My 5 Year Old has Stage 4 Cancer

Mommy_of_Aiden
Mommy_of_Aiden Member Posts: 3
edited March 2014 in Childhood Cancers #1
I'm just a young married mommy of one beautiful child named Aiden who is now 5 years old. He was diagnosed with Nephroblastoma (Wilms) Cancer on January 9th, 2009. He is still undergoing Chemotherapy and has had 28 rounds of radiation. His cancer spread to his spine, and lungs as well as the given abdominal cavity. The cancer in his lungs is our biggest (known) battle right now. Wilms is usually caught much sooner it seems, when it's easier to treaat, not as spread, and has a better prognosis. It is very rare for Wilms to spread as Aiden's has, and he doesn't have the greatest prognosis.

I guess I am just looking for support, to spread awareness to others, and to see if there is anyone else out there that can relate to such a wide spread Wilms Tumor.

I ache for my little boy...
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Comments

  • secretqueenbee13
    secretqueenbee13 Member Posts: 4
    Hello
    Hello. My name is Megs and I am 15. I am here if you would like my support. I know that I am only 15 but I have had cancer and I know COUNTLESS people that had it. I am here if you would like to talk.
    Love,
    Megs
  • kapoth21
    kapoth21 Member Posts: 1
    I"m here
    HELLO I HAD A LITTLE GIRL SHE IS 5 YEARS OLD SHE WAS DIAGNOSED WHITH A.L.L AT TWO YEARS OLD SO I UNDERSTAND HOW YOU FEEL, IF YOU NEED TO TALK TO SOMEONE YOU CAN COUNT ON ME.
  • tonsofhope
    tonsofhope Member Posts: 2
    kapoth21 said:

    I"m here
    HELLO I HAD A LITTLE GIRL SHE IS 5 YEARS OLD SHE WAS DIAGNOSED WHITH A.L.L AT TWO YEARS OLD SO I UNDERSTAND HOW YOU FEEL, IF YOU NEED TO TALK TO SOMEONE YOU CAN COUNT ON ME.

    mom of ALL
    Hi I am a mom of a childhood cancer w/ALL. She was diagnosed at the age of 5 1/2 yrs, now she is 8 1/2 yrs old. I'm looking to have someone to talk to who is going thru the same thing. love to chat...
  • erin3746
    erin3746 Member Posts: 3
    Wilms Tumor
    My daughter Erin 5 was diagnosed with wilms tumor on her kidney, Stage V. She is be going thru chemotherapy now, this will be her 3rd round. , I understand when you say you ache for your little boy. I pray that he is doing well, here if you need to talk.
  • tesslynn32
    tesslynn32 Member Posts: 5
    Hi, my name is Jessica and I
    Hi, my name is Jessica and I am 33. I was diagnosed with Wilms at the age of 3. I don't remember much of it, but if you ever need to talk you can email me swtcountrygirl28@aol.com. I will be praying for your little boy.
  • For_Alex
    For_Alex Member Posts: 4
    erin3746 said:

    Wilms Tumor
    My daughter Erin 5 was diagnosed with wilms tumor on her kidney, Stage V. She is be going thru chemotherapy now, this will be her 3rd round. , I understand when you say you ache for your little boy. I pray that he is doing well, here if you need to talk.

    Erin3746 and
    Erin3746 and Mommy_of_Aiden,

    I just happened to be looking through posts on this website when I saw both of yours...I too am a young mother of a 5 year old wonderful boy, Alex, who just a month ago (Oct. 10, 2009) was diagnosed with Stage IV Wilms Tumor. His cancer has spread to his lymphnodes and his lungs so we have radiation to endure once the tumor is small enough to remove. We have just begun our journey and what a scary place it is to be!!! I understand completely your aching as I too feel the same as I am sure all of the other parents of children going through this horrible experience. My personal email is jensanden16@hotmail.com and I would love to talk about experiences, etc. I find it hard to talk without crying but do well writing about it.

