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Thursday, March 29, 2007

Wednesday Night March 29th Update

Too tired physically and emotionally to write, but lots of amazing stories to tell. Liam will likely be back in the hospital in the next 24 – 72 hours until his blood counts come up. It could be a few days or a few weeks. He's at 0 white blood cells but still going. (You'd never know if you saw him.) I'll leave you with this image – Liam dancing to "Man I feel like a Woman," as it was performed by a group from a local high school. (He was the only child in the audience bold enough to go up to the front to dance.) He quickly moved from dancing to insisting on playing the drums which were infinitely more interesting to him. And another quick snippet…Liam telling me "I'm OK Mommy – stickies are all gone" to avoid a dressing change. Dressings, the protective layer of gauze and bandages covering the central line in his chest, need to be changed every Monday, Wednesday and Friday. He HATES to have his dressings changed and it takes three people to assist the process. I hate dressing changes…maybe even more so than Liam. He'll forget them and eventually will have no memory of this experience. I, on the other hand, will never forget the sights, the smells and certainly not the sounds.

Gretchen

Monday, March 26, 2007

Monday March 26th 1:17 a.m.

I’m so not looking forward to this week and next…and possibly the next few after. We’re now in the weeks where Liam’s white blood cell counts will drop and the battle of staving off the host of viruses, bacteria and germs that are waiting in invade his body begins. In fact, I dread this week..so much so that I can’t eat. And in the wee hours of the morning, I’m alone in my fears. I would be lying if I didn’t say that I’m terrified, but I’m trying to gear myself up for the ensuing battle. Cross-contamination is a huge way of introducing germs to Liam. And one of the best ways to combat is as simple as washing your hands…a lot. I’ve washed mine so much that the skin is flaking and peeling. I can’t put lotion on my hands without wincing in pain – they’re that tender – but dammit, I’m not going to allow my nurturing hands to be a pathway for germs to get to Liam. When I’m out in public, I want to run in fear when I hear someone sneeze. When I get ready to get on an elevator, I want to cry out to everyone…”if anyone is sick or has been near anyone who is sick, please let me know.” I want to put a sign over Liam’s head that says – “I’m fighting cancer. Please keep your germs to yourself.” And I find myself looking at someone with alarm if I hear them sniffling and scanning faces for runny noses.

Sunday March 25th Update

It’s Sunday night. Tomorrow marks four weeks since I took Liam to the pediatrician to get reassurance that my son’s 10 days of excessive sleepiness and lack of appetite was “nothing,” only that wasn’t the news I heard. Instead, I heard that the pediatrician wanted to send Liam for a blood test, chest X-ray and abdominal ultrasound. The pediatrician didn’t tell me to immediately go to the hospital to have the tests done, yet that’s what I did. The minute I left the pediatrician’s office with three prescriptions in hand for three tests that would reveal the silent invader that was trying to take over my son’s body, I just knew that something was wrong. I don’t know why, but I just knew. When I arrived at the hospital, I was told that Liam could get two of the three tests, but the most important one, the ultrasound, would have to be scheduled for another day. The details are too painful for me to relive right now, especially knowing that I’m heading into some very tough weeks, but I managed to get the ultrasound that evening…after a several hour wait..all while trying to entertain Liam and make him comfortable with the situation. After two pregnancies, I’m used to the rhythm of a normal ultrasound. I know when things are going along smoothly, and when they’re not. I knew when the technician was taking too many measurements that there was something wrong. I knew when she wouldn’t answer me with a straight answer that there was something wrong. I knew when she told me she was going to do me a favor and get the radiologist to read the scan immediately instead of making me wait until the next day for a reading, that there was something wrong. I knew. But I had no idea what it would be like to receive the news that I did. And I didn’t know what it would be like to keep receiving bad news after bad news for a week. I don’t like to relive the week of diagnosis. It’s just too painful and thinking about it doesn’t help anyone or anything. I suppose I’m thinking about it now because I’m wondering what other people do in this type of situation. Would they wait and have the tests done by following proper procedure and scheduling appointments during business hours? I feel like I failed my son because I didn’t realize sooner that there was something wrong. If I had taken him to the doctor on Tuesday, the day I first called to ask if he was going through a growth spurt that would cause excessive sleepiness, would it have made a difference? OK – I know it wouldn’t have…but there are times….like right now when I’m vulnerable because I’m thinking about the tough weeks ahead…that I let my mind wander. But then I look at Liam who had the most amazing weekend with lots of love and laughter and RUNNING…yes…RUNNING from one end of his new home to the other….that I have the strength to push those fears aside and get ready to wash my hands. Wait – he’s 2 ½…and I’m using him for strength? That’s what’s amazing about my son…he’s the one who gives me the strength to fight like I’ve never fought before. If only you could spend the day with him, I think you’d be totally amazed at him. The first week Liam was diagnosed, a necklace appeared as a gift. The necklace is made of beads and has three pendants hanging from it. Each pendant has a word engraved. One says, “Imagine.” One says, “Believe.” The third says, “Peace.” When I first saw the necklace I almost threw it away because the words made me sick. But now I can wear the necklace because I truly do feel all of the things those pendants quietly but resolutely declare. And when I’m having a down moment, I grab those pendants and rub them to feel the engraved letters under my fingers.

