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Wednesday, August 27, 2008

Please pass the Throw Up Bucket

9:45 p.m. Tuesday, 8/26 Update

Liam just finished throwing up for the third time in an hour. Chemo throw up for Liam is a total body experience…it sounds like his toes are throwing up and every vertebrae in his back. It comes out his nose. He makes an awful wretching sound. He spits frantically to clear the throw up from his mouth while whimpering “there’s more – don’t move the bucket!” And over and over he says, “I don’t like throwing up. I don’t like it at all.” But tonight, after his third throw up session and before I had even wiped away the combo of spit, he raised his head from the throw up bucket and said in a cautiously excited voice, “Mommy – One plus one is two! And two plus two is four!” And as soon as I had him cleaned up, he curled into me and started picking out the letters he recognized on the front page of the newspaper. “Mommy – There’s my letter – and L. And that letter is for dog it’s a, a, a, D! And that’s my other letter…a W. Over there is a snake letter. What’s it’s name again?” The effects of the anti-nausea pill are finally setting in and he’s asleep covered in a Batman blanket that arrived yesterday and surrounded by little puppy, big puppy, monkey puppy, duck puppy, super soft yellow blankie and pilly the pillow which has the ever-present magic rock attached to it and a new addition, a lucky stone passed along from Aunt Franny’s son Ben. The lucky stone has a picture of deer painted on it and Liam insisted on having it reside with the magic stone.

Today was the second of two very long hospital days. We arrived at 8 and left around 4:30. We painted, weaved a complex spider web using colored plastic string across his door, booby trapped several of the cabinet doors in his day hospital room, constructed a gate using elastic string and insisted on each visitor announcing their intent before coming into his room, worked on identifying letters, visited John who is in room 26 in the day hospital this week, read his anatomy book again and again, learned how to take a pulse and took Dr. Kushner’s, asked Dr. Kushner (which is still pronounced, “Dr. Kush-shen-ner”) to explain how oxygen gets into blood by using the diagram of a heart and lungs in his anatomy book, gave Dr. Kushner an unexpected hug when he was leaving and again admonished him for not being around recently, learned where clavicle bones are located, walked with Ester to her office so that we could watch for signs of limping, played his Leapster game and was focused by how much Wall-e could recycle, drank a few sips, ate nothing, peed a lot in the cup which is always thrilling (Holy Mackerel Mommy – Look at how much Pee Pee is in there!), played with three squishy rubber balls with hair-like strings that can be squeezed, looked for places in his body where he could see his veins, read “There’s a Map in my Lap” and discussed all the different kinds of maps there are and what kind he’d like to have (one with “his” beach house on it), wanted to know how an umbilical cord works and how it fed him when he was a baby in my tummy, recited how the digestive system works from taking a bite to it becoming a stinky, moaned about the long day in the hospital, asked more times than I could count when we were going to get out, watched Curious George, didn’t take a nap, and kept a watchful eye on the Pooh balloon that was accidentally released on the second day of the 1st cycle of chemo that is still out of reach but not out of sight. The minute the first two stroller wheels crossed the threshold out of the hospital front doors and onto the busy York Avenue sidewalk, Liam fell fast asleep and was sleeping so hard he didn’t even wake up when I lifted him and the backpack containing a pump and fluids for the night from the stroller and gently placed him in the cab for the ride home. John’s mom, who happened to be outside, stuffed the trunk of the cab with all the “stuff” that goes along with Liam to the hospital and closed the cab door.

Tomorrow and Thursday should be much shorter days. It’s a good thing. We’re not conditioned for super-long hospital days and are still recovering from our eight-day hospital stay with another hospital stay on the horizon. But the long days are now chalked off the check list of things that need to happen in order to get him back to where he so very much wants to be…school. Tonight will probably be a long night but tomorrow…tomorrow is a brand new day and one step closer to being back on track.

P.S. Yesterday we sent an emissary to the inpatient side to deliver a note to Victoria. It included a reminder to get up and walk…one foot in front of the other…and a stick figure drawing of Liam with his big, silly smile. We’re not allowed on the inpatient side, just like when we’re inpatient we’re not allowed on the day hospital side. When our emissary returned from his mission, I couldn’t tell who was more touched…him for having learned about Victoria and seeing the huge smile the note from Liam brought to her face, or me for hearing how Victoria smiled.

Monday, August 25, 2008

It’s all just so ludicrous

Monday, August 25, 12:35 p.m.
We’re back at it. We’re five hours into day one of the second round of chemo which we hope is our last round of high-dose chemo. (I think he can’t receive any more after this….but it’s a question I don’t ask.) We’ll be here every day this week with Monday and Tuesday being the super long days. And after the round finishes on Thursday, we’ll be back on Friday for blood counts. We anticipate being back in patient some time next week until his body’s bone marrow recovers enough from the assault of toxic chemicals and starts making white blood cells.

