Saturday, January 31, 2004

Saturday, January 31, 2004 7:27 PM CST

What a busy day we have had! We lazed around some this morning and then got on the subway and went to Johnny Rockets for some lunch (in the east Village). Afterwards we got back on the subway and went to the lower tip of Manhattan and got on the Staten Island Ferry. There were some fabulous views of Manhattan plus the ferry goes right by Ellis Island so we got a good look at the Statue of Liberty. We got off in Staten Island but got right back on and went back to Manhattan. Nathan thoroughly enjoyed all of that. We went back to the apartment and Nathan had a little nap. We then made pumpkin pie (which Nathan has been begging for us to do since it is his favorite) and I had an unfortunate accident removing it from the oven and half of the filling ended up in the oven. It is still partially edible though.

This evening we went out to dinner with John to a restaurant around the corner and had a good time. Nathan threw a big fit before we left meet John - not because he didn't want to go but he was just so tired he couldn't control himself anymore. After his fit he was just fine and had a good dinner.

I am so tired now but also so glad we filled up our day in such a fun way.

Hope you all are enjoying your weekend as well.

Friday, January 30, 2004

Friday, January 30, 2004 6:48 PM CST

We are done! Whew! Good to have another round finished. Today's treatment went ok. Nathan had a little more pain than usual but no medical events.

Nathan had a good nap when we got home and after a meal of spaghettios we went to Best Buy and then to a coffe shop. Nathan had a cookie as big as his head (didn't eat it all) and I had a light dinner. We both enjoyed the outing.

I have some ideas for outings this weekend. We are going to try to keep busy and have some fun. I'll let you know what we end up doing.

Next on the medical front is a bone marrow aspiration on Monday and then starting accutane that evening. The accutane will cause cells to mature that may otherwise become cancerous. He will have to take two capsules in the morning and 1 at night. I don't know yet if he will be able to swallow them or if I will have to extract the medication from the capsule. IT is better if he can swallow it.

Thursday, January 29, 2004

Thursday, January 29, 2004 7:08 PM CST

Luke here on Friday morning. I'm top posting to Susan's update from yesterday. Susan posted a bit about Julia's rough night and lots of people have been asking about how she is doing, so I thought I would post a little. Overall she is doing wonderfully and coping very well with Susan and Nathan being gone and her first two weeks ever in day care. We have easily had more good evenings than bad ones. True, the bad ones are really bad, but we deal and she bounces back. She has a really good time at day care and we feel very lucky to have found the woman who is caring for her. It really is a good environment for Julia. It ia all so new and she misses Susan and Nathan and sometimes it is rough on her. Her trend seems to be to need a little emotional breakdown each day. If she has it during the day at day care, it lasts fifteen minutes or so and she gets over it. It is worse for her and I if she gets through the day without a meltdown. On those nights she has a major meltdown that can last a long time. I can understand her need to let out some of that frustration and we deal and she gets up and goes happily to day care the following mornings. Thanks for your concerns. Overall she is doing very well. We just can't get around the fact that this is hard on all of us in different ways.

*********************************

Another good day. No unusual medical reactions. At one point during his pain he said "mommy - I am not doing very well today" but he dealt with it well. Poor thing feels like he can't breathe. Today we had a little fight about the oxygen which was solved when he decided to hold it. We got a late start to the hospital this morning but got treatment started earlier than ever. The other families doing the same treatment told me that we didn't miss much that they had moved from one chair to another and even tried the couch this morning. We all sit and wait together every morning. Then we all go in our rooms at 9:00 even if they havnen't called us yet and usually someone will get the kids hooked up and on the way.

Nathan had a good nap afterwards and then we went to the grocery store.

Don't know about Julia's day yet but Luke and I are feeling better about it all and have been reassured that it is a normal reaction to a new situation.