Friday, March 23, 2007

Friday March 23rd 4:15 PM

UPDATE Friday 4:15 PM
I just received a call from our broker and the apt is ready for us! All we need to do is arrange to get the key. Both brokers worked diligently with the property owner and the building manager to expedite the approval process and managed to do so in 5 days versus the 2 weeks it normally takes and for that we are most grateful. Now comes the hard part, deciding what we need in NYC versus in our home in NJ and getting it there. It is easy actually all we need is Ella! We all miss her so much. The family will now be together in one place.

Friday March 23rd 4:00 PM

We have just been released from the day hospital completing round 2 of chemo. Liam is doing very well and we now have about a week before he becomes Neutropenic and his white blood counts drop. Our nurse the last two days was Emily and she was fantastic. She was compassionate and gentle and she made the short stay in isolation a much better experience than we had imagined it would be. We have had two different nurse Emily’s this week and if they are any indication of the kind f care we can expect from nurses named Emily then all of Liam’s nurses going forward can and should be named Emily. We need to be back to the day hospital Monday morning to see how he is doing and to draw blood for cultures.

Friday March 23rd 11:00 AM

UPDATE Friday 11:00 AM Liam has been nothing but friendly and cordial to almost all who have cared for, inspected, probed, and prodded him but today he made it clear to us both who the one person aside from us that he truly has affection for and this lucky person is Terres. She is the Director of the “Child Life” program and two different times today after seeing her in the distance, Liam has pulled us and his IV pole directly to her with a giant smile on his face. He reaches out for her and she drops whatever she is doing to bend down and take his hands. He literally laid his head in her hands today as if her touch makes everything seem a little less scary.

It broke my heart to see him so desperate for a safe haven aside from us. It is just this kind of bond that we want him to forge with nurses, doctors, and those who will be caring for him. It is part of my motivation to not split his treatment between hospitals regardless of the cost of not being considered in-network at MSKCC. A child needs to feel safe and the majority of the people (not all) we have interacted with know this to be true and go above and beyond to take the child’s feelings and fears into consideration. The few that don’t, stick out like a sore thumb and you wonder how they survive for any period of time in a place that is so committed to children.

Friday March 23rd 10:00 AM

The close of another week and another weeks worth of new experiences, fears, doctors, nurses, sounds, smells, and everything that comes along with this world we have been thrust into. I have not posted for about a week for I have not been able to put into words what I have been feeling. The reality is I think I have been literally numb this past week. All of the emotional stress, fear, and energy it took to get through the first three weeks of Liam’s treatment had taken its toll on my ability to feel. One feeling has not been able to be controlled, buried, or ignored and that feeling is pain and the feeling of being helpless. I hurt for my son and for all he is going through and I cannot make it stop.

Blog entries seem to force me to face this pain and though I am sure it is a good thing I have not had the strength this last week to endure it. While standing in the kitchen last night cleaning up the sink I was overwhelmed with the feeling of pain. When it hits me I feel as if the wind has been just sucked out of my lungs and no matter how deep a breath I try and take, I cannot seem to overcome the feeling of being held underwater against my will. I proceeded to kiss Gretchen goodnight as she lay next to Liam who was sleeping peacefully, as if there was nothing wrong in his world. I leaned down to kiss him on the head. The feeling of the soft down like hairs left on his head brush against my lips and the remaining air in my lungs is converted to tears. I cannot take my lips away from his skin. I beg for the disease to leave his body and come into mine each time I make the magical connection of my lips to his precious little head. I have always had a very high tolerance for pain as is evidenced by the sports I have played but nothing can prepare you for the emotional pain you feel when your child is truly hurting, scared, and in danger.

Gretchen and Liam came to the hospital and I stayed behind to clean up the apt, fold laundry, and to get some things ready to go back to NJ to see Ella this weekend. I headed over about an hour after them. I ran into one of the doormen as I left the building and he approached me and asked if it was my son that was in the hospital. I told him it was and that he was doing well. He told me he used to volunteer but it was just too hard for him being that he had kids. He explained that he had to see a psychiatrist because it affected him so deeply. He told me that if there was anything, ANYTHING, he could do for us not to hesitate in asking him.

I continued down the block and about half way to 2nd ave. the “feeling” began to overwhelm me again…. I was drowning and ever so quickly..sinking like a rock. I tried to look at building, cars, anything to try and take my mind off of the pain that had enveloped me so unexpectedly. Maybe it was seeing parents with their perfectly healthy children heading to day care, or the doorman who somehow knew I was the one with the sick little boy. Whatever it was it came without warning. Tears welled up in my eyes and it took every bit of strength that I had to carry the weight that had just fallen on me and to hold back the tears that wanted to fall like the rain that was gently coming down. I dared not look anyone in the eye for fear that they could see it….the pain, fear, and tears. I pushed on and the feeling subsided as I channeled my strength to push down the pain and fear. I think I now know what it feels like for people who suffer from anxiety in their daily lives.

Thursday, March 22, 2007

Thursday March 22nd Update

2:03 p.m. - The results are back. Liam tested negative for the flu. (He helped the nurse swab his nose this morning, something she said most 2 1/2 year olds are totally opposed to doing.) He's now on the way to the playroom, pushing his IV pole, wearing blue crocks, red and brown striped socks, pajama bottoms with motorcyles, and a black t-shirt. We need to do some laundry.

Whew.