Liam had a CT scan last Tuesday which looked fine. It was his eighth CT scan and his third without anesthesia. He was a seasoned pro…unfortunately. Full of questions about how it takes pictures (we’ve actually watched videos on YouTube of how a CT machine works, much to Liam’s fascination), impatience that we had to wait for almost two hours, and questions about why Dr. Kushner wanted to see pictures of his inside body. It was done to have a new post-op base line and apparently was just fine. What I’m leaving out is the struggle to get Liam to drink out ounces of apple juice spiked with the contrast fluid needed to be ingested before a CT scan but not too much before. He really despises the whole having to drink contrast activity and takes the tiniest of sips and pretends to gag on each one. Those eight ounces take more than an hour of constant badgering to get down…tiny sip after tiny sip…all while keeping a close eye on my watch to make sure it gets down by the deadline. The process starts out as a negotiation and then as the deadline approaches, shifts to more of a dictatorship. And then once we arrive at the hospital, we have to deal with the whole nervous energy leading up to having his port accessed. “Mommy, why do we have to do it?” “Do we really have to do it?” “But Mommy, it’s going to hurt!” And then when it actually comes time to plunge the one-inch needle through his skin to go into the port, I find myself levitating over my body watching the scene from above because it just so goes against the laws of being a child…or a parent. How many times have I had to restrain my sweet son while he either gets a finger prick, injection, dressing change, or some other things that just shouldn’t be happening all in the name of giving him life? But, as always, what gives me strength is Liam. Two minutes after the accessing process, he’s fine…ready to play. He still loves me. He doesn’t get angry with me or hold anything against me. He’s still my sweet son who has had to endure yet another personal invasion. As hard as the accessing process is, the deaccessing is just as awful. He hates having the sticky bandages removed from his sensitive skin. He insists that I do it, one handed, using lots of adhesive remover pads, without pulling, while he sits in my lap. And then after the bandages are removed, he braces himself and I restrain his waving arms and kicking legs so that the nurse can pull the 1-inch needle out from his chest. It’s not so much that it hurts, I think it’s more of another assault on his body and personal space he’s objecting.

He’s back up to his pre-surgery weight – 18.4 kilos – courtesy of PediaSure chocolate milk and homemade Belgium waffles made with tons of butter and whole milk. (He can eat two Belgium waffles in a sitting.) We finally got him to branch out and try a different food – chicken nuggets – which he devoured six of in one sitting which, for him, is a record. We know these victories are short lived since his appetite will be wiped away beginning today for the next three weeks. Right now he’s eating Smart Puff Cheese Puffs one after the other. He has almost consumed an entire bag which will equal 585 precious calories. And he’s had ¾ of a Belgium waffle (I brought frozen ones to the hospital with the hope he’d eat) and three PediaSure drinks (at 237 calories each). I remember the days I used to count calories for an entirely different reason. We’ve already had a conversation with Dr. Kushner, whom Liam admonished for not being around lately, about getting an X-Ray on Liam’s right knee later this week. He fell last weekend on his right knee and has been limping since…although not letting it slow him down…but because it’s the right side of his body where his original tumor was located, and because he had disease on his femur in that leg (although not in his bone marrow), and because it’s neuroblastoma which doesn’t like to give up, and because chemo can cause bone weakening…we’ll have to check it out. You know what I despise about this disease? For the rest of Liam’s life, a bump can never just be a bump…it will always need to be assumed it’s something bad. In this world you assume for the worst and hope for the best. When you see Liam and see how “normal” he looks and acts, it’s hard to reconcile in your mind that his health relies so much on the skill of the countless medical personnel. And wait, could someone please wake me up from this dream of having a child who has already been a part of two clinical trials and is going on his third?! Clinical trials? My child? You have got to be kidding me. There is just no way.

We’ve been a little slow on updates on Liam. The extra time we normally have in our schedule has been taken up with working on the Cookies for Kids’ Cancer website. It has been a very tedious, slow-going process but it’s going and it is gorgeous. The whole thing, though, like the rest of my life, has been fairly ludicrous when you look at what we’re juggling to get it all done. Writing copy while sitting next to Liam in a hospital bed, weighing in on a look of a page while waiting to be called into a CT room, staying up until 3 a.m. with my husband to get copy where it needs to be. I’m not sure if my birthday wish came true, I don’t know if we have 100 people who have committed to holding a bake sale, but it’s almost immaterial in light of the incredibly powerful e-mails we received from many friends but even more people who we don’t know but have been following our story. What is it about someone’s character to reach out to someone they don’t know and make a commitment to get involved? And one very, very special person already had her own bake sale in her office last week to win the title of early bird bake “sale-r.” She raised $100 in her office bake sale and then through her work received a matching donation to double the amount of money she raised. Our early-birder is not a long-time friend or family member, but someone who heard about us from someone else and decided to get involved.

