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Friday, December 31, 2010

Day 125

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

Thursday, December 30, 2010

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!


Peg information below written by Carrie Grage, Mom to Hannah Thanks!

Wednesday, December 29, 2010

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.


Tuesday, December 28, 2010

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.

Monday, December 27, 2010

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.

Sunday, December 26, 2010

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.


Friday, December 24, 2010

Christmas Prayer

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




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

Gratefully Yours,

Merry Christmas

Thursday, December 23, 2010

Days 113-117

The one good thing about Ella having cancer, is how I have seen others moved to do something generous- whether it be for Ella or for anyone who is suffering through cancer. The really cool thing, is seeing kids reach out from their hearts to do something.

Alexis, an 11yr old girl from our church decided on her own, to do a toy drive for Ella's hospital. This young girl is not only a talented singer but apparently very good at talking people into doing things! She brought in bags of toys to church last week.

Ella's 13yr old cousin Emma made the decision to cut her hair to donate to kids. Being a young girl who is in middle school, a place where every physical attribute is looked at like a bug on a telescope, she made the brave decision to chop her hair off out of love for her cousin. And Emma- it looks awesome!

Morgan, Ella's 5 yr old BFF (for you boys out there without little girls, that is BEST FRIENDS FOREVER!)cut her hair for cancer too. Gotta love this kid. She asked her mom if she could shave it all off since Ella will not have any hair soon either. Mom said- let's just cut it short. She even wore her "I Love my BFF" shirt.
I can't describe how much love and joy fills my heart knowing that Ella is so loved. We are so moved that these kids want to make a difference, and that they have parents that allow them to make these big decisions and support them. How cool is that?

We all had fun on our family mini trip. As photographers, we are so bad at remembering to bring a camera to our own family things. Steve and I got 10 minutes away and realized we forgot to bring ours. Neither of us had the energy to turn around and add the extra 20 minutes to the ride- not to mention the 3 kids in the back of the van that were already asking how long till we get there. So, Steve took some pics with his phone, but that's all we got. Ella and I did a "SPA" day in our room and made a ceramic dog that she got to paint. Josh, Jesania and Steve hung out in the water park with our niece Sara and then we went to dinner with family. It was a fun time. Ella never complained about not going into the water park with everyone else. Pretty amazing for a 4 yr old.

I can't wait for Christmas. As you might have figured, we went a little crazy this Christmas and I can't wait to see their faces on Christmas morning. Ella has been counting the day's till Jesus has his Birthday!

Blessings to everyone this Christmas. I know that I look at every laugh and smile so differently this year. I take mental pictures of everything and try to hold onto those feelings for as long as I can. Being in the moment is hard for me because I am always thinking about "What I need to do next". This year I am trying extra hard to not think ahead, and savor the time I have right now with my family.  All my life I heard adults say that kids grow to fast, and they do. But, this year, on Christmas, I am going to stop my mental clock for the day. I am going to take the time to thank God for his sacrifice, be thankful for the friends who make time for me and put up with me, be grateful for my family and the most awesome husband God could have chose for me and most of all be grateful that my best friend and my daughter are here to celebrate this holiday.

Merry Christmas Everyone.

Sunday, December 19, 2010

Day-112 Tangled in Love

Yesterday was such a fun day for Ella. Her Aunt Carrie arranged for a private showing of Tangled at our local theater.

I can't even begin to tell you how much she loves Ella and Josh, but you can probably tell just by looking at the picture of the two of them. Carrie sent out invitations and invited the girls to dress up as princesses. As you can see, that included us older princesses too!  She got there early and cleaned every seat to make sure it was safe.  She also bought Ella the Rapunzel costume and made goodie bags for everyone to take home. The kids had so much fun! Ella spent the entire day covered in glitter and wearing her dress. It was a very good day.

Now we are off to spend some time together in Wisconsin. Ella and I have packed our "Spa" stuff to do while dad, Josh , and Jes are at the water park. Looking forward to seeing our family too!


Friday, December 17, 2010

Day- 111

Conversation between Josh and I this morning while snuggling:

Mom: "I love you bubbie."
Josh: "I love you too, your the best mom ever!"
Mom: "I know. Can you please stop growing bubbie?"
Josh: "No, So I can get big and be 8- then Ella will be off treatment."
Mom: "Sniff, Sniff, I love you bubbie."

