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Almost 1 year NED for my 6-year old and finally “giving back”.

Forums General Melanoma Community Almost 1 year NED for my 6-year old and finally “giving back”.

  • Post
    Love_Monkey
    Participant

    Rachael was diagnosed at 5 and has been NED since September 24, 2009.  We only have 9 more weeks of interferon and she's doing great!

    I started a new project to help other families who have children diagnosed with melanoma.  I'm hoping it will be a place that new parents come come to, get their questions answered and not be scared.  I have linked this board in the "Resources" and would like to ask ya'll to keep this site in mind when you have parents of children come here to ask questions.

    Rachael was diagnosed at 5 and has been NED since September 24, 2009.  We only have 9 more weeks of interferon and she's doing great!

    I started a new project to help other families who have children diagnosed with melanoma.  I'm hoping it will be a place that new parents come come to, get their questions answered and not be scared.  I have linked this board in the "Resources" and would like to ask ya'll to keep this site in mind when you have parents of children come here to ask questions.

    Littlest Warrior Spot

    Blessings to you all!

    Danielle

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  • Replies
      paleskinisin
      Participant

      So glad to hear she is doing so well!  Congratulations to her and the entire family.  Also, what an amazing thing you are doing for other families.

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      paleskinisin
      Participant

      So glad to hear she is doing so well!  Congratulations to her and the entire family.  Also, what an amazing thing you are doing for other families.

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      rj
      Participant

      Take heart!  Our friends have a daughter diagnosed at 2 with 3C MM.  Primary and left groin lymph nodes were removed.  She had surgery and did a year of interferon.  She and her family were an inspiration to us when we experienced similar circumstances.  The most important thing in this post—she is now a lively 9 year old and has had no recurrence!

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        Love_Monkey
        Participant

        I would LOVE to include her story on "Other Little Warriors"!  I do not know any child 7 yrs. NED (thought I know they are out there of course) and that would provide great hope for new families!

        Would you PLEASE pass along the infomation to your friends and ask if they would consider contacting me for inclusion?

        Thank you so much!

        Danielle ([email protected])

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        Love_Monkey
        Participant

        I would LOVE to include her story on "Other Little Warriors"!  I do not know any child 7 yrs. NED (thought I know they are out there of course) and that would provide great hope for new families!

        Would you PLEASE pass along the infomation to your friends and ask if they would consider contacting me for inclusion?

        Thank you so much!

        Danielle ([email protected])

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      rj
      Participant

      Take heart!  Our friends have a daughter diagnosed at 2 with 3C MM.  Primary and left groin lymph nodes were removed.  She had surgery and did a year of interferon.  She and her family were an inspiration to us when we experienced similar circumstances.  The most important thing in this post—she is now a lively 9 year old and has had no recurrence!

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      King
      Participant

      Danielle,

       

      Thank you for the update on Rachael.  I've often thought of you.  What a wonderful gift you are giving to others on Littlest Warrior Spot.  What a difference a year makes…..  I hope you plan a big celebration  when the Interferon is completed.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Danielle,

       

      Thank you for the update on Rachael.  I've often thought of you.  What a wonderful gift you are giving to others on Littlest Warrior Spot.  What a difference a year makes…..  I hope you plan a big celebration  when the Interferon is completed.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      Tim–MRF
      Guest

      Danielle:

      Thank you for sharing this.

      I had a call from a woman last week whose 8 year old niece was recently diagnosed.  She is scheduled for for sentinel node biopsy, then they will see what is next.  I plan to contact her and tell her about your site.

      You allude to a very important issue, though.  Spitzoid nevi are more common in children than is melanoma, yet they are very difficult to distinguish.  I hope people can learn that if their child is diagnosed with melanoma they should be sure the path report is read by a very good dermatopathologist who is able to make that distinction.

       

      Tim–MRF

       

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        Love_Monkey
        Participant

        Tim,

        It was one of the most confusing things to me in the beginning and I certainly do not pretend to understand it still.  Rahchael's first pathology report said it was a benign spitzoid but forwarded the primary mole to Baylor.  Three different hospitals (Mayo, Texas Children's/Baylor and M.D. Anderson) looked at the initial biopsy and could not agree.  It wasn't until the SNL found macro-mets in the node that we knew for sure what we were looking at.

