Monday, January 21, 2008
A day in the life of Liam
Thankfully, most of his days aren't like this. Thankfully, most of his days are spent doing what a child his age should be doing. Thankfully it's only every eight weeks we have to go through weeks like the pictures in the attached link from the February issue of Parents magazine show. We're doing everything we can to raise awareness of the need for more research money to be directed toward pediatric cancer. Losing more children just isn't an option when there's something that can be done. Parents Magazine
Friday, January 18, 2008
Stress and the Return of Super Soft Yellow Blankie
It’s 12:57 a.m. Day four of a week of antibody treatment, day 10 of 10 stressful days in a row. OK. I’ll admit…sometimes this is tough. There, I said it. OK…I’ll add to it…sometimes it’s really tough. The stress of trying to act normal in front of your child in a completely abnormal world; the stress of waiting for test results; the stress of keeping up with work; the stress of not letting anything fall through the cracks from grocery shopping to bill paying; the stress of watching your child writhe in pain during antibody treatment even though you know that treatment is helping him; the stress of having to hold him down to get a painful injection while he’s screaming at you and fighting with every ounce of energy to not hold him down (DON’T HOLD MY ARMS!!! DON’T HOLD MY LEGS!!!! STOPPPPPPP!!!!! NOOOOOOO!!!!!); the stress of hearing about other children who are not doing well; the stress of not feeling like you’re doing enough, fast enough to help find a cure; the stress of having to tell the cab driver almost every day to pull over RIGHT NOW so that I can let my son throw up with his head hanging out the door while cars are angrily honking behind you; the stress of figuring out when the best time is to give him a flu shot during a week of lots of shots; the stress of not being there for my daughter whose 2nd birthday is this weekend and no party has been planned; the stress of sitting with Liam through a follow-up hearing test to see if chemo caused any damage and finding out he has mild to moderate high frequency hearing loss; the stress of wondering why a person you don’t really know that well but who you know is aware of your situation literally turns her back on you every time she sees you making you wonder what you did to cause such a reaction; the stress of hearing and seeing other people’s pain who are dealing with cancer but not letting Liam see that stress; the stress of hearing Liam ask why someone wasn’t being very nice to us and realizing he’s beginning to understand people’s actions; the stress of dealing with departments outside of pediatrics that don’t have the same empathy as pediatrics; the stress of trying to let things just roll down your back and not let them get to you; the stress of hearing my son continue to be in pain at 1 a.m. but refusing to take pain medicine because he thinks it’s going to taste yucky; the stress of stress; the stress of the unknown…it can get to you.
Liam stories from the week.
On Monday he insisted on going to the new and improved gift store. As he said, “let’s go there and find some stuff I really like and get it!” OK, Liam, considering what you’re dealing with this week…that’s a fairly simple request to honor. What did he pick? Two balloons…one for him and one for Ella. He picked a Pooh Bear balloon for him and a Tigger balloon for Ella. He couldn’t wait to get home to give her the Tigger balloon. He fell asleep almost every night this week with a hand holding onto his Pooh balloon.
Today he decided that when he has show and tell, he wants Ella to be his show and tell because Ella makes him laugh.
He deals with the pain of antibodies slightly different these days…the room has to be dark, quiet with no TV on and with as little sound from voices as possible…except when he asks me to sing Twinkle Twinkle Little Star.
He has fallen in love with the book, “Curious George Goes to the Hospital.” He wanted it read to him over and over and over again this past weekend and every day this week. The first time it was read to him, he stopped me after the page about the operating room was read and said, “Mommy – I’ve been to that room…I’ve been there with Dr. LaQuaglia (or as Liam says, La-quak-luh).” I quizzed him a bit but he said, “Mommy – I was in that room…without you or Daddy…and the room was white with bright lights and a table.” OK. Does he really remember? If you’re an OR nurse, tell me if the OR room Liam was in was white and if he was awake when he was carried into the room.
Super soft, yellow blankie was returned. The cab driver brought him back to the TLC office. It was filthy with ground in dirt from passenger’s wet and city-street dirty shoes stepping on it….but after Larry thoroughly drenched blankie in a new bio-friendly cleaner and washed it…it looked like new. Liam is very happy.
Ella greets Liam every night very excited but very cautiously. She tries to do anything she can to make him more comfortable. Last night he called out to me while I was standing in the kitchen inhaling food that a friend brought to rub his feet. Ella ran to him and immediately started to rub his feet and cooed to him to feel better.
Liam stories from the week.
On Monday he insisted on going to the new and improved gift store. As he said, “let’s go there and find some stuff I really like and get it!” OK, Liam, considering what you’re dealing with this week…that’s a fairly simple request to honor. What did he pick? Two balloons…one for him and one for Ella. He picked a Pooh Bear balloon for him and a Tigger balloon for Ella. He couldn’t wait to get home to give her the Tigger balloon. He fell asleep almost every night this week with a hand holding onto his Pooh balloon.
Today he decided that when he has show and tell, he wants Ella to be his show and tell because Ella makes him laugh.
He deals with the pain of antibodies slightly different these days…the room has to be dark, quiet with no TV on and with as little sound from voices as possible…except when he asks me to sing Twinkle Twinkle Little Star.
He has fallen in love with the book, “Curious George Goes to the Hospital.” He wanted it read to him over and over and over again this past weekend and every day this week. The first time it was read to him, he stopped me after the page about the operating room was read and said, “Mommy – I’ve been to that room…I’ve been there with Dr. LaQuaglia (or as Liam says, La-quak-luh).” I quizzed him a bit but he said, “Mommy – I was in that room…without you or Daddy…and the room was white with bright lights and a table.” OK. Does he really remember? If you’re an OR nurse, tell me if the OR room Liam was in was white and if he was awake when he was carried into the room.
Super soft, yellow blankie was returned. The cab driver brought him back to the TLC office. It was filthy with ground in dirt from passenger’s wet and city-street dirty shoes stepping on it….but after Larry thoroughly drenched blankie in a new bio-friendly cleaner and washed it…it looked like new. Liam is very happy.
Ella greets Liam every night very excited but very cautiously. She tries to do anything she can to make him more comfortable. Last night he called out to me while I was standing in the kitchen inhaling food that a friend brought to rub his feet. Ella ran to him and immediately started to rub his feet and cooed to him to feel better.
Wednesday, January 16, 2008
Back in the Eye of the Storm and The Loss of Liam’s Beloved Soft Yellow Blankie
So here we are. Scan week with the added bonus of a trip to urgent care on Tuesday night making it four trips to Memorial Sloan-Kettering this week. Liam started complaining of his ear hurting on Tuesday night, the night before he would begin the series of tests to scour his body to detect any signs of cancer. Neither Liam nor Ella have ever had an ear infection which is somewhat ironic…I know more about cancer than I do a simple ear infection. So at 8 pm after complaints of the pain getting worse followed by a temperature, it was off to the hospital. You know the routine…a temperature over 100.4 earns you an instant trip to the hospital for an almost guaranteed dose of antibiotics. Before we even had our coats on, Liam wanted to know if they were going to have to give him a “big boy tubie,” the way he explains having his port accessed. One of the signs he’s becoming aware of his world is that he always asks, “What are you going to do?” or “what’s going to happen?” But he says those words very quickly…almost as if he’s anxious and needs reassurance so that he can be prepared. What I find so incredible about Liam is that if you give him an explanation he understands and accepts, his immediate reaction is, “Oh – OK” and then moves on. I feel a tremendous responsibility to not only protect him but also be up front with him so that he can be comfortable with a situation.
