Nathan's Journey

2008-12-23T08:05:00.000-08:00

To access Nathan's story in chronological order please see the archives by date on the right. You can clink on "newer post" at the bottom of each post to go to the following date.

Wednesday, November 30, 2005

2005-11-30T11:41:00.000-08:00

Wednesday, November 30, 2005 10:21 PM CST

Just a quick update on Nathan's counts. He went in on Monday to check them. They are all slightly better except for his platelets. He did have a nosebleed last weekend and so we are going back in on Friday to have them checked again to make sure he doesn't need a transfusion. He is feeling pretty good despite his counts.

Scans are coming up already next week. I can't begin to explain how worried I am about them. If he has any new disease he will be in a very bad position. It really stinks to be having scans right before Christmas and right after Lauren has arrived. It will be very difficult to handle a bad outcome right now.

Please send all your thoughts and prayers our way....

I will update this weekend about Friday's counts.

Saturday, November 26, 2005

2005-11-26T11:39:00.000-08:00

Saturday, November 26, 2005 8:40 AM CST

Hello! I hope you all had a wonderful Thanksgiving.

I meant to update many days ago. I find the only time I am using the computer is when I am nursing Lauren and have only one hand so I can't type.

We had a very nice Thanksgiving. My parents arrived last Monday and are still here. My brother and his family drove down for the day and we had the usual Turkey fare.

Nathan is doing well. He went to the clinic last Monday and we found his counts to be at their usual position after this chemo. His platelets are low but not at transfusion level and his ANC is 700 - which is a low immunity but not so low he can't go places. His hemoglobin is actually pretty good and he is no where near transfusion level. The medication we have Nathan on seems to have healed his bowel problem and he is doing a great job taking it - especially being woken in the middle of the night to take it. He goes in for counts again on Monday.

We got an email from Nathan's NY oncologist wanting to know his status. January is the latest word on the vaccine trial opening. We are hopeful that this time frame will actually come to be. Of course - we need to get through his upcoming scans first. We need those scans to not show any disease or at the worst very minimal disease. It is frightening this time because we have NO CLUE what these scans may show. There could be anything going on inside Nathan right now and we will just have to see what they show.

Nathan has good energy these days. He has been practicing riding his bike and has made big strides. He has fallen several times and is not getting upset about it and getting right on. Don't get me wrong - he still has training wheels. His gross motor skills are something that he lags in. It occurred to Luke and I after one of these sessions that bike riding with low platelets is not the best thing medically - but best for Nathan so we are not going to worry about it.

Lauren is doing great! She has been a little jaundiced but getting less yellow. She had gained almost all of her birthweight back by day 6 and so her doctor was very pleased. She is sleeping in good chunks at night so I am getting up with her twice - which is not bad for 10 days old. She is such a doll! I am enjoying having a newborn so much. Nathan and Julia are still very happy to have her and are always checking on her and wanting to hold her.

So - all is good around here...

Thanks for checking in.

Sunday, November 19, 2005

2005-11-19T11:31:00.000-08:00

UPDATE SUNDAY NOVEMBER 20, 2005

I realize I left you hanging about Nathan - sorry!

He has beeen having some bowel troubles. We think he has C Diff from the antibiotics he was on and from being immuno-suppressed. It causes him abdominal pain, diarrhea and gas. He has only had a few episodes of pain, luckily. We put him on a medication that he has to take every 6 hours for 10 days. At least we are already awake in the middle of the night to get up and give it to him. You may recall he had 6 months of bowel troubles in the past that were really debilitating. He never tested positive for C Diff but it wasn't until we put him on the medication that he got better. So - that is why we are treating him even though we don't know for sure.

Nathan will have counts checked tomorrow - I will update more then.

Thursday, November 17, 2005

2005-11-17T11:28:00.000-08:00

It's a girl!

Luke here. Yesterday evening at 5:13 MT we welcomed Lauren Elizabeth Gentry into our family. Susan and Lauren are doing great! We may all be able to be home tonight, but hadn't worked all of the details through with the pediatrician and Susan's doctor. Keep your fingers crossed that all five of us will be here at home tonight.

I stayed with Susan and Lauren and the kids stayed with their sitter (Thank you so much, Tammy. You are always there for us). I'll be getting the kids shortly so that they can meet their new sister.

Pictures and details will come soon.

Lauren weighed 6lbs 15ozs at birth and was measured at 19.5 inches. These are almost exactly Nathan's stats when he was born.

I'm so excited and happy to get the kids and have all five of us together for the first time.

Monday, November 14, 2005

2005-11-14T11:26:00.000-08:00

Monday, November 14, 2005 6:38 PM CST

Nathan had a clinic visit today. His counts were somewhat better than I expected. He had been pretty emotional, tired and his nose was seeping a little blood-tinged mucous. His counts were all down but his white counts are still in a good range with an ANC of 1800. His platelets are low but not in transfusion range. I was a little concerned about that so it was a relief that he does not need one. His weight has gone back up a pound. We were all pleased about that!

Like I said, he has been pretty tired and emotional. It is something we do see with declining counts. He did go to school today and had a really good day - so I think when he came home he kind of let down. He had a major crying fit about not wanting anything to eat that we had available to him.

The next clinic visit is set for Monday - but we are to keep an eye on him and bring him in for counts later this week if it seems like they may be getting too low. By now we know some of the signs.

So - that is it for now. I am hoping to have this baby in the next week - so send some labor vibes my way!

Susan

Saturday, November 12, 2005

2005-11-12T11:18:00.000-08:00

Saturday, November 12, 2005 11:20 AM CST

I forgot to update yesterday...

Nathan is doing so much better. He went back to school on Thursday. He went to have his hearing tested and see the ENT. His hearing is stable but the ENT looked in his nose and said he has sinusitis. He reccomended antibiotics but wanted to defer to Nathan's oncologist. Since we were only a few minutes away we dropped by the clinic and decided to put him on antibiotics mostly because his body probably can use all the help it can get because of the weight loss.

The latest word from NY is that the trial is still awaiting final approval. So - we are not sure what the next step will be for Nathan. He has scans Dec 6,7 and 8. I am already getting anxious about them. I dreampt about them last night. It would have been a little better to do them a week sooner - but we really needed to make sure the baby is here before they get done.

Nathan was definately happy to go back to school. He was getting tired of hanging around the house. They had friends to play with yesterday too - which is always good. We have a "project" group on Friday afternoons. There are four of us moms and we rotate whose house we go to each week. This time it was my house and we cleaned while the kids played. It is so nice to start the weekend with a clean house.

My doctors appointment was fine. I have dilated some more and lost a pound - so those are good signs that the baby is thinking of being born soon. I am really hoping for next week sometime but I am not holding my breath.

Nathan goes back to the clinic on Monday. We have a quiet weekend planned at home this weekend. I will update sometime after Monday.

Tuesday, November 8, 2005

2005-11-08T11:15:00.000-08:00

Tuesday, November 8, 2005 4:32 PM CST

Well - Nathan has been under the weather. He was OK over the weekend until he threw up Sunday night. He had been having alot of loose stools which is normal for him - especially post-chemo. The vomitting also has occurred post-chemo too. Monday morning he woke up and was extremely emotional and coughing. I kept him home and he was pretty lethargic all day. Starting last night he began having frequent diarrhea and threw-up again. I went ahead and took him in to the clinic today instead of tomorrow. The doctor highly suspects he as a virus that is going around - and that it is not chemo related. His counts were all a little lower but his immunity is still in a good range. His platelets are dropping which we expected. They are still OK at 53,000. That is low but not tranfusion level. He has lost 2 pounds in about a week. I took one look at him this morning and could tell. He has been eating pretty well, but the amount of stuff moving through him is too high. With his very frequent diarrea today we are only able to give him certain foods which isn't helping matters. I am trying to get him to drink alot. He wasn't too dehydrated but he will get that way fast if he won't drink. As I write this he is complaining to me about being tired of drinking. I keep telling him he will have to go spend a few hours in the clinic getting fluid if he doesn't. We could have done that today but I thought I would see how he does at home.

I imagine he will stay home tomorrow again then I am hoping he is well enough to go to school by Thursday. He has an appointment with the audiologist and ear doctor on Thursday. He goes back to the clinic on Monday. We didn't see his regular doc today so we don't know if there is any new information on the vaccine trial. I left him a note asking him to call me this week if he does hear anything.

No baby yet for me...I am hoping for sometime after next Monday. I go back to the doctor this Thursday for my 38 week appointment and I am hoping that when they check me I have dilated some. I had quite a few contractions on Sunday so perhaps things are moving in the right direction.

I will update again at the end of the week.

Friday, November 4, 2005

2005-11-04T10:41:00.000-08:00

Friday, November 4, 2005 7:12 PM CST

TGIF!

Nathan went to the clinic today. Luke met us there since it has been ages since he has been. Nathan's counts were good EXCEPT platelets. We just have to hope they do not go so low he will need a transfusion. With him starting chemo with them on their way down there is no telling what they will do.

We got to hash some things out with Nathan's doctor. He had not gotten to talk to Nathan's NY doctor but had just received an email from him asking how Nathan is doing and what his status is. So - he will respond and we will see what the status of the Vaccine trial is. We decided that Nathan needs to be scanned so we can start to compile a list of treatment options for him. We will wait until the first week of December so we are not scanning as we wait for the baby to come. It is going to be difficult to figure out what to do next. Nathan's doctor commented that everyone feels better when there is treatment going on - but at the same time you have to be selective about it and there has to be an end point. So - I guess we will see about the trial and see what scans show and go from there.

Nathan had chemo in the clinic today and we decided not to give him his last dose of oral chemo tonight based on his platelet counts. Luke stayed with Nathan at the clinic. Nathan definately enjoyed having his Daddy with him!

The only other thing going on with Nathan is a cold - but he is handling that fine and still has plenty of white blood cells to fight it.

I also went to the doctor today. I had gone on Tuesday afternoon and was feeling cruddy. I was flushed, dizzy and my blood pressure was quite high for me. So - they took some blood and told me to take it easy and to come back today. The next day I came down with a nasty cold which explained why I was feeling so bad. Today my blood pressure was much better and my bloodwork was fine. I haven't been able to sleep much and my cold is making this end of pregnancy harder - but all is well pregnancy-wise so that is good! I am due in 20 days.

Nathan goes back to the clinic on Wednesday to check counts and to the ear doctor on Thursday. I go back to the doctor on Thursday as well.

We have no big plans for the weekend - which is good since Luke and I are both exhausted.

That's about it I think....I will update again on Wednesday or sooner if anything changes.

at the clinic - infusion area

Monday, October 31, 2005

2005-10-31T10:40:00.000-08:00

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

2005-10-27T10:38:00.000-07:00

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

2005-10-20T10:37:00.000-07:00

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

2005-10-16T10:35:00.000-07:00

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

2005-10-10T10:33:00.000-07:00

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.

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

at the clinic - in exam room

Tuesday, October 4, 2005

2005-10-04T12:00:00.000-07:00

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.

Monday, September 26, 2005

2005-09-28T09:04:00.000-07:00

Monday, September 26, 2005 6:38 PM CDT

Another Update: Wednesday September 28

Happy Birthday, Susan!

Today we are celebrating Susan's birthday. I don't have to tell you all how amazing Susan is. You know from reading her words here on Nathan's site. Susan is the most amazing mother, wife, and friend that I could ever imagine.

This is the second "top post" of the day. Please make sure and read Susan's short note on her and Julia's doctor appointments right below this.

************************************************
Update: Wednesday September 28

Just wanted to say that Julia's heart is perfectly normal! She'll go back in a year and then 5 years. My appointment was fine. I did gain some weight and a centimeter. The baby sounded fine.

************************************************
Another week - counts still about the same.....

The good thing is that his hemoglobin was up a little. Usually it is up on a Thursday (after medication to boost it on Monday) and then down on Monday when he receives medication again - so it was good it was up a little on a Monday. His ANC is again 800 - so slightly neutropenic but is doctor doesn't think it will drop more...we are not checking counts again until next Monday - so I hope he is right. His doctor is not worried that his bone marrow is shutting down - he feels it is just very sluggish and is coming up VERY slowly.

Nathan got a flu shot. He was unhappy at the prospect but as usual handled it like a pro. There is a chance the shot won't even work since his immune system is supressed and may not actually make the antibodies against the flu - but his doctor felt it was worth trying.

We talked about scans and we will probably do the full set in a few weeks. Luke and I have gone back and forth about doing them in NY or not. We feel that they have more expertise. However - we think we will likely do them there in a few months anyway and so I think we will do them here. If (when?) we have the expected ambiguous results the onyl answer would be to rescan to see if anything changes anyway and we can do that in New York. His local doctor will confer with the NY doctor about what scans are needed for the trial and we will make the final decision about when to do them. At this point it has been 3 months since MIBG, 2 months since bone marrows and a few weeks since CT scan. We will go ahead and do them all (and the urine test) to get back on track. Let's see - what else...Oh - his weight is back up! He is back to 40 pounds and so we are feeling good about that.

We had a good weekend. I went to the spa - thanks again to whomever sent me the gift certificate. It was wonderful! Luke and I also went out to dinner. We worked on boy names but didn't make too much progress. We did settle on a girl name (Jude H....we have a policy of not sharing our baby names until the baby comes out..sorry!). It was nice having a leisurely dinner together.

I go to the doctor tomorrow and am just hoping to hear that I have grown a little since last time. I didn't have any growth between my last two appointments. I am not too worried - but a little bit. It doesn't help that people left and right are telling me how small I am for being as far along as I am. At least the last person who made a comment said I was carrying well - I much prefer that! I have been starting to buy the needed baby things...8 weeks left! I can't believe it!

Julia also goes to the doctor tomorrow. She has a follow-up echocardiogram. They are just checking another time to see if she has any heart damage from the Kawasaki's disease. It is highly unlikely at this point. After this one I think she won't be checked again for a year or two. She is happy about getting to go to the doctor and Nathan needing the babysitting! Though she did ask if she could stay and play after she was done. She gets along SO well with Tammy's daugher.

So - that's it for now...it will be nice having only one clinic trip this week.

