(Original post date: 10/29/09)
This comes with a new voice as my “spicy” Liam gains a boatload of confidence. It’s in his actions and most definitely his voice. The boys and I often conduct supervised group experiments after school: watching white carnations turn the color of the food coloring water they are in; making carbonated water out of regular water; practicing “sink or float” on a big towel on the kitchen floor; mixing cement for stepping stones.
And now Liam is conducting his own “exper-ee-ments” which are private affairs that I happen on to. Some of the most memorable ones from the last week…
6:00 a.m. I’m in the living room, trying to finish one cup of coffee before the whole house wakes up. Liam is up and we’ve been through Stage One, as described in the previous post. The night before Liam had discovered a piece of gum, and as he chewed it like a cow, he calmly said, “I’m just trying it out, Mom.” Despite my coaching, as we stared at one another, he swallowed it. Back to 6:00 a.m. I hear paper in the kitchen. I’m not too concerned because that’s where we keep crayons, markers and paper. Then I think, “That’s….little paper.” Liam, sitting in the little mouse hole he loves to create, has found a pack of gum that I missed. I see one wrapper on the floor and start my gum spiel… then I find five more wrappers as he escapes from the hole. “Sorry, Mom,” he says, giving nonchalant a whole new meaning. I tell him if he does this again, I’ll have to take him to the hospital. Then both of us have visions of a nurse blowing bubbles, Liam getting to watch Nemo twice while coloring… There’s no shock value in the word “hospital.”
Will and Liam have a little coffee pot that “really” brews. Liam loves it. Again towel on the kitchen floor, soaking up the overflow, and as usual, Liam is drinking the water from the coffee pot after he brews. He seems happy, contented. I turn on some music and go into the dining room to fold clothes on the table. When I come back, Liam has vacated the brewing area, so I pick up the brewer and empty it. As I pour out the holding tank, the water is thick and brackish – disgusting! I panic, thinking I must not have emptied it the last time and it’s been setting for ages with water and now Liam has just ingested water that will result in Typhoid!! After all, if Scarlet fever is not out of the realm of possibility, then Typhoid is just as plausible. I decide to sniff it, somehow thinking an odor would confirm the chances of Typhoid. Oddly enough it smells like orange juice. I put on my Charlie Brown teacher voice and Liam comes back with, “Sorry, Mom. I was just exper-ee-menting.”
Toileting. Liam is completely toilet trained; some days it takes a lot of self-talk for me to accept this is truly a good thing. As a reminder, the following events have occurred in the last seven days:
Liam finds an old pull-up in a closet – old but clean. He strips all clothing and puts the pull-up on to pee. “I’m just exper-ee-menting, Mom!”
On a Nadir day, I peek into the bathroom to check on Liam who takes quite a while to poop on the potty. And there he is: pants around his ankles, toilet brush in hand, stirring. I’m beside myself. “Moooom, I’m making warm chocolate for you.” -- This is the second batch I’ve had in the last two weeks.
The frequency with which we wash our hands has sent Liam over the edge. His mechanism to deal with it, after going to the bathroom: an expereement to see how high he can get the bubbles in the bathroom sink. No overflow yet, but he has achieved the 6-inch mark.
From toileting events alone, my hair may be completely gray before it falls out.
Then there’s my philosopher Will, who has soaked up everything we’ve said in his presence over the course of his short six-year life, “Mom, he’s just experimenting. Isn’t that what life is all about?” My comeback was, “Life experiences are important too not JUST experimenting.” I have no idea what that means. (I don’t do well thinking on my feet… I like to have time to process. I hope Will and Liam don’t pick up on this until they are away at college; otherwise, I’ll be a sitting duck in heated teenage conversations.)
Hmmm… I just had a brain flash. Mythbusters. The boys, all three of them, love that show. I saw nearly a whole program for the first time last night, and there’s a lot of “how-can-we-make-it-bigger” attitude in there! Seeing it also clarifies Will and Liam’s frequent, and oh-so gleeful, “Busted!” – usually shouted after rolling a big Lego ball down the stairs and watching it shatter at the bottom.
OH MY GOSH! These expereements have NOTHING to do with my controlled science experiments. This is ALL about bigger and better, firing hard cheese out of cannons to see if they will pierce a sail. Bill, we need to talk before Liam sees that episode…. You are soooo busted!