Wednesday, December 15, 2010

Day 109 & 110-Wishes

We are just hanging out and trying to stay warm. Today the weather man said "It will be warming up today, with a high of almost 20!". Gotta love Chicago!
Ella is doing well. Her skin is starting to dry out- but everyone's is in this cold weather. Her next treatment is December 27th, and this will mark the most difficult part of her treatment.  It's 2 months of about 8 drugs, bone marrow aspirations, and spinals. Plus there is a 4 day treatment when a nurse will come to the house to give her chemo and they will teach me how to do it. They said we should expect the rest of her hair to fall out by mid January, and she will be back on the steroids. I can't tell you how scared I am. I look at her and just cry spontaneously through the day- because I know what is coming. I am so grateful, that she does not.
I think the hardest part for us is that she doesn't look like our baby on steroids. I know how bad her body must ache, she couldn't even walk last time- I just wish she was through it.
Pop-Pop 1980"s ish
Have you ever wished you could make a deal with God? Maybe we all get 3 wishes to use and that's it? If the wish makes sense to God then it's a go? Well, I use to play this game in my head when I was younger. Whenever something came up, I would think "Do I use one now? Would something more important come up later that I might need it for? Would I regret it if I used it now?" In my late 20's my Grandpa, Pop-Pop, was ill and had to go to the hospital. As I sit here typing this I am staring at this awesome picture that a photography student took of him in the 80's and I am tearing up. In my eyes he was an amazing man, and not because he was rich or he had a glamorous job but, he loved my grandmother. From the time I was 16 and old enough to work, I flew out to Reno every year to visit them. I usually stayed anywhere from 4-7 days. Sometimes I'd go twice a year. I never saw anything but love come out of him. Even in his 70's he would still walk into the kitchen and smack my grandma on the tush and she would turn and look at him and say "FRESH!", then they would kiss. Anyway, When he got sick, I flew out to see him. And, I played my game, but this time I wanted to use one of my wishes. So, I asked God to trade 5 of my years here for 1 more year with him. Now, don't get me wrong, I know you can't really make deals with God but, my Grandpa passed one year later, 3 months before he was going to walk me down the aisle.

I'd like to use wish number 2 now please.


Monday, December 13, 2010

Day 108

Kids Choir! Morgan, Ella and Josh are in the front row, last 3 on the right,
 Ella had a good day today. It is SOOO cold outside- 11degrees. We did some homework and started reading a Beverly Cleary book today. She let me put her hair up in a piggie today. I know she only has a few weeks left with hair. I want to try to prepare her for that, but I don't really know how to. Her "BFF" Morgan made her a wig last week. I thought it was the sun with big golden rays, but it was a wig with long blonde hair. How sweet is that. Her BFF also asked her mom to cut her hair sure short since Ella won't have any soon anyway.

I can't tell you how much I love these kids. I worked for our church in the children's ministry for a while, and have been watching these kids grow for over 4 years. I know so many of them and have had the rare opportunity to see their hearts. Just can't even tell you how much I love these kids. It was awesome to get to spend the past few weeks with them. One of the girls didn't want to stay in the morning, so I made her my "Special Friend" for the day. She was glued to me. A few times, I looked down to realize she was still holding my hand. Anyway- Just loved it.

Tonight, Ella said she was scared to go to sleep. I snuggled with her a few times, and asked her why she was scared- She said she "just was". I asked her again, and she said she didn't want to be alone. On her wall I have hanging in a square patten pictures of her family and friends. We went through and named everyone and I told her they were all in her heart so she was never alone. That worked for about 2 minutes. Ahhh.

Our Prayers go out to our friend Katie tonight who is having surgery in the am.


Sunday, December 12, 2010

Day 107

Ella got to sing in the Children's Choir today. Yea! Can't tell you what a beautiful sound it is to hear 40 children worshiping and smiling! Ahhh. She had a good day playing with her Auntie Carrie and her Pickles.
Steve and I got to go on a loooonnngg date. We went to 10 stores, had dinner together and saw the movie RED. I'll tell ya, I don't know why but watching Bruce Willis kick some poor guys butt, made me LAUGH!  Poor Steve, I do the same thing whenever he hurts himself at home. I don't know why, I can't help it!
Good day for everyone.
I'll post pic's of the kids singing tomorrow.


Saturday, December 11, 2010

Day 106

Josh's "Tootie" certificate

Josh lost a tooth last night. "Tootie the Tooth Fairy" came to visit and left a certificate and $1 under his pillow. When Josh woke up this morning, we asked him if he found anything under his pillow, he said yes, but he wanted to wait for Ella to wake up so she could see it too. I know I'm his mom, which means my opinions are as slanted as a politician trying to get elected, but isn't he the best brother ever?

Ella had a hard time falling asleep last night and slept in again this morning. We were invited by a foundation to a kids Christmas Party today and she threw up on the way there. All over her Christmas Dress, her blankie and coat. She was still determined to go so we cleaned her up as best we could- and went anyway. The kids had fun, but for me it was a swift reminder of how fast tings can change. It left me in a funk. We haven't had her get sick in the car in such a long time, we were totally un-prepared for it. No gallon bags, no paper towels, no extra clothes. Ahrg. She and Josh got to play games at Dave and Busters and decorate cookies.

