Day 36- Round 2

Ella and Daddy

Ella started her new round of Chemo today. She, daddy and grandma went to clinic this morning. It went smoothly and they were on the road right around lunch (Portillo's hot dog). She had a spinal that delivers chemo to protect her brain, IV chemo and new for this round- a chemo pill that we give to her at home. Grandpa commented tonight how our family now throws around a spinal procedure like it it no big deal- she has 3 this month. 1 down, 2 more to go. Can I tell you how much it bothers me that we have to administer drugs to her that I know are going to make her sick. It bothers me. For as much as I hate what the chemo is doing to her body- not to mention the possible long term effect, I am grateful that it is killing off the cancer.

Ella in Recovery after her procedure.

I know that they tell me there isn't anything I did that could have caused her to have cancer. But today, when left to my own thoughts- I retraced my pregnancy with her. Every time I had to go in to get monitored because I just knew something wasn't right, what I ate, any medications I took, were my pregnancy pants too tight, was my job too stressful for the baby? Did I do something wrong after she was born? Did I use a toxic chemical around her? Should I not have polished her nails at age 2?  Should I not have been praying for God to teach me patience? And everyone has told me "This isn't anything you did, it just happened", but I am really struggling with this as an answer. I hate that I will never really know why this happened to Ella. I am trying my hardest to take a deep breath and know that God has a plan for Ella and that he will protect her. But, what if she is in the 10% that don't come out of this okay? What if the chemo doesn't keep working in her body, WHAT IF?
Day 36 sounds like a long time, but her total treatment is over 700 days. Makes 36 sound like nothing. I'm glad she is a hell of a lot stronger than I am right now.

Nighty Night. Katie

Day 35- Good News!

Yea! Ella is officially now a Low Risk, Rapid Responder! It doesn't change the fact that her treatment will be 2+ years, but it means it will not be as strong. Praise God and thank you all for praying so much for Ella and our family.
She continued to be in a good mood this morning and decided to decorate the house for my birthday with streamers- she loves streamers. So now most of the tables, footstool, and my bed have streamers on them.

So happy to see my little Tinker smiling again. Tomorrow she has a spinal chemo injection and IV chemo. Then for the next 28 days she has to take an oral chemo and get spinals weekly. I can only think about her treatment a month at a time. It is too overwhelming to think about the two years we have left- baby steps right?  Daddy and grandma are taking her to clinic tomorrow, and mommy will have 1/2 a day off. I think I will sleep, no- maybe sleep, wait- I've got it....SLEEP!
Have a good night, get some sleep. K

Day 34- My Birthday

I was really hoping that we would hear back today about Ella's bone marrow test. I thought that would be the best gift ever- that she was a Rapid Responder for sure and her treatment wouldn't be as strong, but we never heard a thing. Actually, the best gift ever would have been waking up this morning and realizing that I've had a month long bad dream and that my little girl was in bed with us because she was being sneaky- not because she felt like crap (or in her words poopie!). I have to say the best part about today was the morning- Ella laughed SO MUCH this morning. I recorded it on my cell phone so I could hear her whenever I needed to. She was even laughing today when she heard it.
We tried to go out to eat for dinner, but if you know me, you know- they always mess up my order. Tonight was no different. We ended up getting the entire meal comped- which was fine, but I would have much rather have paid for the meal and NOT have spent 2 hours in Claim Jumpers. Ella was exhausted after 1 hour, and just wanted to go home. I told Steve we are having a birthday do-over at a later date.

Steve is taking Ella to treatment on Thursday. This will be his first time. I need another set of eyes and ears. Every time we have been in the clinic for treatment- there has been some kind of issue. I like the staff- but I don't want Ella (or me) to have to listen to the staff fight with the labs to get her meds right- or be delayed an hour because they can't find equipment.  This process is stressful enough on us as a family. These little things are starting to make a big difference.
So for today- I am grateful to all my friend for remembering my birthday- which seems so very un-important to me right now- but I am grateful for everyone who let me know that I am important to them. Thank you my friends. You are such a blessing to me.
Tonight- please pray not only for Ella, but for Every child and their family that has to go through this journey.
Blessings,K

Day 33

Ella had a really good day today. She was in a good mood this am and Morgan had her laughing all morning on the way to school. I can not tell you how happy I was to hear her laugh today- belly laugh. Poop talk made her crack up! So- poop it is!
She did her school work and had a decent appetite- and no fever! YEA! Tomorrow we are picking up grandma for a little visit and if everything goes well, we are going out to dinner as a family. Fingers crossed.
Josh had Karate tonight and got his white belt and a stripe. He really likes it, and he had been unusually aggressive this past month. I might just be hyper sensitive about my children right now, but I do want to make it sure we all make it out of this in one piece. As whole as possible, but I know we are all forever changed.

Thursday Ella will have another spinal. hopefully we will find out tomorrow whether or Not Ella is officially a Rapid Responder!

