Tuesday, June 26, 2007
"I'm not comfy"
Day 2 down. 3 to go . 3F8s is tough and not quite the way it was described. In some ways, it's better. In others, it is much, much, much worse. It's definitely long days - 11 hours on Monday not including a four hour trip to the ER in the evening and nine hours today. One thing it is is all consuming and very difficult to watch. We'll give more details when our heads pop up above water, but for now we're doing everything we can to help our Prince. All he says to us as he endures the pain is, "I'm not comfy." He doesn't cry. He doesn't yell. He just whimpers and tells us over and over that he's not comfy. He won't take any pain medication when we're at home which makes the evenings difficult. The biggest differential between our perception of 3F8 and reality is that the pain lasts all day and all night. Yes, the super intense pain doesn't last more than 30 minutes but the pain doesn't go away afer that 30 minutes which is what I thought. The side effects from the heavy doses of narcotics (he's on something that is 3xs more powerful than morphine) makes him very unsteady on his feet and extremely restless at night. But even through pain and drug haze, his personality comes through. Tonight he ate something. (Monday - he ate nothing.) And as he was being served Smilers (silver dollar sized happy faces of mashed potatoes), he looked up and said, "Mmmm - They're perfect. Just perfect."
The Calm Before the Pain
Sunday Night, June 24th
So here we are. On the eve of the beginning of the next phase of treatment. We have to be at the hospital at 7:30 a.m. to start our first day of 3F8 treatment. Last Tuesday’s meeting with Dr. Kushner effectively closed the first book in our trilogy. The initial treatment - five rounds of chemo and surgery - is called induction. I’ve often wondered if we’re being inducted into some Cancer Club that we forgot we filled out an application to join. Wait – this isn’t the club I was hoping to get in….I was looking for the Average Family Club. The second book in our journey will primarily be 3F8 treatment, with a sidebar story on radiation and another on the likely surgery to deal with the scar tissue on Prince Liam’s ureter.
3F8s have been the carrot at the end of the chemo and surgery stick that we’ve been working towards since February 28th. It’s been the thing I’ve been eager to get Liam to in terms of his treatment, but it’s also the thing I’ve been dreading. Listening to children enduring the pain associated with 3F8 is how I came up with the description of Little Shop of Horrors for the Day Hospital. The screams are so painful to hear that many days it would make me cry. Whenever Liam would ask me why a child was screaming, I’d give him a myriad of excuses…usually that the child has a stinky diaper and doesn’t want to get it changed. (Ever since an extremely painful bout of diaper rash after round 1 of chemo, Liam has been reticent to have his diaper changed.) Now all of the sudden we’re very likely going to be one of those children doing the screaming. How in the world am I going to explain this one to Liam the Brave and Inquisitive? I haven’t come up with an explanation for pain so intense that even a pain medication three-times as potent at morphine can’t alleviate. It’s hard to stay focused and in the moment with this looming ahead.
The transition from Book I to II has been jarring and abrupt. There was no climax at the end of Book I. The close to book I, our meeting with Dr. Kushner, was very matter-of-fact, all while trying to entertain Liam in the non-kid-friendly office/exam room we were in. It wasn’t a “Hey – This is great – You guys made it through five rounds of chemo and a 10+ hour surgery and dodged all the pitfalls – Congratulations!” Don’t get me wrong – it was a positive meeting but there were no champagne corks being popped and bubbly poured. Now, of course, in the whole scheme of things we’ve cleared a lot of hurdles…some heavy-duty major hurdles…but we still have hurdles in front of us to clear. The main one being time. One of the most difficult things about our meeting with Dr. Kushner was trying to entertain Liam. Our Prince was eager to be out and about and exploring…not in an office/exam room. After playing with everything that had a button, trying to remove the thumbtacks from the cork board, and looking for anything he could do to amuse himself…he discovered the excitement of an examination stool with wheels. The next thing we knew, Liam was pushing the stool and running up and down the hallway outside the room we were meeting. Back and forth Liam went past the room. Here we were talking about his life when all he wanted to do was enjoy one of life’s simple pleasures.
And then the meeting was over. And Larry went to work. And I stayed at the hospital with Liam for a dose of antibiotics. From the hospital, I took Liam with me to a hotel to set up for a two-day work event. And that was it. That was the end of chemo. I can throw away the rolls of paper towel and containers to catch throw up that are in every room. I can throw away the chemo diapers that don’t hold anything except a drop of urine. I can get rid of the butt paste. The layers of waterproof sheets on his bed can go. The rubber gloves to protect us mere mortals from chemo-laced urine in Liam’s diapers can take a backseat to cars and trucks. And the bottle after bottle of medicine to treat side effects of chemo can all go. And Nystatin, the medicine that prevents mouth sores that happen during chemo is also not needed any more. But even though I know they all can go, I haven’t done it yet. Maybe it’s the fear of the unknown that has prevented me. And it’s hard to comprehend what this new phase of treatment will look like. I finally just a handle on chemo, now I need to learn a whole new way of life.
On the eve of a new phase of our journey I’m scared and sad thinking about the pain Liam will endure. I would do anything to go through the pain instead of him. I would do anything to relieve his discomfort….anything. As numb as I sometimes feel about what’s going on, Liam continues to be such an inquisitive, perceptive little boy. We’ve had to do several of the last dressing changes. They’re still not pleasant, but they’re not the screaming fits they used to be. And at the end of every one as Larry is literally drenched with sweat from stress, Liam says…unsolicited, “Thank You Daddy. Thank you Daddy.” We don’t know why he says it. He just does. But that’s Liam. He’s always more concerned about others. And today when I was driving in the car with Liam to pick up his new food fad, tater tots, he was singing “Oh Where Oh Where Has My Little Dog Gone” in his sweet voice just as happy as could be. He’s back to making up words to songs. He’s back to joking around. He’s still very skinny and eating isn’t something that comes easily, but he’s eating. His little face is still my sweet, adorable little boy’s face even without eyebrows, eyelashes or hair. But I do miss seeing his long, luxurious eyelashes.
So here we are. On the eve of the beginning of the next phase of treatment. We have to be at the hospital at 7:30 a.m. to start our first day of 3F8 treatment. Last Tuesday’s meeting with Dr. Kushner effectively closed the first book in our trilogy. The initial treatment - five rounds of chemo and surgery - is called induction. I’ve often wondered if we’re being inducted into some Cancer Club that we forgot we filled out an application to join. Wait – this isn’t the club I was hoping to get in….I was looking for the Average Family Club. The second book in our journey will primarily be 3F8 treatment, with a sidebar story on radiation and another on the likely surgery to deal with the scar tissue on Prince Liam’s ureter.
3F8s have been the carrot at the end of the chemo and surgery stick that we’ve been working towards since February 28th. It’s been the thing I’ve been eager to get Liam to in terms of his treatment, but it’s also the thing I’ve been dreading. Listening to children enduring the pain associated with 3F8 is how I came up with the description of Little Shop of Horrors for the Day Hospital. The screams are so painful to hear that many days it would make me cry. Whenever Liam would ask me why a child was screaming, I’d give him a myriad of excuses…usually that the child has a stinky diaper and doesn’t want to get it changed. (Ever since an extremely painful bout of diaper rash after round 1 of chemo, Liam has been reticent to have his diaper changed.) Now all of the sudden we’re very likely going to be one of those children doing the screaming. How in the world am I going to explain this one to Liam the Brave and Inquisitive? I haven’t come up with an explanation for pain so intense that even a pain medication three-times as potent at morphine can’t alleviate. It’s hard to stay focused and in the moment with this looming ahead.
The transition from Book I to II has been jarring and abrupt. There was no climax at the end of Book I. The close to book I, our meeting with Dr. Kushner, was very matter-of-fact, all while trying to entertain Liam in the non-kid-friendly office/exam room we were in. It wasn’t a “Hey – This is great – You guys made it through five rounds of chemo and a 10+ hour surgery and dodged all the pitfalls – Congratulations!” Don’t get me wrong – it was a positive meeting but there were no champagne corks being popped and bubbly poured. Now, of course, in the whole scheme of things we’ve cleared a lot of hurdles…some heavy-duty major hurdles…but we still have hurdles in front of us to clear. The main one being time. One of the most difficult things about our meeting with Dr. Kushner was trying to entertain Liam. Our Prince was eager to be out and about and exploring…not in an office/exam room. After playing with everything that had a button, trying to remove the thumbtacks from the cork board, and looking for anything he could do to amuse himself…he discovered the excitement of an examination stool with wheels. The next thing we knew, Liam was pushing the stool and running up and down the hallway outside the room we were meeting. Back and forth Liam went past the room. Here we were talking about his life when all he wanted to do was enjoy one of life’s simple pleasures.
And then the meeting was over. And Larry went to work. And I stayed at the hospital with Liam for a dose of antibiotics. From the hospital, I took Liam with me to a hotel to set up for a two-day work event. And that was it. That was the end of chemo. I can throw away the rolls of paper towel and containers to catch throw up that are in every room. I can throw away the chemo diapers that don’t hold anything except a drop of urine. I can get rid of the butt paste. The layers of waterproof sheets on his bed can go. The rubber gloves to protect us mere mortals from chemo-laced urine in Liam’s diapers can take a backseat to cars and trucks. And the bottle after bottle of medicine to treat side effects of chemo can all go. And Nystatin, the medicine that prevents mouth sores that happen during chemo is also not needed any more. But even though I know they all can go, I haven’t done it yet. Maybe it’s the fear of the unknown that has prevented me. And it’s hard to comprehend what this new phase of treatment will look like. I finally just a handle on chemo, now I need to learn a whole new way of life.
On the eve of a new phase of our journey I’m scared and sad thinking about the pain Liam will endure. I would do anything to go through the pain instead of him. I would do anything to relieve his discomfort….anything. As numb as I sometimes feel about what’s going on, Liam continues to be such an inquisitive, perceptive little boy. We’ve had to do several of the last dressing changes. They’re still not pleasant, but they’re not the screaming fits they used to be. And at the end of every one as Larry is literally drenched with sweat from stress, Liam says…unsolicited, “Thank You Daddy. Thank you Daddy.” We don’t know why he says it. He just does. But that’s Liam. He’s always more concerned about others. And today when I was driving in the car with Liam to pick up his new food fad, tater tots, he was singing “Oh Where Oh Where Has My Little Dog Gone” in his sweet voice just as happy as could be. He’s back to making up words to songs. He’s back to joking around. He’s still very skinny and eating isn’t something that comes easily, but he’s eating. His little face is still my sweet, adorable little boy’s face even without eyebrows, eyelashes or hair. But I do miss seeing his long, luxurious eyelashes.
Wednesday, June 20, 2007
I wish... I wish... upon a star....
