Don't count me out yet!

I do realize that I am in the care of Hospice now.  I am not asking for any kind of special treatment.  I know miracles happen and with God anything is possible.  I also know there are lots of people praying for a miracle and much more deserving of a miracle than I am.  Families enduring more awful experiences than I am.  I am trying not to have unrealistic expectations but as I have said before....I have just always lived on the sunny side of life.
My issue as of late is a bed sore.  Yuck!  I also have issues getting sick to my stomach.  With persistence, both of these issues are going away, but they sure do slow me down.  The bed sore is very sore and has kept me in bed, laying on my side most of the time.  Dad and I spend lots of time trying to figure out how to get rid of the stomach issues.  With the help of the nurses, we have tried to figure out why I toss cookies when I go somewhere in the car and the motion comes to a stop.  Depending on the day or time or time of day, you could stop by the house and see me looking really good or really not.  I just never really know.

I am getting used to the culture of Hospice.  Our local Hospice helped my mom in her last few weeks of life and we had a wonderful experience.  Once again they are being very helpful.  I am very happy with their care and they give my dad some relief and reassurance.  He is a very good caregiver.  One day, while discussing my care, a nurse asked my dad if I wanted to continue treating the bed sore or not. To be honest, I had wondered myself if this was the end.  But had decided that, after almost 9 years of fighting, I didn't want this bed sore to be the end of my battle. 

A few days ago we had an incident that made Trent very emotional.  He laid in the bed with me and just cried his little heart out.  As I lay there with my arms around him, all I could think of was how much he still needs me here.  Not having Brad is very hard on him and the thought of losing his me scares him very much.  He needs his mom and he needs me to continue sharing stories about his dad.  Lots of stories.

So I have increased my protien and caloric intake to help my body get stronger.  I have started using my walker to walk in the house to work my muscles.  I've gotten up and taken little rides in the car and tried to change positions more often in the bed.  Wednesday night I achieved my first goal.  I went to a Mass of healing at St. Leo church.  It was a great Mass and I felt so refreshed when we left!  I would like to thank all my family who attended and would like that I pray for all the people who are praying for their own healing. 

Trent sat beside me during Mass. Sometimes he would hold my hand and that reminded me why I am going to keep working.  Even if it is just for one more day!

Thanks to everyone for your support, your visits, food, help around the house,

Don't count me out yet....I still have some more memories to make!

The darn blood/brain barriar

So much has happened in the last couple of weeks.  I keep meaning to sit down with the computer but happily I have received lots of visitors and my kids are home for the summer.

It is hard to know exactly where to start.  I guess it all begins with some really bad headaches....really bad.  After an MRI, it was determined that the brain cancer was on the move again.  The headaches were so bad they would make me throw up.  Eventually I would passout and just collapse onto the floor.  There is this strange thing called the blood/brain barrier.  The best I can explain it is that cancer is altimately a blood disease and chemo treats the blood.  Chemotherapy drugs do not infiltrate to the brain.  So although my tumor count in the body was good, my brain was being invaded.  It was my understanding that once they fully radiate your brain (which we had done last year) there was nothing else the doctors could do.

My doctors asked if I wanted to try this new treatment.  There wasn't a great prognosis; three to six months.  But I decided to take the odds.  It was quite the whirl wind of surgery and doctors appointments, finding people to help with the kids and the house, but soon I realized that it just wasn't going to work.  I lost a lot of memory.  My poor dad.  We would leave somewhere in the car, then I would get sick to my stomach and pass out.  I think I woke up in every Emergency Room between here and Baltimore.  I think the confusion was the worst.  It was so bad I started actually asking my dad who he was.  My head was still hurting, I developed a huge blood clot in my leg and couldn't walk on it.

Two weeks ago it was time.  With tears in her eyes, my doctor told me that it was time for them to stop treating me.  We had gotten close and I had talked to her many times about the quality of life versus the quantity.  I can't live what is left of my life worrying about Trent and Ian coming to see me in the hospital. As it was I wasn't able to attend Trent's birthday party  and missed several baseball games.

When I got home I talked to the boys.  I have had to do some tough and painful things in my life, but that was probably the toughest.  Since then, it seems like the house has been filled with people. And, being a people person, I quite like that.  It is very frustrating not to be able to cook food or straighten up the house for guests, but I have enjoyed seeing people. 

