Tuesday, May 29, 2007

Since Liam’s surgery earlier this month, he is still receiving transfusions. Both blood and platelets are still needed; platelets a little more than blood. Just 3 days ago, Liam received a platelet transfusion and will need more. Continued support of donations would be greatly appreciated. Please call Marion Novack at (212)639-8177 to schedule an appointment. Marion is coordinating the schedule for Liam’s donors at MSKCC. Thank you.

Sunday May 27th Update

As of Monday's CBC test, Liam is still neutropenic but we've so far managed to avoid a hospital stay. Rounds 1, 2 and 4 of chemo are the same chemical cocktail which results in almost a 100% admission rate during neutropenia for a fever of some sort. During Liam's check up on Friday which included a blood and platelet transfusion, both of which were direct to donor (thank you donors), the doctor looking at him said to me to be prepared to be admitted at some time over the weekend. (Once you're admitted with a fever and you're neutropenic, you don't get discharged until your ANC's - a specific type of white blood cell - is over .5.) It's difficult because the fever could be gone (the last time we were admitted during neutropenia, his fever was gone after one dose of Tylenol), but until you're in the clear and have enough white blood cells to fight off infections…you have to be carefully watched. Since Friday when his counts bottomed, we've been giving him shots of GCSF, the medicine created at Sloan-Kettering by Liam's team of doctors that stimulates white blood cell production which will, in turn, generate ANCs. We have a small box of it in our refrigerator…on the top shelf next to Ella's yogurt. The box, which is about the size of a Pop-Tart, contains 10 small vials of medicine. I've been told that each of the vials costs $1,000. Apparently some families draw more than one shot from each vial. One of our nurse practioners has said that we shouldn't which makes each shot a fairly pricey one. And there the box innocently sits next to the baby yogurt fortified with extra vitamins and minerals that Ella devours. Knowing that Liam's day will be ended with a shot that he hates weighs heavily on both me and Larry. Recently, Liam has begun recounting things that have happened to him that have made him cry. He talks about the NG tube that had to be put down his nose pre-surgery to get the bowel preparation medicine in him (it took me, two nurses, and a doctor to restrain him to get the tube down and even then it was challenging). For several days, he has told me about the experience and how he cried. He also talks about "the last time he went to the hospital" and how he cried when his dressing was changed. It's this new thing he has been doing that makes me realize how much he is taking in despite our best efforts to minimize the impact on him. So to now be someone giving him a daily dose of pain is just plain lousy. Larry and I have to psych ourselves up to do it. My mantra is "short term pain….long term gain….short term pain…long term gain." The other thing that runs through my head every time I'm giving the shot is a line from an animated movie where an animal character keeps saying, "find a happy place, find a happy place" as he's going through a difficult experience. As soon as the shot is done and Liam kicks Larry out of the room for restraining him (Larry is always the bad guy in the process even though I'm the one administering the shot), I try to sooth Liam by talking about happy things as he screams that it hurts. And yes, it does hurt. As the medicine is going in, I've been told it feels like a continual bee sting. I recently read something about memory that said the earliest children have true life-long memories is age four. I so hope that's the case…but even if he doesn't remember exactly what has been happening to him the past few months, and I'm not so sure he won't, does all of this "stuff" we're going through have a lasting impact on his character and personality? Will it make him less trusting? Will he be shy? Or will he be more inquisitive having been exposed to all kinds of things from a floor polisher to stem cell collection machine. All we can do is treat him as normally as possible and answer his questions as he has them.

So at this moment we're still in this mini drama within a drama of avoiding doing time back on the 9th floor. Every hour that goes by that he stays fever-free, we're an hour closer to him not being neutropenic. We have no idea when his counts will recover…could be tomorrow, the day after, or two weeks from now. It could be that we'll go to the hospital tomorrow and find out they've already recovered. You just never know. But the sooner we can stop the shots of "G," the better.

Eating still continues to be a daily challenge but we're keeping up our roles as the witch in Hansel and Gretel in an effort to get him to eat. One day he likes one food and eats it voraciously (10 slices of bread on Saturday….yes, 10), the next day he refuses to even look at it. It has been particularly challenging since his surgery with entire days going by without him eating more than a bite of something. Last night he was resting on the couch when Lidia Bastianich's cooking show came on. Assuming he would have no interest in wanting to watch a cooking show, I picked up the remote control to change the channel. As soon as he saw the remote in my head, he loudly proclaimed that he wanted to watch the cooking show. So, we did. Together. He asked me what Lidia was doing every step of the way. He was especially fascinated with the curly pasta going in the boiling water. I told him that mommy and daddy know Lidia. When he heard this, he wanted to know if we could go see Lidia "right now." When I told him Lidia wasn't at home, he wanted to know if he could see her tomorrow. He then said that he liked Lidia and that she looked "nice." He hung on her every word and movement. She would make a point, he would nod his head in acknowledgement. After the show ended, he wanted to know if he too could have macaroni and cheese (what he calls all pasta). I made him promise me that if I went into the kitchen to make him macaroni and cheese, he would eat it. He promised. I didn't have high hopes. We have a refrigerator that houses multiple attempts of meals that Liam requested but refused to eat. I took him to the kitchen, made some macaroni and cheese, and to my surprise he ate three platefuls…by himself…one spoonful after another. So, it wasn't quite the macaroni and cheese that Lidia would likely serve. What I made came out of a box, but it was the organic kind and at least wasn't the one with powdered cheese but the "deluxe" version with the Velveeta-like cheese. What amazes me is the power of role models. Today he wouldn't eat macaroni and cheese, but he did eat almost two entire grilled cheese sandwiches in one sitting while watching videos of him and Ella, carried around a box of graham crackers all day that he snacked on, and drank his "magic juice" (the blueberry/apple/pear/blackberry/etc juice that he drinks a ton of that is loaded with calories). If only we knew what tomorrow's food of choice will be.

A few days ago Liam started using the word, "why," for the first time. I find it hilarious as we do these rounds of questions that always wind up in the same place…"just because." Right now he's very much into the fact that he was told that the butt paste container we're currently on was personally made by Ursula, the nurse practioner he is the most familiar with and, therefore, the most comfortable with. (Today he was having an imaginary phone conversation with Ursula and telling her he would see her soon.) As the butt past is being liberally applied during each diaper change, and we're going through close to 10 a day, he asks a series of questions about why Ursula made butt paste for him. What I love is that I tell Liam that Ursula made the butt paste for him because she loves him, and he wants to know "why."

Every day we take steps forward in regaining the personality he had pre-surgery. He's still very delicate both emotionally and physically, but he's starting to joke around which is an indicator that he's feeling better. This morning he surprised me and I literally jumped. He loved it and spent the day "surprising" me. Tonight as he was resting on the couch, he was tickling Larry's head and laughing. He's coming around. We just need to be patient.

Monday May 21st Update

As of Friday, Liam is neutropenic so we're back in high-alert mode trying to avoid germs lurking behind every corner and sneeze. It's true that chemo is feeling like an old friend, but it's even more accurate to say that chemo is feeling just old. We're over the stress and strain related to it. We're over the no-control-over-our-life that the chemical cocktail sessions bring. We're tired of knowing that we'll be back "in patient" but having no idea when. And, now that we think about it, we're just tired. But knowing that 3F8 treatment, the mouse antibody that causes pain so intense that it can't be fully tempered with the most powerful pain medication, is the next phase of treatment after chemo isn't exactly the pot of gold at the end of the chemo rainbow we were hoping for. But then again I suppose it is…after all it's only available at MSKCC and is extremely effective in searching out the remaining neuroblastoma cells and rendering them useless. And to know that 3F8s is just around the corner means we've come a long way. He's already received three transfusions this round of chemo, all of which have been direct-to-donor. The feelings you have as a parent knowing that the vital blood or platelets your child is receiving were donated by someone who wanted him to have them is incredibly powerful. When Liam is receiving the transfusions, I can't help but stare at the bag in amazement and gratitude.



