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.