One thing I haven’t been able to write about yet because it’s still too raw is one very special teenager we met while Liam was in patient. Victoria was diagnosed only a few days before Liam was admitted during his last stay. She went from being a healthy, trophy-winning softball player with the world ahead of her to a stage IV cancer patient lying flat on her back with no warning. For the week that we were in patient, we would see her father walking the halls. It wasn’t until the sixth day that we finally met him and he told us about his daughter. She had slid into second base during a softball game and it bothered her knee, but not enough to cause alarm. They left for vacation the next week. The pain got worse. They went to an ER to get it checked out. The ER doctor thought he saw something but couldn’t tell what and suggested the family see an orthopedic doctor. They cut their vacation short and made an appointment with an orthopedic doctor. He ordered a CT scan and told them she needed to see an oncologist immediately. They made an appointment and she was almost immediately in surgery to remove cancer from several areas of her body including along her back. Her father invited me to visit her and give her a pep talk and I immediately said yes. What I didn’t realize is that she was in room 10A, the very room Liam and I first occupied when we were brought to Memorial Sloan-Kettering via ambulance on Tuesday evening, February 27, 2007. I haven’t been in that room since and actually avoid going near it. Victoria is a beautiful girl with long, curly dark hair and soft, brown eyes. She was lying in completely flat in bed. I went over to her side, held her hands tight and told her about Liam and how we have never, ever, ever thought anything other than Liam will be fine and she too will be fine. I told her that these early days are the absolute worse. I told her that she’s a competitor and she knows what it means to be up against a tough team and how to win and that she can win. I told her to stay focused. I told her I love her and will be here for her and her family.

The next day Liam visited her with his candy cart and bestowed her with lots of candy from his candy store while literally bouncing around her room like Tigger. She smiled. He told her he loved her. And again I was reminded why we’re doing Cookies for Kids’ Cancer out of sheer determination and conviction. We simply have to.

Tuesday, August 19, 2008

My Birthday Wish

Wednesday, August 20th is my birthday. I have two very special birthday wishes. I’m sure everyone knows one of those wishes since it’s the same wish we all have for sweet Liam. The other wish came to me today as I was restraining a kicking, screaming, crying, thrashing Liam who was trying to avoid getting a finger stick to check his blood counts. (They were, by the way, very good and we might be starting the second and hopefully final round of chemo on Wednesday.) My birthday wish is to hear from 100 people by Wednesday who are committed to holding a bake sale in support of pediatric cancer research. I can’t think of anything I want more than to know that everyone who has been following our story wants to get involved. And I think it’s a reasonable wish. If every person who reads about Liam e-mailed us to tell us they want to hold a bake sale, we would easily surpass that number. If each of those people convinced two of their friends to join the cause and hold their own bake sale, then we’d really be getting into some impressive numbers. If we can sell 96,000 cookies in a few weeks, why couldn’t we hear from 100 people who want to hold a bake sale? And the bigger those numbers are, the more we can fight back against pediatric cancer. I hope my birthday wish comes true. I need my birthday wish to come true.


Friday, August 15, 2008

We're Out!!

We drew some blood for a CBC around 9:30 last night to check if anything had changed from the morning.
Number needed to be released: .5
Tuesday's ANC: 0
Wednesday's ANC: .1
Thursday's ANC: .2
Thursday Evening ANC: 2.62
Result: We are out of
Daddy came to help us home. Liam was thrilled and immediately sucked down 8 ounces of chocolate milk in excitement. And we rejoiced to be back together.
A cab was immediately available and by the time the door was shut, Liam was asleep.
It is good to be home.

Thursday, August 14, 2008

Some Pictures

A rainbow

A rare nap

Liam and his roommate John

Thursday, August 14 (I think)

A Long Week but Expected…that’s Turning into Two Very Long Weeks

Note: This entry is a little disjointed because I’ve been writing it in fits and spurts since we were admitted last Thursday. As of this morning, Liam’s ANC blood count was .2. Yesterday it was .1. The day before it was 0 and it was 0 for the eight preceding days. It needs to be .5 in order to be released. To hear that it has gone up such a small amount was tough. I’m running out of crafting projects, enthusiasm and creativity…but never out of love for my son. He’s also bored and completely over being here. According to the team, this is par for the course…but it doesn’t make being cooped up in a sterile environment with a child who thrives on being outdoors any easier. I’m threatening a dishonorable hospital discharge today and just leave. I’ve run out of clothes to wear and things to do. But too bad. It is what it is and I just need to deal with it. OK – enough whining. I’m off to assemble a scavenger hunt for him around the pediatric floor.

