Reflecting and Wishes

Steve and I were reflecting on this journey last night as we met with Ella's Make A Wish granters. It is hard to realize just what you are going through sometimes- you just do what you have to do to get through it. This is the video from our One Year Journey- modified from before.

Ella has asked for a Disney Cruise as her Make A Wish Trip. We are looking at going when she has completed chemo and has her port removed.  Her trip will either be at the end of this year, or next May around her 7th birthday. It is really a special gift to be able to enjoy time as a family with no cancer worries. I am really looking forward to that day.

If you have ever made a donation to Make A Wish, THANK YOU! We are very grateful for your generosity.

Blessings~Katie

Ella and her Dada sporting their poutty faces during recovery.

Ella had Clinic yesterday. It was a big clinic day and Ella had a spinal procedure and chemo. If you have read these post before, you know that spinal day is not her favorite. She knows she can not have anything to eat or drink until after the procedure and that she has to get a needle in her back. This time the night before clinic, she started asking me all kinds of questions that she hasn't really asked before. She wanted to know why they had to put the needle in her back instead of her port. She asked why it mattered if she ate, and why I have 4 eyes when she is done (while she is in recovery and the drugs are wearing off).  All valid questions that I guess I should have known she would ask sooner than later.

Daddy went with us to clinic today, which was such a special treat.  Her spinal didn't go as smoothly as it usually does. It took the Dr. some time to get the needle into her spine. Thank God for drugs. I always cry when she is done with the spinal. I also said a prayer during the procedure. Something about watching her spinal fluid drip into the tube....It is just too much. It also worries me that she was off chemo for over 3 weeks while she was in the hospital last month. I can't help but worry that any break in chemo gives the ALL cells a chance to grow. I know that it shouldn't, but hey- I'm her mom and it is my job to worry!

Her back was pretty sore last night, and she had a hard time sleeping. Also the steroids kicked in and she was wide awake from those. Lack of sleep combined with back pain kept her home from school today, but she is already better and has left me wondering if she should have gone today!

Only 2 more spinals and 1 more bone marrow aspiration left for Ella. This sounds so much better than 262 days left of chemo. We are starting to see the light at the end of the tunnel, and I am really elated!  We got a call from Make A Wish yesterday and they are beginning to plan for Ella's trip. They will be coming to the house soon to interview her and see what she would like to do. She has big plans and 3 different ideas. So, we will see which one she chooses.

Ella's thoughts on not being able to eat or drink today.

Thank you all for your prayers and for following us during this journey.

Blessings~Katie

Sunday February 5th, 2012

It's Super Bowl Sunday and I liked this little performance the best!

Ella Dancing

Clinic this Tuesday complete with Spinal and chemo.

Blessings~Katie

Thursday January 26, 2012

Sitting together in the chair having blood drawn for counts! Green blankie is front and center!

My apologies. I posted to Facebook that Ella's counts went back up, and never posted to the Blog. Bad mommy!

Ella's counts shot from 188 to 600 to...............wait for it.................2600! so she is doing well and back at school. Going back to school was a bit of a transition, but she was Star Student in her class this week and was happy as a clam.  Her teacher even sent me a text to let me know she was all smiles this week.  Pretty awesome! It is like the last month never happened for her. How I wish I could let it go as easily as she seems to. That is one of the reasons I think kids handle this a bit better than adults. We know how things are "suppose to be" and we are disappointed when things are not as we expect them. I think kids have this wonderful "oh well" ability sometimes.  Ella bragged to her class that she got "spoiled" when she was in the hospital, but I have not heard her mentioned once that it sucked that she was in the hospital for Christmas. I know that is the first thing that came out of my mouth when anyone asked me.  So maybe this week I will try to be more like my daughter and adapt an "oh well" attitude!

Bear Necessities 

I got an email from our Child Life Specialist yesterday with this photo attached. Notice that 2 of those cute smiles belong to my girl?  This Year Bear Necessities is using 2 of Ella's images to help raise money and awareness for Pediatric Cancer.  The bottom left picture was taken almost exactly a year ago. Crazy how much can happen in a year. Now, she has this head full of red curls! I am so grateful.

