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Tuesday, July 31, 2007

Tuesday July 31st Update

Round two of 3F8 treatment was about the same as round one, except with enough experience so that it wasn’t such a shock to the system to see our little guy in pain. The pain for round two was different. Liam actually said, “owie owie owie” this time instead of just saying he wasn’t comfy. He seemed to have more discomfort. He despised the daily morning injection of medicine to stimulate white blood cell production. The process required Larry restraining Liam so that I could line up the tip of the needle with the small tube in his arm all while Liam screamed, “WAIT – WAIT – WAIT – WAAAAIIIIITTTTTTT!!!!!!” He also was nauseous almost every day. Most of the time he would warn us throwing up, but not every time. On Tuesday, the day I had a friend visiting who hadn’t yet seen Liam or been involved in the world of pediatric cancer first hand, there was no warning. On that day, the remains of a slice of pizza, chocolate chips, and milk went all over me and soaked me down to my underwear. Liam and I have been down this path of throw up…he and I know what to do. I found myself more concerned for our visitor knowing that the scene might be uncomfortable for her from both a sight and smell perspective. To be covered in throw up didn’t bother me…I’m used to it…all I wanted to do was tell our visitor that it was OK and get some clean sheets to drape over me so that I could keep holding Liam who was saying in his slurred narcotic-induced state, “oh no mommy…oh no mommy.” I was smarter after the first throw up session…I added an extra change of clothing for me to the hospital bag. One day he made it through his time at the hospital without vomiting, but couldn’t make it home. Luckily the cab we were in was stopped at a red light and Liam gave me enough warning so that I could open the door and let him throw up onto the street instead of in the cab. When the light turned green, I told the cab driver that he wasn’t allowed to move. We were the first car at the light. Cars were honking behind us. He didn’t move an inch. I kept trying to comfort Liam as he threw up over and over again onto the street.

His evening pain, what’s referred to as residual, wasn’t as bad in the evenings as it was the first round. But, he still was pretty out of it and wanted to be comforted and coddled. Most nights were spent with Liam falling asleep on top of either me or daddy. And, true to Liam spirit, whenever he did have residual pain he refused to take any pain medication.

The routine through Thursday was the same - go to the hospital; do our session of pain; hold Liam in the exact position he indicated was the most comfortable which usually was one of discomfort for the holder; wait for Liam to say he was recovered enough that we could leave the hospital (he doesn’t like it when you try to move him too soon); come home; comfort him as much as possible; and then go to work. On Friday in an effort to avoid a throw-up session in the cab, we walked home. Liam slept the entire time amid cars and trucks honking, the bustle of people walking by him, and going down and up nearly 50 sidewalk curbs. And when I saw people looking at the little boy sacked out in his stroller, I wondered if they were looking at him because of the slice of Americana in the midst of Manhattan or because of Liam’s thin hair. Most of the time I avoid the look in people’s eyes. I’ve had too many instances of seeing people glaring and staring at our Little Prince which makes me feel fiercely protective, angry and sad. I also have a hard time looking at other toddlers being pushed in strollers by nonchalant parents or nannies. It makes me profoundly sad knowing we will never be able to basque in the bliss of good health. We will always have the fear of cancer nipping at our heels. But then there’s another side of me that is much, much more aware of everything that my children do…everything is more precious. Every smile. Every hug. Every cry. Every “I love you.” Every time he wants to hold my hand. I find myself drinking in and savoring everything with much more awareness.

Overall the week was one where on some days I heard the screams of pain from other children, but on other days I didn’t. There are parts of me that are just numb and others that are acutely aware of everything.

We met Daddy and Ella in front of the New York Public Library on 42nd Street and walked home together. From the minute Liam was aware that Daddy and Ella were near, he wanted to be able to see them even if it meant taking up most of the sidewalk with side-by-side strollers. And then Daddy mentioned the fire station. Liam finally woke up enough to show interest in something. And as we were deciding whether or not he was up for a visit, Liam decided for us by pointing his finger in the direction of the fire station. So off we went. And when we arrived, Liam got out of his stroller and started his inspection of the “his station.” It was like watching a butterfly emerge from its cocoon. He wanted to see everything and then asked for Fireman Milk, Fireman Chocolate Milk, and Fireman Ice Cream. And the guys at the fire station treated Liam as just one of the guys. And for that refuge away from stares….we are so incredibly grateful.

