Ella's Birthday! May 16, 2012

My baby is 6 today. When the hell did that happen? I've been moping around for the past few days and last night I finally figured out why.  My youngest child is turning 6. She isn't a baby anymore- she is a kid.  Honestly cancer pushed her from baby to adult for some things and I am angry that she missed out on 2 years of "kid". It's not fair, It's not fair. It's not fair! Guess I am still a kid because I just mentally stomped my feet and crossed my arms as I said this. Okay, I will stop pouting.

Random pics from Ella's first 6 years....

2006

2008

2007

2009

2010

2011

2012

I am overjoyed to be able to celebrate her birthday, and so very proud to be her mom. There is a line in the movie Hope Floats where the grandma in the movie is happy and she says "My cup runneth over" I feel the same way whenever I look at these two smiling at me like this.  Happy Birthday Little Girl! Mommy loves you so very much. All around the world and back again!

Blessings~Katie

Sunday May 13th- Mother's Day

Fear. I feel like I am constantly in fear of something. I know most mom's fear something for their children but when your child has cancer, I think you fear more. Are their counts low? Did that kid just cough in her face? Is she going to get sick now? Does she have a fever? Is this back pain something serious? Why is she dizzy? Why hasn't she been sick in the past few weeks- are things going "too well"? As a Christian, we learn to hand these things over to God.  "The Lord is with me- I will not fear." Psalms 118:6 Well, I feel like I am failing God most days right now, because I look at Ella and I feel fear. Fear that she won't make it to 7. Fear that her back pain is something serious. Fear that her dizziness is something serious. Before cancer, I would have figures it was something small and would pass.  Now I have to balance between feeling like a crazy mom who wants answers now and trusting that God will continue to hold my precious child in his arms.

Ella's mask for the scan and her Birthday Party Dress

Ella showing us how to stay still while having a CT Scan

We could not get the MRI, so Ella's doctor had her come in for an X-Ray.  After talking through it with her doctor, we decided to do a CT Scan instead.  So, she scheduled a CT scan for Friday.  Friday morning we get a call from the hospital.  Our insurance company will not cover one of the scan's Ella's doctor wanted to get done.  So frustrating. This is the first time we have had the insurance company not cover something. Even the insurance person from the hospital sounded so sympathetic for us when she called to tell me.  She said she has a four year old and couldn't imagine what I must be feeling.  Ella doctor scanned half the area she wanted too.  Ella was really great about the test.  She didn't eat for four hours before her procedure and she stayed really still. She wore a sleeping mask over her eyes during the test so she could pretend she was getting some "beauty rest during the scan.  Her doctor let me know this weekend that the scan came back clean, so we need to get an MRI to make sure everything is okay. Now, we have to see if they can move it up because she needs to be sedated for the procedure.  So I wait and pray that she is okay, and that our insurance won't fight us on the MRI.

Ella celebrated her 6th birthday this weekend.  She will turn 6 on Wednesday. She had a Barbie Fashion Party and invited neighborhood friends, friends from school, and Kennedy- a friend from clinic got to come too! the girls came in party dresses and we did make-up, nails, and hair.  They jumped in the bounce house, ate cake and walked the runway.  Ella had so much fun.  It was great to see her laugh and play with her friends.  She walked the runway with so much attitude- it was a little scary!  When did she make the move from "my baby" to "little girl who wants to be a teenager"? I think she changed clothes 4 times during the party.

Ella on the "Runway"

The other cool thing is that she rarely had her blankies around this weekend. She went to sleep with just one of the 5 on Saturday night.  This is such a HUGE deal.  She started to get teased at school by an older girl who told her she was carrying around a "pee pee" blanket. Gosh, this just broke my heart. How do you make a 2nd grader that she doesn't know understand that she has cancer and it just comforts her to have it near. I wish I could sit on her shoulder sometimes.  like a little guardian angel.  Then I could flutter into that little girls ear and explain.  Ahhh, but I think all mom's wish this!