Blessings~Katie

Wednesday January 11th, 2012

Ella had clinic yesterday. Her ANC was almost 600 again! YEA!!!! So, she got the all clear to go back to school. She also got reinstated for chemo.  So after not having any chemo or drugs except antibiotics, she went back on full protocol yesterday and started school today.  She will need to go back to clinic next Tuesday to re-check her counts to make sure the chemo didn't knock her counts back down.

Today, Ella shared with her class that she has cancer. We read the book "Why Charlie Brown, Why" to the class and treated them to doughnuts. Josh and Morgan came with as her support system and to answer questions. She used a duck and a doll to show the class how the nurses administer medicine into her port and she handed out "Cancer Butt Kicker" bracelets to all of her classmates. The hardest part for Ella was when I left. She was doing so well at school and now I feel like she has taken a step backwards. The hardest part for me was saying the words out loud that she has cancer.

When I left I went to the car and cried. Just leaving her there knowing she can get sick again, knowing that she was crying, not knowing if any of the kids would treat her differently now that they know. I am hopeful that they wont. Her class is so loving with each other. They were all genuinely happy when they saw her today, it was very heartwarming.

Tools we used to explain cancer

Thank you for all your prayers and comments. We really appreciate everyone's support! It is finally going to snow here and the kids are so excited. Enjoy the beautiful snow!

Blessings~Katie

Sunday January 8th, 2011- More than a teacher

Meant to post this on Friday. Sorry for the delay!

Ella and I were so happy that it was 50 degrees outside today! Went went over to the forest preserve and gathered items to make a wreath for the front door, just like we did last year when we were stuck inside!  She is in a good mood and we had fun on our walk.  She even let me take a few pictures.

I had a great teacher in high school. His name was Mr. Thompson and he taught history. He was a great teacher in my eyes because he gave you a copy of the test the night before and said "Study this and you will do well!"  To me he was a teacher who in a sea of other teacher seemed like he wanted you to succeed.  Well, it took me till high school to have this great teacher, but Ella has hers now.

Adorable Bunny

Ella's teacher this year has a heart for kids. I know it is a total God Thing that she is Ella's teacher this year.  She has personal family experience with Leukemia and she has been following Ella's story even before she knew she was going to be Ella's teacher this year.  Above is a picture of Ella's Adorable Bunny. This bunny is currently sitting in Ella's desk at school and traveling with the class through the day. This way part of Ella is in class, even though she is not. Ella has not told anyone in her class that she has cancer, but now since she has been out for 4 weeks she wants me to help her explain to her class why she has been out.  Ella's teacher has said yes to everything we have needed or asked for Ella without hesitation. I know Ella is not her only responsibility, so I can't even begin to tell you how grateful I am to have a partner in her education AND her health! It is scary sending your child to Kindergarten for the entire day, but even harder when they have cancer and have spent the last year attached to your hip.  Knowing that any cough or sneeze could potentially be life threatening is very nerve racking.  Knowing that Mrs. K has Ella's back makes it so much easier.

Thank you.

Blessings~Katie

January 4th, 2012- Clinic

Morgan and Ella at clinic.

Ella had clinic today. They were checking her counts to see if she could go off of chemo hold. For the first time she brought her friend Morgan with her to clinic! It was interesting to see how different her personality was with Morgan there. 


It was nice for her to have a friend to keep her company today, because clinic took longer than it should have. All they had to do was check her counts and we were there 3.5hrs. Crazy. So not great news, her ANC (Absolute Neutrophil Count)which tells us her ability to fight off infections is down to about 200. Anything under 500 is bad. So this means she is still on chemo hold, can not go to school and is on lock down until next Tuesday when she goes back to clinic. All we can do is keep her home and do our best to keep her away from any new germs or bacteria. It is worrisome, but there really isn't anything we can do but pray that her counts don't go any lower. Hopefully keeping her on chemo hold will give her body a chance to recover. Her body has been working pretty hard the past few weeks, but her mood is good and that is a good indicator to me that she is doing okay. 


 It has been kind of interesting to see her personality the past few days. She has been off of chemo for almost 2 weeks and no medication at all the past 2 days. You can see just how much the medication suppresses her personality. It will make me a little sad when she goes back on chemo, but only 10 months left! 


 Blessings~Katie