Again, thank you to everyone for your prayers, gifts, emails and cards.-Katie

Day 32

Today was a sit ad wait day-just sit and wait to see if her fever went beyond the 100's. Gratefully it didn't. her energy was up and down all day, but she is still complaining about lower stomach pain and it is hard to walk. When I hold my hands out to carry her- we now call it the mommy chair.
You know that saying "I wouldn't kick him out of bed for eating crackers"? Well, that is so not me. I can't stand crackers in my bed, or any crumbs at all! Now, I find Ella and I eating every meal in my bed- including lots of crackers!  I love that she finds my bed so comforting, so do I. Give me a cool fall day, an open window and a down comforter and I am a happy camper.
So now what? We wait. I call the Dr. again in the am and just wait and see. If she was a healthy child- no big deal, just a little fever. But since she is not we wait and hope that the fever doesn't go over 101 again.

Thanks for all your prayers while we were in the ER last night.
I don't know that I have ever been this exhausted in my life.

Steve completed his 9th marathon today! YEA!@!

Day 31- Flippen ER

Ella woke up at 4am with a temperature of 101.3. She was really warm from sleeping, so I decided to wait till 6am and get her up and check again. If her temperature is 101, that's our magic number to call the Dr. and go in to the hospital. We can't give her any medications for fever. When we got up, Steve took her temp and it was 100.3. For the rest of the day we played a wait and see game as her temp fluctuated in the 100's. Steve had a marathon in Iowa this weekend, and he left around 3pm. If he would have skipped the marathon, I am sure her temp would have stayed in the 100's, but as Murphy would have it, he left and around 6.30, her temp hit 101.5.

So off Josh, Ella and I went to the ER. One of the Dr.'s in our group also works at St.Alexis in Hoffman Estates- so he called ahead and had us go there instead of heading out to Chicago.  Josh wanted to come, because he had not been to the hospital yet through this adventure and wanted to know what it was like. I thought it would help him have a better understanding of what she is really going through, so he came. Next time I think I'll drive to Loyola. Carrie came and got Josh and they left around 9.30.

They didn't want to access her port. so they put in an IV. Her veins rolled, but they got it. Then she had an X-Ray, blood work, urine analysis, and ultrasound. They decided around 11 that they would give her a really strong anti-biotic in the IV. They inserted it, but the IV was no longer in the vein and it just burned and puffed up under her skin. They removed the IV and decided to give it to her in a shot. This took until 12.42 to get. In the meantime, the pediatric doctor decided to leave because we were the last ones left- so they moved us to the adult ER area. This is not a pretty area at midnight! Cops all over and adults with bloody bandages. They were going to leave us in the bed, in the hallway to wait for the shot. No fricken way! So the charge nurse put us in an empty room. About 10 minutes later, they came and gave her 2 shots in the thighs, she was pissed and tired and just screamed. This whole time she insists on laying on me so she can rest- so I'm in the bed too. I just sat there stroking her hair, and singing to her. Unfortunately, the hair stroking resulted in her hair falling out all over the place. She has started handing it to me now to throw away when she finds it on her clothes or pillow. After her shot they said they would be back in 10 minutes with the discharge papers so we could go home. Just so everyone knows- when anyone in a hospital says 10 minutes- it doesn't really mean 10 minutes. They left us in there for 40 more minutes. I finally reached far enough over to hit the call button without waking Ella, and I could here them say "Why is the call light on in room 14? No one is in there." quickly followed by an "Oh Shit!" 10 minutes later a different nurse comes in with discharge papers and tells me to give her Tylenol for her fever. Are you Fricken kidding me? So, until this, I would rarely question a medical professional- but now.... I told her "NO, I don't think so". She said "Okay you can give her Motrin too." They my tiredness kicked in a little and I explained to her in a not so polite tone that if I could just give her Motrin then I would not have just spent five and a half hours in the Flippen ER because my baby had a fever! SHE HAS CANCER!
We got home around 1.30am. Ella appetite is already gone from being on steroids, and now I have to con her into eating so I can give her her medications. Her legs still hurt and I have to carry her to the bathroom. Josh is happily hanging out with Aunt Carrie today and I am just waiting around to see if her fever changes. We are still on the 100's.

All I wanted for her was to have this week to play and smile and be a little bit of herself. I just want her to be happy. I'm so PISSED at Cancer right now, and at the same time, I know this is just the beginning. I wish I had a time remote, I would fast forward- just through the parts where she hurts and I'm helpless.

Katie

Day 30

We had great plans for today. Grandma and I took Ella to Woodfield Mall first thing this morning to go to Build a Bear and celebrate completing the first round of treatment. She complained a little bit first thing this morning that her tummy hurt, but that is pretty typical.
We got in the car by 9.30am to be the first in line at B.A.B. Ella actually smiled, which hasn't happened very often in the past month. Jan and I happily watched her pick out a puppy and several outfits. She named her puppy Vanilla Ice Cream and we all made a wish to put into the puppy. The woman at B.A.B. that was filling the puppy, just looked at Ella and knew she was sick. She asked me what was wrong, we told her she had cancer. It still hurts a little to say it out loud. She said that she thought it might be, and she was really sweet to Ella. This month at B.A.B is Childhood Cancer Awareness Month, Jan and I both donated today.
Then we shopped a little and bought a few hats for Ella, and yes, one was purple. For the first time today, she picked out and wore a hat. Then, she started saying her belly really hurt, and Jan and I got her back to the car just in time to throw up. All the way home, she screamed- and I mean SCREAMED that her belly hurt, and she threw up again. As soon as we got her to home she wanted to go to sleep. She slept from around noon to 7pm tonight, then went back to sleep at 9pm. The whole time she was asleep, she had to have one hand on me. If I left, she would soon wake up and yell at me to get back over by her.
She didn't wake up to eat, or even ask to eat. Her hair was all over the pillow she was sleeping on when we moved her to her bed tonight.

