Tuesday, September 30, 2003

Tuesday, September 30, 2003 8:19 AM CDT

Susan here..

Nathan's day yesterday was OK. His pain is mostly under control. He is sleeping alot. He still has a fever around 103 that comes down a little with tylenol. The doctors think it might be a yeast infection in his mouth. All in all none of this is really unexpected and he really is doing pretty well.

One of the blood tests that they perform 3 times a week showed a higher level of immature red blood cells than they expected. It could just be a "blip" or it could be that his counts are already starting to come up. They will repeat the test on Thursday.

Luke here now. It is Noon. Susan is getting some time away and a volunteer is playing with Nathan while I grab some food and do this. The key word in that last sentence was "play". Nathan really is having a better day. The pain seems better and he has been awake since about 8:15am. He has played and watched tv and was really good for the docs. His primary oncologist from the Springs was up to round this morning and it really cheered Nathan up to see him. He is definitely doing better and we hope that is a trend. His white counts were up slightly today, although he needed platelets and red blood this morning. His platelets were a little low last night and we were thinking he should have been transfused in the evening. We came in this morning to find blood stains on the floor in Nathan's room from nose bleeds. The docs won't say they think his white counts are on a "trend", but we sure hope so. The sooner those come up the sooner he feels better and his pain will subside.

Gotta go. This is the first time I've left Nathan with a volunteer (I've left him with his nurses). I think it is probably going well as he was excited to show Mike his construction toys.

Monday, September 29, 2003

Monday, September 29, 2003 8:02 AM CDT

Susan here...

Nathan's pain was better yesterday. He also had a long stretch of awake time. His fever was higher yesterday but reduced somewhat with Tylenol. He was compaining about stomach pain which is most likely because his sores are going all the way through his digestive track. He drank a few sips of ice water but eating and drinking is just too painful for him.

I came back up to Denver around 2:30 yesterday. I was required to wear gloves and a mask but I got to see Nathan. Luke is exhausted from his long weekend at the hospital. So far he is not sick though. We went out to dinner after we left the hospital last night and had a nice dinner to celebrate my birthday.

Saturday, September 27, 2003

Saturday, September 27, 2003 10:24 PM CDT

Luke here...Susan is feeling better, but we didn't want her around Nathan today. She drove down to the Springs this morning to see Julia and her mom and to be there for the transition to our friend Lisa taking care of Julia. Hopefully she can see and spend some time with Nate tomorrow. Where to start. Nathan had another pretty good day, considering how bad he feels. He was in obvious pain this morning. His cheeks and throat are swollen and he was drooling out his saliva instead of swallowing. We got some more morphine in him and the doctors decided to start a continuous drip. It was easily the right thing to do. He opened his mouth for the doctor this morning and she said he didn't really have distinct ulcers in his mouth, but that the entire lining was inflamed, swollen, and in some places peeling away. He has drooled a little blood. She also said that it is likely that the lining of his entire digestive track from mouth to bottom is in the same state. When he swallows medicines it obviously causes him pain in his mouth, throat, and stomach. As the drip got started he slowly started to feel better. Mostly he slept today. I think the sleep is his reaction to the pain and stress and the morphine helped. He was awake for about 2 hours this morning and then for an hour or so in the afternoon, and then he slept until about 6:15pm when I woke him up to give him a bath, do his meds, line care, mouth care, and get him settled down. He fought through the sponge bath but then settled down. His meds hurt him, so we gave him a little extra morphine. He was good for his line and mouth care and when I finished I told him that there would be no more "mouth" meds or mouth care and he smiled at me. It was great to see him smile. He was then in the best mood he has been in for about three days and quite wide awake and alert. We watched some movies (He is on a Monsters, Inc. kick). I left him wide awake at 8:30pm. He was lying back with his hands behind his head watching tv. He was sad that I went, but good about it. I felt extremely guilty leaving him when he felt better than he had in days, but I am beat and needed some food. I'll call the nurses soon to see if he settled down.

His night nurse was his nurse last night too. She said that he looked more comfortable now than he did at any point last night even when he was sleeping. I'm happy to be on top of his pain now. There shall be nothing entering his mouth tomorrow without a good extra shot of morphine first. Today was day 2. The docs say that days 2 to 7 are probably the worst. Hopefully we can stay on top of this pain until his cells find his marrow and his counts come up. If you are looking for specific things to send positive thoughts or prayers about then they are (1) That his transplanted cells quickly find there way to his bone marrow space and start producing beautiful, functioning, and cancer free cells and (2) That while we are waiting for his cells to do their work that he can be fairly comfortable and kept out of horrible pain.

