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Saturday, April 28, 2007

Thursday, April 26th Update

We got a call from Joan at the blood bank in the morning. She said that we didn't have to give Liam a "G" shot and we didn't need to come back in for another stem cell harvesting session. We needed 7 million stem cells, they collected 50. Yes, 50 million. She sounded incredulous and wasn't sure she heard the number correct herself and was thinking that maybe it was 15 million. And then she joked and said he is generating enough stem cells for 10 people.

A second call came in on Larry's cell phone. It was Dr. Kushner. The results of the CT scan showed a dramatic reduction of the tumor. He confirmed that the number of stem cells collected was, indeed, 50 million.

Exactly two months to the day into our cancer war and we have a small battle victory. His tumor is responding to the high-dose is chemo. This is good, right? I'm relieved but also afraid to be too happy because I know we still have a very long way to go. But I can't help the tears from coming when I hear the news. And what does Liam do? As soon as Larry hung up with Dr. Kushner, Liam jumped off the couch with his bag of cheese puffs, announced he wanted to rub Daddy's feet, and started to rub them with his cheese-puff-covered hands. But in order to do a really good job, he insisted on using lotion on his Daddy's feet. What is it about Liam that makes him so loving? It's as if he knows we're working really hard on his behalf and any opportunity he gets, he wants to give us a break. The rest of the day Liam spent running and pushing his dump truck around the apartment and playing with Ella. He was so happy and so alive. Several times throughout the day I saw him giving Ella hugs and kisses. It felt like we took a day off from cancer. There were no dreaded dressing changes today, no trip to the hospital, no tests, no poking/prodding, just a day to be a little boy.

I know in my head that the medicine is working. I know in my heart that the prayers, positive thoughts, blessings, healing crystals, blessed figurines, good wishes and meditations are also working. A friend is making 40 loaves of Challah bread this weekend with a group of women from her synagogue in honor of Liam. It's an old Jewish tradition that brings good health to those in need. We are honored that they would make such a commitment of time for a child whose parents aren't a member of their community. But again, it takes a community the size of New York to heal a sick child.

Wednesday, April 25th Update

Today is Liam's CT Scan and the first of what we are expecting are several stem cell harvesting sessions. For the past few days, we've been giving him triple doses of "G" (GCSF) which stimulates white blood cell production. Larry holds Liam's arms, and I give the shot. I have to put the needle into a small opening in his "insuflon" which is a small tube inserted just below his skin. We don't have to inject him directly, just through the tube. The width of the tube is really small…really small…and I'm not exactly the best aim…but when the medicine in the shot is around $1,000…you want to hit the mark. But here's the problem, I'm trying not to be nervous and shaky when my son is crying hysterically because the sight of the needle frightens him and he knows that his arm is going to burn as soon as I start pushing the plunger. (Did I mention that I've been told the medicine burns like a bee sting?) And here's what's worse as a mother…I'm the one causing the pain and my son wants only me to comfort him but I'm delivering the pain. Oh goodness. Now, here's the other twist…we have to wake him up in the morning to give him the shot. What a way to start off the day. Back to Wednesday morning. There are two objectives for the morning. 1. Get Liam to drink the contrast fluid which is needed for the CT scan and 2. Give him a "G" shot. Now, here's the problem. If we give him the "G" shot too early, he'll be so upset that it will be nearly impossible to get him to drink the contrast. He's supposed to have it by 8 a.m. but we also have to make sure that he drinks the contrast by 9:10 so that we can get to the hospital by 9:30, the time we're supposed to arrive. After a pre-morning strategy session, Larry and I decide to focus on getting him to drink the contrast…and do the shot after he's had all the drink. So, I wake up Liam holding a cup of coffee and a sippy cup with 8 ounces of apple juice and the small amount of contrast. (I was told to mix the syringe of contrast I was given with 8 ounces of apple juice…what I now wished I had remembered to ask is if it could have been less than 8 ounces which all of the sudden looked like a huge amount.) I give him the sippy cup, tell him it's apple juice and cross my fingers that he'll drink it. He takes one sip, looks at me and says, "I don't want it. I want chicken." OK – This is not what I want to hear. I can't give him anything solid to eat because he's getting general anesthesia and he only wants solids. We spend the next 1 ½ hours doing everything we can to try and get him to drink, but Liam isn't having anything to do with the innocent looking sippy cup filled with the liquid that will ensure a clear CT scan that will guide the surgeons on May 2nd. In fact, it's not only not going well…it's going horribly. We try to convince him, cajole him, bribe him, beg him, pressure him...we talk about taking him to the Fire Station to enlist the help of the firemen…and we're constantly looking at the clock realizing that every minute that goes by takes us closer to the time we need to leave to get to the hospital. By 9:15 we call the hospital…speak to Ursula….tell her what's going on…and she tells us to come in and we'll have to take the tube down the nose approach. We tell Liam that if he doesn't drink the juice, he's going to have to have a tube put down his nose. He tells us he wants the tube. So we give him the shot of "G," console him while he's crying that it hurts, and hurriedly collect our bags (that contain baked chicken nuggets…his food of the week in addition to cheese puffs) and head off to the hospital. When we arrive it's after 10 a.m. We continue to try get him to drink. I notice that other parents are looking at us sympathetically having done the same dance that we're doing with Liam. You always feel so naked at the hospital. Pain is a common denominator and your pain is usually shared with everyone. We're anxious because we know he hasn't had the contrast and therefore can't get the CT but know we need that CT scan for next week's surgery. The CT is scheduled for 11:30 and we've already missed the two hour window of no fluids. We're asked if Liam can do the CT without anesthesia, we tell her we sincerely doubt we can get Liam to lay perfectly still on a table that's moving while he's passing through what looks like a giant donut. I talk with the nurse who was assigned to Liam and give her the "Liam likes to help" speech and doesn't like to be surprised…and then ask her if she can give me one of the tubes that would go down Liam's nose so that I can show it to him. While we're focusing in trying to get him to drink the contrast, there's a quick jockeying with anesthesia to see if they can take him later in the day. (Anesthesia is usually really busy.) By now Liam's beloved Teres from Child Life is involved. She shows Liam a demonstration doll that shows him what it will be like…he's crying…watches her…and then wants to help her give the doll fluids through the tube. (No, Liam – this is what is going to have to happen to you if you don't drink.) Someone has a pizza in the playroom which then sets Liam on a "I want pizza path." (Who in the world has pizza before 11 a.m. anyway?) I carry him to a phone, dial some numbers and place an "order" for a pizza and tell him it's coming. He calms down. We're given the news that anesthesia can take him at 1 p.m. which gives us 10 minutes to get the contrast down him…one way or the other. Larry puts a tiny bit of the tube up Liam's nose, and he announces he'll drink the juice. So for the next 10 minutes, Liam takes a sip, tells me he wants to drink sitting somewhere else…I carry him there….he takes a sip…tells me he wants to go somewhere else….I carry him there….and we continue until Ichi, a nurse practicioner on the neuroblastoma team, tells us he's had enough contrast to get a good reading. We go to Ichi's office, Liam immediately goes for the lollipops she keeps in her office…and when he's told he can't have one has a total meltdown – this was a really good one, the kind where I can't calm him and he's screaming so loud that it makes my ears ring. He's frustrated, angry, feels violated, and there's nothing I can do except hold him. He won't let Ichi take his temperature, won't let her touch him…all things we need to do to make sure he's OK for anesthesia. We finally get him calmed down enough to get his vitals taken, swing over to the IV room to draw blood to make sure he has enough white blood cells in order to do bone marrow harvesting, get hooked up to fluids for anesthesia, and then wait for the next set of instructions. Someone tells us to go to the second floor to radiology, and we wearily wait. I feel like a horrible mother causing my son so much pain.

We finally make it to radiology where Liam remembers watching Rudolph the Red Nosed Reindeer the last time we were there, and wants to watch it again. Guess what? We can't the portable DVD player that is in the waiting room area to work. I don't know if it was a case of stress overload, but no matter what I do…this child-friendly, purple-colored DVD player just won't work for me. Someone comes over to help. She can't get it to work either. Larry tries and he can't either. A man who works in radiology comes over, presses a few buttons and presto..it works. We watch about 10 minutes before we're told they're ready for our little Liam. I carry him into the CT room, remind him that this is where they're going to take his picture (the explanation I've been giving him about what is going to happen today and that he seems to understand), the anesthesiologist injects a white liquid into his tube, and within three seconds he's out. When he finally wakes up in the recovery room, I have the chicken nuggets, ketchup, squeezy juice, and cheese puffs laid out next to him. He seems to forgive me for denying them to him earlier and voraciously eats eight chicken nuggets, drinks lots of juice, and crunches on cheese puffs…but still asks for pizza.


OK – So much for the first part of the day. Now onto stem cell harvesting – a four hour process that require Liam to stay in a bed.

