Hello, my name is Alexis Stappen

I am conducting research through Purdue University Global to obtain a Master’s Degree in Psychology.

The purpose of the research is to determine whether there is a relationship between posttraumatic stress symptoms (PTSS) and personality development in adult childhood cancer survivors in comparison to adults who have never had cancer.

If you are interested in taking the survey, please click here for more information: https://www.surveymonkey.com/r/5HFQBMS

The survey will take about 20-30 minutes of your time.

This study will be anonymous, so no one will know that you were a participant and no one will ever be able to connect your answers to your identity. Click here to participate! https://www.surveymonkey.com/r/5HFQBMS

The research study is in no way sponsored, endorsed, administered by, or associated with Reddit. Participants release Reddit of any responsibility or liability associated with participating in this research.

Hi my son was diagnosed with hepatoblastoma a type of liver cancer. I was wondering if anyone else has experience this how they treatment went and if they had a transplant how did that go. Just curious/ worried parent.

Hi all,

I am a sibling of a childhood cancer angel . My younger sister passed away almost 8 years ago and I am now 24 trying to figure out life/career trajectories. I know just because the unfortunate reality of childhood cancer fell onto my family’s lap does not mean I’m obligated to go into this field. However, something keep drawing me back after all these years. For the longest time I thought I wanted to be a doctor, but the matter fact is it’s such an emotional toll for me and I see my sister in the patients still. What really drives me is the research. I am not satisfied with just pulling things off the shelf because chemotherapy is poison and it hurts just prescribing poison without doing anything about it. I want to innovate and push the needle forwards. I guess what I’m asking is have any other siblings faced the same dilemma and any peds onc families that chose more research bc the emotional toll with patient-facing care was too much?

Excuse me, I am a relative of a child with leukemia and recently I had to accompany him to one of his chemotherapy sessions, there were times when the pain he felt made him cry or despair and I felt very bad, apart from consulting with the doctor who checked at times how he was doing, I would like to know if you can recommend a way to distract him or help him not to focus on his pain during his sessions. Thank you very much.

Our son was diagnosed with neuroblastoma earlier this year and we’ve rounded out his fourth (and hopefully final) round of chemo. Between rounds we’ve been pretty cautious about going places or having family over unless they’re masked - especially when his ANC was below 500.

Our oncologist mentioned that his CBC numbers should normalize a month out from treatment, but his immune system won’t totally be back until 6 months out (no live vaccines until then).

I’m wondering how cautious were people post treatment since there’s not really a great blood test to indicate immune system strength past the CBC. Did you mask at all? Require masks for visits? Go places? These past couple of months have been isolating, and we have no idea what level of protection with other family members we’ve been needing to do in regard to masking and hanging out inside.

I got retinoblastoma when I was 3 years old and have since been cancer free, however.. I now face wearing a prosthetic eye because of the tumor. I'm thankful everyday for still being alive and thankfully still being able to see through my right eye. But it's honestly a pain to have to go through. I really wish sometimes that I was able to see like every other individual. If anyone has had anything similar, please lmk how you cope and accept yourself for who you are. I'm still in my late teens and during this time period of your life I guess you get filled with a lot of insecurity. I feel like this is just a rant but it's honestly so bad for me. Thanks if you've read this!

Roughly a week ago we noticed an odd reflection in my nine month old baby’s left eye. Fast forward 4x visits, an EUA and an MRI.. my baby was diagnosed with eye cancer, know as retinoblastoma. It has unfortunately advanced to stage E and he has lost vision in his eye. Fortunately, the MRI showed that the cancer didn’t spread to the optic nerve so we may be able to hold off on chemo if we are in the clear. The devistating news, aside from the cancer itself, is that my baby’s beautiful left eye will need to be removed. 💔 I am equally optimistic, shocked, mad, upset.. anyone here experience this type of cancer or a child losing their eye?