        One of my "pet peeves" now is when I hear the term "Spitzoid melanoma".  As far as I can determine, there is no such thing and in fact, the difference can be life or death.

        I still have a LOT to learn though and this project is in its infancy.  I want to partner with as many smart people as I can… as they find me and take pity on me!

        Danielle

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        Love_Monkey
        Participant

        Tim,

        It was one of the most confusing things to me in the beginning and I certainly do not pretend to understand it still.  Rahchael's first pathology report said it was a benign spitzoid but forwarded the primary mole to Baylor.  Three different hospitals (Mayo, Texas Children's/Baylor and M.D. Anderson) looked at the initial biopsy and could not agree.  It wasn't until the SNL found macro-mets in the node that we knew for sure what we were looking at.

        One of my "pet peeves" now is when I hear the term "Spitzoid melanoma".  As far as I can determine, there is no such thing and in fact, the difference can be life or death.

        I still have a LOT to learn though and this project is in its infancy.  I want to partner with as many smart people as I can… as they find me and take pity on me!

        Danielle

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      Tim–MRF
      Guest

      Danielle:

      Thank you for sharing this.

      I had a call from a woman last week whose 8 year old niece was recently diagnosed.  She is scheduled for for sentinel node biopsy, then they will see what is next.  I plan to contact her and tell her about your site.

      You allude to a very important issue, though.  Spitzoid nevi are more common in children than is melanoma, yet they are very difficult to distinguish.  I hope people can learn that if their child is diagnosed with melanoma they should be sure the path report is read by a very good dermatopathologist who is able to make that distinction.

       

      Tim–MRF

       

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      Love_Monkey
      Participant

      I think it's funny that I misspelled my own daughter's name!  Stupid small netbook keyboard!

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      Love_Monkey
      Participant

      I think it's funny that I misspelled my own daughter's name!  Stupid small netbook keyboard!

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      jtheisen29
      Participant

      Danielle,

       

      I just wanted to say that your daughters story moved me. I just sat for the last couple hours reading your blog on this journey of cancer. My twin sister was diagnosed with melanoma stage 3b while 5months pregnant last year Sept 21 2009. We just celebrated her 1 year N.E.D mark. I have had to help take care of the baby and her 6 year old at times while she did her treatment and the 1st month was the worst for her… it brings tears to my eyes to see what she went through and to read that your daughter had to endure the same treatment. So this message is for no other reason but to tell you that my family will add your family to our prayer list. But as I read so many people are praying for her! God does amazing things:) God answered my prayers for my nephew to be born healthy (melanoma can cross the placenta), my sisters tests to come back clear, and for minimal side effects with the treatment ( she is able to play volleyball 2 times a week!). Keeping you all in our prayers and thanks for sharing her story, such a beautiful little girl!

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        Love_Monkey
        Participant

        Thank you so much.  We sure love her!

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        Love_Monkey
        Participant

        Thank you so much.  We sure love her!

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      jtheisen29
      Participant

      Danielle,

       

      I just wanted to say that your daughters story moved me. I just sat for the last couple hours reading your blog on this journey of cancer. My twin sister was diagnosed with melanoma stage 3b while 5months pregnant last year Sept 21 2009. We just celebrated her 1 year N.E.D mark. I have had to help take care of the baby and her 6 year old at times while she did her treatment and the 1st month was the worst for her… it brings tears to my eyes to see what she went through and to read that your daughter had to endure the same treatment. So this message is for no other reason but to tell you that my family will add your family to our prayer list. But as I read so many people are praying for her! God does amazing things:) God answered my prayers for my nephew to be born healthy (melanoma can cross the placenta), my sisters tests to come back clear, and for minimal side effects with the treatment ( she is able to play volleyball 2 times a week!). Keeping you all in our prayers and thanks for sharing her story, such a beautiful little girl!

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