We’ve been in the hospital since Thursday. Last night was our seventh night of sleeping on what feels like a partially inflated air mattress that makes a loud noise every few minutes as it shudders and shakes to redistribute air in an effort to prevent bed sores. Liam doesn’t like the squishy, constantly adjusting mattress at all. Every time it starts its shaking mode, reminiscent of a cheap motel room bed that has a place to slip a quarter to engage the “comfort bed” mode, Liam goes into his “Oh No Mommy – The Bed is Moving Again!” tirade. And of course there’s the uncomfortableness of sharing a cramped room with another family going through a rough time and trying not to hear what’s happening. Our first roommate, John, was awesome. A vibrant 12 year old, John was recovering from a complicated surgery on his leg. He has a different kind of cancer than Liam which only serves as a reminder of how many children need us to make Cookies for Kids’ Cancer work. Kids like John, Baby Golden, Evan, Adina, Victoria and Seth who all deserve everyone to do their best to find better treatment options and cures. John is much older than his dozen years. When he heard Liam having a hard time taking a pillow (aka pill), John called to Liam through the curtain dividing the room to tell him he would give him candy if he took his pill. John’s mom, an incredibly beautiful and stylish woman with a heavy Turkish accent, cooed and comforted Liam every chance she could and immediately made me feel like we were comrades in different battles but the same fight. She told me how she made her son shave his head when his hair started to fall out. She wanted her son to continue to be beautiful and in her mind, patchy hair wouldn’t be right for her boy. Speaking of hair, Liam’s has started falling out which is as difficult for me to deal with as I thought it would be. We got a buzz haircut for him a week ago. It is really short and just like daddy’s hair cut. We wanted to get ahead of the pending falling hair instead of him having longer hair which looks just plain bizarre when it’s falling out in chunks. But now he looks like he buzzed his own head and took chunks out all over his scalp. His hair has patches missing from all over and actually, as I look at it, there are only patches of hair left. I’m considering delaying having him start school because I refuse to put him in a situation where he feels different or becomes self-conscious. He’ll have plenty of time to deal with those two feelings…I just don’t want to expose him to that potential hurt at the tender age of four. It would break my heart even more than the million times it has been broken if Liam told me that someone made fun of him or made him feel uncomfortable for having no hair. And I suppose I’m even more sensitive since Liam was a puddle of tears when the morning after his hair cut he saw his reflection and started crying because he hated how it looked and told me between sobs that it would never grow back. And as I held him in the bathroom clutching him close to me and telling him it was going to be OK, that his hair really would grow back, I kept thinking it was only a dress rehearsal of what’s about to come when all of his hair is gone. Of course I’ll think of a way to position the hair loss so that it’s not a big deal and acceptable to him, but right now I haven’t figured out what that message is going to be.

We found out on Monday, August 4th, that he was at 0 white blood cells and no absolute neutrophils (ANC). It was a bit of a surprise since we weren’t anticipating him to bottom out until Wednesday, but then again nothing surprises me any more when it comes to this disease. So what we thought was going to be a quick trip to the hospital for a check on blood counts turned out to be an eight hour journey to receive a blood transfusion. Blood transfusions are not quick things…you need to do a type and cross to make sure the blood being received is compatible with Liam’s blood; there’s the pre-medication to prevent any potential reactions which takes an hour; and then you have to wait for the blood which always seems to take too long. When it finally arrives you peek to see if it’s a direct-to-donor, meaning someone donated it specifically for Liam, or if it’s from one of the thousands of volunteers who donate blood to anyone who needs it year round. When Liam’s bag of blood arrived, the first thing I noticed was the pink tag indicating it was direct-to-donor donation. (Thank you donor!) When we finally got home on Monday night, Liam’s response to Daddy and Ella was to tell them, “What a long day! We were there forever!”

The rest of the week was a whirlwind between working, checking his temperature every hour, visits to the hospital, urging Liam to keep drinking (after Monday, eating was out), and hoping to avoid or delay a fever as long as possible. But by Thursday morning, when Liam couldn’t even open his eyes, barely move and wanted to be in a dark and quiet room with his head covered, we knew it was probably the day that we would be admitted. Even a quick visit from his firemen friends who happened to be in the neighborhood couldn’t perk him up. He gave them a big smile, but insisted that they come to see him while he was lying in bed instead of his usual bounding-with-excitement greeting. After a flurry of e-mails with Ester, one of nurse practitioners on the neuroblastoma team who serves as much as a grandmother to Liam as a rock for me, his temperature went from 99 to over 102 in a matter of minutes and we were off to the hospital. The only thing Liam could say was, “I feel lousy…really lousy.” And as I scooped him up in my arms to carry him and his mass of accoutrements of toys and treasures for what could be an extended stay at Hotel Memorial Sloan-Kettering, I immediately noticed how alarmingly light he felt in my arms

The story of Thursday was resistance as he completely refused to drink anything and we had to get Tylenol in him to get his temperature, which was continuing to rise, under control. After more than an hour of negotiation where Liam shut his mouth and said no in the most pitiful sounding voice I’ve heard uttered, Ester and I had to get tough and force liquid Tylenol down his throat…an awful, awful experience where you feel like you’re treating your child more like an animal than a person…which he immediately threw up. It’s not that our pill-popping son was trying to be difficult, but he associates drinking and eating with throwing up which, in his mind, would make him feel even more awful. After the unpleasantness of forcing his mouth open and shoving a syringe filled with Tylenol into his throat, he opted to try to take the pill. And he did. Very reluctantly, while consuming as little liquid as possible and then went back to sleep but not before asking me to rub his feet and not stop…even when he fell asleep and reminding me to take my shoes off before I got into bed.

Our time at the hospital has been a mindless, timeless waiting game trying to keep Curious George engaged, entertained, occupied, away from germs and out of too much trouble. He hasn’t had a fever in more than six days but because he still has no ANCs, a specific type of white blood cell that is critical to fight bacteria and germs, we have to stay here. And beginning Friday morning, he was ready to go. It has been wind sprints around the pediatric floor, games of hide and go seek, hours and hours and hours in the playroom trying to make the same assortment of toys we saw during the last play date of interest again, and craft projects galore. And then there have been the negotiations…he started taking pills again Friday afternoon (thank goodness) and gradually starting drinking beginning Saturday. On Sunday he ate, finally. Two pieces of jelly toast, three bananas, one Starburst and one M&M.