Hi everyone, I am a PhD student at Concordia University and I am currently recruiting parents of Canadian children that currently have or previously had cancer to participate in our Beyond Study. The Beyond Study aims to better understand the mental and physical well-being of Canadian youth with cancer, survivors of childhood cancer, and their parents, as well as the impact of the COVID-19 pandemic on their well-being. Participating in the Beyond Study involves an online survey which takes about 20 minutes to complete. Once complete, you will then have the chance to win a $100 Amazon gift card!

If you are interested in participating, please complete our online survey on our LinkTree by clicking this link: https://linktr.ee/thebeyondstudy

This study has received ethical approval from Concordia University (certificate #30016775)

Just looking for information/experiences with the diagnosis and ways I can support my friend. Her son was diagnosed this week and he just barely turned 2. He is starting chemo today with planned surgery and bone marrow harvests in the future. He is their only child and they are staying at the hospital with him.

My son has a congenital heart defect and despite going through a traumatic hospital stay a year ago, I’m finding it hard to know what to do or say. We’re planning on dropping off meals. Is there anything else that was particularly helpful while you were in the hospital?

Hi Everyone, I am a graduate student at Concordia University and we are currently recruiting for our study the Childhood Cancer Identity Project (CCHIP). We are looking for adult survivors of childhood cancer to participate in an online study looking at cancer identity (how you view yourself as a survivor, victim, person who has had cancer, etc.) and mental and physical health outcomes. Our online study is open to people in Canada and the U.S, and should take approximately 40-55 minutes to complete.

If you’re interested in participating, email us at cchip.research@gmail.com, use this link https://concordia.yul1.qualtrics.com/jfe/form/SV_eRvL6U1F8Yv1BfU or visit our website at https://bhilab.com/current-studies/the-childhood-cancer-identity-project-cchip-examination-of-cancer-identity-and-wellbeing-in-adult-survivors-of-childhood-cancer/

​

Hi all, I started growing my hair out with the intention of donating it to those going through treatment. I’ve heard some places tend to charge patients while others do not. Does anyone have suggestions for organizations who are ethical? What has your experience been like donating? Thanks! :)

Hello, my name is Komal. I am a graduate student in the Kinesiology department at SFSU. I am researching the role of parents in the motivation to perform physical activity in pediatric cancer patients. I am looking for parents/guardians of children aged 6-12 years old who have been diagnosed with or have had pediatric cancer and are actively involved in their child's care. The study involves doing a survey and an interview over zoom. Please dm me if you are interested!

The My Health Journey App is designed to help children between the ages of 5-15 navigate their health journey. Hoffy, the Sloth serves as a companion from diagnosis to post-treatment care. The app features interactive scenes and mini-games, helping families explore challenges such as the first doctor’s visit, taking a blood sample and managing hair loss during chemotherapy.

If you're interested in delving deeper into the BTF app and understanding how its tailored to support children throughout their treatment journey, feel free to click on the following link to explore our website: BTF App Details.

For more updates, follow us on Instagram (https://www.instagram.com/thebraintumorfoundation/) and Facebook (Brain Tumor Foundation)

I have a dear friend whose son is ending treatment the day before his 5th birthday. Exciting all around and I want to get a gift to commemorate the day. Does anyone have any suggestions??

I have our pediatrician appointment set in 2 days but I can’t focus at all until then. Last week, my son had Petechiae on his front and back neck, about 1 day apart, one after the other. This preceded a 3 day fever during which he was extremely lethargic and lacked any other symptoms (no congestion).

I’m on my way to my daughter’s soccer practice and I’m just in an all messed up state.

What have been your experiences, and has anyone had petechiae coupled with fever (and no other conditions) end up being another condition like CMV?

Hi all -

Our son was diagnosed with neuroblastoma and we’ll soon be having a Hickman line placed. He’s 11 months old and very active - does anyone have any recommendations on how to cover the lines in a way he can’t pull at them, or how to make it more comfortable for him? Also wondering about outfit recommendations - I was thinking about finding sleepers that zipped both ways, hoping to find some snug enough to help keep the lines in place.

