"Just be.”

Without further adieu, we’re good. We’re savoring every smile, every romp in the snow, every run down the hill in the sled, every discovery, every funny line, every observation, every milestone, and every memory we can squeeze out of a gloriously ordinary day. We love the appearance of ordinary. It’s nothing less than glorious. We love blending in and Liam’s full head of hair certainly helps make that possible. We love Liam and Ella being on equal ground with Liam resuming the role of dominant older brother vs. Ella needing to tip toe around him and be the nurturing caregiver. We spend a lot of time showering our two pumpkins with an outpouring of demonstrative love and, at times, have carefully carried sleeping children from their beds to our bed just so that we can be close to them. Liam asks every night for us to snuggle with him like a bunny and we are more than happy to oblige. The past ten weeks haven’t been without the medical world crashing in on our effort to just be. The weekend before Thanksgiving and a week after a rough round of antibodies, we were back in Urgent Care with a temperature. Ella had an ear infection earlier in the week which included a fever, so we chalked it up a sisterly sharing of germs. But a fever in a child with a medical port is not something to take lightly so on a Saturday night, the evening of Fireman Tommy’s Cookies for Kids’ Cancer Pub Crawl (who said you have to bake cookies to support Cookies for Kids’ Cancer?), we were rushing back to New York City from our “country home.” It was a long night. We were finally discharged around 2:30 a.m. to go back to the apartment and meet up with Daddy and Ella. Even in the wee hours of the morning, Liam welcomed the blast of cold air on his face as the double glass doors opened and proclaimed how happy he was to be leaving the hospital. “Good Bye Hospital! See ya!! We’re going home!!” Hearing his relief made me realize just what a good sport he is when he’s there and how much he really doesn’t want to be there. When we finally found a cab, always challenging in a residential area at 2:30 a.m. in an area with few bars, Liam was making plans for Sunday. He was still sound asleep in our bed when the phone rang around 10 a.m. It was a nervous-sounding resident trying her best to be authoritative by telling me we needed to return to the hospital immediately to be admitted and start a course of IV antibiotics. Once again one of his blood cultures tested positive for bacteria. It was the third positive culture since August and once again, it was the same type of bacteria that had been previously explained away as rogue positives from contamination or other reasons. No. No. No. This isn’t what we wanted to hear. Was this another contamination issue? Could it be a false positive? He was resting comfortably in bed with no fever and hadn’t had one except for the original temperature that brought us to the hospital. Did he really, really need to be admitted? Couldn’t we just watch him closely? Could we do IV antibiotics at home? How could I crush his spirit again by telling him we had to go back? No. no. no. no. no. We quickly found a friend Ella could spend time with and made arrangements for her to be picked up and loved. And then with heavy hearts but with a light tone of voice, explained to Liam we needed to go back to the hospital. He wasn’t happy but he understood. And with the added bonus of having Daddy along for the trip, we returned to Urgent Care with the condition that we were going to have a consult with infectious disease first before being admitted. It’s always a fine line of not wanting to be a “difficult” family but wanting to protect your child’s spirit by doing everything possible to avoid a hospital stay. It was a long day…a nine-hour odyssey in a small room in Urgent Care. We met with the head of infectious disease for Memorial Sloan-Kettering, an obviously brilliant man who wore glasses decorated with rhinestones on the wings and who drew on the sheets of the bed to illustrate his theory as to what was going on with Liam’s no symptoms but successive positive cultures. (We’ve since been trying to explain to Liam that he can’t draw on his sheets even if the doctor did.) In the face of three positive cultures and a desire to not constantly look at a thermometer as a bad thing, the decision was made to remove his medical port which seemed to have some bacteria hanging out in the “sludge” that collects in ports. It was now after 7 p.m. and in order to be put on the emergency surgery schedule, we needed to be admitted and hope we could get on the schedule as an emergency add on. Damn. Daddy left to retrieve Ella who had been with a preschool friend the entire day and made herself so comfortable that she took a nap on Valentina’s mommy’s chest. We finally got to a room, in isolation because we had his nose swabbed for RSV just as a precaution, around 9 p.m. Liam hadn’t had a temperature in over 24 hours. He finally fell asleep around 11 p.m. after proclaiming he had had a long day. And then, before I could even spend time thinking about the decision that was made, in came Dr. Kayton bright and early on Monday morning to take Liam to the procedure room to remove his port. I carried Liam down the hall of the inpatient side and crossed the hallway to the out patient side of the hospital, past the cubby-size waiting area where nervous parents hold vigils, to the room he is familiar with as the one where “blood” is taken from his pelvis. (We haven’t explained that they’re actually taking bone marrow…we haven’t felt like it was something he really needed to know so we have explained it as taking blood, something he is familiar with.) And then just as we were entering the room, I quickly scanned the landscape to see a large tray of surgical tools next to the stretcher. I kept Liam’s head tucked next to my head so he couldn’t see in the room. “Dr. Kayton – Could you please cover those up?” There are certain things Liam just doesn’t need to see yet. And yet again, Liam and I assumed our familiar role of me holding him close to my chest as the white medicine he has such an affinity for enters his system, he quivers and shakes, and falls into a drug-induced sleep. I hate laying his body down on the procedure room table. I hate leaving him. I just hate it. But I did. I kissed him on both cheeks and his forehead, told him how very much I loved him, and left him to the expert hands. As I was leaving, Dr. Kayton said that they were going to be taking bone marrow too…per Dr. Kushner. Oh – OK. Sure. No problem. Bone marrow and bone marrow aspirates. The good news was we wouldn’t need to come back in a few weeks for more anesthesia. And then I waited, along with nervous parents and children waiting their turn to go to the procedure room. It’s a hard wait…you can almost smell the nervous energy. You can’t read. You can’t focus. No song sounds right to listen to. You just wait. He came out of anesthesia and promptly threw an anesthesia-amplified fit when he realized there were bandages on his pelvis. He hates the compression bandages used to stop the bleeding after a core sample of bone and bone marrow are taken from four sites in his pelvis. Unlike the early days when he would leave the bandages on for weeks, he now insists on getting them off as soon as possible. He cried and cried and attempted to pull them off with clumsy arms that weren’t quite working right from the white medicine. I tried and tried to comfort him and explain why they needed to stay on just a little while. He compromised by falling asleep on me and I carried him back to the hospital room and waited for him to recover so that we could leave. He woke up, declared himself well enough to leave, and we started to discharge process. He wasn’t happy to discover the peripheral IV in his arm which was put in under anesthesia. He was even less happy to hear it would need to be removed before we could leave. It took countless packets of adhesive remover to loosen the bandage securing the IV in place in the crux of his arm. When it was finally loose, he very nervously and cautiously removed it and was delighted it didn’t hurt. After the tube was out, he examined it, played with it, commented on the small size and no needle, and generally was fascinated.
e returned to our home in the country on Monday night to recover, think about the significance of Thanksgiving and resume just being. It was a glorious week of being together and on Thanksgiving, we gathered at the dining room table which, to Liam and Ella’s delight, was festively decorated with twinkling turkey votives. Liam, true to picky food eating preference, ate chicken nuggets while we all ate a Thanksgiving feast. Last year on Thanksgiving, both kids were asleep when we finally sat down to eat. And as soon as we said grace, Larry and I burst into spontaneous tears. This year Liam and Ella were with us at the table and with Grandma’s help, we enjoyed a meal together for which we were very thankful.
And then as soon as Thanksgiving was over, the 2nd annual cookie drive commenced.

The cookie drive is all encompassing and every dozen cookies sent as a gift equals hope. We pressured ourselves to make this year’s sale more successful than last year’s. It had to be. We have a disease to do battle with. And knowing how much good last year’s cookie sale did, we had to make this year’s sale more successful. Every night and weekend was spent answering consumer questions and every hour we weren’t at work was dedicated to cookie work. At one point during the cookie craziness, we realized that Ella had learned how to say, “Cookies for Kids’ Cancer.” Mid-way through the cookie drive, we had two marathon baking sessions at a cooking school in New York City to bake 13,000 cookies representing the number of children diagnosed with cancer each year. The cookies, which were packaged in gift boxes, were sent with notes of love to families staying at Ronald McDonald Houses across the country as a showing of support. The volunteers came from all over like Emily who flew from North Carolina to be with us and Katie and her family who drove several hours from Pennsylvania. Dozens of people arrived early on a Sunday morning and stayed into the evening. Aunt Marge and Uncle David manned the ovens with precision. Fran and her husband, Jackie, Fraya, Maggie, Tim and his wife, John Brooks and his amazing family, mothers from Liam’s and Ella’s preschool, and so many people from so many walks of life…some new to the cause and some for a second year. It was labor intensive work – hand carrying boxes across a lobby that didn’t allow hand trucks, bringing supplies from the apartment to the cooking school, transporting boxes addressed and ready to be shipped to Ronald McDonald Houses eight blocks, making a pickup of supplies in Brooklyn, and constantly be looking at the boxes of dough and calculating how much was left to bake. We baked on a Sunday and Tuesday.

On Tuesday afternoon after we had finished baking and most of our volunteers had left a beautiful woman with luxuriously thick hair introduced herself to me. She was about my age. Her name was Lillian and she found her way to our bake-a-thon via a mutual friend. I liked her the minute I met her. And then she told me our true connection. She was a neuroblastoma survivor who was diagnosed when she was around 2. She had been given less than a five percent chance of surviving. She beat the odds. And she lived less than a block away from us. She and Liam shared the same surgeon and she showed me the signature Dr. LaQuaglia scar that wrapped around her body from her belly button to her back as proof. Her teeth were normal. She didn’t have hearing aids. She was smart. She was successful. I needed to meet her. I needed to know she existed.

And then on Wednesday after all our packages were on the way to families who were away from their homes, Liam had his three month scans. The scans that leave you with a dry mouth and weak knees. Liam was completely oblivious to the stress, played the role of greeter to everyone he saw. He was Mr. Personality serenading nuclear medicine with sounds from his blue guitar. Wednesday was the CT exam and MIBG injection. Thursday the MIBG and brain MRI. The brain MRI was incredibly loud. Liam didn’t like it and, as he does so often when having to deal with things he just doesn’t want to deal with, opted to fall asleep during the MRI. It made me think of the time he was on a ventilator which he hated with a passion and opted to fall asleep instead of having to be awake and uncomfortable.

And when the results came in, we reset the clock for 90 days. We could go on just being.

