Neuroblastoma survivor with ?'s

2

Comments

  • Catiebugbee
    Catiebugbee Member Posts: 14
    btcat said:

    Hi reenicd
    I am a childhood brain tumor survivor and don't know anything about your type of cancer,
    I really wish i could help you. All I have to offer is that it is a given that we cannot donate blood. They won't take it as per any risks from residuals of cancer and/or treatments. It's just a minor thing we have to face. Minor in the face of all the late effecxts that many of us childhood survivors deal with.

    It seems a bit hard, doesn't
    It seems a bit hard, doesn't it, when all you want to do is give back for the blood that kept you alive during your own treatment? But so it is...
  • Catiebugbee
    Catiebugbee Member Posts: 14

    Questions about Neurblastoma
    Hi everyone I am also a survivor of Neuroblastoma and I have many questions as well. I am 30 years old and I was dignosed sometime around 13 months of age. I have joined a late effects clinic here but I still don't have answers to many of the questions I have about the late effects my treatments caused. For a long time I didn't know any other cancer survivors and now I know I am not alone. I still would like to get to know other childhood cancer survivors. If anyone wants to talk send me a message here and I will try and get back to you as soon as I can.

    Getting to know other childhood survivors
    I have very little information to give - I was very young, and have since developed a repressive memory, and pretty much all my photos and hospital stuff/belongings got thrown out after I got better... I think my mother wanted me to just move on and live my life, and not ever consider myself to be that same little girl who would request to see the clinic goldfish (actually, it was the tank's suckerfish I was in love with!) before every blood draw.

    I'm at uni now, living away from home in the place I lived before we moved to the place I was treated. It's both lifting and overwhelming when I retrieve even just a tiny piece of one of those memories, which happens now that I am back at the home I knew as a child.
    Anyway, having someone to talk to could be good, so if you want to get to know someone else, I don't mind if you message me back. :)
  • Kathryn824
    Kathryn824 Member Posts: 1
    Hi I'm Kathryn. I was
    Hi I'm Kathryn. I was diagnosed with neuroblastoma when i was 2 years old in 1994. I had stage 3 or 4. I am now 18+ years old and healthy. I still am a little embarrassed of my scar which is about a foot long across my stomach. When i went to donate blood, at first they didn't know if i can or not but eventually they accepted me. It's nice to know there are other neuroblastoma survivors out there somewhere.
  • cafe66
    cafe66 Member Posts: 1

    Neuroblastoma 1952
    I was diagnosed in 1952 at 2 weeks old with a lump in my neck. The neuroblastoma was located in my neck and chest.

    The operation was done at Children's Hospital in Philadelphia PA by the Chief Surgeon of Pediatrics, Dr. Everett Koop. I was 4 weeks old. I was cut all around. (The scar goes from the middle of my chest to the middle of my back. Plus a small neck scar from the biopsy.)

    I did not receive radiation or chemo. I returned to Children's Hospital every 6 months until I was 12 years old. My chest is not symmetric. My growth was stunted and I took hormones at age 16 to stimulate growth. (Done at Children's Hospital.) I was 4'10" at the time. I am now 5'5" and I have 3 six foot sons and one 5'5 daughter.

    Children's Hospital Oncology Department ask me to return after my first two children were born and they investigated hereditary factors for neuroblastoma.

    My four children and ten grandchildren are all healthy.

    Unfortunately my parents were reluctant to tell me much about my operation, and I was a teen before the word cancer was used. (They always called it tumor.) Both my parents are deceased and the only document I have from Children's Hospital is a letter from Dr. Koop to my Aunt, who was a Nurse, Major in the Air Force. The letter explains my illness and projected a poor prognosis.

    I will be 57 on Aug 12.