Wednesday Night March 21st Update

It's 11:30 p.m., Wednesday night. We're almost at the halfway point for Chemo Round 2. We just received a call from someone at the hosptial to break the news that the person in the bed next to Liam when he was "in patient" has the flu. This means he was exosed to flu germs. Liam will be swabbed tomorrow to be tested for flu germs in his body, but we won't have the results for five days. So, as a preventative measure, he's going to be treated as if he has the flu and will be in isolation tomorrow when we arrive at the Day Hospital. How am I going to explain why we can't leave the room to Liam, the patient who hates to be in his room and wants nothing more than to be in his little red wagon exploring the Day Hospital? And now we sit and wait and hope and pray he doesn't get the flu.

Gretchen

Tuesday Night, March 20th

I'm sitting in bed next to Liam who is ripping open the cards that have been sent to us with get well wishes. He loves to open cards. He loves to "read" the cards to me and tell me what's on them...especially any that have stars (which immediately make him break out into a round of Twinkle Twinkle Little Star), butterflies (he has a new move - fluttering his fingers like a butterfly), flowers (he tries to smell each and every flower and then insists that I do too) or pictures of children (every time he sees a baby, he thinks it's Ella). Here's what's still so surreal to me, it feels like we're having a "normal" night...Liam ate dinner, we had a nice evening together, and now he's playing with a felt dinosaur game that has totally captured his attention. This is normal, right? But, my son now has half a head of hair that looks like a really bad Donald Trump comb over, there are two tubes snaking out from underneath his shirt that are delivering powerful drugs to him, and then there's the almost rhythmic sound of the two pumps that are next to us on the bed. They almost sound peaceful. How could that be? He has been absolutely larious tonight - He has made us laugh out loud and even tried to run around...until he remembered he doesn't have the same freedom of movement that he used to have.

The beginning of the second round of chemo got off to an early start (Liam wasn't happy with me when I had to wake him up to take him to the hospital) and a slow start as we waited for a wet diaper which is needed before chemo can commence. Before Liam's illness, I didn't know much about chemotherapy. I thought is was something a person received for an hour or two via IV and then was done. Liam's chemo is a continuous 72-hour process. 72 hours of powerful drugs that basically take him to the brink of a word I can't even type in order to make him better. And, for every drug he receives as part of his chemotherapy, there are other drugs he receives to counteract the side effects. One drug can cause permanent bladder damage, so another drug is given to prevent it from happening. Another drug to counteract another potential side effect. The list goes on and on. And when Ursula or Dr. Kushner rattle off the names of the medicines, I try really hard to remember a phoenetic way to say them, but they're so long and have such an unnatural spelling that I'm not sure I'll ever be able to remember the names. All I know is that one is red like fruit punch but it's that one that is the one everyone calls the "bad" one. I can smell the chemicals through the pores of his skin. He has a slightly metallic smell. There are so many chemicals coursing through his little body that I have to wear gloves to protect myself when changing his diaper. He hates it when I wear gloves and cries, "Mommy - No Gloves, No Water, No Wipes...please, Mommy, No Gloves, No Water, No Wipes," when changing him. He associates water and wipes with pain.

There are 30+ beds in the Day Hospital and all are filled. The tops of the rooms are open and the ceiling of the area where the rooms are is glass so you can look up and see daylight. Liam thought it was pretty cool that you could see clouds and tall buildings. Liam, true to form, wanted n-o-t-h-i-n-g to do with his room. From 7:30 on we were only in the room to do diaper changes. We began the day making a "pizza" (melted cheese on top of a tortilla) for breakfast, followed by a trip to the fish tank to visit Nemo and his dad. And then we had to kill time waiting for the playroom to open at 8:30. Once the playroom opened, Liam's day truly began. He loves being in the giant playroom. He loves watching other kids, he loves the energy, loves the dizzying array of activities to do. And for my part, I'm amazed at just how much fun he's having in the midst of fighting a battle.

A few observations to share:

- Liam surprised me by taking over the responsibilty of pushing his IV pole when he's walking. He now realizes that he's attached to it, or maybe that it's attached to him. It made me so proud as a parent to see him make this discovery, and at the same time incredibly sad that he has to make such a discovery.

- His hair is almost all gone except for a fine layer that reminds me of the the tiny feathers on birds that are right next to their skin. Liam thinks it's hilarious to pull out what remaining hair he has and hand it to whoever is closest. If you'd like a lock of Liam's hair, ask now. It's going fast.

- He has never done this before, but he has become very in tune with emotions. He loves to tell us that he's really, really happy and he tells us frequently.

- He loves to talk to Ella on the phone and hear her voice. He loves to sing Twinkle Twinkle Star to her. According to Larry, she hums along as Liam is singing. One of his most frequent requests is to see pictures of Ella. When he's really upset, it's the one thing that makes him calm. He loves looking and when he's looking at her, I wonder what he's thinking about.

- He has a girlfriend, Jessie. She and her family are here from NC for treatment. (www.caringbridge.org, click on "visit a website," type in jessiegarren...with no space between the first and last name. Jessie and Liam made an instant connection when they met when they were both in patient. Now both are undergoing out patient treatment. We love Jessie. Liam loves to hold Jessie's brother's hand. Whenever Liam sees Jessie's brother, he insists that he holds his hand and participate in whatever activity he's doing. Last week they watched the movie "Cars" together.

- Glue is a new fascination...especially when it dries on his hands and he can peel it off.

- I can feel the anticipation of each parent who is called to walk through the orange door to meet with the doctors. When we're called to go through the orange door, I feel like my knees are going to buckle.

