if it's a one parent family and child is in hospital for long periods of time and i as the mother truly just need a second to breathe. i just want to sleep. but i can't . my son has been admitted to hospital for a total of 31 days I've been here day n day out since we got admitted 7 days ago. i was able to get a room at ronald mcdonald house which is intended for families that have someone that is admitted in hospital or has appointments multiple days in a row. but i am at a loss here😔 it has been so hard on my mental health and physically also i feel like my body is disinigrading 😔 i also have no financial help other than a couple friends and family so i have been doing merchandising at retail stores from 9pm- 12am for past two nights ( which was my lrevious job through out wholw year 2024 but its extremely hard to keep a job or work in general while hoping my baby son beats cancer 😭😭😭 if someone could please give me some input or advice or something .... i just feel guilty and like im an awful mom for needing a breather . 😭 and also the staff at said hospital has made me feel even worse. and demands i spend every second of the 24 hours everyday bedside. and if nit they will call child protective services😔 i am tired i am broken and i cant take much more. if anyone has any advice you have no.clue how much i appreciate it thannk you😭

if it's a one parent family and child is in hospital for long periods of time and i as the mother truly just need a second to breathe. i just want to sleep. but i can't . my son has been admitted to hospital for a total of 31 days I've been here day n day out since we got admitted 7 days ago. i was able to get a room at ronald mcdonald house which is intended for families that have someone that is admitted in hospital or has appointments multiple days in a row. but i am at a loss here😔 it has been so hard on my mental health and physically also i feel like my body is disinigrading 😔 i also have no financial help other than a couple friends and family so i have been doing merchandising at retail stores from 9pm- 12am for past two nights ( which was my lrevious job through out wholw year 2024 but its extremely hard to keep a job or work in general while hoping my baby son beats cancer 😭😭😭 if someone could please give me some input or advice or something .... i just feel guilty and like im an awful mom for needing a breather . 😭 and also the staff at said hospital has made me feel even worse. and demands i spend every second of the 24 hours everyday bedside. and if nit they will call child protective services😔 i am tired i am broken and i cant take much more. if anyone has any advice you have no.clue how much i appreciate it thannk you😭

Hi everyone,

My 15-month-old niece has recently been diagnosed with retinoblastoma. Unfortunately, her right eye has lost vision due to the tumor. The left eye has a few very small cancer particles, but thankfully they are not in the vision area, and she still has 100% vision in that eye.

The doctors have begun treatment on her left eye using a freezing technique and lasik to remove the cancer particles. For now, they’ve advised against removing the right eye. Additionally, chemotherapy has been started.

I would greatly appreciate any insights or advice from this community regarding the following:

• Was anyone able to keep an eye with tumor with no issues?
• What foods should she eat during chemotherapy to support her health?
• In the long run, are there specific concerns we should be mindful of to ensure her overall wellbeing and prevent recurrence?

Any guidance or support would mean a lot. Thank you!

My 5 year old daughter has had a cough since August. Originally diagnosed as bronchitis, treated with azithromycin and nebulizer, no improvement. Sent to allergist and diagnosed as asthma, given 2 inhalers and 4 allergy meds, no improvement. Started having stomach pain, occasional diarrhea, body aches, low grade fevers, several swollen lymph nodes present for at least a month one was rather large causing ear pain. Had biopsy 2 weeks ago and still haven't heard results. Have a follow up scheduled with the surgeon for incision check on the 7th and follow up with hematology/oncology on the 21st. She was given a CT but they said they didn't see anything. So we still have no idea what's going on.

Hi all! My 18month old nephew was just diagnosed with b-ALL. My sister and her husband are at St Jude with him now getting care and they have care starting tomorrow. Wanting to get suggestions on what to send them/how to help? I live about 3 hours away but can be there anytime. Trying to give them space to get settled. Feeling overwhelmed and helpless and looking for ideas or suggestions on items they might need.

He gets his port in tomorrow am and is getting a bone marrow biopsy as well. She mentioned they will need clothes that accommodate his port and items like that.

Any and all suggestions are helpful and I thank yall in advance for help.

my nephew battled acute myeloid lukemia two years ago, diagnosed at 7 months old. he is almost 1.5 years in remission, but i have a really hard time listening to my friends talk about their kids. they complain about their kids not sleeping, feeling sick, how hard it is, ect. but i cant feel bad for them, because i literally watched my sister and brother in law sit in the hospital for 7 months while my nephew did treatment.

it makes me have to change the conversation, or walk away. because it makes me so angry that they dont understand. not that i want them to. they just dont get how hard it is to deal with. i had to watch my sister suffer while he battled cancer. he was so young that now he doesn't even remember but my faimly and i are left with scars.