Only one day left....what a relief! I made a call tonight about the next round of shots and Nathan asked me what I was talking about on the phone so I told him and said that tomorrow he would get his last shot for a few weeks. He said "Mom - that makes me so happy" then he said "shots hurt". He has actually been so amazing this week with them. Not a word about them or even a flinch when I poke him. He is so good at coping with things...I could learn alot from him. I suppose I have.

Wednesday, January 28, 2004

Wednesday, January 28, 2004 8:05 PM CST

well - today was better. It was a more normal day as far as how Nathan reacted to his treatment. There was quite a bit of snow this morning. The sidewalks were not clear in many places. We didn't see any cabs and so I headed in the direction of the bus stop where the sidewalk was clear and we took two buses to the hospital. It actually didn't take all that long and we arrived on time.

Nathan had a nap when we came home and woke up pretty happy. We played a game of hide and seek and did some sticker books.

Luke called me this evening...Julia was having yet another screaming fit. She has been upset when they get home for the evening a few times lately. She cries for hours and hours. We don't know what to do about it. She has been through a lot lately and we thought this was going well but she is obviously having a harder time than we thought. It was so upsetting hearing her cry and that I could not just go pick her up and give he a hug and try to make her feel better.

On that note - Nathan and I will not be able to go home until Tuesday morning...this is not the best news but it is the way it has to be and so we are resigned to it. We have no choice but to get through all of this the best we can. It is alot of work to not let it get us all down. Julia is probably the only one of us who doesn't know how to hold it in and is expressing what the rest of us are feeling.

It could be worse though....

Tuesday, January 27, 2004

Tuesday, January 27, 2004 7:18 PM CST

Well - we have had two rough days...

Monday Nathan had trouble with his blood pressure. For a good while they couldn't read one at all but he was talking to us during it all. Mondays are so bad at the clinic - finger sticks, late starts, plus I didn't like the nurse we had. After we got home Nathan didn't want to nap but chilled out in front of the TV so I got a little break.

Today was even worse. He had to have a finger stick and they did that right before his pain came and then he got another dose of narcotics and immediately swelled up and started gasping for breath. They upped his oxygen and his levels were fine but he struggled to breath and I think it really hurt him. He kept saying he didn't want to breath because he couldn't during his pain. He started crying and didn't stop for an hour and a half. He finally stopped on the way home and then went to bed. When he got up he was still very puffty -- one of his eyes was half closed. I called the clinic and they felt it was just fluid and the fact he had been sleeping on that side. After he got up and around the puffiness reduced. We went to John and Judy's for dinner (my aunt and uncles friends who live in the same building). That helped to end the night on a good note as we both enjoyed ourselves and had some delicious food. Nathan was very pleased that he got a cupcake for dessert.

We are getting a major snowstorm currently. We are supposed to get up to a foot of snow. It will be an adventure making it into the hospital tomorrow.

Sunday, January 25, 2004

Sunday, January 25, 2004 7:39 AM CST

Yesterday we had a good day. We woke up and hung around for awhile. Around 11:00 my Uncle Ted and Aunt Carolyn picked us up and drove us back to their house in New Jersey. Nathan played with some toys and we had some lunch. Later in the afternoon we went to the mall and Nathan rode on the Merry go Round and had a pretzel. After dinner we came back into the city and as it was late Nathan went right to bed. We both had a really good time.

Today we plan to go to Times Square so Nathan can get Julia a birthday present at Toys R Us. It is currently only 11 degrees and so it will be a bit of a chilly outing.

Friday, January 23, 2004

Friday, January 23, 2004 6:42 PM CST

Last night was a bit rough as he woke up at 4:30 am and yelled "mom, it's morning!" I told him it wasn't and then he had a dirty diaper and then he went back asleep for a while and woke up again at 6:00 and told me it was morning. When he got up he wanted the rest of his McDonald's cheeseburger for breakfast so I gave it to him and turned on the TV for him and I went back to lie in bed for a few minutes.

