r/neuroblastoma • u/InternetNo8640 • 20d ago
Baby born with neuroblastoma
hello, my 12 week old baby was born with neuroblastoma on his left adrenal which was found at our 21 week anatomy scan. At first they thought it was a broncho pulmonary sequestration which is benign lung tissue, but since he was born and his urine test was elevated they now think it’s neuroblastom. We are on a watch and wait plan, with ultrasounds every 6 weeks. the first ultrasound when he was 6 weeks the mass had shrunk and then follow up yesterday at 12 weeks it was unchanged. I’m devo about it and want some good news stories please to cheer me up
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u/Amiiblee 20d ago
I’m sorry that you’re going through this right now. Slightly different but my son was diagnosed at 10 months old with the primary tumor in his neck. We did 4 rounds of chemo and that shrunk the tumor to basically nothing. He’s 3 years old now and you’d have no idea what he went through - he just has a couple of neck scars from lymph node biopsies and a scar where his port was.
Depending on where you’re located, we got a second opinion from MSK. They recommended the same course of action as our home hospital but it was nice having the confirmation from them.
The Facebook group “Neuroblastoma you are not alone” is also way more active than Reddit. It was nice connecting with other parents who were going through the same treatment at the same time, especially since neuroblastoma has such a huge range of treatments depending on the risk.
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u/InternetNo8640 20d ago
Thanks for replying, so glad your son is doing well now! We are in Melbourne Australia so at the royal children’s hospital here. A second opinion would be great, I just don’t know what to expect from here, but obviously my brain is going to the worst case. It’s so hard!
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u/Amiiblee 20d ago
It’s SO hard - especially in the beginning when you’re still learning about all the nuances of their diagnosis. I also found it helpful to find some kind of distraction in the beginning. I played a whole lot of Mahjong and Wordle like games to stop myself from doom googling (which I did my fair share of too, it’s hard not to).
Usually kids diagnosed under 12 months have a better prognosis than over 12 months. I hope the best for your son and that they handle treatment well.
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u/feralcomms 20d ago
My son was diagnosed at 5years old (2019) with stage 4, myc gene positive, aggressive neuroblastoma that had spread to his bone marrow. He had a tumor the size of a cantalope behind his intestines, pressing down on his kidney's.
Our ped. onc., told us that 15 years ago we would be talking end of life-care, not treatment. He went through 7 rounds of chemo (which shrunk the tumor enough for a 12 hour surgery), 2 stem cell transplants, radiation, and 6 months of immunotherapy (all during covid!) and then followed by an 13 month efficacy trial for an anti-neuroblastoma vaccine—not to mention the 3 times a week at clinic for blood draws, etc—and then usually ending up back in the hospital after he would become neutropenic post-chemo.
He just passed his 5th year in remission. He has some hearing loss and has to wear aids, and a couple of scars, but he is a thriving, tall, 12 year old.
It was never easy, but children are resilient and the medical technology today is making (and has made) huge strides. My suggestion is to stay off the internet and things like webMD, because you will see stats that will send you into a spiral, but a lot of the treatment is very individual based on metabolization, etc.
Pack a couple of go-bags with comfort items for you and baby, and pay attention to fevers a few days after chemo.
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u/This-Grape-5149 18d ago edited 18d ago
Thank you for sharing your story. We are hoping to get to something like this. My son was diagnosed 11-Feb of this year. We had the bruised eyes, his Currie score was a 25 I believe. High Risk Amplified. We just got thru 4 rounds of the chemo and they removed the main tumor last week. It’s been so overwhelming. We have 1 more round of chemo. Then scans in early June to determine if we can do the Sten Cell transplant. That part is really concerning to us. We are in Iowa. Every day is one day at a time but I’ll be honest it’s difficult. He is 18 months so he was diagnosed around 15 months
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u/Eggnogallyearlong 18d ago
This sounds so similar to my daughter. They found it on my 33 week scan, and she is also in watch and wait right now. Hers has been generally getting smaller, but it's been up and down a bit lately. Her onc is still okay with watching and waiting but said we may do a "nudge" of chemo should anything change. She's now 18 months old, and otherwise fantastically healthy.
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u/UTK2026 1d ago edited 1d ago
Hello, my sister aged 2 was diagnosed with Nueroblastoma she did all sorts of treatments including radiotherapy the doctors told my family to take her home as she was given 6 months to live it turned out a treatment my family used (without the NHS or any other official medical advisors) it killed the tumour and she was given the all clear aged 9 she is 16 doing her GCSES hoping to one day become a vet. May god bless your baby and your family ( i forgot to add she was stage 4 a tumour in her stomach she is likely not have kids)
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u/username_dan22 20d ago
My daughter was in the same exact situation, except it was on her right adrenal gland. In the very beginning it was very tough. My wife and I had countless sleepless nights. Ultimately it was decided that the sit and watch plan was best. Weeks turned into months which turned into years. As the time passed, the tumor shrank and the tumor grew. It was all over the place. When she was almost 4 years old, it grew to the point of concern and it was decided it’s time to have it removed. The surgery took around 5 hours and the doctor was able to remove 100% of it! Of course there have been follow ups to check and we go once every 6 months just to make sure nothing is back. However there is no reason to think it will come back.
Today is her 7th birthday.
You found it early. You’re able to watch it and see what it does. If it goes the wrong direction you’ll be able to remove it. The issue is when you unfortunately don’t know it’s there and it grows. By the time you find out it’s too late.
I’m sorry this is happening to your family, but you all will power through it!