Hmmm....Have I covered it all? I'm sure I'm missing something. Based on tonight, I'm optimistic for tomorrow. I'm hoping that he can have a few more smiles and hopefully a few more waking moments acting like himself.

Tomorrow is the second normally celebrated day to fall during transplant. Our anniversary was last Saturday. Tomorrow is Susan's birthday. I'm guessing that her feeling well enough to visit Nathan in combination with a relatively pain free day for Nathan would be more than she could ask for.

Transplant is obviously horrible and as I re-read these posts I realize how horrible it all sounds. It is nasty, but Nathan is a real trooper like always and holding up well. We are hanging in too. I can't get too upset about things when I know that this piece of treatment is temporary and so crucial to Nathan's chances long-term survival.

Thanks for getting through this verbose post. A good friend told me that my posts read almost like therapy for myself, and I suppose in some ways they are.

Luke again. About an hour later. When I left Nathan he was wide awake, so I just called his nurse to check in. I guess he watched a couple of videos by himself and when she came in to ask him if he wanted another he said, "No. I think I'm ready to sleep now." and rolled over and went to sleep. She left me by saying, "He is an angel. I just love him." Now I think I can roll over and go to sleep.

Friday, September 26, 2003 – 2nd post

Friday, September 26, 2003 9:30 PM CDT

Luke here...Nathan had a pretty good day considering. Check in on past posts for the history and last night's problems. Today he was himself. He is way tired right now. His counts are bottoming out. He had some immune system this morning, but will have little or none tomorrow. His platelets plummeted today so he'll begin needing transfusions for those tomorrow. His mouth sores are bad. His cheeks are swollen and he isn't really swallowing much. He is drooling a lot and all he had to eat today was a few bites of cereal and half a cup of milk. His oral medicines hurt him. Now saying all of that, it was a much better day than yesterday. He was never hysterical. He slept a lot. I think he feels better when sleeping. I know I like to sleep when I feel shitty and I can't even fathom how bad he must feel. We are also giving him morphine whenever he needs it for the pain, so that knocks him out a little too. When he was awake, he played and watched tv and did normal things, just with a lot less energy. He feels bad, but I feel very positive about the day compared to yesterday.

The real bad news of the day is that Susan is sick with a stomach flu and can't be with Nathan at all. I'm keeping my fingers crossed that I don't get it. She did feel better earlier, but is feeling very ill tonight.

And now for a cute Nathan story. I think everyone could use one of those right about now. Two nights ago after we left Nathan didn't really want to go to sleep. He wasn't fussy, just not sleepy. His nurse came in and found him lying flat on his back on the bed with his vomit bin covering his head while singing "Twinkle, Twinkle Little Star". That is our boy.

Goodnight.

Friday, September 26, 2003

Friday, September 26, 2003 8:03 AM CDT

Susan here...

Well - yesterday went downhill fast after my entry. Nathan was cranky and then just raging for the rest of the day into the night. We finally left at around 9:45. We are also dealing with my missing Julia and trying to figure out if we should bring her up here.

I will add more to the entry later - we have to get to the hospital.

It is later now. Nathan has had a better day. He is in pain but is himself and not raging. He has a low fever and his counts are down. He had a chest xray just as a precaution with the fever.

Luke will have to update more because as of around 11:00 this morning I have the stomach flu. I am feeling a little better now but must stay away from the hospital for at least 24 hours. If I feel up to it I will go home tomorrow to see Julia and turn the reigns over to my friend Lisa.

Thursday, September 25, 2003

Thursday, September 25, 2003 3:00 PM CDT

Susan here...

Well - it has been a rough day. Nathan woke up in pain and very cranky. He is also on steroids that help control his nausea and that makes him cranky too. The nurse did his line care on his catheter and he has been having very red irritated skin around the site from the tape we think. When she removed a piece of tape it took a piece of skin with it. It was very painful. He is now without any kind of bandage to let him heal. Chemo causes fast dividing cells to die and so his skin is not able to heal itself right now. Afterwards he decided he really wanted a banana and there was not one to be found in the hospital so Luke ran to the grocery store to get him one. When he tried to eat it it was very painful and so he was upset about that. Oh and he also got a really strange rash on his forehead that popped out when he started screaming and then slowly went away. No idea what that was about.

