Nick will be having his 90 day scans next Monday, Jan 5th. I've allowed myself to be mentally unstable for the week prior to scans so to warn those I love, I have put on my anxiety hat (I probably should have a sign on my car, too). No one else is worried even a smidgen, so I'll take it on for them; I'm the mom, after all, and it is my right. Lee reminded me of my favorite quote by Corrie ten Boom, "Worry does not empty tomorrow of its sorrow; it empties today of its strength." I know that, but... It's not really worry I feel, just a dull sense of unrest - the wanting to protect my child, but can't.
Some may wonder of the impact of keeping track of all the other children with rhabdo, but these aren't statistics suffering, it's our own babies, daughters, sons, grandchildren, nieces, nephews, neighborhood kids, teenagers, cousins. I think we try to stay united for support for we truly know what we are going through as mothers; more importantly to make a united front in getting this monster of cancer eradicated, if only one child at a time. I think it is equally important for me to offer words of comfort as well as words of celebration in declaring what worked for Nick.
I just received an email about President-Elect Obama and how we can get some attention. Please read:
Obama is again taking questions to the Transition Team. The questions are then voted on by the public. Below is the question that was submitted by the founder of PAC2 (People Against Childhood Cancer). Please vote for this question. Do not submit the question again.
Childhood cancer is the #1 killer disease of our kids: 46 are diagnosed & 7 die each day. Additional funding is needed for research into better treatment options. Will you include funding in your budget to prioritize research to save our kids?
To vote it to the top,
1 - go to: http://change.gov/page/content/openforquestions20081229/
2 – register (if you haven’t already)
3 - search for “childhood cancer 46”
Vote for the question submitted by AJs Dad. Choose the check mark, not the X.
Please vote for our question. Let's get it in the top spot. Tell everyone you know to vote for it.
YOU DONT HAVE TO COPY AND PASTE THE SAME QUESTION. Because of duplicate postings last time, we lost out being in the top ten! We can do it this time.
Thank you! Pass it on!
Nick is doing incredibly well; he passed ALL his classes - engineering, calculus and chemistry - simply fantastic! He had his wisdom teeth pulled a couple of weeks ago and is healing slowly. He is loving his job at Deer Valley and has seen a few celebrities. He is eating like a typical college kid and at this moment, entirely independent! I am incredibly proud of him.
Happy New Year and many blessings of health and happiness to our wonderful network of family and friends. Your power and reverence has been undeniable, thank you.
Love Lori
Monday, December 29, 2008
Saturday, December 27, 2008
Please pray for...
As our family celebrated the birth of Christ and our own miracle in Nick's continued remission, I received some very sad news. Our favorite rhabdo warrior pirate, Diego - age 5 - suddenly passed away on Christmas Eve http://www.caringbridge.org/visit/diegofuentes. He had been in the hospital with various ailments the past month and he was getting ready to go home; he was called home to be with his Heavenly Father, instead.
There is another 5-year old I've grown fond of, actually two - twins Caden & Coleman. These two are a pure delight to know through the wonderful writing of their mom www.carepages.com/carepages/ColemanScott. Coleman also had a serious setback on Christmas Eve.
I realize this is Nick's site, to post about his journey, but I can't help but feel that while we embrace his victory in this particular battle, we have a fierce responsibility to continue the valiant fight in the war against cancer. I ask, once again, for you all to pray for these two little boys and their families. We have had an enormous outcry from many rhabdo parents in wanting to make a difference. I have re-posted some important suggestions to anyone that is considering making contributions.
To the list:
It is extremely important to make sure that our fundraising really accomplishes something. Here is an incredible example:
A family on this list raised a considerable amount of money and donated it to CureSearch specifically for rhabdo research. Part of this money is going for the purchase of special (and expensive) packing tubes that will be included in the "rhabdo kit" that goes to every Children's Oncology Group hospital. The tubes specifically protect RNA in tissue samples as RNA deteriorates very quickly. These samples will then be available to researchers who are trying to understand more about the biology of rhabdo. RNA will tell them what genes are being turned on far in excess of normal cells. These genes then become the targets for new, more effective and less toxic treatments. A directed donation to CureSearch can help fund more of these sorts of widespread benefits for rhabdo research.
Here is another example:
Private funding has partly supported two recent international rhabdo conferences. One was held in Bristol England in November, the other will be held in Seattle in February. These meetings are intended to pool international research information and to gather together basic researchers who work on rhabdo biology and clinical researchers who design new treatments. These meetings are expensive to put on, but the benefits of getting numerous researchers together face-to-face can't be measured in dollars.
However, no matter how much money we raise privately, it will never be enough. We also need to raise awareness of the toll that childhood cancer takes on society. Here's a good and easy way to do so: http://www.curesearch.org/support_curesearch/raise_awareness/
I was very excited about the passage of the Conquer Childhood Cancer Act of 2008, but in this economy with so many competing demands, it will be important to make sure that Congress appropriates the $30 million intended for childhood cancer research that the Act permits. One way to make sure that it happens is to join the advocate network that pushed for this Act:
http://capwiz.com/curesearch/mlm/signup/
The more Rhabdo families advocating on this group, the better. Research might help kids in the future, but families struggling with rhabdo need help and support right now. I have two suggestions for donations to support organizations:
First, ACOR, which makes this list possible. It's easy to take this list for granted, but please don't! Even though the list managers are volunteers, it takes money to keep the hardware and software running for the lists to work properly. http://www.acor.org/donate/now/
Second, the Sarcoma Alliance www.sarcomaalliance.org. The Sarcoma Alliance is the only national organization whose mission is solely education, information, and support of people with sarcoma and their families and friends. Peer-to-Peer matches people with similar diagnoses for support; Hand in Hand is the assistance fund for seeking second opinions; the Discussion Board provides additional connections for people with sarcomas.
Remember it doesn't have to be dollars you donate; it can be your time. There are lots of opportunities to help. If anyone needs ideas, please let me know and I can suggest an endless supply.
Joan, mom to Ali, dx stage 3 alveolar 9/96 list co-owner, Rhabdo-Kids (also Patient Advocate with Children's Oncology Group, and board member of Sarcoma Alliance)
Thanks, everyone, for caring.
Love Lori
There is another 5-year old I've grown fond of, actually two - twins Caden & Coleman. These two are a pure delight to know through the wonderful writing of their mom www.carepages.com/carepages/ColemanScott. Coleman also had a serious setback on Christmas Eve.
I realize this is Nick's site, to post about his journey, but I can't help but feel that while we embrace his victory in this particular battle, we have a fierce responsibility to continue the valiant fight in the war against cancer. I ask, once again, for you all to pray for these two little boys and their families. We have had an enormous outcry from many rhabdo parents in wanting to make a difference. I have re-posted some important suggestions to anyone that is considering making contributions.
To the list:
It is extremely important to make sure that our fundraising really accomplishes something. Here is an incredible example:
A family on this list raised a considerable amount of money and donated it to CureSearch specifically for rhabdo research. Part of this money is going for the purchase of special (and expensive) packing tubes that will be included in the "rhabdo kit" that goes to every Children's Oncology Group hospital. The tubes specifically protect RNA in tissue samples as RNA deteriorates very quickly. These samples will then be available to researchers who are trying to understand more about the biology of rhabdo. RNA will tell them what genes are being turned on far in excess of normal cells. These genes then become the targets for new, more effective and less toxic treatments. A directed donation to CureSearch can help fund more of these sorts of widespread benefits for rhabdo research.
Here is another example:
Private funding has partly supported two recent international rhabdo conferences. One was held in Bristol England in November, the other will be held in Seattle in February. These meetings are intended to pool international research information and to gather together basic researchers who work on rhabdo biology and clinical researchers who design new treatments. These meetings are expensive to put on, but the benefits of getting numerous researchers together face-to-face can't be measured in dollars.
However, no matter how much money we raise privately, it will never be enough. We also need to raise awareness of the toll that childhood cancer takes on society. Here's a good and easy way to do so: http://www.curesearch.org/support_curesearch/raise_awareness/
I was very excited about the passage of the Conquer Childhood Cancer Act of 2008, but in this economy with so many competing demands, it will be important to make sure that Congress appropriates the $30 million intended for childhood cancer research that the Act permits. One way to make sure that it happens is to join the advocate network that pushed for this Act:
http://capwiz.com/curesearch/mlm/signup/
The more Rhabdo families advocating on this group, the better. Research might help kids in the future, but families struggling with rhabdo need help and support right now. I have two suggestions for donations to support organizations:
First, ACOR, which makes this list possible. It's easy to take this list for granted, but please don't! Even though the list managers are volunteers, it takes money to keep the hardware and software running for the lists to work properly. http://www.acor.org/donate/now/
Second, the Sarcoma Alliance www.sarcomaalliance.org. The Sarcoma Alliance is the only national organization whose mission is solely education, information, and support of people with sarcoma and their families and friends. Peer-to-Peer matches people with similar diagnoses for support; Hand in Hand is the assistance fund for seeking second opinions; the Discussion Board provides additional connections for people with sarcomas.
Remember it doesn't have to be dollars you donate; it can be your time. There are lots of opportunities to help. If anyone needs ideas, please let me know and I can suggest an endless supply.
Joan, mom to Ali, dx stage 3 alveolar 9/96 list co-owner, Rhabdo-Kids (also Patient Advocate with Children's Oncology Group, and board member of Sarcoma Alliance)
Thanks, everyone, for caring.
Love Lori
Monday, December 15, 2008
Christmas Story
As you know, I follow many other children online in their journey with cancer. I came across one from a sweet little 6-year old named Ellie; her mom writes a beautiful site with updates (www.caringbridge.org/visit/elliepotvin)
I don't know the specifics about the following story posted Dec 4th on Ellie's journal site (date, etc. - but I don't think it really matters) - you can visit her website to look at the photo. I got chills reading it and wanted to share it with all of you. Here you go...
This is a truly inspirational story. Blessings to all the parents I have met through this devastating journey called 'cancer'... your children who are in pain or suffering are in good hands. We must believe. Let's just pray together - God will hear us, his will will be done.-------------------------------------
So many of you have heard me tell the story, but I wanted to pass it along anyway to those who didn't hear it and for those who wanted it in email.
A couple of Wednesdays ago, I got an evening phone call from the pediatric ICU at Presbyterian Hospital, where I work as a child life specialist. Usually when they call at night, it means something bad has happened. This, however, was different. My coworker told me that the most amazing thing had just happened and she just had to call to tell me.
We had a patient who has really grown up in and out of the hospital. All the staff knows her and her family. She had been in the Pediatric Intensive Care Unit (PICU) for about a month, and had been intubated - on life support. She was not doing well. The doctors had approached mom about taking her off life support the Saturday before. Mom was okay with it, and said that she'd been through so much and if was her time to go she wanted to honor that. So they had taken her off.It was Wednesday and she was still alive. Amazing. The doctors approached mom about taking off her oxygen mask. Mom was supportive, and began praying over her daughter. The mother of another young patient who was in the bed next to her began praying with her.
The nurse practitioner went to the nurses station to chart that she had taken off the oxygen mask. While doing so, she looked up at the security monitor that videotapes the double doors leading into the PICU. It records anyone who may be waiting outside the doors to get in since it is a secure unit. She saw a man standing there, and it looked a little funny to her, so she decided to walk down the hall to open the double doors personally. When she opened them, no one was standing there. She walked back down to the nurses station to finish charting, assuming he had walked away, but saw him still standing there on the monitor.
