Cytokine Madness

Okay class, listen up. Today has been a crap day. That’s right, I said crap day.

Honestly, it’s been worse than crap, but this is a family show, so I’ll leave it at CRAP.

I try very hard not to be all gloom and doom when it comes to Capt Snuggles and his various ailments. Various, mind you, as if one just wasn’t enough. But some days the doom and gloom take over and it’s all I can do not to scream.

So if you’re arriving late to the show, I’ll give you a brief run-down. The Captain had a liver transplant back in mid-August. Directly after the transplant he caught a virus called Adeno and then he developed Graph vs Host Disease. We’ve been in the PICU for 3+ months fighting both of these bad boys.

Last week he was out of bed, laughing at his Occupational Therapist.

Today, not so much. Today he was feeling yucky. Today his rash spread. Right before our eyes, like wildfire. The GVHD went from being only on his hands and feet to, well, everywhere.  Scalp, forehead, mouth (yes,even inside his mouth), belly, back, arms, legs, even the poor lad’s bum. EVERYWHERE.

So a decision was made.

A decision they tried to postpone. A decision that is irrevocable.

A decision that has me up and awake in his room at  2am because it’s already put his little body through hell.

It’s name is Campath. And it wreaks havoc on the immune system.

Campath specifically targets lymphocytes, which are a type of white blood cell. It does not differentiate between the good (his) lymphocytes and the bad (his donor’s).  It is an equal opportunity killer.

Up until now they have been giving him meds that kill specific types of lymphocytes. T-cells, B-cells, activated T-cells, cells that control the activation of T-cells, B-cells that dance with the T-cells under the pale moonlight and on and on and on.  Yes, the lymphocytes can be divided into more cell types than you can shake a stick at. Suffice to say these previous meds have not been successful in containing the GVHD.

So bring on the big guns.  Think Hiroshima. It’s not a pretty picture.

The Campath was administered  @ 6pm. By 6:30pm he had spiked a fever to 103.5, his heart rate was 212 and he was doing that grunty-breathing thing that earns him the high-flow nasal cannula.

He was experiencing  hypercytokinemia. Or a cytokine storm. That’s a fun term. Cytokines are crazy. Imagine a mosh pit filled with teenage boys. Bumping, thumping, slapping into each other. It’s not funny until someone gets hurt kind of thing. Now imagine the cells in your body doing all that frenzied moshing. That’s a cytokine storm.

And that’s not good.

So we do what we do best. We wait.




It’ll take a couple of days to see the effects of the Campath. He may need more doses. When I watch him in his hospital crib, the term that comes to mind is languishing. Some days are better than others, some are worse. Most are stagnant.

Today would be classified as worse. The GVHD has progressed to the point of beefy blisters on his hands and feet. That just earned him an additional drug. No waiting to see if the Campath will do it’s stuff.

Add. Another. Drug. Now.

I was asked the question whether I regret opting for the liver transplant. Rather, ‘pushing’ was the term used. Did I regret pushing for a liver transplant? Obviously this person had no idea of the devastating effects of Citrullinemia. The dance of brain damage that is the life of a child dealing with that awful disorder.

I answered simply. “No.”  I think the person was rather appalled at my answer, seeing only what the lad is experiencing right now. This person did not understand that the same Adeno virus that triggered the GVHD after the transplant would have caused irreparable brain damage before, in the guise of elevated ammonia levels.

I know he’s in pain, he may have scars. I know he feels yucky, but it will pass. I know he’s weak, but he’ll get stronger.

Is that Faith? I am not a subscriber to the notion of a greater power governing my life. So maybe it’s my own brand of Faith. Faith in the power of one’s own body to heal. Faith in modern medicine. Faith that I made the right decision for my son, that I did the best I could to afford him a life.

Even if he looks like Thing from the Fantastic Four.


It's clobberin' time...



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5 thoughts on “Cytokine Madness

  1. mooney=mc2

    Oh my, how you even stay so composed (or “sound” it in your post) is beyond me. You definitely have a strength that no one could quantify.

    I subscribe to a Creator and will be pleading for Captain Snuggles, you and the entire team of doctors as soon as I can find a quiet moment.

    Thank you so much for keeping us updated on how thigns are going.

    Thinking of you in Maryland

  2. Oh your poor baby, it must be so hard to watch him go through all of this. Either way, it sounds like your kind of faith is the best thing you can have right now. I happen to follow my own kind these days too so I will use what I have to send you a million good thoughts and hope the rough days pass quickly and you get to take your baby home soon.

  3. Really?? Why would someone question what already has been decided on. Obviously, ppl don’t understand what goes through a parents mind when faced with only a few options. I have children with special needs (brain type issues, plus more) and the mind is a terrible thing to let go to waste, it is soo true. I am blessed to have children and I wouldn’t want my children to go through anything, but if I had a choice I would have chosen anything other than mental health, neurological impairments, educational type deficiets. The kids who have “health” related issues get more care, more attention, more of everything. When there is a brain impairment it is a long process for little to no change and it is very discouraging. I am a Christian and I am big in belief – There is a God – I can’t give answers as to why He chose you to have 3 children needing transplants – All I can encourage you is that it is part of the bigger plan He has for you and all of your children. I can see why God has put faith in you to have these kids – because you are eager to listen, learn and use the information to make big decisions, but more importantly is to tell the world (blogosphere) what everything is and does. You write in plain english and most importantly it is with care and kindness that snakes out of your computer. I don’t know you, but I understand more of how my body works – and well, how Captain Snuggles has a big fight ahead of him. We wish you well – I am having surgery tomorrow, but if I am on here on Thanksgiving – I hope to reach out to you again. Have a Happy Thanksgiving – we wish you and your family many blessings. I will be praying. Diane

  4. james hillis

    Hello I am the father of Captain Snuggles and I thought I should start putting my 2 cents worth in. My wife is one of a kind, every man in the world should be has lucky as I am. She spends countless hours sitting with David, no sleep just watching over him to make sure nothing goes wrong. This boy is strong he will be fine, in time, this I am sure of. We have been through a lot with the loss of our first son to this disease and then 2 more that had the transplants and one just real mean one! My wife has always been the one at the hospital with each one taking care of them and sometimes knowing more than the people taking care of them. I do go down and visit her but hardly ever go to my sons room, I’m afraid I might make him sicker by being there but mostly I guess because I feel so helpless to help him. I am not what you would call a real smart man. The smartest thing I ever did was marry my wife but I have never found anything I couldn’t fix with my hands. Just the pure helplessness I feel when I see him is hard for me. My wife is much stronger than I am in that area. So I guess I do my part and stay home, work and take care of the other 3 and when I can, steal a moment to call to see how David is doing.If anyone is going through anything like this you know it is hard on everyone but if you need someone to talk to feel free to talk to my wife she can most likely help you, that’s just what she does. I want to say thanks to all the people who think about Captain Snuggles he is in for the long haul, I think.

  5. I’m so sorry your little boy is having to go through all this: He is strong. He, and you, will pull through and be all the stronger for it. I can’t imagine why someone would so insensitive as to ask such a painful questions.


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