Today was a vivid reminder that we have no control. All we wanted was a fun day for Ella- just to see a glimmer of the happy girl she was a month ago, and Cancer wouldn't let us do that. She never even got to snuggle with her new puppy or play with the new clothes.

Cancer Sucks.
Have a good weekend everyone. Katie

Day 29-Chemo and good news!

Good Day- Long Morning.
Ella is so bloated, I couldn't find a shirt for her to wear today. When I brushed her hair this morning- the brush was full of little red hairs. It has lost it's shine and always looks greasy. She was mad all morning that she couldn't eat. It took us one hour and 45 minutes to get to the hospital, so much for getting there early. The procedure ran one hour late. As I stroked her hair while we were waiting, so much hair kept coming out. During the procedure, I decided to stay in the room this time. It felt like, so many things had gone wrong, I just felt like I should be there. I couldn't even see what the Dr. was doing, I could only hold Jan's hand and see Ella's face. All the sudden, I started getting light headed and had to sit down. I just felt like I had no control and it just hit me. She did great through the rest of the procedure. She is so tough! As soon as she woke up she asked for her hot dog.

So, now all the good stuff......
No blood transfusion!
Blood Counts were ALL good, Platelets, White ANC, and Reds!
No Chemo till next week!
No More Steroids, for now.
A whole week with good counts means- she can be a kid. We can go out to eat as a family. Or just go to the store! Yea, Yea, Yea!  She will still have the side effects for a bit of the steroids wearing off, and it will take a few weeks for her to lose the 12lbs. she gained while on the steroids, but I am still so happy. We are going to Build a Bear to celebrate!

Thank yo for Praying!
Love-K

Day 28

This one is Ella on her Birthday.....

Ella was so very tired today. She fell asleep in the car on the way home from taking Josh and Morgan to school- that's about 8.15am. I just drove around so she could rest, knowing that if the car stopped- she would wake up. Then she fell asleep again at 1.30pm and 6.00pm. So, what does this mean? Her red cells are probably low, and there is a good chance she will need a transfusion tomorrow....crap, crap and triple crap! So, we will be getting into to clinic early to try to get her done as soon as possible so she can eat. She can't have any food tonight after midnight- until after her procedure tomorrow. I do not know for sure that they have to give her the transfusion first, but I am betting they do, and that is a 3 hour process. Try telling a steroid enraged child they can't eat for hours- not fun for any of us. If it is anything like last time, she will be asking for food every 5 minutes. And when I say asking- I mean yelling. Hot Dogs are one thing she really shouldn't eat, but of course she now craves them like I did Oreo's when I was pregnant. So, her one treat after treatment is a Portillo's hot dog. Last time she kept screaming about that hot dog until we left! It was kinda funny.....
So, if your praying, please pray for her Bone Marrow Aspirate and Spinal to go well, and that her blood/platelet counts are good for tomorrow. Pray that she will be distracted enough to not be focused on her hunger and that with God's Grace we all make it through the day.
Blessings and Love-Katie

Day 27

Hi All. Ella had a hard time doing homework today. Her hands were really shaky this morning, but better in the afternoon. We skipped written school work for educational web sites. She seemed happy enough with that. She tried climbing the stairs at home and was crying that it was too hard. She hit a wall around 1 and I laid her down to rest. When we went to pick up Josh and Morgan from school, she didn't even talk to Morgan. I am worried that she is getting more withdrawn. She stayed cranky for the rest of the night until daddy got home and she could play a princess puzzle game on his phone. I think I am going to get a new phone just so she can play with it.

Today, was to hard for me. Ella got up 3 times last night, so I didn't get much sleep. I lost it around 3 today. Spilled a glass of water, and that was my final straw. I just started sobbing. Ella asked me why I was crying. What I wanted to say was "Because you have Cancer and it has taken over your body- and I hate it!" But, I just told her that sometimes mommies feel sad and we cry- then we feel a little better. In my case, it also meant a piece of Bakers Square Peanut Butter Cup Pie and a Mocha from Starbucks.

People ask me how I am doing, and I don't really know how to answer. Today, I just wanted to run away. I'm sure Ella did too.


Clinic again on Thursday morning. This means the possible end of Steroids...PLEASE! But, it also means chemo, bone marrow aspirate, and a spinal tap. Chemo- kills more cells, Bone marrow- to see what her exact count is, and Spinal to inject more chemo into her spinal and cerebral fluids. I am really hoping her counts are good and she does not need a blood transfusion on top of everything else. If you have ever given blood- Thank you. Your blood might have helped Ella twice already. West Ridgers.....next blood drive at WRCC, please consider signing up. You really are saving a life, and it doesn't cost a thing!

The next step of her treatment is called Consolidation. She will be on Chemo (2) and an immuno-suppressive drug. And yep, this one causes hair loss too. Her hair is starting to thin, but they said it comes out in chunks when it is time. I was stroking her head last night and there were so many little hairs on her back.

She went to sleep early tonight- already asking for Noodles and Company as a special treat tomorrow. All her thoughts are of food these days, but I know when she changes drugs that too will change. please pray that Thursday will go well at clinic and her counts will be good, and she will not need blood.

