Friday, August 29, 2003

Friday, August 29, 2003 8:58 PM CDT

Luke here. Too much to try to relay. I'll just try to go chronologically. Let's see. Where did we leave off. On Wednesday I think. Thursday morning was to start off with an MIBG scan. This is a long study where stillness is important, so Nathan was sedated. We showed up plenty early to the outpatient radiology and hung out for a few minutes before they were ready for him. Nathan was sedated and the scans began. They took two different scans. One is a 3d image of his torso and the other is a whole body scan from head to toe. The purpose of the study is to show areas of neuroblastoma throughout his whole body. One of the scans took about 32 minutes and the other 37. It is pretty long, but Nathan is out for all of it and we were in the room. We could actually see the image as it was processing which was a little nerve racking. We were prepared for Nathan to come off of the drugs badly as he usually does, but he came off in a pretty good mood. He was wobbly all day, but he wasn't too upset. This morning we had an appointment for a brief exam at the surgeons' clinic. We met with the nurse practitioner and it was short and sweet. We began feeling a real crunch in terms of getting all of our doubts and concerns addressed by the end of the day since we were approaching the end of the day on a Friday of a holiday weekend with Nathan's surgery scheduled first thing Tuesday morning. We have a lot of confidence in each of Nathan's doctors individually, but there were some very important decisions about his surgery that we felt had to be made as a team (with our input too!). We needed all (primary oncs, transplant docs, surgeons) on the same page and weren't getting any information that seemed like they were there yet and we weren't understanding the decision making process. We had a phone call with his primary onc who promised to call around and poll the other docs. We got a call from one of the surgeons. That was an extremely frustrating conversation for Susan, but she ended up with some good information. Later we got a call from our primary onc with the information we needed to feel comfortable and the assurrance that all of the doctors had come to consensus together as a team. It was an extremely frustrating afternoon, but we are all set and happy enough with the decisions made. The upshot is that they will attempt to remove the entire tumor, but won't take the kidney. This was the main point that we needed clarified. There is a chance they can't get the entire tumor and leave the kidney. All of the docs think that he needs the kidney for transplant so if they can't take all of the tumor without taking the kidney, they will debulk as much as they can and biopsy whatever the leave attached to the kidney.

Lets see. What else. The MIBG results were good. He did not show uptake throughout his body like he did in his previous MIBG. The disease that was in his arm, hips, legs, and orbital areas did not show disease. There was something that showed up in his head that did not show up before. It wasn't clear if it was tumor uptake, but we and the docs don't think it was. He will have another CT scan of his head to make sure. It could have been some uptake in his sinuses or something like that. The docs don't seem too worried, and if it weren't for this question area the results of the MIBG would be very positive. Our primary onc also got the results of hte hearing tests back. Nathan's hearing loss is at lower frequencies than he would have hoped or expected. We'll probably be retesting soon. We knew there would be hearing loss and that it could be down in frequencies that will or could impact his speech or require hearing aids in the future. We are absolutely fine with this if it means ridding his body of this cancer.

I know I'm leaving something off. We are totally exhausted tonight. It has been a long week. We'll be updating though with information as we get it or remember we left it out. Our plans for this weekend are just to try and have a good and normal weekend before the surgery and long week get started on Tuesday.

Thanks for keeping us in your thoughts and prayers.

Wednesday, August 27, 2003

Wednesday, August 27, 2003 9:09 PM CDT

Susan here...

Well another very long day with lots of information. We are exhausted but I will try to detail it the best I can int he order it happened.

Nathan's doctors called yesterday to ask him to come in later in the day to do the bone marrow aspiration. So we changed plans to do that at 1:00 and have them put in his IV for the injection at 3:00.