They then came to give him his stem cells back. He was screaming in pain at that time and they gave him some morphine and I read to him and he calmed down and went to sleep. There were lots of people there - 2 nurses, 2 student nurses, the oncology fellow and the doctor. It took about 40 minutes to give him the stem cells. His blood pressure jumped during the transfusion and he has had to have 2 does of a medicine to reduce it. they aren't really sure why it went up but they aren't too concerned. He continued to sleep and his nurse was going to stay with him anywyay so Luke and I went and grabbed some lunch. He was awake when we got back and much more chipper. He ate a orange push up ice cream and then sat in the chair and decided to take a nap.

His counts are lower but still not at zero yet. He definately has mouth sore int he back of his mouth and throat - we can't see them though. He also has sore skin on his bottom. He will be getting the morphine ever two hours and eventually continously. He will also be on an antibiotic when his counts drop and he will start on the IV nutrition tonight.

We have some pictures to post but will have to do it tonight back at the apartment. I am at the hospital currently.

So basically - he has his stem cells back - but now comes the hard part where he will be in pain and feeling badly until his counts start to rise again in about 8 to 10 days we hope.

 

Wednesday, September 24, 2003

Wednesday, September 24, 2003 2:34 PM CDT

Susan here..

Nathan is doing pretty well today. He hasn't eaten or drunk anything today and has thrown up once. We pretty much figured he'd stop eating at some point and he isn't upset about it. His counts are down again but not too low yet. He got a blood transfusion yesterday. They transfuse at a relatively high level here (hemoglobin of 10 for those who know) and he was rarely even at 10 during treatment. Last night when he was in the bath Luke and I just kept staring at him because for the first time in 6 or more months he was actually pink! The nurses kept wondering if he was feverish. He looks pretty good non-anemic but we are not used to it. Today his hemoglobin was 13 and he is still very pink!

He has still had no fevers and is doing very well. His stools are starting to get painful and he is about to pop some mouth sores we think. The next day or two he will start feeling bad.

Yesterday I felt pretty crummy and came home early. Today it is Luke's turn to feel crappy but at least we are alternating days.

We haven't seen Julia yet. She has had a cold and so we are planning on my mom bringing her up on Friday. It is hard being away from her for so long. This weekend my mom will leave and my friend Lisa is coming with her daughters to stay and take care of Julia.

So - tomorrow is the big day. It should be very anti-climactic since it is just like a blood transfusion. We will be happy for the stem cell infusion because it is another step to trying to cure Nathan. I actually had a dream where I had the bag of stem cells and dropped it. But anyway - it will be the next week or so that will be the risky time for Nathan and keeping him infection free.

We will update tomorrow and will have some pictures too.

p.s. for any of you in the area...we'd love to see you (if you are healthy!) it would be a great diversion. If you email with the link on this page we will give you our phone number.

 

Tuesday, September 23, 2003

Tuesday, September 23, 2003 3:52 PM CDT

Luke here...Not too much to report. Things are still going well. Nathan finished his chemo yesterday morning. He has had a fair amount of vomitting today, so we are pushing the "tummy medicine" again. He is, as always, handling it well. Now we are just waiting for the chemo to both do its work and get out of his system. We have to wait for the chemo to be gone before giving him his stem cells back so that the cells aren't attacked by chemo. Day 0, when he gets his cells, is Thursday. The doctors are pleased. His counts have stayed pretty good for a good stretch of this and he hasn't had any fevers or major adverse reactions to the high doses of chemo. His counts are still pretty good, but they took a big dive between yesterday and today and they will continue to fall like that. Between the nasaue and falling counts he is obviously not feeling as well, but he is still handing in there. Some of the daily routines and meds are still a little bit of a struggle, but that is to be expected. The great thing (or at least one of them) is that when he throws a fit about something, it is all verbal and while throwing the fit does what he is supposed to do. For example, when he gets his "line care" where they change the bandage and clean the site where his line leaves his chest, he may scream, but he always holds still like he is supposed to.

Susan and I are doing pretty well too. Nathan continues to be fine with us leaving at the end of the day and we usually get to leave at around 8pm. It is good to have a nice apartment to come "home" to.

That is all for now. Hopefully things don't get too interesting in the days to come.

Sunday, September 21, 2003

Sunday, September 21, 2003 10:05 PM CDT

Susan here..

Nathan had a pretty good day. His counts have not dropped yet. He was pretty sad this morning and wanted to go home most of the day. He was also tired most of the day. He took a nap this afternoon and went to bed at 7:00 tonight. He was pretty loving and sweet and played some too. We keep forgetting to bring in the camera to get an updated picture of him. The fluids and a steriod he gets have left him a little puffy.