Also if anyone could send advice on how to handle central lines please do. I’m incredibly anxious about him having one placed and making sure it doesn’t get infected.

UPDATE: we’re actually having a port placed instead of a catheter. This has all been a learning curve, but hoping the port will be easier to care for.

My baby was just diagnosed with retinoblastoma today. We are getting an MRI tomorrow but we are in complete shambles. I need to know if anyone here has gone through this or can offer any info/advice?

I dont even know where to start. My son was diagnosed with autism when he was 4. He has done so well to overcome that. He is now a out to turn 17. At the end of the school year he was diagnosed. We had been to the er a couple times and his dr, we were told growing pains and maybe something muscular. Then it was painful to walk, he was crying through the night and bending his leg was getting difficult. It was a tumor. By the time it was found it had metastasized to his lungs. 2 weeks before christmas we were told we are focusing on "prolonging his life". He is my mini me, his brothers best friend and his sisters hero. I dont want to give up but I am SO lost. I want to know more about clinical trials but, have no idea where to start. I am so scared. They have suggested we don't tell him he is terminal unless he asks. I also dont know how I feel about that. I go between wanting to tell him and being afraid he will just give up. I mean he knows the tumors will still be there when he is done chemo, he is smart so I think he knows that it's a possibility.

Edit: i realized i left out some information He had his leg amputated back in August. The tumor had grown so rapidly that it broke his femur. When they did the full body scan, they found tumors in his lungs "too numerous to count." They were all super small, but his lungs light up like a city. He is on his last round of chemo now ( methotrexate, doxi, and sisplaten* I know that's not spelled right) and then they are putting him on a maintenance med that usually people who have gone into remission take after finding new cancer. They said surgery would be too extensive, and because the cancer is everywhere, a transplant isn't possible

Hi, my niece has ALL, High risk. She has had chemo and 2 CAR-T (as part of clinical trial) u fortionaly B cells are rising indicating return of bad bcels is coming. And we have to move forward with bone marrow transplant. Yale has just brought up fertility reservations and insurance immediately denied it.

We have like 2 more days to come up with remaindered of money, and I am desperately looking for grants we meet eligibility criteria for. Many she is under 18 and ineligible, or ineligible because she's started chemo already. Am I being unrealistically hopeful?

My 2 year old son is undergoing chemo therapy. I see a lot of parents say “when my child is sick, screen time is a free for all.” I totally get that and would be that way too, whatever it takes to make sick kiddo feel ok until the illness has passed. But what about when your kid is “always” sick. My son almost always feels unwell due to chemo. He’s not able to play physically for long stints of time and he needs to veg out and relax a lot…we do slow paced activities like play doh, sensory stuff, read, sit and play with toys, puzzles, etc. but he asks for the TV a lot and is starting to cry when I turn it off. He’s at this point having about 2 hours a day; 1 hour AM, 1 hour PM..so already over the “recommended limit.” Some days an addition 1/2 hour or so if he’s really feeling low. (This will naturally lessen with the nicer weather). But I should also note that he is very bright. An advanced talker ~ full on sentences / conversations with us, counts to 15 independently, knows all shapes and colours, most letters, fantastic memory. He gets lots of face to face play and connection as I am home with him every day and get down and play/engage with him several hours every day. So do I need to be worried about 2+ hours of tv a day at all? I should also note I am an anxious parent who over thinks everything about my sons development. 😅

How would you address his frustration with me turning it off and the excessive asking for it he sometimes does? Thanks! (Favourite show is Thomas: all engines go, not the most educational show, but relatively slow paced and no aggressive or violent content, sometimes watches Elmo’s world, Ms. Rachel and Blue’s Clues).

Does margins involved mean there are cancer cells around? I’m having trouble understanding this dermopathology report for my 4 year old’s skin biopsy.