Steve and Ella at Dave and Busters

Despite the fun they had, they were both anxious to leave because we were picking up Jesania today to spend the night. Now they are snuggled on the couch watching Christmas movies, and waiting for Steve to make popcorn.

Jesania and Ella

Looking forward to tomorrow. My friend Sandi and I are running the Choir at church and I can't wait to see 40 smiling singing kids tomorrow- including my 2! Ella is so happy she gets to be there with her friends. They have been practicing every day after school. She LOVES to sing and dance.

Have a good evening.

Friday, December 10, 2010

Days 103, 104, and 105

Ella's treatments are at Loyola, they hosted a dinner and presentation this week for families who have children with cancer. I was surprised at how few families were there, but the ones that were, you knew they were willing to do anything they thought might help their children through this awful journey. The best thing that came out of that dinner for me was meeting another family with a 6 year old girl that has ALL. They are a few months ahead of us in treatment, and our paths have never crossed in clinic. I read her Caring Bridge (kinda like a blog) today, and now there is another child I'm in love with! These kids are so strong! This song just keeps going through my head:

The words "And I will find my strength in the shadow of your wings." keeps going through my head. I just picture all these little kids standing behind HIM gathering their strength to move through another day- full of faith and love.

Ella's Nurses
The next day Ella had Clinic. Her ANC was so high, they did her blood work 3 times! It was, dare I say-Normal? Her ANC was 6550. The highest it has ever been before this was 1700. Well, I am scared that her ANC is so high. I don't care what the Dr.'s tell me -I'm worried. She fell asleep during Chemo, so she must have been really tired. Today my 6:30 am early riser slept until 8:00 and took a 2 hour nap. Her temp was 98.7, but for her, that is a little high. I know, I know, but I'm just keeping an extra close eye on her! This was the largest chemo dose she has had. She gets a break for Christmas now. They are not starting the next protocol until December 27th. This will be the hardest one she will have, and it lasts 2 months. After Chemo she had her usual trip to Build A Bear, this time with Auntie Carrie. I can't tell you how much she loves these animals. They know her by name now at the store.

Ella playing with her B_A_B's

2 of her favorites

Tonight she and Josh are having a Popcorn and Movie night with there friends. They were all so excited to have a "Long" play date in their jammies. Popcorn is a food group in our family. We have special bowls and flavors for this occasion!
Rachel, Ella, Joshua, and Ryan just hanging out on popcorn night!

I found out this week that someone else I love has cancer. I just cried. I am so tired of this invisible beast hurting the people I love. Please add Jim and his family to your prayers. Jim and Karen are like parents to me and I love them dearly.
Have a great weekend. The kids are singing this Sunday at Church and I am so excited to see them up on stage!

Tuesday, December 7, 2010

Day 102

Snuggle Buddies
I kept Josh home today, just to make sure he is healthy. He asked me this morning, "Mom, do I get to be with Ella today?" As you can see, I let them play together today and have a jammie day. I hope and pray that they love each other this much even when they are 80 years old! They had a good day. Right now they are still on the couch by the Christmas tree snuggling.
Tomorrow night, the family is going to a presentation at Loyola about how to make it through Cancer. Let me re-type that....cancer. I have decided to no longer capitalize this word. Capitalizing it supplies it with too much importance. Anyway I won't be able to update until after Ella has clinic on Thursday. We are going to stay at my friends house by the hospital so Ella and I don't have to drive back and fourth late Wednesday night and early Thursday morning. Please pray that her counts are good, and that this last dose didn't send them plummeting down like last time. If they are low, then we might be deferred and have to go back again this week or early next week. I have decided not to go to our local hospital to have blood drawn unless the weather is really bad. I just don't want her to be poked more than she needs to be.


Monday, December 6, 2010

Day 101

Ella and Josh both have fevers today. Ella has been hoovering in the 99's all day, but Josh woke up at 101.4 and stayed around that for the day. So, I kept them in separate rooms today in attempt to get them both healthy. When we told Josh he was cold because he was sick, he said "Good thing I am sick". Steve asked him why, and he said it was better that he was sick instead of Ella.

Yesterday, we took Ella to church. Steve and I were trying to figure out how to go so that 1 of us could be home with Ella. I am helping with the Children's Choir at church this year, and I have been having Ella practice with Josh. She asked if she could go and sing with her friends. So, we took her and let her sit in the balcony with us. Church is family to us, and I guess I was forgetting it is for her too. I have mentioned before that I wish I could be one of those "Worship with your hands in the air" type of people. On Sunday, there was a worship song that said to raise your hands in worship. There sat our 4 year old- with her hands in the air, singing the words she picked up- to a song she didn't really know. Showing everyone how to Praise the Lord. Awesome.