Luke and I got out late last night to have dinner at a pizza/microbrew place we like to celebrate our 6th anniversary.

We also both spent a good portion of the day today cleaning and doing laundry. The cleaning requirements of the apartment are very strict. I kept thinking to myself that it is some kind of torture to me to have to clean like that. I hate to clean. Luke and I cannot imagine how on earth we will keep 2400 square feet clean if we are breaking our backs keeping a 2 bedroom apartment clean with just the two of us living here.... I suppose we'll do it somehow.

Can't think of anything more to say...need to go to bed!

Saturday, September 20, 2003

Saturday, September 20, 2003 4:51 PM CDT

Luke here...I'm back at the apartment in the middle of the afternoon. Nathan was napping in the recliner when I left. Things are still going well overall. Nathan has been feeling pretty well given the high doses of chemo he is receiving. He vomitted twice yesterday, but it never really got him down. This morning it seemed as if he wouldn't have an appetite, but he ate a tiny bit for breakfast and a good lunch as well as a snack in the afternoon. He is really tired today. The chemo does that to him. This afternoon is the first day he has napped.

He is doing well, but he really doesn't like all of the "stuff" that happens. So far, here is how his day usually shapes up. He wakes up around 7:30am. We are back in his room by the time he wakes up. He has been waking in a fairly good mood. He has breakfast pretty soon and then the nastiness begins. He has his morning oral meds. At this point, it consists of a crushed up vitamin mixed with water and an anti-fungal that supposedly tastes somewhat like banana. After the oral meds, it is on to mouth care. This consists of swabbing his mouth with something they call troche. Then we wait 20 minutes and swab his mouth with peridex. He tolerates the troche but hates the minty taste of the peridex. The Fellow for the oncology ward ususally rounds in the morning, but we don't see them for long. His attending is the on call doctor from his clinic and they round at about 9am. He is continuously on IV fluids and chemo. Every hour he has his blood pressure taken. One of the chemo drugs can cause low blood pressure. Every four hours they take thorough vitals where they listen to his heart, lungs, bowels, take his temp, and measure the oxygen in his blood. He has blood drawn for labs at around 4 or 5am and then again in the afternoon. After lunch he has mouth care again. For the next couple of days we are cleaning his catheter site twice a day, so that happens in the afternoon. After dinner we give him a bath and then do the nightly catheter site cleaning, give him his oral meds, and then do the third mouth care of the day. Then we settle in and watch tv or play for awhile. At around 8pm we clean up his room and put a video on for him. When we are ready to leave and he is ready for bed, he really wants us to leave so we take off. Apparently he is perfect for the nurses throughout the night. I guess one night he called the nurses to his room, but he really hadn't. He was asleep but had put his head against the call button. Another night he did wake up and ask for us, but calmed down and went to sleep. He is doing great with us being gone in the evenings. He complains about most of the things that we have to do (oral meds, mouth care, line care). For the most part he holds still, but complains. It is difficult. He will get pretty sad and ask to go home or scream, "Get me out of here!". That is hard. We are trying a sticker chart with rewards after every N stickers. He won't fall for that for long though and as he begins to feel bad, it will probably get harder. At some point if it gets bad enough we will lean on the nursing staff more for them to be the bad guys. All in all he does great though.

So far his counts are still pretty good. He has today and tomorrow of chemo, and then we wait until Thursday to get his stem cells. His counts will likely begin to fall soon and he will likely feel pretty bad.

So far so good though.

Friday, September 19, 2003

Friday, September 19, 2003 11:07 AM CDT

Susan here..

Yesterday Nathan started chemo. He felt fine and Luke and I a took shifts being away from the hospital. On my shift we played for quite a while in the play room. Last night he had a pretty good night. I guess he woke up once and wanted us but the nurse calmed him down and he went back to sleep.

Today is more of the same with more chemo. He is on 3 chemo infussions. One he gets over 20 minutes for three days and the others he gets continuosly for 4 days. This morning I gave him some medicine and he threw it right back up but then just wanted to eat again. He is in great spirits and is playing and singing to himself and having fun.

We have to do mouth care 3 times a day and he doesn't like that at all. He also has his dressing changed once a day, though they might do it twice today. He really doesn't like that. It is so hard to force him to do these things that he hates and that scare him over and over again. It is really emotionally draining.

Luke and I are doing OK but are really tired. We have been leaving the hospital around 8:15 or so and then getting a bite to eat afterwards. Neither of us is sleeping very well.