Friday, September 23, 2005

2005-09-23T08:39:00.000-07:00

Friday, September 23, 2005 7:55 AM CDT

Well - counts are still kind of crummy. His white count was up as a result of the medication. I don't think I mentioned it is in shot form - Nathan is so good about it. His white count is only up a little however... His hemoglobin is about the same and his platelets are lower. I am beginning to really worry about his bone marrow. He does have some stem cells stored but we really need to save those for future treatment. After surgery we had thought about trying to colect more stem cells but it is pretty clear that he has none to give us - so I am glad we didn't go to all the trouble trying to get some. He will me on the medication (neupogen) through today and then we wills top on the weekend and see what his counts are on Monday. Monday will be a day shy of 4 weeks since chemo.

They repeated the tests on his blood that show inflammation. One didn't get done I guess - but the other was down quite a bit from last Monday. So - whatever was going on in his body (probably this leg thing?) seems to have resolved itself. Monday I will discuss with his doctor the timing of his next MIBG scan and Luke and I will need to decide if we are doing it here on in NY.

Nathan fell asleep on the way to his appointment. This is very rare for him. He was very unhappy when he woke up and had to walk into the clinic. He threw a fit remarkably like one of his post-narcotic psychoses. Fortunately he did walk even though he screamed and complained the whole time. If he had refused I guess I would have had to have someone bring a wheelchair down from the clinic. It is odd for me to be at a point where I can no longer carry my child! If I weren't pregnant I suppose I might have been able to do it. As it is every step I take hurts these days.

As far as non-medical - things are going well. Nathan told me the other morning how much he like to go to school and that his favorite part of school is learning new letters. He seems to have lots of friends in school. One little boy has been begging his mom to have Nathan over - so on Wednesday after school she asked if Nathan would like to come over sometime. I told her our schedule is difficult to predict sometimes and then I said he might have chemo next week. She asked me to repeat myself and I said chemo and then said something about that Nathan is the one with no hair. I just assumed she knew! Yesterday when I saw her again we had our phone numbers to exchange and I told her I hope I didn't freak her out and she said no, of course, and said her son had told her Nathan had no hair but she thought he just meant Nathan had a buzz cut or something! Anyway - hopefully he will have a playdate next week. As for hair - I think the light chemos he has had have kept it from regrowing. There is some whitish baby fuzz - but no real hair.

So - we are still playing the waiting game...waiting for counts, chemo and vaccine...but Nathan is feeling good so that is what matters right now.

Tuesday, September 20, 2005

2005-09-20T08:35:00.000-07:00

Tuesday, September 20, 2005 8:16 AM CDT

I have to start this entry today celebtrating the beginning of our wonderful family - on this day eight years ago Luke and I got married in a little white chapel in Annadale Virginia.

Now to the medical...
Nathan's bone scan came back clear. He also seems to have stopped having pain in the leg for now. His counts are still tanking. His platelets were up a little but his ANC was only 700 which is getting close to the level we need to keep him home. His hemoglobin was also lower but not in transfusion range. We opted to give him so neupogen to up his white count even though it may stall out his platelets. I don't want him missing school when he feels so good. His doctor is now wondering if when we started round 2 of the chemo and his counts were so great perhaps they still were going to drop and so we really hurt them by starting chemo again so soon. Whatever the reason he will not have chemo this week. We heard from NY that the vaccine trial is at least 6 weeks from opening and so the chemo will continue for now. I am hoping we can actually start the trial after the baby comes if not after the holidays. I will have to find out how time critical it all is. So - Nathan goes back to check counts on Thursday.

We had a very nice weekend. We had a pass we got from Give Kids the World that allowed us to go to other parks at no cost for a year and so we used it to go the the Royal Gorge (about an hour and a half away). First we stopped at a park that let us ride a ittle train to view the gorge and bridge and then we went to the gorge and rode the carolsel, the incline down to the bottom of the gorge and walked out onto the bridge. It is the world's tallest suspension bridge.

I must run off to get Nathan on the bus - I will update again on Thursday.

Friday, September 16, 2005

2005-09-16T08:34:00.000-07:00

Friday, September 16, 2005 9:37 AM CDT

Hmm - I gues I forgot to update yesterday - sorry!

Nathan's counts are still low. His platelets and hemoglobin were only very slightly up and his ANC (immunity) was a little lower but still OK at 1100. So - we will definately not have chemo on Monday. There is still no word from the doctor in NY so we are still in the dark about things. Since his counts haven't come up it doesn't hurt anything that we haven't heard - but it is frustrating to not know what the next step may be.

I took Nathan in for his bone scan injection this morning and we will go back in a little while for the scan. There will be a screen where I can see what is on it - but I am not that familiar with a bone scan so I don't think I will try to interpret it. Hopefully the results will be available on Monday when Nathan goes back to the doctor.

Nathan's weight was up about a pound - so I am pleased about that. He definately looks a little bit better in that department.

On Wednesday evening we all went to the church. They have dinner and programs and we had asked the kids if they were interrested in kid's choir and they were. I went to my choir rehearsal and Luke went to a class. Both kids seemed to have a really good time. Unfortunately it keeps them up quite late since my rehearsal isn't over until 8:30 but they keep the kids and let them play. They went straight to bed and so it seems to have worked out fine.

My doctor's appointment went fine. I didn't appear to grow any since the last appointment - but am still in the normal range - plus those measurements are anything but exact. If I still show now change next week then they will look into it. The baby is quite active and is head down so everything seems good there. 10 weeks or so to go. Luke and I need to come up with some names for this child!

So - I think that catches us up. Check out the view photos link for more new pictures.

Monday, September 12, 2005

2005-09-12T08:26:00.000-07:00

Monday, September 12, 2005 6:01 PM CDT

Here we are after a busy weekend. I will get to that in a moment.

I have to share the medical news first. I have been extremely stressed about Nathan's status. We did get some good news today that Nathan's urine levels are normal as is his LDH. His urine levels were elevated at relapse so it is good to see them back to normal. We didn't have his LDH at relapse but it can be an indicator of cancer activity in the body. His Sed rate and CRP are both high. Once again - these are the tests for inflammation in the body. They can be high for all kinds of reasons. For example they were high when he was diagnosed and they were also high when he had the fluid on his hip. So - between the recent surgery, leg pain, and recent viral respiratory illness who knows what that represents. We will redo it next week. The bone scan will really be the next indicator of what may be going on. I was putting lotion on his legs last night and rubbing it on the "spot" on his thigh hurt him. His oncologist said it really seems like a soft tissue problem (muscle or fat). So - we'll see what the bone scan says and go on from there.

His counts are actually lower. His doctor thinks that his platelets rising last week may have been an inaccurate test. They are at 23,000 (transfuse at 20,000) but are likely on their way up (they can tell that his platelets are bigger cells which mean newer...something like that - from some graph the machine prints). His hemoglobin was down but at 8.2 still not at transfusion level and will hopefully remain high enough not to transfuse. His ANC was 1200. Anything below 1000 is neutropenic but it is really below 500 where he should be kept out of public places so 1200 is just fine. This is without having any neupogen - which is the drug he usually gets to bring his white counts up - so that is fine.

We will recheck counts on Thursday and try to figure out where we will go from there. If they are still low, we will see about chemo next week. If he takes to long to recover they will lower his dose of chemo back to where it was the first round. We are kind of assuming at this point that he will have another round of chemo. His oncologist will email the NY oncologist to see what the status is on the vaccine trial and get his input on more chemo. I asked him if there were no trial what he would recommend for Nathan and he thought 4 rounds of this chemo (total) so two more rounds. Since we haven't heard anything from NY I think it is very likely he will start chemo next week again so long as his counts are high enough. I hope we at least get a little bit of info from NY.

We didn't get Nathan's weight today, but I think he is holding steady. I will make sure to get it on Thursday. I think that covers all things medical for today....

Back to our weekend...Friday night Luke and I went to the choir banquet and the kids were very happy to be babysat. They just love babysitters and especially love the sitter they had - Brenna. They love to play with her. Unfortunately I had bad indigestion all night which made it a little hard to enjoy it all. It is just one of those pregnancy things that crop up every once in a while and I wish it could have happened a different night.

Saturday we took it easy during the day with me running a few errands by myself and then a family trip to the "cookie coffee shop" AKA Panera for an afternoon snack. That is one of the kids' favorite outings. Saturday night we went to the zoo. It was a very fun evening. They had trams taking everyone around the zoo so we didn't have to tackle any of those hills! The kids decorated crowns, ate corn dogs and popcorn, rode the carousel, checked out a racecar, fed the giraffes, rode the little train, got a very close up view of a lion, watched an elephant paint, won a canvas of the elephants trunk print we saw it make, and got all kinds of cool little gifts and things to bring home. It was neat being at the zoo in the evening and especially when it got dark. We only did about half of the things available to do - but we had to leave at a reasonable time to get everyone to bed. It was a wonderful event and will be annual from now on.

Sunday brought church, housework and some rest too.

Luke is off playing pick-up basketball after several Mondays in a row without being able to make it.

Tomorrow I have a doctors appointment while the kids are in school and Wednesday Nathan has field day at school and I will drop Julia off at Tammy's so I can be with him and help him to do activities and keep him from doing things he should not be with low blood counts. So - I will probably write again on Thursday after his clinic visit.

Thanks for checking in!

Friday, September 9, 2005

2005-09-09T08:25:00.000-07:00

Friday, September 9, 2005 7:41 AM CDT

TGIF!

Nathan went to the clinic yesterday and we were happy to find that his platelets went up and his ANC stayed around th same - which is a number that is fine for his immunity. He hemoglobin dropped a little - but not into transfusion range and he does really well with low hemoglobin so we are not going to worry about the weekend. Hopefully it will bounce back up since his platelets are coming up. His doctor wasn't in so we didn't find out if he has heard anything from the doctor in New York. Nathan is still coughing some, but his lungs sound clear again. We are giving him the inhaler when the coughing gets bad - but have no feel for why he is coughing. His leg pain seems to have gone away again. I couldn't get his bone scan scheduled until the 16th - so we still have to wait a week for that. We did collect his urine yesterday and they did some blood work that, if elevated would indicate a problem - though the problem could be cancer or some other medical problem so we would have to start looking. I imagine we will find out the bloodwork results on Monday.

Tonight Luke and I are going to a banquet for my choir and tomorrow night the whole family is going to the zoo. It is a special program of some sort for pediatric oncology patients. That is about all we know about it - but I am guessing we might get to do some things there that people normally don't get to do - so we are hoping it is fun for the kids. I am a little worried about getting around. Our zoo is built into the side of the mountain and has very steep hills.

Well - that is about it for goings on here. Hope you all have a good weekend.

Tuesday, September 6, 2005

2005-09-06T08:24:00.000-07:00

Tuesday, September 6, 2005 4:40 PM MDT

An update on Nathan's appointment today...

His counts are actually down. His doctor said that the 20�ncrease he got in chemo could definately be enough to make the change from last round when his counts didn't drop at all. The good thing is his white blood count and ANC which represent his immunity are fine. His platelets are quite low and his hemoglobin (red blood) is lower as well. We'll go back to check on Thursday so he can get platelets on Friday if needed.

His cat scan report was the usual slightly iffy results. There are definately no more tumors in there. There were two lymph nodes in his abdomen near his chest that may be slightly larger than in the last scan. Nathan's doctor is not worried about them. He feels it is probably changes from surgery. It will be one of those things we just watch.

Nathan will have a bone scan to see about the leg. I will schedule it tomorrow. They will also do the urine test for neuroblastoma on Thursday. That will take a week or so to get back.

Nathan's local doctor will email the doctor in New York and we'll see if there is any news about the vaccine study.

Monday, September 5, 2005

2005-09-05T08:11:00.000-07:00

Monday, September 5, 2005 3:49 PM CDT

Hope you all had a good Labor Day weekend.

I am trying to think what we have been up to. Nathan finished his chemo on Saturday. He threw up last night once, but that is the extent of it so far - so not bad. He does seem a little more tired and so we'll see how the beginning of this week goes. He is still coughing some too. His leg pain is back. We want to do something this time to find out what is going on. It could be cancer or it could be neuropathy or something completely different. Either way - we really need to know. If it is cancer then we need to be doing a different treatment for Nathan than we are doing currently. We'll see what his doctor says tomorrow.

As far as our weekend as a family...well...Friday afternoon the kids and I went to a friend's house and the kids played while the moms cleaned. It was the first time that Nathan has played with kids other than at Tammy's (daycare) for a very long time. Too long... He was hooked up to chemo but it didn't stop him. Friday night Luke and I watched a movie - I wouldn't normally mention it but we both really liked it so I thought I would pass it on. "Life as a House". Now it is about a man who is dying but really it is a movie about people and we both really thought it was very good but a little sad at times.

Saturday we ran some errands, had lunch outside at Sonic and thoroughly cleaned the van inside and out. It was the first time the kids helped to wash the van and they and Luke had a wonderful time.

It was a normal average Saturday I suppose - but a really good day for our family for that same reason!

Sunday we went to church. Julia sang "Our God is an Awesome God" all the way home in the van - Luke and I really got a kick out of that. They both really enjoy Sunday school. We went to a birthday party in the afternoon for a little girl turing one that goes to day care with Nathan and Julia. We all had a good time.

Today Luke and I (and the kids to a somewhat lesser extent) cleaned all morning long and then went to a baseball game (Colorado Springs Sky Soxx). It was the first we have gone to as a family. Nathan really enjoyed it. Julia was a bit bored. I was a bit uncomfortable! All in all we had a nice time. We left in the sixth inning.

So - that brings us to now. Tomorrow both Nathan and Julia go to school and then Nathan goes to clinic in the afternoon. I will try to muster up the energy to go to choir practice either tomorrow or Wednesday night. Luke doesn't get much of a mention I guess because he will be working, as usual!

I am hoping that Nathan feels well enough to attend school all week. Of course - we may throw in some extra scans to figure out this leg thing and that could affect school. We should see a CT scan report tomorrow and are hoping it contains no nasty surprises.

I put some pictures from August on out family web page...see link nearer the top of the page or at the bottom.

