Thursday, December 22nd

Ella still has a fever. She has been battling a low grade temp for a week, but yesterday we made the call and took her to clinic. They ended up x-raying her chest and found some residue in her lungs. Her counts came back at about 600, which is almost too low for her body to fight, so they gave her a dose of antibiotics and are running cultures to see if it is bacterial or viral. She woke up this morning with a fever and Steve and Ella are back at clinic for a 2nd dose of antibiotics.  Right now we are praying her ANC is not under 500 today, otherwise she has to stay at the hospital. That would mean a possible Christmas at Loyola.  To top it off, Josh woke up not feeling well this morning so not we have to keep them apart until we know for sure Josh is healthy.

Thank you to my prayer warriors!
Blessings~Katie

UPDATE:  Ella's ANC is 580, so she got another dose of antibiotics, and a prescription for antibiotics and she was able to COME HOME!!!!! YEA!!! As long as we can keep the fevers at bay, we will be good.  They put her on Chemo hold for now and she is scheduled to be back in clinic next Tuesday as long as she doesn't get a fever before then.
Now, here is hoping that this is bacterial and the antibiotics will help. I will keep everyone posted.

Thanks!

December 18th, 2011-ER, Clinic and stuff.

Sorry for the late post. This has been a long week!

Ella and Adorable Bunny

I caught a cold last week, which means Ella ended up catching a cold. I have been so worried about her catching something from school and when she does get sick, it's from me. Ahhhh!  Ella spiked a fever of 102.2 last Sunday, so off to the ER at Loyola she went with daddy. Her white counts came back good- which means she has the ability to fight the cold, so they gave her a heavy does of Antibiotics and let her come home.  I can't tell you how grateful I am that her counts were good! Josh saw me crying when Ella and Steve left for the hospital. He asked me if I was scared. I told him yes, because I never know what is going on inside her body, but I have to trust that God will keep her safe. That night he cried when he was praying for Ella before bed. He prayed for her to be healthy and for the cancer to go away. He really wanted to stay up until they got home from the hospital, but since we didn't know how long she was going to be, he fell asleep.
We went back to clinic the next day for a second round of antibiotics and since we were there, they also gave us her chemo 1 day early to save her from being accessed again and having to come back for another clinic visit.  She still isn't 100%, but she is definitely better.  Thank you to my Facebook friends for praying for Ella this past week! And Thank you to nurse Theresa who advocated for us to get chemo and not have to come back!

Ella missed school all week. She was pretty bummed that she had to miss the Christmas Party at school. When I told her she couldn't go, she said "momma, cancer is stinky!" I know baby, I know. I hate when she has to miss part of being a normal 5 year old because of cancer. It pisses me off! Then she acted out how she is kicking cancers butt. That part was endearing. I told her to kick it good, and she said "I am momma!".

Charles Tillman from the Chicago Bears has a foundation that supports terminally ill children. He came to Loyola to visit a few weeks ago and very generously donated backpacks filled with goodies, signed autographs and took pictures with all the families. Ella's favorite part was that he gave every kids a Build A Bear in a Bears uniform. She was so excited to get the Build A Bear, and she ended up with 2 because her brother handed over his immediately. Now that he is 8, he is too big to be seen with a stuffed animal! .Mr. Tillman remembered that I spoke at his breakfast earlier this year and even took a few minutes to talk to us about how he plans to grow the breakfast for mom's next year. He is very grounded and down to earth for a sports figure. Very kind. Thanks Peanut!

Ella dressed up for the movie.

Everyone have a Very Merry Christmas this year. I can't help but reflect where we were this time last year. Ella was in the throws of hard core chemo and her Aunt Carrie rented out an entire theater so she could see Tangled. Her hair was so thin, but we curled it and got a crown on her head. It was a good day.
Thank God for your blessings, realize everything you have to be grateful for, laugh even if you don't want to.
Merry Christmas and Happy New Year.

Blessings~Steve, Katie, Josh and Ella

Wednesday November 16th, 2011

Ella's thoughts on Cancer......

Ella Bella had clinic yesterday. She did well, her counts were good, which makes me feel better about her being in school all day. ANC was 2000, which is stellar. Her liver function is down to 2 times the normal level, which is way down from 8 times the normal levels. Small victory and we will take it.  She is growing. She was 3'5 tall when we started this journey and now she is up to 3'8.75". Her weight is also up to 44 pounds, and so they had to increase some of her medications.

Ella in Recovery from Spinal. Her eyes tear up from the medication.

Today her back was hurting from her spinal, she napped and fell asleep early tonight. This is how I know she really isn't feeling great.  It seems like she feels worse after each clinic visit. Hopefully she will feel better tomorrow.
I forgot my camera for the first time I think. So I had to use my phone to take a few pictures. She was focused on going to Red Robin to eat when she was done. She could not eat anything till the procedure was done. She knows it is going to be a rough clinic visit if she can't eat. The first thing she asks when she hears it is a clinic visit week is "Can I eat?". All she wanted was macaroni and cheese and melon from Red Robin. It is so funny that such a little thing to focus on can just get her through it. She is so amazing. As she was drifting into twilight and I just kept smiling at her and whispering "I love you, I love you, I love you".
She is my little hero.

We did our family photos this past week. Thought I would share it with everyone.

Thank God for all your Blessings- big and small. Happy Thanksgiving.