Entire pathology report:

LEFT KNEE: R/O SPITZ NEVUS MELANOCYTIC NEVUS, JUNCTIONAL TYPE WITH SPITZOID FEATURES. MARGINS INVOLVED INTERPRETATION IS LIMITED IN THIS SHALLOW BIOPSY. FURTHER SURGICAL INTERVENTION IS ADVISED. (D22.72) GROSS DESCRIPTION: The specimen is received in formalin, labeled with the patient's name, identifying requisition number, and consists of a portion of rubbery tan tissue measuring 3x3x1 mm. The base is identified with blue ink and the specimen is entirely submitted in one cassette. 1 block(s). MP

Hello, my nephew have Wilms tumor stage 1 he got it remove and got radio and quemo. After the treatment they did a scan to see if he was cancer free and found a cluster of lymphatic nodes. He will get a contrast on wensday but I wanted to know if someone has experience similar to this. Sorry English is not my first language.

Hey guys,

I am Joe and my 4yo son was diagnosed with a Grade 1 Glioma this fall. The MRT has first shown the tumor and the oncologists have been worried it could be a pontine glioma for two months - pure hell.

We had a big relieve with the current diagnosis. Right now we undergo chemo treatment with two different drugs and wait for the molecular analysis of the tumor to may get addiotional treatment options.

The spot is about two inches below his knee on his right shin. He is an active happy kid and jumps around and lands on his knees a lot which causes doctors to ignore this dark spot. It does hurt to push down on it or push down around it - kind of like a bruise, but more burning like feeling.

We’ve seen four pediatricians from two different offices over the years and they all say he’s healthy and ignore it - but why won’t it go away and what can we do to make sure it’s not something horrible or life threatening? If nothing else it causes him pain when he jumps around, and he’s subconsciously letting it affect his clothing choices and behaviors because he’s embarrassed by it.

Sorry if this doesn’t belong here - hoping to find some support since the doctors around here seem dismissive.

Hello I hope I’m allowed here! My son and daughter do not have cancer but an incredibly rare genetic condition called xlp2 which acts like a cancer and requires chemo and a bone marrow transplant to survive. My son is currently in the thick of it and was diagnosed at 2 months old. His BMT will be once he is 6 months old.

His sister is just a carrier for now. But it is possible that could change.

Unless there are some amazing medical advances their children will have this disease too.

I’m a carrier but had no idea until my son got so sick.

This disease effects one in 500 million. My son is one of 100 active cases. There are no support groups for xlp2. I was hoping to find support on here but I understand if I am not welcome.

Just let me know

How do you live with the fear of it? My son was diagnosed with AML Leukemia on April 7th, he is currently receiving round 3. He’s got one more round to go. As much as I’m looking forward to life post treatment, I’m scared that it’ll come back. The fear feels crippling. To the point that I just want to quit my job and stare at him because what if time is running out.

For those that say do therapy. I am in therapy and actually I am a therapist, but this is something I have never encountered before in my 34 years of life.

Hi, Reddit. I made this account just to make this post, because at this point my worries have made it nearly impossible to sleep. I am not sure if this page allows pre-diagnosis discussion, but due to the severity of what this most likely is I pray that someone will be able to help me, as I really need it. This could be life or death. To get right to it, I'm suspecting that I have a form of primary breast angiosarcoma. I'm a 15 year old female. The survival rate of this cancer after 5 years is 35%. While this may sound absolutely ridiculous, the lump/lesion that has formed on my breast completely resembles what this cancer looks like, and isn't just a bruise or a lump from breast growth. The lesion is a sort of deep blue with a hint of purple (the blue is what scares me the most and what makes me the most certain that this is agniosarcoma). The entire thing is very shiny at certain angles and has unclear edges that just diffuse into my healthy skin tone. Underneath the visible lesion is a hard lump that is around the size of a penny that I suspect to be a sort of tumor. I took a few photos, but unfortunately my camera is not the greatest, especially for color rendering. The lesion and bump have also grown in size since my original discovery of them, further leading me to fear that this is something serious. I have not injured the area or irritated it at all. Please help me, I am fearing for my life.