Thursday, July 1, 2010

Heads or Tails

After 5 hours at the hem/onc clinic I'm not sure I can make much out of what I learned, but here goes.

1.He does not have leukemia. Not now and not in the near future. His chromosome analysis came back clean. I asked if this meant he was in the clear, it doesn't. Just not coming our way any time soon. It does not reduce his 30% risk. Bummer. Especially because we already knew he didn't have leukemia so hearing it today was like, "Ok, what else ya got?"
2. Although his labs on Tues. looked great, they did not today. His ANC is back down and on its way down further. He is neutropenic again.
3. His biopsy did show "CD56 expression on the granulocytes and monocytes". That can be associated with leukemia but since we know he doesn't have that (from the chromosome study) it can also be associated with autoimmune disease.
4. He has cellulitis around his GJ tube, which is now being treated with antibiotics. That MAY explain the fever from Tues., but not anything before that. Although, the Dr. pointed out he really OUGHT to be running a temp today due to the infection but isn't. This leads her to believe the infection isn't bad enough to warrant a fever and then that does not explain Tues.' temp.
5. His ANA (anti-neutrophil antibody test) is not back yet.
6.  A biopsy of some duodenal ulcers that he had done last year showed pooling of neutrophils around one of the ulcers.
7. His petechiae are unusual because his platelets are high enough that he should not have them. It could be a platelet disorder completely unrelated to everything else.
8.  The doctor said he was "interesting"

What that all means is that it is looking more than ever like it is a autoimmune disorder. The hem/onc called immunology to go over the labs and some history of Tomas' that I brought with me today. She felt like it was an important piece of the puzzle. It was all the bacteria he has grown in the past (which she said people don't typically grow) and that he was clinically diagnosed as septic at birth. Somehow all that bacteria points to something but I don't know what. She's not sure. but mentioned a few things, most of which I can't remember. The one I can is called HLL and she said it is not cancer but is treated like cancer because unless they get it in check it can destroy the healthy cells. Of course that's the one I remember. She would like to start treating him with IVIG infusions. She wants to run everything by immunology and then will call me tonight.
So I can't really make heads or tails of whether we have an answer or not.
P.S. - the bit of info I got yesterday was that he had CD56 show up on the biopsy but the pedi wasn't sure what it meant.


  1. Keeping you all in our prayers! Praying that they have the right answers soon. Lots of love to you all! Trisha

  2. Thinking of you and wishing you had a clearer picture on what was going on.Frustrating.I love the comment, "he was interesting".Seems to be,in my experience,the go to phrase when talking about "our kids" and their extra chromosome.

    Sending prayers from California.

  3. Well, I am just as confused as you. I will say that Ella's chromosome work up showed her having the potential a year before she actually transitioned so to me, this sounds pretty good that it was clean. I realize that it doesn't mean you are in the clear forever but I would have to think you will be for a fairly long time. He looks wonderful in those pictures from the amusement park. He always has such a big grin on his face. Thanks for the update. I have been without a computer while I was at the hospital so had texted Heather earlier to see if there were any posts from you yet. Continuing to pray for answers!!

  4. Things that make you go 'Hmmm'.

  5. In answer to you question, once Ella's ANC goes below 500, she won't be able to leave her room, especially since Little Miss refuses to wear a mask. Her ANC has been sitting between the high 600's and low 700's the last few days so it probably won't be long. How is Tomas?