Please make sure to read this whole post as Important information about her hospital stay is below.
First off we received word that Ellie’s tumor has not spread to her spine and surgery is scheduled for Tuesday Morning. I feel extremely relieved and thrilled but now onto the next step and stress, the surgery. I had a great day today with friends who let me vent and talk about what is going on. The reality of Ellie’s surgery has really hit home today. In 4 days the doctors will be cutting into my babies (ok not so baby anymore) brain. They will do there best to remove as much of the tumor as possible. There are many possibilities and factors and no guarantees. The only thing we know for sure is that they will not be able to remove the whole tumor. There is a possibility of them opening her up looking at the tumor and closing her back up as they don’t know what they are looking at until she is opened up. It’s a Pleomorphic Xanthoastrocytoma (PXA) which means It can transform into a different tumor but they don’t know what they will be looking at until they open her up. Last time they went in there where major veins running through the tumor and it limited how much they could remove. So at this point we wait and pray that it is a successful surgery and that they can remove a huge portion of the tumor with no side affects.
This weekend we are spending the weekend as a family as much as possible before Tuesday. I made a promise to Ellie last year that I would put her in Snow Board School this winter. Well no time like the present since this will be her last chance to go snow boarding this season. We are going to take her this weekend for a day trip, its going to be a cold one but she is excited. Ellie’s headaches have gotten worse over the past week so I am praying that it does not keep her from having a great time.
I wanted to once again say how impressed I am with the amazing love and support we have received from our family, friends and the Community of Lemont. Jake came home to tell me that the whole school made cards for Ellie that just warms my heart there are are so many people in Lemont supporting and cheering for Ellie. Thank you so much.
Ellie’s hospital Stay: I am going to try an answer the most asked questions I have gotten over the past week.Do they have to shave Ellie’s head? No, her bald doctor made a joke that even though he doesn’t look like it he is great with hair. They will part her hair and then open her up. How long will Ellie be at Lurie Children’s Hospital? The estimate is 4 days but it could be longer depending on her recovery.Can her friends visit her? Lurie Children’s has a new policy which if you ask me sucks. No one under 18 can visit her so we will be doing as much facetime as we can to keep her spirits up. Also only 3 visitors will be aloud at a time so its very limited. Much different then the first go around. Once we are home we will control the visits to a minimum to keep from spreading of infection and sickness to Ellie. What do we need at this point? I really can’t tell you my head is spinning and I am living one day at a time right now I am so focused on the surgery and getting Ellie through that I can’t even tell you what we need. The one thing I ask is that you spread the word of this webpage LoveforeEllie.com as it is the easiest way for us to keep everyone up to date and lifts our spirits when we see how many people are visiting Ellie’s site and cheering for her. She had 3,000 website visits this week alone.For now, my next update might be Monday before surgery if not I will update before, during, and after surgery on Tuesday. For now, we are enjoying our last few days of fun before we are stuck inside for a while.
A mother with a battle ahead of her.