Friday, May 30, 2003

Friday, May 30, 2003 5:25 PM CDT

Susan here..

Nathan went to the clinic this morning and his immunity is lower but not in the low spot yet. His platelets were quite low and his red blood cells were low too. He will have a red blood cell transfusion on Monday. He had a platelet transfusion later in the morning today. Unfortunately when he was done I got him to the car and noticed he was breaking out in hives so I took him right back up to the clinic and they gave him benedryl and steroids. We were there another 2 hours for him to get over it. Since he had an allergic reaction to the platelets today they will have to premedicate him always in the future to make sure it doesn't happen again.

We talked with the nurse practitioner about the stem cell harvest (I incorrectly called it a rescue yesterday - that is the part when they give it back to him - this is the part where they remove the stem cells). She told us that the other doctor's plan for Nathan was not all that different (as Nathan' DR had told us) and that it will be an outpatient procedure (also not what we were previously told) I got pretty frustrated about this and also the fact that we wouldn't meet the other doctor until the day before the harvest and so we will meet with him on thursday in Denver to be able to get an authoritative answer to all our questions. So anyway - it is good news that he won't have to stay in the hospital for it and also they think they will most likely be able to use his central line to get the stem cells instead of putting a different temporary catheter in him.

The hives episode was kind of hard on him, but other than that he has had a prety good day. In between our initial visit to the clinic and going back to get the platelets we went to a nearby park and he played a little. He is eating fairly well and we can take him off the supplemental nutrition during the day. Hopefully he will fell well enough this weekend to play outside a little and have some fun. We will be keeping him home since his immunity ought to be low by then.

Have a good weekend. We may or may not update in the next few days.

Thursday, May 29, 2003

Thursday, May 29, 2003 8:43 PM CDT

Susan here..

Well - as we expected Nathan will be treated by different doctors for his stem cell rescue and transplant. Unfortunately they do things differently and so according to their plan Nathan's immunity needs to come up first, then he needs to be off the immunity boosting drug (neupogen) for 2 days and then back on it for 4 days and the next day they do the rescue. They are hoping for him to be off of it by tues and then on it for Fri Sat Sun and Mon and then the next day (June 9)have the rescue. The only problem is we don't know how many days the rescue will take and he is due to start chemo on Wednesday. If he is still in Denver he will have to start late and that may mean puttin ghim back in the hospital so he can have it all weekend. Otherwise we would have to wait until Monday June 16 (Nate's birthday) to start the next round. We hate to put it off like that. If his immunity doesn't come up by Tuesday I don't know what they will do because that will really put him behind.

He seems to be feeling alot better today. He has eaten pretty close to normally and done alot of playing. He skinned his knees pretty hard playing outside this evening. One mysterious thing is that all of a sudden he is not hearing very well. It could be the chemo or maybe just congestion. We will ask his doctors about it tomorrow.

Well - off to enjoy some of my evening.

Wednesday, May 28, 2003

Wednesday, May 28, 2003 9:42 AM CDT

Susan here...

Well - we went to the clinic yesterday and were surprised to find out his blood counts were all good. His white blood count was low on Friday and so we thought it was on its way down but apparently not. So we are a little frustrated that we kept him at home all weekend when we could have gotten out a little. We will expect it to be down on Friday when he goes in next.

He didn't throw up at all yesterday and drank milk and ate stew and meatloaf - so hopefully his nausea is on the way out. He did lose 2 pounds and so he is on supplemental nutrition.

We are going around in circles with the insurance company figuring out where and who will perform the stem cell rescue and transplant. It is long and complicated but the bottom line is Nathan's doctors want to harvest his stem cells early next week no matter what and so the insurance issue has to be settled soon. It may be have to be done by another group of doctors in Denver that don't know Nathan. So he will have is stem cells rescued even though they will not know if his bone marrow is clear of cancer. They will test it after they take it and see. If it is not clean enough they will save it and harvest again. The longer they wait to do the harvest the more "tired" the stem cells get and so they really want to be able to use the ones they get next week. So we will just have to wait and see what happens. We should know tomorrow morning the who and where of the rescue and can begin planning for next week.

We will update tomorrow.

