Clinic- March 6th, 2011

Waiting for chemo in the super hot waiting area.

How can this beautiful face have Cancer?

Ella had what we expected to be an easy clinic visit. We picked up Aunt Carrieat 8:30am and made it to clinic a few minutes before 9. Everything was running smoothly....was is the key word there.  She got called back at 9:27 to pull blood, spent 5 minutes with the doctor, then didn't get chemo until 12:20. To rub a little salt in the wound, the thermostat in the waiting area read 91 degrees! The room is a wall of windows and it was a really sunny day for March. When we did finally get called in the back, we were the only ones there. I was fuming, so it was a good thing Carrie was there. She kept Ella laughing and distracted.

Ella waiting for Dr. Manera

Her ANC is 1200 and her weight went up to 48 pounds plus she grew another 1/4 inch. All good, but they had to increase her chemo because her body mass changed.  Steroids are already hitting her hard and she couldn't sleep last night. She missed 1/2 a day of school this morning to catch up on sleep a little, but that's okay. I did a photo session while she rested then took her to school.

Side note. Steve's cousin had a baby in December and baby Ezra was just diagnosed with Tuberous Sclerosis. This causes life threatening seizures and the medication to control them can cause brain damage and damage this poor babies other organs. Please pray for Ezra and his family. 

It seems like I hear about a new child being diagnosed with a life threatening disease every week. It just breaks my heart a little more each time. This is where our faith is tested. God has a plan for everyone, it is just hard to understand how a good plan can start with a child going through so much suffering.

Blessings~Katie

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