Since he has arrived, he has been visited by Fireman Tommy (who cuddled with Liam in his bed); received ten shots, two platelet transfusions and one red blood cell transfusion; countless doses of antibiotics to ward off infections; received a visit from Deanna and Dan from M&Ms whom we have never met but have been following Liam’s story and drove three hours on Saturday to donate blood and platelets and drop off 10 cases of M&Ms, Starbursts, Skittles Gum and some very special M&Ms with Liam’s picture and the phrases Prince Liam, The Brave, The Amazing (we love them!); lost another kilo of weight which makes a total of 4.4 pounds lost in the past month; set up a candy store in his room and gives every person who enters candy but doesn’t ask for any money just a smile; makes daily candy runs pulling the red wagon he lived in during his initial hospital stay to distribute candy to every person he meets; ran down a hallway clutching a pack of Starbursts to chase down a resident who had the nerve to not stop and get some candy from him; made a robot with an empty box of M&Ms (the padded inner liner makes a perfect robot body and the box is decorated with Styrofoam cups, glitter, construction paper, pipe cleaners, colored popsicle sticks, a few butterflies, colored straws, plastic bowls and a foam chipmunk); watched ET; remembered what magic hair is but this time decided to help the process by taking a lint roller to his head to collect as much hair as possible (he shared his discovery with Adina, a teenager down the hall who is in isolation who Liam visits every day by kneeling in front of the bottom window in front of her door to wave hi and talk to her; has had to collect his urine in a special urinal since he has been in here which he LOVES because it gives him the perfect excuse to not have to go to the bathroom (Setting: Playroom. “Mommy – I have to go pee pee.” “Liam – Let’s go back to the room to go in the cup.” “No Mommy – I’m busy – bring the cup here and I’ll go while I’m playing.”); made a wind chime out of paper cups which is hung from his IV pole; made a huge vat of slime with liquid starch, water and glue and purple paint: donated most of his candy to the volunteer who comes every Friday night to Memorial Sloan-Kettering to give candy to all of the kids who are in patient (aka – sleeping here); made countless visits to see Baby Golden and Golden’s Mommy whom I think he has a crush on; made new friends who he has since seen leave; experimented making waterfalls with all kinds of containers in the bathroom sink; has had his blood pressure, temperature and pulse oxygen levels taken around the clock every day and is so used to it that he doesn’t even wake up at night when the blood pressure cuff squeezes his arm; did a face plant onto the floor when he was running at top speed (good thing he had a platelet transfusion that day); had his hands and arms painted by Juliette the face painter with a blue flower, white duck with orange bill, spider web and snake; has told me time and time and time again how much he loves me; and has been bright and upbeat since being here even though he “hates being here!”; had a private magician showing on Tuesday night with Aunt Kate while Mommy got to take her second shower in the bathroom with no place to put anything; played countless games of Don’t Spill the Beans, Animal Bingo and his own version of Diego checkers; enchanted a beautiful, young volunteer who recently graduated from Princeton with the sole intention of being a cancer researcher so much that she came back the next night just to play with him; practiced tracing his name over and over and over to the point that he’s really good (a small victory!); discovered that if you put bingo chips in a play farm silo, it makes an excellent chip holder; blew me away by correctly answering 300 questions in a series of flash cards designed for 4-year olds; squealed with delight when he remembered how to touch the roof of his mouth with his tongue to practice the “L” sound (something he learned in his first and since only speech therapy lesson five weeks ago); and has played with his prized crane for hours and hours.

Liam”isms” to share:
- “Mommy, Mommy, I have a question for you.” Primarily used as a great stall tactic to avoid getting a shot or having to take a pill.

- “That’s what I’m talking about!” Used in many different scenarios from drinking a huge gulp of chocolate milk to explaining how something should be done.
- “You’re not going to leave me ever, right? Right Mommy? Because we’re a team.” Said after he heard almost four-year-old Evan kissing and saying good bye to his daddy who left the hospital for a night off so that Grandma could spend the night and Daddy could get a break.

- “Oh, that’s Courtney, that’s the nurse I love.” Casual remark after seeing Courtney for the first time in more than a year.

- “To get out of here, we have to drink, eat and grow white blood cells. OK Mommy – Let’s do cheers and drink. “ Liam clinks cups with me before every sip of drink.

I try to keep things focused on Liam, but the reality of life in the hospital is tough. You hear alarming alarms going off all day, witness families in huddled and hushed conversations, see kids who look like they’ve had the life sucked out of them, hear bits and pieces of medical conversations with teams of doctors that just don’t sound good, and see moms and dads looking worried. But I try to maintain a steady cadence of “everything’s fine” around Liam.

