My son with NB4, please help me save him...
 

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09-27-08 08:15 AM
Sunil Nair
My son with NB4, please help me save him...
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Hi Everybody,

I am Sunil Nair, basically from India and working in Dubai, UAE. My son who is 2 yrs and 11 months old has been recently diagonized with Neuroblastoma Stage 4. He was diagonized during the first off of september, 2008, from then on our whole world has turned upside down. My wife and I are in a traumatic condition,, not sure where to go and what to do. He is currently undergoing treatment in Cancer Institute (WIA) in chennai, India. They have just completed his first cycle of Chemotherapy.

Can somebody help me and let me know as to where we can go for some help. I have spoken to a few doctors in Children's Memorial Hospital, Chicago, MD Anderson Cancer institute, Texas. Everyone say that there is only 30 - 40% chance of survival. Moreover, we do not have any nsurance cover and the cost for the treatment is way beyond our reach. Please let me know if there is any charity organization, where I can try requesting for some funds.

Hope to hear from sombody

Regards

Sunil Nair 

 

10-13-08 02:49 AM
hope_4life
Re: My son with NB4, please help me save him...
Reply

hi Sunil,

I am also from India, my 5 yr old cousin, has been diagnosed with nb stage 4 last week. He is at WIA, chennai and we are also looking for better options.. please let me know, if u have any information.

Thanks

10-13-08 04:35 AM
Sunil Nair
Re: My son with NB4, please help me save him...
Reply

Hi,

My son is also admitted at the WIA, Chennai. This is the best hospital for cancer in South India, the other one is Tata Memorial Hospital. I have spoken to a few doctors over there too. They say that their initial treatment like chemo is the same as being followed by WIA. The only option all doctors have given is that he should respond to the chemotherapy, which we will know only after 3-4 cycles of chemo. Only after completion can we slook at other options like Tata or abroad.

Bu I am still trying. I am also getting into homeo and ayurvedic. I would try and do anything that has a chance of saving him. Will surely let you know once I have any lead in this matter. Similarly do let me know once you know anything.

All the best and my prayers for your cousin. 

Regards

 

10-13-08 11:56 PM
hope_4life
Re: My son with NB4, please help me save him...
Reply

Hi

Thanks for the info. Will let you know of any development. Is your son, there as outpatient/inpatient. My cousin is there as inpatient , he had taken 1 cycle of chemo in hyderabad, after which we came to chennai. His next chemo would be on 21st of this month. Hope he responds well

My prayers for your son..

Regards

Deepthi

 

10-15-08 03:31 AM
Sunil Nair
Re: My son with NB4, please help me save him...
Reply

Hi Deepthi,

My son is also there as an in-patient since 9th of sept.  He has completed his first cycle of chemo, now he is undergoing his 2nd cycle. But he has had a few other complications. He has a Tumor near his chest, due to which there is a fluid accumulation near his lungs. They did a surgery a days back to drain the fluid out, but the fluid kept on coming. Now, it seems you are not supposed to do chemo when you are draining the fluid as it could lead to severe infections, but the doctors had no choice and so went ahead with the chemo. So the next couple of weeks are very crucial for him. the fluid needs to decrease and he need to come out without any major side effects. So we are praying hard and hoping for the best.

Who is the doctor who is treating your cousin. Dr. Sagar is the one in-charge of my son. Dr. Arun and Dr Lakshmi are the other assistant doctors who are treating him on a daily basis.

I can clearly understad what the parents of your cousin are going through, it is very traumatic, please give them all the support you can. Will pray for your cousin too. this is a dreaded disease and the family needs all the prayers and support.

Regards

Sunil 

 

 

10-16-08 02:52 AM
hope_4life
Re: My son with NB4, please help me save him...
Reply

Hi Sunil,

my cousin also has tumor in the chest, and had some fluid in the lungs, they havent done any surgery, but had removed the fluid, the next chemo is due on 21st, provided he is progressing well wrt the treatment for lung infection. He is very weak, and i wonder, how he can withstand the treatment.

Dr Lakshmi has been taking care of him and she is the person communicating everything to my aunt and uncle . My aunt is not aware of the other doctors names.

My aunt and uncle, can speak telugu only .This has become a little hurdle, but they are managing somehow. We want to rent an apartment/house in chennai as soon as they confirm the schedule for the chemo.

It would be great, if you could message me your phone number, i can meet you when i come to chennai . I am messaging you my number.

Its the worst thing, that has ever happened to our family. And we are giving all the support we can to my aunt and uncle.

My prayers for your son. Hope he gets along with the chemo well. You can check the following link- http://www.mskcc.org/mskcc/html/81593.cfm

Its gives me some hope, whenever i read it.

 

03-11-09 05:05 PM
shruti
Re: My son with NB4, please help me save him...
Reply

Hi,

How is your son doing now? My name is shruti  my 5 yr old son Eshan has neuroblastoma. We r in US my husband works here in software field his name is amit. Eshan was diagnosed on july 4th 2008. He received his initial treatment in Richmond VA at VCU medical center. After that we moved him to Memorial Sloan Kettering cancer hospital in New York. He went through surgery and 6th cycle of chemo here. Now he is going through immunotherapy which is Molcolonal Antibodies treatment. It is only done here in memorial sloan. It does not have any bad side effects as the chemo, but the main side effect which it does have is pain during the treatment, but the nurses here do a great job of managing the pain. Memorial Sloan have there own protocol. They don't do the double transplant which is the common treatment plan for high risk neuroblastoma. Memorial Sloan is the best hospital for this diseas they have the latest treatment options. Finiancially i know it is very difficult to manage here,we r also applying for financial assistance in here. Please let us know if we can be helpfull to you in anyway.

Thanks

 

03-12-09 08:45 PM
maria.l
Re: My son with NB4, please help me save him...
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Hello. My name is Maria. My daughter was diagnosed with stage IV Neuroblastoma when she was one and a half years old.  She had fluid in her lungs, and actually the tumor had collapsed her lung from the amount of fluid it was secreating.  She had a chest tube to drain it.  She was staged and her N-myc was amplified, and histology was unfavorable.  All the worst case senarios that you do not want.  Anyway, I had taking her to Columbia Presbyterian Hospital in New York.  Dr Yamashiro is the leading doctor for Neuroblastoma.  They suggested a clinical trial for my daughter since she was so advanced.  Her primary tumor was around her heart and invaiding into her rib cage.  She had a secondary tumor in her lower spine.  Her cancer had also metastisized into her bone marrow.  She was given almost six months of chemotherapy, followed by surgery.  She had a stem cell and a bone marrow transplant, then radiation.  This seems extreme, but so is this cancer depending on your childs stage, and n-myc gene, and histology.  I am a registered nurse, so I can follow the terminology, but it can be very overwhelming.  We were inpatient for about two years.  I highly recomend Dr Yamashiro, and Columbia Presby.  The other hospital we were first at wanted to operate right away.  Because of this cancer being so aggresive, sometimes if you operate first without chemo the tumor can spread more rapidly, and cause more harm.  As a mother who was in your shoes, I recomend you research, and get second opinions.  I could write a novel on what we've been through, and what my daughter had to face.  I would be glad to answer any question you may have.  All the best to your family, and I'll pray for your son.