Monday, October 31, 2005

Monday, October 31, 2005 8:58 PM CST

*** Check out link above in orange for our October family pictures ***

Happy Halloween!

It has been a good - but busy day. Nathan went to the clinic right after school. His counts were all still good except his platelets had dropped quite a bit - but still at a number that it is OK to do chemo. It was a difficult decision whether or not to start chemo because if he platelets are dropping and he is starting chemo then they may go quite low again - but at the same time - if this is going to be his last round of chemo it is probably better just to go forward and if it takes a while for his counts to rise up it is OK. So - we decided to go ahead with it. He will go back Friday and have counts checked and I will get to talk everything over with his regular Oncologist who has been gone. We may decide not to give him Friday's dose of the Temodar if his counts are way low.

We didn't get home until almost 5:00 after the chemo so we hurried up and had dinner and went trick or treating. Nathan and Julia had a ton of fun. We actually had "good" weather for Colorado. I am not exaggerating at all when I say that all but 1 or 2 years we have been here it is either iced or snowed on Halloween - so to simply have a little cold weather but dry was so nice. Now - there was snow on the ground this morning - but it cleared up by tonight. After trick or treating we drove over to trick or treat at one of Nathan's preschool teacher's house. Nathan so loved having her last year and he misses her.

They are now tucked in bed and will be asleep quickly (I hope).

There is nothing really interesting to say about our weekend. We stayed home mostly and baked halloween sugar cookies and carved pumpkins. Julia wanted a happy pumpkin and Nathan wanted a scary one. Neither of them wanted to help scoop the pulp out. Julia kept referring to the seeds as "oats".

Both of them had halloween parties at school last week. They got to wear their costumes numerous times and are now happy to have them for dress up. See the photo page for more pictures.

So - Nathan will have chemo the rest of the week and go back on Friday. I suppose we will just be taking it easy in the afternoons while chemo is going. Tomorrow I have to go to the doctor in the afternoons so they will go to Tammy's. She gave Nathan chemo once last time so I am able to leave him. Thanks Tammy! Not everyone would be willing to take that on.

I hope you all had a happy halloween too and I look forward to seeing pictures of your kiddos too - my email address in on the page.

Thursday, October 27, 2005

Thursday, October 27, 2005 7:43 AM CDT

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Update - Thursday afternoon...

I was expecting this and I can't tell you why - I had been having thoughts that Natan's urine sample would somehow go wrong and we would have to repeat it. I don't normally think this but I really have been expecting it this time. So - I just got a call from the lab at the hospital that they messed up his sample and it is ruined. The woman was very apologetic and I could tell she had gotten a reaming from the clinic staff and also that they must have told her she would have to break the news to me.

Instead of being mad - I am just resigned to it - I just knew something would go wrong. I am not usually that type of person but I guess I had some kind of intuition this time. Anyway - we will not be redoing it any time soon. He is due for other scans soon anyway and so let them do those if they really want to know his status. I have recently been swinging back to wanting him to have some scans again to see where his disease stands. So - I will talk to his regular onc when he gets back and we'll see what he wants to do.

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Nathan had his weekly appointment yesterday. His counts are great - very similar to the week before. So - this leaves us wondering what they are doing. Have they gone done and back up? Are they still going to go down? Will they remain unffected this time? He is due to start chemo on Monday. He will go get his counts checked. If there are signs they are going down then he will not start it. If they are still good he will start another round. It is kind of nerve-wracking to think of starting another round without knowing what his counts have done - but it doesn't make sense to delay the chemo waiting to see if his counts will stil go down. If they are still going to go down it is most likely we will see that by Monday; which is 3 weeks from the start of the last round. I have no idea where the time has gone since that seems like it was just last week or something.

He gave a urine sample for the test that detects neuroblastoma. We were so glad to get that over with. It caused Nathan some emotional distress this week. His foods were so restricted that we had trouble feeding him. In the past it has been no big deal and he hasn't really realized it. Now that he is in school we had to tell him about it to try to keep him from eating other food in school. We also had to try to find a snack without vitamin C, vanilla, banana and chocolate to send with him to school. He likes to bring fruit so that was hard. So, basically since he knew of the restrictions this time - he let himself get all upset about it. It was quite a pain. I pinned a note to him on Monday for his teacher. Apparenty she sent them to library and they had M & Ms for a lesson on patterns. His teacher walked in right when the library teacher told them to go ahead and eat them. Nathan had only had one - but it was upsetting to him and his teacher was a little frantic I think. So - like I said before - we are SO happy to have that over with for the next 3 months or so. We should have results sometime next week.

