It took about a week for Sadie to make acceptable counts to
start the second part of this phase and even then, she barely made it. I hate
that because it means that she is starting the phase with the bare minimum
requirement of all cells needed to make your body survive. Good counts were
needed now more than ever. Having the knowledge that I do about this phase and
having gone through this phase before, I knew that it was gonna be bad. I have
tried to condition myself to hope for the best and expect the worst in hopes
that I wouldn’t completely fall apart every time I got shitty news. Bad news is
handed to us so often that if I fall apart every time I hear it, I won’t be
able to keep a level head and focus on the task at hand. The task at hand being
"how do I keep my daughter alive and happy?" Happiness is key. I have
learned the meaning of quality of life over quantity. Sadie has to be happy;
she has to look forward to life. If she doesn’t, she won’t fight. If she
doesn’t fight, we lose.
A spinal tap, IT methotrexate, Cytoxin, 6mp, and Ara-c start
off the first DAY of the second half of this phase. We are admitted overnight for the Cytoxin as
called for in protocol so Sadie’s body can remain properly hydrated before,
during, and after this specific chemo drug enters her blood stream. Welcome to the beginning of fucking hell!!!!
I HATE THIS PHASE!!!!!! I cannot seem to stress that enough so I’m probably
gonna keep saying it. After our 24 hour
hold, we are released. Before doing so,
the pharmacy is notified that Sadie is going home with her port accessed and to
send all chemo drugs and necessary port maintaining equipment to her house. She will be getting Ara-C at home for 3 more
days through her port. After that is set
up, the nurse comes in with release papers and disconnects Sadie’s bag of
fluids. Her line has to be flushed with
saline and then hep- locked every 24 hours, and/or every time something (meds/fluids)
is pushed through it so that the line will stay open to receive the chemo. PROBLEM, the nurse can’t get it to
flush!! Instead of resolving the
problem, she sends us home anyways.
5:00pm. we are home now and it’s time to administer
chemo. I get everything ready, clean her
line, hook up her flush, say a prayer that it’s gonna work, and…………….it
doesn’t. I fuck with it for a while, and
still nothing. The port would flush but not return. This is what I mean and why it’s
important: when a port or vein is
accessed, there has to be a blood return.
For example, when Sadie’s port is accessed, it gets a few mls of saline
pushed through and then the syringe is pulled back on to make sure there is a
blood return before administering anything.
Without a return, it’s not a definite that whatever you are injecting
into that line is going into a vein. If it’s
not in a vein it’s spilling into your body through other means and that can be
extremely dangerous when you’re dealing with chemo drugs. So, I call the home nurse and can’t get ahold
of her. Finally, hours later, she gets back to me and says she can’t make it
out to us for another few hours.
FUCK!!! Knowing that the port needle
is no good, I de-access Sadie and wait for jen.
10:00pm. Nurse jen finally shows up. We break it to Sadie that we have to
re-access her port. Let me remind you
how devastating this is to that little girl.
Her port needle is huge!!! It’s
thick and long and it just looks mean!!! Like any needle, it hurts like
hell. She shakes and cries at the mere
thought of it, but it’s unavoidable. She
has to receive chemo. We restrain her,
get the needle in, hook up the flush, and…….no return!!!!! By law, jen cannot leave a needle in a port
that she accessed without a return so it has to come out. I look at Sadie wondering if she knows what I
know. What I know is this: Sadie has to get this chemo, she is now 6
hours late receiving it, she has no return on her line, that needle has to come
out and she will have to be accessed again.
I walk away to collect my thoughts. I go to the garage, scream, punch
the wall, smoke a cigarette, and say a prayer.
I return to the couch where Sadie is sitting and explain to her what is
happening. I know that we have one more
needle left, one more shot at home, or it’s a trip to the ER. I give Sadie the option. Do you want Jen to try it one more time, or
do you want to go to the ER? I explain to her that if Jen doesn’t get a return,
it has to come out again and we will have to go to the ER anyways. Sadie thinks for a moment and says “let’s try
again”. The needle comes out and the
skin above the port is already bruised and raw.