how do i get past the angry feeling of other people discussing the hardships with their kids? ive built up a LOT of anger about it. and it makes me feel guilty for it

my nephew battled acute myeloid lukemia two years ago, diagnosed at 7 months old. he is almost 1.5 years in remission, but i have a really hard time listening to my friends talk about their kids. they complain about their kids not sleeping, feeling sick, how hard it is, ect. but i cant feel bad for them, because i literally watched my sister and brother in law sit in the hospital for 7 months while my nephew did treatment.

it makes me have to change the conversation, or walk away. because it makes me so angry that they dont understand. not that i want them to. they just dont get how hard it is to deal with. i had to watch my sister suffer while he battled cancer. he was so young that now he doesn't even remember but my faimly and i are left with scars.

how do i get past the angry feeling of other people discussing the hardships with their kids? ive built up a LOT of anger about it. and it makes me feel guilty for it

My son is a neuroblastoma survivor and currently 6 months in remission. I’m so grateful for how he handled treatment and how he’s doing now, but the constant fear and anxiety around relapse and losing him is persistent and crippling. I’m sure most all parents with healthy kids also have these concerns but it just feels like something next level after experiencing pediatric cancer. Every little symptom from run of the mill illnesses sends me into a spiral.

Does it get better with time? What helped you all overcome these feelings? I don’t want what I’m feeling to overshadow the good times while we are in them.

Hi everyone. We just found out a week ago that my sons Wilms tumour has come back. This time in his lungs. He had surgery Monday (Dec 2) to remove two lung nodules. He starts chemo again next Thursday (Dec 12). He was first diagnosed in September 2023 at the age of 2 and had his kidney and tumour removed. Then went through 6 months of chemo. Has anyone else experienced this? Or a relapse of any sort? Looking for some positive support

I just heard that my best friend's daughter was diagnosed with leukemia at 2 years old. I live far away and would like to send the parents a package with things for them and their child. I'm thinking books and a blanket for the baby, but unsure of what the parents could want or need. If anyone wouldn't mind giving me ideas.

Hello,

My name is Niamh Flanagan, I am a youth cancer survivor and I am currently in my final year of studying Product Design and Technology at the University of Limerick. As part of my studies I have recently began my Final Design Project on the topic of Facilitating Play within Childhood Cancer Treatment.

As part of my research for this project I have put together a survey for the parents of children with cancer to gain insights and knowledge from your child's experiences. I understand that this is a very sensitive topic, and no questions are required, but I would greatly appreciate any responses that you are willing to give.

I have the survey linked below, and I greatly thank anyone who is willing to participate in my research.

A Parent's Perspective on Their Child's Cancer Treatment

I'm new here. New to Reddit. My 7 year old nephew was diagnosed with neoplasm of the spinal cord. Two extensive surgeries over the summer. 3 month MRI showed the cancer still there. They meet with the team Monday about target chemo. Can anyone give any hope or information? Anyone deal with this? We are all so lost. I'm trying to help my sister in anyway I can.

When my son was diagnosed with ALL in 2010, a colleague who worked with an animation studio in the Netherlands sent us a Paul and the Dragon DVD. Anikey Studios had made a 22-minute film using no words, just music and lovely visuals to explain cancer to kids. The film mixes reality, fantasy, and even some humor. My son was the perfect age for it, and it helped his sibling as well. I just realized it looks like it was never shared on this sub.

The film is free and can be streamed here: https://vimeo.com/54352642

Story:

Paul is feeling sick and needs to go to the hospital. After several tests he is diagnosed with cancer. He does not understand what is happening to him, and what the medications are doing. He feels scared and alone. His doctor explains to him that the cancer is like a dragon in his body that needs to be fought. As a true hero, young Paul fights the dragon, together with the medications and the love of his family, and wins.

This film is for children with cancer and their families. The film portrays the child with cancer as a hero who has to battle an evil dragon living inside of their body. In this exciting humorous metaphor, children will also learn about problems and issues that can arise when a child has cancer. This visual representation of cancer is intended to initiate conversation about what is happening, and help alleviate the fears the child may have.

Created, directed and animated by Albert 't Hooft and Paco Vink. 

Animation Studio: Anikey Studios. 

Producer: il Luster Films Foundation, 

executive producers: Arnoud Rijken and Michiel Snijders. 

Music: Maarten Spruijt. 

Sounddesign and mix: Bob Kommer Studios. 

With many thanks: Paul Sanders.

Copyright: il Luster Films / Paultje en de Draak Foundation / Anikey Studios. All rights reserverd.

Thank you for reading and any advice is appreciated. 4 days ago my niece woke up with a growth and this coming Monday she will start 4 months of chemo! This has been shocking and traumatic for the whole nuclear and extended family. My wife and i are numb and I can only imagine what the parents are going through. My niece has a younger sibling and her twin sister. Both of them have been acting out and thinking of ways to help, we've thought of getting books that would help them understand what her sister is and will be going through. Can anyone recommend some?

