It's been a good week. Ricky continues to feel well, and we had a great school vacation week off, visiting and being visited.
He's been going to school this week, looks well, and is enjoying the warm weather. His platelets were 152K last week, the highest they have been in months. He's been able to get all his medicines, and also something for the lingering cold he's had as well. We've had just a couple of minor TIAs and no other medical issues.
Bill
Tuesday, April 28, 2009
Friday, April 17, 2009
A quiet week.....that's a good thing.
Ricky had a good week, he made it to school everyday, including going to the student-teacher softball game Thursday evening. He's had very few TIAs or mini-strokes, almost no headaches or stomach problems. His appetite is still good - he had a large plate of bacon and corn for breakfast this morning.
Overall, he seems to finally be getting over a nagging cold, and the change in medication seem to be what he needed. He has more of his energy back and he's running around the house. The warmer Spring weather is helping us to see less TIAs, and be more active outside, which is good for all of us.
His blood counts were taken on Wednesday and were good, with 88K platelets, so we should be able to continue the Avastin next Wednesday. His other numbers were all stable.
Thanks for all your wonderful thoughts and prayers!
Overall, he seems to finally be getting over a nagging cold, and the change in medication seem to be what he needed. He has more of his energy back and he's running around the house. The warmer Spring weather is helping us to see less TIAs, and be more active outside, which is good for all of us.
His blood counts were taken on Wednesday and were good, with 88K platelets, so we should be able to continue the Avastin next Wednesday. His other numbers were all stable.
Thanks for all your wonderful thoughts and prayers!
Saturday, April 11, 2009
Good Friday was very good
It was a long week, but god gave us a sunny Good Friday and Ricky spent the day with no signs of sickness all day. He was energetic, witty and full of himself, and he ate an amazing amount of food, starting with tacos for breakfast. His brother, Ricky and I went to lunch in Marshfield, overlooking the ocean and Ricky ate a entire blue cheese wedge salad and calamari. We went for a short hike in the woods and Ricky was actually running with Michael. Later we walked the beach, it was a glorious day. For that day, we all forgot the problems.
Wednesday we were at Dana Farber all day, Rick wasn't feeling well and we were glad to get him back for a checkup. His platelets were good at 117K, but he was anemic, so he had a red blood cell transfusion. We also reduced the dose of one of the drugs, which may have helped his overall well being. We had a couple of meetings with the doctors, as we prepare to move to the next phase of his illness, it was a sad day for us, knowing that we must prepare for what may follow.
Thanks for all your notes, prayers and kind thoughts. I know we had the angels with us yesterday. Today, he is on his way to his grand parents in Albany for Easter. God bless.
Wednesday we were at Dana Farber all day, Rick wasn't feeling well and we were glad to get him back for a checkup. His platelets were good at 117K, but he was anemic, so he had a red blood cell transfusion. We also reduced the dose of one of the drugs, which may have helped his overall well being. We had a couple of meetings with the doctors, as we prepare to move to the next phase of his illness, it was a sad day for us, knowing that we must prepare for what may follow.
Thanks for all your notes, prayers and kind thoughts. I know we had the angels with us yesterday. Today, he is on his way to his grand parents in Albany for Easter. God bless.
Friday, April 3, 2009
Mark Porter's letter of solicitation
Enjoy the Journey of life
Tuesday, March 24, 2009
Dear Friends and Family:
This is the fourth time that I have written a letter of solicitation. For those who know me all too well, you were expecting this and I thank you for opening this up once again. For those of you that are receiving this for the first time, I want to thank you in advance for hearing me out.
Each year I write this letter it is for all the previous reasons but in turn each year takes on new importance. We have achieved our previous goals, but since last year I have personally lost both friends and family to cancer. Here we are again, starting at the bottom. We have a whole new set of reasons and a whole new list of people that we want to honor and help. In reality we are in a constant battle with this fight that never stops. It may not be at your door step, but it is definitely knocking on someone else’s door, or God forbid, it may affect you in the future. All of you have been a tremendous help in this battle -- with both financial and mental inspiration. And for that I thank you.
As many of you know, March 1, 2005 was the day that I was introduced to cancer on a personal level. I was diagnosed with large cell type A non Hodgkin’s lymphoma. While recovering I realized that someone else had provided me with the care that would ultimately get me back on the road of recovery -- hopefully for a long and healthy life with my family and friends.
