We had a good first day at home. I was thinking of the first time Ellie came home from her first brain surgeries in January, we had the largest snow storm and school was cancelled and now this time we have the coldest day ever and again school is cancelled. I think this might be a pattern
So Ellie is really not loving having her eye taped shut. Today she said several times how she hates her life. She also told me tonight “when I was diagnosed with a brain tumor why didn’t you put me into foster care, because I am too much work for you” This broke my heart. I never want her to think she is a burden or to much work for me. Yes, it is a struggle with my MS but I have an amazing support team and I wouldn’t ever think twice about taking care of her. I love her so much. As a matter of fact, my Mom, Sister, & Sisters kids where here for a few hours today helping and playing with Ellie. I’m so grateful they all live within a mile or 2 of me. Tomorrow Ellie has OT Therapy in New Lenox out patient and then we head down to the eye doctor at Lurie Children’s Downtown. I am hoping they tell me they see improvement on Ellie’s eye but I am not hopeful as It looks really red still.
We as a family are doing our best to setup fun things for Ellie to look forward to in the future and as she goes through these draining treatments. My mom and step-dad hired a painter to come paint Ellie’s room on Monday. Ellie is super excited about that. We also have a lunch date at Ellie’s favorite cook on the grill place, Chi-Tung in February during ½ day of school with her cousins. And then our Vacation in March that has been on the books for a while. Ellie’s treatment will have to be worked around this. We might have to start a little sooner still waiting to hear from the doctors what the plans are. We are waiting for more pathology and genetic testing to come back also.
I am not sure how to thank every single one of you for all the love and support. I will keep on trying to do it on her but please forgive me if I miss anyone as its been a great overwhelming feeling of love and support. Terri O’Neal for the awesome food and Banana bread. It was nice to be able to just heat up dinner tonight, Thank You. Also thank you for setting up fundraisers to help our family. We did open a few more things today. Some things have been condensed so its hard to know what is from who but we truly appreciate it all. Before we left hospital yesterday Ellie got a really nice card from her Geography class and then when we got home there was an enormous basket of goodies for Ellie from Lemont High School. Ellie actually used a bath bomb tonight during her bath from the basket. Also Ellie’s English Class put together some hearts with kind words from the students, a blanket, a heart pillow, & some other goodies. We also opened our gift from my Aunt Sue and Uncle Bob it was awesome heart décor for Ellie’s Room. Ellie’s Vocal instructor gave Ellie several gifts including this little music box that Ellie keeps playing all day long. She loves it. Also her Theater group gave her a bin full of goodies. Thank you everyone I truly appreciate it and I am sorry if I am missing anyone. I also wanted to thank each and every person who donated to help us with our medical bills so far. I just don’t thing words can express how much it means to us.
I also wanted to mention, Terri O’Neal with “Hope and Friendship” has two fundraisers she has setup for Ellie and our family to help with medical costs.
The first is anyone can donate through Hope and Friendship a 501c3 you just need to put in the note section Ellie’s name or Team Compassion, or anything to link or identify it to Ellie’s cancer battle. She did mention that some companies do a matching donation.
The second fundraiser is a Mini Photo Session with a professional photographer. She is charging $50 per a session and donating 100% back to our family. I am attaching the flyer below.
My sister also setup a Go Fund Me Page to help with the medical costs that don't seem like they will be ending anytime soon..
Click here for the Go Fund Me Page
A mother with a battle ahead of her.