Monday, August 30, 2004

Monday, August 30, 2004 6:56 PM CDT

Hello,

We have had a good day today.

Nathan had a very good time at preschool. He told me he loved it. He said he played a lot. The teacher told me he refused to dance and was also concerned about him because it took him a lot of effort to get up off of the floor. I Told them that was normal. He still doesn't have the strength of an average 4 year old but he can do most things so I am assuming it was his normal behavior. He played well with the other kids and fit right in.

We got the bunk beds and the kids are very happy about them. They have been playing and can't wait to go to bed tonight.

I put a few pictures up on the photo page below.

Saturday, August 28, 2004

Saturday, August 28, 2004 7:26 PM CDT

We are home!

Friday's treatment was riddled with pump problems and cranky Nathan but we survived and got the room cleaned and got out of there. Our flight was uneventful and Nathan slept for an hour of more of the flight so all was good.

Julia took off running into my arms when she saw me at the airport and it was a truly wonderful greeting. She is now potty trained (except for #2 which we are working on). Since she has reached this milestone we feel it is time to get rid of the crib and so we bought bunk beds today (don't have them yet) and she and Nathan will soon be sharing a room. This is something they both have said they wanted so we will see how it goes.

We had a pretty good day today as a family. The four of us cuddled in bed first thing this morning. IT is always difficult to transition back into things when Nathan and I return. Everybody is tired and emotional and I seem to need several days to adjust but by now we all know what to expect so all is good.

Monday Nathan starts preschool! We are so excited for him and think it will be a wonderful thing for him. He may likely have some rough times but I really think that overall it will something he loves.

I want to send a blanket thank you to everyone who sent cards to Nathan at the Ronald. They really brightened his day.

Nathan will have a break from all things medical for a while. The next thing on tap is his HAMA blood draw on Sept 9 - to be tested on Sept. 14. He will also have a hearing check up in October. The doctors in New York said that now he is off his accutane he needs no further oncology check ups until we get back to New York.

Nathan seems so healthy and hardy today. It is wonderful to see. Who know how long it will be this way but boy do we love it.

Friday, August 27, 2004

Friday, August 27, 2004 7:39 AM CDT

Good morning,

We are awaiting the final treatment. I am hoping they come hook him up soon. The car will pick us up from the Ronald at 2:45 and we will be on our way home. I need to finish packing when we get back so I am hoping fo smooth sailing today.

To back up a little... Wednesday afternoon Nathan and I went to Toys R Us to spend a gift card (Thanks Beth!) and then went to a cook out. Nathan asked me earlier inthe day if there was a cookout and was disappointed that there was because he wanted to eat in a restaurant. I explained that the cookout was free and he got over it.

Yesterday (Thursday) was labs day. His IV did not want to draw at first but after having some fluids run through it, it was able to give all the blood they needed and so no extra sticks. A volunteer came in and read to him a long time and his pain came while e was being read to and he was able to continue to listen for a while and so his pain was not too bad. He had some hives yesterday though. We went to Wendy's afterwards and he wanted to stay and eat but was a little fragile for that. He though his Coke didn't taste right and started crying. Everyone was looking at him because he looked so torn up. He was all puffy and blotchy. People were very nice though and he finally accepted my Coke. I did some packing in the afternoon and then we went to Joan's to drop off our things that stay in New York and had some dinner.

Our night was pretty good. Those who know me know that I have night terrors. Well - last night I thought I was trapped in some place and I banged on the wall and took the headboard off the wall before I woke up and figured out where I was! Luckily our room was at the end of the hall so no one was awakened (besides Nathan). I will be so glad to be in my own bed tonight!

Here's hoping for an quick and easy treatment and no delays in getting home tonight!

Wednesday, August 25, 2004

Wednesday, August 25, 2004 9:05 AM CDT

Good morning,

Sorry I didn't update last night. Yesterday was a better day. The morning was a bit rough and I had to force Nathan's medicines into him. He was also ignoring the doctors and nurses who were talking to him. We rested some after teatment and then went to Herold's square where we did some shopping. We were in Penn station a little and I could not believe the police presence there. There was a gropu of 2-3 police officers every 10 feet as I walked around. Afterwards we went out to eat and then to bed. He pain was about the same yesterday.

He had just finished his infusion this morning and is sleeping it off. He actually had considerably more pain today. More than any other day besides the first Monday. I have no clue why. I don't think a HAMA is developing. At this point I am (and have been) planning on being back here until Dec 2005 and if he gets to stop before then, then I will be very happy.

Last night Nathan and I had one of the better night's sleep in a long time. I definately feel better today. The night before there was someone talking loudly and playing guitar in the hallway at 12:30 am. Can you believe that? I had to go out there and ask them to stop.