The past week has been a fairly low week emotionally. It has been one that has tested our endurance and left all of us, at times, feeling completely spent. Most of the week, including his birthday, Liam was in his indifferent mode. He would want to have Caillou on but would turn his back towards the TV; he would want to be held in his special fetal position but wouldn't want you to talk to him; he would want you to bring him food but wouldn't want to eat it; he would want you to change his diaper but wouldn't want you to touch him; he would want to go to the fire station but wouldn't want to get out of his stroller or talk; he would want to see Ella but wouldn't want her to look at him; he would want chocolate milk but only if it was heated to the perfect temperature and if it became a degree too cool, would cry until it was reheated to the ideal temperature. The most challenging thing for us has been trying to decipher what he's saying, often through his pacifier. If we can't figure out what he's saying by his third attempt, he becomes a puddle of tears which leaves us feeling thoroughly useless as parents. We try and figure out what he's saying by naming all the items that might be in his line of sight…and when we get really desperate just name every item we can think of. This week he has pretty much wanted one thing…to be held when he's awake or asleep. There are times this week I've considered toting Liam along in a Baby Bjorn carrier like I did when he was an infant. He's lost so much weight that at 29 pounds, he'd meet the 35-pound weight restriction. Since he has been home from his last in-patient stay, we've been focused on coddling him and trying to bring him back to the land of the healthy. If he wants to go to the fire station…we're at the fire station. If he wants to go to the police station, we're at the police station. If he wants to watch the same episode of Caillou for the 75th time, we're happy to oblige. If he wants both of his feet rubbed simultaneously, we're rubbing them. We'll do anything to erase the memories of his stay and get him back to where he was pre-hospital stay. We're trying to keep his routine as normal as possible to help reground him.



Last Saturday Liam was still hooked up to chemo – the red one that looks like cherry Kool-aid. We spent the morning talking about his birthday and trying to get him excited, but he wasn't biting. He wanted to go to the police station, but when we arrived the door that the big Harley Davidson motorcycles are kept behind was closed. He wanted to go to the fire station, but once we got there he clammed up and wouldn't get out of his stroller. It was really painful to see him so down in the place that gives him so much happiness. To see Liam not want to walk around and talk to "his guys" was not necessarily surprising but still disheartening. OK – So I know it was only eight days post-surgery and he was still going through another round of chemo, but I'll admit I had hoped I would see a huge smile on his face when he saw the fire truck. Instead, he sat in his stroller looking indifferent. What amazed me is that without telling the firemen what Liam's state of mind was, they picked up on it and took over for him. They took him through the equipment he's already seen countless times and explained what each thing does without expecting him to participate, something I'm sure wasn't necessarily comfortable. They joined us in trying to coax him back into the land of the healthy. Liam got to see the ladder truck raise its ladder for the first time…something that normally would have solicited squeals of delight…but this day was met with a few reserved smiles. Every once in a while in a very soft voice he would say, "what's that?" which is all we needed to know he was there. He got to see a fire hydrant being opened for the first time which he enjoyed enough to ask to see another one being opened, which, thank goodness, the fireman was willing to do for him. He smiled when the car that was illegally parked near the fire hydrant got wet. The only time I saw a true smile was when he got to press the pedal from the passenger side of the fire truck that honks the loud horn. The noise made Liam whip his head around to find my eyes to show me his excitement. And then, as soon as the noise was gone, so was Liam's energy. After a several hour visit to Urgent Care to get disconnected from chemo and reconnected to fluids, we limped back home to New Jersey with a birthday cake that one of Liam's elves was kind enough to make and party goods in tow.


When we were about ½ mile from our home, Liam asked us to put his sneakers back on. When we pulled into the driveway, he immediately wanted out of the car and walked…on his own without holding hands...to the back of the house, down a flight of stairs, stopped at the large stone that holds his collection of glass beads that he calls his "treasures", around a large flower bed, down a steep hill to his swing set, up the rope ladder to the fort, and then announced he wanted to go down the slide. Unfortunately he was connected to fluids which come with a backpack that contains a pump and IV bag that weighs about 10 pounds…so instead Larry had to take Liam down the slide on his lap. To see Liam's immediate positive response to being home made the effort to go to New Jersey more than worth it. As thrilled as we were to see him walking and being more like himself, his burst of energy made him want to take a long nap. That's pretty much the way the whole week went…a burst of energy and then a long rest.



Liam's birthday was not quite the day we hoped it would be. He had a rough night leading up to his big day and was even more sensitive and tired on Sunday. The majority of the day was spent holding Liam or rubbing his feet while he convalesced. It's somewhat ironic that the majority of Mother's Day was spent holding my sweet guy who made me a mother thirty-six months ago to the day. The only birthday activities we wound up doing were unwrapping a few presents (but not all because he got too tired) and lighting the candles on his cake to sing to him. He enjoyed blowing out the three candles so much that he wanted to do it over and over again, something Larry and I were delighted to have him do knowing that it was good physical therapy for his lungs post-surgery. When we carried the cake with candles lit into the room he was resting and started singing "Happy Birthday," he got very silly and bashful and buried his head into his elephant pillow. We've decided a big party is in order for him after his immune system is not compromised because of chemotherapy.



A few things to share about the week.



- The continued support from so many people, many of whom we've not had the pleasure of meeting but whom we'd now do anything for, continues to simply astound us. It's a jolt of humility and strength to know that so many people are pulling for us and it truly makes us feel like we're not alone. How can one explain what it's like to receive a card or gift from a perfect stranger because that person cared enough about us to want to reach out? One of my concerns is that people who have been gracious enough to become a part of our family will not understand how much each and every gesture means to us. We wouldn't be where we are today without the continued outpouring of support. As I dress my children in an outfit that came from someone else, read a book given by an avid reader, play with a toy that someone thought would give Liam or Ella pleasure, open a card that has well wishes, wrap a shawl around my shoulders that was knitted specifically for me by a gracious stranger, eat food lovingly prepared for us, I give thanks and gain strength. This is an incredibly stressful and draining process and the support we've been receiving is like a shoulder to lean on.



- The day of Liam's first surgery date there was a blood drive on his behalf arranged by Sgt. O'Grady. Liam was already in-patient and I was with him at the hospital, but as Larry was on his way to see his he told me there was a line of people waiting to donate. Larry showed me a few pictures he took of the line of people which was longer than the picture could capture. Sgt. O'Grady has been in our shoes and knows what this road is like. He clearly was doing what he knew was best for Liam – the incredible gift of blood. We can't wait until we can do the same for someone else.



- We're no longer the "newbies" on the pediatric floor. There are newer diagnoses. On Friday, Liam decided he wanted to see Reece in the POU unit. He was so happy to see her he visited her three times. As we were going in during our last visit, Liam saw her and stretched out his hands to greet her. (Baby steps – he's coming out of his shell – but it's taking baby steps.) As we were leaving, Reece told a dad coming out of one of the POU rooms who was pushing a stroller with child who didn't look much older than Liam…and with a full head of hair…that Liam didn't lose all his hair. The dad eagerly looked at Liam to see what cancer looks like which was a really weird feeling. We're no longer the new ones on the floor. We actually have experience to share with people which is so hard to believe.



- We take great comfort seeing our "classmates" when we're at the hospital. It's indescribably reassuring. We greet each other as old friends and there is nothing in the world that Larry and I wouldn't do for the families we've met along the journey. My fervent hope is that they will continue to be a part of our lives to celebrate milestones of birthdays, graduations, and weddings as they happen. I hope that cancer isn't something that throws us together but then leaves as the cancer cells retreat.

