My son got diagnosed having aplastic anemia. This is his story #5. (probably last post about this...)

in GEMS5 months ago

Introduction

Dear, Hive Community, how are you? I hope you guys are doing fine. Before I begin, I am sorry for doing mass tagging. I tag each of you guys because I wanted to thank you for liking/voting on my previous post, which gives me hive dollars that I already withdraw for my son's needs. Thank you, thank you so much!

It's been two months since my last post about my son's condition. I have been thinking about stopping writing about it since it's hard to put these pieces and stories together, but then I think again someone out there might get this story useful. So, I glad to share the difficult time of our side of the story. Our entire family has been struggling mentally and physically to endure the pain and sadness about my son's condition. It is not a dream that we can wake up from and forget about it. It's hard. I will try to make this short. God bless.

Getting to know about the wad

On 1st Mac of 2021, we checked in at the bone marrow transplant unit's wad. I am satisfied with all the utilities and facilities provided by the hospital for a bone marrow transplant patient for a government hospital. We only have three hospitals in the entire country that experience enough to handle bone marrow transplant procedures. Two of them (one private and one government hospital) are located thousand of kilometers away, and we need to go there by airplane. So, in our state, there is only one hospital that has experience handling the procedures. We are here.

By the way, we got really nice outside view from the room's windows. The view means a lot since we will be stuck here for three months according to the procedure plan.

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View from the window. Beautiful isn't it?

The First Step

After two days of well-rested, my son's first step of the procedure was the CVL placement. Thank God the procedure went smoothly and successfully.

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Few hours after CVL placement. The thing on (in) his chest.

The new way of cleaning teeth/mouth

For the first time, and still doing it until now. Ray cannot use a toothbrush, to prevent bleeding, to clean his teeth and mouth. He needs to use a mouth set that has been sterilized and sodium bicarbonate 3.5% to wash his mouth.

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Mouth wash set ready.

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Doing it slowly (really slow).

Other than that, nystatin also used as antifungal medication.

To fill the boredom

To stuck in this room is pain. After the chemotherapy started, Ray cannot go outside from his room. Even my movement is also limited. I cannot go anywhere except the pantry room and washroom which are located in different rooms. The reason is to prevent unseen tiny living microorganisms from reaching Ray and infecting him badly.

So, to fill the boredom, we try our best to entertain ourselves.

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Reading the Bible or other books.

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Me playing guitar, and we sing together.

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Yes, Chess!

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Chess with an insane handicap (I'm black and I lose haha)

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playing 'congkak'!

Other than that, we play Minecraft sometimes. Not forgot to mention, we also play snake and ladders. But, our activity is limited because we don't have a lot of toys here. Ray likes to draw, and I like to compose a song. Sometimes we just do our own thing.

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and of course, movie time!

Hardmode level up

It's really hard to tell this, but on the third day of chemotherapy, Ray's body begins to show a negative effect on the antibiotic that has been given to him. He doesn't have any allergic reactions for as long as I remember. The rashes that appear on his body making this treatment even harder and riskier.

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I only take some of the pictures. Some are worse.

The rashes appeared first on his chest and slowly spreading to the hands and leg's fingers which is the last part of the rashes spread. It took five-week for the rashes to completely heals.

The beginning of something even worse

After the rashes heal, the doctor decided to continue the procedure. But, before he even started, Ray got infected by some kind of microorganisms that make him got sinus, headache, fever, and more illness. The chemotherapy already kills his immune system which makes him vulnerable to infection. This is really hard to endure. The pain and struggling that Ray has been facing are beyond my will and strength. During Ray's mummy take a turn to take care of Ray in the wad, while I go out and get my leave without pay application approval, I had my time of crying for few hours (I just cannot control it, it just happens when I thinking about Ray). Because of that, My right eye got panda eye because of that, and it took five days to heals. It's hard. But I know I got to get stronger, and that's what I am now. God bless.

