Monday, November 29, 2004 7:24 AM CST
Hello everyone - I hope you all had a wonderful Thanksgiving. We certainly did. The kids have been loving having Grandma C and Grandpa Bill here.
We didn't do much but stay home the whole time. It was very relaxing. Some of us adults got to go see the Polar Express. Now we just need to take the kids! We went because we have an IMAX theater here that was showing it in 3D and the kids couldn't have done that. It was amazing! My mom and I did some shopping and there was much watching of football and basketball. All in all a very normal good Thanksgiving.
I have caught the kids cold and have gotten it bad. I am hoping to be on the mend today. Luke left this morning to go on a business trip and my parents are leaving this afternoon. I have to do choir things 4 times this week and so I hope my voice recovers.
We are having some very wintery weather. Nathan was begging to go outside to play in the snow yesterday but since the wind chill was at zero I had to tell him no. Currently the temperature outside is 8 degrees! He will get to go to preschool today. The schools are 2 hours delayed but that will not affect him.
Nathan goes to see his oncologist on Thursday. It is just a routine visit with a blood draw. I also need to talk to his doctor about his scans. He is due at the end of December but we will wait until the beginning of January. I am going to try to get prior scans from New York so there is better comparisons this time.
That is about all that is going on here. We got the Christmas lights put up on the house before Luke left and the kids are very happy about that. It is going to be so much fun to decorate the tree with them this year.
I will update again Thursday evening or Friday morning.
I hope you all have a good week.
Thursday, November 25, 2004
Thursday, November 25, 2004 7:48 AM CST
Happy Thanksgiving!
We are so incredibly thankful this year. The list could go on and on. I will try to hit the highlights.
We are thankful for:
The current state of good health of our entire family
Our extended families who have been such a great supprt to us.
Our wonderful friends who support us but at times simply make us laugh.
All of you who read this journal and keep us in your thoughts and prayers.
This list could go on and on and encompass every aspect of our lives, but I will end it here. We have really learned to be thankful for the small things and I think that is the most important thing. Right at this moment I can look over and see my children in their pajamas sitting together on the couch and that is all I need to make me happy right now.
I hope you all have a wonderful Thanksgiving and can spend the day with those you love.
Happy Thanksgiving!
We are so incredibly thankful this year. The list could go on and on. I will try to hit the highlights.
We are thankful for:
The current state of good health of our entire family
Our extended families who have been such a great supprt to us.
Our wonderful friends who support us but at times simply make us laugh.
All of you who read this journal and keep us in your thoughts and prayers.
This list could go on and on and encompass every aspect of our lives, but I will end it here. We have really learned to be thankful for the small things and I think that is the most important thing. Right at this moment I can look over and see my children in their pajamas sitting together on the couch and that is all I need to make me happy right now.
I hope you all have a wonderful Thanksgiving and can spend the day with those you love.
Saturday, November 20, 2004
Saturday, November 20, 2004 10:14 PM CST
Hello - I didn't realize it had been so long since I had updated (thanks, Ashley for your concern).
With Luke being gone all week, we were all just trying to get through. Julia was pretty emotional all week. She is just not used to Luke being gone. I am trying to remember what we did all week. I know we kept ourselves pretty busy. On Friday we went swimming. The kids had a blast. The kid area of the pool is all 1 to 1.5 feet and has a little waterslide and they loved it. Unfortunately, Julia gets cold very easily so we cold only swim for about 45 minutes before she was shivering. Luke came home Friday night. Nathan waited by the window for a half an hour waiting for him. He actually got "sweaty and hot" waiting for him. He breaks out in these sweats and I have been trying to determine the cause so it was interesting to see it connected to anxiety. They were both very happy to see their Daddy.
We are all looking forward to the week ahead. Nathan's class has a little Thanksgiving party on Tuesday that I will attend. My parents are arriving Tuesday night for the holiday. Nathan is very happy that we will be having pumpkin pie because it is one of his favorite foods. Speaking of favorite foods, he has to bring a favorite food to the party at preschool and he chose corn. I will have to attempt to keep it a little bit warm on the way over there! It will be interresting to see what the other kids choose. His class also had paper feathers to take home and write what they are thankful for and the teacher created a turkey out of them. We did this pretty soon after we arrived home and so his two were,"that his cancer treatments were done" and "to be home with his family". It was fun to see what the kids chose. A few had their families, one had their god, and another which I enjoyed was that she was thankful for waffles.