We went in and Nathan's doctor told us that he found out that the bone marrow sample needed to be fedexed by noon the same day as it is taken and so we couldn't do it. After some talking we decided to wait to see if Nathan would have surgery next week and do it then. We talked some more about the cat scan and how he thought the kidney still looked like it would have to be removed and how they wouldn't want to do that until after transplant. There was much discussion about the risk of going though transplant with only one kidney versus the risk of not removing the tumor until after transplant and there are no good answers. Also - the official radiologist's report for the cat scan showed only minial shrinkage whereas we all thought it was a lot more than that. We talked at length about

His doctor went off to call the surgeons and to our surprise the surgeons were very pleased with the cat scan and felt they may even be able to save the kidney. They had already started trying to schedule the surgery for next week. Needless to say that was some great news.

Next it was time to place Nathan's IV. Since he was going to get int he car and go to the radiologists afterwards they wanted to put it in his hand so he didn't have to keep his elbow straight the whole time. After 45 awful minutes and 5 tries we ended up putting it in his inner elbow after all. It was a truly horrible experience. Nathan was so upset and scared and insisted on watching them each time and screaming for them not to put the needle in him and not to hurt him. Everyone felt so bad and the nurses are worried he won't like them now. After it was finally all over he was fine (but starving due to his eating being restricted in anticipation of the bone marrow aspiration) and even though we were already very late we had to go to the grocery store and get him a banana to eat. We finally made it to the radiologist and had to wait around for quite awhile and then he finally got his injection and we went home.

We got home and had a message from the surgeons that Nathan's surgery will be Tuesday morning. I called his doctor to tell him and he was very pleased. He had talked to the transplant doctor this afternoon and they determined that it would be best for him to have his surgery and then have another round of chemo to kill off any leftover pieces of tumor. This is a concern that Luke and I have had for a long time when they had been talking about other options that didn't involve more chemo after surgery. The chemo they give him will involve one new chemo drug that will replace the one that is damaging to his heart. After chemo he will go into transplant after about 3-4 weeks. This would put transplant to begin somewhere in the first two weeks of October.

Before Tuesday we still need to determine if the surgeons will take the kidney with the tumor if neccessary or leave the tumor there if they can't save the kidney. Nathan's doctor plans to talk to the tranplant doctor more about this.

Nathan is still going in for the MIBG scan tomorrow. If it is positive for cancer it may change all of the things I just wrote. Nathan's doctor is very hopeful it won't be. We should have a good idea by Thursday night because they will need to rescan him Friday if they see anything in the scan. If not - he won't have to go back in. They will take his bone marrow during surgery Tuesday and send it off for testing which will take about a week.

Friday he goes to the surgeons for a pre-surgery physical. Then we will have the weekend to rest a little before surgery.

We will try to update tomorrow night with any news. We had so much information today that we are overloaded so I apologize if this was confusing in any way.

All in all - we are very happy with the surgery being scheduled and just want to get this scan tomorrow over with and then we can enjoy our weekend.

By the way - if you have any questions feel free to email us at the link on the page and we will try to answer them in future journal entries as I am sure that many others might have the same types of questions. We appreciate your keeping up on Nathan.

Tuesday, August 26, 2003

Tuesday, August 26, 2003 7:00 AM CDT

Susan here...

We had a good weekend. On Saturday Nathan just wanted to be out of the house and so we spent most of the day shopping. Sunday morning we had breakfast out with my parents and both kids were very good and had a really good time. Afterwards we went to my parent's apartment and hung out for a little while.

Monday was a busy day. There is a long story about running around to different pharmacies trying to get Nathan his lugols solution which is a iodine solution he has to take prior to the MIBG scan. We finally got it. We went to the clinic and Nathan's white counts were still very good (we were surprised about this since he is off the neupogen) and his other counts were on the low side but they should be climbing on their own.

I looked at his CT scan with his doctor. It is much smaller and more calcified (dead). His doctor was encouraged by this and will be consulting with the surgeons and Nathan's transplant DR to figure out the next step. The MIBG scan is a piece of the puzzle we are still waiting on because if it shows more than a very minimal amount of disease Nathan will probably have more chemo. If we go ahead with surgery it will probably happen next week. They will open him up and then decide if they can get the tumor out or not.

