Thought I’d let you know

    • Anonymous
      May 17, 2010 at 12:33 am

      I haven’t been on in quite a while and didn’t want any of you to think I did not appreciate your readiness to help. But we have had a tragic change in our diagnoses. After a rapid decline Caysen has been diagnosed with mld. We are told we will lose him with in 2 months to a couple of years. Oh to be able to go back with the original diagnose. I just wanted you all to be aware of this for future reference if a child does not respond or quits responding to ivig in the future. Insist on mri after mri. I have learned through an mld family site that often it doesnt show on the mri until a large amount of damage has occurred. Finding out later doesnt change the outcome, but it would sure give you more options to consider and change the way you spent your time together. I wish all of you the best of luck in your treatments and that soon they will find a cure. Give all your kids a special hug from us.

    • Anonymous
      May 17, 2010 at 8:25 am

      Caysens Nana,
      I’m so sorry Caysen has been diagnosised with mld.
      Will be saying prayers for Caysen and his family.
      My heart goes out to you.

    • Anonymous
      May 17, 2010 at 4:05 pm

      My prayers go with you and Caysen’s family in this most difficult of times.

    • Anonymous
      May 17, 2010 at 6:01 pm

      I have been hoping to hear from you regarding your grqndson and I am so sad to hear the news. Does Caysen have any siblings? I understand that with each sibling that there is a 25% chance of them being a stem cell match. That is not very high as I only have one other child. We will pray for caysen.

    • Anonymous
      May 17, 2010 at 8:11 pm

      Caysens Nana,

      Our thoughts and prayers go out to you and your family. Just know that we are all here for you during this most difficult time in your lives. Give Caysen love from us all.


    • Anonymous
      May 18, 2010 at 1:32 am

      My thoughts and prayers go out to you.

      I am not sure if you have found this forum or not but I thought I would send it to you just in case…


      Rhonda from Canada

    • May 18, 2010 at 5:24 am

      Caysens Nana,
      Praying for Caysen and family. It is so hard and I hope we can offer some comfort.

    • June 14, 2010 at 7:22 am


      I prayed for Caysen and his family (including Nana). I pray for healing, but also for peace, comfort and strength.


    • Anonymous
      August 27, 2011 at 3:04 pm

      I’m so sorry, this is so sad. I can not even begin to imagine seeing my own child go through something like, life is so unfair. My heart goes out to you all.