Sunday, June 29, 2003

Sunday, June 29, 2003 9:14 AM CDT
Luke here...No major news since Susan's post on Thursday. Nathan's spirits have been pretty down in this cycle. As his counts have gotten low he is obviously feeling pretty bad. We are hoping his counts and spirits bounce up pretty soon. The last cycle of chemo was a different set of drugs. The immediate side effects were a little worse with that one, but he didn't get as low as he does with the regular set of medications. We haven't been sleeping much. He is waking a lot in the night and needing attention. He isn't violently ill or anything, but he is very upset until one of us cuddles with him for awhile. The cycle is for him to wake every couple of hours. Last night I gave him IV benadryl at about 2:30am and it knocked him out pretty good until morning. Hopefully once he begins to feel better he won't be waking as much. A teenager in the clinic tried to describe how it felt when one's counts are down. The long and short of it was that she just basically felt all around horrible with aches, fatigue, etc. We think he is just feeling very bad and waking needing comfort. Nathan's platelets are low this weekend too so we are dealing with a lot of nose bleeds. I'm sure he will need at least platelets tomorrow and probably red blood cells sometime early next week too.
We should be getting a bunch of tests done between this and the next cycle. Essentially we will be having the full battery of tests that they did at diagnosis. This will give us a clearer picture of how he is responding to treatment and hopefully will give us an idea of when we may be able to schedule his surgery to remove the primary tumor. These tests will be pretty nerve racking. Once we get things scheduled your continued prayers and positive thoughts for positive results will, as always, be greatly appreciated.
We have been blessed to have my parents here for the past month. I don't know if we could get through this summer without the help and support we are getting from our parents. Soon we will be doing a shift change. Susan's parents just got on the road today and are headed here. My parents will head home and Bill and Carolyn will be here in the Springs for July and August.

Thursday, June 26, 2003

Thursday, June 26, 2003 5:13 PM CDT
Susan here...
Nathan had a red blood cell transfusion today. His white blood cell count is down to zero and he is feeling crummy. For the second time in a row his blood didn't arrive at the clinic as scheduled and we had to hang around an extra hour. Exactly what we didn't need today. So we were there from 11 am to 3:30. Between three days of chemo last week and three transfusion this week I have spent way too much time hanging around watching IV pumps count down. Fortunately he won't go in tomorrow. His regular doctor was out. The other doctor isn't quite as conservative and thought he could wait until Monday for a platelet transfusion. I am very grateful for that.
Nathan used to be very independant and play by himself alot. Now he expects people to be playing with him constantly. I guess he has gotten a little spoiled. I can only take so much of playing at a time and then he screams at me to play with him. I feel bad since he can't play with his friends very often so I try to do what I can. Fortunately his grandparents have been doing a lot of playing. It is tiring.

Tuesday, June 24, 2003

Tuesday, June 24, 2003 8:45 PM CDT

Susan here..

Nathan went in for a platelet transfusion this morning. Someone forgot to order the platelets and so we had to hang around until they could get them. He fell asleep while we were there and so was quite cranky when I woke him up to go home.

Even though he had a blood transfusion yesterday he will need another on Thursday. He will likely need another platelet transfusion on Friday. So basically tomorrow is our only day off from transfusion. Since his immunity is low we will be hanging around the house.

Nathan and Julia have been playing a lot in the backyard. It is now equipped with a playhouse, slide, and sand and water table. Also an umbrella for the adults. It has been great to be able to entertain the kids out back when we are stuck at home.

Nathan is big into asking "why" these days. Today he asked his doctor the classic question "why is the sky blue?" His doctor actually had a good answer for a 3 year old - I wouldn't have had a clue what to say.

Monday, June 23, 2003

Monday, June 23, 2003 8:24 PM CDT

Susan here....

Good news today - Nathan's stem cells are clean! It is a big relief to know we don't have to try to harvest again. It doesn't neccessarily mean his bone marrow is clean. They will test that in the next few weeks.

The CT scan of Nathan's sinuses showed that he has sinusitis - all his sinuses are filled. No big surprise there. It also showed no visible bone damage from tumor or any other abnormality in the area which is a big relief. He is on an antibiotic since the sinus area being like that is a big risk for infection. I need to ask the DR some more tomorrow what might be done for the sinusitis itself.