Wednesday, August 31, 2005

2005-08-31T08:09:00.000-07:00

Wednesday, August 31, 2005 7:48 PM CDT

/* Friday 8am
Luke here doing a short top post. Nathan had his CT scan yesterday. He did great, as always. It is almost not worth mentioning anymore. He just automatically goes where he needs to go and does what he needs to do. We are, of course, a little nervous any time we do the "scan thing" and appreciate everyone's well wishes. I don't know if we will get a preliminary report today or not. We will post information when we get it.
*/

Nathan started chemo yesterday afternoon and is doing just fine. So far there has been no nausea or diarrhea. I ran around yesterday trying to get a special adapter for his inhaler. I wasn't able to get it until today - but Tammy, our wonderful day care provider ;) - had one for her daughter and so she showed us how to use it. It didn't go to well because Nathan didn't really get the idea of taking a large breath in. Today I was just way to tired to attempt it again and so I am waiting for Luke to help since he has the expertise the the whole thing.

Last night after leaving the kids at Tammy's I went to Nathan's back to school night. It was really informative and I was happy I made the effort to go. I am really impressed with his school, teacher and curriculum. He has 26 kids in his class - which seems like WAY too many for one teacher but somehow he does seem to be getting the attention he needs. I think he is fitting in OK with the class. He has had a few instances of kids pushing and that kind of thing - but also relates conversations he has had and one mom told me how much her son likes Nathan and that the day Nathan had to leave early her son was crying about it when she picked him up. So all in all it seems to be going just like Kindergarten should. I have been trying to set up a playdate with a boy in his class but with him starting chemo again this week it has not been able to happen yet.

Tomorrow is the Cat scan. I will have to go give him his oral contrast at 11:00 at school - but I am glad we were able to arrange it so he didn't miss any school.

Well - I really need to get the kids to bed. I just called for them and heard Julia saying something like "I'm not going anywhere right now!" in a very SNOTTY voice. So - it looks to be an unpleasant bedtime......

Monday, August 29, 2005

2005-08-29T08:09:00.000-07:00

Monday, August 29, 2005 5:48 PM CDT

I guess I will start with medical and end with personal today.

Nathan's counts are great! It seems they were not really affected by the chemo. This is puzzling. We will never know how low they may have gotten between Wednesday and today - but they couldn't have even come near anything at all neutropenic. His doctor reminded me that the severity of the side effects does not have anything to do with how well the chemo is working - but he also did decide to up his dose on one of the chemos by 20%. Since his counts are so good he is going to start chemo again tomorrow instead of next week. He will go into the clinic tomorrow and then have it at home through Saturday. So - we will pretty much be stuck at home inthe afternoons this week - but at least we will be home and not int he clinic most of the week.

On Thursday Nathan has a CT scan to use as a "baseline" scan post-surgery. Please send prayers and positive thoughts for no suprises in it. As far as the leg pain - it seems to be gone. I hadn't asked Nathan about it and today he told the doctor it didn't hurt anymore but he couldn't remember when the pain had gone away.

One thing wearing on me currently is that in two weeks Nathan has lost .8 kilograms. This is almost 2 pounds. he currently weighs 37 pounds. He is 46 inches and so that is very, very skinny. Nothing really has happened in those two weeks to warrant the weight loss. His doctor syas it may be just htat his body is still fighting to keep weight on from the surgery and chemos. He wouldn't speculate further, but gave him a good physical exam - I think looking for any obvious reasons. Of course I am a worried that it may be caused by some bad thing....but I am trying to put that out of my mind. Meanwhile he suggested putting Nathan on pedisure. I will try - but Nathan does not drink a whole lot - and when he does they are small sips and I just know we won't be able to get much of that into him. I am hoping to find some other way to get extra calories in him.

On to the lungs. They sounded better today - however on an unrelated note his doctor heard some wheezing in his lungs. He asked if there was any family history of asthma. I told him Luke had bad childhood asthma. He said that often it starts with hearing it in the lungs before we ever hear the child wheeze. He wants to put him on an inhaler. I didn't get to talk in depth about that...like - is this a permanent thing or just as needed. He called in a prescription and I will bring it to the clnic tomorrow and they will show us how to use it. I figure I will take that time to ask more about the whole potential asthma thing. Frankly - I am a little overloaded with having three major things we were trying to figure out in one appointment.

Bottom line is - his counts are good, he feels good, he currently has a little cough, and he is very skinny. So - all in all - a fine state to be in and starting chemo early is a good thing in the cancer fight.

On to non-medical. We had a wonderful weekend in the mountains. My brother got married yesterday and we had a wonderful time with family. Luke even took the kids on a little hike to a waterful yesterday morning. He was so proud of them for not complaining about the walking and he really had a great time with them. Unfortunately, my current aches and pains in my pregnant state prevented me from joining them. Both kids were incredibly well-behaved for two long dinners, pictures, and ceremony. We had a very late drive home last night. The best I could do was stay awake until Luke had navigated the curvy mountain passes and then joined the kids asleep. A big thanks to Luke for cheerfully driving us all home late last night. Luke just left for a business trip. He will be home in time to take Nathan to his CT scan on Thursday since I cannot be in the CT room.

My current stress right now is INSURANCE! I am fighting to get the insurance corrected for both Julia and Nathan (Nathan's being from sometime in 2003!). Meanwhile bills are being sent to collection that are incorrect and so I don't want to pay them until they are fixed but I also don't want to ruin our credit. UGH! I HATE insurance. I am a CPA and have trouble sorting this all out.

So - I think that touches the tip of the iceburg anyway. Luke and I both are feeling like we are flying blind with Nathan. We don't know the current status of his disease - we don't know what what treatments he will be having. We don't know if every little tiny weird physical thing with him is cancer or not. It is not a fun place to be - so I just keep reminding myself to enjoy each day. That was especially easy to do this weekend with family and a wedding. Life goes on.....

Saturday, August 27, 2005

2005-08-27T08:01:00.000-07:00

Saturday, August 27, 2005 8:34 AM CDT

Nathan has had a good end of the week. He complained once about his leg - after he had gone to bed and he and Julia kept coming out of their rooms for this and that - so I don't really think it was anything much.

His cough is still there - but sporadic and not bothering him. He did well at school Thursday and Friday. His counts are probably down some but we won't find out until Monday.

We are off to the mountains today. We need nothing medical to arise this weekend while we are so far away from medical care. Please send your good thoughts our way.

The little boy, David, who was in the ICU with Nathan passed away on Thursday. We are heartbroken for his family. There are some other children in our cancer "family" who are on their last days. It is sobering. It reminds us that every day we have Nathan with us, despite what his future may hold, is precious. That goes for all the people we love.

Tuesday, August 23, 2005

2005-08-23T07:59:00.000-07:00

Tuesday, August 23, 2005 8:15 PM CDT

Update - Wednesday August 24 4:58 PM MDT

Nathan woke up feeling much better this morning and I sent him to school. He had no problems at school and his cough is better. I took him to the clinic and the doctor thought his lungs sounded a little bad and so we went downstairs for an xray and he definately has something going on there. Who knows if it is viral or bacterial - but he has now had two rounds of IV antibiotics - so if it is bacterial it is being covered. He feels so much better today though. I am also glad there is a possible explanation for his fever yesterday - cancer kids and unexplained fever are not a good combination.

As far as the leg pain - the doctor wants to wait a little bit and see what happens. It seems to be right at the muscle and so a strange place.

If he continues to do well then he will not go back to the clinic until Monday. So - crossing our fingers!
************************************************
Well - I jinxed myself about the clinic because we were back today and will be tomorrow too. This morning Nathan was very tired when he got up. We figured it was from coughing a lot in the night. I cajoled him into going to school. I got a call at 9:30 that he was in the nurse's office and his leg hurt. I talked to him and asked him if he wanted to go back to class or for me to come get him. He said that what he wanted was for me to make it so he could have tylenol at school when he needs it. Then he said he would go back to class. They called again around 10:30 and his leg was hurting again so I went and got him. He had apparently not participated in anything all morning and after sitting on a basket in the gym watching the kids play it started hurting again.

I brought him home and he really seemed to just be tired. He was walking fine and not limping at all. I could move his leg any which way without it hurting. The place where his leg hurts is the top fo his right thigh- a weird place. Luke was finally able to isolate it. It didn't seem to be bothering him anymore unless we really pushed on it.

I had them have quiet time in ther beds and Nathan did fall asleep. When he woke up he had a temperature of 101 so I took him to the clinic. When we got there it was back down. They took blood cultures and gave him an antibiotic. His cough is still bad but his chest still sounds clear. They want to keep listening to it though. His white blood count is high indicating that his body is fighting off something. His temperature was back up a little bit before bed.

The leg thing - which is a separate issue - will be decided tomorrow. Nathan's regular oncologist was out but the other one thought that since he is so high risk we had probably try to figure out what is going on. The reality is - it is likely just either a bruise, pulled muscle, etc or it is a tumor in the bone or bone marrow. His last MIBG scan was 2 months ago and the reality of this disease is that it could come on that quickly. Now that he has relapsed - we have to be even more concerned that every little ache and pain is the cancer. So much for all the positiveness you guys have thanked me for! But really - I literally take things day by day. I don't know what Nathan's future holds - but I don't know anyone else's either and I can't live life worrying about it. I have done enough of that to know when it is time to worry (like waiting for results) I will, the other days I need to push it out of my mind because it isn't going to do any good or to change anything - just ruin my day.

So - we'll see what tomorrow brings...

On a different topic - Julia had a really good time at preschool today. When she came home she was so happy. She hasn't been so happy lately and so it was wonderful to see her that way and obviously a very good thing for her.

I'll update tomorrow.

Monday, August 22, 2005

2005-08-22T07:58:00.000-07:00

Monday, August 22, 2005 7:29 PM CDT

Things continue to go well here. Nathan finished his chemo with no problems. He developed a cough this weekend that is bothering him, but otherwise is doing great.

Nathan went off to school today and seemed to have enjoyed himself. I love hearing about all the things he did and learned each day. Today he learned to write a lower-case f.

After school I took him to the clinic. His counts are good. His hemoglobin continues to be a little on the low side - but stable. His other counts are great. We should start to see the effects of the chemo on his counts late in the week. He will get them checked again on Friday. He got a full exam and the good thing was that though his cough sounds bad - his lungs are perfectly clear. This confirms our suspicions that the cough is from his allergies. Other than being skinny (he has lost a few pounds since the relapse) he looks really good. When he got out of kindergarten he ran over to me. I love seeing him break out into a spontaneous run.

So - no chemo this week - no clinic until Friday. Julia starts preschool this week. All in all it is looking to be a good week.

Friday, August 19, 2005

2005-08-19T07:57:00.000-07:00

Friday, August 19, 2005 8:01 AM CDT

Nathan continues to handle the chemo well. He has had no more nausea, vomitting or diarrhea. He seems a little bit more tired and emotional - but that could also be from his first week of school. He has continued to have lots to tell us about his day at school and is still enjoying it.

Today is the last day of chemo and then we will take the line out of his port for the weekend. Monday he will get his counts checked at the clinic. I imagine he will also go back either Thursday or Friday too.

Julia went to her preschool orientation yesterday. She was pretty quiet and shy, but I don't think it will take too long for her to get into it. She already knows her teachers so that should help. She starts on Tuesday.

I would like to ask for some prayers for a little boy and his family who was in the same room at the ICU as Nathan in NY. He had the same surgery as Nathan - to remove his tumor and unfortunately had complications afterwards and is in very serious condition. His name is David. Sometimes we forget that all the treatments to save these kids lives are themselves so dangerous. It is very sobering.

Well - off to get Nathan ready for school...

Wednesday, August 17, 2005

2005-08-17T07:56:00.000-07:00

Wednesday, August 17, 2005 7:31 AM CDT

So far, so good with this chemo. Nathan did throw up yesterday morning a few times. His allergies were bad and he had a lot of mucous and was trying to cough it out and so I think he was more suceotible to vomitting. We gave him some medicine (like benedryl) that did the trick. We gave him some before the oral chemo last night and so far this morning he is fine. He did have one episone of diarrhea last night but it apprears to be isolated because there was not more afterwards. We will see how today goes.

Nathan did fine with the infusion again yesterday at the clinic and so we are set to give it at home the rest of the week. They were giving him an anti-diarrhea medicine at the clinic that cannot be given at home and so if he gets diarrhea during the infusion at home we may need to finish in the clinic.

His second day of school went well. His current problem is that they go outside to eat snack and play and he hasn't managed to eat his snack quickly enough to get to the playground. He is not a quick eater - so he will just have to prioritize I guess. I love sending him on that bus - to go off and do his own thing...he is ready for that and I am so happy for him.

Julia has her preschool orientation tomorrow and starts next Tuesday. I know she is going to LOVE it. Poor thing was trying to tell her grandparents all of Nathan's ancedotes from Kindergarten - which was making him mad. She definately needs her own thing.

The other little Gentry seems to be doing just fine. He or she is pretty active and I am enjoying feeling him or her roll and kick.

If all goes well - Nathan next goes back to the clinic on Monday for counts.

Monday, August 15, 2005

2005-08-15T07:45:00.000-07:00

Monday, August 15, 2005 8:51 PM CDT

First day of school was a success. Yesterday our neighbor who is in the fifth grade offered to sit by Nathan on the bus and so that was really nice for Nathan. He thoroughly enjoyed riding the bus. I drove over and met the bus and left him at his classroom and went to talk to the nurse. When I left (an hour later) they were having snack outside. He was all smiles when we picked him up and said he had a good time. He also said it was kind of hard because they had to sit on the carpet alot and listen to the teacher tell them things.

His chemo went smoothly. Since he did not have any trouble during the infusion we should be able to do it at home for the end of the week. He will go back tomorrow for the chemo again just to make sure he is still handling it fine. His counts are pretty good to start the chemo. We just have no idea how hard hit they will get since he has proven to have trouble recovering them. We are also waiting to see if he gets diarrhea. I am just really hoping if he does - it can be managed with medication and he feels OK and can go to school. If he starts getting any we have to dose him every three hours (all night long too) so it would be really nice if he doesn't get any at all - but as long as he can keep up his activities with it I will be happy.