So that is the wrap up around here. Nothing medical is happening until Dec. 2 when Nathan will see his oncologist and have his blood drawn to send to NY.
I almost forgot to say....Tomorrow is one year since Nathan's surgery in New York when the remaining tumor was removed! How lucky we are to be here a year later, done with treatment and with Nathan currently happy and healthy.
Hello - I didn't realize it had been so long since I had updated (thanks, Ashley for your concern).
With Luke being gone all week, we were all just trying to get through. Julia was pretty emotional all week. She is just not used to Luke being gone. I am trying to remember what we did all week. I know we kept ourselves pretty busy. On Friday we went swimming. The kids had a blast. The kid area of the pool is all 1 to 1.5 feet and has a little waterslide and they loved it. Unfortunately, Julia gets cold very easily so we cold only swim for about 45 minutes before she was shivering. Luke came home Friday night. Nathan waited by the window for a half an hour waiting for him. He actually got "sweaty and hot" waiting for him. He breaks out in these sweats and I have been trying to determine the cause so it was interesting to see it connected to anxiety. They were both very happy to see their Daddy.
We are all looking forward to the week ahead. Nathan's class has a little Thanksgiving party on Tuesday that I will attend. My parents are arriving Tuesday night for the holiday. Nathan is very happy that we will be having pumpkin pie because it is one of his favorite foods. Speaking of favorite foods, he has to bring a favorite food to the party at preschool and he chose corn. I will have to attempt to keep it a little bit warm on the way over there! It will be interresting to see what the other kids choose. His class also had paper feathers to take home and write what they are thankful for and the teacher created a turkey out of them. We did this pretty soon after we arrived home and so his two were,"that his cancer treatments were done" and "to be home with his family". It was fun to see what the kids chose. A few had their families, one had their god, and another which I enjoyed was that she was thankful for waffles.
So that is the wrap up around here. Nothing medical is happening until Dec. 2 when Nathan will see his oncologist and have his blood drawn to send to NY.
I almost forgot to say....Tomorrow is one year since Nathan's surgery in New York when the remaining tumor was removed! How lucky we are to be here a year later, done with treatment and with Nathan currently happy and healthy.
Monday, November 15, 2004
Monday, November 15, 2004 4:43 PM CST
Hello,
Nothing much going on around here. The kids got to go to Chuck E Cheese AGAIN this past Friday and had a blast. Saturday we ran some errands as a family and then Sunday morning Luke left on a business trip. The kids and I went to a Candlelighters Thanksgiving dinner. The kids had lots of fun becuase there was a large dance floor in the middle of the room and they spent much of the time just running around. There was a dancing demonstration and then Julia and Nathan danced together. It was very cute.
They have both been pretty emotional yesterday and today. I am hoping they will be good tonight because a friend is watching them while I go to Choir sectional rehearsals. Tomorrow night they will have a babysitter at the house while I go to regular choir practive. I am crossing my fingers that they are good!
On the medical front...Nathan gets his second Flu shot on Wednesday. He will have to have his blood drawn for HAMA in the next few weeks but I am still waiting to receive a date for that. They need the blood for the research. I have been reassured that he is done even if it is negative. If it IS negative that would not be a good thing because it would mean he has lost his immunity he built up - but they said it usually stays positive at this point in treatment. Either way - they probably won't even let me know!
Hello,
Nothing much going on around here. The kids got to go to Chuck E Cheese AGAIN this past Friday and had a blast. Saturday we ran some errands as a family and then Sunday morning Luke left on a business trip. The kids and I went to a Candlelighters Thanksgiving dinner. The kids had lots of fun becuase there was a large dance floor in the middle of the room and they spent much of the time just running around. There was a dancing demonstration and then Julia and Nathan danced together. It was very cute.
They have both been pretty emotional yesterday and today. I am hoping they will be good tonight because a friend is watching them while I go to Choir sectional rehearsals. Tomorrow night they will have a babysitter at the house while I go to regular choir practive. I am crossing my fingers that they are good!
On the medical front...Nathan gets his second Flu shot on Wednesday. He will have to have his blood drawn for HAMA in the next few weeks but I am still waiting to receive a date for that. They need the blood for the research. I have been reassured that he is done even if it is negative. If it IS negative that would not be a good thing because it would mean he has lost his immunity he built up - but they said it usually stays positive at this point in treatment. Either way - they probably won't even let me know!
