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Sharing some encouragement: Clear scans (Stage IV)

Forums General Melanoma Community Sharing some encouragement: Clear scans (Stage IV)

  • Post
    MaryD
    Participant

      I feel very fortunate to say that the clear scan report I received today marks the two year anniversay since my last recurrence.  Even more significant is that it's 3 years since I progressed to stage IV via a lung met with no further incidents internally.

      When I was diagnosed almost 10 years ago, I could never have imagined looking ahead this far and believe I would still be here.  But 5 recurrences later coupled with INF, vaccine trial, radiation, Ipi, and pulsed IL-2,  here I am feeling very humbled and blessed.

      I feel very fortunate to say that the clear scan report I received today marks the two year anniversay since my last recurrence.  Even more significant is that it's 3 years since I progressed to stage IV via a lung met with no further incidents internally.

      When I was diagnosed almost 10 years ago, I could never have imagined looking ahead this far and believe I would still be here.  But 5 recurrences later coupled with INF, vaccine trial, radiation, Ipi, and pulsed IL-2,  here I am feeling very humbled and blessed.

      Over the years, this board has been a lifeline to share  the best and worst case scenarios of this devastating disease,  laughter and tears, and most of all . . amazing .friendships.  This is a difficult journey to be sure, but I can attest to the fact there is hope out there and the prospect of living with the beast as a manageable disease.

      And now .. .it's time for a happy dance!!  :)  :)

      Mary

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    • Replies

        Congratualtions Mary.  I depend on these Huge glimpses of hope.  I am really struggling with mine right now even though I received great scans last week also.  I can't seem to get out of my own head.  My head is my biggest battle! 

        Thank you for reminding me that HOPE is what it is all about.

        Take care and have fun doing the happy dance.

        Shelly in SW

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          Vermont_Donna
          Participant

            Hi Mary,

               Did I ever need to read your post…thanks! So happy for you and hopeful for me at the same time…..Keep on dancing!

            Hugs,

            Vermont_Donna

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            Vermont_Donna
            Participant

              Hi Mary,

                 Did I ever need to read your post…thanks! So happy for you and hopeful for me at the same time…..Keep on dancing!

              Hugs,

              Vermont_Donna

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            Congratualtions Mary.  I depend on these Huge glimpses of hope.  I am really struggling with mine right now even though I received great scans last week also.  I can't seem to get out of my own head.  My head is my biggest battle! 

            Thank you for reminding me that HOPE is what it is all about.

            Take care and have fun doing the happy dance.

            Shelly in SW

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            lhaley
            Participant

              Mary,

              That is fantastic news!!!! What a great milestone to accomplish – 2 years since your last recurrance!  

              You had been posting while doing the pulsed IL2, are you finished with it now?  Weren't you NED when you started that treatment?  I am facing decision time next week and am interested in this.

              Doing the happy dance for you, we needed some good news to be shared around here!!

              Linda

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                MaryD
                Participant

                  Hi Linda,

                  I did pulsed IL-2 once a month for six months last year (March – August).  It required a 2 day stay in the hospital and really was an abbreviated version of the year long maintneance treatment that is often adminstered after biochemo (I didn't need to do that).

                  It was a tough choice as I had been waiting to get into another clinical trial that didn't materialize and since I had always done some kind of adjuvant treatment after resectable reucurrences, decided to do it.

                  Honestly, I haven't heard of anyone else doing this but I'm sure there are a few other of us crazy people out there  :)  :)

                  Wishing you the best of luck with your treatment decisions . .

                  Mary

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                  esposir2
                  Participant

                    HI  Can you tell me what is biochem treatment?

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                    SuzannefromCA
                    Participant

                      Hi I am a stage IV Biochemotherapy survivor and would love to tell you about it. I am 4 years NED. iI have my story on my profile too.

                      ~Suzanne

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                      SuzannefromCA
                      Participant

                        Hi I am a stage IV Biochemotherapy survivor and would love to tell you about it. I am 4 years NED. iI have my story on my profile too.

                        ~Suzanne

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                        esposir2
                        Participant

                          HI  Can you tell me what is biochem treatment?

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                          MaryD
                          Participant

                            Hi Linda,

                            I did pulsed IL-2 once a month for six months last year (March – August).  It required a 2 day stay in the hospital and really was an abbreviated version of the year long maintneance treatment that is often adminstered after biochemo (I didn't need to do that).

                            It was a tough choice as I had been waiting to get into another clinical trial that didn't materialize and since I had always done some kind of adjuvant treatment after resectable reucurrences, decided to do it.

                            Honestly, I haven't heard of anyone else doing this but I'm sure there are a few other of us crazy people out there  :)  :)

                            Wishing you the best of luck with your treatment decisions . .

                            Mary

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                          lhaley
                          Participant

                            Mary,

                            That is fantastic news!!!! What a great milestone to accomplish – 2 years since your last recurrance!  

