Friday, December 31, 2004 5:42 PM CST
Hello - I hope you are all set to have a wonderful New Years Eve.
I am updating because the scan schedule has imploded and we had to start again.
I got a call yesterday afternoon (after the clinic was closed for the holiday) from nuclear med saying that due to the holiday the MIBG isotope would be unavailable Tuesday.
I paged Nathan's doctor and he was going to look into finding a different day for the Bone Marrows. Well - so this is what we have ended up with.
Tuesday - nothing now.
Wednesday - Clinic visit to insert IV and blood draw and MIBG injection.
Thursday - MIBG scan in the morning. They will look at it right away to see if he needs a repeat scan on Friday. If not, he will have the CT scan on Thursday afternoon as planned.
Friday - If needed, second MIBG scan and rescheduled CT scan.
Next Thursday (Jan 13) Tenatively....please hope this works out! - Bone marrow aspirations and biopsies.
So - it will have to be done with 2 IVs - which I was trying to avoid. That's the way it is though.
The bone marrows just could not be done this week. I have picked the next Thursday because the kids are starting swimming lesson on the 10th and I didn't want Nathan to have to miss. Plus he can't get wet for a few days following.
I am excited about the lessons. Now that Julia is turning 3 and Nathan is still 4, they can be in the same class together and without me in the pool.
Now - I am jsut hoping for no repeat CT scan...the IV can come out a day earllier and the kids and I can go to a swimming playgroup we have been wanting to attend on Friday.
More importantly, I am hoping for CLEAN SCANS!
Happy New Years!
Wednesday, December 29, 2004
Wednesday, December 29, 2004 10:10 PM CST
Hello,
We finally have scan dates. Unfortunately my anxiety level is at an all time high anticipating these scans. Nathan has been very tired lately which makes me nervous. It is also the first scans off-treatment and would be so devestating for him to relapse now.
The schedule also, is not perfect - but that is how it goes. There is potential for it to get all mucked up if he has to repeat his MIBG scan like he did last time.
Anyway - here goes:
Tues, Jan 4 - 11:30 clinic visit, physical - possibly let them place IV but only if certain nurses are working.
Tues, Jan4 - 2:30 MIBG injection
Wed, Jan 5 - 9:30 MIBG scan
Thurs, Jan 6 - Possible 9:00 MIBG scan (if first one is too bright - this happened last time since he did not have a BM before the scan)
Thurs, Jan 6 - 9:30 Bone Marrow Aspirations (will be pushed to 10:30 or later so if have to repeat MIBG scan and he will have to go even longer without eating)
Thurs, Jan 6 - 2:40 - CT scan. This may be a problem if Bone Marrows are pushed late because he has to be able to eat lunch by 12:40 when he will have to begin drinking his oral contrast for the scan at which point he cannot eat or drink anything until after his scan. If htis happens I will likely rescheudle the CT scan until the next day instead of starving him. He is very very very crabby after sedation and there is no way I could get him to start drinking the contrast right away.
So - anyway - we REALLY need him NOT to have to do the MIBG scan again on Thursday. We'll see what happens.
What else is going on? Well - Nathan is finally over his colds and his nose is again running clear like a fountain due to allergies. We may try some allergy medicines again for him. If you recall, his nose was like this a lot during chemo. We tried some medicines that didn't help, but maybe his immune system has changed again. It is really bad - he has a constant puddle below his nose.
I am looking forward to the New Year...I am praying it is a year of no major medical treatment for Nathan.
Hello,
We finally have scan dates. Unfortunately my anxiety level is at an all time high anticipating these scans. Nathan has been very tired lately which makes me nervous. It is also the first scans off-treatment and would be so devestating for him to relapse now.
The schedule also, is not perfect - but that is how it goes. There is potential for it to get all mucked up if he has to repeat his MIBG scan like he did last time.
Anyway - here goes:
Tues, Jan 4 - 11:30 clinic visit, physical - possibly let them place IV but only if certain nurses are working.
Tues, Jan4 - 2:30 MIBG injection
Wed, Jan 5 - 9:30 MIBG scan
Thurs, Jan 6 - Possible 9:00 MIBG scan (if first one is too bright - this happened last time since he did not have a BM before the scan)
Thurs, Jan 6 - 9:30 Bone Marrow Aspirations (will be pushed to 10:30 or later so if have to repeat MIBG scan and he will have to go even longer without eating)
Thurs, Jan 6 - 2:40 - CT scan. This may be a problem if Bone Marrows are pushed late because he has to be able to eat lunch by 12:40 when he will have to begin drinking his oral contrast for the scan at which point he cannot eat or drink anything until after his scan. If htis happens I will likely rescheudle the CT scan until the next day instead of starving him. He is very very very crabby after sedation and there is no way I could get him to start drinking the contrast right away.
