trying to focus on the positive..
So today was a long day. We had an MRI, Chemo, and Medication transfusion. We started our day at 4:30am (yes I said 4:30am) and we got home at 5pm. Like I said, long but productive day. I must say Ellie had her very best spirited day today. We had very difficult news about the Brain Tumor scans today. The doctors found that the tumor has once again grown by 1mm which might not seem like a lot, but it is when it’s growing in your child’s brain. We didn’t get to see our regular doctor because he was on vacation. The doctor we saw did say we would probably just have us keep on the Chemotherapy regimen for the time being. They will once again discus Ellie’s case in the tumor board and make a decision on our course of action. So we wait and watch. Which I think is the hardest thing to do as a parent. But I don’t want to dwell on the negative of the day.
Let me talk about how great spirited Ellie was today. I have never seen her so happy at the hospital. I’m sure it was because her Aunt and baby girl cousin came along.
The Day hospital was completely booked today so we were actually moved to the stem cell transplant unit. Which might I add it’s not a bad deal. The nurses call it the Ritz Carleton of the hospital. We got a private room, a comfy chair, our own TV, and games in our room. I was pretty awesome. I told our normal nurse Mary; don’t expect us back to that Super 8 (day hospital)
anytime soon. Lol.. Mary made sure to tell the nurse taking care of us, make sure we didn’t enjoy it too much. She wanted us back next time. We had a great time joking around today and just enjoying the happy moments with Ellie. She was singing, laughing, telling jokes, and even got out of bed at one moment to dance during Chemotherapy today. I wasn’t sure what had
gotten into her, but I liked it. It was nice because it made me forget about the bad news.
On the way home I had a cute interaction with Ellie. I was driving and she was telling me that she wanted a special song on a CD to play. She was getting impatient while I was struggling to find the song. I said to her “Ellie, can you just wait a minute?” She then responded “What’s a minute mom?” I then explained that its 60 seconds so if you count to 60 that’s a minute. Well then she proceeded to begin to count. I couldn’t believe she was calling me on my one minute. I started to struggle as the 5 disc player kept playing the wrong song. Now it became a challenge to get it done before my minute was up. I was so excited when I
Now as for tonight, she had a little melt down. But is too be expected when you had such a good day and you were pumped with poison all day, who could blame her. The only problem is we had to take her earrings out today and we have been struggling to put them back in but Daddy is on the job, I am sure he will make it happen.
Oh yeah and the other big news. Ellie is once again a star. She made the front page of the local newspaper, under the headline “Top 5 stories of the year.” They updated the story but used the original picture which is a great reminder of how far she
I am going to do a special end of the year blog post on Sunday or Monday so please check back.
I also wanted to let everyone know about the Cocktail Party fundraiser for Ellie in April. You can now purchase your tickets online. If you are purchasing your tickets please make sure to tell them you heard about the even from Ellie’s Family. I want to prove to the foundation that they chose the right family. To purchase tickets go to www.Oneforthekids.org We are looking forward to the event for it should be a great time. The tickets include unlimited liquor, appetizers, and entertainment. I hope to be surrounded by Ellie supporters.
A special Thanks to Mrs. Claus and Elves for making our Christmas so special this year. It was so nice traveling to and from the hospital without stopping to fill my flat tires or worrying about breaking down. The best gift ever, Thank You.
A special thanks to mrs.