A Wrinkle

Quote of the day: “We have a wrinkle”.

No, this isn’t a private conversation between Doug and me about the growing number of stress wrinkles on our face. This is a quote from Dr. Cavalier.

One of the blood tests came back positive for a fungal infection.

She said, “Now I am NOT convinced he has a fungal infection because this test is notorious for giving a false positive reading, but we need to re-run it and run some other tests to rule it out before we start chemo. If we give the chemo and he has a fungal infection, we would kill off all the cells he would need to fight it off.”

Oh, great…more setbacks, stress, and tests.

Let the tests begin.

Test #1 is re-running the blood test. He also needs ANOTHER blood transfusion.

Test #2 is to check for fungus in his nose. How you might ask does one look for fungus in a nose? It is done by looking up both nostrils with a black scope that looks like a long snake with a bright white light as an eye.

Before putting the scope up there, they have to give him Afrin and saline spray. For some reason, this ranks up there on his top 5 list of life’s hated things. He is SCREAMING at the top of his lungs and gagging as they are spraying them up his nose. He is crying so hard he gets a huge petechiae skin outbreak all over his head, forehead, on his nose, and in his groin area. Great, more disease flare ups.

A few hours later, Jenson vomits. Why?

Now it’s off to ultrasound to look at his belly and organs. The technician wisely says, “Do you want mommy to help?” and she has me place my hand over her hand on the machine wand. We rub the gel all over his belly as she takes the images. Her approach works perfectly, and Jenson is a champ the whole time which is a dramatic change versus the ultrasound a couple weeks ago.

We get back, and Jenson vomits again. Why??? I am now suspecting a disease outbreak given his pattern of vomiting when his disease gets totally out of control.

I meltdown from the stress of it all while talking to Dr Cavalier – “Is there ANY way we can get the blood test back and start chemo tomorrow? I am really, really worried about him.”

She is trying to come up with some creative options – love her.

Then they come in with the black “snake like” scope. While no walk in the park, this goes surprisingly better than the nasal sprays. The ENT doctor says there is not evidence of fungus. Good news.

The ultrasound comes back negative for fungal infection in his belly and organs.

The PET scan results come back. Not good news but no big surprises - lots of lesions/tumors in his head, some brain activity, more new lesions/tumors in his shoulders, arms, and legs (which explains why he doesn’t want to walk much).

The initial read on the bone marrow second opinion is negative, although he wants to run some more tests on it before giving a final opinion.

Can you say maxed out? Yes indeed, we have a wrinkle.

Kristin