Click here to go back to the main page.

Friday, December 29, 2006 4:11 PM CST

Hello from snowy Colorado.

We ventured out yesterday late morning to the clinic and discovered that Nathan would need platelets sometime in the next few days and so we decided it was best that he get them yesterday because of the snow.

Fortunately, though there is a lot of snow, the drive home was fine and today we are snug inside our house catching up on 3 months worth of chores around the house.

We received the last of our boxes of stuff from New York and the kids promptly put on their halloween costumes and began playing with the toys we shipped back.

Nathan will go back to the clinic Tuesday morning and then hopefully back to school on Wednesday! Meanwhile we will be hanging around our house enjoying each other and ringing in the New Year.

Wednesday, December 27, 2006 8:55 AM CST

We are still enjoying our time together this holiday. Nathan went to the clinic yesterday and his counts were good enough to stop his antibiotics and neupogen. It was wonderful to take out Nathan's port needle. Nathan wanted to sleep back up in his bunk bed. We tested him to see if he was strong enough to climb up there and he was! He was very happy to finally be back in his own bed.

Nathan goes back to the clinic on Thursday. We are expecting another blizzard on Thursday with a foot of snow for the part of town we live in! We have not completely dug out from the last one. Our cul-de-sac is still filled with snow with only one lane cut though our neighborhood roads. It should be interesting.... We are just hoping to get in and out of the clinic before the snow starts. We will stock up on groceries today.

Monday, December 25, 2006 7:18 PM CST

Merry Christmas!

Nathan was so anxious for Christmas that he woke us up at 1:00 am and also 6:00 am wondering if it was time to get up yet.

The kids got so many wonderful presents and have been having so much fun playing with them all today. Thanks again to everyone who helped make their Christmas so wonderful.

Another big thank you to everyone who contributed to Nathan's giving tree for Lunch for Life. We are so touched by your generosity. Last, but not least, thank you to all who have contributed to Nathan's medical expense fund.

I hope those of you who celebrate Christmas had a wonderful holiday with your loved ones.

Sunday, December 24, 2006 10:06 PM CST

It's Christmas Eve and the kids are snuggled in bed with visions of sugar plums dancing in their heads. They are very excited for tomorrow.

I got up and took Nathan's blood to the hospital right away. By 10:00 we knew they he needed some platelets but that his other counts are great. Luke and his dad took him and they weren't there very long at all.

There is plenty of snow on the ground and we even had some snow showers late this afternoon - which we all enjoyed.

I'll have some pictures for you later tomorrow.

Merry Christmas!

Saturday, December 23, 2006 11:12 PM CST

Just a quick update to let you know how we are doing.

Nathan is doing pretty well. He wants to spend the day doing normal activities so by the evening he is so worn out! He has played in the snow the past two days but it is hard work tromping through the deep snow. He was so tired at dinner that he kept rubbing his eyes til they hurt but he still refused to go to bed early.

He has been having (for a while now) hip pain. Luke and I went out this morning and came back to find him whimpering in pain. From xrays we know there is scarring on his hip bone from disease. It makes us sick but we know this pain is probably caused by the cancer. Tylenol takes care of it so at least we can manage it. He is also quite pale and ashen. He just looks sick. I just hope he is on his way to feeling better.

Tomorrow morning I will drop off his blood at the hospital and they will check his counts. Hopefully he will not need any platelets or red blood, but if he does then he will get them at the hospital tomorrow.

Luke's parents and sister all arrived safely and on time despite the storm we had earlier in the week. We are so thakful for that as we know lots of people who have had to cancel Christmas plans due to the travel problems cxaused by the blizzard. The kids are having a great time with the grandparents and aunt.

Friday, December 22, 2006 12:15 AM CST

Good news! Nathan's ANC was 1000 today! He went from zero to 1000 since Tuesday. At 1000 he can be exposed to more things and we don't have to worry about his immunity so much.

His hemoglobin (red blood) has gone up since Tuesday and his platelets are at 38,000...he doesn't even need a transfusion today. He will have his counts checked on Sunday. We will drop his blood off at the hospital and then if he needs platelets he will get them.

Luke's sister, Anna arrived last night and his parents will arrive later today.

We will be enjoying our time together at home.

Thursday, December 21, 2006 3:59 PM CST

Sorry for not updating yesterday. The blizzard knocked out our internet service.

So - to start with Wednesday morning.

We woke up and brought Lauren in our bedroom. AFter a while it was time to put hook Nathan up to his antibiotics and so we prepared tow ake him up and instead found Nathan and Julia in the family room with their drinks watching TV, just like they always do at home. It was a wonderful sight.

Nathan played a lot, helped me make cookies, put osme ornaments on the tree, fed the dog, went up and down the stairs to do this and that and even PLAYED IN THE SNOW!

Luke and I knew that Nathan would be better at home be we had no idea he could make such a drastic change. In the hospital he had to be cajoled to get out of bed and at home he is all over the place. Home is really the best medicine for Nathan. Speaking of medicine he has not had a fever since the plane ride home.

Now - although the blizzard made for much fun for the kids it has not been the best timing (thought if ti had been one day earlyier it would have been teh swrost timing). Anyway, Nathan and I left the house to go to the clinic yesterday and promptly turned around and came home. The visibility was so low that I didn't feel it was safe to be on the roads. We decided to go in today instead.

Well - we woke up today to three foot drifts. Luke and some neighbors with a very lucky encounter with a city plow managed to get our van out of our street. AFterwards I called the doctor but he was not going to be able to go to the clinic and so it isn't even open today. We called around looking for a lab open on this side of town but did not find one. We had the option of taking NAthan into the hospital for blood counts but the ER. registration area is not the best place for Nathan to be either. So - we decided to wait it out until tomorrow. If Nathan starts to bleed we will take him to the hospital. His platelets are surely low right now but as long as he is doing OK it will be all right.

Luke remembered yesterday evening that Nathan was supposed to get neupogen in the clinic yesterday. Fortunately, we had some vials still and we also had some extra dextrose so we could mix it and give it to Nathan by IV instead of as a shot. Boy, wouldn't the team in NY be besides themselves to know that NAthan has not been seen by a physician since he left and we are giving him neupogen with a slow-push at home! Not to mention that I had to put a new needle in his port after our failed attempt to get to the clinic. Good thing we have our own in-home pharmacy.

So - we are hoping for an uneventful evening tonight and planning on a long day tomorrow getting transfusions. We are alos hoping to see a rise in Nathan's white blood cells to show that the stem cells have taken.

I will put some pictures in the photo page.

Tuesday, December 19, 2006 9:59 PM CST

We are all home!

It was touch and go at times today but we are all under the same roof tonight.

Nathan continued to have fevers all day.

I (Susan) left early this morning to fly to NY. The expected snow in Colorado Springs had just started. We got to NY very quickly due to the winds.

It took us a while in line to take off in NY and then it was a slow flight home. We had to stop in Lincoln, Nebraska to refuel. While we were there the conditions in Colorado Springs would not permit a landing.

We got back on and headed to the Springs. We were told that it would be an "instrument approach" and that if the pilot couldn't see the runway at 200 feet he would pull back up and try again. If he failed to see it the second time we would be going to Denver.

Fortunately, he did see the runway and we landed around 6:30. We picked up the girls and came home.

Nathan went immediately to his toys and began playing with Julia. HE tired and wtched some TV while I made him tacos. He has been wanting MY tacos for a long time. He ate a taco and we put him to bed. We are going to be giving him some IV antibiotics later.

So - this fever is still a problem and he is so very skinny and weak and he still has no blood counts. so we are home but are far from out of the woods. He has an appointment tomrorow at 11:00.

Now that we are home we need all your prayers for his counts to come up and his fever to go away.

Nathan is just so happy to be home. As tired and sick as he is he looked very happy and had a smile on his face when he snuggled under his covers tonight. He is on a mattress on his floor since he can't climb up to his bunk - but he often sleeps there to get medicines in the night so he doesn't mind at all.

I'll update again tomorrow.

Monday, December 18, 2006 10:45 PM CST

The fever is still hanging around. He officially recorded one today, but was on tylenol as a pre-med for various other things going on. I think he probably bounced in and out of a slight fever most of the day. That being said, we are on target to get out of here tomorrow. I should have updated earlier. My apologies. They have been really good to us today. They got right in to ease my fears. And the first thing the attending did was to tell me he knew I was worried but that we should still be getting home. He said he "wasn't too worried with a slight fever in a kid that is still happy and active". Nathan was sitting up and coloring when the doctors came in. That was good timing. He had been feeling a bit more down than usual in general.

He did feel lethargic when his temperature rose. And we did bicker and snap at each other a fair amount. He took a nice long nap, and while he woke up with his one official fever of the day, he perked up after that nap. We took part in one last Monday bingo night and he was even up for staying around for UNO. He then ate dinner and played for awhile before bed.

I really want these fevers to go away, but the important thing right now is getting home. We have complete confidence in our doctors at home and they can deal with these fevers and low counts just as well as they can here.

He has been experiencing some pain in his hips today. We are ever so hopeful that the fevers and pain are from his body settling in to start producing blood cells in the marrow space.

Thanks everyone for your support. This has been a particularly long haul and we are looking forward to closing the door on it and getting Nathan stronger and recovered from all of this.

Sunday, December 17, 2006 8:56 PM CST

*** Fever update Monday 9:00 am ***
Nathan's fever came back last night after the first dose of tylenol wore off. He got more tylenol and that brought the fever down.

Our hope was that the fever was related to his body producing new white blood cells (engraftment fever). My big disappointment this morning was no increase in WBCs. I'm not sure if this could still be engraftment or not with no measurable cell growth. So far, and its early, nothing nasty has grown in his blood cultures.

We have one of many great nurses today. The first thing she started doing was telling me she thinks the doctors we are dealing with here will continue to work with us to make travel tomorrow happen as planned. I feel a little better, but I'm still really worried about the next 36 hours. We need this fever to go away, or at least stay under control. And I need the doctors to take the initiative to work towards the goal as planned and not put up too much resistance because of this. Ultimately, as someone recently told me, if it is a fight it will be one-sided since he is your son and you will make the decision, but I'm seriously worn more thin than I've ever been. I just don't need the stress of any resistance here. I'm already stressed enough worried about being stressed about it.

The nurse practitioner on the floor today just popped in to tell me that the first thing she is going to do when the attending gets in is to go over the plan for Nathan and how they know how important it is to us to get him home. So the nurse and nurse practitioner are really trying to take care of us. I find that encouraging.

"Daddy, it's time to go home."
***

Fever. He flirted with one late last night. Tonight he got over the magic 38 C with 38.3. We gave him some tylenol to get the fever down and the doctors aren't going to do anything major like switch up his meds. They will give him "24 hours" before they want to switch up/add to his medicines.

I'm really stressed. On one hand I know that I will take him home on Tuesday unless there is a seriously compelling argument that the flight itself is very dangerous. There is nothing they can do here for Nathan at this point that they can't do in the Springs. I will do what I see is best, I just don't want to fight too much with the doctors here or make any too difficult decisions.

I'm so frustrated. He has been so stable for so long and now that we are so close to our planned discharge he has a fever and it is going to complicate things. I'm praying for some counts tomorrow. If his counts climb, we can attribute the fever to engraftment and cell growth. I think the doctors are trying to work towards are goal. I'm very curious to hear the first words out of the attending doctor's mouth tomorrow when he is by on rounds. That will set the tone for the next couple of days.

In all of my frustration over tonight, I can't forget to thank our wonderful friend Marianne for coming into the city last night. Marianne sat with Nathan while I took care of checking out of the Ronald and had myself a nice relaxing dinner. She brought lots of toys and snacks and Nathan had a great time. Thanks, Marianne.

No more fever. No more fever. No more fever.

Friday, December 15, 2006 6:16 PM CST

Nathan continues to do very well. His counts haven't started up yet, but he is getting stronger every day. Starting physical therapy and occupational therapy have been great for him. The women who do it work him pretty hard, but he has fun doing it. It is really interesting. It clearly makes him very tired, but since he has started he has been so much more likely to just want to be up and about or in the playroom. It has been great for him. He also continues to eat pretty well. He started to eat a bit more when I started running out to local restaurants that he knows to pick up food. Since then he has been going through plate after plate of spaghetti. And now he is asking for something from the hospital menu from time to time too. His weight had fallen a lot. He is still a lot lighter and skinnier than when he came in, but he started to gain some back. Today he bumped over the 18 kg barrier going from 17.8 to 18.1. I know he could dip back down with just normal slight fluctuation, but I hope not. It is a big mental thing for me to have him over 18 kg. He has eaten pretty well today too, so things seem to be trending in the right direction with his eating and his strength, although he has a long way to go with both.

Our big thing now are preparations for traveling home on Tuesday, December 19. The doctors are all cooperating and working towards our plan. Supposedly today they called Nathan's oncologist in Colorado Springs to work on the transition plan. I'm not only excited to get home, but I'm so happy to have care switching over to our doctors there. They may have more therapies to try here, but on the whole they don't care for the patient and family's quality of life nearly as well as our doctors back in the Springs.

It was a good week for visitors too. Susan's cousin and my great friend, Matt, was here Monday through Thursday. Matt being here certainly had a lot to do with Nathan perking up too. I think they had a lot of fun together. I got some much needed breaks, two nights sleep out of the hospital, and a lot of adult non-neuroblastoma conversation. Thanks, Matt.

Our friend Maeve who lives in Brooklyn also made it by for a visit one evening. She came with homemade cookies and gifts! One of the gifts she brought is a remote control truck. It has been great fun and great therapy for Nathan. We have circled the whole floor with it a couple of times now. It has proved a good tool to get Nathan out of the room and walking. Thanks, Maeve.

Nathan is sad to still be here and preparing himself as much as he can emotionally for going home. Last night he was really sad about still being here. He didn't really want to talk about it, but summed it all up with, "It's time to go home, Daddy". We sure miss Susan, Julia, and Lauren and we know they really miss us too. Nathan's counts aren't going to be coming up before we travel on Tuesday. We won't have any trouble or fights with the doctors about discharge as long as he remains "stable". For Nathan right now the most important thing in regards to stability is no new fevers or other signs of possible infection. So, if you are inclined to target a few positive thoughts or prayers our way, please focus first on Nathan remaining fever and infection free so we can get our family back together at home.

Wednesday, December 13, 2006 4:16 PM CST

Things are going well here. Nathan's spirits have taken a turn for the better. I think several things have contributed to this. First and foremost, I think he knows that having received his stem cells that his counts should get better soon. More importantly, he knows that there is an end in sight to this hospital stay. The other thing that is perking him up, I think, is that his days have become much busier. Now that we have added visits from the physical therapist and the occupation therapist to his days, he is up and out of bed and busy quite often. He is also more likely to be up more when not getting therapy. He has been walking and playing in the playroom over the last couple of days. He is still weak and he is still getting very tired with all of the work that he is getting put through, but his spirits are better and he is more apt to want to be out of bed doing things.

We've also had a great time with our friend Matt who is here to help me out and perk Nathan up. It has been great for both of us to have Matt here visiting.

On the medical front, there isn't much going on. Well, there are lots of antibiotics, other medicines, and transfusions, but nothing out of that routine. We are hopeful that the physical and occupational therapy will address the pain he has had in his leg. And we need his fever and other issues to remain stable so that there is no question about the safety of traveling with him on Tuesday the 19th.

Monday, December 11, 2006 10:18 PM CST

What a day! The morning started with everyone telling me how excited they were that today would be the day Nathan gets his stem cells. This was before the blood draw that would confirm that he would be able to get them and we have had so many delays that I wasn't willing/wanting to get too excited. They drew the blood at around 9:00. Nathan and I lazed around a bit and had breakfast. Then the physical therapist came by to meet Nathan and put him through the paces of seeing how strong he was, walking with him, getting him to jump, and etc. She was great and will be coming back daily to work with him. She said the pain and stiffness in his legs is consistent with weakness from the prolonged period of relative inactivity. I'm looking forward to him continuing to work with her and the occupational therapist (she came by today too). They seem great and I think they will get him up and around easier than I have been able to.

As we were on our walk with the PT I got the word that he was on for his infusion at 1:00. What a relief. Everything was pretty much on time too. The infusion itself was a 20cc push from a syringe. It started at about 1:20 and ended at 1:35. Nathan did great. He was a bit nervous about it all but handled it all very well with no side effects or reactions to the preservatives that the cells are stored with.

Not long after the infusion our friend Matt arrived and we had a new diversion. It is great for both of us to have him here. He napped for awhile and we hung out, had dinner, and hit the playroom for bingo night where he got another great prize. He was happy and chatty well into the night and even asked me to put something down on the floor so he could get down and play with his new toy.

It was a long, but good day.

The countdown to home now begins.

Sunday, December 10, 2006 8:49 PM CST

Update - Monday December 11

Stems cells are on for around 1:00!

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

Nathan and I had a pretty good weekend. My Mom had to leave first thing Saturday morning, so we said our goodbyes Friday night. It was wonderful having her here. I couldn't believe her stay went so fast. It had been a long time since I had a chance to just sit down with her and talk, and that was really good for me. Nathan perked up when she was here and really enjoyed her stay.

On Saturday Nathan and I got out and about in the hospital some. I'm becoming increasingly paranoid of exposing him to others. The hospital is pretty quiet on the weekends so we went downstairs to the cafeteria for a snack and we did some shopping in the gift shop. Exercise is increasingly important for him. He is starting to have physical issues related to just being in the hospital so long. Just walking around off the floor is good for him and a way to get him to walk without having to push him too hard.