So she opened the doors with a button near the nurses station and leaned over to see him walk in, but no one was standing there. She pulled over another nurse and both stood staring at this man on the monitor and opening the doors to find no one there. The nurse practitioner leaned in closely to look at the man on the monitor and said, 'Oh my gosh. That's an angel. You can see his wings!'
They said that the sun starting shining so brightly and the whole PICU was strangely filled with light. They said he was a tall man and you could see wings behind him.T hey pulled over all the staff of the PICU and the two praying mothers and everyone was staring at this man on the monitor and opening the doors to find no one there.
Crying, everyone pulled out their camera phones to take pictures, but no one could get it to show up on their camera. The mother of the girl pulled out her camera phone and finally got a picture of the angel who was guarding the doors to the PICU. He turned out as a man of light.
I have attached the picture from her phone.The girl was later discharged from the hospital to go home. A Miracle.
This story makes me so grateful for the way that God reveals himself to us, and the how Great He is really is. We have much to be thankful for this holiday. :)--
Katy L. Field, CCLSCertified Child Life SpecialistPresbyterian Blume Pediatric Hematology and Oncology ClinicCharlotte, NC
Merry Christmas
Love Lori
I don't know the specifics about the following story posted Dec 4th on Ellie's journal site (date, etc. - but I don't think it really matters) - you can visit her website to look at the photo. I got chills reading it and wanted to share it with all of you. Here you go...
This is a truly inspirational story. Blessings to all the parents I have met through this devastating journey called 'cancer'... your children who are in pain or suffering are in good hands. We must believe. Let's just pray together - God will hear us, his will will be done.-------------------------------------
So many of you have heard me tell the story, but I wanted to pass it along anyway to those who didn't hear it and for those who wanted it in email.
A couple of Wednesdays ago, I got an evening phone call from the pediatric ICU at Presbyterian Hospital, where I work as a child life specialist. Usually when they call at night, it means something bad has happened. This, however, was different. My coworker told me that the most amazing thing had just happened and she just had to call to tell me.
We had a patient who has really grown up in and out of the hospital. All the staff knows her and her family. She had been in the Pediatric Intensive Care Unit (PICU) for about a month, and had been intubated - on life support. She was not doing well. The doctors had approached mom about taking her off life support the Saturday before. Mom was okay with it, and said that she'd been through so much and if was her time to go she wanted to honor that. So they had taken her off.It was Wednesday and she was still alive. Amazing. The doctors approached mom about taking off her oxygen mask. Mom was supportive, and began praying over her daughter. The mother of another young patient who was in the bed next to her began praying with her.
The nurse practitioner went to the nurses station to chart that she had taken off the oxygen mask. While doing so, she looked up at the security monitor that videotapes the double doors leading into the PICU. It records anyone who may be waiting outside the doors to get in since it is a secure unit. She saw a man standing there, and it looked a little funny to her, so she decided to walk down the hall to open the double doors personally. When she opened them, no one was standing there. She walked back down to the nurses station to finish charting, assuming he had walked away, but saw him still standing there on the monitor.
So she opened the doors with a button near the nurses station and leaned over to see him walk in, but no one was standing there. She pulled over another nurse and both stood staring at this man on the monitor and opening the doors to find no one there. The nurse practitioner leaned in closely to look at the man on the monitor and said, 'Oh my gosh. That's an angel. You can see his wings!'
They said that the sun starting shining so brightly and the whole PICU was strangely filled with light. They said he was a tall man and you could see wings behind him.T hey pulled over all the staff of the PICU and the two praying mothers and everyone was staring at this man on the monitor and opening the doors to find no one there.
Crying, everyone pulled out their camera phones to take pictures, but no one could get it to show up on their camera. The mother of the girl pulled out her camera phone and finally got a picture of the angel who was guarding the doors to the PICU. He turned out as a man of light.
I have attached the picture from her phone.The girl was later discharged from the hospital to go home. A Miracle.
This story makes me so grateful for the way that God reveals himself to us, and the how Great He is really is. We have much to be thankful for this holiday. :)--
Katy L. Field, CCLSCertified Child Life SpecialistPresbyterian Blume Pediatric Hematology and Oncology ClinicCharlotte, NC
Merry Christmas
Love Lori
Thursday, December 11, 2008
Finals Week
This past week I have seen more of the library than I have of my apartment. Final are next week and will basically determine if I will pass the class or not. I have already taken my photography final and will easily pass with a B and two days ago I had my last exam for Chemistry which worried me because I knew I didnt do well (like I have on every chemistry test). I was able to look at my scores for the year and see my final grade, since the final for Chemistry is optional and will replace my lowest exam score, and I have somehow passed with a C. I have never had a class that required so much studying and time put into it. I have to be honest, I was not sure I was going to pass this class, but because of the grading curve I guess I am one of many students who doesn't do so well on the exams.
However, my Calculus class has also been tough this year and I am not so sure if I will pass it either. My Engineering class I have done well in and probably have a B in it as of now. But it will all depend on how I do on the final.
So untill Tuesday of next week rolls around, it looks like I will be seeing a lof of the library again. I cannot wait for christmas break to roll around!
Also, First Descents is accepting applications for camp in 2009! So if you fit the age criteria and are a cancer survivor definitely give it a go. They have two new camps this summer! I believe they are in Wisconsin and Oregon. I am leaning on going to Idaho because it is said to have the best whitewater and its warmer. Key word there is warmer. No more dry suits for me, ha even though I loved Montana.
I send my love to everyone!
-Nicholas
However, my Calculus class has also been tough this year and I am not so sure if I will pass it either. My Engineering class I have done well in and probably have a B in it as of now. But it will all depend on how I do on the final.
So untill Tuesday of next week rolls around, it looks like I will be seeing a lof of the library again. I cannot wait for christmas break to roll around!
Also, First Descents is accepting applications for camp in 2009! So if you fit the age criteria and are a cancer survivor definitely give it a go. They have two new camps this summer! I believe they are in Wisconsin and Oregon. I am leaning on going to Idaho because it is said to have the best whitewater and its warmer. Key word there is warmer. No more dry suits for me, ha even though I loved Montana.
I send my love to everyone!
-Nicholas
Thursday, December 4, 2008
Im a working man now
So this past Tuesday and Wednesday I have missed school due to mandatory job training at Deer Valley Ski Resort in Park City, UT. I was hired on about a month ago and have been looking forward to working as a Lift Operator ever since. I only work weekends do to my school schedule so I will be busy everday now.
Training was pretty fun and pretty easy. Deer Valley has been named #1 ski resort in North America for the second year in a row because of its 5 star qualities. I believe a seasons pass is about 1700 dollars their. Crazy huh! So half of my training was on how to be the biggest suck up to the customers and give them anything they want. We'll see how that goes.
Another crazy thing is I am one of the very few Lift Operators who is a Utah native. Most of the people hired on are from out of state and even out of country. And most of them aren't experienced skiers which really shocked me. Which is why I have been stationed to one of the main lifts on the top half of the mountain, because you have to ski from station to station and my lift doesnt really have any easy runs on it so its kinda nice. On my hour break I can ski wherever I want, which will probably be tree skiing in the powder. I love that.
I start work this weekend where Deer Valley will be hosting a Celebrity Ski Race. I dont know who is going to be there but I hope it is awesome.
Alright got to go..... Sorry for not writing in a long while.
Love,
Nicholas
Training was pretty fun and pretty easy. Deer Valley has been named #1 ski resort in North America for the second year in a row because of its 5 star qualities. I believe a seasons pass is about 1700 dollars their. Crazy huh! So half of my training was on how to be the biggest suck up to the customers and give them anything they want. We'll see how that goes.
Another crazy thing is I am one of the very few Lift Operators who is a Utah native. Most of the people hired on are from out of state and even out of country. And most of them aren't experienced skiers which really shocked me. Which is why I have been stationed to one of the main lifts on the top half of the mountain, because you have to ski from station to station and my lift doesnt really have any easy runs on it so its kinda nice. On my hour break I can ski wherever I want, which will probably be tree skiing in the powder. I love that.
I start work this weekend where Deer Valley will be hosting a Celebrity Ski Race. I dont know who is going to be there but I hope it is awesome.
Alright got to go..... Sorry for not writing in a long while.
Love,
Nicholas
Friday, November 21, 2008
Thank You
Thanks, everyone - you've made a difference again. Diego is doing much better today.
Get ready to receive an offical invitation to the Country Music Marathon on April 25th, 2009 - sign-up flyer and notification letter will be posted within the next couple of days. Time for me to get my out-0f-shape self out the door and hit the pavement. Wah!
Get ready to receive an offical invitation to the Country Music Marathon on April 25th, 2009 - sign-up flyer and notification letter will be posted within the next couple of days. Time for me to get my out-0f-shape self out the door and hit the pavement. Wah!
Also, here is a picture that was taken with Lance Armstrong - hospital finally sent us a copy. I still smile when I see Lance's hand on Kelsey's shoulder as she really didn't get why this was such a big deal (she had to miss her D.A.R.E. graduation at school and that WAS a big deal).
Thursday, November 20, 2008
Diego Fuentes
Please say a prayer for a little boy, age 5, named Diego Fuentes. This brave and adorable pirate is having a very difficult time with his cancer. He and his family could use some spiritual support. To read about his journey, please visit his website:
http://www.caringbridge.org/visit/diegofuentes
Thank you,
Lori
http://www.caringbridge.org/visit/diegofuentes
Thank you,
Lori
Tuesday, October 28, 2008
The Brave Little Soul
Earlier, I mentioned the beautiful child, Elizabeth Doxey, had recently earned her wings. Her mom, Lynn, posted the following poem on Elizabeth's website, and I found it particulary wonderful.
THE BRAVE LITTLE SOUL
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however, the little soul was sad, for this day she saw suffering in the world. She approached God and sadly asked 'Why do bad things happen, why is there suffering in the world?'
God paused for a moment and replied, 'Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts.' The little soul was confused. 'What do you mean?' she asked. God replied, 'Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their motivations disappear and they become motivated by love alone.'
The little soul began to understand and listened attentively as God continued. 'The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer to unlock this love - to create this miracle - for the good of all humanity.'
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings, fluttering, bouncing up and down, the little soul excitedly replied, 'I am brave, let me go. I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!'
God smiled and said, 'You are a brave soul I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this, so I have carefully selected many souls to care for you on your journey. These souls will help you create your miracle, however they will also share in your suffering. Two of these souls are most special and they will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. Elizabeth Jane.'
God and the brave little soul shared a smile, and then embraced. In parting, God said, 'Do not forget Elizabeth that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel you have suffered enough, just say the word, think the thought and, I will bring you home.'
Thus at that moment, the brave little soul was born into the world and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those who were always too busy, found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant families reunited and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle happened. And God was pleased.
Nick is our brave little soul (ok, brave tall soul) and I am grateful for the spiritual journey we are on together. I'm grateful for him unlocking the goodness and love and I'm grateful for all of you that have come together to join us in this journey and witness this miracle of His love.
Lori
THE BRAVE LITTLE SOUL
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however, the little soul was sad, for this day she saw suffering in the world. She approached God and sadly asked 'Why do bad things happen, why is there suffering in the world?'
God paused for a moment and replied, 'Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts.' The little soul was confused. 'What do you mean?' she asked. God replied, 'Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their motivations disappear and they become motivated by love alone.'
The little soul began to understand and listened attentively as God continued. 'The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer to unlock this love - to create this miracle - for the good of all humanity.'
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings, fluttering, bouncing up and down, the little soul excitedly replied, 'I am brave, let me go. I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!'