- You have a weird bond with the people who you were "in patient" with who are now "out patient." We're the same "class" hoping that we all graduate together.

- The Caillou factor. About three months ago, Liam switched his allegiance from Kipper to Caillou. We now know that three months ago the cancer was taking over his body. Caillou is bald. Liam is now bald. Is there a connection? In one Caillou episode, he goes to visit a friend who lives in a high rise apartment building. The friend lives on the 17th floor. The apartment we're staying at now is on the 17th floor. The next apartment we've rented beginning in April is on the...you guressed it...17th floor.

- The kindness of friends and strangers has been completely overwhelming. One act of kindness, whether it's bringing diapers to the hospital, dropping off cookies to the nurses on Liam's behalf, or sending us a "we're thinking about you" message gives us a shot of strength to keep going.

Tuesday, March 20, 2007

Tuesday March 20th Update

It's early Tuesday morning, the third week anniversary of Liam's diagnosis, and I'm so nervous with anticipation as to what the day holds that I can't sleep. I've been up since 4:30. Liam is asleep next to me on the couch - we never made it to bed - attached to an IV and portable pump. His little body is being primed for Round 2 of chemo which starts in a few hours. We're starting this round a day earlier than anticipated. Why? He rebounded faster than anticipated from Round 1 and his blood counts are high enough for him to be able to tolerate another round of chemo.

Here was our Monday. We had an 11 a.m. appointment at the Pediatric Day Hospital at Sloan Kettering. I had been warned by a few parents that the waits at the day hospital can be long, especially on a Monday. After an 1 1/2 hour wait, we finally were summoned to the IV room. In a very business-like fashion, the nurse swooped in on Liam without any warning to access his central line. One of the things about my son that amazed me very early on is his level of comprehension. If I give him a warning and explanation about what's going to happen, he's much better than if he's surprised. Unfortunately I didn't know the game plan and didn't have a chance to warn him. Needless to say, it was a very unpleasant visit to the IV room that left me angry and in tears with the nurse and Liam completely hysterical. As I was leaving the IV room in tears pushing Liam in his stroller, several mothers who were in the Day Hospital with their children immediately surrounded me and literally held me up. It was the most amazing act of kindness and literally gave me the dose of strength I needed to regain my composure. And what did Liam want from me in order to be comforted? "Mommy - sing Twinkle Twinkle Little Star."

The Day Hospital is amazing. It's sunny, bright, open, airy and FILLED with kids with all types of cancer at varying stages. There are babies, toddlers, pre-teens, teens, and lots of parents. There are kids "riding" their IV poles as their parents push them along. There are kids running around playing basketball. There are kids who don't feel so well who are resting on couches. There are kids who are painting, playing games, doing homework, watching movies, and just being kids.

After another shorter wait, I was called to enter the bright orange door that leads to the suite of doctor offices. In the doctor's suite, there are nine teams who treat nine types of cancer. What I like about Sloan-Kettering is that each team focuses on a specific type of cancer so the team we're working with works only with Liam's type of cancer. We were greeted by Ursula, one of the nurse practioners on the team who immediately gives you a sense of competency, and another doctor who has been at Sloan-Kettering for a year as a visiting doctor from Rome. The doctor from Rome and Liam immediately hit if off, even though Liam is becoming more and more wary of strangers these days. Ursula went through a battery of questions, delivered a ton of information, and I tried to keep up while watching Liam. Here's what I took away from our conversation. He recovered faster than anticipated from round 1 of chemo so we're starting round 2 on Tuesday which is a good thing. (We don't want to give the cancer cells a chance to figure out what just him them and begin reproducing.) His LDH levels, which are an indicator of cancer, are way down from when he was first admitted when they were "sky high." He's getting the same type of chemo that he had round 1. Rounds 3 and 5 are different than rounds 1, 2 and 4 and rounds 3 and 5 are when they use a drug that causes hearing loss in 50 percent of patients.

The doctor from Rome (I'm not even going to attempt to spell his name) and Ursula are somewhat of a slap stick comedy routine. They're both staring at their computers reviwing Liam's information. Every once in a while I see full body scans of Liam's little body pop up on their computers as they're looking at him and the cancer that has found a temporary home in his body. I turn away when I see the scans - I just can't look. But they're keeping up a steady stream of conversation and basically sounding very comfortable and familiar with the situation.

After another brief stop at the IV room to get hooked up to fluids to get his body primed for round 2, Liam wanted to go see the firemen. So, off we went to the fire station. As we were walking to the station, he said to me, "Mommy, I'm really, really, really happy." And I looked at him, kissed him, and told him that I was really, really happy too.

It's 6:45 and I have to get ready to go to the hospital.

Gretchen

Sunday March 18th Update

OK. Where to begin? It feels like a decade has passed since our last update – we're literally busy every moment of the day and when we're not, which is usually not until late at night, we're so exhausted that we fall asleep before our heads hit the pillow. It's after midnight on Sunday evening and Liam is still awake. We just finished blowing bubbles; having a few bites of "daddy toast" (peanut butter on whole wheat – his daddy's favorite breakfast treat); changing a diaper without him writhing in pain (thank you white blood cells for healing my son's tender tushie); singing a dozen rounds of Twinkle, Twinkle Little Star; watching Caillou (what else would we be watching?); and rubbing Liam's feet. On Saturday Liam's white blood cells and absolute neutrophil counts were high enough to gain him a ticket out of the hospital. As we were leaving the hospital, complete with two huge shopping bags and a large box filled with medicine and medical supplies, I felt the same way I did when I was leaving the hospital with Liam after he was born. Scared, apprehensive, hopeful and thrilled to have my baby boy. And in a sense I am bringing my baby home for the first time. Everything is different now. Everything is new.