Monday, May 26, 2003

Monday, May 26, 2003 11:25 AM CDT
Luke here...I hope you are all enjoying your Memorial Day. There really isn't too much news beyond what Susan wrote Saturday morning. Last week was a long one, but we aren't too much worse for the wear. Of all of us, Nathan is probably the one holding up the best. We had expected this cycle to be horrible on him based on accounts from others that have gone through this. It hasn't been so bad. Nathan has had an appetite, which is great since a lot of kids don't with this chemo drug. He has had more vomitting than with previous cycles, but nothing terrible. He holds down some meals and doesn't others. There doesn't seem to be rhyme or reason. He does have a disturbing habit of vomitting onto his plate (sorry if that is too much information), but no big deal. He handles it really well too. He doesn't seem to have a big hang up over it. He just goes about his business and then returns to whatever held his attention. Last night he vomitted at the dinner table. We cleaned him up sitting at his high chair and when we had a new shirt on him he said, "Can I have some more rice please?".
All in all things are going okay and we are having a pretty good weekend. I'm working to make up some hours missed during this past hectic week. Susan's parents (Grandpa Bill and Grandma C) are still here and being a huge help to us. Having grandparents here is very important to Julia when she is feeling neglected by Susan and I. Bill has also taken on a bunch of projects around the house and been a huge help on that front. He has knocked off some projects we have wanted to tackle literally for years. We will do a grandparent shift change this week with Bill and Carolyn heading back to South Carolina and my parents (Grandpa Mike and Grandma Kathy) coming into town. We also get to have a brief visit from my sister Anna (Aunt Annie) too.
We don't have a set schedule for next week. Nathan will be in the clinic for counts tomorrow. We know his immune system is already down. I'm guessing he will need red blood cells, platelets, or both on Wednesday. After that we will be waiting for his counts to come up and hoping he doesn't get fever or infection.
We will be throwing kabobs on the grill this afternoon. I'm looking forward to a couple of beers around the grill and a good meal with family. I hope you all have had a good weekend.

Saturday, May 24, 2003

Saturday, May 24, 2003 7:42 AM CDT

Susan here...

Yesterday we were at the clinic from 9 - 5:30. LONG day. There was a mix-up at the blood bank and he didn't get his blood until late. Nathan did really well and didn't ask to come home once. He even took a two hour nap. After his nap he did throw up and also threw up in the car on the way home. He was really good and held the throw up tub all the way home. He was fine the rest of the evening. He is not eating however.

We got some more good news. The bone marrow in his left hip which was 100% cancerous at diagnosis, 60% cancerous after round 1 is now 10% cancerous after round 2. The doctors are hopeful that this current round 3 will clear it up enough to harvest.

This morning Nathan woke up feeling a little sick so he got his anti-nausea mediciation in his bed and seems to be feeling well now. We are not really expecting him to eat much this weekend and he is expected to start supplemental nutrition on Tuesday.

I got to see the cat scan images yesterday. The doctor gained access to the hospital's database at his office. If we bring a CD he will actually burn us a copy. I was not ready to see the image at diagnosis but it was interresting to see it this time. I got to look at both scans side by side. It is hard to imagine that tumor inside him. Especially when he is running around playing.

Today we will probably hang out at home. I think car rides are a little hard on Nathan's tummy.

Friday, May 23, 2003

Friday, May 23, 2003 9:47 AM CDT

Luke here...Yesterday I had chemo day duty, so here is the update. So far, so good. We are very surprised by how well Nathan is handling chemo in general and this round in particular. Wednesday was fine. Susan had him at the clinic. It was a long day for both of them, but he wasn't feeling too bad at home other than being exhausted. Thursday started with a failed attempt at breakfast, so we thought the nastiness was setting in. To our surprise, so far it really hasn't. We had a pretty good day at the clinic. It was slow in the morning so he got lots of attention from the nurses and doctors coming in to chat with him. We played and talked without any television until noon, then watched movies until almost 2:00 and then we both napped until a little after 3:00 when the chemo was done and they did some anti-naseua medications and we were out of there by around 3:45. He snacked and drank a little and held it down. At home he watched tv, played, and ate dinner. He kept dinner down and woke up literally giggling in his bed this morning. We are amazed. He didn't have much appetite this morning, but he ate 1/4 pop tart and has felt fine.