Nathan's white blood cell count is now low as expected. His red blood cell count was very low and so since he needed them today he had to go to the hospital to get a transfusion. He wasn't happy at the idea but did just fine when we got there. We ended up being gone all day and he was pretty tired tonight. He will get a platelet transfusion tomorrow at the clinic. His eating and drinking is not great, but he sustained his weight over the weekend so we will just keep an eye on him.

Pictures from the weekend:

Friday, June 20, 2003

Friday, June 20, 2003 1:36 PM CDT

Susan here..

We just got back from the cat scan. Nathan did great. It was just a Cat scan of his sinuses and took only 2 minutes and so they didn't want to sedate him. We talked about it before we left this morning and he was really upset, but when it came time to do it he did it without sedation. When he comes out of sedation he is cranky and acts drunk and is very wobbly for several hours. So instead he can enjoy his afternoon and we are so happy about that.

He is still feeling sick at night. He threw up in the middle of the night last night. Today he seems fine but isn't really hungry. Since he was without food due to the potential sedation - it was a good thing, but we hope his appetite comes back so he doesn't have to go on supplemental nutrition.

We are back in the clinic on Monday and expect that he will need some transfusions next week.

Wednesday, June 18, 2003

Wednesday, June 18, 2003 10:37 AM CDT
Luke here...Susan had Nathan at chemo yesterday. It went fine. He had some vomiting on the drive home but managed to eat a light dinner and be in good spirits in the evening. We had typical June weather in the Springs and had an impressive hail storm yesterday. There were piles of hail and in some places it looked like it had snowed. Ellie (our dog) was really excited and running around in the accumulated hail after the storm. Nathan and Julia just stood at the storm door laughing and laughing at Ellie. It is so nice that he can have such a hard day and then just giggle away at something that he finds funny. Kids are amazing. I certainly can't turn the corner that fast.

Susan has Nathan in again for day 3 of this cycle of chemo. He will be getting his stitches out this morning from the second broviac placement. That should be exciting. He still freaks about things like dressing changes of the site on his chest, so I'm guessing he'll have a pretty good fit over getting those stitches out.
Thanks to everyone for sending birthday gifts, cards, and wishes. Nathan really enjoyed them all.

Monday, June 16, 2003

Monday, June 16, 2003 7:04 PM CDT

Susan here...

A long day in chemo today. We were there from 9:15 until 5:00. Nathan was very good as usual. I brought his wooden train and set it up on the floor for him and we also played with many other things. He is very tired now. Tomorrow will be harder I imagine. The doctors and nurses at the clinic sung happy birthday to him and gave him some matchbox cars.

Today they collected some urine to use in a test that detects levels of neuroblastoma. He had this test on diagnosis and decided to submit it again. The protocol here in this town is to collect it for 24 hours which would have required a catheter. Fortunately his DR. just moved here and they didn't always do it that way where he used to practice and so he convinced the lab to take a spot sample instead. I was very thankful for that.

Saturday, June 14, 2003

Saturday, June 14, 2003 3:38 PM CDT
Susan here...
Nathan had a great birthday party today. We had beautiful weather and the kids had lots of fun playing outside. We were so lucky that he was able to have a party with his friends while he was feeling good and his counts were up. Check the photo album for some more birthday party pictures.

Friday, June 13, 2003

Friday, June 13, 2003 11:27 AM CDT
Luke here...Just got word from the BMT folks in Denver at TCH with the final stem cell collection numbers. The goal was 8 to 10 million and we got 8.7 million. The doctors are happy with that. A sample is being sent off to a lab in LA that will do a study that will tell us if the cells are clean (no neuroblastoma). Our oncs here in the Springs and at TCH all think it will be clean based on his response to treatment, but doctors aren't the type to give guarantees.
We will be celebrating Nathan's birthday tomorrow with some of his little friends. It should be a good time. He is feeling well. His counts have been up a little longer than usual between chemo cycles since we delayed a little to do this stem cell collection. He will start cycle four of chemo on Monday (his actual birthday). Monday through Wednesday will be chemo. Friday he will have a CT scan of his sinus area. He has had a runny nose since diagnosis/treatment began and the doctors want to be able to rule out infection or tumor as a cause. Many of our neurblastoma parent community at ACOR (a listserv) report that their kids had the same symptoms during treatment and that they turned out to not be infection or tumor, so that is encouraging.

