May 15 cont...

**Don't take my last post the wrong way, I don't think all health care professionals stink, there are just so many clueless ones out there that it sucks when you're in a situation where you need them the way we do.**

We were just sitting here saying goodnight to one of our favorite nurses, Lindsey, when I realized that I have been so busy prepping for the logistics of the next leg of our journey that I had almost forgotten about the reality of it. I forgot how hard it is going to be. How much I am likely to hate myself for having to do it. How much it is going to suck. How in the hec and I going to get myself out of bed on the 11th knowing what the day holds. Wouldn't it be easier to just hide under the covers like Clayton?
There is no preparing for what will come June 11th; try as I might. I know what the other parents say, but it no doubt fails in comparison to experiencing it. I have heard from every mother that the first day is the worst. There are so many questions: will he scream, cry or just let the tears fall silently. Will his body cringe or go rigid? Will he hold his breath or try to claw his way up my body as I hold him. Have I told you that? We get to hold him during the treatment from what I understand. It's hard to know if that is a blessing or a curse. I know this seems harsh, cruel, even brutal. It is impossible to imagine doing anything to the most precious thing to you on this earth that would invoke such reactions as mentioned above. I can say this though, sharing it here, having everyone dread it with me helps. It helps knowing that George and I are not the only ones dreading the 11th. It helps knowing that even though we are the only ones that will have to experience this hell, everyone else is helping us to carry a part of our burden. It helps us to not feel so alone in our agony over that dreaded day...
There are four nurses who are dedicated to giving this treatment. They do it four to five times a day five days a week and while I'm grateful that experience will be guiding us through this, I don't know how they do this day in and day out.
Another one of those things I've said before is I'm a realist. That said, I am going to post two excerpts here from Liam's parents' blog. The first was written by a friend who accompanied Liam's mom to 3f8. The second has the first paragraph from Liam's mother and the rest was written by the same friend as the first excerpt. This lady is a brilliant writer who paints a very realistic picture:



"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."


**************************************************


"Note: The below was written by our friend Marge who spent the day with us last Friday, September 21st. It was the day of Liam’s bone marrow test which was the last test in the series he undergoes every 90 days. It also was the last day of his fourth round of 3F8 antibodies. (One round consists of five days.) Last Friday was a particularly grueling day. Liam was fine…in fact was quite the comedian who was the shining bright spot in what was a very dreary day. It was one of those days where everywhere you turned you saw or heard pain. I felt like Edvard Munch’s painting, “The Scream.” I pictured myself being that painting. But instead of screaming, I went into “hospital mode” which combines a protective shield of nonstick coating with invisible covers for my ears and a conviction to keep moving…just keep moving. I also wanted to tell Marge to leave…not because I didn’t want her there but because I wanted to protect her from the bombs of bad news landing all around us. A while back, someone we don’t know but very much appreciate posted a quote from Sir Winston Churchill on our blog that has kept me going through the last seven months. “If you are going through hell, keep going.”



Liam looks like Liam again….well, Liam, about six months older than when this all began. He is the most beguiling little boy, with big intelligent eyes--framed once again with gorgeous lashes-- perched above creamy round cheeks. The good Prince Liam is also a very busy fellow: there are wooden trains to push and plastic cupcakes to bake; phone calls to make on his pink plastic cell, and nurses to greet and converse with. He has mechanical devices to operate and corridors to navigate. Where ever he is and whatever he is doing, he seems to have a purpose and an agenda, and the energy to accomplish it.

Liam is rebuilding his strength. He has won many battles, but there are more to wage. And sadly, wrenchingly, all around him are children in various stages of those battles, and each and every one of them is a reminder of how long and gruesome this war truly is.

This past Friday morning began with a bone marrow test. Gretchen handed him over to the attendants, returned to the tiny “bone marrow” waiting area and with a wry smile said, “Nothin’ like dropping your kid off for anesthesia.” Even the tests have risks, and every time your child goes under, you worry.

Worry and anxiety are palpable here. We wait with a handful of parents. Two mothers stand perched against an empty stretcher. As they talk about how some of the other kids are doing, one occasionally swipes at an escaped tear rolling down her face. A young couple comes in with their four year old son in a stroller. We show him Liam’s “puppies” as his story unfolds…They are “newbies” and like many parents here, live a plane ride away. And like so many others, they came to Memorial Sloan-Kettering because their local hospital couldn’t make their child well.

Coming here is no easy task for them, I am sure. They have two other children at home, and the arrangements to be away—finding someone to care for their daughters, who have their own struggles dealing with their little brother’s illness; taking time off work— must add to the nightmare. Coming here is no easy task for anyone. As wonderful as Memorial Sloan Hospital is, it is a place you never want to be.

Gretchen and I sit knee to knee on the little leatherette bench, engaged with the other parents in calmly spoken, alarming conversations.

