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Monday, January 31, 2011

Days 154, 155, and 156

Ella had a good weekend of special time with daddy, Jes and Auntie Carrie. Joshua and I spent special time at the Field Museum in Chicago.
Josh and Maggie at the Field Museum in Chicago

We got to spend the night at the museum with one of my oldest friends(and by that I mean we have been friends since 5th grade), and her daughter. Josh and Maggie were born just weeks apart and they get along really well. It was a lot of fun and we got to sleep right next to the bears, rams, and birds.  We spent the night running around with flashlights and walkie talkies, just hanging out and chatting as Josh and Maggie ran around and played lots of hide and seek. I really recommend it as a fun learning experience!
Josh and Maggie
Ella and daddy ate popcorn, make pizza from scratch, and watched a movie. In the morning they had a special breakfast from Panera. When Josh and I got home on Saturday we turned around and left again for a birthday party and he totally fell asleep in the car. When I woke him up to ask him if he wanted to go over to a friends house to play he said "No, I miss Ella and I wanna go home and play with her.....because I love her."  he really earned so major brownie points with that one! So they played all night and as soon as they woke up on Sunday they picked up where they left off. I feel very blessed that they love each other so much.

Sunday Ella got to see Jesania and Auntie Carrie, which totally made her day! So basically, she played all weekend. Not so bad!
Yes, there are hot dogs on her head!

So, now we just pray that the week was enough time for her counts to recover so we can get this last half of Delayed Intensification over with.  We are not looking forward to tomorrow, but I know that puts Ella that much closer to being done. 636 days left.


(I Peter 5:7)  casting all your worries on him, because he cares for you.

Friday, January 28, 2011

Day 152 & 153

Ella is doing just fine these past few days. She has had TONS of energy during the day and lots of personality too. This is the first day that she has been okay without having a cover on her head. Considering that last night she cried when I put her to sleep because all she wanted was "long hair that tickled her back", I was surprise to see her run around today without anything on her head but a bow. Good day.

Yesterday hit me like a ton of bricks for some reason. The reality of it all is just harder some days that others. 638 days to go.

Have a good weekend.


Wednesday, January 26, 2011

Day 151

Today my girl is:

sipping lemonade from her favorite cup
singing a song that sounds so sweet coming from her lips
coloring with stencils
pushing books in my face to make me read to her
yelling at me to pay attention to her and get off the computer
playing with me
letting me plant gentle kisses on the top of her soft head
sitting quietly and resting
eating her third waffle with butter for the day
snuggling with her dada



Tuesday, January 25, 2011

Day 150

Bath Time!
You may not be able to tell in this picture, but she is smiling! Ella's counts were not where they needed them to be, so her treatment was deferred and she has this next week off as her body recovers. She got to come home early and have another play date, so she so a pretty happy girl.
We got some good news today. When we started this journey, the protocol they put Ella on listed another phase after this one before she would be able to begin the final and longest phase. We found out today that when this one is over, she can go right to the final phase! YEA!!!! Most likely her hair will grow back in that phase and she will only have to go in for chemo 1 x a month. She will still have to take it orally at home daily, but clinic 1 x a month- hey, not so bad!
So, we are going to take it easy for the next week, and try to mentally prepare for next Tuesday.  Thank you all for your prayers for today- and everyday!


Monday, January 24, 2011

Day 149

Ella and Rachel
I can’t tell you how happy Ella was today. Both of her neighborhood BFF’s wore bandanas on their heads today. First thing this morning Morgan came to the door before school with one on and today Ella got to play at Rachel’s for 4 hours and she and her brother had one on too.  Ella was so excited to go over to Rachel’s and play. She didn’t want to come home when I went to pick her up. She ate so much food today. Before 9 am were making fresh bread and she had eaten 3 times. Tonight she had 3 dinners and is still up and eating because she knows she can’t eat tomorrow morning.  I was so hoping that her friends wearing the bandanas would help make her hair loss easier.  Tonight I was in my room and she screamed for me. I ran into the bathroom and she was crouching in front of the bathroom vanity holding her head. When I asked her what was wrong, she said she needed her bandanna. She stayed down and wouldn’t look into the mirror until I had her du rag on her head.

This is going to be the roughest week for my baby. Not only is tomorrow full of drugs, she also has a nurse coming to the house for the 3 days after that to give her Chemo.
Tomorrow’s agenda of procedures and drugs:

Access port and draw blood samples
Possible blood transfusion
Doctor visit
Spinal Tap (no food till this is done)
Chemo into Spine
CPM Chemo for 30-60 minutes
ARAC Chemo for 15-30 minutes
TG Chemo by mouth
3 hour fluid flush

Part of me hopes her counts aren’t good so she doesn’t have to go through all of this tomorrow. The other part of me hopes they are good so she can be one day closer to getting better. For as much as I hate these drugs, I am grateful that they are fighting the cancer.  Please pray that her body holds out. 3 of tomorrows drugs are new and we have no idea how they will affect her.