Stem cell harvesting is done in the blood donor room. We walk in, are brought back to a room that is separated from the room where donors are voluntarily donating blood with a curtain, and begin phase II of our day. Lots of questions, lots of explanation, and lots of waiting for blood to arrive for Liam to prime the machine before we can start. As I looked into the donor room at people donating, I wondered if they knew that Liam was one of the people who could potentially be receiving the blood or platelets they were donating. I wondered if it made them feel better about their donation of time and blood to see a young face of cancer. I wanted to go over and thank each person and tell them how much I, as a parent of child with cancer, appreciated their effort. The room that we are in has three beds and is lined with cabinets that store supplies. Many of the cabinet doors are open and I find myself looking at what is in them to see what supplies a blood donor room needs. Two of the beds have small TVs attached to the end of a long arm that allows them to be pushed up, down, sideways, etc. I know Liam is going to love this feature. We're the only patient in the room. The machine next to Liam's bed is old looking – from the 70s I'm told – and looks to me like something out of Frankenstein movie. There are tubes snaking all over the front of the machine in an up and down pattern. The entire front of the machine, which looks to be 3' x 3', is taken up with tubes. Above the machine is a steel bar that holds bags of fluid running into the machine and a lone empty bag meant to collect Liam's stem cells. In a big cabinet below the machine is a centrifuge that spins his blood to separate out the white blood cells. We're given a lesson in how the machine works and blood typing. Liam is fascinated by the process…he loves watching the machine. We go through the consent paperwork, continue the wait for blood, ask some questions about the average number of sessions patients Liam's age need to have in order to collect the required 7 million stem cells. When Liam's blood counts arrive, we're asked if he has been complaining of joint or bone pain. The "G" shots have done their thing and his white blood cell counts are extremely high….so high that one of the technicians says she wouldn't be surprised if we only had to do one session. True to Liam's style, he hadn't been complaining at all…he never does…even when his tumor was literally taking over his body. Larry arrives with a pizza, the blood arrives from the blood bank, and we're ready to go. At this point Liam has eaten eight chicken nuggets, the first time in months we've been able to get him to eat meat, and handfuls of cheese puffs. He then proceeds to eat nearly two entire slices of pizza which makes Larry and I ecstatic. He eats pizza while pushing and pulling the little TV in any direction that suits his whim and life, for a moment, is good. He finishes his pizza, announces he wants to lie on top of mommy, says he wants to watch Curious George, Larry and I nervously and guiltily look at each other because we don't have the portable DVD player with him, and try to explain to Liam that it might not be on to head off a meltdown. By some stroke of good fortune, Curious George is on and all is well. As Liam is lying on top of me, there are four tubes snaking along my arm that are attached to him. Three of the tubes are drawing and mixing blood coming out of his body and the fourth tube is returning blood to him. His entire volume of blood is cycled 4 ½ times through the machine and I can feel the warmth of his blood through the tubes. He has become fascinated this week with things his body can do and loves to tell people about it. The people in the blood donor room seemed to be surprised at how nice and polite Liam is. Even under incredible duress, he always says please, thank you, and no thank you. He has never once lost his manners during this odyssey which amazes me. And he always seems to be more interested in nurturing the nurturer by making sure people are OK. I can't tell you how many times I've hear him ask someone if they're OK which makes me so proud of him and breaks my heart. While he was napping, someone handed me a stack of small squares of paper stapled together with the names of the people who have donated blood or platelets for Liam. There are 53 names. 53 people have come forward on Liam's behalf to donate and several people have come multiple times. And as I'm looking at the names, I'm surprised that about half of the names are of people I don't know, something simply unbelievable to me. Unless those people come forward and tell me who they are, I'll never be able to thank them in person. Privacy laws won't allow for any other information other than the donor's name to be released. All I can do is thank them by continuing to be Liam's rock.

When we're finished with the process, we're told to not give Liam a "G" shot in the morning until we hear from the blood bank. They think they might have collected enough. How 7 million stem cells could be collected in one session seems unfathomable to me. As we're leaving, we find out there are two people in the donation room donating for Liam. One person I know and the other person I don't but find out she heard about us through a friend of a friend. Liam thanks both for their platelets (yes, he says the word platelets) and true to his personality, expresses concern that Marjorie might have an owie that hurts. He also makes sure she has a nice clean squeezy ball to hold onto. It was late and a long day for us, and I feel horribly that I didn't write down the name and address of the person who came to donate for Liam who doesn't know me, Larry or our son. I hope she knows how grateful we are for her gift.

It's pouring when we leave and it takes a long time to catch a cab. Liam is exhausted, we're exhausted and nervous about the results of the CT. When we arrive home, another Liam "elf," Lillian, is leaving the apartment with food for us. Her face is like an oasis of peace and it was so nice to see someone from the "outside world" after our long day in the trenches of our cancer war. I am beginning to understand why food is so important to soldiers…everything else in their lives is so difficult…it's nice to have one thing that is good. Lillian leaves and we stand at the counter eating chicken soup out of the plastic container she delivered it in and ribs on the aluminum foil they arrived. Ella eats some of the pineapple as a snack and loves it, and Liam eats more cheese puffs and chicken nuggets.

We ended the day with the four of us sitting in bed together serenading Ella with "Twinkle Twinkle Little Star" as she drank her bedtime bottle. It was Liam's idea to sing to Ella. Once again his focus is on others and not himself. And that is one of the things I love the most about my son. It's also very painful…how could a child who seems so alive be so sick? It just seems counterintuitive to the laws of nature.

Thursday, April 26, 2007

Friday April 20th Update

Today is Friday, April 20th. It's the end of another week. By Friday, we are a jumble of raw news. Liam is edgy. We're edgy. We're all on sensory overload. Only Ella, our dear sweet Ella, is happy. Tonight Liam he had three meltdowns. The first one happened when Larry ate one of the cheese puffs* Liam was methodically eating. With Larry's innocent act, Liam was reduced to tears that seemed to come from deep within his soul. We felt completely helpless and nothing we said could calm him. (If hearing that our son with cancer is eating cheese puffs makes you cringe, you have to understand that Pirate Booty Organic Cheese Puffs is the o-n-l-y food we could get Liam to eat this week. The o-n-l-y food. Literally. I'm not joking. He didn't want anything for several days as he dealt with the nausea associated with the third round of chemo and avoided eating any solid foods for days. Around the middle of the week, he finally expressed an interest in eating and cheese puffs became the food he chose as the one he would eat. Can you imagine the absurdity of the conversation we have with our son trying to find something he will eat that is loaded with calories? I feel like Willy Wonka trying to entice Liam with any sweet I can think of…but everything is met with an adamant no.)

The second meltdown occurred a few minutes later when he was trying to tell us something that we just couldn't seem to understand through his pacifier. He kept saying three words over and over and over again and we desperately tired to understand him. It was like playing a game of charades with a person who speaks a different language. "Liam – Show Mommy and Daddy what you want." (Crying.) "Liam p-l-e-a-s-e show us what you want." (Sobbing.) Finally, finally we figured it out. He was saying "George the Monkey," to tell us he wanted to watch Curious George the movie. By then, it took me holding Liam in the new comfort position he has adopted since being diagnosed which basically is him in a fetal position with his belly against me, knees up, head on my shoulder and me trying to figure out how to hold him without dropping him. When he's really upset or feeling insecure…it's the only way he wants to be held. It's as if he's turning his back on the world and escaping into his protective cocoon with my arms wrapped around him.

The third meltdown took place a few minutes later when he decided, after calming down from meltdown #2 that he wanted to rest on the kitchen floor on a bean bag chair. He wanted to be able to watch Larry put together the doll house that had just arrived and watch Curious George at the same time. We have two bean bag chairs: a red one and a blue one. I brought the blue one into the kitchen. He said he wanted the green one. I carried him into the room with the bean bags…showed him the red one and asked him if that was the one he wanted. "Yes," he said. I brought the red one to the kitchen which was greeted with another meltdown with tears and plaintiff wails for the other bean bag chair. I took the red one back, returned with the blue one, asked him if that was the one he wanted, through his tears he said yes, and then proceeded to tell me how he wanted it positioned on the floor. Liam has so little control over his life right now…so little…that we forgive his rare meltdowns as his release valve. But I'd be lying if I said they weren't frustratingly painful to live through. But then as soon as the dark cloud passed over head, it left and Liam was completely fascinated watching Larry put together the doll house. Watching the two of them do something as innocent as playing with a miniature house with miniature people and putting them through the paces of everyday life (Liam thought it was hilarious to have them go potty), is nothing less than magical. It's a beautiful and difficult scene for me to watch. On the one hand I'm so happy to see how happy Liam is playing make believe. On the other hand, I fear that he won't be able to experience the same joy with his own children.