Last Friday night was our first night back at our home in New Jersey and those of you on the east coast may remember it was an absolutely perfect summer day. Around 10:00pm Friday evening Liam comes up to me and says Daddy! I want to go and see the frogs. I explain to Liam that we will need to get a flashlight to see them since it is night night outside so we head out to the garage and grab one before heading out to the pond. Liam all the while is mimicking the sound of a frog...ribbit..ribbit while bouncing in my arms. We hear the frog chorus and their spashes as several jumped into the water as we drew nearer. We turn on the light and begin to count them. Theres one Daddy! Look Liam over there by the tree. 2, 6,13,9,11,4,1 Liam shouts with Glee as he counts them. 12 frogs in all setting a new record for our little water habitat. Liam then points to the other side of the yard and says that he wants to go over there. I am not sure where he wants to go and so I ask him. He replies in his sweetest little boy voice...Daddy I want to lay down and look at the stars. I quickly realize Liam was pointing to the hammock. Liam has not asked to see the Frogs since last summer and Liam has never asked me to look at the stars together especially while lying in the hammock. Before climbing into the hammock we run inside to grab a blanket since it was a bit cool outside. Liam gets comfortable lying on my chest and then asks where the bright star is and together we search for it in the perfectly clear night sky. Where is Mr Moon Daddy? Just over the hill I reply...he is hiding. Liam giggles. We rock gently back and forth in the hammock as I reflect back on the times I stared up at the heavens as a kid. I begin to softly sing twinkle twinkle little star to him. The song that got Liam through many of the scary days early on in his treatment...the song he would ask Gretchen or I to sing anytime he was scared. I used to play a game when looking up at the stars as a young kid. It was a simple game played with god. I would ask God to show me he was real or that he could hear my thoughts and prayers by having a star shoot across the sky. A silly kids game that often left you with more questions than answers. I played this same game late Friday night but now as an adult, a scared father holding his precious sleeping son in a hammock under a brilliant night sky. I imagined future camping trips with Liam on nights just like this one. I imagined his world with no more hospitals, pain, or uncertainty. I felt his warm forehead against my cheek and wondered how this very feeling, this bond, this pure love, this life of his could be so tenuous and so violated. I searched the sky for answers to my fears my questions, my purpose as I began to doze off..........I awoke minutes later to the sound of frogs and the twinkling night sky before my eyes...seconds later a brilliant flash of light moves from left to right across the sky then fading, fading, gone. I ever so quitely took Liam inside to bed. Gretchen asked me if Liam and I had fun looking at the frogs and I simply replied ...."Liam just gave be the best fathers day present ever".
The rest of the weekend was filled with laughter and hundreds of questions from our inquisitive little guy...Mr. Why? and his sassy sidekick Miss Whas dat? Ella was funnier than ever and absolutely loved the pool now that she is old enough to get it. The two of them are quite entertaining to watch and when they play nicely together it is an absolute joy to see. Liam is not quite sure what to make of his suddenly bold, fearless, and loud little sister who takes great pleasure in pestering him. Liam had more energy than he has had since the weekend before he was diagnosed nearly 5 long months and a lifetime ago.
Our meeting with Doctor Kushner less than 48 few hours away certainly tempered our mood as we watched our children work to become brother and sister again this past weekend.
Monday and Tuesday have come and gone as has the meeting we anticipated and feared with Liams Doctor. The results are truly encouraging and after 5 rounds of chemo and 5 months of bloody battle Liams cancer is being pushed back! The battery of tests last week confirm all of our hopes and prayers. Liam no longer shows "visible evidence of disease" His MIBG scan that had highlighted numerous areas of disease when first diagnosed was clear as was the CT scan and the bone marrow tests. Dr. Kushner is extremely pleased with Liams progress and has declared that Liam is ready for the next phase of treatment. No more chemo therapy. Please do not misunderstand, Liam still has cancer and Neurboblastoma cancer cells lurking in his body that need to be eradicated...the battle is not yet won but this is a significant mile stone. Liam will begin the immunotherapy next Monday or as we have likely referred to it in the past ..3f8's or mouse antibody treatment. We will get into the details of this treatment at a later date. You may remember that this part of the treatment is going to be the most painful for Liam. He has not really experienced a great deal of pain up to this point but more discomfort and annoyance. The 3f8 treatment causes severe pain for a good part of the 30 minutes it takes to inject the antibody, requiring heavy doses of pain medication. To put it simply they cannot give enough pain medication to make it painless without causing a child or adolescent serious issues. Each round of 3f8's lasts a week with 3 weeks between treatments. Liam will also undergo a week of radiation to treat the abdominal area where the tumor resided to lessen the likelihood of it coming back. One of the tubes leading from his kidney to his bladder is partially obstructed due to some scar tissue from surgery but it is of little concern to his doctors and surgeons and treatable if need be. He will have an ultrasound performed on July 8th to provide more insight into the severity. Liam will also begin taking Acutane....yes some of you know this as the medication for acne that received press several years ago after being tied to teenage depression and suicidal tendencies. It is simply Vitamin A in a sort of suped up mega dose that has been found to lessen the likelihood of a relapse....something Neuroblastoma is well known for. We have many months of treatment yet ahead of us but we are on to the the next phase...the playoffs if you will! Not all make it to this point with so few setbacks. It is a huge win for Liam and all of us who love him and cherish him. We would not be at this point if it were not for the support, positive thoughts, prayers, tears, hugs, food, financial support, time, friendship, cards, fund raising, toys, books, blood, and love, so many of you have shown us during our time of greatest need. It is truly working........Go Prince Liam the Brave Go!
The next battle to be waged against our relentless enemy will begin next week with a strong army of 3f8 soldiers along with all of you supporting our Prince in battle.
I wish I wish upon a star..........
The rest of the weekend was filled with laughter and hundreds of questions from our inquisitive little guy...Mr. Why? and his sassy sidekick Miss Whas dat? Ella was funnier than ever and absolutely loved the pool now that she is old enough to get it. The two of them are quite entertaining to watch and when they play nicely together it is an absolute joy to see. Liam is not quite sure what to make of his suddenly bold, fearless, and loud little sister who takes great pleasure in pestering him. Liam had more energy than he has had since the weekend before he was diagnosed nearly 5 long months and a lifetime ago.
Our meeting with Doctor Kushner less than 48 few hours away certainly tempered our mood as we watched our children work to become brother and sister again this past weekend.
Monday and Tuesday have come and gone as has the meeting we anticipated and feared with Liams Doctor. The results are truly encouraging and after 5 rounds of chemo and 5 months of bloody battle Liams cancer is being pushed back! The battery of tests last week confirm all of our hopes and prayers. Liam no longer shows "visible evidence of disease" His MIBG scan that had highlighted numerous areas of disease when first diagnosed was clear as was the CT scan and the bone marrow tests. Dr. Kushner is extremely pleased with Liams progress and has declared that Liam is ready for the next phase of treatment. No more chemo therapy. Please do not misunderstand, Liam still has cancer and Neurboblastoma cancer cells lurking in his body that need to be eradicated...the battle is not yet won but this is a significant mile stone. Liam will begin the immunotherapy next Monday or as we have likely referred to it in the past ..3f8's or mouse antibody treatment. We will get into the details of this treatment at a later date. You may remember that this part of the treatment is going to be the most painful for Liam. He has not really experienced a great deal of pain up to this point but more discomfort and annoyance. The 3f8 treatment causes severe pain for a good part of the 30 minutes it takes to inject the antibody, requiring heavy doses of pain medication. To put it simply they cannot give enough pain medication to make it painless without causing a child or adolescent serious issues. Each round of 3f8's lasts a week with 3 weeks between treatments. Liam will also undergo a week of radiation to treat the abdominal area where the tumor resided to lessen the likelihood of it coming back. One of the tubes leading from his kidney to his bladder is partially obstructed due to some scar tissue from surgery but it is of little concern to his doctors and surgeons and treatable if need be. He will have an ultrasound performed on July 8th to provide more insight into the severity. Liam will also begin taking Acutane....yes some of you know this as the medication for acne that received press several years ago after being tied to teenage depression and suicidal tendencies. It is simply Vitamin A in a sort of suped up mega dose that has been found to lessen the likelihood of a relapse....something Neuroblastoma is well known for. We have many months of treatment yet ahead of us but we are on to the the next phase...the playoffs if you will! Not all make it to this point with so few setbacks. It is a huge win for Liam and all of us who love him and cherish him. We would not be at this point if it were not for the support, positive thoughts, prayers, tears, hugs, food, financial support, time, friendship, cards, fund raising, toys, books, blood, and love, so many of you have shown us during our time of greatest need. It is truly working........Go Prince Liam the Brave Go!
The next battle to be waged against our relentless enemy will begin next week with a strong army of 3f8 soldiers along with all of you supporting our Prince in battle.
I wish I wish upon a star..........
Tuesday, June 19, 2007
Tuesday Morning June 19th
When I think about what life has been like the past 3 ½ months, it feels like we’ve been swimming in an angry sea among giant waves that crash over our tiny boat in an attempt to capsize us. Sometimes we’re under the water with a faint glimpse of sunlight above. During those times, it hurts to breath. Other times the waves seem to slow down just enough to allow you to see what’s on the horizon, fill your lungs with air, and give you a chance to see the sun. The sea has been relentless in its ferocity and the physical as well as mental energy it takes to stay a step ahead of the next wave is numbing. One of the greatest challenges has been to try and maintain a sense of normalcy in a time of great abnormality. I always feel like I’m trying to stay a step ahead of Liam’s next question and try to come up with an explanation that he’ll find acceptable when explaining something new or different that’s about to happen to him. (He doesn’t like surprises – he wants to know everything that’s about to happen so that he can mull it over and decide how he feels about it.) Sometimes I’m trying to figure out how to explain something to him as I’m learning how to pronounce the name of a procedure. How does a parent explain to a newly minted 3-year old what a CT scan is vs. an MIBG scan and how the picture taken with both cameras is different? How does a parent account for time lost during anesthesia? The good news is I don’t have to account for the loss of hair, eyelashes or eyebrows…he doesn’t know they’re missing. He still has enough hair on his head to think he has a full head of hair. I’m so used to seeing him without hair and eyelashes that it wasn’t until I saw photos today of my little pumpkin with his beautiful hair, expressive eyebrows and luxurious eyelashes that I realized just how different he looks. To me, he looks like Liam. I don’t notice the difference…I just see my son who makes me laugh from my heart. Today he was annoyed with the hair he does have and kept trying to pull it out. He became completely frustrated that it wasn’t easily pulling out. He demanded to know where his “magic hair” was and why he had this new hair that wasn’t easy to pull out. Ah, the good old days of magic hair when Liam could pull handfuls of his hair out with a single pull.
