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

Tuesday August 30, 2011 1 year down, still too many days to go.

Ella August 26th, 2010

It is so hard to write this. Never in a million years did I ever think someone would tell me to hold my child down so they could put a chemo filled needle in their chest. The words "My child has Leukemia" still require me to choke back tears while at the same time I say "but, she is doing really well". I don't mean to sound un-grateful, and I'm not, but this was a hard week.  There are a million ways that I want to reflect on this past year, and they are all stuck in the middle of my chest.

This song has been with me this week as I reflect on Ella and our families journey. Gungor "Beautiful Things".

Romans 8:28 states that "all things God works for the good of those who love him, who have been called according to his purpose".  I believe that some how God will use this for good, I just can't see it yet. I am grateful that Ella is still here with us today. Tears flow as I even type this sentence. When I kiss the top of her head and tell her I love her, I say it now with more purpose that I ever did. It is so important to me to make sure she hears me and understands that I love her with everything that I am.  She is stronger than she will ever realize. Steve reflects often on the fact that she trusts us unconditionally. She has never questioned one treatment. She always does what we tell her needs to be done. She shows us unconditional trust all the time.


To celebrate we had friends and family over to enjoy some "Kickin' Cancer Butt" cake that Steve and I made. It was great to hear laughter all night and hear everyone talking. This year taught me a lot about my own friendships and the kind of people we have around us. We are so very blessed.

Ella and her "Butt" cake.

So now that I have typed out how I feel and erased it a few times, I think the best way is just to show you what Ella has been through. It is SO amazing to me that she smiles as often as she does. Since my children were a just a thought, all I prayed for was their health and happiness. She sure is a happy little Ella.


Ella starts Kindergarten in a few weeks. She isn't happy about it, but it is mostly the separation anxiety that she fears. For the past year she has had a lot of mommy time and that is about to change. We have tried to slowly get her ready for this, but it will still be hard. I have met with everyone at her school, and they have been WONDERFUL! I feel so lucky because I have heard so many stories.....but her teacher is awesome and is very familiar with ALL. I know at some point she will get sick at school, and that does scare me, but I so desperately want her to have a great school experience. Honestly, I also desperately want to have some time to myself. I feel selfish for even saying it, and I know I will miss her and worry about her, but it will be nice to not have my 5 year old attached to my leg for a part of the day.


Ella's last chemo was a little rough. She had some back pain for 2 days from her spinal and I kept her home from school. She also has a cough and stuffy nose that will not go away, but thank God- no fever.
Link to Ella's video on You tube:http://youtu.be/nweN9d5cTiI


Thank you for following Ella's Journey.


Blessings~Katie

Thursday August 25th, 2011

Tomorrow is the official day of Ella's Leukemia diagnosis, but tonight is the night we were told our baby "most likely" had Leukemia and Ella and I spent our first night in the hospital getting a blood transfusion. I feel like I am losing my memory most times. If I don't write something down, chances are I will forget it - this I think is permanently burned into my memories.

I watch her sleep all the time. She sleeps, I cry and pray. I still ask why. I still think it is not fair. I still pray that she won't relapse or get sick.
Tomorrow we are having a party to celebrate Ella's 1 year of Kickn' Cancer's Butt. I will blog again after the party.

Blessings~Katie

Wednesday July 27th, 2011

 We were able to take a one week vacation over the 4^th of July so we took the kids up to Door County to go camping. It was really nice to spend time alone just hanging out and doing fun things. The whole time we were gone, the fact that Ella has cancer only came up one time. It was a little challenging to give Ella her meds, and when we realized we forgot to bring the strawberry syrup we use to flavor her meds we did get slightly panicked. Luckily, my smart husband came up with the idea to crush Tic-Tacs to sweeten it up. It totally worked and it is her new favorite!


Ella had clinic yesterday. Josh, Grandma, and Grandpa all got to go to clinic with us. It was nice for Ella to have so many distractions on a clinic day. Her counts were better than last month and I was so happy when they said her liver function went slightly down and not up! It is still elevated, but I was thanking God when the doctor told me. I know as a doctor it must be hard to be in this field, but I can tell you how grateful I am for a doctor that takes the time to talk to you and LISTEN to what you are saying. thank you Dr. Salvida!