Now, I get to brag about Josh for a minute.  He was in a school Talent Show a few weeks ago. He did a bow form and we were all very proud of him.  He got a letter sent home with him last weekend asking him to preform this Wednesday in another Talent Show for the school.  This one benefits the Ronald McDonald Chicagoland Charities. Ella is at Loyola, which is a Ronald McDonald Hospital. Now, we were going to say no because it is on Ella's Birthday, but Steve and I decided to talk to them and let them choose.   When we explained to them that it was for RMCH, Ella said "He has to do it to fight cancer!" and Josh said "Yes, I want to do it!".  So, this Wednesday he  will be preforming in another Talent Show.  I'm so very proud of both of them.  It is such a grown up decision to make for 6 and 8 year olds.  This one was one of my best Mother's Day gifts!

Blessings~Katie

Wednesday May 9th, 2012- Frustrated

Frustrated. It might be narrow minded of me not to be overly concerned with the "Big Picture" of our health care system, but today I couldn't help think about how it might be affecting us.  Ella has been experiencing some medical issues that can not be explained.  Last week I had to take her into the pediatrician. She was complaining about burning when she urinated.  After they ran cultures that described it as "non-specific irritation". Really? The doctor actually told us to have her drink apple/cranberry juice.  He said the cranberry juice would be helpful.  That stuff has less than 2% real juice in it, so I couldn't help but feel he was just giving me an answer because he didn't know what else to say.
She has also been having back pain and dizziness. The back pain had her up most nights last week, so her Oncologist said they would schedule an MRI to make sure everything was OK. It took the MRI department over 2 full days to call me back and they scheduled it for May 30th.  23 days to get an MRI for a child? Seriously???  How does this make sense? It is not like we live in a small town with 1 machine that is shared by several communities. We live in Chicago and go to a major hospital!  God forbid there is something really wrong. I do not plan on waiting 21 more days to find that out.  Looks like I get to be "That Mom" again.  She is going in for X-Ray's tomorrow, but her Oncologist already told me that it probably will not show anything unusual with her bone. AHHHH!!!!  Today, I feel like our health care system is not working.

This weekend we are celebrating Ella's sixth birthday. I tear up just thinking about her birthday because I feel so grateful that she is here for me to celebrate.  Ella is six.  Ella has made it to six years old.  Ella will get to laugh and play and celebrate the day with her friends.  I will find joy in the smile of my happy child.  My happy child who is still fighting cancer.

Blessings~Katie

Wednesday May 2nd, 2012

Love this one.

Ella had clinic on Tuesday, and this time Daddy came with us.  This was not a fun one.  This time Ella couldn't eat because she had a spinal and Vincristine.  Every three months she has a spinal. They check to make sure the chemo is doing it's job, and the cancer is staying out of her spine and brain.  This is the visit that does me in. This is the one that I can't handle.  Seeing her lying there and not responsive while they do the spinal brings every kind of bad thought to your mind, and there isn't anything I can do to stop the tears from escaping my eyes.

She was a trooper.  I love her nurses and doctor.  This time both the doctor and her nurse said " I love you" to Ella as she was leaving. Lets me know that they are vested in her and her future. We take care of the people we love right?

She missed school today because she is having some back pain where her spinal was. She is also sound asleep and it is only 5pm. 5pm, the day after a spinal,  is an important time in my head. If they found anything in her fluid, they would have called by now. So I can take a deeper breath tonight and feel like she is still doing well.

Ella has 6 more months of chemo left.  A few people have asked us if we have started counted down yet, but Steve and I aren't ready to. 6 month is what the treatment length is for most adult cancers.  She has been doing this since August of 2010. That seems so long ago. She still has 6 months of chemo, 3 procedures and 1 surgery left.  We are going to wait until we are a little bit closer to the end to count down.  When Ella starts asking, then it will be time.

Last night after Josh said his prayers, he said he wasn't any good at sparing (Karate). I told him all of us are given gifts from God, and we just need to use then and practice using them to become better at the things we are willing to work at.  I told him he was good at kicking, and that he can use that for Sparing.  He asked me what Ella's gift from God was, I told him she was strong.

Blessings~Katie

Tuesday, April 24th 2012 More Hiccups

So, Ella's fever came back, and this time it went to 101.8. the magic number is 101 for calling the doctor, so we made the call.  Even though they confirmed from Friday's clinic visit that she has the flu, they had her go in for antibiotics.  It is more of a safeguard.  The virus can drive down her ANC and make her more susceptible to bacterial infection.  The Dr. knows I am against this because the last 2 times this has happened the antibiotics caused C-Diff and a hospital stay for Ella, but it was necessary.  So, we headed down to Loyola's ER.  Steve and Josh had left to spend the day together and I couldn't get in touch with him, so Aunt Carrie met us at the ER.