- Faith is what gets us through the days and nights, but receiving signs is always nice. Our signs continue to be left for us by cartoon characters. Caillou's friend lives on the 17th floor of a high rise building. Caillou's house number is 17. Liam now knows the number 17 from seeing it on Caillou's house and the elevator of our "city home." Guess who else lives on the 17th floor? Liam's new close friend…Curious George. At some point this week after watching the movie a few dozen times, I caught that George and the man with the yellow hat live on the 17th floor. To make absolutely sure what I was hearing was true, I scanned the DVD back and watched it again just to make sure. This is one of those things you just don't question but go with.

Wednesday May 16

Woefully Brief Update (that doesn’t include anything about his birthday weekend but this is news we have to share): Liam pushed his dump truck tonight for the first time since his surgery. He’s coming back. One thing helping to get him out of his funk is his new “home.” He has his own locker at the fire station he now claims as “his” fire station. The locker, presented to him as a birthday surprise, is outfitted with a personalized name badge, official fire jacket with the fire station patches sewn on, pants with suspenders, and helmet complete with the obligatory block of wood he sees tucked into other firefighters’ helmets. More on Liam’s fire fighters, whom he calls “his fire fighter guys,” later. Larry and I are both feeling a bit like the witch in Hansel & Gretel who constantly offers food. Liam actually had an interest in food today, which makes us very happy. We’re still looking for the magic food combination that will interest him and feel like we’re exhausting our options. Cheese puffs are on the out but peanut butter and jelly sandwiches from the hospital (the ones mommy and daddy make are still out), are back in. He’s still obsessed with chocolate milk that’s heated…cold chocolate milk is forbidden…and he’s become very finicky about which cup his drink is in. (The unwritten, unspoken rules Liam has established can be maddening. But again, if it’s his only way to exercise a tiny bit of control on his life, we can deal with putting the same drink in three different cups until it’s in the “right” one.) Now, if only there was a way to help him gain 10 pounds before the next round of chemo…we’d be ecstatic. He also for the first time wanted to do his normal bed time routine, which was another very positive sign for us. As he was going to bed he talked about all the things he wanted to do when the sun came up. It’s good to have him talking about sun rises again.

Early Saturday, May 12th

As we finished round 4 of chemo, I felt like I was spending time with an old friend. I keep hearing the song, “Back in the Saddle Again,” on a constant loop in my head. I now know what to expect. I know that for four nights the alarm needs to be set every 1 ½ hours to change his diaper. I know the way Liam tolerates being awakened to be changed and how to do it as stealth-like as possible with minimal sleep interruption. I know to have all diaper changing needs including gloves and butt paste, the special concoction that is formulated at the hospital to ward off painful diaper rash associated with chemo, within arm’s reach. I know that he’s going to want his feet rubbed in order to go back to sleep after I interrupt his rest. I know to have extra PJs close by because invariably they’ll need to be changed at least once but more likely twice during the night as quickly as possible. I know to have two or three plastic-lined sheets layered on top of each other on his bed so that if one gets wet, I can simply pull it back and have another in place. I know to have a flashlight close by to inspect Liam’s butt for signs of diaper rash without having to turn on the light, or, as Liam calls it, “the sun.” I know to have a container right next to the bed to collect the chemo-laden diapers. I have the routine down. What I don’t know how to do is deal with his withdrawal. He’s barely talking and seems like a shell of his former self. He doesn’t want to walk and when he does, insists on leaning forward with his head resting against my hands as he shuffles along and Larry pushes the IV pole or carries the backpack with the pump. He’s not sad nor is he happy. He’s very indifferent towards everything. He’s tired. Very tired. But every once in a while, he shows a glimpse of his true personality and smiles his adorable smile that makes his eyes twinkle or gives me the hush sound as he hears the sounds of sirens outside. Those glimpses are all I need to keep gently nudging him along, but the glimpses are too infrequent. We’ve also noticed a very discernible change in his attitude when someone asks us how he’s doing or wants to talk about his medical condition in front of him. He withdraws even more so we’ve instituted a policy to not discuss how he’s doing in front of him. While logically we know his body has been through a lot, it’s difficult to not have our son’s sweet personality full of discovery and wonderment fully present and accounted for. And while he was deemed recovered enough from surgery to withstand another round of chemo, it seems that he hasn’t shaken the feelings of insecurity associated with waking up in the ICU of NY Presbyterian with a face full of strong “chemo tape” (tape so strong it reminds me of electrical tape), a tube down his throat breathing for him and another down his nose. He doesn’t talk about the time in ICU. He hasn’t said a word about it, but I know he remembers. If he remembers his favorite cleaning person Gabriel, after not seeing him for more than a month, he certainly remembers his short but painful stay in ICU. One of the most amazing things about Liam is his innocent, open, trusting disposition. Now he’s guarded before deciding if he’s going to smile. When we ran into Zachary and his Mom leaving the hospital on Friday as we were arriving, Liam accepted the birthday present they thoughtfully picked out for him but he simply wouldn’t smile. As soon as they were out of our sight, he smiled at me with excitement for receiving a present. When someone comes to visit, he acts indifferent until they leave and then he wants to know where they went and when they’re coming back. He acts wounded, but we can’t tell if we’re reading into the situation and if he truly is wounded or if he’s just recovering from the cumulative effect of four rounds of chemotherapy, multiple in patient stays, and a long, extensive surgery in a 10 week period. I suppose it’s a little of both. I’m hoping he’ll very quickly erase the memories that are preventing him from showing those wonderful personality traits and come back to us. I know he will but every hour that I don’t have him here, a little piece of my heart breaks for him.

It’s easy to focus on the euphoria of a successful surgery, but the reality is that he is very skinny from not having eaten in a week (his appetite was just beginning to recover when the fourth round of chemo began); his skin is literally hanging off in places I didn’t know skin could hang off of a body; sitting is very uncomfortable because he doesn’t have enough fat to cushion him in a sitting position; and I can literally feel every bone in his body. I find myself holding him very protectively and cradling his head against my shoulder or chest like he’s a newborn. I want him to feel comfort when he’s in my arms and being in either my arms or Larry’s is the only place he wants to be. Someone told me it takes an adult a week to recover for every hour they are under general anesthesia. If Liam takes half the time to recover, that puts him at five weeks to fully recover from surgery and have him running around, pushing his dump truck and chasing Ella. Now, throw in another round of chemo which, apparently, makes you feel like you’re suffering from a really bad case of the flu, and that recovery time may be more like six or eight weeks. I think there was a part of me that was hoping he would awake from surgery and feel pangs of hunger now that the tumor that was pushing against his stomach was gone. I was hoping he’d be like someone whose sight is regained during surgery and there would be an immediate improvement. At this point, what’s giving me comfort is knowing that the primary source where the cancer cells were dividing and multiplying is gone and the surgical pathology report that examined the 14 separate specimens taken was, in Dr. Kushner’s words, “very good.” Someone else at the hospital told me something that puts things into perspective…as badly as Liam feels, his cancer feels even worse. We’re excising a demon in his body that doesn’t easily let go. This demon doesn’t know what it’s up against. It has to deal with all of us who simply will not back down. On Friday, one of the nurse practioners on the neuroblastoma team told me she couldn’t believe how extensive the network of people who are fighting this battle along with us and supporting us is. Every child who is fighting a battle like this needs the same support. This is not one that anyone would want to do alone. And we’re very, very, very fortunate to have so many people keeping us in their thoughts and prayers. Maybe a trip to Disney World is in order when this initial phase of treatment is finished…some fantasy and fairy dust could be just the thing Liam needs.