Friday, August 13, 2010
First New Stage:Flipping Out Mom & Dad with the 3- to 4-year-old Schizophrenia Act
(Original post date: 10/29/09)
Will went through this stage as well. That’s how I diagnosed it in Liam. This is how it works. Liam calmly asks for something; I give him exactly what he wants; then he drops into an immediate tantrum saying that’s NOT what he wants. All of the reconciliation attempts I make are futile, only adding to the frustration of this strange little being. For about a week, Bill and I have both tried the calming words, trying to talk Liam through this as he sobs, screams and kicks. Will sobbed and screamed, no kicking. This is tricky for me as I don’t want or need to be kicked, not that anyone does, but I’m like the football player with the bad knee: I have spots that are slightly weak that I try to protect.
Every morning this week between 5:30 and 6:30, we’ve had an episode. It happens throughout the day as well, but not at school. After all, as the character Wilson on "Home Improvement" once said, “Parents are the bone upon which children sharpen their teeth.” I’d much rather take this than hear at the end of a school day that a teacher had to bear the brunt of it.
Yesterday morning, it all started as I handed him his warm chocolate milk that he had asked for but, now that I’m handing it to him, does NOT want it. I finally remember what we did with Will. Pulling “calm karma” from the voices of teachers, I say, “I want to talk to you, but I can’t until you stop this.” Then I leave the room. Bill stumbles upon the episode, and in an exasperated voice says, “I’ll go talk to him.” (Bill’s voice reminds me of the exasperated fish from Nemo that always has to deflate the puffer fish when he pops into a ball.) I say, “I wouldn’t go in there if I were you.” So we listen to the music for 10 minutes. Then into the kitchen Liam comes, gasping for breath after expending so much energy on this tantrum. He sputters in a small breathless voice, “I… need…some…warm….chocolate.” Ah, the power monger alien has left my son’s body. My Liam has returned.
Will went through this stage as well. That’s how I diagnosed it in Liam. This is how it works. Liam calmly asks for something; I give him exactly what he wants; then he drops into an immediate tantrum saying that’s NOT what he wants. All of the reconciliation attempts I make are futile, only adding to the frustration of this strange little being. For about a week, Bill and I have both tried the calming words, trying to talk Liam through this as he sobs, screams and kicks. Will sobbed and screamed, no kicking. This is tricky for me as I don’t want or need to be kicked, not that anyone does, but I’m like the football player with the bad knee: I have spots that are slightly weak that I try to protect.
Every morning this week between 5:30 and 6:30, we’ve had an episode. It happens throughout the day as well, but not at school. After all, as the character Wilson on "Home Improvement" once said, “Parents are the bone upon which children sharpen their teeth.” I’d much rather take this than hear at the end of a school day that a teacher had to bear the brunt of it.
Yesterday morning, it all started as I handed him his warm chocolate milk that he had asked for but, now that I’m handing it to him, does NOT want it. I finally remember what we did with Will. Pulling “calm karma” from the voices of teachers, I say, “I want to talk to you, but I can’t until you stop this.” Then I leave the room. Bill stumbles upon the episode, and in an exasperated voice says, “I’ll go talk to him.” (Bill’s voice reminds me of the exasperated fish from Nemo that always has to deflate the puffer fish when he pops into a ball.) I say, “I wouldn’t go in there if I were you.” So we listen to the music for 10 minutes. Then into the kitchen Liam comes, gasping for breath after expending so much energy on this tantrum. He sputters in a small breathless voice, “I… need…some…warm….chocolate.” Ah, the power monger alien has left my son’s body. My Liam has returned.
Being bionic – the installation and use of a purple titanium port
(Original post date: 10/27/09)
I thought underwire bras were tricky going through airport security. Now I carry an ID card with a serial number to prove that I have a port. Like I’m travelling armed, a license to carry a piece on the plane. Yeah, OK it’s only the size of a quarter, but it’s a long way from Cheerios and a sippy cup.
It’s a docking station for Kibo, but so much more. As I protect it nightly in bed, I must say on days when it jumps into action, I’m most appreciative of its presence. My chemo day starts with a blood draw in the infusion suite. A half hour before I get there, I rub Embla on – a numbing cream. I probably don’t really need it; I think psychologically it makes the idea of accessing the port a little warmer.
By the way, my port was installed on my right side, a couple inches under my collar bone. It’s right under the skin and is raised, so it’s not flush with my skin. A little tube goes out the top of the port, over my collar bone, just under my skin, and into a vein, a more significant vein than the ones accessed in the arm. The tube goes pretty far into the vein. It’s something I need to learn a bit more about. I’m not completely convinced that it won’t slip, say when I move a kitchen table to the toy room. However, I was told that I could resume all normal activity, but Will was not there, so that particular doctor does not know that I have farm muscles. (I was once accused of having super powers by a little girl who watched me carry Liam in his stroller up the stairs by City Hall in Boston. I looked at her and said, “Of course I do… all mommies do.” I winked at the mother as I continued the climb; I’m fairly certain she didn’t appreciate my comment...so I now generally keep that information under my hat.)