After the clinic we went out for lunch and then to get his hearing test (via the hospital where I thought the test was and also where I ordered his CT scan to be put on CD so Luke could see it). So after we got to the right building Nathan had his test. Last time he was sedated and they measured his brainwaves to do it. This time he did it the normal way. He did a great job and the woman giving him the test said she'd never had a 3 year old who could do it that way. (raise the hand when hearing the tone) She said he responded like a 5 or 6 year old with it.

She didn't do the full spectrum of sounds since she didn't want to push it and because she felt she had good preliminary results. He does have high frequency hearing loss fromt he chemo. This isn't affecting his everyday life or speech at all so we are not really concerned. Frankly, his hearing can be fixed and we are trying to save his life so a hearing aid is not a big deal. They will just have him return from time to time to monitor him.

The nuclear medicine department did not get in the isotope for Nathan's MIBG scan. They had to move everything by one day. So he will be injected Wednesday afternoon and scanned Thursday and possibly rescaned on Friday. If the Thursday scan shows disease then they will do a short 5 minute scan on Friday to see if 24 hours later any disease shows. This gives them an idea of how active the disease is. The thursday scan will take about an hour and Nathan will be sedated.

Wednesday morning Nathan will go to the clinic and most likely have a bone marrow aspiration. That will be sent away for testing. It will probably take a week to come back.

So - that's the update for now. Please pray that Nathan's MIBG scan is negative and that the surgeons feel they can operate. We will keep you updated.

Friday, August 22, 2003

Friday, August 22, 2003 7:46 PM CDT
Susan here
We went in for blood counts this morning at 9:30. Nathan's counts are finally up and he is free to go out in public! While we were there we hashed out Nathan's test schedule and decided we had better try to schedule the CT scan today. It worked out to schedule it for 2:0o pm. While we were still at the clinic one of out favorite nurses frm the hospital called the clinic to tell them that the construction workers had sent up some toy trucks for Nathan to have. So we went to the hospital to pick them up. It was a very nice set of Caterpillar road building trucks. Nathan was very excited and the nurses were so happy so see him react that way. They really are great over there.
We went home and I went to get the oral contrast solution. We had to give him the contrast at home prior to gettin ghte scan. HE didn't want to drink it but did really well in then end with a toy as the incentive. He was so great during the CT scan and wasn't scared. After the CT scan he had a chest XRay and he did really well with that too. We are so impressed with him. We went for some ice cream afterwards.
He had a rough late afternoon. His bowel movements are so painful and he was having problems and so he spent several hours screaming every few minutes. Poor thing. He went to bed a little early and we gave him some tylenol with codeine. Hopefully he can get some sleep.
He goes to the clinic for counts Monday morning and has a hearing test Monday afternoon. On Tuesday he goes in the afternoon to get an injection (done through IV) for the radioactive isotope that he needs for his MIBG scan on Wednesday (at 9:30). He might also have another scan on Thursday depending on how the Wednesday scan turns out. The MIBG scan is a nuclear medicine scan in which the radioactive isotope attaches only to active neuroblastoma cells. As the scanner passes over the cancerous cells "light up" on the scan. It will be kind of nerve-wracking because we can see the monitor showing the scan as it is happening so I am sure we will be squinting at it from afar to see if it is lighting up.
He will also have a bone marrow aspiration sometime next week. We will figure that our on Monday. We might also know something about the CT scan on Monday. As usual we will not be holding our breath. We are hoping to get a consult with the surgeons about it by the end of next week.
All in all we are happy we got started on the scans today. We will hopefully have a fun weekend not being stuck at home!
I hope you all have a good weekend too!