Wednesday, June 11, 2003

Wednesday, June 11, 2003 5:00 PM CDT
Susan here...
We are back from Denver. We ended up staying over last night so we couldn't update.
Tuesday morning we left for Denver at 6:00 am and got to the hospital by 7:15 even though we were told to expect a 2 hour drive. At 8 we went to the blood center and they had to do all his labs. He got started on the machine at about 9:30. Midway through they tested to see how many stem cells they had collected so far. It was a good collection and so they asked us if we wanted to keep on going until 6:00 pm to maximize the amount we could get. We agreed and so we decided to stay in Denver for the night. Nathan was so good. He was in the bed attached to the machine from 8am to 6pm and didn't fuss the whole time. He had a 2 hour nap in the afternoon. I ran out to Target to get us some things to stay over. They collected 6.4 million stem cells on Tuesday with a goal of 8-10 million. Today we started around 8:00 and were done at 1:30. They estimate a total collection of about 9 million. We will know tomorrow what the actual count was. He will need only about 5 million for the stem cell transplant but they like to have extra for future transplants or supplements if needed.
He was very good today as well. We were so impressed by him.
He won't go back to the clinic until he starts chemo on Monday but he may have a cat scan of his sinus area on Friday. His nose has been running since diagnosis and we can't figure out why. He also has some swelling and slight briusing of his right eye which is something he had at diagnosis and so we are concerned about that. We already know he has cancer in those bones around his eye but it really should be receding now.
We will celebrate his birthday on Saturday. We don't know exactly what we are doing. We may have a few of his friends over but try to keep it fairly small.
The people we worked with at the blood donor center at Denver Children's Hospital were great. We have been so lucky with Nathan's doctors and nurses.
We'll update tomorrow.

Monday, June 9, 2003

Monday, June 9, 2003 10:13 AM CDT
Luke here...Not much to write. I realized we hadn't added anything since Thursday and figured I should add something so people keep coming to the journal. It was an uneventful weekend. Nathan's counts are up so he is feeling pretty good. Friday he got to play with some friends and go to lunch with all his little buddies at the food court at the mall (Don't tell his oncs) and had a good time. He played outside a lot and in general had a good weekend. Susan and I both got out this weekend too which is good for us. Thanks to Erik, Daelyn, Max, and Mindy for their efforts to get us out of the house.
This morning Nathan will go in for his counts. There may be a need for either a red blood cell or platelet transfusion. If he needs red blood cells there is a chance he would need to get that transufion late in the afternoon at the hospital because they can't get them that quickly at the clinic. We'll just have to see. Tomorrow we will be in Denver for the first day of stem cell harvest. It should just be a long day of Nathan hooked up to the machine and basically confined to a small area. Hopefully books, toys, and videos will keep him well enough occupied. We'll be doing at least two days of harvest and hopefully only two. He'll then have a pretty free weekend and start cycle 4 of chemo on Monday. Since he will be starting his chemo cycle on his birthday, we will celebrate that sometime this weekend.
That is it for now.