Wednesday, June 13th didn’t start out so smoothly. We had one objective for the morning: Get Liam to drink the horrible-tasting contrast fluid needed in order to get a good CT scan reading. The small amount of contrast fluid is mixed with 8-ounces of apple juice, but even diluted it still tastes “yucky.” Larry and I mapped out our pre-contrast strategy…we decided to wake Liam up around 8 a.m. in order to give us enough time to get the contrast in him…one sip at a time. But we also knew that if it wasn’t going well, we would need to give ourselves enough time to get to the hospital to have an NG tube painfully snaked down Liam’s nose in order to get the fluid in him. Because of anesthesia, he couldn’t eat anything other than clear liquids. Liam woke up at 6:15 a.m. begging for his special juice filled with calories but unfortunately on the banned list since it wasn’t clear as well as a bowl of mac and cheese. OK – Quick…what do we tell him so he doesn’t refuse the contrast cocktail and still is confident that we’ll bring on his requested foods and drinks of choice? Hmm. Time’s up. We told him he was getting his picture taken that morning, that it was a very special picture because it was of the inside of his body, and that unfortunately he would have to wait until after the picture was taken to eat anything BUT we would write down every food he wanted to eat for him and get it as soon as the picture was taken. He paused, thought about it, thought some more, and then asked for pizza. Out came the list of paper. He helped to hold the pen as we started writing every food he requested. But now, we had to break the news to him about the contrast. We explained that in order to get a really good picture, he needed to drink a cup of apple juice. We did everything we could think of to get him to drink it…all while watching the clock tick by knowing that we were on a schedule. We moved the contrast drink from cup to cup. We changed straws multiple times to find the one that he would drink from. We switched from drinking to squirting a syringe full of the fluid in his mouth. I poured a glass of apple juice to drink alongside. Liam and I would clink glasses and say, “cheers,” something that always gets him excited about drinking (a discovery made the week before in an attempt to get him to drink more fluids). But ultimately he wasn’t drinking fast enough. We moved to Plan B and started collecting everything needed for our day at the hospital. And then all of the sudden he decided to drink…one 6 ml syringe at a time. I can’t even count the number of syringes it took. But Liam drank them one after another and kept asking, “Almost done?” after every one. But he drank it all. Every drop. And we were grateful to have avoided “The Tube.”
At the hospital we were given three syringes of SSKI drops, another really yucky tasting medicine, and told to give one to Liam each day for the next three days. The drops protect his thyroid from the nuclear medicine that’s injected into him for the MIBG scan. Ah. Another thing to worry about in the future…but you can’t think about that right now…you just need to get through the task at hand. Off to the CT scan waiting area and there we were with three other children also waiting to be scanned. It feels a bit like an assembly line, but it’s good because you want to be in a place that treats lots and lots of children so that you’re dealing with the group that has the most experience. On Liam’s chart was a note to change his dressing and remove the steri strips covering the incision from surgery that he had grown attached to and wouldn’t let us remove. And then there was a delay…of 30 minutes…which made us panic knowing that the contrast had to stay in his system in order to be effective and every minute that went by the likelihood increased that he would pee it out. And the whole time this is happening, Liam is happily watching “Rudolph the Red Nosed Reindeer” like he has the three other times he has waited for a CT scan, on the purple-colored portable TV/DVD combo player. He was so relaxed, he actually fell asleep waiting to get his picture taken. And then it was his turn. I carried him into the room with the camera, he was fascinated with it. I explained that he would lie down on a table and go through the hole in the middle and it would take a picture of his whole body. He was even more fascinated. And then I showed him the room filled with people who were going to look at his picture. And then the anesthesiologist injected medicine into one of his tubies and he fell asleep within seconds in my arms. And I could finally cry since Liam was asleep. I placed his body carefully on the scan bed, kissed him, put one of his puppies in his hand, and reminded the nurse to put Bacitracin on his central line when she changed his dressing. Leaving Liam in the hands of others is one of the things I find extremely difficult. It always makes me cry. But today before I left the room, I said a quick prayer to the machine. As soon as the test was over, he was wheeled out on a pink crib-sized hospital bed into the hallway. We helped him to wake up and he immediately wanted to know where the camera was. He doesn’t understand the concept of losing time from anesthesia and at this point, doesn’t know he has been asleep.
So much for the CT, now onto nuclear medicine to get the injection needed for the MIBG scan. We checked in, waited, and then noticed some fine print on one of the many pieces of paper handed to us that said the SSKI drops needed to be in Liam three hours prior to the injection. He was supposed to receive the injection at 2:30. It was around noon. The timing might have worked if there wasn’t a CT scan delay, but now we missed our injection window. What infuriated me is that no one said anything to us about taking the SSKI drops PRIOR to the injection. What infuriated me even more was the snippy receptionist who called back to nuclear medicine to confirm. She said, “The parents didn’t give their kid the drops,” as if we were negligent parents who were trying to cause our son harm. Under normal circumstances, something like a snippy receptionist maybe wouldn’t get to me. Under these circumstances, I was seething. After I explained to her that no one told us he needed the medicine within a certain timeframe, that we didn’t intentionally screw up the timing, that there was a delay in the CT room, and that she might want to think about taking a different approach when dealing with parents of children who are going through this process and already stressed. She wouldn’t look at me again but the person who was working next to her took over, apologized for the frustration and miscommunication, and told us that we couldn’t get the injection for several hours so we might want to take a walk or go to the cafeteria. We went to the cafeteria so that Liam could begin to eat some of the foods listed in writing in scribble on the yellow Post-it now crumpled in Larry’s pocket. We started with French fries, orange juice, and frozen yogurt with chocolate chips. And then he threw up. In the cafeteria. One French fry at a time. And then he wanted more. And more. But they weren’t hot enough. So we had to go back to the grill area , ask for some fresh fries to be made even though there were fries already prepared waiting to be eaten, and hope that the person at the grill would honor Liam’s request. Fortunately, he did. And Liam ate hot French fries while sitting on the ledge of the grill counter where trays are usually pushed, watching the two grill cooks prepare food and asking them every step of the way what they were doing. Watching Liam eat is a beautiful sight.
Back to Nuclear Medicine. We were brought back to a room that Liam and I have been to before. So it wasn’t completely strange to him. But we weren’t in the same chair, so it was a little disconcerting. The injection is delivered in a metal tube in order to protect people handling it from the radioactive material. And again as a parent you’re left with the feeling of, “how can this be right – to inject radioactive material into my precious child?” After the injection, I took Liam into the room with the Scan machine. It’s a big room, but the scanner is even bigger. It takes up almost the entire room from floor to ceiling. And it has two panels that look like small solar panels that are suspended on either side of the bed. Liam explained to me that the bed goes through the hole to take his picture. And then we talked about the funny looking panels that looked like they moved around the bed. He wanted it to take a picture “right now.”
On Thursday morning we were back at nuclear medicine. As I carried Liam into the room, I was directed to a different area behind a linen storage closet where another MIBG scanner was located. Without the benefit of walls to frame the scanner, it looked even bigger and more intimidating. Any change in schedule throws Liam for a loop. He wasn’t prepared to be in a different area, but I showed him it was exactly the same machine. He was very quiet but he was OK. And then he was asleep in my arms. And again I was placing his anesthesia-limp body on a scanner bed and praying. As I was walking out of the room, his nurse asked us where we were going to meet him, a question that confused me since I’ve only met Liam in the same room when the test was over. Did something change? Were things different? “He’s having bone marrows done today,” said his nurse. “No – He’s not,” I said. And then started a “what are you talking about” conversation as Liam is asleep on the table. It’s challenging enough on a daily basis weaving a web of explanations and expectations for Liam to be comfortable of the situation he’s in. To have a surprise thrown at you that I can’t even explain to him because he’s already under anesthesia threatens is challenging. I absolutely hate leaving Liam in a room to be scanned. I hate leaving him. But I did to try to figure out what was going on. Guess what? Someone forgot to call us to tell us there was a change. Thanks for the notice.
After Liam woke up in another room with four bandages covering the spots where a needle was injected into his pelvis to draw bone marrow, he was a bit perplexed about where he was. And when he wanted to know why he had new bandages, I quickly explained that one of the things they needed to do when taking his picture was to take a little blood. And the bandages covered where they took the blood. He was fine. What he didn’t like was discovering a cup sealed to his private parts to collect his pee. It was initially covered with a diaper, but eventually he noticed a tube snaking out from his diaper which led to a whole discussion about what it was and what it was doing. And then what we thought was going to be a short day at the hospital turned into one very long day with urine collection, a blood transfusion (thank you donor), a platelet transfusion (thank you donor) and hours of urine collection. Liam took everything in stride. He was fine with every explanation, was familiar with the transfusion process, and took it all Liam-style…calm, cool and inquisitive. The end of the day was capped off trying to get him to pee. The cup made him nervous and he wouldn’t pee…even though he had been receiving fluids all day. He was so uncomfortable that he had to lie down. But he wouldn’t pee. We explained to him that we needed him to pee in order to leave. We told him it was really important. He made up a song about pee. The nurse increased the amount of fluid he was receiving to try and get things moving. He said he didn’t want to go. We took a walk. Half way to the fish tank, he started peeing and peeing and peeing. It was a good thing.
And now we wait. Today at 10:30 a.m. we have a meeting with Dr. Kushner to go over the test results.
Wednesday, June 13th didn’t start out so smoothly. We had one objective for the morning: Get Liam to drink the horrible-tasting contrast fluid needed in order to get a good CT scan reading. The small amount of contrast fluid is mixed with 8-ounces of apple juice, but even diluted it still tastes “yucky.” Larry and I mapped out our pre-contrast strategy…we decided to wake Liam up around 8 a.m. in order to give us enough time to get the contrast in him…one sip at a time. But we also knew that if it wasn’t going well, we would need to give ourselves enough time to get to the hospital to have an NG tube painfully snaked down Liam’s nose in order to get the fluid in him. Because of anesthesia, he couldn’t eat anything other than clear liquids. Liam woke up at 6:15 a.m. begging for his special juice filled with calories but unfortunately on the banned list since it wasn’t clear as well as a bowl of mac and cheese. OK – Quick…what do we tell him so he doesn’t refuse the contrast cocktail and still is confident that we’ll bring on his requested foods and drinks of choice? Hmm. Time’s up. We told him he was getting his picture taken that morning, that it was a very special picture because it was of the inside of his body, and that unfortunately he would have to wait until after the picture was taken to eat anything BUT we would write down every food he wanted to eat for him and get it as soon as the picture was taken. He paused, thought about it, thought some more, and then asked for pizza. Out came the list of paper. He helped to hold the pen as we started writing every food he requested. But now, we had to break the news to him about the contrast. We explained that in order to get a really good picture, he needed to drink a cup of apple juice. We did everything we could think of to get him to drink it…all while watching the clock tick by knowing that we were on a schedule. We moved the contrast drink from cup to cup. We changed straws multiple times to find the one that he would drink from. We switched from drinking to squirting a syringe full of the fluid in his mouth. I poured a glass of apple juice to drink alongside. Liam and I would clink glasses and say, “cheers,” something that always gets him excited about drinking (a discovery made the week before in an attempt to get him to drink more fluids). But ultimately he wasn’t drinking fast enough. We moved to Plan B and started collecting everything needed for our day at the hospital. And then all of the sudden he decided to drink…one 6 ml syringe at a time. I can’t even count the number of syringes it took. But Liam drank them one after another and kept asking, “Almost done?” after every one. But he drank it all. Every drop. And we were grateful to have avoided “The Tube.”