Today is the last day of treatment in this cycle. Susan took him in. It will be a long day. His hemoglobin is on its way down and with nowhere to go but farther down and a three day weekend coming up, they are going to do a red blood cell transfusion after chemo today to try and keep him up through the weekend. We had thought we would have to go to the hospital for transfusion tomorrow, but they are going to do it this afternoon. Susan and Nate will be pretty beat up from a long day today, but hopefully he continues to feel well. If he continues to hold down his food, we may even be able to keep his weight and nutrition up and not have to go on supplement. That would be great. I'm not going to get my hopes up yet. On that front, I had a long talk with the nurse practitioner at the clinic yesterday. They are amazed at his nutrition. Most kids apparently are technically malnourished throughout treatment. Nathan's protein (and some other indicator) tanked when he didn't eat during cycle 1, but they are up in low normal ranges now. They think that is just great.

No news on the bone barrow biopsy yet. Hopefully Susan will get results today. I'm hoping for any kind of improvement. We got tood news on the tumor mass this week and too much good news is too much to ask for. If we see some improvement this time we can hope for big improvement in about three weeks form now once this new set of drugs has had its chance to fight the cancer.

There I go again rambling along. I should post in the evenings when I'm too exhausted to ramble on like this.

Thanks for your continued support. Keep your fingers crossed for us that he continues to handle this treatment so well.

Wednesday, May 21, 2003

Wednesday, May 21, 2003 10:10 PM CDT

Susan here...

Today went pretty well. Nathan is feeling pretty tired today (even before we went to the clinic) he did fine with the chemo. The doctor said it is often a delayed effect with this kind of chemo. So we'll see how tomorrow goes. His new Broviak seems to be doing just fine.

The good news is that Nathan's tumor has shrunk at least 50% and has lots of calcifications which means alot of it is dead tissue. We should be able to see the before and after images ourselves on Friday. We may also get the bone marrow biopsy results on Friday.

Luke is going with Nathan tomorrow and I will hopefully go to playgroup with Julia to give her a sense of normalcy.

We'll update tomorrow.

Tuesday, May 20, 2003

Tuesday, May 20, 2003 8:38 PM CDT

Susan here...

Nathan's surgery went well. He was very good about not getting to eat and drink. He had a bit of a hard time coming off of the anesthesia but by the time we came home he wanted to walk around and play. He is in bed now just chatting away to himself happily.

They managed to put in a Broviak that was bigger than the last one so that hopefully they can use it to harvest his stem cells.

We asked his doctor about the CAT scan and he had seen the report but not the image yet and said that the report shows the tumor is shrinking but he will be able to tell us how much when he actually sees the scan - so hopefully he will tell us tomorrow. The bone marrow results will hopefully be ready by Friday before we leave the clinic.

Tomorrow we are off to chemo. We are prepared for the worst but hoping he isn't too sick from it. It could be a very long 3 days. Luke will go with Nathan on Thursday and I will go again on Friday.

Monday, May 19, 2003

Monday, May 19, 2003 3:21 PM CDT

Susan here...

Nathan had his CAT scan this morning. We went in around 7:00 am and started giving him the contrast that he had to drink. Last time he wouldn't drink it and they had to put a tube through his nose to his stomach. This time we were able to slowly give him the contrast by mouth through a syringe (many syringes full). He was then taken in the room and sedated for the scan. Afterwards he had the hearing test and remained asleep for that as well.

Saturday night when we changed his dressing on his central line we noticed that it appeared it had pulled out somewhat. This was confirmed today at the clinic and he was immediately scheduled for surgery tomorrow to put a new one in. He will have the bone marrow biopsy at the same time. It is outpatient surgery and supposed to be easy to recover from.

We will start his chemo on Wednesday instead of tomorrow now. They can do it in 3 days instead of 4 and so will just condense it so he doesn't have to wait another week to get it.

As far as resutls go - we will get the CAT scan results maybe tomorrow by phone or they might just wait until Wed. when we go in. The bone marrow results I am guessing will be available Friday or so.