This week is crawling along for us because we want to come home so badly. Only 2 treatments left.

Monday, August 23, 2004

Monday, August 23, 2004 8:33 PM CDT

Good evening,

Well - we got through today. It was long as expected. We had to wait for a half hour or so just to get a finger stick and quite a long time more to do everything else. The IV placement was traumatic but successful. Once again it took two pokes to get it in and Nathan was hysterical. The moment it is in he is instantly fine but before the placement and if the placment takes too long he starts screaming.

His pain was fairly light for a Monday. HE very calmly asked for pain medicine and oxygen while he was eating his lunch and then lay down. He had a grunt here and there and then slept it off. He was quite cranky afterwards and I am at the point where I am not handling it well so we have had lots of fights and cross words today. He is getting more assertive, which is good for the most part but hard for me. We had an argument about the clamp on his IV. He insisted that it should be closed when it is working and I tried to explain it was the opposite and he would interrupt me and tell me that I was wrong over and over again. I am on my last nerve and so I would not let it go either! He let me have a little catnap and asked me to share his pillow (at the Ronald) and then a few minutes later he kicked me out of his bed.

Later we went to a little toy store and than walked over to Joan's apartment to have dinner with her and my Aunt Eleanor and Uncle Bill. We had a very nice time and after dinner Nathan was having a ball running around the apartment and laughing and playing. He also was trying to pla with Joan's bull mastiff puppy who is not "puppy size". It was cute to watch.

We are counting down the days...I can tell I will need to recover when we return...I especially will need a break from Nathan. Staying at the Ronald we are right next to each other 24/7 and I need a break. It is going to take a lot to make it through the rest of the week. Thank goodness his treatments are going so well at least.

Sunday, August 22, 2004

Sunday, August 22, 2004 4:11 PM CDT

Hi! We are back in the city.

Friday's treatment was about the same but a little more crankiness. In fact I missed his pain because he insisted I go to the cafeteria and I told him I would not be there for his pain and he didn't care - he just wanted some food that he then did not eat. Of course I knew he wouldn't eat it but it is important he is not upset when the pain hits because it is harder for him to handle so I went anyway. He also threw a fit about having his IV taken out. For some reason he hates that part and it doesn't even hurt.

After some lunch and rest we took a subway to Grand Central Station and caught the train. The train ride was 80 minutes and Nathan enjoyed it. Our friends were there to pick us up and we went to their house and got the grand tour and a snack and then were off to a fair in Connecticut. There was a parade with fire trucks and bagpipers. It started to rain and so we went off and had dinner. It cleared up some in time for the kids to go on a few rides and then a thunderstorm began and so we left. By then it was late anyway. Nathan slept in the room with Garrett and his brother and had no problems.

Saturday it rained all day. After some playing in the morning we went to a children's museum and it was great. Nathan had a blast and I finally had to drag him out of the last exhibit when it was almost time to leave. We went out for dinner and then Nathan and Garrett had a bath together. When it came time for bed it was difficult because we were changing who got the bed and Nathan got upset. He really started crying and was very sad that he wasn't at his own house. He has never been homesick before but I think being in such a family environment was causing him to feel that way. He finally went to bed and slept all night.

This morning we went for a bike ride and had really nice weather. Nathan and Garrett where in a bike trailer and we all enjoyed being outside and getting some excercise.

We caught the 2:15 train back to the city and have had some food from a cookout and are hainging around. Nathan is still quite emotional today and stil very homesick.

So...5 treatments to go. Tomorrow will be long since it is a Monday and also since Nathan will get a new IV. I am hoping for a decrease in pain that will be a sign he is getting a HAMA.

Thursday, August 19, 2004

Thursday, August 19, 2004 8:38 PM CDT

Hi,

Another fairly good day here. Today Nathan asked for hispain medicine as soon as he felt some pain and so he actually didn't even cry out in pain today. He definately had pain but was able to cope very well.

His IV is still working but would not draw blood well enough. On Thursdays they draw lost of blood so they had to go ahead and poke him. I was showing him pictures on the computer while they did it and it went pretty well. There is a chance they did not get enough blood though.

We did some laundry and cleaning this afternoon and then went to a toy store. Nathad wanted to buy something to dress-up in and so he got a pirate set. He had a ball playing pirate. I had to teach him what to do with the sword. I put some pictures on the photo page below.

We went to a cookout at the Ronald (McDonald House but Ronald for short) and then they had pottery for the kids to paint. Nathan painted a cat and then we went back to the room and he had a bath. He was is really good spirits and played and sang in his bath. He has now rolled over to go to sleep and tomorrow is Friday and we will be halfway done!

Tomorrow we will head upstate to spend the weekend with a family we know through treatment. We spent rounds 2-4 with Garrett and his parents, Marianne and Eric. Now we are on opposite schedules and do not see them and they have invited us up. We will take a train tomorrow afternoon and it sounds like there are some fun things going on, including a parade tomorrow night. I may not update until we get back.