So - anyway - we REALLY need him NOT to have to do the MIBG scan again on Thursday. We'll see what happens.
What else is going on? Well - Nathan is finally over his colds and his nose is again running clear like a fountain due to allergies. We may try some allergy medicines again for him. If you recall, his nose was like this a lot during chemo. We tried some medicines that didn't help, but maybe his immune system has changed again. It is really bad - he has a constant puddle below his nose.
I am looking forward to the New Year...I am praying it is a year of no major medical treatment for Nathan.
Sunday, December 26, 2004
Sunday, December 26, 2004 4:59 PM CST
Hello -
I hope you all had a Merry Christmas. We certainly did.
Luke's parents and sister arrived on the 23rd. We have been having a wonderful time being together and the kids love all the attention!
We had so many presents under our tree and had so much fun opening them all.
The kids didn't get up until 6:30 on Christmas morning - so that was fine. We were worried they would be up earlier than that.
Luke's brother arrives today for a short visit and then everyone is leaving on Tuesday.
There is no word yet on scan dates. I talked to the scheduler early in the week so I am hoping to hear something early this coming week.
I will write again midweek.
Merry Christmas!
Hello -
I hope you all had a Merry Christmas. We certainly did.
Luke's parents and sister arrived on the 23rd. We have been having a wonderful time being together and the kids love all the attention!
We had so many presents under our tree and had so much fun opening them all.
The kids didn't get up until 6:30 on Christmas morning - so that was fine. We were worried they would be up earlier than that.
Luke's brother arrives today for a short visit and then everyone is leaving on Tuesday.
There is no word yet on scan dates. I talked to the scheduler early in the week so I am hoping to hear something early this coming week.
I will write again midweek.
Merry Christmas!
Saturday, December 18, 2004
Saturday, December 18, 2004 1:53 PM CST
Hello - I hope everyone is having a good weekend.
We had a good week last week. Both kids were dealing with their colds at the beginning of the week so other than preschool - we didn't do very much.
Thursday, Nathan's preschool had a holiday party. Julia and and attended and had a very nice time. Julia was so excited to go - she held my hand and skipped on our way to his building. She didn't want to leave when it was time to go. Hopefully she will attend preschool there 2 mornings a week next fall.
Yesterday we spent a few hours at McDonalds for a playgroup and they enjoyed climbing all over the place while I enjoyed talking with friends.
Nathan is very cranky today. He has been SO cranky lately and I really hope it is him getting over his cold. The cancer mom inside me is concerned that he is feeling bad and that is why he is cranky. We have sent him to go nap and are hoping that will help things.
I had choir practice this morning to gear up for services tomorrow and Christmas Eve. We all have to sing all 3 services tomorrow morning and there are 5 services Christmas Eve but I will only sing three because I am really looking forward to tucking my kids into bed this year on Christmas Eve. It will mean so much to me after being away last year.
We got an unexpected treat last night. Nathan and Julia's day care provider called to say she was opening the day care from 5 - 8 last night and so the kids were all there in their PJs and ate pizza and watched some Christmas movies while Luke and I had a nice dinner out and did some window shopping downtown (Thanks Tammy!).
Nathan still has preschool next Monday and Tuesday and then they will go to day care on Wednesday and Luke's parents and sister will arrive on Thursday. I can't believe Christmas is only a week away. I can't wait!
Safe travels for those of you going away this week.
Hello - I hope everyone is having a good weekend.
We had a good week last week. Both kids were dealing with their colds at the beginning of the week so other than preschool - we didn't do very much.
Thursday, Nathan's preschool had a holiday party. Julia and and attended and had a very nice time. Julia was so excited to go - she held my hand and skipped on our way to his building. She didn't want to leave when it was time to go. Hopefully she will attend preschool there 2 mornings a week next fall.
Yesterday we spent a few hours at McDonalds for a playgroup and they enjoyed climbing all over the place while I enjoyed talking with friends.
Nathan is very cranky today. He has been SO cranky lately and I really hope it is him getting over his cold. The cancer mom inside me is concerned that he is feeling bad and that is why he is cranky. We have sent him to go nap and are hoping that will help things.
