Wednesday, March 31, 2004

Wednesday, March 31, 2004 5:46 AM CST

Good morning...

Yesterday was a very different day. His pain during infusion was much more manageable for him. We actually got out of there by 1:30 pm. Unfortunately Nathan's pain continued until 6:30 pm. I spent much of that time sitting with him and massaging various parts of his body. I gave him more pain medicine around 5:30 because he wanted to go to bed. It seemed to perk him up instead of put him to sleep and he stayed up until 8:30 playing and eating. It was nice to see him have a little bit of fun even though I was exhausted by then and anxious to get him to bed so I could relax a little. Joan and I split a bottle of wine after he finally went to bed.

I have to keep this update short because I need to get ready to go. Thanks for reading!

Monday, March 29, 2004

Monday, March 29, 2004 8:10 PM CST

Well - long day as expected. We got to the clinic around 8:00. It was disorienting because the clinic moved and we didn't know where anything was and they changed the way they do some things.

We saw the doctor and I verified that there will be no bone marrow aspiration after this round so we will definitely go home after the last day of treatment.

Nathan didn't get treatment started until 2:00. The new patient rooms are under a glass ceiling and so it was a struggle to keep the sun out of his eyes and even in the shade the room was too bright for him. By the time he was done his head was under the tray table with a blanket draped over it. We got home around 5:30.

He had a lot of pain today. He had an extra dose of pain medication and I had to give him a dose tonight because when he woke up he was i a lot of pain. He decided to get up for a while but then the pain medicine put him to sleep in my lap and so I put him back to bed. I imagine he will be up some in the night. I am just hoping he can get back to sleep despite the pain.

I am tired...I'll try to do a better job with the update tomorrow.

Sunday, March 28, 2004

Sunday, March 28, 2004 7:00 AM CST

Hello from the big city..

We had a fairly uneventful trip yesterday and got to the apartment around 6:00 pm. My aunt Joan was already here and she got some groceries and after some dinner I put Nathan to bed and he went to bed without a problem.

No big plans for today - we'll see what Nathan has in mind.

Tomorrow will be a very long day. Nathan gets one of his medications by IV this time instead of a shot and so his days at the clinic will be 3 hours longer. I anticipate being there from 8 - 3 most days except that on Mondays everything runs late and so we may be there a few hours later.

I opened Nathan's suitcase up last night to discover that Julia had packed a pair of her pants. I had seen her get them out of the laundry basket but didn't know she packed them. She even zipped up the compartment. I miss her!

I will update tomorrow night - hope you all are having a good weekend.

 

Thursday, March 25, 2004

Thursday, March 25, 2004 7:41 PM CST

Susan here..

Not much going on really. Nathan went to the oncologist on Wednesday. They ran a few extra blood tests for some things which were all normal.

Nathan got a little bit of the illness we have all gotten but is doing OK. It is hard to tell what is going on with his bowels though. Speaking of that sort of thing - he is officially potty trained and wearing underwear without an accident. I didn't know if it ever would happen and it turns out he just became ready and did it.

He and I will leave for New York on Saturday. The weather looks to be crummy the whole time we are there. Meanwhile we have had sunny 70 degree days here in Colorado. Today we went to the park to enjoy the weather. Nathan was able to climb up several types of ladders - it was so good to see him able to do that. He is starting to move a little faster and not complain as much when he is walking places.

His weight is still the same. His doctor advised we up his appetite stimulant so we did and we will see if it helps any. HE really needs to gain a few pounds.

I updated our family web page. It is kind of rudimentary but fast and easy to do so that was the most important thing.

I'll probably update again after we get to New York.

Tuesday, March 23, 2004

Tuesday, March 23, 2004 12:10 AM CST

Hello...

Well - where to start.. We had a wonderful long weekend with our guests. There was much playing and a little crying done by the kids and lots of talking amongst the adults. Nathan did pretty well. His energy was decent but he did have some bowel pain.

Saturday we went to Manitou Springs. There is an old fashioned penny arcade there with lots of coin operated rides for the kids. We spent several hours there and had lots of fun. (see pictures in previous entry)

Sunday we mostly stayed home and the kids played inside and outside.

Monday Julia woke up sick and not much later I realized I was sick as well and I took to bed. Julia felt better but I stayed in bed all day. I missed a Barenaked Ladies concert I had been looking forward to - but I did spend all day alone in bed and while I felt bad - there was definitely a bonus in having all that time to myself.

Today Matt, Beth, Ethan and Margot left. I took the kids to Tammy's for daycare and Luke took to bed sick. Nathan seems to have just a slight touch of the sickness but he is doing just fine.