Sunday, January 23, 2011

Day 147 & 148- Plus...Ella Kicks cancers Butt Video.

Ella recorded this on Thursday.

She is doing well this weekend. We took her out to eat today since she will be confined to the house for the next few weeks. Right now she and Josh are happily playing on my bed and laughing. There isn't any better sound.

This morning I cut the rest of Ella's hair. She had these few straggling pieces that kept getting in her eyes and mouth. Since there isn't much hair, they are not weighted down and they fly everywhere.  I asked her if she would like me to cut them, she said yes. When we got into the bathroom I acted very casually about it, like it was no big deal. Inside my heart was breaking. After I got one side done she was looking in the mirror and said she wanted to be done. I asked her if she just wanted to look at me instead of the mirror, she said yes. Now, she just has a few little baby hairs on the top of her head. Today they are being covered by a Tinker bell scarf.  Steve pointed out to her that she doesn't have to worry about washing her hair in the tub anymore- now she can just play. That made her smile.


Friday, January 21, 2011

Day 146

Ella had a good day today, but I feel so sad for her. She is so frustrated with her hair loss. She won't take the du rag off, even at home. I hate that at 4 years old she is self- conscious about her looks. I know there is more to it then that, I just hate that she has to go through this.

Have a good weekend.

Thursday, January 20, 2011

Day 145-Du Rag Day

Ella had a good day today. She was in a good mood and enjoyed doing her homework. We also read 2 more of the Rainbow Fairy books. Today was a purple Du Rag day, and I was told that I need to wear one everyday too.  Ella looks way cuter than I do in a du rag. She can totally pull it off! The blog is having issues loading pics and video, but I'll put some up soon. We spent the night coloring in bed and I let her stay up a little later, hoping she might actually fall asleep in her room tonight. So far so good!


Wednesday, January 19, 2011

Day 143 & 144

Ella doing Homework
Ella had a better day today. Monday night she didn't sleep. No really, she sat in our bed, asking for food and watching the Disney Channel till 4am -then Steve took over. Tuesday night she slept, so today she was in a good mood and asked to do homework for almost 2 hours today. So, side effects for her have been insomnia, cravings, bloating, mood swings, hair loss and leg weakness. Really, not too bad. Except for the hair loss, it is kinda like she is already a teenage girl!
We spent a good part of the night last night making these cute colorful head scarves for Ella. Josh even designed one for her. We pulled out glitter, glue and jewels and went to town.  It was our last night with grandma and grandpa so we hung out and got crafty! So looks like Ella and I will be wearing these for the foreseeable future. She isn't so much into hats right now, so this is a good option.

Next week will be one of the toughest for Ella. She has a long day of procedures on Tuesday and then a nurse will be coming to the house Wednesday, Thursday and Friday to give her chemo. Tuesday she has a spinal with chemo, then a new chemo that requires a 3 hour flush of IV fluids. Plus they warned us that there is a good chance that she will need a blood transfusion, which also requires a couple of hours to make sure she doesn't have a reaction. How much can her little body handle?

Please pray that her body holds up, but the Leukemia doesn't!


On My Heart

"Every tear I've cried, you hold in your hand."


Monday, January 17, 2011

Day 142

Ella had clinic with daddy, grandma and grandpa today. Since daddy had the day off, her wanted to go with. This was the quickest clinic trip ever for Ella because she didn't need chemo today- just a blood count and exam. She was off to Build A Bear by 11:00am. Steve took a few pictures today, but I'm not going to post them. She looks so unhappy, I just don't want that memory burned into any one's brain. I know it's the reality of her situation, but today I'm not in the mood for reality.  So, I'll give you this one instead. it's a picture of Josh and Ella in Myrtle Beach, Ella's favorite place.

May 2009
 I'd say today she has about 1/3 of the hair left that she had 2 days ago. She said she would like her dad to shave his head, but not until she loses all her hair. She would also like to have a pizza party to celebrate. If anyone else would like to shave their head, they are welcome to come over for pizza :-)

 When I was brushing her teeth tonight she was just staring in the mirror and she was pissed. So, we started yelling at cancer in the mirror. It made her smile. We also gave cancer a good raspberry!  Tonight she asked me to make her a purple shirt that says "Ella kicks cancers butt", she is stronger than I even realize.