I don't think I heard him complain about pain from his incision at all today. So - that is good progress.

I put some pictures in the photo area (view photos at top and bottom of page). He didn't really want us to take any but we told him there were so many people who care about him who really want to see some.

We are so thrilled that he got to start school today. It has been my hope since he was diagnosed to get to this day and it is such a big step in Nathan's life - I am just so happy for him.

Sunday, August 14, 2005

2005-08-14T07:44:00.000-07:00

Sunday, August 14, 2005 9:12 AM CDT

We are home! The trip home was uneventful. Nathan is doing even better at home. He has slipped back into playing with Julia and going up and down stairs, etc. without hesitation.

We were all so happy to see Julia. She and Nathan are having a wonderful time playing.

We are off for school shopping today. Tomorrow Nathan will go to school. I have to meet with the school nurse first thing and answer some questions for her. He will have chemo in the afternoon.

Don't worry - we'll take pictures!

Thursday, August 11, 2005

2005-08-11T07:43:00.000-07:00

Thursday, August 11, 2005 7:34 PM CDT

Update Friday August 12, 2005

~~Just posting to say we had a really good time at the zoo today and mostly to say I finally update our family pictures. See the links in the orange type above.~~

************************************************

We have been having a nice time out of the hospital. Yesterday we had a leisurely morning and then headed down to Times Square to go to Toys R Us and out to lunch. We rested the rest of the day. Nathan is still going strong. He is getting around well. He actually attempted running around this afternoon. He is having some pain from his incision - especially when he lies down. He is on only Tylenol when he requests it.

He had his follow-up with the surgeons today and they say he is doing great. Everything is healing nicely and they are very pleased. He is cleared for normal activity.

We had a chat with his oncologist. The plan is to start the chemo on Monday. When the vaccine trial opens in about 6 week we will return. They want a CAT scan done in about 4 weeks - but they feel we should just do that in Colorado Springs and send the film to them. They want to have a "baseline" cat scan to use to compare future scans to. He will probably have an MIBG scan when he goes out to start the trial. He should normally only have to spend 2 days in the clinic for each round of the vaccine. If the vaccine is delayed we may continue the chemo if Nathan tolerates it well.

We talked about collecting more stem cells from Nathan. The doctor thinks it would be a good idea to try - but we all feel the likelihood of a good collection is not great and it is not an insignificant thing for Nathan to go through - so we will have to mull it over.

Back to our day today - after the clinic we walked down to the candy store and then had some lunch. It was very hot and so we went back home and Luke and I crashed - Nathan probably could have kept going. Tonight we had dinner with our friends John and Judy and then Luke went off to have drinks with an acquaintance from college. Tomorrow we have promised Nathan we will go to the zoo and on Saturday we will fly home!

So - I may not update again until we get home unless something crops up.

Tuesday, August 9, 2005

2005-08-09T07:42:00.000-07:00

Tuesday, August 9, 2005 2:34 PM CDT

We are out of the hospital! Nathan had a real food dinner last night and tolerated it just fine. We went straight from the hospital to the toy store where Nathan picked out some toys and played with the train set. He looked very tierd on his stroller ride back, but we came home and Luke and I have our feet up but he is on the floor playing with his new toys. He is doing great. He was complaining about not being able to walk fast but we assured him he will be running around soon.

We will go back to the day hospital on Thursday to see the surgeons (they will remove his stiches) and see the neuroblastoma team. We hope to learn a little more about the vaccine and its time requirements.

Tomorrow we may go to Times Square or some other outing that Nathan requests.

Monday, August 8, 2005

2005-08-08T07:42:00.000-07:00

Monday, August 8, 2005 12:16 AM CDT

Update 8:55 PM

Well - first off his bone marrow is clean....very good news. We have a tentative game plan pending a meeting of the neuroblastoma team tomorrow afternoon. The plan is 2 rounds of chemo (irronotecan and temador). These are the two agents that we were due to start before surgery. The main side effect will be diarrhea and his counts will hopefully stay in a good range to go to school.

They want to get scans in about 4 weeks. We might delay that a little because after the 2 rounds of chemo Nathan will probably enter into a new trial for a neuroblastoma vaccine being done here in NY. We don't have any details about it - just that it is due to open in 4 to 6 weeks. He won't be eligible for many studies because he most likely has no measurable disease anymore. Not a bad thing - just not too many options.

He will most likely not be doing any antibodies again because they work mostly on bone marrow disease and prevention for relapse in bone marrow and not on soft tissue tumors like the one Nathan had.

He still should be on track to get out of the hospital tomorrow. We will go back to the surgeons at the end of the week and then we are free to go. Tenatively we will be coming home on Saturday. Nathan may start chemo as soon as Monday. The first day of school is Monday and it is looking good that he will be there. Chemo can begin in the afternoon.

So - keep fingers crossed that all these current plans hold and he gets out tomorrow and we get home this weekend.

***************************************************

Nathan is having a really good day so far. They let him eat regular food and he is really enjoying it. We got him up and walking and he is doing great with that. He stayed and played in the playroom for a while. He is walking without our assistance.

We haven't talked to any oncologists today about treatment. I asked the nurse to find out if they want a HAMA test because his doctor mentioned (last week) that he would do one tomorrow and so they would need to draw the blood today. We are also hoping to hear the bone marrow results soon.

Luke and I are assuming they will let him out tomorrow. There doesn't seem to be much reason to keep him here anymore. Once again - no one has told us anything though.

I will update with more later if anything new crops up.

Sunday, August 7, 2005

2005-08-07T07:41:00.000-07:00

Sunday, August 7, 2005 7:26 AM CDT

Good morning.

Yesterday was a good day. They kept Nathan on sips of clear liquids only. His stomach did get somewhat distended from that - but not too bad. It looks hopeful that he will be back on clear solids today. Other than the eating he is doing great. He is moving all around and sitting up. We will probably get him walking today. He stayed awake all day yesterday and was in a good mood.

He had a good night. Luke got him pain medication once in the night. He seems to only need it twice a day. He was up every 2 hours to pee - they may slow down his fluids tonight.

Sorry I didn't get the hospital info posted. I figured that it would take too long to mail anything before he was out of here.

Some of you have asked about Julia. She is doing just fine. Luke's parents were taking care of her until yesterday and now my parents are at the house with her.

So - nothing much going on (which is good!). We are just anticipating our talk with the oncology team this week.

Saturday, August 6, 2005

2005-08-06T07:40:00.000-07:00

Saturday, August 6, 2005 5:44 AM CDT

Well - we did get moved back to Memorial Sloan Kettering yesterday around 5:00. The end of the day was not as smooth as the beginning because Nathan started having diarrhea. It was frequent and so painful to be lifted around and then his bottom has become very sore as well.

We took the tunnels to the hospital instead of an ambulance so Nathan was quite sad about that but he got over it. It was really sad to see him be so upset because it was the one thing he was looking forward to in all of this.

He was up quite late last night because I noticed his tummy had become quite distended and he had a warm red patch on it as well. They took him down for an x-ray (which was not fun with all the moving to and fro). From what I understand his bowel is swollen from starting to work again. It looks better this morning.

He had been on a clear liquid diet and they changed it so he wouldn't eat until they figured out his tummy situation. I haven't heard this morning what the plan is. He was enjoying eating the few food he could yesterday so I hope it is OK for him to eat them again or his is going to be very unhappy.

We don't expect to find out anythign about future treatment until next week. Being the weekend, we will not see any of the main doctors.

We will update again later.

Friday, August 5, 2005

2005-08-05T07:40:00.000-07:00

Friday, August 5, 2005 9:17 AM CDT

Luke here. Susan posted a pretty long entry last night, so if you didn't check it then you might want to visit the journal history.

I stayed with Nathan last night and he really had a pretty good night. Once we settled in to sleep we stopped hassling him about breathing deep and coughing. He was in some pain still from his incision and struggled a bit staying in a comfortable position, but really slept pretty well. This morning they hear good bowel sounds and he has started sipping juice. He isn't too terribly interested yet, but making progress. He had been off any supplemental oxygen for almost 3 hours when I left this morning and he was holding pretty well on his own. There was a bit of confusion this morning because his hemoglobin count showed a drastic drop. Normally they would have been worried about internal bleeding, but he looked so good that they thought the reading was probably too low for some reason (e.g. dilution) and they were rerunning tests. The quick tests showed that the initial readings were incorrect and that he is doing fine.

The intensivists and surgeons are very happy with his recovery. He looks like himself this morning with all of the puffiness and swelling coming down. They plan to pull his catheter and a-line (arterial IV) today and it looks like it won't matter if there is room in the observation unit because he is doing so well that they all agree he can go straight to "the floor".

Once we are back over at MSK we will post hospital room information and hopefully get an idea of how long they think we will be in. Several people have inquired about sending things. Please email Susan and I if you want and we can get an address to you. We will have better internet access from over at MSK and will get emails and be able to easier post updates.

Thanks for your continued support. No matter how much we say that in these posts, we can't convey how much you all prop us up and help us through this.

Thursday, August 4, 2005

2005-08-04T07:39:00.000-07:00

Thursday, August 4, 2005 9:30 PM CDT

This is Susan. Nathan is continuing to do well. Now that he has been off the ventilator for a while he needs to be taking deeper breaths and coughing more to keep his lungs inflated. We are having to hassle him to do it. The coughing hurts his incision and so he is reluctant (of course). He is being very good and very brave about it all. He has even attempted a few smiles today.

His chest tube was removed this afternoon and as soon as his bowels move a little he will be on his wa y out of the ICU. They expect him to go back to Sloan tomorrow. He will go to the POU (pediatric observation unit) at first. Right now it is full - so we will have to see if a slot opens up.

He was awake a good part of the day and watched a lot of TVs and movies. It was nice to be able to have a conversation with him after having him trying to tell us things with the tube down his throat.

His puffiness has gone WAY down today. We almost felt as if we could just watch it going down. After surgery - these kids are EXTREMELY puffy. Nathan could really only open hisright eye a slit and his left not at all until later this morning. He is starting to look like Nathan again.

After his surgery ended he was in the recovery room getting ready to be moved by ambulance across the street. They were breathing for him with a hand respirator and he was hooked up to everything and very puffy and there was about 8 people working on him. It was surreal...I just looked at Luke and told him it was just so wrong see your own child like that. I know we have become way desensitized to all of these things medical - but for some reason it really hit me watching him like this - it just is not right.....The nurses were saying how good it was that he copes so well (this is while he was having some unpleasant procedure done today) and I said that yes - it is good, but it is really sad that he has to.

I want to thank everyone for their thoughts and prayers and your guestook entries. We really appreciate all of you.

I am at the apartment tonight while Luke stays with Nathan (we were both there last night - Luke slept in a chair most of the night while I got the "chair bed"). Luke will probably update on how his night went when he come back here in the morning.

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Thursday, August 4, 2005 8:04 AM CDT

Just a quick update. Nathan's move over to the PICU in the other hospital went fine. He really didn't have any complications through the night. I was out of the room when he first woke up. Susan tells me he was pretty upset by the tube down his throat. He was more awake and aware of that then we would have liked, but he slept pretty well through the night. I guess he calmed down in not too long (10 to 15 minutes). Then he went into brave Nathan cope mode and just dealt with it. He would wake up from time to time and be aware of the tube, but didn't fuss about it much. They extubated this morning. All of his tests and bloodwork show that he is recovering pretty well. It was nice to get extubated so quickly. He doesn't seem to be in too much pain and it sure is nice to hear him talking a little after being extubated.

We don't really have an idea yet as to when he may move back to Sloan. I expect that he will stay in the PICU again tonight at the very least. I think they will wait until his chest tube is removed and he is less reliant on the pain medication.

As always, thank you for your prayers, good thoughts, and notes of support.

2005-08-02T07:38:00.000-07:00

Tuesday, August 2, 2005 5:49 PM CDT

Surgery update 2:00 PM

The surgery is done. It was very stuck to the kidney and the veins surrounding it and so they removed the right kidney. The only other structure it was stuck to was the vena cava (major artery) which the surgeon said needed many stitches. They did the intraoperative radiation and that went fine. The surgeon confirmed the patholgy while the surgery was going on it is is neuroblastoma (though matured - probably due to chemo - ganglioneuroblastoma). Nathan is in recory and we will be heading up to see him in a few minutes.

As the surgeon said - and we knew - Nathan will need further treatment - when he starts recovery we will be discussing what that will be.

The next update will probably not be until tomorrow unless something changes. He will be heading across the street to another hospital for a few days to be in ICU.
***************************************************
*** Wedsday Quick Update ***
Nathan is in the OR. They were pretty quick about things this morning. He basically went in at around 8am ET. He was getting bone marrows done first. As of 9:35 they were still positioning him for the surgery. It will be a very long day of waiting. We will try and update later today with status. Thank you for your thoughts and prayers.
***

Greetings from New York. Everything went very smoothly today. When we got to the airport we found out they decided to take us to New York first - so we went straight there and landed around 2:00. We were at the hospital by 3:00. They did blood work and exams and we talked to the doctors. We also had to give Nathan a bevy of medicines to prep him for surgery.

The surgeon thinks there is something there and he showed it to us and compared it to a prior scan they had. So - I don't know what the mystery was about something being there or not - but it looks like there is someting there. He may or may not remove the kidney depending on how stuck the tumor is to it. We told him we were all for removing it if would help get the tumor out of there. He is gong ahead and doing the same "big" surgery as last time. They will use the same incision which goes from his abdomen and wraps around towards his back between his ribs. He will have a chest tube, epidural, some IVs, a urinary catheter, nose tube and will be intubated. He will be transported across the street by ambulance to the ICU at NY Presbyterian hospital and after a few days he will be back at Memorial Sloan Kettering at the observation unit and then to the regular inpatient area. We expect him to be in the hospital for a week.

They will also be performing bone marrrow biopsies during the surgery. Those showed clear before and it is crucia that they still are. We will get initial results in a day or two from those.

The radiation oncologist talked to us about how that is done and there really aren't any risks from doing it intraoperatively so we are glad they are doing that. She said it would add about 45 minutes to the total surgery time.

