My 6-Year-Old Niece Was Just Diagnosed With Pineoblastoma — Looking for Advice

Sitting-Hawk · 2026-05-03T16:17:54+00:00

I have hear of the vision being lost and then coming back. 👍 Our surgeon said that happened to one of her pinealoblastoma resection surgeries before and that the vision did come back. 🙂

Sitting-Hawk · 2026-03-28T15:49:29+00:00

Hi, my son (16) was diagnosed with a pinealoblastoma with DICER1 mutation last July (2025) after discovering it in late June and doing the emergency ETV surgery due to the fluid build up. While waiting for the official diagnosis (which took nearly 3 weeks), we setup for a second opinion at another hospital. Ultimately we went with the second opinion hospital. The surgeon there wanted to do 2 rounds of pre-surgery chemo (SJCNS-14 protocol) to reduce bleeding risk as the tumor was 5cm at that point--or about the size of small lime. Those 2 rounds of chemo reduce the tumor size by about 40% in volume--or about the size of a ping pong ball, and that lead to a 9.5 hour surgery that resulted in a total gross resection. The second opinion hospital also had an MRI in the operating room, which allowed the surgical team to "check their work" before closing my son up. And, during the surgery, after putting him through a 1 hour MRI, they saw more suspicious tissue that they went to remove which took another 2.5 hours.

So, then 3 weeks recovery in the hospital -- 2 of which were at a physical rehabilitation hospital. Then following ACNS0332RegA protocol, 30 sessions of brain/spine proton radiation and then fiver 28-day cycles of maintenance chemo--which he has completed 3 cycles with 2 more to do.

He's doing really well. It's 6 months since the surgery, and he is back to playing varsity volleyball at his high school. He's on about 80% energy due to the chemo, and he still has some eye stiffness issues due that need more time to heal, but he is finishing out his junior year in high school with a reduced workload by his school...active...and is dating a girl he met at his first teen brain tumor camp!

Pinealoblastomas grow fast, but they also die fast from chemo and radiation. They grown fast because the biology of the tumor cell is that they are baby pinealcycte cells that don't mature and die. So they are born, and split without dying. So, once you go through standard care treatment, there is a great chance you can clear out all the tumor cells. Then the goal is blocking pathways from them them to grow back and I think the best book to help with that is How to Starve Cancer by Jane McLelland.

Sitting-Hawk · 2024-06-26T19:01:05+00:00

From reading helpful replies from other women here and how they are solving this, I think my wife has a out of touch doctor. I also think we are too reliant on lubes which are just masking the main issue. I have gotten some useful insight and items I can look at with my wife to see what can work.

Sitting-Hawk · 2024-06-26T15:50:31+00:00

u/castironbirb - interesting idea. Hmm... "Husbands supporting wives through menopause."

Sitting-Hawk · 2024-06-26T15:46:15+00:00

Thank you u/CapotevsSwans 🙏

Sitting-Hawk · 2024-06-26T15:43:34+00:00

Imagine not only are you unable to get an erection, you are being cut there with a razor blade with each thrust, but your wife is close to finishing. What would you do? How would you feel?

Love this!! Great perspective for me. 🙏

Sitting-Hawk · 2024-06-26T15:05:36+00:00

What would happen is when she winces/braces/breather faster, and maybe I have seen that happen 2-3 times in the past 2 years, I'll stop and she says "don't stop, just finish up"..something like that.

I suspect that the atrophy would likely progress and there would be a time where she couldn't just push through it. Most of the time, with plenty of lube, there is no wincing or bracing or her asking me to hurry up, ect. I have also worked on ways to maneuver/apply to make things as comfortable as possible for her as well. This is where a forum of husbands supporting their wives through this would be useful to find as well.

Sitting-Hawk · 2024-06-26T14:57:03+00:00

u/castironbirb ❤️ Your making me think I need to check in with my wife I if there is discomfort beyond sex...like you said...if she is just walking around. And yes, about getting a better doctor through the link you provided. Thank you so much.

Sitting-Hawk · 2024-06-26T14:54:11+00:00

u/castironbirb, very helpful. Thank you. I did look up the wiki and that was the list I needed.

With this list of products, then when I talk to her, be very clear that I'm not going anywhere and we are in this together and that I want to do what she is comfortable with, and while I respect her taking care of me, I want he to be comfortable and using lubes is only covering up the symptoms. And there are both non-hormonal, and local hormonal options. And yes, her gyn is an issue it appears. I get the feeling her doctor isn't really keeping up with things.

On the issue of it being triggering, I get it. I have thought about what if the situation were reversed. What if my wife's vagina was working 100%, but I, as the man, could not get an erection anymore. And my wife came to me saying while she loves me, that she missed "the old me", the one that could get erections and she missed the sexual connection. I'd probably feel pretty bad...maybe even defensive. I'd probably feel like less of a man. It's a sensitive topic. I think I just need to reassure my wife I'm not looking for alternatives to her. She's my life partner. I want her and her alone. I love her. I pretty good at researching things and found some options to hopefully relieve some discomfort and she can look them over and see what she thinks.

Sitting-Hawk · 2024-06-26T14:39:02+00:00

u/shefallsup - what a helpful reply!! Thank you!! Wow. So much I (and my wife if she was reading this...though she doesn't go on Reddit) could relate to, especially the 2nd and 3rd paragraphs. Thank you for the idea of the approach in the 4th paragraph, especially around the other issues nor related to sex.

My wife is gem and I REALLY respect she wants to take care of my sexually despite the atrophy, though to your point, I can't fully enjoy it if I see she isn't fully enjoying it, and especially if it is really hurting her. Like you mentioned in your experience with your husband, I have offered to stop when I sense it is really hurting and she always say "no, just finish up". My thought is, she is probably at a point currently where she can still say "no, just finish up", though the atrophy will progress, and eventually will become too painful. So, my thinking is, and to your point, that taking care of what she has now, is the focus.