She is sound asleep in our bed right now. She is happy that the weather is bad, because it means grandma and grandpa have to stay an extra day before they head back to Florida. So, she gets one extra day with her favorite playmates and I get to take a deep breath....ahhhh.


Sunday, January 16, 2011

Day 140 & 141- Loss

This morning when Ella woke up the hair from the side of her head where she was sleeping, was gone. Just gone. Little hairs littered her pillow as a reminder of how many times she tossed and turned during the night.  The back of her jammies, also covered in hair. I tried to get as much of it off of her as I could, because she was bothered that it kept getting in her mouth and eyes. She doesn't want to cut it. I think she doesn't quite understand because she thinks if we cut it now, it will keep it from getting long. All she wants is long hair.

This morning
She spent the day on the couch again. She fell asleep around 10:30 this morning in her bed for a nap. When she woke up, another pile of little hairs. We spent the afternoon reading the Rainbow Magic series, on the couch. Then around 3:30 she HAD to have a McDonalds cheeseburger, so I ran out to satisfy her craving.  She hasn't been as hungry this round of steroids. But, when she wants something, she WANTS it! I'm glad she is done with the Portillo's phase, because there is not one close to our house!
After nap
I don't know why the hair thing is so hard for me. There is just no way to not look cancer in the face ever second when the face smiling back at you looks so different because of it. It is a constant reminder that this thing is trying to take over my daughters body and I am nothing more than a mere bystander. I hate it.

Ella has clinic tomorrow, but it is only to check her counts. No chemo until next Monday. Next Monday will start the 2nd half of this part of treatment. I sooooo can't wait for this next part to be over, but I can't wait for the whole thing to be over.
Look at that beautiful smile.

Saturday, January 15, 2011

Day 138 & 139

Ella is really tired. She has had a permanent spot on the couch downstairs this week. She had a bit more energy yesterday, but it wanes. She has been napping everyday and she doesn't even want to ply with her build a bears. She just wants to "snuggle". Snuggling has become my full time job.

She is losing a lot of hair right now. This is the hard part, because she wants long hair so badly. Today we used Joshie's Karate punching pad to punch anger out on cancer. She said "I don't wanna lose my hair"- and punch, followed by "gooie gooie"- punch! Everything she doesn't like is gooie. Just like the IV pole at clinic, it's gooie too!

I just want to thank everyone who follows this blog, and cares enough to keep us with our journey. We have over 20,000 hits on this blog. To me, it;s not just a counter, but a marker of love. So, THANK YOU ALL!!!!! We are so blessed!


Wednesday, January 12, 2011

Day 137

This is not my happy girl.
Ella had another rough day today. She was just so tired and moody. One minute she would be crying because she was hungry, but couldn't tell you what she wanted to eat. Then she wouldn't be hungry anymore.  She took a nap against her will this afternoon, then asked to go to bed again this evening. This is not my happy girl. This is not my four year old who loves to sing and dance and shake her booty. This, is not fair.

I'm working on grieving and letting go. See, I had big plans for this past fall. My two beautiful children were going to be in school full time and I was going to have the days to myself. I had goals, I had plans, I had things to accomplish! Now I am working on understanding that my full time job is not just being Steve's wife and mom to Ella and Joshua, but also Ella's caretaker. This was not part of my great and grand plan for this school year, but I am learning to accept it...okay, just trying to accept it.  If you know me, you know I'm a  I'm a "doer" and not being able to do much besides cancer is killing my mojo!

If your interested in doing Relay for Life this August and joining the "CancerButtKickers" Team, let me know! We are walking in honor of Ella and my friend Carrie.


Tuesday, January 11, 2011

Day 136

Ella was really tired today. She napped and asked to go to bed at 8 tonight. Her eyes were so sunken in today and she was really pale. My girl was beat up.


Monday, January 10, 2011

Day 135-Clinic

Momma and Ella sitting in the chemo chair

Ella had clinic today. Her counts remain spectacular, and she had 2 chemo's today. Then she was off to Build-A-Bear for a bear and a new outfit. What am I going to do with all these stuffed animals? Anyone with a good idea on how to organize them- please let me know!

Grandma and Ella and her orange chemo
She is sound asleep now. Her little body was so tired tonight, but she just didn't want to close her eyes. I am grateful that her body is holding up so well, but I am grateful with my breath held in tightly. Still waiting for the other shoe to drop, for her to get really sick, or have a bad reaction. I feel like we are always on guard and fearful that something will make her sick. It is with tears in my eyes that I watch her sleep and breath and think about how strong/beautiful she is inside and out.


