Wednesday, December 31, 2003

Wednesday, December 31, 2003 7:46 AM CST

Susan here...

Sorry for the delay in updates. We are so much enjoying being home I have been avoiding updating I suppose.

Monday I took Nathan to the radiation oncologist. First off they laid him on a garbage bag looking thing on the radiation table and filled the bag with liquid styrafoam. As he lay there it got big and puffy and created a "cradle" for him. He will lie in this during radiation to help him in the proper position. They then drew up him with a sharpie to mark some positioning things (the alternative being a tattoo so we were so glad they used the sharpie). After that he had a cat scan and then they sent us on our way. He was very good and lay still and I think he will do just fine.

Yesterday we didn't have to do anything medical and so we saw some friends and the kids played with their friends and it was really nice to do something normal.

Today Nathan and I go off for the radiation simulation and if the DR. had time to do the neccessary calculations we will also do the first radiation session immediately following the simulation. The radiation session itself lasts only about 10 minutes. Everyone has to leave the room but I think Nathan will be OK with that.

We will be doing the radiation for 12 sessions. If he gets to start today we will get New Years and weekends off and go the rest of the weekdays until we go back to New York.

I will update tonight and add some more things but right now I hear both kids awake and so I must be off.

Sunday, December 28, 2003

Sunday, December 28, 2003 6:30 AM CST

Susan here...

We are home!!!!

Everyone is very happy to be home. The trip home went well. We arrived home around 6:30 last night. Luke's parents and sister were here waiting for us having cooked and cleaned.

We slept very well in our beds but both Luke and I woke up around 4:30 or so due to the time change.

We plan to have a relaxing day today before we get going with radiation on Monday.

Friday, December 26, 2003

Friday, December 26, 2003 6:55 AM CST

Susan here...

We had a really good Christmas. Santa was very good to the kids and they loved their gifts. We could barely fit them all in this little apartment. The kids spent the whole day in their pajamas and played.

Nathan was very excited about Santa coming. He had all kinds of concerns the days leading up to Christmas about how Santa would get into the apartment, and how Santa could get to the tree with Luke and I sleeping in the way. Julia was misbehaving as they got ready for bed Christmas Eve and Nathan was concerned that she be good so Santa would come.

Last night we started packing and boxing up all the new toys. Today we will ship them home.

Luke is with Nathan today. He will have his treatment and a bone marrow aspiration. He isn't allowed to eat or drink for the bone marrow and we don't even know what time he will get it. Most likely it won't be until the afternoon so he has a long hungry thirsty day ahead of him. He was being amazingly good about it this morning. It helps that we keep reminding him that he gets to go home tomorrow if we can just do all the things we need to do today.

He had his last shot today. He gets almost 3 weeks off for those at least. He starts those back up Jan 14 and his next round of antibodies begins Jan 19. Monday morning he goes in to start radiation. He will be doing radiation every Mon-Fri while we are home. We feel so bad for him that for basically 7 weeks in a row he will go have some kind of treatment every weekday. At least radiation will be at home.

I put some Christmas pictures on the photo album page. Hope you all had a Merry Christmas too!

 

Tuesday, December 23, 2003

   Tuesday, December 23, 2003 6:55 AM CST

Susan here...

I'll start with Saturday night. After our fun day Nathan started feeling hot in the evening. By 9:00 he reached 38 degrees celsius which is the magic number and so we called the fellow on call and had to drag Nathan out of bed to get blood samples taken from his broviak to check for infection. He was very sad to be taken from his nice warm bed out for a stroller ride to the hospital but calmed down when he got to lie in a bed. We were sprung at about midnight and strolled back home and went to bed.

Sunday we took it easy. After naptime both kids wanted to go somewhere and so we went to my Aunt's place and hung out and had dinner with them and said goodbye.

Yesterday Luke took Nathan to the clinic. They got a late start on the antibodies and being a Monday and havin 2 days off it was harder for him today. He had 4 bouts of diarrhea and threw up. He came home and had some lunch and watched some tv. After a while he went back into the bedroom and watched a movie and bed and then he had a pretty good evening.

