GvHD, And The Reality of It

I’m so lost, I don’t even know what I wrote about last so forgive me for any repeats in advance.

In exchange, I will try to punctuate.

A slew of tests day before yesterday knocked our boy on his ass. He usually comes out of sedation like The Four Horseman from the Apocalypse wrapped up in a 50 lb pound bald boy, but he was only mildly grumpy and slept all day and all the next night except for the usual (TMI) hyper pooping/hyper bloody painful¬†urination and go-ahead-and-throw-in-some-random-new-kind-of-belly pain in there so we had more scans at 3am.¬† He threw up and his NG TUBE came out his nose and he said, “Oh My GoD! What are we gonna do now?” poor baby. Everyone was baffled. I wasn’t. I called it weeks ago.

There was no freaking way we were going to be THE ones to escape GRAFT VERSUS HOST DISEASE. Not when he has so many problems. To top it off, they never see GvHD this EARLY. Usually 100 days out. We are 32 days from transplant and he was having symptoms which they were blaming on engraftment 2 weeks ago. They say GvHD is 50/50. Some say it’s 60/80. They also said they would tell me if they could not cure him. Well, fucking -A. It looks like I am watching my son die. He has this horrible rash from the rejection of cells all over his body. Distended stomach. No nutrition as his liver can’t tolerate it. Only fluids.

I felt more positive the day he was diagnosed.

I have mediation chain going. feel free to involve yourself. Just sit quietly for a few minutes and think about his health, his liver recovering, his cells assimilating, his rash to go away, his pain to go away, his smile to come back.

His GvHd is stage 3. The highest stage is 4

3 Comments

  1. Donna Colyer Martin

    I can’t imagine what you are going through as a Mother. I am only his Aunt and I think about him and talk to God about him all day long and he is my last thought and prayer at night and my first thought and prayer in the morning. I love him very much and I feel such a bond with him like I did with his Dad. He is such an amazing little boy. He is going through so much and we keep questioning how much more his little body can handle. We are told he is in one of the top Hospital for fighting Leukemia and we trust they know what they are doing and are doing everything they can, but I am trusting God will keep his arms wrapped around Ashton and continue to give the doctors wisdom on how to fight all the horrible things happening to Ashton and restore him to good help. My prayer and hope is for Ashton to come through this long hard journey and be restored to good health and WE will not lose faith and hope but continue to trust God and medicine. I love you, Ashton, your Mom and my Sister very much and think of you all constantly and pray God will continue to give you all strength, hope and peace.

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