-Gretchen

Friday May 11th 12:30 pm

It has been a few days since our last post because the last few days have been a blur. Tuesday afternoon Liam was doing so well that he was removed from the POU unit and sent back to a regular inpatient room meaning we lost our large comfortable private room, but it was good news since it showed how well Liam was recovering from his marathon surgery. You might wonder how well Liam was doing? Well he was doing well enough to start his 4th round of chemo on Wednesday and to be discharged later in the day. I was really bothered by the whole thing since it was just 5 days after a 10 hour surgery and I just couldn’t imagine how he could tolerate anything more. Today we are 3 days into a 4 day cycle and will complete the treatment sometime Saturday afternoon. Liam was discharged Wednesday evening at around 11:00 pm and has been receiving the balance of the treatment as an outpatient. He has not required any pain medication since Thursday morning and this bewilders me. How could such a small little guy with an incision measuring approximately 7 inches long across his right side not be in any pain? I know I would still be popping percosets every other hour. His spirits are low and this is normal after everything he has gone through. We have tried every trick we know to wrestle smiles from him but they are pretty hard to come by. Dr. Bovine the clown at MSKCC from the Big Apple Circus who is a professional smile wrangler also failed to get Liam to do little more than smirk and only for a second. It makes us feel as if we have really hurt him and it is as if he is just so mad about everything that he is experiencing that he has nothing to say to us or those around him. Every once in awhile he lets his guard down and says something very Liam like but seconds later as if realizing he slipped he clams up again. We have worried for over a week now about Liam’s Birthday this coming Sunday (Mothers Day). We wondered if we would be in the hospital. We worried about the timing of the chemo treatment and what kind of Birthday he would have if he was hooked up to a chemo pump. I am relieved to say that we will have completed the chemo round just 1 day prior to the big day and we have every intention of going to our home in NJ to spend the day any way Liam chooses. He may just opt to spend most of the day being held or carried around the yard but it will be outside of the hospital and for this we are most thankful. Liam will turn 3 years old this Sunday.

It’s Your Birthday - Liam Turns 3! Friday May 11th 3:00 pm

Many have expressed an interest in sending Liam birthday gifts and have asked where they should send them. We suggest that any gifts be shipped to our New Jersey address. Please no more stuffed animals. We already have enough to start a Zoo. Liam loves anything that is interactive or that he can learn something from. He is extremely interested in things that move, make noise, can be used outside, require thoughtful input, are activity based, and are more complex than the recommended 2-3 year old toys. Remember he has been in the technology laden world of medicine and has moved beyond where most kids his age stand.

Send to:

Liam Witt

31 Hoffmans Crossing rd.

Califon, NJ 07830

Tuesday May 8th Update

Right now Liam is in the POU unit which is Sloan’s equivalent of an ICU. It’s a small, 3-bed unit that we love to be in because you have your own room, the rooms are HUGE, and Reece who is our beloved tough-as-nails-but-oh-so-cool nurse here. But POU isn’t a place you want to be because it indicates how sick your child is. We’re here for a few more hours until a room on the main floor opens up for Liam. To put how well Liam is doing into perspective…right now a patient is being transferred from here to Cornell’s ICU, where Liam was this weekend. This poor patient is not doing well, not well at all. You can hear it in the voices of people as they’re talking. Everyone sounds stressed over the situation. And here, two beds away, lies our little prince…snuggled with his favorite pillow and stuffed animals…completely oblivious about what’s going on. Life is very fragile and there are certainly no guarantees…but it’s a huge, huge, huge reminder when the fragility of life is playing out within arm’s reach. In the time it took to type this note, the patient is already on his way to Cornell. We will certainly pray for his recovery.

-Gretchen

Monday May 7th

It’s hard to describe what Friday was like. If I had to choose one word, it would probably be anguishing. To know that the life and future of your precious child is in the hands of someone else, is one that requires utmost faith in order to get through. When I heard Dr. LaQuaglia’s voice saying everything was “just peachy,” I broke down and cried heavy, stress-relieving sobs. As a mother, I will forever be grateful to him for giving me what I needed to stay centered throughout the long surgery. After we were told that Liam’s operation was over, nearly 10 hours after it began, one of the surgical nurses who was in the OR with Liam, came to see us. She went out of her way to find us to tell us that our brave son did great; that Dr. LaQuaglia relentlessly went after every fragmented piece of tumor that resembles poison ivy in the way it wraps around veins, vessels, and organs; and that everyone in the operating room was moved by Liam’s story after reading about and seeing pictures of him on his blog which they were looking at in the operating room. She didn’t have to come find us. She didn’t have to reach out to us. And once again I was left with a feeling of humility that someone who doesn’t even know us cares enough to join the fight.



How Dr. LaQuaglia can stay so focused on such small details for such a long period of time in an incredibly high pressure situation is beyond comprehension, but has my complete admiration. We waited for him in the small consultation room for what felt like another 10 hours. We tried to come up with small talk but I couldn’t stop pacing. All I could think about was what news would be delivered once that door finally opened. Would it be the same as when I was at St. Barnabas and the oncologist and surgeon delivered the news that Liam had stage IV neuroblastoma? When it finally opened I felt numb with anticipation. Would we find out a kidney was lost? Would we be told that he tried but just couldn’t get all the tumor and a second surgery would be required? Would we be told something worse? He looked tired but relieved and told us what we wanted to hear. The nasty, invasive tumor was gone and Liam had two kidneys. We thanked him and while he graciously accepted our gratitude for saving our son’s life, he also told us to thank someone else and pointed up. As he has told us, when children are in his operating room…they are his children. After he delivered his report on how Liam did, he officially handed our son back to us…with a new lease on life. We dug him out of the cravass, and now have him on a more even playing field. Liam still has cancer, there are still cancer cells preying on his body, but the mass of cancer cells are gone. The next step is to go after the stragglers that escaped and try to retrain his body to identify and fight off neuroblastoma cells.



The rest of the weekend is a blur with one central focus…getting Liam off the ventilator and mass of wires monitoring every aspect of his body removed. One of my greatest fears about surgery, which I haven’t even shared with my husband, is that Liam wouldn’t be Liam post surgery. That in addition to taking the tumor, it would take away his personality. With the first words of “All Done” and “Paci” were spoken after the ventilator tube down his throat and NG tube down his nose were taken out, those fears vanished. And true to Liam form, he was saying “No Thank You” and “Yes Please” to the doctors and nurses who were caring for him.



It’s now Sunday, and to everyone’s surprise, we’re back at Sloan-Kettering. Liam was excited to take an ambulance ride, even if it was only one block, and liked hearing the sirens heralding his return to Sloan. As we walked through the lobby, Liam recognized where he was and his anxiety level seemed to decrease being back on familiar turf. Today it’s one week until Mother’s Day. It’s also one week until Liam’s 3rd birthday. I can’t think of a better Mother’s Day present than to celebrate my son’s birthday without the tumor present as an unwanted guest. We still have a very long way to go in treating Liam, and we are still in the “intense” phase, but the lynchpin to getting him better was to get the tumor removed. Thank you everyone for getting us this far. To give this process a sports analogy, I think we’re just about at the first half of the game in this initial battle. We’ve gone through three rounds of high-dose chemo, two bone marrow tests, and major surgery. The next phase, which begins as early as this week, includes at least two more rounds of chemo, radiation, and 3F8 treatments. We’re making it…one precious day at a time. And I do mean “we” are making it because it takes all of us, even those people I don’t know but who are cheering on Liam, to win.

-Gretchen

Sunday May 6th 10:00 P.M.

