Tuesday, May 29, 2007
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 27, 2007
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.
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 21, 2007
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.
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.
Thursday, May 17, 2007
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.
Tuesday, May 15, 2007
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
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
Saturday, May 12, 2007
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
Send to:
Liam Witt
31 Hoffmans Crossing rd.
Califon, NJ 07830
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