At the hospital we were given three syringes of SSKI drops, another really yucky tasting medicine, and told to give one to Liam each day for the next three days. The drops protect his thyroid from the nuclear medicine that’s injected into him for the MIBG scan. Ah. Another thing to worry about in the future…but you can’t think about that right now…you just need to get through the task at hand. Off to the CT scan waiting area and there we were with three other children also waiting to be scanned. It feels a bit like an assembly line, but it’s good because you want to be in a place that treats lots and lots of children so that you’re dealing with the group that has the most experience. On Liam’s chart was a note to change his dressing and remove the steri strips covering the incision from surgery that he had grown attached to and wouldn’t let us remove. And then there was a delay…of 30 minutes…which made us panic knowing that the contrast had to stay in his system in order to be effective and every minute that went by the likelihood increased that he would pee it out. And the whole time this is happening, Liam is happily watching “Rudolph the Red Nosed Reindeer” like he has the three other times he has waited for a CT scan, on the purple-colored portable TV/DVD combo player. He was so relaxed, he actually fell asleep waiting to get his picture taken. And then it was his turn. I carried him into the room with the camera, he was fascinated with it. I explained that he would lie down on a table and go through the hole in the middle and it would take a picture of his whole body. He was even more fascinated. And then I showed him the room filled with people who were going to look at his picture. And then the anesthesiologist injected medicine into one of his tubies and he fell asleep within seconds in my arms. And I could finally cry since Liam was asleep. I placed his body carefully on the scan bed, kissed him, put one of his puppies in his hand, and reminded the nurse to put Bacitracin on his central line when she changed his dressing. Leaving Liam in the hands of others is one of the things I find extremely difficult. It always makes me cry. But today before I left the room, I said a quick prayer to the machine. As soon as the test was over, he was wheeled out on a pink crib-sized hospital bed into the hallway. We helped him to wake up and he immediately wanted to know where the camera was. He doesn’t understand the concept of losing time from anesthesia and at this point, doesn’t know he has been asleep.
So much for the CT, now onto nuclear medicine to get the injection needed for the MIBG scan. We checked in, waited, and then noticed some fine print on one of the many pieces of paper handed to us that said the SSKI drops needed to be in Liam three hours prior to the injection. He was supposed to receive the injection at 2:30. It was around noon. The timing might have worked if there wasn’t a CT scan delay, but now we missed our injection window. What infuriated me is that no one said anything to us about taking the SSKI drops PRIOR to the injection. What infuriated me even more was the snippy receptionist who called back to nuclear medicine to confirm. She said, “The parents didn’t give their kid the drops,” as if we were negligent parents who were trying to cause our son harm. Under normal circumstances, something like a snippy receptionist maybe wouldn’t get to me. Under these circumstances, I was seething. After I explained to her that no one told us he needed the medicine within a certain timeframe, that we didn’t intentionally screw up the timing, that there was a delay in the CT room, and that she might want to think about taking a different approach when dealing with parents of children who are going through this process and already stressed. She wouldn’t look at me again but the person who was working next to her took over, apologized for the frustration and miscommunication, and told us that we couldn’t get the injection for several hours so we might want to take a walk or go to the cafeteria. We went to the cafeteria so that Liam could begin to eat some of the foods listed in writing in scribble on the yellow Post-it now crumpled in Larry’s pocket. We started with French fries, orange juice, and frozen yogurt with chocolate chips. And then he threw up. In the cafeteria. One French fry at a time. And then he wanted more. And more. But they weren’t hot enough. So we had to go back to the grill area , ask for some fresh fries to be made even though there were fries already prepared waiting to be eaten, and hope that the person at the grill would honor Liam’s request. Fortunately, he did. And Liam ate hot French fries while sitting on the ledge of the grill counter where trays are usually pushed, watching the two grill cooks prepare food and asking them every step of the way what they were doing. Watching Liam eat is a beautiful sight.
Back to Nuclear Medicine. We were brought back to a room that Liam and I have been to before. So it wasn’t completely strange to him. But we weren’t in the same chair, so it was a little disconcerting. The injection is delivered in a metal tube in order to protect people handling it from the radioactive material. And again as a parent you’re left with the feeling of, “how can this be right – to inject radioactive material into my precious child?” After the injection, I took Liam into the room with the Scan machine. It’s a big room, but the scanner is even bigger. It takes up almost the entire room from floor to ceiling. And it has two panels that look like small solar panels that are suspended on either side of the bed. Liam explained to me that the bed goes through the hole to take his picture. And then we talked about the funny looking panels that looked like they moved around the bed. He wanted it to take a picture “right now.”
On Thursday morning we were back at nuclear medicine. As I carried Liam into the room, I was directed to a different area behind a linen storage closet where another MIBG scanner was located. Without the benefit of walls to frame the scanner, it looked even bigger and more intimidating. Any change in schedule throws Liam for a loop. He wasn’t prepared to be in a different area, but I showed him it was exactly the same machine. He was very quiet but he was OK. And then he was asleep in my arms. And again I was placing his anesthesia-limp body on a scanner bed and praying. As I was walking out of the room, his nurse asked us where we were going to meet him, a question that confused me since I’ve only met Liam in the same room when the test was over. Did something change? Were things different? “He’s having bone marrows done today,” said his nurse. “No – He’s not,” I said. And then started a “what are you talking about” conversation as Liam is asleep on the table. It’s challenging enough on a daily basis weaving a web of explanations and expectations for Liam to be comfortable of the situation he’s in. To have a surprise thrown at you that I can’t even explain to him because he’s already under anesthesia threatens is challenging. I absolutely hate leaving Liam in a room to be scanned. I hate leaving him. But I did to try to figure out what was going on. Guess what? Someone forgot to call us to tell us there was a change. Thanks for the notice.
After Liam woke up in another room with four bandages covering the spots where a needle was injected into his pelvis to draw bone marrow, he was a bit perplexed about where he was. And when he wanted to know why he had new bandages, I quickly explained that one of the things they needed to do when taking his picture was to take a little blood. And the bandages covered where they took the blood. He was fine. What he didn’t like was discovering a cup sealed to his private parts to collect his pee. It was initially covered with a diaper, but eventually he noticed a tube snaking out from his diaper which led to a whole discussion about what it was and what it was doing. And then what we thought was going to be a short day at the hospital turned into one very long day with urine collection, a blood transfusion (thank you donor), a platelet transfusion (thank you donor) and hours of urine collection. Liam took everything in stride. He was fine with every explanation, was familiar with the transfusion process, and took it all Liam-style…calm, cool and inquisitive. The end of the day was capped off trying to get him to pee. The cup made him nervous and he wouldn’t pee…even though he had been receiving fluids all day. He was so uncomfortable that he had to lie down. But he wouldn’t pee. We explained to him that we needed him to pee in order to leave. We told him it was really important. He made up a song about pee. The nurse increased the amount of fluid he was receiving to try and get things moving. He said he didn’t want to go. We took a walk. Half way to the fish tank, he started peeing and peeing and peeing. It was a good thing.
And now we wait. Today at 10:30 a.m. we have a meeting with Dr. Kushner to go over the test results.
Wednesday, June 13, 2007
Wednesday Morning - Thank You
I wanted to take a minute to personally thank the guys who organized, and for all of those who played in Liam's benefit hockey tournament this past weekend at Inman Sports Arena in NJ. Your thoughtfulness and generosity touched us deeply and we are once again humbled by the efforts of friends and strangers alike. We wish Liam would have been able to be present but his low white counts did not allow us to be out in public. Thank you to all of my teammates from the Heat and a special thanks to Inman arena for the use of their facility and coordination of the tournament.
Tuesday, June 12, 2007
Monday, June 11 2007
We didn’t quite escape neutropenia…but it was as minimal as possible and didn’t include a hospital stay. We’ll chalk it up as a “W” for Liam. On Friday he was neutropenic but today, after only two shots of the really expensive medicine that stimulates white blood cell production, he was out of the danger zone. He did, though, need platelets which are flowing into him as I’m typing courtesy of a donor. When we found out Liam needed platelets, I went into teacher mode and used it as an opportunity to educate my “big boy” (what Liam calls himself) about the stuff that looks like chicken soup. We had a long conversation about what platelets are, what they do, why he needed a transfusion of them, and how they would help him. In typical Liam fashion, when the nurse assigned to him came over to start the transfusion, he immediately said, “can I help?!” He wanted his own alcohol pads to clean the tube connections and talked his nurse through each step of what was happening. Listening to Liam makes me feel like I’m watching a budding sportscaster in training perfecting his color commentary style. Of course it’s never lost on me the gravity of the situation and how the things he is describing are all part of rescuing him from cancer. After he fell into a drug-induced sleep (all transfusions require a dose of medicine that make Liam fall asleep), I sat in the open area of the Day Hospital called “the beach” that comes without sand but a semi-circle collection of chairs. I was busy chipping away at the mound of e-mails in my inbox and at one point found myself struck by the fact that I could work with the sounds of screams of children of all ages and varying degress of urgency around me. I tried to count the number of screams I was hearing but it was impossible. Cancer isn’t pretty and neither, at times, is the treatment. It’s ugly, difficult, and definitely challenges even the most upbeat person to summon all strength to stay focused on your situation and not let the stress of other situations into your world. When Liam is sleeping is the only time we can let our guard down to show how we really feel. We don’t want Liam to see the exhaustion we’re feeling….and for that matter what right do we have to feel such exhaustion considering what he’s going through?
As Liam was sleeping, I looked at his little body with one long eyelash left, no eyebrows, and hair that looks a bit like a mad scientist’s and saw an amazing little boy. He’s too busy learning and loving to realize what’s happening. Over the weekend he completely surprised us by singing almost perfectly the alphabet (when did he memorize those 26 letters?!) and every word of “Three Blind Mice.” He also recited almost every number between 1 and 20, although not quite in the right order, as he was waiting for his food to warm up and kept a running commentary of how to cook macaroni and cheese. And, he had a crying fig when we wouldn’t give him a second shot of “G” on Sunday night. He was beside himself when we told him he could only get one shot.
Mondays always bring me back to the reality of our new world. It always hits me when I pass through the doors of Sloan-Kettering how I’m leaving one world and entering another. The easiest way to differentiate the two worlds is by the conversations. The snippets of conversation that everyone hears as you’re going about your life on the “outside” tend to relate to “he said/she said” discussions. The ones inside the hospital relate to saving lives. The conversations inside and outside are discussed with equal passion but not always the same amount of energy. There are times I’m walking to/from the hospital with Liam and hear a “he said/she said” conversation that makes me smile. And then there are times I get angry at the energy being wasted worrying about such trivial things. But most of the time I just drown it out and keep moving.
