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Childhood Cancers

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To Whom It May Concern: I Am Not Gone.
A Living Letter from a Survivor Still Fighting I’ve seen the reports, the search blurbs, the cautious headlines. I understand how easy it is to file away a name like mine into a footnote of survivorship—quiet, distant, presumed done. But let me make this perfectly clear: I am not gone. I am not fading. And I am not…
From an Old Childhood Cancer Survivor to a Young Survivor
I’m speaking from the experience of a long-term childhood cancer survivor—just myself, not all of us. It's been a 60-year journey: good, bad, and everything in between. I don't know exactly what this young person is going through, but when I was their age, I didn’t have anyone to walk beside me, hold my hand, or tell me…
My story
This story isn’t for pity—it’s for perspective. I wrote it for those who never got to speak, and for those trying to find the words. Survivorship doesn’t end with treatment—it echoes through every part of life. And this is how it sounded for me. I want everybody to understand why I waited 60 years to come out hard with…
Childhood Cancer Survivor Late Effect /Understanding the Battle
Joe Perusic is not just fighting for survivors—he’s illuminating the battle they’ve already endured. A battle of long-term side effects, systemic silence, erased records, and overlooked pain. Too often, advocacy is flattened into noise, and survivors are seen as “difficult” for daring to speak the truth.
📌 1. Summary Explainer – “Survivorship at 60: A Record They Never Measured”
Who I Am: Joseph Perusic, diagnosed with Wilms tumor in 1965. Treated at Texas Children’s Hospital. No long-term survivorship follow-up provided. Now 60 years post-treatment and documenting systemic neglect, long-term complications, and unacknowledged survivorship. What I’ve Experienced: Multiple medical complications…
long term survivors
Are there any other long term childhood cancer survivors out there ? Does anyone need to talk to a long term survivor.
Seeking Guidance on Supporting a Child with Cancer: Emotional and Practical Tips
Hello everyone, I’m new here and wanted to reach out to the community for some advice. I have a family member who was recently diagnosed with childhood cancer, and as you can imagine, it’s been a tough time for all of us. I’m looking for some guidance on how to best support them during their treatment journey. What have…
Any 'older' neuroblastoma survivors out there?
Hi all-- I'm a 51 year old survivor from neuroblastoma, discovered when I was 8 weeks old in 1958. Is there anyone else out there who has survived a neuroblastoma from the '50s or 60's? I'm wondering if anyone has had problem with ganglioneuromas? Anyway, I'd be interested in talking with others who have survived this…
Late Term Effects Chemo - where I am now 14 months after reading NYTimes Article
Hi Everyone, I'm new to these forums. I want to find a survivor support group or network. 14 months ago, I read the New York Times article titled "It takes a lifetime to survive childhood cancer", and it upended my life. I had a Wilms Tumor removal when I was 4 (left kidney only) followed by chemotherapy (no radiation).…
My nephew has high risk neuroblastoma
Hello everyone, My nephew who is 8 years old has been diagnosed with high risk neuroblastoma stage 4. He needs to start aggressive chemo and radiation treatment as soon as possible, but even with treatment, his prognosis is below 40% chances of survival. His parents are set against starting treatment, and are looking for…
Leukemia
I have Acute Nonlymphocytic Leukemia. I was diagnosed in 5/1986. I was 14. Just reaching out to see who can relate.
Profession of childhood cancer survivors
Hello, I wonder whether having had cancer as a child, makes people want to be doctors, nurses, lab technicians or any other health profession. I had leukemia as a child and am now working in a lab doing medical analysis. I chose that job because I wanted to learn more about leukemia (what it was exactly, how it was treated…
Wilms Tumor Survivors
Hi, I am a Wilms Tumor survivor. Were any of you who survived Wilms Tumor as a child had a mother who was a smoker by chance?
Rhabdomyosarcoma survivors
Hello, I'm 22 year old rhabdo survivor (embryonal). Looking to see how many of us there are and to connect!
Recurrence Anxiety
Hello. My name is Jeff and I was diagnosed with Rhabdomyosarcomo at age 9. I underwent a little over a year of chemo and a short stint of radiation therapy. I've been cancer free ever since. I am now a husband and a father to 3 beautiful little kids. When I think about how well my treatment went and how trivial the long…
Wilms Tumor Survior
