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.

Hi everyone!

Our team at SickKids is developing a survey called FACE-Q: Ophthalmology to help patients share their concerns about their appearance due to eye conditions and treatments.

If you or someone you know is affected by retinoblastoma, strabismus, corneal anesthesia, or someone who wears a prosthetic eye, we’d love your input! Anyone 8 years old or older (children and adults) can participate!

Why Participate? Share your experience to help us test and validate this important tool — we need 800 participants!

To learn more and participate, you can head to: https://twitter.com/SickKidsNews/status/1796613852689285601

Thank you for your support!

Hello all. My son is 3.5 & was diagnosed with "low risk" b-cell ALL one year ago.

He is currently in maintenance therapy. We are being treated at Dana Farber so we r on their treatment regimen.

Something keeps happening that's been bothering me. He keeps getting low grade fevers. Not always enough to trigger fever protocol... more like 99, 99.4, 99.7 etc. This is strange for him because I'm a crazy person when it comes to temperature because a fever was his primary symptom at diagnosis.

I'm really confused as to why this is happening. Team doesn't get concerned until it's 100.4 though.

Has anyone else dealt with this during treatment?

Hello,

My five-year-old daughter has a very complicated history and I was hoping someone might offer some insight. We have seen a geneticist, oncologist (before the blood work listed below), nephrologist, endocrinologist, and others not relevant.

She has Schimmelpenning syndrome, but an atypical presentation - no visible large sebaceous nevi. She has increasing fatigue for more than one year and is barely growing. She has had mildly elevated liver enzymes and blood calcium since at least age three. In the past she has had Smudge Cells and a blood smear revealed mostly small form lymphocytes, some with cleaved nuclei and cytoplasmic projections.

She also has low PTH, high calcium, what I gather to be elevated PTHrP, and elevated blood protein. The PTHrP result came in today and her doctors have been unreachable with the July 4th holiday.

I am concerned about hypercalcemia of malignancy.

Here are the relevant results:

PTH, Intact - 6 pg/mL (Ref Range 14-66)

Calcium - 10.6 mg/dL (Ref Range 8.9-10.4)

PTHrP by LC-MS/MS, Plasma - 5.3 pmol/L (Ref Range not established)

Calcium, Random Urine - 1.2 mg/dL (Ref Range not established)

Vitamin D, 25-OH, Total - 45 ng/mL (Ref Range 30-100)

Vitamin D, 1,25 (OH)2 - 76 pg/mL (Ref Range 31-87)

Phosphate (As Phosphorus) - 4.5 mg/dL (Ref Range 3.0-6.0)

Urea Nitrogen (BUN) - 19 mg/dL (Ref Range 7-20)

Creatinine - 0.29 mg/dL (Ref Range 0.20-0.73)

Ionized Ca++, Uncorrected - 1.27 mmol/L (No Ref Range)

Ionized Ca++, Corrected - 1.27 mmol/L (Ref Range 1.09-1.29)

Total Protein - 8.2 g/dL (Ref Range 5.9-7.3)

Albumin - 4.9 g/dL (Ref Range 3.9-5.0)

IGF-1 LC/MS - 43 ng/mL (Ref Range 37-272) Z-Score (Female) is -1.7 SD (Ref Range -2.0-2.0)

Has anyone had experience with hypercalcemia of malignancy in a child?

There are many more lab results, so please comment if something else would be helpful.

Thank you 🙏

I had cancer 30 years ago as a 3 year old... I wrote this as a tribute to my dad for father's day. I have a 3 year old son. I hope I'm half the father he is/was. Much love to all the beautiful parents out there fighting for their kid. They won't forget it!

I don’t talk about it much, but 30 years ago I was diagnosed with childhood cancer. It was so long ago, quite frankly, I don’t really think about it too much. But after becoming a father myself, it hits differently in retrospect. When I think about it, I never feel any sorrow for myself even as the only vivid memories that remain are physically challenging ones. Instead, I always feel sad for my parents who had to experience a sick child. I can’t, and don’t want to imagine what that felt like. In fact, one day years later I found a folder in my dad’s office buried in a drawer. The folder contained documented notes written by my dad about my chemo/surgically-induced progress. My understanding is he was concerned about malpractice, and wanted to document everything that was happening. Reading the words “Nick forgot how to walk today…” and “the vomiting finally subsided..” etc. was crushing to read. I barely got through a page of it before losing it emotionally… I remember vividly for the first time understanding (even as a teenager) the magnitude of suffering my parents had to of gone through. Crushing experience…While some scars remain, the years that followed are some of my favorite memories with my dad. He’d take off work to drive me to many follow up appointments at the Philly pediatric hospital. On the road trip, we’d specifically bump jimmy Buffet and the Forest Gump soundtrack. To this day, any time I hear the Volcano song, it transports me back to those days, hanging in the car jamming out to tunes with him. Beautiful memories. Through it all, my dad made me feel safe. He held me while they stuck tubes down my nose. He carried me to the surgical table because I lost the ability to walk. He held my hand when getting jabbed with IVs. Through various techniques, he helped me take the chemo… Most importantly, he kept my spirit up by shielding me from the challenges and helping me, as much as possible, to remain a normal kid. All the while taking care of two other young children with my mom… There’s a Bhudda proverb that mentions “Even if you were to carry your parents on your back for 100 years, you would not be able to repay them for all their care, nurture, and protection.” This might not be true for all parents, but it definitely is for mine. Happy Father’s Day to my dad. I hope I can be half the father you were/are to me.

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?

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?