    Neuroblastoma 1968
    I was diagnosed in 1968 at a hospital in NY State. They did surgery to remove the tumor and then I had Cobalt Radiation Treatment then I went to the Children's Hospital in Philadelphia and Dr Koop did another surgery. This time it was to explore and see if the cancer cells were gone I have a big scare on my back.
    The first surgery lasted 8 hours and the surgeon told my parents I had 50% chance of survival but I would be completely paralyzed because part of the tumor was wrapped around my spinal cord. After the surgery I moved my feet so they new I wasn't paralyzed.
    My Mom would tell me that the nurses at the Children's Hospital in Philadelphia were not very patient. I was already 2 when they did the second surgery but I wasn't potty trained. The nurses complained that they had to change my diapers. I remember they had those beds with the high metal bars on them. I remember feeling as if I was trapped there. This hospital seemed very impersonal. I remember that I didn't know if I could ever go back home. The nurses didn't really explain what they were doing to me. I am not complaining because I survived cancer.
    It was pretty traumatic being there and the medical staff told my Mom she shouldn't cry in front of me. I still have a few memories and I wasn't even 3 years old yet. At the same time I am very grateful to the medical staff that allowed me to heal from cancer.
  • jillebob
    jillebob Member Posts: 12 Member

    Hi I'm Kathryn. I was
    Hi I'm Kathryn. I was diagnosed with neuroblastoma when i was 2 years old in 1994. I had stage 3 or 4. I am now 18+ years old and healthy. I still am a little embarrassed of my scar which is about a foot long across my stomach. When i went to donate blood, at first they didn't know if i can or not but eventually they accepted me. It's nice to know there are other neuroblastoma survivors out there somewhere.

    Hello....
    Welcome to the group. Glad there is more survivors out there..
  • indiareynolds
    indiareynolds Member Posts: 2
    jillebob said:

    Hello....
    Welcome to the group. Glad there is more survivors out there..

    NEUROBLASTOMA DIAGNOSTED IN 1965
    I am still reeling from finding this page...so much now falling into place...the math phobia...even with a high IQ...I was diagnosed on my first birthday - a Saturday morning, September 26th of 1965 when I could no longer pass urine. A tumor the size of a small orange was found free-floating in my abdomen right in front of my spine. It was "resected in situ" on Oct. 13, 1965 and I was sent home with less than a 30% chance of survival past my 15 month milestone. I had not "pulled up" in the playpen nor made any attempts to walk... I clearly remember waking up in the hospital crib, it's green bars holding my feet up so I wouldn't tear the stitches...after crying "Mommy up!" all day, they finally untied me and I proceeded to run everywhere. Due to the poor prognosis of all NP patients at that time, it was recommended (after I survived another two months) that I be placed in a clinical trial at MD Anderson in Houston where I was given a 3000 RAD Tumor dose to the abdomen and took Cytoxin orally, 4X daily for 24 consecutive months. Although I have had no recurrance of the original tumor, I have had bilateral radiation necrosis which caused the growth centers in my femur(s) to slip and so were surgically pinned and I spent from 1973 - 1975 on crutches, and then in a wheelchair. After having to learn to walk again twice before my 11th birthday, I later underwent bilateral total hip replacement and now have better range-of-movement than before due to the diminished size of my pelvis/hips post radiation. I also have lost all of my teeth but have a fabulous pair of fake ones and never have to worry about flossing :) Sorry for running on but I am a bit overwhelmed at finding ANYONE who has ever heard of NB, let alone survived it. I have found my soulmates at last!
  • T.M.M65
    T.M.M65 Member Posts: 6

