On Friday I was not able to be present during Liams 3f8 treatment and a dear friend Marge Perry stood in so that Gretchen would not have to go it alone. I am most grateful for the time she dedicated to us knowing quite well what she had signed up to witness and endure. Below is her perspective on the days events:
If it is every instinct in a mother's body to protect her child from
pain and danger, imagine the superhuman strength she must summon to
allow her child to be subjected to excruciating pain. The intellectual
knowledge that this pain may help the child is small comfort when your
arms want to tear him apart from the wicked tube and run, run down the
hall and away from all this as fast as you can.
But instead, against your most animal instinct, imagine sitting there,
rocking your beloved child as he presses his writhing body harder into
yours, hoping you will make the pain go away.
Perhaps you are near the breaking point, but you have been there so
many times before in these recent months. You know how to cry when he
cannot see you, to wipe the tears before he regains awareness of
anything other than this demon coursing through his veins. You would
do anything in the world to take the pain for him…but instead you must
put him through these assaults, and you must hold him and rock him and
withstand the urge to take him and flee.
What you are doing as a parent is as brutally tortuous to you as his
physical pain is to him.
* * * * *
It was Friday, the last day of the first week of 3F8s. Liam and
Gretchen waited in the giant, airy playroom; Liam attached to his IV,
Gretchen huddled beneath the knowledge of what lies ahead. After a
week, she is an old hand at this.
Children wander in and out of sight: little girls in pretty ruffled
dresses, their bald heads adorned with bows, and boys without
eyelashes, their eyes enormous on their barren heads. There are
orthodox Jews and Muslims; blond Midwesterners, Indians, Russians and
Eastern Europeans. Families orbit the space, each seeming to know
where they have to be but not what lies ahead. The parents do not
smile.
A nurse comes over to Gretchen and Liam and greets them warmly. She
chats with Liam for a moment, and then says, "You know what, Liam? It
looks like you'd like to play for a few more minutes. Would you like
to play longer, and I will come back?". Liam nods and says "Yes,
please". The nurse exchanges looks with Gretchen and disappears.
Liam bakes Gretchen bright plastic cupcakes with moon shaped
sprinkles, and Gretchen gives their pretend game every ounce of her
attention. And then it's time. She untangles Liam's omnipresent tubes
from the play things, and they head to their little curtained room in
the day hospital.
There is a routine in place, and Gretchen and Liam assume their
positions. A television embedded in the wall is on with no sound;
Gretchen's bags of goodies take up the only available floor space. She
is on the bed, leaning against the uncomfortable railing that
separates the length of the bed from the windows. Shades are drawn,
leaving only filtered light from outside and the blue glow of the
television. It is like being inside a shadow.
Gretchen and the nurse speak a foreign language about tubes and meds
and procedures; it is a language particular to the cancer ward; a
language you never want to know. The sweet nurse—herself a young
mother—asks Liam all kinds of questions. "Do you want the red light on
your finger or toe?" "Do you want the squeezey on this arm or that?"
"Where shall I…". Even Liam, at age three, speaks this special
language. She smiles and arranges equipment and monitors and leaves.
Liam and I play with Caillou flash cards. We read a story. A different
nurse comes in, and she seems to have special authority. Gretchen asks
her a question in a tremulous voice. I read louder to Liam. Gretchen
is trying to both understand and explain something to this nurse, who
is giving the conversation her undivided attention, but Gretchen's
pitch is rising. They are speaking a language I can't understand, but
I hear Gretchen's frustration, and I am angry too. How could anyone
say or do anything to a woman who is going through this with her
child?
I read louder to Liam, making voices for all the characters in hopes
he won't hear. Caillou's Daddy booms about seatbelts and the pilot
uses his outdoor voice to show Caillou all about the instrument panel.
If the nurse does not say something to make Gretchen feel better, I
may punch her. But she's bigger than me. And will someone please help
that child in the next room? The one who has been screaming in pain
since we got here?
The nurse leaves with promises to Gretchen of more information, and in
between the attention we pay to playing with Liam, Gretchen explains.
She received a mass email from one of the doctors which described the
need for further funding for a certain experimental protocol. The memo
referred to a statistic that was far worse than those Gretchen was
familiar with, and it was terrifying. The nurse, it seemed, was trying
to sort out both what it said and whether it applied to Liam. She left
the room in search of answers.
That is an extraordinary thing about Memorial Sloan Kettering. Every
person I had contact with was responsive and sensitive and truly
trying to ease the burden of both the child and family. They try to
make the child feel like he or she has some control and choice—not
that he is being assaulted. They answer parents' questions, and try to
respond immediately to their needs. They read a mother's aching eyes
or a father's sagging shoulders and they try to help.
But no one can protect a parent form yet another horror of having a
sick child: the rollercoaster of information. One minute, you hear
something that makes you believe it is almost over, that your child is
responding incredibly well, that all will be well soon. The next
minute, you are told (perhaps even casually) something that fills your
entire body with bilious fluid; that makes you angry and more afraid
than you have ever been in your life. But in the very next moment,
your child needs you, and you must press your panic down, compacting
it into a hard mass that you'll deal with later… later. And by then
perhaps you'll have heard something better again, so the mass just
sits there, where maybe someday it will decompose. Maybe.
The next hour is a blur. When did Gretchen ask Liam if he wanted hot
or cold, and in response to his answer hand me a warm pack to rub on
his back? At what point did Liam first press his body onto Gretchen's,
crying out softly, "My body hurts. It hurts". When did she begin to
rock him, chanting "Almost done, almost done, almost done…almost done,
almost done, almost done". When did the sound of the screaming child
in the next room finally disappear, replaced by Liam's plaintive
whimpers, the twist of pain evident in every little note? As she
rocked him, I rubbed the warm pack on his back and kept the oxygen
tube, stretched as far as it could reach around her body to his face,
which was partially buried in her shoulder. 3F8 treatments must have
been designed with octopus mothers in mind: even four arms and hands
are barely enough to do all that was needed.
And as he writhed in pain, and as Gretchen rocked and tried to comfort
him, as we two adults moved in unison, our eyes constantly darting to
the monitors; as tears he'd never know about fall from Gretchen's
pained eyes, Liam is getting well.
Guest Post by Marge Perry
