Sunday, May 30, 2010

What's been going on with Tomas

First, Olivia and her dad are having a bast. She had her picture taken with some of the racers, and got many autographs as well. He is remembering to feed her and keep her warm, and they are both enjoying themselves tremendously. Victoria has been successfully bribed and also made two new friends at a birthday party this weekend so is feeling much better about the whole thing.

Now, on to Tomas. He has a rash. Sounds simple enough, right? Those of you that know us well should not be surprised when I tell you that it "is not your typical rash" (direct quote). 3 weeks, 2 visits to the pedi, 2 lab draws, 1 fax to the oncologist and 1 appt. come Tues afternoon. For those of you that know the game, eosinophils are high and nuetrophils are low. At first the ped thought is was viral, but the rash pattern doesn't match, Tomas has had no fever, and it should have run its course by now. But he went ahead and tested him for all the common stuff  anyway, all negative. Then he thought it was an allergic reaction to something, but I can't figure out what it could be. We have been using the same everything forever around here (I am a creature of habit), and it can't be food. Even though he has started some oral feeds it is the same food I have been putting in his tube for months now. Also, again the pattern doesn't fit. No rash near his mouth or bottom, and there are those darn lab results to tie in.
So what is this mystery pattern? It is on his back. It started about mid torso and then slowly spread down to his tailbone, but no further. Then it slowly spread up his neck to his hairline and just a touch on the top of his shoulders. It has taken about 2 weeks to spread that much. It is small red bumps, and it fades and flairs and some of them fade to petechiae. Sometimes it looks very faded, as if it were from a month ago, other times it looks just as bright red as can be. I haven't been able to find  pattern at all. I thought maybe sweat, but sometimes when he's sweaty it is red, other times it is faded. And the Dr. said that wouldn't explain the lab results. At this point he thinks it is something systemic and has happily faxed everything off to the oncologist as he spent 20 mins on the phone with me Friday morning telling me in very professional language that he has know idea what it is. He then wanted me to get Tomas seen by a dermatologist that day.
Yeah right. On a FRIDAY before a HOLIDAY WEEKEND as a NEW PATIENT??? I called a few offices but of course the Dr's were out. Then I couldn't figure out what to do, so I did nothing (always a safe bet!). Plus, I knew Tomas already had the oncology check up on Tues., so I'm not worried.  My plan now is to see what Hem/Onc says and go from there. I'm hoping I don't have to add an 11th "ologist" to my list.


  1. That sounds so peculiar. Of course why do we think anything is peculiar with our kiddos, right? They just do everything their own way!! Did he give any indication of what the oncologist thinks about it? Are all of his other numbers good, like platelets, Hb and ANC? Well...if it makes you feel any better, Ella NEVER had any form of rash (other than petechiae) prior to diagnosis and her neutrophils were not low at the time of diagnosis. Praying you get some answers soon!!

  2. Now What!!! I just want Tomas all better! am I asking for to much?? I want no bad news from this!
    Keep us posted after your visit on Tuesday. i suppose you won't really know much right away. I hope a barrage of tests are not in Tomas' future.
    Praying you get some good answers!!