    With love and prayers,
    Alex' Mom
  • mykidsmommy
    mykidsmommy Member Posts: 76
    My heart aches with you
    Dear Aiden's Mom -

    I read your post - and my heart is aching with you and for your family. Here's what I know - I am a stage 3 cancer (colon) and I made it through - it was rough but I did it. I know you will roll up your sleeves and do whatever it takes to help heal your baby boy. I have a five year old son too - I am would have cancer and chemo 15 times over it meant my child would be spared - but it seems as though we don't get the choice now do we.

    I was hoping you might tell us how your son's cancer was caught - any signs or symptoms?

    I have been a frequent flyer over on the colon cancer board - and those dear people have helped me through some dark days - but something led me here tonight - to read about you and Aiden and to pray for him, which I will do.

    I hope this board brings you some support and strength as you starts this journey with him. YOU will get through this - and with each day - some of the fears go away and some light shines on some new answers -

    Just know you have a mommy in San Diego praying for your son tonight -

    Love
    Honor
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    I wish I could take it away
    My name is Brooks and I have stage 3 colorectal cancer, I thank god every day that I have it and not one of my kids. I understand the pain that you must be going through. I wish I could take Aiden's cancer away. Life sometimes is hard but I hate it when it's a kid.


    Brooks
  • enjoy
    enjoy Member Posts: 1
    Hang in there...
    I just wanted to start off by saying stay strong. I am a cancer survivor. I was diagnose with Wilms at age 4. I am now 26 years old. I'm not too familiar with the different stages but I can tell you what exactly happen to me. I lost my left kidney and was paralyzed from the waist down. Doctors said I wasn't going to walk again but I am walking to this day. I am told that the tumor was the size of a grapefruit and was pressing up against my spine. I did the whole round of chemo/radiation, got through it and all signs of cancer were gone. A year later however I relapsed with the cancer growing where my kidney was. Needless to say I went back in for another round of chemo/radiation.
    I'm not going to lie it was tough. I was young and just wanted to enjoy life. I don't really have any "amazing" advice but what I can say is remembering that I just wanted to have an average childhood. I think morale is possibly the key to getting through this. Anything that can keep your child upbeat and smiling will help keep their immune system fighting. I'm sorry I can't be anymore useful but if you have any questions feel free to ask. I'm an open book :)

    - Jason
  • snv123
    snv123 Member Posts: 10
    enjoy said:

    Hang in there...
    I just wanted to start off by saying stay strong. I am a cancer survivor. I was diagnose with Wilms at age 4. I am now 26 years old. I'm not too familiar with the different stages but I can tell you what exactly happen to me. I lost my left kidney and was paralyzed from the waist down. Doctors said I wasn't going to walk again but I am walking to this day. I am told that the tumor was the size of a grapefruit and was pressing up against my spine. I did the whole round of chemo/radiation, got through it and all signs of cancer were gone. A year later however I relapsed with the cancer growing where my kidney was. Needless to say I went back in for another round of chemo/radiation.
    I'm not going to lie it was tough. I was young and just wanted to enjoy life. I don't really have any "amazing" advice but what I can say is remembering that I just wanted to have an average childhood. I think morale is possibly the key to getting through this. Anything that can keep your child upbeat and smiling will help keep their immune system fighting. I'm sorry I can't be anymore useful but if you have any questions feel free to ask. I'm an open book :)

    - Jason

    I read your post. Felt very
    I read your post. Felt very sad for your kid.
    Would like to help your child.I m realizing the pain here.
    Good luck Mom.
  • Mommy_of_Aiden
    Mommy_of_Aiden Member Posts: 3
    Hey all. I haven't read this in awhile, it was nice to see all of the replys to my post. Aiden finished treatment in September. He is due for scans January 8th. Talk about fear. I could never express the hell my husband and I have felt, and feel daily. Let alone our boy.
    What a scary time; but it feels nice to read such kind words from people like you.
    We all have one thing in common... cancer.


    Aidens website:


    caringbridge.org

    site name: monkeyaiden


    This is a great site to use for family and friends during your illness!