Each year the hospital matches me with a patient partner which is great form of inspiration for me. This year my patient partner’s name is Ricky Hoffman. Ricky turned eleven years old on December 9th. My previous three partners were in various stages of recovery which was inspirational and uplifting. Bearing this in mind when I made the initial call to Ricky’s parents to introduce myself, my mind set was that “all was rosy”. Like the previous three times, I was prepared to meet an eleven year old boy on his way to full recovery. But when I talked to his mother I almost fainted. She told me that Ricky had a rare form of brain cancer that was terminal. I was speechless. For those of you that know me, this is a rare occurrence. It took me almost two weeks to call them back. It was a little bit easier for me then as I was more prepared for the conversation, but as you can imagine Ricky and his family’s situation had not changed. They were blessed with another Christmas and New Year together. Presently Ricky has again been diagnosed with cancer and his battle starts all over and like before both Ricky and his parents are thankful that Dana farber are in their corner doing all that they can to make sure the Ricky has the best care possible and that they as parents make many fond memories that will last them for many years to come of the strength and courage of their son, and the dedication of Dana Farber
I think of Ricky while I am running in the rain, snow, cold and even when I think of the long roads that are ahead of me. I feel genuinely privileged to be associated with such a strong and motivated young man. All my roads seem to be down hill in comparison to the up hill road that Ricky does every day with style and determination.
Last year was the first year that I ran for Dana Farber. It was truly an amazing experience from the start when all the Dana Farber runners first met. We exchanged stories -- both happy and sad which bonded us as a team of hope for the future. With every step from Hopkinton to Copley Square the spectators were like a human conveyor belt, urging us on. One particular instance that touched me was at the corner of Commonwealth Avenue and Walnut Street in Newton at the John Kelley statue. With the statue overlooking me, I was bitching and moaning about the hill ahead (the start of “Heartbreak Hill”). If you can imagine me running/walking in full blown conversation with myself convincing myself that not only was the hill ahead short, but basically flat. Then I noticed an older woman on the side egging me on. She was thanking me for running for Dana Farber and told me she was a cancer survivor. Thanks to Dana Farber she was able to stand there doing her part to help the cause that had saved her life by encouraging the runners up “Heartbreak Hill”. At that moment, this lady was the angel that I needed and she exemplified what an impact Dana Farber has had. This one small gesture was just one example of the experience that I had as a runner wearing the Dana Farber shirt. I firmly believe that the experience of the journey from start to finish is something that is different every year but nonetheless rewarding and inspirational -- and hopefully will continue for many years to come.
I have been dealing with cancer for over four years. I have learned to look at life much differently. I do not take life for granted any more being it was a gift to get the second chance. Life is a journey that we all take. Most do not see it as a journey but more like a trip with a destination. Like every trip, we want to get to our destination as fast as possible -- only to find out when we get there how much that we have missed on the trip. The beauty of a journey is the memories that we create, share or experience, while we are on it. It is those memories we share that touch the lives of those that we will leave when we reach the end of the journey.
My recovery was due to the hard work and dedication of past generations of Bostonians who both encouraged the doctors and researchers and helped them further their work with much needed funds. In keeping with this, I am writing once again to encourage you to give generously to the Dana Farber Cancer Institute of Boston so that others can benefit from the same kind of excellent care that I have experienced. As with any such journey there will be some good news and some bad news along the way. The good news is that in the last three years, we have raised approximately $90,000.00 together – a fantastic amount! The bad news is the economy and each previous year we have been able to beat our previous amount, with last year reaching over $30,000.00. Cancer unlike the economy does not get to have a good year. It is always the worst word that a doctor can say to his patient or the last word that a patient wants to hear. Due to your financial help and Dana Farber’s unending care and ground breaking research, these words have been more bearable for both the patient and their families to hear. Your contribution will help ensure that patients will continue to receive the best medical care possible and that cancer patients around the world will benefit from the groundbreaking research performed at Dana Farber everyday. Our hope is that one day, other families may not have to face the suffering and sadness that cancer patients and their families endure on a daily basis. By giving generously to support this amazing cause, we can truly help the families and patients that depend on Dana Farber to enjoy long and happy lives together.