Urgent Care is not our preferred place to hang out in the hospital. It’s set up for adults, not children, and I’ve never seen another child there in any of our visits. It has the feel of adults when you walk in…from the large-screen TV with CNN to chairs that don’t have enough room for a child to lie down. And then when you come in with a child, there’s the feeling of eyes staring at you…to the point that you want to say, “Yes, he has cancer.” After the diagnosis of an ear infection and a call to Dr. Kushner, the news was broken that Liam would need a big boy tubie. So, on with the numbing cream onto his port to make accessing less painful and the 30 minute wait for it to take effect. Now, I don’t know if it’s the fact that Urgent Care just doesn’t deal with children as much as the pediatric day hospital or if there’s some other explanation, but something always has the essence of not going quite right when we’re there. This trip’s “not quite right” aspect was accessing Liam’s port. For the first time since, he screamed in pain...it hurt as the needle pierced through his skin to connect with the port. Really hurt. He screamed like he has never screamed since having his port, and I bristled with anger of “how dare you cause my child pain.” But there was nothing I could do…the pain had already been inflicted. As Liam whimpered in discomfort and anger at having his personal space violated, I felt the pressure of the week of tests and the discomfort of being back in the eye of the storm of Memorial Sloan-Kettering. By the time we left Urgent Care, it was after midnight and Liam insisted on keeping him big boy tubie in…”Can I take it home, Mommy?” Good thing we didn’t really have a choice since the next morning was the beginning of the rounds of tests.
And now D-Day T-minus 10 hours.
It’s always weird to be back in the hospital groove after being out of it. Lights seem brighter as if you need to shield your eyes from the harshness. Sounds are more jarring…the wheels of IV poles, the urgent beeping of pumps. You notice every change since the last time you were there…new flat screen TVs mounted in key areas around the hospital announcing lectures on advancements in cancer-treatment, a different look in the lobby, new chairs in the day hospital waiting area. But what you dread is what you might find out…someone who isn’t doing well or someone who lost their battle. The storm of anxiety swirls around you when you get off the elevator. Being here is not the place you want to be…being here means you have a reason to be here and you really don’t want a reason to be at the hospital.
Wednesday morning and back in Urgent Care but this time because we’re not allowed on the pediatric floor until the results of Liam’s test to confirm he didn’t have RSV are back later that evening. This trip was probably my worst experience in Urgent Care. When I have to explain to a male nurse with attitude that yes, we did need to have contrast in Liam two-hours prior to a CT scan, not one as he was insisting, doesn’t make for the start of a pleasant day. See, again, Urgent Care isn’t used to dealing with children which, as a parent who is her child’s advocate, is totally frustrating. After convincing Liam to drink the contrast, we went to the CT scan area to wait. There was another child waiting. Liam watched the movie he always watches when we’re in the CT waiting area…Rudolph the Red Nosed Reindeer. It’s a routine…watch Rudolph while we wait to be called to the room with the “really big camera.” We’ve been here before…done this…it’s a routine we know but the importance of the test is never lost. Eventually he fell asleep while waiting which wasn’t surprising since he had been in urgent care well past midnight the night before. And then it was our turn. I carried a sleeping Liam into the room. The nurse asked where his IV bag of fluids was. We weren’t hooked up…Urgent Care forgot that detail. (Of course they did…another example of how they’re not used to dealing with children who receive anesthesia and therefore need fluids during CT scans.) She dug around the draws in the large traveling inventory of medical supplies and found a bag of saline and hooked him up. Liam woke up and wanted to know what was going to happen. He knew where we were…we’re always in the same CT room...he asked about different features on the camera…we went through them…he helped push the white medicine that makes him fall asleep…his head became limp and I placed his body, which clearly has become bigger since we began the odyssey, on the scan bed. I kissed him three times from me, Daddy and Ella; left his four puppies and pillow with the special healing crystal that saw Bob Woodruff to health at his side; and left my baby. When Liam’s under anesthesia is the only time I feel I can let my guard down. But this time unlike every other time we’ve gone through a CT scan, I didn’t burst into tears. I worked and watched the red light that was illuminated over the door to the room where Liam’s body was being scanned. And then the light turned off, the door opened, out came the nurse carrying Liam, my baby was transferred to my arms where he groggily looked at me, and went back to sleep. But I couldn’t let him sleep too long because I needed to give him the seven drops of pure iodine he needed to take in preparation for his MIBG injection. He hates the drops…with a passion. But the iodine protects his thyroid from the radioactive MIBG injection which can cause cancer to his thyroid and it has to be in him at least two hours prior to the injection. But here’s one of the things that always frustrates me about this process. One person tells you it’s OK to dilute the drops in liquid, another person tells you it’s not OK and you’re left not knowing what to believe because no matter who you ask you seem to get a different answer. So, I tried to give him the seven “icky tasking” drops that are in a syringe directly in his mouth while explaining to him that if he takes a big drink of milk as the icky drops are going in, he can get it down. He tries…sort of…and throws up right in the lobby of the CT area. Yeah, so much for that idea. Knowing how important it was to get the saline in him prior to the injection of radioactive dye, I diluted it in a few ounces of milk and watched him drink every drop of milk. I hope the person who told me it’s OK for it to be diluted was right.
After we finished we had two hours to wait before he could receive the MIBG injection. What did Liam want to do? Find Gabriel so he could use the floor polisher. He hasn’t talked about Gabriel in months…but clearly Gabriel is part of his long-term memory bank and hasn’t faded away as time has passed. It also makes me wonder what else is part of his long-term memory.
While in Nuclear Medicine, Liam surprised me by taking the hand of one of the nurses and asking her to show him around. She has taken care of him several times but didn’t recognize Liam with weight added to his little body and a full head of hair. She took him around, he held her hand and peered at screens and into doorways, she explained things to him, he listened intently and asked why a lot. He also spent time watching a patient have his lungs scanned which posed lots of questions about what lungs are, where they are, what they do, and what they look like.
On the way home that day, Liam told me he had a good day and wanted to know if I was happy he had taken his contrast so that the doctors could get a “good picture.” Why does he have to know what contrast is? I don’t care about me knowing, but I wish he didn’t need to know about things like pictures of his inside body.