    Truly,
    Mommy_of_Aiden
  • karlaanne
    karlaanne Member Posts: 7
    been there
    my heart goes out to everyone dealing with or have gone through cancer treatment. My daughter was 4 when diagonsosed with stage 4 wilms at the age of 4. she is now 17 and a senior in high school planning her next phase in her life...college. she is ready to go but I am not. I think I worry about her more unlike I do with my oldest daughter. I hope your little guy pulls through this. I wish him well!
  • karlaanne
    karlaanne Member Posts: 7

    I wish I could take it away
    My name is Brooks and I have stage 3 colorectal cancer, I thank god every day that I have it and not one of my kids. I understand the pain that you must be going through. I wish I could take Aiden's cancer away. Life sometimes is hard but I hate it when it's a kid.


    Brooks

    sorry
    I wish you well Brooks! It's not easy no matter the age!!
  • For_Alex
    For_Alex Member Posts: 4

    Hey all. I haven't read this in awhile, it was nice to see all of the replys to my post. Aiden finished treatment in September. He is due for scans January 8th. Talk about fear. I could never express the hell my husband and I have felt, and feel daily. Let alone our boy.
    What a scary time; but it feels nice to read such kind words from people like you.
    We all have one thing in common... cancer.


    Aidens website:


    caringbridge.org

    site name: monkeyaiden


    This is a great site to use for family and friends during your illness!

    Truly,
    Mommy_of_Aiden

    Good Luck!
    Just wanted to let you know that I will be thinking of you and your family on the 8th. I dont know what is worse...the watching your child endure the treatments and Dr. visits or the waiting around to find out whats next. At least your wait is almost over and I pray it brings you wonderful news in this new year!

    "Good Luck" doesnt seem fitting but its all I can think of right now:)

    Jenni Green
    "Alex' mom"
  • For_Alex
    For_Alex Member Posts: 4
    karlaanne said:

    been there
    my heart goes out to everyone dealing with or have gone through cancer treatment. My daughter was 4 when diagonsosed with stage 4 wilms at the age of 4. she is now 17 and a senior in high school planning her next phase in her life...college. she is ready to go but I am not. I think I worry about her more unlike I do with my oldest daughter. I hope your little guy pulls through this. I wish him well!

    Questions
    Karlaanne,

    My son Alex is 5 years old and has stage IV wilms. He has just last week finished up radiation treatments, he had the surgery to remove his right kidney a few weeks before that, and now I feel we are kind of coming in the home stretch (hopefully) with most of the tough procedures behind us.

    As a survivor and someone who has gone through this as a parent, I wanted to ask you if there was any advice, suggestions you might have for life after the treatments. My family is not the healthiest and I am considering changing to a more organic diet, going to counseling (Life With Cancer) for both my son and my husband and I, and just changing parts of our lifestyle to be able to live happier and healthier once this phase has passed.

    I worry daily about everything...when my son goes back to school having social issues (he is 5 and is already really shy - After only 2 months in Kindergarten he was moved to the Homebound program which will continue for the remainder of his kindergarten year because of the swine flu and flu season), developing emotional issues later in life, long term effects, etc...do you every get passed those things? Do you ever go back to the happiness that you had before or do you constantly just worry?

    Thank you for any guidance you can give or things that worked for you and your family. I can imagine it to be very scary when the child you have not only taken care of for 17 years but whom you have also been through so much with, to be going away to school. I dont know what advise I can offer to you other than you are so blessed to have made it this far - and how wonderful it will be to see her walk with her classmates as she graduates! Congratulations to you and your daughter:)
  • carriek05
    carriek05 Member Posts: 7
    For_Alex said:

    Questions
    Karlaanne,

    My son Alex is 5 years old and has stage IV wilms. He has just last week finished up radiation treatments, he had the surgery to remove his right kidney a few weeks before that, and now I feel we are kind of coming in the home stretch (hopefully) with most of the tough procedures behind us.

    As a survivor and someone who has gone through this as a parent, I wanted to ask you if there was any advice, suggestions you might have for life after the treatments. My family is not the healthiest and I am considering changing to a more organic diet, going to counseling (Life With Cancer) for both my son and my husband and I, and just changing parts of our lifestyle to be able to live happier and healthier once this phase has passed.

    I worry daily about everything...when my son goes back to school having social issues (he is 5 and is already really shy - After only 2 months in Kindergarten he was moved to the Homebound program which will continue for the remainder of his kindergarten year because of the swine flu and flu season), developing emotional issues later in life, long term effects, etc...do you every get passed those things? Do you ever go back to the happiness that you had before or do you constantly just worry?

