NB stage 3?
 

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11-17-08 04:24 PM
kcbradley05
NB stage 3?
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My 8 month old son was just diagnosed with Neuroblastoma stage 3 (no cancer in the bone, bone marrow, or lymph nodes). We just finished our first chemotherapy treatment and are home for a few weeks before we go back for another cycle of the chemo. I was wondering if there was anyone else that has gone through this with there child and would be willing to talk to me about what should be expected and things that helped you to cope. Thanks-Katie
11-17-08 09:48 PM
Ginger
Re: NB stage 3?
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Hi Katie!

My name is Ginger and my daughter, Alyssa, was diagnosed with stage IV NB in Feb, 2008. I am willing to talk with you about things that we have been through during this process although our situations may be a little different because your son is not stage IV. If you would like to check out her story you may do so at www.caringbridge.org/visit/alyssaboyd or you may email me directly at glboydhotmom@yahoo.com. Looking forward to talking to you if I can help!

Ginger

11-18-08 06:20 AM
mdungan
Re: NB stage 3?
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Katie,I am so sorry that you and your son have had to step into the neuroblastoma world.  I remember how I felt before and after my daughter?s first round of chemo vividly.  It was a horrible and gut wrenching time.  The one thing I can tell you is that life does get better.  It will return.  You (and he) will get there.   Children with stage 3 can have different levels of risk. I would assume that given his age he is probably not high risk.   Do you know if he was categorized as high or intermediate risk.  I ask because there is a huge difference in treatment between the two.   My daughter was diagnosed with stage 4 neuroblastoma in June of 2003.  She was high risk so her treatment may have been very different than what your son will receive.  However, I am happy to say that she is currently enjoying the 1st grade.  She is whole and smart as a whip.  In fact, I just got her report card last night and she received straight As (Sorry, I am a dad - I have to brag a little.)  I tell you this just so you know that even though you are in the midst of the battle there is hope and light at the end of the tunnel.  I know of several stage 3s that have been diagnosed throughout the years and would be glad to put you in touch with them.  But I think it is important to know which risk level your son is first.  Your son?s treatment will also depend on where he is being treated.  Different countries have different protocols and even some institutions throughout the US follow very different protocols.  Please let me know if there is anything I can do.  Feel free to write me at mdungan@lunchforlife.org or call at 817-846-6085 if you would like to talk directly.With hope,Mark Dungan

 

11-20-08 11:23 PM
cherieaimee
Re: NB stage 3?
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Hi, Katie,

My son Will was just diagnosed with Stage 2b (no cancer in the bone or bone marrow, but they did find cancer in the lymph nodes right next to his tumor) His is Intermediate phase. 

Tomorrow is our first day of chemo, so your post caught my eye.  Being such a newbee, I'm not sure I'd be much help to you.  The best advice I have had so far is to create a CaringBridge site to keep friends and family up to date.  As I read the notes our friends and family - and even people we don't know - are posting, I can't help but feel hopeful.  I believe in God and in miracles.  The Caring Bridge site is a great way to bring people together to make a miracle of your own.  I wish you and your son the best and will remember you in our prayers tonight. God bless.

  - Cherie Ryan

11-22-08 06:24 PM
Katy
Re: NB stage 3?
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Hi, Katie - sorry to welcome you to the club.  :(

I have a bouncing bubbly HEALTHY toddler who was diagnosed/treated in infancy.  Do a search for my posts with your default set to the beginning of time and you read right along with everything I experienced during our stage III intermediate risk protocol.  At the time it was the standard treatment protocol for the COG hospitals but that was 2 years ago & it has changed a bit.  Are you stage III?  If not, at least my baby tips thread should help. 

Don't get stuck on the protocol...they are just guides.  Your little one will set his own timeline with regard to when he's ready to bounce back from chemo and start his next round.  Set backs and changes become the norm.  Be prepared to live near the hospital (within an hour of) for the next few months.  It stinks, but trust me...treatment now is easier with a baby then treatment with a toddler. I'm hopeful you caught it early.  :)

In general though, we adhered to the timeline.  The first round of chemo meds may be different from subsequent rounds so the level of nausea and neutropenia may vary.  You'll start to detect a pattern though so keep notes so you can try to prevent the nausea with the zofran. 

Stock up on onesies to contain central lines and hard plastic toys/board books that can be wiped easily with a bleach wipe.  Your baby will amaze you...he'll still want to play and cuddle and giggle.  He'll give you strength.  BEST wishes!

 

11-28-08 02:03 AM
roneandkatie
Re: NB stage 3?
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Katie I have just found this web site and read your posting . I am currently sitting in the hospital and my son is in a crib next to me getting his chemo for only the second day. My son  is 9 months old  stage 4 nueroblastoma nmyc non amplified. It has spread to his head and arms and legs . A persistent fever  brought us to the hospital and after days of tests we were notified he had nb. Please know you are not alone . When we pray for our son we also pray for your son.  rone and katie in california.

12-08-08 08:42 PM
dawnie
Re: NB stage 3?
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Hi Katie!  Mom to a toddler who was diagnosed stage three high risk, here, and I would love to chat with you too.  You can contact me through this board and I'll gladly give you my email and our Super Hero's care page if you like!  Best wishes and prayers for you and your sweet baby!