So - thanks everyone for keeping us in your thoughts and prayers. The way this week is going - you are doing a good job!

Wednesday, August 18, 2004

Wednesday, August 18, 2004 7:52 PM CDT

Good evening everyone.

We had another fairly good day (in antibody terms anyway). The pain was a little less today and he coped well with it. He didn't sleep when we got back but I actually dozed a little. Our nights have been a little sleepless around here. We went to Joan's apartment in the afternoon and hung and and had dinner. My cousin Laura also joined us. Nathan really enjoyed himself (as did I).

Some medical information...

Dr. Kushner said that having had 6 - 2 week rounds of accutane Nathan is done with his. This was news to me. I won't get into why I thought it was otherwise but I am happy to check another part of his therapy off the list. Dr. K will further test his immunities as well. They do a different test from which they will be able to see if he can be off his weekend antibiotic he has been taking all this time and also to see if his immune system is ready for reimmunizing. I also asked him what the average time to HAMA was for kids who didn't HAMA in the first 4 rounds. He said about 10 rounds.

After all this runaround with the kidney test which I was doing solely because Dr. K told me we needed to in June he asked me today what the big deal was in getting the tests and said he wouldn't even bother. I kept my mouth shut and just nodded. It is SO TYPICAL of the way things go here. So - we will reassess when we get home.

Tuesday, August 17, 2004

Tuesday, August 17, 2004 6:51 PM CDT

Well - 2 down, 8 to go. Today was not too awful either. He had a bad case of the hives but he didn't really notice it so that was good. Also they didn't make his throat tight this time so he "coped" right through them. After the pain went he slept for a while and when he woke up he actually wasn't crabby and we went back to the room and he ate a little and had a nap. Afterwards we went for a walk and to the candy store and out for dinner. He had a wonderful time at dinner watching all the trucks drive by and was smiling, giggling and talkative the whole time. We went down to the game room when we got back and now it is bedtime but he and his beanie baby bear are playing trucks together and since he only has these few hours to play I am letting him play a little longer.

Monday, August 16, 2004

Monday, August 16, 2004 9:10 PM CDT

Hello - the first day went pretty well considering it was day 1. It took a while to get going as usual and Nathan's IV took two attempts which is also not unusual. Nathan was very good about it and didn't get overly upset. His pain was intense but with two doses of pain medicine he relaxed and slept for a while. He didn't even complain about leaving the hospital and then slept for a while when we got back to the room. Afte he woke up he watched TV and I rubbed his feet for a few hours and then he and I played with cars and went to the playroom for a little bit. There was a cookout after that and then it was bedtime.

So - all in all - not too bad. I will try to update again tomorrow.

Saturday, August 14, 2004

Saturday, August 14, 2004 9:08 PM CDT

Good evening,

We made it to New York without much difficulty. The only glitch in out travel was after waiting in long lines to check in and then for security it was discovered they had given me a boarding pass for someone else on another flight but the same seat. Fortunately, I went and got it fixed and did not have to wait in the lines again. Nathan wasn't too happy about all the walking back and forth.

Our room is nice and clean this time and a good configuration. We got settled in and my Aunt Joan brought some of our things to us (that we keep in New York). She and Nathan played for a while until we told him we just had to eat. He would have liked to play with her all evening. He is very excited to be in New York and was bouncing off the walls...which is very much not like him. He just now finally went to sleep (10:00).

We are expecting the tropical storm rains to start in a few hours. Regardless we will be out and about in the weather tomorrow because I left a prescription at home and have to get a replacement here, but the pharmacy is far away. I am sure Nathan will enjoy the trip and maybe we will also go to Times Square.

Well - time for me to wind down and think about sleeping. Hope you all are having a good weekend.

Friday, August 13, 2004

Friday, August 13, 2004 3:50 PM CDT


Hello -


This morning I premedicated Nathan and gave him the shot when we got to the clinic. After about an hour it swelled slightly and itched a little. It then receded a little and remains only a little swollen. So - the plan is to keep premedicating and hopefully that will do the trick. I will have to check it again thisevening when the medicine is worn off to see if it swelled back up.


The other good news is that we do have a room at the Ronald McDonald House. I will put the address on the page. I will add a room number after we get there.


I have not yet packed a thing and still have some errands so I will make this brief. I will write again after we get to New York.

Thursday, August 12, 2004 PM

*****************************************
Update from this afternoon - morning update is below

First of all - the preschool meeting went well. Nathan liked the preschool and the teachers. They will have no problem with him missing the first 2 weeks of school. There are 13 kids in the class and a teacher and 2 aides.

