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Sunday, February 22, 2009

Early February 2009

Stories and Vignettes from Round 2 of Regular Dose of Antibodies.

Monday Monday.

Monday, February 2nd was tough. Mondays are always tough in a week of antibodies. The song, “Tell Me Why I Don’t Like Mondays,” plays on a continuous loop in my head as I try to reason, explain, cajole, plead and finally grab Liam to restrain him for a finger stick. It really is no fun. He curls his fingers into the palm of his hand with such strength that it takes two adults to uncurl one finger. He cries, screams, begs me not to do it, protests, yells “no…no…no…no…no” over and over again and kicks with the strength of a donkey. I feel awful restraining him. I feel like I’m betraying his trust and hope and pray he’ll forgive me. And then it’s over and he bounces back to being Liam. Unfortunately I don’t bounce back as quickly but try to shake off the experience since he apparently already has.

The insertion of the peripheral line in a vein in his arm was equally unpleasant. He was nervous about it, understandably so, and kept asking seemingly random questions that were not at all random about the process for about 24 hours prior to the actual deed. “How big is the needle?” “Is it going to hurt?” “How does the little tubie stay in?” “How does the needle come out?” And when we finally had a bed, in one of the shared room, the real assault began. First the shot. OK, done. Then, the peripheral line. It’s not that either Liam (or I) would prefer to still have a medical port and the stress associated with a temperature over 100.4, but to a 4 ½ year old the concept of a needle piercing a vein is tough. We had a different nurse than we normally do which added to his discomfort. We were in a different room than normal which also got him off kilter. (“Mommy – Why are we in this room?” “Mommy – When are we going to go to our room?”) This time it took three adults to restrain him in order to get the task completed. I have never seen Liam like this. He literally was hysterical with fear. And then unfortunately our poor nurse hit a valve when inserting the needle and had to abandon her attempt to access that vein. Out came the needle. We had to do it all over again with a fresh arm. As we were trying to keep him still, he was trying to do anything he could to stop the process. I heard the nurse calmly but firmly saying, “Liam – You can’t bite. You can scream and yell, but you can’t bite.” He hadn’t bitten her…yet…but he was a cornered animal looking for any escape. OK. Did I mention how much I hate Mondays? After it was finally over, he almost immediately fell asleep in my arms. And the final part of the day’s assault…the administering of antibodies. Now, just to make sure I am clear, I am not complaining about antibodies….not in the least. I am grateful for the opportunity to receive them. I can justify the pain knowing what it can and hopefully is doing. But I’d be lying if I said a piece of my heart isn’t ost every time I go through the experience of hearing my sweet, sweet guy cry out in agonizing pain. But would he have pain this round, the tell tale sign that the treatment is working. This is the part of the twisted story where you nervously and hopefully wait for the pain. Come on pain…show your face. Wait. No. What am I saying? I’m wishing pain on my child? But as crazy as it sounds, that’s exactly what I’m doing. And then it started. And everything was good. Sort of.

When he was in recovery mode, he called out to Cat, his gal pal nurse who has spent more time with us during antibodies including the very first time we went through the experience. Cat is the nurse he has shared a cab with which makes her extra special in Liam’s mind. Cat is the one whose name I urgently called out over and over when Liam became unresponsive back in the fall which makes her extra for me too . With slurred speech and droopy eyes, Liam gingerly called out for her. “Caaaaaaaaaaaaaat. I want you to ride in the cab with us.” And Cat promised Liam she would. After Liam had recovered enough to be able to moved to lay down in his stroller, he insisted on giving out the special Disney character pens to his doctors and nurses and others who play pivotal roles in his life that came back from our recent pilgrimage to the Magic Kingdom. We tried to convince him to do it another day, but he insisted on doing it right then and there. Cat pushed the stroller. I carried the bags that come along with Liam when he’s at the hospital. Liam clutched a plastic bag filled with a collection of Mickey, Minnie, Tinkerbell, Donald, Chip and Dale, Goofy and Pluto pens. Liam would reach into the bag and through blurry eyes determine which character should be matched with which person who he thinks of as friends but whom are part of a highly-skilled medical team working very hard on his behalf. I’m not sure if it was a coincidence or planned that Goofy was deemed a good match for Dr. Kushner and Linda received Chip and Dale which, if said fast, sounds like the famous and talented male dancers.

