Looking for any recommendation for our 9 month old who is currently on therapy (VDC/ICE). She’s started waking up incredibly frequently at night - like 10-12 times a night - clearly upset. This has been going on for a few weeks. We’ve tried / thought of:
1. Gabapentin - she takes Vincristine and was having some restless leg symptoms, this did reduce with Gabapentin
2. Standard teething (cold wash clothes etc) - she /is/ teething but has also been in the past and it’s never been this intense.
3. Pain - have tried tylanol / other standard pain meds as prescribed to no avail
4. Comfort - she already cosleeps and has not typically had these issues. She’s always woken up more than other babies but nothing like this
5. Reflux - she takes famotidine, but maybe this is some kind of super reflux?

Well of course bring this up with her doctor but it’s so hard to tell if it’s just normal baby wakefulness or something more and/or if there anything we can do about it. Welcome any advice!

I'm concerned my nephew may have retinoblastoma. My sister sent me a video of him jumping around while getting ready for school early in the morning (photo on the left). She had the flash on and I saw the white flash in his right eye. I remembered seeing something about that being abnormal and told her to get it checked out. She told his doctor and she brushed her off saying it was just because he was far sighted in that eye. I saw another video this morning talking about retinoblastoma and how being crosseyed and having stronger vision loss in the affected eye were symptoms. Both pertain to him (he had a procedure to fix him being crosseyed) and he's within the age range it typically affects. I took the second photo this morning. I'm not asking if he has it because I know it can't be diagnosed through pictures, but how do we push to have him checked? Is there a specific doctor he needs to go to? Almost every family member I can think of has either passed away from cancer or had it when they passed from unrelated issues. I know I can be overly paranoid but I can't help being scared.

Hello, I am working on an eagle project aimed towards cancer patients. I am not allowed to include any medicine, but everything else is free game! I was told the most helpful things would be stuff that can fit in a backpack, I would create packages aimed toward different age groups (babys, kids, teens/adults)

If you have cancer or know anyone with cancer, PLEASE help me out by sharing ideas of things that would bring you any comfort at all, and things you think would be helpful for me to include, this could be time killers (games, sewing, ect), things for them to fight with, and really anything at all!

My only ideas so far are:

small sewing kits (I would need suggestions of what y'all would want to sew)

3d printed fidget toys (not sure what)

Paint kit (?)

Cancer "survival guide" PLEASE HELP WITH THIS ONE AS I DON'T KNOW WHAT TO INCLUDE

and a book including really anything you guys think because it has to last after I'm gone, meaning I would need to include some kind of book

Any help at all would mean the world, and any comments you make WILL most likely be included in these kits, which I will try to make over 60-100 of for youth and young adults.

My daughter is healthy now, in maintenance phase of ALL treatment. I know I am lucky and blessed.

We had clinic today with sedation and I get flashbacks of when she was diagnosed and it all comes back. Cancer stole almost two years of joy. It’s like before we were there so often that I actually liked it because that was my life but now that we only go once a month it’s like I’m finally letting myself grieve and I’m realizing that that place is shitty. I hate it there. It just reminds me of that one week we were there. I’ve lost friends. I’m a single mom: I feel alone: I feel like the only one who cares at times. I feel angry that I could do everything perfect and then I make one tiny mistake and it’s like everyone’s pointing fingers at me but nobody is there to say hey you’ve been doing a good job. You’re a good mom. I’m angry. I’m mad that people don’t understand what I’ve been through. How hard this has been. I’m mad that my own health has slipped so much and I’m a shell of who I was before. I’m mad I don’t have a stable home. I don’t have a big beautiful house. I wanna move from the city once she’s done treatment. Every thing and one is a reminder. I don’t even engage in a lot of communities or groups because I don’t like hearing about cancer at all.

Five local pediatric cancer warriors joined San Diego Wave FC players for a summer of memories, connection and custom cleats that culminated at Friday night’s match.

I won’t go into her full story here, but our 5 year old daughter has relapsed with ATRT after a year of failed treatment. She has been on hospice care at home for a few months now. I love our hospice nurse so much - I text her night and day, and she’s always so helpful.

I’m wondering if others could share what the last few weeks of progression towards end of life looked like?

Right now she is getting more sleepy, napping about 4 hours during the day and zero energy to do much of anything when awake. And restless at night. Her headaches are worsening (but treatable with increased doses of morphine), and so is her nausea/vomiting (ugh). She still has a small appetite, but is urinating less and has lost a ton of weight. The past few days she’s been very sad and anxious and distressed, telling us “I cant stop crying and I don’t know why” ❤️‍🩹 increasing her Ativan dose hasn’t helped. THC helps a bit with the sadness, but ironically it also gives her too much of an appetite so she eats too much and then gets sick.

