Day 1
Last night got a little rough. There were meds every few
hours and getting Brayden to take them wasn’t easy. The liquids are terrible
and always in large enough quantities that he has to take 2 or 3 swallows. Even
chasing it immediately with water leaves him crying hysterically at having to
finish the dose. It’s one thing to get your kid to take Nyquil in one shot and a whole other thing to get
them to take this stuff multiple shots, and then do it again in a few hours
once they know just how bad it is. It is flavored, but spraying perfume on poo
still leaves you with poo.
The hard thing about this is that Brayden didn’t really feel
sick before, so telling him the medicine is to make him better just doesn’t
register. He knows what is wrong and has had it explained to him, both by us
and by the hospital child advocate, but his brain can’t understand at 11pm why
he is waking up to take a horrible medicine to ‘make him better’ when he didn’t
feel crappy until now. Add in that the medicine makes him feel worse, and all
of your bargaining power goes out the window. And it does make him feel worse.
I have never seen my son fight having to take meds or do what he is asked like
I did late last night, and all I wanted to do was be able to take it for him.
But I can’t. So, then I want to cry for him… but I can’t do that either. The
minute it looks like giving him the meds hurts me, there is no way he is going
to trust that it isn’t going to hurt him. So, I have to be gentle until I have
to be stern so that I can get back to being gentle again. And it blows for a
lack of better words.
He stopped wanting food after eating half a piece of pizza
at about 1pm. He felt okay after that little dose of chemo and while the pain
meds were still running through his system from the spinal tap and marrow draw,
so he was bubbly and talkative. But by 6pm it was clear he was hitting the
wall. The ‘bad’ meds were catching up to him and the ‘good’ meds were wearing
off. He was asleep by 7, but up every hour either because we forced him up for
medications or because his spinal and marrow draw sites were hurting him. He
also cannot go to the bathroom, so he has to pee bedside into a container (for
easy testing). His back was hurting him so much that he couldn’t even stand to
do that. We made it work, but not without many tears. On another note, the
medications make his urine smell like rotten eggs, so some light teasing about “stinky
pee” lightened the mood up a little.
His stomach started to get upset, so the pepto-pink tub made
its appearance at the end of the bed ‘just in case’. Thankfully it wasn’t
needed. At about 11pm, and after his last dose of liquid hell, I crawled into
bed with him. They were able to check his vitals and flush his picc line
without waking him for the rest of the night, and he slept better with me in
bed with him. In fact, I have spent most of my time next to him since then.
7am came and brought back the cheerful character with it.
So, it was nice to see him smiling and eating and feeling good. Throughout the
day the children’s oncology wing had various things going on for Easter. We
were visited by Shamu and a dolphin, both nearly too big to fit in Brayden’s
little room. There was an easter egg hunt on the floor too, but Brayden’s back
and hip were painful, so they came into his room and hid them for him instead.
Everyone here is just amazing. I guess you have to be some kind of amazing to
come to work every day with little ones fighting cancer and put a smile on their
face, and they do it well. They had too therapy dogs in the wing too, though I
don’t think they came to see Brayden.
But the early part of the day was pretty relaxed. Lots of TV
and game playing, some eating, and some bathing. The child advocate came in and
spoke with him about cancer and what it means, reinforcing that it is not his
or anyone else’s fault. I think it is kind of lost on him since he still doesn’t
feel super terrible all the time. It’s like trying to explain politics to a 7
year old, they just don’t relate to it yet, so it is just another thing an
adult is telling them about. He did pay more attention when she mentioned that
his hair will probably fall out, but once he was assured it will come back he
was back to glancing at the tv and being 7 years old.
It is all still kind of surreal and disconnected sometimes. He
looks okay right now and is chipper much of the time, so you get comfortable a
little bit, and then discussions of hair falling out, when to rush him back to
the hospital, and the chemo plan happen and it all floods right back. My son
has cancer, and even when he gets out of the hospital, he will have cancer. And
when he goes back to school he will have cancer. It isn’t the flu.
Rollercoaster ride doesn’t even begin to explain what it is like to hit that
fact throughout the day.
I got to meet with the doctor and we found out his spinal
test was negative, which is awesome. We won’t get the chromosomal test (marrow)
until next week. His treatment plan may need to be adjusted depending on those
results. He may be released Sunday, but will need to be back Thursday for
chemo. It’s worrisome to know he will be out in the world when he is dealing
with a compromised immune system, and even the doctor said he will most
definitely get an infection at some point, but I am sure a kid’s morale stays
stronger when they get to go home… and that’s a big part of the fight.
They were able to switch his meds to pill form today, so
that is a plus. He is getting better at taking them and there is less fight by
about 400%, though the pills are not coated and he hasn’t learned to do it fast
yet, so it is still not the highlight of the day. He was given something for
upset tummy in the early afternoon. Then they came in to give him his first
chemo treatment.
The seriousness of that medication is immediately evident
when they bring in gowns, gloves, and a tray of prep items. There is a second
person who comes in and has to witness all of the different checks and stages
of the process, which is just an IV push but is suddenly much more complicated
and involved. There are checks and times recorded, and precautions to take. Brayden
couldn’t be wiggling like he would be normally without too much consequence or
extra work on the nurse’s part to get whatever he needed in his line. He had to
lay still and flat. They draped him to be sure that if any of the medication
dripped, it wouldn’t touch his skin. Then, after they were done, they
instructed me to start wearing gloves when helping him go to the bathroom,
because my son’s bodily fluids are now harmful to me. My son’s blood and urine
are now poisonous. Toxic.
I took a picture so it could be a smiley moment rather than
a scary one, since all of the extra stuff and palpable seriousness was making
Brayden visibly nervous. So, chemo #1, Day 1 is documented with a smile, rather
than a crappy memory. After that was done, she came back later with his steroid,
which he would need to get one other time before midnight. It will cut down on
inflammation from the drugs, and a side benefit will be that his appetite will
get stronger (unless he feels sick obviously). Steroids can also result in them
wetting the bed, so that is a concern given the circumstances.
By 6pm, he was flying low again… quiet, droopy eyed, and
worn out. It is hard to see a kid who is normally wired to the max until the
wee hours of the morning if left to his own devices suddenly exhausted by 6pm.
I stayed until about 7pm, but last night was Joe’s night to stay with him while
I went to hang at the Ronald McDonald house. Which, might I add, is a great
place. Everyone is so nice and everything you need is provided, though
donations are welcome and encouraged. It is such a blessing to have a place to
go to do laundry, shower (Brayden’s shower is a bit on the wee side), and sleep
on a bed not meant for a child, and it is just steps away from the hospital. However, I can't help but prefer my spot on that little bed, where I am there if he needs me, to being even just a little ways away.
I will have to find a place in Daytona soon, since he may be
able to leave by Monday. There are some programs that may be able to help with
costs, which would be amazing since I am still paying for everything back in
Ohio. But the first month is a given as far as treatment goes, so no matter how
good tests come back or how well he does, I am here for at least that long.