Wednesday, November 10, 2004
Wednesday, November 10, 2004 12:07 AM CST
Hello from cold and blustery Colorado. I wish we could stay in today but we have been out and about taking Nathan to the pediatrician. I tried to get her all caught up on his current state of health. He had to have 4 shots today for immunizations and will have to go back in a week for a flu shot. He handled it pretty well.
He has enjoyed being back in preschool and I am so happy to know he won't have any more extended absences.
Everyone seems to be calming down and getting into the swing of things now. Of course Luke will be traveling for work next week and so that will be another disruption - but at least a "normal" one!
We came home form a very, very large bill from the hospital in New York. Our old insurance had not paid anything for the antibodies the whole time. Fortunately, when I called the very rude person in at the hospital I found out all balances were paid the last week in October. That is a big relief. Our new insurance is not yet billing correctly, but we have been in contact with someone and we are being told it is getting fixed.
That is about all that is going on around here. Thanks for checking in.
Hello from cold and blustery Colorado. I wish we could stay in today but we have been out and about taking Nathan to the pediatrician. I tried to get her all caught up on his current state of health. He had to have 4 shots today for immunizations and will have to go back in a week for a flu shot. He handled it pretty well.
He has enjoyed being back in preschool and I am so happy to know he won't have any more extended absences.
Everyone seems to be calming down and getting into the swing of things now. Of course Luke will be traveling for work next week and so that will be another disruption - but at least a "normal" one!
We came home form a very, very large bill from the hospital in New York. Our old insurance had not paid anything for the antibodies the whole time. Fortunately, when I called the very rude person in at the hospital I found out all balances were paid the last week in October. That is a big relief. Our new insurance is not yet billing correctly, but we have been in contact with someone and we are being told it is getting fixed.
That is about all that is going on around here. Thanks for checking in.
Sunday, November 7, 2004
Sunday, November 7, 2004 7:01 PM CST
So - one of the first things Nathan said to me when he found out he didn't have to have anymore treatment was that if he was done with treatment than he should have a cake a celebrate. We had recently attended an event where there was a cake for a boy done with treatment. So I told him that of course we would and last night we had that cake! So - that is what the new picture on his page is from.
We are settling in. Julia has been extrememly emotional and having a hard time, but she is definately happy to have everyone home. She and Nathan have been doing lots of playing and a little more fighting than usual but are having lots of fun together.
Nathan is telling everyone he sees that he is off-treatment. I am sure he will tell everyone at preschool tomorrow.
Nathan will go to the pediatrician on Wednesday to get started on his revaccinations. It will be nice to get an opinion on some of his lesser issues from a non-oncologist.
I plan to update our family website for October very soon - so keep an eye out for the new pictures...we have a lot.
Thanks for all the guestbook entries and emails. We are glad to be able to share some good news with all of you!
So - one of the first things Nathan said to me when he found out he didn't have to have anymore treatment was that if he was done with treatment than he should have a cake a celebrate. We had recently attended an event where there was a cake for a boy done with treatment. So I told him that of course we would and last night we had that cake! So - that is what the new picture on his page is from.
We are settling in. Julia has been extrememly emotional and having a hard time, but she is definately happy to have everyone home. She and Nathan have been doing lots of playing and a little more fighting than usual but are having lots of fun together.
Nathan is telling everyone he sees that he is off-treatment. I am sure he will tell everyone at preschool tomorrow.
Nathan will go to the pediatrician on Wednesday to get started on his revaccinations. It will be nice to get an opinion on some of his lesser issues from a non-oncologist.
I plan to update our family website for October very soon - so keep an eye out for the new pictures...we have a lot.
Thanks for all the guestbook entries and emails. We are glad to be able to share some good news with all of you!
Wednesday, November 3, 2004
Wednesday, November 3, 2004 8:07 PM CST
Hi - I am exhausted tonight so this will not be long.
NAthan is thrilled that he is done with treatment. He wants to tell everyone that I talk to on the phone.
We went in today to meet with the doctor and have Nathan's IV removed. The doctor basically said that we are done, and that we have done everything we could and we shouldn't worry about being off-treatment. We will continue to scan Nathan every three months for at least the next year (at home). If all goes well and he is still NED this time next year he will start to go to the long-term survivors clinic to be monitored for after-effects.