It has been difficult to this week. It was rainy and cloudy most of the week which mirrored Liam's mood. I don't do well when Liam is listless, sluggish and needy because it makes me worry that the cancer is winning. And while logically I know why he's listless, who wouldn't be after going through three rounds of high-dose chemo in seven weeks, it's still hard. Liam and I were at the hospital every day with the shortest visit being around five hours. We were on pins and needles waiting for blood counts to improve post round three of chemo as we did our neutropenic "don't anyone get near us, touch us, breath on us" dance. We were completely anticipating a hospital stay but also equally hopeful at avoiding one. On a bright note for both me and Liam, because of his nausea from the last round of chemo, we were able to get him switched from Bactrim (an antibiotic commonly used with people with compromised immune systems to stave off a certain type of pneumonia which can be particularly nasty) to "Pentamadine" which can be given to him via IV. No more forcing, cajoling, convincing, pleading, begging, bribing, or reasoning with him as we tried to get him to choke down 5.5 ml's of the "yucky" tasting medicine. Every one of the six weekly doses of Bactrim (twice/day for three days in a row) was a struggle to give him. But the pressure to get him to take it is incredibly intense because you know how important a weapon it is in the arsenal to keep some particularly nasty germs at bay. But after he threw up two of his doses and basically refused to take any more because he associated it with vomiting, I pleaded with the doctor from Rome about alternative options. The beauty is once he has his initial "loading doses," he won't need to receive it again for a few weeks. How great is that? (And oh how my life has changed to be thrilled by this kind of thing.)

One thing I've felt since Liam's diagnosis is that life feels like it's being viewed with a new set of eyes. Everything is more vibrant. Every experience - whether it's watching Liam discover the joy of something as every day as realizing there are smoke detectors in every building to becoming giddy with excitement at seeing a frog – becomes a memory that is just somehow sweeter. It feels to me that Liam has accelerated the pace of his development. He's using the hospital as a classroom to learn his letters, numbers and colors. He knows the letter B because it's the elevator bank we take to get to the Day Hospital. He recognizes the numbers nine and one because nine is the number we press every morning when we get on the elevator to go to the day hospital and one is the number we press when we're leaving. He has red and blue down pat because every day when we're at the Day Hospital he's asked if he wants blood drawn from his red tubie or blue tubie that are coming from his chest. He also is learning things about his body. He now knows that his body makes things like new skin, pee pee and, yes, #2s. He knows that all of those things are warm when they come out of your body. He laughs when he tells people that a body can make stinkies. Potty humor begins at a young age, I suppose. One of his nurses taught him about his blood being warm when it comes out of his body so now, whenever blood is drawn, he feels the test tube in his hand and comments on how warm it is. "Nice and warm." He also likes to share with others how warm it is. In my quest to keep Liam in the land of the living and not the sick, I'm constantly using every opportunity I see as one for learning in order to keep him engaged. Everything becomes a chance to learn and I hear myself doing a lot of talking and explaining to him which he soaks right up. There are times I feel like a complete idiot and I see other parents looking at me as they hear me talking about how a DVD player works or explaining what an IV pump does. It's a steady all-day babble of information that is exhausting. I'm always scanning rooms, hallways, and elevators for things to teach Liam. A week or so ago, time becomes somewhat blurred, a man came to the Day Hospital to clean the giant fish tank that is a source of peace and fascination that many kids and parents enjoy. I saw the man, took Liam over and started explaining as best as I could, everything the man was doing. For me it was one of those, "I feel a bit like an idiot to be explaining to Liam what the person in front of him is doing when the person in front of both of us can hear what I'm saying," but it didn't stop me. Eventually the man joined in and spared me from having to figure out exactly what he was doing to do a quick explanation for Liam and Liam was completely enthralled. He stood very quietly taking it all in. He even got to turn the light in the fish tank off and feed the fish which he thought was thrilling. And after the man was finished, we were off to a new activity. A week goes by and Liam doesn't mention anything about the fish tank. And then one day we arrive at the day hospital to check in and have to wait for another family to be checked in. Liam goes to the fish tank and starts reciting all the steps to cleaning the fish tank. He remembered everything. He looked at me and wanted to know if he could turn on the light. I tried to tell him that I didn't know where the light switch was, and he proceeded to show me exactly where it was…which is something hidden from view. Both Larry and I have noticed that since our sweet son was diagnosed…he has become the question man. "What's that" is his favorite question and one he asks all day. When he's visiting his beloved fire station, everything is a "what's that" from each dial, button and connection point on the fire truck to the walkie talkies. I realize the "what's that" question is a completely normal one, but it's not something he did until after his diagnosis. The funny times are when we hear him talking to himself going through the steps of something like drawing blood from his tubies. It reminds me of someone studying for a test – he goes through every step with color commentary – in his sweet sing song voice. It also is so sad to hear how much of what he's learning is focused on very serious medical themes. The question he asks me a lot is, "why is that baby crying?" (Every time Liam hears crying, he associates it with a baby.) We hear a lot of crying and screaming when we're in the bed area of the Day Hospital. A lot. It's this horrible crying and screaming of children in agonizing pain that even the strongest pain medications can't relieve. It's horrible, heart-wrenching, sobering, extremely frightening, and a sound I wish didn't have to be. It's also the sound I know I'm eventually going to hear when Liam goes through 3F8 treatments. Every time I ask quickly and quietly ask a nurse if the child I hear screaming is receiving 3F8, she nods yes. Last week was a week that was hard for me to not keep up the fa├žade of "everything is normal, everything is OK," I focus on for Liam. Every time I let the screams of a child break through, I couldn't stop the tears from flowing. I try very hard to not cry around Liam. He knows there's something wrong with his blood. He knows we're fixing it. But at his age he has no concept about the seriousness of the situation and, therefore, has no fear. He fears things about the process of getting better – like dressing changes and GCSF shots – but he doesn't know enough to be fearful of the outcome. So when Liam asks me why the baby is crying, I tell him the baby is crying because he has a stinky diaper and doesn't want to get it changed…something he can relate to.

Thursday, April 19th, was a very special day for us. It was a typical long-day-at-the-hospital day with more of the typical frustrations. I've noticed that Liam is aware of the tone of voice I'm using so if I'm anything less than my usual "mommy voice," he gets very upset. It can make it challenging to be his advocate when you can only use your "mommy" voice. When I'm getting frustrated with the usual run around at the Day Hospital of hurry up and wait; feeling like Liam has been forgotten because it has been an hour and a half since he arrived and no one has come to tell us his medication is up from pharmacy and they're ready to give it to him; the realization that his blood hasn't been drawn which only makes our wait longer because it takes time to process the blood and if we find out he needs a transfusion of blood or platelets we've tacked on another two hours to our visit; the angst of figuring out where I'm supposed to change a stinky diaper when we don't have a bed and there's no changing room…I want to pull out my "this is ridiculous" voice on behalf of Liam…but I have to very careful at how that voice sounds to him. He doesn't necessarily understand all the words, but he recognizes the feel. But a typical day of frustration ended on a high note. Marge came over to cook for us using the chicken that I fully intended to prepare but finally admitted would never happen unless someone else did. (Both Larry and I have been eating whatever is easiest to eat at 10:30 p.m., our typical dinner hour, and many times it has been potato chips, hummus dip or the ice cream Liam won't eat.) We were blessed to have Michelle drop off some meals for us that kept us from our usual fare and for which we were so appreciative, one of those random acts of kindness we didn't ask for…but just happened…and which made a huge difference for us. Speaking of food, there's a team from one magazine that has been nothing less than amazing. I don't know why they've taken us under their collective wings and made sure we have food to eat, but they have and we're grateful. We're now at the next phase of dealing with Liam's illness that comes after the initial shock of the diagnosis wears off and the reality of "this is going to be an all out battle that will be waged for a very long time" becomes clear. Marge is cooking, Ella is asleep, Liam is watching Caillou on the sofa, and I'm flitting between the room Liam is in to make sure he's OK while trying to visit with my friend. I notice that Caillou is learning his address. His house number is 17 which strikes me as a strange coincidence. The first apartment we stayed at was on the 17th floor, the current apartment is on the 17th floor, and in another Caillou episode he visits a little boy who lives in a high rise building on the 17th floor. As I'm walking to the room where Liam is resting, I notice through the front door monitor that a fire truck has pulled up in front of the building. I run to Liam to let him see the truck through the monitor's small black and white picture, he (not surprisingly) immediately wants to go downstairs to see the truck with its lights on. I, of course, oblige. (Anything to get my son out of his funk.) I'm so anxious to get to the fire truck before it goes away that I don't stop to put pants on Liam. We go out into the foyer and press the elevator button and wait. And wait. And wait. And wait. And then we hear very heavy sounding footsteps on the stairs. The door to the stairs opens. Two firemen, complete in their full gear, come through the door. I feel Liam's body tense with excitement at seeing his beloved firemen. They asked if we lived there. I said yes. They asked if they could come in our apartment to try and find the reported water leak. So in walks two firemen, Liam is completely in awe that his house is hosting firemen, to try and find the source of the water leak. They stand by the window shining flashlights. Liam stands at the windows with them to peer out with them. They see the leak – a water tower across the street is leaking. Liam sees the leak. They thank us and leave. And Liam's gray mood seemed to disappear. Marge notices the time – it's almost 10 p.m. which is when the garage closes. I decide to go to the police department to see if they'll let Marge park in one of their spaces for a bit. I walk into the police station. There are six officers around. The woman at the desk abruptly and without much kindness in her voice asks what the problem is. When someone has that tone of voice, you really don't want to explain the whole "my son has cancer" thing. It's too personal to share with someone who is being impersonal. So I take the approach of "we live next door – I've been in here with my son" in hopes that someone will recognize me as the mom whose son has cancer. Instead, an office I don't recognize comes from behind the desk to ask how he can help. I do a quick summation of his character to decide if I want to "tell" him. I cautiously go into my speech of "my son has cancer…a friend is over helping us out…could she possibly park in one of your spots for a bit?" I still find it hard to tell people that Liam has cancer. My Liam, my sweet Liam, can not have cancer. It's just not possible. The officer tells me that my friend can park in one of their spaces. No problem. And as he's walking me out, he tentatively says that his daughter was treated at Sloan. I even more tentatively ask how she's doing. He tells me she's in fourth grade and is doing great. I then ask what kind of cancer she had fully expecting him to say one of the other nine pediatric cancers that are treated at Sloan but not neuroblastoma. He tells me she had neuroblastoma. OK – this is just unbelievable. Statistically, I shouldn't randomly be meeting another neuroblastoma parent. It just doesn't happen. So then I reluctantly ask what stage she was. I'm reluctant because I want him to say stage four, but I'm sure he'll say stage one or maybe two. He says four. I felt my knees get a little unsteady. His daughter, who is now in fourth grade, is a stage four neuroblastoma survivor? The odds of me meeting Sgt. O'Grady are not ones any Las Vegas bettor would want to wage. But yet here in front of me was the father of a stage four neuroblastoma survivor. It is very comforting to me knowing Sgt. O'Grady is right there…right next to us…and that if we need him…he'll be there for us.

