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

Monday May 23rd, 2011

Ella had a great week. She played, laughed and smiled. What else can we ask for. I can tell you the most ridiculous purchase Steve and I have ever made is this bounce house. It is also the best thing we ever did! Friday night all you could hear in our back yard was the laughter of children. We cooked out and the kids bounced and played for hours. It is definately summer!

I had a friend call me this week, the funny thing is that she didn't mean to, but I'm glad we had a second to chat. She asked me when I thought I might be able to take a deep breath again. I was honest with her and said never. This, how it is now, is my new deep breath. I don't think there will ever come a time where our guard is down and and we don't take every illness or cough very seriously. She has a series of bruises on her leg this week, and I could not help but think maybe her counts are low. I am sure there will be times, when we breath a little deeper than others but, at least at this point, I can't imagine breathing any deeper than I am at this moment. this week I am praying that God will help me not to be fearful, and to just have faith in his plan for Ella.

I wanted to share Ella's 5year old photos with you. Steve and I took these together. I think they show her personality, and they also show Joshua's love for his sister. Here are a few, but you can see them all at the link below.

Have a blessed week.
Blessings~Katie

http://clients.316photos.com/Personal/Ella-5yr-old-pics/17179168_tGbfNT#1302463869_q2XVZhM

Monday May 16th, 2011 Ella's Birthday

I know it probably goes without saying, but this birthday had a whole new meaning for our family. Ella turned five today. Ella, lived to be five years old, have a birthday party, eat birthday cake, and smile with her friends. Ella is still here with us. I can tell you that tears are streaming down my cheeks as I type because I feel that we are so blessed to have her here with us still.

Ella's Birthday party was a gift to us this year in more ways than one. There is a foundation called Bear Necessities that does a mini gift to children with cancer. Ella decided months ago that she wanted hers to be a Build A Bear Birthday party, and so it was. We are very grateful to the Bear Necessities Foundation for their generosity and support.

Ella's Birthday party theme last year was rainbows, and this year she has been really big on the peace symbol, so it was very fitting that build A Bear has a new Peace and Rainbow bear that Ella fell in love with for her gift this year. She had so much fun with her friends and when the party was done, the kids all went out to the front of the store, gathered around Ella and sang happy birthday to her. Even one of the BAB employees teared up as everyone sang. After the party we went to Rain Forest Cafe for dinner and the kids got to enjoy the build A Bear cake that Steve and I made for her.

Ella at the Rain Forest Cafe

Ella's cake

This cake was definitely a labor of Love! Ella wanted it to look like the Valentine's day BAB Box, so we did our best to copy it for her and she was so surprised when she woke up on Saturday and saw it on the counter.  Josh was really sweet and said" Ella, it's the perfect cake for you!"

Our family came in from Wisconsin not only to celebrate Ella's birthday but to watch Josh at his Karate Tournament Saturday Morning. He took 2nd place in Self Defense. I am so very proud of him. He was so very nervous. I don't think he moved a muscle except for when it was his turn to compete. I think he was relieved when it was all over.

I just want to say that Steve and are are so grateful to everyone who was a party of Ella's birthday celebration. Weather you sent a birthday wish, gift, or were able to be a part of her day- we just really appreciate your love and ability to spend this joyful day with us! THANK YOU ALL.

Ella and her Rainbow Peace bear- Yes, that is what she named it!

I also wanted to mention that we saved some of Ella's hair before it all fell out, and this week we compared the color. It is the EXACT same color it was before! Which from what our Onc says is rare. Ella was so happy. She really wanted her red hair back, and I am happy that at least that stayed the same for her!
Have a wonderful week my friends.
Blessings~Katie