But, because it’s not my nature to be negative…I’ll end with a positive story. Two nights ago Liam’s friend Bob came to visit. Bob and his wife Lee have been near and dear friends for close to 15 years. Lee is one of the most incredible people in the world…and a person who from the minute I met in a kitchen in Richmond, Virginia, had an instant bond. She’s the kind of friend you can always pick right up with even if you haven’t spoken in months. On the day Liam was diagnosed and our world was turned upside down, Lee and Bob were introducing their book, “In an Instant,” to the world about the journey they had been on since Bob was injured in Iraq. The first day Liam was at Memorial Sloan-Kettering and we were trying to figure out the damage of the bomb that just hit our world, Lee presented Liam with a special stone that was given to her by a friend to help Bob recover. The rock, which has special healing powers, rested underneath Bob’s pillow while he was in a coma and stayed near him throughout his recovery. Liam has kept Bob’s special rock in a small satchel attached to his pillow that goes everywhere with him and has cradled Liam’s head every night. When Liam gets anxious about something, it’s the special rock that he rubs for comfort. The rock has been to the operating room three times, countless MIBG and CT scans, every round of radiation and antibody treatment. Liam loves rainbows. They give him great joy to watch and make him literally dance with excitement. On the night Bob came to visit, “Aunt” Kate was on her way to the hospital to bring me some relief and Liam a prism we had ordered for him to teach him about rainbows. As Bob was watching Liam play, he looked out the window of the hospital room and saw a giant rainbow. It was huge and crisp and clear and right there…so close you could reach out and touch it. Bob called to Liam to come see the rainbow, Liam looked at it and said in his sweet, animated, squeaky voice, “OH WOW! That’s Cool! I LOVE rainbows! I love the colors. They’re sooooo pretty.” And Bob looked at me and said, “It’s a sign. You know it’s a sign.” Yes, I know. Liam will be fine. We all know he’ll be fine.

Sunday, August 10, 2008

Maybe a jaded view?

Most posts you see on our blog are from Gretchen and on the rare occasion that I feel like letting my feelings free you see one from me. Well it looks like today might be one of those days though am not so sure it is a good thing. I guess I am week from lack of sleep as I often resist the urge to write and appear vulnerable (guy defense mechanism) and often my feelings are more aligned with anger and frustration than with sharing with you what an amazing spirit my son has and how amazing and strong my wife is. She always makes the worst of situations tolerable for Liam and often at her own expense. If there is a hero in my book besides my amazing son it is without a doubt my wife. I am sure I do not tell her this often enough and I am sure that in my own state of pain and worry that I do not often have the energy and feelings left to tell her just how wonderful she is. The truth is, after the last year of fighting and our dramatic and sudden fall from recovery back to active treatment, I am left numb and to put it simply pissed off.

More than a year after Liam was first diagnosed I realize that I have less tolerance for peoples petty troubles and endless whining. I find that I have no need in my life for people who promise the moon and deliver not even a single ray of sunshine. I have less patience for mediocrity and for those whose mere existence is to just exist. The promises of help and support from many that in the end often don't materialize beyond words is something that no longer surprises me but rather is actually expected . At the same time I have met more truly amazing, caring people in the last year than in my entire lifetime. Perfect strangers in some cases who have truly gone above and beyond for Liam and our family. I have no need for those who treat Gretchen and I like lepers because they are sad for us. Those who avoid us because they are sad and focus on our despair versus the miracle that is Liam and the powerful inspiration that his spirit and bravery should be for everyone who has the privilege of knowing him. Don't be sad for us, be mad and motivated by us and by Liam. Get off your ass and do something for Liam, for kids with cancer, or any sick kid for that matter. Don't be sad and please don't say, let me know what I can do to help. If you truly truly want to help Liam and other kids like him and are not just saying it, your opportunity is just around the corner. When Cookies for Kids' Cancer, the non-profit we are creating with the help of some amazing supporters, launches in the coming weeks you will be presented with our answer to the all to common statement of let me know if there is anything you need or that I can do to help. The answer is you can hold a bake sale, encourage a business, co-workers, friends, family, and anyone you can to hold a bake sale to raise money for pediatric cancer research. Liam does not need anything more than he needs better treatment options at his disposal. Helping us help researchers discover the next best treatment for pediatric cancer is how you can really help.

Listen I know our fight and purpose is not for everybody fight but if you are reading this blog then you either care or are just here to witness the drama and misery and that would mean you are a bit twisted. So assuming each of you, more than 300 of you on any given day, are reading this blog because you truly care then we should be able to have more than 300 bake sales in the month of September. You would be doing something to support Liam and to support Gretchen's brain child. Do something to help us fight back against the relentless disease that does not want to let go of our son and the 4 year old kid who you have come to love. Gretchen might not have made it crystal clear in her post from a few days ago when she asked anyone interested in knowing more about Cookies for Kids' Cancer to send her an email because only 3 or 4 of you did so. Funny enough one of the people who did respond was one of those perfect strangers who know of us only through our blog. The email she sent Gretchen was what has kept us going the last few days as our family has been split in two with Gretchen and Liam in the hospital.

