Thursday, July 31, 2003

Thursday, July 31, 2003 8:54 PM CDT

Susan here...

Nathan went to the clinic this morning. His white blood cell counts are still low (up to .2 from .1) a long way to go until he has some immunity but it should happen soon. He needs a red blood transfusion tomorrow and we'll see what his counts are then.

He'll be having an echocardiogram and EKG soon. They forgot to schedule it and he must have it before the next round of chemo. That is scheduled for next Wednesday but it doesn't seem like his counts will be high enough to start then.

He is on IV antibiotics now for his broviak insertion site. The stitches are still inflamed. At this point it is still unclear what they are going to do about it. I imagine he will go back and see the actual surgeon soon and they will figure something out.

He is also in extreme pain when he has a bowel movement. This happens every time his counts go down and he screams in pain. It is awful.

He is back taking baths again. He hadn't had one since diagnosis after he got his broviak and then he was afraid. We convinced him that it would help his bottom (which it does when his counts aren't low). Anyway we wrap him up in saran wrap and an ace bandage and don't fill the bath very much. He tells me that saran wrap is also used for food. It is so nice for everyone that he takes baths now because he always has fun and Julia is very happy to have him in with her again.

Right on schedule this time I have updated our family pictures. Follow the link below and click on July. It wasn't too hard because we weren't very good about taking very many this month.

Wednesday, July 30, 2003

Wednesday, July 30, 2003 2:59 PM CDT
Susan here
Nothing much going on. Nathan will go to the clinic tomorrow morning to get his blood tested and for them to look at his stiches. We don't feel they have gotten worse but they are not better either. He is having a good day so far and I dare say he seems to feel a little better. I hope this means his counts will be up somewhat tomorrow. Who knows if he will need a transfusion. I am hoping not but a suppose there is a good chance he will.
The weather has finally cooled down here and we are much more comfortable. I took Nathan and Julia for a ride in the wagon this morning and it was nice to be able to do that without frying.

Monday, July 28, 2003

Monday, July 28, 2003 8:27 PM CDT

Susan here...

Sunday was a pretty good day. Nathan was quite tired. We tried to go for a hike but he was too tired to walk. About 9:00 pm he woke up with a major nosebleed. After about an hour it stopped.

This morning we called the clinic to get him in early enough to check his platelets and they were back low again even though he was transfused on Friday. They gave him another transfusion this afternoon. He has to be premedicated with benedryl and that put him to sleep. When he woke up he was very cranky and out of control. I finally got him out of the clinic and we had to go to the surgeons office to have them look at his stiches on his catheter. The surgeons want them to stay in and his Oncologist wants them out because they are very irritated and causing him pain. The surgeon's nurse looked at it and called the surgeon and he said under no circumstance could he have them taken out and so we are to do daily bandage chages with neosporin to hopeful help the site. We'll see how it goes. Meanwhile it hurts him every time we change the bandage or accidentally push on the area so it won't be fun.

When we got home he went and played outside and was in a pretty good mood the rest of the evening - so that was nice. He is still very neutropenic so we are still stuck at home.

I find myself wishing I could write more you all of you but I am too tired to think very much right now. I'll have to have Luke write the next update so it is more interresting for you!

Saturday, July 26, 2003

Saturday, July 26, 2003 9:20 AM CDT
Susan here..
Sorry for the delay in updates. We have been getting almost no sleep but last night was much better and we are all feeling ok this morning.
We went in on Thursday for blood counts and Nathan's counts were all headed south - which is good. He was scheduled to go back in yesterday for a red blood transfusion and possible platelet transfusion. Around 8:45 yesterday morning his nose started to bleed and bled heavily for 3 hours. We called the clinic and they ordered him platelets and Luke rode in the back seat holding kleenexes to his nose all the way there. He finally go his platelets around noon. The clinic had run out of tubing to run blood products through and they had to run and get some. He got red blood cells as well and felt much better. He even napped there since they had to give him benedryl for his platelets and that made him sleepy.
His white blood cell counts are almost at zero. We are hoping they may start up again by Monday but we really have no idea.
His new broviak's stiches are irritated and possibly a little infected. This is very frustrating because the surgeons really want his to keep these stiches in but his doctors this they will have to come out - probably next week because they are so irritated. So we will see...
So this weekend he is very neutropenic and will be housebound for the most part. We may go for a little walk or hike.