We prep her for another access, hold her down, put the needle in
and………..no return. FUCK OFF!!! YOU HAVE
GOT TO BE KIDDING ME!!!!!!!!!! Jen takes
the needle out. The room is silent. I grab the phone, call the on call oncologist
to notify the ER that we are coming in, and then I call 4 north (the cancer
floor). I asked to speak with the charge
nurse and the phone call goes down like this: “I know this situation isn’t
personally your fault but it is the fault of one of your co-workers, and since
your charge nurse tonight, it’s your lucky day. I am fucking pissed and someone
on that floor is gonna hear about it, so my apologies in advance. We were sent home earlier today knowing that
something was wrong with Sadie’s port, knowing that she couldn’t receive chemo
without a return, yet they still sent her home!!!! So already she has been accessed 3 times in a
36 hour period if you count the access from the day before which was supposed
to be the needle that stayed in the whole time she was due to receive
Ara-c at home. So, aside from this fact, she barely has any
counts, every time she is accessed she runs the risk of sepsis, especially with
low counts, we now have to go to the ER after just being released from the
hospital 8 hours ago, its 11:00 at night, she still hasn’t received chemo, she
will have to be accessed yet again, and most importantly, I still have to break
it to her that this last access didn’t work and that we have to go back
in. Obviously the port was fucked up
from the first access the day prior so where in her body did the cytoxin and
Ara-c go from the day before cause that was the needle used, that was the
needle in her port that she was sent home with, and that needle had no
return. Why in the fuck would anybody in their right
mind send us home like that? Were they
too lazy to deal with it? Do they not care? Because of their negligence, my
daughter suffers. She has been picked
and poked at enough for the night yet I still have to bring her in to be poked
at again after just leaving there this afternoon. That might not seem like a big deal to you,
but it’s a huge deal to me. I am on my
way in, and my little girl is not going to be accessed by an ER nurse who has
no clue what he or she is doing. So…..I
will call you when I get there and you better have somebody from the 4th
floor come down and access her ONE MORE TIME, and it better fucking work. See you in 45.” I hang up the phone, break it to Sadie, and
we leave for the hospital.
We arrive at the ER, and almost instantly a nurse from 4
north enters our room. She introduces
herself as Andrea and says “You must be Jessica, I believe we spoke on the
phone.” I was very skeptical of her. I know all the oncology nurses, and I had
never seen her before so my first thought was “oh great, a newbie thinks that she’s
going to access Sadie’s port”. Well, you
know me, I gotta ask questions. Who are
you? Where did you go to school? Do you have kids? How long have you been an oncology nurse? Do you know how to access a port? Are you confident in accessing MY child’s
port? I discovered that Andrea had been
a nurse for years and that she used to work at glennon and was just recently
back after doing some traveling to other hospitals. Good education, no kids, confident…… yes. She was strangely understanding and very
sympathetic. This annoys me tremendously
because people really don’t grasp the depths of Sadie’s cancer and how broken
this has made all of those involved that truly love her. I kept telling her how pissed I was and that
she couldn’t possibly understand what this is like for she has no children with
cancer. She replied with this: “I have
been cancer free for ten years today. I
was diagnosed with the exact same cancer as your daughter in my mid-teens and I
remember all of it.”
Silence…………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………… She looked at Sadie and said “honey, I know
this sucks and it’s gonna hurt but it’s gonna be okay. I know you’re sore so I’m going to be as
gentle as possible but let’s do it so we can figure out what’s wrong.” She put the needle in and again no
return. She suspected what we were
suspecting and hoping was the only problem and that was that it was a clot in
the port and not the port itself. Before
she left to go back up to the 4th floor, I apologized for being a
complete BITCH, and thanked her for giving me a sense of hope about Sadie’s
cancer. It’s always comforting to meet a
cancer survivor, but to meet one that has survived the same cancer as my child’s
means a lot to me. I have only met
three, and she was the third. After she
left, the ER doc came in and said they were going to put TPA in her port. TPA is a bad ass blood thinner. If there is a clot in the port, it will clear
it. Could take an hour, could take
twelve. It depends on the clot. We don’t
have 12 hours, we don’t have 6, we don’t have 3, she needs her chemo now. If it’s not a clot then it’s her port. If it’s
her port then she needs a new one. A new port means major surgery which she cannot
have with her counts the way they are. We were told that if the port didn’t
clear than she would have to receive her chemo by other means. By other means meaning IV(vein) or IM
(muscle). Some superficial veins cannot
withstand chemo so those drugs go into the muscle. If it’s going into the muscle, it’s usually
in the leg and you literally have to stab the needle into the muscle to
penetrate it deep enough. Either way, Sadie
was getting her chemo tonight. Because
TPA is so potent, it is injected into the line very precisely. It can only sit
in that line and what’s injected in must come out. Sadie’s port is in her chest, but the
catheter connected to the port follows up through her jugular vein. TPA sits in the line for a minimum of one
hour. After an hour, it’s checked for a blood return. If there is no return, it is checked every
half hour after. An hour after the TPA
sat in Sadie’s line the nurse came in.