Today Luke is taking Nathan again and Julia and I will go find somthing to do. Yesterday we did some shopping and had lunch. It was fun having lunch with just her and sitting across the table from her.

Tomorrow I will go with Nathan and Thursday is a day off and then I will go with him on Friday and he will have a bone marrow aspiration before his treatment. Saturday we fly home!

Saturday, December 20, 2003

    Saturday, December 20, 2003 5:19 PM CST

Susan here...

We had quite a busy and fun day today.

First we went on the tram that runs right by our apartment. When we arrived we hopped on the bus and took a ride around the island and got back on the tram. Both kids loved the tram. Nathan loves riding the bus but Julia did not like that. Next we went to Dylan's Candy Bar – a huge very cool candy shop that Nathan has been eyeing for weeks. They each picked out a lollipop.

We then went to see a display of model trains. It was very elaborate and we all enjoyed that very much. See it here.

They spent naptime giggling at each other and have had a pretty good afternoon. They should sleep well tonight!

Friday, December 19, 2003

Friday, December 19, 2003 4:21 PM CST

Susan here..

I went with Nathan today. It was better than yesterday and he handled everything well. When it was time to go he got to see Santa at the clinic and he told Santa what he wanted. Santa asked if he wanted anything else and he told Santa to make sure to bring presents for Julia too.

We get two days off now!!

Yesterday afternoon (late) Nathan told us he wanted to ride the bus. Instead we rode the subway and went to Rockefeller Center and saw the big Christmas tree. Both kids enjoyed themselves and the tree was very pretty.

Not sure what all we will do tomorrow. Nathan wants to go to a candy store (there is one very nearby) and I suppose we will go out and about somewhere else. We will definitely let Nathan lounge around in his pajamas for as long a he likes. He deserves it!

Oh yeah - I keep forgetting to mention that we have plane tickets home on the 27th. There is a slight chance that Nathan will have to stay a little longer but we will be trying our hardest to make the 27th happen.

Thursday, December 18, 2003

 

Thursday, December 18, 2003 1:00 PM CST

Luke here...I've had Nathan at the clinic the last two days. Susan had prepared me pretty well for what to expect. Yesterday went pretty well. Nathan handled it all well. Nathan's pain at the end of treatment is quite awful despite the narcotics they administer. Yesterday it didn't last too long (10-15 minutes of writhing around kind of pain) and then he recovered pretty quickly and was able to come back to the apartment. He napped and then got up and was really in good spirits and acting pretty normal all afternoon and evening. Today was a much rougher treatment day. His pain hit earlier in treatment and was more intense for a longer period of time. He was in horrible pain for 20 to 25 minutes followed by not quite as horrible pain for another hour or so. He wasn't able to have more doses of the narcotic for pain because his blood pressure dropped very low. He just had to ride it out and handled it all as well as could be expected. Finally he was comfortable enough to fall asleep and the wanted him to rest. His blood pressure came up and he woke up and asked to go home. He is acting pretty normal now. He didn't want to go straight to bed. He wanted lunch which is great. Now he is tired and asking for a nap, so I'm off to put him down for a nap and get Julia up from hers.

Thanks for checking in.

 

Tuesday, December 16, 2003

Tuesday, December 16, 2003 3:01 PM CST

Susan here..

Today was a better day. We went in at 8:00 and Nathan did not fuss about going. We hung around the waiting room for about an hour or so and then they called him back to a room and proceded with the infusion. Unfortunatly his red blood count had dropped alot and so they wanted to reverify with a finger stick and so he was not happy about that.

His pain was a little more today but that is because they cut down on his pain medication. This time his blood pressure stayed fine and he was not out of it. He handled it all very well and we were out of there around 11:30. He slept some when we got home and again later but is doing really well and in a pretty good mood.

Luke will take him tomorrow and Thursday and I will stay with Julia.

 

Monday, December 15, 2003

Monday, December 15, 2003 8:26 PM CST

Susan here...