In general over the last two days his spirits have been good. We've kept busy building and rebuilding lego toys, watching some movies, and playing computer games.

Eating has become another big issue. He has lost so much weight. One thing we have noticed is how little attention the doctors here pay to that. He had lost weight but was maintaining a somewhat stable "hospital weight". Then when he got that fever on Thursday and started feeling bad he just stopped eating much and his weight dropped. Yesterday I ran out and got him spaghetti from a place he likes. He ate it for three straight meals (lunch and dinner yesterday and breakfast this morning). He drank a little better too and gained 0.3 kg when they weighed him this morning. He ate a decent hospital lunch and then I ran out to get him more food that he knows he likes from a local restaurant (this time chicken pot pie). He ate that pretty well and had a piece of apple pie too. So his appetite has been better and moving away from the hospital food has helped. I'll run out every meal if I have to if it means he will eat well and put some weight back on.

Our friend Matt comes into town tomorrow afternoon. Nathan and I are looking forward to his visit. When I told Nathan that Matt was going to come after his Grandma had been here he smiled and said, "Oh. I like him."

Tomorrow is a huge day. They will draw his blood at 9am to test the radiation levels. We should know by 10:30 or 11:00 if they are low enough to receive his stem cells. If the levels are good, he will get his stem cells mid-afternoon. We have a lot riding emotionally on being able to get his cells tomorrow. If the radiation clearance has slowed more over the weekend and we can't get them, I think I might be devastated.

Nathan also starts physical therapy tomorrow. The docs recommended that on Friday so he hasn't met with them yet. He really wants to be good and exercise and understands why he has to, but he doesn't like just walking laps around the floor. I hear the PT team is really good and I hope that the exercise is fun for him. I'm also happy that they will understand the issues a kid that has been in the hospital for over a month has and will know exactly what to do to try and help re-strengthen his bones and get him moving around well again. Angela, the wonderful NP on the floor who takes great care of us, also recognizes that getting PT involved is good for me. She said that she knows I like to work with him myself, but that I probably need a break from pushing him to do things. We are so lucky that Nathan is such a good boy. Most of the time he takes his medicine and does all of the things he needs to so well. There are a couple of things he likes to draw the line on. He doesn't want shots and he doesn't want to be forced to exercise in ways he wouldn't do when he is at home.

I'm doing okay. Nathan and I got along great all weekend. I think having Mom here recharged the batteries a bit. Also, no matter how much I miss Lauren and Julia, the routine we were in with trading care between Nathan at the hospital and Lauren and Julia out of it was really hard. I am tired though. A friend whose son is also here on the floor told me I looked tired again tonight. I glanced at myself in the mirror later and had to admit I kinda look like hell with dark, puffy, bloodshot eyes.

Stem cells...Stem cells...Stem cells...Stem cells...

Friday, December 8, 2006 5:22 PM CST

Hi - it's Susan updating for Luke.

Nathan did not get stem cells today. He is still too hot! In the older version of hot antibodies (without avastin) done in the 90's whre the radiation was 5 times the amount kids cleared it in 8 days. Who knows why Nathan isn't clearing it faster. The doctor redid his calcuations based on the new curve which is very flat at the tail end and is 99 percent sure Nathan will get his stem cells on Monday. This has been so hard having these delays. The good news is that chances are these delays will not delay our return home.

We have been working on a return date of December 19th all week, at first thinking it was later than we liked but now will be sooner than he may be ready. The wonderful people who run "Flight of Hope" here in Colorado Springs (who I know from church choir) will be able to secure the private jet to go get Nathan. So - as long as Nathan does not have a fever and is stable he will come home on the 19th whether his counts are up or not. The team in NY knows this is what we want and will do their best to make it happen. Nathan's wonderful doctor here in Colorado Springs will do anythign to help the transition as well. They know his "quality of life" is so important right now. It's a good thing but also sad that we are in that place where everyone knows that Nathan's future is very uncertain.

On to Nathan..yesterday was a bad day. He felt crummy and wouldn't eat. By the end of the day he spiked a fever and they changed all his meds around. I was so upset I was about to get on a plane. Fortunately his fever went away right away and has stayed away all day today. His other problem currently is that his legs hurt. This is most likely due to his inactivity - laying in a hospital bed for a month. They did an xray of his legs today and can see bone softening that can happen with not enough use. So - there is a renewd effort to get Nathan up and moving and physical therapy will start working with him on Monday. It is highly unlikely that the leg pains are due to disease since the chances of his progressing right now are very slim.

It is appalling to me what this month in the hospital has done to Nathan. In addition to the leg thing his weight is down to 38 pounds (from 44) and his spirits are hurt as well. We just need to get him out of there and home and fatten him up and let him run around and play with his sisters until he feels better.

I will put some new pictures of Nathan i the photo album page. He has enjoyed his week with his Grandma there. Next in for a few days is my cousin, Matt, who also happens to be one of Luke's best friends.

A quick update on the women of the family. May parents left on Wednesday after helping us out for a week. We got the inside of the house decorated and some organzing and laundry done. I also got out by myself a little. Lauren got sick on Monday and passed it on to me. We are finally recovered.

I want to thank everyone who has added ornaments to Nathan's tree (see above) and purchased gifts and sent funds. We can't begin to tell you how much this means to us and how good it feels to have you all there supporting us. On a similar note - please do not send anymore mail to the Ronald since Luke may check out a little early after Matt leaves since he will only be at the hospital anyway.

PLease send prayers NAthan's way that he will not get any infections or fevers and that he will get his stem cells back on Monday and be able to come home as planned.

Thursday, December 7, 2006 7:07 PM CST

No stem cells today. They will test the radiation again first thing in the morning on Friday. I was pretty frustrated not to get to talk to the doctor. He left a message with the nurse. Apparently he stopped by but didn't find us. That is a bit confusing since we were in the room all day waiting for him. My big concern is that he won't clear before the weekend and that the necessary labs won't be open to test his blood and provide the cells.

He is feeling pretty bad, both physically and emotionally. He was completely beat all day and flirting with a temperature this evening. His counts were actually slightly better this morning, and yet he is obviously feeling worse.

We need to get those cells in him and get him feeling better. I'm worried that he is going to come down with something after all this time waiting for his cells.

Wednesday, December 6, 2006 9:00 PM CST

Nathan had a fine night last night. Mom spent most of the day with Nathan while I packed up stuff that can be sent back home from the Ronald. I think Nathan had an okay day. He seemed a bit tired and run down. No surprises there, I suppose, but still hard to see.

We may, or may not, get stem cells tomorrow. Today's tests showed that the radioactivity levels in his blood will be borderline tomorrow to receive the cells. They will draw his blood at about 10am and if the radiation has cleared enough he will get cells in the afternoon. If not...they will test his again in the afternoon and we *should* be able to get cells on Friday.

Tuesday, December 5, 2006 9:11 PM CST

Typical day. There was some good. There was some bad. I'm getting so tired of making him do things that upset him, and there are always a few things each day that upset him.

He got moved to a double room today. There was lots of stress around that. We were lucky to have a private room for as long as we did. I am a bit upset that they moved us and then apparently didn't need the isolation room for an admit because our old, comfortable, quiet private room is sitting open and empty tonight. No big deal though and inevitable. We have very nice and friendly roommates that claim to like a quiet, dark room to sleep in. So far they are living up to that.

And the news you are all waiting for...No stem cells tomorrow either. The radiation is clearing more slowly than expected. Thursday doesn't look like a lock at this point either. They will draw blood and test it tomorrow afternoon again. We should be very close to the levels needed, but perhaps not quite there yet.

The doctors keep talking about when he might get his cells. Nathan always surprises them by saying, "I don't want stem cells". He hates the smell. The cells are frozen with a preservative that smells during the infusion. Nathan will smell like it for days as he sweats and pees out the preservative. It does smell pretty bad. I'll take it though. He needs them to get better and go home.

In general, over the last couple of days I have heard a lot of bad news regarding other little neuroblastoma patients. It makes me so sick and so angry. Many of you only have Nathan as a window into this world. Unfortunately, as "rare" as pediatric cancers are, there are a lot of other incredible kids and families out there fighting this. Please send them your prayers and kind thoughts too. God knows we all need them.

Monday, December 4, 2006 6:39 PM CST

Nathan had a great day. He is really enjoying his Grandma's company. I think having her here has really perked him up. My Mom brought Christmas decorations and they have been decorating the room. This morning she bought a small tree and they decorated and put up the tree. He really enjoyed it. He also won two prizes at Bingo tonight and he is quite pleased about that.

We had hoped he could get stem cells tomorrow, but his doctor tells us that his blood is still too radioactive. He will test it again tomorrow afternoon to let us know if he can get them on Wednesday. We are hoping for Wednesday now. The sooner the better.

Monday, December 4, 2006 7:39 AM CST

The weekend was pretty good on Nathan. Not a lot went on and the hospital was quiet. We kept really busy on Saturday doing various projects and crafts. He was definitely feeling llike keeping his mind occupied and it was exhausting for both of us. We didn't get along very well most of the day. We were needing a break from each other. My Mom, after a lot of weather related travel cancellations and delays, arrived in New York very late Saturday night. She came straight over to the hospital yesterday morning and I could really tell a difference in Nathan all day. He really perked up to have his Grandma here. She brought Christmas decorations for his room. For the longest time in the morning he didn't watch TV or really play with anything. He just talked to his Grandma. I got out of the hospital at lunchtime, grabbed lunch, did some shopping I needed to do, and went back to the Ronald. The Bears game was on and I sat and watched nearly the entire game. It was strange to be doing something alone. And it was strange to be doing something not related to a goal, project, or the children. Strange but good.

There were no real medical issues this weekend. Nathan's counts dropped (Well, his hemoglobin and platelets. His immunity doesn't have anywhere to fall.) a lot between Saturday and Sunday. In the evening his nose and loose teeth started oozing blood. I pushed a bit and got platelets before the CBC they drew came back. He was bleeding. He needed them no matter the number and they had been pretty low in the morning anyway. I'm not sure what the number was. I left for the night before they came back.

Which brings me to the night. I slept in a real bed last night. First time in 20+ days. It was strange to leave him. I didn't like it really. I liked going back and sleeping in a bed, but I didn't like leaving Nathan. It is good for me though. I know it is.

This is a big week for us. Hopefully we will have an idea today of when he may have his stem cell infusion. We really want it to happen as soon as possible so that we can get him past any infection risk and just get him home. We didn't think that this treatment would be so hard on him and we just want to get him on the road to recovery from it.

Thanks to the quick response to Nathan's Giving Tree at Lunch for Life (link above). We are always touched by those who care and are willing to give in honor and support of Nathan.

Friday, December 1, 2006 5:31 PM CST

I'm feeling pretty tired tonight, so I'm not really sure where to start. Yesterday was a pretty slow day. Nathan didn't need any blood products. We hung out and all was pretty good. Special thanks to Susan's aunt and uncle, Joan and Bill. They treated us to a great night last night. Joan sat with Nathan while Bill and I had a great dinner. It was really good for me to be out of the hospital and Nathan always really enjoys his time with Joan.

Today has been pretty good too. Nathan needed platelets and red blood cells. After his treatment on Tuesday we did some breathing treatments to help open his airway from the allergic reaction. That night he didn't have the persistent cough he has had. We did a treatment Wednesday night and again he slept great. I didn't make him do it last night and he woke up in the middle of the night with a terrible cough and then in the morning his cough continued to be bad. We made him do a treatment and it cleared right up. So, it would seem that this allergy he has is causing his throat to close a bit. He doesn't like having another thing he has to do, but we'll make him do the treatments at night for awhile so he sleeps well.

Nathan also had an MIBG scan today. This is not to assess disease status, but for the study purposes to see if the antibody carried the radiation to the places in his body that we know have cancer. The doctor says that the uptake looks more consistent with the first cycle than with the second. That means that more radiation *may* have been delivered to the cancer this time. That would, of course, be good.

We have no more information about when he can receive his stem cells. The doctor thinks Tuesday or Wednesday are more likely than Monday, but we will check on Monday and see if the radiation has cleared enough.

Unfortunately my mother was not able to make it to New York today. The weather in the Midwest was too bad today and her flights were canceled. She is rescheduled to come tomorrow and it seems like the weather is supposed to cooperate. Nathan and I were disappointed and looking forward to having her here with us tomorrow.

Susan says that her and the girls are settling in a bit at home and that it is great to be there.

Thursday, November 30, 2006 7:16 AM CST

Nathan had a fine day yesterday. There were no real medical issues other than the continued antibiotics. His hives, which had continued to be very impressive through the night were gone by the morning. He slept well with less of a cough than he had been previously having. I think that maybe the breathing treatment he had for the allergic reaction helped his cough. He had to hit a radiation number of 7 (not sure the units) to be let off of isolation. He was 20 something after the infusion at 4pm on Tuesday, 11.9 Wednesday at 9am, and then 9.5 at 3:30pm. The radiation is clearing a lot slower than round 2 and a little slower than round 1. The doctor seemed a little surprised that it is clearing slower. We are hoping that it is a good sign that this cycle will be as effective as the first one. I don't know if there is any science behind that hope, but we need to have the hope.

Tomorrow they will scan to see where the antibody carried the radiation. The doctor also said he will check the radiation levels in Nathan's blood to see if we can plan on the stem cell rescue for Monday. If you are looking for something to focus positive thoughts and prayers on, please focus on getting stem cells back and counts up and us home as soon as possible.

Today should be a pretty slow day. He will need platelets and maybe red blood cells too. I'm hoping for only platelets, but it won't be a big deal if he needs both. Susan's aunt will be coming to sit with him in the evening while I get a break and go out to dinner with Susan's uncle. I'm really looking forward to it and I'm sure Nathan will too once he knows the plan.

Tuesday, November 28, 2006 4:05 PM CST

Hot 3F8 antibody treatments are now done. Today was difficult. We got started a little late for some reason. The word was that the antibody hadn't arrived from the lab until later than planned. He definitely had another pretty strong allergic reaction, but his airway was a lot better and he kept breathing pretty well throughout. They changed up his meds a bit based on the last time around. I don't know if that helped or if it was just different, but he kept breathing well and had good oxygen levels. He has had a terrible, terrible persistent cough related to the allergic reaction and some swelling in his throat. They are going to keep giving him breathing treatments every four hours when he is awake until he seems to be over it. He turned bright red during the infusion. As the redness began to recede we could tell that his entire body was so covered in hives that he just looked red. He still has a lot of hives and has been itchy.

The pain was pretty bad. I wasn't at round 1, but that one was bad. The second treatment didn't seem so bad as far as pain goes, but he may have been too distracted by not being able to breathe to complain about the pain. This time the pain was pretty bad, but the worst part was that it lasted a long time. Perhaps we can hope since the pain was more comparable to the first treatment that maybe this one will be as effective as that first treatment. I'm sure I'm grasping at straws there, but I can hope the pain was for something. He is finally resting now. As he sleeps the throat isn't bothering him as much, it would seem. I'm glad to see him resting. He will probably wake up just in time for bed, but I can deal with that.

I said goodbye to Julia and Lauren and Susan said goodbye to Nathan. She headed back to the Ronald to finish packing and be ready to head back to CO tomorrow morning. I'm sure it is hard for her to say goodbye and go. I know it was hard for me to say goodbye.

The doctors says we will check the radiation levels in his blood on Monday and that he will hopefully receive his stem cell rescue on Monday or Tuesday next week. After that we would expect to see his counts start to come up in about a week hopefully and then we can all get home in time to settle into being at home before Christmas.

I miss my girls already.

Thanks for your continued well wishes and prayers. Thank you so much for your packages, cards, and gifts.

Tuesday, November 28, 2006 10:34 AM CST

Sorry for the lack of updates yesterday. There was nothing really new going on. Nathan's white count is up at .3 but he still has no ANC. He does have some other white cell elements and so there is definately some movement.

Yesterday we brought Lauren and Julia in to say goodbye to Nathan. Today he will get his antibody and then the girls and I will leave tomorrow. Luke will take over the updating while he is in NY with Nathan.

Nathan wants the computer to play some games so I will have to cut this short. We'll update later on how the antibody went.

Sunday, November 26, 2006 12:55 AM CST

Today is day 19 or 20 in the hospital - at least 16 more to go. He will be in the hospital longer than when he had his stem cell transplant. They did move Nathan out of the bad room yesterday into the more standard type. He has had no roommate so far so that is nice.

He is doing the same. He got some blood and accompanying high blood pressure today. Yesterday he got platelets and it was not a very good bag because he only went up to 30 and so will get some more tomorrow. His white count is still .2 but the nurse tells me he has some immature white cells so he probably has a small ANC but they haven't calculated it yet. It doesn't change anything but it is a sign he might have eventually recovered his counts on his own. He will still get his stem cells.

We have visitors this weekend. Julia's wonderful babysitter, Tammy and one of her daughters and husband came to visit. Julia and her daughter are fast friends and Tammy is like a second mom to Julia. I spent yesterday with them pushing our way through the crowds (but enjoying it!) and Luke is with them today. Julia got to spend the night at their hotel last night. We brought Nathan out on a pass and all had dinner together.

I am listening to Christmas music on my iPod and they are decorating the hospital. It is just making me melancholy. Kids shouldn't be in the hospital at Christmas time. Nathan should be home - I should be able to sing this beautiful music with my church choir instead of sitting in the hospital.

That's all for now.

Friday, November 24, 2006 4:30 PM CST

All is quiet here. Nathan's hemoglobin only dropped a little bit today so no blood transfusion or platelets either.

Nathan had to change rooms and he got the worst one on the floor. It is tiny and the TV is off to the side. The nurse put his bed at an angle so he wouldn't get a crick in his neck. He will change again on Monday before the hot antibody on Tuesday.