She pulled back on the syringe and the blood freely poured from the
line. Its 3:00 in the morning at glennon. The sounds of victory that came out of our
room let everyone know that Sadie’s port was back in business. They all know her well so relief was on everyone’s
face. I gave Sadie her chemo, and we
went home. What a great start to the
second half of this phase and its only day two.
We called Andrea on our way home to tell her the news and to apologize
again. I should not have judged
her. God put me in my place tonight.
Two days later I had nurse Jen come out and take counts on Sadie. It was a Saturday so if anything was wrong,
it meant back to the ER. A few hours
later she called me with counts. Sadie’s blood was low so back to the ER. Three days after that, Sadie was due back in
clinic for another spinal, IT
methotrexate, and to start the second four day week of ara-c. Two days after that, Sadie needed blood and
platelets so we had to go back to clinic. Two days after that Sadie needed more
blood and platelets and since it was so late and we had to go through the ER
again, they admitted us to the 4th floor. Overnight, Sadie started having blood
pressure issues identical to the last time in this phase. Her blood gets so low that there are not
enough RBC’s to carry oxygen to her body.
This combined with the volume of blood in her body, makes it hard to maintain
a healthy blood pressure. More blood
fixes it almost instantly.
Before we were released the next morning, I begged the
oncologist on the floor to keep her admitted.
I explained to her that Sadie’s temp had been lingering in the 99’s at
home and that her body wasn’t holding these transfusions. I explained to her that the last time Sadie
went through this phase the same thing happened and that she became very
sick. I reminded her that Sadie was
severely neutropenic, and that it was only a matter of time before she spiked a
fever and had to be admitted anyways. I
also told her that Sadie would be in need of more transfusions. She looked at me like I was insane. She
refused to keep her admitted so I asked her if we could at least take her home
accessed so Sadie wasn’t getting a new needle every other day. She refused that as well. She sent us home, and that night Sadie spiked
a temp and we had to go to the ER. Since
Sadie proved to be neutropenic, she was admitted. The next morning Sadie needed more blood and
platelets. The doc finally came in and
it was the same bitch that sent us home and wouldn’t listen to a damn word I
said. She accused me of falsifying a temperature
to get Sadie admitted. I was fucking
livid!!!!!! She made the nurses use the thermometer that I use at home and the
hospital thermometers every time they took vitals. She wanted them charted so
she could compare the two. After three
days of this it did nothing but prove that they were the exact same and that
sometimes there thermometers were higher than mine. I took my thermometer back, told her that
this was fucking ridiculous and that she had all the proof that she needed in
her fucking chart. She only hates me
because I will, can, and have proved her wrong.
Urine and stool cultures were pulled the second day of her
admit. I had been trying to tell them
for weeks to test her urine but no one would do it. It came back that she had a bladder
infection, go figure. Since a stool
culture was pulled Sadie automatically had to be put on isolation until the
results came back. It takes a good six
days to get them back so she couldn’t leave her room until then. That didn’t stop her or the other kids from
seeing each other. They set up camp
outside of Sadie’s room, put on rubber gloves, and played whatever they could
through the doorway. The next day, she
was due for three different chemo’s.