This is the big week. This is the really big week. This is the week that Liam’s 29-pound body is scanned from every angle and perspective possible to see how the five rounds of chemotherapy and delicate surgery have done in killing off and beating back the cancer cells. This is the week that if I could spend every minute in prayerful meditation chanting good health to Liam, I would. This is the week that we need every collective good thought, prayer, blessing, chant, mantra sent Liam’s way to work in conjunction with medicine to turn the tide. Our incredibly brave and valiant Prince is undergoing a CT scan on Wednesday, an MIBG scan on Thursday and bone marrow tests on Friday. The information collected from these three tests will give us the most definitive picture of how he is doing. He’ll either get the green light to begin 3F8 treatments the week of June 25th or he’ll need a 6th round of chemo. It’s going to be a hard week with lots of anesthesia, cajoling to convince him to drink the icky contrast fluid needed for a CT scan, explanations for Liam about what’s happening, and pain from the sites in his pelvis where a needle is inserted to collect bone marrow. It’s going to be a lot of holding and comforting, but we’re ready. We’re ready to get him to the next stage of treatment. We’re ready for the induction phase of treatment to be completed. We’re ready to write to Dartmouth, the school I think I’m seeing in my dreams when I picture Liam walking across a field to collect his diploma, and tell them to be on the lookout for Liam’s application in 2021.
As Liam was sleeping, I looked at his little body with one long eyelash left, no eyebrows, and hair that looks a bit like a mad scientist’s and saw an amazing little boy. He’s too busy learning and loving to realize what’s happening. Over the weekend he completely surprised us by singing almost perfectly the alphabet (when did he memorize those 26 letters?!) and every word of “Three Blind Mice.” He also recited almost every number between 1 and 20, although not quite in the right order, as he was waiting for his food to warm up and kept a running commentary of how to cook macaroni and cheese. And, he had a crying fig when we wouldn’t give him a second shot of “G” on Sunday night. He was beside himself when we told him he could only get one shot.
Mondays always bring me back to the reality of our new world. It always hits me when I pass through the doors of Sloan-Kettering how I’m leaving one world and entering another. The easiest way to differentiate the two worlds is by the conversations. The snippets of conversation that everyone hears as you’re going about your life on the “outside” tend to relate to “he said/she said” discussions. The ones inside the hospital relate to saving lives. The conversations inside and outside are discussed with equal passion but not always the same amount of energy. There are times I’m walking to/from the hospital with Liam and hear a “he said/she said” conversation that makes me smile. And then there are times I get angry at the energy being wasted worrying about such trivial things. But most of the time I just drown it out and keep moving.
This is the big week. This is the really big week. This is the week that Liam’s 29-pound body is scanned from every angle and perspective possible to see how the five rounds of chemotherapy and delicate surgery have done in killing off and beating back the cancer cells. This is the week that if I could spend every minute in prayerful meditation chanting good health to Liam, I would. This is the week that we need every collective good thought, prayer, blessing, chant, mantra sent Liam’s way to work in conjunction with medicine to turn the tide. Our incredibly brave and valiant Prince is undergoing a CT scan on Wednesday, an MIBG scan on Thursday and bone marrow tests on Friday. The information collected from these three tests will give us the most definitive picture of how he is doing. He’ll either get the green light to begin 3F8 treatments the week of June 25th or he’ll need a 6th round of chemo. It’s going to be a hard week with lots of anesthesia, cajoling to convince him to drink the icky contrast fluid needed for a CT scan, explanations for Liam about what’s happening, and pain from the sites in his pelvis where a needle is inserted to collect bone marrow. It’s going to be a lot of holding and comforting, but we’re ready. We’re ready to get him to the next stage of treatment. We’re ready for the induction phase of treatment to be completed. We’re ready to write to Dartmouth, the school I think I’m seeing in my dreams when I picture Liam walking across a field to collect his diploma, and tell them to be on the lookout for Liam’s application in 2021.
Friday, June 8, 2007
Update for Wednesday June 6th, 2007
I hate to admit it, but today was one of those tough days for me. My cup of frustration runneth over and the tears that I normally keep in check, flowed uncontrollably. As we waited to be seen in the IV Room for a CBC and dressing change, I held my tired son in my arms with my head resting on top of his and tears streaming down my face. I tried to stop them but just couldn’t. And the more I tried to stop them, the more they flowed. It was one of those crying sessions where there was no noise, just tears. It’s so hard to see Liam so skinny, so tired, so listless. It makes me feel helpless. He has been nauseous since Thursday night and now is nervous to eat. We just want the nausea to pass and have him regain his appetite so that we can fatten him up. He’s just not hungry and often when he does eat, it winds up coming right back up. I suppose the tears are also related to the stress that’s beginning to mount in anticipation of the tests on June 13, 14 and 15. And while I feel really good going into the tests, I am not looking forward to putting Liam through the process. But knowing my son and how well he accepts challenges, I should be more confident of how he will handle it.
Day 10 since the beginning of the 5th round of chemo and Liam is still not neutropenic. This might avoid neutropenia this round which would be so nice. Other than being extremely tired and nauseous, he’s doing very well. Before we left for the hospital this morning, Liam asked if there were going to be stickies (what he calls a dressing change). The first time he asked, I avoided answering the question. The next time he asked, I told him yes. When it came time for his dressing change today, he didn’t cry. He was amazing. He helped me and Nurse Kate put whisk (the stuff that loosens adhesive) on his bandages and stayed calm throughout the entire process. Nurse Kate couldn’t believe how calm and helpful Liam remained. (She has changed his dressing before under different circumstances.) Other nurses poked their heads in to look at Liam in disbelief at how calm he was. He talked Nurse Kate through the whole process and kept assuring her that the bandages were coming off. We stopped in to see one of the surgical team nurse practicioners to have her look at Liam’s surgery incision and in the room was Chester, the mannequin we practiced dressing changes on Monday. When Liam saw Chester, he said “Look Mommy – It’s Chester!” And then asked Chester how he was doing.
Today was prom day at the hospital. For the past few weeks there have been racks and racks of prom dresses in the play room and a buzz of excitement as patients, moms, nurses and other hospital employees try on dress after dress in search of the perfect one. As we waited in the IV Room, taffeta being worn by every walk of hospital life swished by. The prom was held from 10 – 1:30 and included all the trappings of a prom…DJ, photographer, vidoegrapher, snacks, favors like flashing rings, and lots of sweets. We weren’t going to go, it just wasn’t a day we felt like celebrating, but Liam wanted watermelon which is served in the cafeteria which is where the prom was held. We stopped in, saw Zachary and his mom who had been looking for us, and decided to stay for a bit. Liam wanted to see the DJ, his first time seeing a DJ, and decided that there was one person he wanted to dance with…Dr. Bovine, his favorite clown. Liam reached out his hands to the man who makes Liam’s eyes twinkle, and Dr. Bovine protectively held Liam in his arms and gingerly swung him around the dance floor. There was a lot of joy and happiness in the room, along with IV pumps and wheelchairs, but we were just too tired to really enjoy the festivities.
We swung by the fire station to see “the guys,” and of course Liam asked for the saws to be started. Thankfully, “the guys” haven’t reached their saturation point of demonstrating for the umpteenth time how the wood saw and metal saw works. He also asked for some “Fireman Chocolate Milk” which was personally mixed for him. He sat on the counter drinking chocolate milk out of big boy cup while watching his heroes.
To top off his day, we stopped by a construction site on the corner where our city home is located. A 54-floor building is under construction and Liam is fascinated with the backhoes, diggers, dump trucks and other pieces of big equipment at the site. To my surprise when we arrived at the site a few of the workers standing at the entrance gave Liam a friendly greeting. They recognized him from all the times we’ve stopped to look at the site on our way to catch a cab to the hospital. Wait – isn’t this the city that people can be forgotten in a New York Minute? Liam was in awe watching one of his favorite videos come to life in front of him.
We’ll be back at the hospital on Friday for another CBC. Our fingers are crossed that we’ll avoid neutropenia.
Day 10 since the beginning of the 5th round of chemo and Liam is still not neutropenic. This might avoid neutropenia this round which would be so nice. Other than being extremely tired and nauseous, he’s doing very well. Before we left for the hospital this morning, Liam asked if there were going to be stickies (what he calls a dressing change). The first time he asked, I avoided answering the question. The next time he asked, I told him yes. When it came time for his dressing change today, he didn’t cry. He was amazing. He helped me and Nurse Kate put whisk (the stuff that loosens adhesive) on his bandages and stayed calm throughout the entire process. Nurse Kate couldn’t believe how calm and helpful Liam remained. (She has changed his dressing before under different circumstances.) Other nurses poked their heads in to look at Liam in disbelief at how calm he was. He talked Nurse Kate through the whole process and kept assuring her that the bandages were coming off. We stopped in to see one of the surgical team nurse practicioners to have her look at Liam’s surgery incision and in the room was Chester, the mannequin we practiced dressing changes on Monday. When Liam saw Chester, he said “Look Mommy – It’s Chester!” And then asked Chester how he was doing.
Today was prom day at the hospital. For the past few weeks there have been racks and racks of prom dresses in the play room and a buzz of excitement as patients, moms, nurses and other hospital employees try on dress after dress in search of the perfect one. As we waited in the IV Room, taffeta being worn by every walk of hospital life swished by. The prom was held from 10 – 1:30 and included all the trappings of a prom…DJ, photographer, vidoegrapher, snacks, favors like flashing rings, and lots of sweets. We weren’t going to go, it just wasn’t a day we felt like celebrating, but Liam wanted watermelon which is served in the cafeteria which is where the prom was held. We stopped in, saw Zachary and his mom who had been looking for us, and decided to stay for a bit. Liam wanted to see the DJ, his first time seeing a DJ, and decided that there was one person he wanted to dance with…Dr. Bovine, his favorite clown. Liam reached out his hands to the man who makes Liam’s eyes twinkle, and Dr. Bovine protectively held Liam in his arms and gingerly swung him around the dance floor. There was a lot of joy and happiness in the room, along with IV pumps and wheelchairs, but we were just too tired to really enjoy the festivities.
We swung by the fire station to see “the guys,” and of course Liam asked for the saws to be started. Thankfully, “the guys” haven’t reached their saturation point of demonstrating for the umpteenth time how the wood saw and metal saw works. He also asked for some “Fireman Chocolate Milk” which was personally mixed for him. He sat on the counter drinking chocolate milk out of big boy cup while watching his heroes.
To top off his day, we stopped by a construction site on the corner where our city home is located. A 54-floor building is under construction and Liam is fascinated with the backhoes, diggers, dump trucks and other pieces of big equipment at the site. To my surprise when we arrived at the site a few of the workers standing at the entrance gave Liam a friendly greeting. They recognized him from all the times we’ve stopped to look at the site on our way to catch a cab to the hospital. Wait – isn’t this the city that people can be forgotten in a New York Minute? Liam was in awe watching one of his favorite videos come to life in front of him.
We’ll be back at the hospital on Friday for another CBC. Our fingers are crossed that we’ll avoid neutropenia.
Wednesday, June 6, 2007
June 4th, 2007 Weary
I recall learning somewhere along the way that a soldier’s tour of duty in Iraq used to be three months and the current lack of soldiers has required that tour to be extended to nine months. We’re now a little more than three months into our tour of duty with cancer, and having had no break since February 26th when our tour began, I can now firmly say that any soldier in Iraq or Afghanistan or wherever they might be stationed needs a break after three months. Every aspect of your body - physical to mental - is tired after three months of being on nonstop ready alert. Actually, tired is too kind of a word. Sheer exhaustion would be a better way to describe it, coupled with difficult to reconcile feelings and emotions.