    NEUROBLASTOMA DIAGNOSTED IN 1965
    I am still reeling from finding this page...so much now falling into place...the math phobia...even with a high IQ...I was diagnosed on my first birthday - a Saturday morning, September 26th of 1965 when I could no longer pass urine. A tumor the size of a small orange was found free-floating in my abdomen right in front of my spine. It was "resected in situ" on Oct. 13, 1965 and I was sent home with less than a 30% chance of survival past my 15 month milestone. I had not "pulled up" in the playpen nor made any attempts to walk... I clearly remember waking up in the hospital crib, it's green bars holding my feet up so I wouldn't tear the stitches...after crying "Mommy up!" all day, they finally untied me and I proceeded to run everywhere. Due to the poor prognosis of all NP patients at that time, it was recommended (after I survived another two months) that I be placed in a clinical trial at MD Anderson in Houston where I was given a 3000 RAD Tumor dose to the abdomen and took Cytoxin orally, 4X daily for 24 consecutive months. Although I have had no recurrance of the original tumor, I have had bilateral radiation necrosis which caused the growth centers in my femur(s) to slip and so were surgically pinned and I spent from 1973 - 1975 on crutches, and then in a wheelchair. After having to learn to walk again twice before my 11th birthday, I later underwent bilateral total hip replacement and now have better range-of-movement than before due to the diminished size of my pelvis/hips post radiation. I also have lost all of my teeth but have a fabulous pair of fake ones and never have to worry about flossing :) Sorry for running on but I am a bit overwhelmed at finding ANYONE who has ever heard of NB, let alone survived it. I have found my soulmates at last!

    My NB was found at 15 month
    My NB was found at 15 month until I was 7yrs. I was treaded at fairview hosptial in Cleveland Ohio, now it's Cleveland Clinic. I had 2 great doctors their names were Doctor Dale Van Duzan and Doctor Edward Kilroy. When it was all said and done They removed my pericardium around my heart,scraping of my arota, 7ribs ,half lung, muscle mass,breast tissue, My scapula never grew. I had Radiation/chemo I was a gunnie pig! I have always want to know how many there are of us?
    This nasty disease that tears a person apart phyically and mentally. My whole life I have woren a mask. I call it my happy face, when felt like crying ,hated ,unloved, looked for acceptance. No child should ever feel this pain but back the we didn't have couciling for Parents,Sibiling,Families.
    I was in a room that no one could come to hold me because of all the tubes all i can remember is bits and pieces like People looking at me threw a glass window, Adults talking to Mommy and Daddy.
    Mommy starts crying and Daddy looking at me and smiling then they would come in and kiss me with where mask on and tell me how much they loved me. I think that's were I learnd how to wear my mask so well.
    Then come my siblings came in to my life, My first sister would see me on and off and all she knew is that I got speical things like gifts and cards. She grew up resenitig me for it. Then came my baby sister She grew up protecting me from bullies and hateful people. They were tought to protect me and was always told becareful don't hurt her wacth out for her bad side. Then back to the hospital for me this went on for years.
    I met a new friend on F.B link and She found this site and told me I am so glad to find there are other like us more later
  • jillebob
    jillebob Member Posts: 12 Member
    T.M.M65 said:

    My NB was found at 15 month
    My NB was found at 15 month until I was 7yrs. I was treaded at fairview hosptial in Cleveland Ohio, now it's Cleveland Clinic. I had 2 great doctors their names were Doctor Dale Van Duzan and Doctor Edward Kilroy. When it was all said and done They removed my pericardium around my heart,scraping of my arota, 7ribs ,half lung, muscle mass,breast tissue, My scapula never grew. I had Radiation/chemo I was a gunnie pig! I have always want to know how many there are of us?
    This nasty disease that tears a person apart phyically and mentally. My whole life I have woren a mask. I call it my happy face, when felt like crying ,hated ,unloved, looked for acceptance. No child should ever feel this pain but back the we didn't have couciling for Parents,Sibiling,Families.
    I was in a room that no one could come to hold me because of all the tubes all i can remember is bits and pieces like People looking at me threw a glass window, Adults talking to Mommy and Daddy.
    Mommy starts crying and Daddy looking at me and smiling then they would come in and kiss me with where mask on and tell me how much they loved me. I think that's were I learnd how to wear my mask so well.
    Then come my siblings came in to my life, My first sister would see me on and off and all she knew is that I got speical things like gifts and cards. She grew up resenitig me for it. Then came my baby sister She grew up protecting me from bullies and hateful people. They were tought to protect me and was always told becareful don't hurt her wacth out for her bad side. Then back to the hospital for me this went on for years.
    I met a new friend on F.B link and She found this site and told me I am so glad to find there are other like us more later