God smiled and said, 'You are a brave soul I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this, so I have carefully selected many souls to care for you on your journey. These souls will help you create your miracle, however they will also share in your suffering. Two of these souls are most special and they will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. Elizabeth Jane.'
God and the brave little soul shared a smile, and then embraced. In parting, God said, 'Do not forget Elizabeth that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel you have suffered enough, just say the word, think the thought and, I will bring you home.'
Thus at that moment, the brave little soul was born into the world and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those who were always too busy, found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant families reunited and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle happened. And God was pleased.
Nick is our brave little soul (ok, brave tall soul) and I am grateful for the spiritual journey we are on together. I'm grateful for him unlocking the goodness and love and I'm grateful for all of you that have come together to join us in this journey and witness this miracle of His love.
Lori
Friday, October 24, 2008
How about some good news?
Time to cherish some good news received this week...
26-year old rec'd clear scans; will keep his remission in check and is good to go for another 6 months.
7-year old had clear chest x-rays after only 3 months of chemo - tumors have vanished.
6-year old had MRI verifying continued remission status.
2-year old had clear x-rays; in the middle of treatment.
Here's a big one: I received an email about a drug company and a cautiously but promising new wonder drug. It's pre-clinical results claim: "Complete responses were observed following a single intravenous treatment in the majority of neuroblastoma models and in all alveolar Rhabdomyosarcoma tumor models, demonstrating both activity and potency." There are current clinical trials, but for 18+ patients. It's also supposed to have low toxicity! Check out the full article at http://tinyurl.com/5hrcc4.
And just for fun, a goofy picture of Nick taken up in Canada.
Have a fantastic weekend!
Lori
Monday, October 20, 2008
New Angels
This has been a particulary rough month for rhabdo warriors. I continue to participate in an online rhabdo support group and within the last two weeks alone, we have 4 new angels: Danny Zabicki, age 17; Chloe Schmidt, age 7; Finn, age 3 and Elizabeth Doxey, age 8. Elizabeth was one who pulled on my heartstrings as I got to know her over the past year. It was so sad to learn she had earned her wings on Friday. Yet, she had been battling this horrific disease for 3 years, non-stop - so we are grateful she is no longer suffering and is now in comfort and peace. It is her mother and brother that I hope you will say a prayer for as well as the family members of Danny, Chloe and Finn.
Some days are very, very hard. Today is one of those days. Maybe we can all hug our children a little tighter; pray with a little more reverence; express gratitude with a little more sincerity; respond with a little more kindness; view our world, not just our homes, with a little more awareness; and love, love, love.
I am so grateful for Nick's remission, but I am fully aware of just how fragile remission really is. I know I watched a real miracle in his healing. From the very beginning, never once did any of us say, "Why, Nick?" or "Why, me?" but I do now wonder, "Why was Nick spared but not these sweet babies, who also had faith?" Some say this is "survivor guilt", but I'm not so sure. Nothing really feels normal anymore. I just look at Nick and think, "Wow, your purpose here on earth must be REALLY big." Then again, so is mine, and so is yours.
Just feeling a bit out of sorts trying to balance all the life and death going on every day. I'll hand it all over to Christ again and He'll help me stay in the spirit of gratitude and service and understand that unconditional love heals all.
Sheesh, see what happens when I give up diet coke and start training for the marathon in April (for Nick's Warriors).
Lori
Some days are very, very hard. Today is one of those days. Maybe we can all hug our children a little tighter; pray with a little more reverence; express gratitude with a little more sincerity; respond with a little more kindness; view our world, not just our homes, with a little more awareness; and love, love, love.
I am so grateful for Nick's remission, but I am fully aware of just how fragile remission really is. I know I watched a real miracle in his healing. From the very beginning, never once did any of us say, "Why, Nick?" or "Why, me?" but I do now wonder, "Why was Nick spared but not these sweet babies, who also had faith?" Some say this is "survivor guilt", but I'm not so sure. Nothing really feels normal anymore. I just look at Nick and think, "Wow, your purpose here on earth must be REALLY big." Then again, so is mine, and so is yours.
Just feeling a bit out of sorts trying to balance all the life and death going on every day. I'll hand it all over to Christ again and He'll help me stay in the spirit of gratitude and service and understand that unconditional love heals all.
Sheesh, see what happens when I give up diet coke and start training for the marathon in April (for Nick's Warriors).
Lori
Tuesday, October 7, 2008
King of the Castle
Hey guys,
Friday I had an MRI and CT scan like I have had every two months now.... And once again they are clear and show no evidence of dissease. If anything the scans look better than the last ones, according to the radiologist. So most likely my scar tissue is going down and almost fully healed. I also had blood work and a chest x-ray on monday that were also clear. (They had to take my chest x-ray twice because my lungs were so big. May be due to all the bike riding I have been doing to school.) I also rode my bike to the Huntsman center to meet with my doctor, and if you haven't been there before, you wouldn't know that is the steepest hill ever for about 150 yards to get there since its at the top of the hill. I almost died peddling up that hill, but I just kept saying to myself... "Lance has got nothing on me, Lance has nothing on me....etc." But when I made it to the top I thought I was going to have a stroke. Ha not really but I was definitely feelin it in the legs and lungs.
So to sum things up I have reached my 6 month mark in remission, so now I only have to have scans every 3 months. So that means I am good through the holidays! Next scans will be in January. Right around the time I will be turning 20, which I am really not looking forward to. Sounds old to me.
Alright got to head to class. Im probably late again. See ya!
Love,
Nicholas William Raitt
Friday I had an MRI and CT scan like I have had every two months now.... And once again they are clear and show no evidence of dissease. If anything the scans look better than the last ones, according to the radiologist. So most likely my scar tissue is going down and almost fully healed. I also had blood work and a chest x-ray on monday that were also clear. (They had to take my chest x-ray twice because my lungs were so big. May be due to all the bike riding I have been doing to school.) I also rode my bike to the Huntsman center to meet with my doctor, and if you haven't been there before, you wouldn't know that is the steepest hill ever for about 150 yards to get there since its at the top of the hill. I almost died peddling up that hill, but I just kept saying to myself... "Lance has got nothing on me, Lance has nothing on me....etc." But when I made it to the top I thought I was going to have a stroke. Ha not really but I was definitely feelin it in the legs and lungs.
So to sum things up I have reached my 6 month mark in remission, so now I only have to have scans every 3 months. So that means I am good through the holidays! Next scans will be in January. Right around the time I will be turning 20, which I am really not looking forward to. Sounds old to me.
Alright got to head to class. Im probably late again. See ya!
Love,
Nicholas William Raitt
Thursday, September 25, 2008
Mom's Favorites
Here's my take on the big softball tournament - it was a HUGE success! Everyone stepped up in a big, big, big way. Kelsey's team, the Bukoos, scored 34 runs over 3 games - the next closest team had 19. Yes, the umpires were given permission to call anything relatively close as "safe" in order to get the scores up, but still - 34 runs - that's fantastic!
Carly's team, the Xtreme, came as volunteers headed up by coach Wes White. It was particularly touching to see the older girls help the little 10 & unders in the skills contest, which they had never participated in before. As Nick described, watching those little girls run up to him to collect their prize (a gold childhood cancer pin) while yelling, "Nick! Nick!" was wonder to my heart as Nick grinned from ear-to-ear in response.
And, Nick's buddies came through, too. I must admit when Nick told me they were coming to help, I thought, "nice, they'll be here for a whole 20 minutes". I was wrong. The Xtreme team had to leave around 2:00, which is when the "gang" showed up. They happily took over the scorekeeping responsibilities and proclaimed, "We're here for the rest of the day for whatever you need us to do." And they were!
Other than forgetting to bring the actual game softballs (truly didn't even give it a thought - I just asked the umpire, "Don't they magically appear like they do at all the other tournaments?")- everything went off without a hitch. Enormous thanks to so many - friends, family, players, parents, coaches, umpires, field staff, vendors, etc. All in all, we raised (net) over $5,300! (Watson, Macrum & Ulvin families - YOU ROCK!) We are so excited for next year!
Here are some of my favorite pictures:
Pictures:
#1 - Carly & Lee
#2 - Volunteers
#3 - Nick giving out awards
#4 - Carly helping in skills contest
#5 - Lee, Carly, Kacie, Nick & Todd
#6 - Denise & Lori
#7 - Wes and a happy skills contest winner
Carly's team, the Xtreme, came as volunteers headed up by coach Wes White. It was particularly touching to see the older girls help the little 10 & unders in the skills contest, which they had never participated in before. As Nick described, watching those little girls run up to him to collect their prize (a gold childhood cancer pin) while yelling, "Nick! Nick!" was wonder to my heart as Nick grinned from ear-to-ear in response.
And, Nick's buddies came through, too. I must admit when Nick told me they were coming to help, I thought, "nice, they'll be here for a whole 20 minutes". I was wrong. The Xtreme team had to leave around 2:00, which is when the "gang" showed up. They happily took over the scorekeeping responsibilities and proclaimed, "We're here for the rest of the day for whatever you need us to do." And they were!
Other than forgetting to bring the actual game softballs (truly didn't even give it a thought - I just asked the umpire, "Don't they magically appear like they do at all the other tournaments?")- everything went off without a hitch. Enormous thanks to so many - friends, family, players, parents, coaches, umpires, field staff, vendors, etc. All in all, we raised (net) over $5,300! (Watson, Macrum & Ulvin families - YOU ROCK!) We are so excited for next year!
Here are some of my favorite pictures:
Pictures:
#1 - Carly & Lee
#2 - Volunteers
#3 - Nick giving out awards
#4 - Carly helping in skills contest
#5 - Lee, Carly, Kacie, Nick & Todd
#6 - Denise & Lori
#7 - Wes and a happy skills contest winner
Monday, September 15, 2008
My Tournament
Nick here,
September 13th my family and I hosted the First Annual Charity Softball Tournament at the Weber County Fairgrounds. It was a really good time and we raised a good amount of money that will go to my two charities of choice, First Descents and Cure Search. The tournament started at 7:30 am and ended around 7:30 pm. It was awesome to see how everyone pitched in and donated. One team mom made all the parents from their team pull out their wallets and give up all their money they had on them to donate. It was cool.
I was busy all day taking photos, handing out pins to the skill contest winners, and taking score of games. I was so tired at the end of the day as well as sun burnt. I have the worst sun glass tan line ever. Ha its funny. We haven't collected all the dontations yet but we so far have raised $4,000. It will be split up evenly between the two charities but $2,ooo will send two people to First Descents camp. I am honored to be a part of that.
I cant wait untill next year when the number of teams will be doubled and I cant even imagine how much more money will be raised. Its going to be huge! Anyways here are some of my favorite pics.
September 13th my family and I hosted the First Annual Charity Softball Tournament at the Weber County Fairgrounds. It was a really good time and we raised a good amount of money that will go to my two charities of choice, First Descents and Cure Search. The tournament started at 7:30 am and ended around 7:30 pm. It was awesome to see how everyone pitched in and donated. One team mom made all the parents from their team pull out their wallets and give up all their money they had on them to donate. It was cool.
I was busy all day taking photos, handing out pins to the skill contest winners, and taking score of games. I was so tired at the end of the day as well as sun burnt. I have the worst sun glass tan line ever. Ha its funny. We haven't collected all the dontations yet but we so far have raised $4,000. It will be split up evenly between the two charities but $2,ooo will send two people to First Descents camp. I am honored to be a part of that.