We wrapped up round five of chemo late on Friday. Now we wait to see if it has any impact on his hearing. The nausea that comes with this cycle made its first appearance on Thursday evening, but only made one visit that night. (It could have been much worse – it could have begun as soon as the chemo started and been nonstop, like it was for another little friend of Liam’s who was on anti-nausea medication via his tubie 24/7 after the first night.) After an 8-hour day in the hospital on Friday, we were given the OK to go home to NJ for the weekend with fluids (meaning via IV) to avoid dehydration from nausea. In case you’re not familiar with how much fluids are needed to keep a 3-year old hydrated for a weekend, the backpack that had the bag of fluids and the pump that would deliver them felt like it weighed about 20 pounds when it was given to us on Friday. What that meant was that Liam couldn’t go anywhere without someone with him to carry his backpack of fluids. It reminds me of being in a communist country before the end of the Cold War…you always had to have a minder with you. Liam is now comfortable with the concept of being attached to something. He reminds us all the time, “Don’t forget my backpack!” He has been on fluids every night since Tuesday. On the weeknights, his fluids and pump are much lighter and he likes to pull the backpack along by one of the straps or dramatically announce his arrival by pushing the backpack ahead of him into a room. It’s amazing how quickly we’ve all adapted and become used to things we never would have thought we’d grow accustomed to. When Liam had one of his giant pees associated with being on fluids that flooded over the banks of his diaper and literally soaked my pants, how things have changed. In my old world I probably would have been upset to have pee-soaked legs. In this world, I barely noticed. Liam continues to be an inpiration. He doesn’t seem the least bit bothered by the fact that he’s connected to a tube and a pump and can’t go anywhere without them. He just takes it all in stride. He doesn’t ask the question of why he has to have them, but does ask why they pump. He’s more concerned about how they work than why they’re working for him. I dread when his mind has developed enough to ask questions why about cancer.
Liam was extremely tuckered out over the weekend. He’d have bursts of energy, but then want to take a nap. He was clearly happy to be home, but took being at home at a slow pace. After throwing up on Thursday and Friday, he was leery of food and what would happen if he ate. We managed to get him interested in some watermelon after showing him the wonders of a melon baller, but a few balls of watermelon are hardly what one would consider a nutritious meal. He has a new creative excuse to avoid food. When we would offer him something, he would look at us and say in a very pathetic sounding voice, “I’m really tired,” to avoid having to eat. After a round of nausea on Sunday, we had a conversation with him about how one of the medicines that was given to him is making his tummy upset but that it would go away soon and we didn’t want him to think that every time he ate he would get sick. He seemed liked he comprehended what we were saying. He also barely seemed to mind when he got sick on Sunday evening. He looked at Larry, told him he was going to throw up, gave Larry enough time to get something to collect the deposit, and then threw up. When he’s super tired like he has been, it adds another layer of stress on our lives. Without acknowledging it, we both worry that he’s not going to come out of the tired zone. Seeing him so lethargic and listless is really hard. Of course we know why he’s tired and logically understand, but the emotional side has a hard time seeing him not outside playing.
Liam refused to take the anti-nausea pills, even though they dissolve on contact with his tongue. We tried them and they have a pretty nasty aftertaste, so we can’t blame him. At some point Larry had a stroke of genius to hide the pill inside one of the large Disney-character straws we picked up somewhere along the way. Liam sucked on the straw without realizing he was taking the pill. It worked beautifully all weekend and every time Liam unknowingly took his pill, I would tell Larry he was a genius.
It’s amazing to me the silent communication system Larry and I have developed while keeping our voices perfectly “normal” in front of our children in order to not give ourselves away. Often we find ourselves having a conversation with our eyes about getting Liam to eat or drink more without disturbing the flow of communication we’re having with him. It’s very funny some of the ways you wind up adapting to meet the needs of a situation. Raised eyebrows, furtive glances, and quick gestures are a part of our routine.
By the end of the weekend, Liam was ready to go back to his “city home.” He kept asking to go back “right now.” We’re not sure why. I think it’s because he likes to see everything that he sees when he’s in the city. Larry thinks it’s because he likes the couch that has become his favorite resting place.
All weekend Liam kept talking about how he’s a big boy now and can do big boy things. On Sunday he decided he wanted to drink milk…plain milk…not chocolate milk…out of a cup without a top or a straw. He kept telling his daddy, “I’m a big boy now” to explain why he was drinking out of cup. We just smiled at him and agreed that he’s a big boy, a very big boy.
Monday was another all-day event at the hospital. It was supposed to be a short day: an echocardiogram at 10 followed by a CBC for blood counts and quick check up. I should have known it wasn’t going to be an easy day when I saw it was pouring outside. We had a cab driver who didn’t want to get out of his cab to help with the stroller and instead watched from the front seat as I struggled to get Liam, his backpack of fluids and pump, and his bag of puppies and pillow in the cab. Liam was crying by the time I got in the cab because he was covered in rain. He is paranoid about getting wet because he knows if the dressing covering his line gets wet he’ll need a dreaded dressing change. I calmed him down on the way to the hospital by pointing out all the colorful umbrellas we saw along the way.
I’ve been through a few echocardiograms with Liam and thought I knew what to expect. I hadn’t been through an echo at Sloan yet. I thought it would take about 10 minutes, like the ones in the past. This one took about 30 minutes and included 37 pictures of various aspects of Liam’s heart. I had to work very hard to keep the alarm out of my voice as I lied next to Liam in the bed trying to keep him calm and comforted. He just lied there with tears streaming down his face asking, “All done?” over and over. He has a new quirk – whenever he cries, he says, “My tears! My tears!” which is the que to wipe the tears away from his face. He hates the feeling of tears streaming down his face. I don’t know why, it’s just a new thing for him. So I used his puppies to wipe his tears away as he lied there watching Dora the Explorer on the TV in the room. I’ve learned to not ask a technician if there’s anything wrong. They’re not going to tell you, so why bother. I also kept trying to put my mind in the right place, “she’s taking a lot of pictures to be extra thorough…which is a good thing.” But I was having a hard time convincing myself. I wanted to grab Liam from the bed and say, “OK – We’re finished for now - thanks” and run away as fast as I could. Tests are opportunities to get news you might not want to hear so if you don’t get one, that means you can’t get bad news…right? (I never claimed to be completely rational these days.)
We finished with his echo test and then went to the IV room for his CBC test. We were directed to the bed area for the CBC – not a good thing. After an hour wait, we finally got the CBC test (this is the short one that takes three minutes), and then were directed to room five beyond the orange door to see Ursula. After the typical round of questions, we got the news he needed blood which, since it was now after noon, dashed away any hopes of a quick day at the hospital. We didn’t have a room or a bed, so we camped on one of the loveseat-size couches in the waiting area. When a little boy became upset near us, Liam whispered to me, “Mommy – does he have a stinky diaper?” I told him yes. After a long wait for blood, and then pre-meds, and then the transfusion, and then the flush, we were finally done. But not before a dreaded dressing change. I’m not quite sure why, but for the very first time, Liam barely cried during the dressing change. Maybe it was three times we did a dressing change on Chester, the life-size mannequin equipped with broviac, insuflon, and medport that is there for parents and patients to practice that made Liam more comfortable. Liam guided me through every step of the dressing change as we did it over and over again on Chester. I don’t know what it was, but it was so nice to not have Liam screaming, kicking and crying when we changed his dressing. Our short day at the hospital wound up being an eight hour day. But, at least at the end of it we weren’t coming home with fluids and were coming home.
We’re back on Wednesday for a CBC and possible blood transfusion.
Three quick sidebar stories:
Liam is so inquisitive about every thing, is fully engrossed in the word why. His passion is anything mechanical and he shows equal interest in all…from the sophisticated piece of medical equipment that evaluates his blood to the trash compactor that makes large bags very small. Gabriel continues to be an angel every time we see him and spent a considerable amount of time explaining every feature of the trash compactor during our last in patient visit. Liam hung on Gabriel’s every word and now recites all the features of the trash compactor like a dissertation, except in a sweet sing-song voice.
Last week Liam started saying to us very emphatically, “No – I’m not fine!” or, “No – I’m not OK.” when we would ask him how he was. It’s the first time he’s used those phrases.
The support we continue to receive is a huge boost to us. This is a long journey and while it’s a very personal battle for us, we’re amazed that so many others have become a part of the team and continue to be involved. We thought that by now people would have grown weary of keeping us going and that our plight would be forgotten. Every time we see a new message on Liam’s blog, receive a card or package, enjoy a meal lovingly prepared and delivered to us, we know that’s not the case. Cancer at this stage, with the risk of infections, is a very lonely time. It’s easy to feel like you’re fighting a battle by yourself. We’re so appreciative of the support we’ve had.
Friday, June 1, 2007
Friday, June 1st
We haven’t written an update in a littler over a week. Every day continues to be a whirlwind and our situation, while one we’re becoming more comfortable with, is still very fluid and tenuous. It’s very hard to make any plans beyond the immediate. Today is Friday, June 1st. It will be our last day of round five of chemo, which hopefully will be the last. We didn’t quite escape hospitalization after round four, but we came very close.
Last Wednesday we came to the hospital for what we thought would be a quick trip – just a CBC - to see if Liam’s bone marrow had generated enough ANC blood cells (the white ones that do the fighting against germs) to declare him non-neutropenic. After a long wait…make that a very, very, very, long wait…we got the news that not only was he still neutropenic but he also needed both a blood and platelet transfusion. What we hoped would be a quick trip with Uncle Brad in tow, turned into an eight hour day. As we waited for the blood and platelets to arrive, another 1 ½ wait, the Child Life folks finally had the birthday party for Liam they had been waiting to have since his birthday. We kept delaying it based on his mood, but he seemed like it was something he would welcome. When Liam arrived in the play room for a “surprise,” he was excited just to see his adored clowns. When he realized the clowns were there to sing happy birthday to him along with about 20 other parents and children, he smiled the biggest smile I’ve seen on his face since his surgery. As the words to Happy Birthday rang out, he looked at the crowd of people singing just for him and then buried his face in my shoulder. At first I was nervous that the crowd and singing was too much for him, but he was loving it…just a bit shy. A birthday celebration on the 9th floor of Sloan-Kettering truly is a big deal and the voices singing were hearty and hopeful. After a round of pictures with the clowns, in which Liam actually smiled (and taken with a Polaroid because of privacy laws which means we can’t share them on the blog), Liam and Uncle Brad got busy ripping the Bob the Builder wrapping paper off the presents a volunteer for Child Life picked out for him. I was hopeful he’d eat some of the ice cream cake, but he had nothing to do with it. He kept telling me, “not now Mommy, later.”
