Tuesday, August 29, 2006
A Pardon
Good news! My car has received a pardon. It was a $16 part that broke. $200 dollars later (some other maintenance done) the car is home.
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
Thursday, June 01, 2006
Nothing more pathetic..
..than a sick baby. Lauren has caught a cold and has a cough and stuffy nose. It is just the saddest thing to listen to her cough. I don't think Nathan or Julia were sick at such a young age. Last night the poor thing was trying to sleep through the coughing but finally woke up and cried. I put her to bed with me.
Sorry for the quiet on the blog front. There is a good reason for it which shall be revealed by picture in a few days.
Sorry for the quiet on the blog front. There is a good reason for it which shall be revealed by picture in a few days.
Thursday, May 25, 2006
Tips for helping families with seriously ill children
I have recently begun reading Blogging Baby. Yesterday I commented on this post about a drive to send cards to a little girl with cancer. I was a little concerned she (well - her parents I suppose) might be overwhelmed with the number of cards and hoped they were on board with it and also wondered if she had any siblings that could also receive cards so they didn't feel left out.
The author of the blog post emailed me and asked me to provide some dos and don'ts for helping families with seriously ill children.
Here is the resulting post.
I have also been contacted about contributing to an article being written for a parenting magazine.
I guess you can't always choose your areas of expertise - I am glad if I can be at all helpful to other families in our situation.
The author of the blog post emailed me and asked me to provide some dos and don'ts for helping families with seriously ill children.
Here is the resulting post.
I have also been contacted about contributing to an article being written for a parenting magazine.
I guess you can't always choose your areas of expertise - I am glad if I can be at all helpful to other families in our situation.
Tuesday, May 23, 2006
It's that time of the year....
Time to get gifts for teachers. I am lucky - I only have two kids in school. I am even more lucky that some of us moms from preschool went in on some gift cards for the 4 teachers that frequent Julia's classroom (more on that in a minute). I do want to thank the teachers - but it is just more complicated than getting a little trinket these days. Nathan has his main teacher and then he has teachers of "specials" ie. art, spanish, PE. I know that some parents get gifts for all of these teachers. I don't even know who these people are so I am not going to do it this year. Take one point off the "good school mom" scale. Then there is a pressure of what to get his main teacher. I think it is pretty widely known these days that teachers have no need for a plastic apple with "world's best teacher" on it. I decided to go with a gift card to Panera. Of course, when you go the gift card route the monetary value is clearly stated - so the value is a whole 'nother decision to make. I went for $10.
Back to Julia. She has one teacher and two aides in her class. The speech teacer also has an office in her classroom and works a little with the kids. None of us like one of the aides and she doesn't say two words to us parents. We reluctantly gave her a gift card as well. Same with the speech teacher - some of us wanted to and some of us did not. In the end we got all four gift cards to a shopping center - $5 a teacher and there were 4 of us.
I recently realized that parents also give gifts to bus drivers. I hadn't thought of that one. I got him a $5 Panera gift card. He is a really good bus driver and has taken good care of Nathan during bus drills. I hope $5 isn't too cheap but he can get a nice lunch off of it.
One of the moms in Nathan's class is putting together a scrapbook. I had to develop some pictures, go pick them up and gather up my scrapbooking supplies and spend about an hour making 2 pages. I am sure it will be nice but when I think of all the time, thought and stress than went into this whole end of the year circus it makes me a little crazy.
Well - I am done...until next Christmas....
Back to Julia. She has one teacher and two aides in her class. The speech teacer also has an office in her classroom and works a little with the kids. None of us like one of the aides and she doesn't say two words to us parents. We reluctantly gave her a gift card as well. Same with the speech teacher - some of us wanted to and some of us did not. In the end we got all four gift cards to a shopping center - $5 a teacher and there were 4 of us.
I recently realized that parents also give gifts to bus drivers. I hadn't thought of that one. I got him a $5 Panera gift card. He is a really good bus driver and has taken good care of Nathan during bus drills. I hope $5 isn't too cheap but he can get a nice lunch off of it.
One of the moms in Nathan's class is putting together a scrapbook. I had to develop some pictures, go pick them up and gather up my scrapbooking supplies and spend about an hour making 2 pages. I am sure it will be nice but when I think of all the time, thought and stress than went into this whole end of the year circus it makes me a little crazy.
Well - I am done...until next Christmas....
Friday, May 19, 2006
Go Big Blue!
Big Blue is the nickname for the church choir I am a part of (our robes are blue). The Gazette's annual Best of the Springs list came out today and Big Blue got a shout out!BEST CHURCH CHOIR
GO! CHOICE:
First Presbyterian Church
On any given Sunday morning there are 110-125 voices soaring in song, accompanied by an awesome brass ensemble, organ and piano — and on some occasions violinists from the Philharmonic. The large sanctuary fills with classical greats, spirituals, familiar sacred songs and rafter-rocking gospel music, as well as original compositions by conservatory-trained Minister of Music. It makes your heart sing.