    Thank you for any guidance you can give or things that worked for you and your family. I can imagine it to be very scary when the child you have not only taken care of for 17 years but whom you have also been through so much with, to be going away to school. I dont know what advise I can offer to you other than you are so blessed to have made it this far - and how wonderful it will be to see her walk with her classmates as she graduates! Congratulations to you and your daughter:)

    Dear For_Alex

    Hi, my name is Carrie. I am the mother of a 17 year old girl who is graduating high school this year as well. She was diagnosed with a Wilms tumor at the age of 3. Her's was not stage IV but the tumor was attached to her left kidney and during the surgery to remove the tumor and her kidney the tumor burst while still in her body. She too had to have chemo and radiation because of the tumor bursting. We still go once a year for a checkup and, knock on wood, she has had no recurrences since the surgery. I wanted to let you know that all your worries and fears and questions are valid and so totally normal. Life does get better, it really does. I can't sit here and tell you that the worrying and the fears you have will ever go away because I have to admit that anytime she has an ache or a pain my first thought is oh my god the cancer came back. Then I get myself together and realize that she is still a normal teenager who is going to get aches and pains just like everyone else. I used to run her to the doctor everytime she said she didn't feel good or had an ache or pain but that get's better as well. As time goes on and the years pass, you'll realize that it's not necessary everytime. I know right now that probably doesn't seem possible, but someday it will. Life does become happy again and somewhere down the line it will all of a sudden even seem "normal" again. It takes a long time to get there but you will be there someday.
    My daughter too was a very shy child and still is to a point but she has her friends and she goes out on the weekends and has her fun. She knows that she had cancer and she also knows that it could come back at any time but it has not affected her. She lives her life and does her thing and has fun. She is straight A student and a very good kid. She doesn't drink, do drugs, etc. She is your typical 17 year old teenager - smart allic and a know it all!! To date there have been no long term affects that me or her doctors have come across. I know right now you feel helpless and hopeless and scared. You might even feel very angry. You have a billion questions about the future and probably wish you could see into it and know that everything will turn out ok. That was me 14 years ago. But like I said, it really does get better and you and your family will be happy again. All you can do right now is be there for him and do whatever he needs you to do to help him get through and past all of this.
    My thoughts and prayers are with you, your husband and especially Alex. I hoped this helped just a little.
  • For_Alex
    For_Alex Member Posts: 4
    carriek05 said:

    Dear For_Alex

    Hi, my name is Carrie. I am the mother of a 17 year old girl who is graduating high school this year as well. She was diagnosed with a Wilms tumor at the age of 3. Her's was not stage IV but the tumor was attached to her left kidney and during the surgery to remove the tumor and her kidney the tumor burst while still in her body. She too had to have chemo and radiation because of the tumor bursting. We still go once a year for a checkup and, knock on wood, she has had no recurrences since the surgery. I wanted to let you know that all your worries and fears and questions are valid and so totally normal. Life does get better, it really does. I can't sit here and tell you that the worrying and the fears you have will ever go away because I have to admit that anytime she has an ache or a pain my first thought is oh my god the cancer came back. Then I get myself together and realize that she is still a normal teenager who is going to get aches and pains just like everyone else. I used to run her to the doctor everytime she said she didn't feel good or had an ache or pain but that get's better as well. As time goes on and the years pass, you'll realize that it's not necessary everytime. I know right now that probably doesn't seem possible, but someday it will. Life does become happy again and somewhere down the line it will all of a sudden even seem "normal" again. It takes a long time to get there but you will be there someday.
    My daughter too was a very shy child and still is to a point but she has her friends and she goes out on the weekends and has her fun. She knows that she had cancer and she also knows that it could come back at any time but it has not affected her. She lives her life and does her thing and has fun. She is straight A student and a very good kid. She doesn't drink, do drugs, etc. She is your typical 17 year old teenager - smart allic and a know it all!! To date there have been no long term affects that me or her doctors have come across. I know right now you feel helpless and hopeless and scared. You might even feel very angry. You have a billion questions about the future and probably wish you could see into it and know that everything will turn out ok. That was me 14 years ago. But like I said, it really does get better and you and your family will be happy again. All you can do right now is be there for him and do whatever he needs you to do to help him get through and past all of this.
    My thoughts and prayers are with you, your husband and especially Alex. I hoped this helped just a little.