Thursday was the day of the true test…the MIBG Scan. As we waited to be called to the room, Liam played with the collection of toys he brought along from the playroom. Another cancer mom whose infant daughter is on the same 90 day schedule as Liam was there. She was there the same day for the last round of tests. We talked and having her there to soak up some of my tension was nice. And then at one point Liam came over to me, put his hands on my cheeks, looked deep into my eyes and didn’t say a word...just stared. His eyes are gorgeous. They’re the most beautiful brown color, so bright and so warm. The whites of his eyes were really white. And as he stared at me I searched his face and looked at him and said, “You’re going to have a good picture, aren’t you?” And then we were called…and once again I felt Liam’s body go limp from anesthesia and I placed him on the scan bed. And once again I kissed him three times and left his precious puppies and pillow with him and left him the hands of others. I have a love/hate relationship with the MIBG machine. I want it to be thorough, but I don’t want it to find anything. I treat it with reverence but I loath what it does. It’s a long test…about an hour…and the time in the waiting area is the most unnatural experience knowing how important this test is. But you do it...because you have to…and each test you get through is another milestone.
Friday was the day of the bone marrow extraction from four sites in his pelvis. It was raining, hard, and we couldn’t find the cover for the stroller to protect him. He clutched his Cars umbrella while we tried to find a cab, never an easy task in the morning when it’s raining. It was still dark and Liam kept asking where the cabs were and why they weren’t there yet. We found one…dashed across a lane of traffic to reach it in the middle lane….got in…and were on our way. We exited from the door on the opposite side and dashed as quickly as possible to the doors of the hospital. As soon as we got inside the doors, I realized what had just happened. Liam’s beloved soft yellow blankie, the one that has kept him protected and warm every day, was left behind in the cab. We both immediately knew what happened. I told him we’d get it back and as soon as we checked in called the number on the taxi receipt to file a lost item report. Surely the cab driver who knew where we were going and knew a little boy was the patient would bring the blankie back, right?
We waited in the “procedure room” waiting area. This is the place where you can feel cornered. There isn’t a lot of room to escape a conversation you might not want to hear. And for the third time that week it was Liam’s turn and I carried him into a room to feel his body become limp from anesthesia. I had warned the team in the room to hide all needles and scary looking things. They did except for one syringe that was being emptied. Liam immediately asked, “what are they going to do?” And with this procedure, the explanation is…”they’re going to take a little blood in funny places which is why they make sure you don’t feel anything by giving you the white medicine.”
And then the tests are over and we wait.
On Monday we received the results of the scans…both are clean. Now we’re waiting for the bone marrow results which should be in at the end of the week. It looks like we have another 90-day window and while of course I’m happy…I’m also very cautious. We have five more of these “super test” weeks to get through before we can breath a little bit easier. One day at a time, one test at a time.
The super soft yellow blankie wasn’t returned even though messages were left about the importance of it with the cab driver. The driver owns the cab so we were hopeful he’d return the precious lost item knowing that it wasn’t going back to a depot. Liam keeps asking for his “soft, yellow blankie” and I keep delaying him by saying that we haven’t reached the cab driver yet. Every time we get in a cab he asks the driver if he has his blankie.
This week is round six of 3F8 antibody. The good news is there is pain which means the antibody is working. The bad news is there is pain which means Liam’s having a tough week. He misses his blankie and I’m beside myself for having left it behind.
When a friend made dinner for us to make our tough week a bit less difficult, I thought it was unnecessary. We can handle this…we don’t need someone to cook for us. After an almost five hour wait before treatment on Monday that didn’t see us home until 8 pm, I had never tasted a better meal.
Urgent Care is not our preferred place to hang out in the hospital. It’s set up for adults, not children, and I’ve never seen another child there in any of our visits. It has the feel of adults when you walk in…from the large-screen TV with CNN to chairs that don’t have enough room for a child to lie down. And then when you come in with a child, there’s the feeling of eyes staring at you…to the point that you want to say, “Yes, he has cancer.” After the diagnosis of an ear infection and a call to Dr. Kushner, the news was broken that Liam would need a big boy tubie. So, on with the numbing cream onto his port to make accessing less painful and the 30 minute wait for it to take effect. Now, I don’t know if it’s the fact that Urgent Care just doesn’t deal with children as much as the pediatric day hospital or if there’s some other explanation, but something always has the essence of not going quite right when we’re there. This trip’s “not quite right” aspect was accessing Liam’s port. For the first time since, he screamed in pain...it hurt as the needle pierced through his skin to connect with the port. Really hurt. He screamed like he has never screamed since having his port, and I bristled with anger of “how dare you cause my child pain.” But there was nothing I could do…the pain had already been inflicted. As Liam whimpered in discomfort and anger at having his personal space violated, I felt the pressure of the week of tests and the discomfort of being back in the eye of the storm of Memorial Sloan-Kettering. By the time we left Urgent Care, it was after midnight and Liam insisted on keeping him big boy tubie in…”Can I take it home, Mommy?” Good thing we didn’t really have a choice since the next morning was the beginning of the rounds of tests.
And now D-Day T-minus 10 hours.
It’s always weird to be back in the hospital groove after being out of it. Lights seem brighter as if you need to shield your eyes from the harshness. Sounds are more jarring…the wheels of IV poles, the urgent beeping of pumps. You notice every change since the last time you were there…new flat screen TVs mounted in key areas around the hospital announcing lectures on advancements in cancer-treatment, a different look in the lobby, new chairs in the day hospital waiting area. But what you dread is what you might find out…someone who isn’t doing well or someone who lost their battle. The storm of anxiety swirls around you when you get off the elevator. Being here is not the place you want to be…being here means you have a reason to be here and you really don’t want a reason to be at the hospital.
Wednesday morning and back in Urgent Care but this time because we’re not allowed on the pediatric floor until the results of Liam’s test to confirm he didn’t have RSV are back later that evening. This trip was probably my worst experience in Urgent Care. When I have to explain to a male nurse with attitude that yes, we did need to have contrast in Liam two-hours prior to a CT scan, not one as he was insisting, doesn’t make for the start of a pleasant day. See, again, Urgent Care isn’t used to dealing with children which, as a parent who is her child’s advocate, is totally frustrating. After convincing Liam to drink the contrast, we went to the CT scan area to wait. There was another child waiting. Liam watched the movie he always watches when we’re in the CT waiting area…Rudolph the Red Nosed Reindeer. It’s a routine…watch Rudolph while we wait to be called to the room with the “really big camera.” We’ve been here before…done this…it’s a routine we know but the importance of the test is never lost. Eventually he fell asleep while waiting which wasn’t surprising since he had been in urgent care well past midnight the night before. And then it was our turn. I carried a sleeping Liam into the room. The nurse asked where his IV bag of fluids was. We weren’t hooked up…Urgent Care forgot that detail. (Of course they did…another example of how they’re not used to dealing with children who receive anesthesia and therefore need fluids during CT scans.) She dug around the draws in the large traveling inventory of medical supplies and found a bag of saline and hooked him up. Liam woke up and wanted to know what was going to happen. He knew where we were…we’re always in the same CT room...he asked about different features on the camera…we went through them…he helped push the white medicine that makes him fall asleep…his head became limp and I placed his body, which clearly has become bigger since we began the odyssey, on the scan bed. I kissed him three times from me, Daddy and Ella; left his four puppies and pillow with the special healing crystal that saw Bob Woodruff to health at his side; and left my baby. When Liam’s under anesthesia is the only time I feel I can let my guard down. But this time unlike every other time we’ve gone through a CT scan, I didn’t burst into tears. I worked and watched the red light that was illuminated over the door to the room where Liam’s body was being scanned. And then the light turned off, the door opened, out came the nurse carrying Liam, my baby was transferred to my arms where he groggily looked at me, and went back to sleep. But I couldn’t let him sleep too long because I needed to give him the seven drops of pure iodine he needed to take in preparation for his MIBG injection. He hates the drops…with a passion. But the iodine protects his thyroid from the radioactive MIBG injection which can cause cancer to his thyroid and it has to be in him at least two hours prior to the injection. But here’s one of the things that always frustrates me about this process. One person tells you it’s OK to dilute the drops in liquid, another person tells you it’s not OK and you’re left not knowing what to believe because no matter who you ask you seem to get a different answer. So, I tried to give him the seven “icky tasking” drops that are in a syringe directly in his mouth while explaining to him that if he takes a big drink of milk as the icky drops are going in, he can get it down. He tries…sort of…and throws up right in the lobby of the CT area. Yeah, so much for that idea. Knowing how important it was to get the saline in him prior to the injection of radioactive dye, I diluted it in a few ounces of milk and watched him drink every drop of milk. I hope the person who told me it’s OK for it to be diluted was right.