Well - today wasn't so bad. We sat around the clinic for a long time. They were running far behind. They insisted on taking his blood by finger-prick and also I had to give him his shot but he did well with both. Once we finally got into a room around 1:00 they premedicated him with a pain medicine and anti-inflammatory and then gave him the antibody. His pain came rather suddenly about 2/3 of the way through. He was in great pain and was holding his breath and grunting and crying and writhing around. They gave him two more doses of pain medication in about 8 minutes and he basically passed out from that. In fact they were then unable to get a blood pressure read from him. The funny thing was that if we asked him a question he would respond but he had really low blood pressure. They gave him some fluids and it finally came back up and he woke the rest of the way up. When it was time to go he threw a big fit because he wanted to stay in the comfortable bed. I made him get in the stroller and he was fine after we got home and he watched some TV ate a little dinner and watched Frosty the Snowman and then went to bed aroun 6:30.

Tomorrow we go in around 8:00 and it should be a much shorter day. He gets so upset about going in the morning so that will be a pain. He reall doesn't like going there mostly because we sit and wait and wait and wait in a very large, noisy, crowded waiting room for hours on end and he really want a comfy quiet place to be. I can't blame him!

I will try to update tomorrow night to let you know how day #2 goes. They say it is less painful every day that goes by so at least that is something!

Sunday, December 14, 2003

 

Sunday, December 14, 2003 6:48 AM CST

Susan here..

** I wanted to add some information to the entry today -

here are some links to information about the antibody trial. The first is simpler the second is the actual trial

http://www.mskcc.org/mskcc/html/3215.cfm

http://www.mskcc.org/mskcc/html/2270.cfm?peds=yes&IRBNO=03-077&team=Neuroblastoma&TT=

Sorry for the delay in updates. My mom brought Julia to New York yesterday (and flew right back out) It is great to see her. Nathan is so calm and quiet and we had forgotten what a force of nature Julia is. She is delightful and also tiring! She and Nathan were very happy to see eachother. Julia gave Nathan a big hug and kiss.

We got almost no sleep last night. New York City is just plain loud all night on the weekends. Julia woke up screaming in the night and I brought her to bed with us but she didn't sleep very well with us. At one point Luke woke up with Julia kissing him on the cheek. Nathan started crying when I took Julia out because he wanted her in with him. I think she just didn't know where she was and I hope it will get better.

Tomorrow Nathan's treatments will begin and we are expecting it to be quite awful. We will let you know how the day went.

Thursday, December 11, 2003

Thursday, December 11, 2003 2:26 PM CST

Susan here..

Not much to report. Nathan spent the whole day yesterday at the apartment lounging around in his pajamas. I figured he deserved a day like that if he wanted it. It was a bit boring for me though!

Today we went to the grocery store and bed bath and beyond but that's it.

The shots have been going ok. When it is time for him to get it he gets upset but as he gets it he is fine about it.

Luke and I are going to go out to dinner together tonight while my aunt babysits Nathan. We haven't been able to do that for a while so we are looking forward to it.

Tuesday, December 9, 2003

Tuesday, December 9, 2003 2:24 PM CST

Susan here...

Some good news today - all of Nathan's tests were negative for cancer! We know there are microscopic amounts of cancer left from the tumor being removed and that is why we are doing the antibodies and radiation. We also know that many children (we have been told 50%) relapse after achieving NED (no evidence of disease) for months or years. Knowing all this we are still so vey happy that Nathan has at least reached this point in his cancer treatments.

We went to the clinic today and after waiting around for a few hours we got to see the study doctor. We will start injections of a medication tomorrow morning. Luke and I had to watch a video on how to give him the injection. An alternative is to place a little catheter in his thigh that can stay in for a week at a time that we could give him the medication. However he can not bathe with it in and the medication itself really stings so it doesn't avoid that - so we are going to try doing the daily shot and see how it goes.

He doesn't have to go to the doctor again until Monday. We will figure out what we want to do with the rest of our week.

Monday, December 8, 2003

Monday, December 8, 2003 7:24 AM CST

Susan here...

We had another good day yesterday. In the morning we walked over to the grocery store and did some shopping and then Luke went out to shop and Nathan and I walked to Borders and to FAO Schwartz. After Nathan's nap we all took the subway to KMart and bought a small Christmas tree and decorations and set it up. There are pictures in the photo album.

