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Dear Kerry,
Thank you so much for taking the time to reply.
It is true that things are very difficult here at the hospital but my hopes are high - I know that Ifigeneia will make it - after all, 35% of children with neuroblastoma stage 4 are completely cured, why shouldn't it be Ifigeneia, she has done so well so far.
As for neuroblastoma, it is a very rare form of childhood cancer and the more advanced the stage the higher the risk - stage four is also called high risk neuroblastoma. There are many interesting links on the net to search for information on neuroblastoma and other forms of cancer - the American Cancer Society (cancer.org), New Advances in Neuroblastoma Treatment (nant.org) e.t.c.
Being an oncologist is very difficult I can assure you, but then again all jobs are.
thanks again,
Betty
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Re: Neuroblastoma
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Posted by: nyceeg
Posted: 11-13-2009
in the Neuroblastoma forum.
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Hi,
Was searching for more information on Nueroblastoma. Our son Steven was dx, this year, he just turned 21 last month. I have been told as rare as Neuroblastoma is.. It's almost ...
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Hi,
Was searching for more information on Nueroblastoma. Our son Steven was dx, this year, he just turned 21 last month. I have been told as rare as Neuroblastoma is.. It's almost never found in young adults. We live in the suburbs of Chicago. Steven goes to the Unneristy of Chicago, Comer's Chilren's Hosptial.We just had update scans, no change in cancer. The only change he did have was it spread ( after 2nd chemo ) to his brain. He was able to have that tumor removed. After 7 months of treatment we now we are on to clinical trials. Hope this works. Wondering if there is anyone else out there like us. Also begin trying to find some financial help. Since Steven can no longer work, and the costs of his care. It's been hard. We have been unable to find any charity that will help us....Why becuase of Steven's age. Yes he has a childrens cancer, but no-one will help him becuase he's over 18yrs of age ???( Even make a wish is for only under 18.)
Make us feel even more alone, other famlies with nueroblastoma get help and support ...not us...at least none we know of
Please feel free to visit Steven's caringbridge page.
Thanks for listening
Denise
http://www.caringbridge.org/visit/wwwcaringbridgeorgvisitstevengoyackjr
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Re: Neuroblastoma
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Posted by: handle
Posted: 05-27-2006
in the Introduce Yourself forum.
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Hi Shelly, My daughter who's 2Yrs Old was diagnosed with stage 4 Neuroblastoma in December 2005 at Westmead Childrens Hospital.
Its been around 7 months of Kemo and in mid June they ...
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Hi Shelly, My daughter who's 2Yrs Old was diagnosed with stage 4 Neuroblastoma in December 2005 at Westmead Childrens Hospital.
Its been around 7 months of Kemo and in mid June they want to do BMT.
I was just wondering how your son is doing and if every thing went well.
Mum Rema.
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Hi Bridget and Domenic,
I am a student of Cytotechnology at State University of New York at Stony Brook. I am writing a report on Adult Neuroblastoma for a junior year course intended to educate myself as well as other members of the public about Adult Neuroblastoma as well as treatments and support groups available to you. But, anything you are willing to share with me is appreciated and will be treated with the utmost respect. If you choose not to I totally respect your decision and wish you the best of luck.
Thank You
James
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Re: Neuroblastoma
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Posted by: DarceyM
Posted: 09-28-2005
in the Introduce Yourself forum.
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Hi everyone!
This is my first time on here, I keep seeing the commercials on TV so I figured I would give it a shot.
Very similar to Spririt, my daughter is a survivor of ...
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Hi everyone!
This is my first time on here, I keep seeing the commercials on TV so I figured I would give it a shot.
Very similar to Spririt, my daughter is a survivor of Neuroblastoma, stage III, was diagnosed at the tender age of 5 months, and now is 14 and a freshman in HS. She too has had the spine surgery and a couple of other side effects, but in the overall scheme of things, she is great.
We were lucky in that we didnt have to have the BMT, but we went through it with a lot of the other families, I just want everyone to know , who is going through it now, that there is a light at the end of the tunnel and Neuroblastoma is a cureable creature.
I will be happy to talk to anyone that needs to.
God Bless
Darcey
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Hello Betty! My name is Kerry and I'm sure you're very anxious about your daughter and being in the hospital so I thought it would be nice to give you someone to talk to You afterall said you were going to go crazy without the computer. I really hope your daughter and you can go home What exactly is neuroblastoma? Someday I would like to be an oncologist and I would like as much info as I can get!!!!! If you would like to talk sometime you can email me at pickles061@aol.com
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Dear Stratos,
I am the mother of a 3 year old diagnosed in May with stage 4 neuroblastoma. I am sorry to hear about your little niece. which stage is she?