Today we played with the Build a Bears and she asked to put on make-up. She snuggled all the bears around our cat and we had a Birthday Party complete with sign for her kitty named Meow Meow. She had a good day.

Sunday, December 5, 2010

Saturday, December 4, 2010

Day 99- Perspective

It did stick! I made a mental note as I fell asleep to listen for when the kids woke up this morning so I could hear their excitement over the snow. I know some people hate the snow, and don't get me wrong, after the "White Stuff" turns grey from all the cars driving through it and we have been trapped in the house for a month because it is so cold outside- it's not my favorite thing anymore either. But, a child's perspective on snow is so completely different than ours. They see it as a chance to play and build things. Josh commented all day that he really liked wearing all of his "gear", which surprised me because I can not get him to put on a hat and gloves for school to save my life!
Today was a big play day. We live on a bit of a slope so Steve and the kids spent a good part of the afternoon sledding in our yard while I took pictures and made hot coco. Ella got to go to a friends birthday party today and she was excited just to play and get a "Make Over". I might be able to get use to all this "Normalcy".

Today Josh and I went into the dentist to have our teeth cleaned.  He went first and was bummed that he didn't get to sit in the waiting room and play with his DSi. Then the tech started asking about the DSi, and why he got it. Then she kinda kept asking about why he got it. Was it his birthday or early Christmas gift? So, I told her Josh got it for being a really good big brother to his sister who is going through chemo.  I felt so bad after I said it because she said she was going to cry. Then I apologized for upsetting her. She said she was teary because she had a 4 yr. old special needs child. We were at the dentist for almost 3 hours this morning. Her son was born with only 1/3 of his brain. She told me all about him and what wonderful strides he has made, what a fighter he is. As I was sitting there, she commented to me that she hears a story like Ella's and feels like her son doesn't have it that bad. Funny, I was thinking the same thing after I heard her story. I guess it is just a matter of perspective.


Friday, December 3, 2010

Day 98

Make your own pizza night.
Ella had a good day today. She and Josh were able to have play dates tonight and we had a make your own pizza night!  Ella had really good energy all day today and played really hard tonight. She was ready to fall asleep, which was nice for me. I only had to tuck her in once!
If she is still feeling well tomorrow, she gets to go to a small birthday party tomorrow- and she is very excited. I'm just glad she has something to look forward to.

It's suppose to snow this weekend, and I hope it sticks. Thank you all for your prayers regarding Ella's fever. She was normal all day today.

Her next clinic day is Thursday. Have a good weekend everyone.


Thursday, December 2, 2010

Day 97

Ella- May 2009 Her 3rd Birthday
We were on fever watch today for Ella. Last night she had a late night temp of 100.3. It wavered all morning, and around 2 was down to 99.3. Tonight 99. So thank you all for praying for Ella. Fevers are so scary for us. We have no idea where hew counts are after this last round of chemo or how the increased dosage will effect her body. I'm just so happy that it is going away. I knew she was feeling better when she asked for pizza and popcorn with all the flavorings for dinner.

I was listening to the radio in the car this weekend, happily singing and dancing to some song on the radio. When the song was over this commercial came on that just kept saying "Your child has Leukemia". They said it about 3 or 4 times before the hospital made their point. I couldn't tell you which hospital or group it was. I was too busy telling them off. I was so angry at them for ruining my 5 minutes of normal time. I know it is for a good cause, but I am living it everyday, and when I take 5 minutes to escape it and go grocery shopping with my headphones on- I don't want to hear about it. But, that made me think. I hear about so many other deadly diseases so often, but not about childhood cancers. Maybe it is because it is too sad. Maybe we can't think about something that painful so often?

I was in the car driving home from the store when Steve called me with the Doctors news. My phone doesn't get coverage in the back of Costco, so I missed the call and the Dr. called Steve instead of me. I think that was God's way of protecting me. I don't think I could have handled that phone call in the store. I don't think I could have heard the news from anyone other than Steve. I think about that phone call often. I think about it every time I drive down Randall towards Costco. I pulled over to talk to Steve. I just remember saying "No, No, NO!"  Not my baby, not my child. But, yes. My child has Leukemia, and I don't need the radio to remind me!

Nigh Night.