I got some pictures from the child life people from yesterday and they are better than mine so I put some different ones on the photo page.

That's it from here.

Thursday, November 23, 2006 8:14 PM CST

Happy Thanksgiving!

We had a really good day. Because it was Thanksgiving the rules were relaxed at the hospital and so the girls and I headed over there after breakfast and hung out in Nathan's room for a little while. His roommate had checked out the day before and he doesn't have a new one yet.

At 11:30 we walked over to the day hospital's playroom where they had a very nice catered meal for the families. The food was delicious and traditional. We had the good company of some families we have gotten to know who are also stuck inpatient. We went back around 1:30 and Nathan seemed tired so Luke left with the girls and then Nathan was itching for more activity. We played with play-doh for awhile. Around 4:30 they unhooked him and we came back to the Ronald. We ended up making some spaghetti and sitting in the blessedly uncrowded dining room chatting and drinking wine with friends. Nathan and Julia got some playtime in and Nathan was also playing with Lauren and being very sweet with her. They do adore each other. He and Luke went back around 7:00 and Luke says he is still in a great mood and eating some more.

As far as the medical stuff...no real change in his counts. His hemoglobin stayed stable from yesterday to today. He didn't have any high blood pressures today but they gave him a diuretic anyway since his weight was up a little.

I will post a few pictures from today if I get the chance.

Wednesday, November 22, 2006 2:46 PM CST

I think we are now resigned to the extra weeks and are looking ahead to a definate departure from NY. It is nice to have a plan with an end date after so many months of questions. In January we will need a new plan again but we will get a little break.

Although I have repeatedly said we would all come home from NY together I have changed my mind. With Nathan in the hospital our family is rarely together. It made sense for us all to be here until now. We had decisions to make and we could be together as a family. Now, I think it is best for the girls to be at home and for me to finally be home as well and get the house ready for Christmas. Luke is not working until at least mid-December anyway and so he might as well be with NAthan. If things start to go south for NAthan I may regret it, but we can always come back.

So - the girls and I will return home next Wednesday. My parents are meeting me in Denver and will help me out for a week getting back into the swing of things in Colorado. I bought Lauren a plane ticket because I could not deal with a 4 year old next to me and a squirmy 1 year old on my lap for 4 hours. Lets hope Lauren doesn't scream in her carseat the whole time.

Back to NAthan....he is doing OK today. He didn't sleep much last night due to beepiong pumps and lots of bathroom trips. They are having a very difficult time striking a balance with his fluids, blood pressure and urinary issues.
Whenever they up his fluids he get high blood pressure. His urine tested positive for protein and so they want to keep him hydrated. They have been pumping his fluids up and down during the day. Just now they bumped it down again and give him a diuretic to pee off some of the fluid. They check his weight and can tell when he is retaining.

I'll update again tomorrow.

Tuesday, November 21, 2006 8:46 PM CST

Luke here this time. The doctor dropped by this afternoon as expected. Nathan's HAMA test was negative, which means that he is eligible for one more round of treatment on the hot (radioactive) antibody study. As you probably know from Susan's previous posts, Nathan had a good response from the first round of treatment and remained stable after the second. Our choices are either to go ahead and give him his stem cells on Friday and be done and ready to go home about a week after that, or to go ahead and get another round of treatment on Tuesday and give him his cells roughly a week after that and then be able to go home after another 5 to 7 days. He will be in-patient until after his counts come back after stem cells.

The doctor seems to think we should go ahead and do the treatment. Before we came here, Nathan's disease progressed through very aggressive chemotherapy. He got better after one round and remained stable after the second. With the negative HAMA there is a chance that another round could cause some improvement or continue to keep him stable. We had been afraid that doing another round would mean another month here in the hospital. The quick math we did in our discussion with the doctor has another round pushing us 10 to 14 days later than if we just did the stem cells on Friday and went home when he got better.

We have gone this far and as of now we are leaning towards giving the go ahead for another treatment on Tuesday. It seems the responsible and right thing to do. If the treatment could help him and it keeps us here for not too much longer (and we should still get home before Christmas), then we think we should probably go ahead and do it. We are getting tired, but we still have some fight left.

That is the current thinking. Thank you so much for your continued love and support.

Monday, November 20, 2006 11:49 AM CST

We have more information but no decision yet. Officially Nathan's scans are the same as after round 1. The doctor wants to wait to see if Nathan has a HAMA (We will know around 5:00 pm tomorrow). If he has a HAMA then he will get his stem cells back on Friday. He would then be in the hospital for about another week afterwards (maybe less). His doctor seems to indicate he still has some treatment options - but we shall see.

If the HAMA is negative then NAthan could receive one more hot antibody infusion next Tuesday. He would be off the study and would not get any more Avastin. He would then receive his stem cells back about a week later when his blood is "cool" enough. This is a much shorter period of time than Luke and I were thinking and could still get us home by Christmas.

So - if the HAMA is negative Luke and I will have to decide if it is worth giving Nathan another infusion. I asked the doctor if he could benefit from another infusion even though the second round didn't do anything (I guess it could have kept things from progressing). The doctor thinks we really should since NAthan will get his stem cells back anyway. He said all we have to lose is time but I told him we don't take that time lightly.

So - we'll see what the HAMA is and go from there.

Sunday, November 19, 2006 3:07 PM CST

Nothing new again today with counts. He got some blood and is having his usual blood pressure issues.

We had to move to a shared room today. The single room was nice while it lasted.

Nathan had a good visit to the Ronald last night. He really did not want to go but I convinced him after a while. There were some crafts, which he sat and did and food from Chipotle! There aren't very many Chipotles in NYC so I hadn't had any in a long time.

Nathan seems a lot more chipper today than yesterday. I hope he can continue to feel better.

We'll have a lot more to update about tomorrow. Luke and I think we know what decision we will make but we need to see the official reports first.

Saturday, November 18, 2006 3:08 PM CST

Nothing new to report today really. Still no ANC. He got some platelets.

In a little bit we are getting a pass out to the Ronald. We already got some unexpected family time today because as the girls and I were coming for me to switch with Luke, Nathan's nurse had unhooked him to change some tubing and when he complained about the menu she told him he could go down to the cafeteria. So - we all sat in the cafeteria together.

Nathan is feeling about the same. Right now he is sleeping.

Today is day 11 in the hospital....

I asked the attending doctor (not the same as Nathan's neuroblastoma docs) if he could have his shot medicine by IV instead. Apparently it is 10ore effective by shot than IV. I told her that at this point in Nathan's treatment my first priority is to stop doing thing to him that are unpleasant. She deferred my until Monday when she could get the blessing of the NB docs. I managed to shock her and the fellow by telling them that our home hospital will give me the medicine in a syringe and let me slow-push it at home. They looked truly appalled at the idea. It gave me a little satisfaction because it does no harm for the medicals to think outside the box once in a while. Nathan's doctor practically called me a liar the other day when I told him that Nathan had been released from the hospital from fever and neutropenia with a 0 anc to receive home health care. He said no physician would do that. Well - I know a great one - who advocates for Nathan and trusts his mother - who did.

**update** the nurse came in a little later and told me he had been written for IV neupogen instead of the shot - so there is a little victory. Nathan was so relieved when I told him - it was very sad how grateful he was. I made me feel so bad to realize how much mental energy it takes for him to endure everything he has to.***

Friday, November 17, 2006 2:54 PM CST

As usual - no counts again today.

Nathan had his MIBG scan and bone marrows today. His doctor looked at the scan and said it looked unchanged to him. We will wait for the official report but it is very unlikely he will have another round of the hot antibodies. His doctor told us to think about if we want him to be pulled off the study and receive the stem cells on Monday or if we want to wait and see what the HAMA test is first. Luke and I have not gotten to discuss this yet but I think it is very unlikely we would put him through another round if it is not really working for him. The final MIBG report on Monday will help us to decide.

So - that is not very good news but we will move on from here.

I will put some birthday pics up on the photo page. You will see how skinny and ill Nathan looks. He was so robust before this last month.

Check out Julia's picture in the news
here she is in the black dress with reddish hair.

Thursday, November 16, 2006 12:55 AM CST

NAthan's white count is again .2 today. He got some platelets earlier and also had a cat scan. He threw a fit about drinking the cat scan constrast this time. I wasn't there but it sounded like a pretty bad time. I arrive just in time to go into the scanner with Nathan. Julia and I had been off getting ehr a dress to wear for Lauren's party. Nathan has his MIBG injection this afternoon and then we can leave until 7:00 pm. Right now he is fast asleep. Luke says he had a bad night last night. I hope he perks up for Lauren's party.

Nathan may not have any bone marrows as was planned. Since his counts are low they probably cannot get a good sample. I don't know how this affects the study and so we will see what happens with that.

Before I left the house this morning the manager asked if we would be there are noon. I said that Luke would be there with the girls and she said that the Duchess of York was coming.

Sounded interesting and low-key. What I didn't know is that the Dancing with the Stars stars were going to be there too and there was tons of media. Luke said he is wiped out from the event. I guess Julia met everyone and spent some time perched on the lap of Emmitt Smith's dancing partner. He was there too along with Mario Lopez. Our camera wasn't working to well but I will share any good pictures we got out of it.

Thanks to everyone for you Christmas present offers of help. I had already looked for some of the gifts on Amazon and they weren't there. I will try to put some kind of list together and then, next week, I can figure out what our plan is. I certainly wasn't expected my off-hand comment to have such a response. I guess I can tell how much everyone is looking for some way to help us and that really makes me feel good. I wish you all were here in NY with us!!!!

I will post some birthday pictures tomorrow as well.

Wednesday, November 15, 2006 1:12 PM CST

White count is still at .2. Nathan needed blood and platelets today but they did not want him to have both in one day and so he only got red blood. He will get the platelets tomorrow.

Yesterday we got permission to bring Julia and Lauren to Nathan's room for a few minutes. He still has a private room today but he will for sure be moved out tomorrow.

I sent an email to Nathan's doctor asking him to consider releasing Nathan. He feels it is too risky. He and the attending doctor have agreed to let Nathan have daily passes out of the hospital instead. We will be celebrating Lauren's first birthday tomorrow and will do it back and the Ronald.

His doctor agrees that Nathan's counts are probably not going to come up. He said that if Nathan's scans are good and the HAMA is negative AND his counts are still low he will actually be eligible for one more round of the hot antibody. I imagine if this is the case Nathan would be in the hospital for many more weeks. That will be a difficult decision - we'll just have to wait and see if we need to make it or not.

As it stands, since my pleas to release Nathan failed, he will likely be inpatient another 2 weeks. He would get his stem cells next Friday and then be released when his counts come up - which could take another week.

I don't even want to think about how we are going to get Christmas shopping done.....

Tuesday, November 14, 2006 8:16 AM CST

Yesterday Nathan's white count went up to .3 but it is back down to .2 today. His red blood, however, went from 8.2 to 8.8. It is strange it went up since his whites and platelets continue to stay/go down.

They will not be running the HAMA test today because his blood is still too hot. In some ways that is good news because that means the radiation is still in there doing its job. Since they think Nathan is forming a HAMA and wasn't as initially hot as last time I think they expected his blood not to be hot anymore.

They did take Nathan off of isolation yesterday and so he can leave the room now. This also means he will likely get moved into a shared room soon.

We wish we could get Nathan out of the hospital but MSKCC doesn't seem to ever use home healthcare to provide IV antibiotics. If we were at home we would, for sure, be out of the hospital by now. It is very frustrating.

Sunday, November 12, 2006 11:41 AM CST

Nathan is doing well again today.

I am seeing the "real" Nathan today. He is smiley and lighthearted and loving. While we have been in NY I have seen less and less of these traits. All of this is hard on him and I know he will be unhappy and act out again but it is nice to see it for a little while.

His counts are the same - no upward movement yet. He doesn't have any fevers today and seems to be feeling quite well. He has been eating really well too.

I am hoping they will test his blood for radioactivity tomorrow or Tuesday and then we can know if they will run the HAMA test yet and also if he is elegible to receive his stem cells back if he needs them.

I was wistful to see that Nathan and Julia's church choirs are singing in church this morning. I SO wish they could both be there singing (as well as ME singing in the adult choir). I keep telling myself not to feel that way and to just keep being patient and concentrate on where I am and today and not where I wish I was and on the future. It is hard though.

Saturday, November 11, 2006 3:53 PM CST

Nathan's counts were about the same today. He needed platelets, of course but the whites are still low and not coming up.

I went to the Bronx Zoo with Julia and Lauren (with the Ronald) today and so Luke was with Nathan until late this afternoon. He said they had a good day but before I came Nathan decided to nap and is still sleeping. He looks a little flushed to me and I wonder if he may have a fever again.

His doctor said that if all cultures continue to come back negative they will let him out when his counts trend upwards. So - he doesn't need to hit a magic number - just show he is coming up. Until then, they need to continue the IV antibiotics around the clock. I think he is on three of them.

Tomorrow I will probably spend most of the day here since Luke spent all last night and most of today in the hospital. He will be back in a few hours for the night since I have to be with Lauren. Luke and I only get to see each other in passing as we trade off jobs. It stinks!

Friday, November 10, 2006 12:24 AM CST

I am happy to say that Nathan is feeling better today. His counts are not any better but it is a relief to see him feeling well.

The new picture is one I just took a few minutes ago. You will see that he has quite a bit of hair again.

Today Nathan will get his fourth Avastin infusion and also get pentamidine (helps prevents respiratory diseases). His cultures continue to come back negative for any infections.

They upped his dose of neupogen (boosts white blood counts). Lets hope he responds and starts making some! He is so upset about gettin gthe neupogen. Here at MSKCC they only give neupogen by shot. He is used to getting it by IV at home.

Well - I need to go get Clue Jr and Life so we can get to some game playing.

p.s - new pictures on our family web page

Thursday, November 9, 2006 9:31 AM CST

Nathan's counts are actually worse this morning. His ANC (immunity) has been zero for a while but his white count dropped from .2 to .1 (I don't think it goes any lower than .1). I guess I shouldn't be suprised because Nathan is 2 weeks out of his second hot antibody infusion. The low blood counts thus far are the product of the first infusion. So - he was already low and now the second round is beginning to hit him. He is still having low fevers and coughing alot. All his cultures are coming back negative, thank goodness.

They will test his blood on Monday to see how radioactive it is. If it is low enough they will run the HAMA test and also he will be able to receive his stem cells if neccessary. He cannot receive them while his blood is still hot. If they wait until day 29 to give back the stem cells that will be Thanksgiving. If it looks like he will need them I think we will ask for him to get them a few days before hand so he can be out of the hospital for Thanksgiving.

At this point I cannot see a scenario where he will not get his stem cells back. If his counts do recover on their own and he does not have a HAMA we are not at all certain we would let him have another round. It is so hard to see him stuck in the hospital sick. His quality of life in the last few weeks with all the nosebleeds and now low counts is crummy. This is not what we want for Nathan. I think when Nathan gets his scans next week we will have a better idea of what the best thing is for him. We continue to hope these scans show a very good decrease in disease again.

There are probably no more treatments for Nathan at Sloan after this. We have a few other things in mind for him that we need to make some contacts for. We will not do any more treatments that will affect his bone marrow after this.

So - here we sit....I will update again tomorrow or if anything changes.

Wednesday, November 8, 2006 8:14 AM CST

Nathan's fever went up to 103 yesterday afternoon and so we decided it was time to go inpatient and get him some antibiotics. It was after 5:00 so we went to urgent care and from there he went to the inpatient hospital late last night. Luke stayed with him and said he coughed all night and neither of them got mcuh sleep. Nathan is still resting this morning.

We will definately be inpatient for several days but we will have to speak with the doctors about when he will get out. We know their policy but we will have to see what we can work out.

I will update later.

Monday, November 6, 2006 9:00 PM CST

Well - we are still all in our own beds tonight.

Nathan had a low fever this morning and is still coughing and complaining of throat pain. He perked up a little after getting to the hospital and actually did school for about an hour.

He needed red blood and we had just been hanging around waiting for someone to look at his counts for 3 hours (got to love a Monday) so he spent the rest of the afternoon waiting for and getting blood. They had a bed for him so that made him happy.

His temperature was still just a low temp all afternoon so we escaped hospitalization. This evening it has crept back up and he laid around and dozed off curled up with Luke after we got home. His throat still hurts but the doctor checked him out thoroughly and says it is just raw from post-nasal drip. He gave us the OK to give Nathan tylenol for his throat pain. Usually you are not allowed when a child is neutropenic for fear of masking a fever. Since this doctor is on sabbatical from Italy perhaps he had a different take on it. I wasn't about to argue though.

We have had some good dinners at the House lately. The other night we had salmon that was caught in Alaska and the people who fished it brought it here and grilled it for us. Tonight was a Greek group who made grilled chicken, rice and salad. It is so refreshing to have nutritious food for once. I miss cooking and so I decided to make my easiest meal last night. It was a soup. By the time I bought all the ingredients the pot of soup cost $20. It was almost not worth it! Thank goodness there are severl dinners a week at the House. Still - it is hard to eat healthy. There is way too much pizza and pasta and that is the only affordable food.

We have actually been given a day off tomorrow. I doubt Nathan will be up to doing anything but since it is even a school holiday we don't need to go in for school so we can stay away from the hospital. We'll see if things change by the end of the day...

Sunday, November 5, 2006 8:09 PM CST

The weekend is over and Nathan is still not in the hospital! We have had some close calls though.