I had choir practice this morning to gear up for services tomorrow and Christmas Eve. We all have to sing all 3 services tomorrow morning and there are 5 services Christmas Eve but I will only sing three because I am really looking forward to tucking my kids into bed this year on Christmas Eve. It will mean so much to me after being away last year.
We got an unexpected treat last night. Nathan and Julia's day care provider called to say she was opening the day care from 5 - 8 last night and so the kids were all there in their PJs and ate pizza and watched some Christmas movies while Luke and I had a nice dinner out and did some window shopping downtown (Thanks Tammy!).
Nathan still has preschool next Monday and Tuesday and then they will go to day care on Wednesday and Luke's parents and sister will arrive on Thursday. I can't believe Christmas is only a week away. I can't wait!
Safe travels for those of you going away this week.
Monday, December 13, 2004
Hello,
I am finally able to catch my breath and update.
We had a reasonably good week, in that we got through it with Luke gone. As I said before there was lots of babysitting and that went fine. By the third night Julia wasn't too thrilled about it but she was just talking to be about it and not upset. The next day she sang a little song about how mommy was going to stay home with her tonight.
Friday we went to Chuck E Cheese so they were very happy about that. Outr playgroup goes there around 9:30 in the morning and we are usually the only ones there for a few hours. So - it is great for the kids.
Luke came home Friday night and it wasn't too late so I let the kids stay up and wait for him. They were very excited to do that.
Luke was the chief caregiver all weekend since I was doing choir things all weekend except Saturday morning. By Saturday morning I was dying to get away from the kids so I went off shopping by myself.
Sunday Nathan was not feeling great. He caught a little cold and laid around most of the day. He had to miss church and a party we were going to go to. It was for cancer families and so we didn't want to run the risk of infecting anyone.
Today I kept him home from preschool because I felt he needed an additional day of rest. He was a little emotional because of his cold. He is much better this evening and so I think he will be fine tomorrow.
We baked our first round of Christmas cookies today. We made some gingerbread and the kids got to use the cookie cutters.
There is nothing eventful going on this week. I expect to hear something about scan schedules the week following Christmas. His next round of immunizations is set for January.
So - that's it. Are you getting bored with us? That's OK - we like it that way!
Monday, December 6, 2004
Monday, December 6, 2004 9:58 PM CST
******************************************************************************
Update Wednesday December 8, 2004
I got a message from Nathan's oncologist that the urine test came back all in normal ranges. This is the test that is elevated when there is neuroblastoma present. So - some good news!
******************************************************************************
Hello -
Glad you all like the tie. Nathan has been asking us for a tie ever since he saw a child wearing one at the Ronald McDonald House. He was so proud of that tie and he loves wearing it. He would wear it every day if we let him. For all you who have asked - we bought it at Mervyn's - it is Van Heusen and a clip on. The picture was from Sunday morning before we went to church.
We had a very busy but very good weekend. Luke came home late Friday night. Our good friends Max and Myndi and thier boys, Maxx and Miles spent the night Friday night before they flew to Florida where they are moving. We will miss them!
Saturday morning we did the shop with a cop. They had breakfast for everyone and then the kids waited their turn to sit on Santa's lap and get a present. Nathan and Julia had to wait a long time and were very patient. They were very pleased to see Santa and Julia gave him a hug when he put her on his lap. They then got to pick out $25 worth of toys (we were at KMart). Nathan picked out a motorized loader and Julia picked out 2 dolls and some art supplies. I left from there to go to choir rehearsal and they went home to play with their toys. Nathan got an RC moster truck from Santa and so he and some neighborhood kids had a blast driving it around outside later in the day. It was very nice out and Luke and I stood out there with them drinking coffee - it was a very satisfying family time.
Sunday we were off to church in the morning and then we did some Christmas shopping on the way home and ate at my new favorite fast food place - Culver's. I LOVE Steak and Shake and we don't have them here. Culver's is new here and it comes much closer than anything else we have. Yum.
We spent Sunday afternoon decorating the house and putting up the tree. After dinner we decorated the tree. It was so much fun to watch the kids put on ornaments. They both wanted to put the angel up and so we had to lift them both up there.
Luke left again early this morning and the kids and I ran more errands and then I had to go to choir practice tonight. They called some extra rehearsals. There are rehearsals Mon - Thurs night this week, Saturday afternoon and the concerts are on Sunday. Crazy! Anyway - I managed to find babysitters for all but Thursday - and I really didn't try for that because 3 nights in a row is probably going to be more than the kids can handle anyway. It is so much fun to be singing so much though.