Wednesday, July 23, 2003

Wednesday, July 23, 2003 10:22 AM CDT

Luke here. Very little to report. We are in the slow period following chemo and with little planned as far as procedures or tests between these cycles. As Susan's last post indicated, Nathan's counts were still good on Monday and we will be going back on Thursday for counts and expecting transfusions on Friday. There are telltale sings now that his counts are falling. His nose is starting to seep some blood which likely means his platelets are falling. His spirts remain good. He is, as Susan put it, "a little green" in the morning. We give him his anti-nausea meds before he gets out of bed and he hasn't had any serious vomitting this week. He is eating okay. Sometimes he gorges on a big meal, other times he seems to have no appetite. We are hoping to keep his weight and nutrition up so we don't have to put him on supplemental nutrition. He had lost more weight than we had expected before Monday, but I think he will hopefully hold even now and start to creep back up. He has been playing hard with quite a bit of energy which is both good and bad. It is great that he can forget about all the stuff going on and play all out, but I think he gets over tired doing so with his body being beat up by the chemo drugs. He gets very cranky in his down times. All in all he continues to do great though. We'll let everyone know how his counts are tomorrow.

Thanks for continuing to visit the journal. We often check the counter on the page. It is interesting how closely people are following. There was an explosion of hits around the time of start of chemo and his surgical consult. I'm often surprised at how many people check the journal and how often they do so. Please continue to sign the guest book from time to time. I still check it almost every day and I know Susan does too. Knowing you are visiting and reading your words of encouragement are very important to us.

Monday, July 21, 2003

Monday, July 21, 2003 7:40 PM CDT

Susan here...

This morning Nathan got sick upon awakening but rebounded and had a good day. He went to the DR this afternoon and his counts are still good. They haven't gone down yet which is expected with the type of chemo he had lst week. His blood counts were good enought that he doens't go back until Tursday and we think that Friday he will have transfusions.

On Saturday we changed Nathan's dressing around his catheter. After we were done Julia found and alcohol wipe and brought it to Luke and laid down ready to have "her dressing" changed. He obliged and pretended to do hers too.

I would write more but I am being harrassed by Julia to read to her.

Saturday, July 19, 2003

Saturday, July 19, 2003 11:34 AM CDT

Susan writing..

Nathan is finally done with round 5 of 6. He is a little sick but not too bad. He wanted to go to the park this morning and he had fun but got tired and hot fairly quickly.

Monday afternoon he will go get his blood drawn and we expect he might need a blood transfusion on Tuesday. We expect transfusions to be the only thing going on for Nathan next week. He will probably have a bone marrow aspiriation done in the next few weeks and may have another CT scan done too.

We will probably mostly hang around the house this weekend. Everyone but Julia is quite tired.

Thursday, July 17, 2003

Thursday, July 17, 2003 9:16 PM CDT

Susan here

Nathan had a good day today. He hasn't gotten sick yet. We met the surgeons and they probably want to wait to operate until after his last round of chemo because the tumor is still shrinking at this point and right now it would be a difficult surgery. They will talk to Nathan's doctor and his doctor will also consult with the transplant doctor, but it doesn't look like the surgery will happen for at least 6 weeks.

I'll have to let Luke write the next update so there is more to read - I am to tired to write too much tonight.

Overall - a fine day and the surgeon's appointment was pretty much what we were expecting so we'll just keep plugging away and hope the tumor keeps getting smaller.

Wednesday, July 16, 2003

Wednesday, July 16, 2003 7:47 PM CDT

Susan here

Nathan finally started chemo today. He had a good day. They had some construction trucks a nurse had brought in and he played with those a whole lot. I had bought foam mats to put on the floor so he layed on the floor and played with trucks most of the day. He is very tired this evening but not yet nauseous. That should occur tomorrow.

We have our consultation with the surgeons tomorrow afternoon. Luke is doing chemo with Nathan tomorrow and I will meet them for the consult.