Thursday, May 18, 2006
One on one
I am spending some time alone with Nathan (well with Lauren too - but she can't talk) for the next few days while Luke and Julia are in Chicago. It is strange because Nathan and I have spent lots of time alone together but it has always been treatment related. In a lot of ways I wish I was the one alone with Julia. I really don't know her nearly as intimately as I know Nathan. I don't know her as a person apart from her brother. This is something that has bothered me for a long time. Sometimes I observe her in a way that makes me feel like I am a stranger watching someone else's child. She was 15 months old when Nathan was diagnosed and she was my BABY. Our bond was so strong. Unfortunately when Nathan was diagnosed I literally felt something break inside me and I didn't even want to see her. It was my way of dealing with the most horrifying of news. I think my gut reaction was that I could no longer let myself have such strong feelings about Julia because the pain of losing her would be unbearable. Until Nathan was diagnosed I had never really imagined losing a child and the shock of finding out I might ( or probably) lose Nathan really changed me. It was not a change for the better but it was a change that let me cope and function the way I needed to. Now, three years later I realize the toll it has taken on me. Everyone tells me how great I have done but they don't see the struggle inside.
I am planning on taking some steps to address my emotional health. I am hoping it is not too late to undo some of the damage.
Luke called me in the middle of my writing this. He and Julia are doing great. He told me that when they started pulling out of the driveway this afternoon she began to cry. I have to admit that really surprised me. I don't know why that should suprise me but I just don't realize the extent of her love for me and I suppose that is a big piece of what I have just been writing about.
Sigh.
I am planning on taking some steps to address my emotional health. I am hoping it is not too late to undo some of the damage.
Luke called me in the middle of my writing this. He and Julia are doing great. He told me that when they started pulling out of the driveway this afternoon she began to cry. I have to admit that really surprised me. I don't know why that should suprise me but I just don't realize the extent of her love for me and I suppose that is a big piece of what I have just been writing about.
Sigh.
Tuesday, May 16, 2006
Yummy lunch
So - I just whipped up the best lunch. I love it when I can grab leftovers out of the fridge and make something delicious. Today it was a one-egg omelette with salmon, asparagus and brie. Fabulous!
Saturday, May 13, 2006
Academia
I just spent the last 24 hours in Illinois and Wisconsin. My father was awarded an honorary doctorate from the University of Wisconsin. This explains his credentials and the reason for the degree. If you scrol down in this document to Ogren you can read a far less techinical excerpt.
It has been a long time since I have been in an academic setting. We attended the graduation ceremony with all the doctoral students. There were around 1,000 graduates. The thought of the amount of hard work and number of years toiling present in that arena was mind-boggling.
After the ceremony we attended a dinner at the Chancellor's house. Sitting at my table was one of my brothers, a professer of botany and his wife, the chair of the botany department, and the university Provost. I have to admit I hadn't a clue what a Provost does. It turns out he is second in command to the Chancellor. It was interesting to hear an overview of his resonsibilities and challenges.
I thoroughly enjoyed the dinner table conversations. As a stay-at-home mom, I rarely find myself around the table with other adults where there are no kids or discussions about kids. It was very refreshing. Intellectually stimulting conversations are very few and far between in my life. I don't stop and think about my place in life very often, but in times like these I realize how different my life is now compared to when I was in the corporate world. I progressed fairly quickly in my career to posistions with important sounding titles and reponsibilities, but a mere 6 years into my career I left to stay home. I am not saying I regret it, but in some ways it is as if these accomplisments and experiences have been erased. They were something I took pride in and my career was something I was really good at. As a stay-at-home mom, I am only average (to below average) in my skills. I think that this is one of the reasons that singing in the church choir has meant so much to me. To be doing something I enjoy and that I am good at adds a lot of quality to my life.
Over the next few days I will write some more about my trip.
It has been a long time since I have been in an academic setting. We attended the graduation ceremony with all the doctoral students. There were around 1,000 graduates. The thought of the amount of hard work and number of years toiling present in that arena was mind-boggling.
After the ceremony we attended a dinner at the Chancellor's house. Sitting at my table was one of my brothers, a professer of botany and his wife, the chair of the botany department, and the university Provost. I have to admit I hadn't a clue what a Provost does. It turns out he is second in command to the Chancellor. It was interesting to hear an overview of his resonsibilities and challenges.