Wednesday, August 20, 2003

Wednesday, August 20, 2003 8:59 PM CDT
Susan writing..
Well - we had a surprise long day, a truck encounter and also some good news.
First the good news...Nathan's doctor FINALLY got to look at his bone bone/marrow sample slides. He saw about 4 cells that looked abnormal. He didn't think they were probably even active neuroblastoma cells since NB cells like to clump together and these were isolated. He thinks at most there is way less than 1% cancerous cells and he really things there is no active cancer cells at all. They will do a chemical test on the bone marrow they take next week to see what that says. Nathan's tests are not scheduled yet; pending insurance authorizations, but we will hopefully know tomorrow when they will be.
Now for the truck encounter...
I took Nathan in to the clinic at 9:00. The receptionist had arranged for a fire truck to visit and so after having his blood drawn he and 2 other 3 year olds went outside to see the fire truck. Nathan most enjoyed the flashing lights. He was intimidated and was scared to sit in it. I finally got him to do that but I couldn't convince him to take a ride in it. He had fun though. I will post some pictures tomorrow.

As for the long day...
Nathan's platelets were very very low. The hospital had a shortage of platelets and said he would have to go there to get them and that they would not be available until later. His red blood (hemoglobin) was also low and since we had to go to the hospital anyway we decided to do those as well. Unfortunately the hospital has a new policy that same day red blood cell transfusion done there also have to be type and crossed at the hospital (we usually do it in the clinic). So after the fire truck we ran over to the hospital and did the type and cross. We had to register and wait and all that. Then we grabbed McDonalds and went back to the clinic to just wait around there since he still can't be out and about and I didn't want to take him home in the interim. At 1:00 we went back to the hospital (after a pit stop at walgreens for a toy) and had to go through registration again and wait around. We finally got up to the room at about 1:30 and he began to be transfused at about 2:15. Luke came at 5:30 when he was done working and I left around 6:00 to go home and see Julia and put her to bed. Luke and Nathan arrived home at 7:30 and Nathan went straight to bed.
Tomorrow we have nothing scheduled so that is good for him. His white blood count is up to .4 from .1 so we are getting somewhere. That is still very low but moving in the right direction.
My vent for the day (which I alluded to above) is that his hospital can't seem to keep all Nathan's info in their system. I am so tired of giving out Luke's employment information, etc. every time we register. I thought this was supposed to be what computers did. We are thinking of writing a letter to the hospital.
So back to the clinic on Friday for blood counts!

Tuesday, August 19, 2003

Tuesday, August 19, 2003 9:40 AM CDT
Luke here. Things are going okay. Sunday we had a pretty good day. We went for a short hike in the morning. We have been doing this and the last couple of times Nathan has worn out quickly. This time we started with the kids both in backpacks so we could get a good, short hike in before turning them loose to stomp around and get tired. It worked well and we had a good time.

Nathan went in for counts yesterday morning and everyone expected him to need red blood. The cutoff for transufsion is a hemoglobin reading of 8. He was transfused last Thursday at 7.2. Friday he was only at 8.something which landed us back at the hospital for transfusion on Saturday at which time he was at 6.4. At that rate there was no way either we or the doctors thought he would hold the count enough to avoid Monday transfusion. Yesterday he was at 9.9! His platelets are little low, but we should hold him off until tomorrow for a transfusion on those, so he got most of the day off yesterday with no planned visits today. His white blood cells are still extremely low, but were up slightly so he may be on the rebound.
We are getting tests scheduled now. In the next week or so he will likely have a CT scan of his primary tumor, chest x-rays, an MIBG scan (a nuclear medicine test that picks up NB involvement throughout the whole body), and likely a hearing test because if we have to do additional chemo he will likely get the meds that can cause hearing damage. After that we can meet with surgeons to determine if we can move forward with surgery and get an idea of where he stands as far as residual disease goes so we can start planning for transplant or decide to do additional chemo.
He is hanging in really well and continues to be a brave, strong little guy.
This recent bout with counts has reminded me once again how we could not treat Nathan's disease without the aid of blood products. Wherever you live there are people battling disease that could not survive without the aid of donated blood. Please take the time to give at your local blood bank, corporate blood drive, etc and know that you are helping someone like Nathan battle this or similar horrible conditions.