Wednesday, December 1, 2010

Day 96

Ella had a good day. We played candy land and puzzles this morning. Today was a jammie day, and a good day for it because it is cold and windy out there today! She got crankie really fast tonight. I thought she might be tired but when I snuggled with her she felt warm. She is almost at 100, so we are on fever watch tonight. I think she will be find, but we still have to be careful.
We have been reading Charlotte's Web for the past few weeks at bedtime. She likes to ask lots of questions about Charlotte. Tonight she asked me if I thought the spider she saw this summer on our front porch was still there or went someplace warmer like her Grandma and Grandpa. So cute!  She is also very excited that she gets to start eating the chocolate in her advent calendar, and she is counting down the days for everything lately- when she will see Morgan, when is Rachel coming home, when is Pickles coming over. Everything is counted in nigh nights!

Nigh Night Everyone!

Tuesday, November 30, 2010

Day 95

Our French bread.....
Ella maintains her Rock Star status for today! She spent the morning playing with Pickles (Sara) and helped me make bread this afternoon. She likes punching the bread down, and eating it! She took a nap this afternoon, but then she had a hard time falling asleep tonight. I am still amazed at how well she is taking the chemo, and just in awe of how strong she is.  We have been making a lot of bread lately. I just love how the house smells when it is done!
I saw someone that I had not seen in a year today. I still haven't come up with a good way to answer the "So, what's new?" question. "Oh not much, my daughter has Cancer." That just doesn't seem like a good way to start a conversation! Oh well, I still have a few years to figure it out.
Ella has Clinic again next week. Thank you all for your continued prayers.

Monday, November 29, 2010

Day 94- Clinic

It was a long day at Clinic today, and Ella was a STAR! We arrived at 8:50am, and it took until almost noon to get her blood work back and then another hour to get her meds up from the pharmacy.There was only one nurse scheduled, so it was crazy with them juggling everyone. Ella couldn't eat or drink today because she had a spinal, so she didn't eat until almost 2pm today. So for how frustrating Clinic was today, Ella was awesome!
Ella and Dr. Manera

Today was her breakthrough day. Today, she smiled at her doctor, she didn't struggle when they accessed her port, she talked to everyone. She actually seemed a little relaxed. This time we didn't get juggled back and forth between rooms, and I think that helped. We could actually begin an activity and finish it to keep her distracted. She even sat on the procedure table and laid back by herself. She was a shining example of strength today. She even realized it was taking a while and asked "When am I getting the red dot on my finger?" There is an oxygen sensor that goes on her finger during the spinal, and she knew it was coming. She didn't even squeak when they took out her port access.  Total Rock Star today.

She had 3 chemos today. One in her spine, and 2 by IV. They upped her dosage, which we didn't think they were going to do since she bottomed out last time they did that, but they really want to push their little bodies to the limit. The Doctor said the closer to the protocol they stick- the higher success rate she has. I know this, but I don't have to like it. During her spinal today, I lost it. It is still overwhelming to me to see her like that on the table and wonder if she really will be okay. She had a little bit of a reaction to one of the drugs and it just made her face red and blotchy. Also her eyes became all red, and to me- it looked like they were teary. The red didn't bother me- it was the tears that grabbed my heart and pulled it down to my feet. To think that she is in any pain- physical or emotional just brings me to my knees. Again, I am sure she didn't feel anything, but I don't have to like it.
Ella, her sticker jewelry, and me.

There is a toy chest in the Clinic that the kids get to pick out a toy from when they come in to take home. I was talking to the nurse today and she was telling me that most of the charities that were donating have stopped. To her knowledge, there is only one left. At first I hated the idea of giving Ella something material every time she goes in, but knowing what pain and stress their little bodies go through while they are at clinic- if looking forward to a gift makes it bearable- then gift it is. So, I know everyone is overwhelmed this season with requests to give, but maybe your kids will get 2 of something- or a toy without a gift receipt. If you do, let me know and I will take it in to add to the toy chest. After Christmas if fine, these kids have a long journey.

So, this week we pray that her numbers don't tank with the added chemo and that her body will continue to be able to handle this.

Sunday, November 28, 2010

Days 88, 89, 90, 91, 92, and 93

Ella has had a really good week. She has played hard, laughed and was just a kid. A few times she and Josh just played upstairs for hours. One of their favorite pass times is taking every cushion off the 2 couches in the living room  to create some kind of fort or jumping pile. She even had a sleep over at her friends house. Her brother is so jealous that none of his "guy" friends are ready to do sleepovers yet.

