Wilm's Tumor Support Group

Hi pinkangel:
I had a whilms tumour as well when I was your son's age as well. And like your son I too went through chemotherapy and radiation to shrink the tumor. But in my case, neither helped, and as a result my right kidney had to be removed. Being 32 now, I am starting to really feel the after-affects from all the treatments that were done.
If you need someone to talk to, for support or just to vent, look me up.....I wish your son all the best of luck in his persute to recovery......

Thanks for your reply. Could i ask how long you had to have check ups for and things and also what do you mean by you are starting to feel the after affects?

Hello!
On June 28th 2010 my 5 yr old son was diagnosed with a Wilms Tumor on his right kidney. I took him to the pediatrician one morning because I noticed a "lump" on the right side of his abdomen. By 4pm that afternoon, he was admitted to the hospital on the cancer floor. Four days later, he had his right kidney, along with the tumor, removed.

Immediatley following the surgery, within 14 days, Jason had 6 radiation treatments and he started his chemo treatment. We are on a 19 week treatment plan. We just finished up week 10 this week.

I won't lie, watching my little boy be put under to go into surgery was the hardest thing I've ever had to endure. Seeing his limp little body be wheeled back there, knowing that they were going to cut him open and remove a part of him, was absolutely horrible. But, seeing him recover from it, knowing that he was completely cancer free, was absolutely wonderful. Now, watching him go through these weekly chemo treatments, seeing him lose his hair, him being skin and bones, it's hard too. There is nothing easy about having a kid with cancer.

We just keep pushing through, somehow. I'm not sure what's gotten us to this point but we're here, and we're almost done. I have a blog on CaringBridge if you'd like to read it. It may help, it may not.

Just know that you're not alone. Luckily, Wilms has a wonderful prognosis. It could be worse. That's what I keep telling myself anyway. I think we're still in shock, even though it's been almost three months since diagnosis. You just don't wake up one morning thinking you're kid is going to have cancer. No one thinks that and you can't prepare for it. Luckily, I have a very supportive family and the Children's Hospital we go to is absolutely fabulous.

Please feel free to get a hold of me if you need anything. I will help in any way I can.

http://www.caringbridge.org/visit/j...
That's the link to Jason's blog... I forgot to put it in my previous reply.

Hi!

i am 13 and have just finished cancer treatment for wilm's tumor. in my age wilms tumor is very rare and dangerous but luckily mine was not malignant. it weighed 2.5 kilos at first. i went through agressive chemo and radiation and am fine. i only have one kidney now and a big scar but have just started back at high school! your little boy sounds sweet, and at his age, wilms is one of the 'easiest' cancers to beat. he'll do fine.

best of luck
Kia Kaha (stay strong)
Gemerald

Hi! My son was 18 when he had Wilm's tumor in January last year. He had chemo to shrink the tumor then they took out his left kidney because it was no longer functioning and the tumor with it. He underwent 6 radiation sessions and more chemo- a total of 19 in all. He was declared cancer-free in January of this year and we're looking forward to January 2011 when his portacath will be taken out after another all-clear.
It's been the toughest time for our family and last year was the longest in our lives but somehow we all pulled through and are again enjoying normal lives.
I wish you and your son the best. It may not seem so right now but it'll be over soon and you'll both be all right. Do take care of yourself.

Love and strength,

sunmaid

I have had, and continue to have check-ups and follow-up roughly every 6 months. what I mean by after-affects, I refer to:
-severe loss of hair
-persistant internal bleeding
-severe nausia
those are just a few symptoms that I havce encountered. Thats not to say that it happens to everyone, but it has with me.

Hi pinkangel:
My daughter, Brianna, was diagnosed with Wims Tumor stage IV last month (Jan. 2012) She is 9 and turns 10 March 7. I too am looking for someone to keep in contact with who is going through relatively the same thing we are. It is nice to talk to friends and family and even cancer survivors but I would really REALLY like to find someone dealing with Wilms as well. I haven't yet talked to anyone.

One thing I will say is to not worry so much (if that's possible lol). I completely understand and just about lost it last month. My daughter had been feeling relatively well and had been attending school and everything. I picked her up from school to take her to the dr. on Jan. 6 of this year b/c she had been losing alot of weight and was increasingly tired with each passing day. blah blah blah...hours after the pediatrician seeing her in the wee hours of the morning on Jan. 7 I was pulled into a separate room at Riley Children's hospital (2 hours from home) and told my daughter has cancer. talk about shock... within days I would learn it has spread beyond her right kidney to her lymph nodes (including the ones in her neck and surrounding her heart), her liver, and both of her lungs. Scary to say the least. Hers has grown very large too. Too large to take out immediately and we are too in the waiting stage to have it removed after it can get shrunken down alot. She has undergone 6 weeks of chemo now and she would have started "Regimen M" treatment this past Monday had she not gotten an infection in her blood.

Anyway, definitely feel free to contact me anytime you want to. I JUST found this site and hope to hear from you. You can look me up on Facebook if you'd like. My name is Amy Stantz and my profile pic is of my daughter and me or you can e-mail me at ismellbologna@hotmail.com. Yeah, I know it's a weird e-mail addy but I've had it for years and it's the only one I really ever check :) Keep your chin up and TRY NOT TO WORRY SO MUCH!!! My daughter is going to make it and so is your son!!! At least it's not agressive (anaplastic)! That's a victory in itself is it not? Much

Whoops...overlooked this post was from 2010. I guess my search continues...

One of my VERY BEST friends had a Wilms Tumor @ 3 and she is now a BEAUTIFUL HEALTHY NORMAL 12 year old girl if you need the support or strength please visit her website

http://www.caringbridge.org/tx/bria...

Always remember to keep your head up and stay strong and you're never alone.