    Genetics?
    I posted before that I am a neuroblastoma survivor
    I recently went to a neurologist to be seen because I started having seizures in my sleep. I was working one day and collapsed at work and had a grand mal seizure in front of a surgeon. Thank god I did because he documented everything.. I have had seizures in the past. Only for them to state that I am lacking in sleep because all tests came back fine, EEG's and CT scans and it was if I really didn't have them though my husband seen it and my youngest daughter was the one who found me sleeping on the couch. My oldest daughter who is 21 now started having seizures at the age of 2. I actually had to video tape her for the doctors to believe her. Well when I seen the neurologist she went through my family, past childhood illness, etc.. She couldn't understand why this was happening to me. I was soooo scared she was going to state that maybe I had something going on which cancer was one of my thoughts. She asked about my daughters.. The oldest having epilepsy (only in her sleep also) then she asked about my younger daughter.. she asked if she had any problems growing up.. then she asked if she ever had a seizure.. I stated she did when her fever was high when was sick. She looked at me. I was so upset. She stated "I know what your problem is.. I believe...your genetics.. Your bodies can't take lack of sleep..stress...etc.." She scheduled a brain MRI just in case. The results came back and there was nothing wrong. My husband was relieved also because I think he thought I had a brain tumor. So mine must be a genetic thing. AS far as math.. I was an algebra tutor is school. I love math. English on the other hand..I can't stand and haven't done very well at it. I had my seizures down to where I could tell I was going to have one days before. I would wake with a headache and I couldn't sit still. I love to cross stich. But I couldn't. I would start and have to put it down within 3 minutes. I also have some form of OCD. I worry alot about if I will get cancer again. I had a benign lump removed from my leg when I was about 26 years old. I thought I was going to die. I was so happy to get the result that nothing was wrong.
  • moonkai
    moonkai Member Posts: 4

    I'm so glad I found you guys!
    I am so excited to find this page! I also don't know much about when I had NB as a baby and little kid - it is not spoken of, ever, and I spent the last year of high school tracking down people with photographs of me when I was sick, as well as collecting the stuff I saved from my mother throwing out after I got better. I'm supposed to move on and never look back, but it feels like I'm throwing apart a small part of me that I'll never get back.
    And don't even ASK about my file - it might never have existed, as treatment in NZ is... Well, while the survival rate for high-risk NB is 30% in the states, it's 10% here. If you're able to move to one of the two hospitals in the entire country that actually do pediatric cancer treatment.

    I'm unable to donate blood, but the reason is because NB can still be present in the bone marrow and blood, and a transfusion with your blood could give it to someone else.

    I'm so glad I found all you guys on here. I joined TIC - Teenage Info on Cancer - last year, but most members are undergoing treatment as teenagers, not lost teenage girls trying to find what happened to them.
    I was reading through the posts, and so many things fall into place - I apparently have a really really high IQ, but I struggle with math and some branches of logic; I have some mild ongoing health problems other people on here seem to have; I had trouble leaving the city we moved to in the first place when I was 4, because it turns out the one specialist guy I see every year is here, when he's needed everywhere else, too!

    Sorry if I'm a little incoherent in this reply, I'm just a bit overwhelmed at finally finding others out there who have no idea what happened to them. And at finding you, someone who also feels the need to know what happened, and had a father that actually told her NB was nothing to be ashamed of. I don't know if you have any idea what finding this page - heck, this website! - means to me.