Sunday, August 17, 2003

Sunday, August 17, 2003 8:25 AM CDT

Luke here. Saturday was an okay day. Susan and Julia spent the day together and Nathan and I spent the day at the hospital for transfusions. On Friday we were surprised by how low his counts were so close to transfusions. We had some options to either go ahead with red blood cell transfusion on Saturday or maybe wait. We decided to transfuse yesterday and I'm glad we did. His counts had continued to drop drastically and he really needed the blood products. He got red blood cells, platelets, and some antibiotics. We were there from just before 9am until 5pm. He did really well and was in pretty good spirits all day considering. His red blood cells were low enough before we started though that the transfusion will likely not have gotten him back into the normal range for long and we are expecting the need for another transfusion on Monday. That is putting us on an every other day schedule. This is likely the bone marrow/stem cell fatigue from so much high dose chemo setting in. We will drill the doctors on the reasons a little more on Monday.

Friday, August 15, 2003

Friday, August 15, 2003 5:39 PM CDT
Susan writing
Nathan had a good night last night. He was up once wanting apple juice but went back to sleep.
We went to the clinic this morning. His red blood cell counts were back down to where they were on Wednesday before the blood transfusion he had yesterday. His platelets also dropeed way back down. So tomorrow he will go to the hospital (since the clinic is closed) and get red blood cells and possibly platelets as well. He will not be admitted, just stay there for the transfusion and antibiotic and head home. He will be there most of the day though.
Nathan's doctor was in another town today and had not been able to look at his bone marrow results. The other doctor was going to try to look this afternoon. Once again - we are not holding our breath!
We'll let you know when we know anything new.

Thursday, August 14, 2003

Thursday, August 14, 2003 8:10 PM CDT

Susan here..

Well - Nathan is home. He didn't run a fever all night and so after getting red blood cells today he came home around 4:30. We are so glad he didn't have to stay for three days.

He did really well in the hospital. The Child Life specialist did several art activities with him and another volunteer brought him books and toys from the playroom and read to him while we were eating lunch.

After we got home he was OK until he had a very painful bowel movement and then he wanted to go straight to bed and this was around 5:30 so we'll see how tonight goes.

Nathan's doctor did not get to look at his bone marrow samples this morning due to having a very sick patient in ICU so he will try again tomorrow morning. We are not holding our breath though.

Nathan is going in at 11:00 to have a dose of antibiotics and just kind of assess him for the weekend.

Oh - I almost forgot Nathan's highlight of the day. All day we watched construction equipment out his window. There was a backhoe hauling dirt around and a front end loader loading dirt into a dump truck. Later in the afternoon a security guard showed up and said Nathan's nurse had told him how excited he was about the trucks and he had talked to the foreman about letting Nathan go see the vehicles. It worked out that he was in between infusions so he was hooked off of his IV and went down to see the trucks. He was a little overwhelmed and afraid to sit in them, but he finally did sit in the backhoe with Luke. He was also excited to stand next to the shovel and tires of the front end loader because it was so much bigger than him. He really thought it was cool. They let him keep his hard hat too. Unfortunately there are no pictures. An attempt was made to take a polaroid but it failed. A good friend of mine has been working to set up a construction truck visit for Nathan and we were initially going to do it today so he will probably get another chance when he is feeling better.

We were very pleased with Nathan's care at Memorial Hospital once again. The nurses all adore him. When he showed up last night they were all so happy to see him. Several of them work in the clinic occassionally and others remember him from previous visits. We feel lucky to have such caring nurses tending to him.

