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

Tuesday June, 28th 2011- Whining, Walkers and Warriors

Well for all the complaining and whining I heard from Ella about not wanting to start school, she actually likes it! I wouldn't say love, but definitely like. She made 2 friends right away and by day 2 was looking forward to going the next day. When we got to school for orientation, all I could think was "which one of these kids is going to get Ella sick?". On day 2 I got a call from the principal that one of the girls Ella was playing with was sent home with a 102 degree fever and stomach pain. I held my breath when she said 2 more kids got sent home too, but Ella never got sick- she was totally fine. So far school is going well.

This beautiful group of people represent the "Cancer Butt Kickers Team" at the Rely for Life. They either walked, or were support for our group. I am proud to say that our group was one of two that actually walked all night. At one point around 3 am there were only 12 people on the field- and 6 of them were from our team! Also a huge THANK YOU to everyone that support The Relay financially. We had 3 surprise supporters from Noah's Warrior's that joined us to walk in memory of Noah- which was awesome. Becky and Will lost Noah in April and I was honored to have his family hang out with us during the Relay.

Ella had clinic and chemo today. This was the first time it was just the 2 of us at clinic. Her counts were ok. Her liver function is elevated at 8 times the normal function, but has a great capacity to repair itself. So, we watch and wait. Her white count was low too, but good enough to get chemo. Today, she was very brave at clinic. She didn't cry, and at the end she cracked a few smiles and told her favorite nurses all about her sticky feet. Tomorrow, she goes back to school!

We were able to go spend a few days in Wisconsin with family and take our family photos for the year. We went to Devils Lake which is one of our favorite spots. That is where Steve proposed and his family lives 4 minutes from the park.  When I first looked at the photos, I thought the background was so beautiful- it didn't look real, but it is! Here is the one we all voted as our favorite.

Yes, silly faces. Enjoy your summer. Thank you all for continued prayers and comments.
Blessings~Katie

Tuesday June 7th, 2011

Sorry I am late in posting. Things are getting busier now that summer is here. Josh still has school until the end of next week, and he is desperately waiting for his summer vacation to begin. The week following that, Ella will begin Kindergarten readiness camp. Her school requires 2 full weeks of full day school to make sure the kids are ready for Kindergarten and to see where they are emotionally and scholastically. So far I am so happy with the school. they are really doing everything in their power to make sure Ella has a positive environment and experience at school. I feel like she will be in good hands, but I know she is scared. She won't know anyone and will be leaving her comfort zone for a totally new environment. I'm nervous for her and doing my best not to let it show to her, and to try to get her excited about the fun things she will be doing. I will keep you posted on how that goes.

Ella did better towards the end of the week. she didn't vomit after clinic and her tiredness only lasted a few days. Knock on wood, she is doing really well. As I type these words she comes running out of her room crying....ahhh.  I think we are going to go down to once a month here on the blog, unless there is something going on that we would like to share. Hopefully it will be only good and positive information.
Thank you all again for your support during this journey. I can tell you from my point of view, that just feeling like someone is listening when you need to say something (or reading), is so therapeutic.  It helps you to feel like you are not alone, like others are on your journey and standing by your side. So thank you to the friends I know, and to the ones I have never met. Since Ella was diagnosed, this blog has been read almost 30,000 times. That's like 30,000 hugs and prayers. The gratitude in my heart is overflowing and words say quiet how I feel.

Here is the link for the Relay for Life
and here is the link for the Cure Search that our entire family will be doing in September.

Blessings~Katie

Monday May 30th, 2011

Happy Memorial Day. Hope you all had a wonderful time with family and friends this weekend, and took time to remember those who are serving, and have served.
Thanks for you patience, sorry this post is late.

Ella and Josh had a great weekend. they got to play in Wisconsin with their cousins all weekend, and they were just go, go, go! We went up on Friday and took our time, going through Madison. It was a really nice "family" weekend. Steve and I ran a quarter Marathon on Sunday and got to hike a bit through Devils Lake. The cousins just played all weekend. They went to the movies, park, had a Lemonade stand at Auntie Becky's.  This is probably the only time I wish we had about 4 more kids. When I see them all together and we gather all 10 of us around Grandma's table to eat together, then I want more kids.

Ella had clinic on Monday. This was not one of her better days. She had a procedure scheduled so she was not allowed to eat. She threw up in the car on the way to clinic, and cried. Grandpa switched places with me and drove to clinic so I could sit in back with Ella. When we got to clinic they were busy! Her labs came back good, labs are always a concern especially after traveling. The only count that was a bit off was her liver, so they are just going to keep an eye on it. While we were waiting for Dr. Sarvida to come in and do Ella's spinal, she fell asleep on my lap.

As soon as her spinal was done, she threw up again. So they finished her IV chemo and we stayed at clinic longer to make sure she got some anti-nausea meds before we left. She didn't eat much the rest of the day, then around 8pm, right when she had to have her meds on an empty stomach, she said she was "Starving". Oh, steroids started again yesterday. She she was up until 10pm last night so we could time her meds out and she could eat.

She is doing much better today. She still seems tired, but better. Her little body went through a lot yesterday.
If you are in the Schaumburg area, please join us at Noodles and Company on Thursday between 12-4pm for the Cancer Butt Kickers Fund Raiser! Leave me a message here and I'll email you the flier you need to take with you. If you bring it in, they will donate 25% of the sales to our Relay for Life Team- Cancer Butt Kicker, Kickn' for Ella and Carrie!

Blessings~Katie