Sunday, November 13, 2011
Sunday, November 6, 2011
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.
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.
Friday, May 27, 2011
Ray & Jan
They met one night in October
Was it a Halloween trick?
Or had he really met a princess?
He was going to find out quick!
November came along,
And there was much to be thankful for.
She was just what he had dreamed of...
He couldn't ask for more.
In December she said "I do"
And became his beautiful wife
It was more than he had imagined.
It was the beginning of a beautiful life.
They went on to raise six children
With support from their family and friends.
Their love for each other continued to grow.
It seemed to have no end.
Now it's forty years later
And each one still depends on the other.
For laughter, for comfort, for kindness.
They are constant support to each other.
So here's to you Mom and Dad
For all that you have been,
Partner, Parents, Lovers
But most of all, Friends.
[peph]
I know I've read this poem before - a long time ago - but I've always loved it. I stumbled upon it once again and had to post it. It really is one of my favorites that my mom has written. Of course it was from a long time ago and they'd been together for longer than forty years. Grandpa Ray passed away April 24, 2010. One thing that all of us in the family remember spending hours just staring out the windows watching all the beautiful birds out on many bird feeders in the yard. He's the reason I'm in love with Goldfinch birds now.
Was it a Halloween trick?
Or had he really met a princess?
He was going to find out quick!
November came along,
And there was much to be thankful for.
She was just what he had dreamed of...
He couldn't ask for more.
In December she said "I do"
And became his beautiful wife
It was more than he had imagined.
It was the beginning of a beautiful life.
They went on to raise six children
With support from their family and friends.
Their love for each other continued to grow.
It seemed to have no end.
Now it's forty years later
And each one still depends on the other.
For laughter, for comfort, for kindness.
They are constant support to each other.
So here's to you Mom and Dad
For all that you have been,
Partner, Parents, Lovers
But most of all, Friends.
[peph]
I know I've read this poem before - a long time ago - but I've always loved it. I stumbled upon it once again and had to post it. It really is one of my favorites that my mom has written. Of course it was from a long time ago and they'd been together for longer than forty years. Grandpa Ray passed away April 24, 2010. One thing that all of us in the family remember spending hours just staring out the windows watching all the beautiful birds out on many bird feeders in the yard. He's the reason I'm in love with Goldfinch birds now.
Thursday, May 5, 2011
Old Notes
I asked my mom for some of poems so that I could look through them and post a few on here. The last time she handed me a big folder filled with many papers. In between all the poems I found a piece of paper with this:
"The Proton excellerator produces ozone which causes a smell of blech. (Great - I finally get a little time away from home and the kids and I have to smell laundry the whole time!)Most of the other patients that I talked to are receiving 30 treatments. Since the tumor I have is so hard to kill, I will receive 44. I have passed the half way mark! 23 down, 21 to go. Last treatment is scheduled for April 20th."
And:
"Mayo Clinics radiation program offered me a 50/50 chance of controlling my tumor for about 5 years, the risk of side effects (blindness, loss of cognitive thinking) was considerable. Chance of permanent recovery 0%.
Loma Linda's Proton radiation offered me a 70-80% chance of permanent control - no more surgery - and a 5-10% chance of side effects (blindness, deafness, loss of cognitive thinking). These odds are definitely in my favor."
"The Proton excellerator produces ozone which causes a smell of blech. (Great - I finally get a little time away from home and the kids and I have to smell laundry the whole time!)Most of the other patients that I talked to are receiving 30 treatments. Since the tumor I have is so hard to kill, I will receive 44. I have passed the half way mark! 23 down, 21 to go. Last treatment is scheduled for April 20th."
And:
"Mayo Clinics radiation program offered me a 50/50 chance of controlling my tumor for about 5 years, the risk of side effects (blindness, loss of cognitive thinking) was considerable. Chance of permanent recovery 0%.
Loma Linda's Proton radiation offered me a 70-80% chance of permanent control - no more surgery - and a 5-10% chance of side effects (blindness, deafness, loss of cognitive thinking). These odds are definitely in my favor."