I hope this makes sense... I'm mentally wiped and don't feel coherent. Thank you and blessings to you and your loved ones.

Hi, I’m a 17 yo childhood cancer survivor. My experiences in treatment sparked a passion for medicine and I’ve wanted to pursue it since then. I missed two years of school to hospitalizations, but managed to pick up the slack afterwards and graduated hs at 15. I’m now in my 2nd year of pre med and my passion hasn’t changed, but I’m scared. Treatment left me with a lot of chronic health issues and I’m still primarily a patient. I still have a cvc, need infusions and injections, pt, constant appointments and scans, blah blah blah. I really really want to work in pediatrics, but there’s two big obstacles that keep me up at night.

1. Medical school and residency is ridiculously hard and works students to the bone for no really good reason. I could not physically do a 24 hour shift, ya know? I need to pace my body. I can’t afford the grind in a way other people can. If there are any healthcare professionals on here with advice on how to navigate this, please let me know. But problem one isn’t my main reason for posting here.

2. I’m probably not gonna live a super long life. I’ve got it way better than so many of my friends (I’ve inherited the Lego collections of 4 separate kids who wanted a fellow enthusiast to keep theirs in good condition). But I don’t necessarily have the “you’re young and have plenty of time” card that many other students would. I don’t know how long I’m going to live. But I’m at enough risk to have made an unofficial will with my child life specialist and social worker. And when I consider the conditions of a medical education against the backdrop of an uncertain lifespan I worry that it’s not worth it. That it’s a waste of time. I’m scared of spending my precious time here on the wrong thing. But I want this so badly. Any advice would be so appreciated.

Hi there, my daughter had cancer as an infant. she had 2 years of chemo, steroids, and radiation. now at 11 her adult teeth are either missing completely or have almost not roots. even her 12 year molars, that haven't erupted already have broken, and have cavities. they referred us to an orthodontist to see if we can stabilize her teeth for a while. but I want to know what else is out there that I don't know about.

hello! i'm an undergrad bioengineering major in senior design, and my assignment for now is to talk with professionals in clinical settings on what they believe unmet clinical needs are, so that my team can eventually narrow down to a specific problem to work on for the project. our field of choice is currently critical care for pediatrics/PICU, but we may also look at pediatric physical therapy or peds occupational therapy.

if anyone has PICU/pediatrics clinical experience and would love to talk about their day-to-day work in the care units, common problems they struggle with in their jobs, etc. please send me a message or comment below!

we would also be interested in talking to patients/their families who have been in PICU and could give insight firsthand on what it's like to be treated there, what they would change, etc. anything at all would be appreciated. thank you so much!

Hello everyone,

I am a stage 3 neuroblastoma survivor who participated in clinical trials during my treatment journey. My experiences inspired me to start a company dedicated to helping families navigate the complex world of pediatric cancer treatments and hospital options.

My goal is to create a comprehensive resource that empowers families with information and support as they make critical decisions for their child's care. I am trying to have conversations with families who have been through similar experiences.

If you or someone you know has been through pediatric oncology treatments and would like to contribute, please reach out over messages. Your voice and expertise are invaluable and would help me a lot :)

Please reach out over messages!

Thank you!

Hello,

I run a childcare and one of my infants recently had to disenroll due to a cancer diagnosis. I am trying to put a gift basket of items together that would be most helpful for the family. Gift cards to restaurants that deliver to the hospital, soft blanket, engaging smaller toys, and CLOTHES. This is where I was hoping you all could help.

Is there a specific brand or type of onesie that makes it easy for the hospital and the child if they are receiving treatment via chemo or radiation?

Thanks in advance!

Kiddos about to start next week and not sure what to expect. Anything I should look out for or be aware of? Any tips would be greatly appreciated. ❤️

This is an update to my original post. My daughter was able to see a dermatologist for the two swollen lymph nodes. The dermatologist did lab work, because they were concerned about the night sweats and my daughter's recent decrease in appetite. Her labs look concerning to me. The PCP said she's anemic and likely has a viral infection, without seeing my daughter. My daughter is not sick, and has not been for months. She's only had diarrhea and a fever for about 5 days four months ago. Do the labs look worrisome?

Thank you for the advice!

My son had hives at 3 months old. Peds said it was hives, did labs and had low neutrophils and high lymphocytes so we chalked it up to a virus. Hives have still persisted, seen an allergist and dermatologist and at his age, no solutions other than viral or chronic hives. We redid labs at 6 months and neutrophils are lower and lymphocytes are higher. Peds throws around the idea of leukemia but he has no other signs- growing, gaining weight, happy and healthy other than some reflux which he seems to have outgrown, no bruising or petechiae, no swollen lymph nodes. No fever or sign of sickness other than a cold at 2 months that he got over in a week or so and fever post 4 month shots that resolved after 24 hrs.