He had to have his dressing changed on his catheter today again. We are struggling to keep it nice and tight in the hot weather. He expects a present every time he gets his dressing changed and so that is getting hard. We are having to give him small things so we aren't overtaken by toys. He is much less scared about the dressing changes now so that is worth it.

I am just so relieved to have finally started chemo again so we can move forward.

Tuesday, July 15, 2003

Tuesday, July 15, 2003 8:31 PM CDT

Susan here

Nathan's surgery went well. He came off the anesthesia pretty horribly and managed to pull the new broviak some, but only uncoiled the external loop which is supposed to keep the device itself from pulling out and so we had to hang around for an extra hour while we waited for the surgery nurse to come back and re-do his dressing. Tonight he has a chest full of tape and we are hoping it will hold while he is on the IV tonight.

As usual he was a very good sport about everything.

Tomorrow we will start chemo finally(fingers crossed).

Monday, July 14, 2003

Monday, July 14, 2003 1:11 PM CDT

Susan here...
Well - chemo is delayed again. This time because Nathan's broviak is pulling out and must be replaced. So he will have surgery tomorrow and start chemo on Wednesday. It has been very hot here and so it is hard to keep his dressing sticking to him. We hooked him up to fluids last night and so it got pulled during the night as he slept. We can't get the surgeon we prefer to do it (long story) so that is disappointing as well.
Nathan's platelets are just fine though - so we will start on Wednesday.
Thursday we will have a consult with two of the surgeons about his tumor resection. We will just go straight from chemo to do that.
Despite all the change in plans, Nathan is having a very good day and is just rolling with the punches. He knows his broviak needs to be replaced and he will not have chemo for a few more days and he is fine with that.
His surgery should be straightforward but it is always a little scary. Fortunately it will be at 8:30 am so we can get it over with.

Friday, July 11, 2003

Friday, July 11, 2003 2:28 PM CDT
Susan here
Not much going on today. I wanted to let you know I finally have completed the family web site June pictures. There is a link to that site below.
Nathan seems to be feeling good today. He was vey cranky yesterday and now today it is Julia's turn to be cranky. Fortunately they are both currently asleep!

Thursday, July 10, 2003

Thursday, July 10, 2003 2:39 PM CDT
Susan here..
We went back to the clinic this morning and Nathan's white blood counts jumped way high after the nuepogen and his platelets are gettng better so chemo will start on Monday. I talked to his main doctor about the surgery and he is going to get us a meeting with the pediatric surgeon to talk about whether the tumor can be removed yet. Everyone who looks at his cat scans thinks that at this point his kidney would have to be removed with it. Going through the stem cell transplant with one kidney is harder to recover from. On the other hand there are risks to doing the transplant before removing the tumor in that it may not be as effective at getting rid of the cancer if the transplant is done with the tumor still in place. We are very happy to have this meeting though so we can start to examine all our options so that when the time comes for possible surgery we will be able to make a decision quickly if needed.
So - Nathan should be feeeling good this weekend and we will get out and about and enjoy it while we can

Wednesday, July 9, 2003

Wednesday, July 9, 2003 4:15 PM CDT
Susan here..
I went yesterday and got the CD of all Nathan's test and so I glanced at his CT scan from Monday and I could tell it was smaller. The official report we got today has it down to 5 cm by 3 cm - this is down from about 8cm by 8 cm so that is good news. We are trying to figure out when it will be removed. Nathan's doctors seem less concerned about that than we are and so we are trying to get some different opinions (not formal second opinions or anything). We hope to get a surgeon to look at it very soon to give us an idea when it might be ready to be removed. Our doctors say it might not even be removed until after the stem cell transplant but Luke and I don't feel comfortable with that.
Nathan's platelets were still too low to start chemo (as we expected) His white blood cells are still low too and so he was given Neupogen to help bring them up. The doctor we talked to today thinks he will not be ready for chemo until Monday but we will be back in tomorrow to check his blood counts and will talk to Nathan's main doctor (who was out this morning) and see what he says.
So - it seems chemo will be delayed a week - which is somewhat disappointing because we really want to just keep the treatments going to get through all this.

Monday, July 7, 2003

Monday, July 7, 2003 5:56 PM CDT

Susan here..