Instead of holding them until we figured out where the fever was coming
from, bitch said to give them. The next
day Sadie needed platelets and then again two days later. One day after that she needed blood. Three days later, more chemo. By now, Sadie has a zero ANC and little to no
white count. Nothing came back on the
stool culture, and her blood cultures weren’t growing anything either. This is fabulous news, but very
frustrating. Without a diagnosis, there
is nothing to treat. Where are the
fevers coming from?
Dr. Bohtla is now the doctor on the 4th floor for
the next two weeks. She is my every
comfort in this whole thing. I have
tried to switch Sadie to her care, but that’s almost unheard of for some
reason. I am so grateful when we have
her. The docs take two-week long turns
on the 4th floor, so it’s a toss-up on who you’re going to get and
then you’re stuck with them for a while.
You would think that all child oncologists would be sympathetic and warm
and kind, but that is so far from the truth.
Anyways, upon reading Sadie’s chart and reviewing her counts, Bohtla
gave me the option to try neupogen.
Neupogen is a transfusion given to boost the white count. It is common to use with other cancers, but
it is only given to leukemia patients as a last resort. Since leukemia is a bone marrow cancer caused
by an abnormal white cell copying itself, anything that boosts the bone marrow
is potentially dangerous. The whole
point of all the chemo is to suppress the bone marrow to near death. Sadie’s docs won’t even let her take a
multivitamin because they do not want to feed the immune system. I told Bohtla to give Sadie one more day and
if her counts didn’t come up, we would try it.
This was a very hard decision to make.
Sadie has been neutropenic for weeks, she has no ANC, and her white
count has been sitting at a 0.2. I know
that she is at a huge risk of developing sepsis, and if that happens with her
counts the way they are, she will not survive it. I also know that neupogen can take weeks to
work, and aside from the cancer coming back because of it, it also has some
nasty side effects. The side effect
concerning me was joint pain, SEVERE JOINT PAIN. Sadie has enough of that and she already has
a hard time getting around. All in all,
I had to try it. Dr. Bohtla wouldn’t
have suggested it if she didn’t feel that it was necessary. I trust her 110% and I know that her concern
was the same as mine if we didn’t do it.
The next day, Sadie’s counts actually dropped so we went
ahead with the neupogen and continued that for three days. After the second day of neupogen she needed
more platelets, and her fever came back with vengeance. I was the one that decided to stop the
neupogen. I know it takes a while to
work, but after three days, her counts didn’t move at all and the more drug
given, the greater the chance of side effects.
I talked to Dr. Bohtla about it, and she agreed that we stop and try a
different route. She put in orders for
extensive viral testing. She pulled
every test known to check for possible illnesses and /or viruses in the body
responsible for suppressing Sadie’s bone marrow so low for so long. These tests take DAYS!! In the meantime, Sadie is sitting with no
counts and her fever won’t break. A few
days later, Bohtla orders a CT scan of her lungs and abdomen. Shortly after the scan, Bohtla comes in and
says “we are going to send Sadie for an ultrasound of her liver. The CT scan shows that it is enlarged”. Well instantly this is what goes through my
head: leukemia causes a swollen spleen
and liver, did she relapse? Is her liver
failing because of all the drugs she’s received this past year? As soon as I could collect my thoughts, I
asked Bohtla those exact questions knowing she wasn’t sure yet either. She said “Jess I’m not sure what’s
wrong. Let’s get this other test and go
from there”. The feeling I felt was
similar to the feeling I felt on D-Day.
To top it off, I had been asking Sadie’s doctor for months to check her
liver because Sadie’s eyes and skin were yellow. As usual, she wouldn’t
listen. The ultrasound took forever and
Sadie was miserable through it. Her
abdomen was very tender and in order to get a good pic, the ultrasound tech had
to push on her pretty hard.
After what felt like hours, Bohtla came in the room with the
test results. She said “Sadie has
Hepatitis.” WHAT!?!? How the fuck did she get that??? That was actually my exact question. Nobody could tell me how, but my guess would
be a dirty needle, or through a blood transfusion. I hate saying that, but where else did it come
from? Bohtla pulled the scans up on the
computer so I could see them and several parts of her liver where
abnormal. As far as liver function, we
didn’t know yet. More tests were ordered
for that but we wouldn’t know the results till the next morning.
