I finally got to go back to choir practice tonight after my three month absence. It was a wonderful thing! I even got to stay for the whole rehearsal since Lauren is no longer nursing.
Now - to make it to church on Sunday......we are expecting another foot of snow tomorrow and Friday.
Wednesday, December 27, 2006
Monday, December 25, 2006
Merry Christmas!!!
To all who celebrate Christmas - wishing you a very merry one! I hope you all have been able to spend the day with the ones you love.As you can see in the picture - I got everything I wanted for Christmas this year.
Saturday, December 23, 2006
Christmas tasks
I spent the evening wrapping Santa presents in the basement. Afterwards I went upstairs and spent time drawing up medicines in syringes to adminster to Nathan.
For some reason - doing those tasks back to back really got to me.
It just isn't natural.
p.s. Believe me - I am grateful that Nathan is at home. I am happy to be filling those syringes at home instead of at The Ronald or not filling them at all at the hospital
For some reason - doing those tasks back to back really got to me.
It just isn't natural.
p.s. Believe me - I am grateful that Nathan is at home. I am happy to be filling those syringes at home instead of at The Ronald or not filling them at all at the hospital
Saturday, December 16, 2006
Killing time
I have nothing of interest to say because I am just sitting here waiting for Tuesday to get here. On Tuesday I get to get on a plane and go get my guys from NYC.
Meanwhile I have been doing mundane things like cleaning, surfing the net, listening to Christmas music, oh and taking care of the girls.
I have been selling a few baby items on Craigslist. Someone came over to buy a car seat base today. Julia and I were making cookies. The house was clean - the Christmas lights were on - Christmas music was playing the background and I was holding Lauren. I thought to myself that it must look like I am living some sort of ideal life. Me and my "two" children, nice house at Christmastime. Meanwhile - I am living a life no one would want to trade for. Well I guess I have to take that back - I know plenty of angel moms who would trade me....one more day with their child alive...
Still - it always reminds me not to assume things about people. Occasionally I will see a family I do not know - with a boy about Nathan's age and I think to myself "they have no idea how lucky they are" and then I realize that I have no idea what their life is like. Perhaps they have already lost a child.
Can't judge a book by its cover, I guess.
p.s. I actually DO judge a book by its cover...so that saying doesn't work for me. I totally glance at the cover first and make assumptions about the book...isn't that what the cover is for?
Meanwhile I have been doing mundane things like cleaning, surfing the net, listening to Christmas music, oh and taking care of the girls.
I have been selling a few baby items on Craigslist. Someone came over to buy a car seat base today. Julia and I were making cookies. The house was clean - the Christmas lights were on - Christmas music was playing the background and I was holding Lauren. I thought to myself that it must look like I am living some sort of ideal life. Me and my "two" children, nice house at Christmastime. Meanwhile - I am living a life no one would want to trade for. Well I guess I have to take that back - I know plenty of angel moms who would trade me....one more day with their child alive...
Still - it always reminds me not to assume things about people. Occasionally I will see a family I do not know - with a boy about Nathan's age and I think to myself "they have no idea how lucky they are" and then I realize that I have no idea what their life is like. Perhaps they have already lost a child.
Can't judge a book by its cover, I guess.
p.s. I actually DO judge a book by its cover...so that saying doesn't work for me. I totally glance at the cover first and make assumptions about the book...isn't that what the cover is for?
Sunday, December 10, 2006
Thursday, December 07, 2006
Instinct
I believe that if you are a parent your strongest instict is that to protect your child. What parent would not trade their own life for the life of their child?
That is why I just can't seem to figure out how a parent stops fighting for their child's life. If there is the slightest hope that your can save your child's life, how can you not at least try?
What about prolonging your child's life? Here is where the waters get muddy. Your child is terminally ill. To what lengths do you go to prolong your child's life? After all, does not each day bring a new day where a new teatment may be discovered? Isn't each day precious?
Several months ago I watched the documentary, "A Lion in the House". It followed families of children with childhood cancer. On more than one occasion in this documentary, the lengths to which parents went to prolong their child's life were questioned. They were questioned by doctors, nurses and even other family members. They were criticized for causing more pain and difficulty for thier children in their final days. One father took his daughter in to get chemotherapy on her final day against her mother's wishes. Another father fought the doctors who wanted him to sign a DNR on his son.
These other people clearly wanted to save the child from pain and suffering. These parents wanted to save thier child's life. I don't blame them. How can a parent let go? It is a lose/lose situation. There is no feeling good about any of it. When the child dies the parent wonders if they should have done more or they wonder if they should not have put the child through so much.
I don't know how I am going make the decisions I am soon to be faced with. We have already gone down a road we swore we wouldn't. In a last big effort to save Nathan's life we have ended up with a 6 week hospitalization and three months away from home. The doctors had no idea that this would happen and if we had known it would we would not have chosen to try this treatment.
Parents just shouldn't have to make such choices in life. It sucks the soul out of you.
That is why I just can't seem to figure out how a parent stops fighting for their child's life. If there is the slightest hope that your can save your child's life, how can you not at least try?
What about prolonging your child's life? Here is where the waters get muddy. Your child is terminally ill. To what lengths do you go to prolong your child's life? After all, does not each day bring a new day where a new teatment may be discovered? Isn't each day precious?
Several months ago I watched the documentary, "A Lion in the House". It followed families of children with childhood cancer. On more than one occasion in this documentary, the lengths to which parents went to prolong their child's life were questioned. They were questioned by doctors, nurses and even other family members. They were criticized for causing more pain and difficulty for thier children in their final days. One father took his daughter in to get chemotherapy on her final day against her mother's wishes. Another father fought the doctors who wanted him to sign a DNR on his son.
These other people clearly wanted to save the child from pain and suffering. These parents wanted to save thier child's life. I don't blame them. How can a parent let go? It is a lose/lose situation. There is no feeling good about any of it. When the child dies the parent wonders if they should have done more or they wonder if they should not have put the child through so much.
I don't know how I am going make the decisions I am soon to be faced with. We have already gone down a road we swore we wouldn't. In a last big effort to save Nathan's life we have ended up with a 6 week hospitalization and three months away from home. The doctors had no idea that this would happen and if we had known it would we would not have chosen to try this treatment.
Parents just shouldn't have to make such choices in life. It sucks the soul out of you.
Sick
I am sick. I am sick in all ways that a person can be sick. Physically, I have some kind of virus that Lauren gave me that involves a fever and a cold. Mentally, I am in a very bad place. Here I am over a thousand miles from where my son lays in a hospital bed. My stomach feels sick. I am sick with fear. I fear that he will not come home in 10 days as planned. I fear he will get an infection with no immune system to fight it. My heart is sick during this holiday season with the likelihood that this will be Nathan's last Christmas.
I am sick - and there is no cure.
I am sick - and there is no cure.
Thursday, November 30, 2006
Checking in
I have been neglecting the blog and I actually have too many things running through my mind that I want to put here. It is currently well past my bedtime and so I am afraid tonight will not be a good time to sort through them.
The girls and I arrived home yesterday after spending almost 3 months in NYC. It was like some kind of out of body experience for me today to be doing the suburban preschool drop-off thing in my minivan after months of walking the streets of NYC and spending every day in a medical facility. It has my head spinning.
More blogging to come soon....I hope.
The girls and I arrived home yesterday after spending almost 3 months in NYC. It was like some kind of out of body experience for me today to be doing the suburban preschool drop-off thing in my minivan after months of walking the streets of NYC and spending every day in a medical facility. It has my head spinning.
More blogging to come soon....I hope.
Wednesday, November 22, 2006
Day job
The day hospital at MSKCC has a number of "session assistants" on staff. These seem to all be recent college grads and it is an administrative job where they keep the flow of patients moving from the various places they need to be (fingerstick, exam rooms etc). I have a particular favorite session assistant because she goes out of her way to be helpful and you can tell she genuinely enjoys the kids. To get things done it this very busy clinic you have to be proactive and so I am always asking her to call the nurse to see if Nathan has orders for this or that. If you don't do that...sometimes you sit there for hours. Anyway, she always seems happy to help even if I feel like I am harassing her!
I recently found out that she is a singer/songwriter. I went "home" (the Ronald) and googled her and she has a new album out and a video. She has a very nice voice. I wish there was a little less synthesizer but I am sure that using the synthesizer is a cost-efficient way to go when you are funding an album.
Funny to learn what people's other lives are. I hope she find success in her music career.
I recently found out that she is a singer/songwriter. I went "home" (the Ronald) and googled her and she has a new album out and a video. She has a very nice voice. I wish there was a little less synthesizer but I am sure that using the synthesizer is a cost-efficient way to go when you are funding an album.
Funny to learn what people's other lives are. I hope she find success in her music career.
Friday, November 17, 2006
Tuesday, November 14, 2006
I just can't think of a good title for this entry
Those of you who know me would probably say that I am very even tempered and fairly calm. I don't get excited about things and I keep a cool head about things others might get flustered about.
So - you will know that things are not good when I tell you that I broke my computer tonight.
My computer is old and crappy. It was barely working. I would have had a new one if I was in Colorado but have been waiting until I got home. Tonight, it started giving me shit as I was trying to write an email to Nathan's doctor asking him to let Nathan out of the hospital even though it is against all the policies and procedures they have.
So - I gave it a good thump with my fist.
It still didn't behave itself - it froze a little and then was not letting me do what I wanted.
I pounded on it a little more with my fist and now it is toast.
I truly had to restrain myself from putting it on the floor and jumping on it. The thought of wrecking the computer makes me smile and feel giddy. That computer has been such a DOG and pissed me off so many times and I am so pissed off about so many other things right now that I am itching to pound the thing. If it didn't have its hard drive in it (which I am hoping to later recover some files from) I would totally beat it up and enjoy every minute of it.
Oh - and there is also the problem of the six year old in the hospital bed next to me watching me pound it and me setting a very bad example for him.
So - now what do you think of me?
I keep telling people - one of these days I am going to crack under the strain of it all. It's not happening yet but every day it seems more feasible.
edited to say that I am posting this from Luke's computer - which is having a sticky "E key" lately but is otherwise an obedient computer and I promise I will not abuse it
So - you will know that things are not good when I tell you that I broke my computer tonight.
My computer is old and crappy. It was barely working. I would have had a new one if I was in Colorado but have been waiting until I got home. Tonight, it started giving me shit as I was trying to write an email to Nathan's doctor asking him to let Nathan out of the hospital even though it is against all the policies and procedures they have.
So - I gave it a good thump with my fist.
It still didn't behave itself - it froze a little and then was not letting me do what I wanted.
I pounded on it a little more with my fist and now it is toast.
I truly had to restrain myself from putting it on the floor and jumping on it. The thought of wrecking the computer makes me smile and feel giddy. That computer has been such a DOG and pissed me off so many times and I am so pissed off about so many other things right now that I am itching to pound the thing. If it didn't have its hard drive in it (which I am hoping to later recover some files from) I would totally beat it up and enjoy every minute of it.
Oh - and there is also the problem of the six year old in the hospital bed next to me watching me pound it and me setting a very bad example for him.
So - now what do you think of me?
I keep telling people - one of these days I am going to crack under the strain of it all. It's not happening yet but every day it seems more feasible.
edited to say that I am posting this from Luke's computer - which is having a sticky "E key" lately but is otherwise an obedient computer and I promise I will not abuse it
Saturday, November 11, 2006
It's in the details
Nathan is currently inpatient for fever and neutropenia. We have spent time hospitalized in 4 different hospitals and our current hospital, has the best peds floor...hands down. The unit is about 3 years old and you can tell they had a lot of input from both parents/caregivers and nurses. Some of these details are very small but can make a big difference in parent and patient happiness.
Here are the elements that make it great.
1. Fully dimming night lights low on the wall by the parent bed/chair. You can actually read or use the computer when your child is asleep instead of sitting on the floor outside the bathroom door with a crack of light coming through.
