It’s so rare that I’m having an extremely hard time finding information online…
We live in Australia and I would really love to hear of any experiences here as I've only found 1 other lady here who unfortunately has this.. my son is 9 and has been diagnosed as stage 4... it is in his bones
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Help a mama out and respond anonymously on our forum. Has anyone had any experience with olfactory neuroblastoma (a very aggressive and rare form of cancer)
I wish I had more information for you. I’m sorry your family is going through this
https://www.hopkinsmedicine.org/health/conditions-and-diseases/olfactory-neuroblastoma
Here’s some info from a top US hospital. Good luck to your son.
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Sending positive vibes
Prayers 
for him and his family.
Unfortunately I have no information for you but I’m sending prayers for u and ur son
Prayers for your son and your family
go to mayo clinic .com on line it may help
I am suffering from breast cancer and I can understand what you must be going through right now. Wish I could help you. Lots of prayers for your son. I would however suggest you to start his treatment as soon as possible. I have seen cases of stage 4 cancer getting cured. So do not lose hope. May God be with you. Lots of prayers and hugs and kisses.
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. I’m so sorry. I can’t imagine how scared you must be.
Looks like there’s actually a private fb group for it. Sending prayers❤️
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Miraculous healing prayers for him!
My cousin had it I remember it’s very rare I did a lot of research. Prayers to you God heal your baby
Adding your son in my daily prayers 
Not olfactory but my baby was 4 months old when Diagnosed with MYCN amplified ALK positive neuroblastoma. The most agggressive neuroblastoma. My daughter was also stage 4. There are lots of onlin communities. And I will tell you I have seen kids light up head to toe and become NED quickly. Thinking of you in this awful horrible time
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Join support groups on social media. I have frontal lobe minigiomia ive learned alot from them there are several for brain tumor patients. Some of these folks have been brain/cancer patients for many yrs they prob have better answers to your quests. My best to you/your child
Have you called St Jude’s Children’s Hospital or gone on their website yet? Many prayers for your family🙏
My daughter was diagnosed with stage four nuroblastoma tumor by her left to kidney and affected her bone marrow also had a few spots on he skull as of yesterday and five rounds of chemo everything is gone on skull and mass has skunk 95 percent we go onto surgery next and then we do 6th round of chemo and put her stem cells back and then radiation and antibody therapy! It’s a long scary road prayers mama! If u Wana follow our journey join us on f.b Spooky Strong or if u have TikTok Jamiebice0
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Hey! Unfortunately our experience with Neuroblastoma is not a good one. My older brother passed away in 2002 at the age of 8 due to Neuroblastoma. Some kids that experienced the journey with him survived however. I wish you all the best and my heart is with you as I know first hand how this is. Good luck mama
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My cousins son who is the same age as my son was diagnosed with stage 4 neuroblastoma when he was but a toddler. He is in remission and has been for quite some time. He is now 12.
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Hi. My son had stage 4. All over- even in bones and bone marrow. Feel free to reach out.
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I’m sorry if this isn’t helpful but have you spoken to different doctors about it most will give leaflets and stuff to help get more information about it
my grandpa was healthy in August 2007 and had a seizure and was gone on Christmas eve 2007. It was very tramatic.
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Praying for your son🙏
Could you please private message me. I have something could possibly help.
Prayers for your son.
Please contact St. Jude Children’s research hospital in Memphis, TN. As long as there is an open trial (which is extremely likely) and you’ve had no previous treatment, they will pay to get you there, house and feed you for free and never charge you for treatment. Not only that, but they are THE BEST when dealing with childhood cancer.
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Jimmy fund in Massachusetts!
The best treatment is radiation therapy.
I’m going to suggest something off the beaten path. “How to Starve Cancer” is a great book about off-label drug use to help beat cancer, and it is available on Amazon. There is a great group for the book here on FaceBook as well. I realize some people won’t like this suggestion - but I know if this were my child I would be looking inside AND outside of the box. I will be praying for your son, his doctors, and you. (((hugs)))
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