We live in Athens and I can assure you that everything that you are trying to do now I have already done in May. there aren't better hospitals outside of Greece - e.g. in the States or in Europe. besides the treatment protocols are now almost identical both in th states or in EUrope. Listen to your doctors, do what they tell you. ( we chose to stay in Athens and be near our family for support and help). Sorry for my english but I couldnot spell anything in Greenglish!!!
dont hesitate to contact me. ( we are currently having a bone marrow transplant at Agia Sofia)
Love,
Betty
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Re: Adult Neuroblastoma
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Posted by: Stratos
Posted: 08-17-2006
in the Introduce Yourself forum.
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Dear Domenic,
My niece diagnosed NEUROBLASTOMA yesterday.
I am totaly shocked because I have two kids. A son 3 months y.o and a daughter 7 y.o.
Waste of time is nothing when you are ...
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Dear Domenic,
My niece diagnosed NEUROBLASTOMA yesterday.
I am totaly shocked because I have two kids. A son 3 months y.o and a daughter 7 y.o.
Waste of time is nothing when you are trying to save your wife
Anything can hapen. A miracle ?? Perhaps!
You have to be strong against the beast!
This is the only case to be ok. with yourself. You have to be strong and to give all your love you can.
Be strong. Stay together! Hold her hand and make her understand that you are the one and only for her.
Be strong.
Stratos
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Re: Neuroblastoma
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Posted by: austin's mom
Posted: 06-02-2006
in the Introduce Yourself forum.
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Hi Lula,
My son Austin was diagonosed with Neuroblastoma in April 1995.
We were treated at MD Anderson in Houston.
He was a stage three, the tumor was found in his chest.
We did ...
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Hi Lula,
My son Austin was diagonosed with Neuroblastoma in April 1995.
We were treated at MD Anderson in Houston.
He was a stage three, the tumor was found in his chest.
We did not have to do the BMT, thank God, but I feel for you.
My Austin is 13 years old now and mostly a normal child.
We went through 2 surgeries and 2 rounds of chemo.
God Bless You and your baby.
Sherry
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Re: Neuroblastoma
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Posted by: garysmom
Posted: 04-06-2006
in the Introduce Yourself forum.
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hello my son Gary was diag. with stage 4 neuroblastoma on dec. 17,2003. we went through bmt and it is very scary. but you have to know with out it your cure rate is almost nell. I rember driving my ...
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hello my son Gary was diag. with stage 4 neuroblastoma on dec. 17,2003. we went through bmt and it is very scary. but you have to know with out it your cure rate is almost nell. I rember driving my son to the hospital and thinking I was a bad mom because I had an ideal of what I was about to put him through. But it was worth it. Although my son had relapsed and know is doing experimental treatment. I know that if he had not done the transplant he would not have made it this far. I would also sugg. some books to read How to prevent and treat cancer with natural med. by dr. michael murray. but talk with your doctor before trying any of the sugg. in the book. but it does have alot of foods that can help with the side effects of the chemo. lots of luck my prayers our with you and your family.
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Re: Neuroblastoma
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Posted by: ezekielshope
Posted: 10-05-2005
in the Introduce Yourself forum.
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My son he's 13 months. He 1st had neuroblastoma at 5 months. We found out 9-29 he has relapsed, both stage 3 in his neck. We have been treated at Tripler Army Medical Center. I'm ...
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My son he's 13 months. He 1st had neuroblastoma at 5 months. We found out 9-29 he has relapsed, both stage 3 in his neck. We have been treated at Tripler Army Medical Center. I'm trying to find away to get off on this island, and find other options for a cure. I have seen these replys, I really would apprecate any advice. I do hope the best for all of your children. thank you and good luck Michelle
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 hi lula, this is my first posting on here I wish we had all these sites 11 years ago when my daughter was diagnosed with stage 3 neuroblastoma, no bmt but we did 11 months o aggressive chemo, she lost some hearing and has had 2 spine surgeries. She ia Freshman in HS now and I thank God everyday she made it through. She dances and is in Theater, and and honor student, I know when she was on treatment I thought there was not alot of hope, but I will keep your child in my prayers and us "survivors" hope that if you have some questions we are here to help...... remember to find a reason to laugh and smile daily...
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Re: Neuroblastoma
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Posted by: ChristiC
Posted: 08-31-2005
in the Introduce Yourself forum.