An update on the driver's license saga - yesterday while laying in bed it occurred to me that I had recently gotten a new license since my old one expired and I still had my old one. Luke went down to the basement and found it and I now have photo ID. This is a huge weight off of my shoulders. As far as flights go - I am waiting for Corporate Angels to call me back. They may have a flight on Sunday from Aspen. They had a flight tomorrow to Newark but I did not want to leave that early. I hope to hear something later today about that.

The HAMA test is being run today. If it is positive I expect to receive a phone call this evening. I don't expect it but wouldn't mind at all if it happened at this point.

So - Nathan and I will leave Saturday or Sunday for New York. My Aunt Joan is going to be coming to help us out while we are there for the first week. My mom will come the second week. I am so thankful for the help because I know I could not do it alone again this time.

Nathan goes to the clinic for blood counts tomorrow. We are not expecting much from the visit. Check the photo page later - I will try to put some new pictures up.

Saturday, March 20, 2004

Saturday, March 20, 2004 4:14 PM CST

Hello - sorry for such a long delay. We have just been enjoying my cousin and family and have not thought about updating.

Thursday we went out early and sent off Nathan's blood sample to New York. Afterwards we went and got the necessary documents and went to the DMV. I got a new license BUT they do not print the actual license on the spot and so I have no photo ID. I can't imagine the trouble I will have at the airport UGH! I think we will have to get round trip tickets just so we don't look as suspicious. We will know Tuesday evening if Nathan has a HAMA but we are not expecting that to happen yet.

The kids are having lots of fun. Nathan is not playing with them all much but I think he does enjoy the company. He is still in pain. It is not so bad but still there.

We got the newsletter from Brent's Place and were very sad to see that 3 of the kids we knew from there and from the unit have passed away. One of the others is not doing well. It is just horrific.

I guess I don't feel like updating much more - I will catch up with the rest of our weekend when I update next.

Wednesday, March 17, 2004

Wednesday, March 17, 2004 6:33 PM CST

Hello -

Today Nathan and I got up very early and headed off to Denver. We arrived early and so did the doctor so he brought us right in to an exam room and got started. He thinks Nathan most likely has damage to the walls of his intestine caused by all his treatments. This damage can repair itself but since Nathan has had treatment upon treatment without a chance for it to recover he is still healing. He thinks the recent change in his stools is a good sign that things are getting better. He also thinks Nathan might have an overgrowth of bacteria in his bowel and we are going to give him a medication for that.

For the other problem - to provide relief for now we are going to give him fiber twice a day mixed in with a drink, lactaid before every dairy product and beano before every meal. This damage he has makes his body unable to digest sugars and starches. I am crossing my fingers that these medications will help. He will now be taking about 14 pills a day and a liquid medicine 3 times a day. So far he has done well today. I got him the lactaid as a chewable. The oral medicine reportedly takes awful so we might switch that to a pill form as well. I went to get the liquid filled and they didn't have it and now I have lost the prescription so I will have to do something about that tomorrow.

After Denver we went out to lunch and then Nathan had a nap. I woke him up and he went to the clinic for blood counts. He is still anemic (no surprise ) and so they gave him something for that. We left the clinic and got Julia and are now relaxing before bed.

Tomorrow I have to draw Nathan's blood for the HAMA test and Fedex it to New York.

Just to add more things to my plate I must have lost my driver's license on the plane home so now I have to go get documents out of the safety deposit box and find some kid free time to go wait in that FUN line. I need my license before I get back on the plane to NY. I am feeling quite overwhelmed. The house is a mess - I am many months behind in organizing financial things - dealing with medical bills - I have several projects around the house that really need to be done. Argh! I want to spend time with the kids but when I am with them I am always doing two other things at once. Well - enough complaining....someday I suppose I will catch up. I just really wish I hadn't lost my drivers license because I am going to lose half a day taking care of that.

Nathan has been giving me lots of hugs today - I suppose I look like I can use one - he is so sweet.

Tuesday, March 16, 2004

Tuesday, March 16, 2004 2:22 PM CST

Susan here...

Well - I had a nice relaxing trip though it was WAY too short!

Sunday Nathan was in a large amount of abdominal pain. It subsided after a while and they had a good rest of the day. Monday while they were at day care he had another episode. Today he hasn't had severe pain but some moderate pain throughout the day. We have an appointment with a Pediatric GI doctor in Denver tomorrow morning. In the afternoon he will go the the oncology clinic.

Luke is going on a business trip tomorrow and will be back Thursday night. Our friends/relatives Matt and Beth and family will be coming to visit on Thursday. We are very much looking forward to the visit. We are supposed to have really nice weather the next few days so hopefully we will spend lots of time outside.