I cant wait untill next year when the number of teams will be doubled and I cant even imagine how much more money will be raised. Its going to be huge! Anyways here are some of my favorite pics.
Friday, September 12, 2008
Dr. Rahbar, Part II
I received the following email from Dr. Albritton this morning:
"Dr. Rahbar and radiologists reviewed films at conference and felt images most consistent with post-surgical (and radiation) changes, and that surveillance should continue..."
We're clear until October!
Mom
"Dr. Rahbar and radiologists reviewed films at conference and felt images most consistent with post-surgical (and radiation) changes, and that surveillance should continue..."
We're clear until October!
Mom
Thursday, September 11, 2008
First Annual Charity Softball Tournament
It's almost here! The players are ready, the coaches are ready, the umpires are ready and the volunteers are ready!
8:00 a.m. Saturday morning, September 13th at the Weber County Fairgrounds - the games will begin for our First Annual Charity Softball Tournament. All net proceeds (after tournament expenses) will go to Nick's two favorite charities: CureSearch and First Descents.
It's not too late to pledge money for your favorite team. Kelsey's team, Bukoos, is playing in the 12u bracket - you can pledge $1, $5, $10 - whatever you want - for each run scored in all 3 games (I'm estimating 12 to 15 runs). Or you may make a donation to the Empowered Wealth Foundation (which will split the donation between the two charities) or donate directly to CureSearch or First Descents. Go to the link below for a pledge/donation form:
http://quadrantliving.com/Events/documents/EWF%20Softball%20Pledge%20Form.pdf
Please fax form to: c/o Lori Brower, 801-397-3301, or mail to:
The Empowered Wealth Foundation
801 N. 500 W., Suite 200
Bountiful, UT 84010
If you have any questions, email me at: lorib@quadrantliving.com
Pictures and highlights will follow next week!
Go Cancer Warriors!
8:00 a.m. Saturday morning, September 13th at the Weber County Fairgrounds - the games will begin for our First Annual Charity Softball Tournament. All net proceeds (after tournament expenses) will go to Nick's two favorite charities: CureSearch and First Descents.
It's not too late to pledge money for your favorite team. Kelsey's team, Bukoos, is playing in the 12u bracket - you can pledge $1, $5, $10 - whatever you want - for each run scored in all 3 games (I'm estimating 12 to 15 runs). Or you may make a donation to the Empowered Wealth Foundation (which will split the donation between the two charities) or donate directly to CureSearch or First Descents. Go to the link below for a pledge/donation form:
http://quadrantliving.com/Events/documents/EWF%20Softball%20Pledge%20Form.pdf
Please fax form to: c/o Lori Brower, 801-397-3301, or mail to:
The Empowered Wealth Foundation
801 N. 500 W., Suite 200
Bountiful, UT 84010
If you have any questions, email me at: lorib@quadrantliving.com
Pictures and highlights will follow next week!
Go Cancer Warriors!
Wednesday, September 3, 2008
Dr. Rahbar says it's ok...
Just received an email from Dr. Albritton. She just received an email from Dr. Rahbar after he reviewed Nick's scans and he thinks the scans are consistent with post-op and post-radiation changes - probably fine. He will still present scans at next week's head and neck tumor board to be sure. I'm satisfied with his assessment as he was the one actually looking at Nick's sinus area in living color, up close and personal.
It looks like we are in the clear for another month! Nick, about your laundry...
Mom
It looks like we are in the clear for another month! Nick, about your laundry...
Mom
Monday, August 25, 2008
College
So my first day as a freshman and the University of Utah was today and boy was it a long day. I only had 3 classes but they were spaced out and I rode my bike everywhere. I started off the day with Digital Photo which was cool. Then headed back home and had some lunch. I then rode my bike back to school where I had Calc and Chemistry. Both of them intimidated me for both proffesors said that half of the class will not pass the class. Crap! My chemistry class has over 200 kids in it so that made everyone freak out. But I am still ready for school and happy with my desicion to push myself. Besides I'm not paying for it... ha just kidding Mom and Dad.
Alright I am going to study now.... SIKE
Alright I am going to study now.... SIKE
Oh Canada
Nick here..
Last monday I just got back from my first trip out of the country (other than a cruise) to Canada. I landed in Toronto but stayed like 3 hours north in a beautiful place called Owen Sound. I stayed with friends of the family. The Paterson family, who welcomed me with open arms, couldn't wait to get me out on the water. The three cottages that they own are right on the water of Lake Huron. The water was crystal clear and perfect for water skiing, kayaking, fishing, and showering. I did them all!
Other than hanging out by the water all day, there was a folk festival in town called Summerfolk which was all weekend and we had a fun time hanging out there listening to good music and meeting lots of locals.
Last monday I just got back from my first trip out of the country (other than a cruise) to Canada. I landed in Toronto but stayed like 3 hours north in a beautiful place called Owen Sound. I stayed with friends of the family. The Paterson family, who welcomed me with open arms, couldn't wait to get me out on the water. The three cottages that they own are right on the water of Lake Huron. The water was crystal clear and perfect for water skiing, kayaking, fishing, and showering. I did them all!
Other than hanging out by the water all day, there was a folk festival in town called Summerfolk which was all weekend and we had a fun time hanging out there listening to good music and meeting lots of locals.
It was fun meeting everyone and having a blast in the water. I got a lot better on a single ski and give props to the guys who can ski a slalom course.
I came home so tired and so sore from paddling in the kayak so much. I also had gained weight from eating so much delicious food in big portions. ha.
I would like to thank Jay and Ann for the invite and the great time the gave me. Hopefully I will be back again next year and will have just as much fun as I did this year. Thanks!
So long Canada!
Good news!
Katie, Dr. Chen's nurse, called today. Dr. Chen presented Nick's scans to the tumor board this morning and then again to the radiation department. It was stated the bone erosion is most likely due to radiation damage. Dr. Chen is very excited and not too concerned with the MRI. She'll plan on seeing Nick in October for his next set of scans.
As we try not to get to upset with possible "worrisome" news, we also don't get too excited about "probable..." good news. We are still waiting to hear from Boston, although we are breathing much easier and the wait is bearable. Regardless, today is a good day!
Lori
As we try not to get to upset with possible "worrisome" news, we also don't get too excited about "probable..." good news. We are still waiting to hear from Boston, although we are breathing much easier and the wait is bearable. Regardless, today is a good day!
Lori
Sunday, August 24, 2008
Surgeon out of town
Well, crap. On Friday, we heard from Dr. Albritton (young adult oncologist at Dana Farber in Boston) and she said Dr. Rahbar (Nick's surgeon at Children's Hospital Boston) is out of town until Sept 3rd. She may still meet with his fill-in and her radiologist; she'll discuss with Dr. Chen this week. In all probability, we won't hear anything until after the 3rd. She also suggested we try to see Dr. Sharma (Nick's ENT here in SLC) so he could just peek up in his sinuses and see what's going on, but Dr. Sharma is booked solid until Sept 3rd. Fine.
In the meantime, Nick was my co-host for Kelsey's end-of-season softball party, with over 40 people attending. It was a huge success, especially when they viewed the video Nick helped edit highlighting their season with pictures and music. Nick later said he caught himself grinning ear to ear as he watched the girls cheer in pure delight embracing the memories.
We also have our first annual charity softball tournament confirmed for Sept 13th. As soon as I can figure out how to do it, I will post an information sheet and pledge form to help raise money for the 2 charities Nick has selected. We have a lot of work to do so that will help pass the time as we wait.
School starts tomorrow for Nick (freshman in college), Carly (senior in high school) and Kelsey (first year in junior high). Nick is a little under the weather with a cold but he is excited.
Have a great week, everyone!
Lori/Mom
In the meantime, Nick was my co-host for Kelsey's end-of-season softball party, with over 40 people attending. It was a huge success, especially when they viewed the video Nick helped edit highlighting their season with pictures and music. Nick later said he caught himself grinning ear to ear as he watched the girls cheer in pure delight embracing the memories.
We also have our first annual charity softball tournament confirmed for Sept 13th. As soon as I can figure out how to do it, I will post an information sheet and pledge form to help raise money for the 2 charities Nick has selected. We have a lot of work to do so that will help pass the time as we wait.
School starts tomorrow for Nick (freshman in college), Carly (senior in high school) and Kelsey (first year in junior high). Nick is a little under the weather with a cold but he is excited.
Have a great week, everyone!
Lori/Mom
Wednesday, August 20, 2008
Results, Part 2
Nick had a CT scan done yesterday - poor kid - the contrast they gave him made him pretty sick. Thank goodness the scan only took about 15 minutes.
We met with Dr. Chen this morning and the scan indicates bone erosion in his right maxillary sinus area. Dr. Chen has requested that a copy of this scan be sent to Dr. Rhabar, Nick's surgeon in Boston. She would like him to look at the CT done yesterday as well as the MRI done last week. We're hoping the bone erosion was always there or was a result of the surgery - Dr. Rhabar will be able to determine. I have sent a copy of the scans to Dr. Albritton, the oncologist at Dana Farber, asking her to coordinate with Dr. Rhabar and review his condition. More waiting, unfortunately.
We've bumped up his scan dates to Oct 3rd (meeting with Dr. Chen on Oct 6th). Slight possibility of needing another biopsy (Nick said, NO - he's sick of people sticking things up his nose). Nick also has caught a cold and his chest is congested. I'm sure I'll be calling him hourly to ask him how he's feeling. Until then...he still has to do his own laundry.
Nick will be posting later about his trip to Canada - he came back saying, "eh?" and "aboowt". School starts on MONDAY!
Thanks for checking in!
Lori/MOM
We met with Dr. Chen this morning and the scan indicates bone erosion in his right maxillary sinus area. Dr. Chen has requested that a copy of this scan be sent to Dr. Rhabar, Nick's surgeon in Boston. She would like him to look at the CT done yesterday as well as the MRI done last week. We're hoping the bone erosion was always there or was a result of the surgery - Dr. Rhabar will be able to determine. I have sent a copy of the scans to Dr. Albritton, the oncologist at Dana Farber, asking her to coordinate with Dr. Rhabar and review his condition. More waiting, unfortunately.
We've bumped up his scan dates to Oct 3rd (meeting with Dr. Chen on Oct 6th). Slight possibility of needing another biopsy (Nick said, NO - he's sick of people sticking things up his nose). Nick also has caught a cold and his chest is congested. I'm sure I'll be calling him hourly to ask him how he's feeling. Until then...he still has to do his own laundry.
Nick will be posting later about his trip to Canada - he came back saying, "eh?" and "aboowt". School starts on MONDAY!
Thanks for checking in!
Lori/MOM
Tuesday, August 12, 2008
Scan Update
Nick had an MRI done yesterday at noon and we followed up with an appointment with Dr. Chen at 4:00. We were all prepared to hear the results after waiting for 1 1/2 hours when we were told the results weren't ready and would have to call tomorrow. I'd forgotten how annoying these appointments can be. It was nice to watch Dr Chen - she would just grin when she looked at Nick.
I called this morning with no results and finally I drove up to radiology anyway and my pal, Ron, went ahead and gave me the preliminary report (not officially signed off by an md). Looks like there is new growth which they consider "worrisome". This is very similar to what they said back January. We are assuming this is scar tissue and Nick will have a CT scan next week to confirm it. Dr. Chen isn't too worried, though, and said regardless, the only thing she will do differently is to move up his next set of scheduled scans from November to October.