Liam’s expressive eyebrows and enviable long eyelashes are back. And you can see a fine layer of hair growing back. It’s very short but it’s growing…every day it gets a little longer. It’s still hard to tell what color it is but it’s definitely coming back. Next week we have a break from the hospital We’re there on Monday, July 30th, for a bone marrow test that is done under anesthesia and on Thursday for a blood draw in conjunction with the start of Accutane. Yes, Accutane. Our next challenge is to figure out how to get three pills of Accutane down Liam every day. He’s three. He doesn’t know how to take pills. But Accutane has been found to be very effective in attacking immature cancer cells…so somehow we’ll need to figure out how to deal with this challenge. I’m sure Liam will help us.

Someone recently noted that we don’t seem to be encouraged by how well Liam has done. It’s not that we’re not encouraged but we’re also aware of how relentless this cancer is to not be guarded. There isn’t a doubt in my mind that Liam will win this battle and that we’ll be watching him graduate from Dartmouth in 2025. There have just been too many strange coincidences, signs, overwhelming outpouring of support and amazing progress by our Little Prince to not believe that he isn’t going to be the next cancer researcher. But we’re also not at a point where we can relax. We are still very much in the thick of the battle and trying to figure out how to deal with this new reality which requires straddling two very different worlds. We’re not happy and we’re not sad. We’re tired. We’re worn out and we have little tolerance for things that truly aren’t that important. We’re trying to take everything as it comes but if you’re someone who likes order, this new reality can be tough to accept. We’re also still very engrossed in the scary world of the hospital where life and death are much more immediate. It’s hard to see the future because everyone we’re with is in the same boat that we are – a boat that is floating but still too close to the seas where it capsized to be a memory. But I can hear words of encouragement being used by our doctors which of course bolsters our spirit. For the first time, one of the particularly cautious doctors talked about a life outside of the hospital that was waiting for us. To hear those words was a big deal coming from a doctor who typically holds back on any words other than caution. We’re not doing any counting of chickens yet…we love our son too much to make the blind assumption that he’ll always be here. We do, though, see a time when we can go to London to meet his pen pal and feel comfortable being far away from the hospital. And we do see a time when Liam’s first words after he wakes up aren’t, “I’m ready to go to the hospital.”

And now, as we struggle to figure out this balance between what was and what is we also are figuring out what next. What do we need to do to make sure the meager $2.1 million in pediatric research funds that were redirected to the war in Iraq are given back to researchers who have dedicated their life’s work to children? Do we forget the government and do it on our own? I’ve told friends that I feel like my whole life has been a dress rehearsal for this experience. Pediatric cancer needs us. More than 80% of children who are battling cancer are in some sort of clinical trial…just like Liam. And yet the advances that have been made in pediatric cancer are astounding. Again I find myself questioning if it’s all just lip service that children are our most precious resource. If they are…why are we not supporting them more? What do I need to do to change this?

Friday, July 27, 2007

Friday July 27th Update

Radiation week. In a period of seven days, with a two day break for the weekend, Liam was under anesthesia 14 times while he received 14 rounds of radiation. Each session was short…fewer than five minutes…but it seemed like an eternity knowing that his little body was being pummeled with dangerous beams of radiation precisely pointing at the site his tumor was located. His body now sports tiny permanent tattoos that helped guide the radiation technologists while setting up the machine. The risks of not hitting the same spot with each radiation session were too great to not use a permanent system to mark his body. Those tattoos will also serve as markers should Liam need radiation in the future. Essentially, they’ll know where not to radiate him in the future since you can’t radiate the same area.