BMT cannot be done

It broke my heart to heard from the doctor and specialist that BMT cannot be done due to the infection. The infection not only makes Ray sick but also making the BMT riskier to do. Even if after the infection treated later, and Ray will look fine, the risks to continue BMT is so much higher now. The Doctor doesn't recommend it. So, we are looking at immunosuppressive therapy with anti thymocyte globulin (ATG) and cyclosporine to treat Ray in the future. Let's pray this will work and cure Ray's aplastic anemia.

Current situation

After got my leave without pay application approved, I swap the role with Ray's mummy to be the caretaker for Ray in the wad. It's not like Ray doesn't want his mummy to take care of him during he sick, but he wants me to be there more. He wants me to cook for him for every meal he takes in the wad. He's crying almost every day wants me to go back take care of him. I cannot say no to that. I don't care if I got no salary for a few months, although that makes me worry, as long he is happy then that's all matters now. A happy heart is the best medicine.

So, for now, I really hope the antibiotic that is given to Ray will work. I've been asking help from many people to pray for my son to recovery already, I mean a lot. And now I am asking from HIVE Community too, please pray for my son Ray Einstein Remenzer, so he will be cured and heals, live long, lives normally, grow up, have family and kids, I wish for a miracle to happen right now. The antibiotic that was given to Ray is the strongest one. If it's not successful to disinfect the infection, then no antibiotic left that can. May God have mercy. Amen.

Thank you so much for your time, and upvotes. God's blessing with us all.

Appreciation

THANK YOU ALL FOR VOTING MY PREVIOUS POST...

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I write down all upvoters before type it back in this post

Appreciation List 1

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THANK YOU SO MUCH!
Sort:  

I see my name!

Here is a vote. And post all the pictures and such you want. By all means tag me and I'll see about throwing you some votes. And throw up posts daily so we can help you out! Sharing and I'm going to follow you.

And awesome job living life for the person that really matters.

And have you tried looking into THC V. It's a amazing compound. And the newest hope for a antifungal and antiviral,and antibacterial. Safe enough for kids and we still need so much more research into it's benefits.

Well prayers from me and puppy dog.

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Thank you so much @ganjafarmer. I really love to post daily if I can. I will try my best to post daily. Thank you for the advice. I appreciate it.
By the way, what is THC V?
The doctor uses IV Apmho B 26mg 00, Voriconazole, and Nystatin as the antifungal.
I really love your puppy. What his/her name? make me miss my late dog who has a similar face to your best friend here.
Thank you for the prayers. It means so much.

Thcv is a chemical in the cannabis plant that shows huge promise to help people.

And we are really glad to support you.

And my dog's name is Wooda. And he is awesome.

We send our prayers for your strength and to help you through this time.

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Personally I don't mind being tag as @ganjafarmer said before, the truth is that your case is special and has captivated our hearts because we know how difficult this situation must be for your whole family, I can only ask in my prayers for you and the quick recovery of your little one, my best wishes for you always.

Thanks, @monster-one. You've been helping me to understand how this hive work from the beginning. I will not forget your help. Thank you so much. My best wishes to you too.

Yep too bad he can't do even a little post everyday so that we can throw some more votes on it and as well we can vote his comments too.

There's definitely ways for the community to support!

Maybe all of us can re share and try and get more upvotes.. tagging @acidyo, @howo and @ocdb.. Hopefully they can help out..

Thanks for the tag. Wish he'd post more often as well and hoping for the best.

Thanks man!!!

Community pulling together.

And sending blessings and prayers for healing.

Yes, hopefully after this he does :) Thank You :)

Thank you so much @acidyo. I will try my best. You are so kind. Thank you..

Most of the time, the routine in the wad makes me exhausted enough to make me feels no energy left to write a new post. Thank you @ganjafarmer. I will try my best.

I believe it!

But we all would.like to help.

So as you can.

