Four Year Old with Neuroblastoma

Best chance of survival- St. Judes Hospital. J., I will add you friends daughter to my prayer list. God Bless her.

My prayers go out to your friend and their daughter. My cusin was diagnosed with this when he was 13 years old. He went through surgery to remove the tumor. He had a lot of therapy and had to re-learn how to talk due to the location of the tumor. It was very difficult for him, and still is at times. Due to the surgery the doctors told him he could never be in sports such as basketball, football, go tubing etcetera. Anything where he could hit his head could cause major problems. IT was very hard for him to be a kid because of this. Especiall since my uncle and aunt were very protective. But he is healthy now and took up golfing. He actually ended up getting a full ride golfing for a college in montana. I with them the best, and it is a very VERY long road they will go through, but good things can and will happen. My prayers are with them.

Neuroblastoma is not often primarily located in the brain; it is usually an abdominal tumor (adrenal) which can metastasize to other locations (primarily lymph nodes and bone marrow). Neuroblastoma is staged based on several criteria (biology of the tumor, size of tumor, patient age etc.). If your friend's daughter is 4 and has "advanced" neuroblastoma she is probably high risk. Treatment will most likely include surgery, chemotherapy, stem cell transplant (autologous, meaning the patient will "donate" her own stem cells) and radiation. The treatment is extensive, but there has been an improvement in overall survival for patients' with this disease. As such, I would highly recommend your friend consult Sue Cohn at the University of Chicago. She is a leading expert in the treatment of this disease and is an amazing woman and doctor. Sue Cohn is absolutely the foremost expert and she is who I would want as my doctor if my child had this disease. Please wish your friend the best of luck.

A niece of a friend of mine also has neuroblastoma. I'm not very familiar with the disease, but she has a website: annabanana.org . It has information on what she is going through and could possibly give your friend some peace and understanding. Good luck to your friend and her daughter. They will be in my prayers.

Hi J.,
I ditto what Molly said; I'm a pediatric nurse for 15 yrs at Children's and 7 of those yrs were on the Oncology floor. Dr. Susan Cohn was the expert at Children's on this disease so I would definately send your friend to her. It will be a long road and I will keep them in my prayers! C. E

My thoughts and prayers and plenty of hugs sent your way and theirs. Here is link with good info about what it is etc.
http://www.cancer.gov/cancertopics/types/neuroblastoma

Linda

Oh my god!! My heart and thoughts and prayers go out to your freinds daughter and family at this time. I have a special place in my heart for families go through this...as my family went through this with my brother 14 years ago, unfortunately we lost him, but that had more to do with the location of the tumor than anything else from what I understand of the situation, and from my understanding of cancers of the brain in general. Location of the tumor is is what palys a big determing factor in treatment, and type of treatment. Obviously they will always try to remove it if at all possible. They have made great advances in cancer treatment since my brother was diagnosed. How old is she? Loola was very kind to my brother and my family, and gave him the best treatment possible to keep him as comfortable as possible, and give him as much quality of life as possible. I would also check out www.mayoclinic.org and see if there are any new trials, or treatments for this type of cancer going on. Check out CHildren's Memorial here in Chicago, or John Hopkins center. Most of all, do not loose hope. While my brother was ill, there was a woman my grandmother was freinds with, whose son was 18 and they had diagnosed him with advanced throat cancer, they basically gave the family no false hope, well guess what? He survived, and as far as I know is doing well. I truly beleive that hope is the best thing we can give our loved ones in situations like these. Just be there for your friend and her family in anyway that you can, whether
it is to pick up her other kids from school one day if she has any, or make some dinners for her, listen, listen, listen. Just be there. Once again, my prayers go out to her daughter, and I will HOPE for her :)Take care.

hi J.,

I will say a pray that you and your family will beat the odds. I dont know anything about this condition. but you have my deepest concern. Please follow the link for strength in you time of need.
http://fightingthebattle.ning.com/