Wednesday, August 13, 2003

Wednesday, August 13, 2003 11:34 PM CDT

Luke here. We've kind of been stringing everyone along as far as bone marrow results go, so I'll start there. We got a call with some info from the report late yesterday afternoon. The news was not as good as we wanted to hear, but good news in the grand scheme of things. One of his hips was clean, the other we were told showed "2% neuroblastoma". This left hip started at near 100%, so this is good, but we were hoping for clean. Susan took Nathan to the clinic today for an exam and platelet transfusion. His primary onc got to look at the report and he said the written report was confusing. It said "less than 2%" but also said something else that made him think that it should be considerably less than that. So he is going to the hospital tomorrow to look at the slides and results with the pathologist. More on that tomorrow hopefully.

Nathan is in the hospital tonight. His counts dropped drastically between Monday and this morning and he got a fever. We are lucky that this is only the second admission for a fever while his immune system is low. He was running a fever off and on during the day but didn't hit the magic number (101.5) until about 6:00pm when I got a 102.0 reading on him. At 6:30 we were on our way to the hospital. When we got there he had no temperature but they want to keep him to run antibiotics, do blood cultures, and just monitor him in general for infection. His fever was up over 100 again at about 9:30, but when I left at 10:00 it was down near normal. It is likely he will be in the hospital for a couple of days while his counts are low and his temperature bounces up and down. This is pretty normal for kids in treatment and we are lucky to only have had to do this on two occassions now.

Goodnight.

Tuesday, August 12, 2003

Tuesday, August 12, 2003 9:44 AM CDT
Luke here. Nothing much to report unfortunately. The reports on Nathan's bone marrow biopsy were not available yesterday. We are hoping to get them today, but as Nathan's primary onc is out of the office on Tuesdays, we may not get them until tomorrow morning. Nathan was in for a short exam yesterday. Mostly he just got his counts and a quick check to make sure he tolerated the weekend after chemo well, which he did. His counts are okay and haven't dropped too much yet. His WBC and ANC (immune system indicators) were still up. His hemoglobin was still good so no need for red blood cells yet. His platelets are already low though. As you may remember, we started this cycle without his platelets ever really making counts. He gets an off day today and then back into the clinic tomorrow morning for counts. He will likely need a platelet transfusion tomorrow or Thursday. Definitely by the end of the week. Looks like we will do the CT scan in about a week and half. So right now we will just be monitoring counts and hoping for good results on the bone marrow. We'll be in this mode for a week or so and then we jump into scans and determining when surgery or possible additional rounds of chemo will take place.
Thanks for checking in. We'll post bone marrow results when we get them.

Sunday, August 10, 2003

Sunday, August 10, 2003 6:43 PM CDT
Susan writing...
We had a fun but tiring day today. We had a lazy morning and then decided we needed to get out and so we went to Santa's Workshop at the North Pole http://www.santas-colo.com/ It is a very small amusement park geared towards little kids. Both kids had a lot of fun. Nathan's favorite ride was the train. He also really enjoyed the aerial tram. They had a huge curly slide that Julia really liked as did Nathan. He wore his backpack and walked around most of the time. We were impresssed by his energy. I put some pictures in the photo album.
We're off to the clinic tomorrow morning for blood counts. I'll update sometime later.

 

 

Saturday, August 9, 2003

Saturday, August 9, 2003 10:20 AM CDT

Susan here...

Friday's chemo went relatively well. Nathan really did not want to go and he was feeling kind of sick but he didn't complain too much. He got sick in the car on the way to the clinic. He really seemed to start feeling better when he started eating at the clinic. He ate a whole bagel and a banana (that a staff member went and got for him). He took a 1.5 hour nap in the afternoon and when he woke up his tummy hurt but we gave him some benedryl and that seemed to do the trick. We were done around 3:45. He ate a grilled cheese sandwich when we got home and watched some TV. He went to bed a little early and slept all night with no incidents.

This morning he has been feeling pretty good and ate half a can of spaghetti-o's and a banana. While he was eating his spaghetti-o's he complained because Julia was eating a pop-tart and he could smell it. Go Figure. So anyway - he hasn't thrown up since yesterday morning and is eating well so that is good.