It was determined today that Liam no longer needed to be in Cornell’s ICU since his vital signs were strong and he was breathing fine on his own. A bed was open in the POU unit back at Memorial so by late afternoon we were back in the same room Liam recovered in over 3 months after his biopsy. Liam did not sleep well last night in the noisy ICU. It was almost as if he felt relaxed to be back in the hospital he is now familiar with and could finally sleep. He’s taking full advantage of the private rooms in the POU unit and sleeping. Liam also took a very important first walk just an hour or so ago and will be required to take more of these uncomfortable journeys several times each day to help keep his lungs clear and maintain his strength. Many are shocked to see him back from ICU so quickly but for those of us who know Liam best, it’s really not that much of a surprise. He is simply determined to be pushing his dump truck and chasing little Ella around as soon as possible…or as Liam would say “Right now Daddy.” The concept of seeing Liam running around tumor-free is one that I can’t wait to realize.

Tomorrow I will try to answer the question about what the removal of the tumor means in Liam’s case. It might be easy to assume that since Liam is tumor free, he has no more cancer. Unfortunately ridding a child diagnosed with Neuroblastoma is not that simple. Don’t get me wrong Liam is doing great so far and we are very encourages as are his doctors and nurses but we have a ways to go and we need all of you to stay by our side and continue to give us strength.

-Larry

Saturday May 5th 10:00 P.M.

Today is an exciting day for us as we know the tumor that was spreading the cancer has been removed from our precious son. Now we watch over Liam and watch his every breath and movement. He has spent the day bouncing in and out of consciousness as the Fentanyl, a drug used to keep him sedated yesterday and throughout the night, slowly wears off. Liam’s vitals have all been strong and as soon as he can stay awake for an extended period of time he will be able to be removed from the ventilator that has been helping him breathe. Liam has had a fever most of the day but this is considered normal.

He is receiving pain medication constantly and we can push a button to provide more whenever we feel he is uncomfortable. Liam has an epidural that helps block the pain in his abdominal area where his incision is located. Now the doctor is in our room and evaluating Liam at this very moment to see if he is ready to breathe on his own. He is asking Liam to squeeze his hand and he does so very firmly. He asks him to open his eyes and he does so looking up at the doctor with his big brown eyes even though his swollen eye lids are very heavy. I ask Liam to show the doctor his red toe (the one illuminated by the pulse monitor) and he lifts his foot off of the bed and into the air so that it is clear for all to see. Dr. Sovard then asks Liam if he wants the tubes to be taken out and he quickly nods his head an emphatic YES.

The decision to take Liam off of the ventilator was just made and we are anxious to see how he breathes on his own. It is sort of a scary moment even though he has been taking most of his breaths with little or no support most of the afternoon. To get the tube out the tape that is holding it to his face first needs to be removed. Liam has very sensitive skin and it does not react well to adhesive. He still has marks from adhesive related wounds from his biopsy over 2 months ago. The excessive use of tape by the EMT’s that transferred Liam irritates Dr. Sovard as he works to remove it with adhesive remover so as to minimize the pain to Liam. One side is quite raw from a previous removal that was not done so gently. Liam is asked to take a deep breath and as he does so Dr. Sovard exercises a move to slide the ventilator tube out of Liam’s throat and in another he removes the NG tube that was used to deliver medicines directly to Liam’s stomach. He is instantly given Oxygen as we works to cough up some of the flem in his throat. He is breathing well as we calm him back down. Gretchen and I are each holding a hand and a foot as Liam utters something to us. He then coughs some more to clear his throat and tries again to tell us what he wants….Passy. There is no mistaking what he just asked for…he wants his pacifier as we anticipated he would and it is given to him as requested. We look down on our amazing son who has cleared yet another hurdle on his path to recovery. He has done so with bravery, determination, and strength that we are truly in awe of. I have never really had a “hero” but today I have determined that Liam is just that….my hero.

Liam is still in ICU and likely will be for a few more days. Please continue to keep Liam in your thoughts and prayers because it is working.

-Larry

Friday May 4th 10.00 P.M.

Surgery Update

I just spoke with Larry. After 10 hours of surgery, the doctors said that the procedure was a success, the tumor was removed. Liam did great throughout the whole process. He will be in ICU for the next several days and sedated for the next 48 hours. Larry and Gretchen would like to thank everyone for their prayers, support and well wishes and they will post more news as soon as they get a chance.

Conor

Friday May 4th 4:45 P.M.

We heard directly from the Dr. Laquaglia at 1:30 and in his own words "everything is going peachy". It is now 4:06 and we are 6 hours into Liams surgery and just received another update from the operating room liason to tell us everything is going well and Liam is handling the procedure well. We are surrounded by friends who have managed to keep us distracted as best they can with their warmth and light conversation.

Friday May 4th 2007

An Angel Watches Over Him

Liam’s surgery began around 10:05 this morning and the next chapter of his recovery story is being written today. We explained to him this morning that today was the day the good doctors were going to fix his blood in the big room with bright lights.. (Liam thinks his blood is broken). When the doctors walked into the pre-op room, Liam asked them if they were the ones who were going to fix his blood. We were in awe of Liam’s display of bravery and sweetness at a time when we know he is well aware that something is different about this day. His face shows concern showed in his face and his slightly furrowed brow. The magic stone given to him by Bob and Lee Woodruff that saw Bob through his recovery, his favorite elephant pillow, and two of his favorite puppies, accompanied Liam to the operating room and will be at his side. Liam was given a sedative and within seconds he began to smile from ear to ear. Dr. LaQuaglia put out his arms and with no reservations Liam climbed into him. Gretchen and I kissed his soft warm head and watched as our gifted surgeon carried our precious son through the big double doors leading to the OR. Dr. Laquaglia stated that as long as Liam is in his OR he views him as his own son.

I wanted to share something else that hit me at some point during my sleepless night which helped reassure me that Liam and his surgeon are not alone. A year or so ago my Grandmother passed away at the age of 86. She was one of the most important people in my life as she was to anyone she cared for. She was always the one taking care of the people around her and was often referred to affectionately as an angel. Grandma Rustenholtz was very religious and very involved in her church. Her pastor used the word Angel when he referred to her and he loved her like a mother. My Grandma loved butterflies for their beauty and delicate nature and we often gave her gifts related to them. The day of her funeral I stepped out of the room and found a quiet place with a window to look out and contemplate my loss. A beautiful Monarch fluttered up to the window and hovered there for what seemed like several minutes. It danced gently on the warm summer breeze and I watched in awe as it floated upward and disappeared from my sight. I have never been one to believe in symbolism but when I see a butterfly, I instantly think of my Grandma …..my Angel. My Grandmother’s baby picture hung in Liam’s room when he was a baby and today hangs in Ella’s. I know she’s looking over them as they sleep.

Earlier this week Liam discovered the strangest toys in the playroom. It is an elephant with a long plastic trunk. The elephant blows little fabric butterflies into the air and the objective is to catch them with little butterfly nets. Dr. LaQuaglia came to visit Liam in our room the other day and we just happened to be playing with the elephant and the butterflies. Liam handed him a butterfly net and said “catch them” as he jumped up and down with excitement. I believe today that the butterfly Angel is watching over both her Great Grandson and the surgeon entrusted to help make him better.

Thursday May 3rd

Surgery Update

We have been told that unless one of the cultures shows some sort of infection late tonight we will be on for surgery Friday morning at 9:00 am. The theory is that the fevers have been caused by excessive white blood cell counts due to the triple shots of the drug used to raise his white counts for the very successful stem cell harvesting last week. As the white blood cells die off in such large quantities the side effect is most likely the fever. We will post an update late today or early tomorrow morning if anything changes but at this point it is a go. I will attempt to post updates throughout the day tomorrow as they are given to us from the surgical team. We truly appreciate all of your thoughts and prayers as they will provide us the strength we will all need throughout the day tomorrow and the days following while Liam recovers.