So - we need to be at the hospital at 6:15 tomorrow morning and he should be the first case of the day. I am sure it will be an hour or two before he goes in to the OR and then I imagine he will be in the OR for many hours. Last time it was around 8 I think. We will update as we can - we will probably have someone update when he gets out and we go to the ICU because we won't have computer access there.

We are staying at my aunt's apartment since she and my uncle are in Arizona at the moment. Tomorrow night I expect we will stay at the ICU and then switch off nights spent at the hospital. I need to be careful because last time I got really sick from the stress of the surgery and from the lack of sleep.

Hmm - I feel like there is more to say but this seems long as it is.

We'll update tomorrow.

Monday, August 1, 2005

2005-08-01T07:37:00.000-07:00

Monday, August 1, 2005 2:42 PM CDT

BREAKING NEWS!!!!

We got a call this morning from the oncologist in New York and he said that since the MIBG showed something they wanted to at least go in and take a look and he said they could actually do the surgery on Wednesday.

So - I ran Nathan over to the clinic to check his counts and his plateles were a nice number and the surgery is a go. We will be heading out first thing in the morning on a private jet - with a stop in Columbus, Ohio. We are going through an organization called Flight of Hope. The founders of this non-profit sing in choir with me and approached me when they heard about Nathan. Amazingly they were able to drum this up for us on no notice! We have to get into the clinic in New York for some tests tomorrow afternoon. We will be cutting it close but will be in contact with the surgeons office when we land and will go straight over there. So please send good weather vibes our way - if he does not make it in time the surgery will be cancelled.

Julia will be at her babysitters and Grandparents will be on their way to take care of her while we are gone.

The surgery will be first thing Wednesday morning and we will try to keep this site as updated as possible.

We have no idea where we will sleep tomorrow night - but I imagine something will work out. The Ronald McDonald House has been full as late. I have a call into the social worker to see what the deal is.

We are very happy this worked out - a little more notice might have been nice!

Thursday, July 28, 2005

2005-07-28T07:35:00.000-07:00

Thursday, July 28, 2005 6:57 PM CDT

Update - Friday July 29 4:07 PM

I have pretty much determined the right scans were sent. I talked to the other local oncologist and he says he did look at the scans with Nathan's regular oncologist and they believe they saw a tumor. He explained to me that with as much surgery and radiation that Nathan has had - that it is very difficult to determine what is normal tissue, versus scar tissue, versus tumor.

I looked at the scan report (written) and it seems that a big reason that relapse was determined is that they see change from the prior CT scan. The doctors in New York do not have the prior scans - nor do they have the MIBG scan which showed the bright spot. So perhaps with that data they would feel differently - I don't know.

So - who knows...we emailed the NY oncologsit (still have not actually spoken to him) and told him we would be willing to travel to NY at any time if it would help determine what is going on. We will also furnish prior scans if that would be helpful. Meanwhile Nathan will start chemo as planned and we will just see what becomes of it all.

************************************************
Update - Friday July 29 6:57 AM

Hmm - well - I got an email back from NY...but I never would have expected the answer I got...that the NY radiologist saw NO recurring tumor. Now - I was there for the MIBG scan and I saw the big lit up area where the tumor is - so I am thinking perhaps the wrong scans got sent to NY. Perhaps the wrong date. There was also a confusion when the scan arrived in NY because the scan report was missing. So, anyway, I am certain there is a tumor - we just need to figure out what has happened with the scans and most of all I am relieved not to hear something bad.

The NY oncologist is pleased with our current plan for next week - to start Nathan on a single chemo agent - ironotecan. This chemo does not affect the blood counts and can be done at home most of the time. We do have to wait and see if his platelets are high enough. Yesterday his platelets were 55,000 and they need to be 75,000. His immunity is back to very normal/high numbers so hopefully they will stay in a good range and Nathan can start school.

So - the drama continues and I will update again when we have more info.

*************************************************

Good news and also some concerns.....

It has been a roller coaster day.

First off - I had my appointment and the baby looked just fine.

We got a call that the surgery has been now rescheduled for August 29. Due to doctor vacations we will have to also go on Aug 18 to meet with the radiation doctor and come back home. We are due to meet with the surgeon on Aug 25 and will stay for the surgery.

Concerns...well - Nathan's local oncologist is on vacation. We got an email late this afternoon from his NY oncologist saying he needed to get in touch with Dr. Palmer and had sent him a fax and email and had not heard back. Then he realized we had told him the local doctor was not in town and he emailed us again saying to get the other doctor to get the fax because he had some questions about NAthan's CT scan we sent there and that he was faxing the report HIS radiologist had written and needed to talk about it. This is all the information we have. I am extremely concerned that the NY radiologist has seen additional disease on the scan that our local radiologist missed. I can't really imagine a different scenario. I am terrified that he has more disease and this would change his status and make surgery not an option.

So - I guess tomorrow we will find out from the other local oncologist what this is all about but meanwhile we are very worried. I absolutely hate having partial information. I can't help but to think the worst.

Wednesday, July 27, 2005

2005-07-27T07:35:00.000-07:00

Wednesday, July 27, 2005 8:58 AM CDT

Just an update to tell you that we have had word that Nathan's surgery has been pushed back yet again to September 14. Luke and I are very uncomfortable with that and are waiting to speak to his oncologist in New York. At this time we are considering going elsewhere for surgery - though very reluctantly.

We are really hoping that we can ge things figured out when we hear from his oncologist - but itis likely that Luke and I will have to make a big decision about timing of surgery versus surgeon and whether or not to wait in order to do the intraoperative radiation.

We are extremely frustratated because every day this tumor remains in Nathan's body it has a chance to start spreading. If that should happen his prognosis is extremely grim. We just don't know if we can stand by and wait for surgery due to administrative and scheduling problems. If his cancer should spread in that time - because they couldn't get him on the schedule that would be devastating.

So - please send all your thoughts and prayers this way for a resolution and a decision that Luke and I can feel comfortable with.

I will update when we hear anything.

Monday, July 25, 2005

2005-07-25T07:34:00.000-07:00

Monday, July 25, 2005 4:47 PM CDT

Nathan's immunity is finally at a level that he can go out and about. We actually thought it would be that way today and went ahead and took him to church yesterday - just not to the nursery or Sunday School. His platlets are getting low again and so we will just have to see if they can sustain themselves or not. He will have his counts checked again on Thursday.

We got a surprise today - Nathan has a permanent tooth. We knew he had some loose teeth but weren't sure if it was normal or not. Well - the new tooth has broken through right behind the baby teeth. He is very happy to have an "adult" tooth now. Now we need to see if the loose tooth/teeth will come out on their own in the next week or two. If not, we will have them removed so we can make sure to do so while his counts are good and also before he has his surgery.

I am also off to the doctor on Thursday for another ultrasound. I am hoping the baby will be awake this time and we can get it to move around enough to finish checking all of its vital parts. As much as I have been being kicked lately I think there is a good chance.

That's about it...

Friday July 22, 2005

2005-07-22T07:31:00.000-07:00

Friday July 22, 2005 6:24 MDT

Nathan's counts are finally starting to move up. He actually has neutrophils today which mean his immunity is starting to build. His platelets responded really well to the transfusion yesterday going to 101 from 2. He had red blood today, but probably could have gone without since it was up just a tad. Unfortunately it was a long day at the clinic - they were busy and didn't get his blood hooked up until 2.5 hours after we arrived. We were there from 9:30 to 3:00.

He will go in on Monday afternoon to check counts again.

*********************************************
Thursday, July 21, 2005 5:20 PM CDT
Nathan's counts are STILL low.

He had almost no platelets (2,000) normal is over 140,000. He hasn't had any nosebleeds so we were surprised they were that low. However - he has a zillion awful bruises all over his body and head due to having such low platelets - he really looks a mess! He also needs red blood cells. He got the platelets today but will get the red blood tomorrow. His white blood count is stuck at .5 with no signs of the cells that will send it higher.

So - he will not be starting chemo next week and now there is a question of if he will even have the Temador - which could suppress his counts. He really needs to resume some sort of chemo to keep the tumor in check. BUT - he really needs good blood counts to have his surgery. I really wish they could get him in sooner. It looks like the August 1 date may not have worked anyway seeing how low his counts are still.

The good news is that he is feeling just fine. That is one reason he has so many brusises because he is running around playing like any normal 5 year old. The low counts mean that we are still housebound. It is getting really old by now. I am really hoping we see some sort of increase in his white blood cell count tomorrow - but we probably won't be able to take him out this weekend.

We are still waiting to hear that his surgery date is final. I had called just to see how many days before we would have to arrive and they said it was only pencilled in at this point. I really hope that it does not get moved back even further. His oncologist in NY is out this week - so we are hoping to find out more next week. Unfortunately Nathan's local oncologist is out next week.

Luke and I are tired and stressed....the house is a wreck..etc etc. Hopefully tomorrow will be a better day.

Monday, July 18, 2005

2005-07-18T07:12:00.000-07:00

Monday, July 18, 2005 8:34 AM CDT

UPDATE

Nathan's white blood count is up a little - he is still pretty low for immunity. His platelets were low - but held pretty good all weekend and so they may actually be on their way back up and so he wasn't given any.

He IS off the antibiotics. He is on neupogen to raise his white count - he got to choose if he wanted to get a new line in his port or to take the line out and get a shot for two days instead. He chose the shots and is happy to be without the line.

He will go back on Thursday for counts.

*******************************************
We had a very good weekend. We did go up to Grand Lake and it was so refreshing to be up in the mountains. We mostly just hung around the house and went to town. We drove through Rocky Mountain National Park on the way home yesterday and while it made for a longer drive we really enjoyed it. Nathan was surprised how cold it was at the top.

Nathan is feeling fine. We expect his counts to be up today (though his platelets will likely still be lagging behind). He goes to the clinic at 10:00 today. At the very least I hope he is taken off the antibiotics.

Mike and Kathy will head home tomorrow. We have enjoyed their visit so much and will be sad to see them go.

I will update on the top of this later after the clinic.

Friday, July 15, 2005

2005-07-15T06:38:00.000-07:00

Friday, July 15, 2005 3:48 PM CDT

Well as is usual in the medical world all of our plans have changed.

The scheduling of surgery with intraoperative radiation is hard due to the special operating room and two doctor's schedules so they can not do it until August 31. Obviously this is disappointing - but we have a reasonable plan in place.

Nathan will have 1 or 2 rounds of a low-dose chemo combination - irronotecan and Temador. They will not supress his blood counts very much and we are hopeful he can go to school while recovering. The irronotecan causes diarrhea and Nathan will be given an antibiotic to combat it. That may be a problem given his history. The Temador is in a pill form and the irronotecan is IV, but other than the first few days of making sure he handles it fine we can do it at home. So - it will hopefully be a very easy chemo to do without too much time in the clinic or hospital. The main concern is since we can't do the surgery right away that the tumor not have a chance to spread. The doctors feel that this plan should handle the disease while we are waiting. I just hope that it holds to be true.

Nathan's counts are on the way back up but he is still neutropenic and so he still needs to remain fairly isolated this weekend. We may be off to my brother's cabin for a night just to get out of the house and have a change of scenery.

Nathan's hair is mostly all out. He seems to be taking it OK. Luke keeps his hair shaved very close and yesterday he shaved his dad's head and so now all three of them look fairly bald. I think Nathan got a kick out of it (I know I did).

Overall - Nathan continues to feel good and play as normal. The doctor was impressed with his energy. His platelets are low - but we are going to wait the weekend and see how they do.

Thanks for checking in with us....I hope you all have a good weekend.

Monday, July 11, 2005

2005-07-11T15:48:00.000-07:00

Monday, July 11, 2005 6:59 PM CDT

Nathan had a really good weekend.

On Saturday we went for a picnic and he had a great time playing frisbee (he is actually quite good at throwing it) and he was really running around with good energy. The rest of the weekend was spent doing normal weekend things (but not out in public) and he really had almost normal energy - he was just more easily set off due to being tired.

This morning he had a little fever but none during the weekend.

We went to the clinc at 10:30 and didn't leave until 4:30 - so it was a long day. He got red blood and he also needed plateltes again already. He started coughing after the platelets, just like on Friday and this time he got hives too - so he is definately having an allergic reaction. This after after being premedicated - so I guess it is something we are going to have to deal with. He will most likely need them again this week. We are not going back until Friday and he will get them then. He may need red blood by then but we are gambling that we can get him through until next Monday. He is still on the antibiotics the rest of the week and we will reassess them on Friday. We have the schedule better for them - 6, 2 and 10 - but they run for an hour and it is hard for me to stay up until 11:00. Luke is out of town until tomorrow night and then he will take over the late shift. Luke turns 32 tomorrow...we will celebrate on Wednesday.

Mike and Kathy are still here and the kids are loving having them (me too, of course).

I am not sure what the rest of the week holds. We are free from the clinic all week - but can't take Nathan anywhere and we probably should limit his contact with other kids - so we will have to think of some activities.

We got half of his urine results which are slightly elevated for neuroblastoma. That is no surprise - we are glad they weren't very high.

That is about all I can think to write tonight...I feel like there is more - but once again I am just too tired to think of it.

Saturday, July 9, 2005

2005-07-09T15:43:00.000-07:00

Saturday, July 9, 2005 7:36 AM CDT

Something to be happy about this morning - we are at home and not in the hospital!

Yesterday morning Nathan spiked a fever. I was told to bring him right into the clinic. His fever went down when we got there and then came up some again while we were there. His regular doctor was off and the other doctor is a little less conservative. He had them give Nathan his platelets and some antibiotics and sent us home this weekend with IV antibiotics to give Nathan every 8 hours. He said he trusted us to know if something concerning was going on - otherwise the antibiotics would cover almost any potential infection. Nathan is feeling so good that I am so happy to be home. We got home from the clinic and his grandparents were there and he played the rest of the day until I did a forced rest period in front of the TV. This morning he has woken up very perky and happy. It is so nice to see.

His counts are still on the way down. He will be getting red blood on Monday and probably more platelets next week.

A BIG thanks to whomever anonymously sent me a generous giftcard to a local spa. I will definately use it and I can use the relaxation. That was so very thoughtful and supportive.