On Friday morning, our nurse woke me up to tell me that Liam had visitors. It was the iron workers who are working on an addition to the Cornell Medical Building located across the streect from Sloan Kettering. The workers came to visit Liam, but unfortunately Liam was deep in sleep and knowing that his disposition isn't exactly chipper in the morning, I decided to let him continue sleeping. They left a hard hat personalized with his name, a wrench they use day-to-day to secure the steel beams, an iron worker's t-shirt and stuffed animal. And, to top it off…on the protective black draping that's covering the construction project, they spray painted "Get Well Liam," in bright orange paint. When I showed the writing to Liam and told him what it said, he giggled. I'm not sure if he understood what I was saying, but I certainly understood the giggle.

After we were released on Saturday, we came back to the apartment that has graciously been arranged for us as temporary housing for the big reunion with Ella. When the door opened, Liam looked at Ella, Ella immediately smiled at Liam and started running towards him. She stopped just short of him and they both stood within inches looking at each other. It was as if neither knew what to say to the other – they knew something was different but they didn't care, they were just happy to be back together. Within 10 minutes, Liam was pushing Ella so everything was back to "normal." The apartment was transformed into a giant toy-strewn playroom for the rest of the afternoon. We were having a good day until we had to try and give Liam his dose of super-power antibiotic for the evening. Let's just put it this way – after more than an hour of coaxing him to drink the antibiotic which was diluted in some of his favorite drink, we weren't getting anywhere fast. And after our effort to get most of it down, it all came back up. After a consult with the hospital at 1 a.m., we decided it would be easier to give the medication to him via his "tubies" (central line) so that he wouldn't become averse to taking medication orally. Sunday morning was spent back at the hospital. I explained to Liam why we were going to the hospital, promised him it would be a quick visit, and to my surprise he seemed to understand and accept. The three-block walk to the hospital seemed to be orchestrated just for him. The minute we got off the "alligator" (Liam's name for elevators), there were three fire trucks with lights on outside the apartment building. It was the same group of firemen who came twice to visit him while he was in the hospital. Behind the fire trucks was a police care with lights flashing, another Liam favorite. On the next block was a backhoe digging up a deep hole in the street which we had to stop and watch in action for a few minutes, and in the last block before the hospital was a doggie that looked just like Madison which Liam loved seeing. At the hospital, Liam was completely enthralled with Kenny who works in the urgent care center. And, like his stay on the 9th floor, I couldn't keep Liam in his room. He insisted on staying in his stroller and being pushed ("Mommy – Keep Walking!") throughout the Center during the time he was receiving his medication. He never even sat in the bed – didn't want anything to do with it – would only tolerate being on the move. One thing that amazes me is how comfortable he has become with his double central line that is now a part of his chest. He helps flush his lines with saline and heperin, and is completely fascinated with the IV pump…to the point that he knows where the mute button is to stop the beeping that seems to sound primarily in the middle of the night. After the IV machine started beeping to indicated that medicine was finished, he declared to the entire staff that he was "all done" and started waving goodbye. On the way back to the apartment, we stopped at the fire station that has "adopted" Liam to see the fire trucks up close and in person. Liam got to sit behind the wheel of a fire truck which made him smile a huge smile. Our visit was cut short by a call to respond to an emergency which allowed Liam to see the firemen rush to put on their boots, jump onto the fire truck and drive away. He was in awe. The rest of the afternoon was spent doing laundry, riding the "alligators" up and down and eating…and boy did he eat! Liam ate more on Sunday than he has eaten the last three weeks. It was unbelievable. He ate, and ate, and ate, and ate to the point that we were worried he would not be able to keep all the food down…but luckily he did. Daddy, Liam, Ella and Mommy spent time dancing to the Wiggles, talking about rainbows and butterflies, looking out the window at all the tall buildings, and enjoying spending time together. Liam is quickly losing his hair and at the rate he's going he'll be bald by the end of the week. My next mission is to find some soft hats for him.

It's now 1:30 a.m., Liam is finally asleep, and I have some work I need to get done, but I can barely keep my eyes open.

Thursday, March 15, 2007

Thursday March 15th Update

In bed next to Liam who is sleeping. He has his hand resting over my heart right now and is curled up next to me. Good news to share...His white blood cells went from .1 yesterday to .4 this a.m. That's huge and we needed a boost since yesterday was a particularly no good, very bad day.
He has been running a fever for 2 days. Ugh. He's on 3 super powerful antibiotics to try and fight off whatever is causing them. At this point we don't know what the cause is. And I've had two hospital people in the room this a.m. To tell me they're working on a donut to fit Liam's tiny little butt so that he can sit on something comfy. He needs to sit up so that he takes deep breaths and uses all of his lungs, but his little bottom is raw from diarrhea from chemo and sitting isn't a pleasant thought to him.
One of the things that is so amazing to me is how you have to be a vigilant keeper of your child's care, even at a world-renowned institution like MSKCC. We constantly are pushing to make sure he has gotten his medications (two days ago he missed two doses of an important medicine to help fight off painful sores in his mouth and GI tract) , the action points that are discussed during the daily morning consultation are acted upon, and that we as his parents and main cheerleaders are doing everything we possibly can to make him better.
He woke up at 4:30 am and wanted juice, a good sign. And before he went to sleep last night he did two very special things. 1. He told me he's a happy dinosaur and 2. Announced that he wanted to go on an airplane to take a trip with Mommy, Daddy and Ella.
Have to run...Liam is asking me to rub his feet.

