Several steps back today

Jenson had a rough night last night. Not feeling well. He's had a low grade fever (under 100 degrees) in the evenings, but last night was moaning a lot more and obviously not feeling well. Needless to say, he didn't get that much sleep.

We had our oncology follow-up appointment today, so obviously had a lot to talk about. His fever was at 100 degrees by the time we got there and he's not wanting to walk hardly at all today:

-Treatment options: We're leaning towards one of the new options. The radiology department is supposed to call tomorrow to set up his CT scan and MRI. If he has LCH cells in the liver or spleen in addition to GI tract, skin, skull, 2CDA (the more extreme option) will be needed. We'll see what the future holds.

- Why is he still having so much stomach cramping several weeks after the surgery? Why is he still getting the fevers?: Could be several reasons, so lots of tests run today (7 hr appt at the oncology clinic!!!).

First it's normal blood draws to look at his counts. They access his port (like normal, only it's more traumatic as he's having flashbacks from the hospital and them taking the tape off that had been on for a week). They came back ok.

The next test is x-rays of his chest and GI tract to rule out pneumonia or c-diff worsening and creating pockets of issues in his GI tract. They thought he might also have a partial blockage in his GI tract creating fever. Luckily, both those came back negative. Whew.

They took his vitals and temperature again, and unfortunately his temperature is now 102 degrees. Not good. Now they are concerned because this is the first time his port has been re-accessed that it may be an infection in his port. They do more blood draws this time to send them out for a blood culture to see if there is an issue. The doctor recommends antibiotics now through his port preventatively until the results come back. The issues is this type of antibiotics could make his c-diff worse, but if we don't do them and it is an issue with a port infection it could put him into "septic shock". Yes, "sepctic shock" is the word used. She says she wouldn't sleep well if we don't do them and would do them if it was her child. As you can guess, we opt for the extra antibiotics and are now nervously awaiting the call on the blood culture results which will come within 24 hrs.

They also do a urine sample to rule out a urinary tract infection.

The final test is a stool sample to see if the c-diff is still an issue or if there is still blood in the stool.

If all of these are negative, the fever would likely be from another virus.

Finally, Jenson gets an iron transfusion at the oncology clinic. He's exhausted by now, so takes a short nap while the brown "coca-cola" looking substance slowly drips down the line into his port. I still can't believe this is what the day has held today.

Thanks to everyone for your continued prayers for healing and support! We're wishing for the events of the last few weeks to be a distant memory soon and longing for our "normal" of chemo treatments but no other additional craziness to return.

Kristin