On the medical front we have had a little development. I srote about his injection site swelling (9 cm by 9cm). His doctor saw that today and was quite concerned. It is clearly an allergic reaction to the shot but being so severe he said it could become systemic and he could stop breathing or some other reaction in another part of his body. Nathan's doctor call his New York doctor and they decided he should be premedicated with a benedryl-like drug and then they should observe him from the time of his shot and two hours afterwards. If it happens again tomorrow (and I am certain it will) he will not have his shots on the weekend. The doctors will discuss it more when we see what happens tomorrow. These reactions have happened before but seem to getmore and more severe as time goes by. I have mentioned it to the team in New York many times but they never have looked at it or have just been very unconcerned about it. I guess it took another doctor forcing the issue for it to get some notice.

The two doctors will also talk about the whole renal scan business and if we should do anything about it in New York or just wait. So - we will see what they decide.
***************************

Thursday, August 12, 2004 AM

Thursday, August 12, 2004 8:25 AM CDT


Good morning..

We've been having a good week so far.

Monday I was able to talk to Nathan's doctor about some things. Oh - to back up a little I called Denver Children's hospital about the kidney scan and was told that they were very hesitant to do it since he doesn't have a broviak any more. The test invloves timed blood draws and with an IV blood draws can be difficult. The IV could stop drawing blood at any time. and then the test would be thrown off. So...another failed attempt. Then I talked to Nathan's doctor and we both agreed it ouwld be a good idea to run the urine test again and if it is normal not to worry about the other test. Nathan was due to have his blood drawn today anyway so it would all work out. Well - yesterday as we had been colleting urine all day - I was on the phone and Nathan went into the bathroom and used it and I notived a moment too late so the collection was aborted. So - I am going to talk to his doctor today about how important it is the test be done soon and what are the risks if he has kidney damage and we don't know it. We have tried so hard and so many times to get him a test it is just so frustrating.

The rash Nathan had was most likely from sun exposure. I described it and its location to his doctor and that is what he said it was. It is mostly gone now and didn't bother Nathan anyway.

He had his first shot yesterday. He was not too happy about it but was very good. The poor thing got his usally very large welt where I injected him. It swells and itches him like mad.

Today he will go meet his preschool teacher and see his classroom and then go to the clinic this afternoon. Julia will go to daycare today.

One other complication we are dealing with is that the Ronald McDonald House is very full next week and we may not have a room. I should have an idea on Friday but not know for sure until Saturday (I will call on the way to the airport) or even until we arrive. So - I am sure something will work out but what a pain not to know....

Well - I think that is all the news for now...I will try to update sooner next time!

At the children's playroom next door to the clinic

Sunday, August 8, 2004

Sunday, August 8, 2004 2:38 PM CDT

Hello everyone,

Luke and I got back from Cancun last night. We had a very relaxing trip and some quality time alone together. The kids had a good time with their grandparents and all is well.

We have received word that the antibodies and related treatments in New York will be covered. That is a great relief to us.

I got Nathan's immunity results, but did not get to talk to his doctor about them yet. His immunity to chicken pox was wiped out with the transplant. I do not yet know if reimmunization would occur anytime soon. His other result which is the IGG is 898. The is a measurement of his overall immune system strength and it a very good, normal number.

Nathan's most recent round of accutane affected his skin more than usual. He has a few sore on his face and a nasty rash on his arms and legs. I do not know if the rash is directly related to the accutane or not. He finished the accutane Wednesday morning. My mom thinks the rash appeared Thursday or Friday.

We are still trying to get his kidney test done. I will call tomorrow to see if I can get it scheduled before we go to New York. I am thinking that will be unlikely. We may look into just having it done in New York instead. He is scheduled to see his oncologist on Thursday, but that conflicts with his preschool meet the teacher time and so I will be moving that appointment but I need to see what happens with the kidney test. Whatever happens I will try to make it so he only gets stuck for blood one time this week. As it is, he starts his GM-CSF shots for the antibodies on Wednesday.

We head to New York on Saturday. It has just come around too soon! Our good friends Janene and Joshua won't be there with us this time since Joshua had his antibodies early this round. It is going to be lonely! We are going to make plans of some sort for our weekend in between. The last thing we want to do is hang out at the Ronald McDonald house all weekend. I know it is a great service to all the families and I am not knocking that...it just is for me the most depressing place to be. Not even because it is filled with sick kids, more that it is dark and ugly and dirty...yuck! Anyway - I have gotten that out of my system and I am thankful to stay there because if I had to pay for lodging for two weeks it would cost twice my monthly motgage payments! On a happier note I am looking forward to seeing my family and friends who live there and Nathan is looking forward to Toys R Us and Times Square.

So - I hope to have a better idea of what the week looks like tomorrow and will let you all know what is going on.