Gretchen

Tuesday, April 24, 2007

Tuesday April 24th Update (Part 2)

The good news is the reason there was a 4 day lag between the beginning of the last posts train of thought and the completion of it was that we went and turned the pile of sticks and stones into a home again even if it was just for 36 hours. Gretchen called me Friday morning to tell me that Liam was found to have already bounced back and his white counts were on the rise meaning he was no longer neutropenic! The bad news was he would need a platelet infusion on Sunday based on their calculations. Going home Saturday morning only to have to come back late Saturday night was going to limit the time Liam would be able to spend at home and I was not happy about this to say the least. I asked Gretchen for the count readings from Monday, Wednesday, and Friday so that I could calculate the rate at which his platelets were dropping. The concern was that by Sunday he would be at 20 or less and it was at this point that he would need them. My calculations proved that he would be at 20 by Saturday morning and he would qualify for an infusion before Sunday and if this was the case we would ensure that Liam had the better part of Saturday and all of Sunday on the ground in NJ with his dogs, bright sunshine, and some good friends who just happened to return on queue. The team at Sloan agreed with the plan and I am happy to report that the gamble worked. Liam was measured at 21 early Saturday morning and they agreed to fill him up so to speak. The drive back to NJ that afternoon was not as pleasant as planned. We had expected a 45 minute blast with no traffic but instead we found ourselves in a construction induced time warp. Two harrowing hours later after enduring Ella’s endless screams for food and Liam’s two very smelly and concerning diaper changes we arrived safely. Upon arrival Liam felt hot and the rather runny diaper changes had us concerned that something was not right. Gretchen held him in the backseat most of the way home. I contemplated how I would explain to a police officer if I was pulled over for speeding that our child was sick and he needed to be held by his mother so this it the reason he was out of his car seat. I wondered what the look on the officer’s face would be and his reaction when I asked what was more dangerous the cancer that he was battling or sitting in the backseat being held by the one who brought him into this world. On one hand I felt like Britney Spears, a rebel and a fool but on the other we were doing what was needed to comfort him and the alternative was Liam getting himself worked up, then throwing up, and then a fever, and then back to the hospital, and surely on a feeding tube because if he didn’t eat this weekend that is what he was going to face very soon. We did what we felt we needed to like it or not. Obviously I feel guilty about it but when I was a kid thee were no such laws and I spent most of my time climbing back and forth from the front seat to the backseat while my mom drove down the road in her massive Delta 88 that by today’s standards likely had a NHTSA crash star rating of negative 4. What we need is a law against childhood cancer…sounds silly yes but we have much stupider laws on the books these days. I was convinced that the reason Liam had a really loose stool was because he had been eating nothing but cheese puffs. Yes cheese puffs but healthy organic ones with a very healthy does of fiber. He had eaten almost a bag a day for the last three days and this fact coupled with a significant intake of apple juice and you get the picture and the reason for my theory. It turned out Liam did not have a temperature but was just overheated from being snuggled up in Gretchen’s arms for part of the ride home. He and Ella had fallen asleep about 10 minutes from home versus 2 hours ago when we left the city as had been our hope and plan….figures. When Liam woke up and realized we were home the smile on his face and the twinkle in his eye made the ride more than worth while. Ella let out one of her high pitched yells as her means of approval. We were home together, the trees were about to bloom, birds were chirping, spring was in the air, and our world was righted again. Liam rode the tractor, played on the swings, went down his slide, played with the dogs, and walked along the stone walls, visited with Grandpa Jack, and hung out with me doing little projects here and there. He had to see every bit of our property as if to be sure that it was as he remembered. I realized just how much he missed it and it made me sad for him. It was when we went to see the fish in our little pond that we had the biggest surprise of all…FROGS!!! Not just 1 frog… but 5 frogs in total. The same number that we had last year so it appears as though they all wintered over in our pond and were back to fill the pond with tadpoles again fro Liam’s amazement. We tried many times to try and catch one but they were just too fast for us. Like I said all was good and only one thing could make this magical weekend better and that was if Liam would eat. Eat he did….just a few hours before we left he decided he wanted chicken tenders and has not stopped eating them. He has had them for breakfast lunch and dinner and last night we witnessed a chicken tender eating marathon where Liam ate 7 pieces dipped in ketchup. He polished off 3qts. of “Magic Juice” ( a really healthy smoothie consisting of blueberries, apples, bananas, oranges, and a few other fruits and nothing but fruits…no added sugars, or water. It has something like a 100% of 10 or so vitamins and minerals and he absolutely loves it. We call it magic juice because he thinks its cool and because it is really magic the way that it fills him up with the stuff he needs to build up his strength and he makes it disappear from his sippie cup like no other beverage we have given him. Magic it is…….

We are looking forward to another weekend at home with Liam this coming weekend surrounded by family, play, dogs, 5 frogs, and nothing but love and hope as we build strength to face next weeks hurdles. I did want to state again in case it was missed or not yet mentioned that Liam is scheduled to have surgery next Wednesday on May 2nd to remove the remainder of the tumor. We have a CAT scan this Wednesday to get a feel for how much the tumor has shrunk and what the surgery will be dealing with. It is going to be a busy few weeks for us. Weeks of great stress and likely the most trying week or two we have had to deal with yet. Liam will undergo what will likely be many hours of surgery and then days in ICU and the step down POOH unit. We will be in the hands of our dear friend Nurse Reese when Liam reaches the step down POOH unit though she has already warned us that Liam will likely hate her and we will wonder why she has to get him up walking so soon after surgery among some of the other less pleasant and painful tasks she will perform. We know though that everything she will do will be to get him better and to help him recover. She has been very caring and supportive of us and we would want none other during what will be very trying days and nights for us all. For all of those praying and sending positive energy it will be needed more than at anytime during this ordeal so far. Tell everyone you know to think of him and to wish him strength next week. Thank you again for all of the support that so many of you have provided and continue to provide. The meals have allowed us to eat and have given us needed energy, the kind words help us go on and reminds us that we are not alone, the prayers bring a greater power to our cause, and the donations and fund raising efforts have touched our hearts and help allow us to provide Liam with the best treatment possible, the selfless act of donating blood provides a needed resource for Liam and other children in his same shoes, and each and everything that anyone of you have done for us has not gone unnoticed or unappreciated even if a thank you card has not been sent. We could not have gotten to this point without the help of so many of you. Like so many people find in cases like this it is the people they most expected to be able to count on who don’t seem to come through for them but it is the people you least expect or don’t even know who really seem to rise to the challenge and exceed every possible expectation with their generosity, selflessness, and angelic acts of kindness. I find that no matter how you may try to get some people to understand what your needs are some just don’t get it. Some make it about them and others just don’t know what to do. It hurts the most when these people end up being family members or very close friends. We thank those angels whose wings have protected us and lifted us and you know exactly who you are. You are the ones who are there for us week after week, who sense what we need, and who attempt to understand our pain and fragile state. We love you.