Wednesday May 2nd - Evening

We’re back on the inside. It’s very strange for me this time. I recognize where I am. It doesn’t look strange and frightening any more. I know the routine. I know what to ask. I know where to find things. I’m comfortable with the minute-by-minute life of the inpatient world and the energy it takes to be both caregiver and entertainer. Liam also recognizes where he is. He’s as equally comfortable with the routine and knows what to expect. It reminds me of the Sesame Street song, “Who are the people in your neighborhood.” This is one of his neighborhoods. He knows the people who are in it, the routine, where the really neat things are like the smoke detectors, strobe lights that would indicate a fire, and water fountains. He knows who is new and who isn’t. He’s happy to see the people he knows and happily greets them with a huge smile. He notices if something has changed - the dryers in the family laundry room now have signs on the front of them and a different venting system. He knows where the playroom is and how to get there from anywhere on the floor. He knows there’s a shortcut through the Family Pantry to the playroom. And he knows we can’t go home because he has a temperature. He keeps saying with frustration in his voice, “Temperature! Go Away!” He’s not happy, but he’s not sad. He’s accepting. He was fascinated with the x-ray machine that we had to visit in the morning. He helped clean the cheese puff crumbs off his face, normally a dreaded task, in preparation for getting his picture taken (what I call x-rays). He was happy to ride around in his red wagon and he was especially happy to play with glitter “sparkles” all day. For some strange reason I can still hear the Britney Spears song that was playing as we entered the X-ray room repeating itself in my head. Now that I think about it…maybe it’s not so strange I can’t get it out of my head since the song was “I did it again.” Here I am, doing it all over again…the hospital routine…but I feel much better at it than I did the first time.

Some Thoughts to Share:
Since Liam’s diagnosis, we’ve slept together every night. He panics when I’m not near him at night. And invariably several times throughout the night when we’re sleeping in the hospital, he wakes up and in a sleep-laden voice says, “Mommy – Rub Feet.” Last night he added a new twist, “Mommy – Rub Feet and Hold Hand.” I stretched as far as I could to do as he requested. He fell asleep with me hands massaging his tiny feet. His feet still amaze me like the first day I saw them and I couldn’t think of a greater pleasure then to rub them.

Some days I wake up and forget for a few seconds that I’m living in the world of cancer. And then I remember. When I’m sleeping in the hospital, I never wake up forgetting where I am.

Crying is a universal sound, no matter where a child is from. Our roommates are a little girl who looks to be about 7 and her father. Their accents make me think they’re from Russia. I don’t recognize the brand of shoe the father is wearing which I can see under the fabric screen dividing the space in the room. They’d definitely not from here. The sounds of her cries are the same as every other child on the floor. I wonder if they’re here for 3F8 treatments which aren’t available anywhere else.

Another little boy who is not much older than Liam and also a stage IV neuroblastoma case is also inpatient. He was diagnosed a few weeks after Liam. He’s only one chemo treatment behind Liam. Mom is very pregnant – due in a few weeks. I really like her and under normal circumstances could see us being friends. It was nice to see her here and we greeted each other like old college friends, even though we barely know each other. We’re permanently bonded together and can look at each other and know how the other is doing.

Liam saw two women knitting in the family pantry. He looked at them and asked me what they were doing. I told him and then he asked them what they were making. When they held up their work, Liam looked at them and said in his sweet little voice, “Ohhh – Mommy – Look! Pretty!” The women laughed, Liam smiled, and for a moment all was well. But that’s what life is like when you have a child with cancer…picking out the good moments and savoring them.

Two patients who were here before on the floor are no longer here. They didn’t win their battles and both passed away within days of each other late last week. Their rooms were next to each other. Both of them seemed very, very sick but I never knew what kind of cancer they had, their condition and certainly never would ask. How sick someone is is irrelevant when you’re on this floor. Whenever Liam would see either of them outside their rooms, he would stop and say hi or wave from his wagon. He didn’t see their cancer….he just saw two people with smiles. He even serenaded them with “Twinkle Twinkle Little Star” one night. He told both of the boys that he loved them. One of the boys gave Liam two Pez dispensers during our initial stay. I will keep those Pez dispensers in a safe place for Liam until the day years from now when he’s old enough to want to know about all the people who helped make him well. I’ll tell him about the boys from “The Hot Spot”, the place they named the corner of the floor where their rooms were located and marked with a sign, who were his friends. The other boy would give Liam lollipops every time he saw him and Liam would eagerly look for him to be sitting outside his room in hopes of a fresh lollipop. I can’t walk by their rooms. It hurts too much to acknowledge they’re not there and if I don’t see their rooms, I can pretend they’re still here.

One thing that helped boost my spirits last weekend was coming home to a collection of cards, letters and notes from friends and strangers who have heard about our battle and decided to join the fight. I can’t tell you how much those communications mean to me…every card feels like a hug and I read and reread each card over and over again. All weekend when I was feeling like a hollow shell with not much left, I’d go to the place the cards were carefully arranged and read them all again. I can’t believe we’re still receiving cards. I truly thought that people would forget about our battle by now and have grown weary of sending cards to us. Now that I know how helpful it is to have a constant stream of communication from the outside world when you’re in the midst of fighting a war, I wish I knew a soldier in Iraq I could send cards to. What occurs to me is that by receiving so much goodness from others, I’m learning how to be a better person myself.

Liam’s birthday is coming up. He’ll be three on May 13th. Every year on his birthday I’m going to show him all the cards, letters, e-mails, t-shirts, special packages, mementos, blood counts, test results, pictures…etc to try to impress upon him the power of good and the huge support network of people who surrounded him to make him well. He needs to know that it took a huge city of people to make him well. He needs to carry that spirit with him throughout his life. I feel like I know my son so well and yet he isn’t even three. Liam keeps asking where his birthday is and to bring it to him. I wonder where we’ll be this May 13th. I wonder what will be happening in our lives that day.

He and Lee share the same birthday, something that doesn’t surprise me knowing how many other ways my life and Lee’s intertwine. Being able to ask her if she had the same feelings about certain events, scary thoughts, scary odds, etc while caring for Bob is so comforting. Lee and I have a permanent bond that is unbreakable – we both know what it’s like to have your life changed in an instant and be in a free-fall state while still needing to keep it together for your children. Lee always knows exactly what to say, what not to say, when to say something, and when not to.

Gabriel wasn’t here today which greatly disappointed Liam. He spent the day looking for him and the floor polisher. When Liam and I were in the Urgent Care Center last week, we ran into Gabriel. We hadn’t seen him in quite a while, at least five weeks, but Liam knew exactly who he was and happily called his name when he saw him. After a visit which included Liam asking him where the floor polisher was, Gabriel showed me something he has been keeping in his wallet since Liam’s initial visit….several lockets of Liam’s hair. Liam gave Gabriel some of his “magic hair” when he hair was falling out post chemo round 1. As he carefully took the locks of Liam’s blond hair out of his wallet that were carefully wrapped in a piece of paper, I smiled in amazement that my son who isn’t even three could make such an impact on someone.

Jessie and her parents came to see us today. Liam was the first one to see Jessie’s Dad and immediately yelled, “Jessie’s Daddy!” when he saw him. He was so happy to see the three of them. They were light rays of sunshine on what was a troubling day with the surgery postponed. Seeing them is like seeing family and Jessie and her family will always be a part of our family from now on. One thing that continues to amaze me about Liam is his memory. He hasn’t seen Jessie’s brother since early March but today he asked where Robert is. They came bearing gifts for Liam…early birthday presents. After they left, Liam opened the present. He stood over the gift bag, leaned over and pulled out a gift. “OH WOW! A raincoat! With Frogs!” The irony is the one thing I need for Liam is a raincoat. Several days we’ve been caught in the rain without a raincoat on the way to or from the hospital. How did they know he needed one? I couldn’t tell who was more excited – me or Liam. And then he pulled out a hangar with a frog on it and said, “Mommy – A Hangar! Look! A Hangar!” He was pretty darn impressed with the hangar….and insisted I hang up the raincoat on a cabinet door handle next to his bed so it could be an arm’s reach away. Again, I find myself so humbled by the outpouring of love and support for our little fighter.