So - Nathan did a good job today and it wasn't too traumatic. He is currently napping and tomorrow will be a hard day. He can't eat anything after midnight tonight and surgery will be at 11:00 am so that is going to be rough not feeding him.

We will update you tomorrow after the surgery.

Saturday, May 17, 2003

Saturday, May 17, 2003 7:24 PM CDT
Luke here...Not too much to report. As Susan noted in the last entry Nathan's counts were up very well on Thursday so he didn't need transfusions on Friday like we expected. He has been feeling pretty good so we have been doing a lot of playing and trying to get out some to shake the cabin fever that builds up while his counts are down. We have been having a good family weekend.


Next week looks to be a very busy one. Monday we will be going in very early in the morning to the hospital's outpatient facility. Nathan has a CT scan with sedation in the morning. This is to take a look at the tumor in his abdomen to check in and see how it is reacting to treatment (hopefully shrinking!). After the CT scan he has a hearing exam. His next course of treatments will likely damage his hearing and they need to do a test now to baseline things. Apparently the drugs often do permanent damage to high frequency hearing. After the scan and test it will be off to the clinic for his counts and an exam. If his platelets are up enough (we already know his immune system is up enough) then cycle 3 of treatments will start on Tuesday. If they aren't up, then the cycle won't start until the following Monday. This is a 4 day treatment cycle. So, if his counts are up, he will be getting full day treatments Tuesday through Friday of next week. This set of drugs are new to him and all accounts we get from other parents who have done this protocol are that these are extremely nasty (one parent refers to cycles 3 and 5 as vomit fest). We shall see. Everyone reacts differently. Tuesday he will have another BMA (bone marrow aspiration). His counts shot back up so well that the doctors are hopeful his marrow is pretty clear. The same thing happened last time and they got our hopes up and there was only minimal improvement. We are hopeful, but not getting our hopes too high.
That is the plan for the week. We'll probably update on Monday after scans and counts. Tomorrow will be an uneventful weekend day.
Hope you are all enjoying your weekend.

Thursday, May 15, 2003

Thursday, May 15, 2003 6:20 PM CDT
Susan here...
Nathan had his blood counts checked this afternoon. His white blood cell count is way up and so his immunity is high now. His platelet and red blood counts are fine and so he doesn't need a blood transfusion tommorow. That means he can go play with his friends tomorrow instead of sitting in the clinic! The first thing the doctor said when he saw Nathan's counts was that he wanted to do another bone marrow aspiration ASAP. So he will have one on Tuesday. The doctor is hopeful that is good counts mean the bone marrow may be clean. Of course - they thought that last time and it wasn't and so we are not holding our breath. As I mentioned before he will have a CAT scan on Monday. After that he will go to the clinic and get his blood counts taken to get an idea if his platelet level will be high enough to start round 3 of chemo on Tuesday.
So - we get three days to play and have fun!

Tuesday, May 13, 2003

Tuesday, May 13, 2003 9:44 PM CDT

Susan here...

Nathan went to the clinic for red blood cells and platelets today. We were there from 10:15 to 3:45 so it was a fairly long day. His counts are still on the way up. He goes back Thursday afternoon for a blood count check.

Monday he will have a CAT scan and a hearing test. If his platelets are high enough he will start chemo on Tuesday. He will be getting different chemo drugs this time and they are supposed to make him much sicker and they will also be given over 4 days instead of 3.

So - hopefully Fri - Sun he can get out and have some fun before feeling bad again. My parents arrived yesterday and watched Julia all day today. She was very happy about that.

Nathan is still in a lot of pain in his bottom. It has been keeping him up at night. Hopefully as his counts go up the pain will go away and we can all get some sleep.

That's about it. We are all so tired. Next week will be rough so I am hoping we can get some good sleep the enxt few nights

Monday, May 12, 2003

Monday, May 12, 2003 1:53 PM CDT

Susan here...

Nate went to the clinic this morning. His counts are up - but he still has a low immunity. His platelets and red blood cells are very low and he will be transfused tomorrow. He is still eating and drinking - he has only a few spots in his mouth that don't seem to be bothering him. Unfortunately he is in a lot of pain from constipation and/or sores in his digestive tract. The pain comes and goes with his bodily functions. He is pretty happy when not in pain.

