Lots to catchup on. New update on Ellie... Read to the bottom

This past week we were in California for my sister-in-laws wedding.  I must first say thank you to Dave’s & my family helping us out so we were able to attend the wedding.  Ellie was a flower girl and Jake was a ring bearer.  I was so proud of both of them, they did a fantastic job.  We did have a little drama during the wedding rehearsal.  Jake and Ellie were playing and Ellie bumped her head on the brick wall.  She had a bump the size of a walnut on her forehead within minutes.  I was so extremely nervous; thoughts were going through my head that we would have to go to the ER.  I started to tear up and then my sister-in-law, which works in Pediatric Neurosurgery, came and calmed my nerves. Thank god because I was ready to stress out.  Luckily it just needed some ice. 

The week was so nice visiting with family and friends.  Unfortunately we did have to visit Choc (Children’s hospital of Orange County).  Before we left for California, Ellie’s Platelets were too low to fly so she had a transfusion.  We then had to go to Choc while in California to have them checked again so she could fly home. It was extremely hard for Ellie to understand why she had to go to the hospital on Vacation.  I had a hard time explaining it to her because I have a hard time understanding myself why she cant get a break.  But once we got to the hospital Ellie seemed to handle it well.  It also helped that her Aunt Myrlee came to visit her (she works in the hospital).  Once again I was extremely proud of my little girl, she even filled the test tubes. 

Now onto this week.  Monday we went to the new hospital Lurie Children’s Hospital.  I am going to review the hospital and then I will give you a very important update on Ellie. 

First off I wish the hospital would please abbrivate or come up with a shorter name other than Ann & Robert H. Lurie Children’s Hospital of Chicago.  Come on now it’s a Children’s Hospital.  So I have heard great things about the hospital before we even went to see it on Monday. But, I must say after hearing they spent $488.00 Million Dollars on this hospital I was pretty disappointed and pleasantly surprised by some things.  First off the bathrooms were new.  Yes I know, may not seem like a big deal, but for someone that stayed in the hospital for three weeks strait and a day once a week for over a year now it’s a big deal. The bathrooms at the old hospital were just shy of an outdoor gas station restroom. Yep they were horrible.  These bathrooms were clean and new.  So they got an A+ rating from me.  Each floor was sponsored by a different Chicago Museum.  Twelfth floor is the Chicago Fire Department; they brought in a play fire truck.  One of the Floors had a great aquarium donated by the shed.  Interactive artwork, gardens, and much more from floor to floor. The Elevators up to the 11th floor were filled with buttons that honked, turned on and off the lights.  Kids loved that.  I must say getting into the hospital was quit confusing and a hassle.  First you take escalator up to the second floor then hop on Elevator to the 11th floor then transfer to a different Elevator to complete our trip to the 18th floor the Cancer/Oncology Floor.  Now this floor wasn’t just a little disappointing, it was extremely disappointing.  These kids that have to be in the hospital for a full day once a week sometimes everyday I felt got the short end of the stick.  Oncology floor was sponsored by the Nature Museum.  It was so very underwhelming seemed like there were white walls everywhere, nothing exciting what so ever.  From what I heard from the nurses the nature museum said they didn’t want to over stimulate the kids.  I ask, are you kidding me?  It was so very sad for these kids.  The nurses told me they came into the hospital before moving in and scrambled to get at least an accent wall in almost every exam room. I guess child life is working on figuring out what to do.  But I must say it was a complete disappointment while visiting some of the other floors.  I hate to say this but I miss the atmosphere at the other hospital, it was much more personable feeling and less sterile.  As the nurse reminded me that they had plenty of time to get it that way, but I still say I am disappointed.  Even the playroom was boring and disappointing.  I wish I knew some artists that could go in and spruce the place up.  But anyhow Ellie seems to love the new hospital because we were able to visit other floors were she could enjoy herself.   

On to Ellie medical Update.  Before I began to write this section I had to take a deep breath and compose myself.  We received word on Tuesday that Ellie’s Counts are not coming back up and that we would have to take a step back and decide were to go from here.  It’s very hard to swallow that finally we found a treatment that is working on the tumor but is destroying Ellie’s body.  They are going to discuss Ellie’s case once again in Brain tumor board to determine were we go from here.  They did decide to let her do one more set of the Chemo starting next week as long as her counts are back up by Monday.  We will have to be taking blood and monitoring her counts more closely for this set of Chemo.  If her counts go down too low, they will never come back up again.  I took Monday to be sad and am trying to think positively.  It’s so hard for people to believe Ellie is sick because she skips and acts like a normal kid.  I will have to admit that each time I get bad news, my confidence that Ellie can beat this gets slimmer and slimmer.  Ellie is in great spirits for this is just to complicated for her to even comprehend.  So for now we just wait till next week when she gets her blood drawn again and wait for the brain tumor board to make a decision on the next course of action we can take. 

I also put many pictures below of our fun summer so far, the hospital in California, and Ellie at the Lemont Library today.  We are trying to make the best of this summer even though I have a broken foot and all Ellie’s medical issues.  Thanks again for everyone’s love and support.  Please know just by reading this is so very important to me.