Christmas was a magical time. Liam and Ella reveled in the excitement of Santa. Ella slept in Liam’s bed on Christmas Eve. They were both too excited to fall asleep and kept each other company with talk about Santa. We watched with joy as they opened presents and squealed with delight. Liam loved his model of the solar system. Ella loved her baby doll twins that came with a trundle bed, blanket and pillows. They played and played and were just beyond excitement. We spent two weeks in New Jersey, the longest period of time we’ve been here since Liam was diagnosed. It was incredible. We all felt “normal.” It felt good. It felt natural to be here in our home. It snowed which brought a new level of joy and entertainment. Our sledding jaunts were filled with laugher. Every day Liam would talk about how much he loved the Christmas tree. When the day came to take the tree down, Liam and Ella were both so sad to see the tree leave. Change is never easy, whether it’s a Christmas tree coming down or the loss of the innocence we had before February 26th, 2007.
The only disruption to our oasis of peace was the need to unexpectedly drive to Memorial Sloan-Kettering on Wednesday, 12/31, to pick up GMCSF (the medicine that stimulates white blood cell production which makes antibodies more effective). Liam’s HAMA negative status allowed him to move forward to receive more antibodies, a very good thing. The Wednesday before antibodies, he begins daily injections to makes lots of white blood cells, the “fighter guys” as he calls them. We spent New Year’s Eve and the weekend following ensconced in our cocoon sledding, climbing on snow piles, pretending we were at a winter resort, and trying to stay in the moment. I suppose it was somewhat apropos for cancer to invade our oasis on the last day of the year. Liam took the news about needing shots fairly well. The first three nights we dealt with the normal bout of tears and the feeling of torturing your child. But the fourth night he surprised us. While Larry and Ella were out picking up a pizza, Liam’s latest passion, he let me give him an injection alone. We discussed where I was going to give it to him, how I was going to insert the needle, how I was going to push in the medicine (s-l-o-w-l-y) and how I was going to remove the needle. And then, he stood in the center of the playroom without flinching or crying and received his injection with no complaints.

After two glorious weeks of just being, it was time to return to New York. I’d be lying if I said I escaped the thought of cancer. I never can. It’s always there. It’s the monkey that rides on my back wherever I am and whatever I’m doing. The monkey was heavier knowing that friends of ours were dealing with tough news. I kept thinking of them and looking at sales of cookies and feeling like I failed because we didn’t sell as many cookies as we hoped. I kept feeling the need to live for every moment, something we all should do anyway, but with an added sense of urgency. I have not lost faith or changed my belief that Liam will be here for a very long time. He’s a lucky kid. We taught him how to flip a coin over the holiday break and over and over and over again he correctly called if the coin was a head or tail. He didn’t miss. But I know just how tough and relentless our cancer is and that it doesn’t like to give up easily which makes me more focused than ever to not only dedicate myself to raising money for pediatric cancer research but also balancing it with loving and living.

The round of antibodies at the “regular” dosage went well. He despised the finger prick on Monday, but knew there was no way around it. He didn’t like the temporary line which is now a necessity since he is “port free,” but he dealt with the experience. I had to grab him and bring him to the chair in the IV room where it took two of us to restrain him while he kicked and screamed at the top of his lungs. A third nurse skillfully pierced a vein to insert the line over screams, kicks, and attempts to pull his arm away. The good news is he is really strong, a great sign after being pummeled with high doses of chemo. The bad news is it takes more to restrain him which makes you feel awful. Once it was in, he was OK. I felt like I was violating him and let’s face it, I was. I hate having to grab him. Hate it. It’s the one time that I always feel the tears welling up and a wave of anger bubbles up to the surface. But then it’s over and he’s OK. I’m always amazed he doesn’t completely reject me for putting him through the experience, but whether it’s restraining him to put in an IV or giving him an injection, I’m the one he wants to have hold and comfort him afterwards.

He went to school every day during the week except Tuesday. It takes a while to recover from the first day of antibodies. The schedule each day went something like this: wake Liam up early to ask him if he wants to go to school; take him and his hospital paraphenalia to school; work while sitting on a bench outside his classroom; collect him and his hospital stuff including stroller and catch a cab to the hospital; ask him if he wants pizza from the pizza place next to the hospital; maneuver him, the stroller, his hospital bag and my portable office to the pizza place; get him in the stroller (he’s usually exhausted after school) up two steps and into the pizza parlor; order two slices with extra, extra cheese; balance the box of pizza on the top of the stroller cover and walk to the hospital while pushing the stroller; go to the 9th floor and check in; get to our treatment room and encourage Liam to eat his pizza as quickly as possible so that it will stay in him and he won’t throw it up after the antibody infusion; collect a vial of blood for a CBC from the temporary line and hope and pray it works and stays in place; start the premedication process which includes anti-nausea medicine and pain killers; give him an injection of GMCSF; wait an hour to start the infusion; go through the typical and troubling antibody infusion which includes screams of pain; wait for him to pass out which he does while draping himself on me and instructing me not to move; and then waiting for him to recover to the point he feels he can be moved to go home, the point that if he’s going to throw up, he usually does. As a human being and parent, your natural instinct is to try to make a child suffering more comfortable by doing anything you can to alleviate pain. I would want to rub him, caress him or do something that I thought would bring relief. As he was dealing with his pain, he would quietly tell me, “Mommy – Just be. Just be.” And I would just be…be whatever he needed me to be to help him bridge the canyon between being blinded from pain and being able to cope. His words have become my mantra as I try so hard to just be. Early in the week I saw a mom I have met a few times and who I adore talking excitedly with several of the nurse practitioners. I assumed she was in the clinic for 90-day scans. On Friday, I saw her again which didn’t make sense to me since she would only be there for two or maybe three days dealing with scans. And then she broke the news. She told me that on the day of her son’s five year anniversary of diagnosis, she found out he had relapsed. Dr. LaQuaglia did an exploratory surgery on Monday and discovered a mass in her son’s original tumor location. Her news made my head spin. I felt like I was floating above my body listening to a conversation between two people that was almost implausible. Are you kidding? Almost five years to the date of his diagnosis? Are you kidding? He was gearing up for the start of chemo which this time would be challenging because he lost a kidney during his first go around with neuroblastoma. He only had one kidney to help filter the toxic chemotherapy agents from his blood. And the thing that has happened so, so many times happened again. I felt like I was running through a haunted house with scary monsters on the other side of every door trying to find the one door that would lead me out.

That weekend we booked a trip to Disney World for the following week.

We went to Disney World on Thursday, January 22nd under the auspices of celebrating Ella’s 3rd birthday. Liam played the role of mayor. Ella was Liam’s loyal side kick. He introduced himself to the pilot. He thanked the pilot for a safe flight and told the flight attendants he’d see them soon. Ella and Liam had breakfast with the Disney princesses. While meeting Cinderella, Liam invited her to join him for breakfast. When she told him she was busy greeting other knights and princesses, he invited her back to his pretty hotel room to play. Ella was completely enthralled with the princesses and other characters. Liam rode the Thunder Mountain roller coaster 12 times. Yes, 12 times. Ella was too terrified to ride it but after Liam’s 9th trip, Ella worked up the courage to go on the scary roller coaster. She did great safely nestled next to Daddy but also chose not to ride the Coaster again. Once was enough for our very sensitive little princess. They were randomly selected to be junior casting directors in the Indiana Jones show. In front of an audience of more than 1,000 people, they stood on stage and said, “Lights, Camera, Action!” They did a fantastic job! We thought for sure Ella would be too shy to stand up in front of a large crowd, but with Liam at her side she did it (http://www.youtube.com/watch?v=Maa3AJ4RnbQ). Of course less than three minutes into the show, we needed to leave the theater because Ella was terrified of the fire on sate. We rode rides; watched parades; marveled at elephants, zebras and giraffes within a few hundred feet of our hotel balcony; and enjoyed being pampered by the Disney staff and warm weather. Liam and Ella had so much fun. Small World was a big hit as well as the Buzz Lightyear rides. But Liam’s favorite by far was riding the super fast, gut wrenching, dizzying Thunder Mountain roller coaster. He would laugh nonstop, hold his arms up in the air, and embrace the experience…the same way he has approached life. He would make his presence known wherever we went whether on our early morning safari with George the guide (“Oh George! I have another question for you! George! Come eat breakfast with us at our table!” And George, unable to resist the charms of Liam, did) or with the hotel staff (“Mommy – I need to go see my friend Jack and see how he’s doing today.”)

The evening we returned from Disney, we received the news that Liam’s blood which was drawn on the day we left for Disney (nothing like a quick trip to the hospital before we could escape town) was HAMA negative and we could proceed to another round of antibodies. The injections started on Wednesday. We’re gearing up for round two which begins 2/2 and worrying about two more friends who recently received difficult news. It makes my heart physically ache.

So how are we? We’re good. Living in the moment and trying to do what we can to make a difference and doing our best to accommodate the monkey living on our backs. It hasn’t gotten any easier in nearly two years of him living there and we’ve learned the more you fight him, the harder the burden is to carry. Just be. Just be.

http://www.cookiemag.com/homefront/2008/12/gretchen-holt

Thursday, November 13th. Fourth Day, Second Round, High Does Antibodies

A Week that has left me Weak.

I can’t even begin to explain how hard this week has been. Liam turned 4 ½ on Thursday. He spent the day undergoing the fourth day in a row of a very intense antibody treatment intended to give him life but left him limp and with little life in him. Like the last round, he spent the week curled up in a fetal position; whining “Mommy – I want you” if I stepped away from him; clutching me with both hands wrapped around my neck when going through the super painful part of the treatment and commanding me not to move; not talking except to cry “I don’t want Ella close to me”; gingerly sliding him into and out of a cab on the way to/from the Upper East Side; not eating…at all…; throwing up green, vile smelling bile with such force it flew out his nose; refusing to take yet another “pillow” (pill) for either pain, prevention of nausea, antibiotics left over from the infection that wasn’t but that we were still taking precautions to treat just to be certain, or to prevent a fever…but always in the end obliging and swallowing up to two pills at a time; and crying in pain and discomfort beginning Monday afternoon. It has been heart-wrenching. And on Monday we had a bit of a scare when Liam’s body reacted on day one to the onset of a high dose of antibodies coursing through his body combined with the narcotics intended to shield the pain with a low blood oxygen rate and extremely high heart rate. It was one of those hand-shaking-uncontrollably moments when you and a nurse realize something is very wrong, hear your voice say to the nurse you know so well, “Cat? Cat! Cat? Now, Cat, Now! Cat, Now!” as you watch her quickly go into emergency mode as she assembles an oxygen mask and places it over Liam’s limp head being cradled in the crux of my arm with his equally limp body sprawled across me, and seeing her press the red emergency button that just two weeks ago Liam was mischievously threatening to push to see what would happen. Watching a swarm of doctors, nurse practioners and nurses descend into the small treatment room on an unresponsive Liam yelling things like “how much Narcan (a drug used to reverse the effects of narcotics) did he get and when,” “he has a pulse!” and “Breathe, Liam, Breathe! Breathe, Liam, Breathe!” Watching a wet spot spread across his jeans as his body lost control. Noticing the “crash cart” used only in emergencies positioned outside treatment room nine where we were located. Watching him throw up and smelling the pretzels he had eaten handfuls of a few hours earlier in the contents violently expelled from his stomach. Calling Larry with a trembling voice to say, “Get here now!” but not being to explain what was happening because the vice grip on my throat prevented me from saying anything else. And gratefully seeing the numbers on the monitors returning to normal ranges. I don’t want to do that again.
On Thursday, November 13th, I had a conversation with a mother whose son was being treated next door in room number eight. She was from Barcelona and was in the tiny room that was separated from ours by a wall that went ¾ of the way up with a curtain as a door. I had heard her talking during the week and noticed a certain level of stress in her voice. I know the sound. I recognized it as one I’ve heard in my own voice, as hard as I try to hide it. She was in the room with her son who was undergoing antibody treatment and was sleeping off the pain of the treatment courtesy of “comfy” medicine, and her younger son who was totally cute and completely oblivious as to the significance of his surroundings. I said hi and she embarrassingly looked at me and said something in Spanish that indicated she spoke no English. We tried anyway to communicate. It was her son’s second round of antibodies. He was seven. He was diagnosed in February 2008, exactly a year after Liam. He had undergone bone marrow transplant. They flew back and forth to Barcelona between treatments. Her younger son 2. She was staying at the Ronald McDonald House, where so many families who come to Memorial Sloan-Kettering from out of town and out of the country stay. I gave her my e-mail address and told her to write to me when she was next coming back so that I could help her any way I can. And then something that rarely happens to me happened. I looked at her and felt tears welling up in my eyes. She saw and we hugged and cried. She talked. I had no idea what she was saying but it didn’t matter. I wanted to take her pain away. I didn’t want to meet her under these circumstances. I wanted the pain for both of us to go away.

