Olfactory Neuroblastoma 4 year old

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Hi My son Hudson was recently diagnosed with Olfactory neuroblastoma on 9/22. it took two weeks for final pathology results to come in. We started chemo on 10/5 and yesterday we had our first CT scan post chemo and it showed that the tumor is growing. I am looking for any input, suggestions etc on what did work if you have also had the rare cancer. I understand treatment may rare for a pediatric patient however we need to stop the growth and start kicking this cancer. Please help

thank you,

Juli

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Comments

  • Barbaraek
    Barbaraek Member Posts: 626
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    Juli

    I'm sorry that you and your family are fighting this disease. Cancer in so evil. I don't know about olfactory neuroblastomas, but there are many different chemotherapy agents and regimens out there. I'll add my prayers that the doctors working with you find the best one to help Hudson.

    Barbara

  • lifeisDHA
    lifeisDHA Member Posts: 64
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    I am heartbroken to hear this

    I don't have experience with this rare cancer but after googling online I see people are treated with surgery. Please find the big cancer centers. I will pray for Hudson everyday.

  • BarryChen1010
    BarryChen1010 Member Posts: 27
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    Sorry to hear this. It's

    Sorry to hear this. It's really tough to have a four year old to go through this. I have no knowledge on this particular c, but if radiation becomes an option, you can consider proton therapy which is said to have much benefits for pediatrician.

    God bless!

  • wmc
    wmc Member Posts: 1,804
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    Welcome to the H&N Group

    Welcome to the H&N, and so sorry you need to be here. It is hard on an adult and terable to hear this has gotten to a 4 year old. I have very little knowledge on this one but there have been a few that did have this but I don't know if they still post. Many when they beat this will drift away. My thoughts and prayers go out to you and your family.

    It is a rough road to go down and docters say that Head & Neck is the 2nd hardest to have, but it has good results.

    Bill

  • rcaulder
    rcaulder Member Posts: 70
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    Prayers

    Sorry I can't offer much information on this cancer, I can only offer my heart and prayers for Hudson . All things are possible with God.  

  • avisemi
    avisemi Member Posts: 172
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    Juli,
    sorry I don't have any

    Juli,

    sorry I don't have any info either.  Though, please know we are here to support you even if all we can do is listen, pray, write an encouraging word. I'll pray for Hudson every day for complete healing and for you for much grace, support and strength. 

    When my husband was diagnosed last year there was a particular Bible verse that helped me a lot. I don't even know what book it is from but it goes something like this: for You are the fountain of life. In Your light we see light.  No matter what anyone says, I hope you can see life and healing in faith.  

  • Bsauls94518
    Bsauls94518 Member Posts: 32
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    ENB

     I am so sorry to hear this has happend to a child.  I was recently diagnosed with stage 1 ENB.  It was caught early and surgery is the first step for me.  Since it is a rare cancer there really isn't a lot of information out there.  As I understand there have been about 1k cases reported since 1924 so not much is known about causes and best treatement plans.  From what I have found MD Anderson in Texas and  UPMC seem to be the most up to date on treatements.  I have Kaiser and they referred my case to the tumor board for review and treatment options.  I have been in touch with a survivor that is on these boards sometimes and she is doing well after her treatment.  I am a newbie here and unfortunatley don't have much insight to provide but will be here to provide any help I can.  Stay positive and know that this will pass.  Lean on those here on the boards that have survived. You will find wisdom and  support in the strangest places and from those you really never thought would be there for your family.  I have a whole new tribe surrounding me, it's one of those silver linings that come with adversity.  I am reading about diet and any natural treatments to supplement my doctors treatment options.  I don't know if it will be helpful but don't see how eating a better diet, exercising and being positive could hurt. I am keeping Hudson in my thoughts and sending healing energy his way.  

  • swopoe
    swopoe Member Posts: 492
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    Sending my prayers to your

    Sending my prayers to your sweet Hudson. 

  • MrsBD
    MrsBD Member Posts: 617 Member
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    4 Year Old

    It's so difficult as a mom to watch your child go through something like this. My heart aches for you and I will keep your family in my prayers. 

  • Harleygirl123
    Harleygirl123 Member Posts: 4
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    I am a 3 year survivor.  I

    I am a 3 year survivor.  I would be happy to answer any questions you might have. I was stage II and underwent a cranial fascial resection tumor removal at Mayo in Rochester, MN in July of 2012.  No chemo or radiation.  Scanning with MRI post surgery every 6 months.

  • Harleygirl123
    Harleygirl123 Member Posts: 4
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    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 !!

  • wmc
    wmc Member Posts: 1,804
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    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 !!

    Her last log on was Nov 05

    I too was looking for any update and have been checking for just some hope. I think you could give her a lot of encouragement. I'll keep checking on this too.

    Bill

  • Hudson's mom
    Hudson's mom Member Posts: 15
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    wmc said:

    Welcome to the H&N Group

    Welcome to the H&N, and so sorry you need to be here. It is hard on an adult and terable to hear this has gotten to a 4 year old. I have very little knowledge on this one but there have been a few that did have this but I don't know if they still post. Many when they beat this will drift away. My thoughts and prayers go out to you and your family.

