Tuesday, September 28, 2004

Tuesday, September 28, 2004 1:06 PM CDT

Hello -

We have some more scan results. The bone marrows are clean. The MIBG is complicated but I will try to explain. The previous MIBG scans were done in New York and were not available for comparison. These previous scans have always shown some uptake near the right kidney which the doctors in New York do not feel is disease. So - until the doctors in New York can compare the two we cannot be assured nothing is going on but since the CAT scan was clean it is unlikely there is anything there.

Luke and I knew that by getting the scans done here we would likely run into some uncertainty in interpreting. We decided it was worth it. Had we done them in New York we probably wouldn't even have any questions about it. As it is it leaves me a little concerned but I am feeling confidant that this is the same area described previously and does not represent cancer.

We are still waiting for the Urine test results.

I hope to be in contact with the doctor in New York in the near future and have him explain the MIBG.

Monday, September 27, 2004 9:25 PM CDT

First off - no new medical news. I expect to be able to get the MIBG results tomorrow. Part of the bone marrow results may also be available.

We had a really good weekend. We all went to the hospital for the MIBG scan and then we left from there to go to the mountains. It was the perfect weekend to go since the Aspens were all at peak color and the weather was 60s and sunny. The scenery was absolutely beautiful. We hung out some after we got there and then went in to town (Grand Lake) and the kids played at a playground and we walked along the lake and had ice cream. The kids slept without a peep and we had a leisurely morning, went for a walk, played outside some and then after lunch we drove home.

Ellie was mad at us for leaving (our neighbors were keeping an eye on her) and she got out of the yard. Fortunately some neighbors caught her and put her in our other neighbor's yard. We knew exactly where she got out because it was clear that she could, but never had. She also left us a smelly present in the dining room when we got home.

Today the kids and I went to a playgroup and then I tried to put them in quiet time but they kept coming out of the rooms. The afternoon went downhill from there culminating in Nathan throwing a huge fit because I told him to wash his face before he got out of the tub. He absolutely refused and I absolutely refused to do it for him. Of course, it had nothing to do with washing his face. We had even had some conversations today about how he has to do the things I tell him even when he doesn't want to. He is just really mad at that fact. He finally washed his face after a good half hour or more when Luke came home and he heard him coming upstairs. He spent that half hour screaming at the top of his lungs. I had to bar him out of the bedroom while he screamed so I could read Julia a bedtime story. He had been warned by Luke that if he was not good while he was gone (playing basketball) that he would get punished when he returned. I guess that is why he finally relented. He got punished anyway since he had already gone way beyond the point of being bad. My voice is hoarse from trying to talk to him over his screams. Anyway.....tomorrow is Tuesday and so the kids will be at daycare. That is probably a good thing for Nathan and I. I had been feeling a little bad because tomorrow is my birthday and I thought maybe I should spend it with them. Now I see that we will have a better day if we don't.

I will update again as soon as I have more test results.

Friday, September 24, 2004

Friday, September 24, 2004 7:39 PM CDT

Hello - I thought I would update sooner but it got away from me. I will try to recap...

To start with all things medical:

Thursday morning Nathan and Julia woke up at 6:30 and immediately the crying started because Nathan wasn't allowed to eat ro drink. He pretty much cried and whined until we left at 7:30. We went to the hospital and after registering and not being able to convince the gy we were not being admitted we were admitted to the PICU. Several phone calls later by the nurse practitioner and the admitted status was fixed (thank goodness because it would have been an insurance mess). They put Nathan in abed and he was quite happy. The intesevists (ICU doctors) came around and one was quite upset that Nathan's procedure was scheduled for 9:00 but then the DR who did the scheduling shoed up and all was well. After much hanging around they finally out in his IV.. The first one did not go in successfully (of course - it always takes 2 pokes). Then the second one was put in and thanks to the Child Life woman it wasn't too traumatic. I took off for a waiting area while they did the procedure and read. Nathan was mad when he woke up because he wanted to leave ASAP. They wanted to observe him a little longer and he threw a huge kicking fit. I think it paid off for him because after about 10-15 minutes of that they said he could go. He was CLEARLY fully awake from the anesthesia by then. We were still wanting to collect his urine because he woke up too early and went in the morning at home but we could not convince him to go at the hospital. We then went to a restaurant where he finally did want to go and managed to get a sample and get pee all over my shirt. We then had to hurry back to the hospital to turn in the sample in the time alloted. We had to re-register at the hospital since the oringial person admitted us and didn't belive me when I told him I would be seeing him later if he wouldn't register me for both things. So at least I got a "told you so" out of it! We went to Nuclear Medicine and got NAthan's MIBG injection and were on our way. Nathan requested a stop at Dairy Queen and so we had some ice cream and then went and got Julia.

