Tue, 21 Mar 2006

Litte bits of information.
Little bits of information can make such a difference. Especially if the parent's of the sick kid are left out.

It's Monday night, what has happened. Nate is still inpatient. Friday night I stayed with Nate at the hospital. He was still running fevers. His IV antibiotics (cephtaz) continued every 8 hours. Saturday afternoon I snuck home for a while (Christa was there). Christa was staying Saturday night, but then she became sick. So, at 2:30am I headed up to the hospital and switched out with Christa. If we're sick, we can't be around Nate since he's severely neutropenic. Sunday morning at 3:30am or so, Nate was running a 102.4 fever... this called for yet another blood draw for a culture. At 5:30 am, he had a 100.3 fever. When he woke up at 8:30am, he had no fever. He was feeling good, etc. I was starting to get hopeful. His counts were now ANC of 100, but not rising very quickly.

About 2pm, the resident doctor said that LPCH had a bed opening up and that they wanted to transfer us up there. I was thinking that was great, but why now? It seemed Nate was doing well, his fever had dropped, and he was acting quite good. Our room mate seemed like he needed to go up there more than us. But, whatever, they had already arranged for the ambulance for transport.

So, hastily we packed up our belongings (luckily Madie was there to help), and Nate and I took the ambulance ride to LPCH. We got our own room, since he had a history of RSV, they thought they'd keep him separate to start with. The resident, Nancy, came in about 5pm and started to fill me in. She said that because Nate's fevers had persisted for 4 days with IV antibiotics, that they were getting concerned it could be a fungal infection. They wanted to schedule a CT scan for Monday to check sinuses, lungs, etc. Also, his ANC was not rising very fast, so they were worried about that, especially since they had seen 1% blasts in his first blood test from Wednesday.

That's when the little bit of information, such a small piece of information, finally was told to me. Blasts. Blasts. As in "Acute Lymphoblastic Leukemia.". Over 2 years of chemo, and here I'm getting the information that maybe the cancer was back.

She went on to explain that none of the subsequent blood tests showed any blasts, but that's not conclusive. Also, the bone marrow can spit out immature cells (blasts) when it is severely stressed. But, we would schedule for a BMA in a few days, and if his counts don't improve, then we'd be checking his marrow.

To make my evening even better, late last night the nurse mentioned that it sounded like the doctor wanted to do a spinal on Nate on Monday. I asked her to have the doctor come talk to me. If they're going to do a spinal, then there was some new information that I hadn't heard. And damned if I'm not going to get the information right away. For a long couple hours, here I am thinking that the latest blood work showed something bad. And they wanted to check for CNS relapse. Yeah, so about 1am, she was in the room and said "sorry about that information, the spinal was for a different patient". That sick knot in my stomach could relax. A little.

Here we are Monday night. No CT scan was done today since Nate has remained afebrile (without fever). And, one of the multitude of blood cultures run over the last 5 days grew some bacteria. So, a specific antibiotic (need to get the name from Christa) is being administered via IV every 8 hours for the next 7 to 10 days. They mentioned that it is hard on the veins, and he's had the same IV in his hand since Wednesday. It won't last much longer. They're talking about putting in a PICC line (temporary central catheter), which should help. Typically they do that under sedation, but I'm thinking we'll be putting Nate out for it. He doesn't sedate well, at all.

That's what I got for tonight. We're not out of the woods yet. If his ANC doesn't recover soon, we're doing a BMA Thursday, checking for relapse. If his ANC recovers, and his fever stays gone, then we might get sent home with his PICC line in, and we'll administer his antibiotics. We'll have to see.

This is scary, scary stuff. Please keep the good thoughts coming. No fevers. Lots of neutrophils. NO BLASTS! That's what we need. That's what Nate needs.

- Greg
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