I thoroughly enjoyed the dinner table conversations. As a stay-at-home mom, I rarely find myself around the table with other adults where there are no kids or discussions about kids. It was very refreshing. Intellectually stimulting conversations are very few and far between in my life. I don't stop and think about my place in life very often, but in times like these I realize how different my life is now compared to when I was in the corporate world. I progressed fairly quickly in my career to posistions with important sounding titles and reponsibilities, but a mere 6 years into my career I left to stay home. I am not saying I regret it, but in some ways it is as if these accomplisments and experiences have been erased. They were something I took pride in and my career was something I was really good at. As a stay-at-home mom, I am only average (to below average) in my skills. I think that this is one of the reasons that singing in the church choir has meant so much to me. To be doing something I enjoy and that I am good at adds a lot of quality to my life.
Over the next few days I will write some more about my trip.
Wednesday, May 10, 2006
Thundersnow
I heard some thunder last night. I woke up to snow this morning. I wish I would have peeked out the window to see the lightening flashing through the falling snow.And yes, it does snow in May here. June, July, and August are our only snow-free months.
An update on the sick house...
I did get it Monday night - but only mildly. I still felt like crap yesterday and am better today. Julia was still throwing up yesterday morning so I took her in for a shot of phenergan and she is much better now. I was getting worried about her Monday night so I called the doctor and basically asked them to tell me what dire signs to look for and could I put her to bed in her current state without killing her. The nurse thought I ought to bring her in but when I explained that I was home alone with 3 kids and sick myself, she told me Julia would probably be OK.
Monday, May 08, 2006
Half good, Half bad
That was our weekend. Saturday started with some birthday present shopping and then Luke and Nathan went to a baseball game and Julia, Lauren and I went to a birthday party. We rendezvous'd at a restuarant for dinner and then called it a day. Sunday morning we went off to church. The sermon was titled "Singing in the Dark" and the last hymn sung was "How Can I Keep From Singing?". I didn't hear much of the sermon or the hymn since I left partway through the service to nurse Lauren so I could sing service #2. On the way up to the choir loft I caught sight of Luke in the cry room. It threw me for a loop since I had no ideea why he would have been there. I left early during second service and went back to the cry room and found Nathan fast asleep on the couch. He was feeling rotten and was really out.
We got home and he went to the couch and slept for a few more hours. At this point I was getting pretty worried. Nathan can never just be sick. We always have to wonder if it is cancer. Part of me was wishing he had a fever to explain the feeling bad. The other part was glad he didn't have a fever since unexplained fevers were his first symptom of cancer. It is a lose/lose situation.
Julia, Lauren and I went to another birthday party. Luke texted me that Nathan was awake and eating. On the way home I got a call asking how to use the steam cleaner. Nathan had thrown up. So - that was good news - seemed like it was definately a bug.
At about 10:30 last night we heard a hearth wrenching scream and found Julia throwing up in her bed. (yup - definately not cancer) Luke had to get up at 4:00 am to go on a business trip so I sent him to the basement to sleep. I was awake to say goodbye since Julia threw up every half hour all night.
So we will all be hanging around home all day. I am hoping Lauren and I (well - Luke too on his trip) don't get this.
We got home and he went to the couch and slept for a few more hours. At this point I was getting pretty worried. Nathan can never just be sick. We always have to wonder if it is cancer. Part of me was wishing he had a fever to explain the feeling bad. The other part was glad he didn't have a fever since unexplained fevers were his first symptom of cancer. It is a lose/lose situation.
Julia, Lauren and I went to another birthday party. Luke texted me that Nathan was awake and eating. On the way home I got a call asking how to use the steam cleaner. Nathan had thrown up. So - that was good news - seemed like it was definately a bug.
At about 10:30 last night we heard a hearth wrenching scream and found Julia throwing up in her bed. (yup - definately not cancer) Luke had to get up at 4:00 am to go on a business trip so I sent him to the basement to sleep. I was awake to say goodbye since Julia threw up every half hour all night.
So we will all be hanging around home all day. I am hoping Lauren and I (well - Luke too on his trip) don't get this.
Friday, May 05, 2006
How 'bout some cheese curds?
I cannot believe it is Friday again. The days are flying by recently. I last posted on Monday, yet I can barely recall what has happened since then. Luke and I are still getting over our colds and are finally feeling human again.
I guess this week has just been filled with the normal stuff. On Tuesday morning I did some shopping while Nathan and Julia were at school. I got done and still had some time to kill. I decided to have an early lunch at Culvers. I was craving some cheese curds. None of us had even considered trying them but we went there when Luke's parents visited and they mistakenly gave his mom some some instead of onion rings. Oh my god were they good! Fried cheese...good stuff.
We have a busy weekend. I have a dinner for choir tonight. Tomorrow,Luke and Nathan are going to a minor league baseball game and Julia, Lauren and I are going to a birthday party. Sunday we have church in the morning and another birthday party in the afternoon.