I moved up our flights to tomorrow night. That was the soonest I wanted to leave because I didn't want to scurry around doing things. We have been saying our goodbyes and we went to Times Square one more time today.
So - we will be home tomorrow and I will update again soon.
Hi - I am exhausted tonight so this will not be long.
NAthan is thrilled that he is done with treatment. He wants to tell everyone that I talk to on the phone.
We went in today to meet with the doctor and have Nathan's IV removed. The doctor basically said that we are done, and that we have done everything we could and we shouldn't worry about being off-treatment. We will continue to scan Nathan every three months for at least the next year (at home). If all goes well and he is still NED this time next year he will start to go to the long-term survivors clinic to be monitored for after-effects.
I moved up our flights to tomorrow night. That was the soonest I wanted to leave because I didn't want to scurry around doing things. We have been saying our goodbyes and we went to Times Square one more time today.
So - we will be home tomorrow and I will update again soon.
Tuesday, November 2, 2004
Tuesday, November 2, 2004 10:45 AM CST
Hello,
No pain again today, but a lot of grumpy. I wonder if he felt some , but he says he didn't. When I tried to explain why we could leave yesterday I told him that after a while he might not have pain anymore with antibodies and that he would eventually stop antibodies. I was trying very carefully not to make him think that lack of pain=no more antibodies but I think he took it away from the conversation because he told me at lunch that he didn't have pain and so he didn't need any more antibodes. Sigh... So - he may not have told me about the pain. Anyway - they drew him blood for the HAMA test so we will find out this evening. I guess I am expecting to hear it is negative. I am glad it is being run because I will know to expect pain tomorrow if it is negative and I can handle it alot better when I know what to expect.
We had a good afternoon yesterday. A friend sent him $3 (thanks Judy H.) and we went off to the toy store to spend it (he bought a taxi). After that we walked to the book store and then to the pet store(Nathan wanted to buy a toy for our doggie dinner host, Fergus) and then to have dinner at John and Judy's with Joan and Bill. Nathan WALKED all of this- we had no stroller. The walk was around one and half miles. I was very impressed with his stamina and his desire because he wanted to walk at one point when I offered the subway.
We had a wonderful dinner and came home and went right to bed.
We may go to Times Square this afternoon. I promised we would do it while we were here and since there is a good chance tomorrow and Thursday could be bad pain days I think we wil do it today.
Keep your fingers crossed for the HAMA results. I will update late - she promised to call with the results either way.
********************************************
5:11 EST
HAMA Positive! Nathan is DONE with treatment.
*********************************************
Hello,
No pain again today, but a lot of grumpy. I wonder if he felt some , but he says he didn't. When I tried to explain why we could leave yesterday I told him that after a while he might not have pain anymore with antibodies and that he would eventually stop antibodies. I was trying very carefully not to make him think that lack of pain=no more antibodies but I think he took it away from the conversation because he told me at lunch that he didn't have pain and so he didn't need any more antibodes. Sigh... So - he may not have told me about the pain. Anyway - they drew him blood for the HAMA test so we will find out this evening. I guess I am expecting to hear it is negative. I am glad it is being run because I will know to expect pain tomorrow if it is negative and I can handle it alot better when I know what to expect.
We had a good afternoon yesterday. A friend sent him $3 (thanks Judy H.) and we went off to the toy store to spend it (he bought a taxi). After that we walked to the book store and then to the pet store(Nathan wanted to buy a toy for our doggie dinner host, Fergus) and then to have dinner at John and Judy's with Joan and Bill. Nathan WALKED all of this- we had no stroller. The walk was around one and half miles. I was very impressed with his stamina and his desire because he wanted to walk at one point when I offered the subway.
We had a wonderful dinner and came home and went right to bed.
We may go to Times Square this afternoon. I promised we would do it while we were here and since there is a good chance tomorrow and Thursday could be bad pain days I think we wil do it today.
Keep your fingers crossed for the HAMA results. I will update late - she promised to call with the results either way.
********************************************
5:11 EST
HAMA Positive! Nathan is DONE with treatment.
*********************************************
Monday, November 1, 2004
Monday, November 1, 2004 11:08 AM CST
Hello -
We had a wonderful weekend. I will back up to Friday first.