We’re now in New Jersey. It’s early Saturday morning or late Friday night depending on how you look at a clock. Liam hasn’t walked more than five steps since Monday afternoon and hasn’t eaten since Monday, but he did smile twice tonight. We are so eager to see him emerge from his stupor. We want him back. We need him back. We miss our baby boy. Ella misses her brother. We can’t wait to laugh with him and watch him be a little boy. Yet we are so grateful to have the opportunity to receive this treatment which is a few streets away from us. We could be flying here from Spain instead of taking a 10 minute cab ride. And for that, we are so very fortunate.

A bizarre week.

Even when I tell you, I’m not sure you’ll believe me.
What happened October 28 – October 31

A conversation with Liam on Saturday, November 1st around 3 p.m.

“Mommy, what are those lines on your forehead?”
“Oh, honey, they’re from worrying about you and Ella.”
“Why do you worry about me and Ella?”
“Because I love you and Ella and will always worry about you two, even when you have your own children.”
“Mommy, why don’t you get some butt-tox for your lines?”

When I walked in the door from work on Tuesday, the 10th day in our 21 day hospital break, I was greeted with squeals from Liam and Ella and the news that Liam threw up part of his dinner (the turkey meat balls he used to love but hasn’t eaten in months after his taste buds changed from chemo) but continued eating after he threw up. OK. That’s not normal. Ella is our thrower upper, not Liam. In fact, Ella had thrown up on Monday night and just that morning before she went to school after choking on some post-nasal drip in her throat. (She can throw up just with the mention of the word, quite a talent.) And then Liam’s squeals quickly changed to whines, “Mommy, I want you to hold me.” “Mommy, Hold me…just hold me.” Something was off, but he looked fine and I wanted to believe it was nothing. At around 7:45, Daddy felt his head and thought it felt warm. Liam was uncharacteristically out of gas. Out came the thermometer and from there, with a temperature of 101.5, an adventure full of many plot twists and turns began. For Liam, a fever is anything over 100.4 and earns an instant trip to the hospital. Because he has a medical port connected to a central line, the concern is that a fever could be an indication of a line infection which can come on very suddenly and be life threatening. You have no choice but to take a fever seriously, no matter what time of day or night.

I put the numbing cream on his medical port knowing it was going to need to be accessed. As soon as Liam saw the tube of cream, he started to cry. There’s only one reason that tube of cream comes out and he was not happy. I felt like I was breaking our deal of three weeks of no hospital time, except for a blood draw to test to see if he can continue with a second round of antibodies. And as soon as Ella saw me putting cream on her brother’s “button,” she started to cry and in a shaky voice kept saying, “Don’t leave, Mommy. I…don’t…want…you…to…go…to…the…hospital.”

We went to urgent care with Liam in his soft, zip-up footed jammies wrapped in his comforter and snuggled in the stroller. We anticipated a quick trip for antibiotics so we travelled light – puppies, pillow, super soft yellow blankie, movie player, a collection of movies and a cup with water. The ride to the hospital was quick and as we were walking down the long hallway on the ground floor that snakes through the belly of the hospital over to urgent care, we passed Liam’s favorite room: the steam pipe room. The doors were open, a rare sight, and a group of workers were walking in and out with pipe, tools and other important looking pieces of equipment. We stopped and I knelt down in front of the stroller to answer Liam’s questions. “What’s that pipe for, Mommy?” (Luckily the pipes were labeled with arrows indicating the flow of steam and a few descriptive words allowing me to actually explain what each pipe was for which elevated me to rock star status in my son’s eyes.) One of the workers with the word “Supervisor” embroidered on his shirt stopped to say hello. Liam eagerly but not with all of his typical energy told him that the pipe room is “awesome!” The man was dripping with sweat and his shirt was soaked. He explained to Liam that a pipe was broken and that the pipes in the room all carried steam that brought heat to the 10 buildings that were part of the hospital system. Liam was in nirvana. He asked question after question. He wanted to know how the man could get so hot that his shirt could be soaked. He wanted to know how steam could heat a building and I lamely tried to explain at a level he would understand and that would make sense. After watching the activity for as long as he could, Liam finally looked up at me and said, “I’m ready.” So off we were to urgent care. The waiting room was packed and our stroller was the only one in the waiting room. There were stretchers lining the hallway filled with people in various states of discomfort, most of them with skin with a yellowish tinge that is often seen in cancer patients. I immediately whisked him over to the check in area and turned his stroller around so that his back was turned on the sea of waiting patients and their worried-looking families and friends. We checked in and very shortly after were taken into the triage room. His temperature was taken. It was 104. Not good. We went back to room 5 which is one of the isolation rooms, not because Liam was a risk to other patients but because it was the only open room. We waited for over an hour in the isolation room before anything happened and then went through the normal routine of questions; wrestling with and restraining him in order to access his medical port over blood curdling screams of “MOMMY – DON’T LET THEM TOUCH ME!!! MOMMY – NOOOO! NOOOO! NOOOO!!!; a visit from the pediatric fellow who asked many of the same questions; a Tylenol pill for my pill-popping baby; and finally a dose of antibiotics but not before having to track down a “pee pee cup” (urinal) which Liam always reverts to when having to pee when he’s in the hospital. I’m convinced he insists on using a urinal because he likes them. We got the antibiotics and during the course of the infusion Liam bolted upright and said in a panicked voice, “Mommy – I’m going to throw up! I’m going to throw up! Get me a throw up bucket quickly!” Of course there wasn’t one in the room. In pediatric rooms, there’s a ready supply of them and you can almost always find one within an arm’s reach. So, I grabbed the trash can, pulled the bag out, grabbed an empty bag underneath and got it to him just in time. And between sessions, I ran out to the nurse’s station to ask for someone to grab a bucket which is the same shape and size of dishwashing pan in a lovely shade of harvest gold. No bucket came. He finally fell asleep. The antibiotics finished, his temperature was gone, but because it had been so high the fellow wanted him to get an extra hour of IV fluids. OK. Fine. That meant we wouldn’t be leaving until around 2 a.m. I hope I can find a cab on York Avenue at that hour. After the additional fluids, the nurse came in to begin the process of getting us out which would include deaccessing his medical port, never an easy thing. Just to be sure everything was OK, I asked her to take Liam’s temperature. It was 104. Crud. With a temperature that high, I had a feeling we wouldn’t be going home. The nurse called the fellow who decided she wanted us to stay. Unfortunately there were no beds available on the pediatric floor, so we had to spend the night in urgent care with the directive to go straight to the day hospital when it opened. Liam wanted to know what was going on. I told him his temperature came back and so we needed to stay a little longer. He wasn’t happy but was too tired to protest. At this point I was happy I had decided to bring along Liam’s comforter which was now serving as our blanket as we huddled together on the urgent care stretcher. Liam’s fevers caused him chills and then sweating so badly I’d either need to be rubbing his body all over to warm it up or stripping off his pajamas and fanning him when his fever was breaking. Finally it was 7 a.m. and we could go upstairs to a place we were more comfortable with and that was better prepared and equipped for young patients. We waited, and waited and waited for the OK to leave urgent care and go upstairs. After an hour of waiting, a new nurse came in to tell us she was waiting to give a report on our situation to a nurse upstairs on the pediatric floor before we could go. Liam wanted to leave. He’d had enough of urgent care. And then there was more throwing up into a plastic garbage bag. And finally, after Liam and I were ready to blow a fuse, we were told we could go upstairs to the pediatric day hospital…after one last set of vitals. His temperature was back up but not 104 again. After popping a Tylenol, we headed upstairs.