We went back to our bed and waited for the blood and take a nap. Transfusions require not only a lot of time (they’re given separately to monitor for a reaction), but also a lot of temperature readings. One of the early temperature readings during the blood transfusion was 38.2 (38, or 100.4, is a temperature). The nursing assistant immediately called Nurse Emily. She retook his temperature and got 37.8. After a debate about whether it was a rogue reading, we decided to wait a bit. I knew that a temperature during neutropenia was an instant ticket back into Hotel Sloan. He didn’t have another high temperature reading the rest of the day. But the talk was shifting from “see you tomorrow” to “you’ll be spending the night.” We desperately didn’t want to see Liam back in the hospital. Not now. Not when he was making so much progress coming out of his post-surgery/post-chemo funk. I pled Liam’s case first to the nurse practioner and then to one of the doctors on the team. I really felt confident that Liam was fine and that it was just a matter of a different style in taking Liam’s temperature. (Emily held his ear out when she took it, the nursing assistant didn’t…couldn’t that have made the difference? I know when I use an ear thermometer, I rarely get the same reading twice.) I promised to take his temperature every 20 minutes during the night. I promised to stay up all night to watch him to make sure he was OK, if that meant staying out of the hospital. And then the sobering dose of reality came as Dr. Kramer told me that kids have been lost in less than 20 minutes during neutropenia because infections can take a hold of children so fast that even a short cab ride to the hospital isn’t enough time. OK. Let’s not go there, please. After a change in the antibiotic ordered for him from the one that can cause hearing loss (one of the things I’ve learned to ask about along the way) and one last blood test to see if his ANCs possibly had rebounded enough since the morning test to avoid the hospital stay (they hadn’t but they had climbed), we went over to M-9 in the red wagon that is his protective cocoon. Liam’s spirits were pretty good. He accepted the explanation that his temperature was high – he understands that a high temperature isn’t good – and seemed resigned to the fact that he was spending the night in the hospital. Now, here’s what amazes me. He asked if we were going to see Lindsey, one of his primary nurses on the in-patient side. He has figured out that Lindsey isn’t in the day hospital and that he only sees her when he’s staying overnight. And then he talked about peeing in a cup, the memorable activity he did with Lindsey the week of his surgery. He retold the story in his sing-song voice the way he remembered it and kept repeating it. Thank goodness Lindsey was working and greeted Liam with a huge, “Hello Handsome.” As much as we don’t like to be in-patient, it was comfortingly nice to see Lindsey. Daddy brought a suitcase with jammies, Cinnamon Graham Crackers and a loaf of whole wheat bread (Liam’s latest food obsessions – he carries a box and a Zip Lock bag of graham crackers everywhere with him and, when the mood strikes, eats up to 10 pieces of bread in a sitting), Magic Juice, more of Liam’s favorite soft blankies, and the Fisher Price birdie machine that lulls him to sleep, and our diapers (the hospital ones are horrible). Liam was upset after Daddy and Uncle B left and kept asking where they were going and if they were coming back. And then we went for a wagon ride. Being in-patient means putting your blinders on and trying not to see and hear what is going on around you. But it’s hard to not catch pieces of conversations, hear crying, or see sights you just don’t want to.
The good news is after a night of nothing growing in his blood cultures, no more high temperatures, and an ANC level that made him non-neutropenic, we were released on Thursday afternoon. It was a 20 hour stay…not bad. The first activity Liam wanted to do after we got home was to go to the fire house…pushing his Tonka dump truck all the way, even across the street. As I caught glimpses of smiles as strangers saw this act of childhood innocence taking place in the busy streets of New York City, I wished they knew what they really were seeing and what a huge accomplishment it was. And of course when we arrived at the fire house, Liam was greeted as one of the guys. Larry met us at the station and Liam, for the first time, wanted to put on his fire jacket, pants, and helmet. When we were in the process of getting on his gear, a call came in for then engine truck. Liam kept trying to get the clothing on as fast as he could while yelling, “wait for me, guys, wait for me!” He went running over to the truck as it was pulling out, and was so sad to see it leave without him. He said in his sweet voice, “firemen – be safe. Come back soon.”
We were back at the hospital on Friday morning for a CBC. After a nearly two hour wait for the blood to be drawn, we found out Liam needed blood and platelets again. We were told this round of transfusions used up his direct-to-donor blood and platelet inventory. It was another long day at the hospital, but this time without any high temperatures. We were cleared to go home to NJ with instructions to report back at 7:30 a.m. Tuesday for round five of chemo. We stopped at the Fire House on the way home. They asked him if he wanted something to drink. He asked for chocolate milk. They made him some in one of their large cups. He sat on the kitchen counter and drank two glasses of chocolate milk while hanging out with “his guys.” After he drank the second cup he said, “can we go home now?” It was nice to be able to tell him yes, we could.
A short rant: After the unanticipated overnight stay from Wednesday to Thursday, an overly long wait for a quick test that can be done in less than three minutes was not what was needed. The balancing act comes in trying to mask frustration from your child in order to keep their spirits up while trying to calmly answer the question repeatedly asked over and over and over again, “can we go home right now?” We’ve decided that Sloan-Kettering needs a sound-proof frustration room for parents. It has to be a place where parents can go to release tension out of sight and sound of their children. What I wouldn’t have done for a good scream and punch at a punching bag to get out my frustration on Friday. I see names of people all over the hospital noting donations that have made new rooms, wings, and buildings possible. Maybe we’ll have the Gretchen and Larry Witt Frustration Release Room, complete with sound-proof padded walls, punching bag, and things to kick. I don’t think there is one parent who wouldn’t want to go there at least once.
Memorial Day Weekend was spent in NJ playing “store” outside with Grandma, visits from Grandpa, time on the swing set with Uncle Ian and his girlfriend Megan who were in town from Colorado, painting outside, coloring the driveway with chalk, blowing bubbles, playing with a wind-up dog that he said should be his dog in his “city home,” fishing with his uncles, helping Grandma cook, watching the frogs in the frog pond, helping to plant vegetables in the garden, watching and learning about thunder and lightening, and pulling the child-size piece of luggage decorated with Curious George, a gift waiting for him when we arrived home, everywhere. He would not let the piece of luggage out of his sight and named it his “George the Monkey stroller.” And when he discovered there was a side pocket to store a cup of Magic Juice, there was a whole new level of adoration. It went to the grocery store, shopping at Costco, all over the yard, to the swing set, to bed, up stairs, down stairs, everywhere. Who knew that a piece of luggage with wheels would be such a motivator to walk? It was exactly what Liam needed to do to help regain his strength and once-again, it’s our support network that comes through with a gift that we never thought of but was perfect. One morning when we were home, Liam woke up at 6:30 and insisted on getting dressed and going outside. Outside we went. And guess what he discovered? That grass is wet with dew early in the morning. He found it fascinating. And after his early morning walk with his George the Monkey stroller, he came inside and went back to sleep. Over the weekend he started doing some of his mannerisms that he hasn’t done since early May. One of my personal favorites is when he responds to a question by tilting his head, putting his pointer finger in his cheek, and saying with a deliberate pause between the first and second word, “Um, Sure!” Oh, and another favorite is when he says, “Ohhhh – I know” as he’s trying to figure something out. He says it to himself all the time and it’s adorable. It’s bittersweet for us being home. As wonderful of a time as we were having, we knew it was only hours until he would be back on the chemo grind with the round that could cause hearing loss. It’s hard to constantly stay in the present and not think ahead…but it’s what we have to do. Today is today and who knows what tomorrow will hold.
Round five of chemo has been uneventful so far. Long days and long nights getting up every 1 ½ hours to change his diaper. George the Monkey stroller comes along stuffed with puppies and Liam’s toy of the day. He’s comfortable with the routine and the rhythm of the hospital. He’s excited to see his blue IV pump every morning. Yes, he gets excited to see an IV pump. (Anything mechanical is exciting for Liam.) He has a new routine at the hospital– personally delivering the tube of his blood to the blood lab and watching his blood being processed. He says, “ooohhh” as he sees the blood being drawn from the test tube through a little tube and then watches as it moves through the machine. I was told he’s the only child who personally delivers his blood. His innocence at what he’s seeing is sometimes painful. To make hospital time interesting, we try to use every opportunity to engage him. Every day he amazes us by pulling something from his memory bank we either didn’t know he knew or didn’t think he remembered and applying it. A month or so ago he saw the water tower across the street leaking. This week we’ve all been hit hard with allergies – lots of runny eyes and noses. Liam said his eyes were “leaking like water towers.” For the first time since surgery, he gleefully greeted Jessie and her mom with a genuine Liam smile which was so nice to see. The clowns continue to be his buddies. He loves to see them and this week started to joke with them. One of the clowns pretends he falls asleep when he plays a little music box. Liam started pretending to fall asleep too. The nighttime routine is making macaroni and cheese, hanging out with Daddy, and keeping Ella away from the George the Monkey stroller. He keeps asking to “take a little walk outside” at night so that he can take his George the Monkey stroller. Tuesday night was a walk around the entire block, stopping at almost every door to ask who lives there. Wednesday night was a walk to the fire station. One of “his guys” gave him the Elmo Visits the Fire House DVD. When we got home, he watched it over and over and over again. It went to the hospital on Thursday to be watched. Thursday night we met Daddy and Ella in Central Park for a stroll. He enjoyed looking at the large water fountain and took his George the Monkey stroller for a walk along the fountain. A family in the room next to Liam’s in the day hospital received some difficult news today. I hated seeing the look on the parent’s faces, a look I now know all too well. This round of chemo causes nausea. Until tonight, he hadn’t thrown up. Hopefully he’ll be spared from that side effect being too difficult. Now we wait for his counts to drop and get through neutropenia. I feel the need to be extra super vigilant about exposure to people and germs. I wonder if I can seal off the apartment and pipe in sterile air?
June 13 – 15 are big days for Liam. They are the days he is having a CT scan, MIBG scan and bone marrow tests to see how his body has responded to chemo. I’m hoping for a “wow – there’s nothing left” report. Based on the test results, he might need a sixth round of chemo. We hope not. If all is good, he moves to 3F8 treatments the last week of June. He’ll have radiation on his leg after the first round of 3F8, another source of nervous anticipation. But those days are an eternity away. First we need to get through his fifth round of neutropenia which will set in probably late next week.
Last Wednesday we came to the hospital for what we thought would be a quick trip – just a CBC - to see if Liam’s bone marrow had generated enough ANC blood cells (the white ones that do the fighting against germs) to declare him non-neutropenic. After a long wait…make that a very, very, very, long wait…we got the news that not only was he still neutropenic but he also needed both a blood and platelet transfusion. What we hoped would be a quick trip with Uncle Brad in tow, turned into an eight hour day. As we waited for the blood and platelets to arrive, another 1 ½ wait, the Child Life folks finally had the birthday party for Liam they had been waiting to have since his birthday. We kept delaying it based on his mood, but he seemed like it was something he would welcome. When Liam arrived in the play room for a “surprise,” he was excited just to see his adored clowns. When he realized the clowns were there to sing happy birthday to him along with about 20 other parents and children, he smiled the biggest smile I’ve seen on his face since his surgery. As the words to Happy Birthday rang out, he looked at the crowd of people singing just for him and then buried his face in my shoulder. At first I was nervous that the crowd and singing was too much for him, but he was loving it…just a bit shy. A birthday celebration on the 9th floor of Sloan-Kettering truly is a big deal and the voices singing were hearty and hopeful. After a round of pictures with the clowns, in which Liam actually smiled (and taken with a Polaroid because of privacy laws which means we can’t share them on the blog), Liam and Uncle Brad got busy ripping the Bob the Builder wrapping paper off the presents a volunteer for Child Life picked out for him. I was hopeful he’d eat some of the ice cream cake, but he had nothing to do with it. He kept telling me, “not now Mommy, later.”