2. LAN ports all over the room to get online with. Connecting with the outside world keeps parents sane and also lets the patients get online to help entertain themselves.
3. A locking cabinet for the family to use in the room. It is good to have somewhere to lock up the laptop if you are heading to the playroom.
4. Flat panel TVs for each bed with a DVD player and FULL cable. The shared rooms at our home hospital have one TV for two patients to share. How the heck is that supposed to work when you have kids aged from 1 - 18 and parents having to decide what to watch.
5. 2 window blinds - 1 to block out light and the other to let it some through. It sucks to sit in blackness during the middle of the day because your child wants the blinds closed. I find I am able to pull up the darkening one a little and get a small amount of daylight. I usually do this while he is not looking, in small increments, so he doesn't notice.
6. Parent menus. One of the hardest thing for a parent to do is find a way to feed themselves when they are with a child at the hospital. Here, there is a menu for the parents and when you call to order your child food you can order some for yourself as well.
7. A room door with full panes of glass in it that has blinds for all glassed areas. I can't tell you how much I hate being stuck in a hospital room with a closed windowless door. I like being able to see people walk around out in the halls. I feel much less claustrophobic. However, I have been in rooms where there are no blinds on the door or only one of the panes has a blind and at night so much light pours in that you can never really get into a good sleep.
8. Thermometers at every bed. I can't tell you how many hospitals or clinics I have been in where there is a never ending search for a tympanic thermometer. I was in the PICU of a very good hospital and they had 2 thermometers for the whole ward. I get so sick of watching the nurses or techs scramble for them.
9. Window for every bed. In shared rooms if there is only one window the curtain gives each patient half a window. Other rooms have at least one window per patient. There is nothing worse that sitting in a shared room on the "door side" of the room with the curtain drawn and the window on the other side of the curtain.
10. Ability to use cell phones on the ward. I know cell phones can interfere with some patient monitoring equipment but whatever they use here they do not have a problem with cell phone use and I can actually call my husband for free whenever I want.
11. Non-fluorescent wall light. After a while the fluorescent room lights can drive you mad. There is a regular, incandescent light on the wall that is bright enough to light the room.
12. Showers in the parent bathrooms. The ability to get clean without leaving the hospital is a very nice perk.
13. Washer and dryer on the unit for parent use. Many parents are basically living in the hospital so they can actually do their own laundry while they stay with their child.
14. Parent kitchen. The kitchen has a fridge and microwave for parents and a drink dispenser and most importantly a coffee/hot drink machine. No urn of coffee that has been burning all day. No feeling guilty because you have to ask the nurse to bring YOU a drink from the secret juice supply. There is even a small table for you to eat at if you wish.
15. Parent lounge. A no-kids room with comfortable chairs and a window to get away and clear your mind for a few minutes.
16. Enough pillows and blankets to go around that the parent can actually have some to sleep with. I have slept many a night without a pillow and blanket at hospitals. They never seem to have enough and it is such an easy way to make a parent comfortable.
17. Chair/bed that is actually comfortable and doesn't separate while you are trying to move around on it. What more can I say about that?
18. Room chair with footstool. They actually have a little footstool for the non bed/chair chair. When sitting in the hospital room all day it is nice to be able to put your feet up after a while.
19. Playroom volunteers who will come and sit with your child so you can leave the hospital or even just take a break from your child for an hour.
20. Room doors that open and close quietly. I have been in so many rooms that the doors make a racket when you open and close them. Forget sleeping through a vitals check in the middle of the night.
Here are the elements that make it great.
1. Fully dimming night lights low on the wall by the parent bed/chair. You can actually read or use the computer when your child is asleep instead of sitting on the floor outside the bathroom door with a crack of light coming through.
2. LAN ports all over the room to get online with. Connecting with the outside world keeps parents sane and also lets the patients get online to help entertain themselves.
3. A locking cabinet for the family to use in the room. It is good to have somewhere to lock up the laptop if you are heading to the playroom.
4. Flat panel TVs for each bed with a DVD player and FULL cable. The shared rooms at our home hospital have one TV for two patients to share. How the heck is that supposed to work when you have kids aged from 1 - 18 and parents having to decide what to watch.
5. 2 window blinds - 1 to block out light and the other to let it some through. It sucks to sit in blackness during the middle of the day because your child wants the blinds closed. I find I am able to pull up the darkening one a little and get a small amount of daylight. I usually do this while he is not looking, in small increments, so he doesn't notice.
6. Parent menus. One of the hardest thing for a parent to do is find a way to feed themselves when they are with a child at the hospital. Here, there is a menu for the parents and when you call to order your child food you can order some for yourself as well.
7. A room door with full panes of glass in it that has blinds for all glassed areas. I can't tell you how much I hate being stuck in a hospital room with a closed windowless door. I like being able to see people walk around out in the halls. I feel much less claustrophobic. However, I have been in rooms where there are no blinds on the door or only one of the panes has a blind and at night so much light pours in that you can never really get into a good sleep.
8. Thermometers at every bed. I can't tell you how many hospitals or clinics I have been in where there is a never ending search for a tympanic thermometer. I was in the PICU of a very good hospital and they had 2 thermometers for the whole ward. I get so sick of watching the nurses or techs scramble for them.
9. Window for every bed. In shared rooms if there is only one window the curtain gives each patient half a window. Other rooms have at least one window per patient. There is nothing worse that sitting in a shared room on the "door side" of the room with the curtain drawn and the window on the other side of the curtain.
10. Ability to use cell phones on the ward. I know cell phones can interfere with some patient monitoring equipment but whatever they use here they do not have a problem with cell phone use and I can actually call my husband for free whenever I want.
11. Non-fluorescent wall light. After a while the fluorescent room lights can drive you mad. There is a regular, incandescent light on the wall that is bright enough to light the room.
12. Showers in the parent bathrooms. The ability to get clean without leaving the hospital is a very nice perk.
13. Washer and dryer on the unit for parent use. Many parents are basically living in the hospital so they can actually do their own laundry while they stay with their child.
14. Parent kitchen. The kitchen has a fridge and microwave for parents and a drink dispenser and most importantly a coffee/hot drink machine. No urn of coffee that has been burning all day. No feeling guilty because you have to ask the nurse to bring YOU a drink from the secret juice supply. There is even a small table for you to eat at if you wish.
15. Parent lounge. A no-kids room with comfortable chairs and a window to get away and clear your mind for a few minutes.
16. Enough pillows and blankets to go around that the parent can actually have some to sleep with. I have slept many a night without a pillow and blanket at hospitals. They never seem to have enough and it is such an easy way to make a parent comfortable.
17. Chair/bed that is actually comfortable and doesn't separate while you are trying to move around on it. What more can I say about that?
18. Room chair with footstool. They actually have a little footstool for the non bed/chair chair. When sitting in the hospital room all day it is nice to be able to put your feet up after a while.
19. Playroom volunteers who will come and sit with your child so you can leave the hospital or even just take a break from your child for an hour.
20. Room doors that open and close quietly. I have been in so many rooms that the doors make a racket when you open and close them. Forget sleeping through a vitals check in the middle of the night.
Friday, November 10, 2006
Nice views
First off - a view of Nathan who seems to be feeling alot better this morning.
Then - some views out the hospital room window. We are spoiled by the views out the hospital room windows in Colorado Springs but this view isn't half bad.
Then - some views out the hospital room window. We are spoiled by the views out the hospital room windows in Colorado Springs but this view isn't half bad.
Rare allergy
The other morning I came to the hospital and Nathan was just waking up. He suggested I open the blinds. I opened them but it was too bright for him.
He said to me: " Mommy, in the mornings my eyes are just allergic to light"
I guess he is kind of right.
He said to me: " Mommy, in the mornings my eyes are just allergic to light"
I guess he is kind of right.
Wednesday, November 01, 2006
Walking - the video proof
I previously mentioned that Lauren is walking now. I finally caught her on film with my camera phone today. That's why the quality is so poor.
Fumbling in the dark
So - here at the Ronald we have two twin beds pushed together and one end table which is next to Luke's bed. This means my glasses and other things I am using in bed are put on the floor when I go to sleep. This also means I have no clock next to me.The other night Lauren woke up and I needed to find out what time it was so I could see if it was too early to nurse her. I reached down off the bed groping for my glasses.
Instead of my glasses, I produced the lovely pair seen in the picture, If it hadn't been 4 in the morning I might have laughed.
Friday, October 27, 2006
Walking
I have failed to mention that Lauren has started walking. She will take off and walk a few feet and then sit down. It is by no means her primary mode of getting around but it will be soon. She will be a year old in a few weeks. Eek! my last baby is not going to be a baby for too long.
This reminds me...
I was having a talk with Nathan about more serious types of things and I asked him if he was worried about anything. He said that there was one thing he had been thinking about. He said that if I had another baby he was worried that there would not be a bedroom for that baby. I told him not to worry because his Daddy and I were not planning on having any more babies. That was not enough for him. He told me sometimes it could happen anyway. I told him not to worry - that doesn't happen very often to people (little white lie). Geez.
And no - I am not pregnant. Not even possible.
This reminds me...
I was having a talk with Nathan about more serious types of things and I asked him if he was worried about anything. He said that there was one thing he had been thinking about. He said that if I had another baby he was worried that there would not be a bedroom for that baby. I told him not to worry because his Daddy and I were not planning on having any more babies. That was not enough for him. He told me sometimes it could happen anyway. I told him not to worry - that doesn't happen very often to people (little white lie). Geez.
And no - I am not pregnant. Not even possible.
TV free life
Normally I watch alot of TV. That is what I do with my evenings. The new season started in September and so there are alot of shows to watch.
The first night we were in the Ronald McDonald House I tried to watch TV on a little handheld TV. The reception and sound were too crummy. The next night I tried to have the TV on quietly but it was too distracting for Lauren and Nathan to sleep with it on.
So - I haven't really watched any TV (beside hours and hours of Boomerang and Cartoon Network) since before Labor Day.
I don't miss it nearly as much as I thought I would. I wonder about some of the shows. I know my TIVO will contain a few episodes (but not all of the weeks I have missed).
I DO miss having a life after 9:00 pm. Sitting in a dark room reading a book with a booklight or using my computer in the dark is not my idea of fun.
That said - I fully intend to go back to my TV watching when I am back home again.
The first night we were in the Ronald McDonald House I tried to watch TV on a little handheld TV. The reception and sound were too crummy. The next night I tried to have the TV on quietly but it was too distracting for Lauren and Nathan to sleep with it on.
So - I haven't really watched any TV (beside hours and hours of Boomerang and Cartoon Network) since before Labor Day.
I don't miss it nearly as much as I thought I would. I wonder about some of the shows. I know my TIVO will contain a few episodes (but not all of the weeks I have missed).
I DO miss having a life after 9:00 pm. Sitting in a dark room reading a book with a booklight or using my computer in the dark is not my idea of fun.
That said - I fully intend to go back to my TV watching when I am back home again.
If this is 49, what does 50 look like?
I am blogging a dream....more for my benefit than my readers I think.
I walk into a hotel with some wealthy person. The people in the hotel apologize profusely that room 50 is not available but take us instead to room 49. We walk in and it is palatial. The floor and walls are marble with the ceiling several stories high. The main room is the size of a football field. There are stairs everywhere. One stairway leads past a very fancy swimming pool. We keep touring until we find we have exited to the street. We are in NYC and we had left our Maclaren stroller while we have been inside. Someone has taken ff the wheels and is replacing them with plastic wheels the same blue color as the stroller. There is apparently quite a bustling black market for Maclaren stroller wheels. We catch him in the act and he puts the wheels back.
The dream ends there because I am awoken by a crying baby at 4:30 am.
I walk into a hotel with some wealthy person. The people in the hotel apologize profusely that room 50 is not available but take us instead to room 49. We walk in and it is palatial. The floor and walls are marble with the ceiling several stories high. The main room is the size of a football field. There are stairs everywhere. One stairway leads past a very fancy swimming pool. We keep touring until we find we have exited to the street. We are in NYC and we had left our Maclaren stroller while we have been inside. Someone has taken ff the wheels and is replacing them with plastic wheels the same blue color as the stroller. There is apparently quite a bustling black market for Maclaren stroller wheels. We catch him in the act and he puts the wheels back.