We learn about a child who didn’t make it. One mother’s tears stream freely; another grows rigid. I immediately think about how different this girl’s situation is from Liam’s… And I see that when you meet a parent whose child is doing well, you make the comparison with hope. When you hear of a child who didn’t make it -- no matter how different the situation-- it is terrifying.

Most of the mothers are young: neuroblastoma tends to strike toddlers and babies. But one mother looks more like me, and it turns out her 18-year old son, who was diagnosed while a teen, has relapsed. Caryn tells me a story about her son getting annoyed at her, and I am struck by how much he sounds like my 17-year-old. We are, for the moment, just two mothers talking. Then she talks about how badly treatment is going, and how anxious she is about the results of the bone marrow test. My gut turns over. It feels like there is a ball of rubber cement in my throat. I want to comfort her, tell her to wake up, it was all just a nightmare. I want this pretty woman with pain in her eyes to have the worries of an “ordinary” teenage boy’s Mom…tell her she better go tend to her son, because he’s all twisted up over a girl and his grades might be slipping. If only that was what she had to worry about…

And I want Liam to come out of that room, RIGHT NOW so we can leave this awful place. We shouldn’t be here, we don’t belong here. Liam is doing great. We need to run away from here. I want to cover Gretchen’s ears. I want to call my son.

There is commotion from down the hall—a child screaming “NO!!!”. They come toward us: a boy of about five, bald like most of the kids here, dressed only in a diaper, holding on to his IV pole, his mother on one side and a nurse on the other. His legs are thick and stiff; his face red and tear-streaked. Through his screams and cries his mother and nurse try to soothe him, to tell him it is a simple test, to tell him he needs it so he can get better. He sobs in fear and anger and distrust, his swollen legs slowly taking him toward the dreaded testing area. He is beyond reason, and the violence of his distress speaks to all of us. He is the physical manifestation, the encapsulated expression, of the fear and terror and anger of all of this.

The four year old boy comes back, groggy from the anesthesia. He cries on and off, telling his parents he hurts, and he says the doctor shot him. We know what he means—the test requires a big “shot” through the skin deep into the center of the bone in order to extract some of the precious marrow. This child saw the scary looking needle used in the procedure.

Liam comes back and fortunately does not remember anything. He drifts in and out as the drugs wear off. Finally, it is time to head over to 3F8 treatment. As we begin to say goodbye to the people around us, I yearn to fold a blanket around Caryn’s shoulders, to tuck her in to a tiny moment of comfort. It is hard to remember she is a stranger: there is instant intimacy when one’s soul is laid bare. I touch her arm and wish her well.

We arrive in the 3F8 treatment room and I see Gretchen has the routines down to a science. This is her fourth round, and she is a pro. Nurses come in and out, adjusting knobs and tubes and dials and talking cancer-speak with Gretchen as we set up the room. Toys go here; lunch goes there. Liam’s books get piled here; Gretchen changes his clothes.

Liam is fully awake and instantly engages everyone who walks in. He has a million questions and a thousand comments. He is earnest and funny and once again, very busy. I thought we’d read some stories, but there is too much to do. A brightly colored cash register is on the window sill, and it is very important that we figure out how many sounds it makes and how many buttons we can push, pull and turn.

Too soon, the 3F8s begin to flow into his body, and he is in pain. Now it all goes in slow motion as Gretchen rocks him, chanting, “Almost over, almost over, almost over”. The tears stream from his eyes as he cries “Owie, owie, owie”. He asks for “Twinkle” and Gretchen sings, rocking him. “My owies hurt!” he cries, and Gretchen closes her eyes, gently rocking and singing. He has learned to stretch his arms above his head, which helps with the pain…but not enough. “Owie-owie-owie!”, and I can see Gretchen, ever calm and soothing, trying to block the pain with the strength of her love.

Slowly, so slowly, it begins to subside, and Liam finally falls asleep. The treatment is over, and won’t be repeated for eight weeks. Eight whole weeks of freedom from 3F8s, the drug that causes intolerable pain even as it helps make him well.

On the way out of the hospital, I see Caryn walking out of the building with her son and husband. She tells me they got their results, and her son is nearly clear. A smile crosses her exhausted face, but her eyes are vacant. She scurries ahead to her family. They have a plane to catch.

This was just one day. One day in the life of having a child with cancer. Imagine if this is what most of your days are like.


And now it is several days later and I am back to my life a million miles away from Memorial Sloan-Kettering. For all these days, images of sweet Liam’s bright smile, his little hands putting coins in the play cash register, and his creamy cherubic cheeks as he sleeps flutter around me as I make the beds, cook, write, drift off to sleep. And so, too, I am visited by the more harrowing images of the cancer-laden legs of the screaming child; Caryn’s tear-stained red eyes; of Gretchen gently rocking Liam, her eyes closed and her face wracked with his pain."