Sunday, April 17, 2011
Four Year Old Me
When you are four years old and home alone with your mom, the last thing you do is worry. All you think about doing is playing, eating, and just messing around. Sometimes cleaning if that's what is in store for the day - tons of fun, right? One night when I was four, I was home with my mom and I don't actually remember what we were doing at the time, but when I looked back at her, she was having a Grand Mal seizure [loss of consciousness and violent muscle contractions]. I honestly had no idea what to do, but I did make her lay down on the bed and I just hope with all my heart that my dad would be home soon. I guess I can say I was pretty lucky because it was only a few seconds later that my dad pulled into the drive way and took over so I could go into the other room and try not to think about what had happened. With me being four it was pretty easy to put it behind me within a few days, but over the years it has come back into my mind and made me realize how scary it was and how lucky I was that I wasn't alone for that long with her because I don't know what I would have or could have done. Needless to say, that is one of my first memories because it was the most terrifying thing I went though at that age - or any age, really.
Thursday, April 14, 2011
One Very Long Week
On Sunday, Penny noticed that her bad eye was red and swollen. She went to her normal doctor and he said to come back the next day. She did as she was told and eventually he told her that he had no idea what was going on and that he was going to send her to a specialist in the Twin Cities. On Wednesday, I went with her for medial/memory issues and just to be there with her through this. Dr. Gupta (an amazing woman who was a real sweetheart) told us she had a corneal ulcer and prescribed her pills, ointment, and eye drops. The two type of eye drops work together to help treat this and they have to be taken every hour. They can't be at the same time so it ended up that she'd have to put in eye drops every half hour, alternating which ones she was putting in. We took her home and she tried to do it herself for a day, and she was allowed to sleep most the night and only have to get up once to put them in. However, she called me the next morning and told me she wasn't comfortable with that and wanted to be admitted into the Phillips Eye Institute, where she was seeing her doctor, so that they could take care of her and then she'd worry a little less about it.
So now she's up in the Twin Cities at the Phillips Eye Institute. After a long two days I just hope that everything works out okay and that she is able to come home on Saturday or Sunday, depending on if she's comfortable enough with that. I guess only time will tell and we will just have to hope for the best.
So now she's up in the Twin Cities at the Phillips Eye Institute. After a long two days I just hope that everything works out okay and that she is able to come home on Saturday or Sunday, depending on if she's comfortable enough with that. I guess only time will tell and we will just have to hope for the best.
Saturday, April 9, 2011
If Only They Knew
They look at us, they point as us
They talk behind out back.
It's not that they are being rude,
They just don't know how to react.
How do you face someone who's been ill?
Who face each day what we must?
They count their blessings and
thank God it's not them,
then quickly walk away.
If only they knew what the hardest
part of being ill really was.
It's not the doctors, the drugs or the tests.
It's the nervousness it can cause
And in people we don't even know.
That makes them uncomfortable around us.
They feel uncertain, and just want to go
Go home and thank God it's not them,
and that they are as healthy as they are.
They don't realize that they are suffereing also,
in ways that can be stronger by far.
Stronger than what we face,
and in ways that are much more unsure.
It's a fact that we've had to accept.
If they'd only relax and accept us
for the people we are at heart,
they'd find that that's the best medicine
and we've needed it from the start.
-Penny [PEPH]
They talk behind out back.
It's not that they are being rude,
They just don't know how to react.
How do you face someone who's been ill?
Who face each day what we must?
They count their blessings and
thank God it's not them,
then quickly walk away.
If only they knew what the hardest
part of being ill really was.
It's not the doctors, the drugs or the tests.
It's the nervousness it can cause
And in people we don't even know.
That makes them uncomfortable around us.
They feel uncertain, and just want to go
Go home and thank God it's not them,
and that they are as healthy as they are.
They don't realize that they are suffereing also,
in ways that can be stronger by far.
Stronger than what we face,
and in ways that are much more unsure.
It's a fact that we've had to accept.
If they'd only relax and accept us
for the people we are at heart,
they'd find that that's the best medicine
and we've needed it from the start.