I guess this should be a sad time, but really I am quite happy.  I went with my gut and took the boys to Disney and Lego Land in the spring.  That was a really good call!  We went ahead with basketball mighty mites in the spring for Ian and baseball for Trent.  And I am hoping against hope to make it to my last big goal....going with Ian to his first day of school.  I have said it before.  It really isn't dying I am afraid of, it is the leaving.

Post Surgery - June 2012

It was a beautiful day in Baltimore, MD.  Well, I have been out of surgery for a while.  My head is clear and I feel good.  Actually, the only thing that hurts is my throat where they had to put the tubing in and out!  I'm waiting on the go ahead to eat something and watching Everyone Loves Raymond!  Thanks to everyone for everything today.  All the prayers and support.  All the happy thoughts.  My great friend Mandy who was cleaning my house.  My kids who were so cooperative and were so sweet when I called them to tonight.  I had sent them a few pictures and they were just so cute when we talked.  Glen and Cindy took the boys and Casey all day and night and knowing that they are safe and happy is the best part of my day!  I don't have much else to do but relax and get good sleep tonight.

The hopes for tomorrow are to be able to eat and get a dose of chemo before I leave tomorrow!  Thanks for everything today everyone!  Have a good night.

Spring 2012 Update

This has been a great spring for us!  As you know from my blog, we had a great trip to Florida and our family made some terrific family memories.  In May we celebrated Trent's First Communion with so many of our family and friends.  I would like to thank everyone for their gifts for Trent and all the cards and well wishes.  To a Catholic child, a First Communication celebrates a special passage in a young child's life.  Trent seemed so growned up on his First Communication and it brought back so many special memories from the spring when I was in 2nd grade.  I am so very proud of Trent.  I need to thank Cindy for jumping right up and getting the celebration set.  We all had a great time!  Celebrating his 1st Communion is something I have have prayed about since Trent was born and I am feel so blessed that I was able to experience it with him!

We also celebrated Brittany's graduation from WVU Medical School.  I am so happy that I was able to go with Dad to celebrate with Brittany, Scott, and Brittany's family in Morgantown.  I am so proud of her and she has worked so hard to reach this huge goal.  She is so very smart and has proved it with all of her awards and accomplishments.  I am so thankful that they have found eachother and hope they have so many years of happiness!

In May we also got to celebrate Ian's Pre-Kindergarten graduation.  It seems unreal to me that in the fall, Ian will be a full-time Kindergarten student.  He has grown up so much and I know that there will be so many wonderful things to come in his future!!

The end of May is kind of up in the air.  I am getting some questions and to be honest I don't have a lot of answers right now.  I started getting upset to my stomach and having other cancer-related symptoms like headaches, dizziness, confusion, etc.  My doctors have changed my chemo and, at this point, it is a trial to see if we can get something to work to stop any progression.  So, right now I'm just asking for prayers for my family and I.  Because,as the changes are more prounounced, I have had to share some more about my medical condition with both boys.  My intent has never been to provide fear to my chidren but you know honest does sometimes give fear.  We have lots of help and sources, but this is the hardest part for me.  Please pray for us as we navigate the next stage of my journey and how our family will progress.

It is hard to believe that June is almost here!

Spring Break 2012

Several months ago during a date night the boys and I were talking about vacations. I decided to take a risk and ask them, "if you could go anywhere, where would it be?"  Without hesitation, Trent blurted out, "LegoLand."  Ian took a few minutes before deciding he wanted to see Mickey Mouse and his castle.   How lucky am I that the boys picked two destinations only a short ride away from each other in sunny Florida.

While the ideas rolled around in my head, I did enough research to realize there are lots of options when putting together a Disney vacation!  I didn't do nearly as much planning and research as I typically would and there just seemed to be so many choices.  So I found a local travel agent and he helped me put together a great vacation!  On April 9th Trent, Ian, Dad and I got on a plane and we flew back on April 13th.  It was such a great time and we made lots of memories.