It was 5 p.m. before I realized I hadn’t eaten today. Time means nothing when we’re inpatient and food, as Lee said, is just fuel. I’m fortunate that the past three weeks there has been a lot of delicious high-test fuel brought to us. I feel like I’m all tanked up and ready for a long hospital stay associated with Liam’s surgery.

Gretchen

Wednesday May 2nd Afternoon

Orange Sky

I came across this song close to a year ago and was immediately touched by it. Strangely it became one of my favorite songs and I shared it with close friends. Orange Sky was even my annual submission to a friends holiday music compilation CD that he sends out to close friends and colleagues as a gift. Needless to say today I have an even stronger emotional attachment to this song and find it to be one that I will always cherish. Today it is as if Liam wrote this song to Ella and the picture above was what made me think of the association and the overwhelming desire to share it with all of you. I think it will move many of you in a similar way once you have actually heard it. Thank you Alexi.

Well I had a dream
I stood beneath an orange sky
Yes I had a dream
I stood beneath an orange sky
With my sister standing by
With my sister standing by
I said Sister, here is what I know now
Here is what I know now
Goes like this..
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, in your love, in your love
But sister you know I'm so weary
And you know sister
My hearts been broken
Sometimes, sometimes
My mind is too strong to carry on
Too strong to carry on
When I am alone
When I've thrown off the weight of this crazy stone
When I've lost all care for the things I own
That's when I miss you, that's when I miss you, that's when I miss you
You who are my home
You who are my home
And here is what I know now
Here is what I know now
Goes like this..
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, my salvation lies
In your love, in your love, in your love

Wednesday May 2nd Update

SURGERY UPDATE

The roller coaster I have mentioned in the past just took another turn. Due to a temperature that popped up again yesterday morning while at the hospital for pre-surgery screening and in the evening just after we returned home and got settled in, Liam’s surgery has been postponed to what looks to be Friday at the earliest. Liam was admitted to MSKCC again last night and will likely remain inpatient until surgery. Tests are being done to understand what is causing the fevers. The fever first appeared Sunday night and caused us to come back to the city around midnight for a visit to the urgent care center at MSKCC for antibiotics and blood cultures to see if he had a central line infection. It is the most common infection for kids with a central line but the cultures came back last night as negative so it does not appear to be the cause. Now we are trying to pinpoint the cause of the temperatures through urine and blood work as well as a chest x-ray. It could be a virus and this might explain why blood cultures so far have been negative since they cannot detect a virus only bacteria. I know that many of you are thinking of us today so I wanted to let you know that as of right now we are in a holding pattern and will be until the fever source has been identified. We were as mentally prepared as possible for the surgery today and this recent turn of events is just further proof of just how unpredictable our world is these days. The good news that Liam never disappoints and tends to do something to take our mind off of the daily uncertainty by proclaiming some new discovery or surprising us with his intellect and sense of humor. I just received this note via Blackberry from Gretchen while writing the above: HE JUST PEE PEED IN A CUP! The exact amount we needed. Lindsey (his nurse whom we adore) and I got teary eyed watching him pee.

A Note From Gina

I am sitting here writing through the tears in my eyes. For the past couple of months and especially of late, I have been able to get just a small sense of what Gretchen and Larry and every parent of a sick, helpless child feel everyday...and it really sucks.

I have had the privilege to spend some real quality time with Liam. Somehow, for some reason, we bonded over and episode of Calliou or Curious George...who knows...and it doesn't really matter. And now, I truly feel his sweetness and his suffering. I wonder why I didn't try to spend more time with this special family and this very special little boy before all this happened. It can make me sad to think that it took an illness to strengthen a friendship, but instead I will be happy for the bond.

Today was especially hard on my friends—and myself as I realize now. It started in the day hospital early this morning. Gretchen and Larry were to meet with the surgeons and asked me to play with Liam so he wouldn't have to hear the conversation. The day started with a total surprise, when asked who he wanted to come with him to get his blood drawn, Liam answered Mommy and Aunt Gina. Then, when the consultation with the surgeons started a bit later, a drowsy Liam sat on my lap while rousing himself to his environment. A sippie cup full of magic juice later, it was on to the playroom. Several things really touched me about this day, and while they may seem small and insignificant to you, they were huge for myself and for Liam—or perhaps for our relationship. If anyone has spent anytime with Liam of late, you'd know that he is never more than a tubie length away from his mommy...but he will stay with me for small periods of time (I chalk this up to the fact that I never really grew up and relate to any level child because I pretty much am still one at heart). In the playroom, he sat on my lap while playing a rousing game of Bingo. To give you an idea of the scene, picture a bunch of 3 to 5 year olds around a table, most of which cannot read the letters at the top of the board. The highlight of the game is spinning the ball cage round and round until the 5 numbered balls drop methodically down the ramp. Liam was so excited he kept flipping his bingo board upside down and giggling. It was then I realized we had a leaky diaper situation. Now, nobody changes Liam's diaper except Mommy and Daddy (and maybe grandmas). I had to explain that they were talking to the doctor and couldn't do it, but that I could. It's as if he senses what is going on, but to my astonishment, he agreed to let me do it...I guess the alternative didn't feel so good....but rather than get upset, he obliged...and let me tell you it was a stinky! I couldn't believe it.
Then after playing a while, one of the nurses, Emily, came to find us. She wanted to give Liam his Tylenol before his blood work (it is liquid and is administered through a syringe-like contraption minus the needle). He kept saying, "No, Mommy do" through the passie that is permanently pursed in his lips. Emily tried to explain why we needed to do it before mommy got there. We both told him how proud Mommy would be if he did take it. We "tasted" it and told him it wasn't the bad one, but the good tasting one. Then finally, through tear-filled eyes, he said, "No, Aunt Gina do it." Again, I was shocked, and touched. As I said before, it's as if he realizes something is up and that everybody is a bit more "touchy." The kid is very perceptive...and no matter what you give him or offer him, his response is a sweet, high-pitched, "thank you" or "no thank you"—even if Mommy just gave him medicine. It kills me really. So, I think he is adapting his behavior for his family, because he knows something is amiss. Crazy really.

Anyway, a little while later I left the hospital (at 68th and York) and walked down to 59th and Lex for the fresh air and to catch the subway there. Only then did I realize, that I had actually driven in to the city and parked my car on 70th street by the hospital. I guess I was a little pre-occupied with thoughts of Le Petit Prince—worrying about the big day on Wednesday.

Sadly though, I just found out that surgery MAY be postponed because Liam ran a temperature late this afternoon and was admitted to the hospital. I can't tell you how upset that made me. I want him to have the surgery already, to have the poisonous tumor removed from his little body and for him to be on the road to victory over the evil that has waged a war on this valiant young soldier. This soldier, though is tough, he is a fighter. And he, along with this whole army he has backing him up, is already paving the way.

Onward!
-Gina Provenzano

Tuesday Evening May 1st

NEW PICTURES ADDED TO GALLERY

I added over 30 pictures to the gallery late last night ok maybe it was actually this morning since there was no way I could sleep. The pictures are mostly of Liam since he had been diagnosed. Gretchen asked that I add a few of Ella due to requests from many to see what an adorable lil’ sister she is. Enjoy

Tuesday Afternoon May 1st

Long day……met with Liam’s surgeon and walked out feeling confident and better than had been expected. Gretchen and I managed to keep it together right up until the very end when we asked him to make our son better. Liam received red blood cells from one of you generous donors along with several medications to prepare him for the surgery. Time today seemed distorted. Seven hours flew by like 15 minutes and it feels as if there is not enough time in the day today. I want time to stand still today so that I can do a million things with Liam. It seems like we should be doing so many other things the day before a very scary surgery and not spending 7 hours of the day in a bed hooked up to a pump. I kissed and rubbed Liam’s head what must have been hundreds of times today. I felt like I had to be touching him in some way the entire day. Gretchen and I are both on edge and are trying our best to keep each other centered. The cab driver on the way back from the hospital was one of NYC’s worst and I almost climbed through the small opening into the front seat to correct his attitude after he rudely told us to roll down the windows instead of using the a/c. Long story short the air was turned on and the windows rolled up after I think he realized the scale was not tipped in his favor.