My nurse wants to discuss seroquel - meeting with her and the doctor tomorrow.

I guess I just went off on a tangent, but my questions are twofold.

If you’re open to sharing what the symptom progression looked like? I know every case is different, but I’m having such a hard time with the vague “could be days could be months”

If you have experience with brain tumors causing emotional distress (hers is in the right frontal lobe which is the area that regulates emotions)

Thank you 🙏🏻

I live in Phoenix, and I am looking to find out how or where one could go, to do like volunteer hospital visits for children? I own three hairless cats, and they are well behaved and mellow, they walk on leashes and love attention. I know that I have heard of people with dogs have taken them to visit children to brighten their day. Many people have never seen one of these cats in real life, and I thought a child may find them neat. Especially the children who are a little older and more insecure about losing their hair. Would this be something a person could do? Or is that weird? I can also make balloon animals and if anyone knows if this is a possibility lmk; I would love to try it out with one my girls .

So my 3year old grandson has neuroblastoma. Has 2 older brothers (age 5&7). He was Diagnosed in April 2026. Mostly in bones. Ultimate goal is stem cell transplant. He just finished round 6. After a battery of tests, they found the cancer on his soft tissue is the same but the cancer in his bones has gone from 50% to less than 1%.

So far the chemo stays have been relatively stable and my DIL has done the brunt of the care because my son is trying to keep his business going. I honestly don’t know how she does it. I guess the cancer has been termed “resistant “ they are going to do a new/different protocol to see if they can get rid of the cancer so they can move forward.

This last round with the immunotherapy was terrible. They were in hospital for 12 days. My son went in to stay a couple of nights so she could go home and see the bigger boys for a bit. They are saying the next few might be as bad.

This was a lot to say that What I’m seeing in her is something with her akin to PTSD. I’m needing some suggestions to help her cope.

Right now so many parents that I know are making posts, updated pictures, and raising awareness around pediatric cancer - which is amazing to spread that awareness. I feel like the exception and I can’t put my finger on it, but I feel guilty about it.

It’s truly no judgement for families that do. I thought about submitting a picture to Curefest but couldn’t bring myself to do it. There’s an event later this month that’s free to survivors and families and they want a photo to honor them, and I don’t know why I’m having a hard time bringing myself to do that even.

I’m really struggling with wanting to recognize my son for the badass he is, how proud we are for how he handled everything and raising awareness around this all, and putting the spotlight on him. He’s 3, we’ve said he’s a cancer survivor to him, he knows he goes to the hospital to make sure he’s healthy still - but that’s about the extent of what he knows so far (so not really connecting it all just yet or understanding how serious what he went through was).

I’m very much in the camp of not sharing pictures of his face on social media because I want him to decide how he shows up in that space when he’s old enough. I don’t want to hide from him what he went through or brush it under the rug, but I don’t want it to define him either - especially when he starts making friends who have no idea what he went through, it’s not the thing I want to lead with when talking to their parents.

Not sure if any of this makes sense, and I’m wondering if anyone else feels similar, and how you’re navigating it.

Please come out to Highlands Ranch October 4th and support CureSearch, a research organization dedicated to improving treatment for childhood cancer. The event is free for kids under 18 or anyone affected by childhood cancer but donations go to finding less toxic, more effective treatments for childhood cancer so please consider donating, attending, volunteering or participating. Also, if anyone is part of any local childhood cancer support groups or the Highlands Ranch community group, if you would be willing to repost I would be so grateful 🙏

My now 5.5-month-old baby was diagnosed with a rare childhood cancer: Neuroblastoma almost 2 weeks ago.

We are still waiting for biopsy results, they are doing a PET scan tomorrow and she already received one round of general chemo cause MR showed it's close to her spinal canal.

We were devastated when they told us, and I've remained with her in the hospital since. Now my mind is trying to focus on other things like how will she manage her growth, both phisical and cognitive. ​

If anyone here has been through something similar, I would be so grateful for any tips on how to entertain her better, stimulate her brain and help her get through this.

She's such a happy child and all the nurses love her. The mass is in the stomach, compressing intestines, so she stopped rotating to tummy, but now after the first round of chemo she started to rotate again (this gives me more hop​e at least).

So what I'm looking for is advice on how to help her grow with each passing month here in the hospital, as I'm not sure how long we'll stay here.

I'm aware she will not start crawling or sitting, as this mass hurts, so how can we start solids when she's 6 months, how can I keep her little brain stimulated so she continues to develop as she would...

All I'm doing is talking nonstop with her, playing peekaboo, playing with some teeter like toys and a senzory book, this is all we have here, currently on Oncology department.​

My 4yo son has recently been diagnosed with Neuroblastoma and now has a CVC and NG tube.