Today was a good day. It was very cold this morning. We caught a taxi at least. He got started fairly early and he had much less pain today and got over it pretty quickly. As we went home he requested I go get him some things at the grocery store. He took his usual nap and then ate. After a while he wanted to go somewhere and so we walked to Best Buy and browsed around. I got him a Sponge Bob DVD.

He spent this evening watching the DVD and eating and then we had a bath together and squirted each other with bath toys.

Tomorrow we are going to my Uncle Ted and Aunt Carolyn's house for the afternoon. They are driving into the city to pick us up (they live in NJ just outside of the city).

On a sad note Luke told me that he awoke this morning to Julia saying "I want my Mommy back!" repeatedly in her crib. I think she is doing OK but just missing me. It will be good for her to be home with Luke all weekend. As the week progresses she has been more and more emotionally upset.

Luke sent me flowers and Nathan balloons today - which made us both very happy.

Thursday, January 22, 2004

Thursday, January 22, 2004 12:29 AM CST

First off I need to say....

Happy Second Birthday Julia! I am sad I cannot be with her today.

Nathan's treatment went as usual today. Unfortunately (or not?) we arrive an hour late after not being able to find a taxi and the subway was too crowded to go down the stairs so we took a bus. As it turned out we were home by 12:30 which is about as early as it gets. I didn't feel too bad that we were late considering how much we have had to wait for them!

I will put a picture or two of Nathan in the photo album showing off his new hair.

 

Wednesday, January 21, 2004

Wednesday, January 21, 2004 3:04 PM CST

Hi - sorry I didn't update yesterday. Treatment went as well as could be expected and we left around noon. Today treatment was delayed (long story) and so we got out of there around 1:00. Nathan wanted to go to McDonalds but he was so drugged up he just sat there. Hopefully he enjoyed going despite his condition.

I suppose there really isn't much to say about the last two days of treatment. He has pain, his heart rate soars and he deals with it. Today his hear rate was in the 190's. His resting heart rate is around 100 (remember kids have faster heart rates). It was that high for at least a half hour and was in the 150's when they let us leave. When his pain is the worst he just closes his eyes and I have to hold his oxygen and put the other hand on him and then I cannot move a muscle. I am usually like that for an hour.

We don't know exactly when we will be able to go home. We might need to stay an extra weekend in order to get a bone marrow aspiration done. I'll let you know when we know something.

Monday, January 19, 2004

Monday, January 19, 2004 3:48 PM CST

All is well in New York. On Sunday we awoke to nasty weather..freezing rain, rain and snow all day. We ventured out to buy groceries and even though I told Nathan it was too nasty to go out again he was begging me to ride the subway. My cousin Laura called to invite us to her place in Brooklyn and so we decided to go. Nathan enjoyed the ride but was out of sorts while we were there and kind of anti-social. Afterwards we went to friend's of my aunt's who live in the same building (we stayed with them for a few days before) and we had a very yummy and relaxing dinner with them. We came back to the apartment and Nathan went to bed.

This morning I had to wake him up. I had warned him last night that I might have to do so and so when I woke him up this morning he said something to the effect of "see, sometimes I am happy when you wake me up" and was quite cheery. We took a cab to the hospital. It was very cold and icy out. We had to hand around for a while since it was Monday. He also had to have his blood drawn through a finger prick. I let him know about this before hand and he proceeded to cry about it until they finally did it.

He got settled in his bed but we still waiting forever for the antibody. The pain wasn't too bad today. He handled it really well and we were out of there by 1:00.

While we were there I overheard a mom talking about her child who relasped after 8 years in remission...ugh!

He slept the whole way home on the subway and walking and went right to bed when we got back. He got up around 4:30 and he seems pretty good now...just watching a little "sponge bob". I got to relax and do some straightening up while he was asleep and so it was good time for me.

I might try to borrow a digital camera so I can post a new picture. His hair is long enough to look a little unruly. It is still thin but really has grown. It looks to me like it might be curly.

We fo back tomorrow at 8:00. Thankfully we are on the "early shift". This works better for Nathan's schedule. If we didn't go right away in the morning he would spend the whole time anticipating leaving.