When we finally left the hospital, Liam was snuggled in his stroller wrapped in blankets and dozing in a narcotic haze. He didn’t appreciate the blast of cold air that greeted us. And removing him from his stroller cocoon was not easy. When the cab pulled up to the train station to drop off Cat, she quietly exited to let him continue sleeping. He, though, was conscious enough to know she was leaving. “Caaaat….wait…” His voice sounded so small and weak. Cat came back. “You forgot to give me a kiss and a hug.” She gave him a kiss. “Caaat. A hug too.” And after her very long Monday, she leaned down to give Liam a very tender hug amidst all his owies. We said our good byes again and she was on the curb when he urgently called out to her again. “Caaat. Caaat. Wait. I have to ask you something.” Once again, she came back and leaned next to him. “Caaat. Um…Um…Um….Caat. What kind of soap do you use in the shower?” “What kind of soap do I use? Ah…Let me think…cucumber melon. It’s green.” And with that information, Liam finally allowed Cat to depart.

The next day when we arrived, Cat presented Liam with a bottle of cucumber melon soap. I’m taking that bottle of soap and packing it in Liam’s bag to use in the shower at the Y after his weekly swimming lessons.

Conversation between Liam and Ella overheard on Thursday morning, February 5th around 10:30 a.m. on day four of round 2 of regular dose antibodies.

Liam: “Ella, when I come home from the hospital I’m going to have owies and I need you to not make any noise. So you can’t drop the blocks when you’re building a horse barn with Daddy like you did last night. I don’t like that noise. It’s not that I don’t love you, I just have owies. But I only have one more day of owies after today.”

Ella: “OK Liam. I know Liam.”

NASCAR – Staying in the Race
At some point during the week, I had an epiphany that the life of a pediatric cancer patient is similar to a NASCAR car. Let me preface this by saying that I don’t know too much about NASCAR, but I do recognize a few drivers and have always been impressed by the sense of community in the NASCAR world. My impression of NASCAR cars is that during a race, pit crews do whatever they can to get a race car back onto the race track, even if the solutions are slightly unorthodox. It’s all about staying in the race, even if driving under challenging conditions. When you look around at kids in various states of treatment, some with hair but most without, some able to walk and some not, some looking present and accounted for with others looking far off and distant, some zipping around like there are no issues with others being a bit more tentative, I was struck with the feeling of being in the middle of a NASCAR race. You hear parents talking about treatment options and plans like they’re no big deal. “Yeah, we’re going to do another round of high-dose chemo,” or “We’ll do 20 more hits of radiation to the tumor bed,” or “We’ll be getting an injection of radioactive isotopes that will attach directly to cancer cells and I can’t touch or be near my child for a week until he isn’t radioactive.” In our world, a treatment option is better than no option, but oh how unbelievably abnormal it all is. Fix ‘em up and get ‘em back in. It’s just crazy.

A short Liamism

(Liam to Grandpa Rich in Michigan following surgery to repair a shoulder injury.)

“Grandpa, why are you getting old?”

Liam and Barack
Liam is making a movie. We actually have several takes of it and if I could figure out how to get the movie downloaded from my phone, I’d be happy to show it. He heard that Barack Obama smokes and is quite disturbed by it. His concern is not that Barack will get cancer, Liam doesn’t know the word cancer or what it means, but that Barack’s brain will get hurt from smoking which is what he saw in a commercial. He decided, on his own, to make a movie for Barack to tell him to stop smoking and decided the best place to shoot the movie would be at “his” hospital. Of course the irony of a 4 ½ year old cancer patient who doesn’t know he’s a cancer patient or, for that matter, even a patient making a movie about why smoking is bad from a hospital that only treats cancer is a little overwhelming, but that’s another story. In the movie, Liam emphatically tells Barack that smoking is bad, really bad, and if he doesn’t stop he’ll have to go to a hospital. And then, because he’s 4 ½ and more interested in playing, closes his movie by asking Barack to come over to his house to play. Oh, and then snorts like a pig to close the movie.