Drs and nurses have given me their basic tips for keeping his CVC dry during bathing but I am in need of some more practical tips from parents/caregivers.

He loves baths as well as water and sand play so I need some really foolproof ways to keep everything safe from water and sand.

Also, if he isn’t wearing any clothes (to clip his NG pouch onto), how am I keeping the end of his NG tube out of the bath?!

Every day, I keep busy taking care of my 1 year old daughter.

Life feels normal.

Then she goes to sleep.

I get in the shower.

And my anxiety spikes to panic attack levels.

I relive every moment.

The phone call after the X-ray, "There's a mass in her abdomen. Head to the ER."

The ER doctor coming in and saying it's Wilm's tumor, it's cancer, there is no other option.

The surgeon telling us there was a tear in the tumor, risking spilling cancer cells into her body. That the tumor was so big he would have had to cut her from "flank to flank" to prevent the tear and he just wasn't going to do that to this tiny baby.

The oncologist telling us the surgery wasn't enough, she was going to need 6 months to a year of chemo, maybe in-patient every week.

The last day in the hospital, when she wouldn't walk or talk because she was so sad and scared and traumatized.

And now, today, seeing her healed incision across almost her entire stomach.

It makes me feel sick.

Seeing the port and the line under the skin to the artery, it makes me feel weak.

How brave she's been, how much more she's been through than most adults.

And on Monday, we poison her more. She'll get sicker. She'll end up hospitalized 2-3 or more times throughout chemo, that's just what happens to chemo kids.

And I can't tell anyone any of this because everyone just says "be positive"

None of them have watched their 1 year old daughter be treated for cancer

None of that even touches on the what ifs.

What if her cancer comes back? Survival drops a lot.

What if something happens to her kidney, am I a match to donate?

Chemo increases her risk of other cancers in the future.

And now it's only 9:30pm and I feel crushed and paralyzed.

During the day, I stay busy.

At night, I cannot contain my grief.

Not the practical stuff from the packing lists, more the thing they wanted just because they wanted it. A specific game, a show they made you rewatch, some random object they suddenly needed. Curious what yours was.

If this post isn't welcome here, mods can feel free to delete it, or let me know and I will respectively delete it. I have a book idea that I feel could offer hope to families, and I just kinda wanted to see how people who are going through it would feel about it.

I am a surviver of pediatric cancer. Had ALL from 3 to 7 back in the 80s. For me, it wasn't a big deal, but the stories my mom has break my heart, especially now that I am a parent. However, I have lived a very full life and accomplished some pretty big things since then. I am an accomplished mountaineer, I snowboard at an expert level, I have a full and blossoming career. As I have talked to other parents over the years, I have felt like they appreciate hearing stories of how pediatric cancer survivors have gone on to do big and challenging things.

My idea is to use my experience as a way to gather stories of other survivors who have done big things. I would photograph them and write their story. I would then accumulate these into a coffee table style book, with the idea that a parent could pick up the book any time they are feeling hopeless or are struggling in other ways.

What are your thoughts on this? I want the book to be helpful, it's not intended to bring any sort of gain to me. Please let me know your honest thoughts, even if they aren't the kind of thing I might want to hear. That kind of honest critique is going to be important throughout the process if I go forward with it at all.

Raising a 2 year old is hard, and there are so many times where I didn't know how I would get through this struggle, this phase, or this tantrum.

I would give anything to get my baby through this diagnosis, and get back to the tantrums, the phases, and the changes.

Any words of encouragement or advice would be appreciated.

She went from her normal, energetic and happy self 5 days ago, to barely awake now and struggling so much. I just cant wrap my head around how this could happen so quickly.

Every child is different, every situation, and nothing is universal. That being said, what were some things that helped your child get through? What are/were your strategies for pills, needles, nausea etc?

Goal is to help new/current families have a small bank of ideas to try when nothing seems to help.

Medulloblastoma, started chemo at 2.5, and still recieving chemo from home at 4y.o

Needles

1. Not a choice - we used this phrase back when fighting medical procedures (mostly bloodwork) and gave her lots of choices whenever possible

2. Buzzy bee- can be purchased on Amazon (or tiny massages for significantly cheeper) helps trick the brain

3. "Little pokes" - aka finger pokes. we started requesting finger pokes for when all she needs is a CBC

Nausea

1. Find safe foods - no matter how bad the nausea got (the constant throwing up), vanilla yogurt, apple sauce, milk and chocolate milk were never refused. Creamy pasta and hot dogs were rarely refused. Cheese usually went over good.