I have been lazing this morning. Lauren was very fussy and then she fell asleep on me so I just let her stay on me while I worked on the pictures for our April web page. She is awake now so I need to play UNO with Julia and take a shower.
Monday, May 01, 2006
Updated
I updated Nathan's caringbridge site tonight. Having just done so - I am in no position to blog here tonight - but since his site has no feed I thought I'd give a shout out here.
I will close with a random cute baby picture.
I will close with a random cute baby picture.
Photojojo » Tired: Your Photo on a Box of Wheaties; Wired: Your Photo on a Bottle of Pop
Now this is a cool. I am just trying to decide what a good picture would be and for whom.
Photojojo » Tired: Your Photo on a Box of Wheaties; Wired: Your Photo on a Bottle of Pop
Photojojo » Tired: Your Photo on a Box of Wheaties; Wired: Your Photo on a Bottle of Pop
Saturday, April 29, 2006
Roundup
I thought I would do a general catch-up type of post today.
We have all been passing around a really nasty cold. Remarkably, I was the last to get it this time. Luke has avoided all the sicknesses this year until this one and I got it after him. Nathan got it first and then Julia. We think Lauren has it but it is hard to tell.
So - other than the bad cold thing what has been going on?
Well - feeding and playing with Lauren take up like 80% of my time it seems - especially when she doesn't nap - which is most of the time. I have been working on travel plans to New York in June for Nathan's scans. I have also spent some time on the phone with our insurance company and New York Presbyterian Hospital. This hospital is actually in-network for us, but of course it wasn't that simple. Nathan stayed in their PICU after his surgery since Memorial Sloan Kettering doesn not have a PICU. The attending physician in the PICU is out-of network. Well - it is not like we could pick and choose who attended to Nathan. I don't know how a hospital can be in network and then have it's inpatient doctors not be. So - the insurance company is resubmitting it. It might not seem like a big deal - having to pay 80% of this physician's fee. However - the insurance company has their "reasonable" charge amounts and will pay 80% of those. There is a big gulf between what this doctor charged and the amount the insurance company is willing to pay. So.... I guess we will see what happens. They are trying to collect from us and they have put it on hold for 30 days. If I have to appeal again there might be a choice of a negative mark on our credit or paying more than we owe. This is not the first time this has happened. Ugh.
What else? We have some friends moving back in town after moving to Florida a year and a half ago. The husband was here working this week and we had him over to dinner. It was a good excuse to cook and clean.
I have been playing my guitar and the piano lately. We moved our keyboard to the living room from the basement so I could use it more. When I pick up the guitar, often Nathan joins me on his ukelele ad Julia on the keyboard. I can stand that for about 2 minutes.
Fun task for today....steam cleaning strawberry milk out of the van.
This has gotten long enough I will save updates on everyone else for another entry.
We have all been passing around a really nasty cold. Remarkably, I was the last to get it this time. Luke has avoided all the sicknesses this year until this one and I got it after him. Nathan got it first and then Julia. We think Lauren has it but it is hard to tell.
So - other than the bad cold thing what has been going on?
Well - feeding and playing with Lauren take up like 80% of my time it seems - especially when she doesn't nap - which is most of the time. I have been working on travel plans to New York in June for Nathan's scans. I have also spent some time on the phone with our insurance company and New York Presbyterian Hospital. This hospital is actually in-network for us, but of course it wasn't that simple. Nathan stayed in their PICU after his surgery since Memorial Sloan Kettering doesn not have a PICU. The attending physician in the PICU is out-of network. Well - it is not like we could pick and choose who attended to Nathan. I don't know how a hospital can be in network and then have it's inpatient doctors not be. So - the insurance company is resubmitting it. It might not seem like a big deal - having to pay 80% of this physician's fee. However - the insurance company has their "reasonable" charge amounts and will pay 80% of those. There is a big gulf between what this doctor charged and the amount the insurance company is willing to pay. So.... I guess we will see what happens. They are trying to collect from us and they have put it on hold for 30 days. If I have to appeal again there might be a choice of a negative mark on our credit or paying more than we owe. This is not the first time this has happened. Ugh.
What else? We have some friends moving back in town after moving to Florida a year and a half ago. The husband was here working this week and we had him over to dinner. It was a good excuse to cook and clean.
I have been playing my guitar and the piano lately. We moved our keyboard to the living room from the basement so I could use it more. When I pick up the guitar, often Nathan joins me on his ukelele ad Julia on the keyboard. I can stand that for about 2 minutes.
Fun task for today....steam cleaning strawberry milk out of the van.
This has gotten long enough I will save updates on everyone else for another entry.
Friday, April 28, 2006
April in Colorado
Yesterday the kids were in shorts. It's kind of hard to see but there is snow in that picture.
Subscribe to:
Posts (Atom)