I will backtrack real quick to say that Julia was sick all day Wednesday with a fever. It has gone now and no on else is sick *yet*. We are crossing our fingers. Of course, in some ways we sould like someone else to catch it because intermittant unexplained fevers were Nathan's first symptoms so we don't really care for those around our house. Believe it or not, Julia is almost the same age as Nathan was when he was diagnosed!

Today was a better day until the later afternoon. We went in to get his MIBG scan and he did a great job with that. Afterwards we stopped by my old workplace (non-profit day care center) and he went with the kids his age and played and had lunch with them while I talked with my friend and former boss Diane. It was a nice break in the day and good to catch up with her. Then we went to a park and he took the first of his oral contrast doses at noon. He barely complained and was very compliant about it and then played at the playground for the next hour. At one he had the rest of his oral contrast. He didn't want to take it but relented without a fight, just some playfull running away from me and smiling because he knew he had to do it. We went over to get his cat scan and while we were waiting we were told he would have to go back to the hospital tomorrow and rescan for his MIBG. At this point I started worrying some and then when they did his cat scan it seemed to me that they took a while and took an extra scan and I was peering through the glass the the tech's faces and it seemed to me they had worrysome looks. So after that I was pretty upset and Nathan had his IV taken out and we went to Target to buy him a toy as promised. I put a call into his doctor's office and had to leave a message. We got Julia and came home.

Not too much later his doctor called me back and was able to explain that they rescan soemtimes if not enough of the radioactive isotope is excreted from the body and too much is still showing in the digestive track. He said that if they were concerned about something they would have called him. He also got on the computer system and the cat scan report was already entered and it was completely clear. He told me that I had been around doctors and techinicinas enough by now that I can read them all and I would know if something was wrong. So I am feeling a lot better about it all. We are not thrilled about going in tomorrow morning because it changes our plans for the weekend a little but we are all four going to go in together and after we are done we are heading up in the mountains to Grand Lake to my brother's vacation home to visit and we will stay the night.

We went out to dinner tonight and I had a nice big margarita which has helped me calm down from such a stressful end of the day.

On a personal note I am now a member of the church choir. The director of the choir told me I had a beautiful voice and thanked my friend Tonya for bringin me in and so that was really nice to hear and I am excited about getting to sing twice a week!

So - we will be awaiting the rest of the scan results. We will hopefully have at least the MIBG on Monday. While it is reassuring that the cat scan is clear, it doesn't mean MIBG or bone marrows will be.

Please say some extra prayers this weekend for clean scans for Nathan.

Monday, September 20, 2004

Monday, September 20, 2004 9:00 PM CDT

Hello - we all had a fairly crummy day! Nathan woke up at 5:00 am after wetting the bed and I couldn't get him to go back to sleep in another bed. As usual they were both cranky and fighting. I spent a good part of the day on the phone trying to get scans scheduled. I was extremely stressed out about it. Trying to get these three tests scheduled, in the proper order in the way that would cause Nathan the least amount of grief was next to impossible. It was more so because it was a three way conversation with me talking to the scheduling person at the clinic and she talking to the scheduler at the hospital. It was impossible to convey all the different scenarios that would work and not work. He ended up being scheduled for his bone marrow biopsy at 9:00 and then we were to go the the radiology center and have his MIBG scan at 10:00. There was NO way he could lie still on his back for an hour and a half after coming off of anesthesia with painful holes in his back! I was feeling guilty for needing to change it all around after the clinic's scheduler worked all morning getting it done so I decided to talk to the hospital myself and after initially thinking it was not possible we finally got a schedule that would work. I think I added a few new gray hairs and wrinkles in the process. It is so important that I be Nathan's advocate but it is also so hard. Fortunately all the people I dealt with today were understanding.