The port is tested each time to make sure it’s functioning properly. So once “accessed,” that’s the only little prick. A little saline is flushed through then the nurse pulls back a little bit to check the blood return. While the idea of a port sounds bizarre and a little disconcerting, I went through one week In September that makes me appreciative. I had an IV or blood draw three days in a row from the same spot in the same vein. In my right arm I have a “chubby vein that is irresistible.” That’s a direct quote from a phlebotomist. I needed that week to appreciate this port.
Anyway, first blood is drawn. That is processed immediately to check all functions, in particular to make sure my white blood cell count rebounds so I can safely have another infusion. While the lab processes that, I go upstairs to see my oncologist for a quick physical check. We talk about side effects and how to handle them. Thank God that will hopefully be a short conversation. The port is my major side effect. While sleeping at night, sometimes my awareness of it keeps me awake. Should I sleep more upright? Should it still feel tender?
The magic of it. If you are a scrap booker, this is an easy concept to grasp. The cutting boards scrappers use are made out of self-healing rubber. The board absorbs the cut but then immediately closes up. The very same concept is how entry to a port works. Completely covered by my skin, there is a piece of rubber, about the size of the tip of my little finger that sits on top of the purple titanium base. So that means two things: the needle is held firmly in place with a tight rubbery hug and when it’s done for the day, out the needle comes and the rubber seals immediately. So, out the window with the idea of a gaping port hole, an open invitation to infection. No. This is how it is. That rubber is a scientific wonder that ranks right up there with the magic of Velcro. Which leaves me with the question: as with Velcro, did NASA have a hand in the development of self-healing rubber?
Back to the chemo day… after visiting with the oncologist, I return to the infusion suite for round two. I’ve requested a recliner overlooking the Charles River. The first day we were in a private room with an ordinary, uncomfortable hospital cot. If I’m trekking to MGH’s glass-walled Yawkey building, I want a view. Anyway, my oncology nurse, Beth, gives me three anti-nausea pills then my first infusion begins. It’s just an hour of a hydrating IV. After that, Beth sits next to me and gives me the first med, Adriamycin, via an IV push. It’s pretty concentrated and powerful. She gives me 2ml every couple minutes and it is “watered down” with hydrating fluid. So that med, which happens to be bright red takes about ½ hour. Then I get more hydration before Beth hooks up the second med, Cytoxan, suspended from a traditional IV pole. It’s a drip that takes about an hour. Last time, I took a little nap during this time. Then a little more hydration and we call it a day. Out comes the needle and we go home.
If any of you watch “Brothers and Sisters” you know that Kitty has just started chemo. Two major differences between Kitty and me, well three if you count our weights… I should preface my commentary: I know everyone reacts differently to chemo. I know “chemo” isn’t one medicine; there are many medications under that umbrella and each has its own private list of side effects. I know drama makes good TV. I watched this episode after my first chemo treatment. The following comments are based solely on my own experience.
So... given all of the above... Reacting to the feeling of the chemo entering her body, Kitty gasped and said, “There it is.” There was no moment like that for me. (Hmmm, this could be due to our weight difference now that I think about it...) I actually asked Beth if I would feel anything. She shrugged and shook her head, “No.” And I didn’t. I was eating lunch as Beth went to work on the Adriamycin IV push. I walked into the infusion room with the vision of walking out of the infusion room. Going in and coming out as me. I trusted Beth to do her job then to let me get on with mine. Mentally, I’ve accepted that I have to hand over control on occasion, but I feel more empowered focusing on the moment the control returns to me.
Second, Kitty was treated in LA, deciding against travelling to Boston for treatment. I attribute her nausea to that decision. The two oncologists I “interviewed for the job” (especially my current oncologist who specializes in breast cancer research and treatment) are strongly opposed to their patients feeling nauseated and they are outright against vomiting. Everyone reacts differently; however, the meds to control nausea are amazing. I have a very definite plan to head-off nausea, which includes six different medications if necessary. Thankfully, the first time around the plan worked with four or five. I expect it to work again in the next seven rounds. I’m counting my blessings as one oncologist told me I’m in the group most likely to be ill: I’m young, I don’t drink excessively, and I don’t smoke.
There is one more difference: Kitty didn’t have friends making chicken noodle soup for her. The magic may all be in the chicken noodle soup. I decided that for two days before and two or three days after chemo, my diet is chicken noodle soup. Thank you, excellent soup-ateers, for providing this medicine. :)
I thought underwire bras were tricky going through airport security. Now I carry an ID card with a serial number to prove that I have a port. Like I’m travelling armed, a license to carry a piece on the plane. Yeah, OK it’s only the size of a quarter, but it’s a long way from Cheerios and a sippy cup.