    Thank you
    Dear Carriek05,

    I just want to thank you for your sincere posting. When I was on this site now months ago, I was so desperate for answers, help, and just needed to hear some reassurance or positiveness and that is what your posting gave me. I dont know if you still check this site or not...but if so, thank you!!!

    My son Alex is doing great, he has been in remission since May 2010. He has started 1rst grade a few weeks ago and is now back playing baseball again and loving it. Our family is still trying to make sense of everything that we went through and I believe like so many others we will be doing that for a long time. I am grateful everyday for my children and for each and every moment we can spend as a family outside of hospitals. I do have fear of relapse but try to push it out of my head as much as possible. I think it is especially hard the closer we come to "scans" time...my faith has grown tremendously and having positive people around me helped get us through the experience.

    Thank you again for your posting, I wanted to write then but I was so emotionally exhausted, I couldnt. It did mean a lot to me and just wanted you to know that.

    Jenni
  • mommyofthree
    mommyofthree Member Posts: 8
    For_Alex said:

    Thank you
    Dear Carriek05,

    I just want to thank you for your sincere posting. When I was on this site now months ago, I was so desperate for answers, help, and just needed to hear some reassurance or positiveness and that is what your posting gave me. I dont know if you still check this site or not...but if so, thank you!!!

    My son Alex is doing great, he has been in remission since May 2010. He has started 1rst grade a few weeks ago and is now back playing baseball again and loving it. Our family is still trying to make sense of everything that we went through and I believe like so many others we will be doing that for a long time. I am grateful everyday for my children and for each and every moment we can spend as a family outside of hospitals. I do have fear of relapse but try to push it out of my head as much as possible. I think it is especially hard the closer we come to "scans" time...my faith has grown tremendously and having positive people around me helped get us through the experience.

    Thank you again for your posting, I wanted to write then but I was so emotionally exhausted, I couldnt. It did mean a lot to me and just wanted you to know that.

    Jenni

    Praying for you and your little boy
    You need enormous strength and faith. I ams ure you have them. I will pray every minute for your little cute boy - may he see recovery sooner and may he be cancer free and healthy one day. Pl know there is treatment, there are cures and there is hope. Please take care and love and best wishes.
  • DianeJa
    DianeJa Member Posts: 3
    Cancer
    Each cancer has the possibility to spread on the body.It is right that if diagnosed at the beginning the chances to spread are very little.Also as a doctor I can tell you that each kind of cancer at children and young adults spreads very quickly.This is because their cells divide very rapidly in comparison with adults.From my experience,there are a lot of such cases that after several chemotherapy cures were declared in remission and the prognosis was good.Of course this cannot be made overnight.It is a long process that can take more than two years.Diane James
  • cancer surviour age 5
    hey my name is kerry
    i read your story my hart goes to you i know how hard it is i have a 5year old little girl she has neroblastoma stage 4 she was 4 weeks old when she first went in geelong hospital i new she was very sick she would turn blue and roll her eyes in the back of her head so i would call 000 and go in to the hospital they told me u are not looking after her so after mths in hospital they told me your baby is very very sick i said whats wrong they told me she has lumps all over and it is cancer she has only a week or two live if cemo did not work and they said we are sorry for not lisen to me and good luck then we went to melburn children hostital after mths being in there doing cemo after cemo and told every time we seen the doctor you know she will not live and i said yes she will watch and she is still with me and goes to pre school and we had no remishon i realy hope your son is good rember never give up kids dont at the end of a rainbow is hope
    this is my little angle and my little fighter her name is rhiannon gusman age 5 she will be 6 in nov this year ps life is the biggest rollercoaste you dont know what around the corner and thats what got me the unkown it eat u up in side and the pain u fill but at the end of the day i look at my baby and just know each day is a good day so live for today and have no regrets