We decorated the rest of the house for Christmas. We have 4 trees up now, and I am sure Comm Ed will love us this year. I wish I had a camera when Ella saw the lights outside the house last night. Her eyes got so wide and she said "How did my Daddy get the lights up on the trees!" Josh, spent the night last night in front of the Christmas Tree in the living room. I just love this time of year for them! All the innocence and wonder in their eyes. Josh said he wants a computer, I told him it was too expensive- he said "Just ask Santa to make one!" He looked at me so seriously. it's a good thing he can't read me that well yet, otherwise he totally would have caught on when I told him Santa didn't make electronics. Now I have to remember that I said that.
Dang, smart kid!
Josh and Ella

In front of the tree...

Tomorrow is clinic, and Ella is for a spinal tap to check for cancer in her Central Nervous System and to get chemo injected into her spine. She is not allowed to eat in the am, which is always hard- but she is tough. She usually has a list of demands for what items she would like to eat as soon as she is done. I can't sleep, because I know what she has to go through tomorrow, and I hate it.
Please pray that she will sleep well tonight and her counts are good tomorrow.
Josh trying to give Ella bunny ears in the pic!

Thursday, November 25, 2010

Happy Thanksgiving

As we do every year, we have so much to be thankful for. This year I am just looking at it all differently.

Happy Thanksgiving to everyone. May you feel your blessings this Thanksgiving!
~Katie, Steve, Josh and Ella Grace Van Gheem.

Monday, November 22, 2010

Day 86 & 87

Karate Party Goers!

Joshua had his Birthday Party on Sunday. Yes, It was a Karate fun filled day! Ella was well enough to participate and within the first 5 minutes she was walking around holding the hands of her 2 closest girlfriends. She was in a great mood, and you could tell she was having so much fun! Josh was wearing his new uniform with his name on it and really enjoyed being able to share his new found passion for Karate with his friends. It was really great just to watch them all running around and having fun!
Ella in a Karate Uniform :-)

Ella does not have treatment this week. She isn't sleeping well still (which means I'm not either), but that's the worst of it right now- so we are so very lucky! We plan on enjoying this week together and just hang out with friends.

We hope everyone has a blessed Thanksgiving. I know I have so much to be Thankful for! God Is Good.

Blessings to Everyone. I'll post if something is going on.
Josh practicing a kick before the Party started!

Saturday, November 20, 2010

Day 85- Monsters

I HATE the Green Eyed Monster. For me, my eyes are never greener than when I am in a room full of other women. It's one of the only times I care what I am going to look like, how much I weigh, or if I am having a good hair day. The thing is, I am not looking at the other women and judging them. I am usually just comparing their greatness to my not-so-greatness. Why do we compare ourselves to others? Why are we not happy with being who we are? Well, today I got to see my monster at its best.

Today, I ran into someone from high school. She completely caught me off guard. I think the last time I saw her was over 20 yrs. ago. A few months ago we found each other on facebook, befriended each other and left it at that. Today I took a spin class, only my second since Ella has gotten sick, so I am still getting back into my groove (yep, Katie lost her groove). This old friend was on a bike behind me and recognized me. She said hi, but I was so taken off guard that I wasn't sure what to say. I though about why I didn't say much and as soon as the class was over apologized to her for being "caught off guard".  Then as we chatted and caught up I realized I had this "Need" to let her know that I had done well in my life. I asked her about her career, but then felt this urge to make sure she knew that I had a career too. Let's just say, I'm not very proud about the rest of this conversation. I'm pretty sure I insulted her at one point without meaning to. But, as always, after reflection I realized my Monster probably had more control over the conversation than I did. I'm sure she probably didn't give me a second thought today, but I couldn't help but think about our conversation and why I felt like a 16 year old girl again.

My friend Koni and I in High School. Gotta love a good Perm!
MOST of the rest of my adult life- I have acted like an adult and left high school pretty far behind me. But, for some reason when I see or hear from someone that I went to high school with that I haven't kept in touch with I usually end up feeling like my awkward teenage self.  My 20yr. reunion was this year and I didn't go because I was at RAGBRAI, but honestly I was kinda relieved that I couldn't make it. I think I knew I would feel like I needed to prove something to everyone there, or my Monster would, and I didn't want to do that. Does anyone really care anyway? Really, I hope that everyone is happy and healthy in their life. I don't really care so much about what they do, but if they are happy doing it. And she looked pretty dang happy to me(and she looked great).

So, Monster be damned, I will continue to fight him when he pops up.  Sometimes I will fail, sometime I will succeed. But really, I just need to be happy that I am happy with my life, and be happy with the way God made me.

Steve did this quick video of Ella.  Thought you might enjoy it

P.S. Ella is doing well today and looking forward to Josh's party tomorrow!

