What an exhausting emotional couple of days we have had at the Cuiching household. I’m so frustrated with life right now. I received a phone call last night but just couldn’t get myself to write. Ellie is scheduled to have surgery on Wednesday to implant a port in her chest to her heart. This is how she will be getting her Chemo therapy. She then will begin Chemo within a week of surgery.
I am in overload. I am just trying to understand why so much has been put on my family. We cannot change the cards that we have been dealt. I would like to make a statement to all our family. I need everyone to take care of themselves. I cannot handle anything else happening to a family member right now. Just, physically and mentally take care of yourself. I also need when you are talking to me not to cry. Please be strong because I am trying my damndest to be strong and it does not help when a family member calls and cries on the phone. Everyone please stay strong for Ellie and my sake.
Now onto what information I left out the other day. Ellie’s tumor was putting so much pressure on her skull and brain that some of the Skull has disintegrated. So Ellie’s head is slightly fragile with some soft spots. Needless to say they believe the skull will grow back.
If you have yet to figure it out the doctors have decided the best route for Ellie is to do Chemo for a year in hopes that it will shrink and then they can remove as much as possible. Our ultimate hope is that when the Chemo shrinks the remainder of the tumor separates from the critical parts of the brain so that they can get it all. They decided not to do radiation at this point because it would have long lasting harm on Ellie. The hard part is that the Doctors have warned us over and over again that weather they get it all. We need to be prepared that it can grow back in two years, ten years, etc. This is a life long journey for our family.
Needless to say I have spent most of the past two days crying and trying to figure out how this has happened to my precious Ellie. Ellie is still clueless to what she is about to endure. We will be having the hospital Child life specialist explain it to her in a friendly way.
I have spent most of my day today trying to figure out how we could have caught it earlier. I have gone through the past year trying to look at everything and anything. I just think about “what about that time when she was tired and fell asleep at the tournament” was that the tumor. Etc.
I just can’t write about this anymore tonight. I have spent most of my day in contact with Doctors and Nurses discussing everything. I am going to now take a break from reality for the rest of the night.
A mother with a battle ahead of her.