After we finished we had two hours to wait before he could receive the MIBG injection. What did Liam want to do? Find Gabriel so he could use the floor polisher. He hasn’t talked about Gabriel in months…but clearly Gabriel is part of his long-term memory bank and hasn’t faded away as time has passed. It also makes me wonder what else is part of his long-term memory.
While in Nuclear Medicine, Liam surprised me by taking the hand of one of the nurses and asking her to show him around. She has taken care of him several times but didn’t recognize Liam with weight added to his little body and a full head of hair. She took him around, he held her hand and peered at screens and into doorways, she explained things to him, he listened intently and asked why a lot. He also spent time watching a patient have his lungs scanned which posed lots of questions about what lungs are, where they are, what they do, and what they look like.
On the way home that day, Liam told me he had a good day and wanted to know if I was happy he had taken his contrast so that the doctors could get a “good picture.” Why does he have to know what contrast is? I don’t care about me knowing, but I wish he didn’t need to know about things like pictures of his inside body.
Thursday was the day of the true test…the MIBG Scan. As we waited to be called to the room, Liam played with the collection of toys he brought along from the playroom. Another cancer mom whose infant daughter is on the same 90 day schedule as Liam was there. She was there the same day for the last round of tests. We talked and having her there to soak up some of my tension was nice. And then at one point Liam came over to me, put his hands on my cheeks, looked deep into my eyes and didn’t say a word...just stared. His eyes are gorgeous. They’re the most beautiful brown color, so bright and so warm. The whites of his eyes were really white. And as he stared at me I searched his face and looked at him and said, “You’re going to have a good picture, aren’t you?” And then we were called…and once again I felt Liam’s body go limp from anesthesia and I placed him on the scan bed. And once again I kissed him three times and left his precious puppies and pillow with him and left him the hands of others. I have a love/hate relationship with the MIBG machine. I want it to be thorough, but I don’t want it to find anything. I treat it with reverence but I loath what it does. It’s a long test…about an hour…and the time in the waiting area is the most unnatural experience knowing how important this test is. But you do it...because you have to…and each test you get through is another milestone.
Friday was the day of the bone marrow extraction from four sites in his pelvis. It was raining, hard, and we couldn’t find the cover for the stroller to protect him. He clutched his Cars umbrella while we tried to find a cab, never an easy task in the morning when it’s raining. It was still dark and Liam kept asking where the cabs were and why they weren’t there yet. We found one…dashed across a lane of traffic to reach it in the middle lane….got in…and were on our way. We exited from the door on the opposite side and dashed as quickly as possible to the doors of the hospital. As soon as we got inside the doors, I realized what had just happened. Liam’s beloved soft yellow blankie, the one that has kept him protected and warm every day, was left behind in the cab. We both immediately knew what happened. I told him we’d get it back and as soon as we checked in called the number on the taxi receipt to file a lost item report. Surely the cab driver who knew where we were going and knew a little boy was the patient would bring the blankie back, right?
We waited in the “procedure room” waiting area. This is the place where you can feel cornered. There isn’t a lot of room to escape a conversation you might not want to hear. And for the third time that week it was Liam’s turn and I carried him into a room to feel his body become limp from anesthesia. I had warned the team in the room to hide all needles and scary looking things. They did except for one syringe that was being emptied. Liam immediately asked, “what are they going to do?” And with this procedure, the explanation is…”they’re going to take a little blood in funny places which is why they make sure you don’t feel anything by giving you the white medicine.”
And then the tests are over and we wait.
On Monday we received the results of the scans…both are clean. Now we’re waiting for the bone marrow results which should be in at the end of the week. It looks like we have another 90-day window and while of course I’m happy…I’m also very cautious. We have five more of these “super test” weeks to get through before we can breath a little bit easier. One day at a time, one test at a time.
The super soft yellow blankie wasn’t returned even though messages were left about the importance of it with the cab driver. The driver owns the cab so we were hopeful he’d return the precious lost item knowing that it wasn’t going back to a depot. Liam keeps asking for his “soft, yellow blankie” and I keep delaying him by saying that we haven’t reached the cab driver yet. Every time we get in a cab he asks the driver if he has his blankie.
This week is round six of 3F8 antibody. The good news is there is pain which means the antibody is working. The bad news is there is pain which means Liam’s having a tough week. He misses his blankie and I’m beside myself for having left it behind.
When a friend made dinner for us to make our tough week a bit less difficult, I thought it was unnecessary. We can handle this…we don’t need someone to cook for us. After an almost five hour wait before treatment on Monday that didn’t see us home until 8 pm, I had never tasted a better meal.
Monday, January 14, 2008
Early Morning January 8th
http://abcnews.go.com/Video/playerIndex?id=4069205&affil=wabc
Where do I begin? It’s a New Year. I love the opening week of a New Year. There’s so much promise and hope and, well, newness. And while 2007 certainly was a year that proved challenging, it’s one that gave us a refresher course about many important life lessons. Would we prefer that cancer hadn’t entered our lives? Absolutely. Do we wish we were playing the role of Ebenezer Scrooge and finding ourselves just waking up from a horrible night of life-altering dreams? In a heartbeat. But we’re not and Liam has a stomach-churning week of scans commencing in just a few hours that will take him through this week. And next week, after a two month break, he is scheduled to receive his sixth round of antibody treatment. I broke the news to him that he needed to have some “pictures” taken and give some blood this week. Since the early days, we’ve referred to a CT and MIBG scans as pictures since…after all…that’s what a scan is, a picture, and having his picture taken is a concept he can understand. What’s amazing is how excited he was when he heard he had to have his picture taken. Since the day I mentioned it, he talked about it nonstop. He wanted to know exactly what day he’d be having his picture taken, how far away it was, and then wanted an explanation about how it’s possible to take a picture of your inside body. Ah, right…fire up the explanation about how it’s possible to take pictures on the inside. When I reminded him they take a picture of his whole body, not just his face, he wanted to know why there had to be a hole in his body…which led to a conversation about the difference in the meaning of hole and whole. With Liam, you constantly are on your toes…there always is a question to an explanation and an opportunity to learn. “Why” continues to be one of his favorite words but I feel like there’s a new edge to it. Sometimes I feel like he’s asking me a “why” question over and over to make sure I don’t change my explanation. It’s almost as if he’s a little wiser and more wary…which makes me sad. “Why does Dr. Kushner want to see my insides?”