My mother is bringing Julia here next Saturday. I can't wait to see her and have our family together.

No big plans for today. Luke is working. For now Nathan and I are just hanging around in our pajamas.

Saturday, December 6, 2003

Saturday, December 6, 2003 4:37 PM CST

Susan here..

We moved into the apartment Friday afternoon. We woke him up early to give him breakfast and then spent the morning packing and cleaning. I took Nathan to the clinic and Luke and my aunt and uncle moved our things. We were trying to hurry and get moved before the snow hit. Nathan went into the playroom and played most of the time we waited for his scan. They sedated him upstairs and then rolled him downstairs were he waited for a while. They transferred him to the scan table and then the nurse was trying to take off his mask and he woke up. He had a fit for a long time and finally went back to sleep after another dose of medication.

After the scan he was pretty woozy but wanted to eat out and so we went to a mexican restaurant and had a nice dinner. He very much enjoyed being outside in the snow. This kind of medication also increases the appetite so he ate a ton for dinner and when we got to the apartment he kept eating and eating for another few hours and then got exhausted and went to bed.

This morning he woke up quite happy and enjoyed looking out the window at the snowplows and the tram that goes to roosevelt island that we can see out our window.

We walked to Bloomingdales and to Borders and then had to come home quickly after Nathan had a very big diaper disaster. We were at Borders to buy him a CD with Jingle Bells on it since it is his favorite Christmas song.

Nathan had a good nap this afternoon and I took the subway to Kmart and bought a few things. We will go back soon to buy a Christmas tree and ornaments there.

We are all settled in at the apartment and very happy we made the move. We won't rent an apartment for future visits but to be here at Christmas it will be so nice.

Nathan doesn't go back to the clinic until Tuesday. We found out he will be bone marrow aspirations after the first 3 rounds of the antibody treatment which means he will have to be here until at least the 29th. After that we would come out every 4 to 5 weeks for a little more than two weeks for up to 2 years. The up to 2 years part is only if he doesn't develop an immune response to the antibody and if his cancer doesn't advance.

I hope you all are enjoying your weekend. We are relishing ours!

Thursday, December 4, 2003

Thursday, December 4, 2003 4:36 PM CST

Susan here...

Nathan and I had a very long day. We spent the whole day in the clinic. He saw the surgeons, had a chest xray, had an echocardigram, saw the oncologist and had his MIBG injection (through his broviak). He is recovering well from a surgical standpoint.

His bone marrow aspirates and cores were all negative for neuroblastoma. YAY! The tumor itself had parts with active neuroblastoma which we fully expected.

Tomorrow he will have his MIBG scan in the afternoon. He won't be able to eat after 7:00am so it wil be a long day of him begging for food. On Tuesday he goes back and will have a small IV placed in his leg just under the skin thet will remain in during treatment. They will administer a drug that way.

We hope to move to the apartment tomorrow but there is a big snowstorm coming so we will have to see if we are able to move or not. I put the new address on the page. We are planning on shipping a lot of things back to Colorado Springs and are not limiting our Christmas presents for the kids.

I am sure there is more info but I am brain dead now so I will write more tomorrow.

Wednesday, December 3, 2003

Wednesday, December 3, 2003 7:30 PM CST

Susan here...

Nathan and I had an adventure filled day. Luke left to go work and after breakfast Nathan and I hopped on a bus and sent to Times Square. There is a huge Toys R Us there with a ferris wheel inside. Nathan really enjoyed riding it and looking at all the toys. He picked out a Care Bear to give Julia for Christmas. After we left we had some lunch and took the subway to my Aunt's apartment. We went the round about way since shen we transferred I got on the train going the wrong way. I was too preoccupied in trying to find an elevator that I wasn't paying close enough attention. Nathan thouroghly enjoyed the bus and subway rides and I did too though carrying him, bags and a stroller up and down stairs in the subway was very hard. When we got to my aunt's Nathan excitedly told Luke all about our adventures. We hung out there the rest of the afternoon and Nathan didn't want to nap and so he was about to fall over by the time we got back to the Ronald McDonald House. He is now fast asleep.