My mom brain goes to the worst thanks to Google. Waiting for our pediatrician tomorrow but anxious in the meantime. Any ideas?

My 11-month-old daughter has had a lump on the side of her ribcage for about 6 months. I can also feel a lymph node on the back of her head on the same side as the one on her ribcage. I took her to two pediatric providers, the first one said it was a lipoma and they would not order an ultrasound for her and the second provider said it was a cyst and ordered an ultrasound because I was worried.

The ultrasound showed it was a lymph node, and the provider seems to think this is fine. I don't know anyone with a lymph node that just sticks out unless they are sick or something else is wrong with them. She is not sick so I am worried about the possibility of lymphoma.

I attempted to get a second opinion with a pediatric oncologist but they denied my request saying it was inappropriate since her ultrasound did not show anything concerning. They proceeded to tell me to follow up with her PCP. I am very frustrated and concerned. I'm unsure what to do next. Am I overconcerned or should I keep trying to get further testing?

I’m a nursing student, currently on a peds inpatient oncology unit - patients usually stay for min 2 weeks.

As a student, I spend a lot of time with the kids and parents, getting to know them pretty well. I was a sick kid, so to a degree I understand what it’s like in the system, but I’m not a parent.

I spend so much time with families, I’m scared to say the wrong thing. My question is - at the beginning of the treatment process, when everything was new and your kids didn’t want to take their meds and had to go through stuff that genuinely sucks, what helped? (If anything)

Psychosocial support isn’t within my scope of practice as a student, but I’m there as general support - if you’ve ever had a provider do or say something that really made a difference at the beginning, I’d love to know! (I’m also open to any advice you might have for a future nurse in this area)

My five year old has to take 6 methotrexate pills and has not quite learned how yet.

Any recommendations on how to mask the metallic taste of methotrexate? Any foods I should avoid mixing it with? Any help would be greatly appreciated.

Hi guys, I hope it's okay to share a resource, apologies if not. I just know a lot of kids and teens with cancer are missing out this summer, whether they're stuck in the hospital or at home and wanted to share. Where I live there's a summer day camp that's literally exclusively for kids with cancer, which is so amazing for the ones that can go, but obviously too many kids are actually to sick to make it (and obviously in other parts of the country too). They have a virtual camp for kids and teens (I think it's aimed at kids who are in hospitals, but for sure this is for anyone) that I wanted to share.

Summer is such a shitty time to be sick but maybe this will help, if anyone is interested. I know they have young young kids stuff and older stuff like for teens. It's like a virtual summer camp that they make videos for. I know they also do like actual events that the kids can join on zoom, so maybe check out their website if that appeals to anyone too, but if you just need some fun vids to entertain then you check out their youtube.

I hope this helps someone!

My son was diagnosed with PLGG at 6 months old. It’s been a whirlwind since then but he’s had a resection surgery, a shunt implanted, a mediport implanted, and a shunt revision. We’re also 13 weeks in on a 60 weeks minimum chemo regimen.

His 1 year birthday is 2 months away but will be here before we know it. With his immune system compromised from chemo + can’t get his baby vaccines, we know we can’t do a “typical” 1 year birthday. We feel bad because we want to celebrate him and want our families to have that opportunity too, but his safety is more important.

I could use help coming up with ideas for a first birthday that feels special while also being safe. We know first birthdays are more for parents than kids, but so what? We want to have those pictures to show him, and we deserve to celebrate him and have that sense of semi-normalcy amid all this.

We currently live in Tifton, Ga but are willing to travel if necessary. My 13 month old had has strange results from labwork since she was 1 month old. Recently she has started getting more and bigger bruises unexplainable. This last round of labwork was alarming to her new pediatrician and she would like us to go to a hematologist. The one we saw today brushed it off and said keep her updated if she doesn't get better because she "doesn't look sick". I am terrified but I am at a loss. I need to find someone that will search for answers now and not when she looks sick. Any suggestions?

Our four year old was dx with RB. We are set for Wills Eye Center and Dr. Carol Shields.

I was not impressed with Shields office. It felt almost like a factory with all of the patients being shuffled in and out. The staff was extremely stressed out, arguing between each other, and shaking in front of the doctors presence.

The doctor said since our son is so medically complex and fragile so chemo wouldn’t be an option and he would need to remove his eye.

I’m just not sure if I’m making the right choice. I was doing some research and although Wills Eye Center is number 3 in the country, my gut feeling is to get a second or third opinion at Memorial Sloan Kettering Cancer Center, New York and/or Boston.

Anyone have any insight on Carol Shields? (All of the docs at our local children’s hospital have praised her and said she is so great) but my gut feeling is just not feeling so well.