I got an email from Julia's sitter with some pictures and it sounds like she is having a really good day and doing just fine.

I'll update tomorrow.

Saturday, January 17, 2004

Saturday, January 17, 2004 7:49 PM CST

Hello from New York - we had a pretty easy trip out. Everything went smoothly and Nathan was very good. We got to my Aunt's apartment (we are staying there while they are wintering elsewhere) and Nathan had some dinner, watched TV had a bath and went to bed without a fuss.

Tomorrow we will get some groceries and basically whatever Nathan feels like doing.

OH - I should add that the only hard part of the day was in the airports walking because we didn't have a stroller (it is here in New York) and Nathan doesn't walk for very long and he also walks VERY slowly. I carried him a little but it was difficult. I would really like for him to regain some strength. He acts like an old man when it comes to doing anything physical.

Julia is reportedly doing fine. She was upset when they dropped us off at the airport but got over it after a while. We have been prepping her for this all week and it was so sad because she'd tell me she wanted to go with me and cry. This morning she didn't want me to leave her sight. I miss her already!

Thursday, January 15, 2004

Thursday, January 15, 2004 7:40 PM CST

Susan here..

Well - no corporate flight this time. In fact the office was closed today due to the extreme cold in New York. I booked us a flight for Saturday. At least we get a few extra days at home.

Nathan went to see his oncologist yesterday. His platelets were very low..almost at transfusion level. The Dr. thinks it is due to him having a cold. We will keep an eye on it. He didn't gain any weight on the IV nutrition - but he didn't lose any either!

We have started his shots. It was a big pain getting the medications but we have them and he is doing well with it.

I have been running around like crazy the whole time we have been home and there is still a decent list of things to do...I hope it is better next time we are home.

I'll try to update by Sunday at the latest.

Wednesday, January 14, 2004

Wednesday, January 14, 2004 9:12 AM CST

Susan here...

Well - the corporate flight was cancelled and so they are still looking. Seems like we will probably be flying commercially. At least that will give us a few extra days at home.

Nathan finished radiaion yesterday. He was such a good boy and did a great job. The techs gave him a tow truck, a bi truck balloon and a stuffed animal puppy. They gave Julia a Teddy Bear. Nathan also got to ring the "finished with raiation" gong.

Today we will go to the clinic so he can get some blood drawn since he has been on the IV nutrition and they have to check it.

This morning his GM-CSF shot supplies should arrive (they'd better!) and he starts his shots.

Yesterday after radiation in the morning we went to Krispy Kreme and had some doughnuts. The kids both chose doughnuts with chocolate frosting and blue sprinkles. Julia tore right in and made a big mess - Nathan nibbled his very daintily and kept clean. They are SO different.

I had to wake them both up from naps to go in the afternoon. They were both crying and very cranky.

Well- keeping my fingers crossed for a corporate flight but it doesn't look good. I'll let you all know what happens.

Monday, January 12, 2004

Monday, January 12, 2004 8:35 PM CST

Susan here...

Well - one day of radiation to go and Nathan is still doing wonderfully. We need to pop into the clinic for blood tests tomorrow or Wednesday (because he is on the IV nutrition) and he also starts his neupogen injections Wednesday morning.

It looks like we probably have a corporate flight Thursday afternoon. We don't have to be in New York until Sunday night but we'll take the corporate flight anyway. We are all a little sad about being apart for 2 weeks. We will manage though. I have found a good home daycare for Julia while Luke is working.

We should know about the corporate flight for sure tomorrow.

We are also still awaiting the results of Nathan's blood test to see if he has developed a HAMA..what follows is an explanation of HAMA from The hospital's web site...

What is HAMA?

HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from a mouse white blood cell; this means that 3F8 looks different from a human antibody and a human will form antibodies (HAMA) against 3F8. If a patient has HAMA, there is no point in administering 3F8 treatments because the HAMA will block the 3F8 from getting to neuroblastoma cells. However, HAMA can disappear; when that happens, we can resume 3F8 treatments. We check for HAMA by a blood test. Patients with HAMA do not have pain or other side effects of 3F8 treatment, but patients without side effects sometimes do not have HAMA (and can continue to be treated with 3F8).

Is HAMA good or bad?

HAMA might be a sign that a patient is developing an immune response against the neuroblastoma -- and that is a good thing. It is probably best that a patient receive at least four cycles of 3F8 treatments.

Most patients who have received chemotherapy only a short time before 3F8 treatment do not make HAMA because their immune system is too weak. In Memorial Sloan-Kettering's protocols, our aim is to give repeated treatments with 3F8 until HAMA is made. It appears that the best chances for cure exist when multiple cycles of 3F8 treatment are given and the patient begins to form HAMA. We continue to study HAMA to gain a better understanding of its role.

We do not expect Nathan to have developed a HAMA yet - but if he has we will not go back to New York for treatments next week.

We'll let you know of any developments tomorrow.

Saturday, January 10, 2004

Saturday, January 10, 2004 2:20 PM CST

Susan here...

Just a quick note to let you know there are new picture on the family web page (see link below). Click on either November or December.

The kids and I are just hanging around today while Luke is skiing. I am slowly getting over my cold. The house is a WRECK due to twice a day radiation trips and my feeling bad. I hope to escape the house after naptime. Nathan wanted to stay home this morning and I certainly didn't blame him!

Friday, January 9, 2004

Friday, January 9, 2004 8:19 AM CST

Susan here...

Radiation continues to go just fine. No nausea or vomitting. It does tire Nathan out a little. The people there are great. The biomedical engineer who works on the machines has taken a shine to Nathan and brought him a cool race car/flatbed truck toy yesterday. He was a little down until that point (in fact I left Julia at home because he seemed to need some extra attention) and when he got the toy he perked right up got off of my lap and was fine.

We went to see his local oncologist yesterday afternoon. His weight was down a little more. He is very skinny. We decided to put him on IV nutrition to help beef him up. He started last night. His red blood count is also alittle low (not low enough for transfusion) so he was given some medicine to boost that up in hopes of increasing his energy level. He got a nice big metal dump truck from the clinic staff for Christmas.

Our car is back (driveable but not fixed all the way) and Luke will try to fix the garage door on Sunday. He is going skiing with my brother on Saturday which is something he is looking forward to.

We haven't heard anything yet about if Nathan and I have a flight on a corporate flight next week. I really hope they can find one.

Wednesday, January 7, 2004

Wednesday, January 7, 2004 8:14 AM CST

Susan here..

Radiation went well yesterday. Nathan continues to do wonderfully and holds very still and is not at all bothered by the process. What he hates is waiting to be called back. He has had to do so much waiting in the last few months. He does remarkably well for a 3.5 year old. He has still not had any nausea or vomitting.

So we are off again twice today. Nothing exciting! We don't know when our car will be fixed but we are fine with one right now anyway. Tonight I am going to a get-together of other moms from Nathan's oncology clinic. This is the first time they have done this - I am looking forward to it.

Thanks everyone for their thoughts and prayers. So far radiation is one of the easier things Nathan has done.

Monday, January 5, 2004

Monday, January 5, 2004 6:35 PM CST

Susan here...

I forgot to mention that yesterday was Day +100 since Nathan's stem cell transplant. This is a milestone used in assessing the patient's immunity. Since it is cold and flu season I think we will have Nathan continue to wear his mask in very crowded enclosed places.

Radiation went well today. Getting to and from radiation was a different matter but I'll get to that....

We went in at 8:00 and they did a series or xrays and repositioning and it he had to lay on the table for about a half an hour or a little longer. He did great and was very still and wasn't upset about it at all. He had no nausea or vomitting yet but that could still come.