Julia has her school halloween party today and Nathan has his tomorrow. Julia is a unicorn and Nathan is a fireman. They have had a few opportunities already to do some things in their costumes and they are very cute. I will post pictures from Halloween next week.

I had my appointment - all is well with the me and the baby. I will go back next week. I got the paperwork about going to labor and delivery and am free to have this baby whenever he or she wants to come. I am hoping for the week before Thanksgiving. Julia and Nathan were both about a week early so I would really like the same to happen this time. I have had two very vivid baby dreams this week and the baby was a girl both times...so maybe a girl? We'll see....

Thursday, October 20, 2005

Thursday, October 20, 2005 5:00 PM CDT

Sorry for the delay in updates - we have been pretty busy the last few days.

Nathan went to the clinic yesterday (Wednesday) afternoon and his counts are really good. The chemo definately hasn't affected them yet and they have definately been recovering. It was a relief to see them all at almost normal ranges. His doctor commented that THIS time we wil for sure wait the full two weeks at least before we start chemo - I think he is pretty convinced he made a mistake starting Nathan on round 2 early and that his counts just don't drop right way with this chemo.

His sed rate was back to normal. This is the last test to fall back to normal that shows inflammation. It had been still too high three weeks ago. So - whatever it was that was affecting his thigh did seem to heal. We'll never know what that was about. We could do without these mysterious things.

Next week they will send off his urine to look for neuroblastoma markers. Monday and Tuesday we will have to carefully monitor everything he eats. It is so hard to remember all the restrictions (vanilla, banana, vitamin c, and there's more - I always have to look it up) but until you do this you don't realize how many food items have these things in them! His doctor will be gone for a conference next week. He is going to try to catch Nathan's oncologist in NY (who should also be there) and see if he can learn anything more about the vaccine trial.

As far as non-medical - things have been pretty good. Monday we took it easy and just hung around the house. I think Julia was bored - but I knew the rest of the week would be more busy and so I didn't want to go out. Tuesday, Nathan, Julia and I went for a playdate at a classmate's house. I managed to keep Julia somewhat occupied so that the boys could get some time playing without her. Next time he will go alone. He also had a playdate this afternoon at a different classmate's house and I just dropped him off. Julia was VERY upset. She has been having a hard time again lately and her brother going off to play without her was about the worst thing she could imagine. The flip side is she and Nathan have been fighting so much that I knew she would actually be happy to have some time just with me. She and I colored and painted the whole time. Julia seems to be having some emotional problems again and we are at a loss at how to help her. She is purposefully nasty or does things just to make others mad. When she does it to Nathan he walks away and tells her he won't play with her anymore - a which point she gets hysterical crying "I want my brother!" It is as though she is determined to be miserable and make others around her miserable and get negative attention. Anyway - things are only going to change soon - so I guess we'll see how it goes...

As far as I go - well - I guess I am just 8 months pregnant and all that goes along with that. I am just in that large uncomfortable stage (even if I don't look huge -my body thinks I am!). I played tug of war with my wedding rings in the middle of the night the other night and they are now off for a while. With Nathan they came off way early and with Julia I never had to remove them at all. It is all temporary and only a few weeks left. I go back to the doctor on Tuesday and will be going weekly from then on.

Lastly - but not leastly - there is Luke - but since he is neither myself nor my child I do not feel it my place to try to describe what he is up to - other than work as usual. He did take a day trip to Utah on Monday, but that should be the last of his traveling for a long while. Maybe he will chime in sometime - with me doing most of the medical stuff this website has turned into something that seems to be my domain - but perhaps he will chime in sometime if he has the desire.

Thanks for checking in on us...we appreciate it.

in playroom next to clinic

Sunday, October 16, 2005

Sunday, October 16, 2005 8:21 PM CDT

Hello - Hope you all had a good week and weekend. Nathan handled the chemo very well and all he showed was a little extra crankiness and tiredness. With snow and parent-teacher conferences last week Nathan only went to school one day. Unfortunately I didn't even get to talk to his teacher because she was home having contractions..she'll be back in January. I did get to talk with the sub so that was good.