                            You had been posting while doing the pulsed IL2, are you finished with it now?  Weren't you NED when you started that treatment?  I am facing decision time next week and am interested in this.

                            Doing the happy dance for you, we needed some good news to be shared around here!!

                            Linda

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                            jag
                            Participant

                              Congratulations Mary,

                              May you stay NED for the rest of your life.

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                              jag
                              Participant

                                Congratulations Mary,

                                May you stay NED for the rest of your life.

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                                King
                                Participant

                                  Mary,

                                   

                                  Words can not express how happy this news makes me!!!!  Are you still dancing?  I'm still smiling…..

                                   

                                  Stay Strong
                                  King

                                  Stage IV 7/05 Liver mets

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                                    leni currie
                                    Participant

                                      Love it Mary – trying to get to San Ramon  in late Oct or Nov.  will keep you  posted – a celebration bfast, lunch or dinner is in order!  Love,Leni

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                                      leni currie
                                      Participant

                                        Love it Mary – trying to get to San Ramon  in late Oct or Nov.  will keep you  posted – a celebration bfast, lunch or dinner is in order!  Love,Leni

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                                        SuzannefromCA
                                        Participant

                                          Hi Leni, I live in Danville, and would love to be in on the celebration too! I am a stage IV survivor who completed Biochemotherapy, and pulse for 18 months and I am 4 years NED!

                                          ~Suzanne

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                                          SuzannefromCA
                                          Participant

                                            Hi Leni, I live in Danville, and would love to be in on the celebration too! I am a stage IV survivor who completed Biochemotherapy, and pulse for 18 months and I am 4 years NED!

                                            ~Suzanne

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                                          King
                                          Participant

                                            Mary,

                                             

                                            Words can not express how happy this news makes me!!!!  Are you still dancing?  I'm still smiling…..

                                             

                                            Stay Strong
                                            King

                                            Stage IV 7/05 Liver mets

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                                            bill58
                                            Participant

                                              Mary,

                                              Congratulations.  A happy dance is in order.smiley

                                              May the clear scans continue.

                                              I really need to hear more stories like this so that it gives me hope to make it through the struggles that are ahead of me.

                                              Bill Stage IV for the past week

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                                              bill58
                                              Participant

                                                Mary,

                                                Congratulations.  A happy dance is in order.smiley

                                                May the clear scans continue.

                                                I really need to hear more stories like this so that it gives me hope to make it through the struggles that are ahead of me.

                                                Bill Stage IV for the past week

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                                                Sherron
                                                Participant

                                                  Awesome news…Yes, do the "Happy Dance".

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                                                  Sherron
                                                  Participant

                                                    Awesome news…Yes, do the "Happy Dance".

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                                                    killmel
                                                    Participant

                                                      Great news..What is "pulsed IL2"???Thanks & good luck!

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                                                        MaryD
                                                        Participant

                                                          Pulsed IL-2 is usually a maintenance treatment administered after biochemotherapy.   My Dr. and I decided to do a shorter version (it is usually 12 months) of 6 months – a two day hospital stay once a month X 6.   Three different doses are administered over a period of 42 hours.   It is not as intense as high dose IL-2 but does require careful monitoring while being treated.

                                                          Hope that helps . .

                                                          Mary

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                                                          MaryD
                                                          Participant

                                                            Pulsed IL-2 is usually a maintenance treatment administered after biochemotherapy.   My Dr. and I decided to do a shorter version (it is usually 12 months) of 6 months – a two day hospital stay once a month X 6.   Three different doses are administered over a period of 42 hours.   It is not as intense as high dose IL-2 but does require careful monitoring while being treated.

                                                            Hope that helps . .

                                                            Mary

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                                                          killmel
                                                          Participant

                                                            Great news..What is "pulsed IL2"???Thanks & good luck!

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                                                            ValinMtl
                                                            Participant

                                                              Hi Mary,

                                                              Delighted to hear that you are NED!  What great news! 

                                                              You mention that you had ipi and THEN pulsed IL-2…Could you explain what exactly pulsed IL-2 is, would greatly appreciate info.  Val Stage IV with first round of ipi completed!!!

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                                                              ValinMtl
                                                              Participant

                                                                Hi Mary,

                                                                Delighted to hear that you are NED!  What great news! 

                                                                You mention that you had ipi and THEN pulsed IL-2…Could you explain what exactly pulsed IL-2 is, would greatly appreciate info.  Val Stage IV with first round of ipi completed!!!

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                                                                Rebecca and Bob
                                                                Participant

                                                                  Mary,

                                                                   

                                                                  Great to read your good news!! You and John and both making things better today.

                                                                  May you never see mel again.