Well - hopefully the fevers will stay away and Nathan wil continue to feel good this weekend. We may go on a picnic if he feels good. That is the good thing about him being neutropenic in the summer - we can still get out and do things.

Wednesday, July 6, 2005

2005-07-06T07:50:00.000-07:00

Wednesday, July 6, 2005 8:46 AM CDT

There is not much going on right now. We are just waiting for counts to go down and back up. Nathan will get them checked tomorrow. He is nervous about having hisport accessed for the first time. I am hoping it isn't too bad because a bad first experience would not be a good thing.

Luke buzzed Nathan's hair yesterday. We knew his hair was thin - but I guess I just didn't realize how thin. He practically looks bald already. Oh well - guess it is good to get used to it. Truth is he is a very cute bald kid - it was just a bit of a shock to see him that way again. He was pleased (or acted please - he definately knows how to convince himself of things) with his cut.

Emotionally - both kids are not doing great. Nathan is of course worried and so he is getting very upset and hyper-sensitive about everything. He keeps complaining that his mouth hurts (no clue what that is about - it is too soon for mouth sores) he complains he is tired and any number of other physical things. When I say complain - I don't think that really describes it - he is complaining but in a worried way. I explained to him yesterday that any things he is feeling are just normal things and not cancer things and he does not need to worry about them. He is also getting nosebleeds for some reason. His platelets are not low yet - so it is just dryness and irritation. He gets upset about them though. He has also been up in the middle of the night with "bad dreams" but he is very calm and awake and obviously waking up and being lonely and probably thinking about things in his bed.

Julia is very emotional and acting out. She has taking to just plain screaming when she gets mad. She is willfully disobediant and just obviously is upset about all the goings on. She is very perceptive and so I know she is worried about Nathan. When she is not being horrible - she is being very sweet. It is one or the other. I don't really know what to do for her. I am having to punish her for her behavior but that is hard because I try to send her to her room when she is just screaming and carrying on but she won't go and it is hard for me to pick her up and put her there.

Now - the two of them are also having plenty of fun together and being happy. Like I said before it is one extreme or the other. I have hardly the physical or emotional energy to deal with it all. Thank goodness Luke's parents will be here soon.

Nathan just came to me all upset because Julia was playing with something he wanted. He says she is making him upset. I have been trying to explain to him the last few days that it is up to him whether he gets upset about something. He just falls apart at the littlest things - it is driving me crazy.

Well - enough complaining from me I guess. I know that things could be much worse - I guess it is just an adjustment period right now.

I just wish I could do more for their emotional states - I feel very helpless.

I will update again after his appointment tomorrow.

Monday, July 4, 2005

2005-07-04T07:40:00.000-07:00

Monday, July 4, 2005 10:14 AM CDT

Happy 4th of July!

The head cat scan is normal. That is such a relief.

Nathan will be getting out of the hospital in an hour or two if all goes well. He is feeling well. He hasn't had any nausea since yesterday morning. The chemo he had the first 2 days is really the one that made him feel bad. The one he is still having yesterday and today doesn't have too many side effects so hopefully he will not have much more, if any, nausea.

He is in very good spirits. The doctor asked him what he was going to do when he got home and he said "play!".

He will probably continue to feel good until the weekend when his counts should start to drop. They may not drop until early next week. When his counts drop he will be tired and feel a little sick. Fortunately his Grandpa Mike and Grandma Kathy are coming to visit on Friday and so he will have good company!

We have no plans for today. We will probably cook out and maybe find some sparklers. There is no easy way to see fireworks from our house and we don't want to make a big trip to do it - so we will skip them this year.

Nathan had some visitors yesterday. His friend Rachel came and he had a really good time playing with her and being silly in his bed. It is nice for him to be able to play when he is stuck in the hospital. Thanks for bringing her Kate!

Well - it looks like they are ready to disconnect him so I will update again soon.

Saturday, July 2, 2005

2005-07-02T07:39:00.000-07:00

Saturday, July 2, 2005 7:54 PM CDT

Nathan had a pretty good day today. As of about 4:00 pm his nausea kicked in and he felt pretty bad for awhile. He finally threw up around 6:00 and then immediately wanted his food back and felt better. He is also looking like the toxins have hit him. I'd kind of forgotten the look - but I remember it now.

Julia and I came in this morning and we all stayed with Nathan all day. They had the playroom open for a little while and that was great. Unfortunately on the weekends the playroom is only open if they have volunteers so on this holiday weekend I am not sure he will be able to go back in there. Luke took Julia out to lunch for a while. She wanted to be with Nathan - but also had some cabin fever. Luke took her home after dinner.

He is done with 2 of the 3 chemos now. He just has topotecan the next two days. He had cytoxin the past two days and with that they have to pump so much fluid through him that he has to pee every hour or so. It will be nice not to be doing that tomorrow.

His cat scan will either be tomorrow or Monday - we are not sure which day yet.

That is about it for now. I am hoping for a night without too much nausea.

(edited to add - the following pictures are from July 3 when Tammy and family came to visit Nathan in the hospital)

Friday, July 1, 2005

2005-07-01T07:32:00.000-07:00

Friday, July 1, 2005 2:16 PM CDT

Friday night....

Nathan did fine with chemo today. We wouldn't expect him to start feeling bad until tomorrow afternoon at the earliest. He had a good time playing and watching videos. Luke and Julia came at dinner and they played together and watched a video together in his hospital bed. It was very sweet to see them lying there together.

Julia was very upset to be going home without Nathan and Daddy. She was very sad to be going to bed alone. It is enough to make me wish sometimes that they didn't have such a close relationship because it tears her apart to be away from him. I don't know what it would do to her to lose him.

Julia and I will go in again in the morning and will just see what we feel like doing during the day tomorrow.

I am bushed since I have been up since around 4:30 this morning so I am going to bed!

**************************************

We are encamped in the hospital waiting for the chemo to arrive. We got the most isolated private room in the pediatric ward. A nice perk - but makes me realize how the medical world views Nathan.

We are in room 3514 at Memorial. If anyone local wants to visit us you can call us at 365-5538 and as long as we are up to it we'd love to see you. We will be leaving sometime on Monday. Luke and I plan to split time but also spend quite a bit of time with all four of us here. Nathan said he would not have any fun being in the hospital without his sister - so we are going to try to have them together as much as can be tolerated.

Nathan has recovered just fine from his port surgery and it isn't bothering him at all.

He will be having a head CT later on in the weekend. We thought it would be good to have a complete picture of everything going on just in case we were to find something in there. It would be devastating if we did find anything in his head so please start your prayers for a clean CT scan.

I will update on top of this later.

Thanks for checking in.

Wednesday, June 29, 2005

2005-06-29T07:59:00.000-07:00

Wednesday, June 29, 2005 3:37 PM CDT

Nathan's surgery went fine. He had a bit of trouble afterwards being quite nauseous and throwing up so we stayed in recovery for a while. He is a little sore but no big deal. He is currently playing and just a little bit tired and emotional.

He is definately worried about what the tumor means for him. He asked me what would happen if they didn't do chemo and he also out of the blue started asking questions about what people look like in heaven. When he went to his babysitter yesterday the first thing he said to her was that he has another tumor.

Tomorrow around noon we will hook him up to fluids to hydrate him for chemo. He has a little backpack he can wear so he can still move around the house with it. Friday he will go to the clinic and then over to the hospital to start chemo.

My sonogram went OK. This little baby is laying facing down on its knees with its head down to knee level. So we could not get a look at its face and we could only see the heart through the back and so not a clear look at its anatomy. All its measurements were right on track and the parts we could see looked good. When I go back (in 4 weeks or whenever we get back from NYC) they wil do another one. We did not find out the sex even though with its bottom in the air it would have been really easy. Makes me wonder if it is a girl if we didn't even see anything accidentally. It was really fun to see the baby and it was pretty sweet laying like that. Julia slept like that for a few years and we still occassionally find her asleep on her knees with her bottom in the air....very cute.

I will most likely update again on Friday.

Monday, June 27, 2005

2005-06-27T07:57:00.000-07:00

Monday, June 27, 2005 7:50 AM CDT

Update Tuesday, June 28, 2005

Nathan's port surgery is scheduled for 7:30 tomorrow morning. He should be home by early afternoon.

*******************************************

Monday, June 27, 2005 6:23 PM CDT

Ok - well we have a plan in place.

Tomorrow Nathan will meet with the surgeon here and town and Wednesday morning he will have a port placed. A port goes under his skin and then is accessed by a special needle when they need to use it. This needle can stay in for several days. When not in use he can swim and bathe and play as usual. We felt this was a better option for Nathan than having a broviak. He may still need a broviak later if his disease progresses. The surgery is out-patient and he will come home afterwards.

Friday morning he will go into the hospital and start chemo. He will have chemo for four days. For those interrested he will be having Vincrsitine,high-dose Cytoxan, and Topotecan. He is only doing it in the hospital because otherwise he would not be able to start chemo until Tuesday in the clinic and we did not want to wait that long to begin.

This is strong chemo and he will lose his hair and his blood counts will bottom out. We expect he will need blood and platelet transfusions and he will be neutropenic (no/low white blood cells) for several days.

When his counts recover from chemo we will travel to New York and he will have surgery. I would imagine they will do some scans preceding surgery. They will do intra-operative radiation therapy during his operation where they can directly radiate the area.

At this time I do not know whether or not they will take his kidney out. I imagine they will not make that decision until we are in New York.

What happens after surgery depends on many factors and so after surgery we wil reevaluate his disease status and go from there. With relapsed neuroblastoma there is no standard plan to follow. Decisions are made and changed on a daily basis.

We have told Nathan. He took it really well. He wanted to know why the tumor grew again and he had some questions about the port. He then asked to get back to watching Scooby Doo and I am sure he is mulling it over with more questions to come. In fact - as I write this I hear him asking Luke more about how the tumor grew. So - we will just try to answer his questions as they come. We hope there will not be too many that we will have to answer by telling him we don't know - because that stresses him out - but as I just wrote - there is alot we won't know. Julia was concerned about who was going to take care of her and we reassured her that when possible she would have either her mommy or daddy home with her.

So - we are ready to start the battle. We feel very confident in the doctors' decisions and we know we have a good team of doctors in place.

********************************************
We have actually had a good weekend. We knew that there was nothing to be done until today and so we just had a normal weekend. Friday night Luke and I had already planned to get a babysitter and go to see Star Wars and we decided that we should not change those plans. Though I certainly was thinking of things during the movie it was a good diversion.

We did errands and church and just had a normal good weekend.

Ok - here is the very preliminary scoop. I just got an email from the doctor in New York saying they recommend one round of chemo and then surgery. He said he sent the details to Nathan's local oncologist. I will call him this morning and get him to check his email and then find out the details. I am assuming we can do the chemo here at home.

I will update this later with more details when I get them.

Friday, June 24, 2005

2005-06-24T07:51:00.000-07:00

Friday, June 24, 2005 1:54 PM CDT

Well - we got bad news today. Nathan has relapsed with a 2x2x3 cm tumor at the site of his original tumor (on his right kidney). The good news is that his bone marrow is clean and his MIBG scan shows no other cancer.

We are not sure what the next step is. His local oncologist thought that surgery would be the first step. We have a call into his doctor in New York to see what he thinks we should do. We hope to travel to New York very soon and get moving on treatment.

We have not told Nathan yet and we will not tell him until we have a plan of action.

Keep those prayers coming.

(added 1/10/11..the pictures that follow were taken by Tammy, who so graciously offered to take Nathan and Julia for the afternoon after we got the bad news to let us digest it and the kids have some fun)

Thursday, June 23, 2005

2005-06-23T07:51:00.000-07:00

Thursday, June 23, 2005 3:36 PM CDT

Scans are done. We got the preliminary bone marrow results which came back negative (good). His MIBG scan had a spot light up. The radiologist came and looked and said it is in the same place he has always had some "uptake". She was going to compare the intensity to the last scan. He also had a cat scan and so if there is something there - I guess they will see it. I am trying not to worry about it too much.

Poor Nathan threw up during the cat scan. They said it was because he had food in his stomach. Well - he hadn't eaten in two hours but he had to eat a meal in between the two scans so I don't know what they expect us to do.

We will update when we get more results. I don't expect any until tomorrow afternoon at the earliest and more likely Monday afternoon.

Tuesday, June 21, 2005

2005-06-21T07:50:00.000-07:00

Tuesday, June 21, 2005 7:11 AM CDT

Good morning.

Scan week begins today. Nathan will have a bone marrow aspiration and biopsy at 11:30. Tomorrow he has an MIBG injection and Thursday he has an MIBG scan and CAT scan. Hopefully they will not have to do the additional MIBG scan Friday morning. If he has too much of the radioactive isotope during his first scan they have to rescan. We have found that a little laxative helps prevent this from happening.

I have found wildly differing opinions about me being around Nathan while he is "radioactive" but have been comfortable with the explainations that say it OK. It has a very short half-life and I really just need to stay away from his bodily fluids.

Scan time is always stressful. Nathan is getting old enough to understand why we are doing the scans. Yesterday I told he might be having the bone marrows today (we didn't know for sure until 3:00 - isn't that lovely?). Later he started getting stressed out about not knowing and was saying "Mommy, but they have to do my back bandages tomorrow!". It was really sad to see him worry. Back bandages are what he calls the bone marrows since he doesn't remember anything - just comes out of there with bandages on him back. Recently he has had me explain to him what exactly they are doing to him. I have had to delicately explain that they stick a large needle into his bones!

I wanted to write about his birthday since I haven't gotten around to that yet. He had a John Deere theme that he had picked out from a catalog. I went to the grocery store with cake toppers in hand and they made a really wonderful cake with a farm scene on it. He was very pleased with it. His party was at a place that has a big room full of inflatable jumping things and slides. He and his friends had a blast jumping around. After jumping we retired to the party room and had cake and presents. All in all - it was the party he had wanted and he was very pleased. Afterwards we went out to dinner with my brother and his family.

Nathan has been telling everyone since then, "I'm Five now!".