These are from a shoot I did with her and Josh in 2008. They are some of my favorites, but don't worry...I have tons of favorites :-)

Blessings and Love,
Katie

Day 26

I know this day isn't over yet, but I need to take a moment to revel in how strong my little girl is.
Steve pointed out something very important yesterday and I want to share it.
During this entire process, she has not questioned us. Not in the hospital as we held her down. Not to take her medicine. Not to stay in the house and forgo play dates. Nothing. Today for the first time she had a real melt down about taking her medicine, but that is really it. Through this entire process, even though we are only a month in, she has not questioned that we love her, and we are doing what is best for her. Her Faith in our love for us, and God's love for her is stronger than my own at times. I think she is the Strong/Silent type ;-).
Have a good day.
K

Day 24 & 25-We Venture Out

So, Steve is well on his way to achieving his goal of 10 marathons by 10-10-10. The 10-10 Marathon is the Chicago and he has 1 more next weekend. We booked a hotel for this weekend, so we could go as a family, because it is a smaller marathon and easier to see him on the route. We want to try to encourage the kids to challenge themselves and do things like- run a marathon- so we feel it is important for them to see us doing those kinds if things.

Since Ella's blood counts were good, we decide to still go- and we brought Jesania with us. If you do not know Jesania, she is my Little Sister. We have been in Big Brothers big Sisters together form almost 7 years now. She is a part of our family in so many ways, and she is a wonderful girl. I can't tell you how much love came out of her this weekend. She completely stepped in and helped out with Ella. She sat in the back seat with her on the trip, fed her, made sure she was drinking water, and even let her sleep on her shoulder. She never once complained that she had "Ella duty", and trust me- it is no small thing!
The drugs/chemo really did her in this weekend. Her poor belly is so very extended, everything hurts to touch, and her muscles in her legs have become so sore she can barely walk. They told us this would happen, but I still feel like it caught me off guard.

Staying at a hotel was its own new set of obstacles. I had to check in, and then re-clean the entire room, change the sheets, blankets and pillow cases to get things set up to take care of Ella. They had us in the wrong room, without a fridge or microwave. When you are bringing your own food to make sure you child is eating everything you want them to, then these 2 items are very necessary. Steve kept everyone till the room was ready. Josh and Jesania were able to go swimming for most of the night and part of the next day- so Josh had a blast. Swimming is his very favorite thing right now. Turns out this hotel stay was not so much fun for Ella, because she couldn't really leave the room and she felt so miserable. She just kept asking to go home. I felt terrible that we were there, but at the same time, I was happy Josh was having so much fun playing with Jesania. I feel like I can't win. Cancer Sucks.

She was so very tired when we did get home. The drugs also make her "moody" and moody combined with a raging hunger and an achy body- you get one cranky 4 year old! So we fed her, got her in a bath, and got her to bed when we got home. she said her prayers and drifted off to sleep asking for food....

I can't wait until this first 28 day period (Induction) is over! She will be off the steroids and at least look a little more like my child. It is so sad to me that she doesn't look like my baby anymore. I feel like her face is hiding behind this swollen mask that the cancer has put over her face. Her eyes aren't even as bright as they use to be. It is different that having your child grow up slowly. This may sound vain, but it is not meant to. I also hate that it has left her body with scares. 2 on her chest that seem like they will never heal. Her beautiful smooth skin now has these little bloody lines on it.
All the way up to Wisconsin, I kept checking the rear view mirror to see if she was doing okay, and I just kept staring at her -because she does look so different to me. It really catches me off guard. Steve saw me crying a few times on the ride. I just shook my head and said "It's Not Fair", and he would hand me a tissue.

Cancer Sucks.
K

Day-23

Hi all. Ella was really tired today, and her poor little belly is so stretched out, she looks like she has an outie belly button. She had energy for a bit this morning, but the rest of the day she was pretty tired- even after she napped today. The good thing was she didn't get sick this time after chemo- yea! I know I should be happier about this, but I don't know how to be. She just isn't the same and it is breaking my heart. I watched one of Ella's friends playing today- and laughing- and running. All I could think it "It's not fair."

We are going to go cheer daddy on for his 1st of 3 marathons. This will be our 1st trip with Ella, and I'm nervous- but I want her to go. I don't want her life to just be chemo treatments for the next 2 years. So, whenever possible- we are going to take her places.

Scared, but doing it seems to be normal for us now.
Have a good weekend.
Katie

Day 22-Chemo

Today was a good day! Ella's White and Red counts were good, so no blood transfusions! YEA!!! I think we were the only one's in Clinic that didn't need one. Auntie Carrie helped to keep her occupied and we were at the zoo by 1pm! We also did tattoos at clinic today, and Ella wore her purple tutu and matching frilly purple leggings! As you can see, she wanted this special tattoo from her Nanna right in the middle of her forehead! She has gained 7lbs in 13 days from the steroids she is taking.

She had a list of animals to see at the zoo, and we walked it in about an hour and she was out all the way home from the zoo. Well, until we were in construction and almost home and she decided she had to go potty "Right Now!" Oh well, poop happens!

When we got home there were more pages for her book and gifts on the porch- Thank you. I know I haven't met everyone that has sent us a letter, card, gift or email- but your kindness is so very much appreciated. We feel very blessed. Ella ate 2 dinners and asked to go to bed at 6:30pm, which was okay with me. We both fell fast asleep and got up around 6am this morning.