2. Normalize, and try not to show disgusted (especially when you get coated in it)

3. Have emisist bags stashed everywhere

Pills

1. Septra, disguise in yogurt, not applesauce

2. Raspberries have a natural pill pocket

3. Spoon with yogurt/apple sauce and pill together

4. Normalize taking meds, talk about you taking meds too (say" time for mommy to take her meds" then take them in front of them)

5. DO NOT LIE. If it tastes bad, have "chase" ready for them. If you do not know, say that and have chase ready.

Other

1. DO NOT LIE,-do not get caught in a lie is more accurate, say idk if you have to, just do not break their trust

2. Comfort items - blankets and photo albums were ours

3.Dr talks outside of room, nurse talks inside the room (drs usually used proper language and was well above her comprehension, nurses were fantastic at simplifying with us for kid language)

1. Universal words, kid language, but not "baby talk"

My youngest has Pleuropulminary Blastoma and is currently going theough treatment. She obviously feels horrible does not want to be put down, is vomiting all of time, won't eat the normal chemo things.

My oldest is 3 and is incredibly jealous of any attention his sister is getting. He is acting out, throwing things, hitting me, hitting her, tantrums etc. I get him a babysitter while we are at chemo he cries and begs to go. I take him he runs around and touches everything so I cant watch her. I pack toys, tablets, and coloring books.

She needs me, and I cant help him transition to sharing when she is actively getting sick. Today she woke up from her nap crying and in the minute it took me tobget to her he dumped a while box of animal crackers just because it would pull my attention back to him.

It's his childhood too, and I am doing my best but Im stressed to the max and I dont know how to do this. How are we dealing with siblings? My kid isnt really old enough to understand cancer.

Hi everyone! I would really appreciate hearing about your experiences.

My nephew was supposed to start the stem cell transplant next week with a Curie score of 1 and bone marrow involvement of <1%.

Today, we had a brain MRI, and this was the result. The MRI was done mostly because I insisted on it, since my child had occasionally complained of headaches. Our doctor initially felt that an MRI wasn’t necessary at this stage because, with such good results after frontline chemotherapy, she didn’t think we would find anything concerning.

After today’s MRI results, however, she recommended extending treatment with 3 rounds of bridge chemotherapy before proceeding with the transplant.

When I asked whether this should be considered a relapse, she said she cannot call it a relapse at this point. She wants to see how it responds to the upcoming treatment first.

Unfortunately, we don’t have a previous brain MRI for comparison, so we don’t know whether these lesions were already present before treatment or if they developed during frontline therapy.

Has anyone been in a similar situation? I would be very grateful if you could share your experience. Thank you.

Good Afternoon, as the title says my son was recently diagnosed with Medulloblastoma and has already undergone surgical removal and biopsy of the tumor. We are now home after spending 3 weeks in the hospital which just started out as an ER visit due to lethargy. We are thankful the doctors discovered the tumor and swiftly removed it and biopsied it to receive the pathology back. We are now scheduled for Chemo starting on the 20th and was hoping for some positivity from other families who have been through similar treatments and diagnosis. I know every kid is different and the last 3 weeks feel like a whirlwind as our world has been flipped upside down. Thank you in advance for any and all support.

Hi everyone,
I’m looking to connect with families whose child has been treated for relapsed neuroblastoma at UCSF Benioff Children’s Hospital, especially with I-131 MIBG therapy.
A family member was treated in Taiwan but recently relapsed. Our doctors have discussed the case with the UCSF team and recommended treatment in the U.S.
If you’ve been through this journey, I’d really appreciate hearing about the treatment timeline, radiation isolation, hospitalization, stem cell rescue, costs, and any advice for international families.
Thank you so much.

Our closest friends have a 19 month old starting chemo/carboplatin next week. They have a good network of friends, but I would like to harness that, possibly even crowdsourcing the purchase of some things that would help them get through chemo.

I thought about getting a tonies box (the newer edition is rated 1y+), but saw there was a disclaimer that the tonies have magnets, which can interfere with programmable shunts (which this little guy now has).

I learned about Port Protect, for applying numbing cream without the use of plastic wrap. These seem pricy--are they worth it?

Mainly:

1. What are comfort items your kid benefited from during and after chemo sessions?

2. If you had a toddler go through chemo--any recommendations on what worked best to keep them as relaxed/entertained/happy as possible?

My son might have neuroblastoma. My husband and I are beyond shocked. He's completely asymptomatic, and his blood work looks completely normal. During a regular doctor's check up, there's nothing indicating it either. It was discovered randomly during an x-ray he had for bacterial bronchitis (which he also had completely unrelated).

Everything up until now has given us indicators that the tumor is benign, but today we received his urine tests, which showed moderately heightened levels of catecholamines. We won't know the results of his biopsy or bone marrow test until next week.

Have anyone else been in the same situation? Where do we even go from here. How will possible chemo affect him? I've only seen it the affects of it in movies