Long day today. We got to the hospital at 7:45 and found out both tests were mistakenly scheduled for tomorrow. The echocardiogram was squeezed in and they rescheduled his cat scan for 2:00 pm. He did well in his echocardiogram. Afterwards we went out for brunch and then to the clinic. His blood counts were low. His platelets were 29 (they need to be 75 to start chemo) and his white clood cell counts were low too. When we were at the clinic on Thursday his counts were higher due to count boosting medication. So basically he was low all weekend and we didn't know it. It does explain his not feeling great though. This isn't a big surprise because after so many rounds of chemo his bone marrow is having a harder time recovering from chemo. So - he won't be starting chemo tomorrow. We will check his counts on Wednesday but aren't very optimistic about them being up by then. We'll check again on Friday and if they are up then we will have to decide whether or not to put him in the hospital so he can start of Friday instead of waiting until Monday.

After the clinic we went back to the hospital and waited for 2 hours for his cat scan. Why they wanted us there at noon I'll never know. We had to give him oral contrast at 1:00. It is 120 ml or white stuff he has to drink. He fussed about it but we coaxed it all down him a little at a time. We were sitting in the waiting room the whole time and so everyone else was subjected to kids TV and Nathan's crying over the contrast. Next time we will hopefully do it at our usual outpatient place which is MUCH better. He did SO GREAT in the cat scan. He layed down and was very still for about 10 minutes while they did it and wasn't even very scared. Luke and I sang to him the whole time. Afterwards we went and got ice cream and then came home and he wanted a grilled cheese sandwich and is doing just fine.

His doctor will likely call tomorrow with the cat scan results. We will of course update the journal when we hear something. His doctor wrote up a prescription for the hospital to put all his cat scans on a CD for us. I may run over and get that tomorrow. I have seen the images from the first two but Luke has not.

So - that is the news for the day.

Susan

Saturday, July 5, 2003

Saturday, July 5, 2003 9:54 PM CDT
Luke here...Little to add from a medical standpoint. Nothing new since Susan's Thursday post. We had a good 4th. We got out in the morning and ran some errands. After the kids naps we had some good friends over, grilled out, and had a very good time. Today was another busy social day. One of Nathan's friends had a birthday party. We had a good morning.
Nathan is doing okay. I would guess that others are very surprised by how well he is. For us though we can tell that he just hasn't gotten all the way up to where he feels well enough to truly be and feel himself this cycle. He doesn't feel horrible and he is still having fun and playing, but something just isn't quite there. It is hard and he won't get all the way there as he starts the next chemo cycle on Tuesday. Don't get me wrong. He is still an incredibly strong little boy and doing very well, I think he may just be getting understandably tired.
As always, thanks for your continued support. We'll continue to keep you all updated.

Thursday, July 3, 2003

Thursday, July 3, 2003 2:03 PM CDT

Susan here

Nathan went in for his blood counts and they were good. His platelets are low but the doctors feel as if they will come up on their own since his other counts are climbing so no platelet transfusion today. One of his playgroups was meeting nearby and so we stopped in after his appointment and he played for a while.

He will have a cat scan of his abdomen and an echocardiogram Monday morning and start chemo on Tuesday.

We hope to have a fun weekend for Nathan while he is feeling good.

Tuesday, July 1, 2003

Tuesday, July 1, 2003 1:03 PM CDT
Susan here
Nathan went to the clinic yesterday. His white count was back to .3 - which is still neutropenic but on the way up. He was down to almost no platelets and his red blood cells were low too. I was given the option of doing platelets yesterday and red blood cells today at the clinic or to do them both yesterday at the hospital and so I chose to do the latter to get it over with so Nathan wouldn't have to do two days in a row. He was very good. We were at the hospital from 1:00 to 6:30 and he behaved so well. We got his urine test results back and one of the tests was in the normal range and the other just a tad above normal. These test show certain chemicals that are produced by neuroblastoma and so it is good news that these chemicals are almost normal.
He will go back in on Thursday for blood counts and probably platelets again. They are trying to schedule his cat scan and echocardiagram for either tomorrow or Thursday. No word on that yet.