The doctors plan for him to have a hearing test and CAT scan early next week. The hearing test is neccessary because the upcoming round of chemo contains drugs that damage high frequency hearing. The CAT scan will give us an idea how his tumor is responding. They may also do another bone marrow aspiration next week. We will of course keep you updated.

So we'll be in the clinic tomorrow but hopefully not Wed. and by Thursday we hope his counts are up and he can get out and play a little. He may very well need another platelet transfusion by the end of the week. If his plateletes aren't up on their own by next Monday they will have to put his next round of chemo off by a week.

Saturday, May 10, 2003

Saturday, May 10, 2003 9:52 AM CDT

Luke here...Not much today. Nathan had a platelet transfusion yesterday. They still showed a little low post infusion, so it is likely he will need red blood cells and platelets next week. We have standing admittance orders for the weekend in case his fever spikes. We are hopeful we can avoid a hospital stay this nadir, but he could be the type that gets fevers with each cycle. We shall see. Monday we will be in for counts. His spirits are okay. We can definitely tell his counts are down by his activity level and his crankiness, but I would say his spirits and activity level are much better than the first cycle. It is nice to see him handling things well.

We had great help last week from our friends Brian and Lori. After the weekend the grandparent cavalry arrives. Susan's parents, Bill and Carolyn (Grandpa Bill and Grandma C) will arrive on Monday for a two week stay. Right as they depart my parents and sister (Grandpa Mike, Grandma Kathy, and Aunt Aunnie) arrive. Anna will only stay 4 or 5 days and then my parents will be here through June, after which Bill and Carolyn will be back likely for July and August. It will be wonderful to have the help and support that they provide. It will be especially important for Julia who is feeling a little neglected through all of this.

Thanks to everyone for continuing to look in on us and to send cards and letters to Nathan. Getting mail brightens up his day.

Unless we end up in the hospital with fever, there probably won't be much going on this weekend. Don't be surprised if there is no update this evening or tomorrow and we will let everyone know how his counts and exam go on Monday.

Thursday, May 8, 2003

Thursday, May 8, 2003 11:50 AM CDT

Susan here -

We got Nathan's bone marrow test results and they are sort of inconclusive. On his right side, the bone marrow was completely replaced with cancerous cells when we started and is now at 60%. The doctor is unsure if this is active cancer or dead/inactive cancer cells that his marrow hasn't reabsorbed yet. On his left side there was no change and is still around 30-40% cancerous. They will not be doing is stem cell rescue next week since the marrow isn't clean. They will repeat the biopsy before his next round of chemo and see how it is. What else they may do depends on if he is hospitalized in the next few days. His counts are down and so now if he gets a fever he will go into the hospital. If this does happen he may have a urine collection which will be tested. He initially had this test done to provide a baseline and so they would compare results to see if that showed any improvement. They may also do a cat scan to see if the tumor has shrunken. If he doesn't go into the hospital this weekend we will reassess Monday as to what tests he will have when. I didn't get a feel for how likely it would be that this was just dead tumor in the marrow versus active cancer. So - we are disappointed but will have to wait and see - which is very hard to do.

Tomorrow he will have a platelet transfusion. This only takes a half hour or so.

He is more tired today with his counts down. He immediately took a nap after the clinic.

So that's the news....

Wednesday, May 7, 2003

Wednesday, May 7, 2003 12:30 AM CDT
Luke here...Not much to report. Today is Nathan's second day in a row "off" with no visits to the clinic. He will go in tomorrow for his counts and hopefully we get some information about results from the bone marrow aspiration he had performed last week. His spirits have remained pretty high and he has been playing and having fun. We think today that we can start to see signs of his counts dropping with him starting to drag a little more, be a little more cranky, and he is starting to talk about being sick and not feeling well. The relative calm over the last week plus and his handling the treatments last week so well have been a good time for us.
Our friend Brian is still here staying with us and that has been great. The kids love him and he has been a huge help to us taking care of the kids and providing us with a break.