Daddy is running a Marathon in Wisconsin this weekend, one in Iowa next weekend, and the Chicago marathon on 10-10-10. The Chicago marathon will be his 10th marathon! we got the all clear to go watch him this weekend as long as Ella is doing well on Saturday. GO DADDY!

Love, Katie

Day 21- My Thoughts. Beware.

Was hoping today would be a really good day for Ella. It wasn't great. She was okay in the morning, but by lunch she was really cranky because her tummy hurt, and fell asleep for 2 hours in the afternoon. She woke up crying and when I asked her what was wrong, she said she hates falling asleep, because when she wakes up her head is wet! When she sleeps now her entire body sweats. She usually wakes up completely soaked. Every try to wrangle a half sleeping child out of her PJ's and undies when they are soaking wet- then get them back on? Good times my friends, good times.
She was in a very un-consolable mood for the rest of the day. Everything seamed to set her off, and she only wanted me. This is really hard for Daddy, because when she was born, she was a total daddy's girl. The first 4 months of her life, she didn't want much to do with me- just daddy. He is really missing that right now.

I was determined to go running tonight. Josh was off at Awana's, Steve had Ella, and my plan was just to sneak down to the treadmill in the basement for an hour. I should have known better. Ella had a complete meltdown- opened the basement door and cried "MOOOOMMMMYYYY!" as loud as she could. You know this yell- the blood curdling one that makes you think they may have just lost an arm. She had that hyperventilating breathing going on and she was saying "I just want mommy!" Well, I am sitting here, still in my workout clothes. I didn't even bother to change when I ran to the store after she went to sleep- it is not a pretty look.

I ended up doing some walking/retail therapy at Target. Anyone else do this? Come on, I know your out there. First, circle the outside of all the aisles, looking at the end caps for the pretty red sign that says CLEARANCE. Hoping to find that one thing you have been looking for at a really awesome price? And, of course I did. About 15 of those somethings at a really awesome price. Kids scissors for $.20. Who can pass that up? Anyway, I ran into Ella's old babysitter. The one that watched her from 6 weeks old till 6 months while I was still working. One of the kindest biggest hearted woman I have ever met. She asked me how the kids were and I found myself in the middle of my therapy going through Ella's story. I need to come up with a gentle way of letting people know because I kinda blurted it out. Anyone know a good way to tell someone your baby has cancer? ARGH!

During one of her meltdowns tonight, I took her outside to calm down. It was such a beautiful night. I just rocked her in a chair. Talked about the breeze on her toes (that one I got from her Grandma), and listened to the birds fight over our bird bath. As I held her I thought, "I should be thanking God that I can hold her", but instead, I just cried and stroked her back. Not feeling very Sheera tonight.
Tomorrow is chemo. Carrie is coming with us tomorrow. Her color looks good, so I am hoping no blood transfusions will be needed for tomorrow, and maybe, just maybe, we will be able to make that trip to the zoo.
This shot is from yesterday, when her friend Katelyn came over for a visit.

Thinking I'll have a martini tonight, maybe 2.

Blessings,
Katie

Day 20

The further away from chemo day we are- the better she is. Today was a great day for Ella. She wanted to start her "school" as soon as Josh left today, she couldn't wait. She has so much energy between 5am-9am.
A friend visited today, and broke down in tears when she saw Ella. She said the pictures didn't really show just how different she looks. I'm afraid that Ella's little friends will be afraid of her after she has lost her hair because she will look so different. Not to mention that she is missing out on the day-to-day activities that all her other friends are doing- Awanas or karate class with her brother. I think it is a lot to ask a 4 or 5 year old to accept that kind of change- when most of the time as adults we can't accept it.
Looking forward to tomorrow being another good day for Ella.

Took this one of Ella 10 days before she was diagnosed.
Katie

Day 19-1st day of School

Josh and Ella had their 1st day of school today. Josh at his new school, and Ella at home. I never thought I'd be a home schooling parent- just didn't think I would have the patience for it, but Ella really got into it today. I'm not really worried that she will fall "behind", but I don't want her days to consist of just feeling sick and watching TV. This way we have a schedule and a plan for when she is feeling well.

She had a good day today. She went with us to take Josh to his 1st day of school, and she got to see her friend Ali for a few minutes this afternoon. She lit up and really enjoyed seeing her friend. Pickles (her babysitter Sara) came over and we took Ella for a walk. She had a pretty good energy level today and took a good nap.
In our family- It's kinda a sign of friendship if you have a nickname. Almost everyone we know has one- including all of us. Even our cat and dog have one. Ella is Tinker or Ella Bella, or Meow Meow if she is playing with Rachel.

Looking forward to tomorrow being another good day, and back to chemo on Thursday.

Love-K

Day 18

Ella had a pretty good day today. She had good energy in the morning and asked to go play bubbles with Rachel. By 1pm she was completely exhausted and fell asleep on the couch, wrapped in 3 of her favorite blankies. She is definitely a blankie girl. I had to sneak them away from her this morning to give them a quick wash! She went to bed early and her tummy ached most of the afternoon. She was too tired for a bath, but she really needed her hair washed, so I got in the tub and let her lay on my belly while I washed her hair. Then I just kept pouring water down her back. She said it reminded her of how it felt in a "hot pool" (that's a hot tub in Ella speak).