-Penny [PEPH]
Sunday, April 3, 2011
Blanket Fundraising
One day I was sitting around watching TV (or playing video games, I'm really not sure...) and I looked down at the blanket on my lap and a great idea popped into my head. It wasn't just a blanket that was on my lap, it was a no sew blanket that my best friend (and her mom) had made for me when we were younger. It was then that I decided that it would be a cool idea to make some of these blankets and sell them for money for the foundation.
I started looking up the no sew blankets online just to see what other people were doing with them (looks wise) and it was then that I stumbled upon a new type of no sew blanket that I had never actually seen before.
Instead of two pieces of fleece, it is only one piece with a yarn fringe. I personally really like them because they are different from the no sew blankets that a lot of people already have. As of right now I don't have anywhere set up online to buy the blankets, but within the next month I should. When I do I will definitely put a link up here to it so people can look at the blankets we have currently made. We being my best friend, her mom, and I.
Pictures above are of blankets we have made (some are still available, some are not). If interested right now, you can contact me and I will see what I can do for you.
I started looking up the no sew blankets online just to see what other people were doing with them (looks wise) and it was then that I stumbled upon a new type of no sew blanket that I had never actually seen before.
Pictures above are of blankets we have made (some are still available, some are not). If interested right now, you can contact me and I will see what I can do for you.
Friday, March 25, 2011
Chordoma Conference Trip
THURSDAY
Right after work [3rd shift in a plastic factory], I went over to my mom's house to help her finish packing and to head down to Madison, WI. We rode halfway there with my aunt Sandy and my grandma, then we met up with my mom's friend, Chris, who took us the rest of the way down to the Madison area where we spent the night. And I finally got to watch the last of the Harry Potter movies with Chris' daughter, Jessica.
FRIDAY
We headed out to the airport around 3:45 in the morning and arrived there around six. We took off at around 8:30 that morning on AirTran from Milwakee to DC. And I was so excited because I was going to get the window seat, which I did but there was a problem. I had the only window seat without a window. That's right, I got the sucky seat in the middle of the plane that didn't have a window. The plane ride was around an hour and a half long. We also got to ride the metro and honestly, I liked it. It was very convenient because the metro stopped right across the road from the Marriot North Bethesda hotel where we were staying and where the conference was taking place.
Welcome & Kick off Remarks
Three important words were defined in this session: survivor, survivorship, and advocacy. A survivor is anyone with a diagnosis of cancer and for the remainder of life where as survivorship is living with, through and beyond cancer. Advocacy is the act of pleading for, supporting, or recommending.
Care for Caregivers - Walking on Eggshells
This session only I went to. Mom went to the Patient Roundtables and Chris went to Chordoma 101, so I don't know what happened or was said in either of those, but I can sum up with I learned in Care for Caregivers. The main thing is to remember that you are not alone. It may feel like it at times, but there are others out there dealing with the same situations, even if there's only a few or if there is a lot. Also, just take the time to breathe! Just take a few minutes and breathe. Realize that it doesn't have to always be go, go, go. There's always a few seconds to breathe. And occasionally you have to be selfish - take care of yourself. Go out with your friends, watch a movie, just relax and take care of yourself. All is pretty simple advice, but like Amy Sales said, it's things we forget to do when in a situation like this. Amy Sales wrote the book Walking on Eggshells: A Caregiver's Guide to Practical, Real Life Direction on What to Say and Do When a Loved One Has a Life-Limiting Illness.
SATURDAY
Community Action Panel
People got up and talked about different fundraisers that they had done prior to this conference. There were many neat ideas that definitely got my mind going. I have a few ideas right now that I hope to some day make a reality. But at this session they asked me to stand up and talk about the blankets I've been making to raise the money to be able to go to this conference and for the foundation.
The Survivors Panel
A few long time survivors of Chordoma sat in front of us and talked about everything is for them. The main thing they had to say was: hope. Hope was what got them to where they are today. During this session I could tell something was wrong with mom and a few seconds later she turned to me and asked where we were. Chris and I took her out into the hall to calm her down a bit. It took a few minutes, but then she did remember where we were but she didn't remember going from sitting in that room to where we had taken her.