To accomplish this, I am asking you to help me support the patient care and research missions of Dana Farber. With your contribution, you have the ability to improve the lives of many cancer patients and their families -- for generations of Bostonians.
Live life today being tomorrow may not come as planned.
On behalf of myself, my family and the many families that we don’t know,
Thanks’ for sharing my story
Thanks for all you inspiration
Lastly I thank you for your support.
With best regards,
Mark
Mark Porter
415 Belmont Street
Quincy, Massachusetts 02170
(617)-984-2666
jmpgc@aol.com
or my Boston Marathon site at
http://www.rundfmc.org/markp2009
Tuesday, March 24, 2009
Dear Friends and Family:
This is the fourth time that I have written a letter of solicitation. For those who know me all too well, you were expecting this and I thank you for opening this up once again. For those of you that are receiving this for the first time, I want to thank you in advance for hearing me out.
Each year I write this letter it is for all the previous reasons but in turn each year takes on new importance. We have achieved our previous goals, but since last year I have personally lost both friends and family to cancer. Here we are again, starting at the bottom. We have a whole new set of reasons and a whole new list of people that we want to honor and help. In reality we are in a constant battle with this fight that never stops. It may not be at your door step, but it is definitely knocking on someone else’s door, or God forbid, it may affect you in the future. All of you have been a tremendous help in this battle -- with both financial and mental inspiration. And for that I thank you.
As many of you know, March 1, 2005 was the day that I was introduced to cancer on a personal level. I was diagnosed with large cell type A non Hodgkin’s lymphoma. While recovering I realized that someone else had provided me with the care that would ultimately get me back on the road of recovery -- hopefully for a long and healthy life with my family and friends.
Each year the hospital matches me with a patient partner which is great form of inspiration for me. This year my patient partner’s name is Ricky Hoffman. Ricky turned eleven years old on December 9th. My previous three partners were in various stages of recovery which was inspirational and uplifting. Bearing this in mind when I made the initial call to Ricky’s parents to introduce myself, my mind set was that “all was rosy”. Like the previous three times, I was prepared to meet an eleven year old boy on his way to full recovery. But when I talked to his mother I almost fainted. She told me that Ricky had a rare form of brain cancer that was terminal. I was speechless. For those of you that know me, this is a rare occurrence. It took me almost two weeks to call them back. It was a little bit easier for me then as I was more prepared for the conversation, but as you can imagine Ricky and his family’s situation had not changed. They were blessed with another Christmas and New Year together. Presently Ricky has again been diagnosed with cancer and his battle starts all over and like before both Ricky and his parents are thankful that Dana farber are in their corner doing all that they can to make sure the Ricky has the best care possible and that they as parents make many fond memories that will last them for many years to come of the strength and courage of their son, and the dedication of Dana Farber
I think of Ricky while I am running in the rain, snow, cold and even when I think of the long roads that are ahead of me. I feel genuinely privileged to be associated with such a strong and motivated young man. All my roads seem to be down hill in comparison to the up hill road that Ricky does every day with style and determination.
Last year was the first year that I ran for Dana Farber. It was truly an amazing experience from the start when all the Dana Farber runners first met. We exchanged stories -- both happy and sad which bonded us as a team of hope for the future. With every step from Hopkinton to Copley Square the spectators were like a human conveyor belt, urging us on. One particular instance that touched me was at the corner of Commonwealth Avenue and Walnut Street in Newton at the John Kelley statue. With the statue overlooking me, I was bitching and moaning about the hill ahead (the start of “Heartbreak Hill”). If you can imagine me running/walking in full blown conversation with myself convincing myself that not only was the hill ahead short, but basically flat. Then I noticed an older woman on the side egging me on. She was thanking me for running for Dana Farber and told me she was a cancer survivor. Thanks to Dana Farber she was able to stand there doing her part to help the cause that had saved her life by encouraging the runners up “Heartbreak Hill”. At that moment, this lady was the angel that I needed and she exemplified what an impact Dana Farber has had. This one small gesture was just one example of the experience that I had as a runner wearing the Dana Farber shirt. I firmly believe that the experience of the journey from start to finish is something that is different every year but nonetheless rewarding and inspirational -- and hopefully will continue for many years to come.