Something is sticking with me today. When Ella was first diagnosed, one of the nurses said "No dreams should be lost for this child". Even thought I had not verbalized it, in my head, I had already built up bigger dreams for her- stronger dreams. In my head she was making her first address as Madame President of the United States of America! I guess in my head I was already picturing her as stronger than I ever had. Tonight we read a story about Sacajawea and how she helped Lewis and Clark. I told Ella that Sacajawea was a brave warrior- just like she is.

Night Night All.
Love-Katie

Day 17- CureSearch Walk

Ella and I signed up to do a Childhood Cancer walk in Chicago today, but with the rain it was too cold for Ella. She stayed home with daddy while Tirtha, Nik, Carrie, Jesania and I walked in her honor. Even though we were completely soaked, it was worth it. They had an opening ceremony and they gave me a medal for Ella. For the kids that are no longer with us, they had a moment of silence. I watched a mom's eyes well up in tears as she prayed for her child that didn't beat Cancer. It was all I could take. I was glad that I wasn't standing around everyone so I could cry. As I dried my eyes- I could see that we were not the only ones. Moms, Dads, Aunts, Uncles, Friends- all crying. The one thing I noticed, was that not one child I saw was crying. Whether they were in treatment or a survivor, they were completely happy just to be around the people they love. I think it is harder on us than them. We think about what they will not have, instead of what they do have.
When I put Ella down tonight, she fell asleep right after we prayed. I sat there stroking her hair and looking at her face. I just kept thinking it is not fair that she doesn't get to have a normal 4 year old life. Again, thinking about what she will miss instead of what she has. She has parents that love her. She has family and friends that would do anything for her. She has a happy home. She has good medical care. She has the love of her God. What more does a 4 year old really need?
2 of her doctors were walking today. They were, on their own time, to hug their patients and support them. This really went a long way for my spirit and faith in her care.
She had a rough day today. Her belly was so swollen that she wouldn't let us touch it. She was really tired and didn't eat as much as she had been. We checked in with her Dr. to make sure she was okay. I feel so cautious about ever little thing now. the days of "Oh, she will be okay." are gone, and they probably will be for a very long time.
Night all.

Day 16

Ella did really well today. We planted purple and yellow tulips for the spring and got some fresh air today! She was nauseous all day, but that was it. So- pretty good. She was really tired and took a nap. She has never been a napper, and still says "I'm not tired!", but them falls fast asleep.

She looks so different already. Her face looks like a chipmunk that is storing it's winter nuts. You can't even see her dimples. Her poor belly is swollen too. Her 4T pants use to hang of of her, and now they are too tight. We read a book this morning about a little girl with leukemia that lost her hair (a Charlie brown book). When we were done with the book, Josh told Ella she was beautiful.

I'm tired and crankie. I haven't worked out since the first week of August. Looking forward to walking tomorrow for Cancer with Ella and friends, but also nervous. We haven't seen too many kids yet, and I've only met 2 families in this situation. This will in a very visual way make it even more real. Tonight I kinda feel like running away, but at the same time nothing can pull me away from her side.

We have been taking Ella's picture almost everyday. This is from Monday when we were in Baraboo visiting family. This is her Aunt, Uncle and cousins.

Have a good weekend. Love-Katie

Day 15- Chemo at the clinic

We got up this morning with a family game plan for the day. Feed Ella, Steve would go for a run, feed Ella again, wake up Josh, feed Ella and Josh, get ready to go to the Outpatient Clinic for Chemo at 10am for about 1.5hrs, feed Ella, daddy gets ready for work, and everyone out the door. Hey- if Ella was feeling well, we were even going to make a pit stop at the zoo before we headed home.

One of my favorite saying is "If you want to hear God laugh, tell him you have a plan!". Ella woke up at 3am hungry. Steve went for his run. Josh woke up sick. This meant no clinic for him and no work for daddy. Ella and I went to clinic. Turns out her red counts were low, so she needed a blood transfusion. Turns out this is not a quick process. It took 2 hours to get the blood up to the clinic and another 3hrs to do the transfusion. Then she still had to have her treatment. We were there from 9.45 till 5.05pm. It was a long day for everyone- especially Ella. Her white count is also under 1 which means she is very susceptible to getting an infection. So we have to do our best to keep her away from Josh, who just has a virus and can't really be given anything. I am mentally and physically drained, and I know this isn't even the hardest part. LORD GIVE US STRENGTH! For tonight, I am hoping pancakes and a big glass of milk will do.

HUGE WIN FOR TODAY!!!!!!Her Dr. told me that they were looking for her bone marrow from last week to be under 5%, she was already under 1%. This is the same test they will due on day 29. If it still comes back under 1% she will be in remission and a rapid responder.....Praise GOD! It was a good thing he told me this early in the day, because I think it was all that got me through the final hour as she had chemo. I still blink the tears back as that clear liquid is dripping into her chest. She sat there watching Strawberry Shortcake, and I watched it drip. I suppose I will be numb to it soon enough- but not yet.

Love you all, thanks for reading.

Day 14

Ella had a good day today. We got to bring home Joshua and play with Ryan and Rachel. Ella's tummy hurt most of the day, but she had good bursts of energy and didn't get sick at all today. That will start all over again when we go in for Chemo tomorrow.

