Sorry I have not written, things have been really busy. We have been nonstop celebrating Ellie’s birthday for the past four days, (excluding today). She has had a blast making cookies, bowling, Chuckie Cheeses, etc. Thanks to my family who have been spoiling her rotten. Well maybe we have also a little. It’s hard not to when we are so excited just to be celebrating with her.
We started celebrating her birthday with a few friends at the bowling alley, and then we continued on to her bear hug with a few of her classmates from school. She got to go and bake cookies for her birthday. Then we rounded out her birthday with a Monday night of fun with Grandpa at Chuckie Cheeses. Oh yeah I forgot to add that Dave and I took her out to dinner to her fav. Restaurant as she calls it “cowboy place” which is the Texas Roadhouse. She was all smiles. Now you can see why I have not been able to write. Every night we got home we were exhausted and still am. We also had Jakes gymnastics recital this weekend. I was so proud of him. I am so lucky my sister watches him while we go down for chemo every Wednesday. She has been taking him to gymnastics and he is loving it. We are taking a break for summer but I hope that he will get back in it after summer. He has been such a joy and a great laugh when needed. I love my little guy, I’m so proud.
Today was a big day for my Ellie; we went downtown to get her first MRI since starting Chemo. She was also part of a trial drug for MRI imaging. She is the first child, first at the hospital out of nine case studies they are trying to put together. This little girl likes to break records and have lots of firsts at this hospital. I was really proud of how well she did considering what she had to go through today. We woke up at 5am, got ready and left the house. Only to sit in traffic for a 1 ½. When we arrived we met with the case study manager, checked in at imaging, and headed up to a room. Ellie was accessed through her port after crying for a while she finally calmed down. This was the easy part.
We filled out consent forms and answered the same questions to three different people. That’s always fun going through her whole medical history three times in a row. We had about five to six case study workers, nurses, and doctors in the room the entire time. She was defiantly well taken care of. The problem was they had to do an EKG for the case study. Well the drug company sent the hospital a brand new EKG machine that they wanted them to use on Ellie. So they put all the stickiest on (might I add these were extremely sticky stickers, she still has glue on her) and set it all up only to find out the machine was not working. They even tested it the day before we came and it worked. So after about an hour of trying to fix the problem and Ellie wasn’t to move during all this. Needless to say she got a little restless and irritable. Not only were they pocking and prating her but she had not eaten yet because they cannot eat 8 hours before sedation. Finally they made a discussion to use their own EKG equipment so that we could get the show on the road.
Ellie was at her boiling point. We had to do a urine analyze; blood drawn, EKG, and then we were ready to insert the sedation. Once the sedation was in it was smooth sailing from there. Ellie was a trooper today. They treated us very good today and the best part of it is the drug company paid for the whole process including the MRI which was mandatory anyhow. That was pretty exciting. So on the way home I don’t think we went faster than 5 miles per an hour half way home. Needless to say it was a long day. We finally walked in the door around 4pm. We will not know the results for at least a day or two. I’m not sure if it was the lack of sleep (I only slept one hour last night), the stress of the test today, or the nerves about the results of the tests but I no longer seem to have any finger nails. I could not stop biting my nails today; maybe it’s a mixture of all of them.
All and all no complaints my baby girl got to celebrate her 7th birthday and have a great time. Well a little complaint, Ellie has been having a complete melt down over eating for two hours now, but nothing we can’t handle. Please pray tonight that Ellie’s MRI comes back that the chemo is working. If it isn’t working I’m not sure if we have any other option. I will write as soon as I get word from the MRI.
P.S. I forgot to tell you we have one more day tomorrow at the hospital for testing. It hopefully will be an easy day her port is already accessed.
A mother with a battle ahead of her.