Blessings~Katie and Family

November 15th, 2011-Clinic Prayer

My Prayer today for my daughter.

Dear Father, please hold my child today.

Be with her this morning when she can't eat.

Be with her when she is nervous on the way to the hospital.

Be with her when she is anxious because she knows when they call her name, she has to go through the doors that start her chemo.

Calm her while she is anxious as they take her weight, height and the squeezie takes her blood pressure.

Hug her as we walk in to see the nurses who treat her and try not to fall in love with her, because they are afraid of losing her too.

Hold us both as she sits on my lap and I hold her as they put the needle in her chest.

Be with nurses who do this procedure.

Thank you for the nurses who do this and then crack jokes at each other all morning in love.

Be with her as she anxiously waits for her blood tests to come back.

Thank you for her grandparents who keep her occupied and smiling during the waiting times.

Be with the doctor who will examine her today, please guide their hands and their heart.

Thank you for the doctors that treats my child's body and spirit.

Thank you for the craft lady that adds another distraction while Ella is waiting for her spinal.

Be with her as she sits on the table waiting for her spinal.

Be with her as the inject her with drugs.

Hold her still while they take spinal fluid to be tested.

Please do not let there be any cancer in her spinal fluid.

Be with her as chemo is injected into her spinal fluid and we watch as the fluid drips on the table.

Please hold her as she comes out of the medicine and begins to wake up.

Please be with the nurse who watches her today to make sure she comes out of it okay.

Please be with her as the administer chemo through her port.

Please be with the doctors that test her spinal fluid, don't let them miss anything.

Please let her feel the love of her family and friends that are praying for her today.

Please let her be happy

Please let her be cancer free.

Amen

Tuesday October 18th, 2011-It's a GOD thing.

Ella's clinic visit on went well. Her ANC was 1800 and she grew another 1/4 inch! Every month she grows 1/4 inch. She was happy that her favorite nurse accessed her port and she stayed in a good mood the entire time. She was pretty excited that Grandma and Grandpa got to go with this time and that a trip to Build a Bear was planned out in detail. I hate to say it, but she is doing really well.
I think she likes school, but she will never admit it to me. She has a mini-meltdown every morning, but is smiling before they get down the street. When I went on the field trip with her class, she was holding hands with other kids and playing. It was really cool as a parent to have the opportunity to see her interact with new kids, and just be happy.  I took these shots of the kids last week. Just some fun fall pictures.

While we were taking pictures at the forest preserve, we saw a group of horseback riders gathered with their horses. Ella and I walked closer to them to look at the horses. All horses that are brown she names "Chocolate" and all white ones she names "Vanilla". This is similar to many of her build a bear names. While we were admiring a "Chocolate" the owner came over and asked if Ella would like to feed the horse an apple. Usually when strangers (and even sometimes friends) approach, she shies away. This time she was like "Yea Yea!". So the owner let Ella feed Chocolate (Dusty) an apple. Then she offered to take Ella for a ride. My shy girl hopped on that horse and did 4 laps without me. When they were done, I thanked the owner and asked her if she rode in this area often. She said in fact no, this was the first time she had been out since April since she lost her father. I told her how sorry I was that she lost him and asked her how he passed. She replied "He had Cancer". I told her he must be close by, because Ella has cancer too and he must have known she wanted to see the horses.

 Now that HAS to be a GOD thing!

Thanks for keeping up with us!  Ella only has 1 year left of Chemo now! I can see Homer Simpson dancing in my head going Woohooo !!!!

Blessings!~Katie

Thursday September 22nd, 2011

My Girl on her 1st day of school.

Ella started Kindergarten!

She was so excited to go, and loved playing with everyone....NOT!   She said she didn't want to go, she was anxious, she was extra clingy the days leading up to the first day of school, but, she went and she was singing her ABC's on the way there in the morning. The first week of school they had a color of the day and purple was the color for the 1st day. So far Ella has worn a Tutu EVERYDAY of school.

She looks so small, and her backpack looks so big.

She had clinic on Tuesday. This clinic was Chemo (Vincristine) and the added delight of a flu shot. I think the flu shot was worse than chemo, because it wasn't what she was expecting.  She wouldn't use her arm for almost 48hours.  Her differential counts were low, but not low enough to hold chemo. Her port was very black and blue this time after chemo, which is a concern to mom, but she is okay. She got the all clear to go to Myrtle Beach so she was very happy. We were not able to go last year because Ella was in the middle of her hard core treatment. She can not wait to go. It is her favorite place to visit.

We went to an apple orchard this weekend to pick apples with our neighbors and good friends. It was my first time at an apple orchard, so I took lots of pictures and Ella has made sure that one of the apples goes into her lunch everyday. Here are some of the pictures I took.

Thank you for reading. Please remember this is Childhood Cancer Month! Please do not let another child have to go through Chemo. Think about making a donation in Ella's honor, or any child you know who has suffered.  
Donate to research here: CureSearch

Blessings~Katie

CureSearch Walk September 10th, 2011

CureSearch Walk
Click on link to see video.

Last Saturday we participated in the CureSearch Walk in Chicago. CureSearch provides funds to reseachers to cure Childhood Cancers like Leukemia. This is a video of the photos we took. All the survivors received a medal and a balloon was released in memory of the children that we have lost. Please consider a donation in Ella's honor to CureSearch.

Thank you to our friends and family that walked with us!

Blessings~Katie