Anyway..... Thursday morning Nathan will have the bone marrow biopsy at 9:00 and at thay time they will place an IV and put him under. At 2:00 that afternoon we will go back to the hospital for his MIBG injection. Friday morning at 9:30 he will have the MIBG scan which will last 1.5 hours. He has an hour or less to eat something and then he takes his oral contrast at 12:00 and 1:00 and then has the Cat scan at 2:00. After that we will pull the IV and be done. Sometime in there I plan to collect his urine for that test. Hopefully I can do it Thursday morning if he doesn't wet his bed again (it has been 2 days in a row and 4 times in the last 10 days).

Once again today it was quite hot out and the kids had some fun playing outside with our new neighbors who are the same age as they are. That was the one fairly smooth part of the day. Dinner involved Julia throwing a fit about the meat I put on her plate (though it was really a control issue). She screamed in her room the whole dinner and then finally calmed down and ate all her meat.

The kids are happy to go to bed but are being just awful lately with coming in and out of their room for one excuse or another. EVERY night we have to yell at them after repeated request for help with toys they have dropped or other trivial things.

Have I complained enough? I guess so....we all just need a few good days so we can recuperate. I think it is not the acts themselves but the cummulative effect which is wearing away at Luke and I. We did toast to our anniversary with a glass of wine at dinner (to the lovely sound of Julia screamining). We will celebrate without kids soon, we hope.

Thanks for reading this far...sorry about the negative nature of the entry. I hope the next one is better.

Saturday, September 18, 2004

Saturday, September 18, 2004 6:59 PM CDT

Hello,

Not too much has been going on. There is still no word about when Nathan's bone marrow biopsy or other tests are scheduled. I hope to hear something on Monday. As of today there are no more banans in the house so I will begin to withhold chocolate and vanilla as well in preparation for his urine test. This is the test that shows elevated numbers if Neuroblastoma is present. Hopefully I will collect it in the next week.

Luke came home today. He was supposed to get back last night but after sitting on the plane at the gate for 3 hours his flight was cancelled due to bad weather. He then spend 2 and a half more hours on a shuttle to another airport and then waited around for a shuttle to the hotel. He is wiped out!

The kids have been pretty emotional the last few days and there have been lots of fits. We have been running some errands and playing outside. It has been in the mid-80's which is very warm for this time of year.

Thanks to everyone who responded about Nathan's behavior. Your notes and e-mail reassured me that most likely he is just being a 4 year old...albeit one who has some heavy things to deal with.

On Monday, Luke and I will celebrate our 7th anniversary. Last year Nathan was in transplant for our anniversary. We have not big plans, Luke is exhausted and has a work deadline coming up so we may celebrate it a little late.

I plan to go back to choir this week and see if I can join. I am hoping it works out.

Until next time...

 

Nathan's preschool Picture

Wednesday, September 15, 2004

Wednesday, September 15, 2004 2:29 PM CDT

Hello,

I just called Sloan to verify Nathan's HAMA status and as expected it is negative. So...we will be off to NYC again on October 24. The good thing about knowing so soon is that I checked ticket prices and they are great. Half of what we pay sometimes and we can even go on a Sunday instead of a Saturday. So - tickets are booked. I need to speak with Nathan's local doctor about the scans. At this point we are planning on doing them here...I just have one more question that needs to be answered.

Nathan had a HUGE tantrum today as I was trying to take him to preschool. I had given him milk with lunch and after I had him in the car ready to leave he told me he wanted more and I said I would bring him fresh milk after preschool like I usually do and he just lost it. We got to preschool and I had to wrestle with him and put him in the stroller and it became clear he would not calm down and so I brought him home and put him to bed and told him that since he chose to nap instead of preschool he would have to stay in bed for a long time. He just loses control sometimes and it seems to be more frequent. I really wonder if he needs some professional help to work through all the rage he has built up. I haven't a clue where to turn though. Also, I don't have a good feel for what is normal 4 year old behavior. Coupled with the fact that he is normally so very well-behaved I just don't know if this is just a normal way of letting off steam or if he has psychological trauma from all he has been through. If any of you are cancer parents reading this entry I would appreciate your perspective via e-mail.