    Im so glad I found you guys!
    Catiebugbee, I think you are my twin hahaha. I just joined this page in hope I would find someone out there who has a similar story to myself. Thank god there is !!! I too had neuroblastoma, I was diagnosed with stage 4 at 6 weeks old in 1981. 13 years later I went into remission. The doctors told my parents that there was a very slim chance that i would make it to 6 months old. I live in Australia and for the life of me I can not find a person who has a similar story. I was told that I was going to be intellectually disabled, blind and infertile. I have proved them wrong on all 3 accounts. I fell pregnant accidently at the age of 18. I never really worried about the pill because they had said I couldnt have children. And since then I have had 2 more beautiful kids. Abeit Im a single mother, but wouldnt have it any other way. Im also a nurse and a photographer. So my eyesight cant be too bad haha.
    My mother does not talk to me about what happened when i was sick, I think she finds it too hard to talk about, I have approached her a few times, but like you was told to move foward. How are you supposed to move forward when you have such a huge void in your childhood. I have always felt different to other children. I have scars that i was unable to explain to friends when i was little, so it was just easier to hide my body ( and I have done this to this day) I started puberty when i was 5 ( not period, just everything else)I thought that it was normal until I had a sleepover with friends one night.
    I also have a high IQ, but I also have blonde moments where the simpliest things are hard to figure out ! maths is not my forte, so when everyone had posted that, it then made sense to me. I would love to chat with you sometime to we could swap more stories xox [email protected], please feel free to email me anytime xoxo
  • moonkai
    moonkai Member Posts: 4

    Hi I'm Kathryn. I was
    Hi I'm Kathryn. I was diagnosed with neuroblastoma when i was 2 years old in 1994. I had stage 3 or 4. I am now 18+ years old and healthy. I still am a little embarrassed of my scar which is about a foot long across my stomach. When i went to donate blood, at first they didn't know if i can or not but eventually they accepted me. It's nice to know there are other neuroblastoma survivors out there somewhere.

    Kathryn824
    Hi Kathryn,
    I too had neuroblastoma. Stage 4. I also had a scar that goes across my stomach ( one side to the other) I still feel funny about my scar, but i think its more about what other people will think if they saw it. Once i finished school i didnt worry as much. I have donated blood also, they accepted my without any questions. Its nice to know you can give back xox
  • Carlas
    Carlas Member Posts: 3
    DarcieG said:

    Survivor with questions...?
    I am 15 years old, and I will be 16 in March. I was diagnosed with Neuroblastoma at 9 months, and I am now completely cured and healthy. I go to Atlanta every year for annual tests and things like that to make sure everything is running smoothly, and so far every time I've been back they have found nothing. I am concerned, however, with what cancers I am going to have to really look out for in the future. I am somewhat of a hypochondriac, and I have very high anxiety when it comes to my health. I worry about it constantly. I don't want anything to happen to me, now or later. I was just wondering if anyone could tell me what cancers I am more susceptible to because I had Neuroblastoma. Thank you so much for any information.

    Living cancer free
    I can relate to you having beeen worried about the future of cancers, I was the same way as a teenager. I am now 44 years old and have had no reoccurance of any cancer. I was 18 months old when Ohio State University hospital did my neuroblastoma (3 tumors). I was followed every 6 months by Columbus Childre's Hospital until I became an adult. I would recommend focusing on the positives and be proud that you are a survior. Become involved in fun things to help with decreaing anxiety. I am 42 years cancer free and counting.
  • Carlas
    Carlas Member Posts: 3
    moonkai said:

    Kathryn824
    Hi Kathryn,
    I too had neuroblastoma. Stage 4. I also had a scar that goes across my stomach ( one side to the other) I still feel funny about my scar, but i think its more about what other people will think if they saw it. Once i finished school i didnt worry as much. I have donated blood also, they accepted my without any questions. Its nice to know you can give back xox

    donating blood
    This is surprising, because in High School I was told I could never donate blood due to my cancer history.
  • Catiebugbee
    Catiebugbee Member Posts: 14
    moonkai said:

    Im so glad I found you guys!
    Catiebugbee, I think you are my twin hahaha. I just joined this page in hope I would find someone out there who has a similar story to myself. Thank god there is !!! I too had neuroblastoma, I was diagnosed with stage 4 at 6 weeks old in 1981. 13 years later I went into remission. The doctors told my parents that there was a very slim chance that i would make it to 6 months old. I live in Australia and for the life of me I can not find a person who has a similar story. I was told that I was going to be intellectually disabled, blind and infertile. I have proved them wrong on all 3 accounts. I fell pregnant accidently at the age of 18. I never really worried about the pill because they had said I couldnt have children. And since then I have had 2 more beautiful kids. Abeit Im a single mother, but wouldnt have it any other way. Im also a nurse and a photographer. So my eyesight cant be too bad haha.
    My mother does not talk to me about what happened when i was sick, I think she finds it too hard to talk about, I have approached her a few times, but like you was told to move foward. How are you supposed to move forward when you have such a huge void in your childhood. I have always felt different to other children. I have scars that i was unable to explain to friends when i was little, so it was just easier to hide my body ( and I have done this to this day) I started puberty when i was 5 ( not period, just everything else)I thought that it was normal until I had a sleepover with friends one night.
    I also have a high IQ, but I also have blonde moments where the simpliest things are hard to figure out ! maths is not my forte, so when everyone had posted that, it then made sense to me. I would love to chat with you sometime to we could swap more stories xox [email protected], please feel free to email me anytime xoxo

    I wish CSN had sent this to
    I wish CSN had sent this to my homepage! I ended up finding it when I went back through this forum topic... I'll send you an email now :)
  • Catiebugbee
    Catiebugbee Member Posts: 14

    NEUROBLASTOMA DIAGNOSTED IN 1965
    I am still reeling from finding this page...so much now falling into place...the math phobia...even with a high IQ...I was diagnosed on my first birthday - a Saturday morning, September 26th of 1965 when I could no longer pass urine. A tumor the size of a small orange was found free-floating in my abdomen right in front of my spine. It was "resected in situ" on Oct. 13, 1965 and I was sent home with less than a 30% chance of survival past my 15 month milestone. I had not "pulled up" in the playpen nor made any attempts to walk... I clearly remember waking up in the hospital crib, it's green bars holding my feet up so I wouldn't tear the stitches...after crying "Mommy up!" all day, they finally untied me and I proceeded to run everywhere. Due to the poor prognosis of all NP patients at that time, it was recommended (after I survived another two months) that I be placed in a clinical trial at MD Anderson in Houston where I was given a 3000 RAD Tumor dose to the abdomen and took Cytoxin orally, 4X daily for 24 consecutive months. Although I have had no recurrance of the original tumor, I have had bilateral radiation necrosis which caused the growth centers in my femur(s) to slip and so were surgically pinned and I spent from 1973 - 1975 on crutches, and then in a wheelchair. After having to learn to walk again twice before my 11th birthday, I later underwent bilateral total hip replacement and now have better range-of-movement than before due to the diminished size of my pelvis/hips post radiation. I also have lost all of my teeth but have a fabulous pair of fake ones and never have to worry about flossing :) Sorry for running on but I am a bit overwhelmed at finding ANYONE who has ever heard of NB, let alone survived it. I have found my soulmates at last!

    Same here! It's almost like
    Same here! It's almost like I have found family, the real family I belong to...
  • Melntez
    Melntez Member Posts: 1
    jillebob said:

    Hello....
    Welcome to the group. Glad there is more survivors out there..

    Glad I found this group too!!
    Hi all,

    As a mother of a child diagnosed with Stage 4 Neuroblastoma in Sept 2006 (just before his 2nd birthday), I am so, so happy to read all your posts & discover how many of you there are!! Imagine how many there are out there who haven't found this site yet!!!

    My son Tyler had an 8cm tumour removed from his abdomen & still lives with several lesions in his liver. He is almost 7. At diagnosis we were told he had 10-20% chance of survival. He had a couple of surgeries, high dose chemotherapy, stem cell transplant & radiation. In June 2007 we were told he had relapsed & were given perhaps a couple of months!! It's now been 4 years & it seems that diagnosis may have been wrong!!!

    As a parent of a NB child there are ALWAYS so many fears & concerns, however, I will never keep his cancer a secret from him no matter how much I would like to try to forget about it. Life changed the moment he was diagnosed & was never, ever the same but he is so incredible & amazing (as you ALL are) & getting through this beast of a cancer is something to be PROUD of, don't ever be ashamed of that or any scars that you may have!!

    I now wonder about the long term side effects that Tyler may face. I used to get upset thinking about the fact that he will most likely never be able to have children & am amazed that some of you have. I consoled myself by thinking that if he is still with us when he is old enough to have children then we will deal with it then & we'll just be so lucky to still have him!!

