What a great weekend so far. The event at “This Must Be The Place” in Lemont was awesome. I know allot of people are curious how much we raised for the Ellie Fun. We still don’t have the final numbers. I am going to have a letter posted hopefully at the end of the day today about the event.
One of Dave’s Best Friends drove from New York to be here and that was an awesome distraction. Ellie laughed so hard all day Saturday playing with Uncle Jerry. We were so busy having a normal day, it felt so good. When I gave Ellie a bath yesterday, her hair started to fall out in clumps. I know the first question every has is she on chemo? No not yet but from what I understand (not an expert opinion, just research), It sometimes happens after surgery depending on the surgery.
As far as Ellie’s Tumor, we are having a hard time finding any research on the tumor due to it being so rare. So I am putting this out to my followers, if you know of anyone that might be able to answer some questions for us on a PXA (Pleomorphic xanthoastrocytoma). Really really important that you do not post information directly to me just give me your name and email if you have information. I am not the one doing research due to it being too depressing. My Step father is doing all the information for me and dishing it out as needed. So I can get you in contact with him. Thank you so much for supporting our family in this time of need.
I truly want to thank everyone for coming out on Friday night; it was nice seeing new & old friends. Also to see what an amazing community we live in. I will have an official thank you letter later tonight with more information but for now. Thank you to Terri O’Neil, This Must Be the Place, and The two bands “Fort Awesome” & Field Day, All the Volunteers, My Friends, My Family, & The Community. Special thanks to Jerry for driving in and making our weekend almost a m I know there are so many more people to thank but it would take a 100 page letter.
We are going to church this morning and then Ellie has her first play date with some girls from school. We are trying to smooth the transition of being with friends before she goes back for a few hours a day on Monday.
Till later God Bless and Thank you
A mother with a battle ahead of her.