Saturday he continued to feel crummy and had a low fever. We did some laundry and stayed close to the Ronald. Saturday evening his fever started climing and his cough got worse. His fever was high enough that we were "supposed to" call the doctors and put him in the hospital but we chose to monitor him closely ourselves. He was up alot in the night with coughs and very slight nosebleeds.

This morning I had to wake him up to bring him into urgent care for his platelets. His temperature was low enough to read normal on thier (too big for his ear) thermometors. IT took about 3 hours and we were out of there. The nurse had no orders to check blood counts - so I don't know what they are. She ignored his hacking cough and didn't see the few hives he had when she was letting him leave. I was thankful for that.

He rested the rest of the day and didn't eat much because e feels so bad. His fever climbed up again and he had some more hives so we gave him some benedryl and that seemed to have helped the fever by getting rid of the allergic reaction. He is now sleeping peacefully and we wil keep an eye on him tonight.

It may sound crazy that we are not taking this child with cough, fever and no immunity to the hospital but we are in a different stage of this whole game and quality of life is one f the most important considerations right now. Our doctor at home has trusted us to keep Nathan at home with fever and neutropenia knowing that we know what to look for - so we feel qualified. I feel his cough is directly related to all the blood down the back of his throat and the intense throat clearing he did trying to get the clots out the other day.

If we can get in and out quickly tomorrow we may avoid the fever at the hospital. It seems to climb at the end of the day. We are just crossing our fingers that they will not measure a fever on him. He will have blood counts and we'll see what he needs.

I am so used to calling the shots with NAthan's care. His local doctor will look at his counts and ask me what I want to do with transfusions and give his advice but I am never told "they are giving him blood today - it is already ordered". I know I am very spoiled but I really like being part of the decision making. It helps me to safeguard Nathan's quality of life.

We got to watch some of the NYC marathon today. It runs right next to the Ronald. I saw Lance Armstrong and one of Nathan's doctors run by. It was a very interesting social event as well.

I will update again tomorrow.

Friday, November 3, 2006 7:56 PM CST

According to Nathan's nurse today we should have gotten paid since we spent her whole shift with her at the hospital.

Once again, the day started out with a nosebleed. It was just a light one at first but persisted so I headed off to the day hospital with him around 7:30. As we waited for a finger stick his nose started gushing and it turned into a VERY BAD nosebleed. Nathan was so upset because blood kept filling up his mouth and blood clots would form and e could not get them spit out. It was really horrific. This time one of the nurse practitioner from teh neuroblastoma team witnessed the severity so she got the platelets ordered quickly (though they were not THAT low at 41,000). She also determined that something just had to be done this time.

So - after about 2 hours the bleeding stopped exceot for an occasional dribble. ENT was paged once again but were told by the team to do something besides just look in his nose and tell me how to pinch it. The ENT doctor cleaned out his nose and got a good look in there. He was prepared to cauterize but really didn't see any vessels to seal shut. He said NAthan's whole septum looked raw. He gave us some helpful pointers that I hope will keep the nosebleeds away or make them more manageable next time.

The team also decided to give NAthan some sort of medicine for nose bleeds. The ENT had never even hear of it and so the nurse practitioner admitted it was something they didn't use anymore but were desparate. They gave it to Nathan by IV today and we have it to give him orally this weekend.

They do not feel Nathan can make it to Monday without platelets and so he will get some in urgent care on Sunday. At least we (hoepfully) will get Saturday off.

Nathan's ANC is still zero (white count is still falling). His hemoglobin was 8.5 this morning in hour 1 of the nose bleed. This afternoon (post nosebleed) it was 6.4. Poor thing lose a lot of blood. So - that was why it was such a long day since he got blood as well. With all the fluids his blood pressure was, of course, high. They gave him the lasix quickly this time and he peed out some fluid and the pressure started down and they let us go.

Nathan's temperature is still a little elevated. Nathan normally runs quite low and he also reads low on ear thermometers if you don't do it just right. This is working to our advantage because he came very close to the threshhold for being admitted. Fortunately - he is here at the Ronald sleeping instead of at the hospital. Now we just need to avoid another nosebleed because if it bleeds again they will admit him and pack his nose and give him IV antibiotics due to the packing. Ia m not at all confident we can avoid being admitted. We'll see.

I talked to the doctor a little today about his counts and he said that if NAthan's ANC is still below 500 on day 28 of the treatment cycle he is mandated to give Nathan his stem cells back without further treatment. He is also weighing the decision to give him the Avastin next week since it could be causing the nosebleeds but he feels that the potentila benefit of the avastin outweighs the nosebleed factor still. He said the next MIBG scan will be telling. He also said that the avastin could actually hinder the hot antibody from doing its job by killing the blood vessels to the tumors so the antibody cannot get there. From what I understand the combination was successful in the lab but I guess I didn't know that this was a possibilty.

The MIBG scan Nathan had on Monday was fainter. This is either because NAthan is forming a HAMA (antibody couldn't get to the tumors) or the avastin is keeping the antibody from getting to the tumors or NAthan's disease is actually that much better.

This is getting very long but I think I hit on all the important parts.

I will update again tomorrow or Sunday.

Thursday, November 2, 2006 8:27 PM CST

Nathan officially has zero immunity and he feels crummy. He is flirting with a fever but the cheap thermometer we bought here seems to have a 3 degree range eacht ime we take his temperature so we don't really know. We are keeping an eye on him and if starts looking bad we will take him in.

He didn't need blood or platelets today and so it was not too long of a day at the hospital.

I will update tomorrow - hoepfully Nathan won't be put into the hospital.

Wednesday, November 1, 2006 8:57 PM CST

Just a quick update. Nathan's ANC dropped to 200 and his red blood dropped quite drastically. So - he had some red blood today and continues on his shots to boost his white count.

Nathan's blood pressure was a little high after the transfusion but not too high to keep us there.

Nathan had several minor nosebleeds in the night last night and it continued to dribble all day. He still has plenty of platelets so I guess that is why it didn't gush. There is nothing we can do about the bleeding. He is so sick of it!

I sent him to the hospital classroom today to join the other kiddos for some school. He did well and I think he enjoyed being part of the group.

A volunteer in the playroom started teaching me how to knit today. I found it quite relaxing. If I take it up I had to promise Luke I would never knit him a sweater he would feel obligated to wear. The image of his wife knitting is a bit much for him!

We go back tomorrow....even if Nathan doesn't get any blood products we are always there at least half a day. At least he can go ahead and do his schooling while we are waiting around.

Tuesday, October 31, 2006 8:33 PM CST

Nathan started the day with some minor nosebleeds that fortunately never really progressed past the seeping stage.

We went to get counts checked and his platelets were stil "high" from the transfusion yesterday at 71,000. His other counts were the same as yesterday (Which was a pleasant surprise because though they were not good they could ahve been worse today). The doctor decided to give him platelets anyway due to the nose. It was nice to escape the red blood transfusion so we didn't have to stay at the hospital all day.

They had tons of activities at the hospital included a very telented magician who is also the ringmaster of the Big Apple Circus. The kids enjoyed the activities and then NAthan got his platelets and they took the kids trick or treating around the hospital. After that we went home and rested for a few minutes and got ready to go trick or treating again. This time we took a van to a building where one of the Ronald employees has his other job. After much waiting the kids went up and down the elevator trick or treating. Many times there was just a bowl of candy outside a door but they did get to knock and yell trick or treat several times. That's what it is all about after all.

We got home and had an hour before the nexy event, a party at the house began. There were the usual crafty activities and pizza. The kids mostly had fun playing with each other. Nathan and another boy were both dressed up as poice officers and had a wonderful time as partners running around the playroom doing police work.

All the parents are glad that HAlloween is finally over! Now - to get rid of the pounds of candy!

Tomorrow they want to check Nathan's counts again. I tried to get a day off but with his white count so low they said he had to come in. It will undoubtedly be at least a half day there.

So - a good halloween! I am especially happy that NAthan and Julia got to spend it together.

Chekc out some pictures in the photo album on the caringbridge page.

Monday, October 30, 2006 6:33 PM CST

We did manage and medical event-free weekend. Unfortunately the day started off with a bad nosebleed. At least it waited until Monday.

We were getting ready to go to the day hospital at the time and so we just hurried up and went over. The bleeding stopped for about a hlaf hour in the middle but otherwise he bled for 4 hours again today. It was awful,as usual, with bleeding eyes and blood running down his throat and him spitting out large blood clots. The poor thing was SO upset that it just wouldn't stop.

They gave him some platelets and we postposed the MIBG scan. After the platelets we had another worthless consult with the ear nost and throat people. I don't know why the NB team keeps calling them. They tell me how to stop it (doesn't work) and how to prevent them (doesn't work either). Unfortunately we are just going to have to keep dealing with it for now. The bleeding stopped after the last of the platelets went in.

Nathan will most likely need red blood tomorrow and his ANC is 300 which means he is neutropenic. We are not really going to let it stop Nathan from doing whatever he wants. I am a little concerned though because here in NY when they get a fever with neutropenia they are admitted and kept until the ANC gets above 500. If this happens to Nathan it could be 1 - 2 weeks. This is not something Luke and I agree with and so we may have a battle on our hands.

We have not talked further about going home. With the nosebleeds and the low ANC we are not going home in the next few days for sure. We also do not know when Luke and Julia will go back. It is so good to be all together but it is hard for Luke to work and he doesn't have a whole lot of vacation time. It is also a little crazy with 5 people living in a hotel room. Don't get me wrong - I would rather have them here.

Julia has been a little overly emotional. This is all very hard on her and there is onlt so much Luke and I can do to help her. Lauren is still sleeping horribly. We suspect she is teething and so we will try some ibuprofen tonight.

I am just exhausted beyond belief. I left Luke with the kids decorating cookies and came up to the rooma nd took a hot back and have spent some time by myself. It was sorely needed. Poor Luke will need to recover now.

Lots of halloween activities at the hospital and the house tomorrow. I will have lots of pictures to share - we already have some good ones!

Happy Halloween to everyone!

Sunday, October 29, 2006 11:39 AM CST

We did get to go to Mary Poppins! A big thanks to
Giant Kids for the tickets. Giant Kids is a charity run by our friend Garrett's parents. There were extra tickets and I was able to give them to friends at the Ronald. The van was available and so we even got a ride to and from the musical.

It was fantastic! Nathan and Julia love the movie and the musical had all the best songs from the movie. The set was amazing and the choreography was so good. They enjoyed it immensely and I think Luke and I liked it just as much.....if not more!

I still can't believe it worked out!

This morning there was breakfast at the house and then Nathan took a little nap. There is lunch and crafts in a little bit and then Luke and I signed up fro free massages this afternoon. Tonight there is a halloween dinner party at a mexican restaurant. It is good to have some fun for once!

We go to the day hospital tomorrow for counts and an MIBG scan (as part of the study). Afterwards we should get to talk to the doctor about what we might do next and if we might come home soon. Alot of that depends on Nathan's counts. He has been getting shots to boost his white count so I am hoping it is not too low.

I will update agian tomorrow.

Friday, October 27, 2006 10:07 AM CDT

Update Saturday morning:

Luke and Nathan came back around 12:30 am. They had to give Nathan a diuretic to unload some of the fluid from all the transfusions he had yesterday.

This morning he was tired but had now perked up. We are trying to get him to be careful and not start a nosebleed so we can go see Mary Poppins. My aunt Joan is going to babysit Lauren so Luke and I can both go.

Keeping our fingers crossed...

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

Update - 9:27 PM

The high blood pressure reared its ugly head again after Nathan's blood transfusion. This time it is just not going away. He had actually been "discharged" but is still in the hospital waiting for his blood pressure to go down. We don't know if he will be readmitted or just come back to the Ronald in the middle of the night when it is resolved.

They didn't pack his nose because it had stopped bleeding. Shortly after the ENT left it started seeping again. That may also keep him in the hospital.

We have once again missed a fun outing tonight and tomorrow we have tickets to the Mary Poppins Broadway musical. What are the chances we will actually get to go???? Can we please get to do one of the fun things? Nathan and Julia adore Mary Poppins and I can't stand the thought of another disappointment. The disappointments are adding up big time...

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

Nathan had a good night. He woke up at 7:30 last night and stayed awake until 11:00 pm and then went to sleep for the night.

This morning he has had nosebleeds off and on. He already received platelets but is still bleeding. The doctor ordered more platelets and red blood. Nathan also has to start G-CSF shots because his ANC has gone under 1000. The ENT people are going to come in and pack his nose. Nathan is also going to get the Avastin this afternoon.

Nathan's radiation level was already low enough to be released this morning. His doctor says he thinks Nathan now has a HAMA because it was heading that way and the radiation clearing more quickly is also a sign.

They will probably check his HAMA after he receives the second infusion of Avastin. It will most likely be positive and then he will be taken off of the study.

There will be many discussion about what to do next - but we need some time to go by first. If it looks like Nathan will need stem cells to recover from the hot antibodies then we will want to give him one more big hit of something or other to maximize all therapy before he gets his last bag of stem cells back.

So - that's where we stand this morning. I will update again tonight.

Thursday, October 26, 2006 9:18 AM CDT

Evening update:

Nathan got the antibody around 2:00. His pain was not as severe but his throat closed up and his oxygen levels fell to below 70 They got him on a mask and got some medicine to reverse the allergic reaction. He perked up pretty quickly and then had some residual pain and then went to sleep. Luke is with him tonight.

We foudn out that although his HAMA was negative it was beginning to form and it is very likely he will form a HAMA after this round. This is not very good news but having gotten two rounds in is a good thing. It takes 6-8 weeks for to see the total effects of the antibody in scans and we scanned after only 3 weeks. So there is hope the two rounds and several more weeks will show greater improvement...even if he can have no more.

His radiation level was higher this time so we'll just have to see if he makes it out of the hospital tomrorow or not.
***************
Nathan is inpatient and awaiting his antibodies later this afternoon.

Nathan didn't need either blood or platelets yesterday or today! I am not sure why he is retaining the platelets better but I will take it. He will probably need some by tomorrow. Yesterday, he woke with a very small nosebleed and today there have been no signs of a nosebleed.

We got permission to check Nathan into the hospital late last night so he could enjoy a halloween party at the Ronald. As it turns out it was not a very big party but Nathan and Julia had a great time. We were out of the day hospital by noon and so we bought an extra 8 hours together instead of stuck inpatient.

Nathan's blood pressure is high again - this time without any blood products. It is not overly high and so they are not concerned. High blood pressure is a potential side effect of Avastin so I suspect that may be a cause. I was looking at the trial documents last night and I also saw that nosebleeds are a side effect.

We are going to talk to the doctor about going home. He may be willing to make that happen - but my primary concern is that nothing happens that takes Nathan off this study so I need to understand what the risks are.

I will update later after the antibody is administered.

Tuesday, October 24, 2006 5:12 PM CDT

HAMA is negative!

There was also another potential problem because when Nathan needed blood after his nose bleed they had to report that to the FDA as "grade 3 toxicity". The FDA had to respond today if Nathan had to be taken off the study. They didn't hear anything and so he can have another round. This is such a relief! They told me about this problem this morning and so I had double the stress all day.

Nathan had blood and platelets today. They are going to keep his platelets at 50,000 and so he will be having platelets almost every day if not every single day. I see more weekends spent at urgent care in our future. He will also probably get blood every 3 days or so. I am not sure what this means as far as going home...one step at a time!

Nathan had high blood pressure after his blood once again! I guess he is just going to keep doing this and I should just plan an extra hour at the hospital afterwards for it to come down. It is still high but on its way down.

Luke and Julia arrived this evening and we just finished a family dinner together!

Monday, October 23, 2006 9:42 PM CDT

We have had a few better days. Sunday Lauren woke very early and went back to sleep around 6:30 am and so we all slept in for a while. At our late breakfast we learned there would be a lunch and crafts shortly and so we stuck around for that. The volunteers were from a local temple and very, very friendly and nice. They had all kinds of Halloween crafts and they truly enjoyed helping all the kids do them while the parents got a break to chat and eat. Nathan decorated some pumpkins. Immediately after that, there was cookie decorating for Dylan's Candy Bar (awesome candy shop). Ralph Lauren's daughter, Dylan owns it and she came with helpers to have the kids decorate cookies that the store will sell for $10 a piece to benefit The Ronald.

After the cookies I ran out to do some errands without kids (Yes - I do have support here...my mother!). We then went out and had a a good dinner. Lauren LOVES this particlur restaurant and quietly ate rice the whole time we ate.

Today we got up early (but Lauren finally slept to a decent hour!) and went over to the hospital. Nathan's platelets were 49,000 and I think everyone agreed he should go ahead and get some more! He got them and we were back at the Ronald by 1:00 or so.

After a while I went out with Lauren to do some shopping and pick up some medicine. Nathan was tired from his premedications and so he rested and watched TV.

Tonight there was a "western party". They had a live band, food, dancing and cowboy hats - oh and I can'f forget...wine and beer! It was a really fun party. Nathan loved dancing.

We finalyl got to bed even though Lauren was way too keyed up to go to sleep. She loved the party too and even was clapping with everyone. She has been taking lots of steps and I think she will be walking full-time in the next 2 weeks.

Tomorrow Nathan has an echo (heart test). They are going to go ahead and check his blood counts but hopefully he will not need more platelets or blood.

The HAMA test will also be run tomorrow. The results will be ready by 4:30. I am going to try not to think about it too mucn. We need a NEGATIVE test result!

Luke and Julia will arrive tomorrow evening. I can't wait for us to all be together again!

Saturday, October 21, 2006 8:15 PM CDT

I am sorry to report that today was a crummy one!

Instead of at the circus our day was spent in Urgent Care.

