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.

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 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 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.

"I'm not comfy"

Day 2 down. 3 to go . 3F8s is tough and not quite the way it was described. In some ways, it's better. In others, it is much, much, much worse. It's definitely long days - 11 hours on Monday not including a four hour trip to the ER in the evening and nine hours today. One thing it is is all consuming and very difficult to watch. We'll give more details when our heads pop up above water, but for now we're doing everything we can to help our Prince. All he says to us as he endures the pain is, "I'm not comfy." He doesn't cry. He doesn't yell. He just whimpers and tells us over and over that he's not comfy. He won't take any pain medication when we're at home which makes the evenings difficult. The biggest differential between our perception of 3F8 and reality is that the pain lasts all day and all night. Yes, the super intense pain doesn't last more than 30 minutes but the pain doesn't go away afer that 30 minutes which is what I thought. The side effects from the heavy doses of narcotics (he's on something that is 3xs more powerful than morphine) makes him very unsteady on his feet and extremely restless at night. But even through pain and drug haze, his personality comes through. Tonight he ate something. (Monday - he ate nothing.) And as he was being served Smilers (silver dollar sized happy faces of mashed potatoes), he looked up and said, "Mmmm - They're perfect. Just perfect."

Driving Miss Ella

The Calm Before the Pain

Sunday Night, June 24th



So here we are. On the eve of the beginning of the next phase of treatment. We have to be at the hospital at 7:30 a.m. to start our first day of 3F8 treatment. Last Tuesday’s meeting with Dr. Kushner effectively closed the first book in our trilogy. The initial treatment - five rounds of chemo and surgery - is called induction. I’ve often wondered if we’re being inducted into some Cancer Club that we forgot we filled out an application to join. Wait – this isn’t the club I was hoping to get in….I was looking for the Average Family Club. The second book in our journey will primarily be 3F8 treatment, with a sidebar story on radiation and another on the likely surgery to deal with the scar tissue on Prince Liam’s ureter.



3F8s have been the carrot at the end of the chemo and surgery stick that we’ve been working towards since February 28th. It’s been the thing I’ve been eager to get Liam to in terms of his treatment, but it’s also the thing I’ve been dreading. Listening to children enduring the pain associated with 3F8 is how I came up with the description of Little Shop of Horrors for the Day Hospital. The screams are so painful to hear that many days it would make me cry. Whenever Liam would ask me why a child was screaming, I’d give him a myriad of excuses…usually that the child has a stinky diaper and doesn’t want to get it changed. (Ever since an extremely painful bout of diaper rash after round 1 of chemo, Liam has been reticent to have his diaper changed.) Now all of the sudden we’re very likely going to be one of those children doing the screaming. How in the world am I going to explain this one to Liam the Brave and Inquisitive? I haven’t come up with an explanation for pain so intense that even a pain medication three-times as potent at morphine can’t alleviate. It’s hard to stay focused and in the moment with this looming ahead.



The transition from Book I to II has been jarring and abrupt. There was no climax at the end of Book I. The close to book I, our meeting with Dr. Kushner, was very matter-of-fact, all while trying to entertain Liam in the non-kid-friendly office/exam room we were in. It wasn’t a “Hey – This is great – You guys made it through five rounds of chemo and a 10+ hour surgery and dodged all the pitfalls – Congratulations!” Don’t get me wrong – it was a positive meeting but there were no champagne corks being popped and bubbly poured. Now, of course, in the whole scheme of things we’ve cleared a lot of hurdles…some heavy-duty major hurdles…but we still have hurdles in front of us to clear. The main one being time. One of the most difficult things about our meeting with Dr. Kushner was trying to entertain Liam. Our Prince was eager to be out and about and exploring…not in an office/exam room. After playing with everything that had a button, trying to remove the thumbtacks from the cork board, and looking for anything he could do to amuse himself…he discovered the excitement of an examination stool with wheels. The next thing we knew, Liam was pushing the stool and running up and down the hallway outside the room we were meeting. Back and forth Liam went past the room. Here we were talking about his life when all he wanted to do was enjoy one of life’s simple pleasures.



And then the meeting was over. And Larry went to work. And I stayed at the hospital with Liam for a dose of antibiotics. From the hospital, I took Liam with me to a hotel to set up for a two-day work event. And that was it. That was the end of chemo. I can throw away the rolls of paper towel and containers to catch throw up that are in every room. I can throw away the chemo diapers that don’t hold anything except a drop of urine. I can get rid of the butt paste. The layers of waterproof sheets on his bed can go. The rubber gloves to protect us mere mortals from chemo-laced urine in Liam’s diapers can take a backseat to cars and trucks. And the bottle after bottle of medicine to treat side effects of chemo can all go. And Nystatin, the medicine that prevents mouth sores that happen during chemo is also not needed any more. But even though I know they all can go, I haven’t done it yet. Maybe it’s the fear of the unknown that has prevented me. And it’s hard to comprehend what this new phase of treatment will look like. I finally just a handle on chemo, now I need to learn a whole new way of life.



On the eve of a new phase of our journey I’m scared and sad thinking about the pain Liam will endure. I would do anything to go through the pain instead of him. I would do anything to relieve his discomfort….anything. As numb as I sometimes feel about what’s going on, Liam continues to be such an inquisitive, perceptive little boy. We’ve had to do several of the last dressing changes. They’re still not pleasant, but they’re not the screaming fits they used to be. And at the end of every one as Larry is literally drenched with sweat from stress, Liam says…unsolicited, “Thank You Daddy. Thank you Daddy.” We don’t know why he says it. He just does. But that’s Liam. He’s always more concerned about others. And today when I was driving in the car with Liam to pick up his new food fad, tater tots, he was singing “Oh Where Oh Where Has My Little Dog Gone” in his sweet voice just as happy as could be. He’s back to making up words to songs. He’s back to joking around. He’s still very skinny and eating isn’t something that comes easily, but he’s eating. His little face is still my sweet, adorable little boy’s face even without eyebrows, eyelashes or hair. But I do miss seeing his long, luxurious eyelashes.