Ellie's Update finally...
Today has been a very difficult day for me. I may look ok on the outside but I’m breaking on the inside. So I know most of you have been waiting for an update on Ellie. Well a few weeks we received some news. On that day I blogged but did
not post it to the public till now. So I am going to include that blog into this blog, then I will add for today at the end.
So I am blogging but am unable to post this blog till the end of September. Last week we were informed out of the blue that Ellie might need to have surgery. I was so taken back by this news. I knew that this would come up someday I just thought I had allot more time to prepare for this. No child should have to go through one brain surgery, let alone two. It is unthinkable and imaginable that a child should have to have three. Today we had a meeting with the nuero oncologist to discus Ellie and were she stands at this moment.
We viewed the Scans from before her first surgery, and then this last scan. Although I have seen the scans a multitude of times it still is shocking to me what the size was of the tumor before surgery. It is very shocking to see the new scans also for it still looks pretty large. The tumor is now about the size of a small lime. Maybe even slightly bigger. Ellie has been unable to
have chemo now for four weeks in a row due to her counts being so low. Her body is rejecting the chemo therapy. So at this point nothing is battling this tumor. This past week I have been very reserved and shut down from people as I always fear the
worse. The doctors are very confident they can get another big chunk of the tumor. The tumor was intertwined with blood vessels and attached to the brain stem. They believe the Chemo has killed off some of the blood vessels that would cause her to bleed out in surgery. They are talking about doing angiogram to determine if they can cut off the blood vessels that lead to
the tumor so they can do surgery a little easier without bleeding out. The Surgent is going to work with the specialist and get there opinion on doing this procedure. We will not know if this is something she will have to endure until it's closer to the surgery.
We are not taking any of this lightly we have gotten three opinions and every single one has been shocked by the size of Ellie’s tumor. One of the doctors said it is a miracle she is walking and talking with the size of the tumor she has now. They have also all confirmed that we are in the right place (a very well respected doctor told us we have the number 1 oncologist for
a PXA in the world.) That gave me great faith in Ellie’s medical team. They also agreed that it is very important that Ellie has surgery. After surgery Ellie will get some time to recover from surgery and then continue on Chemo therapy treatment.
I think when I found this out a week ago I spent allot of time crying. The thoughts that kept on going on in my brain were “She just came back to me, she is back to my Ellie, sweet, kind, thoughtful and now we have to start all over” If you remember Ellie had to take a medication for months after her surgery and it gave her extreme mood swings and she became very mean. They say it happens to 30% of kids and of course Ellie was one of the 30%. But unfortunately to keep her alive we must move forward with another surgery and we will have a rough few months but as long as she comes out of this surgery walking and talking I will be happy. I am feeling very secure that this is the right thing and it’s going to happen. So the big news today is that on September 27th Ellie will undergo her third surgery. This surgery is top secret for we do not want Ellie to find out about it until a day before. I am struggling not being able to blog this and keeping this from people when they ask me how she is doing.
But this is for the best interest of Ellie. I know I am anxious, nervous, and stressed and this will go on for three
more weeks until her surgery. I could not imagine how she would feel if she found out. We are also asking that only family come the day of the surgery. It is a hard enough day for Dave and me not to add more stress about keeping it together for
For now we pray that our sweet kind Ellie comes out of her third surgery like a champ.
Family and Friends will be aloud after she is out of the ICU, but for now we are just keeping it to immediate family. Thanks for your understanding
What a great Labor Day weekend we had. We took a family bike ride to the park, and just tried to enjoy as much
family time as possible. Today was a little rough with Ellie. She was trying to do homework and then got extremely frustrated.
She then said some very hurtful and scary things. She said to me “Maybe I should just go to heaven because I’m
stupid.” Even the thought of her saying that scares me. I made an extra prayer to god tonight. Ugh hate these kinds of days. But just need to keep my head up and think of the positive.
22 more days to think about the surgery. I have been having Sleepless nights and tons to do before the surgery. I figure if I prepare like I won’t be home for a month then the surgery will go smoothly. I figure then I will only be gone for a week in the hospital. Last time Ellie had surgery I left my house with nothing, nothing prepared and I did not come back for three weeks.
I just hope this time it goes much more smoothly. Well it’s late again and can’t sleep but I guess I will try again.
It has been a long few weeks and now we are coming near to Ellie’s surgery. Tomorrow Ellie
has her MRI. Friday was probably the hardest thing watching Ellie say goodbye to her class.
We told Ellie on Friday that she was going into the hospital for as week and would not see her friends for a few weeks. I just didn’t want her to be upset with me that she didn’t get to say goodbye. So It took everything not to cry that day. We luckily got to get her head of hair that day so she was very excited.
So tonight I was folding laundry, packing for the hospital and I got a phone call that my Grandpa Bob had a mini stroke this morning. I really wish my grandparents would keep us in the loop to what is going on. I hate getting phone calls way
after the fact. They told us we are not aloud to visit them either. I remember when my grandma had surgery last month and she called my mom as she was going into surgery to tell her about it. Needless to say between my Grandpa’s mini stroke and Ellie’s surgery on Tuesday, I won’t be sleeping tonight.
Much Love and tons of prayers for Ellie and my Grandpa tonight. Thanks for being patient with me, this blog probably is all over the place because I am all over the place today.