Relapse

In the middle of recovery when things were finally looking better, the Hulk kept showing up. Not calm Brooding Hulk. The kind of Hulk that would pick up Loki and swing him around real Quick. The doctor's always cry disease, but in my heart I didn't want to believe it. I gave in and did everything they said and still he is doing bad?!?! I gave him the harshest chemo for this shit-and STILL the disease makes gains on him??? 

I stayed int the hospital with him to get a lumbar puncture, IVIG and once given truth to the whispers of relapse: Retuxamab.

Jason's B cells are up. He has 12. For a total of 1% B cells. He got retuxamab.

It's like...

I wish...

Perhaps the words are caught in between my fingers and my throat...

When the doctor first said it. I needed a moment to let it register. Mechanically I consented to do whatever needed to be done to counter a relapse but emotionally I am just caught. Deer in headlights. Hypnotized by bad news on top

Of bad news.  At least if he tagged 100% before this happened I would have a little more sunshine reserved for this rainy day. But he didn't get up to it yet. We didn't burn the last bout of the disease entirely out of him Before this happened.

How much longer? 

Bitching and Moaning

When someone bitches about having a rough night's sleep in their bed. Please show them the below picture. This is where I slept last night. 

No More Tears

I don't cry anymore. My body hurts, there are aches and pains and it's ugly. So American Horror Story horrifically ugly. But that emotion to bring the tears doesn't shine thru anymore. 

I was home last night, trying to relax because the crazy with Jason has been about all weekend. But I felt it. Bruce Banner was there all day. I just felt the Hulk would come, when I got the call that he was being difficult I knew I had to stay the night. 

2AM the Hulk wanted to go catch the Megabus. I had to subdue him and the scuffle that ensued broke a very expensive bra and injured my little pinky. I always get asked if I am ok. You just watch me dodge a fist fight and hold down the exorcist and I guess asking if I am hungry or want a cup of coffee is not appropriate. The appropriate question is , "are you ok?" and I'm used to calmly and mechanically answering "yes". I don't cry, my heart doesn't race like before. The adrenaline is there in the scuffle and gone when it's over. The animal I fought with wasn't my son. The animal that tried to kick and punch and bite is not the boy I raised. It's the encephalitis riddled zombie he has become. He's essentially a real life version of the "Walking Dead's Penny". But she only comes into him in spurts and in real life I have the certainty of him being better. 

But I most certainly am The Governor. Choosing to be his only handler because he is mine and no one else would

Understand. 

The fit left almost as fast as it came. A PRN later he was getting his regular meds. His nurse afraid of him. He never touched her and she wasn't involved in the scuffle but seeing was enough. She was scared to give the meds and I helped her. Then the Hulk decided to show again. 

After 20 more minutes and his aide's help it was over, he got injected with another PRN anyway and he chilled out.

Obviously I got no sleep. I came home dressed the babies dropped them off at daycare and headed into work. Ready to field all the OMG questions my face will merit. I am tired. Like my soul is tired. Thankfully the questions didn't come. Not sure if it's an astute means of letting me get thru work without a field of questions or a general population of people who don't really care or want to hear about it. Regardless the reason, I am grateful. Grateful no one makes me live the story over and over. 

We had a bad day. Now we have to shrug it off and see what we can do to make better preparation for the days to come.

Maybe that's why I don't cry anymore. I know this is only temporary...

A Mother's Love

A living death is the way to describe it. To watch your child day in and day out in the condition. Never knowing when or how it will end. There are all these stories and all this promise, and nothing. Nothing that you recognize as peace ever really come to fruition. So you pray and you hope and you cry. Until one day you can't cry anymore. You accept the broken, and concede to be beaten. And you take your lickings as they come because that is the only certain thing, and you are used to it.

Jason needs a lumbar puncture. My job needs someone there. My kids need a mom. My husband needs a wife. 

No matter how well I pay or how much I beg for help, the people who I expect to help me won't and the courtesy of strangers carries me through more often then not. 

This disease has made my life a fucking mess. It won't succeed until I am fucking homeless.

It Never Fails

After I post something good, the ugly comes. Almost like the cosmos thinks we are having too much fun. Jason was maniacal last night. I had to drive like a bat out of hell to subdue him. I'm tired. I want this over already.

A Picture Worth A Thousand Words

Aesthetically he is close to 90%. We still have work today... But through God's Grace and Mercy this is how far we have come.

Progress

Yes, that is Jason and his friend, playing XBox