Our morning was good at least. We went to a play group and it was good for all of us. Last night I got to do womething wonderful for me. I got a sitter for the kids and went to a choir open house at a friend's church. I used to sing in choirs when I was younger and I LOVED being able to do it again. I will go back next week and talk to the director to see if I could join. I was not able to stay late enough last night to talk to him. It was my first experience with a teenage sitter at my house and the kids behaved really well for her and she did a great job. Her family is the one who takes care of Ellie for us and we knew we could trust Brenna. So - I am very happy to have taken this step and now maybe Luke and I can actually go out on a date every once and a while when we don't have family in town. I just really prefer the kids get to go to bed in their own beds which is why I have not taken people up on offers to watch the kids at their houses (while we really appreciate the offers!).

I will have to wrap this up. Julia is just screaming because she doesn't want a nap and I am having trouble concentrating. It is a banner day when I have to deal with both kids having horrible trantrums....ughh.

I will update again when I know something new!

Sunday, September 12, 2004

Sunday, September 12, 2004 5:09 PM CDT

Hello,

Just when I was talking about how nice the weather has been it got hot again. I suppose it is the last gasp of summer. We spent a warm hour or so outside of Nathan's clinic today. An organization just opened a playroom for immune-compromized kids and siblings or kids of parents who are immune-compromized. There is a separate area for the kids undergoing treatment. Nathan has played in there a few times and they will actually have volunteers watch siblings while the other child has an appointment. It is a really wonderful idea. There are some pictures of it in our family page for August. They are the camper pictures. Anyway - they had an opening party with food, inflatable slide and jump room and some entertainment.

We spent this morning cleaning out or garage which was gratifying. I have been tackling all the little around the house projects that have been bothering me for the last year. It is very good for me mentally.

Yesterday the kids wanted to hang around home and play so I did some more cleaning and organizing and then we ran errands in the afternoon. Last night I went on a girls night out whith some other moms and enjoyed myself.

On the medical front, Nathan's immune tests came back and he is off of his related medication now. He is also ready to start reimmunization. His local doctor will be getting the information from New York about that.

We have decided for sure to do the bone marrows here and need to decide if we should do all the scans here. We are mulling it over and will decide soon. Our decision hinges on some seemingly trivial things. One is the type of medicine he takes to protect his thyroid. Awful tasting stuff but the stuff they give in New York is different and is ALOT less nasty and since it is several doses we want to do that kind. Also, there needs to be a TV and VCR in the MIBG scan room. I am not sure if they can provide that here or not. Like I said, sounds trivial, but means a lot to Nathan.

Tomorrow Luke leaves for a weeklong trip to his office in Washington DC. It is the first long trip he has taken since diagnosis. It is certainly time for him to get back to normal working conditions, but this first time will be a little hard. At least I will have my Tuesday off. I will have to use it well this week. I also get Thursday morning because I am going to the doctor. Those moms of you out there know that even going to the doctor is a treat when it is without kids!

Hope you all have a good week!

Thursday, September 9, 2004

Thursday, September 9, 2004 7:15 PM CDT

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Update a little later in the evening. I forgot to mention two things in the earlier entry.

First off - about his new picture. I asked him to go pick out some clothes and he came back with that hawaiian outfit (courtesy of my father). He was so excited about it and so cute I just had to take a picture.

The other thing is that all his blood counts came back great! It is only the second time or so that they have been so normal. They always go down during antibodies so it is nice to see them nice and normal.
************************************
Hello,

Thanks for checking in on us.

Today Nathan went to the clinic. He did a great job with is blood draw even though as usual, he had to be stuck two times before it would draw blood. I always have numbing cream on him so it really doesn't hurt too much. The blood has been sent to New York to await Tuesday's test.

We talked to his doctor for awhile. He heard from New York about the immunity test and is also expecting the results but no word yet.