It’s a docking station for Kibo, but so much more. As I protect it nightly in bed, I must say on days when it jumps into action, I’m most appreciative of its presence. My chemo day starts with a blood draw in the infusion suite. A half hour before I get there, I rub Embla on – a numbing cream. I probably don’t really need it; I think psychologically it makes the idea of accessing the port a little warmer.
By the way, my port was installed on my right side, a couple inches under my collar bone. It’s right under the skin and is raised, so it’s not flush with my skin. A little tube goes out the top of the port, over my collar bone, just under my skin, and into a vein, a more significant vein than the ones accessed in the arm. The tube goes pretty far into the vein. It’s something I need to learn a bit more about. I’m not completely convinced that it won’t slip, say when I move a kitchen table to the toy room. However, I was told that I could resume all normal activity, but Will was not there, so that particular doctor does not know that I have farm muscles. (I was once accused of having super powers by a little girl who watched me carry Liam in his stroller up the stairs by City Hall in Boston. I looked at her and said, “Of course I do… all mommies do.” I winked at the mother as I continued the climb; I’m fairly certain she didn’t appreciate my comment...so I now generally keep that information under my hat.)
The port is tested each time to make sure it’s functioning properly. So once “accessed,” that’s the only little prick. A little saline is flushed through then the nurse pulls back a little bit to check the blood return. While the idea of a port sounds bizarre and a little disconcerting, I went through one week In September that makes me appreciative. I had an IV or blood draw three days in a row from the same spot in the same vein. In my right arm I have a “chubby vein that is irresistible.” That’s a direct quote from a phlebotomist. I needed that week to appreciate this port.
Anyway, first blood is drawn. That is processed immediately to check all functions, in particular to make sure my white blood cell count rebounds so I can safely have another infusion. While the lab processes that, I go upstairs to see my oncologist for a quick physical check. We talk about side effects and how to handle them. Thank God that will hopefully be a short conversation. The port is my major side effect. While sleeping at night, sometimes my awareness of it keeps me awake. Should I sleep more upright? Should it still feel tender?
The magic of it. If you are a scrap booker, this is an easy concept to grasp. The cutting boards scrappers use are made out of self-healing rubber. The board absorbs the cut but then immediately closes up. The very same concept is how entry to a port works. Completely covered by my skin, there is a piece of rubber, about the size of the tip of my little finger that sits on top of the purple titanium base. So that means two things: the needle is held firmly in place with a tight rubbery hug and when it’s done for the day, out the needle comes and the rubber seals immediately. So, out the window with the idea of a gaping port hole, an open invitation to infection. No. This is how it is. That rubber is a scientific wonder that ranks right up there with the magic of Velcro. Which leaves me with the question: as with Velcro, did NASA have a hand in the development of self-healing rubber?
Back to the chemo day… after visiting with the oncologist, I return to the infusion suite for round two. I’ve requested a recliner overlooking the Charles River. The first day we were in a private room with an ordinary, uncomfortable hospital cot. If I’m trekking to MGH’s glass-walled Yawkey building, I want a view. Anyway, my oncology nurse, Beth, gives me three anti-nausea pills then my first infusion begins. It’s just an hour of a hydrating IV. After that, Beth sits next to me and gives me the first med, Adriamycin, via an IV push. It’s pretty concentrated and powerful. She gives me 2ml every couple minutes and it is “watered down” with hydrating fluid. So that med, which happens to be bright red takes about ½ hour. Then I get more hydration before Beth hooks up the second med, Cytoxan, suspended from a traditional IV pole. It’s a drip that takes about an hour. Last time, I took a little nap during this time. Then a little more hydration and we call it a day. Out comes the needle and we go home.
If any of you watch “Brothers and Sisters” you know that Kitty has just started chemo. Two major differences between Kitty and me, well three if you count our weights… I should preface my commentary: I know everyone reacts differently to chemo. I know “chemo” isn’t one medicine; there are many medications under that umbrella and each has its own private list of side effects. I know drama makes good TV. I watched this episode after my first chemo treatment. The following comments are based solely on my own experience.
So... given all of the above... Reacting to the feeling of the chemo entering her body, Kitty gasped and said, “There it is.” There was no moment like that for me. (Hmmm, this could be due to our weight difference now that I think about it...) I actually asked Beth if I would feel anything. She shrugged and shook her head, “No.” And I didn’t. I was eating lunch as Beth went to work on the Adriamycin IV push. I walked into the infusion room with the vision of walking out of the infusion room. Going in and coming out as me. I trusted Beth to do her job then to let me get on with mine. Mentally, I’ve accepted that I have to hand over control on occasion, but I feel more empowered focusing on the moment the control returns to me.