Larry

Tuesday April 24th Update (Part 1)

It is now 4 days later, early Tuesday morning April 24th. I will try and pick up where my last entry ended due to exhaustion but I may have lost some of the original motivation. The point I was heading toward was that our house is not home without Gretchen, the kid’s toys strewn about, and the dogs underfoot. It felt empty, lonely, and of no purpose. It was a harsh and stark reminder of just how much our lives have changed. We are living in New York City but not by choice, Ella has no yard to run around in and she is in love with the outdoors and our dogs. The dogs are living in Pennsylvania with Gretchen’s mother and I worry about Goldie our lab running away and losing the loving family she spent the first 2 years of her abused life searching for in a garbage dump and foster homes in Louisiana after being abandoned as a newborn puppy. The dump trucks, tricycles, wagons, and tractors that exist to be pushed pedaled, pulled, and driven around our house by Liam sit idle longing for him to return. I walked into Ella’s room on my way to bed and it smelled like my sweet angel. Several building blocks were scattered across the floor as evidence that the sound of laughter and play had filled this room but it seemed like so long ago. I walked down the hall to the room I so loved to spend Sunday mornings. The door and the safety gate sat open to the dark room that I loathed to enter but so needed to feel close to my son who was a world away from me this night. I cannot put into words the feeling of entering your child’s room under these circumstances and will not even try to for there is no way to do the feeling justice, though to be honest it is a feeling that deserves no justice and should be banned from this earth so that no other parent should have to feel the cold, empty, soul draining, misery that it bestows upon it’s victims. I entered Liam’s room and went to the side of his bed. I was flooded with images of him lying there surrounded by his puppies, books, toys, flashlights, and all of the other objects he took to his land of dreams each night. How he could sleep with so much stuff in his bed I have never understood but it is Liam’s way. Many nights while checking on him I found myself removing hard uncomfortable objects from under a leg, his side, or from his clutch, all while trying not to wake him. But tonight his bed was empty, free of toys, and random objects of his affection. I am filled with worry for the surgery that is just around the corner and with hope that we are home soon as a family and that the love, life, and laughter returns to make this pile of sticks and stones a warm and welcome home again. I have to go and wake Gretchen so that we can give Liam the shot that helps his white blood counts continue to rise. How would you like to be woken from a sound sleep and given a shot minutes after your eyes were open …right… now imagine being 2 and the two people you trust the most are violating this trust. Now think about what it feels like to be the one doing this to him and you have not even had your coffee yet. Yeah it pretty much sucks as much as you can imagine x 1,0000 maybe. Oh wait add that now while your child is still screaming you have to run out the door leaving your wife to calm him because you have a conference call that starts in 15 minutes. Better yet add that when you get to the office you find that the conference call you left a situation where you were truly needed did not even happen due to a scheduling error. Yes I know… you cannot imagine….it’s ok you don’t really want to.

Thursday April 19th Update

Last Wednesday evening I went back to our home in NJ to take car of some things at the house and came back to the city Friday morning. Friends visited with Gretchen and the kids while I was away. Gina Provenzano who has been so very supportive stayed the night one evening and Marge Perry came over and cooked dinner for Gretchen and I think was with her until after 1:00 in the morning. Marge is an instructor at the Institute of Culinary Education so when she cooks for you it is quite a treat and a treat Gretchen certainly deserves. Gina is one of the few people Liam is willing to spend some time with and not require Gretchen to be right by his side. Needless to say I was comfortable being away knowing that Gretchen and the kids had such caring souls watching out for them. Ok I have to stop and add something completely unrelated….I just turned around to find Ella wearing a NYC Police ball cap and to make it even better she was wearing it backward like a catcher, something she must have known would make me even more proud. Ok back to the main topic. While I was in NJ I realized that spring was suddenly upon us and the land around our house had signs of it everywhere. The Bluebird couple we had courted 2 years ago had returned and I swear the vibrant blue male while sitting in the river birch tree outside our kitchen window was looking at me as if to say hello …nice to see you again…by the way how about filling the feeders? The Eastern Fly Catchers were back and chasing each other around in what was most likely some act of aerial foreplay. Our resident bear has made it known that he too is back in the valley by bending over the steel poles supporting our bird feeders and ripping the tops off of them to get at the black oil sunflower seeds. He will count on the sunflower seeds, early grasses, and occasionally our garbage until berries and other natural food sources are available. I am sharing these observations because they are just a few of the things that I look forward to each year and that I use as my barometer of the change and renewal that comes with spring. Spring is a special time of year for all living things and this year it is bitter sweet for me. I truly enjoyed the signs of spring at our home for we have worked very hard over the last few years to encourage nature to flourish all around us and to be able to share this natural world with our children. Liam had more fun last year with the frogs in our small pond than any toy he has ever been given. I realized while standing in the kitchen Thursday night around 1:00 am that the house felt sort of strange to me. The kitchen was not right and it felt as if something was out of place. It did not feel like the kitchen that I always felt so warm and comfortable in. I looked around to see what might be out of place. Anyone who knows me well can enough can attest to the fact that if the coffee maker was 3.25 inches to the right of where it was supposed to be might be just enough to cause this feeling in me. It was not the coffee maker out of place or anything as easily rectified or irrelevant by some people’s measure. It was my wife. She was not here in our house with me and it is she who makes wherever we are together home and my safe harbor. It was too quiet, too neat, and too empty. How could our home suddenly feel like little more than a hotel room? The place we spent so much time, energy, money, and planning to get just to our liking suddenly feels different. ieeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee…ok I am going to leave the above as proof that I just dozed off and woke to find myself holding down the “e” key. Ghv….ok did it again…. I give up I will continue this line of thought in the a.m.…I need sleep.

Larry

Tuesday, April 17, 2007

Tuesday April 17th Update

So we are now in the week following the completion of his third week of chemo and I can now see how the combined rounds of chemo have tired my son. It is apparent to me now that Liam knows he does not feel well and he is careful about what he eats, how he moves, and it seems that he is conserving energy by limiting unnecessary movements, and displays of emotion. Everyone now and then he is overwhelmed with excitement and he reacts the way that you would expect a 2 and a half year old to react but he quickly catches himself and seems to turn it down some. He is generally happy and in good spirits but it is all relative to his situation. One of the hardest things for me to accept is the treatment process that appears to be hurting the one I have sworn my life to protect. It is hard to accept that what is capable of killing him is actually the one thing that can help him even if it is in some sinister way. It is really hard to accept this knowing all of the potential short term and less known long term affects of the chemo doses that Liam is receiving. The only way to stomach the treatment is to face the uglier truth of what no treatment would ensure. Processing the reality of the world we have been thrust into is so difficult and consuming that there is no way that anyone can truly understand the pain and fear no matter how hard they might try to imagine.

I have been reading the diary of a father whose daughter was diagnosed and treated for neuroblastoma a few years back (she remains free of cancer) and who chronicled his feelings and days very much like Gretchen and I have been doing. In one entry he attempted to explain what it is that we as “cancer parents” feel and there really are no words or examples that can come close to giving friends and family a small taste so that they can possibly better understand what we face each day and what it takes to do so…. What it takes to get up each day. What it takes to keep Liam going, What it takes to keep each of us going, What it takes to be sure that Ella is loved like she so deeply deserves and that she gets enough of each of us, What it takes to work and not feel guilty, What it takes not to work and not feel guilty, What it takes to manage and care for two homes, What it takes to appear happy, What it takes to hold back the tears that so often want to flow, What it takes to not know what each and every day holds for your family, What it takes to have to live in a hospital, What it takes to face next weeks treatment, What it takes to eat, What it takes to sleep, What it takes to listen to others talk about their trivial problems and appear like we care because it seems trivial when compared to what we face each day, What it takes to deal with insurance issues, What it talks to deal with vague answers from doctors and nurses, What it takes to deal with differing answers from doctors and nurses, What it takes to deal with nurses who don’t respect our sons feelings and fears, What it takes to wake your sleeping angel up at 7:00 am to take him for chemo, What it takes to live in two different worlds… the one at MSKCC where everyone’s kid has cancer, or the one where we are the ones with the kid with cancer and everyone else’s is healthy, What it takes to look friends in the eye and manage to keep it together, What it takes to explain to people how Liam is doing when they ask, What it takes to hear statistics, What it takes to look my son in the eyes without feeling fear, What it takes to write this, What it takes to hold him in my arms and not have him know that I am crying, What it takes to sing twinkle twinkle little star to him and not have him hear my voice crack, What it takes to really accept that nothing is currently in your control when you are a control freak, What it takes to accept that life as you knew it is forever gone, What it takes to bear the pain of knowing Liam’s pain, What it takes to think about what Liam must be thinking, feeling, wondering, dreaming, fearing, tasting, seeing, wanting, missing, hating, hoping, What it takes to read the NY Times story on cancer’s and accept the glaring omission as anything other than your new purpose in life to force awareness, What it takes to convince some family members that it is not about them or any of their small challenges but all about Liam and his life and death fight, What it takes to let yourself feel, What it takes to not be angry, What it takes to laugh, What it takes to let others help you, What it takes to accept charitable donations, What it takes to not hate those who you expect to help but don’t, What it takes to answer the question “how can I help” or “what can I do for you guys”, What it takes to not look as numb as I feel, What it takes to not cry when hugged and to actually remember to let go, What it takes to parent a sick child and not feel guilty for having to say no, What it takes to breathe, What it takes to stay positive. The answer to what it takes is really rather simple. What it takes is love. But not just any love. It is a love like no other love a human will experience and for that matter no other pain. What it takes is love created by a genetic bond between parent and child that is only fully realized and appreciated when this bond is in some way threatened. Cancer threatens this love and bond to its core and it is this feeling that is impossible to imagine even as loving parents. In the wild the most dangerous animals are those who feel their young are in danger and who attack in response to this fear. We as humans have this built in defense as well and it is this defense that keeps us going when we feel we can take no more. What it takes you?...... Whatever it takes………………