The dream ends there because I am awoken by a crying baby at 4:30 am.
Thursday, October 19, 2006
Anesthesia Joke
Nathan: I know why it is called propofol !
Me: Why?
Nathan: because when they give it to you it makes you FALL asleep and then you wake up and try to walk and you FALL down.
I had Nathan tell the anesthesiologist who said it was her first propofol joke. It is cuter coming out of Nathan because he says "purplefall" instead of "pro.poe.fall"
Me: Why?
Nathan: because when they give it to you it makes you FALL asleep and then you wake up and try to walk and you FALL down.
I had Nathan tell the anesthesiologist who said it was her first propofol joke. It is cuter coming out of Nathan because he says "purplefall" instead of "pro.poe.fall"
Tuesday, October 17, 2006
Gravity
How does one explain the concept of gravity to a child?
Nathan got platelets on Sunday. Here in NY they do not use IV pumps for platelets since they do not want to lose any of them. They actually used that IV rack hanging on a track on the ceiling. I have never seen one of those used in all these years.
Nathan wanted to know how the IV could work without a pump so it was time for a lesson on gravity.
I'm starting to get sick of all thing medical (no pun intended). I guess living at the Ronald McDonald House doesn't let me get away from it like I do at home when I can fell that I have a normal life from time to time.
Nathan got platelets on Sunday. Here in NY they do not use IV pumps for platelets since they do not want to lose any of them. They actually used that IV rack hanging on a track on the ceiling. I have never seen one of those used in all these years.
Nathan wanted to know how the IV could work without a pump so it was time for a lesson on gravity.
I'm starting to get sick of all thing medical (no pun intended). I guess living at the Ronald McDonald House doesn't let me get away from it like I do at home when I can fell that I have a normal life from time to time.
Tuesday, October 10, 2006
Goodbye Nevaeh
Luke and Julia got home from New York this afternoon. He told me I had a message from a fellow NB mom to call her. She and I have been chatting now again since both of our children have relapsed and we live in the same town.
A few weeks ago she told me they had decided not to pursue further treatment. I asked her what led her to be able to make that decision because it is something I have been thinking about for the future. She was very open and shared with me all the reasons.
So - I am still in NYC and so I went online to view today's paper and was dismayed to see Neveah's obituary. When I heard I had a message I suspected it meant she had died but at the same time I wasn't expecting it. I was far more upset than I had anticipated. Her funeral is tomorrow and so I will wait until Thursday to call. I haven't a clue what I will say.
I wish I could be at the funeral and give her mom a hug.
I have never been to a funeral. Can you believe that? I have now missed two funerals that I thought I would attend if the day occurred. I fear that my very first funeral will be that of my child...in fact it almost seems destined to be that way...
To close - here is her obituary
Friday, October 06, 2006
Reality sets in
I am starting to get a little depressed about our long haul in NYC. I mean, we had a days notice to get here and I had a return ticket in 10 days. Now I am here at least through the last week in October and if things go well - into November.
It is great that Luke and Julia are here. It will be hard to see them leave. Luke was able to pack more clothes for me and Nathan but I hadn't quite looked at the calendar to see that I could be here in November. I guess I will need more than 3 long-sleeved shirts.
I got some retail therapy today at an Aerosoles store at least. Gap is in my future as well. Lauren has so nice new duds courtesy of Baby Gap. I would not have spent that much on her (or me) at home but I am feeling entitled. Plus there is that whole thing of the more money you are spending the easier it is to keep spending.
I feel like life is going on without me at home and that I am in suspended animation. How will I ever get back into the swing of things? I already feel like some kind of alien among all the humans and when I get back it is really going to be exaggerated. If I do get home the first week of November it will most likely be for only one week. Part of me thinks that will be harder than staying. It helps if I try not to think of home.
So - do me a favor and relish the school drop-off and grocery shopping in a store with normal size carts for me next week.
It is great that Luke and Julia are here. It will be hard to see them leave. Luke was able to pack more clothes for me and Nathan but I hadn't quite looked at the calendar to see that I could be here in November. I guess I will need more than 3 long-sleeved shirts.
I got some retail therapy today at an Aerosoles store at least. Gap is in my future as well. Lauren has so nice new duds courtesy of Baby Gap. I would not have spent that much on her (or me) at home but I am feeling entitled. Plus there is that whole thing of the more money you are spending the easier it is to keep spending.
I feel like life is going on without me at home and that I am in suspended animation. How will I ever get back into the swing of things? I already feel like some kind of alien among all the humans and when I get back it is really going to be exaggerated. If I do get home the first week of November it will most likely be for only one week. Part of me thinks that will be harder than staying. It helps if I try not to think of home.
So - do me a favor and relish the school drop-off and grocery shopping in a store with normal size carts for me next week.
Saturday, September 30, 2006
Up on the roof
These pictures were taken by my cousin's not-husband on the roof of their home in Brooklyn.
Nathan thoght it was very cool up there.
Nathan thoght it was very cool up there.
Thursday, September 28, 2006
In the trenches
So - Nathan has been in the hospital for three nights. Two of my friends are also in with their children. I know them from "way back" which is never a good thing in the cancer world. They haven't escaped this life yet either.
H is the same age as Nathan and has been fighting for 4 years. They slowly chipped away at his disease until a few months ago he was "clear" for the first time since diagnosis. Eight weeks later scans showed the cancer was back. He had a round of chemo and then got a fever and his blood counts haven't come back up and they have been in the hospital for 2 weeks. He is going to get some stem cells on Monday. His mom, G, is great. When we first came here she introduced herself to me and then took me on a tour and gave me the lowdown. They have an apartment in New Jersey because they mostly live here and occasionally get to visit home and Dad. Her mom is here with her constantly to help (thank goodness!). H is an only child. They were trying for #2 when H was diagnosed. G says she can't bring herself to have another because they have been in this fight the whole time and she is not sure how she will manage being pregnant and caring for H. H will probably get this same treatment as Nathan. G was excited to see the trial start. I lent her my copy of the study protocol for some light reading.
J is a teenager. He was doing the cold antibodies at the same time as Nathan back in 2003. His Dad, D is his primary caregiver while his wife and daughter are at home. J and D also have primarily lived in NY for three + years. D is so friendly and caring. D &J are always going on adventures. D took Nathan and I out one Saturday that we were here in 2004 and we went to Fire Island and some other places. Basically - we just escaped the city and the drudgery for awhile and it was so wonderful. J has never been clear. They have made progress at times and then things have gotten worse again. A few weeks ago they were actually at home. The doctors called J to come to NY to start the hot antibody study. D and J had been waiting for this trial. It has great promise and was the only thing left for them to try. J was scanned and they found him to be ineligible for the trial. They are still in NY doing some other chemos but are not given any hope for much time left.
So - Nathan just did this trial J was waiting for. D has been telling me how great it is that it is Nathan doing this first. Meanwhile - it should have been J and the trial basically just didn't get going soon enough for J. He keeps asking me if I am just so happy Nathan got the treatment. Of course I am but how can I look him in the eye and be happy? He came in to talk last evening while Nathan was sleeping. He has been told once again that they will do one more round of chemo and then they should go home. Being "sent home" is something all cancer parents fear. I can tell D just doesn't want to go home. He talked of going off on more adventures rather than going home. His wife is at home and is angry and her anger is directed at D. She has taken very little part in this whole medical journey and has been the breadwinner. The separation between them is total and complete. When I look in D's eyes I can see the pain and anguish of this whole situation. I worry about him. All the while he is asking how he can help. He is chatting and laughing but his eyes can not hide the pain.
I am hoping to climb on out of here in a day or two - but I cannot really leave this place or the people in it behind. My heart is heavy.
H is the same age as Nathan and has been fighting for 4 years. They slowly chipped away at his disease until a few months ago he was "clear" for the first time since diagnosis. Eight weeks later scans showed the cancer was back. He had a round of chemo and then got a fever and his blood counts haven't come back up and they have been in the hospital for 2 weeks. He is going to get some stem cells on Monday. His mom, G, is great. When we first came here she introduced herself to me and then took me on a tour and gave me the lowdown. They have an apartment in New Jersey because they mostly live here and occasionally get to visit home and Dad. Her mom is here with her constantly to help (thank goodness!). H is an only child. They were trying for #2 when H was diagnosed. G says she can't bring herself to have another because they have been in this fight the whole time and she is not sure how she will manage being pregnant and caring for H. H will probably get this same treatment as Nathan. G was excited to see the trial start. I lent her my copy of the study protocol for some light reading.
J is a teenager. He was doing the cold antibodies at the same time as Nathan back in 2003. His Dad, D is his primary caregiver while his wife and daughter are at home. J and D also have primarily lived in NY for three + years. D is so friendly and caring. D &J are always going on adventures. D took Nathan and I out one Saturday that we were here in 2004 and we went to Fire Island and some other places. Basically - we just escaped the city and the drudgery for awhile and it was so wonderful. J has never been clear. They have made progress at times and then things have gotten worse again. A few weeks ago they were actually at home. The doctors called J to come to NY to start the hot antibody study. D and J had been waiting for this trial. It has great promise and was the only thing left for them to try. J was scanned and they found him to be ineligible for the trial. They are still in NY doing some other chemos but are not given any hope for much time left.
So - Nathan just did this trial J was waiting for. D has been telling me how great it is that it is Nathan doing this first. Meanwhile - it should have been J and the trial basically just didn't get going soon enough for J. He keeps asking me if I am just so happy Nathan got the treatment. Of course I am but how can I look him in the eye and be happy? He came in to talk last evening while Nathan was sleeping. He has been told once again that they will do one more round of chemo and then they should go home. Being "sent home" is something all cancer parents fear. I can tell D just doesn't want to go home. He talked of going off on more adventures rather than going home. His wife is at home and is angry and her anger is directed at D. She has taken very little part in this whole medical journey and has been the breadwinner. The separation between them is total and complete. When I look in D's eyes I can see the pain and anguish of this whole situation. I worry about him. All the while he is asking how he can help. He is chatting and laughing but his eyes can not hide the pain.
I am hoping to climb on out of here in a day or two - but I cannot really leave this place or the people in it behind. My heart is heavy.
Tuesday, September 26, 2006
Torn in two
I knew when we decided to have another baby there could be times I would have to choose between caring for one child over another.
At the time we decided to have Lauren and she was conceived Nathan had not yet relapsed. We knew things would be difficult if he did.
We were pretty lucky that even though he relapsed twice we could juggle what we needed to juggle.
This is the first time I must choose between Nathan and Lauren. Nathan in inpatient and visitors under 12 are not allowed on the floor. So - I can either be with Nathan or with Lauren but not with both.
Today I was mostly with Nathan except for when I needed to nurse Lauren.
Near the end of the day when I was holding her and had to give her back to Kathy ( my mother-in-law) she had a death grip on my arm and cried when I pried her fingers off. It was enough to break my heart. She screamed the whole time I took a shower tonight back at the Ronald McDonald House. I need a disclaimer here that this is not a reflection on Kathy - but merely *not mommy*.
I guess it could be worse. It doesn't matter so much to Nathan who is caring for him. If he cried when I left him that would be torture.
However - I am his primary medical caregiver and he is about to undergo an untested medical treatment and I feel the need to be with him and working closely with the doctors and nurses.
So - this is how it is.
It is hard.
At the time we decided to have Lauren and she was conceived Nathan had not yet relapsed. We knew things would be difficult if he did.
We were pretty lucky that even though he relapsed twice we could juggle what we needed to juggle.
This is the first time I must choose between Nathan and Lauren. Nathan in inpatient and visitors under 12 are not allowed on the floor. So - I can either be with Nathan or with Lauren but not with both.
Today I was mostly with Nathan except for when I needed to nurse Lauren.