We bought little bikes for Nathan and Julia. Julia seems pretty much unable to learn. Nathan is doing well - but he doesn't like when things are hard for him. He gives up really easily. So it is a bit of a challenge.

That about sums up what we have been up to. Please send all your prayers and positive thoughts our way for CLEAN results while we test this week. Nathan's friend Joshua, in Kansas, is also testing and scanning this week so please send some his way too.

Sunday, June 19, 2005

2005-06-19T07:48:00.000-07:00

Sunday, June 19, 2005 12:49 AM CDT

Happy Father's Day to all the dads!!!

I want to take the time today do tell you all what a wonderful father Luke is.

Since I am the one who writes this journal, you don't hear very much about Luke and all that he does for his family.

Luke is a very loving father. He constantly tells the kids how much he loves them and gives them lots of hugs and kisses. When they cry out for a parent it is equally as often "Daddy" as it is "Mommy". He is fully involved as a dad and caregiver. He and Julia have a special bond from the times they spent together while Nathan and I were in New York. She adores her daddy and I love seeing their special relationship.

Part of the reason Luke is such a wonderful father is what a wonderful husband he is to me. Our children see that he is loving,considerate and helpful towards me and that is a wonderful model for them.

Luke is also an excellent provider for our family. It has been extremely difficult and stressful for him to continue to work when he knows his child is sick and in pain and I am overwhelmed with it all. For him to not be able to provide care during these times has been very hard on him. His being able to stick through and provide for our family these last few years is a big accomplishment and I don't think he realizes just how proud I am of him.

I could not think of one way that Luke could be a better father. I am so lucky that he is the father of my children.

Wednesday, June 15, 2005

2005-06-15T16:47:00.000-07:00

Wednesday, June 15, 2005 3:26 PM CDT

Well - we are home. The kids had a wonderful time but were glad to be home. We are all on Eastern time and we all awake at 5:00 am this morning.

I will put some pictures on the photo album page.

We are already busy. Nathan and Julia are at the sitters today. I had an OB appointment this morning and have been running around getting everything ready for his birthday party tomorrow. Tonight I will go to choir practice and so I am getting a sitter for Nathan and Julia. Luke is out of town until late Friday night.

My OB appointment was fine. Everything is as it should be. I can now feel the baby moving around. I have an ultrasound in two weeks - HOWEVER - Luke and I are in that minority who enjoy NOT knowing the baby's gender - so we will not be finding out if it is a boy or a girl until he or she is born.

I have no word on when Nathan's bone marrows are yet. I hope to know for sure in the next few days.

I can't believe Nathan will be FIVE tomorrow. On the airplane home I had Julia in the bathroom and the stewardess talked to Nathan and found out his birthday was coming up. When the plane was landing the pilot announced to everyone that his birthday was on Thursday and everyone clapped for him. He was very pleased. I couldn't help thinking to myself what a miracle it is that he is turning five and what an accomplishment it is for him to have gotten through all he has and he deserved the applause! I am grateful beyond words that he is turning five tomorrow and doing so in good health. On his third birthday he had chemo. On his fourth birthday he had antibodies. On his fifth birthday he will be having a party with his friends - bouncing and running around. What a blessing!

Thanks everyone for all your birthday greetings. I will be showing and reading them all to Nathan.

Saturday, June 11, 2005

2005-06-11T16:46:00.000-07:00

Saturday, June 11, 2005 3:21 PM CDT

We are having a fun time in Hilton Head. Nathan particularily loves jumping in the waves.

Nathan's scans are set for Jun 22 and 23. His bone marrow aspirations still need to be scheduled but will hopefulyl be on the 22nd.

We had lunch at the Salty Dog Cafe yesterday. Click
here to see us on the webcam. You may need to click on show picture and then pick 12:42 and click on that to see the picture.

I will update again when we get home.

Monday, June 6, 2005

2005-06-06T16:46:00.000-07:00

Monday, June 6, 2005 5:49 AM CDT

Quick journal to say that the kids and I are off to Hilton Head Island this morning to visit my parents.

Nathan saw his oncologist and we decided he will have scans the week of June 20. I will post more details when we have them.

Hope everyone's summer is getting off to a good start!

Monday, May 30, 2005

2005-05-30T16:45:00.000-07:00

Monday, May 30, 2005 9:21 AM CDT

Hello - sorry it has been so long since I updated.

We went to Arizona last week and had a great time. The kids are so good on long car rides that the drive was no big deal at all. The drive was about 12 hours plus stops. We picked up Luke's brother, Josh, halfway there - in Albuquerque and proceeded to the Phoenix area. We spent the weekend hanging out with good friends and their kids. All the kids LOVED the pool and since it was 115 outside - that was a good thing! Nathan and Julia because very comfortable in the water and were swimming around the pool in their "floaties".

On Monday morning we left Phoenix and drove to Tuscon to visit my aunt and uncle. Luke caught a flight home that evening and the kids and I left on Wednesday morning. Nathan and Julia loved learning about the plants and cacti in the desert. My aunt took them on several walks around her property looking at all the plant and wildlife.

We drove home in two days, stopping in Albuquerque for the night. Once again, Nathan and Julia were very good on the ride.

So - we've been home since Thursday. The trip really tired me out. I had very bad allergies to something in Phoenix and am recovering from that. I am still somewhat nauseous and have an almost constant headache. So - that is my excuse for not updating!

Today, Luke is working despite the holiday and the kids and I will go to a friend's house later for a cookout.

Tomorrow, Nathan has appointments at the ear doctor and the oncologist. These are routine checkups. At the oncologist he will just have a physical exam and we will discuss the timing of the next round of scans.

The kids and I are off to Hilton Head Island next Monday to visit my parents. I am not exactly ready to go on another trip already but I am looking forward to being there!

When we get back we will prepare for Nathan's birthday on the 16th!

So - that's our update. I don't expect to learn anything interesting at the doctor appointments tomorrow, but I will update if I do.

Monday, May 16, 2005

2005-05-16T16:45:00.000-07:00

Monday, May 16, 2005 8:56 AM CDT

We have had another good week. It was filled with fairly normal stuff. Nathan had preschool. They had several playdates. I realize I fail to mention what Luke is up to most times. The answer is usually - work as usual. This past week he has been working nonstop and will also be doing some travelling in the next few weeks. I had my 12 week OB appointment on Tuesday. The doctor was having a little trouble getting the heartbeat on the doppler and so took me across the hall for a quick ultrasound. It was fun to see how much the baby had changed from the blob it was at 8 weeks. Anyone interrested in seeing it can look here. It is hard to see for those not used to looking at ultrasounds - but the baby's face is ont he left side - its hand and foot are sticking up.

Nathan's last day of preschool is Wednesday. They are having an ice cream social on the last day. I can't believe it is almost over and Kindergarten is next for him.

I think I may take him into the oncologist's for a check-up at the end of May. We need to figure out when his next scans will be. With our busy summer schedule they will either have to be the 3rd week fo June or the first week of August. We don't really want to even do them - but I suppose we should. We are enjoying this medical free time and it has been nice to be able go along for awhile with a normal life. The thought of finding a relapse terrifies me and it would be even more heartbreaking for it to happen right before he is about to get to go to Kindergarten. However - the prevailing theory is that it is better to find a relapse early so I guess we need to keep scanning.

We are off to Arizona soon. The kids and I are going to take a side trip to visit with my aunt and uncle in Tuscon after we leave Phoenix. It means a long drive home for me (Luke will fly home) but I have decided it is well worth it to make the visit.

Well - that is the update around here. Hope you all are doing well.

Monday, May 9, 2005

2005-05-09T16:44:00.000-07:00

Monday, May 9, 2005 9:46 AM CDT

Hello - I hope all you moms out there had a happy Mother's Day.

Remember that slight cold Nathan had? Well - he is over it, but I got it and it was bad for me and I spent the last week sick. So we didn't do much. I managed to do the bare minumum of running the kids around. Unfortunately I have a cough and that doesn't mix well with morning sickness. So - I am afraid I don't have much to write about for last week.

I did have a good Mother's Day. I felt well enough to go to church and sing. After church we went out to lunch. We just relaxed the rest of the day and had dinner and an ice cream cake for dessert. It occurred to me that I have now had more Mother's Day since Nathan's diagnosis than before. Wow! I am so thankful for every day with my children and especially thankful that Nathan is still here with us - seemingly healthy and happy.

Nathan did get his immunizations last week. He did really well - I am so proud of the way he deals with such things. He is now at the point where we will draw blood to check if his immunizations have taken. After that I think he starts getting some different ones. He has been getting 4 at a time.

I go to the doctor tomorrow for my 12 week OB visit. I can't belive the first trimester is almost over. I am now in the unfortunate stage where none of my clothes fit and maternity clothes are too big - so if you see me - please ignore how horribly I am dressed!

The kids, especially Julia, have been telling us here and there what kinds of things we will need to have for a new baby It is very sweet. What we do need to do soon - is get our basement turned into two rooms instead of one big room so that Luke can have is office down there and we can also have a playroom too.

Nathan only has 7 days of preschool left! I goes his usual 4 days this week and then next Wednesday is his last day. I feel sad for him that it is ending - he realy loves it. I really like his teachers and his classmates moms - but the nice thing for me is that Julia will be in the morning class next year with the same teacher and 2 siblings of his classmates.

After preschool ends we are off to Phoenix to celebrate a friend's (Jim Barton) law school graduation and to hang out with several friends for a long weekend. We are renting a big house with a pool and it should be a really fun time.

Thanks for checking in!

Monday, May 2, 2005

2005-05-02T15:31:00.000-07:00

Monday, May 2, 2005 6:45 PM CDT

Hello -

There is not too much going on here - which is a good thing! We have been having atrocious weather - cold, snowy and cloudy, and have been mostly staying inside.

On the medical front - Nathan has some immunizations on Wednesday. I don't know when we will do scans next. I also don't really care to know right now - so it is fine with me!

Nathan has a little cold, but other than that seems really good. Julia seems to have bounced back from everything and is doing well too. Nathan went to a birthday party on Saturday at a place with large inflatable jumping things. I was happy to find that his hip did not bother him afterwards. So - hopefully that is on the mend.

We have some happy news to share. We are expecting a new baby in November! I am due on Thanksgiving Day. We just told Nathan and Julia about it this weekend and Nathan seemed interrested and Julia was very excited and happy. Nathan immediately started asking techinal questions like "what does the baby do while you are eating dinner?". I have been feeling fairly sick the last week or so. Nothing too awful - but I am trying to take it easy when I don't have to be running around doing things. I have had a sonogram and seen the little bean with its beating heard and that was so wonderful to see.

So - that is what is going on with our family right now. I hope all is well with all of you.

Monday, April 25, 2005

2005-04-25T15:30:00.000-07:00

Monday, April 25, 2005 9:39 PM CDT

Nathan had his ortho appointment today and it went well. She definately believes he has more fluid on his hip and said that if he is active it will take 3-4 weeks to heal. The literature I had read about transient synovitis said that is does not recur, but she said that that is outdated and she has found that it does recur - she said she sees it about 3 or 4 times a year. Since the healing time is so long - it makes sense that it was not yet healed when he did all the walking and the fluid built back up.

She spent a lot of time looking over his xrays and MRI with me on her computer. His hips look perfect - she could see no abnormalities. Interestingly she zoomed in on his femur near the growth plate and showed me three distinct lines. She said this happens while a child gets very sick. She said he must have had 3 bouts of fever and neutropenia - which is true. She was very into all the anatomy on the MRI and it was very interesting looking at it all. She is the doctor who diagnosed Nathan with neuroblastoma and we had always thought she did an outstanding job, and I thought so again today. We are now on her nurse's list of people to get right in and accommodate if we need anything. She is very sympathetic to the fear that leg pain in Nathan causes and will see him on a moment's notice anytime we want. She said if his hip isn't healing like we feel it should she might get him into some pool therapy for a week or so to see if it helps.

I took Julia for her blood draw this afternoon. She just screamed in terror. Of course, they had to poke her twice....UGH! She was pretty traumatized, but I think she will get over it once again. She and Nathan have been giving her ponies IVs lately. In fact, the other day they had to be poked twice because the first time didn't work. Both of them can identify with that!

I will still try to post some pictures soon. It is a matter of locating the cable. The chaos in our lives the past month has really taken a toll on the house and it is an absolute wreck. I don't have the energy to do much about it at the moment either. On the bright side - Nathan and Julia have been having lots of fun playing with the open suitcase on the family room floor. They each get in half and Julia actually straps herself into her half and they pretend it is a car. The two of them just play and play. They really are the perfect playmates. Most of their playing is role-playing and they really get into it. It is such a wonderful thing.

After a few weeks without, we went back to church yesterday. Nathan and Julia really love Sunday school. Julia told us some bible story that we don't know (not that hard to do between the two of us). It is really cute. There have been lots of discussions lately about God, Jesus, Heaven and death. I hope I am giving the right answers! Nathan is such a critical thinker. The other day he said, "if babies come from Mommy's tummies, then where did the very first baby come from?". I explained the two schools of thought on that the best I could. Then we had the age old question from Julia about where was heaven and couldn't we just drive our car to get there?

Well - I have actually rambled a little - not easy for me to do. Thanks for checking in.

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Update Wednesday April 27, 2005 4:03 MDT

I just got back from Julia's appointment. Her echo and EKG are normal and platelets are normal and SED rate is almost back to normal (down to 22 from 103). So - it looks like she will not suffer any side effects from this illness and we can move on. We are very relieved. She is happy she can now run around again. She will have a follow-up echo in September.

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Friday, April 22, 2005

2005-04-22T15:28:00.000-07:00

Friday, April 22, 2005 4:21 PM CDT

Well - I guess I will give all the details - it might get long though.

Friday morning at 7:30 a limo picked us up at the house and drove us to the airport in Denver. The kids were very excited to be in a limo. I was a little less happy because due to their car seats I had to ride backwards in the limo - which is not great for me with motion. Check in was a breeze because they booked us on Frontier airlines and Nathan and I both achieved frequent flyer status with them last year going back and forth to New York so we got to go the the front of the check-in line. They gave us 3 seats together and 1 apart. My wonderful husband offered to sit with the kids. They were amazingly good. They didn't make a peep. Watched TV, ate, colored and played with play-doh.