Wednesday morning and we’re in the day hospital, also known as the clinic although to me there’s nothing “clinic like” about the 9th floor. Dani, one of Liam’s favorite nurses and who I always feel comfortable with, was our nurse. We were in a bed in the room off the IV room that is divided by a curtain and usually reserved as a holding area for surgery patients. The second the stroller turned into the IV room, Liam immediately wanted to know what we were doing there. He associates the IV room with one of two things: a finger stick which he despises or having his medical port which he despises even more. When we walked by the IV room treatment bays and the finger stick area, he relaxed. And then the waiting started. First we had to see Ester to be examined. “Has he been sick?” “No.” “Has he been around anyone who has been sick?” “Ester! He’s in preschool…of course he has! And, Ella has a cold but it hasn’t come with any temperature as far as I can tell.” “Has he been complaining about anything?” “No.” His mouth, eyes, ears and nose were examined and all checked out as clean. And then back to the bed to wait and hope no more fever. Liam was exhausted and didn’t want to get out of the stroller. I have always suspected that Liam’s stroller is his safe zone where he knows nothing will happen and out of respect, I have listened and never allowed anything to happen to him when he’s in his safe zone. It was late morning and no fever. Early afternoon and no fever. At some point during the day Liam woke up and said, “Mommy – I’m wet.” After receiving so much IV fluids, his little body overfloweth but he was too tired to realize he needed to go. Unfortunately because we thought we were only making a “quick trip” to the hospital, we didn’t have our normal arsenal of supplies. I told Liam I could get him a pair of jammies from Teres in Child Life. He immediately burst into tears. He didn’t want to wear hospital jammies, he wanted to wear his dinosaur jammies from home. He wanted Daddy to bring those jammies right now and he wanted Daddy there right now. We took off his footed, one-piece jammies so that he could take off his underwear, and then put the wet jammies that I lined with paper towels back on so that he couldn’t feel the wetness. He went back to sleep in the stroller and I fell asleep sitting upright in a chair. And then Dani came in to break the news. Liam’s blood culture taken when we arrived at urgent care tested positive for bacteria, the same type of bacteria he tested positive for in September. Ahh, that explains the temperature. But oh no, I know what a positive culture means….an inpatient stay. We were being admitted. Liam was sleeping. I started to cry. He was so looking forward to Halloween. He was having a good time at school and making great friends. He was enjoying being a little boy and far away from the hospital. I cried for him. I cried because I was tired. I cried out of frustration. I cried for not having any control. But then I accepted and started thinking about what I needed to do to get him out of the hospital in time for Halloween. I asked if we could go home on IV antibiotics, something I learned how to do during his last visit. I felt like I was being scolded for suggesting something so risky when we didn’t even know what kind of bacteria it was. And then I was reminded that if it was gram negative rods, it could be sepsis which is extremely serious. OK. Fine. But I’m still going to hold onto the goal of getting him out in time for Halloween. What the heck…why not? I always like to have a goal to shoot for. One of the doctors from Liam’s team came in to check on us and discuss her recommendation. Her suggestion was to remove his central line as quickly as possible and have it replaced with a temporary line. The explanation was that the bacteria was looking like the same one he tested positive for in early September which would indicate that even with a two-week course of powerful Vancomycin antibiotics, the bacteria had colonized in his port which it is apt to do and that it would keep regrowing unless it was removed. It would also mean we’d need to treat the infection through IV antibiotics and a temporary port which would mean the return of dreaded dressing changes, an increased risk of infection with tubes hanging down his chest and a new incision on the “clean”, incision-free side of his chest. OK. OK. All of this stuff is nothing if it means avoiding a fight against sepsis. I remembered hearing from my dear friend Lee how scary it was when Bob was battling sepsis. I didn’t know many of the details other than it was really bad. Dr. Kayton, one of the incredibly talented surgeons in the stable of incredibly talented surgeons in the pediatric department and one of the most empathetic physicians I’ve met came to visit. We discussed the positive blood culture, the need to take Liam’s port out and then the need to put in a temporary port. To Dr. Kayton, this was no big deal. He kept saying, “This is something we can fix.” To me, a mother trying to protect her son from from a different perspective, it was. I just wanted to make absolutely sure we needed to do this. Was there a chance that even though the bacteria was looking like the same he tested positive for six or so weeks ago, could it be possible it was a new bout with this bacteria and not a situation of the old bacteria coming back? If there was even a chance, I wanted to make certain we looked into that possibility. Where could he have been exposed to bacteria? Ridiculous question, I know, since bacteria are everywhere. But how could he have gone so long without any bacterial infections, more than 20 months, and then have two within a six week period? And how did he go from feeling great on Monday to awful with a high fever and higher white blood cell count on Tuesday? Monday afternoon he was in a class where he planted seeds. And when he came home he even had some dirt around his nose after being particularly exuberant. Could it be possible he picked up the type of bacteria he tested positive for which is common in dirt from the potting soil? If it was at all possible, I wanted to chase down that theory, even if I was being told it was highly unlikely. I kept trying to sum up my limited knowledge of the way bacteria can enter a body to try and come up with some explanation while also asking every few hours if anything had changed in the tests and if the super scary gram negative rods showed up. Liam took cat naps in the stroller. Between his naps, he kept asking when we were going home. I could only tell him, “as soon as we can, honey, as soon as we can.” While we waited to see if we were possibly going to be released with IV antibiotics, I could hear activity in the bed next to us. It wasn’t the normal activity of pre-surgery, which is usually what the two beds in the room were reserved. Voices sounded worried. “Did he eat anything?” “Ben, Ben, stop doing that Ben.” “Did anything different happen?” I could hear a young child who sounded about Liam’s age crying a very bothered cry. A yamika kept flying to the floor on our side of the room and his mother was yelling, “Ben – Your yamika! Ben – Not your yamika.” I would pick it up and blindly hand it around the curtain to Ben’s mother who would take it from me. I could hear people coming in and out. The questions weren’t the questions you normally hear. I could hear doctors from anesthesia coming in to check on Ben. I could hear them saying they used the same medicine they always use. I heard a nurse talk to a mother about how to use an Epi pen, something I certainly hadn’t heard before. I heard talk of an allergic reaction. The mother was asked the same question over and over by a litany of people, “did he eat or do anything different than his normal routine?” The mother sounded scared, frustrated, tired, perplexed, and emphatic that no, her son hadn’t done anything differently. It was sounding a bit out of control. They kept talking about his face…his face. Ben bit his mother out of pure agitation. He clearly wasn’t happy. All of the commotion woke Liam up who alternated between looking at me to get confirmation that the child he heard crying less than an arm length away from him was OK and watching Sponge Bob Square Pants, an activity reserved only for the hospital. Finally after an infusion of Benadryl, Ben fell asleep. He mother sounded relieved. A nurse brought her a video on how to use an Epi pen and talked with her about how to use it. “Where do you put it?” “Usually in the leg.” And then around 3 p.m. came the icing on the cake which sealed our fate…his temperature shot back up to 104. His infection was still out of control. The wheels for an inpatient stay which we were trying so hard to avoid were rolling forward. Discussions were taking place about taking Liam’s central line out. I knew the danger and wanted it to be gone, but also wanted to make sure we were doing the right thing. And any hope of leaving the hospital that day were now completely dashed. Dr. Kayton came back to visit. Liam was sleeping. He showed me what the temporary port looked like and my stomach churned. I asked questions. He answered them all calmly. The temporary line looked ugly and obtrusive and I hated that it would mean more scars for Liam, scars on the “scar free” side of his body. Dr. Kayton left and I sat alone feeling so disappointed for Liam and trying to come to grips with what was about to happen. A voice said, “Do you want to see what a temporary line looks like?” It was Ben’s mother. I walked around the curtain. Ben was sleeping a deep drug-induced sleep on his side. His mother stood up from a chair where she was sitting holding the Epi pen instructional video. She was younger than me but seemed older. She was wearing a skirt, something I would never do because of the inconvenience but she did for religious reasons, and had her long hair secured by a net to prevent it from flowing freely. She pulled her sleeping son’s shirt up to show me the line. It wasn’t as bad as the first one Liam had in, but it still made my stomach lurch. A flood of memories of changing the dressing for Liam’s first line came flooding in. The tears. The fighting. The restraining. The fear we weren’t being sanitary enough. The fear both Larry and I lived with that we weren’t doing it right and potentially causing irreparable damage. The frustration for Liam not being able to take a bath or shower. Having to be super careful that Ella didn’t see the tubes and yank on them out of curiosity. She told me it really wasn’t that bad. But it was still not what I wanted.

Liam woke up and wanted to know when we were going. I broke the news to him that he had a temperature. Even Liam knew a fever wasn’t good. “Oh no, Mommy, not a temperature. That’s not good.” He didn’t say much when I told him that we were going to have to spend the night. I explained that there were germs hanging out on his button, a special kind of germ called bacteria. He kept asking over and over why germs liked his button and how they could build houses on his button. Daddy finally arrived for moral and emotional support as well as fresh jammies. And then we were off to room 25B, the same room in the same bed we stayed in for several stays including our neutropenia stay this summer and in the same room we were in during our last stay. But this time we were going to be sleeping in the bed the noisy Chinese family we had so many issues with during our last stay slept.

We settled in for a quick stay. Our neighbors who were staying on the side of the room we checked out of on September 11 included a mother, grandmother and baby. A giant yellow cage-like crib replaced the hospital bed that’s normally in the room. The cage cribs are really frightening looking to me. Liam checked out the goodies Daddy brought. We discussed with the inpatient team the game plan. I started the process of explaining to Liam what was going to happen tomorrow. This was a totally unexpected stay and I could tell he was still trying to process it. As is Liam’s style, he was being a good sport something I was so proud of but also loathed that he had to be a good sport. Dr. Kayton stopped in to check on us and give us a surgery time. It was the first time Larry had a chance to talk with him. I heard him repeating the same information he went over with me and I could also see Liam getting agitated. The one thing I didn’t remember hearing is that it would be at least a 45 minute procedure. I walked with Dr. Kayton down the hall as he was leaving and lamented the fact one more how badly I felt about having to put Liam through this experience. He looked at me and said in a very measured voice with a touch of bewilderment, “It seems like you’re particularly attached to this port?” And I again found myself explaining that Liam’s health was my number one priority, as I knew it was for everyone at the hospital, but a close second was his mental health and a temporary line was something I just so wished he didn’t need to go through.
Daddy left to go home to be with Ella but not before making a giant tissue paper pumpkin for Liam in the tiny play room. Liam squeezed puddles of glue on construction paper and then covered them with blue sparkles that went everywhere while Daddy worked on the pumpkin. I gingerly talked with Liam about getting his button out the next day and explaining the concept of the temporary port on the opposite side of his chest. I didn’t want him to be scared or freak when he woke up and felt something in a place he’s not used to feeling things. I checked on the status of the blood culture taken the night before which, so far, was not showing gram negative rods. I was told that if he did have gram negative rods, they would have shown up by now. It was a huge sense of relief. A sepsis infection was something I wanted to stay as far away from as possible. Liam went to sleep with my arms wrapped around him in the bed with the blue plastic mattress neither of us liked. Throughout the night as Liam’s vital signs were taken, I kept waiting to hear he had another fever…but he stayed fever free which gave me great relief. Maybe the combination of antibiotics was working. Just before the night nurse left at 7 in the morning, she came in with a small pouch of medicine that needed to go into his IV. She volunteered that his coagulants were off slightly and he was going to get a dose of vitamin K. I joked with the nurse that something on this side can be off ever so slightly and the immediate reaction is to throw something at it. But vitamin K sounded innocent enough so I wasn’t going to fight or question it. Clotting is good thing to have during surgery.