If you would like to send any mail to Nathan we ask that you send it to us where we are staying and we can then clean it properly and give it to him. The address will be in the hospital information area at the bottom of the main page.

Wednesday, September 17, 2003

Wednesday, September 17, 2003 10:41 PM CDT

Luke here...I'm beat, so I'll miss a lot and probably seem a little incoherent. The bottom line is that it was a pretty good day, although a very long one. Where to start? Nathan had a good night last night. He went to bed early and slept very well in the room in the apartment. He got a good 12 hours sleep. We got to the hospital and into the unit at around 8:30 am. Not much happened today. They want the patient checked in to get familiar with the unit. We will be talking a lot about the day we are on. The day he receives his stem cell infusion is day 0. Days prior to that are negative numbered days. Today was day -8. Tomorrow is day -7 and his chemo begins. Today mostly consisted of answering a lot of questions, getting to know the staff, getting measured, weighed, and etc. We could have gotten a pass to leave the unit since his chemo hasn't started, but since he will be forced to stay on the unit once things start, we didn't want to set the precedent that he was allowed to leave, so we stayed in.

I'm going to wrap things up. I'm fading fast. We were worried about leaving him alone tonight. We prepped him all day and he was upset about it when we talked, but when the time came he was more upset about putting away his toys than he was about us leaving. The nurse was reading him a book when we left and he didn't raise a fit. Hopefully this will go well. Parents are encouraged not to sleep over and there is only a recliner if we did. We will stay on nights he is really sick, but most nights we will be coming back to our apartment, which is very nice and comfortable.

We left his address and room number information back at the hospital. Sometime tomorrow we'll try and post that information.

 

Tuesday, September 16, 2003

Tuesday, September 16, 2003 7:08 PM CDT

Susan here..

Well we made it up to Denver this afternoon. We have checked in to Brent's Place and the apartment is very nice. Unfortunately Nathan has a little diarrhea and isn't feeling so great. We are really hoping it is not a virus. We'll see how he does in the night. He went to bed around 5:45. It has been quite a day.

We check into the hospital at 8:30 tomorrow morning. We aren't really sure what all they will be doing wih him.

Someone will update tomorrow with more details. I am dreading leaving him at the hospital tomorrow night because I know he will get very upset that we can't sleep there wih him. He has to get used to it though.

Saturday, September 13, 2003

Saturday, September 13, 2003 6:46 PM CDT

Susan here...

Yesterday was a very long day. We left for Denver around 5:15 am. Traffic wasn't so bad at least. We arrived in radiology for the kidney function test and Nathan was injected with a radioactive isotope. He then had is blood drawn after 10 minutes and after 20 minutes.

We went upstairs to the oncology unit and he had his blood drawn and hieght and weight checked. Surprisingly he has grown an inch since June. He is now 40 inches tall. At 9:00 we met with the dietician. She talked to us about Nathan's diet and how food and nutrition would work during transplant. He will be on a "low-bacteria" diet. This means no fresh fruits and vegetable or yogurt. None of those things are allowed on the unit even.

After that we went upstairs to the bone marrow transplant unit for a tour. We had to wash our hands thoroughly and wear a gown but no masks. There are six patient rooms on the unit and it is hepa-filtered. There is also a playroom and a family room. Most of the time Nathan will be allowed to leave his room and go to these areas. There is also a room with a bathtub for him to bathe once a day. He will not have to wear a gown as a patient and can wear his own clothes. There is a TV with a VCR in the room.

After the tour we had a lunch break and took a walk outside.

We then went back for another blood draw for the kidney test and then back up to oncology. We met with the child life specialist whose job it is to entertain Nathan and help him cope. After that a nurse came in and took a sample of his nose mucous which did not make him happy.

We then met with Dr. Giller who is in charge of tranaplant at Children's Hospital. He talked to us about the different chemo drugs that will be used and their side effects.

After that we left the hospital and went to the Denver office affiliated with Nathan's local doctors. We met with Dr. Smith who oversees transplant of their patients. He and Dr. Giller will be working together. Nathan is their first patient since Dr. Smith started sending patients to Children's instead of a different hospital. Dr. Smith will be the primary doctor in charge. He told us he is going to Africa in the middle of it all however. He talked with us some more about Nathan's test results and the risks. He said there is a 5% risk of mortality from the transplant. Of course his risk is mcuh higher if he doesn't have the tranplsant - but it is still scary to think we are sending him off to do something that may kill him. He was very please about Nathan's kidney function which Dr. Giller said was super-normal. He has very good kidneys apparently. Kidney function is very important in transplant and so they were very happy about that.

