Olfactory Neuroblastoma 4 year old

I didn't fully grasp what a cruel disease this is untill I got it and now a four year old child has it. They need to cure this damn disease - there is too much sufffering.  I keep reading about new treatments like immunotherapy and targeted therapy but I don't see anyone in this forum that is actually benefiting from anything like that. 

for your sweet Hudson and your family!  Tears me up to hear of a child having to deal with this!  Sending lots of love your way!!!

Harleygirl123 said:

Checking in

Juli,

Just checking in to see how Hudson is doing.  My Grandson's name is Hudson too.  I am a 3 year ENB survivor and like to connect with others.

Happy Holidays to all !!

Hi Harley Girl,

I am part of your small club.  There are so few cases reported but it seems they are now either becoming more common or possibly now being classified correctly. It seems that my initial research showed only 1k cases since 1924 but I have noticed several survivors and recent diagnosis that would indicate our club is getting bigger.  Congrats on the 3 year mark!  

Hudson's mom said:

Does anyone have experience

Does anyone have experience with proton beam therapy radiation. This is our next step we just don't know where yet either Harvard or md Anderson. 

I haven't had experience myself with proton therapy but last year there was a case of a family that kidnapped their son from a hospital that was set on doing radiotherapy on his brain. They refused it because of the side affects her son would have. The court ruled it to go ahead so they kidnapped him and got to Europe where they do proton therapy.  To cut a long story short the therapy was so successful that the little boy recovered without all the side effects of radiotherapy. He is now walking again and going to a school. He's happy and laughing, so different from the little boy with a brain tumour that couldn't walk or talk before treatment. The proton targets the part that's damaged without damaging surrounding areas. You might find the story if you put in key words in the search bar. The parents were so against radiotherapy they risked jail, in the end because of the success of the treatment the court and national health service had to backtrack and he even got the treatment paid by the national health that forbid it in the first place. It was a case of the parents know best.

jackflash22 said:

proton

I haven't had experience myself with proton therapy but last year there was a case of a family that kidnapped their son from a hospital that was set on doing radiotherapy on his brain. They refused it because of the side affects her son would have. The court ruled it to go ahead so they kidnapped him and got to Europe where they do proton therapy.  To cut a long story short the therapy was so successful that the little boy recovered without all the side effects of radiotherapy. He is now walking again and going to a school. He's happy and laughing, so different from the little boy with a brain tumour that couldn't walk or talk before treatment. The proton targets the part that's damaged without damaging surrounding areas. You might find the story if you put in key words in the search bar. The parents were so against radiotherapy they risked jail, in the end because of the success of the treatment the court and national health service had to backtrack and he even got the treatment paid by the national health that forbid it in the first place. It was a case of the parents know best.

That is a really good story and it shows the reason we need to be fully informed about treatments before the Dr puts us into his machine. I wish I knew about proton treatment when I was first told I had NPC. My cousin had prostate cancer and he did the proton treatment at MD Anderson and has hardly no side effects to speak of.

Tim

technique with minimum health tissue damage. I remember consultating with the radiologist about the option but there are only limited number of the machines available in our state and priority is given to pediatri patients. Hudson's treatment should be easier than regular radiation therapy. Hope the best for Hudson and your family! 

Hudson's mom said:

Update on Hudson

Hello everyone,

I hope you are all doing well. I received an email from here and it reminded me to give an update on Hudson so here goes:

Hudson is doing AMAZING!!! When they say children fighting cancer are real life superheros they sure are. Hudson just finished 31 days of proton radiation at Mass General hosptial in Boston. We flew there on 1/5 from california, hudson, my other son (Hunter, his twin brother, my dad and I with plans of treating olfactory neuroblastoma with radiation. the minute the plane landed I turned on my cell phone to receive many urgernt calls from our doctor back in UCSF. long story short MGH over the christmas holiday, actually one pathologist (God bless this man) over the holidays decided to do additional testing and he found 15 out of th 17 sights he tested to be present with chromsone 11/22 which is only present with Ewing Sarcoma. Hudson was rediagnosed. At first this was a huge shock however because Ewings has a tried and true chemo schedule and Hudson's tumor was not effected by the Olfactory chemo the doctors belive this is a better diagnose. Instead of starting proton radiation right away Hudson started chemo. Over the 2 months in Boston Hudson recevied 3 of the 14 cycles of chemo and 31 days of proton radiation ( Zappies is what he calls it) . we got home friday and hudson will start his 4 cycle at the end of this week. Hudson will be done with chemo before his starts kindengarten in Sept. Sorry for the long email. Its just such a great story showing the importance of the RIGHT hospital that I got a little carried away. It is always great to stay in touch so if you have facebook please friend request Hudson Strong. I dont go on this website too often. Hugs and prayers to you all.

Juli

proud mom of Hudson and Hunter

 

Thank you for the update. As I scrolled down the page, I was praying for good news for Hudson, and kinda holding my breath. [ metaphorically, as a neck breather we can't hold our breath, so we just stop breathing ] Many a day I think of Hudson and pray he will get the help, and respond to it. With Head & Neck we see the Good, Bad, and even the ugly tragedy. For the caregiver it is so hard for them to go through, but when it is their child and so young it is unimaginable what they go through.

Once we have gone through treatment and stay here to help others go through this with support and try to answer questions, we become caregivers in a small way, to the new members.

Hudson and your family will be in my thoughts and prayers. Thank you for the updat again.

Bill