In the morning, Courtney, one of our favorite nurses greeted us. She was surprised to see us and while happy, disappointed we were back on the floor. We talked a bit while she fiddled with the IV infusions. She hooked up the vitamin K and as she was finishing, Liam announced he had to go stinky. He didn’t have socks on so I carried him into the bathroom and had him first stand while balancing on the toilet seat while I took off his jammies and then lifted him to place him on the toilet seat. He asked me to leave so he could go stinky alone and close the door…all the way…behind me. Courtney and I chatted while Liam did his business. I checked on him – “Everything OK?” “Yes, Mommy.” “Are you finished?” “Not yet!” – and was reminded to close the door all the way. All of the sudden Liam started saying his tummy hurt. I popped my head in and said it probably hurt because he hadn’t eaten since Tuesday night. He told me it really hurt. And then he said, “I’m going to throw up!” I opened the door and let him throw up into the empty trash can. He finished throwing up yellow bile and I wiped his mouth off. I asked if he was finished and he told me no so I left the bathroom. Courtney and I looked at each other with puzzled looks wondering why he had thrown up. Liam started saying, “My cheeks feel funny. Mommy, my cheeks feel funny. They feel really funny.” What? His cheeks feel funny? What in the world? I opened the bathroom door, Liam lifted his head to look at me. His face was completely distorted and bloated to the point I barely recognized him. His lips were so swollen they looked like they were going to explode. I turned quickly turned while crouched in front of Liam, looked at Courtney and said, “he’s having an allergic reaction!” She looked at Liam and ran out of the room. He started to throw up again. As soon as he was finished throwing up I lifted him off the toilet and wiped him while holding him and carried him while pulling the IV pole over the big bump at the bathroom door to his bed. “Mommy – My pace peels punny….Mommy…My pace peels punny.” His lips were so big he was having a hard time talking. They were stretched so much that all color was gone. His ears were so swollen that the skin looked almost translucent. His eyes were slits. I held him in my arms while he alternated between talking about how weird he felt and screaming in pain that his stomach hurt. The level of pain he was in was greater than antibody pain. I called Larry quickly at home to tell him Liam was having an allergic reaction and I needed him there now. Residents and nurses came running into the room. Orders were barked to get him Benadryl. A dose was pushed directly into the line to get it in as fast as possible. Steroids also went into the line. Oxygen was brought over and a medicine to keep airway passages open was added. Liam started complaining about breathing being more difficult. I felt myself levitating over the scene looking down at what was unfolding. It didn’t seem possible. He had received vitamin K before. He took a pill of it the last time he was inpatient. I surveyed the room of people. I asked where the attending doctor was and was assured she had been paged and was on the way. I wanted her there as soon as possible. She didn’t arrive. Liam didn’t look better. His screams were more intense. An alarm on the machine that registers heart rate and oxygen saturation levels sounded. A nurse came over to try to fix it which meant fiddling with a piece of tape connected to a sensor that wraps around either a finger or toe to monitor the amount of oxygen in his blood which indicates if he’s breathing OK. The machine beeped five quick beeps in succession, paused, and then beeped again. An order for the Epi pen was issued. Courtney and another nurse were over at the counter by the sink fidgeting with something. I could hear them trying to talk quietly but could hear what they were saying. “It went off?” “Yes!” “In your hand?” “Yes!” “Are you OK?” I saw Courtney run out of the room. “Where’s the attending?” “Where’s the attending?” There were five residents standing in front of me staring at Liam. None of them moved. None of them said a word. The doctor working directly with Liam wore the same white coat as the residents so I couldn’t tell if she was a resident or a fellow which is the next level up on the chain of command. She kept telling me in an irritated and exasperated voice that the attending was on the way and had been paged. “Page her again,” I said. She didn’t do anything. “Send someone else to get her! None of the residents are doing anything…send one of them to track her down. I want her here NOW!” One of the doctors left. Liam was screaming at the top of his lungs. His face was swelling even more. His upper lip was so large it touched his nose. His lower lip jutted out past his chin completely changing the landscape of his face. He didn’t look like my child any more. He was screaming in pain. The residents just stood there. Courtney came back into the room with another Epi pen. The pen was taken out of the box. Liam saw it and panicked even more. “NO…NO…NO…NO!!!!” “Liam – We HAVE to! I’m sorry, honey, but we HAVE TO!” I pulled on the sleeve of his jammies to get his arm free. He yelled at me and fought as hard as he could. “NO! NO! NO!” I got his arm out. Someone said that normally they’re administered in a leg, not arm. “Can it be done in the arm?” No one answered the question. It would be impossible for me to get his leg out of his jammies while trying to restrain his flailing arms and legs. I could hear Courtney giving the doctor instructions on how to use an Epi pen over Liam’s screams. She had never done one before. “Make sure you hold it in for at least 10 seconds.” “Where’s the attending?!?” I was now shouting over and over. I was scared. A nurse was trying a different machine to monitor his heart rate and blood oxygen levels. It also wasn’t working. And for a brief moment I allowed myself to think the unthinkable about what was happening in front of me. Liam screamed in agony at the top of his lungs. I held him tight. The Epi injection was given. It made a strange sound like the top of a super carbonated soda bottle shooting off. Liam screamed a new scream. It hurt. He was pissed. “WHERE’S THE ATTENDING!” “WHERE IS THE ATTENDING?” More than 20 minutes had gone by and no attending doctor. Larry kept calling and I would answer the phone and talk if I could but more frequently would just let him hear what was going on in the room with his precious baby boy. Liam’s screams about his tummy hurting were nonstop. He was in agony. “WHERE IS THE ATTENDING?” “IF SHE DOESN’T COME NOW I’M GETTING UP AND CARRYING HIM TO HER.” The doctor kept assuring me she had been paged. She had been paged. She didn’t come. I stood up from the bed with Liam in my arms. “GET HER HERE RIGHT NOW OR ELSE I’M WALKING OUT OF THIS ROOM TO FIND HER WITH LIAM!” Liam’s screams of pain continued. “WHERE IS THE ATTENDING WHERE IS THE ATTENDING WHERE IS THE ATTENDING!!!” A second Epi pen injection was being discussed which made me wary. I’m certainly no expert on Epinephrine, but a second injection within an hour was something I had never heard of. I was even more anxious than ever for the attending with her experience to be a part of the decision making process. A doctor rushed in who I recognized and who recognized me. She was the one with the friendly face who looked like someone I would be friends with if we met under different circumstances. Our eyes locked and I felt like she communicated in one look, “Oh Hi! It’s you…I know you…and Liam…what are you doing in here…what’s going on?” Our conversation was quick and urgent. “Where have you been?!?!” “I just got the page less than two minutes ago and ran here!” “This has been going on for a long time!” “I came as soon as I got the page!” “Make the pain go away…he’s in agony!” I really like this doctor and feel comfortable around her. We talked fast with each other but neither of us were angry, just trying to take care of Liam. I heard her make a request in a calm voice for some Morphine. Courtney ran from the room again. She wanted to know why his heart rate and pulse oxygen levels weren’t being monitored. The residents continued to stand in a wall of white coat silence. The doctor who had been dealing with us gave her explanation as to what was happening. Courtney came back into the room with the morphine and it was injected straight in the line. And finally, more than 35 minutes after the awful episode started, Liam got some relief. Within minutes, he fell asleep. The attending stayed focused on the situation. Liam’s face was still completely swollen but he was breathing well and his heart rate was down. I heard someone say that surgery had been called. I looked at the clock. His surgery time was quickly approaching. Then I heard that surgery was postponed. “Anesthesia won’t take the risk of putting him under when his throat was take him under these conditions.” I was crushed. If surgery was delayed until the next day, Halloween, he surely wouldn’t get out and would be celebrating the holiday he had been so looking forward to in the hospital. No. No. No. And then I looked up and there was Dr. Kramer. She had come to see what was going on and I was grateful to see her. I wanted to know what happened. Clearly it was a reaction to the vitamin K infusion. It’s very rare but one of the side effects was extreme abdominal pain. This is exactly why I wanted the attending in the room. My mother instinct told me the residents didn’t know that was one of the side effects so they let my son scream in pain and agony without relief for more than 30 minutes. Dr. Kramer left to return to the day hospital and start what I’m sure was going to be a long day seeing patients. Larry walked in which was a huge relief. We discussed with the attending doctor Liam’s situation, our concerns about rushing into surgery but also not wanting to take any risks, shared with her that Liam had been playing in dirt, he had a clean blood culture 10 days after he stopped taking antibiotics after his last bacterial infection, discussed his white blood cell count being back down to normal levels, and looked at how long it had been since he had a fever. There was a part of me that kept asking myself what I was doing…in light of the fact that it was the same bacteria and knowing how bacteria likes to cling to medical ports, it all seemed to make sense that this was a straight forward case. But I just couldn’t let go. She listened and then suggested that a consult with ID (infectious disease) would be prudent. Larry and I didn’t know that infectious disease could be called to consult on cases but we immediately welcomed the idea. In the interim, surgery was rescheduled for Friday at 12:30, the earliest they could accommodate us. She assured us that infectious disease would be back to us before the end of the day. We spent the rest of the day watching Liam like a hawk for any lingering effects. Liam kept asking us why his face blew up like a pumpkin. He wanted to understand what allergic reactions, a new term for him, were all about from what caused them to what happened to a body when it was having an allergic reaction. Later in the afternoon, one of the residents came to check on Liam. I am not proud to say that I felt like a mother lion not very willing to allow my child to be checked by a doctor who I was still angry with for waiting for what seemed like too long to me to get the attending in the room. She was not on my good list. Liam, though, seemed fine although still very puffy. He wanted to eat – a good thing – and spend time playing with the giant bottle of blue glitter in the “tiny playroom.” And most importantly, he had gone 24 hours without a fever…a very good thing. We were in the room and Courtney came in with some medicine to hang on his pole. It was Visteral…a medicine similar to Benadryl which make Liam sleep for hours at a time. It had been more than six hours since his allergic reaction and I didn’t understand why we were adding a new medication that would make him sleepy. I went to discuss with the resident who prescribed the medicine if it was really necessary considering it had been hours since his allergic reaction. It was the same resident I wasn’t happy with. The attending heard our conversation and said that Liam didn’t need it. There was a part of me that felt badly for the resident...she was in a losing situation with me because she lost my trust and confidence. I went back to the room and Fireman Tommy was there to visit his buddy Liam. The two of them were on their way to the playroom. Two women from infectious disease arrived. It was a fascinating conversation. Yes, the type of bacteria Liam tested positive for was the same kind he tested positive for on September 3rd. But, the type of bacteria is not one that causes high fevers like Liam had. It also was one that doesn’t typically colonize in a port. And it’s the same type of bacteria they were having contamination issues with and had even set up a task force to try to identify the source. They also reported that Liam’s second and third blood cultures were so far negative was another indicator to them that the first culture was a false positive. They felt the port was fine, it didn’t need to be removed and he should be taken off antibiotics and discharged. It took me a minute to understand what they were saying and the implications. Wait…let me get this straight…we probably haven’t needed to be here? And let me get this straight…if he hadn’t gone into anaphylactic shock from the vitamin K infusion he would have had a surgery he didn’t need to have? So, again, let me make sure I understand…he could have just been plain old sick just like a regular child? And then I made another realization…if this bacteria was the same one he tested positive for in September, then it was possible the scare we had and the two week course of antibiotics every six hours could have been avoided?? Really?? Oh goodness. OK…cue the mix of emotions. I wasn’t sure exactly how I felt…relieved that he didn’t need to have his port removed but frustrated that our three-week break had been interrupted. The resident caught up with the team in the hallway to get an update. I heard the team tell her the same things. I checked on Liam in the playroom with Fireman Tommy and all was good. I saw the attending sitting down near the reception desk reviewing patient cases with the pediatric fellow who was coming to relieve her for the night. I immediately recognized the fellow as one we knew and liked and who was always joking with Liam. The attending asked if I had seen the infectious disease team yet. I told her what they had told me and the resident who was standing close by confirmed my report. We discussed Liam’s discharge which would likely be on Friday just to make sure there were no lingering side effects from the vitamin K experience. While I was away Daddy cleaned up the tornado of toys that had swept through Liam’s small room and hung his Superman costume on the medical paraphernalia that serves as the headboard for the bed. We said good bye with a sense of relief of having dodged a bullet. A team of volunteers stopped by the room to decorate it with Halloween goodies. Liam was beyond thrilled and decorated every inch of wall and even hung a huge banner of carved pumpkins on the curtain that separated us from our neighbors. He jumped from his bed to the two-level cart of Halloween decorations picking out things and directing where they should go, all while attached to an IV pole. I saw Tori’s Dad just down the hall from our room and got an update from him. He looked good considering his 14-year old had been home about four of five days since being diagnosed on August 8th. I could hear Tori calling for her dad to come help her. The once talented athlete now can’t walk but she still has spirit. Her voice sounded just like any teenage girl’s voice slightly annoyed with her father.