Near the end of the day when I was holding her and had to give her back to Kathy ( my mother-in-law) she had a death grip on my arm and cried when I pried her fingers off. It was enough to break my heart. She screamed the whole time I took a shower tonight back at the Ronald McDonald House. I need a disclaimer here that this is not a reflection on Kathy - but merely *not mommy*.
I guess it could be worse. It doesn't matter so much to Nathan who is caring for him. If he cried when I left him that would be torture.
However - I am his primary medical caregiver and he is about to undergo an untested medical treatment and I feel the need to be with him and working closely with the doctors and nurses.
So - this is how it is.
It is hard.
Friday, September 22, 2006
Excited?
So - most of you know that I am in NYC with Nathan awaiting a new trial. Nathan will be the first patient on this trial.
I have been told it has promise.
I saw one of the nurse practitioners briefly and she asked if I was excited. She then saw my face and realized that was not the right emotion and I explained I was very happy Nathan was getting this treatment.
Later we saw the peds fellow and when he learned Nathan was #1 he got excited and asked what did Nathan want for being #1 - a trip to the moon? He obviously also thought that this is very exciting.
So - I guess it is a good thing that the medical professionals are excited about this trial. I am starting to realize what high hopes they have. His doctor even mumbled something about "if Nathan does not have a complete response after the first round but can't continue....." Really? Do they think it could be THAT effective?
I have no expectations. I'll take no progression. I hope he can have more than one round. Those are my hopes right now.
I have been told it has promise.
I saw one of the nurse practitioners briefly and she asked if I was excited. She then saw my face and realized that was not the right emotion and I explained I was very happy Nathan was getting this treatment.
Later we saw the peds fellow and when he learned Nathan was #1 he got excited and asked what did Nathan want for being #1 - a trip to the moon? He obviously also thought that this is very exciting.
So - I guess it is a good thing that the medical professionals are excited about this trial. I am starting to realize what high hopes they have. His doctor even mumbled something about "if Nathan does not have a complete response after the first round but can't continue....." Really? Do they think it could be THAT effective?
I have no expectations. I'll take no progression. I hope he can have more than one round. Those are my hopes right now.
Tuesday, September 19, 2006
Sunday, September 17, 2006
A normal week?
I am on the cusp of what could be a "normal" week. Nathan is slated to go to school all week. Julia will be at afternoon preschool Mon - Thurs. This is my first taste of what my life could be like with a 6 year old, 4 year old and 10 month old.
So - of course it can't all be normal. There will be a quick doctors visit that will cause Nathan to miss about a half hour of school on the the days this week. We may also learn when we are returning to NY and have to get transportation, lodging and personnel worked out.
Still - I am looking forward to it. Shall we see what steps in to change it?
So - of course it can't all be normal. There will be a quick doctors visit that will cause Nathan to miss about a half hour of school on the the days this week. We may also learn when we are returning to NY and have to get transportation, lodging and personnel worked out.
Still - I am looking forward to it. Shall we see what steps in to change it?
Tuesday, September 12, 2006
Twenty-one
Just some NYC strangeness.....
This morning I went for Dunkin Donuts. I witnessed a streetsweeper driving aggressively through the traffic - swerving in and out of traffic - very odd.
On the way home I was out of place as one of the few people on the street not dressed in a micro-mini school uniform skirt. I don't get the whole school uniform tiny skirt thing - aren't they supposed to be modest?
Later in the afternoon while in Times Square attempting to walk to a restaurant we had to squeeze by a crowd of people on the sidewalk screaming at the MTV TRL broadcast in the building next to us for Justin Timberlake.
Lastly - while spending three hours in the playroom of the hospital today I met a child with the weirdest name ever. There was a little girl whose name was twenty-one. I kid you not.
This morning I went for Dunkin Donuts. I witnessed a streetsweeper driving aggressively through the traffic - swerving in and out of traffic - very odd.
On the way home I was out of place as one of the few people on the street not dressed in a micro-mini school uniform skirt. I don't get the whole school uniform tiny skirt thing - aren't they supposed to be modest?
Later in the afternoon while in Times Square attempting to walk to a restaurant we had to squeeze by a crowd of people on the sidewalk screaming at the MTV TRL broadcast in the building next to us for Justin Timberlake.
Lastly - while spending three hours in the playroom of the hospital today I met a child with the weirdest name ever. There was a little girl whose name was twenty-one. I kid you not.
Monday, September 11, 2006
Unsettled
I am having this urge to just go home. I don't feel good about being here. I want to go home and pretend this all isn't happening.
Those of you who know me well - know that I am not that type of person. I am a realist through and through.
I have been having weird thoughts. I passed a window of a very expensive chidren's boutique today and had this overwhelming desire for Julia to have the very expensive shoes in the window. I have no idea why.
It is so hard being here but having no "real" plan. Thank goodness we are taking Nathan over to the hospital tomorrow to see his doctor - hanging out here with all of this over our heads is unsettling.
Those of you who know me well - know that I am not that type of person. I am a realist through and through.
I have been having weird thoughts. I passed a window of a very expensive chidren's boutique today and had this overwhelming desire for Julia to have the very expensive shoes in the window. I have no idea why.
It is so hard being here but having no "real" plan. Thank goodness we are taking Nathan over to the hospital tomorrow to see his doctor - hanging out here with all of this over our heads is unsettling.
Thursday, September 07, 2006
In the city
Four out of the five of us are now in NYC.
I will skip talking about all the medical stuff - you can find that on Nathan's page. All that stuff just makes me feel ill.
So - we are staying the a very beautiful apartment of friends in the city. The have two apartments and the lower one is office space and spare rooms. It is so wonderful to be here and not at the Ronald McDonald House.
I find it disorienting and surreal to wake up in Colorado drive to the airport, and then find myself walking the city streets of Manhattan all in the same day. It couldn't be more different a world.
Here is a picture I took out of one of the bedroom windows. It is looking across Central Park.
This picture is also taken out of the same window at a different angle. There was some sort of photo shoot taking place on the rooftop.
I will skip talking about all the medical stuff - you can find that on Nathan's page. All that stuff just makes me feel ill.
So - we are staying the a very beautiful apartment of friends in the city. The have two apartments and the lower one is office space and spare rooms. It is so wonderful to be here and not at the Ronald McDonald House.
I find it disorienting and surreal to wake up in Colorado drive to the airport, and then find myself walking the city streets of Manhattan all in the same day. It couldn't be more different a world.
Here is a picture I took out of one of the bedroom windows. It is looking across Central Park.
This picture is also taken out of the same window at a different angle. There was some sort of photo shoot taking place on the rooftop.
Sunday, September 03, 2006
Up and down
Not only my life - but also my internet. The problem started on August 1 - the day our internet provider was officially bought out by another cable company.
So - while there is a window of access this morning I thought I should post something here.
How about some pictures of my little 9.5 month old sweetheart? She was at the doctor on Friday and she only weighs 15 pounds 6 ounces (less than 5th percentile). Her head and height are aroung the 50th percentile - so she is pretty slim. No worries though - she is breastfed and the charts are for formula-fed babies. She is also doing everything she should be.
I just took these pictures - too much flash....
So - while there is a window of access this morning I thought I should post something here.
How about some pictures of my little 9.5 month old sweetheart? She was at the doctor on Friday and she only weighs 15 pounds 6 ounces (less than 5th percentile). Her head and height are aroung the 50th percentile - so she is pretty slim. No worries though - she is breastfed and the charts are for formula-fed babies. She is also doing everything she should be.
I just took these pictures - too much flash....
Tuesday, August 29, 2006
Monday, August 28, 2006
Is this goodbye?
My car broke today while I was driving Nathan home from his echo/EKG. More precisely it broke down right after we exited Dairy Queen on the way home. So - at least I got my blizzard first. My dad came to get us and made a comment about this being just another day in the life of Susan. I really do need to play the lottery - perhaps I am due for some good luck.I think this may be the last straw for the Beretta. It was a college graduation present from my parents in 1994. It only has 93,000 miles on it though. However, it is not even worth a couple of hundred dollars so there is a limit to what we are willing to put into it.
So - it has been towed to the shop and we will see how much it will cost to fix it. I will be a little sad if we get rid of it. I've had that car since before I even met Luke.
Sunday, August 27, 2006
Sobering stuff
I wanted to post - but my thought are all over the place.
We are waiting to hear when we will go to New York for Nathan's scans. This time next week we could be there but as of right now we haven't a clue. I hate how last-minute these things are.
There are three senarios for what will happen.
1. Nathan's scans are the same worse than at relapse. They have nothing to offer him. We come home. Mild chemo?, Hopspice?
2. Nathan's scans are improved. They have a trial for him but he needs to wait for an opening so we come home for a week or two and go back.
3. Nathan's scans are improved. He starts a trial right away. We are there for many weeks.
So - when will come home? What will we be doing? All unknown.
There is another child with relapsed neuroblastoma at Nathan's clinic. She is friends with my hairdresser and we talk on the phone from time to time. I talked to her yesterday. They have decided to stop treatment on her daughter (who is five). She has called hospice and been to the funeral home. We talked about how she came to the decision and was actually able to make it. Her answer was that is was prayer. For now, her daughter feels great and is able to run around and ride her bike. They think she may make it to Halloween but doubt she'll make it to Thanksgiving.
I just keep hoping that it is a long time before we are where she is....
We are waiting to hear when we will go to New York for Nathan's scans. This time next week we could be there but as of right now we haven't a clue. I hate how last-minute these things are.
There are three senarios for what will happen.
1. Nathan's scans are the same worse than at relapse. They have nothing to offer him. We come home. Mild chemo?, Hopspice?
2. Nathan's scans are improved. They have a trial for him but he needs to wait for an opening so we come home for a week or two and go back.
3. Nathan's scans are improved. He starts a trial right away. We are there for many weeks.
So - when will come home? What will we be doing? All unknown.
There is another child with relapsed neuroblastoma at Nathan's clinic. She is friends with my hairdresser and we talk on the phone from time to time. I talked to her yesterday. They have decided to stop treatment on her daughter (who is five). She has called hospice and been to the funeral home. We talked about how she came to the decision and was actually able to make it. Her answer was that is was prayer. For now, her daughter feels great and is able to run around and ride her bike. They think she may make it to Halloween but doubt she'll make it to Thanksgiving.
I just keep hoping that it is a long time before we are where she is....
Monday, August 21, 2006
Baby you can drive my car
So - we have been dealing with the same group of doctors and nurses for over three years now. We are so lucky because these are a great group of people.
There is a nurse at the hospital that used to work in the clinic occasionally and also is one of the few oncology nurses on the pediatric floor. We have always liked her.
She was Nathan's nurse a week ago when he was inpatient for fever and neutropenia. This is the day I realized I had shingles. I was sitting by Nathan's hospital bed surfing google images for rashes. When I saw a picture of the shingles rash and also saw a map of where it commonly breaks out I started freaking out. When she came into the room I showed it to her and she went and asked a doctor over at the PICU who thought I should get it looked at. I had to go RIGHT AWAY. I was so freaked out about giving Nathan chicken pox and I just couldn't wait for an hour for Luke to get there. I decided it would be fine to leave Nathan alone for a little while. He is so used to the hospital and the nurses and was feeling just fine. I was ready to leave when it occurred to me that I had no car and urgent care was about 2 miles away.
I told his nurse I wouldn't be leaving right away after all because I had no car. Then, I realized I could call a cab and so I did so. I went to the nurses station to tell her that I was leaving right away after all and she offered me her car. She repeatedly offered and I almost took her up on it until I realized her shift was almost over. She said she would catch a ride home with another nurse and then get a ride back with her early the next morning. She had told me earlier that she had the next three days off and so she was actually offering to get up and come into the hospital on her day off just so I could borrow her car. She offered a few more times but I refused and said I had a cab coming anyway and I thanked her profusely.
That is a good example of how caring and just plain nice Nathan's nurses are.
