I didn’t update on Sunday, I just couldn’t. Ellie’s Doctor contacted me on Sunday about the next step with her possible treatment plan. We are not telling anyone including Ellie until it is official. We don’t want to send her on a Roller coaster ride of emotions until the treatment plan is officially nailed down. Anyhow I couldn’t get myself to go to my Friends for the super bowl we just needed time to process. We just went to my Mom’s and lounged around. Ellie was happy to play cards with her cousins for a bit. They always seem to cheer her up. She gets worn-out pretty quickly though.
Yesterday was a good day. My parents had a painter paint Ellie’s room from pink to a more grownup Gray she wanted. She has been begging to repaint her room for almost a year now. Dave kept putting it off but there is no better time then the present. So everything from Ellie’s room has invaded our family room and kitchen. We keep joking that we are eating in Ellie’s room and we are watching TV in Ellie’s room. Hopefully we will be getting our family room and kitchen back by the weekend as we move everything back in. Ellie is super happy with her room color. My son Jake had his wrestling meet yesterday and I decided I should be there as he is feeling really neglected lately because I am so busy with Ellie and all her medical issues. It was an awesome meet, Jake pinned the kid in the first round. I was so proud and so happy I could be there cheering him on. It was so nice that everyone welcomed me and just had normal conversations with me. It was not easy to get out and about in public again but I really appreciated how incredibly nice everyone was to just have normal conversations with me. I was exhausted last night and didn’t blog because I went to sleep early.
Today was a big day for Ellie. She had an hour of tutoring for school and an hour of social work. She is so tired just after two hours. I hope she gets her energy back soon but I know the reality is by the time she gets her energy back we will be starting treatment and her energy will be depleted.
I know my family has told me they have had people ask questions about the tumor and treatment plan. I figured I will try to answer a few of those questions the best way I can at this time. Ellie’s tumor was not fully removed although a big amount of tumor was removed Ellie still has what some people would consider a pretty substantial tumor left. If you look at where it started I would say its very small. They cannot remove the access as it is attached to the brain stem and would cause serious damage. We do know there will be some kind of treatment and we have a preliminary treatment plan in place but we have to wait for some of the testing to come back before we move forward. So with that being said we are not ready to share the information yet. It could take up to 20 days to get the results back from the genetic testing and pathology report. We also have sent her tumor out to get a second opinion. Also Ellie has a long way to go on healing before we start hitting her with treatment.
I wanted to say thanks to some wonderful people that did fundraisers this week for Ellie. I really appreciate all the love and support.
• Thank You to Shannon Phelan for setting up the super bowl squares, and to everyone that bought one.
•Thank You to Broadway after School for donating the proceeds of the 50/50 raffle at all there plays this past weekend to us.
•Thank You to The Core Body Combat Class at the core for coming together and supporting our family. Also thank you for showing my sister so much support she really enjoys this group. My sister considers my kids like they are hers so this is a real struggle for her also.
• Thank You to April Rita for setting up the #EllieStrong bracelet movement. I can’t wait to see the town in green. I know that they will be going on sale on Friday in different places or people in town. You can get the information on Facebook at Lemont Mom. Please take your photo with your bracelets and tag #EllieStrong
• Thank You to Wendy Pawlak for setting up a food train. Having one less thing to worry about on a daily basis is awesome. (Also thank you for everyone that volunteered to bring us dinner)
• Thank You as always to Terri O’Neal who I don’t believe ever sleeps. Terri O’Neal, Hope and Friendship have arranged a few fundraisers for Ellie so far and she is always in my corner since day one. I did not know her until Ellie was diagnosed when she was six and someone put her in contact with me. What is now a friend was a complete stranger doing huge things to help our family. She has been such a great support through this all. I cannot thank her enough.
• Thank You to Lisa with Lil’ Me Photography. She is donating her time and taking photos as a fundraiser for Ellie. Please see the other page under “Upcoming fundraisers” for more details. Not sure if they have any sessions left but she is donating 100% back to Ellie. And it is a super cute backdrop.
I can go on forever because the amount of people that have stepped up to donate, cook dinner, give a card, or just show love and support is endless. What an amazing feeling it is to have so many people in our corner cheering Ellie on as she fights.
Thank You So Much.
We have a big day with the Eye Surgeon tomorrow and we could use some prayers that Ellie doesn’t have to have her eye taped 24-7 (BTW we gave her a break today during tutoring she was happy to have it off even for the short time)