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My 5 Year Old has Stage 4 Cancer

Mommy_of_Aiden
Posts: 5
Joined: Jun 2009

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...

secretqueenbee13
Posts: 4
Joined: Jul 2009

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's picture
kapoth21
Posts: 1
Joined: Apr 2007

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
Posts: 2
Joined: Sep 2009

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
Posts: 3
Joined: Sep 2009

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.

For_Alex
Posts: 4
Joined: Nov 2009

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

tesslynn32
Posts: 5
Joined: Aug 2009

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.

mykidsmommy's picture
mykidsmommy
Posts: 65
Joined: Apr 2007

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's picture
just4Brooks
Posts: 987
Joined: Jun 2009

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

karlaanne
Posts: 7
Joined: Jan 2010

I wish you well Brooks! It's not easy no matter the age!!

enjoy
Posts: 1
Joined: Oct 2009

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
Posts: 10
Joined: Dec 2009

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
Posts: 5
Joined: Jun 2009

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

For_Alex
Posts: 4
Joined: Nov 2009

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"

karlaanne
Posts: 7
Joined: Jan 2010

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!

For_Alex
Posts: 4
Joined: Nov 2009

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
Posts: 7
Joined: Jan 2010

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
Posts: 4
Joined: Nov 2009

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
Posts: 8
Joined: Oct 2010

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
Posts: 3
Joined: Nov 2010

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

kerryrussell48's picture
kerryrussell48
Posts: 1
Joined: Sep 2011

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

roypalmeto
Posts: 4
Joined: Dec 2011

Hi there, have you been searching on the net for alternative ways to treat Aidens cancer. I would like to suggest the Dr. Budwig protocol. That's one of a whole bunch of treatments that you can right in your own home for your child. Did your doctor tell you to cut out all sugars until Aidens health is back to normal. It should be imperative of doctors to give parents a list of foods that are anti cancerous to be eaten to help his condition. We are what we eat yes??

AmynBri
Posts: 6
Joined: Feb 2012

Mommy_of_Aiden,

My 9 year old daughter, Brianna, was diagnosed with stage IV Wilms last month (Jan. 2012). Like your situation, thusfar her biggest battle has been the metastasization in her lungs. I have been looking for someone with a case similar to my daughter's.

Yesterday marked Bri's 5th week of chemo. They plan on taking out her right kidney and the largest tumor in her right lung, but are waiting for the chemo to shrink them down to a size that is safer to remove. I am very scared about the treatment and would LOVE to hear from you. What kind of treatment was your son on? What meds did he take? What happened? Do you have any advice? Did the wilms in his lungs have nodules and did how did it affect his lungs? For some reason, the wilms in Bri's lungs not only spread throughout like it normally does but grew a large mass in and on her right lung as well. I have not found any stories like that yet.

How did they find the cancer in his spine? I have read that wilms can metastasize to nearly all soft tissue including the brain, spine, and bone marrow. Bri's has spread to her lungs, lymph nodes (including ones around her heart and in her neck), and liver. After what research I have done, I asked her doc if they are going to scan other areas of her body to see if those are affected. It seems like they've found it in where they've scanned. The doc said they don't just scan areas looking for stuff and they would not scan other areas unless they had reason to believe it has spread to those places as well...i.e. if she starts having seizures they will scan her brain (etc.) I understand, but I want to know where all it is. I don't see why there is a need to wait until it is so bad she has symptoms from it.

She barely had symptoms of this before it was found! I took her to the doctor because she had started experiencing dramatic weight loss and had become extremely lethargic. Other than that she had complained for a couple of days of side pain. What caused you to find the Wilms in your son? Did he have symptoms before it was found? Did he undergo full lung radiation, proton therapy, or a combination of the two?

How long did they wait to do your son's nephrectomy (assuming he had one)? Did you have to wait for it to shrink? Other than the symptoms I'd mentioned, Bri was perfectly fine before it was found. After it was discovered, she was hospitalized for approx. a month and had her central line put in and a biopsy done the first day. After this surgery, her health seemed to plummet. Since then she has not been the same child. She is very shaky all the time and her voice sounds weak and quivers. It almost sounds like she is always crying but she insists she is fine. She seems like a little old lady trapped in the emaciated body of a 9 year old girl.

I just have so many questions for you. I would absolutely love to hear from you. I would really like to get into contact with someone whose child has been treated for (specifically) stage 4 wilms relatively recently (will prob have a similar treatment). Bri starts a trial regimen in 2 weeks that I am having anxiety over. If you would contact me I would be absolutely ecstatic.

Thank you,

~Amy

gaylemkm
Posts: 4
Joined: Jul 2012

Hi Amy

My son (at time of diagnosis age 9) was diagnosed with Wilms in March 2011. He underwent 20 weeks of chemo, 4 hospitalizations, and 3 surgeries. He's been in remission for 11 months. Next month we will have a scan to check his lungs ... he's developed more lung nodules .... this may be a relapse ... in 20 days I will know.

My son was only stage II but had many complications along with way including blood clots, lung biopsies, and colon blockage.

Please email me if you'd like to chat: martensbusserv@tds.net

Lisa82
Posts: 5
Joined: Aug 2012

Hi,

I just wanted to let you know that I was diagnosed with a stage 4 Rhabdomyasarcoma when I was 4. It had begun to spread and my mum was told I would not survive. I'm now 30 and although I do have lots of health problems I'm still here to tell the tale. Keep strong and trust in your little boy to be strong too. If u have any q's just ask xx

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