Here we go again...
First off I wanted to thank you for giving us our space this past week as we had tons to think about.
I cannot tell you how many times in the past week I have sat down to write this update and have stopped and shut the computer. I am finally going to muscle through this and complete this update once and for all and get it off my plate, my plate is over flowing and I could use a Jumbo size plate at this point to keep everything from spilling over.
First off its hard to explain the emotions that have gone through my head over and over since we got the news that Ellie’s tumor has grown on Dec. 28. I know I have told people the chances of it growing again where very high. But saying it and actually believing it are two different stories. In my heart I was thinking ok we are getting through at least high school with no chemotherapy and no brain tumor growth. So when we heard it had grown my heart sank and that dream flew out the window.
Last Wednesday we met with Ellie’s Doctors Teams and they gave us some options. Options that no parent should ever have to make I knew it could not be good news when we where in the exam room and we had a visit from both the Nurse Practitioners, Art therapist, the Nuero surgeon, and the Neuro Oncologist all at the same time. And to make things more obvious that the news was no good Dr. Goldman had the most serious face I have ever seen on him. The room was crowded as my Husband, Mom, & Step-dad all joined me for this meeting. Ellie said this must be really serious If everyone is here. Dave has probably taken off 5 days total off work since Ellie was diagnosed 7 ½ years ago. That includes all three of her brain surgeries. He is doing his best to support our family by working while I manage the medical aspect.
I really didn’t know what was about to be told to us. Then they informed us that Ellie’s tumor has grown 40% and they cannot tell how many months it has been growing. We do know its less then 6 months but could be as little as one month. I cannot even begin to describe how I felt in the moment. It felt like someone took the breath completely out of my body. The doctors gave us two options and we had to make the decision as her parents.
Ellie’s team explained our options.
Option 1: Ellie goes back onto the Chemotherapy Study she did in the past AZD6244. This would be chemotherapy everyday for two years’ strait. This is not the very last chemotherapy she was on but the previous one. We know that it kept her tumor stable but did not help shrink it and as soon as she went off the Chemo again her tumor grew. So after the two years the likelihood of having to have surgery would be extremely high.
Option 2: My most feared option
Ellie would have brain surgery the sooner the better. They would remove what they can as they can never remove the whole tumor due to it being located on her brain stem. Then after she healed she would then have to go onto the AZD6244 Study. Now the kicker of this choice is that there are only 3 slots nationwide of this study and there is no guarantee those slots will be available to Ellie when she is ready.
We sat with the doctors for Hours and discussed pros and cons of each option. You can tell both the Neuro Surgeon and the Neuro Oncologist where leaning towards surgery now. But with that comes much time off school and brain surgery is no walk in the park so the decision is not cut and dry. We went back and fourth for hours which one is the right decision. As Dr. Goldman said “Years ago a doctor would just tell you what you would be doing but now days it is more pressure on the parents to make the decision” He wasn’t kidding as the question was posed from someone in the room “You have to think of if there where complications in surgery and you chose to do surgery, and on the flipside how would you feel if it grew and became a bigger issue and her life was on the line” So as you can see there was no good option if you ask me. Her life is on the line any way we decided.
We finally left and had dinner and discussed it as a family with Ellie. Ellie, said I want to do it and get it over with. I’m tired of these headaches and not feeling good. That was the deciding factor. I never dreamt we would be at this stage where Ellie helps make the decision on her health.
So with that being said Ellie is scheduled for Brain Surgery Tuesday, Jan 22nd to remove a portion of her brain tumor. But not to make things more complicated we go in for a MRI of her Spine on Thursday and if her Cancer spread to her Spine we will have to go back to the drawing board how we will fight this battle. For now, we are thinking positive thoughts that it did not spread and are planning on Surgery Tuesday. It has been an emotional long draining couple of weeks. I truly appreciate all the love and support and again apologize if I do not respond to your messages as I am just trying to get through my day to day life at the moment.
I am asking that you get updates from this blog and not from us in person. As being asked all day long just stirs of feelings and makes us want to keep to ourselves. And if you know me keeping to myself is not an option. I am an open book but this tumor does not define our family. We have another child in several sports. Ellie loves act, draw, and sing. We are still focusing/praying that she makes to the next step for AGT. She is so much more than the girl with a brain tumor and I ask that we focus on that aspect. I promise to do my best to update this blog as much as possible.
Thank you again for the love and support as we embark on a very rough and bumpy road ahead of us.