Tuesday May 1st Update

Goldie House

So it is Friday and for the second week in a row we are heading home to the house that Liam refers to as “Goldies House”

Goldie is our Lab and for some strange reason whenever he wants to go home he says he wants to see Goldie. I personally don’t believe that it is because he likes Goldie more than Madison but more because we are always yelling for Goldie because she doesn’t exactly listen very well, so when Liam thinks of the dogs it is Goldie that first comes to mind. He used to mimic the way I would yell out the door for Goldie except he would yell something that sounded like goadie!. Goldie was one of Liam’s first 10 spoken words. Over the last 2 weeks Liam has really started to catch onto the “country house” and “city house” idea we have been working so diligently to help him understand. I thought I was being really clever and with an act that would make most childhood psychologist proud I purchased two Plan City doll houses to help him become more comfortable with the idea and it would allow him to “play” at one even if we were residing at the other. The “city doll house” was placed in the “country house” and vice versa. Well leave it to a monkey to make it even clearer to a 2 and a half year old. Liam has really been into Curious George or as Liam would say “George the Monkey” and believe it or not George has a city house where he lives with the man with the big yellow hat and they also have a house in the country. One viewing later and Liam has it down pat. Sunday night when it became obvious to him that we were starting to get things packed up he asked “are we going back to our city house?” If you have something to share with your kids hire a monkey or better yet buy the monkeys DVD.



Comfortably Numb

My parents came in from Michigan for a week long stay. The kids got to spend time with them and my mom did most of the cooking over the weekend allowing Gretchen and I to get some work done and to spend more time with Liam. Gretchen’s mom picked them up from the airport and did the grocery shopping so that the house was ready for everyone. Moms were changing diapers, feeding Ella, letting the dogs out and there was less for Gretchen and me to have to worry about. It was nice to have family surrounding us and lightening the load. We had a really nice time and it just felt good. The weather cooperated and it stopped raining late Friday afternoon. I doubt that our parents have any idea how good it felt for I know that it did not show on our faces or in our actions. The truth is that we are numb and focused almost to the point of having tunnel vision. While things are happening around us like conversations, cooking, questions, hurricanes, train wrecks, fires, etc. they go almost undetected. It might appear to those around us as if we are giving them the cold shoulder treatment but it really is not intentional. We are exhausted, scared, and determined. We are giving all of the emotional energy we have to Liam and Ella and whatever may be left is sucked from us by an upcoming test, hospital visit, or in the case of this weekend the surgery to remove Liam’s tumor that is now just 24 hours away. I also doubt anyone knows how close we are to breaking at any given moment. A simple hug is enough to cause us to let down our guard and to let the emotions take us over. We cannot allow this to happen in front of the children or each other so we avoid situations where we may be weakened or overwhelmed. I personally avoid long hugs with anyone. I know I won’t want to let go and the security of a hug with someone I care for makes it seem safe to set the pain and the fear free. The trouble is that I know they will be all consuming and it is better to keep them in the bottle that is my heart and soul. We thank you for standing by us this past weekend and for just being there. You knew to give us space, hugs, food, and simply your warm caring presence. We know now all to well the pain you feel as mothers as your children hurt and you are helpless to make it stop.



Liam’s First Fish

Our neighbors the Traylor’s told us that we could fish on their spring fed pond anytime Liam felt well enough and on Saturday that is exactly what we did. Grandpa Rich and I pulled Liam and Ella in the red flyer wagon down the trail that leads to their house. Barry or “Cowboy” as Liam affectionately calls him set out 2 small children’s fishing poles, fully rigged and waiting for worms. We brought along the worms Liam and Grandpa Rich had found by hunting under leaves and rocks in our garden earlier that morning. It was funny to me how Liam had no fear of the worms at all. He would reach in the plastic butter container that served as our worm holder and pluck them out of the dirt. He would squeal in delight when they squirmed around and tried to get away. The stocked pond rewarded Liam with a nice sunfish on the very first cast and the next two casts were just as productive. He watched in fascination as Grandpa removed the hook and gently dropped them back into the pond. “Where’d it go daddy?” I explained that the fishy went back home. “Bye fishy fishy” said Liam. It was a Norman Rockwell painting in my mind. We returned to the pond on Sunday at Liam’s request but after 2 or 3 casts he was more interested in exploring the nearby brook that is fed by the pond. Liam knelt on the muddy edge of the brook and as I worried about him getting wet he selected various rocks to toss into the babbling waters. He was being a little boy discovering nature and taking in the sounds and sounds of the environment around him. I watched his every move from just inches away and stored them deep in my memory. I doubt there is a subtlety to his movements I did not capture in high definition. He was absolutely beautiful. He was innocent. He was a curious child. He was not the boy with cancer about to have major surgery. It was not the weekend before we were to sit for hours in the waiting room hardly breathing. How could he be in two worlds so completely at odds? How could we? How could anyone?



One day when Gretchen and I were talking I told her that I thought one of the worst things about this disease and treatment was the endless ups and downs. Your child feels good, he feels bad, he looks better and is eating, you start chemo, your counts go down, you get sick, counts come up, feeling good, start chemo again, eats a big lunch, throws it up, counts go down, hospitalized, counts come up, tests, he sleeps well through the night, wake him early give him a shot, get out of the hospital, dressing change, and on the ride goes. Why is this disease that affects such innocence so unknown, why is the story not told for all to hear? Why are there so many small grass roots efforts out there that have not joined together as one to become a more powerful voice? It is children we are talking about…the ones we are all supposed to protect. Something needs to change and I hope Gretchen and I have the determination and energy to shed a brighter light upon this ugly reality that needs the type of support and focus that breast cancer and other adult cancer’s have upon them today. I learned of another family whose son was just diagnosed (reached out to us on our blog), has had his first round of chemo at MSKCC, and I my heart aches for them today. We must somehow make a difference when this is all said and done and I am determined more than ever to do just that.



Surgeon Prep Meeting

I don’t want to sleep in an attempt to prolong the arrival of our pre-surgery meeting. It is 12:15 am and tomorrow and soon we will be told how risky the surgery can be and the word in the halls of MSKCC is that this is a meeting that parents walk out of looking very pale. I know why after getting just a taste of the conversation with our oncologist last Friday as he tried to prepare me for what and how it will be laid out for us. We do not want Liam to sit in the room and hear this conversation and to see the fear in our eyes. A friend will be there to play with Liam while we hear about the risks of his surgery. I wonder how much of the conversation is due to the legal guidelines doctors are forced to operate within…everything is a disclaimer and must be disclosed making it that much harder for those on the receiving end at times like this. Dr. LaQuaglia is a very positive person and one who has made us feel very comfortable in almost every face to face we have had with him but tomorrow I sense will be a bit different. It is the big game we are now leading up to. The three rounds of chemo have just been the cost of entry to fight in this round. I would rather Dr. LaQuaglia be he at home resting and preparing for the battle he is to wage against the enemy on Wednesday May 2nd. Wednesday and the days following are when all of your prayers, good wishes, and positive energy need to be directed our way more than any of the days since we started this fight 2 months ago. Please tell as many people as you can possibly tell to keep our brave Liam and Dr. LaQuaglia in their thoughts on Wednesday and to wish them both a valiant victory.