We went back to our bed and waited for the blood and take a nap. Transfusions require not only a lot of time (they’re given separately to monitor for a reaction), but also a lot of temperature readings. One of the early temperature readings during the blood transfusion was 38.2 (38, or 100.4, is a temperature). The nursing assistant immediately called Nurse Emily. She retook his temperature and got 37.8. After a debate about whether it was a rogue reading, we decided to wait a bit. I knew that a temperature during neutropenia was an instant ticket back into Hotel Sloan. He didn’t have another high temperature reading the rest of the day. But the talk was shifting from “see you tomorrow” to “you’ll be spending the night.” We desperately didn’t want to see Liam back in the hospital. Not now. Not when he was making so much progress coming out of his post-surgery/post-chemo funk. I pled Liam’s case first to the nurse practioner and then to one of the doctors on the team. I really felt confident that Liam was fine and that it was just a matter of a different style in taking Liam’s temperature. (Emily held his ear out when she took it, the nursing assistant didn’t…couldn’t that have made the difference? I know when I use an ear thermometer, I rarely get the same reading twice.) I promised to take his temperature every 20 minutes during the night. I promised to stay up all night to watch him to make sure he was OK, if that meant staying out of the hospital. And then the sobering dose of reality came as Dr. Kramer told me that kids have been lost in less than 20 minutes during neutropenia because infections can take a hold of children so fast that even a short cab ride to the hospital isn’t enough time. OK. Let’s not go there, please. After a change in the antibiotic ordered for him from the one that can cause hearing loss (one of the things I’ve learned to ask about along the way) and one last blood test to see if his ANCs possibly had rebounded enough since the morning test to avoid the hospital stay (they hadn’t but they had climbed), we went over to M-9 in the red wagon that is his protective cocoon. Liam’s spirits were pretty good. He accepted the explanation that his temperature was high – he understands that a high temperature isn’t good – and seemed resigned to the fact that he was spending the night in the hospital. Now, here’s what amazes me. He asked if we were going to see Lindsey, one of his primary nurses on the in-patient side. He has figured out that Lindsey isn’t in the day hospital and that he only sees her when he’s staying overnight. And then he talked about peeing in a cup, the memorable activity he did with Lindsey the week of his surgery. He retold the story in his sing-song voice the way he remembered it and kept repeating it. Thank goodness Lindsey was working and greeted Liam with a huge, “Hello Handsome.” As much as we don’t like to be in-patient, it was comfortingly nice to see Lindsey. Daddy brought a suitcase with jammies, Cinnamon Graham Crackers and a loaf of whole wheat bread (Liam’s latest food obsessions – he carries a box and a Zip Lock bag of graham crackers everywhere with him and, when the mood strikes, eats up to 10 pieces of bread in a sitting), Magic Juice, more of Liam’s favorite soft blankies, and the Fisher Price birdie machine that lulls him to sleep, and our diapers (the hospital ones are horrible). Liam was upset after Daddy and Uncle B left and kept asking where they were going and if they were coming back. And then we went for a wagon ride. Being in-patient means putting your blinders on and trying not to see and hear what is going on around you. But it’s hard to not catch pieces of conversations, hear crying, or see sights you just don’t want to.
The good news is after a night of nothing growing in his blood cultures, no more high temperatures, and an ANC level that made him non-neutropenic, we were released on Thursday afternoon. It was a 20 hour stay…not bad. The first activity Liam wanted to do after we got home was to go to the fire house…pushing his Tonka dump truck all the way, even across the street. As I caught glimpses of smiles as strangers saw this act of childhood innocence taking place in the busy streets of New York City, I wished they knew what they really were seeing and what a huge accomplishment it was. And of course when we arrived at the fire house, Liam was greeted as one of the guys. Larry met us at the station and Liam, for the first time, wanted to put on his fire jacket, pants, and helmet. When we were in the process of getting on his gear, a call came in for then engine truck. Liam kept trying to get the clothing on as fast as he could while yelling, “wait for me, guys, wait for me!” He went running over to the truck as it was pulling out, and was so sad to see it leave without him. He said in his sweet voice, “firemen – be safe. Come back soon.”
We were back at the hospital on Friday morning for a CBC. After a nearly two hour wait for the blood to be drawn, we found out Liam needed blood and platelets again. We were told this round of transfusions used up his direct-to-donor blood and platelet inventory. It was another long day at the hospital, but this time without any high temperatures. We were cleared to go home to NJ with instructions to report back at 7:30 a.m. Tuesday for round five of chemo. We stopped at the Fire House on the way home. They asked him if he wanted something to drink. He asked for chocolate milk. They made him some in one of their large cups. He sat on the kitchen counter and drank two glasses of chocolate milk while hanging out with “his guys.” After he drank the second cup he said, “can we go home now?” It was nice to be able to tell him yes, we could.
A short rant: After the unanticipated overnight stay from Wednesday to Thursday, an overly long wait for a quick test that can be done in less than three minutes was not what was needed. The balancing act comes in trying to mask frustration from your child in order to keep their spirits up while trying to calmly answer the question repeatedly asked over and over and over again, “can we go home right now?” We’ve decided that Sloan-Kettering needs a sound-proof frustration room for parents. It has to be a place where parents can go to release tension out of sight and sound of their children. What I wouldn’t have done for a good scream and punch at a punching bag to get out my frustration on Friday. I see names of people all over the hospital noting donations that have made new rooms, wings, and buildings possible. Maybe we’ll have the Gretchen and Larry Witt Frustration Release Room, complete with sound-proof padded walls, punching bag, and things to kick. I don’t think there is one parent who wouldn’t want to go there at least once.
Memorial Day Weekend was spent in NJ playing “store” outside with Grandma, visits from Grandpa, time on the swing set with Uncle Ian and his girlfriend Megan who were in town from Colorado, painting outside, coloring the driveway with chalk, blowing bubbles, playing with a wind-up dog that he said should be his dog in his “city home,” fishing with his uncles, helping Grandma cook, watching the frogs in the frog pond, helping to plant vegetables in the garden, watching and learning about thunder and lightening, and pulling the child-size piece of luggage decorated with Curious George, a gift waiting for him when we arrived home, everywhere. He would not let the piece of luggage out of his sight and named it his “George the Monkey stroller.” And when he discovered there was a side pocket to store a cup of Magic Juice, there was a whole new level of adoration. It went to the grocery store, shopping at Costco, all over the yard, to the swing set, to bed, up stairs, down stairs, everywhere. Who knew that a piece of luggage with wheels would be such a motivator to walk? It was exactly what Liam needed to do to help regain his strength and once-again, it’s our support network that comes through with a gift that we never thought of but was perfect. One morning when we were home, Liam woke up at 6:30 and insisted on getting dressed and going outside. Outside we went. And guess what he discovered? That grass is wet with dew early in the morning. He found it fascinating. And after his early morning walk with his George the Monkey stroller, he came inside and went back to sleep. Over the weekend he started doing some of his mannerisms that he hasn’t done since early May. One of my personal favorites is when he responds to a question by tilting his head, putting his pointer finger in his cheek, and saying with a deliberate pause between the first and second word, “Um, Sure!” Oh, and another favorite is when he says, “Ohhhh – I know” as he’s trying to figure something out. He says it to himself all the time and it’s adorable. It’s bittersweet for us being home. As wonderful of a time as we were having, we knew it was only hours until he would be back on the chemo grind with the round that could cause hearing loss. It’s hard to constantly stay in the present and not think ahead…but it’s what we have to do. Today is today and who knows what tomorrow will hold.
Round five of chemo has been uneventful so far. Long days and long nights getting up every 1 ½ hours to change his diaper. George the Monkey stroller comes along stuffed with puppies and Liam’s toy of the day. He’s comfortable with the routine and the rhythm of the hospital. He’s excited to see his blue IV pump every morning. Yes, he gets excited to see an IV pump. (Anything mechanical is exciting for Liam.) He has a new routine at the hospital– personally delivering the tube of his blood to the blood lab and watching his blood being processed. He says, “ooohhh” as he sees the blood being drawn from the test tube through a little tube and then watches as it moves through the machine. I was told he’s the only child who personally delivers his blood. His innocence at what he’s seeing is sometimes painful. To make hospital time interesting, we try to use every opportunity to engage him. Every day he amazes us by pulling something from his memory bank we either didn’t know he knew or didn’t think he remembered and applying it. A month or so ago he saw the water tower across the street leaking. This week we’ve all been hit hard with allergies – lots of runny eyes and noses. Liam said his eyes were “leaking like water towers.” For the first time since surgery, he gleefully greeted Jessie and her mom with a genuine Liam smile which was so nice to see. The clowns continue to be his buddies. He loves to see them and this week started to joke with them. One of the clowns pretends he falls asleep when he plays a little music box. Liam started pretending to fall asleep too. The nighttime routine is making macaroni and cheese, hanging out with Daddy, and keeping Ella away from the George the Monkey stroller. He keeps asking to “take a little walk outside” at night so that he can take his George the Monkey stroller. Tuesday night was a walk around the entire block, stopping at almost every door to ask who lives there. Wednesday night was a walk to the fire station. One of “his guys” gave him the Elmo Visits the Fire House DVD. When we got home, he watched it over and over and over again. It went to the hospital on Thursday to be watched. Thursday night we met Daddy and Ella in Central Park for a stroll. He enjoyed looking at the large water fountain and took his George the Monkey stroller for a walk along the fountain. A family in the room next to Liam’s in the day hospital received some difficult news today. I hated seeing the look on the parent’s faces, a look I now know all too well. This round of chemo causes nausea. Until tonight, he hadn’t thrown up. Hopefully he’ll be spared from that side effect being too difficult. Now we wait for his counts to drop and get through neutropenia. I feel the need to be extra super vigilant about exposure to people and germs. I wonder if I can seal off the apartment and pipe in sterile air?
June 13 – 15 are big days for Liam. They are the days he is having a CT scan, MIBG scan and bone marrow tests to see how his body has responded to chemo. I’m hoping for a “wow – there’s nothing left” report. Based on the test results, he might need a sixth round of chemo. We hope not. If all is good, he moves to 3F8 treatments the last week of June. He’ll have radiation on his leg after the first round of 3F8, another source of nervous anticipation. But those days are an eternity away. First we need to get through his fifth round of neutropenia which will set in probably late next week.
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