Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Lori, Thanks for sharing! I love baseball, as my 13 y.o son is very involved with the sport. He was on a great team that kept us all very busy this past Spring and summer. He plays in a different league than Little League, but we always try to catch the games on ESPN. I'll watch softball tonight and hope they show your friend and talk about his CML. Do you know if he is on Gleevec? We are following the Mercer Island, Washington team for the boys since they are representing our State. Maybe they'll end up facing your home town boys! What State are you from? Glad to hear your Dad is feeling good. Please remind me how long he has had CML, and his story. Sincerely, ________________________________ From: perryandlori <perryandlori@...> Sent: Wednesday, August 19, 2009 4:25:52 AM Subject: [ ] WRALL parent with CML Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Hey , We are from Warner Robins Georgia. We are going to make a sign that says " We're Back " . Warner Robins won in 2007. My uncle was the coach then. I have a boy too that plays ball. He is 11. Ricky is on Gleevec and has done well. He was one sick man for awhile though. My dad was diagnosed Nov. 2008 and started Gleevec. He had really rough side effects and then in March 2009 had a heart cath that ended up dissecting the main artery. He coded 3 times before they could get him on the table. After recovery, back to Gleevec and side effects. It has been a balancing act for him. That is the short of the long. The lower dosage has worked for him so far. Lori Sent from my Verizon Wireless BlackBerry [ ] WRALL parent with CML Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Hi Lori, Thanks for the great story, even if I couldn't understand baseball to save my life, a dive buddy tried to explain on long carpools but that failed. Gleevec is really a miracle when it works, I went last week-end on an abalone hunting trip, next week-end climbing in Tuolumne, scuba the week-after, and I am getting back at long distance swimming. Not really what the dr and I were expecting when I was dxed. Marcos. On Wed, Aug 19, 2009 at 4:25 AM, perryandlori<perryandlori@...> wrote: > > > Greetings Everyone, > Just wanted to inspire you a little and brag a little. If you watch ESPN > Little League World Series girl's softball you will see a girl there named > Kaylee Albritton. I believe she will pitching tonight. We have been friends > with this family forever and our girls have grown up together. Her dad was > diagnosed with CML two years ago. He has been out in Oregon for two weeks > watching the games. Last night ESPN caught him talking with two cell phones, > one in each ear. He was having a blast. So life goes on. I remember when he > was diagnosed and how devastated we all were. A dad with 4 young children. > He lives pretty much a normal life chasing his kids all over the country. > Watch for him tonight. If she pitches he will probably have some coverage. > Wouldn't it be awsome if he said something about having CML and being around > to share in this with his daughter. > > On my bragging note, we are heading out for port, PA for the boys > World Series Little League. So our town, Warner Robins, has two teams trying > for the win. I will wave to you all out there. We will be playing this > Friday, Saturday, and Monday. You want know what I look like but I will > still wave > > My dad is doing great since he got back from MD . He is feeling as > good as he has felt in a long time. He is at 200 mg of Gleevec. That really > helped eliminate side effects but is still keeping the CML in check. Will > update on that more later. > > Lots of love, > Lori > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 468 9926 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 GREAT GAME!! WHEN I SWITCHED OVER TO SEE WHAT THE INDIANS WERE DOING, BESIDES LOSING!, I COULD NOT GET ESPN BACK ON. BUT THE SCORE WAS 14/2, NO BRAINER THERE, GREAT GAME.. BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) 02/13/09 - XL trial ended due to side effects 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz From: perryandlori <perryandlori@...> Subject: [ ] WRALL parent with CML Date: Wednesday, August 19, 2009, 7:25 AM Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Well we are driving right now so I have not seen anything. We are still 7 hours away from port PA. Sounds like Ricky's daughter really brought it on. I guess I will catch the highlights. Proud of all the girls and so thankful for strides in medicine that gives us more time to make memories. Thanks for the score. Now for the boys. If you enjoy baseball you will enjoy it no matter who is playing. Just for the love of the game and youth. Sent from my Verizon Wireless BlackBerry [ ] WRALL parent with CML Date: Wednesday, August 19, 2009, 7:25 AM Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 DON'T TAKE MY SCORE AS GOSPEL, I COULD NOT GET ESPN BACK ON, RATHER SOCCOR WAS ON , SO i'M NOT SURE 14/2 WAS THE FINAL, I HOPE SO. AND THANKS, IT WAS A LOT MORE FUN THAN WATCHING THE INDIANS, WHAT TIME DO THE BOYS PLAY, AND NO I'M ONE OF THE FEW THAT DON'T KNOW WHAT YOU LOOK LIKE, ARE YOU IN THE PHOTO SECTION? GOOD LUCK, I HOPE YOUR TEAM WINS, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) 02/13/09 - XL trial ended due to side effects 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz From: perryandlori <perryandlori@...> Subject: [ ] WRALL parent with CML Date: Wednesday, August 19, 2009, 7:25 AM Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 That's so awesome Marcos! You are my inspiration while I'm on my treadmill. I'm only just beginning to try to get fit, so you are in my mind along the way! It's hard to feel like exercising when I'm so tired(and anemic) but I must admit, even 20 minutes a day makes me feel better. ________________________________ From: Marcos Perreau Guimaraes <montereyunderwater@...