                                                                  Rebecca

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                                                                  Rebecca and Bob
                                                                  Participant

                                                                    Mary,

                                                                     

                                                                    Great to read your good news!! You and John and both making things better today.

                                                                    May you never see mel again.

                                                                    Rebecca

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                                                                    Kevin from Atlanta
                                                                    Participant

                                                                      That is great news and I needed to hear it. Thank you for sharing.

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                                                                      Kevin from Atlanta
                                                                      Participant

                                                                        That is great news and I needed to hear it. Thank you for sharing.

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                                                                        JenM
                                                                        Participant
                                                                          Congratulations…so happy for you!

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                                                                          JenM
                                                                          Participant
                                                                            Congratulations…so happy for you!

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                                                                            James from Sydney
                                                                            Participant

                                                                              Hi Mary

                                                                              i am so happy to hear the news, you give hope to so many.

                                                                              best wishes

                                                                              James

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                                                                              James from Sydney
                                                                              Participant

                                                                                Hi Mary

                                                                                i am so happy to hear the news, you give hope to so many.

                                                                                best wishes

                                                                                James

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                                                                                Jim M.
                                                                                Participant

                                                                                  Hi Mary,

                                                                                   If I were there I'd ask for the dance and do the happy dance with you! I am soooooo happy for you. You are a special person and an amazing warrior. I pray you do happy dances for many years to come!

                                                                                  God Bless,

                                                                                   Jim M.

                                                                                   

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                                                                                  Jim M.
                                                                                  Participant

                                                                                    Hi Mary,

                                                                                     If I were there I'd ask for the dance and do the happy dance with you! I am soooooo happy for you. You are a special person and an amazing warrior. I pray you do happy dances for many years to come!

                                                                                    God Bless,

                                                                                     Jim M.

                                                                                     

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                                                                                    Jim in Denver
                                                                                    Participant

                                                                                      Hi Mary,

                                                                                      Your story is most inspiring and encouraging to many of us.  I hope to be where you are now, but have a long way to go.  Let me be the 3rd Jim in a row here to send many good wishes!!!!

                                                                                      Best,

                                                                                      Jim in Denver

                                                                                       

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                                                                                      Jim in Denver
                                                                                      Participant

                                                                                        Hi Mary,

                                                                                        Your story is most inspiring and encouraging to many of us.  I hope to be where you are now, but have a long way to go.  Let me be the 3rd Jim in a row here to send many good wishes!!!!

                                                                                        Best,

                                                                                        Jim in Denver

                                                                                         

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                                                                                        Lauren mom to Jenna
                                                                                        Participant

                                                                                          So glad to hear!!  My dancing shoes are on!!

                                                                                           

                                                                                          Lauren (mom to Jenna)

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                                                                                          Lauren mom to Jenna
                                                                                          Participant

                                                                                            So glad to hear!!  My dancing shoes are on!!

                                                                                             

                                                                                            Lauren (mom to Jenna)

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                                                                                            bcforce
                                                                                            Participant

                                                                                              Mary,

                                                                                              Thanks so much for sharing your good news.  My history is very similar to yours, but I am in the middle of it instead of at the successfull end of it!  I am currently under treatment at the Angeles Clinic (John Wayne Cancer Center) in Los Angeles.  I currently have two tumors, both about 14 mm, in my left lung, and have had several others removed surgically over the last 4 years.  I just finished a clinical trial for combo of Taxotere and YM 155 which slowed growth but did stop it.  Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors.  I know that, as time goes by, we'll find the right combination of meds.  We'll be trying IPI next, if this new trial med doesn't help. 

                                                                                              Again, thanks for sharing your encouraging news! 

                                                                                               

                                                                                              Bob (from Visalia)

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                                                                                                killmel
                                                                                                Participant

                                                                                                  Hi Bob,

                                                                                                   

                                                                                                  I am just curious why your doctor just does not put you on IPI???

                                                                                                  There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial  which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??

                                                                                                  What does your doctor say about IPI???

                                                                                                  Thanks for replying

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                                                                                                  killmel
                                                                                                  Participant

                                                                                                    Hi Bob,

                                                                                                     

                                                                                                    I am just curious why your doctor just does not put you on IPI???

                                                                                                    There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial  which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??

                                                                                                    What does your doctor say about IPI???

                                                                                                    Thanks for replying

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                                                                                                  bcforce
                                                                                                  Participant

                                                                                                    Mary,

                                                                                                    Thanks so much for sharing your good news.  My history is very similar to yours, but I am in the middle of it instead of at the successfull end of it!  I am currently under treatment at the Angeles Clinic (John Wayne Cancer Center) in Los Angeles.  I currently have two tumors, both about 14 mm, in my left lung, and have had several others removed surgically over the last 4 years.  I just finished a clinical trial for combo of Taxotere and YM 155 which slowed growth but did stop it.  Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors.  I know that, as time goes by, we'll find the right combination of meds.  We'll be trying IPI next, if this new trial med doesn't help. 

