On New Year’s Day,
E came down with a fever. He hadn’t been himself for all of the
day. He woke up crying, and was extra cranky – not his usual self.
By 2:00pm, he had started to feel a bit warm, but he didn’t have a
fever. He was also exhausted, and I took him upstairs for a nap,
which he never does anymore. We could tell that he was a bit run
down, with extra bruises on his legs, dark purple circles under his
eyes, and a pale to yellowish tinge on his skin. We let him sleep a
couple of hours, and woke him around 4:00pm. Getting up from his nap,
he was HOT. I had a feeling that we’d be making a trip to our
satellite hospital. Putting the thermometer under his arm, I saw the
numbers race past 36 into the 37s, and finally stop at 38.2°C.
Yup. A hospital trip. What
a way to kick off the new year.
My
wife called her mother, and made arrangements for he to come over to
watch J. We threw together some food, as well as some clothes for
ourselves & E. Upon learning that we had to take his brother to
the hospital, J immediately told us that he didn’t want us to go.
He really missed us & his brother when we went in for the 8.5 day
stint from late November to early December. After
telling him sorry, that he couldn’t go with us, and that he’d
have to stay with Nanny, he proceeded to tell us that he had a fever
too, and that he also needed to go to the hospital. My heart sank.
At
the hospital, it was the usual access E’s port, draw blood, send it
to the lab, and wait. After a bit, the on-call pediatrician came in
to speak with us. She told us that E’s neutrophil counts were at
1.5, and were fine. I celebrated prematurely. She then said that his
hemoglobin counts were at 50, and his platelets were at 25. Normal
hemoglobin numbers are between 110 and 160 for children, and normal
platelet numbers are between 150
and 400 for children. Hemoglobin is transfused when the numbers drop
below 75, and platelets are transfused if the numbers drop below 40.
The low hemoglobin explained the tiredness and the crankiness, while
the low platelets explained the bruises we’d seen show up on his
legs, as well as the little bits of blood with his runny nose. My
wife and I had both increasingly grown more concerned over him on the
30th-31st-1st, and she said that we were going to take him in for
bloodwork on the 2nd,
when the satellite clinic re-opened. Well, the fever forced our hand,
and we went in.
Blood
was ordered, and overnight, as he slept, E was transfused with
hemoglobin over the course of several hours. Around 6:30am, they
started the platelet transfusion, and that one took less than an
hour.
The
next day, January 2nd
2020, bloodwork showed that E’s numbers had jumped, but they
weren’t great enough to be discharged. He would need another
transfusion of hemoglobin, and then we’d have to stay one more
night so that our nurse practitioner & oncology team could see
that the numbers were still trending upward. We
were also told that the team wanted a bit more investigation into
what was going on. Two hospitalizations within a month of each-other
during the maintenance phase is not unheard of, but it doesn’t
happen very often. A couple of more blood tests were to be done to
check E’s liver function, as well as his bone marrow function. They
also wanted to do an ultrasound to check for an enlarged liver, or
spleen. There were a few options of what could be happening:
i)
too much chemo is suppressing hemoglobin
and platelet production by the bone marrow
ii)
the liver, and/or spleen aren’t functioning properly, and are
breaking down hemoglobin & platelets
iii)
ongoing virus
It
turned out that one of the tests showed that E’s marrow wasn’t
making a whole lot of hemoglobin & platelets, so it was suspected
that he’s just not tolerating his current dose of chemo. The team
still wanted to go ahead with the ultrasound of his abdomen, just to
rule that out, even though the other test showed that his liver was
functioning properly. This is the part where, chronic stress,
overtiredness, and anxiety combine to take a toll on you. I had
convinced myself that the team was suspecting that E might have had a
solid tumour in his abdomen. I “knew” that they were telling us
that they wanted to check for an enlarged liver so as not to scare
us, when in reality, they were looking for a malignant mass. My
mind was racing, I had problems focusing, and even though I slept
that night, I woke up feeling as though I had been run over by a
truck.
That
whole day (January
2nd),
E just sat in bed and was content to watch cartoons on TV, or on
YouTube. If you’ve ever met E, you’ll know how out-of-character
that is for him. The kid barely sits still, and will only stay in one
spot when he’s sleeping or in a car seat. When
the 2nd
transfusion of hemoglobin was done by later in the afternoon, you
could see that there was more colour in his face. He started acting
more like himself again, and the day spent in bed came back to bite
us when he decided he wanted to get up and play. He was up and
running from about 8:00pm to 10:30pm, when we took him back to our
room and told him that the playroom was closed, and that it was
bedtime.
We
woke up the next morning (January
3rd),
and we weren’t allowed to feed E, because they were going to do the
ultrasound, and they needed him to fast. Someone from hospital
transport came up to our room just before 9:00am. We followed
transport downstairs to imaging, and assumed that they were ready for
us. Nope. Take a seat in the waiting room. We waited 50 minutes
before we were called for E’s appointment. 50 minutes of a hungry,
crying, unhappy 3 year old in an adult waiting room with nothing to
amuse him. 50 minutes we sat there trying to keep him happy, and for
50 minutes he kept asking us for milk & food. You can’t explain
to a 3 year old why they can’t have food when they’re hungry.
Finally it was our turn, and it was all over in about 5 minutes.
After, we went to leave, and the ultrasound tech told us that we had
to again wait for hospital transport to bring us back to our room. I
stepped into the waiting room for all of about 2 minutes, until I
said FUCK THIS, and took my son back upstairs to his room because the
kid was hungry, and he hadn’t eaten in over 12 hours.
The
ultrasound came back clear, showing no enlarged liver. Not a thing
was hinted, or even mentioned about a tumour, or looking for a
tumour, so I could finally stop holding my breath from the
worst-case-scenario that was self-inflicted by my own thoughts.
That
day’s bloodwork had shown that E’s hemoglobin was continuing to
climb, but that his platelets had slipped a bit. Everything was still
in the okay zone, so no more transfusions were required. We were told
that we would be discharged, but that they wanted to see us back on
Monday for followup bloodwork. We were also told that SickKids wants
to see us one day next week so they can do a bone marrow aspirate
(BMA) on E. Normally this type of test is only done when the doctors
are trying to diagnose leukemia, or to confirm a relapse. Our nurse
practitioner passed along the message from the SickKids oncology
team, and very emphatically said that we’re not to worry, and they
don’t think it’s a relapse. They want some of his marrow to test
for viruses which might explain his ongoing low counts, and this type
of test can only be done at SickKids. I’m trying to stay calm, I’m
trying to stay grounded. But worrying is what I do best. My brain is
making up worst-case-scenarios and is trying to run with them. I
don’t dis-believe what we were told – I don’t think they’re
secretly checking for something without trying to worry us. If it
were a potentially serious issue, they would tell us to get to the
hospital NOW. They don’t mess around with those sort of things. But
it’s difficult to not worry, and to not think about those what-if
scenarios. I’m
not it a great headspace right now, and I unfortunately don’t think
that’s going to change until we have the results from the bone
marrow aspirate.
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