Second, Kitty was treated in LA, deciding against travelling to Boston for treatment. I attribute her nausea to that decision. The two oncologists I “interviewed for the job” (especially my current oncologist who specializes in breast cancer research and treatment) are strongly opposed to their patients feeling nauseated and they are outright against vomiting. Everyone reacts differently; however, the meds to control nausea are amazing. I have a very definite plan to head-off nausea, which includes six different medications if necessary. Thankfully, the first time around the plan worked with four or five. I expect it to work again in the next seven rounds. I’m counting my blessings as one oncologist told me I’m in the group most likely to be ill: I’m young, I don’t drink excessively, and I don’t smoke.
There is one more difference: Kitty didn’t have friends making chicken noodle soup for her. The magic may all be in the chicken noodle soup. I decided that for two days before and two or three days after chemo, my diet is chicken noodle soup. Thank you, excellent soup-ateers, for providing this medicine. :)
Day 8: Hermit in House
(Original post date: 10/23/09)
We no longer have a kitchen table. I’ve moved it to the toy room and set up the game table on it for the boys – the game table is a gift from last Christmas that has never really had a home, other than lodged against a wall. There’s this thing called “dining room table” that I’m going to try to implement in daily living.
Bill and I are having our anniversary dinner tonight while the boys have a little Halloween party with Liam’s teacher. :) Since I’ve moved the kitchen table, now I need to find the dining room table as well as a couple candles. The dining room table is currently serving as a flat storage unit… (Don’t worry Bill, there are still bar stools at the kitchen island…if it’s still a storage unit when you get home… :)
Funny, nearly everything on the dining room table is just sitting there waiting to leave the house: old toys, old flowers, old party favors. But, there is one gem on the table: Will came home Tuesday with a plan. He needed supplies – instantly of course – two pieces of paper, green markers, tape and his musical card that sings “I Like to Move It, Move It.” A half hour later the musical card had morphed into a card for me. The musical version was neatly tucked and taped inside the handmade card that included pictures of all of us. “Mom, how to you spell ‘Nice job at chemo’”?? :)
We no longer have a kitchen table. I’ve moved it to the toy room and set up the game table on it for the boys – the game table is a gift from last Christmas that has never really had a home, other than lodged against a wall. There’s this thing called “dining room table” that I’m going to try to implement in daily living.
Bill and I are having our anniversary dinner tonight while the boys have a little Halloween party with Liam’s teacher. :) Since I’ve moved the kitchen table, now I need to find the dining room table as well as a couple candles. The dining room table is currently serving as a flat storage unit… (Don’t worry Bill, there are still bar stools at the kitchen island…if it’s still a storage unit when you get home… :)
Funny, nearly everything on the dining room table is just sitting there waiting to leave the house: old toys, old flowers, old party favors. But, there is one gem on the table: Will came home Tuesday with a plan. He needed supplies – instantly of course – two pieces of paper, green markers, tape and his musical card that sings “I Like to Move It, Move It.” A half hour later the musical card had morphed into a card for me. The musical version was neatly tucked and taped inside the handmade card that included pictures of all of us. “Mom, how to you spell ‘Nice job at chemo’”?? :)
Six days after 1st chemo
(Original post date: 10/21/09)
After much debate over whether or not to go to Maine, I am so glad we went. We had a great but short trip filled with lots of laughs, some hiking and leaf peeping, and a dinner at a little micro-brewery Saturday night.
I'm so happy, and a little reluctant to say, I feel great! I'm not sure what to expect every day, but I'll take this. I have made it through the first six days with no nausea. The six or seven meds did the trick. Yesterday I was a little achy but I think that was from a med to boost my bone marrow and get the white blood cells pumping again.
I have been taking the boys to school, going to school board meetings, and having coffee with friends... all while waiting for a significant change. I will take status quo.
Tomorrow begins the Nadir period: when my white blood cell count will be at its lowest for 7 to 10 or 12 days. So, I'm going to pull back, taking the boys to school and then returning home to lie low. Apparently, this is a deceptive time as I should feel pretty good but my immune system will be weak. By the time the 30th rolls around, my white blood cell count should be up and ready for round two.
Thanks to all of you, once again, for your notes, calls, thoughts and prayers.
:)
Staying strong,
Linda
After much debate over whether or not to go to Maine, I am so glad we went. We had a great but short trip filled with lots of laughs, some hiking and leaf peeping, and a dinner at a little micro-brewery Saturday night.
