If you know anyone dealing with Neuroblastoma….


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Please pass this along to them. I found this about 2 months after Ronan was diagnosed and it became my bible. A group of parents put this together. I hope you all are well. We are alright here. Just trying to prepare for this Poppy baby a bit.

Love you all.

xoxo
http://www.cncfhope.org/cms_images/file_72.pdf

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14 thoughts on “If you know anyone dealing with Neuroblastoma….

  1. Glenda

    RoMama,

    Hope you and PopStar are doing well.
    Can’t wait for you to hold your princess Poppy 🙂
    Thinking of you & Rockstar Ronan
    Always RoLove
    xo

  2. Chelsea

    Can’t wait for poppy! I am so glad that parents have you to help direct them, and it makes me so sad and mad that there isn’t a better system in place in the healthcare field to help guide parents. Parents should not be having to make these decisions alone!

  3. Deb

    For those who are voting like mad on the blog (like me) – here are some tips I have found:
    1. you don’t need to include the spaces between the words; 2. you don’t need to make cap letters – it accepts small case letters always; 3. it’s pretty forgiving, you can miss a letter once in a while and it still accepts it; and 4. if you get a word that’s very hard to read, to save time, just hit – VOTE and don’t even try it. You’ll get a new pair of words right away. It’s fun to have more than one person at a time voting – esp at night. VOTE FOR RO BABY!

  4. Jen Brianas

    Thank you for sharing, I did send to a friend who is helping a little girl with relapsed neuroblastoma. I saw on Facebook she is in ER today with fever, vomiting, very lethargic. I hope her parents can read, I read through a lot and can only imagine how helpful a resource like this is.

    Poppy is going to be a rockstar like her big brother Ro!!!

  5. Erika Murguia

    Hi ro mama ,please keep us updated on how you are and poppy and the whole fam bam please and thanku & take care Rolove forever ❤ =)

  6. Tara Simko

    Happy to report that I know no one dealing Neuroblastoma, but I know enough to know that I will always be looking over my shoulder. Thinking of you all the time- as if you’re a personal friend- so funny- very excited for you and can’t wait to see pictures- it’s amazing how much she looks like Ronan!! Love to you and the gang and hopefully a Happy St. Paddy’s… xxx

  7. Jenn

    Take care of that baby! I hope I never have to share that manual with anyone:( Can’t wait to see you and your beautiful little girl. I hope she brings you new happiness. Always love.

  8. Jennifer

    Thank you for posting this link. My 4 year old son has stage 4 refractory neuroblastoma and is heading into stem cell transplant next Tuesday. I’m nervous, scared, a little confused, but hopeful. I read your words often and wish you all the best with your soon-to-be-here little girl!

  9. Maura

    Hi! I found this through Taylor’s song, I just wanted to say that I was sad to hear that Ronan passed because of neuroblastoma. I can feel some of the pain you’re feeling because my 3 year old baby cousin, Dante, passed away because of the same kind of cancer. It was about 4 years ago and everytime I hear Taylor’s song I remember him and of course I cry until I can’t anymore.. I’m soo so sorry for your lose and I appreciate how you can make something so sad into a something so much bigger because of this website and the foundation!

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