I have been dealing with cancer for over four years. I have learned to look at life much differently. I do not take life for granted any more being it was a gift to get the second chance. Life is a journey that we all take. Most do not see it as a journey but more like a trip with a destination. Like every trip, we want to get to our destination as fast as possible -- only to find out when we get there how much that we have missed on the trip. The beauty of a journey is the memories that we create, share or experience, while we are on it. It is those memories we share that touch the lives of those that we will leave when we reach the end of the journey.
My recovery was due to the hard work and dedication of past generations of Bostonians who both encouraged the doctors and researchers and helped them further their work with much needed funds. In keeping with this, I am writing once again to encourage you to give generously to the Dana Farber Cancer Institute of Boston so that others can benefit from the same kind of excellent care that I have experienced. As with any such journey there will be some good news and some bad news along the way. The good news is that in the last three years, we have raised approximately $90,000.00 together – a fantastic amount! The bad news is the economy and each previous year we have been able to beat our previous amount, with last year reaching over $30,000.00. Cancer unlike the economy does not get to have a good year. It is always the worst word that a doctor can say to his patient or the last word that a patient wants to hear. Due to your financial help and Dana Farber’s unending care and ground breaking research, these words have been more bearable for both the patient and their families to hear. Your contribution will help ensure that patients will continue to receive the best medical care possible and that cancer patients around the world will benefit from the groundbreaking research performed at Dana Farber everyday. Our hope is that one day, other families may not have to face the suffering and sadness that cancer patients and their families endure on a daily basis. By giving generously to support this amazing cause, we can truly help the families and patients that depend on Dana Farber to enjoy long and happy lives together.
To accomplish this, I am asking you to help me support the patient care and research missions of Dana Farber. With your contribution, you have the ability to improve the lives of many cancer patients and their families -- for generations of Bostonians.
Live life today being tomorrow may not come as planned.
On behalf of myself, my family and the many families that we don’t know,
Thanks’ for sharing my story
Thanks for all you inspiration
Lastly I thank you for your support.
With best regards,
Mark
Mark Porter
415 Belmont Street
Quincy, Massachusetts 02170
(617)-984-2666
jmpgc@aol.com
or my Boston Marathon site at
http://www.rundfmc.org/markp2009
Ricky has a partner for the Boston Marathon.
Ricky has been chosen by Mark Porter to be Mark's Dana Farber poster child. He's a cancer survivor himself, and he's been raising money and building awareness for Dana Farber since he recovered. His donation page is at: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=283893&supid=100652342
I can't say enough about Dana Farber and guys like Mark Porter.
Bill
I can't say enough about Dana Farber and guys like Mark Porter.
Bill
Friday, April 3rd
Well, we had a scary week...Ricky had a stroke Tuesday evening, which resulted in a 911 ride to Children's for scans. He stayed overnight, was feeling better Wednesday night at home but he had a 2.5 hour bloody nose Thursday morning. He was able to go to school Friday, albeit a little late. He was very happy to go, he just loves school. Plus, it's pizza day.....and the boy likes to eat.
Long meeting with the doctors while at Children's......bottom line is he is going to have more and likely more severe strokes, and we can also expect he will be experiencing the effects of the tumor growing as well. His scans showed that he's had four strokes that have left a image, the tumor areas look pretty much the same as the MRI two weeks ago. So we have pretty bleak news, between the moya moya related strokes and the growing tumor, he's not likely to make it.
We have a follow on meeting Wednesday at Dana Farber, in the meantime, he is back on the same drug therapy since his platelets are at 120K. Most likely, we will sign a DNR order.
Thanks for all the kind words and good thoughts, they make a huge difference.
Bill
Long meeting with the doctors while at Children's......bottom line is he is going to have more and likely more severe strokes, and we can also expect he will be experiencing the effects of the tumor growing as well. His scans showed that he's had four strokes that have left a image, the tumor areas look pretty much the same as the MRI two weeks ago. So we have pretty bleak news, between the moya moya related strokes and the growing tumor, he's not likely to make it.
We have a follow on meeting Wednesday at Dana Farber, in the meantime, he is back on the same drug therapy since his platelets are at 120K. Most likely, we will sign a DNR order.
Thanks for all the kind words and good thoughts, they make a huge difference.
Bill
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