Oh yeah - for logistical reasons it was decided Nathan will be admitted on Wednesday instead of Tuesday. We will probably go up Tuesday afternoon and check into the apartment and let Nathan see where we will be staying. He will begin chemo on Thursday and then have 4 days of chemo. The following Thursday (the 25th) he will get his stem cells back. That day is referred to as "Day 0" and the day following would be "day +1". We will be staying in Denver until at least day +30. Insurance hassles might keep us in Denver longer (with Nathan out of the hospital). We'll cross that bridge when we come to it.

So - that was our day. We still don't have any answers about the CT scan. Every assumes we will just go ahead with transplant. Dr. Smith says that since Nathans bone marrow cleared up completely and his tumor shrank and died that he definately responds well to chemo and so hopefully the transplant can do its job.

That's the update - we will update again in a few days.

Thursday, September 11, 2003

Thursday, September 11, 2003 7:10 PM CDT

Susan here

Well it has been a tiring week so far. Today Nathan had an echocardiogram, and EKG, a dentist appointment, a hearing test and a visit to the clinic. All were OK except they needed dental x-rays at the dentist and had to hold him down and force him to do it. That was awful.

At the clinic we got some news that his CT scan showed that there was still some dead tumor in him. His surgeons told Luke they had left no visible chunks of tumor. Nathan's doctor is planning to call them to find out what is going on. There is no chance that it is new growth since it is consistant with what they saw in there before and it is definately calcified (dead). Still we are upset about this and would love some answers. He will be having radiation to that area after transplant that may get rid of it. We may also consult different surgeons depending on what we find out. This does not change the transplant date of Tuesday. The rest of the scans show no other tumors anywhere in his body.

The test to detect minimal cancer cells in his bone marrow is being rerun for a 3rd time. It doesn't appear to have any neuroblastoma but does have some strange looking cells that they are making doubly sure that it isn't cancer. The strange cells may be his bone marrow working hard to create more white cells.

Tomorrow we are off to Denver for the day. We have to be there at 7:15 am and so are dropping Julia off at a friend's house at 5:00. That is how wonderful my friends here are!!!! Nathan has a kindey test and we will meet with lots of specialists.

A piece of good news is that we know where we will be staying. There are apartments for families to reside in after transplant that are right by the hospital. Currently there are several vacancies and so they are letting us move in right away. It will be a 2 bedroom fully furnished apartment. Dinner is provided on Mondays. When we are settled in we will provide contact information.

I am sure there is more I meant to say but I am exhausted from a very long day. We will update this weekend.

Wednesday, September 10, 2003

Wednesday, September 10, 2003 9:55 AM CDT

Luke here...Just thought I would give a quick update. We are in the middle of a hectic week to say the least in prep for beginning transplant on Tuesday. Our clinic spent the day on Monday getting everything scheduled. Yesterday Nathan had a bone scan. He did well. This is a scary study for him as the camera has to be within inches of his face for about 5 minutes or so. He did well and our onc already looked at it and said it looked normal. The basics of the test is to check for met sites in the bone or other bone irregularities (like making sure there is no infection in bone before beginning transplant). Today Susan and Nathan are at the outpatient radiology center for CT scans of his abdomen and pelvis. Tomorrow things get nuts. He has rib x-rays, and echocardiogram, an ekg, a dentist appointment, and an appointment at his clinic. Hmm...I think I'm missing something on tomorrow's schedule. Friday we go to The Children's Hospital (TCH) Denver. He needs a nuclear medicine study to test his kidney function. They are scheduling a crazy day for us that starts at 7:15 with an injection for Nate. He will have numerous blood draws throughout the day. We will meet with the Child Life therapist, a nutritionist, his transplant doctor, a social worker, and possibly some other specialists that will be involved in his care. Hopefully we get a tour of the transplant unit. So, that is our hectic week followed by what we can hopefully make a good family weekend before checking into TCH for the long haul on Tuesday.

In the results arena, we do have the results of the head and neck CT scan Nathan had in the hospital last week. Everything is normal. They showed some congestion in his sinuses, but no mets which is what we were concerned about. He also got results from the test of specific acids (HVA and VMA) in the urine that are markers for NB. One of the tests came back normal and the other elevated slightly outside of the normal range. At diagnosis these were 10 and 40 times normal respectively, so this is good. Some foods can impact these tests. One of those is apparently vanilla and Nathan got a healthy portion of his Grandma Kathy's homeade vanilla icecream the night before his urine was collected. We are still waiting on an important test on his bone marrow aspirate. This is a test for NB done by "staining" the sample with an antibody that attaches itself to NB. Apparently the test (done in a lab in LA) didn't run properly the first time and that we should have results in a couple of days.