Larry

Monday, April 16, 2007

Monday April 16th Update

On this grey Monday, I find myself particularly dreary. I’m tired, scared, and so sad for my son and what he is enduring. I just want him to be well and would do anything in the world to cure him. I’m tired of the ambiguity of doctors and need someone to confirm what I know in my heart – that he will get better. Of course, no one will and I just need to continue to remain vigilant in my belief that the cancer that has invaded my son’s body will be eradicated.

After reading a piece in yesterday’s NY Times “Week in Review” section, I’ve been toying with writing my own op-ed. The piece was on how, despite three high-profile people disclosing their cancer diagnoses, cancer cure (or maybe it was mortality) rates are actually greatly improving. There were all kinds of stats and graphs for all kinds of cancers…but one glaring omission…not one children’s cancer was mentioned. NOT ONE. One of the troubling things I’ve heard since being a part of the children’s cancer community is that as a whole, children’s cancers receives a pittance of the research dollars raised. And drug companies are not as interested in spending the money to research cures because kids can’t vote and aren’t famous and therefore drug companies don’t care as much about them. The fact that 3F8, the mouse antibody that Sloan-Kettering pioneered, has been around for 20 years but not one drug company has been interested in manufacturing it because of the costs involved is so disheartening to me. Can you imagine this? This drug is still “experimental” after 20 years because no drug company wants to invest the money to manufacture it. I’ve also been told that mainstream media doesn’t think much about children’s cancers because, after all, there aren’t a lot of famous children and therefore a child being diagnosed with cancer isn’t going to generate the interest that a famous adult would. Now, I haven’t been able to confirm any of this…but yesterday’s piece in the Times makes me suspect that what I’ve heard is probably true. If children are our most precious resource, then why wouldn’t we care enough about them to cure them? Why? What do I need to do to change this? Do I need to parade Liam in front of the three networks so that they’ll care? Should I have stopped Matt Lauer when I recently saw him and his wife taking a leisurely stroll with their child who looked to be about Liam’s age? Would Matt have cared that the stroller next to his child’s had a child battling cancer? I wonder if Matt is as ignorant to silent cancers that impact primarily toddlers like I was a few weeks ago? Should I have stopped him on behalf of all the children fighting children’s cancers? Should I stand in front of the windows of Good Morning America, The Today Show and CBS This Morning with pictures of Liam so that they can see the sweet, happy, energetic, wondering face of a child with cancer? What do I have to do to get someone of Oprah’s stature and influence to get attention for these horrible diseases that try to rob parents of their sweet children and society of our supposed most precious resource. Maybe it’s all lip service.

Tips for being a friend to the caregivers

As a friend of Gretchen and Larry, they asked me to share my own top ten list of how best to respond to friends in a crisis during a time of healing. My husband was injured in Iraq and our lives changed in an instant like the Holt-Witt family. During my journey, I learned some important lessons about how to behave and how I wished others would behave toward me. I wanted to share them with all of you.


1) Don't approach Gretchen, Larry and Liam with tears in your eyes. It makes them feel as if they have to use precious energy to buck YOU up. If you can't keep your tears to yourself, come back when you can or write a note.

2) Don't ask questions that make them recount the whole ordeal, the facts and statistics. Just take your lead from them when it comes to conversation. I loved it when people just picked up from where we were, not where we'd been.

3) An illness like this is a draining, draining grief, so different from a death. They are grieving an ambiguous outcome at the moment and hoping like hell for the outcome we all want. This takes an incredible amount of energy. They do not have the luxury of falling apart.

4) Do not repeatedly tell them to eat or sleep. They cannot. They are operating on adrenaline right now. Food is only fuel, sleep is hard to come by.

5) Don't expect Gretchen or Larry to get back to you by phone. All of their energy right now is on Liam Liam Liam and then Ella and then lastly, themselves. You might imagine they have some idle hours just "sitting by his bed" in a hospital. Wrong. They are talking to doctors, going to procedures, focused on their child, worried about their daughter, torn in many directions and time evaporates -- day and night are the same.

6) Don't be afraid to acknowledge their pain, if appropriate. It’s OK to say "This sucks." Don't ever say "God doesn¹t give you more than you can handle" or "things happen for a reason" or "you are so strong." Those kinds of greeting card platitudes should be illegal.

7) Stuffed animals are useless. Food can always be given to the hospital staff-- bribery does work to get kinder, gentler, more attentive care.

8) When you talk to or look at Liam-- treat him like a person-- not a patient. Get down on his level and look him right in the eyes.

9) Don’t try to pry them away from the bedside for a quick meal or a walk around the block. They may not ever want to leave his side and that's just fine. Take your cues from them -- always.

10 ) Subscribe to the "chit system." A wise man told me in the midst of my crisis when everyone was asking what they could do to tell everyone they have one chit. And at some point in time you will ask them for a favor. It could be as simple as bringing over a pizza or driving a kid somewhere -- or as complicated as dropping everything and being by their side, no matter what is happening. But all of those people who want to help, will have their chance. So get ready all ye buddies of Gretchen and Larry, that means you. To be needed in that way is perhaps the greatest honor of being a true friend.

-Lee Woodruff

Sunday April 15th Update

One thing that became clear very early is the importance of having a strong support network. Everyone has heard the phrase that it takes a village to raise a child, and as the mother of two young children I can attest to that statement. But if raising a child takes a village, than healing a child with a life-threatening disease takes a city the size of New York. We continue to be humbled and amazed at the outpouring of love and support. It bolsters and replenishes our spirit, keeps us strong, and gives us a boost of energy we need to keep going. We are so lucky, so blessed, and so fortunate to have the most amazing quilt of people protecting us and keeping us warm. And every day, at the end of the day when I read Liam’s blog to find strength in the posted messages, I am amazed at how the circle grows. I read those messages over and over again. Below is a “guest blog entry” from a friend who, like so many, unselfishly gave up personal time to help us. I thought it might give some insight into what a special child Liam is.

Recently, Gina Provenzano and I helped the Witts move into their NYC home on 30th street. Larry had gone home to NJ to pick up Ella and pack up and move on that end, while Gina and I went uptown to help Gretchen pack and move. It was a busy day that Liam took completely in stride. He didn't stop- loving the company, running and trotting up and down the 69th street apartment hallway. When I arrived in the afternoon he and Gina greeted me with smiles at the elevator - excuse me I meant alligator. :-) He played the whole day-even skipping his nap. Liam is getting medicine 24/7 through a pump that is carried in a backpack and someone must be with him so that he is free to move about as he desires. So, while Gretchen and I packed, Liam and Gina hung out working on playdough projects, drawing, exploring the apartment hallways and accompanying me to the laundry room. He pretty much kept Gina on her toes the whole time.

It wasn't until the evening that we were finished. Gretchen and Liam, and I rode down to the new apartment in a taxi, which pretty much made his day. Like he had done to Gina and I all day, he completely charmed the taxi driver who played the Red Stop/Green Go game with him the whole way there. "Faster faster," was Liam's cry as the taxi driver shouted out Liam's name and offered high-fives. Such an amazing, sweet, and loving boy. While Liam and I waited for Mom to grab the stroller, he wrapped his arms around me and said "I love you.". Well, I was already smitten, so that was pretty much the best thing that happened to me all week. I am definitely looking forward to the next time I will be able to visit my new friend.