The government just approved an additional $30 million a year in pediatric cancer research to be spread across numerous types other next 5 years. A pharmaceutical company would spend twice this amount in one year just to advertise a new erectile dysfunction drug they spent hundreds of millions of dollars developing. Maybe this is why there has not been a new pediatric cancer drug developed in the last 20 years. Maybe this is why kids are treated with chemo agents developed for adults and the reason that most of the other drugs they are given were also never intended or proven safe for them. a few million dollars is not going to make a dent. It is going to take the kind of movement it took to make breast cancer a national priority. It is going to take people standing up and making some noise and spreading the news, getting involved. I appreciate the new support from the government but it is not enough. I am angry at the lack of support for children fighting cancer from those who have the power and the resources to truly make a major difference. The 3 large media networks recently announced an alliance to work together to raise cancer awareness and kicked off a campaign called Stand Up 2 Cancer. They intend to donate the funds raised to numerous non-profit organizations. Guess what? they did not mention a single pediatric cancer and have not aligned with a single pediatric cancer foundation. The coverage also did not feature a single child and yet cancer is the disease that kills more children per year than any other. More media attention is focused on what kids watch, listen to, or play with than what is most likely to take their lives. It is for this reason that we are on a mission. It is the reason we have dedicated what for most is sleep time to the Band of Parents and now to the creation of our own Cookies for Kids' Cancer. I have to tell you though that we are just two people who are locked in a battle with cancer to save our son and can only do so much. I don't think anyone really grasps what we face each day and I cannot expect them to since before we were thrust into the world of kids cancer I never gave it a second thought. I think at the end of the day what we and all families facing pediatric cancer endure is simply not something most can comprehend and for this I cannot blame people for not really getting it. In toady's world most are overworked, starved for time, too busy, and self focused to have anything left over for others. I don't think most people are even consciously aware of their lack of empathy. I know as I have been one of these types of people for years. My eyes have been opened to many realities that I was to blind to see before. I am in awe of those who have given so much of themselves to us and to Liam and especially to those who were not close or did not know us before Liam became sick.

Our town in New Jersey is not even aware of Liam's fight outside of a handful of people because we have done everything we can to make it seem like everything is normal and likely because we are not at all comfortable with appealing for help. Interestingly enough if someone was to look close enough they would see that the edges of our lives are showing signs of wear. For example, we have a pile of decking material that has been sitting in our driveway all summer and now that we are back in the fight in a big way it will likely still be sitting there next summer. I keep dreaming that I am an Amish man and my Amish community is going to show up and hold a barn raising like event like they do in the movies and my stalled year old deck project will suddenly be complete. In addition to the giant wood pile, a 20 yard pile of mulch is sitting next to it waiting for me to find time to spread it and this too is also a sign that things are not as they once were or as they appear to be. Small things that have fallen by the wayside. Not a year has gone by in the last 10 where the flower beds and trees in our yard were not edged and mulched but this year the endless war between grass and mulch beds is apparently being won by grass and weeds and I have no time or energy to step in. I could pay to have it done but that would mean that I was admitting that I could not do it because of our circumstances and for some reason admitting such is difficult if not impossible for me. The flower bed at the top of our driveway has been taken over by the adjacent field and is now full of weeds. It looks as if the house might be abandoned and that is not far from reality. My car's inspection certificate expired 2 weeks ago and the easiest solution at the moment is not to drive it. I am not complaining just reflecting on the ways that somewhat irrelevant tasks and needs are ignored and yet they bother me and stress me each time I am reminded of them as they are symbolic of our mess and the challenge we face. I have done all I can to try and keep up appearances as much for my sake as others but I am losing a little bit of this fight each week and it feels to me that as more things slip through my grasp there are that many more things that I have to hold together and make happen for various entities who depend on me. It truly comes down to decision like posting a tribute of child who has lost their fight on the Band of Parents website or cleaning up a flower bed. No brainer from my vantage point. Lately though I have grown tired of running at 200% and tired of watching my wife do the same. We made a conscious decision to give up one of Gretchen's key clients a week ago since the added workload, stress, and frustration was not something we wanted in our life at the expense of precious time together with our kids. Financially it is a setback for sure but there is no doubt for us as a family that it was the right decision. Our hope is that it will also free Gretchen up to focus more energy on what is really important to us at that is to see Cookies for Kids' Cancer make a meaningful impact in the world of pediatric cancer.

Imagine how hard it might be to put a smile on your face and go about life as if everything was fine when you were just informed that one of the families with whom you bonded and who bought your wife lunch several times when they found out she was in the clinic alone with Liam, just lost their son to the same cancer you are fighting. It is sort of like being spun around in a circle about a hundred times and then being required to show no signs of dizziness or better yet punched in the stomach 2 or 3 times but you are not allowed to show any pain. Hearing that someone you personally know has passed away will rock just about any ones world but imagine if you heard about the loss of a child's life about every two weeks on average. A child whose story you know all to well. Whose smile you have seen as they played with your son. Whose parents you know and whom you consider friends. We have chosen to convert this sadness and despair into vengeance and it will be science we intend to use as a weapon against the instigator of such sadness. We hope that those of you who have opted to observe our journey over the last year have seen and read enough and are now ready to do something to help us fight back and to make a difference in honor of Liam and all that he has endured and will continue to endure. Ok enough emotional release for me for a few months. Stay tuned for your regular scheduled programming about an amazing young prince. Just know that his fathers heart aches with immeasurable pain knowing there is nothing he an personally do to make him better short of hoping that the wizards who have been asked to save the young prince have the right magic potions to make him all better. The father has promised his wife, the brave prince, and the prince's little sister that he will do all he can to provide the wizards with the tools they need to be successful and he must not fail.