> Sent: Wednesday, August 19, 2009 1:47:00 PM Subject: Re: [ ] WRALL parent with CML Hi Lori, Thanks for the great story, even if I couldn't understand baseball to save my life, a dive buddy tried to explain on long carpools but that failed. Gleevec is really a miracle when it works, I went last week-end on an abalone hunting trip, next week-end climbing in Tuolumne, scuba the week-after, and I am getting back at long distance swimming. Not really what the dr and I were expecting when I was dxed. Marcos. On Wed, Aug 19, 2009 at 4:25 AM, perryandlori<perryandlori> wrote: > > > Greetings Everyone, > Just wanted to inspire you a little and brag a little. If you watch ESPN > Little League World Series girl's softball you will see a girl there named > Kaylee Albritton. I believe she will pitching tonight. We have been friends > with this family forever and our girls have grown up together. Her dad was > diagnosed with CML two years ago. He has been out in Oregon for two weeks > watching the games. Last night ESPN caught him talking with two cell phones, > one in each ear. He was having a blast. So life goes on. I remember when he > was diagnosed and how devastated we all were. A dad with 4 young children. > He lives pretty much a normal life chasing his kids all over the country. > Watch for him tonight. If she pitches he will probably have some coverage. > Wouldn't it be awsome if he said something about having CML and being around > to share in this with his daughter. > > On my bragging note, we are heading out for port, PA for the boys > World Series Little League. So our town, Warner Robins, has two teams trying > for the win. I will wave to you all out there. We will be playing this > Friday, Saturday, and Monday. You want know what I look like but I will > still wave > > My dad is doing great since he got back from MD .. He is feeling as > good as he has felt in a long time. He is at 200 mg of Gleevec. That really > helped eliminate side effects but is still keeping the CML in check. Will > update on that more later. > > Lots of love, > Lori > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 468 9926 (cell) marcospgstanford (DOT) edu montereyunderwater@ gmail.com www.stanford. edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hi Lori- I'm from port and grew up going to the games. I live in Ca now, but usually I am in town during the series. This year I have been chasing some symptoms and crazy labs so I didn't go home. Best of luck to your team. Stop into Franco's for some good garlic bread and fried pickles. If you go to the Bull Frog Brewery please be sure to take a look at the mural on the walls next to it by the tea room, it tells the local history in pictures and will probably be there painting. I love my little town but is suffering some big city pains. Stay safe and Go WR!!!! Chi From: perryandlori@... <perryandlori@...> Subject: Re: [ ] WRALL parent with CML Date: Wednesday, August 19, 2009, 1:24 PM Hey , We are from Warner Robins Georgia. We are going to make a sign that says " We're Back " . Warner Robins won in 2007. My uncle was the coach then. I have a boy too that plays ball. He is 11. Ricky is on Gleevec and has done well. He was one sick man for awhile though. My dad was diagnosed Nov. 2008 and started Gleevec. He had really rough side effects and then in March 2009 had a heart cath that ended up dissecting the main artery. He coded 3 times before they could get him on the table. After recovery, back to Gleevec and side effects. It has been a balancing act for him. That is the short of the long. The lower dosage has worked for him so far. Lori Sent from my Verizon Wireless BlackBerry [ ] WRALL parent with CML Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hey Bobby. So glad you had something to watch and I get to hear from all of you. Okay, I am on my blackberry so I am going to shorthand all of this. We r stillllll driving in rain now. I'm not not driving of course. Hubby is. Boys play 5:00 on fri and 3:00 on sat and 4:00 on monday. We r not the only ones playing. Other teams start playing at 1:00 on Friday. We r going to make a sign that says " We're Back! WRALL " . We have 4 children. I will b the wild lookin woman hangin on to the wild lookin 3 year old. Sent from my Verizon Wireless BlackBerry [ ] WRALL parent with CML Date: Wednesday, August 19, 2009, 7:25 AM Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Awsome Chi. I just told hubby what u said. We plan to go to the places u suggested. Hope u get symptoms and labs straight. So hard to know what is cml, what is caused by cml, and what has nothing to do with cml. Wish u could be home. Lori Sent from my Verizon Wireless BlackBerry [ ] WRALL parent with CML Greetings Everyone, Just wanted to inspire you a little and brag a little. If you watch ESPN Little League World Series girl's softball you will see a girl there named Kaylee Albritton. I believe she will pitching tonight. We have been friends with this family forever and our girls have grown up together. Her dad was diagnosed with CML two years ago. He has been out in Oregon for two weeks watching the games. Last night ESPN caught him talking with two cell phones, one in each ear. He was having a blast. So life goes on. I remember when he was diagnosed and how devastated we all were. A dad with 4 young children. He lives pretty much a normal life chasing his kids all over the country. Watch for him tonight. If she pitches he will probably have some coverage. Wouldn't it be awsome if he said something about having CML and being around to share in this with his daughter. On my bragging note, we are heading out for port, PA for the boys World Series Little League. So our town, Warner Robins, has two teams trying for the win. I will wave to you all out there. We will be playing this Friday, Saturday, and Monday. You want know what I look like but I will still wave My dad is doing great since he got back from MD . He is feeling as good as he has felt in a long time. He is at 200 mg of Gleevec. That really helped eliminate side effects but is still keeping the CML in check. Will update on that more later. Lots of love, Lori Quote Link to comment Share on other sites More sharing options...
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