I'm so happy, and a little reluctant to say, I feel great! I'm not sure what to expect every day, but I'll take this. I have made it through the first six days with no nausea. The six or seven meds did the trick. Yesterday I was a little achy but I think that was from a med to boost my bone marrow and get the white blood cells pumping again.
I have been taking the boys to school, going to school board meetings, and having coffee with friends... all while waiting for a significant change. I will take status quo.
Tomorrow begins the Nadir period: when my white blood cell count will be at its lowest for 7 to 10 or 12 days. So, I'm going to pull back, taking the boys to school and then returning home to lie low. Apparently, this is a deceptive time as I should feel pretty good but my immune system will be weak. By the time the 30th rolls around, my white blood cell count should be up and ready for round two.
Thanks to all of you, once again, for your notes, calls, thoughts and prayers.
:)
Staying strong,
Linda
Day One Done!
(Original post date: 10/16/09)
only seven more to go...
I had described this journey toward chemo as a 777 in a holding pattern, after having flown from Chicago to Hong Kong. Well it finally landed and is still pretty powerful!
I went in to MGH to start chemo with a bit of a sinus heachache and came out with a bit of a sinus headache... After a three hour infusion, I feel like me! I have six different nausea meds to take, some I definitely take every morning for a couple days, others are back-ups.
So, tomorrow (Saturday) morning we are heading up to Sunday River to meet another family. Just a quick overnight -- looking forward to seeing the leaves -- they should be beautiful in the mountains.
Thank you all for your continued thoughts, prayers, cards, vibes, calls, coffees, emails, food... your help. You have created the most incredible extended family for us through your kindness. I hope to stumble upon or even create new words for these two, but for now, it's all I have. Thank you...
And now, my Scarlet fever boy Liam is healthy; however Bill has a cold. So I've chosen the healthiest person and the one who kicks the least in his sleep to snuggle up with tonight: Liam, already fast asleep next to me. (This is a record: we now have all four Malcolms on antibiotics in our house...)
Good night and I hope all of you are healthy and enjoy this fall weekend!
Staying strong,
:)
Linda
only seven more to go...
I had described this journey toward chemo as a 777 in a holding pattern, after having flown from Chicago to Hong Kong. Well it finally landed and is still pretty powerful!
I went in to MGH to start chemo with a bit of a sinus heachache and came out with a bit of a sinus headache... After a three hour infusion, I feel like me! I have six different nausea meds to take, some I definitely take every morning for a couple days, others are back-ups.
So, tomorrow (Saturday) morning we are heading up to Sunday River to meet another family. Just a quick overnight -- looking forward to seeing the leaves -- they should be beautiful in the mountains.
Thank you all for your continued thoughts, prayers, cards, vibes, calls, coffees, emails, food... your help. You have created the most incredible extended family for us through your kindness. I hope to stumble upon or even create new words for these two, but for now, it's all I have. Thank you...
And now, my Scarlet fever boy Liam is healthy; however Bill has a cold. So I've chosen the healthiest person and the one who kicks the least in his sleep to snuggle up with tonight: Liam, already fast asleep next to me. (This is a record: we now have all four Malcolms on antibiotics in our house...)
Good night and I hope all of you are healthy and enjoy this fall weekend!
Staying strong,
:)
Linda
A week on antibiotics
(Original post date: 10/13/09)
Liam spiked a fever late Sunday afternoon. After he spent most of the day yesterday on the couch, I took him to the doctor yesterday afternoon. He has Scarlet fever, which is a form of strep but with a very itchy rash. He's on antibiotics, so are Will and I. Our pediatrician thought Will would break out this week; the head-start on antibiotics should prevent (hopefully) most of the symptoms for him. And I'll be taking antibiotics as a precautionary measure with chemo starting on Friday.
Liam spiked a fever late Sunday afternoon. After he spent most of the day yesterday on the couch, I took him to the doctor yesterday afternoon. He has Scarlet fever, which is a form of strep but with a very itchy rash. He's on antibiotics, so are Will and I. Our pediatrician thought Will would break out this week; the head-start on antibiotics should prevent (hopefully) most of the symptoms for him. And I'll be taking antibiotics as a precautionary measure with chemo starting on Friday.
Tuesday, August 10, 2010
Commemorating Will’s 6th Birthday & Liam’s 3rd Forever Family Day
(Original post date: 10/12/09)
So, while little can top the four-hour ordeal of Liam’s rock-up-his-nose episode, here are a few more one-liners that come to mind to commemorate Will’s 6th birthday and Liam’s Forever Family Day (we brought Liam home from Korea three years ago). Around birthdays and forever family days, I try to jot down a few key quotes or moments that kind of sum up the people they are at that moment in time. Those things that they say or do that we think ‘we’ll never forget that!’ and then poof, something else takes the place of the last best tidbit.