So for now, we're back in the perpetual world of gray and waiting. To help speed up time, Nick is off to Canada tomorrow morning until Monday. He'll have a blast! The rest of us are scrambling to put together our charity softball tournament on Sept 13th. Much more info to follow.
Til then...
Lori
I called this morning with no results and finally I drove up to radiology anyway and my pal, Ron, went ahead and gave me the preliminary report (not officially signed off by an md). Looks like there is new growth which they consider "worrisome". This is very similar to what they said back January. We are assuming this is scar tissue and Nick will have a CT scan next week to confirm it. Dr. Chen isn't too worried, though, and said regardless, the only thing she will do differently is to move up his next set of scheduled scans from November to October.
So for now, we're back in the perpetual world of gray and waiting. To help speed up time, Nick is off to Canada tomorrow morning until Monday. He'll have a blast! The rest of us are scrambling to put together our charity softball tournament on Sept 13th. Much more info to follow.
Til then...
Lori
Tuesday, August 5, 2008
Official Team Sarcoma Update
Reposted from an email received 8/4/08 from the founder of "Team Sarcoma - The Liddy Shriver Sarcoma Initiative"
You may be interested in the following press release which was made available on the web early this morning:
8,000 People Join the Team Sarcoma Initiative to Fight a Rare Cancer
"From its humble beginnings in 2003, when seven people who called themselves "Team Sarcoma" biked 200 miles in Louisiana, the Team Sarcoma Initiative has become an international movement. More than 8,000 people worldwide participated in this year's Initiative, surpassing the 3,400 who participated last year. Events in 14 countries were hosted by individuals, advocacy groups and medical centers seeking to raise awareness of sarcoma, a cancer that affects hundreds of thousands of people worldwide." ...
For the complete press release, see http://tinyurl.com/59e3fc . You may know some of the patients, survivors, caregivers and physicians that are quoted in it.
For the list of all the organizations involved, see http://tinyurl.com/4znxd8
For a list of all the events that took place, see http://tinyurl.com/6jc9nb
You might also be interested in two earlier press releases that give additional perspectives on this effort both of which also contain quotations from a number of patients, survivors, caregivers and physicians.
1. Medical Centers and Concerned Groups Unite in the International Team Sarcoma Initiative: http://tinyurl.com/6jq4fs
2. Patients, Survivors, and Caregivers Worldwide Band Together to Fight a Rare Cancer: http://tinyurl.com/5hba9e
If you are interested in forming a team in the 2009 Team Sarcoma Initiative (July 18-26, 2009) and being a part of this international effort, please contact me at shriver@genesis2.com.
Best regards,
Bruce
You may be interested in the following press release which was made available on the web early this morning:
8,000 People Join the Team Sarcoma Initiative to Fight a Rare Cancer
"From its humble beginnings in 2003, when seven people who called themselves "Team Sarcoma" biked 200 miles in Louisiana, the Team Sarcoma Initiative has become an international movement. More than 8,000 people worldwide participated in this year's Initiative, surpassing the 3,400 who participated last year. Events in 14 countries were hosted by individuals, advocacy groups and medical centers seeking to raise awareness of sarcoma, a cancer that affects hundreds of thousands of people worldwide." ...
For the complete press release, see http://tinyurl.com/59e3fc . You may know some of the patients, survivors, caregivers and physicians that are quoted in it.
For the list of all the organizations involved, see http://tinyurl.com/4znxd8
For a list of all the events that took place, see http://tinyurl.com/6jc9nb
You might also be interested in two earlier press releases that give additional perspectives on this effort both of which also contain quotations from a number of patients, survivors, caregivers and physicians.
1. Medical Centers and Concerned Groups Unite in the International Team Sarcoma Initiative: http://tinyurl.com/6jq4fs
2. Patients, Survivors, and Caregivers Worldwide Band Together to Fight a Rare Cancer: http://tinyurl.com/5hba9e
If you are interested in forming a team in the 2009 Team Sarcoma Initiative (July 18-26, 2009) and being a part of this international effort, please contact me at shriver@genesis2.com.
Best regards,
Bruce
Sunday, August 3, 2008
Summer Update
Mom here... I've been bugging Nick to update his blog but my nagging skills have seemed to dissapate a bit. So, I've taken it upon myself to update those that are interested in our boy, Nick.
Nick and his dad's side of the family just returned from Nebraska for a family reunion (may I say, lonnnnnggggg ride); ready to start college on Aug 25th; trip planned to Canada to visit Jay & Anne Paterson on Aug 13th; and the biggie - Nick moved out with 3 other young men close to the Univ of Utah today! Scooter, his loyal golden retriever will miss him the most. Lee, Kelsey & I helped Nick move and got to check out the new pad (rental house). All I can say is the 3 second rule DOES NOT apply here. If any food falls on the floor, THROW IT AWAY! Other than that, I hope he enjoys his independence and freedom in the 3 weeks before school starts and the pressure of school, work, money, food, laundry.... get the best of him. I forgot - girls! He'll be just fine.
His next MRI is on Aug 11th - my birthday! Kelsey told me the other day, "Hey Mom, I know what you want for your birthday." "What's that?" I asked. She said, "You want Nick's scans to be clean, don't you?" I said, "I sure do!" She then asked, "Can that be from all of us?" Little stinker.
Turns out Primary Children's Hospital won't let Nick volunteer until he has one year remission under his belt. So, what we have decided to do is kick off our first annual charitable softball tournament to raise money for First Descents and rhabdo research. Since our family has loads of experience and connections with softball, we thought we may very well be successful in a long-term effort in giving back through this venue. We had a meeting of some influential local people and are in the works to see if we can pull it off in the month of September - National Childhood Cancer Month. I'll keep everyone posted.
The Team Sarcoma Walk went well, considering just a handful attended in Nick's behalf. Lee and I were out of town, dang it! From what I can wrangle out of Nick was that Dr. Chen was there with her husband and she thoroughly enjoyed introducing Nick to EVERYONE as her trophy patient. Pretty cute! Also, Nick's dad brought out the boat for some extra fun. Here are a couple picts:
Jerry, Denise (one of the fairy godmothers), Nick, Kelsey, Jake, Lynn, Todd & Dr. Chen
Jake & Nick getting ready to roll!
Nick and his dad's side of the family just returned from Nebraska for a family reunion (may I say, lonnnnnggggg ride); ready to start college on Aug 25th; trip planned to Canada to visit Jay & Anne Paterson on Aug 13th; and the biggie - Nick moved out with 3 other young men close to the Univ of Utah today! Scooter, his loyal golden retriever will miss him the most. Lee, Kelsey & I helped Nick move and got to check out the new pad (rental house). All I can say is the 3 second rule DOES NOT apply here. If any food falls on the floor, THROW IT AWAY! Other than that, I hope he enjoys his independence and freedom in the 3 weeks before school starts and the pressure of school, work, money, food, laundry.... get the best of him. I forgot - girls! He'll be just fine.
His next MRI is on Aug 11th - my birthday! Kelsey told me the other day, "Hey Mom, I know what you want for your birthday." "What's that?" I asked. She said, "You want Nick's scans to be clean, don't you?" I said, "I sure do!" She then asked, "Can that be from all of us?" Little stinker.
Turns out Primary Children's Hospital won't let Nick volunteer until he has one year remission under his belt. So, what we have decided to do is kick off our first annual charitable softball tournament to raise money for First Descents and rhabdo research. Since our family has loads of experience and connections with softball, we thought we may very well be successful in a long-term effort in giving back through this venue. We had a meeting of some influential local people and are in the works to see if we can pull it off in the month of September - National Childhood Cancer Month. I'll keep everyone posted.
That's it for now! Many thanks to everyone with their continued prayers and support!
Lori
Monday, July 14, 2008
First Descents
July 4th I had the opportunity of going to a cancer survivor/fighter summer camp in Kalispell, Montana. It was a week long kayaking based getaway from the real world where I was able to get my bearings back and think about what I want to do with my future. It was one of the best trips I have ever had! I met a lot of new people and made some really good friends.
First Descents does a lot for cancer survivors/fighters that modern medicine cannot. I did not have to pay one penny for the week stay. My parents paid for the plane ticket but that was it. Even the plane ticket would have been paid for if money was an issue. First Descents is strictly funded by sponsors and donations. I agreed on being an ambassador for the camp by help raising money and maybe in the future even being a camp counselor. I hope this summer to have a softball game in which all the money raised will go to First Descents. Anyways, here is a summary of the days at camp:
I was picked up at the airport by two camp counselors who had the "nicknames" of Matteo and George. They told us everyone at camp would be givin a nickname at camp if they did not already have one from the year before. I was curious to see what would be givin to me. We picked up some more campers who were all talkative in the van. They were from all over the nation.
Finally we arrived at the cabin in which we would stay the next 6 nights having the time of our lives. At the cabin I met all the counselors and campers. Right away the counselors began asking me questions to help determine my nickname. As soon as I told them my name was Nick, they knew right away that my nickname was going to be "Nickname". Ha. So the entire camp I was called Nickname instead of Nick. I kinda liked it!
That night we were fitted for our dry suits (since the water temp was 45 degrees) and kayaks. I was really excited to get out on the river the next morning to try them out. The next morning we went out to Lake Macdonald where we learned paddle strokes and how to "wet exit" our kayaks if we ever flipped over. Because we had spray skirts on we were attached to the kayak skin tight so that water could not enter as we went through rapids. You had to learn how to stay calm and pull your spray skirt off. We then played a game of kayak polo which was fun. We then took off to the river where we learned how to enter and exit "eddies" which is where a section of non moving water is that is good for taking breaks and waiting for the rest of the group. It is really difficult going from moving water to non moving water. Your kayak has a tendency to want to flip over if you dont lean right. I admit I tipped over a couple times the first couple days.
The last day of kayaking I was able to pull of my first complete roll in moving water! I was so stoked! I had been working on it all week with the counselor's help but had never done it on my own in moving water. It is kinda hard at first to learn to keep your cool and get set up under water to use your paddle to roll yourself back upright. But I finally did it and I had the biggest smile when I did. One of the counselors who I was closest with (Corey) was right next to me when I did it and he was so proud. It was good having him impressed when he was a pro kayaker and almost made the olympic team in his prime. He also coached the womens olympic kayak team in '96 which took a bronze. Anyways, after completing the roll and looking around I noticed that everyone had paddled on shore and were watching me. They all clapped and were happy for me since I was the only camper to do one. (I am not bragging I swear) Then the camera guys paddled over and told me to do it again for the camera. I was able to do it again on my first try and I am hoping that the footage makes it on the documentary that the guys are making of First Descents. I was also interviewed at the end of the day just like every camper was. The documentary is supposed to come out in the spring. It should be pretty neat.
So even though my roll was one of my highlights of the trip, it could not top the final night at camp where we had a closing prayer and shared stories with everyone. We started off by circling around a little kiddie pool with water in it, holding candles inside glass cups. It was pitch dark and we were told to say any prayer we felt nessesary and to put the candle in the water anytime we wanted. Most people were pretty emotional and took their time. We then sang songs for a while and then moved onto the fire pit. At the fire pit, one of the pro kayakers (Brad) told us about one of his trips to some foreign country where he was shooting a kayak video. He told us he was having some bad luck with his kayaking and that they were thinking of leaving without any footage. The local tribe there said they wanted to give Brad a blessing that would bring him luck. They tied on his wrist a blessed ribbon called a "Baci" ribbon that the cheif had blessed and tied on him. So we were all given a Baci ribbon that we were to tie on the person next to us while we said a prayer silently. It was really cool!
