My son got diagnose having aplastic anemia, this is his story.

in Ecency3 years ago

Hello, I am Remenzer. I come from Sabah. I hope I can tell what we've been through before, now, and next.

I am sorry if you saw a lot of English grammar mistake. I am Dusun people, and I am rarely using English in communication.

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This is me, Remenzer

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This is Ray Einstein with grandpa, my father.

I miss Ray's healthy condition just like in the picture.

On 30/10/2020, Ray's mouth looks pale, and what makes it weirder was his leg and hand got few bruises that already two weeks and doesn't heal much. So, we went to the nearest clinic in the next village to do a blood test. It shocks me, his red blood count was 7.0. So we rushed to the hospital in town. The RBC dropped to 6.8. The doctor said we need to go to the hospital in the capital.

After getting our covid swab test result (negative), we were sent by the ambulance to the hospital in the capital.

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Inside the ambulance

We reached the hospital at midnight. We were put in a filter room. All patient that come from all over the places in the state must be put in the filter room before moved to the normal wad. We must have 3 negative covid swab test result before moving to normal wad.

We spent 10 days in there, if I am not mistaken, and we've been through 6 swabs test. I had to say, it was the most terrifying days of my life. I can walk alone into the jungle at night without fear but this I am so scare. Why I say so, two of the patient there detected positive covid, and one of it, sorry to say this, die because of short breath. I am so scare that the virus might got us because we're in the same room. Thank goodness, after the 6th test result out, we get negative results and moved to the normal wad room.

One day after we moved to the better ward, my son had to go through cerebrospinal fluid drawn procedure.

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This is before entering surgical boards.

I have never cried before in my entire adult life, but this made me crying. He is so brave.

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After CFD, waiting for him to wake up.

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This is where the CFD.

After the CFD result out, my son diagnosed having aplastic anemia. It crush my heart. I felt numb and weak. The doctor said, bone marrow transplant is the only better way to cure him.

I felt under so much depression. I felt strengthless. We google about AA and read about it together. I am scare. Ray is scare. We all scare. Not to mention the cost of BMT. Ray give me suggestion and wish me to have a youtube channel, because he know how good it turn if it success. I don't know what to do with that channel. I am so bad at it. But Ray happy about it, and fell secure. I granted his wish about the channel under my name, at least he see me doing something and happy about it.

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For the BMT, both of his younger brother already do a HLA typing. The result already out on 14/01/2021. His youngest brother, 5 years old, Rez Einzer has the highest % match. We happy and sad at the same time. We are waiting for the next appointment in the capital hospital on 25/01/2021.

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This is Rez

While waiting for the next appointment, on 25/01/2021, Ray need irradiated blood and platalet transfusion every week.

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Irradiated red blood transfusion

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This is one of the weekly full blood test result

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This is Ray's diary, the doctor do the writing of his current status here.

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It break my heart everytime I see this. Ray insist to study in his current condition. Ray is studying in the hospital wad.

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I cut my hair bald. I felt like I had to. I make a promise to myself, I will never grow this hair longer, not until Ray has fully cured. Btw, this is my daughter, Rein Eiona.

Help me, Pray for my son, Ray.

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I hope your son completely recovers and appear like how he appeared on your picture before he was diagnosed, so your family can have a normal and happy life (and you would not have to worry about breaking your promise to yourself not to let your hair grow longer). 🤗

Have a !PIZZA with !LUV! 😁

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@remenzer! I sent you a slice of $PIZZA on behalf of @savvyplayer.

Learn more about $PIZZA Token at hive.pizza (1/10)

WAH! You are the first person and the only one who notice that! I hope some of the comment will talk about my hair, but there was not.. no one until now! thank you for following this much!

My wife doesn't like me bald. Weirdly, her stress level even rises to a certain high seeing me bald. Sadly, her depression even multiplied in our current condition. Her happiness & courage are my priority too. I am okay breaking that promise for them.

You don't need to promise anything to anyone, except to do your best for your family. 🤗

Have a !PIZZA with !LUV! ❤️🍕😁

Connect

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@remenzer! I sent you a slice of $PIZZA on behalf of @savvyplayer.

Learn more about $PIZZA Token at hive.pizza (3/10)

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What a difficult situation you go through with your son, he is very brave and strong, I hope everything goes well.

thank you so much

Es una situación difícil espero pronto se solucione y el niño pueda contarlo como una experiencias más en su vida.

That’s an awful thing to have to go through for anyone, never mind a child. I’m sorry to hear that it’s going on and I hope that he gets the treatment he needs! It’s not much but if you catalog his story like this on hive people here may be kind enough to bring the posts up to some decent money to help give you some needed assistance!

thank you so much

I was very impressed by your story, it is very difficult for a child to go through all this, I hope he gets better soon

thank you so much

I have reblogged your post to help you.

thank you so much

With this same hive account you can create content for @threespeak without having to wait to be monetized, I'm sure that people like @eddiespino could help you get in touch with good-hearted people.

thank you

but I am not really sure how to to it. I am so new in hive.

Being a father of a 1 and a half year old boy, I can't even image the pain and sufferings you are going through. And, I can't image me either in your shoe. May Gold show his mercy on Ray and on your family.

However, it seems a little error in your posts.

his red blood count was 7.0. So we rushed to the hospital in town. The RBC dropped to 6.8.

I think those were hemoglobin (Hb), not RBC. Both are not same.

What I know is that AA is diagnosed by doing a Bone marrow study, not CSF study. Was that a CSF collection procedure or bone marrow collection procedure?

I am not really sure what is the correct term to use. Sorry, what you said are the correct one. I am not really familiar with those term. I thought what I use are the correct one after reading through the internet of what my son has been through.

No, issue, friend! What was the actual message from your post, I think the readers got it. The medical term can be confusing to a non-medical person.

Stay positive and put your best effort to save Ray. May Almighty help you!

thank you so much for your concern.

May the Almighty bless you and your family.

thank you so much

Lots of love and prayers to you and your family. This is a difficult situation. However, you need to stay strong. I think the idea of youtube isn't bad at all. Add hive to the mix and hopefully you will find some financial help.
At his age the best solution is BMT, it is really suitable since he has siblings that may fill the criteria. The prognosis is really good (above 90%) with proper treatment. He will have to be on transfusions. Hopefully he will be stable and lead a fruitful and happy life.
I am reposting this and sending a humble 5 hive as a tip. Please accept it as a token of my prayers.

thank you very much friend. God bless you and your family.

Hope everything will turn out to be better. I can't do much here with my small vote. But I've voted and reblogged your post for more exposure :)

thank you so much

I wish you health on this way and hope you survive it well 🙈😊

thank you

you welcome!

Hello Remenezer,

We cannot accept your verification that you submitted yet.

To verify, could you please mention the word "Hive" in your YouTube channel:

https://www.youtube.com/c/Remenzer/about

You can remove this mention, once we confirm the authorship.

Thank you

Hello, @hivewatchers, I actually don't know what I've done. I still confused and not fully understand how this authorship work. What I do was a trial and error to see how things work. Sorry if I make mistake.

Hi,
You just need to mention Hive in your YouTube channel.
https://www.youtube.com/c/Remenzer/about