If I ever change careers - nursing is the first career I would choose. Nurses really do make a difference in people's lives. How many other vocations can do that?
There is a nurse at the hospital that used to work in the clinic occasionally and also is one of the few oncology nurses on the pediatric floor. We have always liked her.
She was Nathan's nurse a week ago when he was inpatient for fever and neutropenia. This is the day I realized I had shingles. I was sitting by Nathan's hospital bed surfing google images for rashes. When I saw a picture of the shingles rash and also saw a map of where it commonly breaks out I started freaking out. When she came into the room I showed it to her and she went and asked a doctor over at the PICU who thought I should get it looked at. I had to go RIGHT AWAY. I was so freaked out about giving Nathan chicken pox and I just couldn't wait for an hour for Luke to get there. I decided it would be fine to leave Nathan alone for a little while. He is so used to the hospital and the nurses and was feeling just fine. I was ready to leave when it occurred to me that I had no car and urgent care was about 2 miles away.
I told his nurse I wouldn't be leaving right away after all because I had no car. Then, I realized I could call a cab and so I did so. I went to the nurses station to tell her that I was leaving right away after all and she offered me her car. She repeatedly offered and I almost took her up on it until I realized her shift was almost over. She said she would catch a ride home with another nurse and then get a ride back with her early the next morning. She had told me earlier that she had the next three days off and so she was actually offering to get up and come into the hospital on her day off just so I could borrow her car. She offered a few more times but I refused and said I had a cab coming anyway and I thanked her profusely.
That is a good example of how caring and just plain nice Nathan's nurses are.
If I ever change careers - nursing is the first career I would choose. Nurses really do make a difference in people's lives. How many other vocations can do that?
Saturday, August 19, 2006
Letter
So - I wrote a letter to the editor concerning the column about the woman and her house in disrepair. I wrote it at 10:00 at night so it is neither as eloquent nor as biting as I would have preferred. Heck - I am just not a writer.
Either way - I am pleased to say it was published. I hope one of those neighbors reads it and will feel even a little bit ashamed.
ADDING INSULT TO INJURY
Gazette should have passed
on reporting woman’s woes
I am appalled at the Sidestreets column in the Aug. 17 Gazette, “Years after neighbor’s death, good will sours as house falls into disrepair.” Since when is it considered newsworthy that someone has had trouble keeping up their house after a horrible family tragedy?
The tone of this article seems to indicate that Han Lee should be “over” this tragedy now that five years have passed. These neighbors should be thanking their lucky stars that they have not had such a tragedy occur in their lives and they should continue to offer their assistance if they are so disturbed by the disrepair. It disgusts me that these neighbors were willing to publicly air their petty grievances and I simply cannot believe The Gazette published this column.
Either way - I am pleased to say it was published. I hope one of those neighbors reads it and will feel even a little bit ashamed.
ADDING INSULT TO INJURY
Gazette should have passed
on reporting woman’s woes
I am appalled at the Sidestreets column in the Aug. 17 Gazette, “Years after neighbor’s death, good will sours as house falls into disrepair.” Since when is it considered newsworthy that someone has had trouble keeping up their house after a horrible family tragedy?
The tone of this article seems to indicate that Han Lee should be “over” this tragedy now that five years have passed. These neighbors should be thanking their lucky stars that they have not had such a tragedy occur in their lives and they should continue to offer their assistance if they are so disturbed by the disrepair. It disgusts me that these neighbors were willing to publicly air their petty grievances and I simply cannot believe The Gazette published this column.
Thursday, August 17, 2006
I am so steamed
Our local paper has a weekly column about neighborhood issues. I am so angry about the column that ran today. I will paste it below since it is hard to link to this paper and then comment on it below.
When masked men burst into the Valli Hi Liquor store on Memorial Day 2001 and shot to death owner Hyung Lee, neighbors rallied around his widow, Han.
Some mowed the grass for the South Korean immigrant, who witnessed the slaying of her husband and was threatened with death along with their 16-year-old son.
In the following weeks, neighbors offered to do chores around the house, such as fixing the sprinkler system and repairing the garage door, recognizing the grieving Han was under severe stress trying to learn the business and work the store six days a week while raising her three boys.
But five years later, some residents in the Gatehouse Village neighborhood of Briargate are frustrated with the condition of Lee’s house.
One of Lee’s garage doors is broken. The yard is patchy weeds and mostly dead grass, unlike the tidy lawns of many neighboring houses. A washer and dryer have sat for years in the backyard, visible from the shopping center across Union Boulevard.
“The house is a disaster,” said Jose Carrington, who lives around the corner. “The yard is terrible. There is trash in the yard. Weeds. Cars parked on the grass.
“It’s terrible. And the whole neighborhood feels the same way.”
It’s so bad neighbors have moved away in frustration.
Current and former neighbors who were interviewed expressed sadness for Lee and the trauma she suffered. They were sympathetic that she endured the trials of three men arrested in the crime.
Some shook their heads in disbelief when one of the men, originally convicted of first-degree murder and sentenced to life in prison, won a new trial. And, like her, they were mortified when a jury in November acquitted the suspect and set him free.
They can’t imagine what it must be like for Lee, having to return to the scene of the murder, day after day, working long hours at the liquor store to support her family.
She gave a glimpse of her life at the sentencing of one of the killers: “This is not just a nightmare,” she wrote in comments to the judge. “It is our horrendous reality.”
Walt Damewood lived next door to the Lees for several years and recalled the horror of the events.
“It was so difficult for her,” Damewood said. “She was running the store; working long hours. The only day she had off was Sunday. And she slept most of the day.”
Meanwhile, Damewood said, the house deteriorated as the boys, now ages 13, 18 and 21, started causing problems in the neighborhood. Damewood said he had confrontations with the boys and their friends over noise and other issues.
“The kids went a little crazy,” he said. “Things started getting worse and it got to the point it felt a little on the dangerous side.”
So he sold his house and moved in 2003. At least three other neighbors, who declined to be identified, soon followed Damewood out of Gatehouse Village.
“It was frustrating,” Damewood said. “We loved our home. And our neighbors. We still have a lot of friends there.
“We tried everything to help her. It was so difficult. But the house was deteriorating. She was having a hard time controlling her kids. It was so hard to talk to her because English was her second language. We really felt bad. But we had to move.”
Carrington, however, doesn’t want to move. He wants to see the house cleaned up, the junk hauled away and the yard landscaped.
News of the neighbors’ comments shocked Lee, when contacted at her liquor store.
“I’m going to clean up the house in two weeks,” she said. “I called a fix-it man.”
In fact, the very next morning the front yard of the house had been transformed by Lee and her sons. She promised the garage door would be fixed soon, along with other repairs.
Still, she was surprised anyone paid so much attention to her house.
“People called the newspaper?” she said.
She spoke in a soft voice as she recalled the days after the shooting and the years spent in court, watching the trials.
“I had never worked before,” she said. “I had to learn the business.”
The demands and stress of the business caused her to neglect her home.
“It’s been very hard,” she said. “I’m working all the time here. Six days a week from 9 in the morning until night.
“I don’t know how to start the mower. My husband always did that.”
When Damewood and the other neighbors moved away, her situation got worse. “They used to help me,” she said. “The new neighbors, they never even talk to me.”
Carrington said he was aware the family had suffered a tragedy. But he had never talked to Lee or gotten involved. And to him, it’s no excuse for years of neglect.
“I feel sorry for them,” Carrington said. “But the house needs to be kept up.”
First of all - I cannot believe they ran this column. This poor woman has to be mortified.
What really angers me is the I think this article suggests that she should be "over" her husband's murder after five years and should now be perfectly able to take care of her house.
These neighbors.....I gues they have never had anything tragic happen in their lives. They don't understand the paralization that can come from such a horrible event like this. If they can't stand the way her house looks, why not continue to offer their help. No - they are just standing in judgment and moaning about how their life is ruined because they have to look at her house. How self-centered can they possibly be.
I am just disgusted.
Here is the other thing. This could be us in a few years. Until recently we had weeds and dirt in part of our front lawn. Our back yard is half weeds and dirt. Our house needs to be painted and there are rotting boards. We are fully aware of all of this but all of our energy and much of our finances are spent elsewhere. I don't know if any of our neighbors are saying these things about us - I hope not. If so - they can kiss my ass - That or trade places with me and have it so they are the ones with a kid with cancer and see if they can do a better job.
When masked men burst into the Valli Hi Liquor store on Memorial Day 2001 and shot to death owner Hyung Lee, neighbors rallied around his widow, Han.
Some mowed the grass for the South Korean immigrant, who witnessed the slaying of her husband and was threatened with death along with their 16-year-old son.
In the following weeks, neighbors offered to do chores around the house, such as fixing the sprinkler system and repairing the garage door, recognizing the grieving Han was under severe stress trying to learn the business and work the store six days a week while raising her three boys.
But five years later, some residents in the Gatehouse Village neighborhood of Briargate are frustrated with the condition of Lee’s house.
One of Lee’s garage doors is broken. The yard is patchy weeds and mostly dead grass, unlike the tidy lawns of many neighboring houses. A washer and dryer have sat for years in the backyard, visible from the shopping center across Union Boulevard.
“The house is a disaster,” said Jose Carrington, who lives around the corner. “The yard is terrible. There is trash in the yard. Weeds. Cars parked on the grass.
“It’s terrible. And the whole neighborhood feels the same way.”
It’s so bad neighbors have moved away in frustration.
Current and former neighbors who were interviewed expressed sadness for Lee and the trauma she suffered. They were sympathetic that she endured the trials of three men arrested in the crime.
Some shook their heads in disbelief when one of the men, originally convicted of first-degree murder and sentenced to life in prison, won a new trial. And, like her, they were mortified when a jury in November acquitted the suspect and set him free.
They can’t imagine what it must be like for Lee, having to return to the scene of the murder, day after day, working long hours at the liquor store to support her family.
She gave a glimpse of her life at the sentencing of one of the killers: “This is not just a nightmare,” she wrote in comments to the judge. “It is our horrendous reality.”
Walt Damewood lived next door to the Lees for several years and recalled the horror of the events.
“It was so difficult for her,” Damewood said. “She was running the store; working long hours. The only day she had off was Sunday. And she slept most of the day.”
Meanwhile, Damewood said, the house deteriorated as the boys, now ages 13, 18 and 21, started causing problems in the neighborhood. Damewood said he had confrontations with the boys and their friends over noise and other issues.
“The kids went a little crazy,” he said. “Things started getting worse and it got to the point it felt a little on the dangerous side.”
So he sold his house and moved in 2003. At least three other neighbors, who declined to be identified, soon followed Damewood out of Gatehouse Village.
“It was frustrating,” Damewood said. “We loved our home. And our neighbors. We still have a lot of friends there.
“We tried everything to help her. It was so difficult. But the house was deteriorating. She was having a hard time controlling her kids. It was so hard to talk to her because English was her second language. We really felt bad. But we had to move.”
Carrington, however, doesn’t want to move. He wants to see the house cleaned up, the junk hauled away and the yard landscaped.
News of the neighbors’ comments shocked Lee, when contacted at her liquor store.
“I’m going to clean up the house in two weeks,” she said. “I called a fix-it man.”
In fact, the very next morning the front yard of the house had been transformed by Lee and her sons. She promised the garage door would be fixed soon, along with other repairs.
Still, she was surprised anyone paid so much attention to her house.
“People called the newspaper?” she said.
She spoke in a soft voice as she recalled the days after the shooting and the years spent in court, watching the trials.
“I had never worked before,” she said. “I had to learn the business.”
The demands and stress of the business caused her to neglect her home.
“It’s been very hard,” she said. “I’m working all the time here. Six days a week from 9 in the morning until night.
“I don’t know how to start the mower. My husband always did that.”
When Damewood and the other neighbors moved away, her situation got worse. “They used to help me,” she said. “The new neighbors, they never even talk to me.”
Carrington said he was aware the family had suffered a tragedy. But he had never talked to Lee or gotten involved. And to him, it’s no excuse for years of neglect.
