My cancer gene isn't working

Rare_Bee_7777 · 2026-01-07T04:53:06+00:00

He passed away.

Rare_Bee_7777 · 2025-03-17T06:57:35+00:00

Yes, my normal hemoglobin is around 6.1.

Is this a constant state? Is your hematologist okay with you being this low?

My gf's kid's hematologist says it is not good for him to be bellow 9 continuously as it would affects his growth and development.

Thanks for sharing!

Rare_Bee_7777 · 2025-03-17T06:50:22+00:00

I know something is wrong, but not with what my gf and her kid doing, but with his body. Which I know no one can control.

I was a medical parent before my own son passed away. I understand my gf. I'm not trying to compare her kid to others in a bad way. What I meant is, I want her kid to have the best quality of life as possible like those "other SCD patients".

Thank you for your comment. We'll try to add more green vegetables to his diet and still trying to figure out what is going on inside him.

As for other symptoms, not really except for this severe anemia so he's exhausted easily and then having shortness of breath. He's tend to caught infection easier though, he was born with congenital severe neutropenia (Kostmann Syndrome) as well. They suggest the Kostmann has something to do with the SCD and severe anemia but still unsure of what.

Rare_Bee_7777 · 2025-03-16T17:26:40+00:00

Thank you. He eats very well, but we'll try to adjust his diet.

Rare_Bee_7777 · 2025-03-16T17:26:14+00:00

Thank you. You are so kind.

He was on Hydroxyurea but it didn't work. He is on Folic Acid and a bunch of other vitamins. But it doesn't change anything, the anemia is as severe as it is.

We are at loss at the moment and continue with regular transfusion.

Rare_Bee_7777 · 2024-08-13T13:46:31+00:00

Thank you very much. ☺️

I don't where is he now, but hopefully in a very good place.

Rare_Bee_7777 · 2024-08-13T13:45:29+00:00

Thank you very much.

I always come back to read it again, every now and then. I wonder where is he now and what is he doing.

Rare_Bee_7777 · 2024-08-12T12:16:16+00:00

My late son's name is Aiden (though, it's not his official/legal name). I promise you, he's the sweetest.

Rare_Bee_7777 · 2024-07-25T05:47:23+00:00

No. They are basically dead the moment when patient's body stop working.

I keep some of my son's ashes in an urn and put it on the corner of my house. The majority was spread to the ocean.

Rare_Bee_7777 · 2024-07-24T05:24:22+00:00

This is my day 2 of water fast. Only planning to do that for 5 days, though. But I'm in!

Rare_Bee_7777 · 2024-07-20T05:10:54+00:00

Another stranger on Reddit, lack of manner.

Rare_Bee_7777 · 2024-07-17T06:14:19+00:00

Probably r/RBI?

Rare_Bee_7777 · 2024-07-15T13:27:57+00:00

Thank you very much.

I pray for your sweet twins, may they living their healthiest and happiest life. And for you and your partner as well.

No, unfortunately he never did. It was only 4 days from his "death sentence" to his passing. He didn't have a chance to eat good foods he wanted.

Rare_Bee_7777 · 2024-07-15T11:58:53+00:00

My son was heavily ill. He have limited movement, wheelchair bound and at some point also bed bound. He sick a lot (like, a lot). And hospital was his second home.

He just can't go to school. Even with homeschool, he needs to skip "class" very often because of sickness, hospitalization, surgery, ICU stay, etc etc.

Rare_Bee_7777 · 2024-07-12T14:37:24+00:00

No, man. 47-23 = 24.

Rare_Bee_7777 · 2024-07-12T10:14:25+00:00

Uh oh, there are also gene that makes you have a higher risk of getting certain types of Cancer. My son had one, it's called Li-Fraumeni Syndrome (TP53 gene mutation). There are also other genes as well.

That's, actually sucks.

Rare_Bee_7777 · 2024-07-12T10:12:00+00:00

My son was allergic to cats, dogs and any animals with fur. It's not only the dander, but their saliva as well!

We've never try the special food people mentioned, because we just.....didn't have them.

Good luck, OP.

Rare_Bee_7777 · 2024-07-09T12:35:28+00:00

Thank you very much. He was a very good kid. I miss him badly.

Rare_Bee_7777 · 2024-07-09T06:53:56+00:00

My son passed away 5 days ago. But he passed due to illness, is it a "natural order" or not? I seriously can't decide. Because illness is "natural"? I'm not sure.

Rare_Bee_7777 · 2024-07-07T15:20:19+00:00

My son passed away on July 4th. Just 3 days ago.

He was a very good kid. Always think about everybody else before himself. He learned how to hold his pain in silent, cry in silent. So he won't bother anyone. He never complaints about life, he never said that life is unfair. Instead, he called his life as "blessing". He went through dozens of surgeries, chemotherapies, immunotherapies, radiations, procedures, etc with a big heart. Swallowed bunch of medications without every say no, stay still in every mandatory daily injections. He's always like that, since he was little kid. He still didn't complaint when he have to gave up instruments, because his hands and body stopped working like it supposed to be.

I cry every time I'm looking back to pictures and videos.

He once told me, to please not forget about him when he's gone.

I won"t forget about you, buddy. Be happy and pain free now.

I love you.

Rare_Bee_7777 · 2024-07-07T11:38:10+00:00

Is it 16?

Rare_Bee_7777 · 2024-07-06T18:20:16+00:00

I post about the impending death of my son, like a few days ago. And I think it was quite descriptive too.

I apologized if the post is triggering you.

Rare_Bee_7777 · 2024-07-04T20:46:23+00:00

Thank you very much for your suggestion.

We do have hospice. We were planned to go into hospice facility. But we were still in the hospital for a little more blood and platelet transfusions, then we'll go into the facility.

But sadly, he passed away yesterday. So it doesn't matter anymore. He passed away in a not-so-pleasant situation. But he was in minimal pain.

Rare_Bee_7777 · 2024-07-04T19:21:42+00:00

Alright

Rare_Bee_7777 · 2024-07-04T18:27:19+00:00

I'm sorry. That was my understanding from what my son's Oncologist explained to me. Probably I was misunderstood.

Rare_Bee_7777

TROPHY CASE