Finally saying goodbye was the hardest part. It was cool to see how close some people can get in just a week. One of the local kayakers that helped out, who's nickname was Burn Rubber told me that I should really try to get into paddling and if I did he would ship me one of his older kayaks for free. He said he had like 6 and would love to give me one. I felt really honored for him to tell me that, since I knew that all he did was kayak and loved his kayaks. I just recently found out there is a kayak park like 15 minutes away that I would like to try out. I am trying to convince a buddy to kayak with me since your supposed to paddle with others for safety reasons. I am still looking.
Anyways, to sum things up, First Descents is an awesome program that I plan on attending years to come. It was the best summer trip I have had in a long time and I cant wait to go back. I really hope they have a ski camp soon so that I could be a couselor or something. My paddling skills aren't good enough to be a counselor yet. If you are a cancer survivor or fighter I am telling you that you have to go next year. It is the most fun ever and it does a lot of help for the other campers as well as yourself. You learn a lot about yourself.
Alright here are some photos:
Team Sarcoma Utah Awareness Walk
Hi everyone!
The 3rd Annual Team Sarcoma Utah Awareness Walk is being held this Saturday, July 19th at Jordanelle State Park. As you may remember, last year we had quite a group supporting Nick, sporting "Cowboy Up" tee shirts. Well, our little group made the newsletter/flyer announcing this year's event. Please attend if you can (Lee and I, unfortunately will be out of town). We truly support this endeavor as research funding for childhood cancer is rapidly running out of money and many trials have been closed due to lack of funds. The Liddy Shriver Foundation does a fantastic job in raising awareness for sarcomas so for us participating with Nick, we raise both awareness for childhood cancer and sarcomas.
Nicholas Raitt, (back row center) along with many loved ones and friends took part in the Team Sarcoma Utah event in 2007. They attended in support of Nicholas and wore T-shirts with COWBOY UP across the front, Nicholas’s favorite expression. They were a lively, fun, and caring group. We look forward to seeing them at the 2008 Sarcoma Awareness Week Walk.
Sarcoma patients, survivors, families, friends, and healthcare providers are invited to join the third annual Team Sarcoma Utah awareness walk and BBQ. The event will take place Saturday, July 19 from 2 to 6 p.m. at Jordanelle State Park on Highway 40, between I-80 and Heber City.
For questions about this event, please e-mail Susie Crabtree at
susie.crabtree@hci.utah.edu.
For more information about sarcoma, please visit the following websites:
www.huntsmancancer.org/sarcoma
www.hci.utah.edu/sarc
www.liddyshriversarcomainitiative.org
*Sarcoma Awareness Week is part of the Liddy Shriver Sarcoma Initiative
The 3rd Annual Team Sarcoma Utah Awareness Walk is being held this Saturday, July 19th at Jordanelle State Park. As you may remember, last year we had quite a group supporting Nick, sporting "Cowboy Up" tee shirts. Well, our little group made the newsletter/flyer announcing this year's event. Please attend if you can (Lee and I, unfortunately will be out of town). We truly support this endeavor as research funding for childhood cancer is rapidly running out of money and many trials have been closed due to lack of funds. The Liddy Shriver Foundation does a fantastic job in raising awareness for sarcomas so for us participating with Nick, we raise both awareness for childhood cancer and sarcomas.
Here is the information from the flyer:
Celebrate
Sarcoma Awareness Week
July 12 - 20, 2008
Celebrate
Sarcoma Awareness Week
July 12 - 20, 2008
Nicholas Raitt, (back row center) along with many loved ones and friends took part in the Team Sarcoma Utah event in 2007. They attended in support of Nicholas and wore T-shirts with COWBOY UP across the front, Nicholas’s favorite expression. They were a lively, fun, and caring group. We look forward to seeing them at the 2008 Sarcoma Awareness Week Walk.
Sarcoma patients, survivors, families, friends, and healthcare providers are invited to join the third annual Team Sarcoma Utah awareness walk and BBQ. The event will take place Saturday, July 19 from 2 to 6 p.m. at Jordanelle State Park on Highway 40, between I-80 and Heber City.
For questions about this event, please e-mail Susie Crabtree at
susie.crabtree@hci.utah.edu.
For more information about sarcoma, please visit the following websites:
www.huntsmancancer.org/sarcoma
www.hci.utah.edu/sarc
www.liddyshriversarcomainitiative.org
*Sarcoma Awareness Week is part of the Liddy Shriver Sarcoma Initiative
Sunday, June 8, 2008
My Mom is mad!
So now that I have hair I think its so fun to do the craziest stuff with it. A few days ago I went to a salon and said, "I want a killer mohawk!". They said that would be no problem. I then went home and my parents weren't surprised that I had gotten one. But they weren't happy. I loved it! And then today I decided it was necessary to take my hair to another level. I wanted something that not many people have and something that grabs your attention and says, "Hey I mean business!". HA. So I had my buddy buzz a design in my head. I told him I wanted a "shooting star". He just laughed and said, "Lets do this!". After it was done I was all smiles because I knew my parents wouldn't be thrilled and that the guys would love it. I was surprised when I went upstairs however and all my mom did was sigh and say, "Eh, its alright". I think its pretty good for doing it ourselves and will definitely be showing it off wherever I go. Here are some pics though. You make your own decision on another moment in my crazy life. I will not be offended by any criticism that is posted. Ha
p.s. Jay will Canada accept this hairstyle?!
p.s. Jay will Canada accept this hairstyle?!
Thursday, June 5, 2008
Well, we tried...
With full intentions to go to San Diego to attend the Optimum Health Institute (OHI) for a full week (the minimum stay of a 3-week course), Nick and I lasted 36 hours. I'm torn between feelings of being an utter failure, a quitter, a spoiled brat and a baby to making the right decision that was best for both Nick and I.
We arrived Sunday afternoon with our positive attitudes ready for the vegan adventure necessary to cleanse and detox our bodies. We had a tour of the nice facility and then checked into our townhouse, which had a very peculiar smell to it. Hmm. No worries, went back outside to enjoy the fabulous weather. We picked up our new daytimers and water bottles and skipped off to our first orientation. Their philosophies make sense and we looked forward to our classes. First - dinner at 5:15. The dining room had a very peculiar smell to it. Hmm. Dinner consisted of a small salad with mostly sprouts; salsa, dried seed crackers, seed spread that looked similar to Dijon mustard, and my personal favorite, sauerkraut. Not cooked, however, just fermented. We tried a bite of everything. Ate only the salad. Cringed a little when one return participant informed us this was going to be our best meal of our stay.
Class later that evening was informative. We walked back to our room, sat on the couch, looked at each other and laughed. Room still smelled but we were pooped so off to bed by 9:00. I talked to Lee that night; he and Natalie were off to dinner and a movie. This was enough to bring me to tears. He tried valiantly to cheer me up, "Look at your schedule - don't you have have tons of stuff lined up?" But that made me cry harder because what was lined up was enema training with wheat grass implants (yes, this means what you think...), wheat grass juicing and colonics that we had signed up for earlier today.
Next morning, we went to join the exercise class - nice and easy. Then a beautiful treat of fresh watermelon for breakfast and we even drank the shot of watermelon rind that accompanied the fruit. Not too bad. Enema training followed; not too bad. Wheat grass juicing; not too bad - didn't come back up. Gosh, lunch already? Similar to dinner, including the smell. I ate the salad. Another interesting class; promises that our palate would change and the taste would get better. Continued emphasis of combining our mind, body & spirit to heal our bodies. Ok. We went to the store and bought our enema kits determined to do this. Dinner? Hallelujah! No, wait... the smell, the sauerkraut, the barely being able to eat the sprouts - all brought tears again. The raging headache, Nick looking at me as he held his stomach saying he couldn't do this anymore. I went to the night class as Nick tried out his new purchase and put the training to work. Back in our rooms, we listened to probably one of the best playoff hockey games in history through my computer. Nick and I shared stories - he proclaimed he will NEVER try the enema again and I tried to not hurl with the smell of our room and the sprouts in my stomach not agreeing. What we had to look forward to was the 3 day juice fast; no fruit juice mind you, simply the meals we've been throwing away, except run through a juicer. My mind, body & spirit was screaming to get out, NOW!
Again, I spoke to Lee and the tears poured. Even if he thinks I'm a baby, he still said we should come home. I just kept repeating, "This is terrible. It's just terrible!" Nick and I both slept fitfully. I came into his room about 7:00 a.m. Tuesday morning and I said, "Let's ditch this joint" and he was thrilled! It took us over an hour to pack as we both broke out in cold sweats, and fatigue so strong we had to keep lying back down to rest. We checked out, called a cab and when he said, "where to?", we said, "it doesn't matter!". We went straight to a restaurant and had a giant glass of orange juice. Once able to hold our heads up and speak, we made arrangements to stay at the Hyatt by SeaWorld and off we went to spend the day with Shamu.
We arrived back home last night feeling much, much better. I still believe very much in what OHI's philosophies; however, I need to research a much gentler approach for those of us that are weak in physical endurance. I would like to extend to Lee and Natalie that Nick and I have a much greater appreciation and admiration for them completing TWO weeks at OHI. Seriously, that is amazing and I stand in awe!
Here's a few pictures of our great escape:
We arrived Sunday afternoon with our positive attitudes ready for the vegan adventure necessary to cleanse and detox our bodies. We had a tour of the nice facility and then checked into our townhouse, which had a very peculiar smell to it. Hmm. No worries, went back outside to enjoy the fabulous weather. We picked up our new daytimers and water bottles and skipped off to our first orientation. Their philosophies make sense and we looked forward to our classes. First - dinner at 5:15. The dining room had a very peculiar smell to it. Hmm. Dinner consisted of a small salad with mostly sprouts; salsa, dried seed crackers, seed spread that looked similar to Dijon mustard, and my personal favorite, sauerkraut. Not cooked, however, just fermented. We tried a bite of everything. Ate only the salad. Cringed a little when one return participant informed us this was going to be our best meal of our stay.
Class later that evening was informative. We walked back to our room, sat on the couch, looked at each other and laughed. Room still smelled but we were pooped so off to bed by 9:00. I talked to Lee that night; he and Natalie were off to dinner and a movie. This was enough to bring me to tears. He tried valiantly to cheer me up, "Look at your schedule - don't you have have tons of stuff lined up?" But that made me cry harder because what was lined up was enema training with wheat grass implants (yes, this means what you think...), wheat grass juicing and colonics that we had signed up for earlier today.
Next morning, we went to join the exercise class - nice and easy. Then a beautiful treat of fresh watermelon for breakfast and we even drank the shot of watermelon rind that accompanied the fruit. Not too bad. Enema training followed; not too bad. Wheat grass juicing; not too bad - didn't come back up. Gosh, lunch already? Similar to dinner, including the smell. I ate the salad. Another interesting class; promises that our palate would change and the taste would get better. Continued emphasis of combining our mind, body & spirit to heal our bodies. Ok. We went to the store and bought our enema kits determined to do this. Dinner? Hallelujah! No, wait... the smell, the sauerkraut, the barely being able to eat the sprouts - all brought tears again. The raging headache, Nick looking at me as he held his stomach saying he couldn't do this anymore. I went to the night class as Nick tried out his new purchase and put the training to work. Back in our rooms, we listened to probably one of the best playoff hockey games in history through my computer. Nick and I shared stories - he proclaimed he will NEVER try the enema again and I tried to not hurl with the smell of our room and the sprouts in my stomach not agreeing. What we had to look forward to was the 3 day juice fast; no fruit juice mind you, simply the meals we've been throwing away, except run through a juicer. My mind, body & spirit was screaming to get out, NOW!