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Hey guys, I'm glad to here that your children are doing so well. I just wanted to say that you should check out the web site of Memorial Sloan Kettering Hospital. They have a team who ...
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Hey guys, I'm glad to here that your children are doing so well. I just wanted to say that you should check out the web site of Memorial Sloan Kettering Hospital. They have a team who works with Neuroblastoma. They are doing amazing things with their 3F8 antibody treatment. I lost my son Colt in Dec. we never got to try the 3F8 because he had already relapsed before we heard about it and we were not able to get him back into remission. This disease is a beast! Don't give up! Trust in the Lord! God bless You.
Christi
Mom to Angel Colt
http://www3.caringbridge.org/tx/joeycolt/
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I agree with you totally and feel that this is an important test that should be conducted in the normal workup of newborns. My son, Carmine was diagnosed with Neuroblastoma in 2001. When my son was a newborn he had trouble eating, so they did a ultrasound to see if there was any problems with his stomach and digestive tract. They found his tumor that was on his adrenal gland when he was three days old, by pure accident. My doctor credits his recovery to the fact that he was only a infant. I have never heard of this kind of cancer, before. I think that if they don't want to make a manditory testing, (which I think they should), they should at least present the option to the family. I am truly sorry about your son.
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Hi there!!!!
I know its been a while but things have been kind of difficult for me here.
Fortunately Ifigeneia went through her transplant just fine. We have been out of the hospital for a month now but we keep going back regularly for tests.
Thank god she is doing great - we are going back for tests only once a week now - her platelets are finally up, so are her white blood cells, so we are thankful for that.
Now, we are preparing for her radiation sessions which will probably begin after the New Year. Also, we are doing some tests again to see if everything is still allright - I pray to God that the results are good.
I am sorry if I havent been able to write back but you can understand how things are - plus no Internet at home!!!
I will try to keep you up to date about our situation.
I cant thank you enough for your interest and your prayers - I am sure you include Ifigeneia in them.
Love,
Bettina
P.S. Have a Merry Christmas and a Happy New Year with your family. Enjoy your school vacation.
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Dear Betty,
Thank you so much for writing back! I'm glad that Ifigeneia's blood count went back up and you got some rest and you got to see your children!Now that I know I'm glad you didn't write back because then you couldn't have been taking her temp! Is 40 a high white blood count?![[:^)]](/emoticons/emotion-18.gif) because I don't really know about that stuff but even if its not congratulations that it doubled it's size[<:o)] School's great and it's fun my family is doing fine we're all safe and sound! HOPE AND LUCK TO YOU!!
Love,
Kerry
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Dear Kerry,
Please DON'T WORRY. Everything is allright with me and Ifigeneia. It's just that these 2-3 past days have been very difficult on both of us. Due to her low white cell blood count, she has had high fever for days now and high blood pressure. That means that we have to take blood samples every morning (thank God for Hickman central lines - they don't have to use needles therefore she doesn't experience any discomfort at all), I take her temperature almost every 30 minutes - the nurses must think I am crazy  which I am not - plus check on her blood pressure and give her the medicine. All that means that I don't get any rest and I am feeling a little tired. Yesterday, my husband came to the hospital and spent the night with her and I got to go home and see my two older children - that is why I didn't have the chance to write back - I dont have Internet at home.
Today, Thursday, things are a little better for Ifigeneia and her white blood cell count just went up from 20 to 40!!!! YEAH!!!! That means we are starting to make some progress. Hopefully by next week she'll be a lot better especially her mouth sores which have proven to be very difficult on her.
Anyway, how are things with you? How is school? Your family? tell me more about you.
Love and Many Thanks for your concern,
Betty
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I'm sorry I keep writing but you not writing me back is making me very nervous! Is Ifigeneia doing alright?![[8-|]](/emoticons/emotion-15.gif) Is she going through surgery? Oh please write me back! I've never met you or Ifigeneia but I feel very attached like were family so please let me know whats going on!!!!!!!!!!!! It's been 2 days since last time you wrote and I'm very worried and anxious! Although if something was going on you really would be too worried to type wouldn't you You would just be calling people letting them know whats going on!!!!!!!!!!!!!
Love almost family,
Kerry
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Hi Hi Betty,
Just checking to make sure everythings alright with Ifigeneia You didn't write back so I got worried!!! Is everything alright? Don't forget to read the message above this! Please write back so that I know Ifigeneia's alright (and you of course)!!!!!!
Love,
Kerry
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