I will try to update tomorrow night about his doctor visits. I don't expect much to happen yet. I have to somehow bring this new doctor up to date with Nathan's medical history and I imagine they may want to run some tests in the future.

Thanks to everyone to continue to keep up with Nathan and our family...it means a lot to us. Check in at our guestbook from time to time if you don't mind.

Saturday, March 13, 2004

Saturday, March 13, 2004 3:05 PM CST

Luke here...Things are overall going very well. Nathan had appointments at the audiologist and with his local oncologist this week. The results of his hearing test showed stable compared to his last test. If you recall, his last test showed hearing loss (as a result of the chemo agents) down into mid frequencies. We haven't actually talked to anyone other than a tech about this. Susan asked the tech administering the exam and she said Nathan probably has trouble hearing soft consonants like Ss ant Ts. We know that we have to really sound out some words for him forcefully at times. He may need hearing aids in the future in classroom settings and such. Obviously no big deal. No news really from his onc visit.

Susan left this morning for a weekend getaway with her aunts in Tucson. She is there now and has a relaxing weekend planned. The kids and I had a great morning. Nathan looked out and saw the blue skies and said, "It sure is a beautiful day today". If you know Nathan, you know he talks around things. He often won't come right out and say what he means. I recognized this immediately as, "Can we play outside?". We let it warm up and then went to a park. Nathan ran (as well as he can), swung (see new picture at top of page), and climbed on the toys and did the slides. He played hard for a half-hour or so which is really great for him. He was really worn out when we were done, but it was so great to hear him laugh and see him expending energy playing. Good signs. We got home and had lunch. The kids played by themselves and went down easily for their nap allowing me to watch a basketball game I wanted to see (Go Illini!). Tonight we are invited to friends' for dinner and really looking forward to it.

Thanks for checking in. I hope you all are having a good weekend.

Thursday, March 11, 2004

Thursday, March 11, 2004 8:02 AM CST

Good morning,

Yesterday was a better day. Nathan woke up in a great mood and was playing and smiling. After a while he said his tummy hurt and he wanted to go to bed. He slept for about 2 hours and then I got him up to go to his hearing test. On the way there he threw up all over himself. We rescheduled and came back home. He seemed to feel really good at that point and had a good afternoon. Don't really know what it was all about but he did eat a very large volume of food in the morning so maybe it was too much for him to handle.

Today he has an appointment at the oncology clinic just to check in there and after that he will have his hearing test.

Yesterday I booked myself a weekend trip to Tucson (to my aunt's house). Though I really don't want to be away from Julia and Luke again I really need some time off. I am leaving Saturday morning and returning Monday afternoon.

I have really been enjoying my time with Julia. We got some good playtime while Nathan was napping yesterday and she is such fun. Nathan and she are very different, and with Nathan going through what he is - he is such a serious reserved child (though I can't blame it all on his illness since my personality is also similar) it is refreshing to be around a vivacious child.

I will close with some excerpts from his scan reports that keep me going and make the antibodies worthwhile

* Normal CT of the brain

* Normal CT ( cat scan) examination of the orbits

*Status post upper abdominal resection of soft tissue mass - No evidence of recurrent or residual disease

* MIBG Scan - There is no significant interval change since the last scan of December, 2003 - Negative MIBG scan showing no evidence of tumor recurrence

Tuesday, March 9, 2004

Tuesday, March 9, 2004 7:47 PM CST

Home!

The trip home was Ok. I got very carsick on the ride to the airport but didn't throw up. I felt very very bad when we got there and had to sit down for a while before proceeding to the gate. Nathan was pretty well behaved and did well on the plane. I was exhausted and had to tell him to let me doze a little.

We hopped into the car and the kids were asleep when got home and we put them straight to bed.

Today started out pretty rough. I was up at 5:00 am due to the time difference and feeling awful. About a half hour after Luke went to work Nathan was whining and crying about something and I realized I could not deal with him at all. I was DONE. I went and got him and he took the day off. We ended up having a pretty good day together. Hopefully I will be able to deal with Nathan tomorrow.

Tomorrow Nathan has a hearing test and he will go to the clnic for a check up on Thursday.

It is bathtime - got to go.

Monday, March 8, 2004

Monday, March 8, 2004 9:37 AM CST

Done with all medical stuff! We are packing and doing laundry. Last night was rough as Nathan woke up at 4 am and wanted his water and I was told not to give him any and so I said no and he screamed for 45 minutes. This morning he whined and cried about no drinking and eating until we finally got things going at the hospital. They got us in quickly and we were done by around 10:00. This give us a little breathing roomm before we have to leave. Nathan is happily eating a chocolate donut and drinking milk and watching Blue's Clues.

