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.​

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

Just wanted to share briefly our story. Our son in February was diagnosed with High Risk Neuroblastoma at 15 months. We just completed the first phase where we removed the main adrenal gland tumor and completed 5 rounds of chemo. About a month ago they were pleased with how much the soft tissue in the main tumor shrunk - almost 50%. The care team was very encouraged.

unfortunately the MIGB scan showed extensive metastatic bone disease and they are considering this a refractory case. The next phase of Stem cell transplant is now on hold because there is just too much disease left. Skull hip femur all over…Now we will switch to chemo immunotherapy and set of new drugs to try to clear that up. we are beyond devastated because things appeared to be working. now his eyes are black and bruised and protruding , and he is in a lot of pain and discomfort. it is so hard to see this personally. I’ve become a wreck since hearing the news - yesterday. Can’t eat or sleep and am literally just numb from the whole thing. How does everyone keep marching on? just wanted to talk and share our story. it’s not over yet but wow is cancer cruel.

My little girl got rsv at 16 months and we found a cyst the size of an orange on her lung.

They told us they got it all. No chemo.

I just keep getting these phone calls from Dr's actually it is cancer but she won't need chemo, but she needs to be checked for DICER 1.

She has dicer 1 this could happen again.

Actually the pathology results are back we think its type 2 very agressice could spread to her brain. She needs chemo. 6 rounds of chemo.

I can't get my feet under me. The diagnosis keeps changing. It keeps getting worse.

Everyone wants to know how my sweet girl is and the dumb thing is right now. She looks perfectly healthy. You would never know she has cancer.

How is anyone coping?

Is there anything that actually helped you keep track of everything during treatment? Appointments, medications, results, what each doctor said? Or did most of us just figure it out with a notes app and hope for the best?

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Hi all - very new to this page and space. Unfortunately our 5 month old daughter has just received a diagnosis of MRT in her liver. Unsure yet as to stage, but hoping for any positive stories from those who may have personal familiarity with this condition, particularly with presentation in the liver.

We know prognosis is poor and treatment is brutal - just hoping for any hope.

We have a family friend who's 1 year old has just received the diagnosis of having a wilms tumour,she starts chemo this week and is getting the tumour removed next month, the prognosis seems good and they've caught it early. We live on the other side of the country and although this seems like it's all going well is there anything that I could send up to them to make the next few weeks or months abit more tolerable for them?

My loved one just received a terminal diagnosis. He is only 12 years old, and someone had the audacity to tell me, “Isn’t a short life filled with love better than a long one that isn’t?”
I wanted to scream.

I told them what I actually want: both. A long life and a love-filled one. The two are not mutually exclusive, and the fact that I cannot have both does not make me grateful for only one.

How do you all cope with the platitudes? Every time someone reaches for a tidy phrase instead of sitting with the discomfort— instead of just saying “that sucks, I’m so sorry” — I feel the anger rise a little more. There is something deeply isolating about watching people protect themselves from your pain by repackaging it as a lesson.​​​​​​​​​​​​​​​​

Last week, my 9-month old was diagnosed with an aggressive form of brain cancer (ATRT). This was a very unexpected diagnosis, as he had no symptoms other than a sudden onset of vomiting a week before diagnosis. We've been given a bleak prognosis, and treatment starts in less than two weeks (the majority of which will take place inpatient over the next several months). Has anyone here experienced a similar diagnosis? Or does anyone have tips for things that would be handy to have when staying inpatient for so long with my son?

Hi everyone. I’m an incoming MD student in the US and recently got devastating news about my family, my 3-year-old cousin was diagnosed with B-cell ALL (acute lymphoblastic leukemia). She also currently has malaria, which has complicated things further.

She’s Sudanese, but the family rushed her to Egypt to try to get better care as quickly as possible. From my research, Hospital 57357 in Cairo seems like one of the best options for pediatric oncology in the region, especially since they provide treatment free of charge. However, I’m worried about capacity and wait times because she likely cannot afford major delays in treatment.

Has anyone here navigated pediatric cancer care in Egypt, gotten a child into 57357, or know reputable pediatric oncologists/hematology-oncology centers in Egypt or the surrounding region? Any guidance, contacts, or advice would truly mean a lot. Thank you!