worst day of chemo so far...

Before I get started on our day of Chemo I wanted to let everyone know of some upcoming events to raise funds for the Ellie Fund.

Friday Night is Shop for Ellie Night

Sunday, March 27th: We will be celebrity Guest bar tenders at Nicks Tavern.  12noon – 6pm.  We will be tending bar. Nick’s Tavern, 221 Main Street, lemont, IL > Come for the famous food
12:00 – 2pm Dave (my husband) & Step Dad Dave will be bar tending
2 – 4pm Steve Wunder (my dad) & Billie Chiagouris (my Grandma) will be bar tending
4 – 6pm Kyle (Me) &  Kelli Shoup (my sister) will be bar tending
15% of all sales & all profits above the costs of operation will go to the Ellie Fund
We need volunteer servers please email Terri O’Neil if you can help at [email protected]

Hope to see everyone there.  Now onto our day of Chemo…

What a long day of Chemo today.  We started off doing ok but then we were in the lobby and met another girl going through chemo.  I felt bad because she asked Ellie to play and Ellie just ignored her.  It made me so sad that Ellie is so anti-social.   The best part of the early morning was when Dr. Goldman (oncologist) played beads with Ellie and helped make a necklace.  Ellie also received a special necklace from the hospital.  It’s a program were they get special beads to go on there necklace every time she does something (A Chemo Treatment, MRI, Catscan, Access Port, Blood Drawn, hospital stays, surgeries, etc.)  Needless to say Ellie will be getting several necklaces by the time we are done.   What a great program that a nurse developed to help reward the kids as they are fighting this disease. The picture is of one that they start with it has their name, a fish to represent the current in the water that fish have to fight against & an Anchor to represent the anchor of her family, parents, doctors and everyone that is there to help her.  What a great concept.

Then we went in for our Port access.  Ellie kicked and screamed and kept on telling me she wanted a new family.  Basically telling me she blames me for everything she is going through.  I know it’s easy to blame me for everything but I do need to hold back tears every time she yells at me.  This is not my child.  Well we think we got to the bottom of her mood swings & attitude.  Her one seizure medication causes this behavior in 35% of kids.  Lucky me, Ellie could be one of them (do you hear the sarcasm in my voice).  They are going to start to drop it down but we have to now see a Neurologist to follow her brain due to the tumor.  So EKG here we come.  The day went by quickly for the most part but Ellie threw fits over and over.  I just hope that taking her off the medication will help.  It was time to take her port out and once again she said to me “mommy you are doing this to me, you hurt me.  You are a mean mommy.  I want a new family” I know that this is the medication talking but it still hurts. 

The drive home was better she was feeling better and being sweet again.  Today she handled the Chemo the worst so far.  She was so lethargic and laying around doing nothing for the rest of the day.  I had to even carry her to bed tonight and change her because her legs were weak and she was too tired.  This is the most challenging thing I will ever go through in my life.  I just want to have her come out of this ok.  To put her through all this pain and suffering and not have it work will be devastating. I don’t want to make her life in a hospital if she only has so much time left but we need to fight this in every possible way.  I just pray every night that she will make it through.  Cranky or not I need her in my life.