Prince Liam is growing and maturing so quickly. I think the lack of socialization during the intense phase of treatment made him miss out on socialization with his peers, but he’s making up for lost time. He does, though, sometimes skeptically look at a group of children like he’s deciding how to jump in and play. And the lack of communication with other children during his intense treatment appeared to have an impact on his language skills, but he’s learning more words every day. He’s finally out of diapers and wearing “big boy underwear” which he loves. He now picks out his own clothing every morning and insists on getting dressed by himself and had his first haircut post-chemo. The haircut was tough for me. As much as I tried to treat it as just a “regular” haircut, I had to push away the impulse to drop to my hands and knees and pick up every strand of beautiful hair being cut from his head. True to Liam spirit, the prince was fascinated with everything that had a button or knob in the “hair cut store,” and insisted on drying his hair under the big hair dryer that comes down over your head. He also insisted on helping the person cutting his hair by holding her hand to help guide her. It was so nice to see him helping someone do something so routine as cutting hair instead of hooking up chemo or flushing a line with heparin.
The cookie project was incredibly rewarding and completely draining for all of us…me, Larry, Liam and Ella. It was a project that, quite frankly, never should have happened in the timeframe it was planned which was less than two months. It only happened because so many people shared the vision and the possibilities and decided to step up and get involved. The details that needed to be coordinated were dizzying and things that, for the most part, were completely new to us like navigating UPS software. Some of the random acts of kindness included people showing up with a stack of money collected at their work to go towards our cause; the owner of a crane company who heard we needed to rent a freezer truck for two weeks and sent a check on the spot to cover the cost; Sally Sampson who was always, always there with everything from incredible recipes to stalwart support; Jacqueline’s Bakery which spent weeks adapting Sally’s recipes from home use to 500 lb batches and then sold us the dough for literally nothing; Carl Tremblay, an incredible food photographer who donated his time and services to take mouth-watering photos of Sally’s delicious cookies; John at Big Apple Warehouse who housed our freezer truck and took care of fueling it every few days without being asked…just did it; Real Stores which built our website and spent until 4 a.m. one night getting it ready by our deadline; an office supply company that wants to remain anonymous that donated gift boxes and shipping boxes; Atlas Packaging which donated customized shipping boxes; the truck rental company that gave us a truck at no cost to transport 8 pallets of shipping supplies from a warehouse in Pennsylvania to Brooklyn; friends of my mother who made the trek with her to Brooklyn and then helped transfer those 8 pallets of supplies from one truck to another; and so many other people who came forward to do whatever they could to help us succeed.
We tried to play out every scenario we could think of but one scenario we never considered was ovens breaking. The project was exhausting both physically and mentally with 15+ hour days for 18 consecutive days. And some of the things we found ourselves doing were both comical and somewhat absurd…but Colleen, a new friend with no connection to the cancer world other than being a caring, compassionate person, jumped in full-force to make the fundraiser happen. Without her help, Cookies for Kids’ Cancer wouldn’t have happened. Many times we would just look at each other and shake our heads at some of the things we found ourselves doing. Who knew driving a commercial van through snowy Brooklyn streets en route to the spooky Brooklyn Naval Yards at 10:30 p.m., on a weekend night, to collect 25 28-lb cases of frozen cookie dough from the freezer truck that was 0 degrees and so cold it would make your lungs hurt just to breath in would be an experience added to all the other bizarre ones of 2007? There were so many details to keep track of on so many different levels from how many 40-pound boxes of paper shred were in inventory (inventory was stored a 17-foot rental truck sitting in a parking lot a few blocks away from the kitchen) to the special orders and requests coming in from all over the country, and perfecting the proper amount of packing material to protect the cookies from breaking. And, at times, it was stressful. (What do you mean the ovens are broken? How can that be? And how am I going to find another commercial kitchen to rent in the next few hours during the busiest baking season of the year?) We also were in a facility that had no heat except for two, small antiquated space heaters that threw off heat about three inches from the unit. At one point, I couldn’t believe our volunteers didn’t abandon us when the room they were in was so cold you could see your breath. Everyone that night looked like they were smoking up a storm. Most nights my body was so cold that when I finally got home, I slept in my jacket because I just couldn’t get warm. But somehow none of the stress of the situation really mattered because all I could see in my mind’s eye as we kept dealing with what seemed like issue after issue were the faces of the princes and princesses like Liam who are battling neuroblastoma, especially those who have already developed resistance to the current version of antibody and are in even more urgent need of the new version. Any of the stresses of the curve balls thrown at us during the odyssey paled in comparison to the responsibility I felt to make the cookie concept succeed. It had to succeed…too much was at stake. What I found so amazing during the process was the incredible camaraderie formed by the more then 350 volunteers to get the job done. Seeing people come back day after day to volunteer their time to our cause was inspiring. I don’t think one volunteer left without thanking us for the opportunity. And the people who passed through our little “project that could” included a wide range of people from professional chefs and photographers to professional firemen. Yes, Liam’s firemen were there in full force for several nights of baking, bagging and packaging. Liam’s firemen might be fire fighters by profession, but their hidden talent lies in the kitchen….they were wonderful and seeing the bonds they formed with friends from my BC (before cancer) life coming together for one cause was humbling. And then there were the people who had no connection to the cancer world but who heard about our effort and wanted to help like the finance person with the cool aprons who took several days of vacation to make sure we succeeded. Faith, a cooking school instructor, who volunteered five consecutive days to manage the finicky ovens with precision and accuracy that would have impressed any drill sergeant. Tina and the entire staff and student body at the French Culinary Institute which not only allowed us to have an emergency 6-hour Sunday baking session at their pristine facility but also answered question after question after question about all things relating to cookies. The staff and students at the Institute of Culinary Education who did supplemental baking for us when we initially realized a kitchen we thought had four working ovens only had two. Nicole Kaplan who rallied dozens of pastry chefs to donate baked goods for our auction. The staff of Gourmet Magazine…I think someone from Gourmet volunteered almost every day and on many days it was a team from the magazine to offer food and moral support. During one shift we had three people from The NY Times volunteering who had no connection to each other but had some connection to the cookie event. The list goes on and on and on...and on. It was just so amazing to see so many people who cared enough about what we were doing to want to get involved in, at times, less than ideal working