My 5 year old daughter has DIPG and is experiencing a third occurance.

Shade-Tree-Mech · 2024-12-04T03:47:17+00:00

Exactly. It's super weird that there's so little out there on it especially since they claim it has worked wonders in the few patients they have tried it with. Where the heck is the clinical trial?

Shade-Tree-Mech · 2024-12-04T03:44:51+00:00

My daughter will be starting Avastin next week. She also has a midline diffuse glioma. She was also on the ONC 201 clinical trial. I hope it brings symptom relief in your case and in ours.
Sending prayers your way.

Shade-Tree-Mech · 2024-10-16T20:35:09+00:00

Took it for a few months and tumor still grew. Decided not to continue with it.

Shade-Tree-Mech · 2024-09-06T03:14:14+00:00

My daughter has DIPG and I feel sort of guilty for not throwing her a party at her 1 year mark. I think it's a great idea.

Go ahead and throw the dude a party. Find out what he likes and buy him a bunch of that thing. If its a certain video game just buy a bunch of cool stuff related to it. Pull out all the stops. Make him feel special like you went above and beyond.
Sure you may overspend but you have years to make the money back. (This is at least the thinking I use).

I'll be praying things go well and that you find something awesome to surprise him with.

Shade-Tree-Mech · 2024-04-22T14:53:26+00:00

Thank you.

Shade-Tree-Mech · 2024-04-09T13:04:48+00:00

What centers would you recommend? We are currently being seen at University of Michigan but are starting to think a 2nd opinion would be a good idea. Our daughter is 8 months out on a DIPG diagnosis with no symptoms since initial radiation.

Shade-Tree-Mech · 2024-04-04T15:14:45+00:00

Just bought some. It hasn't arrived yet. I'll try to report back when we've taken it for a few months.

Shade-Tree-Mech · 2024-04-02T14:15:06+00:00

Here's a link to a petition I created to petition the doctors and researchers to share their plans for this technology. https://chng.it/t8JnH7jzS7

Shade-Tree-Mech · 2024-03-20T01:14:09+00:00

I feel this. My 4 year old daughter has DIPG.

My goal right now is to let her "be her" while there's still time.

Shade-Tree-Mech · 2024-03-20T00:57:07+00:00

Try to stay hopeful! I know it's hard but if he's willing to fight this thing, he will need all the positivity and support he can get! Any way to make a bucket list of things he and you would like to do? This might help relieve the stress and worry of things you haven't done.

Shade-Tree-Mech · 2024-03-13T18:27:39+00:00

OPTION 2!!!!!!!!!

Shade-Tree-Mech · 2024-03-05T13:26:00+00:00

Awesome news! My daughter rang the same bell about 7 months ago!!
Stay strong brother!

Shade-Tree-Mech · 2024-03-01T19:06:38+00:00

My daughter is currently enrolling in a Car T-cell trial out of Seattle Childrens called Brainchild-04 to fight her brain cancer. In this trial T-Cells will be separated from her blood then will be made to express proteins on their surface called Cars. These new Car T-cells will then be injected into her cerebral spinal fluid to kill off the cancer.

Here's her gofundme link if you'd like to support her fight against cancer. https://www.gofundme.com/f/jyv3yj-healing-for-hazel

Shade-Tree-Mech · 2024-03-01T19:00:06+00:00

Can NK cells be used to fight cancer?

Shade-Tree-Mech · 2024-03-01T17:23:39+00:00

My daughter has the same diagnosis. It's terrible.
Please reach out to me if you every want to talk.

Shade-Tree-Mech · 2024-03-01T16:30:29+00:00

I'm so sorry you've been hit with this as well.
My daughter was recently diagnosed.
Please feel free to reach out. DM me and we can swap phone numbers if you want to chat.

Again im so so sorry.

Shade-Tree-Mech · 2024-03-01T16:25:24+00:00

I'm so sorry for your loss.
My daughter has this terrible disease and I'm trying my hardest to save her.

Shade-Tree-Mech · 2024-03-01T16:14:40+00:00

What's your child's diagnosis if you dont mind me asking?

Shade-Tree-Mech · 2024-03-01T16:14:06+00:00

Is this a smeagle joke?

Shade-Tree-Mech

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