Monday, June 28, 2004

Monday, June 28, 2004 8:48 AM CDT

Good Morning...

We had a very nice time at the picnic. You can see a slideshow of pictures

here As you will see it rained part way through but we did have some sun at the beginning and middle and the kids got to run around and play at the playground. There are train tracks right by the park and the kids loved watching the trains got by.

Yesterday the kids and I stayed at home and did some cleaning and yardwork. Luke is extremely busy with work and had to work all day. Today the kids and I have a free day and so we will run some errands this morning and then this afternoon my brother Jason is coming by to visit.

As far as medical stuff goes, we will be collecting Nathan's urine on Wednesday for a kidney function test. On Thursday he will go to the clinic for a related blood test and also to draw his HAMA sample to send to New York.

Friday we head off to Illinois for a week to see Luke's family. It will be the first long road trip with the two kids so it should be interesting!

 

 

Saturday, June 26, 2004

Saturday, June 26, 2004 8:27 AM CDT

Good morning - well the sun is shining for now anyway! We are looking forward to the picnic. I will update tomorrow and post some pictures.

Thursday, June 24, 2004

Thursday, June 24, 2004 7:15 PM CDT

Hello -

well the dental stuff went ok. He ended up with 12 crowns which is all but his 8 front teeth. He is a little sore but doing well with it. As usual, he was very upset and irrational when he woke up from anesthesia.

As we waited in the waiting room this morning we were entertained by a mouse in the waiting room...not really want you want in a hospital!

Excitement in our house yesterday was that we got a new van. After 8 years our car had lots of problems and we have an upcoming driving trip to Illinois. We didn't get home until 10:00 last night and had to wake up the kids early. It will be good to get them to bed tonight so we can do the same. I have a cold and it seems Nathan is getting it too.

He is going to have a creatine clearance test (which is a urine collection test) next week to see how his kidney funtion is. His blood counts were good. The blood draw wasa bit traumatic because he has to get used to getting poked now.

We are looking forward to the picnic. Unfortunately it looks like it might rain but we will be under the pavillion and will make the best of it. Thanks to everyone who has RSVPd.

On a personal note I have many many emails I need to respond to and just haven't had a chance so...Louise, Judy, Angie, Tonya, Myndi, Denise, Janene, Joan and Ashley (and I am sure more that I can't come up with right now) I will try to get back to you as soon as I can but I am not ignoring you!

Monday, June 21, 2004

Monday, June 21, 2004 5:21 PM CDT

Hello - we are home and have been recovering. Unfortunately we are all on NY time and have been getting up extremely early.

The kids are very happy to be home with all of their toys. Today we have been able to relax and not do much. Tomorrow the kids will go to daycare and I get a day off. On Wednesday Nathan goes to the doctor and on Thursday he has his dental work done. Friday looks to be an open day which is very nice and Saturday is the picnic.

About the picnic...please note that I changed the directions a little. There is some construction and so it is not too clearly marked.

We haven't heard back from very many people. We really hope a lot of you can make it - if only for a little while. So - please consider coming!

Well - I will update Thursday night about how the dental work goes.

 

 

Friday, June 18, 2004

Friday, June 18, 2004 3:14 PM CDT

We are done! I don't feel like rehashing today but it wasn't as bad as yesterday. You may have noticed the party invitation above...we hope lots of you can make it. Email me at the link on the page if you have any questions.

We go home tomorrow!

Thursday, June 17, 2004 - part 2

Thursday, June 17, 2004 8:51 PM CDT

Hello - well - 1 day left thank goodness. Today was terrible. His IV actually worked so that was the good part. We waited around forver before he got started and the boy in the other bed (we have had one of the two rooms with 2 beds and no windows for 2 weeks - I don't know why we won the bad bed lottery) had his pain and it was really bad and we had to listen to the whole thing as I tried to read to Nathan. Nathan asked for his dilauded (narcotic) early. He likes it now..I think he is starting to enjoy the high from it. Well - she gave it to him far back in his line so it was not immediate or a strong rush and that upset him. By the time the pain hit he was still mad about the dilauded and so he was in no state to control his pain so he was screaming and yelling. We gave him an extra dose of dilauded which finally knocked him out some, but I was not allowed to move. I left the room for a few minutes and he woke up and had a huge fit. I couldn;t hold his oxygen just right or have my hand on his leg just right. If I tried I ended up in some contorted painful position that I just couldn;t hold for too long. He was just mad mad mad and cranky. He slept for a little and then woke up. He had a Pepsi which Mike threw away as we were cleaning up to leave and Nathan freaked out and was completely unreasonable about it. Mike went to get another and Nathan was just screaming and yelling. Mike went to get another Pepsi. We tried to get his shoes on and he as kicking and screaming. I finally carried him out as he struggled and screamed. Julia saw him like that and started crying and so she and Kathy went on downstairs and I put him down to talk to him because I wasn't going to let her see him like that anymore. That is the point where I started crying. Unfortunately in the screaming rus Mike left Pepsi #2 in the room. He ran back to get it and they had already pitched it so there was another big fit. He finally calmed down enough to leave and we came back to the apartment. I called Luke to come down from working and I took off and had lunch and a pedicure and manicure. Nathan was very good for Luke and by the time I returned I was able to be with him again. We had a good dinner and he went to bed happy.

Having to deal with him like that is the hardest thing I have had to do - and I have had to do it repeatedly during the past year. I keep thinking that if I lose him I will feel guilty for all the times I just couldn't stand to be with him. I am so drained after these days that I have no energy for Julia. I feel like she isn't going to have the kind of connection to me that she should. She must think I love Nathan more that her. I tried to play with he yesterday and Nathan just ruined it by trying to dictate how she should play. So I had to discipline him even when I was trying to give her attention. I just feel so useless.