The process every day was the same. We’d have to be at the hospital by 7 a.m. (Liam insisted on wearing his jammies to the hospital); go to the IV room on the 9th floor; wait; get hooked up to fluids; go down to the second floor; yell, sing or hum Old McDonald through the hallway with echoes while I explained every day why this particular hallway had echoes while the five other hallways on the way to the radiation area didn’t; wait sometimes more than an hour for a radiation technologist to summon Liam from the “tiny play room” complete with a play kitchen and miniature-sized radiation machine for simulation play; go to the radiation room; make sure it was his picture showing on the monitor positioned up high on one of the walls; hold Liam in my arms while the grips of anesthesia forced him to sleep; carefully place his limp body on the hard table; kiss my son good-bye; say a quick prayer; leave the room with 1-foot thick walls and door while a team of people hovered over him to prepare his body and the machine; meagerly walk back to the recovery room to wait; do e-mail while watching for him to be wheeled into the room in a small hospital bed with a monitor loudly but assuredly beeping his vital signs; inspect and fret over my baby while waiting for him to wake up; change him from jammies to clothing; hold him close to my chest the minute he woke up; put him in his stroller; figure out how to kill five hours until the second radiation session of the day while keeping him entertained; and then do it all over again. But here’s what amazed me. Liam loved the process. He would wake up around 6:15 a.m. each morning, come find me and announce he was ready to go to the hospital to have his picture taken. The radiation machine looked similar to a CT scan machine which also looked similar to a MIBG scan machine – “picture machines” Liam is all too familiar with by now. So for him, this was simply a different kind of picture…in a room with pictures of leaves on the ceiling. He liked it so much that after the second day, he marched to the room without needing me to hold his hand and instead held the string of lady bug pull toy that played “Old McDonald.” He passed five radiation rooms along the way – each with two or three attendants – and said hi to each person he saw and announced he was going to get his picture taken. When he walked into “his room” which was the last one in the row, he looked for the anesthesiologist, announced that he was ready to “rock and roll”, positioned the lady bug pull toy next to the radiation table; stepped on the step stool usually used by people decades older; and then rock-climbed up the side of the table to reach the top. He would ask the anesthesiologist, there was a different one every day, if he could help and then would push the white-colored anesthesia into his tubie. I would hold him while he pushed the end of the syringe under the watchful eye of the anesthesiologist. It took about 10 seconds for it to take effect. And then he was out and I was being silently but definitely encouraged to leave the room. The second he was asleep, loud beeps and other strange noises would sound as the machine and Liam were prepared for their rendezvous. The tone of voices in the room immediately shifted from friendly to business like. And as much as I wanted to stay and watch, I would walk back to the recovery room to get in as many e-mails as possible before Liam returned. When he woke up in the recovery room, he never asked what happened and never seemed surprised that he had fallen asleep or been moved to another location. He just wanted to be held and rest his head on my shoulder. And when he announced he was ready, I was allowed to put him in his stroller where he would flip over, tuck his knees up into his chest with his butt up in the air, and fall asleep.

Between sessions he couldn’t eat and could only drink clear liquids up to two hours before the second session. Liam learned the meaning of clear during radiation. Every day he valiantly tried to convince me that milk, his beverage of choice, was clear. And when he gave up on trying to convince me that milk was clear, he shifted his focus to ice cream. By the third day he would point out clear drinks and then work on getting me to buy every clear drink. Even though he couldn’t eat, the one place he wanted to spend time every day was the cafeteria. He would stand at the end of the railing normally reserved for holding trays while I bear-hugged him from the waist down to keep his shaky anesthesia legs firm, and intently watch the short-order cooks making eggs and pancakes. He wanted to know every step of the process for making eggs sunny side up, over easy, scrambled, and fried. He didn’t want to eat anything – he knew he couldn’t – he just wanted to watch and learn. One day during the week was Employee Appreciation Day and to note it a special smoothie station was set up. Liam was completely fascinated watching all the different combinations of smoothies being prepared. By the third day, Liam was greeted by cafeteria employees and his dream of watching popcorn being made in the large popcorn machine, something he has wanted to see since his first week at Sloan, was fulfilled. He was given a tall chair on wheels as a new perch to watch the workings of the early morning shift in the cafeteria. He would position his hands on the arm rests, tap his fingers, and survey the orchestration of the breakfast operation. He was in his element. We would walk around the cafeteria, he would pick out foods he wanted to eat, we’d collect them all in a box, and then carry them around the rest of the day until he could finally eat. He never complained about not being able to eat. He would just look at his food and change his mind every five to 10 minutes about what he would eat first.

The other four hours we spent playing in the sandbox of Sutton Place Park along with other children, watching boats go up and down the East River, and trying to discourage him from pulling flowers from the Trump apartment building flower bed. It was a triumph and bitter sweet to have Liam playing in a sandbox along children his age. He always wears a hat – he has always been a big hat lover – so no one knew he was a cancer patient between radiation sessions. But to be so close to other seemingly healthy children and their parents or caregivers was difficult. I reveled in the fact that Liam was there. I regretted the fact that our lives have forever been changed. I don’t like cancer. I want it to go far, far, away but the reality is it will never be further away than a three-month workup for a long time.

