Please hug your kids tonight

[Alleycat72]

She's had a liver biopsy, a CT, an MRI, a spinal tap. Negative for leukemia. We are home without any medication. Monday we start steroids. It'll be 2 weeks before the test for HLH comes back. Her liver is failing. She can't survive chemotherapy. She's not a candidate for a liver transplant. Chemo and stem cell is the only treatmlent for HLH. That would give her a 30% chance. I don't know what to tell my boys or my oldest daughter. 

They said she'd never walk, talk, eat. We made that happen. I spent 8 months teaching her to walk. 1 year on eating solid food. She was never supposed to make it past 7 or 8. She's 12. Her biological mom was keeping her locked in a closet. I make problems go away for a living. I can't fix this. 

I'm angry. I want to break ####. I want to start a fight with someone. I really don't care if I win or lose. Everyone tells me they understand. They don't have a ####ing clue.

We are just hoping for a diagnosis that is more forgiving.  

I'm not a good person, but my Wife is an angel. I hope she makes it through this. 

[Luckyforward]

There are no words.  Know that someone you don't even know carries you in prayer and hope.  

[RED333]

Alleycat, please remember God loves yall, praying for good things.

[gregintenn]

Friend, all I can offer are prayers. You said folks tell you they understand. I can tell you I don’t have a clue what you’re going through, but I’m certain it’s an unimaginable pain.

[TripleGGG]

I can't begin to imagine the grief, fear, anger,and pain you and your family are dealing with. 

[Snaveba]

I know this is no consolation, but imagine if you never came into her life. I assume from your comment about her biological mother, that you and you family took her in and gave her a loving home. I hope and pray that a remedy for her ailments can be found and it works. You and your family have already made a huge difference for her life. 

[peejman]

I don't pretend to know your pain, but I totally get the anger.  I'm the same way. Your wife needs you more than anything right now.  The only way to get through it is together.  May God have mercy on your family. 

[gregintenn]

Dads are supposed to fix things. It sucks when you know you can’t.

[hipower]

18 hours ago, Alleycat72 said:

She's had a liver biopsy, a CT, an MRI, a spinal tap. Negative for leukemia. We are home without any medication. Monday we start steroids. It'll be 2 weeks before the test for HLH comes back. Her liver is failing. She can't survive chemotherapy. She's not a candidate for a liver transplant. Chemo and stem cell is the only treatmlent for HLH. That would give her a 30% chance. I don't know what to tell my boys or my oldest daughter. 

They said she'd never walk, talk, eat. We made that happen. I spent 8 months teaching her to walk. 1 year on eating solid food. She was never supposed to make it past 7 or 8. She's 12. Her biological mom was keeping her locked in a closet. I make problems go away for a living. I can't fix this. 

I'm angry. I want to break ####. I want to start a fight with someone. I really don't care if I win or lose. Everyone tells me they understand. They don't have a ####ing clue.

We are just hoping for a diagnosis that is more forgiving.  

I'm not a good person, but my Wife is an angel. I hope she makes it through this. 

I have no magical healing words for this. I can only add more prayers for you all. And I will continue to do just that.

[res308]

I’ll continue praying for you and her. Throughout my life I have earned the scars and a full, deep understanding of pain, anger, grief, fear. I know that I’m not the only one here. And even with all that, I cannot pretend to know and feel the depth of what you are going through. But I do understand that it is deep abiding pain. I can empathize with that part. 
Someone has already said it, but just know that you have people praying for you and your family. Nobody here can know just the right thing to say, and I’m scared to death that if I tried to say what I thought was the right thing at a time like this, the words would just seem hypocritical and empty. All I can do is pray for you, and that I will do. 

[Alleycat72]

First good day shes had since this started. We are doing blood work every other day. Her enzymes are down to 130-140 times normal. Liver inflammation numbers up slightly. HLH came back negative. They have absolutely no idea whats causing it. They are not treating it for fear of making it worse. All the tests have contradictory information. She had the same type of issue a few years ago, but her immune system attacked her blood instead of her liver. The only thing they did was several blood transfusions until it stopped. My Wife looks better today. She feels like she can breathe again. 

[BJB]

Dang Hate to hear that. 
praying for y’all 

 

I don’t think you could be in a better place given the situation 

[Snaveba]

I know you are still on a long unknown path, but I am thankful it was not HLH. Still praying for your family and her recovery. 

[gregintenn]

1 hour ago, Alleycat72 said:

First good day shes had since this started. We are doing blood work every other day. Her enzymes are down to 130-140 times normal. Liver inflammation numbers up slightly. HLH came back negative. They have absolutely no idea whats causing it. They are not treating it for fear of making it worse. All the tests have contradictory information. She had the same type of issue a few years ago, but her immune system attacked her blood instead of her liver. The only thing they did was several blood transfusions until it stopped. My Wife looks better today. She feels like she can breathe again. 

Sir, my prayers are still with you.

[peejman]

Still praying for you guys and for the doctors to figure it out. 

[RED333]

Lord thank you for another day, please look after this family and hold the hand of the doctors so to bring good things to this family, Thank you Lord for another day.

Edited May 21, 2023 by RED333
Praying

[Alleycat72]

Her enzymes are below 1700 now. They were 3400ish. They should be 10-20, but they are much better. Liver inflammation has started to decline. Her kidneys are out of the danger zone and approaching normal. She started taking phosphorus supplements today, but other than that she's just getting her regular medications. Whatever made her immune system attacked her liver has apparently stopped and everything is trending back to normal. I'm not a religious person, though my Wife is...I really appreciate everyone's prayers. It means a lot. She was not expected to survive and we were told as much. My Wife is doing much better and feels like she can breathe however I'm probably going to be sleeping alone for at least a week. I get a bit unusual when I sleep after she has issues. It's always after though. Drinking always helped, but I have all but stopped that. 

Thank you everyone. 

 

[TripleGGG]

That's so good to hear. Prayers continuing your way. I'm a firm believer prayer can and does change things. 

[RED333]

This is good news, we know yall needed it. Thanks Much for the update, still praying.

[TGO David]

13 hours ago, Alleycat72 said:

I'm not a religious person, though my Wife is...I really appreciate everyone's prayers. It means a lot.

Jesus wasn't a fan of religion either.  Religion gets in the way of an actual relationship with him.

Just something to think about.  

 

Really glad to hear that things are improving!

[Luckyforward]

Hang on to your faith and your family.  God will bless your tenacity.

Celebrating this moment in which you may have a greater sense of peace.

[Alleycat72]

As far as anyone can tell, it's Macrophage activation syndrome. There is one glaring detail that doesn't follow MAS. It stopped. It shouldn't have. This is what happened when her blood was attacked a few years back. It also just stopped. She will not be officially diagnosed, but it has 99.9% of all the other hallmarks. 

We took her and my two youngest boys for a walk at Yanali park this morning. I pushed her in a stroller that's big enough for a small 12 year old. It's been a good day.

[RED333]

34 minutes ago, Alleycat72 said:

It's been a good day.

Praying there will be many, many ,many more!

[Kimber451911]

Having just read this, hits close to home for me in many ways. Prayers for your family! 

[Alleycat72]

We had a bit of a back slide, but her numbers today are much better. Most of it is still high, but still trending down. The only thing she's been giving that's different is a pretty good dose of phosphorus every day. Her phosphorus is almost back to normal. The number below are 1/3 of what they were.