I had to take Ella in to get an eye exam for Kindergarten last week. When I made the appointment I told them that she has cancer, just in case it changed anything about the way the doctor examined her. When I got there, I spent a good 10 minutes filling out the forms listing her medications and condition.  The doctor walked into the room, appearing to be reading the paperwork that I so meticulously filled out and said “ So, I see she is on no medications and is in perfect health!”. To quote Friends “Seriously!”. 

Ella also began going to school 3 days a week and she started cheer leading 2 times a week. We are working on trying to help her to be more social with kids her age. This past year she has spent a lot of time with adults and missed some of those group social skills that are learned at this age. So far she is not happy about the changes, but we are trying to encourage her to stick with it and make friends. This week she had Summer Adventure at church She made this craft, and I just wanted to share. She drew a picture of herself on the stage. I love that she drew herself smiling.

Her 1 year anniversary for being diagnosed is August 26th. I am so grateful that she has made it this far, but this day feels like it is looming to me. I am not looking forward to it at all.

Blessings~Katie

Thursday July 14th, 2011

I know it is not a clinic day, but I just wanted to vent. Ella did have a doctors appointment today, for Kindergarten.
First, this appointment was hard because the last time we were in this office, the doctor handed me a script for Ella to be tested to "Rule out Leukemia".  This was the first time anyone had actually said what was being tip-toed around for almost 3 weeks of testing. This visit brought up a lot of feelings. Ella's one year anniversary of being diagnosed is next month. I am not sure if I feel like celebrating or locking myself in a room and crying. If I do lock myself in a room, good chance I'll either be holding on to Ella, drinking a glass of wine, or just crying and waiting for the day to pass.

We had the very first appointment of the day. I did this to ensure that we would not be sitting in a very full waiting room that  is full of sick kids. Somehow with us having the first appointment and knowing the doctor walked in right before us, we still waiting over 25 minutes for him to come into the room.  Now, I have friends that are doctors and I spend a good deal of time around the medical field, but why some doctors feel there time is worth more than their patients is a mystery to me. I hoped it was something pressing that was keeping him, but I could hear his conversation on the other side of the door. Luckily, Ella and I are use to making time pass in small rooms. This visit did make me more grateful for her team at Loyola.

We went through the usual, stick out your tongue, let me look into your eyes, press on your belly.  Considering her drug regimen for the past year -she grew and was in the 75% for height, eyes look good, weight is okay too. The thing that was frustrating was that I had to fill out a standard TB (Tuberculosis) questionnaire.  One of the questions was is your child around someone who is going through chemo. My first thought was to Ella's friends. I had no idea that her being in chemo could in anyway affect their health.  Second, I didn't realize that chemo would make her more susceptible to TB(specifically). So I answered yes. The doctor then informed me that Ella would need a TB test and that he still wanted to give her the polio vaccine. Now, before Ella was diagnosed, I took every word my doctors said to heart. I questioned nothing, always assuming that they had the education and the knowledge that I did not. Now, I question, not only to make sure I understand, but to make sure that she stays safe. I told him that I was uncomfortable with this because her oncologist said "No Vaccines". He said that was only "Live" vaccines.  I told him that I still was not comfortable with it because if her ANC was low or her counts were off, the TB test wouldn't heal right anyway. Finally he agreed to call her Oncologist and verify "to make me feel better".  I love Ella's team. They answered the call right away, and guess what? No vaccines for Ella. I guess I was just frustrated that he was more concerned with what she "might" get, than what she DOES have.

On a brighter note, the Charles Tillman Foundation is holding a lunch in Chicago this Sunday for mothers of critically ill children( http://www.charlestillman.org/news_events.php?nID=17), and I have been invited. I am looking forward to meeting other mom's who are walking down this path too. Maybe they can help me mentally get through Ella's one year anniversary.

Blessings~Katie