The next morning arrived, and the tests were back. Liver enzymes were elevated so the liver
wasn’t working properly. These enzymes
were to be monitored daily. The goal is
to let them drop on their own. If they
continue to rise, we’re in trouble. As
far as the hepatitis, there is nothing that can be done to fix it, so as always
we wait, wait, and wait. It can take 6
months to resolve itself!! Dave (child
life specialist) came and got Sadie to take her to the playroom. Bohtla entered shortly after him to talk to
me. She said “you might want to sit down
or get another family member here with you before we talk.” I said “I’m standing, and if it’s that bad I’m
the only family member you’re gonna want in here so shoot.” She told me that she talked to the other
docs and they all suspected that there was a possibility that Sadie’s cancer
came back and they wanted to schedule a bone marrow aspiration first thing in
the morning. I was anticipating
this. I didn’t have to ask what the teams
reasoning behind this thought was because I own the thought as well. Bohtla starts to touch on what would happen
if Sadie did relapse, but then stops herself.
She leaves me to process this. My
thoughts: Sadie’s counts won’t come
up. Her viral testing came back negative
so it’s not an illness keeping her down.
Her counts show elevated lymph’s.
These are fine, but she has no neutrophils to go with them. Something is eating her platelets and blood,
and her whites are pretty much non-existent.
In the event of a relapse on chemo, her counts will not elevate. If there is a relapse in the bone marrow, it’s
not always detectable in the blood as blasts.
It will eventually show itself in the blood, but that’s when it’s at its
worst. If Sadie relapses now, her
chances of survival drastically decrease and her treatment will be ten times
what it is now. She’s been off “count
lowering chemo” for 21 days now so it’s not the chemo, or is it?? This isn’t happening again, she’s okay. She’s just a slow responder, she always has
been. God wouldn’t let this be her
fate. She is meant for great things here
on earth. GOD PLEASE DON’T DO THIS TO
HER!!!!!!!!
FUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I shake it off and go to the playroom.
Dave is lying on the table being “patient” while the kids surrounding
him pretend to be doctors. Sadie is
loving it!!! I see my mom and know that
I now have to break the news to her and everyone else. I pull her aside and tell her. I call mike
and tell him. I call mikes mom and tell
her. They relay the message to everyone
else. I have learned that I can make or
break a situation. When it comes to
Sadie, the family seeks comfort in me.
If I panic, they panic. If I lose it, they lose it. If I say it’s gonna be okay, and tell them I’m
not worried, it puts them at ease. So…….that’s exactly what I do. I put them at ease the best I can, then walk
away and lose it on my own. I walk to
the chapel. I want to walk in and curse
god like I’ve wanted to many times before, but instead I walk in, hit my knees,
and begin to pray. I pray for counts,
GOOD COUNTS!! If her counts come up, no
bone marrow aspiration and no suspicion of relapse.
Morning arrives. Mike
and the grandmas are there. We are holding our breath for counts to come
back. Nurse Kara walks in with the results. NO FUCKING WAY!!!! Sadie is back in business!!!!! Counts are up,
and liver enzymes are down!!!!! Kara
smiles and says “I’m calling Bohtla and having her cancel the bone
marrow”. When Bohtla arrived on the 4th
floor, she came in, smiled, laughed, and said I am so relieved that I didn’t
have to do a bone marrow on her today. I
will never forget that smile!! It was Bohtlas
last day on the floor. Before she left,
she wanted to check Sadie’s ferritin levels.
She said that if her iron was high, it would affect all of her organs
including her liver and aside from that, they hadn’t been checked in a while. The test came back at 4644!!! Normal is 12-150. The last time she was checked, it was at a
1600. Sadie’s blood transfusions are
becoming toxic to her because of the iron contained within them. The fix for this is not easy and cannot be
started until she is in the clear of future transfusions.
Later that day, I received word that there was a
methotrexate shortage. Methotrexate is
the foundation to the cure of leukemia.
Without it, these kids will die.
There are no substitutes, it is crucial!
Every month of Sadie’s protocol calls for methotrexate and 4 months
alone, her treatment was based around it.