We bought a park hopper ticket, stayed in a Disney Hotel, spent lots of time at the Magic Kingdom and MGM Studios, spent a day at LegoLand, visited the really cool dragon pool at the hotel, took a boat ride to Downtown Disney, and had lots of time for rides!  Trent and Ian enjoyed everything about the trip!  The airplanes, restaurants, hotel, Disney transportation, rides, shows, everything!  They are the perfect ages to enjoy the parks.

Ian was still smitten with the Disney Characters and he couldn't get enough of the rides.  Trent was super excited that so many people love Star Wars and he loved LegoLand.  It was a busy trip and we were all tired when we got home, but I wouldn't have changed it for anything!  We are back to our regular routines, but when school is out the boys and I will start our scrapbook!  We can talk and laugh and remember our great week of Spring Break 2012 in sunny Florida!

Thanks

I would like to thank all my friends and family who remembered today. Your cards, emails, text messages and calls really meant a lot to me.

The warm sunshine and chilly breeze today made me think of our last "family day" with Brad. Brad had borrowed a boat from a friend and brought it to the house. The boys were so excited to have a boat just parked in our driveway. Ian helped Brad wash it and both boys would look out the windows at it and ask over and over when we were taking it out. I think Ian told everyone he encountered that his dad was taking him out on a boat. (Even the clerk at the grocery store.) Originally we were going to take a trip to a local lake resort, but school had just started and we were really busy. So, we drove 15 minutes north and put in at a public access of the Potomac River in Maryland.

Brad was almost as excited as the boys to get that boat in the water. I remember our ride to the river. Brad was a little nervous driving his big truck with someone else's boat in tow. He would get frustrated with other drivers and the boys laughed and laughed at him! When we got to the public access ramp, Brad backed the truck and boat trailer down and we discovered that I would have to drive his gigantic truck up the ramp as the boat slid off. That was a great truck, one I could hardly get up into, and one I had never driven. That truck had a lot of power and we all laughed when I squealed tires up the ramp!

There were only a few other boats on the water and it was so peaceful. The boys tried tubing. They were both so excited and talked about it for a long time. Brad blew up the tube and Trent looked at Ian and said, "you go first." Brad and I laughed at Ian who did just what his older brother told him. It was so much fun just riding up and down the river with the wind in our faces! We were trolling along when a Bald Eagle swept down to the water and pulled out a fish not too far from our boat. We found him down river in a tree and watched as he ate his dinner. As avid Eagle-cam watchers, Brad and I thought that was so cool!

It was just such a fun family experience and I am so glad that we went. It is a great memory for the boys and I. I just remember lots of laughter, the wind in our faces and the peaceful water. It is a beautiful memory.

Today Brad would have turned 38. I didn't miss him any more or less today than I have every day since he passed away.

Happy Birthday Brad. We love you.

GREAT NEWS!!

There are a few reasons I haven't written for a while, but mainly because this Lent I decided to try to spend less time on the computer and more time with the kids. I am working hard to make our down time quality time! Although sometimes it seems like we don't have a lot of down time these days, I do what I can!

Last week we really made tracks with the end of wrestling season for Trent and the beginning of Mighty Mites Basketball for Ian, we met with the councelor again, I had my bone and CT scans, I began the process of refinancing the house, got the house appraised, closed Brad's Estate, attended a 'Mass of Explaination' for Trent's First Communion, went with Trent on a field trip, I had chemo (thanks to Neupogen) and I started another round of radiation, and got several things wrapped up at work!

It was a busy week, but we did it and everything seemed to fall into place! Once again, I have to thank everyone in my family who helped put all the pieces into place. I have a cold and have had a few days when I felt a little puny, but for the most part I am getting along pretty well. Sometimes in the afternoon I hit a 'wall' and realize I just can't go any further. So I take a break. The radiation on my arm is a breeze and it is treating a tumor that I have known was there for a long time, but it is important to get it treated before it fractures. Ten days of radiation and I'm done.

Today was a beautiful day! After wrestling in the morning the boys and dad got a few things done in the yard and we ran a few errands. The boys rode their bikes and scooters and I sat in the sun. It must be something about the Vitamin 'D' because it really made me feel better!

Here is the best part of my week...drum roll.......

I just sat down to read my email for the first time since Friday and there was a message from my doctor:

Subject: GREAT NEWS
Your SCAN LOOKS GREAT! YEA!

Enough Said.