conditions. And then there was the day the ovens broke. What a day. It was the seventh day of baking and the eighth day I hadn’t seen my family for more than 20 minutes. But the old adage about life giving you lemons came into play that day when amidst my tears of frustration, exhaustion, disappointment and stress a dear, dear friend remembered a gorgeous, new commercial kitchen in Manhattan she had recently seen that was going to be opening soon. After a few phone calls, we were set to visit the kitchen but I didn’t hold out much hope it truly would be available. It would just be too good to be true. But the amazing well-equipped, clean and new commercial kitchen at The Astor Center was available and the staff warmly welcomed us to use their stunning location to complete our project…at no cost. I have never been so happy to feel heat, see new ovens and clean bathrooms. The words, Taj Mahal of kitchens, kept running through my head during our time at the kitchen. And then there was the night we wound up baking until 4 a.m. in order to be finished by our deadline. Oh, and the last day of baking when we realized we were a few hundred dozen short of chocolate chip cookies and needed to recreate the recipe for home use to commercial use in order to fulfill orders. A food writer for the NY Times Magazine and a dear friend who is a recipe developer and cooking class instructor spent hour after hour calculating, adjusting, testing, recalculating, adjusting, and testing batches of cookie dough until they had it right. Jill and Marge had not met before but certainly got to know each other well as they passionately worked to develop the large batches of dough. They looked and sounded like mad scientists on a mission. How in the world do you ever thank someone enough for being so dedicated to ensuring our success and giving up the majority of a weekend to our cause? And, halfway through the massive bake-a-thon, there was the back-to-reality trip to Memorial Sloan-Kettering’s Urgent Care Center to address a 102 fever which required accessing our pumpkin’s medical port which is always difficult emotionally to deal with…it’s when he’s accessed that we are jolted into the reality of how serious the situation is. After a dose of high-powered antibiotics and blood samples to test for infection which is a constant threat with a medical port, we were home. In the end, Operation Cookie Fundraiser was a tremendous success but also a tremendous commitment of precious time and energy. I don’t think I realized just how precarious the balance of my life is until the project was underway. When I was a working mother with two children, that balance was fairly delicate. I always felt the challenge of giving the proper amount of energy to each of my “constituents”…children, husband, co-workers and friends. But when I became a mother of a child with cancer, that balance tipped and it has been a constant challenge to keep the scale in balance. It all stays together, somehow, but barely. The cookie project completely tipped the scale and the people who suffered, I’m afraid, were my family and friends. Christmas presents weren’t purchased until literally the last possible minute. Some presents were even purchased by Colleen while she shopped for her own children. Holiday cards to the hundreds of people who have kept us going throughout this past year weren’t sent which is something I still feel terrible about. (Look for a Valentine’s Day card!) The tree wasn’t decorated until December 22nd. Holiday meals weren’t planned ahead of time. And cookies for my family certainly weren’t baked! The week of Christmas was spent recovering and responding to questions from cookie purchasers or recipients. I learned two very practical but extremely important lessons during the cookie project: Always sign your last name on a gift card…unless it’s going to a very close friend…you wouldn’t believe how many people didn’t recognize the name of the gift giver. And always make sure you’re sending to the correct address which includes putting an apartment or suite number…there were many returned packages because someone had moved or the address didn’t have an apartment number and couldn’t be delivered.
Onto Christmas…This year Liam “got” the whole Santa thing. He couldn’t wait for Santa to arrive. He didn’t have a specific item he wanted…he just wanted Santa to bring him “lots of presents.” The night before Christmas, he left some of his precious “yellow cookies” (aka Sally’s citrus shortbread) out, a glass of milk, and spent time drawing a map for Santa of how to get from our house to his house. He was very specific with what he wanted his map to have on it which was precious to watch. Christmas morning truly was magical watching Liam and Ella open presents. But what kept flashing through my head were the names of the children who were lost to cancer this past year who we either knew or knew of since Liam was diagnosed. I kept thinking about the pain those families must be feeling on Christmas morning. The wish that our cookie fundraiser made millions or that more research funding would be directed towards pediatric cancer, especially those cancers with the worst odds that need the most help, was another kept popping into my head as I watched Liam. I tried to stay focused in the moment, but it was difficult. The other flash that kept going into my head was the number of days until our 90-day scans. It’s so hard knowing what I know and trying to keep the façade up for Liam. Yes, I’m happy and so, so appreciative of every second, minute, hour and day with him…but sometimes those thoughts that distract me from the present creep in. Liam, though, enjoyed wearing his new firefighter jacket and helmet while working on his Bob the Builder workbench. His best present was a new fire truck that he loves driving around the parking area. I am convinced Liam is the best 3-year old driver…he amazes me at how well he can steer and do complicated driving moves like park his truck in a very tight space. And Ella was beside herself with joy when she received four baby dolls for Christmas and a collection of Beanie Babies. She loves her babies…and now insists on sleeping with them at night.
We also finally found out the address of Liam’s London pen pal. The postcards we receive from someone who learned about our plight and decided to start writing to us have been a tremendous support. We love the postcards and have saved every one. The strength and comfort they offer knowing that someone is thinking about you is incalculable. We now have a picture of Liam’s pen pal prominently displayed in our kitchen and Liam wants to know when they can get together to play.
Liam’s new favorite phrases are, “I Love you, and you Love me!”, “Are you happy?”, “I always do it that way,” and “That’s a great idea!” The “I always do it that way” is my favorite…he talks as if he has been doing things a specific way for decades. Then again the life he has lived the past year probably makes him feel like he has been living for decades and not 43 months. The “I always do it that way” phrase is used with everything from eating to the way he takes pills. He loves it. He also sings…a lot….and usually while he’s playing or just going about doing his thing. His two favorite songs continue to be “Mr. Sun, Sun, Mr. Golden Sun, Please shine down on me” and “Twinkle, Twinkle, Little Star.” Curious George is still tops with Caillou a close second. At one point while we were home over the holidays, I pulled out the Curious George DVD a supporter of Liam’s sent. I wish I had an instant way of communicating with the people who have been so supportive to let them know how often their thoughtful gift is used or appreciated. Those thank you notes will get written this year…they have to…it’s another one of those things that keeps me up at night.
Our wish for everyone is for a very happy and healthy New Year. Our wish for Liam is that 2007 was the tough year and that every year from here on out is one that sees him growing, learning, discovering and laughing.
Thank you, everyone, who has been a part of the journey so far. Your support means more to us than words can explain.