What is it that makes others ask for forgiveness? What happens in our lives that makes us see the way did something or someone wrong in our past. Do we get hit with some lightning bolt of intelligence? Or do we just grow up? Since this has happened to Ella 3 people from my past have asked for forgiveness for things that happened years ago. I just find it interesting how this has come about. What about her pain, makes them remember pain that they have caused? The thing is, that it isn't really me they need to ask for forgiveness from, they need to forgive themselves. I understand that it is hard to forgive ourselves, sometimes we need to hear it from others so that we can get permission to forgive ourselves. If someone us will forgive us, then certainly we can forgive ourselves....right?

Forgiveness is a choice. It's not an easy one. For me it is hardest when the person I am trying to forgive isn't asking for forgiveness.  When they feel they have done nothing wrong, or that their actions/words were somehow justified. Still, I pray, and ask God to help me forgive and try to be accountable for my own shortcomings (of which there are many). We have to choose to forgive others the same way God chose to forgive us. Sometimes its just a lot harder than others! I am definately a work in progress.


Sunday, January 9, 2011

Day 134

Just an ordinary day filled with laughter. God is good.

Clinic tomorrow.


Saturday, January 8, 2011

Day 132 & 133 Happy Feet

Happy Feet
Happy feet. These are Ella's Happy Feet that are playing on the floor with Grandma. Grandma and Grandpa came in tonight and Ella and Josh were bouncing off the walls with excitement.  At the top of her feet is the new winter coat we bought her to fit around her swollen belly. As soon as it arrived today she put it on and it has now been on for 7 hours. Ella, is having a good day.

New Belt
Josh got a new karate belt today and he was so happy. When we were in the car driving back he said out of the blue "Mom, I'm gonna work really hard to get my solid belt!". He really enjoys karate.

Ella is doing so well.  She is kicking cancers butt!

Please pray for Leann who is in the hospital on a respirator fighting a fungal infection that has spread to her brain(complication of leukemia). Her family needs our prayers. Thank you.

Have a great weekend.


Thursday, January 6, 2011

Day 130 and 131

Josh and Ella
Ella is a ROCK STAR, and not just because she likes to "shake it!".  We were able to take her off of the anti-nausea meds and she has been fine. She had a bit of a tempreture of, 100 today, but it went down to normal tonight. She is still having a difficult time sleeping, and she has been craving hot dogs again. We had to make an emergancy run to the store for hot dogs and "Cheesie Bunny Crackers". We had to get 2 boxes of cracker to make sure we didn't run out. It's funny because she is so demanding about it. Her moods are also swinging far and wide, but mostly she has been happy. Tonight she was happy just to snuggle in a chair with her brother and watch him play games, and explain them play by play to her.

Thank you all for continuing to pray for Ella and follow her journey.


Tuesday, January 4, 2011

Day 129

Ella, loves to wear her sparkly dresses

Ella and Morgan
Ella did really well today. She colored and played today and after school she got to play with Morgan. She was so excited to see Morgan's new haircut! She wanted a picture of the two of them with short hair.
She ate a lot today- 5 meals. She kept asking me "when is the next eating time today Mommy?" She has started sweating in her sleep from the steroids and wakes up a few times a night. But really, she is doing well.


Monday, January 3, 2011

Day 126, 127, and 128- Happy 2011

Ella at clinic
Happy 2011.

Ella had a very fun New Years Eve. She got to spend the night with her Auntie, Josh got to go to a kids party with neighborhood kids and mom and dad got to party with neighborhood adults! We also got to have Jesania with us for the weekend. Ella just loves her Fluffy!

So far Ella has not had a reaction to the Peg shots or the new chemo....Yea! She was pretty tired this week, but she isn't able to sleep well. Daddy took Ella to clinic today for her treatment and she doesn't need to go back until next Monday. Her counts were actually pretty good today which surprised me, but I am grateful.
Ella is looking forward to seeing her grandparents again this weekend! They are flying back to see her and go to treatment with her. I know everyone is looking forward to their visit. Her next treatment is next Monday.

Ella started losing her hair again today. I know she has been lucky to keep it as long as she has, and I am grateful, but it just is a reminder that we are stuck in "Cancer Land " for 2 more years. I was grateful that Steve was able to take her today so I had a day to do Non-cancer related things. One of the kids whose journey I have been following passed this weekend. A few more were hospitalized for fevers. When I read this, it does 2 things. 1- realize how lucky we are that Ella has only had 1 infection she had to be hospitalized for. 2- I realize what devastation this disease can do to families. I just wonder how we do two more years of this. Ahrg.