I think Liam liked the new home. He and Gretchen and Gina went off to investigate all the rooms. We got everything put away and some of the very basics set up. Although Liam had already had a sandwich and chocolate milk, he sat with the three of us for a bit while we refueled with some of Elizabeth Karmel's BBQ. But then he got a bit sleepy. Aunt Gina and Gretchen were on it-and Liam was set up with a cozy situation on the couch with covers and Caillou. He was probably pretty much spent from our pre-dinner boogie and march around the table to Play that Funky Music! Not too much later, he was sound asleep and Gretchen had to keep reminding me to lower my voice while we took a few minutes to talk and decompress a bit from the hectic day.

Some Details:Gretchen talked about how well Liam responded to having people around and is hopeful that people will be able to visit once they are settled in. So if you do visit please know that as soon as you walk in the door to the Witt home you MUST thoroughly wash your hands. And always be vigilant on the dirt and germ front--rewashing or sanitizing when needed. And if you are sick, were around someone who was sick, or think you might be getting sick DO NOT even consider visiting. Liam cannot afford any chance of getting sick.

- Cheryl Slocum

Thursday, April 12, 2007

Thursday April 12th Update

It’s the afternoon. Liam is sleeping…it’s a drug induced sleep…not a natural one. He’s receiving a blood transfusion to “top off his tank” since his red blood cell count was low. He was given Vistaril to counteract any reactions his body might have to the blood he’s receiving. Vistaril makes him very sleepy. He’s curled up on his side; surrounded by his 12 “puppies”; head on his beloved elephant pillow that goes everywhere he goes; covered in the “really, really, really soft” yellow blankie his selected as the lucky one to go to the hospital with him today; and gently sucking on his pacifier. (Yes – I know – he shouldn’t still be using a pacifier but it’s one of his greatest sources of comfort right now). Every few minutes I see the pacifier move in his mouth and it reminds me of the movement a bunny’s nose makes. He fell asleep watching a new Caillou DVD a dear friend brought to him today.

Guess what I just found out? Liam’s blood type (O-) is the rarest blood type available. I always thought it was AB, or A, or B. But O- as the rarest…who knew? Liam’s blood type can be given to anyone, but he can only receive O- blood. His surgery to remove the tumor that remains after three rounds of chemo is scheduled for May 2nd. We’ve been told to anticipate surgery lasting from 11 – 17 hours, something I can’t quite comprehend. What does one do for the period of time as you’re waiting to see the door open and the surgeon to walk through with a giant grin on his face saying, “we got it all”? If you’re reading this and have O- blood and don’t have plans four days before Liam’s surgery, please come donate for Liam. He’ll need blood during his marathon surgery and blood takes several days to process. And remember…one donation from an adult is the equivalent of two transfusions for Liam.

Tuesday, April 10, 2007

Tuesday April 10th Update

It's early Tuesday am. Liam is hooked up to a drug that flushes fluids from his system. It's intended to get the "sis-plat-num", the chemo drug that can cause hearing loss, out of his system as quickly as possible. Will it get it out fast enough to prevent hearing loss? As Liam sat on my lap during his hearing test on Monday am, I was wondering if high frequency hearing loss included hearing birds sing.

Continuous fluids mean continuous diaper changes. After his last diaper change...which required new sheets and jammies, Liam wanted his feet rubbed...one of the things since being diagnosed has become one of his greatest comforts. As I rub his feet, I sing my version of "Rain, Rain, Go Away." My version is about cancer. "Cancer, cancer go away. Don't come back and stay away." And as I'm singing I'm willing with all my might for the cancer cells to go away....forever.

Monday, April 9, 2007

Monday April 9th update

It’s the weekend. We’re back at our home in NJ…all of us…it’s wonderful, strange, and difficult. It’s the first time Liam and I have been here since February 26th. After his bone marrow test on Wednesday, we were cleared to go home for the weekend. We were going to leave on Thursday, but Liam was still in a lot of discomfort from the test and we didn’t think a long car ride would be too comfortable for him. On Thursday night we told him that we were going home the next day, and from that moment on he was fixated on home. It was all he would talk about. And the two things he said he wanted to do, in this order, were to go for a tractor ride with daddy and make a cake with mommy. He couldn’t stop talking about his doggies, being outside (I suppose you can take the kid out of the country but you can’t take the country out of the kid), and going shopping. (Yes, one of Liam’s favorite activities is grocery shopping with mommy. It was the only thing he requested after being discharged from the hospital last week and our first activity the next day was going to Whole Foods.) Liam couldn’t wait until we were in the car on the way home. It was all he talked about from Thursday night until we were in the car on Friday afternoon. And when we finally got in the car, he forced himself to stay awake. He fell asleep one exit before the exit for our home.

When I walked in the door the first time, my first thought was how different everything looked. I was convinced that someone changed the countertops. They weren’t that dark when I left. It was very strange to me - everything looked the same, but nothing looked the same. I felt like a visitor spending time in someone else’s home and I fought the temptation to get too comfortable knowing that I would only be there for 48 hours. Liam, on the other hand, reveled in being home. He woke up from the grey mood he had been in since the bone marrow test and as every minute went by, showed more and more of his carefree personality. It was so amazing to watch the transformation. In fact, as soon as he got out of the car…before even going in the house for the first time…he wanted to go for a tractor ride. Of course Daddy was more than willing to oblige. We spent the entire weekend savoring each moment together and enjoying each other’s company with no mentions of “stickies,” (what Liam calls the bandages that cover his central line) or of the other dreaded parts of his new routine. But as much as we tried to escape, there were the reminders when we had to give him Nystatin (something he takes 4xs/day to prevent mouth sores) and that he is so familiar with he calls it by name. The first time he said the word Nystatin, it made me very sad. Nystatin is not the first three-syllable word I wanted my young son to say. One of the more challenging moments for me was trying to answer Liam’s question about when he would be going to school. He talked about it a lot wanting to know if he would be going to school the “next day.” At one point I caught him talking to a giant card made by his teachers that has photos of each child in his class. He was having a conversation with his classmates about snack time. (It figures…the child we’ve had so much trouble trying to get to eat is fixated on snack time.)

I suppose it is fitting that our first weekend home is a time of such importance to both Christian and Jewish faiths. Our return home felt like a time of renewal, affirmation and community. It was a new beginning for all of us. The life I had when I left the house on February 26th was gone. None of our lives will ever be the same. But that’s not to say it’s all bad. In fact, our lives now are very much in the present tense and everything seems a little sweeter…from making a cake and laughing with Liam as he evaluated the flavor of the icing we were making together, to watching my two precious children play together and enjoy each other’s company in the only home they’ve known in their short lives. Ella was so happy to be in her home with her mommy, and Liam spent a lot of quality time with Daddy, just like he used to in the “old” days.

Thursday, April 5, 2007

Thursday April 5th Update

Below is a note from Mary at the Sloan-Kettering’s Blood Donation Center. If you have thought about donating but haven’t yet…we encourage you to do so. Even if you’re not Liam’s blood type, blood donated in his name can be used as a credit for Liam when he does need blood or platelets. Think of patients like Liam’s girlfriend Jessie who lives in North Carolina and doesn’t have anyone here to donate for her, or the cute little boy from the U.K. who is also being treated for Neuroblastoma who has been here with his parents for about a month. For more information on donating blood, click on the “blood drive” link.



Gretchen,
If there are people willing to donate, please encourage them to do so. Even if the donations are not used by Liam, many patients have no one to donate for them, many of whom are children. They may be from out of state or even out of the country. There is always a significant need for blood products in the treatment of cancer.

Many thanks to you and your family and friends for their generosity.

Mary

Tuesday, April 3, 2007

Monday April 2nd Update

We’re out. Late yesterday afternoon I asked if Liam’s blood counts be tested again to see if they increased enough to earn him a ticket out of the hospital. Normally blood is tested once/day at 3 a.m. but I wanted to try and get him out on Monday night instead of having to spend another night in the hospital. They drew his blood at 4 p.m, and we nervously waited for the results. I was working in my makeshift office in the hallway outside Liam’s room (when I told Liam I had to go to work for a little bit, he reminded me to put on a jacket), Liam and Daddy were playing, and at 5:30 the fellow that helped spring us out of isolation came around the corner to deliver the news. She smiled, said “his ANCs are .9” and then told us we could go home. (.5 wins you a ticket out of the hospital.) Only one thing stood in the way of leaving – a dreaded dressing change. Unfortunately my attempts at making his dressing changes less traumatic didn’t work. It was as painful a process as ever that required three people. It’s nothing less than horrible for us and him. He was so exhausted from fighting the dressing change that he fell asleep in the stroller.