    So far at school he is doing great & is enjoying sport & living a normal life. I'd say the thing we notice the most with him is that he can become very angry & very sensitive - very easily, but mostly he is a happy, normal boy.

    I have a website that I kept during Tyler's journey that you may like to visit: www.4tylerjames.com

    I will always be amazed at just how far Tyler has come especially as I know (& read of) many children daily losing their battle to neuroblastoma (& other childhood cancers) but I want to thank you all for giving me MORE HOPE that Tyler can oneday join this group himself as a LONG TERM SURVIVOR : )

    We have scans coming up next week - the nerves are setting in . . . wish us luck xxxxx
  • eanunez
    eanunez Member Posts: 1
    daughter recently diagnosed
    my daughter is 21 months old and was recently diagnosed with stage 4 neuroblastoma. the tumor encased her left kidney so that had 2 b removed 2. she is about 2 start her 2nd round of chemo. i've read the list of possible side effects of all the drugs shes been given & i've spoken 2 the doctors but i would like 2 hear from survivors. when my daughter beats this i would like 2 prepare for any other obstacles she may come across. im particularly interested in the female perspective. Thank you
  • jillebob
    jillebob Member Posts: 12 Member
    eanunez said:

    daughter recently diagnosed
    my daughter is 21 months old and was recently diagnosed with stage 4 neuroblastoma. the tumor encased her left kidney so that had 2 b removed 2. she is about 2 start her 2nd round of chemo. i've read the list of possible side effects of all the drugs shes been given & i've spoken 2 the doctors but i would like 2 hear from survivors. when my daughter beats this i would like 2 prepare for any other obstacles she may come across. im particularly interested in the female perspective. Thank you

    More...
    Head on over to Facebook.. There is a group that are neuroblastoma survivors and other cancer issues in the groups page. Just search it.. you must be registered on Facebook...This is the site for neuroblastom survivor site...might keep you informed about the future...
    https://www.facebook.com/home.php?tab=4#!/groups/2255398912/
  • jillebob
    jillebob Member Posts: 12 Member
    eanunez said:

    daughter recently diagnosed
    my daughter is 21 months old and was recently diagnosed with stage 4 neuroblastoma. the tumor encased her left kidney so that had 2 b removed 2. she is about 2 start her 2nd round of chemo. i've read the list of possible side effects of all the drugs shes been given & i've spoken 2 the doctors but i would like 2 hear from survivors. when my daughter beats this i would like 2 prepare for any other obstacles she may come across. im particularly interested in the female perspective. Thank you

    More...
    Head on over to Facebook.. There is a group that are neuroblastoma survivors and other cancer issues in the groups page. Just search it.. you must be registered on Facebook...This is the site for neuroblastom survivor site...might keep you informed about the future...
    https://www.facebook.com/home.php?tab=4#!/groups/2255398912/
  • jillebob
    jillebob Member Posts: 12 Member
    eanunez said:

    daughter recently diagnosed
    my daughter is 21 months old and was recently diagnosed with stage 4 neuroblastoma. the tumor encased her left kidney so that had 2 b removed 2. she is about 2 start her 2nd round of chemo. i've read the list of possible side effects of all the drugs shes been given & i've spoken 2 the doctors but i would like 2 hear from survivors. when my daughter beats this i would like 2 prepare for any other obstacles she may come across. im particularly interested in the female perspective. Thank you

    oops

    oops
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    Questions about Neuroblastoma
    Hi reen, I am dealing with the same issue. I have very little information about my diagnosis. I do know that it was stage 4 and I was 13 months old when doctors told my parents the news. I had chemo and radiation and one of the drugs was experimental and it caused my heart to fail. I have been living with cardiomyopathy ever since. I had surgery to remove my kidney and adreanal glad. In also have many other late effects from my treatments. I was treated in what I call the "dark ages" in the late 70's 80's. (I am 32 now)The hospital I was treated at was able to give me some info on the drugs I was given but I have no file and there is no other information.