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neuroblastoma

Y-ME
Posts: 2
Joined: Mar 2010

hi
my son (3.5 yrs) was diagnosed with stage 4 neuroblastoma earlier this week. the surgery was today and it looks like he will start Chemo sometime this coming weekend.
is there anyone out there that is facing the same stuff (or has been)?
Also looking to hear from parents of survivors (with similar staging/age)
thank you

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Hello! I am so very sorry to hear of your child's brain tumor.
My niece has a one year old daughter, Avery, who was diagnosed with neuroblastoma at Kansas City Mercy Children's hospital in January 2010.
My niece, Jennifer Christiansen, and dear little Avery Anne are at St. Jude's Research Hospital in Memphis now. They got to St Jude's within 3 weeks of Avery's initial surgery. I say initial because after the first surgery to remove the tumor, Avery's shunt got infected and she needed to have it removed and then 5 days later it was reinserted.

If you would like to talk to my niece about your son and experince she would be happy to talk with you. Do you have Skype access on your computer? I just Skyped Jennifer this evening. Jennifer has a website blog at www.averychristiansen@blogspot.com

Avery is finishing her 4th chemo round. She will be going to Jacksonville, Florida for proton beam radiation for 6 weeks and then back to St Jude's.
Please let me know if you want to talk to Jennifer. Only someone who has had a child with neuroblastoma could possibly begin to understand what you are going through.

Avery was diagnosed in early January 2010. Also know that when she got to St. Jude's it was St. Jude's opinion that Avery's stage was not a advanced as Mercy Hospital diagnosed it at. St. Jude's accepts all children regardless of payment or insurance. Most hosptials
and oncologists have little to no experience with neuroblastoma in very young children.
It is the fight of your life and you will do better if you can talk to others who have naviagated and researched where the most experienced doctors and nurses are. I am a uterine cancer survivor...3 months post chemo and radition...and thought I would check this site due to my great niece having neuroblastoma. Also I am an RN so know a little bit about some medical things. (smile) I will keep you and our beloved son in my prayers.
Lori

jzeglin8
Posts: 2
Joined: Apr 2010

Y - Me,

I am so sorry to hear your son has been diagnosed. It is probably the worst feeling in the world to have a child go through something like this and feel so helpless. My daughter Avery is just now 15 months old and was diagnosed with Medulablastoma in December at 11 months. We decided after the surgery to remove the golf ball sized tumor to take her to St Jude in Memphis, TN. At St Jude they work with all types of childhood cancers including the neuroblastoma. They currently have a protocol for that type and it is worth investigation. St Jude is a great place and the only place to be with a child with cancer. Take a look at the website.

My husband and I are from Kansas City and decided to take Avery to St Jude for care which meant me leaving home and work for 8 months....but it is well worth it. They take fantastic care of your child, provide housing and transportation, and really know how to fight this battle with you. I am not as familiar with the neuroblastoma prognosis, but there are at least 2 families here right now going through the same thing as you. Take a look at the website and feel free to ask me any questions you might have about anything.

We'll be praying for you and your family as you embark on this long journey...just remember you are not alone in this fight!

Jenn

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Jenn,
I must have chemo brain as I was thinking of medulablastoma and didn't recognize neuroblastoma. Sorry about that... none the less I think that any parent with a child that has a brain tumor would appreciate the opportunity to talk to another.
Lori

Y-ME
Posts: 2
Joined: Mar 2010

Hi
Thank you both for the kind words. we're still in the madness of the 1st week. 3 days into chemo. so far we're ok. lot's of technical issues to deal with (have 2 more kids at home)...
not really sure where we are (emotionally) at this point in time. but wanted you to know that we really appreciate your responses.

Mel Mikulak
Posts: 7
Joined: May 2010

Hi Y-Me,

I know your pain. We found a great online resource at www.ACOR.org (American Cancer Online Resources). You'll need to subscribe to the N-Blast list.

You will find hundreds of parents there from all over the USA (and the world) who ask and answer questions specifically about neuroblastoma. They know all the specialty NB doctors, newest treatments available, etc. It is the best resource out there for NB input.

If you post a question, you will receive answers immediately. Let them know what hospital you're at, what treatment plan you're on, etc. You won't find a better support group anywhere!

I know you're going through a crazy time right now - the first couple of weeks are the worst. Don't forget to breathe and be flexible with your time. Cancer doesn't have a schedule that it seems to keep to.

You and your family will do great,
Melissa

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