“I feel sorry for them,” Carrington said. “But the house needs to be kept up.”
First of all - I cannot believe they ran this column. This poor woman has to be mortified.
What really angers me is the I think this article suggests that she should be "over" her husband's murder after five years and should now be perfectly able to take care of her house.
These neighbors.....I gues they have never had anything tragic happen in their lives. They don't understand the paralization that can come from such a horrible event like this. If they can't stand the way her house looks, why not continue to offer their help. No - they are just standing in judgment and moaning about how their life is ruined because they have to look at her house. How self-centered can they possibly be.
I am just disgusted.
Here is the other thing. This could be us in a few years. Until recently we had weeds and dirt in part of our front lawn. Our back yard is half weeds and dirt. Our house needs to be painted and there are rotting boards. We are fully aware of all of this but all of our energy and much of our finances are spent elsewhere. I don't know if any of our neighbors are saying these things about us - I hope not. If so - they can kiss my ass - That or trade places with me and have it so they are the ones with a kid with cancer and see if they can do a better job.
Is he kidding?
So - I have watched the TLC show Shalom in the Home a few times. I decided I didn't really like the host and decided that he was arrogant, but had nothing against him.
Well - now I do have something against him. Read what he writes about breastfeeding and its negative affects on the marriage.
Well - now I do have something against him. Read what he writes about breastfeeding and its negative affects on the marriage.
Sunday, August 13, 2006
Wednesday, August 09, 2006
Dilemma resolution
I didn't go. Nathan went to the clinic and got his counts checked late this afternoon and his hemoglobin was 6.4. It should be above 12 so it was very low. He is going to Denver tomorrow and so can't have one then. So he and I went off to the hospital to get some blood. Luke came around 5:00 and I could have run to the school but I had Lauren who needed feeding. I also remembered there is a back to school night in a few weeks for the parents to meet with the teacher and the teacher will talk about the curriculum so I think I will just attend that. I still need to run over to the school and view the class list.
You guys had some good suggestions and I think I will try to meet with his teacher privately as well.
You guys had some good suggestions and I think I will try to meet with his teacher privately as well.
Tuesday, August 08, 2006
Dilemma
So - I have been trying to not let this blog be dominted by Nathan's situation - but I guess the reality is that my life is dominated by it and so I have no choice.
School starts next Monday. Nathan will not be going. He will be getting a homebound tutor 5 hours a week. It is our intention that he go to school whenever he is able. It is unfortunate that he cannot at least start school with his class so he can feel a part of it.
Tomorrow night is an ice cream social and meet the teacher night. The first graders are meeting in the classroom and I assume will be oriented about full-day school. I think it would be good if I was there. I think it would also be good if Nathan could go.
Here is the dilemma. Let's say Nathan was physically able to go. He should probably wear a mask. He may not be able to walk well - I might have to push him in a stroller. My god - would it be more harmful for him to go meet his classmates in that state? He is looking like hell right now. For him that is not the usual bald and skinny it is also the deathly pale/grayish pallor. The kids will probably be freaked out by him.
It is likely he won't be up to going anyway so it will all be moot. I guess I will go...I hope I can keep from getting teary - it will be terribly depressing to be there without Nate. So - maybe I won't go at all. I would like to meet his teacer though....
School starts next Monday. Nathan will not be going. He will be getting a homebound tutor 5 hours a week. It is our intention that he go to school whenever he is able. It is unfortunate that he cannot at least start school with his class so he can feel a part of it.
Tomorrow night is an ice cream social and meet the teacher night. The first graders are meeting in the classroom and I assume will be oriented about full-day school. I think it would be good if I was there. I think it would also be good if Nathan could go.
Here is the dilemma. Let's say Nathan was physically able to go. He should probably wear a mask. He may not be able to walk well - I might have to push him in a stroller. My god - would it be more harmful for him to go meet his classmates in that state? He is looking like hell right now. For him that is not the usual bald and skinny it is also the deathly pale/grayish pallor. The kids will probably be freaked out by him.
It is likely he won't be up to going anyway so it will all be moot. I guess I will go...I hope I can keep from getting teary - it will be terribly depressing to be there without Nate. So - maybe I won't go at all. I would like to meet his teacer though....
Saturday, August 05, 2006
Methylene Blue
So - over the years Nathan has had all sorts of medications. He is currently getting the weirdest one - methylene blue. He is getting the chemo ifosfamide and it can can neuro-toxicity as described here: Ifosfamide is an alkylating agent with well-demonstrated efficacy against a large number of malignant diseases. With cyclophosphamide it shares a toxicity profile characterized by myelosuppression and urotoxicity, but ifosfamide has additionally disclosed adverse neurological effects. Ifosfamide-related central nervous system toxicity is characterized by metabolic encephalopathy of varying severity. Symptoms have been reported in 5-30% of all patients treated with ifosfamide. Copyright © 2003 S. Karger AG, Basel
They have found that treating with methylene blue can prevent the toxicity.
So - you can see from the picture that it is very dark blue. It is the color of the bottle. It was bizarre to see it pushed through Nathan's IV. He is now proudly peeing blue. It isn't just bluish - it is bright blue. His other bodily fluids are also blue. He has had each of us take a look at his blue pee - I am glad he gets a kick out of it at least.
Thursday, August 03, 2006
Save as Draft...
...seems to be as close as I have gotten to posting any entries lately. With my current state of mind I just don't have what it takes I guess.
I have been up since before 4:00 this morning because Nathan needed his sheets changed. He is on 60ml of IV fluids per hour and so that is a challenge. As usual at that hour - once awake I was up for the day.
So - I shall hit the Publish Post button this time and submit a boring post just for the sake of posting.
I have been up since before 4:00 this morning because Nathan needed his sheets changed. He is on 60ml of IV fluids per hour and so that is a challenge. As usual at that hour - once awake I was up for the day.
So - I shall hit the Publish Post button this time and submit a boring post just for the sake of posting.
Sunday, July 30, 2006
Controlled Panic
That is my most current state. It is a state in which I can have a pretty good weekend (about which I shall soon blog) .
Since my last post I had another crappy day in which we assumed Nathan would have a neccessary test on Friday or Monday and then were told it couldn't be done until August 16 and his local doctor suggested a round of chemo while we waited. Luke and I both decided that wouldn't do and were trying to figure out if there was another Children's hosptial within driving distance we could go to and get the test done. I called his doctor to tell him we were not going to settle for an impromptu round of chemo and he told me that they found a different hospital in Denver that would do the test (GFR - nuclear med version ) but not until Wednesday. So - that was good(ish) news except he really should have had chemo 6 days ago (well really about 20 days ago) and best case scenario has him starting 5 days from now.
So - I have this constant vision in my head of all the cancer in his body rapidly dividing/multiplying. His last round of chemo was June 18. Surely the cancer is starting to grow and it is making me sick thinking about it.
Some of these delays were unavoidable but I TRIED to get a plan in place in case Nathan had delayed counts and I couldn't get either doctor to plan ahead and if his cancer has gotten out of control and cannot be beaten back because of this I am going to be so angry.
Since my last post I had another crappy day in which we assumed Nathan would have a neccessary test on Friday or Monday and then were told it couldn't be done until August 16 and his local doctor suggested a round of chemo while we waited. Luke and I both decided that wouldn't do and were trying to figure out if there was another Children's hosptial within driving distance we could go to and get the test done. I called his doctor to tell him we were not going to settle for an impromptu round of chemo and he told me that they found a different hospital in Denver that would do the test (GFR - nuclear med version ) but not until Wednesday. So - that was good(ish) news except he really should have had chemo 6 days ago (well really about 20 days ago) and best case scenario has him starting 5 days from now.
So - I have this constant vision in my head of all the cancer in his body rapidly dividing/multiplying. His last round of chemo was June 18. Surely the cancer is starting to grow and it is making me sick thinking about it.
Some of these delays were unavoidable but I TRIED to get a plan in place in case Nathan had delayed counts and I couldn't get either doctor to plan ahead and if his cancer has gotten out of control and cannot be beaten back because of this I am going to be so angry.
Wednesday, July 26, 2006
Emotionally tired
Yep that's me.
We had two different treatment scenarios for Nathan today. The first half of the day we were going to New York next week. The second half of the day we were staying here and doing some scary/harsh chemo for Nathan. Contemplating both things has left me done. In fact I had a beer for dinner and it as affected me like it was a double shot of whiskey.
Add this to my constant question of how you deal with a child who you know is going to die sometime in the next few months/years but is not "dying" and is in fact feeling great. How do you live with that? I guess what I have come up with is what we have been doing all along. Just try to live life as normally as possible. It really is the everyday little things in life that matter. My victory over this beast is to live the best most life I can which will give Nathan a childhood as close to "normal" as is possible. That said - it takes more effort than you all can imagine to do that.
To that end we went off to the swimming pool and I left Luke manning the phone to talk to the oncologist about Nathan's plan. The kids had a blast. Sure - Nathan stood out with the whole lack of hair thing - but he didn't even see the stares.
We had two different treatment scenarios for Nathan today. The first half of the day we were going to New York next week. The second half of the day we were staying here and doing some scary/harsh chemo for Nathan. Contemplating both things has left me done. In fact I had a beer for dinner and it as affected me like it was a double shot of whiskey.
Add this to my constant question of how you deal with a child who you know is going to die sometime in the next few months/years but is not "dying" and is in fact feeling great. How do you live with that? I guess what I have come up with is what we have been doing all along. Just try to live life as normally as possible. It really is the everyday little things in life that matter. My victory over this beast is to live the best most life I can which will give Nathan a childhood as close to "normal" as is possible. That said - it takes more effort than you all can imagine to do that.
To that end we went off to the swimming pool and I left Luke manning the phone to talk to the oncologist about Nathan's plan. The kids had a blast. Sure - Nathan stood out with the whole lack of hair thing - but he didn't even see the stares.
Monday, July 24, 2006
Another Lauren crawling video
I just have to share Lauren's newest way to crawl. Previously she was on her tummy pushing with one foot. Now she is on her knees but still insists on using a foot.
Thursday, July 20, 2006
Nerd ABCs
I swiped this off of blogging baby.
http://tiffanyard.com/nerd.htm
I love this idea - I guess I am a nerd!
Monday, July 17, 2006
Under the weather...again
I have another breast infection. Sorry if that is TMI! It isn't too severe - it kept me up alot in the night but I was still able to take Nathan to the doctor today. I went in to my doctor late this afternoon and I had high blood pressure as well - she chalked it up to all my stress.
So - I will take some antibiotics and hopefully feel all better in a day or two.
Four more months (or so) of breastfeeding - I hope this is the last bout!
So - I will take some antibiotics and hopefully feel all better in a day or two.
Four more months (or so) of breastfeeding - I hope this is the last bout!
Saturday, July 15, 2006
Bulk
I blogged in the past about my addiction to sea salt bagel chips . Last week I made a dangerous discovery. While at Sam's Club I discovered a 23 ounce bag of them! I usually buy 6 ounce bags. I got 4 times the amount for about twice the price. Of course, this is not really a good thing so I hope it is only a one-time buy or else I might turn into a bagel chip.
Tuesday, July 11, 2006
Do I have my honorary nursing degree yet?
* Warning - images not for the needle phobic!*
Today I had to access Nathan's port at home. We numb his skin first with a cream so the needle going in barely hurts. If you told me that some day I would be able to stick a needle into my child's chest without a second thought I would have told you you were nuts!
The before pictures would have been of me spending about 10 minutes drawing medicines and flushes into syringes and setting out all the supplies for the port access.
Afterwards, I put some gauze under the needle and a tegaderm bandaged of the the needle to protect it. He can keep it in for a week. I gave him a medicine that has to be pushed in over 15 minutes so I just sit and watch the clock and very slowly push in 10 mls. Then I flush the port with heparin to keep it from being clotted. Correction - HE flushes it. He insists on doing all the syringe pushes that he can.