There are different forms of methotrexate. The preservative- free kind is the kind used
in the spine during a spinal and the preservative kind is used through a vein,
there is also an oral form. The reason
for the shortage is due to the main plant that produced the drug in Bedford, Ohio
being temporarily closed down in November after federal inspectors said the
company had not been properly maintaining equipment or promptly addressing
defective product batches and sterility problems. That alone is scary because our St. Louis
hospitals receive there methotrexate supply from this plant. Sadie has received 20,000mls of this drug in
a two month period alone. This does not
include all of her spinals or the escalating doses of methotrexate she received
in the phase before this. What the hell
went into her veins and spine that wasn’t sterile? Upon researching this
problem, I have learned that oncology groups around the world are urging drug
makers to “take all necessary steps to rapidly increase access to this drug” to
avoid unnecessary deaths among these children.
Some hospitals are completely out, while others will be out within
days. The hardest to come by is the
preservative-free methotrexate needed for the spine. Using the methotrexate with preservatives in
the spine causes seizures, brain damage, nerve damage, and death. There is no shortage of the oral form. As I’m researching this, I turn the news on
and I see one of Sadie’s docs on TV talking about how devastating the shortage
is and how panicked the oncology teams are.
My stomach turns. I look at Sadie
and want to cry. We have been through so
much shit with this fucking cancer and she will not lose to it because of a
damn drug shortage. Is it not enough to
have to fear your child’s death to cancer every day, but then have to worry
about whether his/her hospital is gonna have the drug needed to possibly save
their life? I don’t know how people
sleep at night knowing this is happening.
These children are already fighting the fight of their lives; don’t they
deserve a fucking break? I will never
understand this world in which we live.
Nurse Kara walks in during my rage and I ask her what she knows about
it. I don’t think she was really allowed
to say, but I found out that Glennon is out of methotrexate and Sadie is due
for a spinal within the week. Upon talking to the other parents on the floor, I
discover that their children have already missed doses of methotrexate because
of the shortage. Between this, the bone
marrow scare, the liver issues, the fevers, the low counts, and every other
fucking thing, I knew I was gonna lose it.
I could not contain my anger and Mike just so happened to be in my path
of destruction. He said one wrong thing
and I came unglued. My mom removed Sadie
from the room as I tried to get mike to go outside and fight me. I provoked him in every possible way to fuck
with me, but he wouldn’t. I’m pretty
sure I hit him and pushed him around, but being the man he is, he never laid a
hand on me. I knew if I didn’t leave the
hospital, I would be escorted out. At
that point, our nurse was getting involved and I didn’t want to scare Sadie so
I grabbed a hotel room close to the hospital and slept it off. I am a crazy bitch when it comes to
Sadie.
Sadie was released the next day. Her counts were still on the rise. We spent 26 days in the hospital this phase
including Valentine’s Day, we were in the ER 6 times, Sadie had 35 doses of
chemo, 6 platelet transfusions, and 5 blood transfusions. In addition to all the bullshit we had just
gone through this past month, somewhere along the line, someone messed up one
of Sadie prescriptions. We went to get a
refill and the doctor says, “What’s that?? I didn’t put her on that”. What the fuck ya mean you didn’t put her on
that because she’s been taking two pills three times a day for the past
month!?!? The med in question was the
medicine that was given to her for her nerves as discussed in the first part of
this phase. The doctor said she put her
on A medicine but not THAT medicine, yet that’s the medicine we were given
after turning in the written prescription to the pharmacist that she
wrote. After doing some research, the
doc came back and says “the pharmacist gave you the wrong script, but it’s okay”. NO IT’S NOT AT ALL OKAY!!!!!! She said the pharmacist researched it and
said it was in the same family as the drug she wrote for and that he checked
for interactions between that and Sadie’s other meds and there aren’t any. Well that’s all fine and dandy, but you’re
just now checking for interactions after she’s been taking it three times a day
for the past month. Aside from that,
what the hell was I giving her? The
script was written for one thing and filled out for something totally
different. Not a generic form, but a
totally different drug!!! The pharmacist
admitted that he fucked up and he was genuinely sorry, but to what point is
that acceptable?
No comments:
Post a Comment