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Thursday, May 31, 2012

Thursday May 31st, 2012

MRI came back "Beautiful" as Dr. S put it!  They are attributing all her leg and back pain to long term use of chemo and steroids plus  growing pains.  Their recommendation was to start doing yoga with her to strengthen her back and legs.
Big thanks to everyone for all your prayers.

Wednesday, May 30, 2012

Wednesday May 30th, 2012 MRI

Usually when I sit down to write the blog and update everyone on how Ella is doing, I have a starting point in mind, or a key point to get across.  Right now I feel mentally drained and don't even know where to start.  I feel like I've been repeating myself for the past few weeks because it's still the same issues that are not resolved.  So forgive me for restating that I am still frustrated, mentally drained and tired of wondering what is really wrong with Ella.
Ella got this idea from her new friend Kennedy!

I think maybe I am too sensitive to when things go wrong, so I want to be sure to be grateful for the things that went right today.
Things that went well:
Grandma and Grandpa came to clinic/MRI
Our Nurse called the MRI department and got a more accurate time for her to be NPO (without food). Originally they said midnight and her test wasn't scheduled until 1:45pm.  She is 6 and on steroids.  That is 14 hours w/o food or water. She got to eat breakfast at 6:30am.  Thank you Nurse T!
We took Ella to the zoo before clinic to help ease her nerves.
Clinic accessed her port and not the MRI department.
We arrived early for the MRI and they were ready for us.
Ella wore her sleeping mask for the MRI and it made her feel better.
We spent some time talking with Child Life.
Ella's Doctor really cares about her, and me.
Traffic on the way home from clinic was "light'.
Grandma and Grandpa at Clinic

Things that could have gone better:
The spring on the garage door broke this morning as we left.
Every school in the area was at the zoo today.
The MRI team had a problem with Ella eating breakfast and gave me a little scolding and speech to  remember to not feed her after midnight in the future.
I was not allowed to go into the MRI room with Ella.
The MRI team was not clear on where to wait for Ella to be done.  They told us it would take between 2-3 hours to complete the test and after 1:40 minutes they called my cell phone asking me if I left the building because Ella was awake and screaming for me.  This statement made me feel like shit.  Like I would actually leave the building while my child is under.  Didn't you just have to talk me out of demanding to be in the room with her for her MRI? All I could think about was my baby hysterically crying because I wasn't there.  This is not a good feeling.  There isn't much I can do for her through this journey BUT "be there", and I missed it.
The MRI team left Ella in her PJ's and while under, she soaked them.  Leaving her with no clean clothes or underwear. This might be something to mention when calling the parents to go over the procedure? Maybe? I probably should have thought about it when they asked if there was metal in her PJ's.
Ella had to get medication to calm her when she woke up and I was not there.
They gave us a boys blue hospital gown with rockets on it for Ella to change into and my princess had a melt down. After being called a boy when she lost her hair to chemo, she will not dress any other way than "girly".  Also, this was not an discussion I wanted to have with a 6 year old who was coming out of anesthesia, was soaking wet, trying to balance her in the bathroom while wiping her down and holding her blankie and her at the same time.  I took off my shirt and gave it to her to wear as a dress and put my zip up hoodie on. By this time it was 4pm and clinic was still so busy we waited another 30 minutes for chemo. That really isn't so bad, but at this point I really needed to get Ella to eat and I desperately wanted the day to be done.
The MRI team had to access her through her hand and her hand was swollen and sore to the touch all night.  She wouldn't even lift it to eat, and this girl was HUNGRY, so I know it must have hurt.
I desperately wish I could have said this long prayer that would really express my feeling to God about being with Ella so she wouldn't be scared, but all I have been able to squeak out the past few days is "Please be with her and let the MRI come back clean". At least I know that He knows all my unspoken words and thoughts.
Ella going in for the MRI

Thank you to my friends and family that keep lifting her up in prayer.
I ran a half marathon this past weekend.  Whenever I felt like I couldn't make it, I just repeated "If Ella, Carrie and my Dad can out run cancer- I can do this."

Results should be back tomorrow.  Dr. S is confident that they will be fine- which is great, but answers would be nice too.


Thursday, May 24, 2012

Thursday May 24th, 2012


That's what Ella's doctor told me this morning.  She said Ella's X-Ray's came back great and you could even see growth lines in her bones.  Which means it is very possible that this is a case of growing pains.  Yes, growing pains.  I told Steve I feel foolish if that's what it is. I've been scared and imagined every possibility in the past few weeks from Ella just not wanting to go to school to tumors forming in her back and legs.  When I prayed last night, the only thing I could even say is "Please let her be healed".  Steve sat down and told me there was no reason to feel foolish.. That when a healthy kid gets a fever they call the doctor, we have to go to clinic and pack and overnight bag.  He reminded me that we have a whole different playbook right now and that the normal "kid" rules don't apply to us.

If you don't know Steve and I, here is a little insight.  Steve is calm, patient, a thinker. He NEVER cries, not because he doesn't care, but because he is always thinking about how to fix the situation or be practical about it.  We are a team. I am so very grateful for that.  One of the reasons we make a good team is because we are opposites when it comes to  the emotional stuff.  I'm the one freaking out and worrying about ever possible worse case scenario, and Steve sat in the clinic room as cool as can be yesterday. He is really good at taking the situation for what it is at that moment and applying it to the "Big Picture". I'm more of a "Just in the Moment" kinda gal.  So, we balance each other when it comes to stuff like this.  Steve is my rock. He came with yesterday because he knew I needed him.

So, Ella went to school today with some more Tylenol and we wait for the MRI next Wednesday to see if we can figure out her back pain.  Maybe that's growing pains too?


Wednesday, May 23, 2012

Tuesday May 23rd, 2012

Freaking out.

I think that is how you would best describe how I am feeling today, although Ella's doctors might tell you that is how they would describe me for the past 2 weeks.  Ella's CT Scan came back clean, which I am grateful for but also just wished we had some answers as to why she is having back pain and leg "wooblies" as she calls them.  They were not able to get a closer date for Ella's MRI, despite Dr. S's best efforts.  So now we have to wait another entire week for the MRI.  In the meantime yesterday Ella started having pain in her right leg.  She didn't have a fever, so we gave her some Tylonol and she went to school.  When she got home she said it hurt all day and stayed on the couch most the night.  She woke up in the middle of the night because it was painful and by morning she wouldn't walk on it.
This time I had Daddy call the doctor. I knew they were tired of hearing my voice.  They had us bring her in and Daddy came with for moral support.  He knows I am at the end of my rope.  I have the worse stress headache right now and I know I won't be going to sleep anytime soon so I'm sure it will be hanging on to it for a bit.  They checked her legs and muscle strength.  This time she cried pretty hard when her doctor manipulated the leg to check for pain.  I knew he had to do it, but it took every bone in my body to not knock him out of the way once she started crying.  They sent her for X-Rays and they took 6 X-Rays of her hip and leg.  Ella brought her sleeping mask in for the X-Ray and she laid really still while the technician took the pictures. Now, we just wait for results.  They are checking for loss of bone density due to chemo and heavy steroid use. The doc also mentioned "masses" and gave me a fricken heart attack, but he said it isn't likely. Oh God, please don't let it be likely!!!

I'll update when I know more.


Wednesday, May 16, 2012

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....






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!


Monday, May 14, 2012

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!


Wednesday, May 9, 2012

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.


Wednesday, May 2, 2012

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.