Nathan got a haircut this morning. We are so perplexed by his hair. It is either long, somewhat fuller but shaggy and crazy or short, neater but balder-looking. I haven't decided which way I like it better yet. He seems fine with anything as long as it is not sticking up funny.
Well - I think I have covered most of what has been going on around here. I am not sure when my next update will be. Probably not for a week or so unless something comes up. I will try to put some tree decorating pictures on the photo page soon.
Thanks for checking in!
******************************************************************************
Update Wednesday December 8, 2004
I got a message from Nathan's oncologist that the urine test came back all in normal ranges. This is the test that is elevated when there is neuroblastoma present. So - some good news!
******************************************************************************
Hello -
Glad you all like the tie. Nathan has been asking us for a tie ever since he saw a child wearing one at the Ronald McDonald House. He was so proud of that tie and he loves wearing it. He would wear it every day if we let him. For all you who have asked - we bought it at Mervyn's - it is Van Heusen and a clip on. The picture was from Sunday morning before we went to church.
We had a very busy but very good weekend. Luke came home late Friday night. Our good friends Max and Myndi and thier boys, Maxx and Miles spent the night Friday night before they flew to Florida where they are moving. We will miss them!
Saturday morning we did the shop with a cop. They had breakfast for everyone and then the kids waited their turn to sit on Santa's lap and get a present. Nathan and Julia had to wait a long time and were very patient. They were very pleased to see Santa and Julia gave him a hug when he put her on his lap. They then got to pick out $25 worth of toys (we were at KMart). Nathan picked out a motorized loader and Julia picked out 2 dolls and some art supplies. I left from there to go to choir rehearsal and they went home to play with their toys. Nathan got an RC moster truck from Santa and so he and some neighborhood kids had a blast driving it around outside later in the day. It was very nice out and Luke and I stood out there with them drinking coffee - it was a very satisfying family time.
Sunday we were off to church in the morning and then we did some Christmas shopping on the way home and ate at my new favorite fast food place - Culver's. I LOVE Steak and Shake and we don't have them here. Culver's is new here and it comes much closer than anything else we have. Yum.
We spent Sunday afternoon decorating the house and putting up the tree. After dinner we decorated the tree. It was so much fun to watch the kids put on ornaments. They both wanted to put the angel up and so we had to lift them both up there.
Luke left again early this morning and the kids and I ran more errands and then I had to go to choir practice tonight. They called some extra rehearsals. There are rehearsals Mon - Thurs night this week, Saturday afternoon and the concerts are on Sunday. Crazy! Anyway - I managed to find babysitters for all but Thursday - and I really didn't try for that because 3 nights in a row is probably going to be more than the kids can handle anyway. It is so much fun to be singing so much though.
Nathan got a haircut this morning. We are so perplexed by his hair. It is either long, somewhat fuller but shaggy and crazy or short, neater but balder-looking. I haven't decided which way I like it better yet. He seems fine with anything as long as it is not sticking up funny.
Well - I think I have covered most of what has been going on around here. I am not sure when my next update will be. Probably not for a week or so unless something comes up. I will try to put some tree decorating pictures on the photo page soon.
Thanks for checking in!
Thursday, December 2, 2004
Thursday, December 2, 2004 5:16 PM CST
Nathan went to the oncologist today. We had to wait a really long time, but other than that it was a good appointment. They took his blood, but I didn't get any blood counts before we left. I am sure they are fine though. They also took his urine to do the usual test on that. We weren't really due for the test for a few weeks, but now it is out of the way. The only thing about it was that Nathan had some cookies last night with vanilla and vanilla can affect the results. If they are off we will just repeat when he has his other scans. We talked about those and agreed to do them the first or second week in January. We discussed how long we would scan at 3 months intervals. Per the antibody study he will do three month scans until Dec 2005. His doctor felt that for him we should continue every three months until summer 2006. He has a high risk of relapse right now and for the next year to year and a half. After that the risk will diminish somewhat.
It is a good oncology appointment when there is a long discussion about hair and not tumors. His doctor noticed that Nathan's hair is not normal. It has grown in very thin on top and the hair itself is very coarse. Luke refers to it as "down" (as in duck feathers) because it is impossible to get wet. All the other cancer kids I know have normal looking hair, but for some reason Nathan's hair has not grown back normally. It is hard to say why. The doctor had no explanation but was interested about it. He said he had another neuroblastoma patient years ago whose hair grew back in a pattern resembling male-pattern baldness. He sent the child to a dermatologist and no cause was found. Anyway - hair is not important. I do hope it continues to fill in. It would be better for Nathan if his hair does not look abnormal when he get to the age where kids will tease. The poor kid already has a mouth full of silver teeth and hearing aides.