Lauren was up crying since before 5:00 and then Nathan woke up with a bad nose bleed. Once again his eyes were bleeding as well and it was also running down his throat. After one and a half hours it had slowed down some but not stopped so I took Nathan in to urgent care.

We still thought he might make the circus but he didn't get his platelets until 10:45 and his nose was still bleeding. His platelets had dropped from 40,000 to 12,000 in one day. The doctor had to come in and pack NAthan's nose to get it to stop bleeding. It had been over four hours! They then informed me that despite his red blood transfusion just yesterday afternoon he already needed another one. So we settled in for the afternoon.

After his transfusion his blood pressure was high again so we hung out some more. There was also a lot of concern and phone calls made over a simple request to keep Nathan's port accessed. The fellow (doctor) PAGED the neuroblastoma doctor to ask her if it was ok!!! She got no answer but I assured her that Nathan had even been to school many a time with his port accessed and that I, myself, access and deaccess it all the time. Jeez! Poor guy just wanted to keep in in for Monday.

So - we finally left around 4:00 after 7.5 hours there.

NAthan was SO disappointed and cried about missing the circus. I am just so tired of all the disappointments lately. He goes through enough and he must just feel like everything is against him. He just wants to be a kid and have fun and the medical stuff has been getting in the way too much lately. Today it was nice and sunny but of course tomorrow it will be cold and rainy and Nathan had wanted to go to the zoo. We will try to find something fun for him.

I am physically and emotionally exhausted to the point of not dealing with Nathan all that well right now. I don't blame him for whining and misbehaving but I can't tolerate it either.

So - considering he had both blood and platelets today there *should* be no hospital visits tomorrow....

Friday, October 20, 2006 2:22 PM CDT

Tests are all done.

Yesterday, Nathan had his bone marrows scheduled for 12:45. He couldn't eat until they were done but he had some jello for breakfast since it counts as a clear liquid. He didn't get the bone marrows done until about 1:30. He was a trooper - he wasn't so happy about going so long without food but he didn't throw a fit about it either.

Afterwards he had his MIBG injection and then we went back to the house and he played and had some dinner. During dinner he got nauseated and threw up. I think it was due to the various medication he had been given during the day.

This morning we headed out early for a cat scan and MIBG scan. The MIBG scan was almost 2 hours long and that is very hard for Nathan to lay still. I held up the DVD player and he watched Scooby Doo episodes.

The checked his counts and he needed red blood and so he is getting a transfusion right now as he plays in the playroom (at the hospital - I am using a computer there).

So...news..

His doctor stopped me a while ago to tell me that the MIBG scan looked like it had improved and the urines were a little better. So - he qualifies for another round based on that criteria. The HAMA test will be run for sure on Tuesday. The doctor knew he had another week anyway and wanted to let the radioactivity go down - but they will run at at what ever level it is on Tuesday. As long as the HAMA is negative he will receive the antibody again on Thursday (the 26th).

It is a relief to have a semi-plan in place and we just need that HAMA to be negative!!!!

I was handed a copy of the MIBG report a few minutes ago and I like what it says. To summarize it says "Overall there is a marked decrease in MIBG-avid disease in the axial and ppendicular skeleton. No new suspicious MIBG-avid lesions are identified."

We are still waiting for bone marrow results but wouldn't expect anything there.

Luke and Julia will be coming back on Tuesday so Luke can be here for the hospitalization this time. That will give me a bit of a break since I feel like one of his parents should be there during the day to speak with the doctors. Last time I hardly saw Lauren and that was hard on her.

I am not sure when we will return home. I am hoping we may be able to come home on Halloween and stay for about 8 days. Things are always changing though so we will see.

The Ronald is taking us to the circus tomorrow. Nathan is very excited. We will hopefully have a hospital-free weekend this time.

Tuesday, October 17, 2006 5:57 PM CDT

Nathan's blood was still to hot (radioactive) to test! So no HAMA results. They only run the HAMA test on Tuesdays so they will try again next Tuesday. I will meet with the Doctor on Friday to discuss what that may mean for when he will get the second round (if it is negative). He won't get it next Wednesday for sure now because the lab needs 24 hours notice to make the antibody. I know they have another patient on Thursday (Hi Rhonda and Carter!) so I doubt he will get it that day either. So - more waiting...my favorite thing... Hah!

After all the excitement of the past days (oh - I should mention Nathan had a bad headache yesterday and then he got nauseous last night so I was concerned about late effects of the head injury. Fortunately he has been fine today) anyway - I didn't want to do anything today. We stayed at the house all day. Lauren even slept until 6:00 without a peep! I am still SO tired from everything that has gone on.

Lauren has a new friend. There is a boy (8) who loves to play with her. He carries a ball around in his pocket and he plays so nicely with her. She saw him in the dining room tonight and called for him. She even very clearly said his name, Adam. She went crazy waving at him and trying to get his attention. Unfortunately he is leaving in a few days. She will miss him!

Luke told me it is snowing at home - that made me instantly homesick. He also made me homesick when I saw pictures of Julia singing with her choir at church and I could see the adult choir in the picture too. I SO miss choir! If anyone from choir is reading this - please say hello to everyone from me.

I never wrote about the plane crash in NY last week. The bulding that got hit is only a block and a half from here! I made the mistake of going out for groceries after it happened and it was crazy on the streets. Byt he time I was done shopping they had closed down the street to get back to the house. Fortunately someone came to the corner from the Ronald to escort people back.

Nathan is laying on the bed in his new Halloween costume. It is very cute. It didn't come with the belt like I thought it did so I had to order one express shipped here. There is a Halloween party at the house next week.

So - that's it from here. I will update again soon.

Monday, October 16, 2006 12:52 AM CDT

More excitement...

After a calm day on Saturday Nathan awoke with a nosebleed. It bled for about 40 minutes and his eyes were bleeding a little too. We decided we should probably get him back to Sloan and so Marianne drove us into the city and we went to urgent care. They gave him some platelets and ordered another Cat scan. We had to wait forever for the cat scan to be read by the ONE pediatric radiologist who was covering 2 hospitals that day. The cat scan was fine but we spent all day there.

This morning we went back to Urgent care for some bloodwork and an exam. Everything was fine and they took blood for the HAMA test that they will run tomorrow. I asked to be called with the results.

We are free (*knock wood) for the hospital until Thursday. Tomorrow Nathan can go back into the public areas of The Ronald.

Nathan has his tests and scans on Thursday and Friday. I expect we will know by Friday afternoon if they are OK (not worse).

Until then - we will try to have a ltitle fun around here!

Saturday, October 14, 2006 8:09 AM CDT

Nathan got his counts checked Friday in Urgent Care. He didn't mind being there because he got his own room with a bed and TV. His platelets had dropped from 61,000 to 37,000. I guess the team wasn't concerned because they did not come down to see him.

We (Nathan, Lauren and I) headed off to our friends' house on the train. We know them from when both our boys were doing antibodies together in 2004. Garrett is still in remission and doing great!

We hade a big scare last night. Nathan went to the bathroom and turned left too soon and somehow managed to unlock the basement door in the dark and stepped off and fell down the basement stairs. I was far away at the time and so Marianne heard the thump and thought he had fallen out of the bunkbed but instead found him laying on the basement floor! He had a large bump on his head. I called Sloan's on-call doctor and they felt he needed a CAT scan of his head to make sure there was no internal bleeding with his low platelets. We headed off to the local hospital and arrive around 2:00 am. He had the CT scan and we were out by 3:30 which is great in an ER. His head is absoluetly fine (though they noted his sinuses were completely full...yep - we know that!). This morning his lump is down and he is perfectly fine.

It was horribly scary. He was so lucky he fell on his back first, we think, because he has a small bruise on his spine. If he had gone head-first I don't even want to think about what would have happened.

I had wondered if we shoudl mae the trip with the low platelets and thought that the worst that could happened is we would have to be seen locallly - and I guess it happened. Alls well that ends well.

Nathan is having a great time - as am I. Now if Lauren would only sleep.

Thursday, October 12, 2006 8:41 PM CDT

Things just don't seem to be going our way. Not big things but lots of little things and it is getting to me.

As most of you know, Nathan has had a runny nose for 3 years. It is very runny. He has a little cough so I put a mask on him. Unfortunately he saw a doctor who doesn't know him well (well I should say she *saw* him - didn't even examine him) and she decided he needed to be swabbed for the flu virus and put him on isolation. He cnnot go to the peds floor and cannot go into any of the public areas of the Ronald for several days. He has to go to Urgent Care until he is "freed".

We are going to go to visit friends for the weekend so we don't need to worry about the Ronald restriction. We went to my aunt's for dinner since he couldn't be in the dining room. IT is just so frustrating. I understand why they have th rule - but it shouldn't have been applied ot Nathan. Things are hard enough for us and we didn't need something to make it even harder.

Lauren is also making things hard by not sleeping well. If we were at home I would have her "Cry it out" but I can't exactly do that here. She doesn't even calm down much if I bring her to bed - which is hard anyway being in a single bed. She is developing some bad sleep habits and I am not doing well with the lack of sleep. She needs her own room again.

I have been struggling with having our family be apart and I got to ask some questions of the doctor about this treatment and its possible effects. With Nathan being the first they don't know - but it seems like he expects Nathan could have a very good response. He even said that they are hoping this could be curative. That is shocking to me and I really highly doubt that could be the case. Nathan will certainly need more than one round though and that is not a certainty right now. We just wanted to know that there is hope that after this treatment Nathan could have some prolonged period of being stable and being home and going to school. We need to know that this current sacrifice could be worth it. I think the answer is yes. Now we just need the HAMA test on Tuesday to be NEGATIVE. If it is positive he is done with the trial. Please keep this test in your prayers!

Nathan also has scans next Thursday and Friday. They need to show that the cancer has not gotten worse in order for him to stay on the study.

Nathan's counts were good except for his platlets - which have dropped to 61,000. They do not transfuse until 10,000 here so we don't need to worry about that right now. I think they would have to transfuse before the next hot antibody infusion for the study's sake.

Nathan got the Avastin today with no trouble. They will take his blood and check his blood pressure tomorrow (at urgent care...ugh).

So - I think that wraps things up....

Tuesday, October 10, 2006 8:17 PM CDT

Things are still going well here.

Luke and Julia left early this morning to go home. We miss them already. My mom arrives tomorrow.

On the medical front - Nathan had bloodwork on Monday. His counts are dropping but no need for any transfusions. We are off until Thursday when Nathan gets the Avastin and Pentamadine(once a month maintenance drug - not a chemo). His scans are scheduled for Thursday and Friday of next week. Oh - and I am guessing he will go in this Friday to see how he is doing after the Avastin. He had high blood pressure last time.

Nathan is still full of energy and having a good time. Today we slept in after Julia and Luke left (and Lauren was up crying at 5:00 as well). After breakfast we relaxed in the room. We decided to go to a costume store and so went off on the subway and had lunch at Johnny Rockets and then stopped by the store. I snuck in a visit to Trader Joe's as well and then we came home. I ended up ordering his costume since they didn't have the right size. He is going to be a policeman. I need to get one for Lauren as well or else have Luke mail me the one we used for Julia. We may or may not be here for Halloween but there will be several parties before the big day.

I found out today that a little girl from our local clinic passed away. I had been keeping in touch with her mom and hadn't talked to her since I had left for NYC. Please keep Nevaeh's family in your prayers. Another friend's son, Justin, has gone home with no more options for treatment. His Dad is a wonderful person and has been a great friend to me whenever we are in NY - years back he took us on a day trip once when we were here alone for the weekend and it was one of the best experiences I have had in NYC. There are numerous other children here - so I can't start listing them all. Some are doing well and some not. Some parents are dealing with relapse and some hospice. It is a little harder for me to ignore the realities of this disease when I am amid all these other families. Still - I truly enjoy the companionship of this diverse group of people and I am finding it is one of the silver linings to this cloud.

I will update again after Thursday's treatments.

p.s. new photos in caringbridge photo page

Also - new photos on family web page

Sunday, October 8, 2006 8:05 PM CDT

We have had a good weekend. Friday we went to Times Square. Julia loved the giant Toys R Us and we rode the Ferris Wheel this time (there is a Ferris Wheel inside the Toys R Us).

Saturday the weather was not very nice and we spent the whole day in the Ronald McDonald House. It was actually nice hanging out as a famiy and taking it easy. They also had several meals and we spent time talking with friends.

Today we had a very nice brunch at a new favorite restaurant. Afterwards we went to Dylan's Candy Bar and then on to Herald Square for some shopping. Luke, Julia and Nathan had a snack in Macy's while I shopped at Old Navy and got a booster seat/high chair for LAuren at KMart. They have the restaurant style high chairs here at the Ronald but she gets right out of the straps and stands up - plus without a tray her food ends up on the floor. She is just getting so matures. She wants real food now. So - we actually had a nice dinner tonight with her securely strapped in eating angle hair pasta off her tray.

Tomorrow Nathan goes to the day hospital and it will probably take several hours because of how busy it is on Mondays. He continues to feel wonderful.

Luke and Julia are leaving early Tuesday morning and my mother is coming in on Wednesday afternoon. It has been so wonderful being all together. I will be sad to see them go. Sometimes I really get the urge to just go home and pretend none of this is happening. It is hard having been away from home for several weeks and knowing there are still several weeks until I MIGHT be able to go home. I miss my friends, my bed, staying up in a room with lights on after Lauren is in bed, my minivan...(of course my family but they are all snug in this room with me right now!).

Anyway - I will keep on doing what has to be done and if I have to be living away from home NYC is certainly a great place to be doing it.

Thursday, October 5, 2006 6:00 PM CDT

I am happy to update that things are still going well for Nathan. His counts are still good (platelets dropped a little - so we will just have to see if this is a sign his counts are dropping). His blood pressure was right back to normal and all his labs are fine. He does not have to go back until Monday.

We had time to go to the Central Park Zoo this afternoon. Nathan has been wanting to show Julia around there and they had a very good time. I took all 3 kids by myself (so Luke could get some work done) and so I am a little tired out.

There was a dinner at the Ronald tonight so it was nice not to have to go out and get food.

I am trying to recall our two days off. Tuesday we went off walking to Barnes and Noble to get some books and the Little Mermaid DVD. Afterwards, we walked to my aunt's place and huing out a little and went for some lunch. Nathan and Julia didn't really want to walk all the way back (over a mile) but I sort of tricked them into it by making some stops. We bought Lauren some shoes since she is very close to taking steps (her feet are so tiny I had to buy size 2) and we also stopped for a snack at a coffee shop and borwsed at a toy store. They did great walking that far.

Yesterday was not as good a day. I can't really recall what we did in the morning - maybe just stayed in the room? I was going to take them to the zoo but I decided I needed to see a doctor. I would have just gone in to see my primary care doctor if I was home - but I am not. Instead I spent several hours in the ER and saw a Jr doctor fairly quickly but waited forever for the attending and finally just left since I needed to nurse Lauren and problems related to my nursing her were why I was there in the first place. Delaying nursing her was only making the problem worse. I was almost in tears out of the frustration of it all but I decided I needed to get over it. I came back and we went to a parents cocktail reception that was really nice.

We haven't figured out our weekend plans. We have been entertaining thought of going off somewhere but there are things Julia still wants to do int he city and so I think we will just stay and do those things.

Monday, October 2, 2006 6:44 PM CDT

Nathan continues to feel great. His counts are also great - holding pretty steady. The only thing wrong is that his blood pressure is a little high. They are just keeping an eye on it for now.

We spent several hours in the day hospital for not much but they don't need to see Nathan again until Thursday.

Luke and Julia arrived on Saturday and we are enjoying being together as a family. The room is a little small for 3 kids and 2 adults. Tomorrow we will head out and try to give Luke some peace to work by. He worked at the hospital this morning and in the room with the kids running around this afternoon until I took them to the playroom.

Future medical plan are as follows:

Blood work on Thursday

Next week - blood work on Mon and Thurs. Avastin on Thurs.

Following week - Mon and then probably scans at the end of the week. We will find out on Wednesday (or Tues) if Nathan has a HAMA - if he does he cannot continue in the study.

Week after - if scans are not worse and no HAMA then he will get the anibody and Avastin again.

Beyond that - we will see!

We don't know how long Luke and Julia will stay. We have to figure out who is coming out to help me next and when they will arrive.

I'll update again in a few days.

Saturday, September 30, 2006 10:01 AM CDT

We just returned from Nathan's MIBG scan. This scan was to find out if the antibodies/radiation went to NAthan's cancererous areas. The doctor came down to look and said that the scan looked almost identical to the previous MIBG scan so that is a good thing.

Friday we went to the Day hospital for blood counts. His counts are good - they are still rising. We were not at the hospital very long and so we went to Times Square and Nathan used a gift card at Toys R Us (thanks preschool teachers!). Afterwards we went to my aunt Joan's for dinner and birthday cake. We had some good Thai food and my Aunt Eleanor was also there and I hadn't seen her in a while so that was a wonderful birthday celebration.

Luke and Julia are coming this evening and Kathy will leave tomorrow.

We have the rest of today to enjoy so we are off to decide what to do with the day.

Thursday, September 28, 2006 9:19 AM CDT

Update Thursday evening

I am happy to be updated from the Ronald where we are ALL sleeping tonight.

Nathan got the Avastin without incident and then the radiation safety guy came buy and Nathan just squeaked by on the test. So - they discharged him pretty quickly and we came back and NAthan has been going at full power ever since. He finally calmed down enough to go to sleep.