We went back in at 3:00. They were running behind and so we had to wait and he was unhappy about that. This time the radiation took only about 10 minutes. I brought Julia with me and that went well and so I will probably bring her most times so Luke can work. It takes a half and hour or so to and from so it takes a big chunk of time away from Luke working.

As far as coming and going... I was very cold last night (single digits) and as I tried to open the garage door it seems to have frozen to the ground and it pulled the harware and a large board off of the garage door instead opening the door. Luke came out and openening it manually and so we will have to try to fix it.

On out way to the afternoon session I hit a slick spot on a side street and ran into the curb. We were almost at the hospital and so I continued and parked but the wheel was very crooked. I called Luke and he came and we called a tow truck. We had to leave the car there because the tow company was very busy. So I broke the garage and car today. In the big picture it is no big deal.

So we are back to radiation 9 and 3 the rest of the week. I am crossing my fingers that Nathan doesn't get sick from it.

Sunday, January 4, 2004

Sunday, January 4, 2004 3:04 PM CST

Susan here...

We have been having a good weekend. Yesterday we awoke to snow and it snowed all day. Nathan wanted us to go out and shovel the driveway so after breakfast we got all bundled up (it was a wind chill of 3) and went outside and he helped shovel with his little snow shovel. Julia joined in with a broom. We didn't stay out too long due to the cold and after lunch they went out again.

Yesterday afternoon we went to the mall. Nathan has been begging us to go to the mall. I guess he just likes to look at everything there. We went and had dinner afterwards and it was fun to be out and about like a normal family (although most families were not venturing out in the bad weather).

Today we went to the toy store to pick up some toys with some money the kids received for Christmas presents. Nathan was thrilled to have money to spend. Julia was running around saying "my twenty dollars!". Nathan got (what else) a construction related toy and Julia picked out an electronic Dora the Explorer toy. Their Christmas presents are still en route to Colorado from New York. It will be like a second Christmas for them when they arrive since they only had one day to play with them.

Tomorrow Nathan starts radiation. I will try to let you know how it goes.

I will be putting some snow shovelling pictures on the photo album page.

Thursday, January 1, 2004

Thursday, January 1, 2004 8:14 AM CST

Happy New Year!!!!

I will update on yesterday. Nathan and I went to his appointment at 11:30 and they had rescheduled and one person thought another person had called us and vice versa and so Nathan and I did a little shopping and he asked for Taco Bell and we enjoyed hanging out downtown. I called Nathan's local oncologist and talked to him about radiation choices (which I will get into in a minute) and also about Nathan's overall health. We will bring him in next week to see him. He still is having diarrhea and he is so very skinny, weak and tired. These are things his New York docs are not concerned with but things we feel are affecting his quality of life and his local docs will work with us on.

As far as the radiation goes.. in New York they do their radiation twice a day for 14 sessions. We had talked to the New York docs about why and there are some theoretical advantages to doing it that way. I talked to the raditaion oncologist about it and he was fine with either way. I decided to go for twice a day for a few reasons. I will take any cancer killing advantage that may exist and also that means 7 days of treatments for Nathan instead of 12 and a nice break before going back to New York. The downsides to twice a day are that the side effects of radiation could be intensified. The side effects are nausea, vomitting and diarrhea. He will be on some medication to prevent nausea and we hope that will not be so bad. Of course this also means he has to go twice a day but I think he will be OK with it. They are a great group of people there and they have ice cream and popsicles!

The long term side effect of the radiation is that the right kidney will be heavily radiated and likely damaged. The left kidney will be completely out of the radiation field so it really should not be a problem. They are radiating only the abdomen/chest area.

I will be able to watch Nathan via a camera while he is on the table. We went and looked at the room and talked about being able to see and hear him in there and I think he will do just fine.

So - we will start on Monday and finish the following Tuesday.

Today Luke's parents and sister will be leaving to go back home. We haven't decided what we will be doing today. We still haven't unpacked completely so we will probably need to do a little work around the house. Oh - and watch some football too!