A new love: Wall-e
The new favorite movie in our house is Wall-e. He has watched the move so many times we can’t count and asked so many questions about recycling and space travel that we also can’t count. He loves Wall-e and turns toys in his collection that make noises that sound like Wall-e into Wall-e. One of his favorite parts about the movie is the theme song by Peter Gabriel. He loves the song, so much so that we downloaded it for him to listen to over and over. He wanted to know the words, so we looked them up so that he could learn them. When we’re in the car, he sings along to the song in his sweet, squeaky voice. If you have a chance, listen to the song and hear Liam’s little voice singing along emphatically singing, “We’re coming down to the ground!”

One of the activities we took part in during our storming of Walt Disney World was breakfast with the princesses. We arrived at Cinderella’s Castle and waited in line with lots of little princes and princesses, but mainly princesses, waiting their turn to greet Cinderella. We’re not big on the princess circuit yet. I couldn’t even identify Belle or Princess Jasmine so the whole concept of meeting the princesses was interesting but certainly didn’t have my kiddies in the frenzy of excitement that it did with other children decked out in their princess outfits. When our turn came, the red velvet rope let us into the special area with Cinderella. Ella was completely shy but Liam stepped right up to say hello. He was quite taken with Cinderella’s beautiful blue dress and perfectly coiffed hair complete with princess headband. He cocked his head to the side, put a hand on his hip and innocently said to Cinderella, “Ah, we’re going upstairs for breakfast…would you like to join us?” Cinderella clearly was taken aback. She laughed and explained in her princess voice that she was very busy greeting other knights and princesses but would be upstairs later and be happy to stop by to see him. And then, being Liam, he paused, furrowed his brow, put his hand on his hip, cocked his head and said, “We have a really pretty hotel room. Would you like to come over and play?” Cinderella was quite gracious as she tried to explain that she had previous engagements. I was quite surprised, impressed and proud. And then, snap, the picture was taken of all of us surrounding Cinderella. During the rest of our trip to Disney Liam would declare whenever he saw Cinderella, “there’s my friend!” He also hijacked all of the Cinderella dolls in the collections of princesses Ella collected during our trip. Since we’ve returned from Disney, there is a Cinderella positioned on the dresser next to his bed in the city home (what I think of as the “hospital home”) and on the top of the headboard in the country home (the home I think of as home). Cinderella, you might have made the biggest mistake in your life. I think you should have taken Liam up on his offer to come over and play.

There are times I get stuck in a freeze frame state. My body is functioning and it looks like it’s moving, but my heart is frozen. Someone will get tough news, and I freeze as I take on that family’s weight. A child will lose their battle and I freeze with a noose wrapped around my heart. I go to this place where I feel vacant and empty and the only time I really feel like I can snap out of it is when I’m with Liam and Ella. The thing I didn’t think was possible just recently happened. I now know so many children who have lost their cancer battles that names are being repeated. There are two Jessies. Two. Two Jessies who should still be here; One who was on the cusp of spreading her wings and starting her senior year of high school, and another who was in kindergarten getting ready to embark on her school career. One Jessie was Liam’s first and much older girlfriend and the other a roommate with us during one of our hospital stays. There are so, so many who share names who are in treatment, something I didn’t think possible. And the faces of those children who have been lost are permanently etched in my memory bank. I have snapshots of children burned into my memory bank. A smile seen in the playroom while tackling a Scooby Doo video game. A grimace during a painful post-operative walking session to get a body moving again. A chorus of happy birthday for a 5th birthday. (I can’t sing happy birthday without welling up with tears.) Those names and faces give me inspiration. They’re also incredibly painful. There are two Jacks who are back in the thick of the battle, both for a second time. Those Jacks and their families are with me all the time. There were two Zachary’s but one lost his battle this past fall. The names go on and on and sometimes it just gets so overwhelming. No one said life was fair and I’m not feeling sorry for myself, but come on powers that be…can we give kids a break? Seriously…let’s let kids be kids and save the crappy stuff for adults.

Monday, February 2, 2009

"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.