So - that is the good news. Here is the not so great part. Nathan's doctor came by and asked if Nathan could stay until Tuesday. HE is nervous sending him home so quickly after a new protocol and new medicines. Then the radiation safety guy came by and said that during the 5 hours on the plane with NAthan I really should sit across the aisle for both me and Lauren. He said Nathan is fairly safe now at 3 feet but is still quite hot right on him.

Finally as I sat contemplating it all Nathan's doctor came back and told me that he is concerned that Nathan might be hospitalized for something in CO and not be able to fly back to NY for his next dose of Avastin.

So - most likely Nathan, Lauren and I will be staying in NY for at least the next month - maybe even longer.

I think Luke and Julia will come next week and Luke will work from here so we can at least all be together as planned next week.

This stinks and it is not our ideal but the reality is that there is not much treatment left and so we need to make the best of this treatment and do what is right for Nathan, medically right now even if it is hard for us as a family. If it means Luke and Julia coming out every 2 weeks instead of us flying home every 2 weeks that is what we will do.

So - Nathan is still fairly "Hot". I am trying to keep him away from Lauren and am trying to figure out what to do with things he has contaminated such as underwear and cups. I also don't know if I can let him use the bathtub and then later let Lauren use it. It is so weird dealing with radiation because it is invisible but we know it is there. I wish I had a personal geiger counter.

Ooh - I just remembered I have a friend who was a nuclear physicist in his prior life - Jim I will be emailing you to pick your brain on all this.

So - that is the update for now. We will go in for blood draws and counts tomorrow morning and hopefully get out by lunch and enjoy the rest of the day. Now that he is out of the hospital I think it is going to rain for a few days!



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


Good morning.

Nathan is doing well. He says he still has some lingering pain in his feet - but he is asking my to rub them with a smile on his face and so it isn't too bad.

When he woke up this morning he immediately gave me a birthday card he made for me with Grandma's help. He was so proud of it and kept asking me if I liked this part of it and that part.

He is more radioactive than they were expecting this morning. They will come back and test him around 2:00 and see if he can be discharged today.

The theory behind the hot antibody is that the antibody carries the radiation right to the cancer cells where the radiation gets to work killing them. We know Nathan has a lot of cancer cells and so I hope this level of radiation indicates that the radiation is still there killing all those cells. The drug he will get today made the antibody even more effective in mice anyway.

So - he may not get released today but I am fine with that. It is the treatment that matters and that it works and I believe that it is.

Like I said before - he is chipper this morning and feeling pretty good. So - we'll hang out and pass the time the best we can.

Wednesday, September 27, 2006 2:25 PM CDT

Nathan did get the antibodies today - just a little while ago. They were very painful. He was screaming and thrashing around and telling us to never give him them again. The bad pain lasted about 20 minutes and then he got into a manageable pain. Right now he is resting but still in some pain (abut an hour later). He has lots of pain medicine on board.







He may have residual pain into the evening - we'll just have to wait and see.

He is not too terribly radioactive. I have been in the room with him the whole time and no one is worried about that. I am just not supposed to cuddle with him or sleep with him.

He will be in the hospital tonight but should be able to leave sometime tomorrow after he gets the Avastin.

He was so energetic this morning. He was bouncing off the walls. Hopefully it will be that much easier for him to recover.

I will update again later.

Tuesday, September 26, 2006 1:56 PM CDT

Well - the antibodies aren't going to happen today. As they were trying to formulate them this morning they could not get the radioactive isotope to bind to the antibody. They had three dry runs prior to formulating it this morning that went just fine. It takes several hours to formulate the antibody - that is why they have to wait. Such is life.

So - he will get it tomorrow. The doctor is not sure when he will get the scan. I think it will either still be Saturday or else it will be Monday. I am hoping it is not Monday and I am also hoping they do not move the antibody until Thursday so they can have the scan on Monday.

As long as he DOES get the treatment I will not be upset. Please send all prayers and positive thoughts our way that the antibody will happen in the next day or two.

It is kind of frustrating to be in the hospital for nothing - especially since visitors under 12 are not permitted. I have had Lauren here to nurse, however.

I will update when I learn more.

Monday, September 25, 2006 5:09 PM CDT

After about 4 hours hanging out - Nathan is in his hospital room. There is a LAN connection here so I have good internet right now.

Let me back up to our weekend.

Saturday we went to visit my cousin in Brooklyn and had a wonderful time hanging out. Nathan and Lauren played with toys all day and had a blast. Nathan went up on the roof and thought that was very cool.

Kathy arrived around dinner time and we went out and got some food.

Sunday morning we hung around and had breakfast at the Ronald McDonald House. We ventured out in the afternoon for lunch and a visit to FAO Schwarz. Later they had games for the kids outside on a patio and Nathan really enjoyed that.

We didn't have to be in the hospital until noon and so we had some breakfast and just relaxed.

We spent from noon until 4:30 mostly waiting for the paperwork to be done so Nathan could be admitted into his room.

I got some good news in that Nathan will NOT have to have a urinary catheter!

So - he will have an easy night tonight and then get the antibody tomorrow.

I just saw a news "crawl" accross the TV that there are new warnings out about the Avastin. Turns out there can be neurological side effects. Whatever! We will deal with that if the time comes.

I will update again tomorrow.

Friday, September 22, 2006 8:53 PM CDT

We are safely in NY. It is a pain to get online and so I am sorry I haven't updated.

We went into the hospital this morning and when I went to check in they didn't have NAthan down to be coming in and said they had him for Monday!

I soon found it he did have to be there but I was none to pleased that happened!

They drew his blood but forgot to do blood counts and so he had to get a finger stick later and he was SO upset about that. Ugh!

His platelets were above the minimum level so he did not have to have any.

I signed all the forms and finally have a copy of the protocol. If I get a chance to write in a room that is not dark with sleeping children I will put some of the wording in here that explains what the trial is all about.

I got a call this evening that the final tests on NAthan were fine and so we are a go for Tuesday!

Here is the plan:

Nathan has to check in around noon on Monday. In order to save him a bed he has to check in the night before (crud!).

Tuesday afternoon they will infuse the antibody. He will have to have a catheter and there will be lead shields around his bed because of the radioactivity. I will have to have limited contact and even presence in the room at first. It is suggested that I do not spend the night either. I think Nathan will be OK with that.

Wednesday they will continue to monitor his radiation levels and they will also give him the Avastin (Which is another antibody - I did not know that). IT should not cause any immediate side effects but could cause bleeding problems later (rare side effect).

Hopefully he will get out Wed or Thursday and then he needs to go back on Saturday for a MIBG scan to see where the antibody has gone in his body. I imagine he will have to go in for other stuff the rest of the week that he is not inpatient.

Sunday we will come home. He will have to go back on October 11 for the next dose of Avastin. Then - in two more weeks they will rescan him, and check his HAMA. He can get another round if he is HAMA negative and his cancer has not progressed.

His counts are expected to drop somewhere around the 4 weeks mark. They are not expecting to have to use his stem cells but will be shipping them to NY. If he gets an infection they will use the stem cells.

The paperwork is being sent to our insurance company so I am hoping that somehow it will be approved. I don't know when we will know.

Non-medical stuff: Lauren refused to go to bed last night in the room - I had to ignore her until she finally gave up fussing and went to sleep. Tonight she went right down though.

Nathan is feeling great - he has been running around and skipping through the streets.

We went to dinner at a pub tonight and someone picked up our check, That really made me feel good to receive a stranger's kindness.

Julia and Luke are doing fine. They are having the first snow tonight in Colorado. Julia is starting to ask questions about children dying. Nathan is not asking those kinds of questions and so we have a delicate balance to keep to only say the right things to her.

Kathy (Luke's mom) is coming in tomorrow to help. Nathan is so excited. My aunt Joan met us at the hospital today to help out. It is a little crazy being here on my own even for a little while but all is well.

Tomorrow we plan to go visit my cousin, Laura,in Brooklyn and just have a leisurely day.

They redecorated the Ronald McDonald House and it is so much more pleasant a place to be. We are in room 302.

That's it for now - I will update again soon and fill in any gaps I have left.

Wednesday, September 20, 2006 12:40 AM CDT

Update - everything is a go. We will leave tomorrow so Nathan can be in the clinic on Friday for blood counts and possibly platelets.

He will get the antibody on Tuesday and spend 1 or 2 nights in the hospital. He will get the Avastin on Wednesday. He will then have a scan (I don't know what type) on Saturday and then we will come home.

I didn't realize he would be inpatient for this treatment. I doubt our insurance will cover it since it is a phase 1 study so this could get pretty expensive. I guess I will call and ask them, but they will want a bunch of documentation we don't yet have.

Luke and Julia will stay home and Luke's mother will be coming to NY to help out.

We will be staying at the Ronald McDonald House this time. I will put the address at the bottom of the page if anyone wants to send Nathan any mail. Remember not to send anything at all big - our suitcases will be stuffed as it is and I will have to handle the luggage by myself.

Lastly - I have to mention that today is our ninth wedding anniversary! We did managed to get out to lunch today with only the one non-speaking child.

I'll update from NY

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



We got a call from NY this morning. The doctor says he has one more call to make this morning but is expecting NAthan can start the trial on Tuesday. He would need to see Nathan on Friday, however. He said to wait for another call from him to finalize but it looks like we are going to try to get to NY tomorrow. Would have loved more notice but if this can happen as soon as Tuesday that is great news.

I just got back from NAthan's school where they are having a field day. He was so tired this morning I though I had better go in case he needed help. He had a good time.

I will update when I hear something more.

Sunday, September 17, 2006 7:32 PM CDT

We are home.

We had a quiet few days in NYC before we left. It rained alot but we did venture out in the rain some. We left early Saturday morning and had an uneventful trip home.

Today we went to church and have done some laundry and cleaning.

Tomorrow Nathan will go to school (and Julia to preschool in the afternoon).

I will bring him in for counts some time this week. His doctor called on Friday to see how things were going. It was so refreshing to talk to him after dealing with the doctors in NY. Don't get me wrong - we so appreciate the doctors in NY - but they are researchers and see so many kids and so there is just not the same level of personal care for us anyway.

We have a friend who works for the drug company and was able to find out a little information about the signatures. According to him - it was signed and delivered Thursday or Friday. So hopefully we will be on track for next week.

Wednesday, September 13, 2006 8:26 PM CDT

We finally got some more information - and it didn't take all day.

First off - the scans.

We got all the reports. The marrow is clean, and there are no tumors, but the MIBG shows definate progression and intensity.

Secondly - the plan.

Hot antibodies with Avastin is still the plan. Like I mentioned yesterday - they will not be ready Monday. I can't remember the wording but I think the doctor said it was very likely to be ready the week after. However - we have heard that kind of thing before. I do not have much faith it that happening. We will know mid-next week if the papers get signed. Luke and I suspect they are going back and forth over wording or some other legal stuff.

We got a few nuggets of information. The doctor came in and asked us if we had made a decision. No word about what they decided in their meeting - so I guess nothing has changed for them. We said we want to do the hot antibodies but were concerned with waiting 2 weeks. He acknowledged our concerns but that was it. That is where we are.

I know it is hard to comprehend - some of you have addressed this in the guestbook - but the reality is there are very few options left for Nathan and none of them involve a cure. Hot antibodies *may* give the disease a kick in the pants and give us more time with Nathan. We know MIBG therapy can also do this - but is not likely to be very effective given the large amount of disease Nathan has. So - we are taking a risk and going for the untested. There is no real sense of urgency because there just plain is nothing anyone can offer right now - so we can't beat our heads against a brick wall.

If the hot antibodes do not begin the seek after next we have more tough decisions. If he has MIBG therapy he can never do hot antibodies (due to stem cell availability). The question is how long can we do nothing? There are no answers and I suspect we will be getting less and less direction and being asked to make more decisions ourselves since the decisions being made are life and death (timing anyway) and, frankly, I think the doctors want us making those.

It is a very helpless feeling - but we cannot fall apart. We cannot get upset at the things we cannot control. We have to take it day by day and make sure we make our decision and live life such that we have as few regrets as possible. So - we will not waste our time being angry or frustrated. I don't mean this to say that any of you should not be expressing your outrage! I am just explaining why you aren't hearing any on my part.

Ok - back to information. So - it is a little strange to be making a decision to do a trial that I know so little about. Liek I said before - I feel like it is what we want to do given our few options and it is obvious that the doctor in charge does not want and/or have time to explain the details to us. Therefor, we do not want to push him or rock the boat so we are just going along.

What we do know. It is a radiolabled antibody. It will be given in one day. The next day he will get Aastin, that has been used in adults and causes the blood supplies to tumors to die. 5 days later he will get a scan (he didn't say what type. Then, 14 days after the first dose of the Avastin he will get another dose. Then again in 14 days and also the antibody again. I believe this goes on for 4 cycles *IF* Nathan doesn't get a HAMA.

The antibody is made from mouse "stuff". His body can mount a reaction to the mouse part and then the antibody will be innefective. They usually give high dose cytoxan (chemo) to prevent this. Nathan can not tolerate that right now so there is a good chance he will HAMA after one round. If so, the trial is over and on to MIBG therapy.

So - along with not knowing very much about the trial - we were also told that Nathan will be the very first patient to get it. Several of my questions were met with the answer "I don't know". The hot antibody part was done in a different formulation many years ago to very sick patients - so it was hard for the doctor to answer question about its side effects. I think the avastin has not been used on children and I don't know what its side effects were on adults.

If any NB folks are reading this and know more than I do about this - please shoot me an email.

Since there is nothing going on for at least a week we have decided to come home. Nathan can go to school next week and we can be reunited with Julia. They will call us and tell us when to come back. We can't get home for a reasonable fare until Saturday so that is the current plan.

I have written alot, but I feel kind of muddled so I hope this all makes some sense.

Tuesday, September 12, 2006 8:21 PM CDT

Well - we went to the hospital at noon today and spent three hours in the playroom. I finally asked about seeing the doctor again and he came out and said it was late and wondered what we wanted. He was on the way to a meeting where they were going to discuss Nathan's case. So he said to come back tomorrow. He did say that the "signature" was now not going to happen until next week.

So - we will see what they suggest. I don't think we are going to like what they have to say.

We salvaged our day by heading out to Times Square for the late afternoon.

Monday, September 11, 2006 8:27 PM CDT

Sorry for the lack of updates.

The doctor had told us he would call either Friday night or Saturday to tell us if we should go ahead and start Nathan on some pre-medications on Sunday that are neccessary for both trials he might do. I emailed him on Saturday afternoon and finally heard on Sunday morning from him to go ahead and start the medications. He didn't answer about when we should bring Nathan back in so today we emailed his regular doctor here and we will go in tomorrow. We don't expect any new news, but we will ask some more questions.

On Saturday we went to the zoo with my cousin and her son. Sunday we took the train to Rye, NY where there is an old-time amusement park. Our friends invited us to join them there for a company family fun day. These are the friends whose son, Garrett, Nathan had antibodies with. We spent a few weekends with them during that time. Nathan had a blast riding all the rides. Luke and I got to ride the big wooden roller coaster together. I won Nathan a stuffed animal husky. He has been sleeping with it in his arms - very sweet.

Today Luke worked and Nathan, Lauren and I did some laundry. I had to battle with Nathan do to schoolwork. I hadn't asked him to do any since last Tuesday and so it was a big fight. From now on he will be doing some every school day even if it is only for a few minutes.

Nathan is feeling good. Like I just mentioned - his attitude is not so great. He has been giving me a hard time.

Julia is doing fine in Colorado Springs. It is hard being away from her though.

I will update again tomorrow if there is anything to update.

Friday, September 8, 2006 8:50 PM CDT

Scans are done and we have preliminary results. It appears Nathan's cacner is about the same as it was when he relapsed in June. It was described as "impressive" by the doctor - and not in a good way.

I am too tired to go into all the details of the options tonight - I will do that this weekend. Basically the first option of treatment is a trial which, once again, is not open yet. They are waiting on a "signature" and expect it to start a week from Monday. I have no idea how realistic that is or not. It is a radioactve version of antibodies with another drug that kills the blood supply of tumors.

Nathan feels good. He doesn't look great - he is very puffy - who knows why. He had a long walk around central park this afternoon despite it all.

So - I will update soon about the other options for Nathan. They, unfortunately, include doing nothing at all. We are a long ways away from feeling that stopping treatment is the right thing. We know that he doesn't respond to chemo anymore but we are hoping there are still some things that can halt the progression of his cancer.

Thursday, September 7, 2006 8:50 PM CDT

Hello,

We arrived in New York yesterday without a problem. The flight went fine and we got settled in at a decent hour.

We headed to the hospital very early this morning and Nathan did a great job drinking his oral contrast for his CT scan. Unfortunately the apple juice we mixed it with was very cold and so he was very cold for a long time afterwards.

He got his port accessed, a quicky exam and then Luke took him for his CT. He did great with that - came back upstairs and got his bone marrows drawn.

He woke up and wanted food. He was upset it was still breakfast food. Luke and I couldn't get over the fact that he had all that done before 9:30 - unheard of! Nathan got over it and ate tons of food. He played in the playroom and then we got lunch and at that point I headed back to the apartment with Lauren and Luke and Nathan plaed in the park and then waited for over an hour for the five minute MIBG injection.

We all relaxed after that and had some dinner, a visit with my aunt and now the kids are sleeping.

