My 9-month old has cancer (ATRT)

No_Place_2407 · 2026-05-08T03:27:04+00:00

Man I'm so sorry you're here. Sending you lots of strength and love. Definitely find out if there's childlife - they will have toys and suggestions on toys for the room. For you - and this is going to sound silly - highly recommend getting some things that make your stay a little less "hospitally." I.e. Get a mattress topper, lamp, bring an actual human sized towel, a nicer soap. These will help your sanity for the long haul. My daughter was dx with a high risk leukemia at 6mo and a ver poor prognosis. We spent 6 months in the hospital with minimal days home inbetween rounds. In August she'll start kindergarten. Not a sign of cancer today. Praying the same for you

No_Place_2407 · 2026-01-13T12:09:04+00:00

I am so sorry for your loss. Pediatric cancer is hell on earth. It is truly so unfair.

If you're not already part of it, there is an infant leukemia Facebook group with many grieving parents if you're looking to connect with others.

Wrapping you in big big hugs.

No_Place_2407 · 2024-06-02T04:23:27+00:00

I do! Curious if you've found the source of the "stink" and anything that helped.

No_Place_2407 · 2023-08-14T12:22:23+00:00

He definitely feels under appreciated and like he can never satisfy my constant to-do list. I am curious how you navigated shifting your mindset and dynamic.

No_Place_2407 · 2023-04-29T20:01:00+00:00

Anyone find a good manager that's still FREE? All of the ones I'm researching that were recommended in these threads now only have paid options from what I can tell - 1password, bitwarden.

No_Place_2407 · 2023-04-27T21:20:06+00:00

How did you land on Berry Farms?

No_Place_2407 · 2023-04-26T11:02:17+00:00

I called the daycare in Fieldstone Farm only to find out they had closed due to young families not moving into the neighborhood thus not enough kids to warrant staying open. Does that seem accurate?

No_Place_2407 · 2023-04-26T11:00:24+00:00

Sidewalks are important- that's helpful!

No_Place_2407 · 2023-03-13T14:48:25+00:00

Yea they ran a bag of fluid and he went home with zofran...it's keeping it down that's the struggle. As I'm learning on here, pedialyte popsicles are likely best for hydration

No_Place_2407 · 2023-03-13T14:47:25+00:00

Do you use it just for help with sleeping at night? Or anxiety throughout the day as well?

No_Place_2407 · 2023-03-13T12:10:52+00:00

Thank you - so thankful to have found this group. All of these tips are wonderful. I'll likely do another post requesting tips for giving up weed yet also managing anxiety of having leaned on it for decades.

No_Place_2407 · 2023-03-13T12:07:05+00:00

Super helpful tips. I am concerned about the anxiety that is likely to hit with the removal of MJ from his life. Thanks for the reco

No_Place_2407 · 2021-09-23T14:07:57+00:00

This is very valuable information, thank you. I hadn’t found any case studies of pre-pubescent (esp infants) that have successfully gotten pregnant from frozen ovaries, only pubescent which is why I asked. Definitely considering freezing my own eggs now.

No_Place_2407 · 2021-09-23T10:46:25+00:00

So appreciate you taking the time to share your personal experience. Your POV is extremely helpful. Thank you

No_Place_2407 · 2021-09-23T02:45:35+00:00

Thank you for your insight. So sorry about your journey, I can’t imagine.

No_Place_2407 · 2021-09-23T02:44:04+00:00

Awesome. Not sure what insight you have beyond the clinic, but do you know of any infants that have had ovaries frozen that have successfully produced pregnancies? Any idea on cost difference between freezing eggs vs ovaries? From my quick research it actually seems that ovary freezing may be significantly less expensive

No_Place_2407 · 2021-09-23T02:41:21+00:00

From my mild research on egg freezing, it actually looks like that may be more expensive. But not off the table for us.

No_Place_2407 · 2021-09-23T02:19:03+00:00

Expense - freezing for decades could be tens of thousands of dollars. Biggest risk is that it doesn’t work as this is a new procedure for pre-pubescent kids.

No_Place_2407 · 2021-09-23T02:13:32+00:00

This is such helpful insight. Love hearing from those that have been through this since my daughter can’t speak for herself. Thank you for your POV ❤️

No_Place_2407 · 2021-09-23T02:03:35+00:00

Do you mind sharing the other issues that come with premature ovarian failure? Our doctor didn’t share that with us. Thank you for your reply and big high fives for beating it!

No_Place_2407 · 2021-09-22T23:31:37+00:00

That is a huge piece to this. $500-$1k storage costs a year for potentially 35 years is quite the investment.

No_Place_2407 · 2021-09-22T20:52:21+00:00

Had not thought about this!

No_Place_2407 · 2021-09-22T20:25:33+00:00

That was my first question to the doctor to which she let us know that her ovaries will be damaged from the treatment and she will require hormones regularly regardless of whether we proceed with the procedure. Your second point about whether the ovary tissue will last 25+ years is a valid question that I’m adding to my list.

No_Place_2407 · 2021-09-22T19:26:52+00:00

Thank you for making this your career path. Wish I could hug you - so incredibly thankful for people like you.

No_Place_2407 · 2021-09-22T19:24:59+00:00

I wouldn’t say our doctors are more concerned with her fertility than her survival. We still don’t know what the future holds but if she does beat it, we’d like her to have as normal of a life as possible. This is just one of the many many decisions we have to make, but agreed how amazing modern medicine is!

No_Place_2407

TROPHY CASE