Friday, November 19, 2010

Day 84- Unconditional Love

July 2010 at the Butterfly Exhibit celebrating Grandma's Birthday.
Unconditional Love.  It isn't something that we get to see often, but I got to see it in spades this morning around 5:30am. I think it is easier to see in animals and children then in adults, but today I got to see it in a Grandma. 
Steve's parents left for warmer weather this morning. They were here for the past 2 days to spend some time with us and go to clinic with Ella before leaving for the winter. Ella had a rough night last night, so I was curled up in her twin bed with her at 5:30 this morning when Grandma came in to say goodbye. Ella wasn't sleeping well so she got right up. Grandma was crying, and they were smiling at each other. Then Ella got up for her hug and I watched them just hold each other and whisper words of love to each other. That was it. Unconditional Love.  Nothing said besides how much they loved each other, but you could just tell by the way they looked and smiled. It was like they both just knew. Where they are, doesn't matter. Ella still knows how much she is loved. Ella stayed up and I blurry-eyed, stumbled back into my room and prayed for a few more minutes of sleep. I know the rest of the morning was filled with similar exchanges between Grandma, Grandpa, Josh and Ella. And, I am sure there were many tears that followed as they pulled out of the driveway. But, I also know without a doubt, that Ella and Josh know how much their Grandma and Grandpa love them.

Thursday, November 18, 2010

Day 83-Clinic

Ella had clinic today. Her ANC was way up so she was able to get both Chemo's today. They decided to lower the dosage of the one her body doesn't handle well, and leave her at that dosage for the remainder of this phase. I'm so torn because I want to make sure she never has to go through this again, and at the same time I don't want her to have to go through it now.
It was so hard for me not to go with her today. I know I had nothing to worry about, but I like to be in control, and when I'm not there i feel like I have even less control of this situation- if that is even possible! Ella did really well according to her clinic crew (Daddy, Grandpa, and Grandma). We always have people with us at clinic. No special reason- just for support, and that's kinda cool.
Ella after Clinic today. You can see the band-aid on her port.
Right now she is wearing a Strawberry Shortcake costume and she is curled up on the couch with all her blankies and watching a Barbie movie with Grandma. Right now, to her, her world is perfect.

I am glad Josh will have the week off from school next week. I think he needs some time to decompress. He seemed like he had fun when I brought lunch in today, but he asked me for 2 hugs and I thought he was going to cry when I left. It completely broke my heart. I almost brought him home with me, but I know that would not solve whatever the problem was. I just want him to be happy at school. Last year I can not remember a day when I picked him up that he wasn't completely happy. Now, most days he is sad, silent, or both. It's frustrating. I wish I could be a fly on the wall in his class some days. Maybe I can? I'll put a listening device in his backpack, and a microphone in the top of his pen. That way I can be with him every minute and know what was going on! Perfect! Okay...... I'll back off of the crazy overprotective mommy thoughts and just try talking to him again.


Wednesday, November 17, 2010

Day 82

Ella spent most of the day today anxiously awaiting her Grandparents arrival. She asked me to call them 2 times before 10am. Ella has clinic tomorrow with Daddy, Grandma, and Grandpa. Hopefully her ANC comes back good and she will have both Chemo's tomorrow. I am so torn because part of me wants her counts to be low so she doesn't have to get one of the drugs, but I know that defeats the purpose. AHRG!
Tomorrow I get to go to Joshua's school and take pizza in to celebrate his birthday. He is pretty excited. I know this school year has been hard. It's a new school with all new kids and he is a more reserved boy. I know he misses his old school, and so do I. But, he is adjusting and I'm just trying to do what I can to help that.

Pic of me pregnant with Ella with 2 wks to go and Josh touching my swollen belly.
Please pray that Ella will have an okay day tomorrow. Before she went to sleep she told me "I'm not going to be happy tomorrow". She usually says that the day before clinic.


Tuesday, November 16, 2010

Day 81- Ella's Half Birthday

For some reason about a week ago, Ella asked me when she would be 4 and a half. Then, she started asking everyday how many more "nigh nights" were left before her half birthday. She was so excited this morning when she woke up that TODAY was her half birthday. We made cupcakes and bug shaped brownies to celebrate the occasion.
As an adult way over the big 3 O you couldn't catch me celebrating a half birthday of my own. But for a kid birthdays, even half birthdays, are such a landmark. They show how much they have grown both physically and emotionally. When she got excited about a half birthday, I kinda did too. I also got grateful. Grateful that she is celebrating her half birthday. Grateful that she is still here. Grateful that for now, she is happy, has good energy, and is smiling everyday. I also realize how much she has changed and grown over the past 81 days. How much her little body has endured, and what an example of strength she is not just to us, but to people we do not know. Friends of friends who have given gifts, cards, and even their own blood because our child is strong enough to endure this journey.

To those of you I know, and even those I do not- thank you for all your encouraging words, cards, gifts, and blood! Thank you for following Ella on this journey and offering you prayers.