I asked about doing the bone marrows locally and he told me that it is no problem to do them over at the hospital under anesthesia, which is our preference. He is going to check with the doctor in New York but it should be no problem. We will also do a urine spot check some time next week. The rest of the scans we will do in New York because they have all the previous scans there and they can be interpreted more quickly and more accurately that way. The scans can be done on treatment days so they don't add extra time in New York like the bone marrow biopsies do.

The meeting left me so thankful, once again, for how wonderful our local doctor and nurses are. The care is so personal and patient. The communication between us is as good as it could be. It is a wonderful thing.

Nathan had another good week at preschool (he is off on Fridays). I think he enjoys snack time the most!

Wednesday, September 8, 2004

Wednesday, September 8, 2004 8:03 AM CDT

Good morning,

We had a nice holiday weekend. We got some yardwork and housework done. On Sunday we went for a hike and on Monday our cul-de-sac had a cookout which was a lot of fun. We are into the early September weather in Colorado which is just gorgeous. 50's and 60's in the morning and 70's in the afternoon and almost zero humidity of course. On the other hand, in 2001 we had our first snow on September 8 (which is today).

Yesterday, being Tuesday, the kids were in daycare. I still have to go pick Nathan up and deliver him to preschool so not quite as much as a day off as it used to be.

Nathan is doing well. Nothing going on with his health at the moment. Tomrorow he will go get his blood drawn at the clinic and have an exam. We are still waiting for the results of the immunity test that were done in New York. It is likely that he will begin reimmunizations once we get the information. Won't that be fun!!!

Nathan's 3 month scans will be done on our next trip to New York. I am not looking forward to the worry of that! I would rather he didn't even have regular scans as I am not sure early detection of relapse actually helps much. I am also trying to figure out about possibly getting his bone marrow taken here instead of NEw York because in New York they will not do them on a treatment day and so that means we have to spend an extra Friday and weekend in New York. On the other hand, they do bone marrows under conscious sedation here and I am not wild about that either. So....who know what we will do - I will keep you posted.

Saturday, September 4, 2004

Saturday, September 4, 2004 10:23 AM CDT

Good morning,

First off, I need to thank everyone who has donated to Lunch for Life so far. We are been overwhelmed by seeing all of your names on the Lunch for Life page and we know there are a lot more names of those we don't personally know. Big thanks to you all!

Nathan's first week of preschool went well. He still is enjoying it immensely.

Both children have been overly emotional this week and having lots of fits. I am handling it very poorly and have been having a hard time myself. I have held it together for so long and through such horrible times and it is beginning to wear on me. Hopefully we will all adjust soon and start to heal.

We have no big plans for this holiday weekend. The weather will not be so great today and tomorrow. We will have to find a way to occupy ourselves indoors.

I hope you all have a great weekend!

Wednesday, September 1, 2004

Wednesday, September 1, 2004 8:09 AM CDT

Good morning!

It is September 1 today and so the first thing I want to talk about is Lunch for Life. Please see the text above for details but I will explain why this is so important. If you recall this is something started last year and is now being done in a greater scale this year. Lunch for Life funds Neuroblastoma research. When we were at the Neuroblastoma Conference we were given an example of how important private funds for reasearch are. One of the key components to Nathan's treatment was taking Accutane in high doses. The Doctor who did the study on Accutane told us it took him several years to be able to do the study. He could not get any funds for his reasearch until he finally got a grant from a private foundation. Accutane increased survival rates by 10� There is so much the researches do not know about Neuroblastoma. The more research that can be done, the sooner a more effective treatment or even a cure can be found.

Donations can be made on the website and can be made in Nathan's name. We thank you in advance!

Now on to what is going on around here. Nathan thoroughly enjoyed day 2 of preschool. The kids are loving their bunk beds and Julia is doing great in a "big girl bed". They spent yesterday at the sitters and I finished switching all their things around between the bedrooms and took down Julia's crib. Today we will be doing mundane stuff and I am very happy about that!

Now that we are home for 8 weeks with minimal medical stuff going on I am really hoping to catch up with a lot of my friends. For some of you it has been quite a while and I am looking forward to reconnecting!