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haveyroo
Female, 34, Aberdeen, MD
"researching ROHHAD"
11:24pm, March 2, 2009

  • About Me

    Image of haveyroo

    haveyroo

    Female, 34
    Aberdeen, MD, USA
    Member since October 27, 2008

    • About Me

      I have a 4 year old daughter with Neuroblastoma cancer, Hypothalamic Dysfunction, and Paraneoplastic Syndrome

      I have a 4 year old daughter with Neuroblastoma cancer, Hypothalamic Dysfunction, and Paraneoplastic Syndrome

  • Recent Activity

    • Sorry, there is no activity in the My Activity feed.

  • Journal

    • ROHHAD and chemo

      Mood March 2, 2009 11:19pm

      I received a phone call today from Haven's nurse confirming her schedule and list of medication.Rituximab will be every Friday and we will …

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  • Hugbook

    Give haveyroo a hug



    • Hug

      From DCVille April 29

    • Prayer

      From karrievt76 December 3, 2008

      Praying for you, your daughter, and family! Sorry to hear so much is going on with your little girl!

    • Prayer

      From ctprincess October 29, 2008

      You, your daughter, and family are in my thoughts and prayers!!

    • Prayer

      From miclachapelle October 27, 2008

      My thoughts and prayers are with you!!!

    Read Hugbook

  • Photos

    haveyroo hasn’t uploaded any photos yet

  • Support Groups

    • Close Prolactinoma

      My 4 year old was diagnosed with Neuroblastoma Cancer and Hypothalamic Dysfunction in Feb. 2008. Her prolactin was a level 70. We did heavy chemo through the summer and she went down to 20. Now we're on basic chemo and in 1 month her levels are going right back up. I can't find anything on the internet for a normal prolactin level. Oncology is sending us to Endocrine now.

    • Close Kids With Cancer

      My 4 year old daughter has Neuroblastoma Cancer and ROHHAD

      Treatments

      Cytoxan Working / Worked
      Rituxan Working / Worked
      IVIG Working / Worked

  • Friends

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