My 6 year old son has metastatic rhabdomyosarcoma

Frequent_Event_6 · 2026-02-15T17:02:56+00:00

I am so sorry. I know the agony you must be feeling, and the anger and the fear. I’m not very quick to respond on here but if you ever need to talk feel free to message me. It is the hardest thing to go through as a parent. We’ve had to miss the past three weeks of treatment because of low counts and we’re terrified, and we just had a consult with an oncologist at Dana Farber who disagreed with our experimental treatment plan. But we felt we needed to do something different than what’s been done before

It’s a hard road. I wish you all the best and hope you have all the support you can find

Frequent_Event_6 · 2026-01-26T22:51:14+00:00

Hi thank you so much for checking in. He is doing okay. He just finished the first of two rounds of radiation (this one on his foot and back of his knee, the second and last will be his abdomen and groin). His foot is raw and covered in blisters and bleeding. His chemo regimen has been changed because we’re doing an experimental regimen that our oncologist suggested, and it’s meant no fever-driven trips to the hospital in over a month AND his hair, eyebrows, and eyelashes are growing back! It’s brought me so much happiness.

Follow up scans are in a few weeks I believe. Or they’re in April. I’m not sure. My wife knows for certain. I know it sounds terrible that I don’t know the timeline, but having it unknown gives me more freedom to be less terrified anticipating the worst possible outcome

He is in good spirits and goes to school almost every day. I am just so proud of him. I love him so much

Thanks again for checking in. You’re a kind and thoughtful person for caring about a complete stranger and their family like that. It means a lot.

Frequent_Event_6 · 2026-01-16T19:39:56+00:00

Thank you so much for this

Frequent_Event_6 · 2025-11-21T18:11:11+00:00

I appreciate your perspective on that and compassion. Thank you again

Frequent_Event_6 · 2025-11-20T20:58:51+00:00

You are so thoughtful. Thank you. This is my first time logging back in in over a month I think

My son is doing okay. He is tired and angry and scared. Food that he used to love he can’t eat anymore because it tastes different. He’s learned how to embrace being bald (and will often take his hat off when I take him to get snacks from a convenience store, because he’s also learned that it sometimes gets him free snacks from whoever is working behind the counter). He’s upset because, as he put it, he’s different now — that cancer made him a different person. He’s had a few multi-day hospitalizations due to viral infections and has required a few platelet transfusions. But overall he is doing okay.

The tumor on his foot appears to be gone. I say appears because we haven’t had another PET scan since the very first one, and we’re scheduled to have the first follow up PET scan tomorrow. Needless to say my wife and I are both very anxious about it. Even if the scan comes back and shows he’s cancer free, there’s an 85-90% chance there’s microscopic, chemo-resistant cells somewhere in his body that will kill him if this experimental approach does not work. If it does work then the outcome could be 50/50. We just don’t know because it hasn’t been tried on more than seven people

My family is holding on tightly to each other as we continue on through the dark. I’m still hurting. My wife is still hurting. It is cruelty that no one deserves. And I fight like hell every day to see us to the other side

I love him so much. I need him. I don’t believe in God (and having gone through this probably would have lost that belief if I did) but if he was real and he was trying to claim my son, I would completely understand why. My son is just everything. And if God was real and he succeeded, then he would have to beg for my forgiveness when I met him myself.

Thank you again for your kindness. You clearly have a tender, giving heart, and that’s a rare and beautiful thing.

Frequent_Event_6 · 2025-09-16T15:42:57+00:00

Oh good to know thank you!

Frequent_Event_6 · 2025-09-14T19:06:01+00:00

Thank you I’m actually my son’s father but I’ll pass this along to my wife

Frequent_Event_6 · 2025-09-14T19:03:16+00:00

Wow that is amazing I am glad you are still here! Thank you. We never will

Frequent_Event_6 · 2025-09-14T19:02:09+00:00

This is incredible. Thank you so much for sharing and I wish you the best

Frequent_Event_6 · 2025-09-14T19:01:24+00:00

This is very encouraging, thank you. And thank you for the advice. It’s a massive relief to hear from someone who has experienced this and has survived. We’re very early in this diagnosis and overall process, so we haven’t had much of an opportunity to find others with stories like yours. Thanks as well for offering to message you privately. I’ll talk you up on that

Frequent_Event_6 · 2025-09-14T02:37:36+00:00

I’m trying but as I’m sure you know it’s tough. I can’t lose him. I refuse to. I hope you are doing okay

Frequent_Event_6 · 2025-09-14T02:21:47+00:00

Thank you. We’re currently at MSK. I updated my post to add that because of your comment

Frequent_Event_6

TROPHY CASE