Ask the Experts
*Is Chordoma cancer?
A tumor is an abnormal growth and cancer can spread or reoccur. Chordoma has been described as a malignant tumor.
*What is life expectancy?
It's gross averages. It's a combo separated by space and time. It's relatively hard to get an average because it depends on how long the study goes on.
*Any clinical difference in radiation types?
Not really sure. Carbon Ion Radiation can cause damage to the normal tissue. Proton Radiation isn't as damaging to the normal tissue. Over the years a lot of Proton Radiation places have been showing up - if going to one, make sure they know what they are doing and that they have dealt with your type before.
*Surgery vs Radiation.
Sometimes surgery and radiation are better together.
Surgery can't always remove all of the tumor, but sometimes radiation does more damage.
*Are there any drugs out there that cure Chordoma?
Simply put, no. There are no drugs found to cure Chordoma and there is no reasonable reduction show to happen from taking drugs. Some may have slight effects for a short period of time, though, such as Glivic.
*How often for Check ups?
After surgery, it takes about 3 months before they can tell if something is still there or if it is just scar tissue. After that, 6 months if nothing looks out of the ordinary. After that, though, at least once a year to make sure. Not sure why some (aggressive) types reoccur after 3 months and some don't show back up for ten years.
*Why do drugs stop working?
Drugs might stop one part but not the others. It might attack the the big cells but not the little cells in the tumor.
*Calcify?
If it seems to have calcified before any treatment, it's not really calcified. It's more likely that the tumor growing is pushing against the bone and making it look that way. If it is after treatment, then it's because that's the body's natural way to heal.
Video Interview
That afternoon I had a video interview where they asked me questions about how this has affected my life and family. Along with other various questions.
SUNDAY
The morning meetings/sessions that we had kind of recapped the previous days. Also we talked about future fundraiser ideas such as: a cook book, bake sales, blankets, and a personal e-mail asking people to donate 1-5 dollars and send the message onto their contacts - copied and pasted, not forwarded.
That afternoon Mom, Chris and I went to visit places in Washington D.C. since we were only about twenty miles from there. We saw the Washington Monument, White House, WWII Memorial, Korean War Memorial, Lincoln Memorial, and the Vietnam Memorial. After that we took a pedicab back to the WWII Memorial before going to the National Mall. There was a cop by the metro so we couldn't get on at the stop we planned but ended up walking by the Castle of the Smithsonian. After that we took the metro [that we could get on] to Union State to eat before heading back to the hotel for the night.
MONDAY
We went back to Washington D.C. because we had stayed an extra day in Maryland so that we could spend a day sightseeing, even though we did a lot of that Sunday afternoon. But on Monday we did go to the Smithsonian Museum of Natural History and the Smithsonian Museum of American History. We headed back to the hotel after spending almost all day at those places.
We ended up meeting up with my cousin Travis who lives out there and who I don't get to see all that much. The Cheesecake Factory is where we went with him and let me tell you, if there was one near me, I'd be broke. It was sooo good.
TUESDAY
We flew back to Wisconsin, where it was cold! Maryland had much better temperatures. We ended up staying over night down in the Madison area because of bad roads and then on Wednesday my dad took off of work and met halfway so I could be back home in time for work on Thursday night.
Through a lot of the trip we had to remind mom of small things like when we had gotten to Bethesda, when we were heading home, what day it was and what time it was.
If my notes are confusing, I'm sorry. I'm currently doing this off of little sleep and I have been trying to fix mistakes as I catch them, but sometimes they slip by. Also there are more things we hear, did and said. As of right now, though, this is most of what I remember/have access to.
Right after work [3rd shift in a plastic factory], I went over to my mom's house to help her finish packing and to head down to Madison, WI. We rode halfway there with my aunt Sandy and my grandma, then we met up with my mom's friend, Chris, who took us the rest of the way down to the Madison area where we spent the night. And I finally got to watch the last of the Harry Potter movies with Chris' daughter, Jessica.