Nathan's blood counts were good today - he definately is bouncing back. His LDH was 237 and the high end of normal is 200. This is something other institutions rely heavily on to determine disease burden, but not one we ever follow for Nathan. However, it seems to me to go along with the urine tests that are also slightly elevated. I haven't a clue what his tests will show. I go back and forth from feeling positive to feeling hopeless. It doesn't help that we have had so much bad news lately with several of our friends going on hospice/learning there is no more to be done. I am not ready for that. Nathan was complaining about headaches today. So - of course my mind went to worrying if he has a tumor in his head. That we should now from the CT today. I cannot decide if I will go with Nathan for his MIBG scan. If I do - I will see in the screen if things look VERY BAD. Or at least my interpretation. If things are VERY BAD - do I even want to worry about it until it is official? Shouldn't I just enjoy the weekend with a boy who is running and jumping around? If Luke goes in - will I go crazy not having seen what the screen will show?

We will see a doctor tomorrow and probably get the CT results but we would have to come back in the late afternoon if we are hoping for MIBG results. We may just ask for an email. I don't know - it all just makes me feel sick to my stomach.

Hopefully tomorrow scan will go smoothly and we will have time to go off and do something fun for Nathan.

I will update when I know anything.

p.s. There are new pictures in our family web page.

Tuesday, September 5, 2006 11:23 PM CDT

Quick update - we need to get to bed.

Nathan's platelets are a little low (43,000) but we did not transfuse. His ANC is back down to 700 off the neupogen but his doctor was perfectly happy with that.

Lauren is teething and is absolutely miserable. It is not going to be a fun airplane ride.....

I'l update from NY.

Sunday, September 3, 2006 8:00 AM CDT

Sorry for the lack of updates - out internet has been down.

Nathan had another good day at school on Friday. Now I am sad he will miss it for a while. It was so good to see him go.

As it ended up we could not get a private flight to NY and so we are flying commercial on Wednesday. We are just hoping there aren't too many sickies on board with us. The only row with 3 seats together was the last row - but maybe that is good for not getting coughed on.

We are getting ready to go to church for the first time as a family since sometime in July - so I need to keep this short. We (the choir) are singing Jesu, Joy of Man's Desiring this morning accompanied by organ - I am so looking forward to that!

Nathan will get his counts checked on Tuesday before we go - I will update again then.

Thursday, August 31, 2006 8:29 PM CDT

It was another good day for Nathan.

He did his homework this morning and took the bus to school. I didn't hear anything from him all day and went and got him at 2:30.

He got his counts checked. His ANC was exactly 3000 - which was the magic number for stopping neupogen. His platelets were 94,000. They are high from his transfusion on Tuesday and so we have no clue where they are headed.

We got the results from his urine test (cancer markers). Both numbers were just a tad higher than the upper normal range. They were a little bit lower than at the time of his relapse. So - it was a relief to see that since that most likely means the cancer has not progressed significantly.

We may be able to get a flight with Flight of Hope Monday afternoon. If not we will leave on Wednesday. Nathan will need his counts checked on Tuesday wherever we end up being.

So - Nathan is off to school again tomorrow all day - what a blessing!

Wednesday, August 30, 2006 9:43 PM CDT

Nathan had a good day! He got on the bus this morning and I met him at school. I got him settled in and talked to his teacher for a few minutes and then did some paperwork and left.

He stayed all day and took the bus home. He even participated in PE. He definately was tired afterwards and the thught of homework did him in. Luke gave him his neupogen and I took out his port needle. Since he was needle free he wanted to play in the sprinklers. So - he had a blast with that and obviously had enough energy.

He was happy to see the kids he knew from Kindergarten and his teacher said he was smiling and happy all day. He was so glad to have school lunch because he is a kid who loves a hot meal.

I will send him tomorrow and pick him up at 2:30 to go get his counts checked.

We still don't have firm travel plans but if we can't get a corporate jet I found some very cheap one-way tickets on Wednesday.

I will update again tomorrow with his counts.

Tuesday, August 29, 2006 10:05 PM CDT

Today was hectic but good.

First - I did get a call this morning that Nathan's scans are scheduled in NY next Thursday and Friday.

Nathan had tutoring this morning and then we were out the door to get his counts checked. His platelets had gone down by 2000 but the doctors were busy and we had to go and so we decided to come back after the bone scan injection to see what they decided. We went over and Nathan got the bone scan injection. We got some lunch and headed back to the clinic where they had platelets waiting for Nathan. He got the platelets and some neupogen and we were off again to get the bone scan. It took a little long because Nathan's hips were a little twisted and they had to do an extra picture of them straight. We got home a little after 4:00.

I had an email from his teacher that the couselor had been in to talk to the kids about Nathan and also about being extra careful about germs. So - guess who is getting on the school bus tomorrow and going to first grade?? I am very excited - oh yeah, so is Nathan.

So - I will meet him over at the school (he wanted to take the bus) and get him settled and just see how long he lasts.

We are still working on flights to NY and our plans for Julia.

Nathan will go get his counts checked Thursday afternoon. I plan on sending him to school the rest of the week.

The other good thing is that my car is home and fixed for around $200!

So - I will update tomorrow on how Nathan did at school.

Monday, August 28, 2006 9:13 PM CDT

Nathan's counts continue to climb (except for platelets). His immunity is in the normal range and he is still on the medicine to stimulate his white cells until they reach ahigher level since they will fall when he stops it. His platelets are quite low - which we expected.

They got Nathan's urine to test for the cancer markers. That one usually takes a week or so. He also had an echocardiogram and EKG.

Tomorrow he has a bone scan. That involves an injection at 11:45 and a scan at 3:30. He will go to the clinic to check his platelets at 10:30. If they have dropped from today we will go back to the clinic between the injection and scan and he will get platelets.

We got an email from Nathan's doctor in New York and he said he would schedule scans for next week. We did not receive any schedule yet and so we have not started planning how and when we will get there. I will call in the morning and see if they at least have some of the tests scheduled so I can get an idea and start the travel planning. Since Monday is a holiday travelling could be tricky.

On the way home from the heart tests my car broke down. This is not our primary vehicle and it is in fact my first car and is quite old. It probably won't be worth fixing and so we will probably be down to one car for the near future.

I am hoping to be able to send Nathan to school on Wednesday. I don't know if that will be enough notice for his teacher - I hope so. I will be so happy if that works out.

So - things are about to get very stressful around here with planning for this trip. I will update what the plan is when we have one.

Friday, August 25, 2006 10:35 AM CDT

Nathan's counts are up even more! His ANC is 300 (no longer zero) and having just had transfusions on Tuesday the other counts are fine. Platelets are almost certainly still going down. It is great to see a good white count though.

His sores on his legs are improving. Now that he has some white blood cells his doctor has put him on an oral antibiotic instead of the IV ones. So - he is just on the neupogen still to keep that white count coming up.

Now that his counts are coming up he will be doing some minor tests here in Colorado Springs before he goes to NY. They are currently scheduling them and will hopefully have them done early to mid next week.

Nathan's local doctor will be emailing his NY doctor and so we may hear soon when they want Nathan to come for scans. It may be as soon as the week after next. I am not sure I am ready....

Nathan another tutoring session today. It is working out pretty well so far. It is a little bit of a challenge to keep a quiet work environment for him with a baby in the house.

Nathan goes back in on Monday for counts. Hopefully his platelets will stay high enough not to cause problems until the weekend was over.

Friday, August 25, 2006 10:25 AM CDT

Susan wrote a real update last night. Right as she was finishing our now flaky cable modem connection crashed. It isn't up this morning. I'm working from a local coffee shop, but with access, so I thought I would right a quick update. Susan can provide the details when she is back online.

Nathan had an appointment yesterday and his counts are coming up. This is really great news. We really didn't want him immunodepressed for too long and it seems his stem cells are doing their job. His ANC was up from 0 to 300 since last check (we are looking forward to it getting up above the magic 1000 number) and he did not need red blood or platelets. We can't know for sure if his hemoglobin and platelets have stabilized. He could still be transfusion dependent on those for awhile, but we do know that the rate at which they were falling has slowed at the very least. Good news on the counts. And he gets to go from the two IV antibiotics he has been on to oral antibiotics.

We will likely begin doing some scans/tests to assess his condition here in the Springs next week. Hopefully we will be in New York to complete the assessment and go over a plan sometime in the next couple of weeks.

Wednesday, August 23, 2006 10:05 PM CDT

I am sorry I didn't post yesterday - things have ben very busy around here.

The transfusions went well. We got there at 8:40 and between registering (ugh!) and waiting for Nathan's pre-meds to arrive on the floor he didn't get started with his platelets until 10:30. Fortunately, things went quickly after that and we left the hospital at 3:00. He had no hives at all this time. Thank goodness my parents are here right now. We have kept them hopping between watching the kids, taking Julia to and from preschool and bringing Lauren to me at the hospital/clinic when she needs to nurse.

Thursday early evening I went over the Nathan's school for the back to school night. The principal spoke and then we went to the classroom. His teacher showed me Nathan's table and it had his name on it. I started tearing up and had to go compose myself. It was so sad to see his classroom and have him unable to be a part of it. Most parents take sending their kids off to school for granted and this is one time where I was feeling very envious of the other parents.

It was good to meet his teacher and see his room. I talked with her briefly afterwards and we arranged to meet this afternoon since it was a individual testing day and there was no regualr school. I decided it would be good for Nathan to meet her and see his classroom without the other kids there the first time. We did go do that this afternoon and it went well. I hope it eases his anxiety when he finally goes there. I am hoping to bring him in for an hour or so at the end of next week but I will just need to see what his counts are doing.

I talked to the principal and a friend showed me around and introduced me to the counselor as well and they just want a little explaination to the class about Nathan before he goes in. Another NB mom sent me a link to a coloring book that is suited just for this situation and so I think they will use that (thanks Jennifer!).

I came home and nursed Lauren and then went off to play games with some friends. I was up way too late but it was really good to finally spend some time among friends.

This morning, Nathan's tutor came and that went really well again. She stayed for an hour and they got everything done. He gets an IV antibiotic at 6:30 am and it is really a blessing in disguise because it wakes him up enough that he then decides to get up on his own and he had plenty of playtime before his tutor came and so there were no fits.

On the medical front - Nathan's sores on his legs are a little better but stil are quite red and inflamed. I am unsure what his doctor will want to do about that. He is feeling pretty good and has been playing as normal. He goes to the clinic tomorrow for blood counts.

As for the other kids - just to update on them from time to time... Lauren is about to cut her top front teeth and is in a lot of pain. She is normally so sweet-natured and I feel so sorry for her because it is so obvious that she hurts. Hopefully they will break through very soon. She is very mobile and loves climbing up the stairs. Julia started preschool on Monday and seems to be enjoying it. She has the same teachers and classroom and many of the same children as last year and so it is an easy transition for her. She goes four afternoons a week. She is so funny. At dinner we were talking about friends who adopted a baby from China. Julia said that it was a very long way to China and it must take a really long time to drive there! Nathan chimed in that he bet they had to change planes alot to get to China. Guess you can tell who is our very literal traveler!

I won't promise an update tomorrow night but definately by Friday.

Thanks for checking in with us.

Monday, August 21, 2006 9:26 PM CDT

Today started out a little rough. I had to wake Nathan up at 8:00 for his tutor who was coming at 9:00. He threw a big fit and was so mad about having school at home. Mostly - I think the problem was that I had woken him up.

He did really well with the tutor and afterwards told me how much fun he had.

Nathan's white count is up to .5 but he still has 0 immunity. He needs red blood and platelets tomorrow. His clinic has stopped giving red blood transfusions in the clinic (because of $$$$) and so we have to go to the hospital to get it. That stinks because of how long it takes. We are going in at 9:00 and, on hospital time - I am guessing he will be done around 4:30 ot 5:00.

Nathan will miss his tutoring for tomorrow but is set up for Wednesday and Thursday. Tomorrow they have back to school night at his school at 6:00. I am hoping to make it home in time.

Nathan got another case of hives late this afternoon. It is still a bit of a mystery why he is getting them. I think the medicine made him sleepy so he went right to bed after dinner. He also has an infected sore on his leg. They think it is either staph or strep. He has been started on an additional antibiotic to fight that. It is a little scary to think he has this infection on his skin - I hope it doesn't get into his bloodstream.

We are really hoping tosee some signs of immunity soon. Once he shows some signs we wil start planning our trip to NY and some tests here as well. He has been having some hip pain so I am a little concerned about that.

So - that's the scoop - I am hoping for some days off of anything eventful to write about soon.

Sunday, August 20, 2006 8:29 AM CDT

Update: Monday morning


Sorry for not posting again last night. I totally forgot. Nathan is feeling well. He has had an off and on low fever but that is it. No more hives either. He was up all night complaining about being sweaty. So - we are all tired today.

I will do a new post tonight about his appointmetn he has this afternoon.


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

Things not as ueventful as we would like around here.

On Friday, Nathan got platelets. He broke out in hives (which he does from time to time with them). They also caused a fever. He seemed find after that and was fine until yesterday afternoon when he broke out in a whole lot of hives and continued having them into the night. He also has a low fever so he does not feel very well. He is currently still sleeping and feels a bit warm so we will see what his temperatures do today. He had been feeling so good so this is a bit disappointing.

We are crossing our fingers that he does not have to go into the hospital.

I will update again tonight.

Thursday, August 17, 2006 9:57 PM CDT

Good news! Nathan has the chickenpox antibodies in his blood - which means he should be immune. This is a huge relief.

He had a good appointment today. His platelets were 53,000 which was higher than his doctor and I expected. We assume they are still going down (just not as fast now) and so he will get some platelets tomorrow to hopefully avoid another weekend transfusion. His hemoglobin was also pretty good at 10.3 (anemic but not transfusion level). His white count went from .2 to .3 but that isn't very meaningful since his ANC (immunity) is still zero. His counts on Monday will tell us more.

I talked to the school nurse and tutor today and left a message for his teacher. I am going to try to take him into school in the next week or two just to meet everyone and see his class. The school nurse wants me to make sure I let the principal know because she thinks the principal may want to warn the parents of his classmates in case they come home upset. Hmmm. I had already intended to ask his teacher if she wanted me to explain anything to his class so we will she what she wants to do. I called the tutoring office and wasn't too impressed. The woman in charge said she had left three messages and had not heard back from the tutor. The tutor then called me but during the conversation I made the comment of Nathan being my oldest and so not really knowing what they learn in first grade and se said her kids were all older and she didn't remember either. What? I am going to call the office back and ask them to tell me what her experience is. He definately needs a tutor with experience in elementary education.

I want to thank everyone who got in touch with me today. I sincerely hope I didn't make anyone feel guily - that was not my intention - I have just been missing contact with the outside world and I have not been good about making the effort, myself, with everything going on lately. I feel a little sheepish about it all - I am not usually the type of person who asks for attention! So - thanks again.

So - Nathan will get platelets tomorrow and we will hoepfully have an uneventful weekend! Nathan's doctor has kept him on the antibiotic becuse last time the minute he took him off and he was still neutropenic his fevers came back.

I'll update again this weekend.

Wednesday, August 16, 2006 10:52 PM CDT

We have had a good two days at home.

Nathan is feeling so much better. Yesterday he and Julia played outside for along time and alo played lots of other games inside. He is still having intermittant nausea. He is also having trouble sleeping. He is on TPN at a pretty high rate which is causing accidents and he is also "afraid" at night. Last night I had him come sit with me on the couch before I went to bed and then he stayed down for a while. I am terrible at getting back to sleep and so after a bed change at 3:00 am last night I was up for several hours thinking about the shingles and what if I give Nathan the chicken pox. It could very likely be deadly to him right now and so I am very worried.

My parents arrived today. The kids were so excited to have them. After dinner Nathan went out and rode his bike and played with a rocket for a very long time. Unfortunately he came back in and threw up - I think he just overdid it. IT was a good excuse to give him some nausea medicine which will also make him sleep!

He goes into the clinic tomorrow for counts. I would expect they are still rock bottom. He will probably need platelets either tomorrow or Friday. He hasn't had any nosebleeds lately though.

I am still feeling kind of crummy but I should start feeling better soon. Emotionally this has been a difficult time. I feel so isolated. I can't go anywhere and I can't see my friends since they all have kids and Nathan can't be around other kids. I am not sure if I have given off vibes that are keeping people from reaching out or if things are so bad around here that they are scared off. Either way - If you are reading this and have been unsure if you should "bother" us/me - please do! We may not be able to get together but I'd love to catch up over the phone at least.

I will update again tomorrow.

Monday, August 14, 2006 10:54 PM CDT

Well - today was the 13th straight day of either hospital or clinic and tomorrow (knocking on wood) we should finally get a day off!

Nathan slept in pretty late this morning and then we went in for counts. He needed platelets today already. He also got a few other meds.

This afternoon Nathan really perked up. Whwn we got home he watched a movie and after it was over he went into the kitchen and proceeded to run and land on his knees - skidding along on his track pants. He did this until he got a bloody nose and we had to stop him. He was having so much fun. He also was humming to himself while he played this afternoon. It is so good to see him feeling better and acting more like himself. He is still throwing up about once a day - around late morning. His appetite is really good under the circumstances. He ate almost a normal amount of food for dinner tonight. His weight had dropped a few pound but he was back up a few today.

Nathan doesn't have to go back in until Thursday - I have my doubts about making it that long - seems like one thing or another will crop up - but if it does happen that will be nice!

Sunday, August 13, 2006 5:05 PM CDT

Well - it was a quick hospital stay and Nathan is feeling well.

His fever went away as soon as we got there - which is often the case for some reason. Actually he still had a low fever (for him) since his normal temp is 97 and he was 99. His platelets had dropped from 57 to 17 in less than 24 hours. He got platelets and antibiotics and they ran his TPN.