Today I had to access Nathan's port at home. We numb his skin first with a cream so the needle going in barely hurts. If you told me that some day I would be able to stick a needle into my child's chest without a second thought I would have told you you were nuts!
The before pictures would have been of me spending about 10 minutes drawing medicines and flushes into syringes and setting out all the supplies for the port access.
Afterwards, I put some gauze under the needle and a tegaderm bandaged of the the needle to protect it. He can keep it in for a week. I gave him a medicine that has to be pushed in over 15 minutes so I just sit and watch the clock and very slowly push in 10 mls. Then I flush the port with heparin to keep it from being clotted. Correction - HE flushes it. He insists on doing all the syringe pushes that he can.
Chipotle chips
Luke and I had sone Chipotle the other night. We love their chips and guacamole. While we were waiting in line I witnessed them preparing their chips. They actually take a big bowl of chips and squeeze several limes over them, toss them, add some kosher salt and then toss them again. No wonder they are so good and also why sometimes you bite into the saltiest chip you ever had.
Saturday, July 08, 2006
Prison-Hospital
or something like that is how Luke described our house right now. I think he is jealous because I had a furlough. I went to a children's birthday party but left the kids and took the baby. This party was hosted by a good friend attended by several other friends and it was kind of nice only tending to a baby and not fetching drinks and plates and corralling my own kids.
Current health situation:
from sickest to wellest:
Luke -pneumonia - actively feeling bad
Nathan - neutropenia AKA no white blood cells - but curently fever-free though we are not holding our breath. Is not allowed to be out in public.
Julia -recovering well from the pneumonia - tonight we are not putting on the oxygen and will test her before we go to bed.
Me and Lauren - tie - we both have colds but both are feeling much better. She cut a tooth last night and I am lacking sleep and fighting off a breast infection.
I am toying with the idea of another prison break tomorrow morning with Lauren to go to church. The jury is still out.
We will soon be joined in the prison by my in-laws and so maybe it will seem more like a half-way house instead since it will be alot easier to leave at will. Either way it will be more enjoying to be in it with their company.
Current health situation:
from sickest to wellest:
Luke -pneumonia - actively feeling bad
Nathan - neutropenia AKA no white blood cells - but curently fever-free though we are not holding our breath. Is not allowed to be out in public.
Julia -recovering well from the pneumonia - tonight we are not putting on the oxygen and will test her before we go to bed.
Me and Lauren - tie - we both have colds but both are feeling much better. She cut a tooth last night and I am lacking sleep and fighting off a breast infection.
I am toying with the idea of another prison break tomorrow morning with Lauren to go to church. The jury is still out.
We will soon be joined in the prison by my in-laws and so maybe it will seem more like a half-way house instead since it will be alot easier to leave at will. Either way it will be more enjoying to be in it with their company.
Thursday, July 06, 2006
Can't escape it
So - we have been doing the mail DVD rental thing again. I received Sisterhood of the Travelling Pants and decided to watch it last night. I figured it would be a light, easy movie to watch . A minor spoiler follows.
About halfway through it happened....
A character is found to be dying of Leukemia. Huh? Where did that come from.
Geesh - if we can't escape childhood cancer in a movie like that, where can we?
Sigh
About halfway through it happened....
A character is found to be dying of Leukemia. Huh? Where did that come from.
Geesh - if we can't escape childhood cancer in a movie like that, where can we?
Sigh
Wednesday, July 05, 2006
Too tired to blog
Yup - I just am. I want to be blogging but my mind is mush.
What's the first thing to come to my mind? I tried this a minute ago and it was the bag of platelets Nathan got today. They were about the same color as the clementine IZZE I am drinking right now.
Speaking of IZZE - the one I drank last night had a bottle cap that announced they are now making apple IZZE - I am very excited to try it as sparkling apple beverages are my favorite.
What's the first thing to come to my mind? I tried this a minute ago and it was the bag of platelets Nathan got today. They were about the same color as the clementine IZZE I am drinking right now.
Speaking of IZZE - the one I drank last night had a bottle cap that announced they are now making apple IZZE - I am very excited to try it as sparkling apple beverages are my favorite.
Monday, July 03, 2006
Why relapse is better
Ok - so of course relapse is not better than NED (no evidence of disease). But - there's a silver lining to every cloud right?
Nathan: Mommy I am too tired to color
Susan's internal voice: Nathan is tired - maybe it is cancer?
Susan's second voice of reason : Remember, he does have cancer again
Susan's happy side: Hey - I don't have to worry about every little physical complaint Nathan makes anymore being a relapse. He HAS relapsed. Hey - it is kind of nice not having to worry about a possible relapse anymore!
Nathan: Mommy I am too tired to color
Susan's internal voice: Nathan is tired - maybe it is cancer?
Susan's second voice of reason : Remember, he does have cancer again
Susan's happy side: Hey - I don't have to worry about every little physical complaint Nathan makes anymore being a relapse. He HAS relapsed. Hey - it is kind of nice not having to worry about a possible relapse anymore!
Thursday, June 29, 2006
A room with a view
Most people reading this keep up with Nathan's page and so you probably already know that he is in the hospital and Julia is at home on oxygen for pneumonia. I thought I'd add some visuals.The picturesque scene to the left was taken with my phone out the window in Nathan's hospital room. The onocology kids get private rooms with the view of the park. On of the perks, I guess.
I stayed with Nathan at the hospital today. Since I am breastfeeding, Lauren stayed too. She did pretty well today but I doubt tomorrow will go as well. She is currently in her crib crying refusing to go to bed.
Julia is all hooked up to the oxygen, dosed up with codeine cough syrup and in bed. I am already sick of hearing the drone of the large oxygen machine sitting in out upstairs hall.I have no idea how long she will need the oxygen. What a pair her and Nathan will make in their room at night, Julia on oxygen, Nathan hooked up to IV antibiotics.
Monday, June 26, 2006
Changing the subject....
I feel the need to write a new post. Sorry about how depressing the last one was.
How about I talk about Lauren. She is growing so fast. She is army-man crawling quite effeciently now. She is also going from her stomach to a sitting position and se pulled up on the bunkbed ladder yesterday. She is such a joy. She hugs us and smiles while doing it. She plays so well by herself and she just wants to be happy all the time.
Here are some pictures.
How about I talk about Lauren. She is growing so fast. She is army-man crawling quite effeciently now. She is also going from her stomach to a sitting position and se pulled up on the bunkbed ladder yesterday. She is such a joy. She hugs us and smiles while doing it. She plays so well by herself and she just wants to be happy all the time.
Here are some pictures.
Saturday, June 24, 2006
All's quiet.......
I have been gathering my thoughts on the "A Lion in the House" documentary and I hope to post about it soon.
Otherwise I feel I have nothing interesting to write. I am definately slumping into a depression. It is hard to face the facts that this time, there is almost no chance of Nathan going into remission again and if he does, staying there is so very unlikely. How do you look at 6 year old boy happy and running around and also wrap your head around the fact that his body is filled with cancer and it is probably going to kill him?
So - that's where I am at. That's all I can say.
Otherwise I feel I have nothing interesting to write. I am definately slumping into a depression. It is hard to face the facts that this time, there is almost no chance of Nathan going into remission again and if he does, staying there is so very unlikely. How do you look at 6 year old boy happy and running around and also wrap your head around the fact that his body is filled with cancer and it is probably going to kill him?
So - that's where I am at. That's all I can say.
Tuesday, June 20, 2006
A Lion in the House
This documentary is billed to be a very real look at the issues families dealing with childhood cancer deal with. I imagine it will be difficult to watch. I plan on Tivo-ing it to watch when I am ready. Any of you who have wondered what it is life for us...this program might give you an insight.
It airs Wednesday June 21 and Thursday June 22 on PBS
Independent Lens . A LION IN THE HOUSE | PBS
It airs Wednesday June 21 and Thursday June 22 on PBS
Independent Lens . A LION IN THE HOUSE | PBS
Monday, June 19, 2006
An imprompto echo
Nathan started his first chemo today since we found out his cancer is back again. This is his 14th round of "chemo" in addition to 10 rounds of high-dose accutane. I am used to this chemo stuff. I was delighted to discover the chemo he is having all week is only a 1 and a half hour infusion! This is very short in chemo-land.
He finished up and we stopped at a nearby bakery for a goodie. As he was perusing the case he started to stagger and sway. I sat him down and his eyes kept closing and rolling back. He recovered after a minute or two and picked out a cookie. We drove right back over to the clinic where they checked him out and could find no reason for it. His doctor decided he had better have an echocardiogram before chemo tomorrow since this chemo can cause heart problems and he has had plenty of this type in the past as well as other types that can hurt the heart. They sent us right over and he had the echo. The tech told me his heart function is just fine.
Now, I am just not sure about mine.
He finished up and we stopped at a nearby bakery for a goodie. As he was perusing the case he started to stagger and sway. I sat him down and his eyes kept closing and rolling back. He recovered after a minute or two and picked out a cookie. We drove right back over to the clinic where they checked him out and could find no reason for it. His doctor decided he had better have an echocardiogram before chemo tomorrow since this chemo can cause heart problems and he has had plenty of this type in the past as well as other types that can hurt the heart. They sent us right over and he had the echo. The tech told me his heart function is just fine.
Now, I am just not sure about mine.
Sunday, June 18, 2006
Happy Father's Day
A shout out to all the wonderful Dads out there. A special greeting for my Dad, Bill, my father-in-law, Mike and most importantly my husband, Luke!
We are not doing anything today because we threw a birthday party for 60-some people yesterday at a park and are worn out and also because Julia is sick with a fever.
Luke is also not feeling very festive today in light of our bad news about Nathan this week. We brought Nathan home from the hospital 6 years ago today, also on Father's Day.
So - I wan't going for the down tone in this - sorry.
Fathers, hug your kids today and kids, hug your dads.
We are not doing anything today because we threw a birthday party for 60-some people yesterday at a park and are worn out and also because Julia is sick with a fever.
Luke is also not feeling very festive today in light of our bad news about Nathan this week. We brought Nathan home from the hospital 6 years ago today, also on Father's Day.
So - I wan't going for the down tone in this - sorry.
Fathers, hug your kids today and kids, hug your dads.
Friday, June 16, 2006
Happy 6th Birthday Nathan!
June 16, 2000
June 16, 2001
June 16, 2002
June 16, 2003
June 16, 2004
June 16, 2005
June 16, 2006
Loooong Day
Tuesday, June 13 - in New York City
5:15 am - wake up and shower
6:00 am - nurse Lauren and pump
6:30 am - get stuff together and go catch a cab
6:50 am - arrive at the hospital and the door is locked. I realize I have forgotten to put EMLA (numbing cream ) on Nathan's port so we stop on the street and he lifts up his shirt for me to do it. We then walk to a different door.
7:00 am check in at the Day Hospital.
7:00 - 7:30 am - fight with Nathan to drink oral contrast for his CT scan. I mixed it with 8 oz of ginger ale. He cannot drink that fast. I go get a syringe from the nurses and squirt it in his mouth. He finishes right at 7:30.
7:30 we are waiting
7:40 - Lauren is hungry again - I nurse her with my coverup on.
7:45 - we are still waiting and Nathan needs her port accessed. I stand up - nursing and all and go to the IV room to ask. They take Nathan and I finish nursing Lauren while they put in his port needle and take several vials of blood. They hook him up to an IV pole as well.
8:10 - We all go down to CT scan.
8:10 - 9:00 - we wait for the 8:20 CT scan.
9:00 - my mom goes with Nathan to CT scan. Since I am a nursing mother and I had an alternative they thought it was better if my mom went in instead of me.
9:15 - done with CT scan - back upstairs to the Day Hospital
9:15 - 9:35 we wait for his exam he needs before his bone marrow aspirations (BMA)
9:35 - They are ready to see him. The nurse is slowly checking him out when I ask about his BMA which is supposed to be at 9:40 - they are running late - no worries.
9:40 - 10:20 - Nathan has his exam and I chat with the doctor and nurses.