Saturday Nathan wanted to go to the playroom and paint but it wasn't open yet and so we went to a coffee shop and had breakfast. Afterwards he painted and played some. We went out to browse a small toy store and then out to dinner to have some pizza.

Yesterday we got up and went to McDonald's for breakfast and then got on a subway and rode for and hour and a half to Coney Island. After lunch at the original Nathan's Famous we went to the New York aquarium. Nathan had a great time looking at all the exhibits. He told me his favorite was the penguins. He liked the sea otters a lot as well. After the aquarium we walked down the boardwalk and I got Nathan some cotton candy. It was the first time he ever had any and he seemed to like it but didn't eat too much. We got back on the subway and dozed and arrived back at the room around 3:30.

After a little rest we brought some things to my aunt's appointment to store there and then had some dinner and milkshakes for dessert. When we got back Nathan was ready to go to bed after our long day.

So we are off to the airport in a little while. We can't wait to get home!

Saturday, March 6, 2004

Saturday, March 6, 2004 6:32 AM CST

Well - antibodies are finally done for this trip! Yesterday went OK. No major events. The moment Nathan gets his dilaudid (narcotic) he is cranky. It is instantaneous. He just seems to have developed that as a response as he has done with numerous other medications.

We were back at the room by noon and he slept for an hour or so. After ordering his some lasagne (his new favorite food) we got a call from the hospital that we should be there at 10:00 on Monday for his bone marrow (this would make his appointment at noon). He was supposed to be there at 7:00. The woman said there was a schedule change and I told her I had a plane to catch and so she said she would try. We got off the phone and I was upset and worried about it since they always run behind. Since Nathan and I were going out anyway we just walked over to the hospital and I went and talked to her. He is scheduled for the procedure at 10:00 which even if they are an hour late should work out. She knows my situation and it should be fine.

Afterwards we got on the bus and went to Times Square. Nathan had been asking to go there and was excited when he saw it out the window and realized that was where we were going. We went to Toys R Us and I had told him he would have to walk there and he did great and walked for most of the time.

His energy is up a little and so is his weight. He has definitely gained some weight and his legs are not nearly as spindly as they were. The bowel problem seems to be a little better but we will have to wait and see what happens after he is off the narcotics for a few days since that is constipating.

Not sure what we are up to today. We bought a little wooden train set for him to play with. There is a little girl from his Grandma Kathy's church who saved up all her change all summer and then decided she wanted to send it to Nathan and so we used those funds to buy the train.

So I think we will mostly stay in today because it is raining. It is nice just lazing around this morning.

Thursday, March 4, 2004

Thursday, March 4, 2004 7:51 PM CST

1 more day to go!!!

First off - scans are fine. I don't have the written reports yet but the doctor let me know.

Antibodies went ok. We gave him his pain medication too close together and he kind of conked out and his oxygen went low but we got him right back up. When it was time to go he screamed about leaving (as usual). I didn't handle it all that well and got quite mad at him when we got back to our room. I was trying to get the stroller through the door and he was yelling at me to open the door all they way and I just lost it and yelled at him. I am doing my best - but my best isn't very good right now.

The rest of the day after his nap went OK and now I am too tired to go into more detail.

Wednesday, March 3, 2004

Wednesday, March 3, 2004 4:09 PM CST

Hello -

So we got up early to start the day. While I was drying my hair Nathan came in and wanted to practice the scan and so we scanned his stuffed animals. He did really well during the scan. He had to lay still for over an hour. We had a movie playing for him and he complained a little about how long it took but did great. Afterwards he got to pick out a toy from the playroom to have. He chose some play tools.

During the scan I could see a very bright spot on the left side of his abdomen. The tech called in the radiologist and they flused his line. They could see the isotope in his line which is on his left side in his chest. I was still very worried about the other spot and when we got upstairs I asked the doctor to take a look. He looked at the scan and asked me about his broviak. He thinks it looks like the cap on his broviak. He said it was almost too well-defined to be anything else. His broviak end was tucked in the left side of the waist band of his pants. The CT scan results of his abdomen and pelvis were not in yet to compare to. The CT of his head and orbits is normal. So - tomorrow I should have the definitive answer but it will hopefully be fine.