Here are the highlights…
After hearing a crash from the dining room, I hear Liam say, “Awww mannnn, I shouldn’t have done that! Mom, we need some tape!” While he was raising the sails on his pirate ship, the mast broke. Translation: While he was playing with the blinds, the valance fell off the wall.
The question from Will’s teacher that always makes me gasp: “Do you want to know what Will told me today?” And this time he said: “Guess what, my mom has… farm muscles.” Letting out a big breath, I replied, “Ahh, yes I do!”
If Will starts to cry, it takes a lot to get through that emotion; deep breathing works best. When mad at me and in tears one day, Will refused to do deep breathing with me, “I’ll do it with Liam but not with you!” Liam’s little head spun toward Will. They locked eyes and Liam took the lead, calming Will down with one deep breath after another.
Less than a week after my first surgery (and after the above deep breathing exercise), Liam was doing somersaults on our bed and his foot landed about two inches from my incision. I started taking HUGE deep breaths, sucking nearly all the air from the room. Liam looked at me and asked, “Does deep breathing help, Mom? Next time stay out of my way.” I’ve since adopted many protective stances.
Liam is finding his els! Weam is Liam. Towo is towel.
Beautiful noises: the men in my life laughing… Bill’s boisterous laugh; Will’s giggles and Liam’s chortles. It’s an elated symphony when happening simultaneously.
The great fake out: Liam charging full-steam toward me with that grin – while I’m raising my arms in defense – stopping short, he looks up at me and says, “Which side hurts, Mom?” Then he gently kisses my arm on that side and jumps up on my lap on the opposite side. Knowing the strength behind that all-out run, I wouldn’t want to be the opponent facing Liam on the football field in 12 years.
Last Friday picking Liam up from school: “Hey Mom, is your arm OK now?” Me: “Yes, it feels pretty good now.” Liam: “Sooo… It’s OK now?” Me: “Yes, it feels good.” Liam: “Can I roll down the hill now?” Me, not following the string of conversation but going with it: “Sure you can…”
After Bill has persistently explained for days, perhaps weeks, that there is not a snow monster in our house, we finally realized that when Liam hears “There’s no monster!” he is processing it as “There, snow monster!”
Will has written a book about our family. There’s a different sized stick person on every page: each of us at different ages in our lives.
At school, Will drew a picture of his family and labeled each of us with our ages. I’m 33! And even when his teacher asked him if he was sure about that, he stuck with it! That’s my boy!!
Will: “Chemo and Kibo sound a lot alike.” Kibo is the Japanese lab on the space station.
The fascination with tape continues: Coming home from the 2nd surgery, I have new, big bandages on. Liam’s excited, “You have new tracks, Mom?” The wrinkles in the tape are train tracks.
Liam steaming toward me with Scotch tape. “I have more for you, Mom!” He also has a flat tan “Lego band-aid” in his other hand.
Will: “Mom, we’re going spelunking!” Translation: We need flashlights. We’re going to the basement in the dark.
Liam, at the breakfast table yelling at my laptop that's open on the counter, “GRANDMA, ARE YOU THERE?” Webcam and Skype: a beautiful combination.
So, while little can top the four-hour ordeal of Liam’s rock-up-his-nose episode, here are a few more one-liners that come to mind to commemorate Will’s 6th birthday and Liam’s Forever Family Day (we brought Liam home from Korea three years ago). Around birthdays and forever family days, I try to jot down a few key quotes or moments that kind of sum up the people they are at that moment in time. Those things that they say or do that we think ‘we’ll never forget that!’ and then poof, something else takes the place of the last best tidbit.
Here are the highlights…
After hearing a crash from the dining room, I hear Liam say, “Awww mannnn, I shouldn’t have done that! Mom, we need some tape!” While he was raising the sails on his pirate ship, the mast broke. Translation: While he was playing with the blinds, the valance fell off the wall.
The question from Will’s teacher that always makes me gasp: “Do you want to know what Will told me today?” And this time he said: “Guess what, my mom has… farm muscles.” Letting out a big breath, I replied, “Ahh, yes I do!”
If Will starts to cry, it takes a lot to get through that emotion; deep breathing works best. When mad at me and in tears one day, Will refused to do deep breathing with me, “I’ll do it with Liam but not with you!” Liam’s little head spun toward Will. They locked eyes and Liam took the lead, calming Will down with one deep breath after another.
Less than a week after my first surgery (and after the above deep breathing exercise), Liam was doing somersaults on our bed and his foot landed about two inches from my incision. I started taking HUGE deep breaths, sucking nearly all the air from the room. Liam looked at me and asked, “Does deep breathing help, Mom? Next time stay out of my way.” I’ve since adopted many protective stances.