One morning we were greeted with torrential rain. After trying for more than 20 minutes to find a cab, a car service car stopped and asked where we were going. I told the driver. He told us to get in the car. I took the rain shield off Liam stroller as quickly as possible to keep him out of the rain, held him at arm’s length so he wouldn’t touch my dripping-wet jacket; he got a little wet and was quite unhappy, and off the car took for Sloan. And then the questions started. “Is it genetic?” “Did you suspect?” “Were there symptoms?” “How is he doing?” “What do you mean it isn’t genetic – you mean my son could get it?” “How would I know?” “Is he in pain?” Liam was fascinated with the dual DVD players in the car. I tried to answer the driver’s questions, but weighed what I was saying against the fact that Liam was with me and awake. I tried to be as informative but as vague as possible. When we arrived at the hospital, the driver pulled up onto the curb under the awning of the hospital so that we wouldn’t get wet. He scurried around the car to help us out and told us to call him any time. It turns out that he lives three blocks away from our, as Liam calls it, city home.

After the second radiation session, Liam would ravenously eat his selection of foods from the cafeteria. He couldn’t eat fast enough. And even through a drug haze and slurred speech he would tell me how good the food was. It’s now over and we can check add another check to the list of treatments completed. Up next? A week of 3F8 beginning Monday, July 23rd.

Monday, July 16, 2007

Monday July 16th

Two days of radiation down. Five more to go. He has two sessions/day that are six hours apart. Before and between the sessions he can’t eat and can only drink clear liquids up until two hours before a session. Liam is doing great. He literally runs to the radiation room saying hi to everyone he sees eager to have his picture taken. He squeals with delight when he sees the radiation technologists and anesthesiologist waiting for him. It’s not until the eight-inch thick door closes to seal my son in a room with dangerous beams of radiation that I can let my guard down and be fearful. And then, three minutes later, it’s over and we’re back to shepherding Liam through this maze of medical treatment and trying to make everything seem normal and turn it into a learning experience. He hasn’t even noticed the new tattoos he’s sporting that help line up the radiation beams. And if he did, he’d probably take it all in Liam style…wanting to know why they’re there. His latest thing is telling us he’s “not in the mood.” He’s so cute about it…we’ll ask if he wants to do something, and he’ll look at us and say, “No, that’s OK, I’m not in the mood.” He also has a very dramatic flare when saying the word, “Really,” when he’s excited about something. He bends his legs, puts his hands on his knees, looks up and says, “REALLY?” It sounds more like, “Willy” which makes it even funnier. He also is very much into Ella and Ella is very much into Liam. They look for and out for each other and are each other’s best buddy. Liam loves to sing “Twinkle Twinkle Little Star” to Ella when she’s going to sleep and she yells his name in the morning to look for him. “We-Um!” “We-um!”

We haven’t been able to write this week. There has been a lot of sad news swirling around us which saps our energy and shakes a shaky foundation of holding everything together. And now that I’m able to see people since chemo is over, I’m having to bridge the gap between cancer world and my world before cancer. It’s harder than I thought it would be. It’s hard when you sense that people don’t know what to say so instead ignore you. It’s hard when someone tries to tell me to look on the bright side when I know how relentless this cancer is. It’s hard when someone asks you to tell them the latest when I’m desperately trying to keep my eyes dry and wish they’d just read Liam’s blog. The easiest thing is when someone picks up from where we left off instead of making me relive where I’ve been. I think people think our story is over. I so wish it was. We have a ways to go, 23 months to be precise before we can breathe just a little bit easier. But we’re making it…one day at a time with some days being longer than others. Liam is just an amazing ray of sunshine who keeps singing “Oh Mr. Sun, Sun, Mr. Mr. Sun, Please Shine Down on Me.” And every morning he proclaims, “The Sun Came Up! The Sun Came Up!”

I find myself every day thankful at how many people have become part of the city of people surrounding and supporting us. This is a long battle. We’re not even five months into it and have a long way to go, but having others on board makes it more bearable. And on the days I’m feeling particularly lonely and drained, I look up at the simple “Get Well Liam!” message spray painted in bright orange letters on the construction draping on the building being erected across the street from Sloan and gain strength.