Ella wearing a mask in the ER

The one thing I still do not like about our hospital is that it is a school.  So we got a resident in the ER, one that had a cold and was wearing a mask. He came in with this little notepad and started to recited back to me what the doctor told him. It think it is just that most of them just do not instill any confidence that they know what they are doing and have got it covered.  So, I became "That Mom" and told him before he could read it off his pad and asked to make sure someone with experience accessed her port. The nurse was experienced, but she had trouble accessing Ella's port. Then they tried to take it out of her arm, and failed. She fished around for about 5 minutes and nothing. I can't tell you how proud of my girl I was. She didn't cry at all.  Many thanks to Aunt Carrie who brought the Muppet Movie and it kept her completely occupied.  So, then they went to the other arm.  Ella was a trooper.  She had another nurse come in to draw the other arm and that nurse got her port access to work and got it out of her arm.  Ella's counts were still good, so her body is fighting it on it's own. She got the antibiotics and we were able to go home.

On Monday we were scheduled to go back to Clinic, but her blood cultures all came back negative for bacterial infections, so we got to stay home.  Her fever is gone for now and she is in a good mood.  Fingers crossed!

Ella today with Jesania

Thank you to everyone for all their prayers!

Blessings~Katie

Saturday April 21st, 2012

We had a little hiccup this week in Ella's treatment.  She got a low grade fever on Thursday after school.  Then she woke up around 3am with a 100.8 temp.  This meant no school for her and a trip to clinic in the am.  She was so angry about missing school.  There was a special "Camping Out" event that she was going to attend and  this meant she could not go. She started growling instead of talking and hitting things.  

Since this clinic trip was unplanned, it did not follow her normal routine.  Daddy usually puts on the cream that numbs her port, this time I did it.  Someone usually accompanies us to clinic, this time we went alone.  At least one blankie comes with, and we forgot blankie.  It was not the best way to start a clinic day.  They tested her blood and checked her counts.  They also checked her for the flu virus.  Her symptoms were headache, diarrhea, runny nose and low temp fever. Her ANC came back at 1000, which is rock star status for a cancer kid, so she got the all clear to go home.  By 5pm her doctor called and said she tested positive for the flu.

By 7am today her fever was gone.  Since she missed the "Camping Out" event at school so I put up a tent in the living room and an air mattress for Ella.  I made a huge bowl of popcorn and we watched The Parent Trap in the tent and played UNO.  She played and laughed most the day.  As long as the fever stays at bay, we should be in the clear.  Thank you to everyone for your prayers and well wishes.

Blessings~Katie

Tuesday April 3rd- Clinic

Today Ella had Clinic.
She was happy that her favorite Doc was back and she knew she would be getting an Easter Basket today.  Today Josh came to clinic with us.  I think as more time passes, and I let him know that Ella won't be going to school because she has chemo, that he thinks she is off having fun and going to Build A Bear, and not so much the getting chemo part.  So, this time he asked if he could come.  He was actually really good about being there for her, he colored princess pages with her and snuggled with her in her chemo chair.  He also asked Carrie a lot of questions and hid his eyes when it was time for her port to be accessed.  I think she wanted him to see how brave she is because she barely flinched and didn't cry at all when they inserted the needle.  She was very brave.  Her counts were good, but her temperature was a bit elevated at 99.3. You wouldn't know that now because she is outside as I am typing yelling "lala, lalala" over and over again while running around the yard.

At clinic they had a few "No More Chemo" posters out that the nurses and Doc's were signing in preparation for some kids going off chemo.  It made me happy for the kids, but also because we are getting close to the end of this journey.  I think I feel happy, but also pretty nervous.  I don't know that I will ever feel like she is "safe" from it. I wonder what our new "normal" will be like and how we will all handle it.  I kept her home from school on Monday because she was shaking and said she felt to "Wobbly" to walk.  But, after 2 hours she was fine. I don't know if I will ever be able to look at a bruise or feel her head and not have my mind go to cancer, and honestly- that sucks. I know I should give up that fear to God, and let him worry about such things, but it is really hard to do.

Ella is already counting down the days till her birthday.  She is requesting a Barbie Fashion Show Birthday with nails, makeup and hair.  I am so excited to celebrate with her.

Blessings~Katie