Love,
Gretchen, Larry, Liam and Ella
Where do I begin? It’s a New Year. I love the opening week of a New Year. There’s so much promise and hope and, well, newness. And while 2007 certainly was a year that proved challenging, it’s one that gave us a refresher course about many important life lessons. Would we prefer that cancer hadn’t entered our lives? Absolutely. Do we wish we were playing the role of Ebenezer Scrooge and finding ourselves just waking up from a horrible night of life-altering dreams? In a heartbeat. But we’re not and Liam has a stomach-churning week of scans commencing in just a few hours that will take him through this week. And next week, after a two month break, he is scheduled to receive his sixth round of antibody treatment. I broke the news to him that he needed to have some “pictures” taken and give some blood this week. Since the early days, we’ve referred to a CT and MIBG scans as pictures since…after all…that’s what a scan is, a picture, and having his picture taken is a concept he can understand. What’s amazing is how excited he was when he heard he had to have his picture taken. Since the day I mentioned it, he talked about it nonstop. He wanted to know exactly what day he’d be having his picture taken, how far away it was, and then wanted an explanation about how it’s possible to take a picture of your inside body. Ah, right…fire up the explanation about how it’s possible to take pictures on the inside. When I reminded him they take a picture of his whole body, not just his face, he wanted to know why there had to be a hole in his body…which led to a conversation about the difference in the meaning of hole and whole. With Liam, you constantly are on your toes…there always is a question to an explanation and an opportunity to learn. “Why” continues to be one of his favorite words but I feel like there’s a new edge to it. Sometimes I feel like he’s asking me a “why” question over and over to make sure I don’t change my explanation. It’s almost as if he’s a little wiser and more wary…which makes me sad. “Why does Dr. Kushner want to see my insides?”
Prince Liam is growing and maturing so quickly. I think the lack of socialization during the intense phase of treatment made him miss out on socialization with his peers, but he’s making up for lost time. He does, though, sometimes skeptically look at a group of children like he’s deciding how to jump in and play. And the lack of communication with other children during his intense treatment appeared to have an impact on his language skills, but he’s learning more words every day. He’s finally out of diapers and wearing “big boy underwear” which he loves. He now picks out his own clothing every morning and insists on getting dressed by himself and had his first haircut post-chemo. The haircut was tough for me. As much as I tried to treat it as just a “regular” haircut, I had to push away the impulse to drop to my hands and knees and pick up every strand of beautiful hair being cut from his head. True to Liam spirit, the prince was fascinated with everything that had a button or knob in the “hair cut store,” and insisted on drying his hair under the big hair dryer that comes down over your head. He also insisted on helping the person cutting his hair by holding her hand to help guide her. It was so nice to see him helping someone do something so routine as cutting hair instead of hooking up chemo or flushing a line with heparin.
The cookie project was incredibly rewarding and completely draining for all of us…me, Larry, Liam and Ella. It was a project that, quite frankly, never should have happened in the timeframe it was planned which was less than two months. It only happened because so many people shared the vision and the possibilities and decided to step up and get involved. The details that needed to be coordinated were dizzying and things that, for the most part, were completely new to us like navigating UPS software. Some of the random acts of kindness included people showing up with a stack of money collected at their work to go towards our cause; the owner of a crane company who heard we needed to rent a freezer truck for two weeks and sent a check on the spot to cover the cost; Sally Sampson who was always, always there with everything from incredible recipes to stalwart support; Jacqueline’s Bakery which spent weeks adapting Sally’s recipes from home use to 500 lb batches and then sold us the dough for literally nothing; Carl Tremblay, an incredible food photographer who donated his time and services to take mouth-watering photos of Sally’s delicious cookies; John at Big Apple Warehouse who housed our freezer truck and took care of fueling it every few days without being asked…just did it; Real Stores which built our website and spent until 4 a.m. one night getting it ready by our deadline; an office supply company that wants to remain anonymous that donated gift boxes and shipping boxes; Atlas Packaging which donated customized shipping boxes; the truck rental company that gave us a truck at no cost to transport 8 pallets of shipping supplies from a warehouse in Pennsylvania to Brooklyn; friends of my mother who made the trek with her to Brooklyn and then helped transfer those 8 pallets of supplies from one truck to another; and so many other people who came forward to do whatever they could to help us succeed.
We tried to play out every scenario we could think of but one scenario we never considered was ovens breaking. The project was exhausting both physically and mentally with 15+ hour days for 18 consecutive days. And some of the things we found ourselves doing were both comical and somewhat absurd…but Colleen, a new friend with no connection to the cancer world other than being a caring, compassionate person, jumped in full-force to make the fundraiser happen. Without her help, Cookies for Kids’ Cancer wouldn’t have happened. Many times we would just look at each other and shake our heads at some of the things we found ourselves doing. Who knew driving a commercial van through snowy Brooklyn streets en route to the spooky Brooklyn Naval Yards at 10:30 p.m., on a weekend night, to collect 25 28-lb cases of frozen cookie dough from the freezer truck that was 0 degrees and so cold it would make your lungs hurt just to breath in would be an experience added to all the other bizarre ones of 2007? There were so many details to keep track of on so many different levels from how many 40-pound boxes of paper shred were in inventory (inventory was stored a 17-foot rental truck sitting in a parking lot a few blocks away from the kitchen) to the special orders and requests coming in from all over the country, and perfecting the proper amount of packing material to protect the cookies from breaking. And, at times, it was stressful. (What do you mean the ovens are broken? How can that be? And how am I going to find another commercial kitchen to rent in the next few hours during the busiest baking season of the year?) We also were in a facility that had no heat except for two, small antiquated space heaters that threw off heat about three inches from the unit. At one point, I couldn’t believe our volunteers didn’t abandon us when the room they were in was so cold you could see your breath. Everyone that night looked like they were smoking up a storm. Most nights my body was so cold that when I finally got home, I slept in my jacket because I just couldn’t get warm. But somehow none of the stress of the situation really mattered because all I could see in my mind’s eye as we kept dealing with what seemed like issue after issue were the faces of the princes and princesses like Liam who are battling neuroblastoma, especially those who have already developed resistance to the current version of antibody and are in even more urgent need of the new version. Any of the stresses of the curve balls thrown at us during the odyssey paled in comparison to the responsibility I felt to make the cookie concept succeed. It had to succeed…too much was at stake. What I found so amazing during the process was the incredible camaraderie formed by the more then 350 volunteers to get the job done. Seeing people come back day after day to volunteer their time to our cause was inspiring. I don’t think one volunteer left without thanking us for the opportunity. And the people who passed through our little “project that could” included a wide range of people from professional chefs and photographers to professional firemen. Yes, Liam’s firemen were there in full force for several nights of baking, bagging and packaging. Liam’s firemen might be fire fighters by profession, but their hidden talent lies in the kitchen….they were wonderful and seeing the bonds they formed with friends from my BC (before cancer) life coming together for one cause was humbling. And then there were the people who had no connection to the cancer world but who heard about our effort and wanted to help like the finance person with the cool aprons who took several days of vacation to make sure we succeeded. Faith, a cooking school instructor, who volunteered five consecutive days to manage the finicky ovens with precision and accuracy that would have impressed any drill sergeant. Tina and the entire staff and student