I was going to add a link at the bottom of the page, but I don't seem to be smart enough to figure out how to do that through this CaringBridge setup. I'll ask Susan later. In the meantime, I'll put the url here in the journal entry. This is a faq I found at the NIH on transplant if people are interested in the basics. Nathan will be having an autologous peripheral stem cell transplant (http://cis.nci.nih.gov/fact/7_41.htm).

So much for my brief update.

Monday, September 8, 2003

Monday, September 8, 2003 2:35 PM CDT

Susan here

Nathan is still doing well. He is glad to be home and has resumed normal activities. We are waiting to hear what the schedule is for all the tests they are cramming in this week.

I have updated our family web page for August if you want to take a peek (see link at bottom of main page)

Will update when we know something new.

Saturday, September 6, 2003

Saturday, September 6, 2003 3:11 PM CDT
Susan here..
Nathan is home and doing great. Yesterday he got up to walk and had no problems. He went to the playroom to play and he was clibming on chairs. Last night was not good. He didn't sleep very much. His bowels are working again and they were bothering him and he could not get comfortable.
He was released around 11:00 today and is happy to be home.
On the news front there is quite a bit. First - the big news is that transplant is scheduled for Sept. 16. Yes - we got 11 days notice. We are glad it is happening but we have a lot to figure out (including Julia's care) in the next couple of days. No one expected it to be this soon.
Nathan's tumor was 99.9ancer free. His doctor saw only the smallest portion of viable cancer in it. We are still waiting on the bone marrow results.
This week will be filled with tests. He has about 6 or so tests to be scheduled between Mon-Thurs and then has to go to Children's hospital in Denver on Friday for some tests. The following Tuesday he checks in.
Needless to say Luke and I are very overwhelmed with figuring out preparations. We will start in ernest tomorrow.
We'll keep you updated.

Friday, September 5, 2003

Friday, September 5, 2003 2:13 PM CDT

Luke here...Nathan continues to recover very well. He had a good night last night. As the day progressed he was drank a good amount of juice and handled it well. They gave him some broth too and he had quite a bit of that. He got off of his fluid IV and they switched him from "clear fluids" to "full fluids" so he could have milk! He sucked down 20oz of milk last night after having almost the same amount of juice and a lot of broth. He slept well with few interruptions and slept in a little. This morning first thing after getting him up he had a CT scan of his sinuses and neck. Something showed up in a previous scan and they are following up on that. The doctors don't think there is anything there, but we obviously have to check. He handled the scan wonderfully and did not have to be sedated. When we got back upstairs the doctors started showing up on their rounds. Nathan was cleared to eat whatever he wanted and promptly asked for a grilled cheese sandwich and some chocolate cake.

He is also now being unhooked from most devices. He had his epidural taken out as well as the urinary catheter. He is still hooked up to some oxygen, but as we try to get him walking this afternoon where hoping his breathing deepens and we can get rid of that too. As long as we can get him walking and his pain is handled okay, then he will likely come home tomorrow! His spirits are great and he is recoving so well.

We got the report on the tumor from the pathologist. What is it with radiologists and pathologists that they can't write a report that tells anyone anything (I apologize to the many radiologist friends that I have)? I'm not talking about Susan and I understanding either. We have never gotten a single report that told the whole story to our oncologist either. He always has to talk directly to the pathologist or radioligist to get "the story between the lines". As you may have guessed, we got another report that is contradictory at worst and not at all clear at best. The clear good news is that there were good "margins" around the tumor. My understanding is that at the edges of what the surgeons removed the walls of the tumor were relatively thick with dead or calcified material. This was all true except for one section of the tumor which the surgeons think was the piece that was stuck to the tumor. They cauterized the area of the kidney where they removed it, so they feel pretty good about that part of the path report. We aren't so sure though about the makeup of the tumor itself (how much of it is active neuroblastoma). We'll get more on that hopefully soon.

I absolutely know I'm missing lots of information in this, but the most important thing for people to take away is that Nathan is feeling well, being increasingly active, and should be home tomorrow. And above all else we finally got that damned tumor out of his body.

Thanks to everyone for following along, praying, sending gifts, e-mails, etc.