Again, I spoke to Lee and the tears poured. Even if he thinks I'm a baby, he still said we should come home. I just kept repeating, "This is terrible. It's just terrible!" Nick and I both slept fitfully. I came into his room about 7:00 a.m. Tuesday morning and I said, "Let's ditch this joint" and he was thrilled! It took us over an hour to pack as we both broke out in cold sweats, and fatigue so strong we had to keep lying back down to rest. We checked out, called a cab and when he said, "where to?", we said, "it doesn't matter!". We went straight to a restaurant and had a giant glass of orange juice. Once able to hold our heads up and speak, we made arrangements to stay at the Hyatt by SeaWorld and off we went to spend the day with Shamu.
We arrived back home last night feeling much, much better. I still believe very much in what OHI's philosophies; however, I need to research a much gentler approach for those of us that are weak in physical endurance. I would like to extend to Lee and Natalie that Nick and I have a much greater appreciation and admiration for them completing TWO weeks at OHI. Seriously, that is amazing and I stand in awe!
Here's a few pictures of our great escape:
Sunday, May 25, 2008
Another intense race!
So I entered another dirt bike race and ended up getting 9th. I will take top ten any day for now so I was very pleased. I am slowly progressing and am faster every race.
I didn't get hurt at all in this race like I did last race. (I messed up my hand pretty good last race). This time in my first heat another racer hit a jump right next to me and his front tire ended up landing on my shoulder, then hitting my hand. We both stayed on our bikes which is crazy, and all I had was some scratches on my hand. Didn't even really hurt me. It was weird and scary at the same time. But when this happened during the race, I thought to myself at first, "Did that really just happen?!". Then my competitive attitude kicked in instantly and I thought to myself, "Game on! Go Nick go!" Ha it was fun. After the race I asked my Mom and Lee if they saw me almost get smashed, and they said they didn't. What were they watching?! I am the only racer with a tail light, and its dark! But my friends family saw it and they gave me sympathy so it was all good.
Well until next race!
-Nick
Friday, May 23, 2008
Country Music Marathon - Set Your Calendars!
Nick's step-dad, Lee Brower, is an entrepreneurial coach with Strategic Coach out of Chicago and Salt Lake City. His groups have all been following Nick's journey and have been extraordinarily supportive. In fact, a few participants (Barry & Barbara Bumgarner & Phil Cavender) have proposed the following idea and formed it into a reality.
On Saturday, April 25th, 2009, the Country Music marathon and 1/2 marathon is being held in Nashville, Tennessee. (Please click on this link for more information - http://www.cmmarathon.com/home.html). It is our intent to participate in this event in order to raise money and awareness for childhood cancer under the banner of "Nick's Warriors". We are inviting every single person we know.
Registration information (t-shirts, too!), charity selection, fund raising strategies, etc. will follow shortly. This posting is just to ask you to save the date. We have 11 months to train! To keep this in perspective, I would rather be slowly tortured and face death than consider running a marathon; I don't think I would even ride a bike for 26 miles let alone run 26 miles. My daughters whole-heartedly support this viewpoint. In reflection, Nick has faced death and endured torture so I guess it's time to suck it up and run. At least I will have Carly & Kelsey to whine with me.
Also, Nick and I are going to be visiting Optimum Health in San Diego for a week beginning June 1st. Basically, it is to detox his body of any remaining chemo so all the nutrition we are pumping into his body can be absorbed at "optimum" levels. Never in 1,000,000 years did I think Nick would take me up on my offer to go with him as a supportive mother. Dang it! We start off with a 3-day juice fast followed up with a vegan diet for the rest of the week. Let's not forget the colonics! Joy. I do believe my days of donuts and coffee are gone (or will be gone - I still have until May 31st...).
Next posting I'll include a current picture of Nick with HAIR!
Love Lori
On Saturday, April 25th, 2009, the Country Music marathon and 1/2 marathon is being held in Nashville, Tennessee. (Please click on this link for more information - http://www.cmmarathon.com/home.html). It is our intent to participate in this event in order to raise money and awareness for childhood cancer under the banner of "Nick's Warriors". We are inviting every single person we know.
Registration information (t-shirts, too!), charity selection, fund raising strategies, etc. will follow shortly. This posting is just to ask you to save the date. We have 11 months to train! To keep this in perspective, I would rather be slowly tortured and face death than consider running a marathon; I don't think I would even ride a bike for 26 miles let alone run 26 miles. My daughters whole-heartedly support this viewpoint. In reflection, Nick has faced death and endured torture so I guess it's time to suck it up and run. At least I will have Carly & Kelsey to whine with me.
Also, Nick and I are going to be visiting Optimum Health in San Diego for a week beginning June 1st. Basically, it is to detox his body of any remaining chemo so all the nutrition we are pumping into his body can be absorbed at "optimum" levels. Never in 1,000,000 years did I think Nick would take me up on my offer to go with him as a supportive mother. Dang it! We start off with a 3-day juice fast followed up with a vegan diet for the rest of the week. Let's not forget the colonics! Joy. I do believe my days of donuts and coffee are gone (or will be gone - I still have until May 31st...).
Next posting I'll include a current picture of Nick with HAIR!
Love Lori
Thursday, May 22, 2008
Please say a prayer for...
To those of you who have prayed for Nick, would you be willing to continue your prayers for our extended "rhabdo" family? The past few weeks have been particularly devestating for three families: Kiersten, age 23, Joshua, age 21 and Jordan, age 26 have all passed on to be with our Heavenly Father. The families are incredibly strong in their faith, yet their hearts are broken. I have witnessed the power of prayer from all of you and it would be a personal blessing to me if you would include these families in your prayers for peace and comfort.
Thank you,
Lori
Thank you,
Lori
Tuesday, May 13, 2008
I'ts ok to say "REMISSION"!
Hi everyone:
Nick had his first post-op MRI done last Friday - they are normal! We also had a follow-up appointment with Dr. Chen and she is thrilled with Nick's response to treatment. She was down-right giddy.
In the world of rhabdo, we are hesitant to use the word "remission" as the term implies the cancer is eradicated, when in reality, we really only can confirm the cancer is gone from the original tumor site. The term "no evidence of disease" implies a more accurate status. However, Dr. Chen said to go right ahead and say "REMISSION". So, ok... remission it is! My goodness that sounds delightful!
I recently wrote an article about childhood cancer and shared it with our company, Quadrant Living Exerience, LLC. They were kind enough to allow me to use it in their May newsletter. If you would be interested, here is the link:
http://quadrantliving.com/documents/Newsletter0805.pdf
Again, the support has been amazing and unbelievably powerful.
With love,
Lori
Nick had his first post-op MRI done last Friday - they are normal! We also had a follow-up appointment with Dr. Chen and she is thrilled with Nick's response to treatment. She was down-right giddy.
In the world of rhabdo, we are hesitant to use the word "remission" as the term implies the cancer is eradicated, when in reality, we really only can confirm the cancer is gone from the original tumor site. The term "no evidence of disease" implies a more accurate status. However, Dr. Chen said to go right ahead and say "REMISSION". So, ok... remission it is! My goodness that sounds delightful!
I recently wrote an article about childhood cancer and shared it with our company, Quadrant Living Exerience, LLC. They were kind enough to allow me to use it in their May newsletter. If you would be interested, here is the link:
http://quadrantliving.com/documents/Newsletter0805.pdf
Again, the support has been amazing and unbelievably powerful.
With love,
Lori
Wednesday, April 30, 2008
The Races
So last weekend I had my first dirt bike race ever. It was definitely a cool experience and I have not felt all that adrenaline run through my body in a long time. I was able to get my number 212 which was cool even though my numbers were electrical tape. HA I will get some real numbers soon. My dirt bike is mainly designed for trail riding and not racing. So it was funny to be the only rider out there with a headlight and taillight. Even with the extra weight and headlight I finished 15 out of 25 on my final heat and 17th overall. So I was satisfied with my first race and have another one this friday.
Tuesday, April 22, 2008
This past week and the week ahead
So this past week has consisted of hanging out with friends, drive ins, job applications, and school applications. What I am really excited for is my first ever dirt bike race on Saturday. I practiced last saturday and ended up hurting my knee and ankle in the process (I have the bruises to prove it). But I should still be good to go on Saturday, so I am really excited. I am hoping that number 212 isn't taken because thats the number I want. It would stand for 2 surgeries and 12 chemos. Together it makes number 212. My dad said he will be there for the race so he will be able to film, and if so I will be able to post a little video of how it went. I don't plan on doing too good but not too bad either. So wish me luck!
Oh ya! I will also be attending game 3 of the Jazz vs. the Rockets at the Energy Solutions Arena on thursday. My buddy AJ was so kind to invite me. It is going to be an awesome game!
Lastly, I would like everyone to know (especially Jay), that the Penguins were the only team to win the first round 4-0. My main man Sidney Crosby is back and scoring goals.
Well thats all I have for now. Talk to you soon.
BYE
love
Nick
Thursday, April 17, 2008
It feels like we won the lottery!
Dad Here,
It was the best possible news we could have asked for. When ever I hear any negative news I find myself ending the conversation with "That's terrible but I just learned that my son is cancer free"( Geico twist). Nick plans on racing competitive motocross this summer and I'm asking myself why did I ever agree to get him a dirt bike. With the high probability of injury I find some humor in knowing that he may kill himself on that bike but at least he was cancer free! Nick will require scans every three months and after 2.5 years the chance of a relapse drops considerably. Nick plans on working at Discount Tire this summer and starting school at the University of Utah in the fall. I need to also thank Blue Cross BlueShield and University Health Care Billing. I don't know how I would have been able to sort through the billing maze without their help. I'm so greatful to have excellent insurance.
It was the best possible news we could have asked for. When ever I hear any negative news I find myself ending the conversation with "That's terrible but I just learned that my son is cancer free"( Geico twist). Nick plans on racing competitive motocross this summer and I'm asking myself why did I ever agree to get him a dirt bike. With the high probability of injury I find some humor in knowing that he may kill himself on that bike but at least he was cancer free! Nick will require scans every three months and after 2.5 years the chance of a relapse drops considerably. Nick plans on working at Discount Tire this summer and starting school at the University of Utah in the fall. I need to also thank Blue Cross BlueShield and University Health Care Billing. I don't know how I would have been able to sort through the billing maze without their help. I'm so greatful to have excellent insurance.
Tuesday, April 15, 2008
Its official!
So I got the news today around 11 a.m. I am officially CANCER FREE! The docs said they could not find one cancer cell on the slides. It incredible!
My mom called me to give me the news, but before she did she told me to stand next to my step-dad Lee. So I did, and then she broke down and told me the great news. I simply replied with, "Really. K do you wanna talk to Lee now?". Ha, I know its sounds rude and weird but I believe I replied like that because I already knew what the results were going to be. I will admit however, 15 minutes later I started to realize the whole situation and that my year of fighting was finally over. Then it kinda hit me, but I DIDN'T cry.
So after the news I called my dad and family to let them hear the good news. Everybody was so happy and relieved. It was good to hear their voices full with love and gratitude.
What I plan to do next will consist of riding my dirt bike, volunteering at Primary Children's, finding a job, preparing for college, and if I have time coaching hockey.
I am excited to finally get back on track with life and grow some sweet hair. My main goal is to be an example to other and future people who will be diagnosed with the same cancer as I was, to let them know its very possible to fight this disease with modern medicine, attitude, and perseverance.
