The New Year

On January 1st, Penny was taken into the hospital because she was complaining of headaches. It had been a while since the first one appeared, but on the 1st she went into the doctor to see what was going on. I was asked to come pick her up to take her home after a CT scan was done. I wasn't able to so my dad headed up so he'd be there when she was done. However, the found something they didn't like and she was transported down to Rochester via ambulance. There was pressure on her brain from the fluids that were unable to drain. The reason they couldn't was because the tumor had grown back and wasn't letting the fluid drain like it's supposed to. This is the sixth reoccurring Chordoma tumor she's had since she was diagnosed with it back in mid 1990.

The first three in 1991, 1992, and 1993 they did surgery through her nose. Then in 1994 they decided to try proton radiation at the Loma Linda University in California. It wasn't until 2003 (I think, I'm not exactly sure at the moment and everyone else is sleeping so I can't verify this) when it came back again and the option that was chosen at that time was Gamma Knife radiation. Now, in 2012, we were faced with another decision.

In order to drain the fluids on her brain, they did surgery for a shunt. Everything seemed to be getting better and a lot of the stress went away for a little while. She was still in the hospital and we still had to figure out what all was going on with the tumor but for the time being we all just took a deep breath and tried to keep mom happy.

On January 13th I made a group on facebook to keep all of mom's family and friends up to date with everything that was going on. It was so much easier knowing we could get ahold of everyone at the same time instead of trying to remember what we told to who and if we forgot anyone. There was so much going on that I wouldn't be surprised if we had forgotten someone if we didn't create the group.

We (my dad, aunt Sandy, aunt Sally and I - with Chris Henning [my mom's best friend] on the phone) had a meeting with Dr. Vangompel and mom about a possible surgery that could be done to remove some of the surgery. All of us have had conversations with mom over the last few years where she said she didn't want to do surgery ever again because she'd been through three and it was too much for her. However, the doctor gave us statistics, facts, and a run down of what would happen in surgery. All of us went into wanting to say no. He thought it was a clear cut decision to say yes and we all thought it was a clear cut decision to say no. We listened to him for a while because having a family meeting to talk about what we should do. We talked and listened to what mom was thinking. She told us it's one more chance and she wasn't ready to die. After getting very emotional, we calmed her down a bit and went out into the hall where we talked about it a little more. Everyone except me was set on yes after that. I still had my doubts because I felt like everyone was pressuring her when we were in the room together. So I went back into the room to talk to mom, just us. She felt like she was being selfish because we all said no at first and I told her many times that this is just about her - it's what she wants. We talked through all the details and she [SHE!] decided she wanted to go ahead with it. It was then that my mind was changed and I agreed with it all. No one else swayed her mind or mine. She was scared of what would happen, but she wanted to give it a shot.

We encouraged family to call or stop in and talk to her for a couple of reasons. First of all we wanted her to know that we were all there for her no matter what, that she wasn't alone in any of this. And also because we wanted them to be able to see her just in case something did happen during the surgery since there was a chance that she wouldn't make it out. She did feel a little overwhelmed by it all but she was more than happy to see everyone. It really did help her.

January 16th, the big day. Dad, Amy and I went down to Rochester right away in the morning to see mom before she went into surgery. They told us they planned on 6/7am to start. We showed up at 5:30 that morning to make sure we got to tell her we love her and so that she could tell me happy birthday. [Okay, that part was just me being slightly selfish.] At 7:00am they took her down to get her prepped for surgery. Amy, dad and I ended up in the waiting room on the ICU floor she'd be on after the surgery was done. Surgery started at 9:57am and we got updates every two hours about how it was going. At 8:40pm the doctors called us to tell us that she'd be headed up to recovery soon. You couldn't imagine how happy we were that she made it out. It was far from over, of course. Dr. Vangompel came up to tell us what he knew. He told us that they removed approximately 70% of the tumor and that they would have to keep an eye on her the next few days to watch for bleeding, swelling, and other issues that could happen.

Once she was in her room and all set up, we got to go in and see her. She was still groggy and complaining of the pain, but that was expected. Dad and Amy stayed with her the whole time but I had to leave after a short period of time. It got to be too much for me. Hearing her talk about how much it hurt and seeing her like that... I just couldn't handle it. I started crying and went back to the waiting room to calm down while they gave her pain medication. After a while Amy came back to get me. I went back in to see her again and it was hard but she was going in and out of sleep and the medicine was working. It wasn't until around 11:30pm that we finally headed home.

On January 17th, Amy called mom's nurse. The nurse said that mom was still in pain but she was sitting in a chair. Amy said she sounded wore out but she was talking. January 18th mom was no longer an ICU patient. That day she got moved back up to her old room where we went to see it. It was an amazing day. Dad told me that on the 17th she was still in pain and not very happy, but when we saw her on the 18th she was smiling, joking and having a great time. It was definitely a lot more like her.

January 20th she was moved to the Durand hospital. She's there now doing speech therapy, physical therapy, etc. and she's closer to home so it's easier for family and friends to visit her. Cards, stuffed animals, pictures and flowers have been sent from various people to cheer her up and wish her well. One set of flowers which was from where I work - from people who she's never met before that were thinking of her.

Some updates from friends and family on the facebook group page:

Nadine is a great woman, who also has Chrodoma, that we met in Maryland at the Chordoma Conference.

Some of Amy's friends.

My aunt, Penny's sister, Sandy.

Thanks to everyone who is thinking about her. It really does mean a lot to all of us. Any questions, thoughts, etc that you have, you can get ahold of me on facebook, here or e-mail me at stacyhalling@yahoo.com

Also, if I have forgotten to add something, I'm sorry. There's been so much going on that I do forget to mention/share some things and it's not on purpose. It's just hard to keep track of what I have told to who and so on.