We have no idea yet what we are going to do today. Nathan is hooked up to his IV backpack for hydration and so that is a little bit limiting for him.

Nathan's doctor told us we should have his bone marrow biopsy results on Monday. Of course it seems we don't ever get these results when they think we will - so don't hold your breath!

I hope all of you have a good weekend.

Friday, August 8, 2003

Friday, August 8, 2003 10:03 AM CDT

Luke here. Where to start? Ah, I guess I should start where Susan left things off. Nathan started his chemo on Wednesday even though he technically didn't quite make counts. This was great because it keeps us "on schedule" (if there is such a thing). As Susan noted in her entry, due to the impact of one of his chemo meds on his heart function, they have changed how they are running his meds. This seems to be a little harder on the poor little guy's system. Wednesday night was a rough one in the Gentry household. He came home exhausted from chemo. I guess having toxins pumped into your body for 6 to 8 hours will do that to you. He went to sleep well. We are still giving him IV antibiotics for an infection around his central line site, so I went in to give that to him at 10 pm and when I was taking them off at 10:30 he woke up and got sick. He emptied his stomach pretty quickly and proceeded to dry heave for most of the night. He got a few hours of sleep in the morning. Susan slept in his room on the floor for much of the night.

Yesterday I took him in for his chemo. We got a quicker start than he did on Wednesday because they didn't have to check his counts first. He had a bone marrow aspiration in the late morning. Because he was getting this procedure he couldn't eat in the morning. He was planned to have the procedure in the afternoon, but the nurse heard him begging for pancakes so they moved it up (and one of the staff ran to McDonald's to get pancakes for him - great people). Nathan has had many of these procedures. He has had them totally out while getting other surgery and this was the second he has had in the clinic. They drug him well, but he is awake. I have been there for both of these. The first one went fine. He was awake but not really aware of what they were doing to him. This one he was pretty upset. Nothing horrible and I think there was really only one part that caused him any pain, but he was upset by all of the pushing and etc. Here is what they do. I won't get into too much detail, but this may be a little more than the queasy want to here. Feel free to skip to the next paragraph (I'm on a roll this morning!). They get him a little drugged up. They started him with fentanol. This stuff hits him quick. I was holding him and within a minute he told me, "The benadryl makes me feel funny". From here they kept giving him fentanol and versed (sp?) but I lost track of how many doses and when they hit him with it. He is laid down on his stomach on the exam table. They clean his lower back. Then they perform the same procedure on both hip bones right above his bottom. They shoot up the spots big time with lydacain (sp?). At this point he feels this and it does hurt. They put that needle in deep and shoot enough of the drug in that the site welts up pretty good. Then they take a short spiky and pretty thick needle-like device and push it down hard into his hip. I'm not sure how deep this goes or if it pierces bone, but they really push it down there good. From this they attach a syringe and pull out the aspirate. Then comes the fun part. They take a device that is a long, thin (thin I suppose if it isn't intended to drill into your bone) cylinder with a handle at the end. They stick this thing into the site and screw it down good. They push down hard on his back and really crank away. I don't know the details of how deep they go, but it cuts away and then they screw it out. Then they insert a thin metal plunger down through the handle and push out their core sample. After that they put guaze and a pressure bandage down on the puncture wounds. Normally he comes out of the drugs really horribly but the pancakes did the trick and he calmed down really well.

Okay, after the nasty procedures he had a pretty good day. He ate and kept it down. We played with cars and trucks a lot. He took a short nap in the afternoon. After his nap he was really, really cranky but it wasn't too bad because we finished up and left the clinic by 4pm. He made it home without getting sick in the car which I viewed as a miracle. In my opinion alone with him in the car is the worst time for him to be ill. He handles it well and holds his bin for himself, but I just feel so bad for him and want to help. He threw up in the evening, but then had some dinner and went to bed early. He slept through the night without any problems. Apparently his IV fluids became disconnected and just soaked his bed with saline all night, but he just found a dry spot and slept. He got sick this morning before he left for the clinic.