Rejoining society is always a weird thing…both Liam and I feel different after living at the hospital…and it feels strange to be back in a home. Liam only wants to be held and coddled when we first come home. It’s almost as if he’s afraid. He insisted on gathering all his beloved puppies (I think there are now nine) and elephant pillow and curled up on the couch watching Caillou on a portable DVD player that was next to him. He looked so delicate. But then, after about an hour or so in his non-communicative state, he all of the sudden got up and walked to his bedroom to get a toy. He then proceeded to climb into a empty box filled with peanuts and play with them. He loved sitting in the box – loved tossing the peanuts up in the air. And from then on, he was Liam…running around, diving onto the couch, playing, and giggling. It’s nice to be home.

Monday, April 2, 2007

Friday March 30th Update

We're back in. Late Friday afternoon, Liam's temperature began increasing and by 4:30 we were on our way to the Urgent Care Center. The Urgent Care Center at Memorial (what most of the people here call the hospital – not Sloan-Kettering) is a different kind of ER than you're used to seeing on TV. It's exclusively for Memorial patients which means it's only for cancer patients. From the minutes Liam and I arrived, he was not happy. He was crying because he had to leave his new home and go back to the hospital for a second time in one day. He was crying because once we did arrive he couldn't immediately go to the playroom. He was crying because he recognized that the Urgent Care Center was not part of his new familiar world. The only semi-bright spot was seeing Kenny, who checked Liam in the first time he visited the Urgent Care Center.

We were taken to an isolation room – they're the rooms with doors – not the main area with curtains between bays – and told it was because adult patients get upset when they have to hear children. His vitals were taken, he was evaluated by a nurse, and then we began the first of three long waiting periods during the evening. Liam was not happy and wanted me to hold him as he curled up in a fetal position on my lap and have me swing Twinkle Twinkle Little Star to him. The pediatric fellow on call, the one from Malawi we became familiar with during our first stay, came in to examine Liam. Because Liam had been crying, his nose was running. We went through the ritual of questions (has he been around anyone sick, how has he been feeling, etc., etc.) and then…because his nose was running…he decided to swab his nose to culture the snot. Here's where I screwed up. I should have told the doctor to please wait a while before making a determination about whether or not to swab Liam until he was calmed down. I should have insisted that he wait. But I'm still new at this and I didn't. Swabbing means a ticket to isolation for a minimum of five days, a sentence I knew wouldn't go over well with Liam. But I figured I could deal with that later…my immediate concern was calming Liam down and getting us a room. After a several hour wait, I think it was close to four hours, we finally were told a room was available for us on M9, the pediatric ward. Up we went in the alligator.

Liam had a difficult first night. He was not happy to be back in the world of seemingly constant poking and prodding. He was not happy to have an IV pole back in his life (he kept asking me to take it away), and he was not happy to be away from Daddy and Ella. But most importantly, he was not happy that anyone entering his room had to wear gloves, a mask, and a special gown that is thrown away as soon as they live the room. To Liam, a mask represents a dressing change…the activity he fears the most. So to see every person walking into his room wearing a mask was like him facing his nightmare over and over and over again. It was horrible. Someone would enter with a mask and he would immediately start saying, "The stickies are all gone! The Stickies are all gone!" It was his way of saying he didn't need a dressing change. I kept trying to convince him that no one was coming in to change his dressing, but he didn't believe me. As I sang him to sleep, I figured I could get the team of doctors who would be around in the morning to see that he certainly didn't have a cold and therefore didn't need to be in isolation. I tried to make the bleak room as happy as possible by putting out his treasured books, toys and other favorite things around the room as he slept.

Saturday morning Liam woke wanting to go home. When I told him we needed to stay in the hospital for a little while, he then wanted to go to the playroom. I told him the playroom was closed because it was being cleaned. Then he asked to go for a wagon ride. I told him I could bring the wagon into the room, but we couldn't leave the room. He said he didn't want to sit in the wagon, turned his back towards me, and stared at his music box with the birdies that move in a circle that was in his bed. He didn't want to eat, didn't want to drink, didn't want to watch Caillou, and tossed all his beloved puppies out of his bed. Alarm bells were going off in my head. I knew he didn't have a cold. I knew he didn't need to be in isolation. I knew I needed to get him out.

One of the reasons I truly believe Liam has responded as well as he has is because we've worked very hard to keep him active, stimulated, and engaged. It's an exhausting process keeping a 2 ½-year old engaged for 14 hours, the approximate amount of time he's awake during the typical hospital day, but it's our job. We make everything a discovery – from the way the food is delivered and collected, to watching the nurses gather supplies, watching the clerks wheel the blood pressure machine down the hall, watching people change light bulbs, identifying doctors and residents by the coats they wear, observing any "out of the ordinary" activities like adding new phone lines, and generally being a part of his new neighborhood.

As the team of doctors entered the room to evaluate Liam, I discussed with them my concerns about keeping Liam isolated. They politely listened but said that a policy is a policy. The attending physician, the equivalent of the president, seemed like he was slightly annoyed with me by abruptly ripping off his gown before he left the room as if he couldn't wait to get away from us.

As Liam continued to be despondent, I started my campaign to get him out. I talked with his nurse. I requested an early read on the culture. I requested that someone from infectious diseases come to evaluate the risk Liam posed to other patients. I requested reverse isolation – Liam could leave the room but only if he was gowned, gloved and masked. I asked for someone to explain the policy to me since I seemed to be hearing different versions and precedent had been set for an earlier release from isolation when we had the flu scare two weeks earlier. When I wasn't getting anywhere, I requested a doctor come in to discuss my concerns. A resident came in. We had a discussion that went no where fast and left me feeling like I had wasted my energy. Finally, I left the room and went to the area where the nurses and doctors sit to plead Liam's case one more time. I saw Heather, one of the fellows we worked with during Liam's initial stay, sitting across the room. I called her name and asked if she had a few minutes. She came out, I explained again my concerns about Liam's mental health if he was kept prisoner in his room, asked her to re-evaluate him, told he felt really unfair considering the circumstances under which it was determined he needed to be swabbed, and hoped she would listen to me. She told me she would investigate and get back to me. After about 30 minutes, she knocked on Liam's door, asked me to meet her in the hall, and told me that Liam was being released from isolation. Apparently it's the discretion of the attending physician, something she didn't know nor did anyone else on the floor, as to whether or not a child needs to stay in isolation. In Liam's case, he seemed symptom free and wasn't running a fever any more, so the determination was being made to release the socialization ban. I thanked her, turned around, opened the door, asked Liam if he wanted to go for a wagon ride, he smiled, said yes, and off we went.

We spent the weekend back in our routine with our "class." Jessie is back in patient. Liam spent time sitting with her in her bed coloring, walking the ward hand-in-hand with her as I trailed along pushing the IV pole, asking Joe's dad to show his tattoos over and over again, smiling and waving to the baby he fell in love with during our first visit, chasing after Rosemary his favorite nurse assistant, asking for cowboy (his other favorite nurse assistant) and trying to convince Lindsey that he needed to have his own IV pump to take apart and clean. (He didn't win that one.) A few times during the weekend he got angry and slightly belligerent, but generally he had an OK weekend even though he's back in the place he doesn't want to be.

One other thing we did a lot of this weekend was changing mommy's dressing. In an effort to make dressing changes less traumatic for him, I decided to get my own tubies and dressing. Lindsey rigged up two tubes for me that look exactly like Liam's, we attached them to my chest with tape, then added gauze pads over, and then put the same bandages on top that Liam wears. Liam was fascinated with mommy's dressing. When I told him it was dirty and needed to be changed, he couldn't wait to change my dressing. What amazed us is that the very first thing that's in the dressing change kit is a mask. We thought for sure he was going to toss it aside, knowing how much he hates them. Guess what he did when he saw the mask? Immediately put it on and then proceeded to change mommy's dressing. And wouldn't you know it…he did it in exactly the right sequence…from applying the solution that loosens the adhesives, to cleaning, reapplying gauze, and new bandages.

As of 3 a.m., his counts are up but not good enough yet to earn him a ticket out of here.

On another note, Liam is having a bone marrow test this week to see if the cancer is still in his bones. If you are reading Liam's blog and are a praying person/person who believes in the power of positive energy...we'll take a fresh round of prayers and good energy this week. Pray that the cancer is responding to the two heavy duty doses of chemo we've thrown at him. Pray that his little body can fight this horrible invader. Pray that he'll win this battle. I believe he will. But when our oncologist said to me this morning that he was really scared for Liam when he first met him, it gives you a sobering dose of reality. You don't want to hear an oncologist tell you they were scared. I want to hear that he's treated lots of cases worse than my son's and those patients are going great. I want to hear that this is a slam dunk - we can win this battle. I want to hear that my son will live. But unfortunately no one will tell me any of those things. All I can do is believe. Believe in my heart of hearts that we WILL WIN.