Just Dianosed IV Nerublastoma 26th March w/ my 2 year old son -Am I in the right hospital
 

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04-02-09 12:54 AM
Kenneth
Just Dianosed IV Nerublastoma 26th March w/ my 2 year old son -Am I in the right hospital
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We were just diagnosed on the 26th of March . My Son turned 2 the next day WOW. We were looking into Sloan Kettering Memorial in NY . We have found they are the best and have specialists of course there is insurance red tape.. We are currently in Florida Hospital South - We are somewhat reassured by doctor Hajjar but we want feedback we cant find anything anywhere. How Ironic one of our close friends lost there son to the same Doctor or Hospital same diagnosis three years ago but his tumor was a midline one which caused problems. We just started chemo yesterday on my wifes birthday what a month . It seems to be going good we have had one transfusion so far which I guess is abnormal ? We are supposed to meet or talk to Brain Kushner in NY next week . We just wanted to know if someone could recommend a Florida Specialist or if they have used our doctor/ hospital etc. As you can imagine we want to get this right the first time also they do not offer the Antibodies which are on suspension from the COG .

What do you think ?

 

Ken

youragentkenneth@yahoo.com

04-02-09 09:36 AM
PunkinsMommy
Re: Just Dianosed IV Nerublastoma 26th March w/ my 2 year old son -Am I in the right hospital
Reply

Ken-

 Our 8 month old daughter was diagnosed on March 9, Stage 3.  We are working with Dr. Sutphin at the MD Anderson Peds Oncology through Arnold Palmer Hospital in Orlando.  We feel that we are receiving superior care for her.  They have been thorough, compassionate, have explained things very well.  And APH Hem/Onc Nursing is second to none!  Peds Onc phone is 321-841-8588.  My prayers are with you and your family.

Angela

04-02-09 10:29 AM
Kenneth
Re: Just Dianosed IV Nerublastoma 26th March w/ my 2 year old son -Am I in the right hospital
Reply

Thanks for your help - We were hoping to find a specialist - we have been misdiagnosed for the last month until now it is hard to trust anyone . We will look into it.

Thanks again

04-02-09 11:24 AM
PunkinsMommy
Re: Just Dianosed IV Nerublastoma 26th March w/ my 2 year old son -Am I in the right hospital
Reply

You are not alone!  We were misdiagnosed for 6 months.  Our daughter had a mass on the left side of her neck that first became noticeable when she had a case of the sniffles.  The pediatrician said that it was normal for one lymph node to be larger, and not to worry.  When the lump grew, he sent us to a ped surgeon, who diagnosed as Torticullis (scar tissue on the neck muscle).  When the mass continued to grow despite physical therapy, he sent us for a second CT scan.  They scheduled the biopsy 3 days later, and we FINALLY had the correct diagnosis of Neuroblastoma.  We started the internet research (which is a good and bad thing!), and found Neuroblastoma is frequently misdiagnosed.  It's rare, often has little to no symptoms (that would be us - our daughter is other wise a very healthy thriving little girl), or masquerades as a long list of other diseases.  Try not to fault the doctors.  This is one tough to find disease. 

 I wish your family well. 

04-02-09 07:52 PM
nancytar
Re: Just Dianosed IV Nerublastoma 26th March w/ my 2 year old son -Am I in the right hospital
Reply

 Hi Ken

My grandaughter, 4 yrs old, is Stage IV and was diagnosed on 1/4/09-her mother's 40th birthday so I know what you are feeling. Like you, we did much research and soul-searching to find right doctors and hospitals. COG hospitals are very good - use the accepted protocols. Sloan Kettering has been using antibodies for years - so they are experts in that area. However, COG study - ch14.18, that has been put on hold, verifies what MSKCC has been saying.

We elected to do what some other families have done - stay at our closest COG because of access-and get antibodies later. This has proven to be wise so far - when counts are low and platelets and transfusions are needed, it is easier to get to the COG hospital. We want the best of both worlds - close access of hospital and addition of antibodies. However, after talking w/drs about ch14.18 study, their belief is that the hold is brief and it will be available for patients soon.

Talking to MSKCC is a very good idea because their protocols are different concerning transplant. If you do research on this site, Mark Dungan has done an amazing job of giving all that information about antibodies and transplants here. Talking to MSKCC and your local COG hospital will help you to decide. I do want to offer you encouragement - in January we felt as if our whole world had been rocked. But after seeing what is happening in this field, I have hope. My grandaughter is doing well w/her treatments. If I can ever be of any more help, please let me know.

With hope

Nancytar

04-16-09 07:07 PM
Kenneth
Re: Just Dianosed IV Nerublastoma 26th March w/ my 2 year old son -Am I in the right hospital
Reply

Thank you all again for writing - Yes we are on the COG at Florida South - I spoke to Dr Kushner at Sloan in NY and he says we are in good hands they have a different protocol totally but we are on ANBL0532 .I'd imagine everyone on COG is using this now . They Don't do the transplant  at sloan at all which is something to think about . They have the antibody which once we make it there I will most likely take part in . I know understand the transplant and I'm not sure we will go through with it we'll see . please let me know  on your progress if your using same protocol . How Big are your tumors ? where ? Is there more than one ? Lets keep each onther informed as much as possible feel free to email I dont check this site alot.

 Ken

youragentkenneth@yahoo.com