Liam is finding his els! Weam is Liam. Towo is towel.
Beautiful noises: the men in my life laughing… Bill’s boisterous laugh; Will’s giggles and Liam’s chortles. It’s an elated symphony when happening simultaneously.
The great fake out: Liam charging full-steam toward me with that grin – while I’m raising my arms in defense – stopping short, he looks up at me and says, “Which side hurts, Mom?” Then he gently kisses my arm on that side and jumps up on my lap on the opposite side. Knowing the strength behind that all-out run, I wouldn’t want to be the opponent facing Liam on the football field in 12 years.
Last Friday picking Liam up from school: “Hey Mom, is your arm OK now?” Me: “Yes, it feels pretty good now.” Liam: “Sooo… It’s OK now?” Me: “Yes, it feels good.” Liam: “Can I roll down the hill now?” Me, not following the string of conversation but going with it: “Sure you can…”
After Bill has persistently explained for days, perhaps weeks, that there is not a snow monster in our house, we finally realized that when Liam hears “There’s no monster!” he is processing it as “There, snow monster!”
Will has written a book about our family. There’s a different sized stick person on every page: each of us at different ages in our lives.
At school, Will drew a picture of his family and labeled each of us with our ages. I’m 33! And even when his teacher asked him if he was sure about that, he stuck with it! That’s my boy!!
Will: “Chemo and Kibo sound a lot alike.” Kibo is the Japanese lab on the space station.
The fascination with tape continues: Coming home from the 2nd surgery, I have new, big bandages on. Liam’s excited, “You have new tracks, Mom?” The wrinkles in the tape are train tracks.
Liam steaming toward me with Scotch tape. “I have more for you, Mom!” He also has a flat tan “Lego band-aid” in his other hand.
Will: “Mom, we’re going spelunking!” Translation: We need flashlights. We’re going to the basement in the dark.
Liam, at the breakfast table yelling at my laptop that's open on the counter, “GRANDMA, ARE YOU THERE?” Webcam and Skype: a beautiful combination.
New chemo start date: Friday, October 16th
(Original post date: 10/4/09)
Starting Friday, October 16th, I will go to MGH (Massachusetts General Hospital) for chemo every other week: 8 doses over 16 weeks. I've plugged the dates into the calendar on the LHH web site, although they may change once I'm "officially" scheduled at MGH. (So, I'm not sure if I will really have chemo on Christmas Day...)
I had intended to participate in two trials; however, one has been suspended and I'm not going to wait for it to restart. (In that trial, the first of November would be the earliest I could start chemo as it required a 5-week wait after surgery.)
The trial I will be in focuses on treatment after chemo and radiation. I'll have a 50-50 chance of receiving the standard 5-year medicine or the new drug over the same time frame.
How am I? I feel great. I've recovered well from the surgeries, which is why the oncologist is willing to start chemo earlier than the standard 4 - 6 weeks after surgery. I'm not sick. As I see it, I have a disease (hopefully very few cancer cells at this point!) that I need to control with the help of doctors and medicine.
How do I feel about chemo? I feel like a 777 having flown from Chicago to Hong Kong, now in a crazy holding pattern waiting to land. ...Getting started is the only way to get it done. I have several new friends, strong & formidable women, who have already walked this path. Individually and as a combined force, they have been a true inspiration.
Staying strong,
Linda
Starting Friday, October 16th, I will go to MGH (Massachusetts General Hospital) for chemo every other week: 8 doses over 16 weeks. I've plugged the dates into the calendar on the LHH web site, although they may change once I'm "officially" scheduled at MGH. (So, I'm not sure if I will really have chemo on Christmas Day...)
I had intended to participate in two trials; however, one has been suspended and I'm not going to wait for it to restart. (In that trial, the first of November would be the earliest I could start chemo as it required a 5-week wait after surgery.)
The trial I will be in focuses on treatment after chemo and radiation. I'll have a 50-50 chance of receiving the standard 5-year medicine or the new drug over the same time frame.
How am I? I feel great. I've recovered well from the surgeries, which is why the oncologist is willing to start chemo earlier than the standard 4 - 6 weeks after surgery. I'm not sick. As I see it, I have a disease (hopefully very few cancer cells at this point!) that I need to control with the help of doctors and medicine.
How do I feel about chemo? I feel like a 777 having flown from Chicago to Hong Kong, now in a crazy holding pattern waiting to land. ...Getting started is the only way to get it done. I have several new friends, strong & formidable women, who have already walked this path. Individually and as a combined force, they have been a true inspiration.
Staying strong,
Linda
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