His antibody therapy went better today. He had a few minutes of nastiness but not too bad and his blood pressure stayed fine. Afterwards we came bak and he slept for a while. When he woke up he wanted McDonalds and so we went off to get some and I got myself some food at a coffee shop and came back and ate. We ran into some friends whose little boy is also undergoing the same treatment and we sat out on the terrace with them and then went off to a Hallmark shop for a few minutes. They invited us to dinner with them and their uncle tonight. After some playtime in the playroom we met them and went to a barbecue place and had a good dinner. Nathan was very well behaved and ate pretty well. The other little boy, Garrett, did well too and his mom Mary Ann and I both had frozen apple martinis to drink which were very yummy.

It was nice to have some company (and good company at that!) for quite a bit of time today. So - 2 days left and 5 days until we are home.

I'll update on scan results tomorrow.

Tuesday, March 2, 2004

Tuesday, March 2, 2004 4:30 PM CST

Well - the CT scan went OK. I got him up early and he had breakfast. Afterwards I mixed the scan contrast with ginger ale. He didn't mind the taste but was intimidated by the amount and so I have it to him by syringe full over about a half and hour. We went to the clinic and he was weighed and then downstairs for the CT scan. After waiting a few minutes the tech came over and told me he would be having just his head and orbits (eye bones) scanned. I told her that he had already had oral contrast and since he had had an abdominal tumor I was certain they wanted that scanned too. After about 45 minutes they got the appropriate orders written up and he finally had his scan. All the waiting was hard on him. He did really well for the scan.

We went right up for antibodies and all was going well until shortly before his pain came when he wanted to sit up (which is not normal) and he was very angry that his TV didn't reach when his bed was up all the way. He really lost control over it screaming at me and trying to hit me. Then his pain came and he once again screamed at me to help him and every little thing I tried just made him madder. During all this they took his blood pressure which was very very low and so they had to give him lots of fluids. I finally had to leave the room because I couldn't take his yelling and fussing at me. The nurses were so surprised to see him act that way because it just isn't normal for him. He is either so very fed up with it all or having some kind of reaction to some drug. Most likely it is emotional.

We came back to the room and he slept for a while and then we went downstairs where they had coffee and cookies. After that we went to have his MIBG injection. When we got there we realized he hadn't had a medication he needs to protect his thyroid so we had to go back up to the clinic and wait around for that. He got his injection and one of the other children was there practicing with the child life specialist for his scan tomorrow. She offered to practice with Nathan too. He didn't want to but we put a stuffed animal in the machine. She is going to come for his scan tomorrow to help. The techs seemed worried about him doing it without sedation. I really think it will be OK when it comes down to it.

Nathan is now watching a movie and eating and in pretty good spirits. Tomorrow will be another trying day. 3 more to go.....

Monday, March 1, 2004

Monday, March 1, 2004 12:45 AM CST

Hello - we got through today's treatment - 4 more to go.

I'll back up to yesterday. In the morning I met my friend Louise and had a good time chatting with her. In the afternoon after packing and cleaning my cousin Laura came to help us move. Nathan was in a lot of pain from his bottom. It was the worst I have ever seen. He was just screaming at me to help him get rid of the pain and he lay on the floor thrashing around. He got all worked up and was very sweaty and then was very upset about that and wouldn't listen to any of my suggestions to help. I finally called Luke on the pretense that he could help and Nathan calmed down. I got off the phone and told him Luke said to try a cold wash cloth. That calmed Nathan right down and he was ready to go. It has been awhile since he has been quite so hysterical. I really couldn't tell if I needed to take him to the hospital or if it was "just" pain and a tantrum all rolled in together. I decided it was the latter because he could speak logically to me in bits and pieces throughout the fit.

We went off to the Ronald McDonald house. The room this time is very clean. After dumping our things there we went to the East Village with Laura to meet her boyfriend and his son for dinner. We had some really good pizza and we all enjoyed ourselves.

Sleeping didn't go so well last night because it was sweltering in the room. I finally opened the window around 11:30 and it started to cool off but Nathan was throwing a huge fit about being sweaty and all I could tell him was that I was hot too and I was trying to cool it off. He has gotten into a phase in the last week were he will scream at me telling me to fix something or make something better and usually it is out of my control and I can't do a darn thing and I try to tell him and he just continues to scream at me over and ove to make it better. It is extremely frustrating and upsetting.

The upside to the late night episode was that I was wide awake after that and flipped on the TV in time to see the major awards given out at the Oscars and then went back to sleep.

So we were off to the clinic this morning and it went pretty well. Tomorrow will be very trying as I have to wake him up early and force oral contrast in him for his cat scan. He can't eat or drink anything after I do that. It will be a long screaming morning. Later in the afternoon we will go back to the hospital for his MIBG injection. It will be in his broviak so is no big deal. Wish us luck with our morning tomorrow!