And you don't have to post a long story every day.

Or you could do a short video.

But thank your for sharing.

blessings and much strength brother

Amen.. thanks @alexsilvera.. best wishes to you..

Didn't expect to see you write down everything on a paper. Hope the best for you and your family! You are a great dad! Please remember that 👊💛💛😃

Thank you for your kind words @d-zero. I try my best to be a great dad for my kids.

I just want to tell you my story and hopefully it will give you some hope. In 2012 I was diagnosed with severe aplastic anemia. I also was not able to get a bone marrow transplant, so I also was given ATG and cyclosporine. By 2014 I was recovering so well that they weaned me off of the cyclosporine, and today I have been completely off any kind of medication for 5+ years. God is good, and hopefully your son will recover in a similar fashion and get to live a normal life. Praying for you and your family.

Wah! What a blessing life you got there! Your story will inspire Ray! Thank you so much @acousticsteveo for sharing your miraculous story with us. I appreciate it very much! Thank you! Best wishes to you!

Good luck to your family! Sent a little tip.

thank you so much @hivelist It mean a lot. Thanks.

Hola @remenzer, con el favor de Dios tu hijo sanará prontamente, haz vibrar todo tu amor y eleva tu oración a diario ...somos escuchados en el momento indicado... Jamás pierdas las esperanzas...

No me importa haber sido etiquetada de forma masiva si esto va ayudar a un niño a sanar, espero los recursos económicos lleguen a ustedes como agua fluida, porque sé muy bien lo difícil que es lidiar con una persona enferma y ademas estar angustiado por el dinero. Hive es una gran familia, y segura estoy te sabremos apoyar..

Les envío todo mi amor y sobretodo toda la buena vibra posible para que salgan prontamente de este amargo trago.

Saludos, bendiciones, fe y esperanzas


Hello @remenzer, with God's favor your son will heal soon, vibrate all your love and raise your prayer daily ...we are heard at the right time .... Never give up hope....

I don't mind having been labeled in a massive way if this will help a child to heal, I hope the economic resources reach you like water, because I know very well how difficult it is to deal with a sick person and also to be anxious about money. Hive is a big family, and I am sure that we will know how to support you.

I send you all my love and above all all all the good vibes possible to get you out of this bitter pill as soon as possible.

Greetings, blessings, faith and hope.

Translated with www.DeepL.com/Translator (free version)

Hello @keco, thank you so much for the concern and love. I wish you all the best.

Hmmmmm, I really appreciate the mention. 🤗
I Pray God grants you your greatest heart desire in Jesus name Amen!!!

in Jesus name Amen!!

My voting power is like nill, but I can pray for Ray, please take care of him

Yes, I will.. Thank you so much @skepticshakeel.

@tipu curate

Thank you!

Thank you so much @ninahaskin, although I don't understand much what it's mean by tipu curate. Thanks!

With everything on your plate you still managed to hand write everyone's name. You son's luck to have you.

thank you for your kind words @dandays. Thank you..

I wish you all the best. Hopefully your son will recover quickly

For all germans:

tragt euch bei der DKMS als Spender ein. Das ist danz einfach. Einfach online anmelden. Dann erhaltet ihr einen Brief mit einem Stäbchen. Das kur in den Mund stecken und zurückschicken.

https://www.dkms.de/

Es kann leben retten!

Best wishes to you. Thank you @hatoto

Anything I can do to help, especially if it is as simple as voting your post!
!PIZZA

Connect

Trade


@remenzer! I sent you a slice of $PIZZA on behalf of @nobutsd1974.

Learn more about $PIZZA Token at hive.pizza

thank you @pizzabot, I love pizza. Can't wait the day me and Ray together eat pizza again.

thank you for the vote @nobutsd1974, it helps. My best wishes to you.

I remember you @aaalviarez.. you 114 before. thank you so much for the votes! God bless you!