Today I told Josh that he was very special because God chose him to be Ella's big brother, and God knew he would do a good job. Then Josh asked me why God chose Ella to have Cancer. Damn that 6 year old for being so smart! I didn't know how to answer that except to say he didn't. Gratefully he accepted that answer.
I am taking Josh with for Ella's treatment tomorrow so he has a better understanding of why all this is going on. Visually, it is an easy day. They will access her port or "Magic Medicine Button" and he will just see clear fluid in the tube. He asked if she would be screaming, I told home no because God chose Ella to be brave. He said good, because he can't handle the screaming!

I gave Ella a bath tonight. It is the first time since her port was put in that she has been able to take a bath. She loves baths as much as I do. I bet she will have a big spa tub when she gets older. As soon as she stepped into the water she said "Oh that's good, warms me right up!"
When I was washing her hair, it seemed thinner to me. A few strands came out as I was rinsing her. Her face and belly are fuller. Its only been 2 weeks and I can see some of the subtle changes in her. The biggest change is her voice. She speaks with a different confidence now that she hasn't had in her voice before. Cancer may be silent, but the meds sure do speak loudly.

Day 13-Win for the day.

Ella woke up at 3:30am-HUNGRY! I got smart and am keeping Goldfish crackers by the bed. She ate them every hour until I got up and made french toast. She was in a really good mood all day, and her stomach wasn't upset at all, so we decided to go pick up Josh in Wisconsin at Grandma and Grandpa's house. The car ride was easy and she watched Bolt. Ella's cousins live across the street from her grandparents, so I also thought it would be good for her spirit to see them and for them to see her, and know that she will be okay.

We got good news today! Ellas blast cells(bad cells) were under 5% AND she has the genetic mutation that puts her in the right category to be a rapid responder to the chemo. There is only one more marker to go before she is offically in that category- and that is what we are hoping for. Yea God!

Tonight her tummy was upset, but she fell asleep without getting sick- for the first time in 3 days. We go to chemo again on Thursday.

When this first happened, I asked God Why? I questioned why he would choose this for my child. If God has a plan for everyone, then why would he put this into my daughters plan? I remember when I was pregnant with her. It wasn't an easy pregnancy. I was in the Dr.'s office many times so she could be monitored. I remember one morning I was in the shower and I felt like something wasn't right. I got down on my knees in the shower to pray. I cried and prayed that she would be healthy and happy. I know she is happy and I trust that he will make her healthy again. I have to have this faith.

This is her "Cancer Stinks" pose!

Day 12-Photo Shoot

Today we did a photo session with Ella. We wanted to make sure we capture her today so we can watch her as she changes and record her journey through the next 2 years.
From what we know right now her treatment will last 2 years and 3 months. Her chemo will be outpatient as long as she can stay infection/illness free. If her blood cell or platelet counts are not where the doctors want them, she would have to go in too. Every week we will be driving down to Loyola for "treatment".

Here are a few shots from today.
Love to all of you.
Steve and Katie

Day 11-Good Day

Ella did well today. She is keeping food down and we even took her to Dairy Queen for Ice Cream. We sat outside in the rain, under an umbrella, and watched the fountains by the DQ. She went to bed early and asked for a play date with Morgie- at lunch- with Wacky Mac.
Steve and I are hoping to do a photo session with her today. I want to capture how she is now and what changes will occur in her face during this chapter of her life. It is funny, in just the past week, Steve and I have noticed she is more outspoken.

I hope this blog gets boring and no one wants to read it anymore, because that means my baby is healthy and living a normal life!

Day Ten-Day After Chemo

Ella had a HUGE appetite today, and she didn't keep a thing down. I hate that she is getting use to throwing up. She was really tired today, but she was happy to see Pickles, Aunt Jenny, and have her toes painted today. Grandma and Grandpa took Josh up to Wisconsin for the rest of the weekend to play with his cousins.
Ella and I also went for a walk outside where we got to see her friends Rachel and Ryan for a few minutes. The Doctors said she is safer from germs- outside. When people come over they bring new germs in and they sit in your house till you wipe it away- so outside it is! I took her to the park for a half hour and she swang her little heart out! She is so cold all the time. it was 68 and sunny today, yet I wrapped her in her Snuggie and a blanket to stroll her down to the park. I hated bundling her up like that, because it made her look sick. I know..."harder on me than her."
Thank you to all of Ella's faithful prayers. Have a great weekend, we love you all.

Day Nine-Back to the Hospital

When you find out your pregnant, as a parent you safeguard the house. You make sure that your child is safe. You put locks on the kitchen cabinets, lock down the toilets and add bumpers to the sharp edges. When you take your child in for chemo, you have to sign a release and authorization form. Releasing the hospital from liability and permitting them to poison your child. It is like opening the kitchen cabinet you so carefully locked up, taking the tops off of everything and saying "go play, hell have a drink!" I hate signing the forms. In my head I was screaming- "no, not today." But, I know I have to sign it so I take a deep breath, let out an equally deep sigh, and sign. To quote Debra Barone "Why do I sigh?....I sigh so I don't explode!"