Friday I took them swimming. They had been wanting to swim for so long and they had a blast! In order to do this I had to remove his port needle and put in a new one on Friday. I had done it one time at the clinic with the nurse watching. I am happy to report it went very well and Nathan approved.

Saturday we met up with some friends at a pumpkin patch. They were picked through at that point but they had carted in some pumpkins. We also picked a few apples. They drive you out to the field on a trailer hooked up to a tractor and so the kids thought that was a lot of fun. It was a very nice time. Unfortunately for me I started having some contractions after all that activity so I spent the rest of the day lying around. They stopped at that point so I guess I need to take it a little easier from here on out....easier said than done.... Anyway - check out the photo page for some pics.

Today Nathan's choir and the first grade choir were singing at church. They sang all three services and Nathan thoroughly enjoyed himself. He did a great job and I can't begin to tell you how wonderful it was to see him up there singing. I was in the choir loft for the first two services and couldn't really see him but Julia and I popped int the balcony to see him for the third service. Luke helped out with the kindergarteners for all 3 services. They hadn't really lined up any parents after the first one and he saw they needed help. He is SO GOOD with kids - and enjoys it. I am not sure I could have done it!

Nathan will not go to the clinic until Wednesday. It has been nice to have more than a week off from it.

Getting back to singing...they are in bed right now - but undoubtably Julia is up in his bunk and they are both singing...it is so sweet to hear. We have found that they play up there every night when they go to bed and then Nathan tells Julia when it is time for her to get down. They put away any toys they have in the throw up bin in his bed and go to sleep.

So - I will update again on Wednesday. He will just be getting counts done and we wouldn't expect them to be down too much yet - but who knows after the last round....

ps - the new pictures is his school picture

Monday, October 10, 2005

Monday, October 10, 2005 6:39 PM CDT

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Update Tuesday, October 11, 2005

I just wanted to update that my appointment went fine. Everything is exactly where is should be as far as size, weight gain and the baby's position.

Nathan is doing well with the chemo so far. We woke up to him screaming this morning. We thought he had gotten sick but he was upset at Julia for having left their room before him. Luke layed down with him and Nathan had lots of questions and comments about chemo and his doctors. He seems to be working through some emotions about starting chemo again. I am sure he is wondering how much more he will have and what will happen next but we don't have an answer for him. I have told him that we are waiting to hear when we are going back to New York - but I think that is unsettling that we don't have a plan and that he does not know what is coming next for him. Unfortunately there is not much we can do for him. After he and Luke talked for awhile Nathan perked up and said he was going downstairs to get his milk. So I think he felt better getting some of his thoughts off his chest.
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Chemo has finally started. Nathan counts were up just enough to begin chemo. This time he is getting 80mg of the drug that supresses counts. The first time he got 100mg and the second he got 120mg, thinking that the 100mg could have been too low. Hopefully this 80mg dose will not keep him down for more than a couple of weeks - instead of 6!

Nathan's weight was up again and he is really looking robust (just pale!).

I thought I'd share a picture of the fun thing the kids got to do today....

The funny thing was that when we got downtown (8 miles away) to the clinic there was no snow there at all. We always get a kick out of the weather in Colorado. This was fairly late for our first snow and it was quite a big one.

Nathan's school was on a delayed start - he could have gone in for 1 hour of school but I kept him home. He and Julia were having such a good time playing this morning and I decided to let them play and avoid being out in the weather.

Nathan will have chemo at home the rest of the week in te afternoons and go back to the clinic next Wednesday.

There are teacher conferences on Thursday and Friday so no school for either child. On Thursday they will go to the sitters for the day. This is mainly because Tammy's daughter is out of school too and they all have such fun playing and Nathan gets to go too - which dosen't happen very often anymore. Not that I mind the free day....there won't be too many more of those before the baby. The last time Nathan realized I would have free time he was worried I would be lonely without him and Julia. I tried to gently explain that I enjoy my free time! I do have a conference with his teacher Thursday afternoon. I also have a doctor's appointment for myself tomorrow morning. It is just a routine check - every 2 weeks now. I may need to send them to Tammy's tomorrow since I suspect schools will be delayed tomorrow too so I won't have the time with them at school and I am not sure I would want to bring them with me to the doctor.

So - I am keeping my fingers crossed that Nathan tolerates chemo as well as the prior rounds. I'll update later in the week.