FRIDAY
We headed out to the airport around 3:45 in the morning and arrived there around six. We took off at around 8:30 that morning on AirTran from Milwakee to DC. And I was so excited because I was going to get the window seat, which I did but there was a problem. I had the only window seat without a window. That's right, I got the sucky seat in the middle of the plane that didn't have a window. The plane ride was around an hour and a half long. We also got to ride the metro and honestly, I liked it. It was very convenient because the metro stopped right across the road from the Marriot North Bethesda hotel where we were staying and where the conference was taking place.
Welcome & Kick off Remarks
Three important words were defined in this session: survivor, survivorship, and advocacy. A survivor is anyone with a diagnosis of cancer and for the remainder of life where as survivorship is living with, through and beyond cancer. Advocacy is the act of pleading for, supporting, or recommending.
Care for Caregivers - Walking on Eggshells
This session only I went to. Mom went to the Patient Roundtables and Chris went to Chordoma 101, so I don't know what happened or was said in either of those, but I can sum up with I learned in Care for Caregivers. The main thing is to remember that you are not alone. It may feel like it at times, but there are others out there dealing with the same situations, even if there's only a few or if there is a lot. Also, just take the time to breathe! Just take a few minutes and breathe. Realize that it doesn't have to always be go, go, go. There's always a few seconds to breathe. And occasionally you have to be selfish - take care of yourself. Go out with your friends, watch a movie, just relax and take care of yourself. All is pretty simple advice, but like Amy Sales said, it's things we forget to do when in a situation like this. Amy Sales wrote the book Walking on Eggshells: A Caregiver's Guide to Practical, Real Life Direction on What to Say and Do When a Loved One Has a Life-Limiting Illness.
SATURDAY
Community Action Panel
People got up and talked about different fundraisers that they had done prior to this conference. There were many neat ideas that definitely got my mind going. I have a few ideas right now that I hope to some day make a reality. But at this session they asked me to stand up and talk about the blankets I've been making to raise the money to be able to go to this conference and for the foundation.
The Survivors Panel
A few long time survivors of Chordoma sat in front of us and talked about everything is for them. The main thing they had to say was: hope. Hope was what got them to where they are today. During this session I could tell something was wrong with mom and a few seconds later she turned to me and asked where we were. Chris and I took her out into the hall to calm her down a bit. It took a few minutes, but then she did remember where we were but she didn't remember going from sitting in that room to where we had taken her.
Ask the Experts
*Is Chordoma cancer?
A tumor is an abnormal growth and cancer can spread or reoccur. Chordoma has been described as a malignant tumor.
*What is life expectancy?
It's gross averages. It's a combo separated by space and time. It's relatively hard to get an average because it depends on how long the study goes on.
*Any clinical difference in radiation types?
Not really sure. Carbon Ion Radiation can cause damage to the normal tissue. Proton Radiation isn't as damaging to the normal tissue. Over the years a lot of Proton Radiation places have been showing up - if going to one, make sure they know what they are doing and that they have dealt with your type before.
*Surgery vs Radiation.
Sometimes surgery and radiation are better together.
Surgery can't always remove all of the tumor, but sometimes radiation does more damage.
*Are there any drugs out there that cure Chordoma?
Simply put, no. There are no drugs found to cure Chordoma and there is no reasonable reduction show to happen from taking drugs. Some may have slight effects for a short period of time, though, such as Glivic.
*How often for Check ups?
After surgery, it takes about 3 months before they can tell if something is still there or if it is just scar tissue. After that, 6 months if nothing looks out of the ordinary. After that, though, at least once a year to make sure. Not sure why some (aggressive) types reoccur after 3 months and some don't show back up for ten years.
*Why do drugs stop working?
Drugs might stop one part but not the others. It might attack the the big cells but not the little cells in the tumor.
*Calcify?
If it seems to have calcified before any treatment, it's not really calcified. It's more likely that the tumor growing is pushing against the bone and making it look that way. If it is after treatment, then it's because that's the body's natural way to heal.