The attending stopped by the room to say good night. We talked a bit and she suggested that just to be on the safe side, Liam not have anything to eat or drink after midnight in case something changed and he did need to go to surgery. I didn’t like hearing those words but fine, we’ll do it but in my head I thought, “he’s not going to surgery.” Liam and I went to bed and I woke up each time his vitals were taken during the night to make sure he didn’t have a temperature. Instead of having a high temperature, it was now super low, 95 degrees. The clerk came back several more times to check it and it stayed at the same temperature. And then I realized that his side of the bed was completely soaked with pee. The IV fluids overloaded his bladder capacity again and he had peed in bed. He was lying on his side and everything except the arm that was on the upside was soaked. And the blue plastic mattress made everything even colder. I had to get him up, take off his jammies, wipe him down with a wash cloth, try to convince him to be quiet so we didn’t wake up our neighbors, remove the sheets, wipe the plastic mattress with alcohol, make the bed and get him back in it. He waited for me in the dark curled up in the armchair in the room and complaining his feet were falling off the chair. And when he got back into bed and realized that his puppies and pillow and soft yellow blankie weren’t there, freaked. His favorite guys were all soaked, literally dripping, with urine and needed to be washed. With his permission, I took them to the laundry room on the floor for patients and their families and washed his favorite guys. Liam eventually fell back asleep but his temperature only rose a few tenths of a degree. As the first rays of sunlight hit the room, the nurse came in with a blood culture bottle. The fellow was concerned about Liam’s low temperature and wanted to take a blood culture. I dreaded that collection and asked that it be delayed until Liam was awake. Liam woke up and told me he was hungry. We went to the kitchen, he had a yogurt. He wanted a second yogurt. I gave it to him and as he was finishing up the second yogurt, I remembered he wasn’t supposed to eat or drink anything just in case he needed surgery. Oopsie. We went back to the room. He put on his Superman costume. There was Halloween excitement in the air with lots of hospital employees dressed up. Liam wanted to fly in his Superman costume but flying was difficult when you’re attached to an IV pole. I asked if he could be disconnected so that he could run. We got the OK. He flew around the race track circuit on the floor. He was full of energy. We moved to the playroom where he built a Superman fort. The resident came in to tell us that surgery called and they were ready for him. I told the resident that I was waiting to have a conversation with Liam’s team and the attending given the feedback from infectious disease oh and, by the way, he ate two yogurts for breakfast so he couldn’t go to surgery any way. It was a tense conversation. “What do you mean he ate?” “How could you think I was going to let him go to surgery without further discussion?” She left and came back to say they were waiting for one final test from infectious disease regarding sensitivity and what antibiotics would and wouldn’t work with the type of bacteria he tested positive for. A Halloween parade was forming. Liam bounded around in his Superman costume running back and forth past the parade of walkers and wheelchairs. He ran to the front of the line to walk with his friends from child life leading the parade. He collected candy. He squealed with excitement. He didn’t look like he should be there. But he was. We ran into two of the nurses from the POU, Sloan-Kettering's intensive care unit, dressed as bat girls. They called out to Superman Liam and told me they were anticipating seeing us yesterday. They had heard about the pumpkin head incident. Hmm. The resident told me they were approaching our room during rounds. We went back to the room and waited. There was a new attending on duty. I ran into her in the hallway and she introduced herself. And then she told me the antibiotic sensitivity was back from infectious disease. The findings were that the two antibiotics Liam was being given would not work with the type of bacteria he tested positive for which seemed to confirm the theory that the first blood culture was a false positive. I stood there shaking my head. I was happy, of course, to hear this but so disappointed for him that we had to take this roller coaster ride, miss three days of school, and lose precious hospital-free time. Her feeling was to follow the recommendation from infectious disease. But, because Liam did have a high temperature and a high white blood count, she felt the prudent thing to do would be to send us home on antibiotics. I asked her if it was an IV antibiotic and thankfully she said no, it came in pill form. We were out! It was 2 p.m. We packed up, left the hospital wearing his Superman costume, went home, dropped off our bags, and went straight to the Halloween party at Apple Seeds where Ella was attending dressed as a witch. As we walked in, Ella was in her stroller on the way out. We all reunited with lots of hugs and laughs. That is how quickly we went from one world to the other. Liam played, reveled in being a kid, and had fun. We moved into a room where a concert was going on and sat in the front of the room. Liam and Ella divided my lap. The singer sang. Ella danced. Liam kept running to the back of the room to get cups of pretzels. He ate nonstop. The singer asked if anyone wanted to help him sing. My son who melts with stage fright during school recitals, jumped up first and went to the singer. He took the microphone and sang clearly and loudly the alphabet song. That’s my son.

A note to my son: Liam, in 20 years when you’re reading this account of what happened this week I want you to know how proud I was of you and how disappointed I was that you had to do hospital time. You are my hero and you once again made the best of the situation. You always do and for that, I love so, so, so much.

A note to my daughter: Ella, in 20 years when you're reading this account of what happened the week of Halloween, know how much Liam and I missed you and talked about you. Nothing was right without you with us. You are the sunshine and I love you so, so, so much.

Rip Tide

October 26, 2008
Rip Tide.

Too many years ago when I was in my early 20s, living in Virginia and going to the Outer Banks beaches as often as possible, I had an experience with a strong rip tide that scared me to the point that even today I’m still extremely cautious about swimming in the ocean. On a gorgeous September day, my favorite beach girlfriend and I walked to the beach from the lime green cinder block house we had rented with the requisites in our beach bags: Diet Coke, Pennsylvania Dutch style pretzels, books, Walkmans (this was well before the age of the iPod), baseball hats, sunscreen, towels and beach chairs. We were the kind of gals who spent the entire day, until the sun set, on the beach. We didn’t turn our chairs to face the sun, we put our chairs in one spot and let the sun rotate around us. We liked going to the beach in September because there were very few people on the beach during the school year and we were “serious” beach goers who liked peace and quiet. On one of our beach days, I took a swim by myself to take advantage of the warm ocean temperature. As I floated along, watching porpoises jumping off in the distance, I noticed I was drifting out and away from shore a little faster than I expected. I started swimming back to shore and quickly realized I wasn’t getting anywhere. I tried harder. And harder. I started to panic and swam as hard as I possibly could. But the harder I swam, the further from shore I seemed to be. By the time I realized I was trying to swim against a rip tide, I had used up most of my energy. I could see my friend on the shore sleeping with her book on top of her face and all of the sudden felt quite alone. I realized I could drown and no one would know. I could just be swallowed up by the ocean and literally no one would realize. OK. OK. Think. Calm down. A rip tide can be overcome. Start swimming along shore. Don’t try to reach it…just keep it in sight. Relax. You’ll get there. And eventually I did arrive on shore with my beach chair so far away I couldn’t see it. But I was on shore and grateful. I sat on the sand, exhausted, looking out at the water and shivering. Just writing about the experience, which happened more than 15 years ago, makes my heart race and the blood in my body feel like it’s draining out. It was that strong of an experience.
Liam’s return to 3F8 treatment felt like a rip tide. From the onset of pain on Monday until Saturday night at 10 pm, it was nonstop moaning, groaning, vomiting, “Mommy – Hold me!”, “Mommy – I need another little white pillow” (what Liam calls Dilaudid which I’ve heard is stronger than Morphine) week of owies, fasting, and wanting to be curled up in a fetal position in the dark. In the more than 20 months since Liam was diagnosed, he has never asked for a pain pill. He begged for them this week. He begged me to show him where the hands on the clock needed to be, even though he could barley focus on anything from all of the narcotics, before he could have another “little white pillow.” His hands and feet tingled in an intense pain that is similar to when a body part falls asleep and starts to wake up but intensified exponentially. “Rub me,” “Don’t rub me.” “Rub me softly,” “No, rub me quickly…faster, Mommy, faster.” “Don’t rub me there.” “Rub me here.” “No, not there, here.” “Mommy – It hurts!” Daddy was pretty much rejected all week. Ella was not even allowed in the same room by Liam’s decree. Liam would wake up in a panic in the middle of the night that he was going to wet the bed and tell me to carry him “quickly, Mommy, quickly!” to the bathroom where I would have to place him on the toilet and then stay close enough for him to rest his head on my shoulder. His pee had the worst smell to it all week. One night he saw grandma sitting on the ceiling next to his cup of water. I had to stand on the bed, reach up and grab the cup of water in order to appease him. After Monday’s breakfast, he didn’t eat. And when I say he didn’t eat, I mean he didn’t eat…a thing…nothing. Everything he put in his mouth tasted bad…a side effect of the narcotics. He would try something and then cry in frustration when it tasted like medicine. He would brush his teeth in bed over and over and over again using two cups – an empty one to spit in and a one with water for swishing - to try and make the taste go away. He would brush and then try eat something and then cry because it still had the “medicine taste.” He didn’t want to drink because he was afraid it would make the owies in his tummy worse or it would make him throw up. By Wednesday his glucose levels were so low that I was encouraged to give him sugar on a spoon, which he ultimately refused but allowed me to give him a few bites of ice cream which he declared was icky. We also started 24-hour doses of intravenous Zantac to protect his tummy from all the acid in it and alleviate the new feeling of discomfort. “Mommy – my tummy feels funny.” “Is it owies?” “No – it’s not owies, it just feels funny.” It was a really, really hard week. It was hard not to get upset at the people who would peer into Liam’s stroller as I was trying to catch a cab or shuttle him to/from the apartment to catch a peek at the child who clearly was too old to be curled up in the fetal position. I tried to ignore their stares at the bald headed little boy with the puffy face, but I saw every one. I hated it. I just wanted to protect my son. I wanted to jump out of the cab when one driver kept turning around while driving to stare at Liam. I finally had to ask him very firmly but politely to please keep his eyes on the road. But Liam’s spirit, as always, couldn’t be dampened. Even in his narcotic haze, he would tell me in a very weak sounding voice to go to the other corner to catch a cab because I’ll have more luck. He wanted to make sure the cab driver was going up 1st Avenue or the FDR to avoid traffic because traffic would “make us late for the hospital.” He wanted to be carried everywhere. I had to lift him from the stroller and place him in the back seat of the cab as gingerly as possible as he grunted and moaned. He wanted his eyes to be shaded. He didn’t want the TV on. He didn’t want any noise. He just wanted to be quiet. All week we could see the shore. We knew it was there. We just needed to let the tide float us along until we could get back on solid ground. Liam’s shore was school. My shore was to see him being himself. It was agony watching my little boy listless and in pain. It made me feel like the worst parent in the world for putting him through it but also grateful to know he was receiving precious antibodies that there never seems to be enough of for all the children who need it. And in the morning when it would be time to go to the hospital, Liam never once said no, he didn’t want to go or complain. Instead he would want me to keep him posted on how long it would take me to get ready and encouraged me to hurry up. The best part of the week was not having to do a shot on Friday morning. His ANC level (the type of white blood cells that are the fighters) was so high he didn’t need the 10th shot. But by Friday, he was so exhausted and out of sorts I’m not sure he even cared.
We’ve spent the last week on shore recovering from the experience and grateful to be on solid ground. We haven’t talked once about the hospital and have immersed ourselves in “normal” – being an exuberant preschool student and loving brother with a hint of mischief. Liam’s hair seems to grow in front of our eyes which excites and delights us. We were very grateful that his eyelashes didn’t fall out from chemo like they did last time. This time they didn’t fall out until there were new ones underneath to push them out. So right now his long, luxurious eyelashes are teeny, tiny little eyelashes…but they’re there which is all that I care about. Larry and I are in endless “catching our tail” mode working during the day and then a second shift at night. The night shift is reserved for Cookies for Kids’ Cancer work and reading cancer research news. There’s never a night one of us and most of time both of us have our computers out working. We’re going to do holiday cookies again, but this time have committed to 120,000 cookies vs. the 96,000 we did last year. (Anyone looking to not only be a good cookie but give a good cookie this year for everyone they know? Remember…they’re tax deductible!) So for now, we’re enjoying the respite and trying to live, as always, as much in the moment as possible and enjoy our time on shore.