Yay! 🤗
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How I wish I could help financially. I'll pray that your child can be healed. ^^

The entire Community together can do amazing things! Thank you for offering up prayers!

Your pray is powerful and helping. Thank you so much @imawreader

Thank you for appreciating. It's the least I could do.

Man I'm sorry I hope your boy can improve you have my prayers

It's only here that prayers and votes can actually make a difference thank you very much!

No problem nothing is more important in this world than your love ones

Absolutely I can completely agree with that

nothing but facts man Going to follow you, like to check out my community? https://peakd.com/c/hive-123620/created

Amen. Thank you @polarmystro..

Healing prayers for your son, Ray Einstein Remenzer. 🙏 And thoughts and prayers to you and your whole family too as you battle this illness together. God bless.

Amen.. thank you @arrliinn. @ God bless..

get my 100% upvote , maybe it is a small upvote but i hope it helps...wish you the best for your son and i'm sure the community is here to help you, count on every one of us

Thank you @funnel. It means so much to us.

I wish you all the best! A happy heart is the most important, keep smiling for your child it helps!
I wish you all the strength to get through this difficult times!
!invest_vote

Yes! Thank you so much @solymi

@solymi denkt du hast ein Vote durch @investinthefutur verdient!
@solymi thinks you have earned a vote of @investinthefutur !

hi, thanks

Lord, please heal Ray. Fill them with the peace and joy I know can only come from You during this hard time. Walk closely beside them during their journey to healing and recovery that I know is possible through Your power alone. In Jesus' Name, Amen.

in Jesus's name, Amen. Thank you for the pray @tawadak24.

Wow, I never imagined I would see myself on that list! I believe in God and I pray to Him to heal your son, I hope everything goes well, cheers🙏🙏🙏🙏🙏

Amen. Thank you @iamsaray . Cheers..

Greetings my best wishes for your son he recovers soon, God bless him and cover him with great health.

These are dark times to be unhealthy but I do hope your son will pull through as soon as possible.


You’ve Been Upvoted By The Hive-113748 Orchid Lovers Community!

The Orchid Lovers Community

A place for people who Love Orchids!

Thank you @hive-113748. All the best your community

Thank you and praying and sending well wishes your way ☺️ Giver your son a hug for me 🥰

Prayers, well wishes, healing energies...all are headed your way. Keep being the BEST dad you can be!

Thank you so much @tamaralovelace . I will try my best.

Here's my 100% upvote for your son, it is not much but I will include him in my prayers

Thank you @dinglehopper. Your vote means to us.

I wish your son a lot of health, may God bless you in these difficult moments!

Amen... Thank you @creativemary

Man... I am praying for you and your kid. God bless.
!LUV 1
!PIZZA

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

Learn more about $PIZZA Token at hive.pizza

Amen. Thank you @amphlux

I send you and your family all my prayers and blessings. May the Lord keep you safe in these continuously trying times.

I'm glad to know that our upvotes are helping you and your family out financially.

Yes it does! Thank you so much @gradeon

Your amazing father and hope the very best. Thank you for tagging me.

Thank you for your kind word @adysscheryl. Thank you..

Ray is healed in Jesus name, amen.
Have faith in God and he won't let you down, there's nothing too big or too small for him, what he cannot do does not exist

in Jesus name, Amen ! Thank you @timmypat

Hi @remenzer, you were just shared some LUV thanks to @amphlux. Holding 10 LUV in your wallet enables you to give up to 3 LUV per day, for free. See the LUV in your wallet at https://hive-engine.com or learn about LUV at https://peakd.com/@luvshares

oh? did I? I am glad! thank you @luvshares

Allah give healing. I wish you to see the days when your son regained his health as soon as possible.

Amin. Thank you for the upvote and the hive transferred @papowich . Thank you thank you so much

I hope your son gets better soon... 🙏

Amen! Thank you @bliss11

I wish him ALL the BEST, @remenzer.