There are new pictures for September on our family page - see link above or below.

at the clinic - in exam room

at the clinic - in exam room

Tuesday, October 4, 2005

Tuesday, October 4, 2005 4:16 PM CDT

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Update: Thursday October 6, 2006

I just wanted to let you know that the kids had a good visit at the dentist. I was surprised to see that when Nathan opened his mouth he had some of his 6 year molars back there behind all his shiny silver teeth! We got some good news also. They did a panoramic xray of his mouth and ALL of his permanent teeth are there! The chemo can affect formation of these teeth. His 12 year molars are just buds at this time - but they are there and growing and might at worst be a little smaller than usual. I will give the dentist credit - no comments to me about the kids brushing habits...I guess their teeth looked OK. I just have an issue with him since he pretty much rebuts that all of Nathan's decay came from chemo - when it is clearly a documented late effect of chemo and we know lots of other NB kids with the same problem.

So anyway - a good visit.


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Nathan had his counts checked yesterday. All his counts are better except his white blood count and ANC. He is still slightly neutropenic. When I say better - I mean up - no where near normal. It is looking likely that they will be high enough to start chemo on Monday so that is our curent plan. The first round Nathan had 100 mg of Temador. The second he had 120 since he seemed to tolerate the 100 so well. This time he will only have 80. His oncologist says it is much more iportant to keep on schedule with the chemo that do full-strength. By the time we start round 3 on Monday (IF counts are indeed good enough) it will have been long enough to have done 2 rounds. I was relieved to heere the doese would be smaller. I was getting worried about what it would do to Nathan this time. Each round will have a bigger effect on his counts.

We discussed scans again. There was no word from NY about what they wanted. We basically decided that there is not much of a need to do them right now since he has had different tests since relapse that have showed good numbers. So - we are just playing it by ear and will keep revisiting whether there is a need for scans and which ones. This is fine with me. For a while I was obsessed with wanting to know his cancer status. Is he NED again? Well - I realize that right now there is no reason we need to know that. He seems to be holding his own and we know that any other chemo is out of the question for him. In some ways I would rather not know that he has a little spot of something somewhere when there is nothing different we can be doing right now anyway. When it is time to scan...then we will know. It makes it hard to answer the question that every asks.."how is Nathan?" When I am asked that the quick answer is that he is doing well - because for our everyday life purposes he is. I suppose this does not give people the full picture. I imagine there are people who think he is well means his cancer is gone and he will go on to live a long life. That is highly unlikely - but of course that is what we hope for. He is doing well - but he is still battling cancer. In his day to day life - he is doing everything any other 5 year old could want to be doing and he feels well despite his very lazy bone marrow.

Nathan and Julia learned about Noah at Sunday school this week. Nathan asked Luke what causes flooding and Luke told him that lots of rain can cause flooding. Nathan said that hurricanes cause floods too. When Luke agreed, NAthan said "but God promised he would never flood the world again!" Luke assured him that meant the whole world and that the hurricane flooded some areas but not the whole thing. So Nathan responded "so he is just flooding it city by city?" We had a good chuckle out of that.

I had a good birthday. Last year the kids wanted to get me balloons and so Luke took them to the party store and they picked out presents for me there too. So - this year they thought they shoudl do the same. Luke took them and they each got me a balloon and present. Julia got me a Happy Birthday balloon and a princess bouncy ball. Nathan got be a sticky football and a heart shaped balloon with roses on it that said I Love You. His balloon choice really is an example of his personality. He is so sweet and such a little man. He thought that telling me "I Love You" on my brithday would be a really good thing to do. Luke got me an Ipod! We don't usually do much for each other on our birthdays but he said I deserved it. I am already getting very good use out of it. I forget how much listening to music lifts my spirits and with kids in the house with me I rarely get to listen to anything I want to hear.

The other parts of our week and weekend were fairly normal. I can't really think of anything that stands out. Nathan would probably say he didn't do anything fun. That is his new thing now is saying he is not having fun and looking to me to provide some. This complaint can come after a full day of doing all kinds of fun things - it doesn't matter.

So - we are clinic free the rest of the week. I am taking the kids to the dentist tomorrow afternoon. I sort of dread that because their dentist seems kind fo judgmental to me so I am sure I will be told they are not brushing well or often enough. Oh well... I see my own dentist on Thursday - she I like though.

So - that's about it! Thanks for checking in.