with us! She got to come to church with us, and to watch her singing and dancing to the music was AWESOME! We had such a fun Christmas Day. We opened all out gifts and hung out, then went sledding together. We finished off the day with an awesome meal that daddy made, and even had him cook it again on the 26th! Right now she is a happy little girl!

I know this is probably harder on us then on her, but she starts delayed intensification tomorrow. She has a spinal and chemo treatments tomorrow. I want to stop time so she can just stay ion this happy "zone", but I know that is beyond my mommy super powers.
So, please pray that she handles the spinal and the new chemo drugs well tomorrow. Pray that she doesn't get sick and smiles for at least a few more days.

Blessings~Katie

Christmas Prayer

Please take a moment to pray for the following kids who will be stuck in the hospital this Christmas.

Skyler: http://crystalandskyler.blogspot.com/

Noah:  http://www.caringbridge.org/visit/noahrios/journal

Amelie:  http://www.caringbridge.org/visit/ameliedejesus

If you follow the links, you can read their stories. Thank you so much.

Gratefully Yours,
Katie

Merry Christmas