    It is a rough road to go down and docters say that Head & Neck is the 2nd hardest to have, but it has good results.

    Bill

    Thank you Bill for the post!

    Thank you Bill for the post! Hudson just had surgery to remove the tumor. We are looking at radiation as our next step as chemo did not work at all. We are still in the PICU and should be able to venture home in a couple of days. Thank you for your support 

  • Hudson's mom
    Hudson's mom Member Posts: 15
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    rcaulder said:

    Prayers

    Sorry I can't offer much information on this cancer, I can only offer my heart and prayers for Hudson . All things are possible with God.  

    Thank you for your prayers.

    Thank you for your prayers. We did receive a miracle last tuseday. The surgeins were able to remove Hudson tumor, repair the dura, cranial bone and eye socket that the tumor broke. And..... He still has his left eye. We will know later today how the optic nerve looks. Thank you for your prayers! 

  • Hudson's mom
    Hudson's mom Member Posts: 15
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    Barbaraek said:

    Juli

    I'm sorry that you and your family are fighting this disease. Cancer in so evil. I don't know about olfactory neuroblastomas, but there are many different chemotherapy agents and regimens out there. I'll add my prayers that the doctors working with you find the best one to help Hudson.

    Barbara

    Thank you for the prayers. I

    Thank you for the prayers. I posted in an early reply how lucky and blessed we truly were with the amazing surgerons and the mira

  • Hudson's mom
    Hudson's mom Member Posts: 15
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    Thank you for the prayers. I

    Thank you for the prayers. I posted in an early reply how lucky and blessed we truly were with the amazing surgerons and the mira

    Miracle they performed.

    Miracle they performed. Hudson is recovering now in the PICU and we are waiting to hear what he plan for radiation is going to be. 

  • Hudson's mom
    Hudson's mom Member Posts: 15
    Options

    Sorry to hear this. It's

    Sorry to hear this. It's really tough to have a four year old to go through this. I have no knowledge on this particular c, but if radiation becomes an option, you can consider proton therapy which is said to have much benefits for pediatrician.

    God bless!

    Thank you for the post. We

    Thank you for the post. We are currently waiting to hear today what the radiation game plan is. Since Hudson was diagnosed I have been doing hours and hours of research. I agree that proton beam therapy since to be beneficial then other types. We have discussed this Hudson's team and his case is going to be represented on the tumor board today. If we agree to proton beam I hear. Md Anderson is leading the way. Have you heard of which hospital is better? We live in 

  • Hudson's mom
    Hudson's mom Member Posts: 15
    Options

    Thank you for the post. We

    Thank you for the post. We are currently waiting to hear today what the radiation game plan is. Since Hudson was diagnosed I have been doing hours and hours of research. I agree that proton beam therapy since to be beneficial then other types. We have discussed this Hudson's team and his case is going to be represented on the tumor board today. If we agree to proton beam I hear. Md Anderson is leading the way. Have you heard of which hospital is better? We live in 

    Northern ca. We of course are

    Northern ca. We of course are willing to travel anywhere to get him the best care. If anyone can give insight to radiation, side effects what to prepare for etc. That would be great. The better prepared I am the better 

  • Hudson's mom
    Hudson's mom Member Posts: 15
    Options

    ENB

     I am so sorry to hear this has happend to a child.  I was recently diagnosed with stage 1 ENB.  It was caught early and surgery is the first step for me.  Since it is a rare cancer there really isn't a lot of information out there.  As I understand there have been about 1k cases reported since 1924 so not much is known about causes and best treatement plans.  From what I have found MD Anderson in Texas and  UPMC seem to be the most up to date on treatements.  I have Kaiser and they referred my case to the tumor board for review and treatment options.  I have been in touch with a survivor that is on these boards sometimes and she is doing well after her treatment.  I am a newbie here and unfortunatley don't have much insight to provide but will be here to provide any help I can.  Stay positive and know that this will pass.  Lean on those here on the boards that have survived. You will find wisdom and  support in the strangest places and from those you really never thought would be there for your family.  I have a whole new tribe surrounding me, it's one of those silver linings that come with adversity.  I am reading about diet and any natural treatments to supplement my doctors treatment options.  I don't know if it will be helpful but don't see how eating a better diet, exercising and being positive could hurt. I am keeping Hudson in my thoughts and sending healing energy his way.  

    Thank you for supportive

    Thank you for supportive email. I'm sorry that you too have to experience this as well. I agree with eating healthy, staying positive and having faith. We did receive a miracle last week and hope to hav

  • Hudson's mom
    Hudson's mom Member Posts: 15
    Options

    Thank you for supportive

    Thank you for supportive email. I'm sorry that you too have to experience this as well. I agree with eating healthy, staying positive and having faith. We did receive a miracle last week and hope to hav

    Have a game plan for

    Have a game plan for radiation this week. We are looking at md anderson for proton beam therapY. Once we have a plan I need to call in the family troops to help support taking care of Hudson's twin brother, Hunter and also help in tx. I have been beyond blessed with family, friend and community support. Thank you for yours! 

     

    How are you doing with your treatment.