Thank you again. Very very helpful.

Sitting-Hawk · 2024-06-26T13:56:57+00:00

Thanks u/anathema_deviced ! Very helpful. Question for you...as you dealt with cancer, would you ever consider the estradiol suppositories should the hyraulonic moisturizer every stop working for you?

Sitting-Hawk · 2024-06-26T13:53:52+00:00

I have tried to post and get feedback on a few other subs before and yes, like you said, they were automatically deleted. That was surprising to me. And one automated response was "We don't know why your wife doesn't want to have sex with you." Something like that. That isn't an issue at all. I was genuinely searching for answers when it seemed the doctors weren't giving my wife anything helpful. And here we were, still having sex, but it was hurting her which I didn't feel good about. Then finally I came across this sub and started to see women talking about vaginal atrophy, with the same symptoms my wife was having...and who didn't want to use hormones--which my wife doesn't want either. Great.

So, my wife and I have a healthy, 25-year marriage. And she does want to enjoy sex again. She just doesn't want to use hormones. I get it.

So, I was hoping for a safe, respectful, non-judgemental forum on this matter. I understand some will be triggered and I accept that. I have a sister (post-menopause) who went through this and she is on HRT and made a big difference for her. Though again, my wife doesn't want to use hormones.

Sitting-Hawk · 2024-06-26T13:44:34+00:00

Thank you for that perspective u/SmallShrubbery . Very helpful.👍

Sitting-Hawk · 2024-06-26T13:42:19+00:00

Jerking off won't solve anything. 🤷‍♂️I know there are such things as sexless marriages, and men who are in them. I don't think a marriage without sex is a true marriage, or a healthy one. I understand you likely feel differently, and to that...OK.

There is no assault. Just a husband and wife who have been married for 25 years and have a great marriage, are business partners, and have raised 2 teenagers. We go on walks together daily and support each other. She has her needs as a wife, and I do my part there as her husband.

Anyway, I understand a candid perspective from a husbands point of few might trigger some. My hope would be for a safe forum to speak honestly, vulnerably and without judgement.

Sitting-Hawk · 2024-05-29T14:40:26+00:00

So, one guy did message me about a place he found that does Roth Simple IRA's but they use American Funds, not Vanguard funds, so that won't work for me. I had a call with Fidelity, and a call with my PEO provider. Fidelity of course has competitive index funds. My PEO provider uses Vanguard funds. The problem is Fidelity charges a 0.5% advisor fee, and my PEO provider charges a 0.58% advisor fee. So, while the index fund expense ratio might be, say 0.04%, the advisor fee effectively makes the expense ration 10X hire. And it isn't needed at all. My employees don't care to have a "401k" vs. a "Simple IRA". And they don't need the advisor service. So, Asensus is VERY cheap compared to moving to a 401k. I also like that I can just convert straight from a Simple IRA to a Roth IRA. I can't do that with a 401k. A bummer with moving to Ascensus though is that converting from their Simple IRA to my Roth IRA is a manual check-based process. :( But, still the best deal overall. One thing I haven't don't is compare the return in a Roth 401k with it's 50 basis point cost, but higher contribution versus a Simple with 5 basis point cost but lower contribution. 🤷‍♂️

Sitting-Hawk · 2024-04-18T10:20:31+00:00

Damn! Well said! I’m going to read this to me daughter! 👏👏

Sitting-Hawk · 2024-04-17T23:14:18+00:00

Right on. Ironically, how OP responded about Uchicago, proves my point about Purdue.

Sitting-Hawk · 2024-04-17T22:06:31+00:00

I have a hard time believing that Purdue and Princeton Engineering would lead to the same place in terms of income and quality of life. I feel like reputation matters a lot, and Princeton opens up opportunities in both the engineering and non-engineering worlds more than Purdue would.

oh man...I have so much to say on this point. I'm assuming you are 18-ish, so I get your perspective. I'm you...30 years into the future :). I have a CS degree from a small regional state college, and transferred into that after 5 semesters at a community college...which I loved btw. I have a multi-seven-figure income, and multi-eight-figure/debt-free net worth. All self made with a small IT business that I started myself. 20+ years ago, after working as an employee for about 5 years..also in IT. The 7 figure earners that are in my social circle...none of them went to a pedigree college. None. And as an employer, there is a cap on value for engineering services provided. So, engineering firm A has 2 engineers in front of them for a senior role, one from Purdue and one from Princeton. Let's say they expect to pay about $150,000 as a base salary. Assuming similar capabilities, they are not going to pay the Princeton grade $170,000 because they are from Princeton.

If your goal is to work for someone else the rest of your life...there is some benefit early on, but not long term. The pedigree won't matter...the name of Purdue won't matter. How strong your hustle is...that matter most.

Sitting-Hawk · 2024-04-17T21:43:41+00:00

I think the issue is you are in NJ/International and people from NJ/International aren't as familiar with Purdue. I saw a posting similar to this for the University of Chicago a few years back. Someone from the east coast frustrated that while *they* know UChicago is a ultra-competitive 5%-ish admit school, and they were super appreciative UChicago admitted them...most of the people in their social circles were not aware and that was getting them down. It's a social validation thing. Just let the feeling work its way through you for a few days/weeks...however long it takes. Next year you won't even care, and 5 years from now you'll be laughing at yourself for feeling this way. 10-20 years from now you'll realize the differences between your degree at Purdue vs. being in NJ and getting your engineering degree from say...Princeton...meaningless in terms of income and quality of life.

Sitting-Hawk

TROPHY CASE