Monday, May 28, 2012


so we found out chemo isnt working! im just mad that they are making me wait 3 more months till they do anything about it....what do i do in the mean time? well of course i worry ALOT.
i hate it when docs come in and say "oh the tumor grew" like its no big deal to them at all.
im going to camp waypiapi excited for that :)


  1. Hi Bailey! It is good that you are excited to go for the camp. Although the tumor grow, have to wait for another 3 months and they do nothing, these uncertainty makes you stronger. You are strong Bailey, keep it up. No one can feel it. Like me, I have to wait & watch, for the tumor in my body. Go for the camp, enjoy it.

  2. Hi, Bailey - I am praying for you! You are such an awesome young woman! If there is anything I can do, please feel free to ask. Love, Liz from church

  3. Camp will take your mind off things! Bailey---I love you so much. You make me so proud, every single day!

  4. Hi Bailey! I tried to post earlier, but it didn't show up :( I'm trying again. Maybe you'll get two.
    So sorry to hear about the tumor growing. You have a terrific attitude and I know you'll have many happy memories from camp to keep your mind off the waiting. Love and prayers to you!
    Mrs. Stone

    1. We just love you Mrs. Stone! Bailey can't wait to see you at the BBQ!!

  5. I have NF also and I feel sorry. Look on the bright side at least you do not have cancer. My father lived to age 63 with nf and died of cancer at that age 7 years shy of life expectancy and he drank and smoke in which each should have taken 10 years off his life way more than the 7 it did. I have a premailgnant condition in my throat called Barrets esophagus and if not treated son will become cancer. Pray for me please and I will pray for you. I have a treatment suggestion. When I went to the tuberous sclerosis walk in long beach ca ( TS is a similar disease to NF) I learned about a drug called afinitor which is going to be tested in people with nf it has been approved for TS already. Contact children's hospital in LA if you can they have an NF clinic, I am a few years to old to go myself.