Joshua will be celebrating his 7th Birthday this weekend, and you will never guess what kind of party he is having........a Karate Party. He seemed mad today that Ella was having a half birthday. When I asked him he said he was feeling left out. I didn't, and still don't know how to reconcile this with him. I didn't know who to make him understand that celebrating Ella a little today, did not take away from his party at school, or at the Karate Class. We are trying so hard to make sure that Josh isn't left behind in this process, it just left me feeling like I am doing this wrong. But how do you do Family Cancer Survival right? There is no handbook on getting your family through this without any damage. Lord knows I would have been at Barnes and Noble to buy a few copies by Day 2. All I can do pray, do my best and pray a little more.
Ella and Steve at Ella's 4th Birthday

Monday, November 15, 2010

Day 79 and 80

With just the one dose of Chemo, Ella is holding up really well. We had school today and lots of Arts/Crafts time.
She asked me today why she can't have any play dates and why we stayed home all day. I wish she could just have a normal kid childhood. This really makes me hurt for her. I do my best and when she is well enough I let her play as much as possible. But on days like today, when she has more energy than I do and just wants to play- it is hard for her to understand that she is sick. There is a good chance she will not be able to go to Joshua's Birthday party this weekend- which makes me so sad.
Her next clinic is Thursday with daddy. If her counts are up, she will get 2 chemos and they will increase the dosage of one.
Thanks for keeping up with us, and parying for Ella.

Saturday, November 13, 2010

Day-78 Karate!

Just bragging a little. Josh got 2nd place in the Karate Tournament today!

Friday, November 12, 2010

Day -77

Hi. Ella had clinic today. She is still neutropenic and her counts were even lower today then Monday, so they only gave her one of the 2 chemo's today. They said her body just might not be metabolizing the 1 drug well. They decided not to push back her schedule since she got at least 1 of the drugs, so she goes back next week.
She is in a great mood right now. We are keeping her on the anti nausea meds just in case. She hasn't been sleeping through the night. About 1/2 way through she usually climbs into bed with us and kicks me for an hour or so, but its okay. She asked if she could put her little Christmas Tree up in her room tonight. She is excited for Christmas! Josh has his first Karate Tournament tomorrow and he is jumping out of his skin with excitement! He is such a good brother. He hugs Ella (or lets Ella hug him) everyday before he leaves for school. I know I am bias, but he has such a good heart. I am so proud of him, and proud to be his mom.
Have a good weekend all.
Blessings~ Katie

Thursday, November 11, 2010

Day 76

Ella and I had a fun day today. We went for a scavenger hunt in the forst preserve and made a wreath with the things we found. Hot glue rocks!
Ella has clinic tomorrow. Please pray that her counts are good. I'll update more tomorrow.


Day 75 Strength

Ella is doing great. We are just hanging out at home and patiently waiting for her counts to be better so she can have treatment on Friday. If her counts are not good, they will just give her 1 of the chemos instead of 2. yesterday Ella and I made 4 loaves of bread. She loves when it is time to pound them down. She kneaded her own loaf and loved playing in the flour. I think everyone is getting fresh bread this year for Christmas!

I lost it yesterday. Some carpet salesperson called and tried telling me a "friend" referred me for 2 free rooms to be cleaned. She would not let me get a word in, you know how good they are at that. After saying in my polite voice "no thank you, I'm not interested" I finally yelled "excuse me, Excuse me, EXCUSE ME- My child has cancer so NO you can't come over!" Then I hung up the phone and let it all out. Jen took me out for a drink and the most mindless (and gross) movie ever- Jackass. Just what I needed, thanks Jen.

Strength is a funny thing. When there is a crisis, I am strong without thinking about it. You just go through the motions because you know what needs to be done. When I reflect on the major times in my adult life when I needed to be strong, that seems to be the case. It is not until the event is over, and I am by myself that the scope of the situation seems to creep in and take over my emotions.Yesterday was one of those days for me.

Otherwise you can bet there is no way anyone would have been able to take me to see Jackass!


Tuesday, November 9, 2010

Day 74

Ella had lunch in our "dead" mall today with grandma and grandpa while I ran errands that I knew I wouldn't be able to run once they are gone. I hate that she is neutropenic. She could only got out if everything was cleaned, the mall was dead, they sat in a back corner, and Purell was a part of her meal! She had good energy today and was mad that grandma and grandpa left. They are snowbirds so its almost time to fly off to the south, and she knows it. She had a fun day playing with her Build a Bears and her DS.
I think I was still mad for most of the day about yesterday's waiting room experience. I know...deep breath...deep breath. Love the people, not the process.
Grandpa took these shots today!