10:20 - 10:45 - We wait in the Playroom for them to call him for his BMA. He is getting hungry - but no food allowed. My mom and I feed Lauren some baby food.
10:45 - they are ready for him. I take him to the bathroom to collect his urine. I get pee on my pants but at least it is not yet radioactive (you'll see later)
10:45 - 10:55 We go into the procedure room and he lies down on the table. We wait for the anesthesiologist and chat with the the nurses and doctors.
10:55 - The anesthesiologist kicks me out before she puts Nathan under. She said "mom out now - Dr. X's rule!" Usually I can stay while they put him under but it is no big deal. Doctor says to me quietly - "is that OK Mrs. G?" I relpy that it is just fine and leave.
10:55 - 11:30 - I wait in the small waiting area. I chat with two sisters who remember me from several years ago. I catch up with them about their daugther/niece. I call Luke and chat for a few mintues. I talk with a grandmother waiting for her grandson to be done with an echo. He is recently diagnosed and I can tell she is still reeling but far enough past the shock stage to have the adrenaline and looks very weary. We exchange stories.
11:30 Nathan is awake. I bring him his post BMA present - a mail truck. He is groggy but very happy. He says he wants to go. I carry him out since he is still walking like a drunk person. We go find my mom and Lauren and Lauren needs to nurse again and so it is a good excuse to make Nathan sit for a few minutes. My mom goes and fetches a cookie from the teen room to keep Nathan happy.
11:50 - 1:00 We all go down to the cafeteria for lunch. We get it in shifts while someone sits with Lauren. It is very crowded and we take our time.
1:00 - 1:35 we go back up to the Day Hospital and Nathan plays in the playroom.
1:35 - 3:05 - we wait and wait and wait for Nathan's MIBG injection. The injection takes about 5 minutes and is scheduled for 1:45. They are apparently VERY backed up. Nathan and I are SO tired of waiting. There is a TV on tuned to Days of Our Lives. The story lines are ridiculous. Nathan plays with his cars and trucks. We realize the promised playground romp after the MIBG injection is now not going to happen.
3:05 - 3:15 - get the MIBG injection (now Nathan is radioactive)
3:15 - 3:45 - we go back upstairs and find my mom with a sleeping LAuren who is so hungry she has fallen asleep after crying. I wake her up and nurse her while Nathan paints in the playroom.
3:45 - we all make our way to 11 to the MRI scheduled for 4:00 pm
3:45 - 5:00 - we wait for the MRI. Nathan plays, Lauren acts hungry again so I nurse her a little. We chat with the other occupants of the small waiting room. There is a man who is retireing as a NYC fire fighter. He was at ground zero. He has since developed brain cancer. They and lots of their doctors believe his ground zero exposure is to blame.
5:00 - Nathan and I go into the MRI. We are given earplugs and he is put into the machine. I sit in my chair eyeing everything metal. Nathan has already expressed concern about his port needle and is assure it is stainless steel and it is only iron and nickel we need to worry about.
5:00 - 5:45 - Nathan has his MRI. The machine is not nearly and loud as ones I have sat outside the door of in the past. We get done and go get my mom and Lauren and head out.
5:50 - we catch a cab and go back to my Aunt's apartment.
6:00 - we freshen up and give Lauren her daily bottle.
6:15 - we go up to see friends Jo and Ju who live in the same building. My aunt is good friends with them from childhood and so my mother know her a little too.
6:15 - 6:45 - we drink some wine and chat - ahhhh
6:45 - 8:15 - we dine and talk.
8:15 - Lauren is tire and hungry and so we have to go.
8:15 - 8:45 I nurse Lauren while my mom tries to put Nathan to bed. He doesn't like to sleep in a room by himself so there is much cajoling.
8:45 - I put Lauren down in the crin in the hall and so we stay in the bedroom and watch TV until it is time to sleep.
10:00 - I go to sleep.
5:15 am - wake up and shower
6:00 am - nurse Lauren and pump
6:30 am - get stuff together and go catch a cab
6:50 am - arrive at the hospital and the door is locked. I realize I have forgotten to put EMLA (numbing cream ) on Nathan's port so we stop on the street and he lifts up his shirt for me to do it. We then walk to a different door.
7:00 am check in at the Day Hospital.
7:00 - 7:30 am - fight with Nathan to drink oral contrast for his CT scan. I mixed it with 8 oz of ginger ale. He cannot drink that fast. I go get a syringe from the nurses and squirt it in his mouth. He finishes right at 7:30.
7:30 we are waiting
7:40 - Lauren is hungry again - I nurse her with my coverup on.
7:45 - we are still waiting and Nathan needs her port accessed. I stand up - nursing and all and go to the IV room to ask. They take Nathan and I finish nursing Lauren while they put in his port needle and take several vials of blood. They hook him up to an IV pole as well.
8:10 - We all go down to CT scan.
8:10 - 9:00 - we wait for the 8:20 CT scan.
9:00 - my mom goes with Nathan to CT scan. Since I am a nursing mother and I had an alternative they thought it was better if my mom went in instead of me.
9:15 - done with CT scan - back upstairs to the Day Hospital
9:15 - 9:35 we wait for his exam he needs before his bone marrow aspirations (BMA)
9:35 - They are ready to see him. The nurse is slowly checking him out when I ask about his BMA which is supposed to be at 9:40 - they are running late - no worries.
9:40 - 10:20 - Nathan has his exam and I chat with the doctor and nurses.
10:20 - 10:45 - We wait in the Playroom for them to call him for his BMA. He is getting hungry - but no food allowed. My mom and I feed Lauren some baby food.
10:45 - they are ready for him. I take him to the bathroom to collect his urine. I get pee on my pants but at least it is not yet radioactive (you'll see later)
10:45 - 10:55 We go into the procedure room and he lies down on the table. We wait for the anesthesiologist and chat with the the nurses and doctors.
10:55 - The anesthesiologist kicks me out before she puts Nathan under. She said "mom out now - Dr. X's rule!" Usually I can stay while they put him under but it is no big deal. Doctor says to me quietly - "is that OK Mrs. G?" I relpy that it is just fine and leave.
10:55 - 11:30 - I wait in the small waiting area. I chat with two sisters who remember me from several years ago. I catch up with them about their daugther/niece. I call Luke and chat for a few mintues. I talk with a grandmother waiting for her grandson to be done with an echo. He is recently diagnosed and I can tell she is still reeling but far enough past the shock stage to have the adrenaline and looks very weary. We exchange stories.
11:30 Nathan is awake. I bring him his post BMA present - a mail truck. He is groggy but very happy. He says he wants to go. I carry him out since he is still walking like a drunk person. We go find my mom and Lauren and Lauren needs to nurse again and so it is a good excuse to make Nathan sit for a few minutes. My mom goes and fetches a cookie from the teen room to keep Nathan happy.
11:50 - 1:00 We all go down to the cafeteria for lunch. We get it in shifts while someone sits with Lauren. It is very crowded and we take our time.
1:00 - 1:35 we go back up to the Day Hospital and Nathan plays in the playroom.
1:35 - 3:05 - we wait and wait and wait for Nathan's MIBG injection. The injection takes about 5 minutes and is scheduled for 1:45. They are apparently VERY backed up. Nathan and I are SO tired of waiting. There is a TV on tuned to Days of Our Lives. The story lines are ridiculous. Nathan plays with his cars and trucks. We realize the promised playground romp after the MIBG injection is now not going to happen.
3:05 - 3:15 - get the MIBG injection (now Nathan is radioactive)
3:15 - 3:45 - we go back upstairs and find my mom with a sleeping LAuren who is so hungry she has fallen asleep after crying. I wake her up and nurse her while Nathan paints in the playroom.
3:45 - we all make our way to 11 to the MRI scheduled for 4:00 pm
3:45 - 5:00 - we wait for the MRI. Nathan plays, Lauren acts hungry again so I nurse her a little. We chat with the other occupants of the small waiting room. There is a man who is retireing as a NYC fire fighter. He was at ground zero. He has since developed brain cancer. They and lots of their doctors believe his ground zero exposure is to blame.
5:00 - Nathan and I go into the MRI. We are given earplugs and he is put into the machine. I sit in my chair eyeing everything metal. Nathan has already expressed concern about his port needle and is assure it is stainless steel and it is only iron and nickel we need to worry about.
5:00 - 5:45 - Nathan has his MRI. The machine is not nearly and loud as ones I have sat outside the door of in the past. We get done and go get my mom and Lauren and head out.
5:50 - we catch a cab and go back to my Aunt's apartment.
6:00 - we freshen up and give Lauren her daily bottle.
6:15 - we go up to see friends Jo and Ju who live in the same building. My aunt is good friends with them from childhood and so my mother know her a little too.
6:15 - 6:45 - we drink some wine and chat - ahhhh
6:45 - 8:15 - we dine and talk.
8:15 - Lauren is tire and hungry and so we have to go.
8:15 - 8:45 I nurse Lauren while my mom tries to put Nathan to bed. He doesn't like to sleep in a room by himself so there is much cajoling.
8:45 - I put Lauren down in the crin in the hall and so we stay in the bedroom and watch TV until it is time to sleep.
10:00 - I go to sleep.
Thursday, June 15, 2006
Bravery
| brav·er·y |
noun |
| Definition: |
| great courage: courage in the face of danger, difficulty, or pain |
I have been thinking about that word since many people told Nathan how brave he was over the last few days. I wondered to myself if bravery was more about taking on difficult things that were NOT required and so I wondered if the word properly applied to him. Now that I see the definition I see that indeed, it does.
Full plate
I just got back from New York City last night from Nathan's scans. I wish I had been able to blog while I was there because there were lots of things I wanted to blog about. I will try to resurrect some of them. Meanwhile I have to plan for Nathan's birthday party Saturday. It will be 50 some people at a pavillion at a park and I have done nothing!
We are also waiting for scan resultrs which I am expecting to be bad news. One of his scans is the type where bad stuff "lights up" and I have seen enough of these to know what is and is not supposed to light up and I think I saw stuff. Hopefully the doctor will get back to us the scans today. We'll go from there....
We are also waiting for scan resultrs which I am expecting to be bad news. One of his scans is the type where bad stuff "lights up" and I have seen enough of these to know what is and is not supposed to light up and I think I saw stuff. Hopefully the doctor will get back to us the scans today. We'll go from there....
Saturday, June 10, 2006
Friday, June 09, 2006
An easy dinner
We have some leftover salad. I decided I would just make a pasta salad to go with it. I could make it this morning and dinner would be done.
Well - I decided I needed some bread - so I made some bread from scratch.
Then I remember we had a bag of granny smith apples in the pantry and so I decided I should make a pie *(more on that in a minute)
All the while Lauren had resisted all naps I tried to give her. So she *helped* me do all af the above plus the dishes.
So - now that I am done except for the pie in the oven she has finally decided to nap. I need one too!
*Back to the pie. Kathy - I am going to have to deny (for your sake) that we are related if anyone else sees this pie. Kathy, who is my mother-in-law, is a "pie-expert" as my kids say. I am ashamed of this pie. The crust is a wreck. It fell apart and so it has pieces stuck to it like patchwork. It is the ugliest pie! I just hope it tastes OK. I will need a refresher next month.
Well - I decided I needed some bread - so I made some bread from scratch.
Then I remember we had a bag of granny smith apples in the pantry and so I decided I should make a pie *(more on that in a minute)
All the while Lauren had resisted all naps I tried to give her. So she *helped* me do all af the above plus the dishes.
So - now that I am done except for the pie in the oven she has finally decided to nap. I need one too!
*Back to the pie. Kathy - I am going to have to deny (for your sake) that we are related if anyone else sees this pie. Kathy, who is my mother-in-law, is a "pie-expert" as my kids say. I am ashamed of this pie. The crust is a wreck. It fell apart and so it has pieces stuck to it like patchwork. It is the ugliest pie! I just hope it tastes OK. I will need a refresher next month.
Tuesday, June 06, 2006
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