Lastly I wanna thank all my doctors: Dr. Chen, Dr. Albritton, Dr. Hitchcock, Dr. Sharma, and also Dr. Rhabar who did a wonderful job with my last surgery in Boston. Also the nurses at Huntsman were the best and were always fun to talk to. And the biggest help of them all was everybody reading now who have prayed and stayed with me through this long fight. You have been the reason for my great attitude and reason to keep pushing. I could not have done it without all of you. I know this for sure. And my GM's (godmothers) have been there for every round of treatment to keep smiles on my face as well as other patients.
Thanks Everyone!
Now lets plan on making plans of fun and adventure!
Monday, April 14, 2008
No news yet
We were to have heard from Boston today about the results of the pathology reports. As of 3:00 Eastern time, Dr. Rahbar was on the phone with the lab to see what the status is, other than the computer not indicating any lab postings. Nothing yet.
Hopefully tomorrow. In the meantime, Nick is enjoying another round of golf in our brief bout of beautiful weather. His scar is healing incredibly well, other than only being able to flare one nostril.
More soon,
Lori
Hopefully tomorrow. In the meantime, Nick is enjoying another round of golf in our brief bout of beautiful weather. His scar is healing incredibly well, other than only being able to flare one nostril.
More soon,
Lori
Sunday, April 6, 2008
Nick's Dad Here,
As parents we want our children to become strong, independent and well rounded adults. However, during this process of becoming adults, as his father I seem to be going through a bit of separation anxiety which has been magnified by the cancer. Rolls have been reversed and Nick has been a source of strength and support from the very first day we learned of the tumor.
Nick and I visited Fenway Park today, home of the 2007 World Series Champions and the fabled Green Monster. Nick has handled this monster/crisis with confidence and determination and I am so proud of this special young man. Nick's journey has been filled with hopes, dreams, challenges and setbacks and he continues to address them head-on.
With Admiration,
Todd
As parents we want our children to become strong, independent and well rounded adults. However, during this process of becoming adults, as his father I seem to be going through a bit of separation anxiety which has been magnified by the cancer. Rolls have been reversed and Nick has been a source of strength and support from the very first day we learned of the tumor.
Nick and I visited Fenway Park today, home of the 2007 World Series Champions and the fabled Green Monster. Nick has handled this monster/crisis with confidence and determination and I am so proud of this special young man. Nick's journey has been filled with hopes, dreams, challenges and setbacks and he continues to address them head-on.
With Admiration,
Todd
Saturday, April 5, 2008
Friday, April 4, 2008
Oh yeah, forgot to tell you about...
Now that I'm well-rested and fed (ahhh....), I wanted to share a few things from yesterday:
When Nick was first wheeled into the recovery room, we were not alone - there were about 8 other beds with patients also waking up from surgery just in our little "pod". Right next to Nick - with the curtain OPEN - was a little boy no older than three that was just beginning to regain consciousness. Something happened and he began to scream in a very throaty and raspy voice. Soon the parents were holding him still as two nurses worked on him. The screaming continued and I sat in my chair, heart breaking to see the wrenching sorrow in the parents, and I couldn't hold back my tears. Soon, thankfully, he was able to be held by his mom and he immediately settled down. Even Nick said in his semi-state of awareness, "aw, that is horrible!" Within minutes, the little boy was snuggled up contentedly with his mom and all was right again. I held Nick's hand and gave thanks that we have not had to endure this particular journey.
We were talking with Nick's recovery nurse and she told us the Children's Hospital has about 100 surgeries a DAY; 23 operating rooms and 5 procedure rooms. Absolutely unbelievable!
Nick's is in a semi-private room and shares it with another young man (18 years old, I think). Lee and I spoke with him and his mom late last night - they are from Atlanta. This young man has an extremely deformed face; he has obviously had many, many surgeries. They confirmed this by stating they have been coming back to Children's Hospital for over 18 years! Their eyes were kind and strong - not a hint of bitterness or weariness. We are just rookies with only 1 year under our belt. We were humbled by their strength and again gave thanks for the precious life we have.
Nick looks terrific today and I took a picture of him in the "play room" where we played a very competitive game of gin. Forgot the camera at the hospital tonight so I'll have to post tomorrow. Nick is expected to be checked out by 11:00 a.m. and we changed our flights to come home on Wednesday (Mom 2; Delta 1). Amazing!
With lots of love,
Lori
When Nick was first wheeled into the recovery room, we were not alone - there were about 8 other beds with patients also waking up from surgery just in our little "pod". Right next to Nick - with the curtain OPEN - was a little boy no older than three that was just beginning to regain consciousness. Something happened and he began to scream in a very throaty and raspy voice. Soon the parents were holding him still as two nurses worked on him. The screaming continued and I sat in my chair, heart breaking to see the wrenching sorrow in the parents, and I couldn't hold back my tears. Soon, thankfully, he was able to be held by his mom and he immediately settled down. Even Nick said in his semi-state of awareness, "aw, that is horrible!" Within minutes, the little boy was snuggled up contentedly with his mom and all was right again. I held Nick's hand and gave thanks that we have not had to endure this particular journey.
We were talking with Nick's recovery nurse and she told us the Children's Hospital has about 100 surgeries a DAY; 23 operating rooms and 5 procedure rooms. Absolutely unbelievable!
Nick's is in a semi-private room and shares it with another young man (18 years old, I think). Lee and I spoke with him and his mom late last night - they are from Atlanta. This young man has an extremely deformed face; he has obviously had many, many surgeries. They confirmed this by stating they have been coming back to Children's Hospital for over 18 years! Their eyes were kind and strong - not a hint of bitterness or weariness. We are just rookies with only 1 year under our belt. We were humbled by their strength and again gave thanks for the precious life we have.
Nick looks terrific today and I took a picture of him in the "play room" where we played a very competitive game of gin. Forgot the camera at the hospital tonight so I'll have to post tomorrow. Nick is expected to be checked out by 11:00 a.m. and we changed our flights to come home on Wednesday (Mom 2; Delta 1). Amazing!
With lots of love,
Lori
Thursday, April 3, 2008
Boston
Lee here, Nick's Step Dad...Nick is a stud. Lori and Nick were up at 5:30 this morning after a mostly sleepless night to be at the hospital at 6:30. Unfortunately, they ended up waiting because there weren't any beds in Intensive Care. The hospital was even considering postponing surgery! Bummer. Finally about 9 a.m. they came to take him away. That was o.k. with me because I just arrived from the airport and I was very happy to give him some bones before he kissed his mom. The last view of him as they rolled him off to surgery was with a big smile, a determined look and a "bring it on" attitude.
I have to say that everyone affiliated with the hospital has been exceptional- the doctors, nurses and staff. They keep it pleasant and are very professional. About every 90 minutes they would give us an update. The actual surgery began at 10:15 a.m. and every report was positive. They made an incision from the center of his upper lip up to the nose and then around the right side of his nose up to his eye then along the lower eyelid to the corner of his eye. The optometrist stopped by to let us know that his eye was just fine and she had inserted a small stint (tube) into his right tear duct that drains into his sinus to keep that area clear while it heals. I am sure Nick will be excited when they take it out in about six months.
Five hours to the minute, the surgeon, Dr. Rahbar, shows up to give us his report. I have to say he appeared to be very cautiosly optimistic. He said they took out a bunch of dead gunk and they actually created some windows through the cheek bone so they could clean things out and gather some tissue for biopsies. He also scraped several of the bones to get bone samples for biopsy as well. He said that because of the cancer and/or the radiation there was significant deterioration. The good news was that every thing was consistent. There were no particular areas that differed from other areas. He did say that could be really good or really bad. But, both Lori and I felt that he considered that a very good sign.
He actually remarked that Nick was a good healer and he felt he could be released perhaps as early as this coming Saturday- at least 3-4 days sooner than predicted. He would like to have a post-op on Tuesday and assuming Lori can win the battle with Delta Airlines, and Nick feels up to it, they could actually come home the middle of next week.
Of course we are anxious to see the lab results, but we will probably have to wait at least 7-10 days for the results. Keep your fingeres crossed. When we finally got to see Nick- we certainly expected to see more outside damage. Actually, we were surprised to see how good Nick looks. He was quite groggy- but quickly recovered and they sent him directly to a room without even having to go to ICU. (They had told us earlier he would be in ICU over night).
We knew Nick was coming around when he suddenly asked, "What happened to my underwear? I know I had underwear on when I went into surgery- so who took them off?"
It is obvious to all of us that the power of prayer and positive intentions continues to play a very influential role in Nick's progress. His positive attitude his amplified from the love and support of so many of you. We all feel the strength that comes from literally hundereds of prayers offered in his behalf. For that we are enormously and forever grateful.
Lori is here now and I am sure has some good words and photos to post.
Good night!
Nick - at our pre-op appointment - 6:30 a.m. EASTERN time!
The "rock star" meds are starting to kick in...
4 hours after surgery...
Nothing much more to add except to thank Lee for being here with us. What a day! What a great kid Nick is!
With love,
Lori
I have to say that everyone affiliated with the hospital has been exceptional- the doctors, nurses and staff. They keep it pleasant and are very professional. About every 90 minutes they would give us an update. The actual surgery began at 10:15 a.m. and every report was positive. They made an incision from the center of his upper lip up to the nose and then around the right side of his nose up to his eye then along the lower eyelid to the corner of his eye. The optometrist stopped by to let us know that his eye was just fine and she had inserted a small stint (tube) into his right tear duct that drains into his sinus to keep that area clear while it heals. I am sure Nick will be excited when they take it out in about six months.
Five hours to the minute, the surgeon, Dr. Rahbar, shows up to give us his report. I have to say he appeared to be very cautiosly optimistic. He said they took out a bunch of dead gunk and they actually created some windows through the cheek bone so they could clean things out and gather some tissue for biopsies. He also scraped several of the bones to get bone samples for biopsy as well. He said that because of the cancer and/or the radiation there was significant deterioration. The good news was that every thing was consistent. There were no particular areas that differed from other areas. He did say that could be really good or really bad. But, both Lori and I felt that he considered that a very good sign.
He actually remarked that Nick was a good healer and he felt he could be released perhaps as early as this coming Saturday- at least 3-4 days sooner than predicted. He would like to have a post-op on Tuesday and assuming Lori can win the battle with Delta Airlines, and Nick feels up to it, they could actually come home the middle of next week.
Of course we are anxious to see the lab results, but we will probably have to wait at least 7-10 days for the results. Keep your fingeres crossed. When we finally got to see Nick- we certainly expected to see more outside damage. Actually, we were surprised to see how good Nick looks. He was quite groggy- but quickly recovered and they sent him directly to a room without even having to go to ICU. (They had told us earlier he would be in ICU over night).
We knew Nick was coming around when he suddenly asked, "What happened to my underwear? I know I had underwear on when I went into surgery- so who took them off?"
It is obvious to all of us that the power of prayer and positive intentions continues to play a very influential role in Nick's progress. His positive attitude his amplified from the love and support of so many of you. We all feel the strength that comes from literally hundereds of prayers offered in his behalf. For that we are enormously and forever grateful.
Lori is here now and I am sure has some good words and photos to post.
Good night!
Nick - at our pre-op appointment - 6:30 a.m. EASTERN time!
The "rock star" meds are starting to kick in...
4 hours after surgery...
Nothing much more to add except to thank Lee for being here with us. What a day! What a great kid Nick is!
With love,
Lori
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