Nathan's pain was somewhat less than Thursday but still pretty bad. We were trying to catch the train at a particular time and so as it got later I was trying to convince him to leave the hospital but he didn't want to go and was upset about that and then wanted his Halloween costume off but wanted to go outside with short and a t-shirt. She we had a big struggle getting him dressed but he calmed down fairly soon and we caught a taxi and got to the train station and were on out way. We spent Friday afternoon at Garrett's house and then went to a little Halloween parade where the kids dressed up and paraded from the fire station to the elementrary school. Nathan enjoyed that mainly because we were all waling behind a fire truck.
Saturday we went to a pumpkin patch and picked out pumpkins and then we went to Garrett's sister's soccer game. It was cold and wet but the boys enjoyed playing at the playground nevertheless. Later in the afternoon we carved pumpkins.
Sunday we had another soccer game and then dinner and tick or treating. Nathan didn't trick or treat for too long but he had a great time and afterwards sorted and lined up all his candy and was very pleased about it all.
We caught an early train this morning and came back to the city. Nathan had a great time playing with Garrett and just quietly playing on the floor with trucks in such a nice homey atmosphere. He told me he loved being there and was sad this morning to leave. I also had a great time hanging out. They are a great family.
Today it took 4 attempts to get an IV started. Nathan was obviously upset but did a great job. Once again there was no pain or hives. I think they may go ahead and draw his blood for HAMA tomorrow but I am not sure. There is a good chance he will do what he did last week and get pain tomorrow or Wednesday. Either way, I will take any pain-free day I can get and so it was such a relief today. Nathan is now playing in the hospital playroom after having lunch. He never gets to play there because he is too wiped out after his treatments. **I am adding a little here an hour later because after I wrote this Nathan came to get me and wanted to go back to his room. He meant his hospital room. I told him we were done and he got upset and said he didn't have his pain yet so we couldn't go. He wouldn't belive me so I had a nurse tell him. Last week he told me he still had pain on those days but today I guess he truly had none. **
I will try to put some pictures on later.
Julia and Luke also had a good Halloween. Apparently at every house Julia went to she kept saying to the people after she had her candy "and some for my Daddy too?" He had to tell them he didn't coach her to say that!
Gotta go - will update later
Hello -
We had a wonderful weekend. I will back up to Friday first.
Nathan's pain was somewhat less than Thursday but still pretty bad. We were trying to catch the train at a particular time and so as it got later I was trying to convince him to leave the hospital but he didn't want to go and was upset about that and then wanted his Halloween costume off but wanted to go outside with short and a t-shirt. She we had a big struggle getting him dressed but he calmed down fairly soon and we caught a taxi and got to the train station and were on out way. We spent Friday afternoon at Garrett's house and then went to a little Halloween parade where the kids dressed up and paraded from the fire station to the elementrary school. Nathan enjoyed that mainly because we were all waling behind a fire truck.
Saturday we went to a pumpkin patch and picked out pumpkins and then we went to Garrett's sister's soccer game. It was cold and wet but the boys enjoyed playing at the playground nevertheless. Later in the afternoon we carved pumpkins.
Sunday we had another soccer game and then dinner and tick or treating. Nathan didn't trick or treat for too long but he had a great time and afterwards sorted and lined up all his candy and was very pleased about it all.
We caught an early train this morning and came back to the city. Nathan had a great time playing with Garrett and just quietly playing on the floor with trucks in such a nice homey atmosphere. He told me he loved being there and was sad this morning to leave. I also had a great time hanging out. They are a great family.
Today it took 4 attempts to get an IV started. Nathan was obviously upset but did a great job. Once again there was no pain or hives. I think they may go ahead and draw his blood for HAMA tomorrow but I am not sure. There is a good chance he will do what he did last week and get pain tomorrow or Wednesday. Either way, I will take any pain-free day I can get and so it was such a relief today. Nathan is now playing in the hospital playroom after having lunch. He never gets to play there because he is too wiped out after his treatments. **I am adding a little here an hour later because after I wrote this Nathan came to get me and wanted to go back to his room. He meant his hospital room. I told him we were done and he got upset and said he didn't have his pain yet so we couldn't go. He wouldn't belive me so I had a nurse tell him. Last week he told me he still had pain on those days but today I guess he truly had none. **
I will try to put some pictures on later.
Julia and Luke also had a good Halloween. Apparently at every house Julia went to she kept saying to the people after she had her candy "and some for my Daddy too?" He had to tell them he didn't coach her to say that!
Gotta go - will update later
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