Lesson #1

When I was just a little girl,
My mother taught me much;
How to love, how to care,
How to reach out and touch.

The thing she wanted me to know,
Runs deeply in my soul,
Was that no matter where I was,
Touching others should be my goal.

Touching others in many ways,
By being the one they could trust,
To help them face their troubled times,
And to sacrifice if I must.

Sacrifice my own time, my resources
And my treasures,
By helping others I would find
A much greater kind of pleasure.

[peph]

Country Love

They strolled down the lane together,
The sky was covered with stars.
They reached the gate in silence
And he lifted, for her, the bars.
She neither smiled nor thanked him,
For she knew not how.
He was a young country lad
And she was a jersey cow.

[peph]

Penny for Your Thoughts #2

"I do remember talking to her about having something that no one can see and it is frustrating when people don't understand. Neither of us can be cured but we make the most of life. I remember meeting her over at Traci and Rob's after the fire and she was there helping to pick up the pieces that were still good.

-David Koch"

Penny for Your Thoughts #1

"The first time I brought John home with me, I took him to get your mom and we went to check out the new McDonald's in town. Well, it was Christmas time. Your mom asked if she could where her antler/santa hat. I said, no problem. As we waited in line at McDonald's Penny starts up a conversation with a guy in line. Once we get our food we sit down and she invites over the guy she met in line to sit with us. Well, come to find out, this guy was my step-Grandma's brother. We had great conversation. Then she asked him if she wanted to feel her hat cause she is horny....get it! The hat is a horny antler hat.

Well, after this incident we then meet up with my step-grandma Marlene at the House of Beauty. Marlene was under the dryer getting her hair processed so she couldn't hear well. For some reason Marlene asked if I liked hot sex. She meant Hot Sex the drink but Penny thought it was hilarious and could not stop talking about it all day. By this time my fiance, John, was rolling with laughter too. He was getting a sense of how weird my family was. After that we went to the printing shop to pick up our wedding invites. Where I had to scold Penny because she went behind the counter to say hello to everyone and she wasn't supposed to go there.

John and I remember this story fondly and it always makes us laugh and smile. Your mom is so special to me, she is a gift given to us to see the bright side of each situation and to not take things so seriously.

Hope this makes you laugh too Stacy!

~Trish Chee"

Gleevec

Wrote on April 4th:

My mom recently started taking a high dosage of Gleevec. We're not sure if it's the medicine it's self, the combination of it and her other meds or just everything overall but she's been more confused than ever. Yesterday she thought she had just moved into the apartment she's in now and couldn't figure out anything the rest of the day such as why she was there or anything. She's been living in that apartment since '07. At the moment she's not sure but she's thinking about stopping taking it. Her doctors told her - when she first got the meds - that she can try them and if she doesn't like them or has bad side effects, then she can just stop taking them.

Since then dad took mom off of the Gleevec and things have somewhat gotten better. She's not as confused as that anymore, but she is still having memory issues. When I stopped by to see her a few weekends ago, she kept asking me what was going on. I had to explain about the surgery all over again. She thought it had been done on the left side of her head because she could feel the bumps there. That was the side she had the shunt put into. I explained about it and that the surgery for the chordoma was on the right side. It was hard seeing her get so upset over it. Although I think most of her being upset was over the fact that she couldn't remember what happened, when it happened and everything dealing with it. Every time I visit her, she tells me how sorry she is for being so emotional and always asking questions about what's going on and why she can't remember anything. I always tell her it's okay but really it's hard to tell her the story over and over again. It was hard going through it with her when it first happened. I know it's not going to get easier and I've accepted that. I just wish it was a little easier to hold my emotions in while talking to her so I didn't upset her more.

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.

Surgery

Mom had surgery on January 16th to remove the tumor. I will post more here later once I get the time/energy to make a detailed post about everything such as when it happened, what's going on and everything.

You Give Me Hope

Between the Trees - You Give Me Hope

Stay Strong

I try to think of the best and that mom will be with us for a long time yet, but there are times where everything gets to me and I worry about the day that that will no longer be true. Currently I'm watching Say Yes to the Dress. There are girls on here who are shopping for a dress without their mom there because a disease took that away from them. Watching this show sometimes really gets to me because I wonder about it for me. Will my mom still be here and get to help me pick out a dress for my big day? Will my mom be able to watch me walk down the aisle and get married? Or will I be doing it all and only be able to hope that I was doing and choosing things my mom would approve of and be proud of? I hate thinking like that but there are times where I can't not think about it. Trying to stay strong and think positive.

Driving

When I was younger - I'm not sure how old - my mom took Amy and I to do something. Honestly, at this point, I don't actually remember where we were going or why we were going there, but I do remember what happened on the way there. We didn't make it far from home before mom ended up driving onto the left side of the road. I wasn't sure what was happening since I was in the backseat. Then I think she turned on her left blinker, drove off into the ditch as if it was a left turn lane at a stop light. She turned and suddenly we were driving into a corn field making a left turn. Amy and I screamed at her to stop and were crying and just trying to make it all end. Neither of us had any idea what was going on or why it was happening, but it was and we just wanted rewind time and just go back home. Eventually she stopped and from there on I don't really remember much. On the other side of the road was a drop of into the woods, so needless to say, I was scared thinking about what would have happened if we had turned the other way.

Once I was old enough to start driving, I was excited. I mean, who isn't? You get freedom and can do what you want, when you want to. I didn't stay excited for long, though. Dad would take me driving and at random times I'd suddenly feel like I was about to burst into tears. I was never comfortable behind the wheel. Whether it was from remembering that night or just because I was scared of something else, I just couldn't do it. I didn't get my license for years. I was pushed by family members and friends to get it. They'd always tell me that 'it's not that bad' and 'how do you survive without it'. There were so many things that they'd say. Some would even make fun of me. I was never able to really tell people why I was scared of taking that step and driving. Eventually I did get my license and now I was comfortable with driving. It doesn't seem like a big deal anymore and it's because I took my time and did it when I was ready - not when everyone was trying to force me to.