Today, Ella had 2 chemo drugs, a Spinal Tap, and a Bone Marrow Aspiration. She didn't get to eat until 2pm today and she was MAD! She made up a huge list of food she wanted as soon as she could eat. They had to access her port for the first time. They had to push her body to insert the needle into her chest. She cried because it was scary, but not because it hurt. She was as brave as a 20 year old. The doctor commented that she was older in her actions than in years. We got to the hospital at 9am and left at 2pm. She was nauseous all afternoon, and fell asleep around 7pm. We are waiting for the results of today's tests and one from last week to get a good marker of where she is. We are hoping that she will be a rapid responder to the chemo, which means a quicker remission.

I spoke to the nurse for a bit today. Getting her prospective on side effects and how the kids are during treatment. She thought it would only be 3 more weeks before Ella would start losing her hair. She said it would be harder on me than her. She is a "girly girl" so I dont really believe that, but we will see.

I had to ask a friend to step in and take Josh to a zoo sleepover that we scheduled months ago. He didn't seem to mind, but I did. I don't want to have to choose between my children, but I do not want either of them to miss out on their childhoods. This sucks- and it is just the beginning. I pray that we can find some balance and that Cancer doesn't take over our lives.

Our church has a small room at the side of the auditorium. This is our chapel. When I worked there I would go there to pray before I started my Sunday, or when something big happened during the week. I went there when I found out my friend had cancer, when I couldn't get through to a friend about our relationship, when I needed to clear my head. I know it is just a building, but I wish I could go there now to be in the small, silent room to pray and clear my head.

Thank you all for your prayers. There is a 2.5 mile walk in Chicago at Soldiers Field on September 11th in support of Children's Cancer. If Ella is feeling well, she and I will be walking together. If you would like to join us, please post a comment and let me know. I will post more info on facebook. The website is www.curesearch.com. I think it is $10 a person and kids are free.

Love you all. Thanks for reading this. It helps me to sort through my thoughts.

Day Eight-Yuck.

Ella woke up hungry again and asking for food this morning. This is really good since we need to keep her energy and calories up. The steroids make her hungry, but they also upset her tummy. She couldn't sleep last night because her belly hurt. She woke up at least 5 times and we tried everything we could think of that wasn't a medication. She ate 2 breakfasts and at least 3 other meals today, she was also doing pretty good on her fluids-then she threw it all up. It was like her belly saved the entire day and then- rejected it all at once.
I will spare everyone the details, but YUCK. Poor ella didn't know what to do. She was so upset that her blankies were dirty and she couldn't snuggle with them to comfort herself. She is a blankie girl! She has to have her soft fuzzy blankies by her face when she is sleeping. It is really cute how she reaches out for them in her sleep. Not fun for Ella. Josh yelled "gross" and ran to where he couldn't see "it". She has been really cold the past few days and I had just gotten back from buying her new PJ's that were warm and fuzzie, so hey- at least she got to wear a new pair of jammies!

Tomorrow Ella has to have a Spinal Tap, where they will inject Chemo into her spinal fluid, and a Bone Marrow Aspiration. They will access the special "Medicine Button" that they put into her chest and she will have chemo through an IV too. Please pray that these procedures go well for her, I know it will be scary to see them stick a needle into her chest- for all of us.

I would like to thank all of Ella's little prayer guardians out there. I am finding it hard to pray the way I know I should right now, so thank you for doing it when I struggle. Thank you all for every post and kind word. Thank you all for wanted to help my family during this time. We feel so very blessed.

Day Seven-First Day Home or One week down, too many to go.

Today was overwhelming to me. I do not know if I would have been okay if my family wasn't here with me. I think today was one of those reality checks. Our new reality is Cancer, and I hate it.
I went to Walmart to get an accurate thermometer. We have 4 and I swear they all suck! It took me an hour to get the 6 items on my list. I felt like I was in a daze. It was like I had lead weights on my legs as I walked through the store. This guy sneezed into the air and I almost went ballistic on him. In my head I was thinking "that could have killed my child if she was here!" Okay, I guess I am still looking for the balance between crazy germ-aphobia mom, and my regular crazy self.

Ella only woke up once last night, and that was to crawl into bed with us. Before all of this happened Steve and I were working diligently to keep her in her bed at night, now I'm happy to have her pushing me off the side. This morning she asked for noodles for breakfast, we compromised and had pancakes. She was tired today, but she did well. She took a good 2 hour nap and was still in bed by 8.30pm. She had a jammie day today and asked if she could have one again tomorrow- that's okay with us!
Here is a shot from when we left the hospital yesterday- in her purple dress! She looks so strong in this shot!

When I tuck her in at night, I always say "I love you all around the world, and back again!" She usually says "You always say that!" Tonight she said "I love you to Texas and back again, Texas is bigger right momma?"

Josh has been home one day now. He seems different. Today I mourned the fact that his reality is Cancer too. We went to meet his new teacher today. During the conference he raised his hand and said "My sister is really sick". I totally lost it. I tried not to let him see, but he is a smart kid. I am taking him out in the morning to spend some alone time with him. I am hoping it will help him feel like things are a little normal.

I would like to continue a special project that some of our friends and family started. If you are praying for Ella, can you please send us an 8.5 x 11 sheet with your picture(s) on it? We are going to bind them into a book so she can take it with to the hospital when she has to go and we can show her everyone that loves her and is praying for her. If you want to email it to me-that works, and I can print it out. Feel free to be creative. This is something she will have forever. Thanks!