Thursday, September 4, 2003

Thursday, September 4, 2003 2:33 PM CDT

Susan here..

Today Nathan is feeling much better. In fact he is out of the ICU and on the pediatrics ward. He is now in room 3518.

He is very alert and interactive today and is sitting up and playing with toys. The child life specialist came by and they did some art. He is on clear liquids but he really wants a grilled cheese sandwich. He should be allowed to have solid food tomorrow.

He will have his cat scan of his sinus and neck tomorrow morning.

They will also take his epidural and urinary catheter out tomorrow. I image after that wears off they will have him up and walking.

We are happy to be on the regular ward now. He has a private room and it looks over the park and the mountains. The PICU room looked out onto the roof and parking lot but we could also see the olympic flame which resides lit at all times at the USA olymipic headquarters right next door to the hospital.

Thanks for checking in...everyone is happy with his progress and he is in good sprits.

Wednesday, September 3, 2003

Wednesday, September 3, 2003 10:07 AM CDT

Susan here...

Nathan had a bit of a rough night but is feeling pretty good this morning.

He had to have a urinary catheter and it wasn't working right and had to be replaced. This was very painful and traumatic for him and it took two tries. Around midnight his pain broke through and he was really hurting. They upped his epidural and then Luke spent a few hours holding Nathan's incision since that seemed to make him feel better and he wouldn't let Luke let go. We were both able to stay with him in the ICU and so that was good. We have a computer here with us and so that is how we are updating.

This morning he is sleepy and is having a blood transfusion as he is quite anemic. His doctor have been by but his oncologists haven't spoken to the surgeon and the surgeon doing rounds wasn't involved in the surgery so we have no additional information this morning. Nathan's oncologist will speak with the surgeon later and give us a call.

We will update this entry later today so make sure to check the end to see if there is more information later.

It is later now. Nathan's urinary catheter stopped working again and he had to have yet another one placed. His urine was chrystalizing and the catheter was blocked. The nexw one has been working well. We will not likely let them place another one if this one fails.

We talked to Nathan's Onc about the surgery and he explained the areas in which the surgeons could not say for sure all the tumor was gone. We are waiting on the pathology of the tumor and the bone marrow test to come back and those results will determine if he has more chemo. We expect the bone marrow result mon or tues and the tumor pathology friday.

Nathan slept for about 4 hours this afternoon. He then watched 2 dvds and has now gone back to sleep. Hopefully he will not be awake all night.

He is still in ICU. This is just fine with us as it is a very nice private room with great nurses. I will stay tonight and Luke will go home and we will trade off. Luke's parents are here until sometime on Friday. We expect Nathan to go home somewhere around Monday.

Memorial hospital has a feature where you can send an e-greeting that will be printed and hand-delivered to the patient. If you want to do this cut and paste this link in your browser: http://mboard.memhospcs.org/web/patientcards.nsf/EGC?OpenForm

He is currently in room 3558 but this will change in a day or two so check back if you a sending a greeting.

Tuesday, September 2, 2003

Tuesday, September 2, 2003 3:34 PM CDT

Luke here...Nathan is recovering from his surgery and doing well. He has been awake some, but he is mostly sleeping things off so far. The surgery went very well (or so we are told) and the results are as good as we could have asked for. The surgeons won't guarantee they got all of the tumor, but they feel they got most of it and got everything that they could see or find. The tumor had been adhered to the right kidney and they cauterized the tissue in the area where the tumor had been attached. It isn't clear to us now if there was anything sizable left there. We will drill for more details later, but the good news is that they feel they got most if not all of the tumor and Nathan is doing well and recovering. We will be in the PICU tonight. We can both stay here with him. He could be in the PICU until tomorrow, or longer if necessary. His stay will probably be somewhere in the 4 - 7 day range. We'll continue to post about his recovery. We knew people would be checking in about the surgery, so we wanted to let everyone know the good news now.

Thanks for keeping Nathan in your thoughts and prayers.

Monday, September 1, 2003

Monday, September 1, 2003 6:01 PM CDT
Susan here..
We are having a pretty good weekend. The kids are having a great time with Grandpa Mike and Grandma Kathy. Luke and I have been able to run some errands and get ready.
We will go in at 6:30 tomorrow morning and the surgery begins at 9:15. A child life specialist will be with Nathan before the surgery to talk to him about it and do some other activities. We expect the surgery to be several hours long. One way or another we will try to have the page updated tomorrow night.
One detail Luke left off is that Nathan may or may not have another round of chemo after the surgery. They will decide based on what they see during the surgery.