Well, without much to say I'll avoid rambling and call it an entry. Susan has updated our personal pages with some pictures from April. If you want to see the latest set of pictures, follow the link at the bottom of the screen to our pages and then jump to the April page. (see below)

Monday, May 5, 2003

Monday, May 5, 2003 6:45 PM CDT

Susan here...

Today Nathan went in for a blood transfusion. His white blood counts are still up and he is still feeling good. We don't have any test results from the bone marrow and they said we will get them on Thursday. He doesn't have to go back to the clinic until then and so we have two days off! On Thursday they will just do his blood counts. They are expecting him to be neutropenic by then (no/low immunity).

That's all for today!

Sunday, May 4, 2003

Sunday, May 4, 2003 9:43 AM CDT
Susan Here....
We are having a good weekend. Nathan is feeling just fine and playing and happy. He is hooked up to IV fluids to help keep him hydrated after the chemo. He has been good about wearing the fluids and pumps in a little backpack we got him so he can still get around. He is still eating and drinking well too.

Our friends Brian and Lori are visiting this weekend and Nathan and Julia have enjoyed the extra attention. Yesterday we went for a little hike at North Cheyenne Canyon park here in town. There is a waterfall and both kids enjoyed seeing it. Nathan was in the backpack carrier and he thought that was fun. It was nice for all of us to get out for a little hike.

 

 

Tomorrow Nathan will be getting a blood transfusion. He will hopefully get unhooked from the IV as well and he will appreciate that. They will check his blood levels in the morning to see how his white blood cell count is doing. We may also get results from his bone marrow biopsy tomorrow.
I wanted to thank you all for the cards and gifts you have sent Nathan. It really does brighten his day to get them. He now expects to get a letter everyday and so far he does get at least one and he loves it.

Friday, May 2, 2003

Friday, May 2, 2003 10:15 AM CDT

Luke here.

We are in the middle of the treatments for Nathan's second course of chemotherapy. I had him for day 2 of 3 at the clinic yesterday. All in all, Nathan is handling everything much better emotionally. He has gone to the clinic for his treatments very willingly and been well-behaved and cheery and happy there. He has had his occassional fits, but that isn't too bad for a near three year old being forced to sit through 8 hours of medication and other poking and prodding. Wednesday night he felt fine and ate well. He complained some about his tummy in the late afternoon, but no real problems. Yesterday I couldn't let him eat all morning and a lot of the afternoon because he was having a procedure done in the afternoon (more on that later). After the procedure he just wanted to eat and he had quite a bit of food in the afternoon. His tummy was pretty upset in the car on the way home and he did have some vomitting, but he handled it well and ate a little in the evening and then had a very good night sleep. We didn't hear a peep out of him. The chemo really wears him out.

The procedure he had done was a bone marrow aspiration. The took aspirate from one hip and a core sample from both. They are checking the bone and marrow to see how well they have responded to round 1. This will also give us an idea if we can do the bone marrow harvest between courses 2 and 3. Best case scenario is 2 weeks from now his marrow will look pretty clean and he will be having his marrow harvested in the hospital in Denver (probably 1 to 5 days in hospital). I'm a little nervous about these results. This will be the first real indicator as to whether or not he has responded well to the first round of chemotherapy. We could have some results on the aspirate today, but the core results won't be available until Monday at the earliest. We had been nervous about this procedure as other parents online had said that their kids had significant discomfort with the procedure under similar drugs that our docs intended to use. It wasn't bad at all though. They administered a pain medication and an amnesiac and then numbed the areas where they did the procedure. By far the worst discomfort he was in was when they numbed the areas before the procedure. After that, he was fine and pretty loopy from the drugs. He typically comes down from those pretty hard and was upset for awhile after the procedure, but that settled down and all was well.

He is doing amazingly well. It will be tough to see him start to slide after these treatments, but we know that he can feel better when he comes back up based on the very good weekend we just had with him. This is one tough kid.

We'll let you all know how today's treatment went and how he fares through the weekend. We have more visitors on their way in. Our good friends Brian and Lori Shade are visiting from Missouri and arriving sometime today. Nathan always enjoys Brian and Lori, so this will be a real treat for all of us.