We decided that Nathan will go to the clinic about every 6 weeks - basically once in between every scan cycle. We also discussed Nathan's physical strength because although he is so much better than he used to be - he is still far less energetic and physical than his peers. The doctor felt it would just take more time. I also wonder how much if it is mental. We go to preschool and other kids take off running down the hill to the classroom and he just plods along. I think that sometimes he just doesn't have a freeness of spirit because of all he has been through.
All these things being said, I am very thankful to be asking his doctor about these non life-threatening issues.
The three of us are still sick with bad colds. Julia and I are the worst with raspy voices and coughing. Nathan just has a runny nose.
Luke returns late tomorrow night. Unfortunately he has to travel again next week. I am searching for a babysitter who can watch the kids until 10:30 on a school night for a choir practice.
On Saturday, very early, we are going to "shop with a cop" where the kids will get to pick out presents for Luke and I at Kmart with the help of a police officer. I think we are also getting breakfast. I then have a 3 hour rehearsal for choir. We may try to decorate our tree Sunday afternoon.
We are finally going to meet with the make-a-wish people in a few weeks. We have been putting them off because of our busy schedule going back and forth to New York. Now comes the hard part - figuring out what Nathan wants. We asre open to anything - so it will be interresting to see what he comes up with. He deserves anything he can come up with!
So - nothing more medical until January 3, when he has his next oncology appointment just prior to his scans. That is a wonderful thing!
Until next time....
Nathan went to the oncologist today. We had to wait a really long time, but other than that it was a good appointment. They took his blood, but I didn't get any blood counts before we left. I am sure they are fine though. They also took his urine to do the usual test on that. We weren't really due for the test for a few weeks, but now it is out of the way. The only thing about it was that Nathan had some cookies last night with vanilla and vanilla can affect the results. If they are off we will just repeat when he has his other scans. We talked about those and agreed to do them the first or second week in January. We discussed how long we would scan at 3 months intervals. Per the antibody study he will do three month scans until Dec 2005. His doctor felt that for him we should continue every three months until summer 2006. He has a high risk of relapse right now and for the next year to year and a half. After that the risk will diminish somewhat.
It is a good oncology appointment when there is a long discussion about hair and not tumors. His doctor noticed that Nathan's hair is not normal. It has grown in very thin on top and the hair itself is very coarse. Luke refers to it as "down" (as in duck feathers) because it is impossible to get wet. All the other cancer kids I know have normal looking hair, but for some reason Nathan's hair has not grown back normally. It is hard to say why. The doctor had no explanation but was interested about it. He said he had another neuroblastoma patient years ago whose hair grew back in a pattern resembling male-pattern baldness. He sent the child to a dermatologist and no cause was found. Anyway - hair is not important. I do hope it continues to fill in. It would be better for Nathan if his hair does not look abnormal when he get to the age where kids will tease. The poor kid already has a mouth full of silver teeth and hearing aides.
We decided that Nathan will go to the clinic about every 6 weeks - basically once in between every scan cycle. We also discussed Nathan's physical strength because although he is so much better than he used to be - he is still far less energetic and physical than his peers. The doctor felt it would just take more time. I also wonder how much if it is mental. We go to preschool and other kids take off running down the hill to the classroom and he just plods along. I think that sometimes he just doesn't have a freeness of spirit because of all he has been through.
All these things being said, I am very thankful to be asking his doctor about these non life-threatening issues.
The three of us are still sick with bad colds. Julia and I are the worst with raspy voices and coughing. Nathan just has a runny nose.
Luke returns late tomorrow night. Unfortunately he has to travel again next week. I am searching for a babysitter who can watch the kids until 10:30 on a school night for a choir practice.
On Saturday, very early, we are going to "shop with a cop" where the kids will get to pick out presents for Luke and I at Kmart with the help of a police officer. I think we are also getting breakfast. I then have a 3 hour rehearsal for choir. We may try to decorate our tree Sunday afternoon.
We are finally going to meet with the make-a-wish people in a few weeks. We have been putting them off because of our busy schedule going back and forth to New York. Now comes the hard part - figuring out what Nathan wants. We asre open to anything - so it will be interresting to see what he comes up with. He deserves anything he can come up with!
So - nothing more medical until January 3, when he has his next oncology appointment just prior to his scans. That is a wonderful thing!
Until next time....
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