body at the French Culinary Institute which not only allowed us to have an emergency 6-hour Sunday baking session at their pristine facility but also answered question after question after question about all things relating to cookies. The staff and students at the Institute of Culinary Education who did supplemental baking for us when we initially realized a kitchen we thought had four working ovens only had two. Nicole Kaplan who rallied dozens of pastry chefs to donate baked goods for our auction. The staff of Gourmet Magazine…I think someone from Gourmet volunteered almost every day and on many days it was a team from the magazine to offer food and moral support. During one shift we had three people from The NY Times volunteering who had no connection to each other but had some connection to the cookie event. The list goes on and on and on...and on. It was just so amazing to see so many people who cared enough about what we were doing to want to get involved in, at times, less than ideal working conditions. And then there was the day the ovens broke. What a day. It was the seventh day of baking and the eighth day I hadn’t seen my family for more than 20 minutes. But the old adage about life giving you lemons came into play that day when amidst my tears of frustration, exhaustion, disappointment and stress a dear, dear friend remembered a gorgeous, new commercial kitchen in Manhattan she had recently seen that was going to be opening soon. After a few phone calls, we were set to visit the kitchen but I didn’t hold out much hope it truly would be available. It would just be too good to be true. But the amazing well-equipped, clean and new commercial kitchen at The Astor Center was available and the staff warmly welcomed us to use their stunning location to complete our project…at no cost. I have never been so happy to feel heat, see new ovens and clean bathrooms. The words, Taj Mahal of kitchens, kept running through my head during our time at the kitchen. And then there was the night we wound up baking until 4 a.m. in order to be finished by our deadline. Oh, and the last day of baking when we realized we were a few hundred dozen short of chocolate chip cookies and needed to recreate the recipe for home use to commercial use in order to fulfill orders. A food writer for the NY Times Magazine and a dear friend who is a recipe developer and cooking class instructor spent hour after hour calculating, adjusting, testing, recalculating, adjusting, and testing batches of cookie dough until they had it right. Jill and Marge had not met before but certainly got to know each other well as they passionately worked to develop the large batches of dough. They looked and sounded like mad scientists on a mission. How in the world do you ever thank someone enough for being so dedicated to ensuring our success and giving up the majority of a weekend to our cause? And, halfway through the massive bake-a-thon, there was the back-to-reality trip to Memorial Sloan-Kettering’s Urgent Care Center to address a 102 fever which required accessing our pumpkin’s medical port which is always difficult emotionally to deal with…it’s when he’s accessed that we are jolted into the reality of how serious the situation is. After a dose of high-powered antibiotics and blood samples to test for infection which is a constant threat with a medical port, we were home. In the end, Operation Cookie Fundraiser was a tremendous success but also a tremendous commitment of precious time and energy. I don’t think I realized just how precarious the balance of my life is until the project was underway. When I was a working mother with two children, that balance was fairly delicate. I always felt the challenge of giving the proper amount of energy to each of my “constituents”…children, husband, co-workers and friends. But when I became a mother of a child with cancer, that balance tipped and it has been a constant challenge to keep the scale in balance. It all stays together, somehow, but barely. The cookie project completely tipped the scale and the people who suffered, I’m afraid, were my family and friends. Christmas presents weren’t purchased until literally the last possible minute. Some presents were even purchased by Colleen while she shopped for her own children. Holiday cards to the hundreds of people who have kept us going throughout this past year weren’t sent which is something I still feel terrible about. (Look for a Valentine’s Day card!) The tree wasn’t decorated until December 22nd. Holiday meals weren’t planned ahead of time. And cookies for my family certainly weren’t baked! The week of Christmas was spent recovering and responding to questions from cookie purchasers or recipients. I learned two very practical but extremely important lessons during the cookie project: Always sign your last name on a gift card…unless it’s going to a very close friend…you wouldn’t believe how many people didn’t recognize the name of the gift giver. And always make sure you’re sending to the correct address which includes putting an apartment or suite number…there were many returned packages because someone had moved or the address didn’t have an apartment number and couldn’t be delivered.
Onto Christmas…This year Liam “got” the whole Santa thing. He couldn’t wait for Santa to arrive. He didn’t have a specific item he wanted…he just wanted Santa to bring him “lots of presents.” The night before Christmas, he left some of his precious “yellow cookies” (aka Sally’s citrus shortbread) out, a glass of milk, and spent time drawing a map for Santa of how to get from our house to his house. He was very specific with what he wanted his map to have on it which was precious to watch. Christmas morning truly was magical watching Liam and Ella open presents. But what kept flashing through my head were the names of the children who were lost to cancer this past year who we either knew or knew of since Liam was diagnosed. I kept thinking about the pain those families must be feeling on Christmas morning. The wish that our cookie fundraiser made millions or that more research funding would be directed towards pediatric cancer, especially those cancers with the worst odds that need the most help, was another kept popping into my head as I watched Liam. I tried to stay focused in the moment, but it was difficult. The other flash that kept going into my head was the number of days until our 90-day scans. It’s so hard knowing what I know and trying to keep the façade up for Liam. Yes, I’m happy and so, so appreciative of every second, minute, hour and day with him…but sometimes those thoughts that distract me from the present creep in. Liam, though, enjoyed wearing his new firefighter jacket and helmet while working on his Bob the Builder workbench. His best present was a new fire truck that he loves driving around the parking area. I am convinced Liam is the best 3-year old driver…he amazes me at how well he can steer and do complicated driving moves like park his truck in a very tight space. And Ella was beside herself with joy when she received four baby dolls for Christmas and a collection of Beanie Babies. She loves her babies…and now insists on sleeping with them at night.
We also finally found out the address of Liam’s London pen pal. The postcards we receive from someone who learned about our plight and decided to start writing to us have been a tremendous support. We love the postcards and have saved every one. The strength and comfort they offer knowing that someone is thinking about you is incalculable. We now have a picture of Liam’s pen pal prominently displayed in our kitchen and Liam wants to know when they can get together to play.
Liam’s new favorite phrases are, “I Love you, and you Love me!”, “Are you happy?”, “I always do it that way,” and “That’s a great idea!” The “I always do it that way” is my favorite…he talks as if he has been doing things a specific way for decades. Then again the life he has lived the past year probably makes him feel like he has been living for decades and not 43 months. The “I always do it that way” phrase is used with everything from eating to the way he takes pills. He loves it. He also sings…a lot….and usually while he’s playing or just going about doing his thing. His two favorite songs continue to be “Mr. Sun, Sun, Mr. Golden Sun, Please shine down on me” and “Twinkle, Twinkle, Little Star.” Curious George is still tops with Caillou a close second. At one point while we were home over the holidays, I pulled out the Curious George DVD a supporter of Liam’s sent. I wish I had an instant way of communicating with the people who have been so supportive to let them know how often their thoughtful gift is used or appreciated. Those thank you notes will get written this year…they have to…it’s another one of those things that keeps me up at night.
Our wish for everyone is for a very happy and healthy New Year. Our wish for Liam is that 2007 was the tough year and that every year from here on out is one that sees him growing, learning, discovering and laughing.
Thank you, everyone, who has been a part of the journey so far. Your support means more to us than words can explain.
Love,
Gretchen, Larry, Liam and Ella
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