XO
G

Wednesday March 14th Update

Today was the first day that I was not able to easily put on a happy face and bury the frustration and anger that has obviously been building in me over the last two weeks. I could feel the darkness and the rage wanting to come out from the minute I opened my eyes to the day. I had started to explain it to all of you in this entry and how the last 24 hours worth of events came to a head and the anger that I was feeling but instead I deleted it. I could not find words to adequately recount the details. The short of it was I was frustrated and tired of having to ask for things again and again and again before someone in the hospital would make it happen coupled with outside stress points like work, cost of NYC apts., apt. broker fees, Ella, health insurance, and what seemed to be one piece of bad news after another just made for a crappy day and I felt as if I was walking around in a dark cloud. I realized however that the dark cloud was gone whenever I was next to Liam, reading to him, rubbing his feet, holding him, walking with him, pulling him in his wagon, or just looking at him. At those moments the dark cloud was lifted and all that mattered was Liam.

Before I left the hospital last night around 10:00 pm, Liam as if to help me end the day on a brighter note gave me signs of hope. He was suddenly intrigued by a clamp on one of the fluid lines and he requested one of his Candella lights from Uncle Brad who was standing near the table where they sit. He proceeded to take the cover off and to then shine the light on the clamp as he moved the mechanism around trying to understand how it was put together and how it worked. A few seconds later he was shining the light onto a Caiou drinking cup and then out loud proclaimed WOW! when he realized that the cup had moving parts…over and over again Wow ending with a very soft almost whisper.. wow…….I told him I was leaving and that I loved him….”I love you Daddy” said Liam….”See you in my dreams” I said…”See you in my dreams Daddy” said Liam ….I left with love and hope in my heart and a smile on my face.

Wednesday, March 14, 2007

Glitter

It was two weeks ago today that Liam was admitted to MSKCC and it is hard to make sense of the time span. On one hand it feels like an eternity and that we have so far to go before he will be well again. On the other hand it feels like just yesterday we found out our son was ill and our lives would never quite be like they once were. So much has happened that our sense of time has become distorted. In the last two weeks we have dealt with the shock of the initial news, and quickly come to know more about cancer, chemo, it’s side affects, pump alarms, diaper rash, infection, chest tubes, nurses, hospital politics, NYC rental market, generosity, selfishness, sleeplessness, each other, true friends, fear, priorities, vomit, rubber gloves, blogs, family, blood counts, transfusions, non profits, biopsies, bone marrow, cat scans, hand washing, neutropenic, mucosis, fever, morphine, depression, heartache, sadness, joy, broker fees, oncology, fellows, insurance companies, patience, resilience, exhaustion, Liam, our son, and ourselves.

Liam had a good morning. His friend Gabriel who works as a Janitor in the hospital has really gone above and beyond to make Liam happy. Liam loves machines and the floor polisher is one cool machine in Liam’s eyes. No matter how busy Gabriel is he always stops and goes out of his way to attend to Liam’s requests to push buttons, hold the polishers handles, (I will get a picture of this at some point) wring the mop, turn on the fan used to dry the floors after mopping, and to provide Liam with opportunities for discovery and friendship. Searching for the floor polisher has been a great source of inspiration for Liam to take walks over the past few days. Gabriel’s simple, genuine; acts of kindness to my son do wonders for his spirits. Gabriel takes Liam’s mind off of his pain, and discomfort, not to mention his surroundings by simply playing to Liam’s little boy desire to see how things work. Gabriel truly is an angel.

Liam has discovered the magic of an ipod. Liam knows how and when to remove the blood pressure sleeve and selects what arm he wants the nurse to use. He places the pulse sensor on his finger and removes it when the machine sounds the beep telling the nurse that the test is complete. He pushes the syringe to help his nurse flush the lines in his chest with saline. He takes medicines by mouth without a bit of complaining as many as 10 times a day. He even helps the nurses take blood culture samples by pressing the test tube into the special adapter that allows blood samples to be taken from his chest tubes.

Liam has a friend name Jesse who I will guess is about 15 years old. She is a sweet young girl with beautiful red hair who like Liam seems too young and too cute to be so ill. She made Liam several gifts today, one being a star that states “Liam is a Super Star”. Jesse is fighting cancer as well and has been in a great amount of pain but today she found the strength to reach out to our dear 2 year old son who in turn rewarded her with one of his coveted popsicles. I think Liam and I will make Jesse a glitter card tomorrow to cheer her up even though I have a major aversion to glitter. The first time I walked into the play room and realized everything was covered with glitter I turned to Gretchen in absolute fear and proclaimed “OH NO there is glitter everywhere”. Needless to say I am slowly getting over my fear of glitter. Liam literally pouring it all over my lap has likely helped me face my glitter demons. Then again it may be that seeing Liam be so brave in all that he is facing has shown me that being afraid of glitter is kind of silly when you really think about it.
It is just glitter after all…………

Monday, March 12, 2007

Little Red Wagon


Liam has completed his first of 5 rounds of chemo. He has opted to spend most of his day in a large red wagon versus his hospital bed and likes to be pulled around the ward, so needless to say we are getting plenty of exercise. Liam decided yesterday that he wanted to spend his time in the comfort of the playrooms sitting area. A video player (so he can watch the Wiggles) has been placed in the room and today he was camped out on the floor of the sitting room on a blanket surrounded by his “puppies”. It appears that he no longer likes the confined rather sterile environment of his room. He has shown a bit of an appetite over the last 3 days and for that we are grateful.