On Monday I called the clinic to see what was up with his test being scheduled and had to leave a message and was not called back. I called again this morning and found out the the inpatient doctors were supposed to have scheduled all the test before they discharged him. So...his MIGB injection will be tomorrow and the scan on Friday afternoon (which means no food all day for NAthan...that will be awful). He also needs an echocardiogram and a cat scan of his head. Those will be done this week or next. Since they squeezed in the MIBG scan for Friday he should still be on schedule to start on the 15th unless his test results say otherwise. We are hoping to have some pathology results from the tumor and bone marrow they took during the surgery.

I have a feeling that between his surgery post-op appointment tomorrow and his infection appointment in the afternoon that we will spend most of the day in the clinic. At least we got a week's break from it all.

Tuesday, December 2, 2003

Tuesday, December 2, 2003 11:32 AM CST

Susan here - Luke wrote an update below but I just wanted to add that we have found an apartment to rent nearby and we will provide the address soon but meanwhile don't send anything more to the Ronald McDonald house address. There will be no trouble getting things people may already have mailed so don't worry about that. We will move in Friday evening.

*****************************
Luke here...Sorry it has been so long since our last update. I'm trying to recall how our weekend was and what went on, but I'm totally blanking on it. I'm sure there were several long walks through the city and daily fights with Nathan over making him walk. Overall, things are going well. Nathan continues to feel a little better everyday, but he isn't anywhere near feeling himself physically yet. He still complains about walking. I'm not sure if it is pain, fatigue, or just that he doesn't want to. We force him to walk everywhere inside the Ronald McDonald House and allow him to ride in the stroller pretty much everywhere else. We had a big fight about walking one morning this weekend. We had planned to take him to a big toy store, but we told him if continued to throw tantrums over walking around the room that he couldn't go. Well, he didn't end up going. The next morning he woke up telling us he "wanted to be a nice boy so he could go to a toy store". He did better. Yesterday was a good day for everyone. I have started back to work again. I'm working from Susan's aunt and uncle's apartment using their broadband connection. They continue to do such great things for us to make this trip easier. Yesterday Susan and Nathan spent the day here too and enjoyed the change of scenery and company. Nathan played with Joan and had a good time. Last night there was a Christmas dinner and party at the Ronald McDonald House. It was apparently the first of many. It was fun. There were prizes and gifts for kid and a meal. It was a little late for Nathan, but he handled it well and had a good time. He was lingering at the party and then we figured out that he was waiting for the cake. He associates "party" with "birthday party" in which there is always cake. He was a little disappointed but handled it well. He then lay in his bed playing with a horn he got at the party and talking, singing, and giggling to himself. It was great to see. That was very much like normal Nathan. He woke up in the middle of the night talking to himself about how sad he was about missing Colorado Springs and wanting to sleep in his own bed in Colorado Springs. That was sad to hear. Overall he is doing very well. We have no planned visits to the hospital until Thursday when he has a follow-up with the surgeon. Hopefully they will get us started with testing for the trial so we can start on 12/15 like tentatively planned. We are also nervous about getting the pathology reports from his tumor and bone marrows. They may be trickling back, but we haven't heard anything yet.

As always, thanks for following along so closely with Nathan's progress.

Saturday, November 29, 2003

Saturday, November 29, 2003 11:14 AM CST

Susan here...

I finally added new pictures to the photo album so take a look. We have had a good morning. There was a breakfast in the dining room this morning so we all went down and Nathan nibbled on a biscuit and seemed to enjoy himself. Afterwards he and Luke went to the drug store to pick up some supplies. When they got back Nathan just wanted to say in the stroller and so we all went for a walk. We went to central park and into a few shops. We tried to get some lunch at the end but Nathan said he was too tired and we came back and he went to sleep immediately. Luke and I are taking turns going out to get ourselves some food.

He is definately in better spirits today and feeling better too. He is still very tired and doesn't want to walk at all. We are trying to make him do so because it is good for him. After his nap we will probably make him walk around a little.