Hi. I'm 25 and I was diagnosed with a wilms' tumor at the age of 4 through a series of events. I was hospitalized for a routine appendectomy. My appendix was removed but after recovery I still had severe abdomonial pain. I was again hospitalized and had an exploritory operation. They discoverd that my intestine had twisted…
Have any childhood cancer survivors experienced mental difficulties in their adult years?
I've had this overwhelming depression on my shoulders ever since I hit my late teens. A lot of simple conflict situations in social environments give me a life or death feeling like I need to either escape or my life is in danger. I have anxiety at times that seems to make the people around me feel uncomfortable. They'll…
Long lasting chemo effects.
Hello, I came to ask a question and get input from other survivors and see what you all say. I am a 26 year cancer survivor of Wilm’s Tumor dx at the age of 5. I under went chemotherapy and radiation and had a left nephrectomy. My answer to a question that my mother told me growing up was questioned today and my mother…
Adults that had Wilms Tumor as a child
Hello My name is Elizabeth and i am looking for anyone else, who had wilms tumor as a child or know anyone that did? I am 28 years old right now, I have been cancer free for 22 years.
Long term Liposarcoma survivors with biomechanical issues
Non-Hodgkin's Burkitt's Lymphoma Survivors?
Hello, I was diagnosed when I was 15, and relapsed when I was 16. I'm now attending college and I find that I'm still dealing with some delayed responses and I have a lot of trouble focusing and remembering things. I was wondering if there was anyone else out there who can relate. :) I've been in remission nearly five…
Child Brain tumor
I am Looking for some people who have or are currently going through treatments with their child with a brain tumor. My four year old niece was diagnosed in april this year with a pineoblastoma brain tumor. Has undergone so much and would love to hear from others
Childhood cancer survivor
I was diagnosed February 14, 1989 with a mixture I’m so brain tumor I was given a 5% chance of living. I am now 43 years old realizing that I’ve had problems all my life with commitment and holding down job. The job part was not that I could not do the job or that I was not good at the job. It’s just something that was…
I Need Advice for My Child Recently Diagnosed with Leukemia
Hello everyone, This is my first post here, and I'm reaching out with a heavy heart. My beautiful 6-year-old daughter was just diagnosed with ALL (acute lymphoblastic leukemia). It's been a whirlwind of emotions, and our whole family is trying to find our footing. I'm hoping to connect with other parents who have walked…
30 year childhood Leukemia cancer survivor
Hi, my name is Rebecca. I was diagnosed with ALL November 15, 1988. I was 12 and in 7th grade. I was treated at the Valerie Center in Summit, NJ. This year will be 30 years since my diagnosis and I'm doing pretty well . I'm looking to chat with fellow childhood cancer survivor and see how everyone is doing in their…
RHABDOMYOSARCOMA 1953 survivor
Diagnosed in 1953 just before my third birthday. The only treatment I received was surgery. My eye and eye lids were removed. From this point, I have had to deal with the disfigurement of my face. Great family support but once I entered school the trauma began. Diagnosed with PTSD as an adult after a car accident and the…
rhabdomyosarcoma
I NEED SOME HELP HAS ANY ONE HAD A CHILD THAT HAD RHABDOMYOSARCOMA IN THE PELVIS. MY SON HAD CHEMO, RADIATION AND SURGERY. HE HAS EXPIERNCE MANY LONG TERM SIDE EFFECTS. IS THERE ANY ONE THAT HAS HAD THIS SAME PROBLEM AND HOW DUE THEY FIGURE IT OUT
Bladder Rhabdomyosarcoma and local contril
my my two year old son has bladder rhabdomyosarcoma that is now in the urethra. The original vac/ vi regimen didn't respond and we are doing radical bladder removal in a week. Has anyone done is or have any advice? Excuse this font! email Jeannie
Fighting Rhabdomyosarcoma
Hello all, My beautiful 1 year and a half old son was recently diagnosed with embryonal rhabdomyosarcoma in his middle ear. We have completed 4 cycles of chemotherapy and just discovered that the cancer has progressed. At first, his tumor showed great response to chemo and reduced significantly in size after just 2 cycles.…
8-year-old Chinese boy diagnosed with rare brain cancer, parents seek treatment experience
Hello everyone, I am the father of an 8-year-old boy from China. My son suffered an epileptic seizure in August this year and was diagnosed with a brain tumor. Puncture biopsy and craniotomy were performed, and the pathological diagnosis was polymorphic xanthoastrocytoma grade 2-3 (APXA), which is a high-grade glioma.…

Childhood Cancers

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