Thursday, June 5, 2003

Thursday, June 5, 2003 9:40 PM CDT
Susan here...
We went to Denver today to Children's Hospital. We were expecting a quick appointment with the Doctor but got a 1/2 hour meeting with the social worker and 2 hour consult and tour with the head of the Bone MArrow Transplant center. He gave us so much information and I will try to summarize.
As far as the stem cell harvest goes we will go in at 8:00 am Tuesday morning. He will be in a private room with a dvd/vcr combo and TV. We will bring him some toys too. They anticipate it taking 4 hours or longer if they need to do a blood transfusion first. They will use his Broviac and run his blood into a machine where it will remove the stem cells and then transfuse the blood back into him. They will run 4 times his blood volume through it and then see how much they got. They anticiapte it taking 2 days to do the collection. They make sure to collect extra in case of any problems (bags breaking etc) and also in case he needs some more stem cells later. NAte will be an outpatient so we will go home and come back in on Tuesday.
We talked a bit about the stem cell transplant. First off we met with a social worker. She talked about lodging and other logistical things. She told us he would be in the hospital for a month and then need to stay in Denver for 2 more months. We were shocked by this - but when we talked to the DR later he said we could work things out between our doctors and them and that he would probably only need to be in Denver for a couple of weeks after discharge. There is an apartment building just for transplant families to live in after discharge where we can stay (and Julia too). During the transplant while Nathan is hospitalized we will stay at the Ronal McDonald house. Julia can be there with us too. We don't know how much we will have her with us but it is a relief to know it is an option.
He showed us the transplant unit and offered to take us in if we wanted to get scrubbed up and gowned but we didn't feel the need. It is a sterile unit with hepa filtered air. Inside the unit there is a plaroom and a family room. It is nice to know there will be a safe sterile place for him to be able to be besides his room during his transplant.
We really like the doctor. He went to Northwestern University for his undergraduate degree so Luke was happy about that. He talked to us about some of the next steps we might take if NAthan's treatment doesn't go as planned. We have known about some of these things but NAthan's doctors haven't really talked much about them. We feel he will be a good resource later on as well as a good doctor for Nathan's transplant.
Nathan was very very good. We left home and noon and retuned at 6:30 and he didn't cry but once, when he fell down. He was very well-behaved and played nicely for a long time while all the talking was going on. He wasn't at all intimidated about being in a different clinic and hospital with different doctors. We are so impressed with him.
The hospital seem to have really nice ammenities for everyone. It would have been nice to be close to go there for everday care. We are lucky to only have to drive 15 minutes or so to go to the clinic as often as we go so we are not complaining.
His counts were very good. They faxed them to his Doctors here and they called and said he doesn't need to bother coming in tomorrow. So - hopefully we will go play with his friends tomorrow instead.
That's it for now!

Wednesday, June 4, 2003

Wednesday, June 4, 2003 5:52 PM CDT
Susan here - Nathan went to the clinic this morning. His white blood cell counts are on the way back up already. This means we finally have a plan for the Stem Cell harvest. He will start it next Tuesday. After we see the doctor in Denver tomorrow we will have a better idea about the procedure.
It is possible but unlikely that he will start chemo on time the following day. Most likely he will start round 4 of chemo on Mon. the 16th (his birthday) We will plan to have his birthday party on Sat or Sun.
He did need platelets today so we left and played at the park for a little bit until they were delivered and then went back and he got them.
We'll update later tomorrow about our Doctor's visit.

Tuesday, June 3, 2003

Tuesday, June 3, 2003 1:58 PM CDT
Susan here...
Yesterday Nathan went to the clinic. His counts are down (but not all the way down yet) and he got a red blood cell transfusion. He was the only patient in for treatment and so at lunch time the nurses and Nathan and I went outside to have a picnic lunch. It was a nice change in scenery and we all enjoyed it. He was enjoying himself anyway playing cars on the floor of the clinic while he was getting his transfusion.
He goes back in on Wednesday to get his counts taken and we also anticipate he will need platelets. We are still trying to work out the mess of getting his stem cells harvested. There has been much calling back and forth between doctors. Fortunately we will be going up to Denver ourselves on Thursday so hopefully we can get things figured out. We are anxious for Nathan's counts to get down and start coming up so we can get the show on the road without delaying his chemo too much.
We can tell he isn't feeling great today and is somewhat cranky but we are always amazed by how happy he is. We had a neighbor girl stop by and want the kids to go out and play. She is 10 or so. She saw Nathan and asked why he didn't have hair and so I told her he had cancer. She got pretty upset and I felt bad for putting it so bluntly but I guess it really is just a fact of life these days. She asked if he was going to die - that was the first time anyone has asked that. I told her that I didn't know but that he was undergoing treatment and doing well.

Sunday, June 1, 2003

Sunday, June 1, 2003 10:49 AM CDT
Susan here...
Nathan is having a good weekend. Today he really wants to go somewhere and play and we really can't let him. Luke is about to take him for a walk in the backpack carrier and he is happy about that.
He is thoroughly enjoying having his Grandpa Mike, Grandma Kathy and Aunt Annie visiting. We are too of course!
I just wanted to let you all know we updated our family web page. Go to the link below and click on May.(see pictures below)