Liam had a blood transfusion over the weekend to increase his red blood count and at the moment he is considered Neutropenic. It is the point after chemo when the white blood cell count drops to zero. It lasts a little over a week and it is during this time that he is most susceptible to bacterial and viral infections because he has no white blood cells to defend him. Liam has made it over the first of several mountains he must scale and is doing as well as can be expected. Gretchen and I are holding up if only because Liam needs our smiles and appearance of strength and control. I must say that we are truly amazed at what Liam has been able to endure and the strength and courage that he displays on a daily basis. Not to end on a sad note but Liam told us something yesterday that literally broke our hearts while Gretchen was reading one of his favorite books to him last night. The book is about good dinosaurs, bad dinosaurs, happy dinosaurs and sad dinosaurs. Liam looked at Gretchen and told her that he was a sad dinosaur……something a mother never imagines she will hear her child say to her. He is very aware that something is not right, he is not in his home, he is not with his sister and his dogs, but somewhere where he does not want to be. We pick ourselves up, swallow hard, and keep going.


Time 2:00 pm Monday …Ok… so I will not end on a sad not but on one that is encouraging and a testament to his strength….Liam has pushed a shopping cart filled with 3 containers of glitter around the ward for a distance of over a half a mile. Even his doctor is amazed at his resilience.

Friday, March 9, 2007

Dear Friends and Family

Our hearts were broken this past Monday when we learned that our beautiful two and a half year old son Liam has a rare form of children's cancer known as Neuroblastoma (for more information click here). A biopsy and bone marrow test earlier this week have confirmed he has stage 4 Neuroblastoma and in addition to the large tumor mass in his abdomen the diseased cells have spread to the bone marrow in his arms and legs. He already had a central line placed in his chest so that medicines can be given to him without the need for painful IV's. We have a trying year ahead of us as we work alongside Doctors at Sloan-Kettering to save Liam from a disease that is so cruelly trying to rob us of our Prince and the endless happiness he brings as a Son, a Brother, a Grandson, and as simply a loving little boy who loves animals, trucks, tractors, frogs, dinosaurs, and his 2 dogs.

The disease is curable and Liam is being cared for by Dr. Nai-Cong Cheung, Dr. Kushner, and Dr. LaQuaglia. The Sloan-Kettering team is considered the best in the world at fighting and removing this type of cancer.

Liam started chemotherapy on Friday, the first of 5 such treatments along with surgery, radiation, and innovative antibody treatments he will receive over the next 6 months to a year in an all-out effort to make him well again. One of us must be by his side 24 hours a day while he undergoes this very painful and difficult treatment, one that will make him weak, sick, and susceptible to infection and other illnesses as his white blood cell counts drop. We are currently looking for a 2 bedroom apartment in New York City so we can temporarily relocate the entire family to be within minutes of Liam's doctors and the Memorial Sloan-Kettering Cancer Center.

The blog is being launched to keep everyone up-to-date on Liam's progress along with ways you can help and encourage Prince Liam the Brave. He has already shown amazing bravery and strength that has us and even the doctors amazed and encouraged.

We know that this news will be as hard for you to believe and to absorb as it has been for us. Our world has been completely changed in a matter of minutes and we are now living a new reality. This reality is 100% focused on saving our son. Your prayers, encouragement, and support will give us the daily strength and courage to win this fight against an unwelcome and unfair attempt to steal the son of our dreams.

Sincerely,

Larry Witt & Gretchen Holt-Witt

Post your well wishes and messages for the family here

Tuesday, March 6, 2007

Post Your Well Wishes and Messages

Please post your words of love, encouragement, and any other information you feel will be of benefit to the family. Simply click the POST A COMMENT button and begin typing your message. When finished click PUBLISH YOUR COMMENT. Larry and Gretchen will be reading this page several times a week. Thank you.


Thursday, March 1, 2007

How You Can Help

Thanks to all who have come forward with support and generosity. Larry and Gretchen are humbled by the displays of love and kindness and it does much to help the family get through each day.

To give Liam the best care available for this rare, obscure disease, the family has been forced to go out of network, making substantial insurance co-pays imminent. Additionally, the family will need to rent an apartment in Manhattan to be close to Sloan-Kettering Cancer Center. Liam’s discharge date from the hospital is unknown at present, but it may be a long journey. Once he is discharged, the family will often need to live offsite but nearby, possibly for years.

Liam’s one year old sister Ellas’s world has also been turned upside down this last week. In the interest of providing as much security and love for this little girl, Gretchen and Larry hope to bring Ella to New York along with her caregiver. This will provide Ella with a consistent, rested caregiver and keep her close to Mom and Dad.

Many have asked how they may help make the road smoother for our friends in crisis. There are numerous ways we can help them.

Donate Time: For those of you who are close (NYC) helping them with errands, babysitting, laundry, or other simple tasks that take time away from their focus on Liam.