We arrived in Orlando without a hitch and were met by a representative from Give Kids the World. They took us to car rental and we signed a piece of paper and were on our way. We went to Give Kids the World (more on what that is in a moment) and checked in. We were all set to stay at the Animal Kingdom Lodge since GKTW (abbreviated) was booked up. Well- when we arrived they had a cancelation and gave us the choice of staying there. After some thought we took them up on and and are so glad we did. Give Kids the World is a resort for families going to Orlando for a wish trip. They have 96 2 bedroom villas for the families to stay in. They also have free meals, free ice cream parlor and lots of activities. There is a carousel, train, 2 pools, and multiple game rooms. It was perfect for Nathan and Julia. So, after we got there we partook of the activities and I went to orientation and got our tickets.

Saturday we went to Sea World and met our friends, Max and Mindy and their kids, Maxx and Miles there. They recently moved to Florida from Colorado Springs and so it was fun to get to hang out with them. We brought a stroller for Julia but let Nathan walk the whole time (more on THAT later). We saw two shows and played in a huge rope climbing area. They loved the shows and we got great seats due to Nathan's Give Kids the World button. We left around 3:00 and went back to GKTW. My parents arrived in town and came over and the kids got to show them all the amenities before we all went out for dinner.

Saturday night Nathan started to complain that his leg hurt. By Sunday morning he was in extreme pain and couldn't walk. It ws the same hip that he had the transient symovitis in. We were set to go to the Magic Kingdom, so with lots of tylenol and ibuprofen we went. We got a special card with a stamp that allowed us to use Nathan's stroller as if it were a wheelchair. This allowed us to take the stroller right up to the ride and transfer him. It was somewhat painful for him to be moved in and out of his stroller - but he beared with it in order to go on the rides. He actually got to ride on the "It's a Small World" ride in his stroller on a special boat. We rode on most every ride they have there. We didn't have to wait in any lines so we had plenty of time. Nathan adored the Thunder Mountain Railway and Goofy roller coasters. He and Julia both agreed that Dumbo and the Magic Carpet rides were the most fun also. There was much snacking and riding and then we parted ways with my parents. They were going to stay at the park and we went to dinner (Steak and Shake - my favorite!) and then to BED!

Monday we went to the Animal Kingdom for the morning. We enjoyed seeing the animals but didn't want to spend the whole day there. There is a ride that simulates a safari and there was a scenario about poachers. IT turns out Nathan was listening very closely and he was actually quite concerned about the "hunters" and it was very difficult to persuade him that it was all pretend. In the afternoon we went back to GKTW and went swimming. They had a BLAST and it was nice to take a break from the parks. Nathan was starting to walk on his leg a little by then. Sunday night we went to downtown Disney and had dinner at the Rainforest Cafe. Nathan and Julia loved the setting there and the fake thunderstorm and animatronics. It was a very nice dinner and once again we went home and went to bed!

Tuesday we went back to the Magic Kingdom. Nathan was walking much better and we had to force him to stay in the stroller to rest his hip. We went on all the favorite rides again and spent the whole day there once again. It was really nice to revisit what we had just done and I think the kids enjoyed the second day even more than the first. We went over to the Polynesian Hotel for dinner with thoughts of returning to the Magic Kingdom for fireworks, but we were all just way too tired for that and went back and went to bed.

Wednesday was our last day and we had a leisurely morning at GKTW while the kids played with all the activities there. We went out to lunch (Steak and Shake again!) and back to GKTW for ice cream and then back to the airport. Nathan was very happy to find out they would be showing the Incredibles on the plane and he sat and watch that without a word. Julia watched TV and was also very good and quiet. All was fine until about 45 minutes from landing when we were told that the Denver airport was closed due to weather. We circled for a while and then headed to denver. When we were almost there we were told it was closed again and had to land in Colorado Springs. It was a very bumpy ride down and I actually got sick. We were then told we would sit on the airplane in Colorado Springs until the Denver airport opened. No one was allowed to get off. Fortunately, Nathan and Julia mostly slept through all of this. So - we sat there for a few more hours and finally got to go to Denver. We caught our limo and got home around 1:00 am.

We spent Thursday recovering from all of this. Today it came to my attention that Nathan's leg was still bothering him somewhat so I took him to see the pediatrician. She talked to the oncologist and they decided to send him to an orthopedist on Monday. I am not really concerned about this being cancer considering what we just went through - but it does appear his hip has not healed and we need to make sure we know what is going on. We do like the orthopedist. She is the one who pushed for all the tests and diagnosed Nathan so quickly two years ago. Hopefully we will figure this out and move on. I will talk to the oncologist later today to hear his thoughts.

Meanwhile - Julia seems to be doing fine. She will have bloodwork done and an appointment with the cardiologist on Wednesday and we are crossing our fingers that her echo is normal and her labs are trending down to normal.

I have to admit - I am SO tired of all things medical. I am really hoping for resolution with both kids for at least a few weeks.

So - that's about it.....I will update later with more medical happenings when we know anything and I will post some pictures ~~soon too~~.

Thursday, April 21, 2005

2005-04-21T15:28:00.000-07:00

Thursday, April 21, 2005 12:47 AM CDT

We are home. Luke and I are very tired, the kids don't seem to be tired at all, and we all had a good time. I will update with more detail when I get the energy!

Wednesday, April 13, 2005

2005-04-13T15:27:00.000-07:00

Wednesday, April 13, 2005 6:59 PM CDT

Julia saw the cardiologist. They now say she definitely has Kawasaki's disease. Her platelets were 964,000 which is even higher than when she was treated (normal is around 300,000). Her sed rate (measures inflammation) is still extremely high at 103 (normal from 1 - 10). Her echo showed some changes in her coronary arteries but no coronary artery aneurisms (which is good). These slight changes are something they usually see at diagnosis and they should go away in a week or so. Her doctor said he personally has never seen a child develop the aneurisms more than two days after treatment if they don't have them already - so he is pretty confidant that she won't develop any.

He did caution us that she really should not be running around or exerting herself in any manner. Her heart is inflamed and she could potentially cause heart damage if she is too active. That said - he encouraged us to go ahead with our trip so long as she rides in a stroller and we keep her from running around. He said we probably need to go and he is right.

I have had to keep her from running some today and I hate it. I love watching my kids run around. When Nathan was sick and didn't run for a year I realized how wonderful it is. I hate to tell her not to. I am afraid she will lose that impulse.

So - that's the word.

Please pray for no more complications for Julia.

Susan

I can't believe that both of our children have now developed rare childhood illnesses.

Monday, April 11, 2005

2005-04-11T15:26:00.000-07:00

Monday, April 11, 2005 7:53 PM CDT

Hi - sorry I didn't update sooner. Julia is doing just fine. She has had no more nosebleeds and other than being a little more tired than usual is almost back to normal. She is much better about taking her aspirin. She has to have it every six hours which mean she has to be woken up for it and then also take it right when she gets up. Tomorrow she will have blood drawn and Wednesday morning she will see the cardiologist. She is still at risk for developing coronary artery anneurisms and so I am guessing they will do a follow-up ultrasound.

Nathan is doing so well. About 6 weeks ago he got sick and then he developed the transient synovitis and during that period of time - he really had a lack of energy. Well - he has totally rebounded from all that and had load of energy and looks so well. It is wonderful to see him like that.

We had an actual blizzard yesterday. Today the kids went out to play and had lots of fun in the giant drifts. In true Colorado fashion - it will be in the mid-sixties tomorrow and so the foot of snow or so will all be gone very soon.

After Julia's Dr. visit on Wednesday we should know if we can go to Florida or not. Keep your fingers crossed for us - the kids are so excited about going (as are Luke and I) and we could really use some good news and fun.

Thanks for all the support and emails. I haven't been able to get back to all of you who emailed but I so appreciated it!

As far as Nathan and doctors - he is due for more immunizations and a check up with the hearing aide doctor. Luke and I are undecided if we will have him do an MIBG scan and CT scan soon, or if we will elect to wait 3 months and do the whole shebang. We are very reluctant to have more scans and tests right now.

Well - that's about it - I will update on Thursday about Julia's visit.
So - I will update again

Friday, April 8, 2005

2005-04-08T15:25:00.000-07:00

Friday, April 8, 2005 9:02 AM CDT

Julia completed her IVIG infusion yesterday. It should have been complete about 2:00 am the night they were in the hospital , but someone messed up and didn't notice that the pump switched to IV fluids. They didn't catch it until the next morning so she had to stay longer yesterday while they gave her the rest of her infusion. She felt good most of the day and then her neck started hurting late in the afternoon.

She is on high doses of aspirin every 6 hours. It has been a struggle to make her take it. Even worse, her nose is bleeding. It bled some in the night and stopped. It has been bleeding for 1 and a half hours this morning with no signs of stopping. I am waiting to call the doctor when the office opens.

At least we are home....

I'll update again later.

***************************************

1:50 pm MDT

Julia's doctor managed to get her nosebleed to stop and so far it hasn't come back. I am sure it will at some point, but I feel more comfortable with being able to stop the next one. She is currently feeling well and she and Nathan and playing very nicely together. It is clear they missed playing together. They are wonderful playmates.

As for Luke and I - boy we are in extremely rough shape. I don't think I could adequately describe it, but we are definitely on the brink of emotional and physical collapse. We really need at least a week of no drama around here to even begin to recover.

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Thursday, July 7, 2005

2005-04-07T15:41:00.000-07:00

Thursday, July 7, 2005 8:44 PM CDT

Well - the ugly stuff has started.

After running around out and about this morning Nathan had his appointment and his counts are already low. Everyone was surprised. The doctor said his bone marrow definately remembers the chemo. This is not really great because it means that Nathan will not tolerate high doses of chemo very well. It will likely take him a while for his counts to come up. He is starting to get mucousitis (sores)and we are hoping it doesn't get so bad that he can't eat. It is also affecting his bottom. While we were at the clinic he got a very bad nosebleed. It was just gushing and it was way back in his nose where we couldn't stop it and where it was just pouring blood in his mouth. It lasted for a long time and the poor thing was just spitting blood and choking. They gave him some medicine to help his blood clot and some anti-nausea medicine as well. He will get platlets tomorrow even though he isn't quite at the level to get them - he will be by the end of the weekend and with the nosebleeds he just has to have them. He got another long (30 minute) nosebleed when we got home. The poor thing is just exhausted. It was really hard to see him in such bad shape. It is bringing it all back. Unfortunately he is just going to feel even worse for the next week or more. If he gets a fever he will be admitted. At this point I have to almost assume that will happen - I hope not though.

We got word that the preliminary date for his surgery is August 1. He will have a scan here on the 24th and it will be sent to NY. I am sure that date will change - but at least we have a general time frame. I was kind of hoping it would be a little sooner. Nathan is due to start Kindergarten on August 15 and I was really hoping he would make the first day. He still could - but it is just not as certain now.

The port access went really well. He was upset about it before it happened - but when it finally did he didn't even flinch. I don't think he felt a thing. So - that is a big relief! They left him accessed since he will get platelets tomorrow. The platelets don't take very long to infuse so he should only have to be there for an hour to an hour and a half.

I have a feeling there was more I was going to write but I can't really think anymore. I am just really hoping he can avoid a nosebleed tonight.

Wednesday, April 6, 2005

2005-04-06T15:24:00.000-07:00

Wednesday, April 6, 2005 3:49 PM CDT

Luke here. Susan would update, but she is in the hospital with Julia. Yes, she was readmitted this morning and is being treated for Kawasaki Disease. She went and got blood work and then was seen by the cardiologist. He decided to admit and treat, but told Susan he didn't think she had KD, but that he couldn't rule it out and with the potential side effects to the heart if it goes untreated, he basically has to treat if cases get to him. So, no one really thought she had it, but there was enough uncertainty to treat. The pediatrician at the hospital that was completely convinced she didn't have it, told Susan that she just might actually have it when her blood work came back early this afternoon. Her platelets and sed rate (non specific inflammation indicator) were continuing to climb. Her platelets are getting especially high, which is a major piece to diagnosing KD.

So, she will receive a 12 hour infusion of gamma globulin (purified antibodies) and high doses of aspirin to reduce risk of the heart problems. Susan is with her now at the hospital. I'll be taking Nathan down after work and then after we spend some time together, Susan and Nathan will come home and I'll have the night and morning shift. She *should* come home tomorrow and apparently if this is KD, or even just a simple infection, the IG infusion should have her feeling much better very shortly.

Ugh.

Tuesday, April 5, 2005

2005-04-05T15:23:00.000-07:00

Tuesday, April 5, 2005 6:00 PM CDT

We took Julia to her pediatrician's office today. She still has a fever and sore neck. Some of her labs came back abnormal. Tomorrow she will have more labs and see a pediatric cardiologist and hopefully he will be able to give us more information.

Hopefully, this is just a virus follwed by an infection. They gave her a antibiotic shot today.

Nathan got to go to preschool today - so he is happy. He is off to the babysitter's tomorrow so may or may not get to go.

I will update tomorrow.

Monday, April 4, 2005

2005-04-04T15:23:00.000-07:00

Monday, April 4, 2005 8:11 PM CDT

Well - we've been to the hospital - but this time with Julia. She has had a high fever for 5 days, very red eyes, various rashes, and a sore neck. I took her to her pedaitrician on Saturday and she said Julia had a virus. He neck started hurting badly yesterday afternoon and so I took her to urgent care. The doctor there was concerned it was Kawasaki's disease. We spent the rest of the night in the ER, where the doctor was also concerned. They admitted her and the doctor in the peds ward was convinced it was just a virus and sent us home. So - we are in a kind of bad situation where we are not sure what is wrong with her. If it is Kawasaki's disease, early treatment is important to prevent life-threatening heart problems. So - we are quite uneasy about this. She still has a fever and a sore neck but her other symptoms are subsiding. She will have some blood work done tomorrow and then go see her pediatrician.

I hope things become clearer for us between now and then.

Nathan is just fine - if it is a virus - he and the rest of us don't have it. It was so strange doing the hospital thing with Julia instead of Nathan.

I'll keep you updated.