Wednesday, July 4, 2007

3f8 Observers Perspective


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

Tuesday, July 3, 2007

Tuesday July 3rd

A new day, a new medical treatment to master. This morning we met with the radiologist who will be doing radiation treatment on Liam’s primary tumor site. It’s a necessary part of his treatment and one that we’ve known is coming. But here’s the scenario. First, there are no signs indicating where elevator bank R and no one seemed to know. (“Elevator R – There is no Elevator R here!”) After a bit of a wild goose chase, we finally came into the doctor’s suite of offices through the back door…literally. (There is an elevator R but can only be accessed by 67th Street, something someone forgot to mention to us.) After a wait in the proverbial waiting room, we were led into a small examination room. Liam wanted to know who we’re meeting with, why we’re meeting, and what we’re going to do next. We have our normal bag-o-distractions – DVD player, collection of DVDs, lollipops, stickers, Caillou books (every one of which has been sent to Liam from his magical elves), magic juice, fruit chews, puppies, pillow, soft yellow blankie, and Caillou flash cards. These meetings are starting to become a huge source of frustration for us as parents. Imagine going over very important information, most of which you’ve never heard of or have no experience with but trying to understand so that you can ask the right questions while entertaining an active three-year old. And, more disconcerting is having a conversation about Liam’s health in front of him which is exactly how the meeting started out. Liam knows when he’s being discussed. He immediately retreats and gets very quiet. The meeting was even more frustrating because there were no clear cut percentages that could be given as to why we should also radiate his leg and hips, where he also initially had cancer but now is clear. Why would we want to expose our son to more radiation which we know can cause secondary cancers in about 15 – 20 years without statistics showing that if we put him at that risk, the neuroblastoma cancer cells won’t return? Of course, all this is happening while Liam is examining the small refrigerator in the smaller examination room trying to understand how the side walls on the outside could be warm while the temperature inside is cold. And when he discovered a thermometer in the refrigerator which he initially thought was a clock, it was a giant new discovery for him that stopped the meeting completely. We heard that a 1/3 of Liam’s right kidney will be hit with radiation beams which will impact it…but to what extent we don’t know. We heard that if we radiate his leg it could impact his growth – by maybe an inch – but it’s not a definite. That’s what’s so frustrating about medicine – the ambiguity. We heard that COG – the Children’s Oncology Group which is the national protocol group – would only radiate the primary tumor site, not the places where there originally was cancer – but we didn’t hear if that approach is more successful. We heard that Liam’s response to treatment has been excellent. But without clear answers, we left the meeting with more questions than answers. The radiologist and Liam’s team of doctors will be discussing the pros and cons to radiating his leg and they’ll tell us today what they think, but ultimately the decision will be ours. Radiation simulation will happen today and Liam will need to go under anesthesia for it. It requires him lying perfectly still on a table while they line up the radiation beam, hence the anesthesia. He’ll also receive a few small tattoos that the radiologists will use to pinpoint where the beam should point. There’s no margin for error with radiation. The tattoos are permanent but so small they look like dots. Radiation begins on Thursday and goes for seven consecutive days. There are two sessions/day – 8 a.m. and 2 p.m. Each session is about 7 minutes long but each is done under anesthesia which means no eating until around 2:30 each day and drinking clear liquids until two hours before each procedure. But, we’ve also been told that he’ll not have much of an appetite during radiation so eating hopefully won’t be too much of an issue. Ah…back to the no appetite. I’m not looking forward to the radiation sessions. I know it’s a necessary step and another weapon in the bag of tricks, but I’m just not looking forward to it. Before the doctor arrived in the exam room, Liam was practicing counting. Except for mixing up 11 and seven, he counted to 10 on his own. Somewhere in the odyssey of the past 16 weeks he learned to count. And he learned almost all the letters in the alphabet. As much as I dread radiation, I just want to get it over with. It will be another thing I can scratch off the “to do” list in keeping cancer at bay.

