We had a trip in to
SickKids for E’s third last lumbar puncture this week. My mom came
out the night before to help us out by getting J to school in the
morning. As usual, we didn’t leave as early as I had hoped, and it
took about 90 minutes for the approximately 45km trip.
Having left the
house without a coffee, I was looking forward to grabbing one at the
hospital. Leaving the parking garage elevator, I was dismayed to see
the Starbucks line spiraling out of control. We were already behind
schedule, so the coffee would have to wait.
We registered, then
hit the playroom in 8D for a while. We were called to do E’s check
in, and he was excellent about doing his height and weight. He was
however, difficult when it came time for the nurses to listen to his
chest & check his temperature.
After that, we were
off across the hall to the recovery room. It’s not actually used as
a recovery room until about 10:15am after the first procedure is
done, but it’s also where E has his port accessed after we arrive.
He was brave, and didn’t even flinch when they poked him with the
needle. He was wearing a numbing patch on the access site, and was
distracted by YouTube, but it didn’t even bother him. We ran into a
problem though, when the nurses couldn’t get any blood return from
his port. The team made a decision to inject tPA (tissue plasminogen
activator), a protein that helps to break down blood clots, into his
port. The tPA would have to sit for at least an hour before testing
to see if it would work.
We were then told to
report to the phlebotomy room for a finger poke to collect a small
about of blood for a CBC, and E wasn’t very happy when that
happened. I can’t really blame him though.
After the finger
poke, we reported in at the orange pod, and were put in a room to
wait to see E’s oncologist. I stepped out for a needed bathroom
break, and on the way, I noticed that OPACC had set up their (free)
coffee station. I picked up a cup of coffee, and was talked into
having a breakfast sandwich as well. OPACC (Ontario Parents
Advocating for Children with cancer) is a registered charity whose
vision is to “be
the leading voice and expert resource for families and organizations
navigating the childhood cancer journey”. They
have in-hospital parent liaison
programs, community-based parent support groups, and advocate on the
behalf of
parents and families at the provincial level. Recently, OPACC had a
bit of a setback when their expected levels of funding didn’t come
through: https://mailchi.mp/fc530165ee3b/ssigx6bqnp-971335
If you’re planning on making any donations in 2020, please think of
OPACC, and donate to them here:
https://www.canadahelps.org/en/charities/opacc-ontario-parents-advocating-for-children-with-cancer/
After
my little aside about OPACC, I’ll jump back to our meeting with E’s
oncologist. E was HUNGRY by this time, and he was not happy. I
get it. He’s 3. He’s been fasting for ~13 hours at this point. He
knows we have food (and Oreo cookies). He wants the food, but we’re
telling him no, and he can’t understand why we’re not letting him
eat. We made it through the appointment with E’s oncologist, and we
left for the playroom to try and distract him for a bit. Shortly
after, E’s oncologist came to find us to say that his bloodwork
came back fine, and that she was going to do a slight bump on his
6MP, and methotrexate. He was still receiving a half-dose after his
parvovirus-driven low blood counts forced E to be on a chemo hold for
almost 3 weeks. He’s not back to his previous levels of chemo, but
they’ve been bumped up a bit.
 |
A
playroom doll with its own port (or PICC line)
|
Maybe
15 or 20 minutes after that, it was 11am, and time to report back to
the recovery room to see if the tPA clot buster had worked. Nope.
Back to the playroom, and they’d check again at around noon.
Around
11:15am,
someone from the lumbar puncture team came in to see us. They wanted
to go ahead with the LP, and not wait on his port which may or may
not be unclogged at the next check. The plan was to give E gas to
render him unconscious, put an IV line in a vein on his hand, then
administer the stronger anaesthetic through the IV line so they could
do the procedure. E was still hungry, so going ahead with this would
mean an earlier wakeup, and thus earlier food for him. It sounded
like a good plan, so my wife and I agreed.
What
we didn’t anticipate was how much he didn’t want the gas. I
usually carry him in to the procedure room, and I almost always feel
his body tense up when we enter the room. He’s unconscious for the
needle going into his spine part, so he likely doesn’t worry &
anticipate that. I do think he probably remembers feeling frightened,
and the weird feeling from the anaesthetic before everything fades to
black. A little different this time: I placed him down on the gurney
while he was still awake, and then they tried to administer the gas.
He started thrashing, screaming, crying, and turning his head away
from the mask. I was trying to both hold his head still, and tell him
that everything was okay & that daddy is right here. It was
pretty awful. It’s
a jumble of memories, but I recall him crying while repeating “no
no no”, and asking for help with “daddy daddy daddy”. He’s
scared out of his mind, and I’m holding him down, complicit in the
plan. I couldn’t even get in as close as I had wanted to try and
comfort him because of the gas pouring out of the poorly sealed mask.
The last thing I wanted was for me to accidentally breathe too much
of it in, and then find myself unconscious on the floor. Finally, he
stopped most of his struggling, but he still wasn’t quite out. He
was still fighting to remain awake, and his unfocused eyes were
rolling, and scanning the room. I didn’t notice at the time, but my
wife told me later that 3 of the nurses had jumped in to help hold
him down when he was struggling.
My
wife and I exited the procedure room, to wait in the hall until the
time when the door would open, and they would wheel E into the
recovery room. My wife and I discussed how awful that had been, and
how we hoped there were no more problems with his port access on his
remaining two lumbar punctures. The procedure took a bit longer than
normal, I’m guessing due to the smaller gauge of the IV access. I
sat there holding my breath, numb, and feeling dead inside until they
transported him out and into the recovery room. It
never gets any easier, having to hold your child while anaesthetic
knocks them out. This time was extra difficult.
 |
A
pic of the IV in E's hand, taken moments before he woke up
|
The
procedure was finished at about 11:45am, and he only slept for about
15 minutes. His port was tested for blood return around noon, but it
was still clogged. The nurses administered a second dose of clot
buster. He woke up shortly after that. He woke up in a happy mood,
but was hungry. He wanted Oreos, and he mowed through three of them,
paused for a bit of milk, and then mowed through the remaining two.
He wanted more cookies, but we hadn’t packed more, so I elevatored
down to the main floor to grab myself a bite of lunch while picking
up more cookies for E.
He
was really good about staying flat on his back for the remainder of
the required hour. He was administered his dose of vincristine
through the IV in his hand, and that’s the first time he’s had
that done since day 10 of induction, before he had his port, way back
at the beginning. 1:00pm rolled around, and it was time for check #3
for blood return, and this time it worked! The nurse took the extra
blood that was needed to do the blood chemistry tests, then finished
everything up and de-accessed him.
From
there, all we had to do was pick up E’s prescriptions, buy a new
parking pass, and then we were on our way home. I was physically
exhausted, and emotionally drained, but I felt a sliver of
satisfaction that the day was over, and we should only have to do
this 2 more times.