Wait - Haven't we been here before? Day 1, Round 1, Second Go at Antibodies

My lost post vanished into cyberspace so now I need to be very brief so that I can get back to some pressing work.

Today was the first day of antibodies, Revisited. The day started with an 8:15 a.m. arrival at the hospital, we left at 6:15, and at 10:15 p.m. Liam is uncomfortably resting on the couch curled up with his Batman blanket (thank you Martha and Sisters), super soft yellow blankie, puppies and pillow. He's in extreme discomfort and has taken the max amount of pain killers he can take until 2 a.m. He's grunting, moaning, yelping, whimpering and crying. OK. This is hard. There's nothing I can do to relieve his pain except whisper to him that the pain medicine should be working in just a minute.

The day has had all the usual assaults on the body and senses associated with a first day of a new treatment at the hospital including finger stick (which requires negotiating and then restraining), accessing his port(which involves negotiating and restraining) and hearing the agonizing cries of other children as they deal with whatever their treatment is calling for on this particular day (which involves lots of explanation to Liam's questions about why other children are crying). Remind me again why we spend so little money on children's cancer research? Can I please ask the share holders of pharmaceutical companies if they would want the same pharmaceutical companies looking for cures, even if those cures wouldn't ever be multi-million dollar profit centers like other drugs or if they would want those companies to continue to turn a blind eye to all children? OK. OK. Fine. I'll stop. In the interim while I take care of my baby who Ella is so worried about, visit the Cookies for Kids' Cancer website (www.cookiesforkidscancer.org) and plan a bake sale.

Day 1 sort of over. Four days left.

Liam and His Guys II

I'm working on an update but everyone should feel good about where we are right now. Liam's looking great and doing great. He is beginning a week of antibodies on Monday, 10/13, which probably means he'll miss a week of school which is a bummer. The good news is after a week of antibodies, he'll have a three week break. (Three whole weeks off from the hospital...what will we do?!) We've started the daily injections that are part of the process, something he understandably despises receiving and we hate giving. While I finish up the next update, which is tentatively titled "Am I coming or going?" to reflect the crazy nature of our lives in recent months, we wanted to share with you a very special picture that was taken two days after Liam's surgery in mid-July. Liam's "guys" are such an integral part of our lives that at this point they're family. We love them and their support. When I look at the picture, I realize how much I miss his hair. I miss it so much it hurts. But what I also see is Liam's spirit shining through which makes my heart smile. Today he had a play date with Taber, a little girl in his class with long, beautiful brown hair. Taber is a new friend and equals Liam on spirit and energy, something I didn't think possible. As I was playing hide and seek with Taber, Taber's Mom and Liam and listening to squeals of anticipation and delight, just for a moment I felt "normal" and like a mom instead of a warrior mom. I don't want to be a warrior mom. I really don't. I just want my son and I don't want any more pain for anyone else. Leave the pain for adults. Let's protect our children from pain as long as we can.

I’ll be loving you always.

Note: I’ve been trying to finish this post for too long, but the super-warp speed that is our norm cranked up a few notches with the start of school for BOTH of our sweet babies, an unexpected and hastily scheduling of scans and bone marrow tests, radiation simulation, radiation practicing and then the beginning of 11 days of twice daily radiation sessions before and after school. Our apologies for keeping people hanging. We are always trying to keep the balance of our responsibilities to Liam and Ella in check with hospital time, work commitments and philanthropic activities. There’s never enough time in a day and days are never long enough. But even with days that seem to be moving at the speed of light, we very consciously try to savor each and every smile, discovery and ordinary moment like enjoying a bowl of ice cream or using flash lights to look for toads and crickets in the dark.


September 10th

We’re home! We’re home! Liam’s white blood counts shot up from 2.2 at 5 a.m. on Tuesday morning, to 5.6 when we drew his blood for a CBC at 8:20 p.m. that evening. Adrienne, Liam’s incredibly sweet and competent evening nurse, was so excited for us she tracked us down in the playroom to let us know about the jump. I wasn’t surprised. I had a good feeling it was on the way up. We knew that with a white blood cell count that high his absolute neutrophil count (ANC) would probably reach the golden .5 mark, our ticket out of the hospital. We waited. Liam talked about how much he wanted to go home. He kept telling me, “Duck Puppy and Monkey Puppy really want to go home. They hate being here.” Yes, dear Liam, I hear you. You hate being here. I know. I know. I’m trying to make this as bearable as possible, but I know it’s not where you want to be spending time…precious time.

It was the evening before the first day of school. Liam desperately missed school and talked about his friends and his beloved teachers almost every day. One of the activities that got us through the slow tick of a hospital clock was looking at pictures of his school year and classmates. He would tell a story about each and every person but they all ended the same way, “I love him” or “I love her.” He adores school and I wonder if one of the reasons is because it’s a completely different world than the hospital world and it’s a “safe place” for him without any “pillows” (aka pills), shots, or finger sticks. I also, though, think it has to do with the fact that it’s consistent. In the hospital world, a child Liam plays with one day will probably not be there the next because of different treatment schedules. There are no solid relationships with other children that can be formed which can be challenging for a child who is at the stage of learning some of the key developmental milestones. He craves consistency and that is something he found at school. On the day Dr. Kushner presented the roadmap of what Liam’s treatment would entail after his July 18th surgery, we asked him if Liam would make his first day of school. He said it was doubtful but that he’d probably make it within the first few weeks. I made up my mind that day that we were going to do everything possible to get him there on “opening day.”


Adrienne called the lab to speak with a tech who was manually counting the number of absolute neutrophils to let her know we were waiting. Yes, in this world of automation there are still some things done manually…like counting precious neutrophils…one by one. We waited. Finally, finally…after eight long days in the hospital we got the news we had been waiting so many hours and days to hear….his ANC was .8 and we could go home! (Cue the fireworks and pop the champagne corks!) As we were going about gathering things, we saw Linda who is one of the nurse practitioners on the neuroblastoma team who works over on the Day Hospital side. It was late…about 9:30…and Linda had been at the hospital since the morning. Even though she had put in a very full day, it wasn’t surprising to see her late into the evening. Everyone on the neuroblastoma team works insane hours and of course Linda would be there after 9 p.m. checking on a patient on the sleep over side of the 9th floor. She asked if we were doing “the balls” when we got home. Me: “The what?” Linda: “The balls to give him Vancomycin at home.” Me: “The balls? No one mentioned them to me.” Linda: “They come from home health care. Do you have home health care set up yet? If you’re going home, you have to have them set up so they deliver the Vancomycin to your home.” Me: “Home health care – I’ve never heard of it and don’t know anything about it.” OK – Cue the scratching of a needle across a record and recork the champagne bottles…clearly there was a communication breakdown. Because of his positive blood culture for bacillus, he needed to stay on a 14-day course of IV antibiotics that are administered every six hours over the course of an hour. Arrangements need to be made well in advance of a patient’s discharge to have the medication and all of the paraphernalia that goes along with it timed to your arrival home. Home health care includes a visit from a nurse who instructs how to deliver the medicine, flush the line that goes directly into Liam’s heart, the proper way to Heparin lock his port, and other instructions on what to and not to do.

Both Liam and I were crestfallen. Liam kept asking over and over, “if I have lots of white blood cells, why can’t we go home?” After all that work, he was going to miss the first day of school.

We spent one last night in the noisy room. After seven nights, we developed a forced rhythm of respect with our neighbors, although it was a treaty that could be broken at any time.

Wednesday morning and the first day of school, but also the day we were scheduled to meet with the radiation oncologist for an exam and needed to get the home health care arrangements set. I didn’t tell Liam it was the first day of school. I didn’t want to disappoint him. The radiation oncologist’s fellow, Leslie, came to examine Liam. The exam consisted of identifying the tattoos on his stomach and sides, the ones Liam thinks are freckles, and then going over the game plan of what was going to happen which was a conversation reserved for the hallway. We talked while Liam patiently bided the time by watching Bob the Builder. The radiation oncologist, who I last saw at a pediatric cancer fundraising event held at FAO Schwarz in March, joined the meeting. The discussion included talk about how radiation permanently damages kidney tissue and that this was a second pass of radiation for Liam’s already damaged right kidney. Kidneys can function with only 1/3 of their capacity so the thought is that the kidney will still be functional. But, I was reminded for the umpteenth time that people can live with only one kidney. (I know, I know…but it’s not what I wanted for my baby boy at such a young age.) Liver tissue will be hit by radiation beams because a small portion of the liver is in the radiation field. Luckily liver cells regenerate. (OK – I can handle this.) But the most important information learned during the meeting was that the 1 cm x 1 cm spot of 95 percent “junk” with a very few cancer cells in the center was NOT in the original field of radiation. This was huge news and not what we had been told back in July. I asked her to look at his chart and be sure, absolutely sure. She did and she was. This was HUGE news and much, much better than finding out the unwelcome visitor was in the original field of radiation…which would indicate his original dance with radiation didn’t work. We ended our conversation and finally…finally…after eight very long days and nights in the hospital we were free to go home…after his noon dose of Vancomycin

When we finally left the hospital 1:30 p.m., Liam and I stepped out into the fresh air on a perfect September day and reveled in the feel of air swirling around our faces and the warmth of sun on our cheeks. There is nothing quite like being outside. It’s nothing short of glorious. You realize how air outside smells like air…not air that is cleansed and purified. There’s also nothing quite like leaving the world of beeping pumps, small rooms and the smell of fear behind. The specter of death is way too close for comfort on the 9th floor.

In the cab on the way home, Liam leaned his head back on the seat, asked me to open the window, closed his eyes and felt the wind on his face. He was very quiet and I could tell just grateful to be out and on his way home. We were home for less than two hours before having to go back to the hospital for his next dose of antibiotics since home health care wasn’t arriving until 9 p.m. All of the sudden I started realizing that administering antibiotics for an hour every six hours might seem like no big deal, but it was going to be a huge time drain. While we were at the hospital receiving the 6 p.m. dose, we ran into one of his doctors who asked if scans had been scheduled. They hadn’t but I had a feeling they would be shortly.

And now is when the schedule gets really crazy.

