I am going to speak of two things today
- Ellie’s MRI, also included a picture at the bottom of them prepping Ellie for her MRI.
- And some information on the Fundraiser/Party this weekend
First of all just wanted to let everyone know its not too late to come to the One for the Kids Benefit for Ellie this weekend. I will have more later on this. They interviewed Ellie and I the video is posted on www.Oneforthekids.org.
So today was a emotional struggle starting this morning when Ellie was hiding in a closet crying “I don’t want to go to the hospital, Im scared” After trying to talk her down I finally had to just pick her up and carry her to the car. My other option was to join her in the closet. I heard everything from “you hate me that’s why you make me go” to “I’m stupid”. It was rough to say the least. On the way to Childrens not only was she having a melt down but I also had a melt down. I feel so bad for my mom she had to deal with both of us today. It was rough.
Ellie finally calmed down once we reached Children’s (Clark out patient for MRI) although she was still very angry and upset at me and the situation she was able to lay still for the hour MRI. I was so proud of her because we didn’t have to sedate her like in the past. We then headed over to Children”s Hospital. I struggle with the wait to find out the results. I was extremely anxious about the situation.
We found out while waiting for the doctor that Ellie’s counts were once again low. This means many things for her future treatments. First of all they are very careful not to start another set of Chemotherapy without her counts being up. If her counts go down to low they will never be able to come up and she will spend the remainder of her life doing transfusions weekly to keep her alive. One of her counts (forgot which one) is suppose to be 1200 and it was 0. Yep that’s right 0. Crazy. Well they are once again dropping her medication to a lower dosage in hopes that this will work but if not they are going to have to stop this Chemotherapy and consider other options. Other thing we found out was that while Ellie is on treatment we have to be careful of certain activites, basically no roller coasters for Ellie until she has completed her treatment. Anyhow this was the bad news, now onto the great news, no FANTASTIC.
The MRI today showed for the very first time, no growth. Yep although the Chemotherapy is killing Ellie’s body, it is working. The doctor said he is cautiously optimistic. He also let it slip that he was downplaying the severity of Ellie’s condition every other time. So this made him very pleased to see no growth but because he downplayed the bad news that he has given in the past, it was only to fair to downplay this good news too. He cracks me up. Anyhow, after a day of meltdowns and tears we finished on a huge positive note. We are thrilled and totally ready to celebrate Saturday this fantastic news. We know this is just a small step in getting Ellie to survive this but it’s the first small step forward we have had. THE VERY FIRST ONE IN OVER A YEAR. we are crazy happy right now. We will take the good news and run with it and worry about the blood counts next week.
Now onto the Cocktail Party, I have had many questions about it so I am going to try to answer your questions here. Well to the best of my ability.
Many people have asked me about seating. From what I understand they have tables and cocktail tables set up. No assigned seating. From what I have been told not many people sit during the event, they are too busy socializing and having a good time.
Second question that everyone keeps asking. What is the dress for the event. You can go to Oneforthekids.org and see the photo album from last year. From what I have been told some women dress in cocktail dresses while others wear dress pants with dress shirts. It looks like men can wear a suit with or without a tie or a dress shirt with a tie. Pretty much check the website and wear whatever you want ;).. Obviously use your best judgement .
For now I leave you with how very excited we are to celebrate Ellie this weekend. Come ready for a great party and you don’t want to miss it. Also everyone pray, pray, pray Ellie’s counts come up by next week so we are able to continue on this chemotherapy that is working. I’m exhausted and going to bed now. Thank you everyone for your love and support.
A mother with a battle ahead of her.