Well today it started nice and early when we left our house this morning to head downtown to CMH (Children’s Memorial Hospital). We arrived a little early at 10am only to run into one of our favorite nurses (Wendy) walking into the hospital. We found out we would be meeting with the Oncologist and neurosurgeon immediately following her MRI.
We saw many real tears from my sweet girl today. The IV was difficult for her today. It was very scary watching them put her out for the MRI as it always is. But finally she fell asleep and all was calm, for an hour at least. When she was waking up from her Anastasia she was extremely cranky. We were warned that she will remain cranky and weak in the legs for the rest of the day and some of tomorrow. She cried for over an hour following waking up. We had to put her in a wheel chair to proceed to the fourth floor for our big appointment at 2:30pm. When we arrived for our appointment Ellie was crying so loud that we had to delay our appointment for 10 minutes while Dave took her out to calm her down.
Luckily we were able to get her a Happy Meal which made it a little better. We then got to meet with our Oncologist Dr. Goldman. What an awesome Doctor with a big personality and fantastic bedside manner. We just asked a few questions before long Dr. Dipatri (Neurosurgeon) came in to give us the update on Ellie’s tumor.
The moment I had been waiting for. I took a big breath to get ready for the big news. Dr. Dipattri showed us the scans. I was very surprised (in a bad way); Ellie’s tumor was the size of a Walnut. I believed it in my head it to be much smaller. The biggest problem with this PXA tumor is that some very critical blood vessels are intertwined with the tumor. What they would love to do is go back in and remove the complete tumor; unfortunately this is not an option with all the complications related to how it is intertwined with critical parts of her brain.
So this takes us to the next step. These are not finalized until the brain tumor board meets tomorrow. I will be getting a call either tomorrow night or Friday sometime to inform me the official options/choices. But Dr. Dipattri and Dr. Goldman believed that it would be one of two options.
Option 1: Ellie goes back in next week for an outpatient surgery to implant a catheter to her heart. In which will remain under her skin so that she can be injected with Chemo therapy starting next week. The Chemo Therapy will last one year. At this point they hope that it will affect this tumor and shrink it. The hopes are that it will shrink it enough that it detaches from the critical part of the brain and then go back in for another brain surgery at this time to remove as much as they can at that point.
Option 2: Ellie goes back into Brain surgery next week to remove as much as 70-80% of the remaining tumor. Then after surgery she will then go do the Chemo therapy treatment route. In hopes that it will shrink again and detach from the critical parts of the brain. And then possibly go through another surgery to try to remove the remaining part of the tumor.
Well so for now like I said these options are not official. The official word will come tomorrow night or Friday morning but this is what Ellie’s doctor is leaning towards. Either way we are going to have a very sick little girl on our hands for a year.
Now heres the kicker….
After leaving the hospital around 6pm we get into our car after a long day. Our car starts having transmission problems. God really is testing me these days. I was like, REALLY? First our roof and now our only family car. So now I have to work on figuring out what to do with our car before next week. God give me the strength.
Dave and I are just praying that no matter what we do, that we make the right decisions for our daughters sake. Good news is that the doctor thinks that Ellie has a 70% survivial rate at this point. Unfortunatly they only have research since 1993 on a PXA, it is that new. And she is the youngest child they have seen with a PXA. PXA’s are normally in teens and Adults. So they do not know the long term survival rate and they can not gaurentee anything at this point. All we know, is that we have been blessed to be able to spend more time with our precious baby girl. No matter weather it is a year, 10 years, or 50 years we are planning on enjoy every moment we have with our Ellie.
So we are moving forward and hopefully in the right direction. I will be updating the finale disicion as soon as I find out. So keep checking back.
A mother with a battle ahead of her.