Donate Blood: Again for those who are close donating blood is a very personal way to support Liam. Click here for more information.

Visiting Liam: Unfortunately at this time, because of Liam's condition, they cannot accept visitors at the hospital. If you would like to send a card, please send to:

Liam Witt c/o Larry & Gretchen Witt,
31 Hoffmans Crossing rd.
Califon, NJ 07830

Financial Support: The reality of this situation is that the family will have astronomical costs associated with making Liam well. Sloan-Kettering is the best possible place for Liam to be but it is out of network and the costs of such specialized care runs very high. We have the power to lighten their load, freeing them to focus on giving Liam and Ella the love and care that only they can provide.

For those who would like to contribute, there are two ways to do so.

1. Make a tax deductible donation to Liam via the National Transplant Assistance Fund. Liam has chosen to fundraise with National Transplant Assistance Fund (NTAF) in part because NTAF provides both tax-deductibility and fiscal accountability to his contributors. Contributors can be sure that funds contributed will be used only to pay or reimburse medically-related expenses. Your donations to this fund will be put aside specifically for Liam.

To make a secure donation online click here

To donate via check: Print and complete the NTAF Donation Form and send along with payment directly to NATF. See mailing address on the form:

2. Donate directly to Liam. These flexible funds may be used at the family’s discretion without restrictions to pay for medical and non-medical expenses directly associated with the support and well being of Liam. The funds will be used for expenses like, medical costs, housing, and childcare. Any unused funds associated with Liam’s cure will be used to setup a foundation in Liam’s name to help find the cause of this childhood cancer in hopes that other families might not have to endure the pain that their family is enduring. Donations to this fund are not tax deductible.

Checks should be made payable to Liam Witt and mailed to:

Matt Sigler
JP Morgan Private Client Services
1 East Ohio Street, IN1-0175
Indianapolis, IN 46277
Reference acct# 2330553997

Phone: 317-684-3136

Blood Drive for Liam

April 19, 2007

The latest update on the donation needs.

RE: Platelets
Now required. Liam will be going into surgery in the next few weeks and will need platelets. Platelets will be required before and after his surgery.

Re: Blood
Liam will eventually require blood for his upcoming surgery. We would like to encourage you to donate especially if you or anyone you know has O negative as there is always a large demand for this particular blood type. Regardless of the blood type, donors are needed and anything that is donated will be held as credit for Liam.

Any and all donations will be helpful to not only Liam but will also benefit other patients as well.

Below is the information:

Whole Blood Donation

Liam can only take O negative blood because of his age and condition. People can either donate blood or platelets. Blood donated that is not compatible to Liam will be exchanged or swapped and will be held in his name for up to 30 days or until the very last minute when they know that he won’t need it and it will then given to other patients.

Platelet Donation

Platelets circulate in the blood and help control bleeding; due to their condition and/or intensive chemotherapy, some patients do not produce platelets. Until a patient recovers, the need for daily transfusions is critical. Facts about platelets:

- All blood types are acceptable when donating platelets.


- Donation of platelets require more careful timing. Donated platelets are held for 5 days – first 3 days for testing which only leaves 2 day in storage. They time it very carefully – Marion (the blood drive coordinator at Sloan Kettering) will work with the donors on the timing.


- Platelet donors only need 72 hours between donations, where as blood can be donated every 56 days.


- Donating blood takes about an hour, this includes filling out paperwork. Donating platelets takes about 2 ½ hours which includes time filling out paperwork. Products containing aspirin, ibuprofen or similar items can not be taken before platelet donations.


The donation process of platelets is similar to donating blood except that you are hooked up to a needle for a longer time (between 60 – 90 minutes). Your blood goes into a machine which spins out the platelets and re-circulates the blood back into your body. I was told that some people may feel tired or light-headed after donating blood but was told that you won’t experience these symptoms after donating platelets because oxygen is not hitting your blood stream. Platelets can only be stored for 5 days.

Information for Donors

If you plan to donate, please pre-screen yourself by reviewing the eligibility requirements on the website, www.mskcc.org/blooddonations; click on "general guidelines" to begin the review, then scroll to the bottom of the web page & click on "additional donor requirements" & review any section that is pertinent. Additional notes:

- Pregnant women cannot donate blood or platelets.
- Nursing mothers can donate blood but cannot donate platelets.

Since our regular coordinator is not available until May 29th, please call the Donor Room to schedule an appointment and tell them you are donating for Liam Witt.

The details are:

Donation Room Location:

Memorial Sloan-Kettering Cancer CenterSchwartz Building Lobby1250 First Avenue(between 67th and 68th Streets)New York, NY 10021

Donor Room Tel: 212-639-7648

Prior to scheduling the appointment, please check the Memorial Sloane Kettering Website to pre-qualify yourself as there are certain restrictions to blood and platelet donors. If you still have questions about eligibility after reviewing the website, please call Mary Thomas at 212.639.3335.

She needs:
- Legal name
- Cell # or Daytime #
- Home #
- Date of Birth

The donor room can take a maximum of 4 people at a time.

Donor Room Hours
Friday, Saturday, Sunday, and Monday from 8:30 AM to 3:00 PM
Tuesday, Wednesday, and Thursday from 8:30 AM to 7:00 PM


Free Parking
Vouchers for parking in Memorial Sloan-Kettering's parking garage are available to our donors at the time of donation. Our garage is located on East 66th Street between First and York Avenues.


Thank you.