I got a call from Dr. Wright late
Monday morning asking if we wanted to postpone Seth’s clinic visit. She would didn’t want us to come in for
blood work only to have to go right back home.
The visiting nurse did labs on Saturday and his platelets were 71 and
ANC 950 and they need to be 75 and 1000 in order to start his next round so we rescheduled
for Wednesday and to give his counts a few more days to come up.
Wednesday morning we packed up
everything anticipating he would be admitted and begin his next round. Traffic was awful but we somehow managed to
get there on time for our appointment at 9:45 even with the usual diaper
explosion to clean up before heading in.
Seth did enjoy his first ride to clinic in his big boy car seat.
We checked in and were taken back
shortly for vitals and blood work. Dr. Wright met with us afterwards, his chemistries
had come back and all looked great which is awesome because we’ve been watching
those closely and he’s been border line low most of the time. Unfortunately, the CBC was not back yet and
those were the numbers we needed to know if Seth would start chemo today and be
admitted. Dr. Wright went to check in
with the pharmacy and after some time came back and explained the machine was broken
and there were 40 patients currently being held up because of the machine being
down. This is one of those things that
makes you go “huh?” A leading Boston
hospital only has one of these machines and there’s not a local hospital that
these labs could be sent to instead while the machine is fixed? At any rate, we decided to go grab lunch and
she said she would call us if they heard anything. We waited quite a while before hearing
anything.
The results were finally
starting to come back slowly and we found out his platelets were 170 so they
would move forward with his intrathecal chemo.
They were still waiting for his ANC but she was confident it would be
high enough because of where his white cells were. We waited in an infusion room and he was
given some pain medicine and Ativan to help keep him relaxed and sleepy during
the procedure. Around 3pm he was taken
back to the procedure room to have the intrathecal. Unfortunately, he was wide awake and ready to
party so the nurses were going to have to do some work keeping him still for
Dr. Wright. About an hour later the
nurse brought us back to Seth. We headed
back to our infusion room where he finished up some fluids he had started
previously and waited for a room over at Children’s.
About 5:30 we were sent over to
Children’s. Unfortunately, the 9th
floor where we usually go was full so we were headed to the main oncology
floor. I was a little hesitant because
we love our nurses and have gotten used to the way things work up there and
they all know how Seth operates as well.
I was pleasantly surprised when we arrived and there was an additional
bed/gurney in the room for me to sleep on.
A little bit of an upgrade from the flip out “sofa” we usually get. We got the nurses up to speed on his meds and
what he needed to get right away. They
continued to keep up with his fluids. We
still didn’t know his ANC so whenI went to grab dinner Steve asked the nurse,
it was 1150. Both Steve and I were
surprised it wasn’t up more and I was happy we didn’t come in Monday as planned
because there’s a good chance we would have been sent home. Steve left shortly after having dinner and
Seth was rather tired and fell asleep about 7:30. I checked in with the nurse and his chemo
wouldn’t start until about 10:30/11 so I went to sleep as well.
This round he will receive Vincristine
– 5 minutes, Doxorubicin – 2 days continuous, Cyclophosphamide - 3 days continuous, and Leucovarin a pill crushed
and given through his G tube one day after his intrathecal. The Doxorubicin and Cyclophosphamide are
going up in strength from the previous rounds he’s had so I am a little nervous
to see how he handles everything. Last
time, he had the Doxo he had terrible mouth sores and sluffing and I just hate seeing
him suffer but we’ll have to wait and see how this round is tolerated.
I've had a lot of people say he's always so happy and really doing well during all of this. And yes he is a trooper but there are plenty of times where is doesn't feel well at all and is very uncomfortable like he is here:
We spent a lot of time playing in
the playroom this admission. One benefit
of being on the main oncology floor rather than the neuro floor is that
everyone is getting chemotherapy (sad that is a benefit I know!) so each parent
can relate to what you’re going through and it was nice to talk to them and
hear their stories. There were also some
kids Seth’s age that we saw when walking the halls in the Baby Bjorn (which we
did A LOT of) and in the play room as well.
It was nice to see him interact with some other kids around his age even
though they couldn’t play and share too much because we have to be careful of
germs. This floor seems to have a lot of
things to offer the patients and their family which included days where they
offered subway lunch, a sundae bar, a memorial day BBQ and my favorite a short
chair massage for the parents.
Seth tolerated this round rather
well and we were still on plan to be discharged Sunday. He is still receiving both magnesium and phos
nak which cause diarrhea. Unfortunately,
that has been the case since he started his first round. We
definitely keep the Desitin, Aquaphor, and Zout companies in business!!! He did get sick a few times during the chemo
so we put him on a lower continuous feed to try and cut back on the nausea but overall
he did really well during this admission.
Sunday came and it was time to
get discharged. He had finished his
chemo in the wee hours of the morning and sleeping didn’t seem to be something
he was interested in unless he was being held by me. Seth was going to get a blood transfusion to
give him a boost before heading home.
That started about 6 am and ran a little after 9am. I did have to inform each nurse on the floor
of my blood phobia which I always feel a
little ridiculous having given everything Seth is going through and all
the blood related things he needs done but they are always so grateful I told
them because they don’t want to have me fainting or getting sick too. I am getting a little better, they still
cover the main IV pole but I maneuver much better holding Seth and with the
tubing being exposed.
Discharge took a little longer
than expected because there was a misunderstanding when it came to Seth’s
recovery shot. Unfortunately, it wasn’t refrigerated
as needed so we had to wait for another to be brought up from the
pharmacy. Around 3pm we were heading
home.
We don’t have to worry about
coming in the next few weeks for his 5 minute Vincristine like we have with
each of the past rounds. Now we will enjoy
time at home as a family. VNA will come
Monday and Thursday each week to draw labs and we will wait for them to tell us
he needs to come, a fever, or bad side effects that can’t be managed at home.
For now it’s trying to enjoy the
time we have together …
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