Food is, once again, the ENEMY

Thursday, July 31 Picture offering a child every food you can imagine from those you try to reserve and offer sparingly to those you freely encourage, and being rejected. Every food…every one except two are being rejected. And when I say everything, I mean e-v-e-r-y-t-h-i-n-g. Can you imagine the absurdity of rattling off every enticing sweet treat you can think of only to have the response be, “No Thanks?” The two foods he will tolerate eating are blue corn tortilla chips and home made Belgian waffles which, thankfully, are full of butter. It is so, so, so frustrating to see the weight Liam put on his body quickly evaporating. In two weeks he has gone from finally having a big enough stomach to be able to wear size 4T clothing to being back in 3T. I almost can’t bear to look at him naked. Granted, he doesn’t look as badly as he did when the skin literally hung off his body, but to me he is painfully skinny. And of course when Liam is at his home in New Jersey, his wardrobe of choice is nothing so there’s no hiding from the change in his body. I have to keep reminding myself that this is a short diversion we’re on, it’s temporary, we’re going to be back on track soon, and he was in the 75 percentile for his weight two very long weeks ago. The ONLY thing we can get him to “eat” consistently is Pediasure chocolate drinks. We call them chocolate milk and Liam loves them. And, after doing some research, we found out that if he drinks 32 ounces of Pediasure a day, he doesn’t even need to eat solid foods. How great is that? That’s right…food can be completely replaced with Pediasure. So, we follow him around pretty much all day and all night with a cup in our hand encouraging him to drink a sip every few minutes. There are times he drinks and times he looks at us and thrusts out his fingers and says, “In two more hours I’ll drink!” And, of course, we’ve had lots of conversations about the role of food in helping make a body grow, veiled threats that he won’t become a big firefighter unless he eats, and how his engine won’t run without gas to keep it going…but they all fall on deaf ears of a little boy who simply has no interest in food.

We’re in Hunker Down Mode

We made it through chemo officially on Thursday with a quick trip to the hospital on Friday for a blood draw to get his counts and see how his electrolytes were doing to hopefully avoid a heavy backpack of fluids for the weekend. From Thursday afternoon until we got back to the hospital on Friday, we were on Liam every few minutes with a cup of Pediasure encouraging him to drink. “You don’t want a backpack, Liam, do you?” “No – I HATE backpacks!” But the way he says the word hate is almost sweet. His hate doesn’t have years of living and cynicism behind it. His hate is more of an annoyance or something that prevents him from doing something. He is getting more savy about the hospital – “Is this a quick trip or a long one?” “What are they going to do?” “Are there going to be any owies?”

We retreated to New Jersey for the weekend and watched Liam emerge from what we’re now recognizing as his hospital shell. He doesn’t talk as much when he’s doing hospital time, he is still his sweet and inquisitive self but there’s something just a little bit off. The only time he emerged from his shell was on a visit to see Kristine and Pam at the CBS TV station on Thursday where he literally darted around the newsroom, studio and control room while discovering the magic of television. You never would have known on Thursday evening that he had just been tethered to an IV pole for four days receiving chemotherapy. It was at the TV station that we heard the “These cameras are great!” and squeals of delight we associate with Liam to come out. It was also troubling to me, at times, seeing him be more guarded with his interactions with people which makes me wonder if it’s a self-defense mode of his to become less engaged while he’s dealing with hospital time. He has been full of questions about why we have to go to the hospital and wants to know more about is happening, but he hasn’t asked the big question, “Is there something wrong with me?” We are still in the mode of answering every question thoroughly…but only answering the immediate question. Thank goodness it’s summer and he isn’t going from being in school to being in the hospital. I think if it was the school year and he was not able to go because he had to be at the hospital it would force more questions from him

Saturday, August 2, 2008

Some Housekeeping Items

Liam will need blood and platelets beginning next week. If you would like to donate either, please contact the blood donor room at Memorial Sloan-Kettering. Liam's blood type is O-. If you're not his blood type but donate in his name, he will receive a blood bank "credit." Blood type does not have any impact on platelets so anyone, as long as you pass Memorial Sloan-Kettering's long list of questions, can donate platelets and be used by Liam regardless of blood type. Here is a link with more information: http://www.mskcc.org/mskcc/html/11698.cfm

- We have been asked quite frequently, "what can we do to help?" At this point the thing we need the most is for people to join us in our effort to raise money for pediatric cancer research. And knowing how great the need is for research money for pediatric cancer funding to make up for the disparity between other cancers, and that pediatric cancer is the number one disease killer of children in the U.S....why wouldn't we? So, how can you help? In the fall we are launching Cookies for Kids' Cancer and are partnering with a national magazine to spread the word far and wide. The goal is to have individuals/businesses/organizations/churches/synagogues/schools/doctor's offices/clubs/societies/fraternities/sororities/students fulfilling community service commitments hold bake sales in their community in support of pediatric cancer research. We will have more details in upcoming weeks, but if you're interested please send an e-mail to us (gretchen.holt@gmail.com) so that we can send you information. Also, in September all 47 Lord & Taylor stores will be selling Cookies for Kids' Cancer cookies in the children's department as a fund raiser. If you live near a Lord & Taylor, stop by and visit their bake sale as a show of support beginning September 13th. We need people to be motivated enough to get involved in whatever way they can. Every person can make an impact and help institute change. Every child fighting cancer deserves a fighting chance and together we can and we will make a difference.

A very humble thank you for your continued love and support.
Gretchen, Larry, Prince Liam and Princess Ella