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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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