Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Jon and Teri, This is hard to hear....I can only imagine what you are both going through. I wish I lived closer to you so that I could do something concrete for you. You are both in my thoughts and prayers every day and that will always be the case. Please keep us posted when you can. Love you both so much!! MB Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, January 15, 2009 11:49:09 PMSubject: jon update........ jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Jon and Teri, This is hard to hear....I can only imagine what you are both going through. I wish I lived closer to you so that I could do something concrete for you. You are both in my thoughts and prayers every day and that will always be the case. Please keep us posted when you can. Love you both so much!! MB Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, January 15, 2009 11:49:09 PMSubject: jon update........ jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Jon and Teri, This is hard to hear....I can only imagine what you are both going through. I wish I lived closer to you so that I could do something concrete for you. You are both in my thoughts and prayers every day and that will always be the case. Please keep us posted when you can. Love you both so much!! MB Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, January 15, 2009 11:49:09 PMSubject: jon update........ jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Teri/Jon ... I am glad to know about Jon, we care about each other here but so sad to read about what you are facing right now. I know your family is totally on edge. Nothing I can say helps but know I am praying for Jon and the family. Especially that the upcoming weeks will pass quickly and easily for Jon. I will be watching for updates. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! jon update........ jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Teri/Jon ... I am glad to know about Jon, we care about each other here but so sad to read about what you are facing right now. I know your family is totally on edge. Nothing I can say helps but know I am praying for Jon and the family. Especially that the upcoming weeks will pass quickly and easily for Jon. I will be watching for updates. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! jon update........ jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Teri/Jon ... I am glad to know about Jon, we care about each other here but so sad to read about what you are facing right now. I know your family is totally on edge. Nothing I can say helps but know I am praying for Jon and the family. Especially that the upcoming weeks will pass quickly and easily for Jon. I will be watching for updates. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! jon update........ jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Teri & Jon, I have thought of what to say and am a loss except that you both know our Father. He can give you peace.I would give anything to be with you. I know there isn't anything I could do but I would HOLD you and pray with you. Iknow things seem so dark for you.-me too- but I can see the sunshine today I am going to see my friend tonight forthe week-end. I am greatfull. Hold on to each other. i love you Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Teri & Jon, I have thought of what to say and am a loss except that you both know our Father. He can give you peace.I would give anything to be with you. I know there isn't anything I could do but I would HOLD you and pray with you. Iknow things seem so dark for you.-me too- but I can see the sunshine today I am going to see my friend tonight forthe week-end. I am greatfull. Hold on to each other. i love you Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." jon wanted me to post for those of you who know us.. today jon and i went to our hemo. appt.. the dr. saw me, said.. we have some answers.. i didn't like the sound of it,, and soon we found out i was right. jon has what is called mds. myelodysplastic syndrome. other wise known as pre leukemia something or other.. its not cancer yet,, but left untreated or if the treatment doesn't work,, it can lead to leukemia. he will start chemo next week probably,, there are some factors yet not known , when they are in, the drs. will decide which form of chemo they will do. they are talking about using a pill,, or at last resort, there is a regime of 7 straight days of it a month. he is no longer able to have a lung transplant,, because of the bone marrow,, and not able to have a bone marrow transplant because of the lungs. so basically, its just a toss of the coin.. which disease will he die from?? we are naturally taking this hard,, our children are as well,, just when things were starting to look up,, once again we are hit down. we will try to keep breathing , but its not easy right now at all......... ((((hugs)))) teri jon ipf 5-06 mds 1-09 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Hi Teri & Jon, I wish the news was better than what you got, it makes me feel bad for you guys, but I know Jon is a fighter, and KNOW that Jon isn't quiting yet. I'll call you this weekend---tell Jon I think about you guys everyday. Love & Sharon Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.