I can't wait to get tomorrow over with. I am not sure how well I will be able to deal with him as I am still very raw from today. I have a feeling I will just have to leave the room and let him scream about me being gone. I try to tell him I will leave the room if he keeps screaming at me but there is no reasoning with him when he is in that state.

So - wish me luck for tomorrow....and strength too.

Thursday, June 17, 2004

Thursday, June 17, 2004 6:01 AM CDT
Good morning,
Nathan had as good a birthday as he could considering the circumstances. We went off to the hospital where he got an ice cream sundae and a gift. His nurse brought him a balloon attached to a car which he really enjoyed.
He had his treatment and it was fine. Still plenty of pain so it doesn't appear he is going to develop a HAMA this time.
We got home and he was VERY cranky from the narcotic. He was complaining about everything - even his birthday cake not being exactly how he wanted it. He decided to have his cake and so he did - even though he was still drugged. After that he got his presents and played with them even though he seemed a little uncomfortable. Later in the afternoon Luke and Kathy took Nathan and Julia to the candy store and when they got back Nathan had finally recovered. We had a very nice dinner at the apartment and Judy joined us.
Now for some insurance news...Luke's company was recently purchased. We found out yesterday that our health insurance will change Aug. 1. It will be a different company. They have the usual exclusions for clinical trials. So - we will start over again in the process of getting the antibodies covered. His next round starts the middle of August so we will hopefully have time. Wish us luck.....
Well - off to the hospital again. 2 days left and counting....I am really hoping the IV will work today since they need lots of blood from it.

Wednesday, June 16, 2004

Wednesday, June 16, 2004 5:30 AM CDT

 

Happy 4th Birthday Nathan!!!

Monday, June 14, 2004

Monday, June 14, 2004 3:31 PM CDT

Hello - hope you all had a good weekend. We definately did.

Saturday we went for a long walk in central park and then home for naps. Saturday late afternoon Luke and I ran out for a little and then had dinner and put the kids to bed. Sunday we went out for breakfast and then took the subway to Times Square and went to the toy store. Both kids seemed very tired so we came back and napped them and then we went up for dinner at Judy and John's and had a wonderful time. Luke, Kathy and I stayed up too late playing scrabble and then went to bed.

This morning all of us minus Luke (who was working) went to the hospital. Nathan got his IV placed and they had to make two attempts and it was pretty traumatic. While he had his antibodies, Mike stayed with us and Julia and Kathy hung out in the playroom where Julia had a ball. Nathan's pain was the usual amount and he came home and slept for a few hours. He got up a little bit ago and was in pain so I gave him some narcotics and now he is feeling much better.

Luke had his celebrity sighting on Sunday when he was in line for the pharmacist and Mel Brooks and Anne Bancroft were in front of him. They apparently live nearby.

So - 6 down - 4 to go. 2 more days until Nathan's birthday (well 1 and a half now....)!

Details on the picnic on June 26 will be coming in the next day or two.

 

Saturday, June 12, 2004

Saturday, June 12, 2004 6:39 AM CDT

Good morning....please read the message above about Alex's lemonade stand. Try to find a stand to go to today and support childhood cancer research.

Finally got the last scan..all scans are clear!!!!!!!!

Luke, Julia, Mike and Kathy arrived yesterday evening and everyone was so happy. I got lots of hugs from Julia.

We all went out to dinner and played and talked.

Yesterday Nathan had a pretty good day. His pain was not too bad and he recovered quickly. He even wanted to go somewhere after the hospital so we went to the candy store. Jennifer Love Hewitt came to the hospital taking pictures with the kids. Nathan wasn't sure but I said she could hold one of his trucks so she held his bobcat and they took a picture. She thought he was very cute. I put a copy of the picture on the photo page...it is a pictre of the poloroid so not great quality.

Not sure of our plans today. We will have beautiful weather so we will definitely be out and about.

Friday, June 11, 2004

Friday, June 11, 2004 6:38 AM CDT

It is Friday!!!

Yesterday was a bit more difficult. On Thursdays they need lots of blood. Even though his IV was working it would not draw blood. They had to stick him in his other arm to draw blood and it didn't flow freely so they had to dig around a little. The clowns stayed with Nathan and entertained him the whole time which was great. He started his antibodies late due to all the blood stuff. He was more cranky than he had been but did alright with the pain. He slept afterwards again and we got home a little after 3:00. He felt pretty good and was in a great mood, but had a low-grade fever and so he layed around mostly. He hasn't been eating this week. He eats about half a meal a day. This is common for kids in this treatment and so he will hopefully pick up his eating again afterwards. He has also been having diarrhea which I also hope is just an antibody thing.

After treatment today they will remove his IV. I am just hoping it is still working today so he doesn't have to get a new one for today. He will spend the weekend free of any kind of IV for the first time in 14 months!

Luke, Julia, Mike and Kathy (Luke's parents) arrive later today. We can't wait.

Oh - almost forgot to tell you...part of his bone marrow results are back. They do the bone core and the bone marrow aspirates. The bone cores came back clean so no we just wait for the aspirates. Over a week later I am really hoping they are back today so we can have it all behind us for the weekend.

We are supposed to have wonderful weather this weekend...sunny and 70s. Should be good for getting out and about. Sunday is the Puerto Rican parade down fifth avenue and in central park which we are right by and I hear it is a zoo. Should be interesting too. We will have to plan our activities in another direction though.

Well - we will be off soon for day 5 - halfway done!