Monday, July 2, 2007

Monday July 2nd

I’m not even sure I know where to begin. What kept coming to mind as Liam was going through the height of pain during the infusion of 3F8 was labor. I felt like Liam was going through labor every day, for five days in a row. Our job was to do everything we could to comfort Prince Liam as he struggled through the intense pain. And just like there are some women who go through labor saying very little while others are quite expressive, there are some children like Liam who are quiet as they deal with the searing pain while others scream so loud that it shakes the core of your soul. The screams are the kind you hear when watching a horror movie…shear terror. How can this be happening? What wrong turn did I take that we find ourselves here? But then I have to remember that I’m at the only place in the world that this treatment is available. And there is only enough to treat 100 – 200 kids a year, since it’s not in mass production. Scratch the thought of a wrong turn. We took a right turn to be here.



The first day of 3F8 treatment was the worst. It was the day we needed to figure out how much pain medication to give Liam to relieve as much of pain as possible without giving him more narcotics than his little body could handle. It was the day we needed to see Liam’s reaction to the treatment - would he be a thrasher and screamer, would he be angry and belligerent, would he be a child who would hold his breath causing other kinds of complications, or would he be inconsolable? We had no idea what to expect. The process started early Monday morning with a finger stick – the first time he has had to have blood taken this way and it was as bad as I thought it would be. We tried a little play acting – I had my finger pricked first. And then it was Liam’s turn. He wasn’t buying it. He fought it the entire time to the point that it took me and two nurses to keep him still enough to get a test tube worth of blood from him. The entire time Liam has been in treatment, I have managed to avoid having to go through a finger stick. Most kids have blood drawn that way – not through one of the tubes in the line – but I have always just known that it was going to be something that Liam would not do well with…at all. And I was right. Blood taken directly from a finger gives a more accurate reading then blood taken from a line. And when you’re about to begin 3F8 treatment, the reading of the blood needs to be as accurate as possible. But boy…it really wasn’t a pretty sight. So, the nerves were shot right out of the box and it wasn’t even 8 a.m.

The typical Monday traffic jam at the Day Hospital was in full force and we actually didn’t get the infusion started until 1 p.m. (And why did we need to arrive at 7:30 a.m.?) We finally got started by first pre-medicating Liam with some anti-nausea/hives medication (one of the side effects of 3F8 is hives) and a dose of narcotics. And then it was time to start the 3F8s. We had a team of people in the small room – a nurse practioner who deals only with children receiving 3F8s, a nurse, and someone from dance therapy who has worked on a protocol for helping children cope while receiving 3F8s. The room is a small rectangle - about the width of two single hospital beds. There’s a curtain for a door, a wall of windows on one side, a smoked glass wall on the other, and no ceiling. They’re nice but not very private. Liam had fallen asleep from the pre-medications and we waited and hoped he might somehow miraculously sleep through the entire event. Exactly ten minutes into the 30 minute infusion he woke up and kept telling us, “I’m not comfy. I’m not comfy.” And then he wanted to be held – chest to my chest – in a fetal position and then kept trying to find a comfortable position. But he couldn’t. He didn’t cry. Didn’t scream. Didn’t ask what was happening. He just kept telling us he wasn’t comfy. And then the real pain started and his little body would become straight and rigid as the pain centered on his stomach area. And as I was holding his head in my hand to prevent it from falling back, I could see him trying to deal with the pain. The nurses watched his heart rate and timed the amount of time between rescue doses in order to know when to give him another. I rocked him, Daddy rubbed hot packs on his body, I sang a chant to him over and over again of “Almost Done…Almost Done…Almost Done…Almost Done.” And eventually when I couldn’t sing any more because I had too many tears in my voice, I hummed “Rain Rain, Go Away.” Eventually he fell asleep. And as soon as he fell asleep, the team of people with us moved on to the next child. As he slept, we had to keep an eye on his oxygen saturation levels and heart rate. When they dipped below the target number, we’d have to wake him up and tell him to take deep breaths. He kept whimpering as he slept and we could see his heart rate going up when he was having another wave of pain. When he finally woke up, he threw up. And then he threw up again. And again. And again.



Right before we were about to leave the hospital, he had a temperature of 38…which equals a high temperature in the land of cancer. But his temp in the other ear was still normal. We waited 15 minutes. It went away. We left. After an hour at home, Liam’s temperature was back and not going away. So back we went to the hospital to the emergency room for a dose of antibiotics, have blood cultures drawn, receive another does of pain medication since he wouldn’t take any orally at home, and some anti-nausea medication. So, day one was a 15 hour day with a long night of Liam wanting to do nothing but be held.