                                                                                                    Again, thanks for sharing your encouraging news! 

                                                                                                     

                                                                                                    Bob (from Visalia)

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                                                                                                    Father is stage IV
                                                                                                    Participant

                                                                                                      Mary,

                                                                                                      Great news!!  May your happy dance continue forever!

                                                                                                      Krista

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                                                                                                      Father is stage IV
                                                                                                      Participant

                                                                                                        Mary,

                                                                                                        Great news!!  May your happy dance continue forever!

                                                                                                        Krista

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                                                                                                        Rocklove
                                                                                                        Participant

                                                                                                          Congratulations Mary!! There are a lot of us doing the Happy Dance with you on this board.

                                                                                                          Always Positive Thoughts and Prayers for Mary and Family.

                                                                                                          Rocky (Stage IV Liver Mets)

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                                                                                                          Rocklove
                                                                                                          Participant

                                                                                                            Congratulations Mary!! There are a lot of us doing the Happy Dance with you on this board.

                                                                                                            Always Positive Thoughts and Prayers for Mary and Family.

                                                                                                            Rocky (Stage IV Liver Mets)

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                                                                                                            himynameiskevin
                                                                                                            Participant

                                                                                                              I am very happy to here your news, Congratulations, I just finished my second round of IL-2 (I've got my fingers crossed). Take Care. -Kevin

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                                                                                                              himynameiskevin
                                                                                                              Participant

                                                                                                                I am very happy to here your news, Congratulations, I just finished my second round of IL-2 (I've got my fingers crossed). Take Care. -Kevin

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                                                                                                                NancyD
                                                                                                                Participant

                                                                                                                  Oh Mary, I am so doing the happy dance with you!  What a miracle!  God is so good.  You have really been through a lot but these clear scans are amazing.

                                                                                                                   

                                                                                                                  Nancy D

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                                                                                                                  NancyD
                                                                                                                  Participant

                                                                                                                    Oh Mary, I am so doing the happy dance with you!  What a miracle!  God is so good.  You have really been through a lot but these clear scans are amazing.

                                                                                                                     

                                                                                                                    Nancy D

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                                                                                                                    Linda/Kentucky
                                                                                                                    Participant

                                                                                                                      Mary

                                                                                                                      Your have truely been blessed~~~~  Thank you for your encouragement we really needed it.  Been kind of a rough

                                                                                                                      week and upcoming scans in about 1 1/2 weeks.

                                                                                                                       

                                                                                                                      Linda/Kentucky

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                                                                                                                      Linda/Kentucky
                                                                                                                      Participant

                                                                                                                        Mary

                                                                                                                        Your have truely been blessed~~~~  Thank you for your encouragement we really needed it.  Been kind of a rough

                                                                                                                        week and upcoming scans in about 1 1/2 weeks.

                                                                                                                         

                                                                                                                        Linda/Kentucky

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                                                                                                                        NancyGM
                                                                                                                        Participant

                                                                                                                          Mary, So happy to hear your continuing good news. I, too have been NED for over 2 years and am over 3 years out from stage IV w/ lung met. I did Temodar only. I feel humbled as well.

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                                                                                                                          NancyGM
                                                                                                                          Participant

                                                                                                                            Mary, So happy to hear your continuing good news. I, too have been NED for over 2 years and am over 3 years out from stage IV w/ lung met. I did Temodar only. I feel humbled as well.

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                                                                                                                            SuzannefromCA
                                                                                                                            Participant

                                                                                                                              Mary, as you know I hardly go on here, but just read your message. I am THRILLED to hear the news!!!  Dance, dance, dance! Woo hoo! You have been a great friend and we need to celebrate and get together that California lunch gathering we were talking about.

                                                                                                                              I saw someone posted about getting together in San Ramon. Since you know so many on this board, I'm sure we can get the word out. Let's plan it!

                                                                                                                              Next week I will be in Maui, but when I get home, let's plan. I can put the word out on Facebook, and you can get the word out on this board.

                                                                                                                              Again, I am so happy to hear your news!

                                                                                                                              ~Suzanne

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                                                                                                                              SuzannefromCA
                                                                                                                              Participant

                                                                                                                                Mary, as you know I hardly go on here, but just read your message. I am THRILLED to hear the news!!!  Dance, dance, dance! Woo hoo! You have been a great friend and we need to celebrate and get together that California lunch gathering we were talking about.

                                                                                                                                I saw someone posted about getting together in San Ramon. Since you know so many on this board, I'm sure we can get the word out. Let's plan it!

                                                                                                                                Next week I will be in Maui, but when I get home, let's plan. I can put the word out on Facebook, and you can get the word out on this board.

                                                                                                                                Again, I am so happy to hear your news!

                                                                                                                                ~Suzanne

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