Wednesday, September 10th – Monday, September 15th
Antibiotics every six hours at 6 a.m., 12 p.m., 6 p.m. and 12 a.m. Each dose was a two+ hour process of taking the ball-shaped dose of antibiotics that was pressurized to push the antibiotics in without a pump out of the refrigerator an hour before to get to room temperature; hooking up the antibiotics to Liam’s port at the appointed hour which was always a nerve-wracking experience knowing the importance of cleanliness and preventing air bubbles from entering his central line which could cause irreparable damage to him (I’m not even going to mention what could potentially happen but it’s not good); disconnecting him after all the antibiotics were pushed into his line which sometimes took an hour and others an hour and a half if he rolls over on the line while sleeping; cleaning the port and then flushing with saline; and cleaning the port and “locking” with Heparin to keep the port open and ready to access six hours later. During the midnight and 6 a.m. doses, I got to the point I could do it so stealth-like that he would rarely wake up. During the noon and 6 p.m. doses, Ella would often serve as the antibiotic ball carrier so that Liam could do whatever he wanted to do without being restrained. At one point Liam discovered his scooter was an excellent transporter of not only him but also the antibiotic ball, a discovery that we quickly curtailed with the fear of him falling and ripping the line out of his chest.


Thursday, September 11th
Liam’s first day of school. He missed the true first day but was there on the second. And as we walked in with all the other preschoolers buzzing with excitement, I was nervous for him (would anyone notice his lack of hair and if so, would they say anything?) and stuck in the significance of what a triumph it was for us to even be there. I tried to shed the hospital skin I’ve been wearing since July 18th and put on the mom of a preschooler skin. It’s never an easy transition and we’re still in the midst of intense treatment so I’m not sure I really can do it. I can’t tell if this year is easier because I’ve already been through the awkwardness of the first day and days of school and know the routine, or harder because Liam’s bald head make him stand out and turns heads. (So much for blending into the crowd.) And of course you want to tell people the hurdles that have been overcome just to do something as simple as say “Good Morning” to teachers and classmates, but it’s not information I would volunteer unless asked and then if asked have to quickly asses how much information I should give someone without overloading their senses.

From Liam’s perspective, it was a glorious day to see his friends from last year, his teachers and be back in his “safe zone.” I was worried his friends wouldn’t recognize a bald-headed Liam. No one had any trouble identifying him which might speak to the bubble of enthusiasm that surrounds him.

Friday, September 12th
Ella’s first day of preschool. Ella and Liam went together and Liam was very excited and protective of his little sister. Ella was a model student, as we all knew she would be.

Monday, September 15th
The 6 a.m. antibiotic dose was the last one, a very good thing. It was exhausting. After school was a trip to the hospital for radiation simulation. Liam underwent X-rays and a CT scan (I believe it was his ninth) to give to a physicist who does whatever a physicist does in order to figure out how to point the very powerful radiation beams at a very small area nestled between his kidney and liver to zap any remaining sneaky bastard cancer cells that escaped two rounds of high-dose chemo. And then we had to make the mold that would help hold him in place during radiation where he has to be perfectly still. Two liquids are mixed, shaken to a look and consistency similar to pancake batter, poured into a giant plastic bag and then spread out on the glass table of the radiation machine so that the liquid is about 1/8” thick. Liam was asked to lie down on the plastic bag with his hands above his head, something he was reticent to do but finally did, and be still. Within minutes, the concoction warmed up and started growing all around him. And within 10 minutes, there was a mold of Liam’s small body from his waist to his head. He was fascinated but also a bit hesitant. I hadn’t done a good job finding out what was entailed with getting a mold of his body so I didn’t have time to prep him. He doesn’t like surprises. My bad. As a reward, we took the subway home which he loves.

Tuesday, September 16th
An e-mail arrived from Kristina in Dr. Kushner’s office with the schedule for his CT scan, bone marrow tests, MIBG injection and the nerve-wracking MIBG scan. All the tests were Friday and Saturday. This set of scans represents our new starting point and when the five year clock once again starts ticking. From here out we need to get to five years before we can breathe easy. Five years. 60 months. OK. Let’s go. Start ticking.

Thursday, September 18th
A trip to the hospital after school for radiation practicing. Larry and I have our doubts as to whether Liam can stay still. There is a flurry of e-mails with Child Life to discuss strategies for how to prepare Liam for this experience. The thought of the guy on the move having to lie perfectly still in a room by himself while red lights line his body including straight down his face, a camera rotates around him and the machine makes a loud ticking noise This is a new experience for Liam since the last time he did radiation, it was under anesthesia. More on radiation, take 2, later.

Friday, September 19th
An early morning arrival and full slate of activities – Access his medical port with the scary-looking 1-inch that pierces his skin to reach the port, bone marrow procedure (this is the one where bone marrow and samples of bone are taken from four sites in his pelvis), followed by a CT scan, followed by an MIBG injection. Doesn’t sound so bad, right? The tricky thing is the timing. The CT scan requires drinking 8-ounces of apple juice laced with contrast at least one hour prior to the start of the CT and the MIBG requires having swallowed the awful tasting pure iodine drops at least two hours before the MIBG injection of radioactive dye in order to protect his thyroid. Timing is critical and a two-hour delay to the bone marrow procedure meant forcing a groggy 4-year old just waking up from anesthesia to drink something he doesn’t want to (he knows all about contrast) while checking your watch every few minutes to make sure you also get the iodine drops in by the required time and dealing with anesthesia demands. Anesthesia makes Liam do some weird things. On this day, the weird thing was insisting with a crying fit that I remove the pressure bandages that were covering the four sites on his pelvis. These are the same bandages that have also remained in place for five weeks when he is convinced they need to remain in place until they literally fall off his body. So we’d take a sip of contrast, and I’d rub the bandages with the adhesive remover for a few seconds, sip, rub the bandages with adhesive remover…his turn, my turn until he had consumed all the contrast and I had carefully removed all the pressure bandages while making sure none were still bleeding.

We arrived at 7:20 a.m. and didn’t leave until after 4 p.m. As Liam would say, it was “no fun. No fun at all.”

Saturday, September 20th
We arrived at the hospital at 9 a.m. for his MIBG scan. This is the super scary scan that lasts almost two hours. The normally bustling waiting area with varying degrees of worry on people’s faces was dark and quiet. Benson the technician was waiting for us. Liam was the only patient in sight or sound. We passed by the interpretation room that is usually filled with doctors reading scans of patients of all ages and stages of disease but today it was empty. The room with the MIBG scanner was darkened. Because we were doing a scan on a weekend and the pediatric day hospital was closed, he wasn’t able to receive an IV dose of medicine that tends to make him drowsy. We gave him a pill version of the medicine, but in the past it hasn’t done much of anything. This would be the first scan Liam went through without a little help of some sleepy medicine via IV and it would be a big test. Could he do it? Could he stay still while a 3’ x 3’ plate was within inches of his face? Could he stay still while two plates were positioned on either side of his body as the stretcher inched past the plates. Could he do it first thing in the morning when he tends to have the most energy? He hopped up on the table with duck puppy, big puppy, monkey puppy, little puppy and his two newest stuffed animals that have joined the posse, placed his head on his beloved elephant-shaped pillow and declared that he was ready. Two rolled-up towels were positioned on either side of his head and taped across the top to help him hold his head still; his arms were positioned next to his body and he was reminded not to move them even to subconsciously play with his two favorite loveys, duck puppy and big puppy, which he holds in each hand during the scan; and a 2-foot wide Velcro belt was strapped across him to hold him in place and serve as a reminder to stay still. He started shivering even with super soft yellow blankie covering him. Benson brought him a heated blanket. He said he was warm and that we could start. He did beautifully, through three quarters of the scan. And then he started having a hard time. He was fidgeting. He asked me to rub his head. He couldn’t get comfortable. It was becoming extremely difficult and Benson kept coming in and rechecking Liam’s position to make sure the test would be OK. And finally, finally…it was over. As we unstrapped Liam and let him sit up, I put my hand on his back and found that it was completely soaked. The back of his head was dripping with sweat. His pillow was soaked. No wonder he was fidgeting – he was hot and sweaty! He was supercharged with pent up energy and wanted to see his picture. Benson went over to computer in the room to pull up the scan. Liam stood perched on the top of a hard drive studying the picture. I nervously looked at it hoping I didn’t see anything lighting up which shouldn’t be lighting up which would indicate cancer. The salivary glands along his jaw were glowing…that’s OK…the thyroid was glowing…that’s OK…the area near his port was glowing…again, OK…and then as we worked our way down his body I saw a small spot glowing near his right kidney, the site of his surgery. I quickly asked Benson what I was looking at. He didn’t really answer me. I asked him what it was. He said he didn’t know but that’s why the radiologist who read the early scan ordered another view be taken. I could feel the bile coming up my throat. I urgently but not too urgently asked Benson what it meant. He replied in his sing-song voice and chipper accent, “It might be nothing.” Whoa…what do you mean “might?” Might? Might? I felt my knees turn to Jell-o. I wanted to run to the radiologist’s office and have him or her tell me right then and there what I was looking at. I tried to reason with myself and managed to pull myself together enough to seem calm around Liam who was thrilled to be looking at a picture of his inside body. We left. I e-mailed Dr. Kushner from the cab knowing he works almost every weekend and that he would certainly see my e-mail. I kept trying to reason with myself, but it was really hard. We arrived home. Larry asked how it went. I told him. He started to do the same thing I was doing…it couldn’t be…but it could be…it had to be something else…but it might not be. And while we were both confident, it was still unnerving. I kept checking my e-mail all weekend. No response on Saturday. No response on Sunday morning. No response on Sunday afternoon. OK, was he not getting in touch with us for a reason? Was this the one reason he wasn’t in the office? Was he totally annoyed at me for acting like a paranoid mom and was too irritated to respond. Was he waiting for a second opinion on Monday morning? Was he waiting until the weekend was over before contacting us? It was a real mind-over-matter experience but by Sunday evening with no response, it was becoming an exercise in torture. We were both becoming stressed playing the waiting game. Finally, finally Monday morning arrived and we knew we’d have a response. Monday morning came and still no answer, even though we know Dr. Kushner arrives early. I dropped Liam off at school. No answer. I went outside with three of my non-cancer mom friends who encouraged me to call him. I did and got one of his assistants. She took a message and told me she’d have him call. Still no answer. School was over at noon and still no answer. Liam ate lunch. No answer. He took a nap before having to head back to the hospital for radiation simulation. No answer. We hopped in a cab to go to the hospital. An e-mail popped in from Dr. Kusher. Should I open it? Do I dare when I’m alone, with Liam, on my way to the hospital. I had to know. I needed to know. I opened the e-mail. It read, “It was nothing. MIBG negative – no NB. EXCELLENT.” OK. I can breathe again. I kissed Liam’s head over and over and over and blinked back the tears.

During our time in patient in the noisy room, we discovered that listening to music helped him to fall asleep at night. True to Liam spirit, he wanted me to be a part of the experience so he insisted that we share the headphones. We’d be lying on our sides, face-to-face so close that our noses would almost be touching so that we could share the headphones. I’d scroll through the songs and he’d shake his head yes or no if he wanted to listen to it. It was a series of no, no, no, no. And finally he heard a song he liked. The song was “As” by Stevie Wonder. And from that night on, he wanted to listen to that 7+ minute long song every night because, as he put it, it made him think about me, Daddy and Ella….that he’d love us always. Now, go look up the song lyrics or listen to the song and know that I’ll be loving you always for being there with us.