What surprised us was how much pain he continued to have in the evenings. We thought it was 30 minutes of pain and then back to normal. The closer we got to the first day of 3F8s, the more we started to hear talk about the residual pain. Wait – what residual pain? And when we actually embarked on the 3F8 freefall, we found out that it was more involved.



Days 2 – 5 were equally as difficult but at least without a trip to the ER. We still had to give him an injection of GMCSF – the medicine that increases production of “killer” white blood cells – every morning which was definitely not highlight of our day. The difference was we figured out the right amount of pain medication to give him to relieve his pain but not make him so sleepy that he had lingering narcotic effects. By day three, he was finally saying, “This hurts. It really, really hurts.” But he never screamed and never cried, just kept telling us he wasn’t comfy. And every morning just as he was feeling himself, we’d have to bring him back to the hospital for another round. But if it gives us our son for the next 80+ years, we can deal with it. He doesn’t remember a thing. It’s us who will never erase the sounds of the screams from our memory. Here’s proof that Liam doesn’t remember the pain. On Wednesday morning, we arrived at the hospital and Liam was waiting for the day to begin. He was sitting on the bed, swinging his legs off the side, and singing, “Oh Mr. Sun, Sun, Mr. Mr. Sun, Please Shine Down on Me.” In his sweet, innocent voice he kept singing his version of the song, with two Misters in the middle, over and over. And on Thursday morning, Liam was standing in a group with three older boys all in various stages of treatment being entertained by his favorite clowns. As all the boys jumped in excitement watching the clowns, who by now are old friends, I had a hard time reconciling how something is trying to take away these sweet, precious children when all they want to do is live, love and laugh.



One of the nurse practioners gave me an explanation of 3F8 that was simple enough for my brain to understand. The beginning of Liam’s treatment was similar to cleaning a car. When you first clean the inside of a car, you use the big industrial vacuum that can get out almost anything. Our big vacuum was chemo and surgery. Now we’re onto the detail part. We can’t see any more cancer cells, but we know they’re there. So, we’re using the precision tools – radiation and 3F8s. 3F8s go into Liam’s system…search for cancer cells….find them…and put a Post-it on them. The GMCSF injections stimulate production of the killer white blood cells so there are more of them to search for the Post-its and then do their job. One of the interesting things is that the Post-its never go away. The cancer cells are always marked so eventually, as the theory goes, they’ll be found and destroyed. And eventually Liam’s body, through 3F8 treatment, will learn how to recognize the cancer cells and kill them. 3F8s have been around for 21 years. For 21 years the team at Sloan has been tweaking the dosage in an effort to perfect it. It’s what’s called a Phase II clinical trial. How can something still be in a clinical trial phase if it’s in its 21st year? In order to take it to Phase III, it would mean needing to randomize it…some patients would receive it and some wouldn’t. That’s a proposition that the doctors at Sloan don’t want to make. Can you imagine if your child was one who wasn’t receiving the 3F8? Can you imagine having to make the decision of who would and who wouldn’t receive it?



Earlier in the week, Liam wanted to visit Reece, one of his favorite nurses who works in the Pediatric ICU at Sloan. We walked into the three-bed unit excited to see Reece. Instead, I was once again reminded that a lot of kids don’t make it. A family who doesn’t live in the area was visiting Sloan to thank them for their efforts in trying to save their son. Liam ran to Reece, and I tried to avoid looking at the family. I couldn’t look at them. I couldn’t see the pain in their faces. It hurt too much. But my peripheral vision wouldn’t keep my blinders on. I could hear the mom crying and see her showing off a t-shirt emblazoned with her son’s birth and death date and a smiling picture of him. Remind me again why cancer research funds have been flat the last three years for childrens cancer? Is it because we think that this mother could handle the pain of losing her son? Later in the day, Reece stopped in to see how Liam dealt with his first day of 3F8 treatment. I asked her about the family. She knew why I was asking. She immediately said, “Gretchen – He didn’t have your kind of cancer and he wasn’t treated here first. He came from somewhere else.” That’s the thing about Sloan…a lot of patients come from somewhere else. And when they come from somewhere else, it’s not always so good. We still have a long way to go. We’re still not out of the woods. We’re still running an ultra marathon. We have to get him through the next 24 months before we can cut back to half marathons…but we’ll never be able to stop running.