Video Interview
That afternoon I had a video interview where they asked me questions about how this has affected my life and family. Along with other various questions.
SUNDAY
The morning meetings/sessions that we had kind of recapped the previous days. Also we talked about future fundraiser ideas such as: a cook book, bake sales, blankets, and a personal e-mail asking people to donate 1-5 dollars and send the message onto their contacts - copied and pasted, not forwarded.
That afternoon Mom, Chris and I went to visit places in Washington D.C. since we were only about twenty miles from there. We saw the Washington Monument, White House, WWII Memorial, Korean War Memorial, Lincoln Memorial, and the Vietnam Memorial. After that we took a pedicab back to the WWII Memorial before going to the National Mall. There was a cop by the metro so we couldn't get on at the stop we planned but ended up walking by the Castle of the Smithsonian. After that we took the metro [that we could get on] to Union State to eat before heading back to the hotel for the night.
MONDAY
We went back to Washington D.C. because we had stayed an extra day in Maryland so that we could spend a day sightseeing, even though we did a lot of that Sunday afternoon. But on Monday we did go to the Smithsonian Museum of Natural History and the Smithsonian Museum of American History. We headed back to the hotel after spending almost all day at those places.
We ended up meeting up with my cousin Travis who lives out there and who I don't get to see all that much. The Cheesecake Factory is where we went with him and let me tell you, if there was one near me, I'd be broke. It was sooo good.
TUESDAY
We flew back to Wisconsin, where it was cold! Maryland had much better temperatures. We ended up staying over night down in the Madison area because of bad roads and then on Wednesday my dad took off of work and met halfway so I could be back home in time for work on Thursday night.
Through a lot of the trip we had to remind mom of small things like when we had gotten to Bethesda, when we were heading home, what day it was and what time it was.
If my notes are confusing, I'm sorry. I'm currently doing this off of little sleep and I have been trying to fix mistakes as I catch them, but sometimes they slip by. Also there are more things we hear, did and said. As of right now, though, this is most of what I remember/have access to.
Thursday, March 17, 2011
On the Way
Today my mom, her friend Chris, and I are heading out to go to Bethesda, Maryland for the third international Chordoma Community Conference from March 18th to March 20th. Short update due to finalizing packing and heading out early. Will post all about the conference shortly after getting back next week.
Monday, March 14, 2011
Chordoma Cancer
When I was only six months old, my mom was diagnosed with Chordoma Cancer, a relentless bone cancer in her brain. In 1994 my family went out to California so my mom could get proton radiation at the Loma Linda University. We were out there for about ten weeks and I don't remember much about it, but we were only about an hour away from Disneyland. Of course, because of that, my sister - who was seven at the time - didn't complain too much about being out there because we were on vacation and we got to go to Disneyland many times throughout the ten weeks.
Fast facts:
Location: Occurs in the skull base and spine.
Incidence: 1 per million per year: about 300 new cases per year in the US.
Average age at diagnosis: 49 for skull base, 69 for spine
Average survival: 7 years
Gender distribution: Affects men more frequently than women.
Treatment options: Primarily surgery and radiation.
Source: http://www.chordomafoundation.org/
My mom, who was diagnosed at the age of twenty-nine, is still alive and kicking twenty-one years later. Sure the years have been tough and things have not always gone as planned, but my mom always has a way to see the brighter side of things and make everyone laugh. There isn't a day that goes by where she can be totally serious. Many think it is because she lives life to the fullest and enjoys everything that she is able to still be here with us.
Fast facts:
Source: http://www.chordomafoundation.org/
My mom, who was diagnosed at the age of twenty-nine, is still alive and kicking twenty-one years later. Sure the years have been tough and things have not always gone as planned, but my mom always has a way to see the brighter side of things and make everyone laugh. There isn't a day that goes by where she can be totally serious. Many think it is because she lives life to the fullest and enjoys everything that she is able to still be here with us.
Subscribe to:
Posts (Atom)