God bless you!

Thank you for the wish @wiseagent

I have not voting power enough to help, but I do pray and I believe in God. God will do the miracle if you have faith enough to trust him...You need to have faith. You need to feel that God loves you, and He has been with you all the way

Mis oraciones se elevarán al cielo por Ray y tu familia. Dios es bueno!! Eres un gran padre tenlo presente.

Thank you so much @argeh

Never seen a person like you. Such dedication and courage to face this situation hand in hand and managing all these posts and mentions. We are with you in this and we all are supporting your son.

Thank you so much for your kind words @cryptovial.

Esta comunidad es increíble, me alegra ver que todos ayudan y ponen su grano de arena. Muy linda y a la vez triste historia.. le mando las mejores vibras a tu hijo, las mayores bendiciones, y que DIOS lo cuide y proteja de todo mal.

Amen! Thank you, kind people, thank you so much @mairimmorales

Reading your post got into my bone. I'd seen a lot of patients who are good fighter. I hope and pray that your son will get all through this. He is so lucky to have you at his side at that very challenging moment. Sending hugs for him.❤️

Thank you @noreen. Ray always strong.

Ánimo, que la esperanza no se pierda, te mando buenas vibras, puede ser difícil pero es lo que nos hace seguir de pie. ÉXITO!
Cheer up, hope is not lost, I send you good vibes, it may be difficult but that's what keeps us standing. SUCCESS!

Thank you @valthy. Best wishes to you.

I have not voting power enough to help, but I do pray and I believe in God. God will do the miracle if you have faith enough to trust him...You need to have faith. You need to feel that God loves you, and He has been with you all the way

Thank you for the couraging words @isgledysduarte. I will remember your advice. Thank. God bless..

God bless You and your family.

you are such a great father!!!

and you are great person! thank you so much for your kind words @psychkrhoz

Praying for your son's recovery, sir. Please tell Ray to stay strong and that we are waiting to see him finally recover. ❤️

AMEN! Thank you so much @straykat

@remenzer I think chemo and antibiotic will worsen it. I share with you this solution, please study this and order it. https://jimhumble.co/ https://mmstestimonials.co/

Thank you for your concern @zdigital222, you are good people.

Thanks for shared with us. We are with both of you

Keep going forward with firm faith in God and keep putting that same encouragement into practice in favor of your treasure who is your child. The Lord knows what you are in need of and this ordeal will be rewarded. Just keep trusting in God. Continue to read His Word, hear His voice through reading the Bible. There you will find comfort for your soul in the midst of the unexplainable pain we experience in this life. But there is a Plan that is not yet finished and the reward is assured with the Victory of Christ on the cross. Stay strong and I will contribute my prayers for Ray, for you @remenzer and for the whole family.

Sending you a big virtual hug in the name of the Lord ♥

And a tender kiss for Ray.

👄

🙏

I will! Thank you so much for the advice! I will keep that in mind @parauri.. thank you!

terima kasih bro.. semoga sihat berpanjangan @davidmuhammad

God bless Ray!
He is as brave as you are. Prayers will unite and be a great strength. In the prayer of Faith there is power. Every time you post tag me. I will be supporting.

Amen! Faith is powerful, thank you for you kind words @sorprendente

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get well soon

Hello Ray I hope you feel well soon I have a little surprise for you but with much affection I give you as a gift. I wish you well and health. Have a good time in the company of your dad @remenzer and rest assured Ray that God is with you.

Hi. Sorry I saw this post today. I am not very active on Hive anymore because of other commitments so I missed this post. I hope your son is recovering.

It's okay. I hope you are doing great. Thank you for the reply. :)

Gracias por la mension amigo como madre me pongo en tu lugar y se que no seria facil estar en tu lugar. Pero la fe debe ser grande porq el sanara y todo sera solo una terrible pesadilla

Thank you @angeli-b, I will remember your words. Thank you so much.