And that pretty much brings us up to about 45 minutes ago.

In general, this is a pretty nervous time for us. Technically this is the last day of chemo of the last cycle for him under the protocol he is being treated on. If you want something to pray or send positive thoughts about, it is this. We really want the CT scan results we get in a few weeks to show that the tumor is resectable and we will be a go for surgery and then transplant without having to consider further rounds of chemo. We know how important it is to resect all of this tumor because of the high relapse rate of NB, but we want to do it without further chemo. There are risks to prolonged high-dose chemotherapy and he is already showing some decreased heart function, so we really don't want to go there.

I think I may have set a new record for verbosity in CaringBridge journal entry. As always, thanks for checking in with us and for caring so much for Nathan and our family.

Wednesday, August 6, 2003

Wednesday, August 6, 2003 8:45 PM CDT
Susan here..
Well - Nathan's platelets didn't hit the magic number but his doctor decided he should start chemo anyway. After waiting around for results from his EKG and Echocardiogram we finally got started. His EKG showed some changes and so he was given a medicine to protect his heart and one of his chemo drugs was administrated all at once instead of over 6 hours. We got such a late start that we didn't get out until almost 5:30 after arriving at 9:00 - so it was a LONG day.
Nathan is pretty wiped out but he was very good today. He told me several times he didn't want to be at the clinic all day but he didn't fuss about it. His stiches are much much better so that is a very good thing.
Tomorrow Luke will go with Nathan and he will have a bone marrow aspiration. Everyone expects that his bone marrow is pretty clear but it will be good to know for sure.
This would be his last round of chemo if he stays on plan but it is likely that he will need additional chemo to shrink his tumor further. He will have a cat scan in a few weeks and then we'll figure out if he can have surgery

Monday, August 4, 2003

Monday, August 4, 2003 8:42 PM CDT

Susan here...

Today was busy but good. Nathan had his echocrdigram and EKG and did well with both. We should have the results tomorrow. They are just making sure his heart is doing OK before he starts the next round of chemo. He has had a little damage from orevious rounds but is still in the low side of normal as far as function.

After the tests we had some time to kill and so Nathan and I went out to lunch. I just assumed his immunity was OK. We went to the clinic afterwards and his counts are finally all the way up. His platelets were higher than expected and might actually be up enough to start chemo on Wednesday as scheduled. We will go in Wednesday morning and see if he can start then. If not he will start on Monday.

His stiches are looking alot better. He will finish his antibiotics and see how it looks then.

Tomorrow we will go do something fun since if he starts chemo on Wednesday it will be his only chance this round.

For some of you who don't know Nathan..he loves construction equipment. He knows what everything is. Anyway the highlight of his day was that there was a "ditch witch" parked in the parking lot of the clinic. It is a small tractor with what looks like a big saw on it. He talked about the saw truck the rest of the day.

Sunday, August 3, 2003

Sunday, August 3, 2003 3:23 PM CDT
Susan here..
We are having a good weekend. Friday Nathan had a red blood transfusion as well as a platelet transfusion. His counts though a little tiny bit higher are still low enough that he needed to stay at home this weekend.
On Saturday Nathan spent the morning at home with Luke while I took Julia to by shoes (unsuccessfully). He and Luke made chocolate cookies around lunch time and then we spent the afternoon hanging around. This morning we went for a hike and a picnic. There is a beautiful park with hiking trails through the forest and also nice grassy areas with big trees so we had a lot of fun.
Tomorrow Nathan will have his echocardiogram and EKG followed by a visit to the clinic to check his counts. He is due to start Chemo on Wednesday but it is highly unlikely that his white blood cell count and platelet count will have recovered to the proper levels to begin chemo by then. Maybe he will be able to play with his friends this week. That is the one upside to him not making counts.
I have put some new pictures in the photo album and the family page is updated for July as well.