Yesterday morning I noticed I had a rash on my lower back. I had also had unexplained back pain for a few days. I decided to look it up online late yesterday afternoon and was dismayed to see that the rash looked very much like shingles. I freaked out and caught a cab over to urgent care where I waited FOREVER and saw a none too helpful doctor who tried to tell me it might be herpes even though I have never had so much as a cold sore (or the other kind) in my life. She said it was that or shingles. She wasn't able to explain to me the risks to Nathan and so I got Lauren and went home and did some research myself. I am now certain it is shingles based on its location and symptoms. Nathan's doctor said I could be around him as long as I cover the area and wash my hands. That was a stress we did not need right now and also it is starting to hurt more. I got on medication late last night and so hopefully it will remain a mild case.

We all went back over this morning and Nathan was eating breakfast and feeling good. He needed another red blood transfusion and he got some other meds and they let him go home. He will go back to the clinic tomorrow morning.

My parents are coming out and will stay for about 3 weeks and lend us a hand. Watch - everything will calm down when we actually have the extra help!!

Saturday, August 12, 2006 11:54 AM CDT

Well - I took a day off and now I have more activity to write about.

Yesterday Nathan woke up feeling really good. He played and was pretty happy. He got a nosebleed in the morning though. We went to the clinic for counts and were surprised to find that he didn't need platelets yet (57,000). He got hooked up to his TPN got some nuepogen (for his white count) and we were off on our way. He did throw up on the way to the clinic.

Nathan had a few more minor nosebleeds and then he went to bed and had some really big nosebleeds where it was just pouring down his throat and he was having to spit blood out. We talked to his doctor and decided if it happened again we would take him in. He had one more minor nosebleed and was fine the rest of the night.

This morning he had a minor nosebleed when he got up but then decided to go back to bed. I took his temperature and he has a fever so we are going to the hospital. He will stay overnight tonight but after they observe him and do blood cultures, platelets and antibiotics they may send him home tomorrow - we'll just have to see what his fevers do.

Luke's brother is in town for the day so we will probably all spend some time in the hospital so Nathan gets to see his uncle before he leaves tomorrow.

So - I will update again later.

Thursday, August 10, 2006 8:38 PM CDT

Finally - a day that went better than expected!

Nathan woke up feeling good and having not thrown up or wet the bed from his fluids.

We left for Denver around 8:45 and Nathan and Lauren both quickly fell asleep and stayed that way until we were almost at the hospital.

We got checked in and in a bed fairly fast for a hospital setting. Jackie entertained Lauren in various parts of the hospital while I sat in the very small room with Nathan. The hydrated him, premedicated him and then I spoke with the head of Bone Marrow Transplant about Nathan. They then unfroze his stem cells and hooked him up and gave them to him in about an hour. Since I had Nathan's IV pump with us and still several hours of saline in it he let us leave after about 45 minutes more of hydration!

Nathan tolerated the stem cells just fine and was very chatty and animated throuhout the day. He ate and didn't get sick and seemed to feel quite well. As we were getting ready to leave two former Colorado Avalanche players stopped in and talked to Nathan and gave him a signed hockey puck. He thought that was very cool!

We packed up and came home - arriving around 5:00. Nathan started feeling bad shortly thereafter and didn't eat dinner. We bathed him and put him to bed. He was nauseous but did not throw up.

Stem cells have a very smelly preservative. I think it smells like garlicky creamed corn. Nathan and also the van and the house now smell like this. It is pretty yucky! Also - the stem cells have broken red blood cells in them and he is peeing those out - so his pee is red. When the nurse told me this would happen I told her perhaps he would pee purple from the combo with the blue medicine he had.

Nathan's counts were all lower today. In fact, there is a good chance that he will get platelets tomorrow so he can make it through the weekend. No way to we want to go to the hospital for them - Luke and Nathan didn't get home until 10:30 last night from the red blood transfusion. 6 hours for a 2 hour infusion.

Nathan is also going to be put on TPN. It is IV nutrition. He is eating and drinking are down and he is so skinny to begin with that his doctor wants to make sure he doesn't lose much weight. I think they will be running it for only 12 hours at night and not 24 as they have done in the past. I hope so... he has been hooked up to an IV 24 hours a day since last Wednesday night and I know he would love to be untethered.

Well - I am exhausted and I feel like I am missing something but I will update again tomorrow.

Wednesday, August 9, 2006 9:43 PM CDT

Another day not like I expected - but not so bad either.

Nathan woke up feeling so much better this morning. He was pretty chipper and after much convincing was walking well. He settled down on the couch and after a few hours I had to convince him that it was OK to try to get up and see how he felt. He was concerned that sitting up would make him throw up. I got out his GEOTRAX train set and he got right off the couch to help me. He and Julia got in some good playtime the rest of the morning. Around lunch he started throwing up some - but in between he kept playing and so I didn't give him any of the anti-nausea medicine which would have made him go to sleep. He was still throwing up when it was time to go to the clinic but he wanted a turkey,cheese and mayo sandwich anyway - and he did eat it!

At the clinic we found that his counts had dropped. His ANC (immunity) was 600. That is neutropenic but it is going to get to zero soon. His platelets were still pretty high for him at 117,000 (transfuse around 50,000). His hemoglobin was very low at 6.4. This was a problem since he is going to be in Denver all day tomorrow and that is too low to wait until Friday to transfuse. So - around 3:30 we headed over to the hospital for a blood transfusion. They finally got started at 6:30. Got to LOVE how slow hospitals are! Luke met us at 5:15 and Lauren and I went home. Luke and Nathan are still there. I expect them home around 10:00. Meanwhile I am getting ready for the stem cell infusion tomorrow. I am most stressed about the evening traffic - not even the stem cells. It really shouldn't be a big deal. I am just hoping he has no blood pressure trouble this time and that his nausea can be controlled. I am going to give him the anti-nausea medicine right before we go in the morning and that will hopefully keep him from throwing up the whole way there and also let him just sleep. I am imagining what we are going to do with a sloshing-full throw up bin in the van without having to stop every 20 minutes. I guess if we are late - we are late. They can't really blame me!

Hopefully I will be home at a decent hour and can update tomrorow night. Otherwise I might have Luke just post a quick message.

Tuesday, August 8, 2006 7:53 PM CDT

Well - today did not go as well as I had hoped. Nathan got up in the morning and went to the bathroom without calling for us and fell down and hit his head. As of tonight he is still not walking with much stability. He continued to throw up more and more as the day went on. Every time he tried to sit up it made him feel sick. I sat down to ask him if he wanted to go the clinic when the phone rang and it was his doctor calling to find out how he was doing. He thought we should bring Nathan in. Nathan was very sad about that because he did not want to go to the clinic. So much for our day off. I am glad we went because he only got sicker and sicker. They gave him some more anti-nausea medicine and he went to sleep. His doctor didn't feel there was need for more of the blue medicine since he is mentally fine but I am still concerned about the physical symptoms. I will ask about it tomorrow when he goes in for blood counts.

Nathan fell asleep for most of the clinic visit and then I brought him home and put him into bed where he slept several more hours. He woke up as the rest of us were finishing dinner and is on my bed watching TV. He is laughing and commenting at the TV and so he seems to be feeling alot better. He did fall trying to walk into the bedroom though.

The anti-nausea medicine they gave him today makes him sleepy and so I am hoping we do not have to use it much tomorrow. It is so hard to see him so out of it and not to see "Nathan".

I'll update again tomorrow after we get his counts.

p.s. I have uploaded pictures for July - see them at our family web page or in link above.

Monday, August 7, 2006 7:37 PM CDT

Chemo is done!!!

Today went pretty well. It was good to be back in the clinic and shave several hours off the time it took in the hospital. This time we knew what to expect and Nathan does have the same symptoms as yesterday. He doesn't seem to be recovering as quickly tonight though. I had to feed him his dinner and he is just staring at the TV and not really saying anything. It is really hard to see him being so unlike his normal self. This morning he was back to normal so I am hoping for the same tomorrow morning. His nausea was about the same today. He threw up about 4 or 5 times throughout the day.

He is still on IV fluids and will continue to be until at least Thursday since it is good for him to be well-hydrated for his stem cell infusion. Speaking of Thursday - I am needing someone to be with Nathan, Lauren and I in the hospital. I am just not sure how much help Nathan will need and I have to have Lauren with me to nurse her - so if there is anyone out there who can be with us in Denver all day (without your own kids) and help take care of Lauren - please e-mail me at the link below - or call me if you know my number. *** UPDATE - I have already had a response and my neighbor will be going up with me - Thanks Jackie!****

Nathan will go to the clinic on Wednesday to check his counts and he will also go back on Friday for some medications. So - we get a day off tomorrow at least!

Wednesday night they have a ice cream social at his school and I think I will go alone and at least get to meet his teacher. If he is up to it he could go, wearing a mask, but we will see.

I will post a short update tomorrow on how Nathan is doing.

Sunday, August 6, 2006 8:56 PM CDT

Today was a bit rougher. We are very glad tomorrow is the last day of this chemo. Sleep was rough last night. Nathan woke up to vomit once and had several pee accidents. With the fluids we are pumping into him designed exactly to make him pee a lot and clear his kidney and him being totally exhausted, he tends to have accidents. I think we were also up for a Julia nose bleed and maybe even something else related to Julia or Lauren. I can't really remember.

Nathan and I left this morning and stopped at a local drive-thru for breakfast burrittos. Nathan threw up right after I ordered and before we got our food. I asked him if he still wanted to eat, and the answer was a resounding yes. We learned long ago that if he throws up and it is chemo related, we may as well just go ahead and let him eat because you never know if it will keep coming or be better.

We got settled into the hospital and he was doing really well. We were playing with toys and he was actually enjoying himself. Mid to late morning the side effects from his ifosfamide hit. I'm going to steal a quote from something Susan wrote for a different forum, "Ifosfamide-related central nervous system toxicity is characterized by metabolic encephalopathy of varying severity. Symptoms have been reported in 5-30% of all patients treated with ifosfamide." It started with Nathan being overly tired and not quite as lucid and responsive as usual. Things got really odd when I had him stand up to pee. He was standing there and his legs just buckled. He didn't fall. I still had ahold of him from getting him down from the bed, but he clearly couldn't stand. That continued and when his food came it became clear that he had the same problem with his arms. He couldn't hold his fork. He tried to take a bite and about half way to his mouth his whole arm just jerked. The doctor was pretty confident that this was neuro-toxicity from the ifosfamide. For me the hard part isn't so much the physical, but it is when he is so out of it. I fed him and he was clearly just not right. He dropped a forkful of spaghetti noodles on his bare chest and said, "Oops. I just dropped food on my shirt". He would ask me for his roll and get mad when I didn't feed him apple. There were several other little odd things. It is really difficult caring for someone that you know so well when they just aren't themselves. While it was an extremely tiring day, it could have been much worse. Sometimes the neuro-toxicity can be pretty vivid hallucinations and sometimes people can freak out about the loss of lucidity and the motor function issues. Nathan didn't once get upset or seem to be afraid about what was going on. He did get mad a couple of times when I made him answer my questions when I was trying to judge just how aware he was, but overall he just acted odd, not afraid or angry. We have seen him much more difficult to handle on steroid or narcotic induced rages. The doctor said we could stay at the hospital or come home and that there wasn't really much danger to Nathan. We just have to wait for it to wear off. He became more alert and was able to feed himself shakily a few bites of dinner. He did just fall down once when walking in the family room, so we will watch him pretty closely tonight.

Susan spoke to the doctor. He indicated that we may not want to do the last dose of the chemo agent tomorrow. Susan grilled him pretty hard on why we wouldn't and it basically boiled down to a tradeoff between getting the dose in him and the emotional stress that the neuro-toxicity puts on Nathan. They aren't too concerned about long-term neuro effects. Since he really handled things pretty well today, we are pretty sure we will want to go ahead and do the dose tomorrow. The side effects could be worse, but even if they are it is just one day and we will be done with it.

It amazes me the poisons that have to be pump into cancer patients in order to beat at this disease. It doesn't seem quite real sometimes. These aren't medicines. These are toxins.

One more day of this. Please pray for an easy day without too many neurological side effects.

Saturday, August 5, 2006 9:00 PM CDT

Nathan had a good day. Susan underestimated the time at the hospital. We were there longer then the clinic days had been running with one less chemo agent. We were at the hospital from 7:45am to 4:00pm. Nathan handled the chemo well. He vomited once, but I don't think it was classic chemo related nausea. He felt fine before and after the episode. He took a pretty decent nap. The poor guy was so knocked out that he peed a couple of times while he was sleeping. It was hard to let him sleep there like that, but I thought he needed the rest if he was out that soundly. Overall he was really pretty cheery. We played with cars, we watched some of Shark Week on the Discovery Channel, and we got through about half of Empire Strikes Back. I could do with more of Shark Week and Star Wars and less of playing with cars and trucks, but as long as he is in good spirits I'll do what he wants.

Tonight he got a second wind after dinner. He decided he didn't want a book before bed so he could have more time to play with Julia.

He has one more outpatient day at the hospital tomorrow and then a final day of chemo in the clinic on Monday.

Friday, August 4, 2006 9:43 PM CDT

Today was much better than yesterday. Nathan didn't get sick at all and also didn't get benedryl so did not act crazy. He did get very tired of being at the clinic and at the end of our stay he and I got into a big fight over him messing with Lauren and I asked him to stop doing what he was doing to her and he willfully disobeyed and kept at it and so I removed his hand from her and this went on a few times until he started sobbing about how he was just trying to have some fun. He then got into bed and went to sleep. Unfortunately we had to leave in about 20 minutes and so he didn't sleep long. This was followed by a pee accident in the mens room downstairs in the office building. Luckily there were no other men in the bathroom because I had to go help him. I called the clinic upstairs and they brought down some spare clothes for him.

Luke and Nathan will go to the hospital at 8:00. He is actually done with one of the chemo agents that takes two hours and so in the clinic it would only take about 3 hours to do the chemo but since it is the hospital I am guessing it will take about 6 hours. We'll see.

I plan on taking Lauren and Julia school clothes shopping. I am also seeing a doctor about my eyes which will not stop itching. It is hard enough coping will all of this but having itchy eyes all day makes everything much worse and makes me much crabbier. It will be good to have a some time off of the chemo routine. Luke is happy to be able to be the one doing the chemo thing since it is on the weekend.

Nathan will be getting his stem cells back next Thursday at 11:00 am. It will be like a blood transfusion but it may make him sick from the preservative they put in them. Also, he had blood pressure problems the last time he got stem cells so I am hoping that was a fluke. I have a feeling we will be fighting rush hour traffic to get home. Oh well.

So - that is the round up for today. I almost didn't get this one in since I fell asleep while nursing Lauren at 7:30! I think I will go to bed soon....

Thursday, August 3, 2006 10:26 PM CDT

Day one is behind us.

We were obviously relieved that Nathan could have the chemo today. His kidney function isn't stellar but it is in the low end of normal.

It was hard to watch him so visibly feel sicker and sicker as the hours passed. One of the chemo agents he has never had before and it can cause "neuro-toxicity". Basically he can hallucinate or freak out in some nature. They gave him something to help prevent it and it was dark blue. He has been peeing blue ever since. He threw up his lunch and so they gave him some benedryl. Nathan has never done well on benedryl and he fell asleep and when he woke up he was not himself and was saying weird things to be about not making him get dressed and told me I had to "feed them". He also was very mad at me and was trying to kick me but also sobbing at the same time. I finally got him to go to the bathroom and he calmed down and went back to sleep. I don't know if it was the benedryl or the chemo that did that to him.

He slept most of the rest of the time and we came home. He has not gotten sick again. I don't think he got sick from the chemo as much as from the combo of medicines he got. He must have had 7 diffent meds today - 3 which were chemos. We would not expect the chemo itself to make him sick on day 1. He is now sleeping soundly - but I expect he will be up alot in the night due to all the fluids he is on.

It is very hard to see Nathan feeling sick and out of his head also. I really hope he can do some easier treatment next. It will be a difficult decision if they want him to do antibodies because they couse him so much pain and the meds make him crazy.

They took his urine last week and we got the results. They were just a tad higher than last time (in June). The levels aren't a great indicator of what is going on inside him but hopefully it means the cancer is not running rampant. Of course, the test is 10 days old and this cancer can move much more quickly than that.

It seems to be all worked out for Nathan to go the the pediatric floor at the hospital for chemo this weekend. He can go in and come home both days so he shouldn't have to sleep there unless something crops up. This is really good for all of us - including our finances! We are so lucky that the nurses and doctors are willing to arrange things for us that normally would not be done.

So - back to the clinic for more chemo tomorrow. He has 5 days total. We haven;t heard for sure when he will get his stem cells back but it will likely be Wed. or Thur. next week.

I'll update again tomorrow night.

Wednesday, August 2, 2006 7:22 PM CDT

***** Thursday morning update *****
I got a call from the clinic this morning while Susan was on the way in with Nathan. Renal function is "normal" and they were mixing up the chemo. Nathan gets started today. This should be pretty hard on him, but it is a relief that his capable of doing it. We still don't know the details about whether or not he can get the chemo at the hospital outpatient this weekend while the clinic is closed, or if he will have to go inpatient. We'll keep you all posted with how he is doing.
***********************************

First off - we have no test results. They were supposed to be ready at 3:30 and now they said maybe tonight. The doctor is supposed to call and let us know if he hears anything. They wasnt us to go ahead and hook Nathan up to fluids tonight and go in tomorrow morning.

I am so frustrated about this! We are very nervous about the results because if he can't have the strong chemo his options are very limited.

He is still having hives. Another NB mom to me that her daughter had hives when her cancer was progressing so now I have to wonder about that. Nathan hasn't complained of poain nearly as much today and has been jumping around - so that is good.

I am having horible itchy watery eyes from something growing around here and am miserable. It doesn't help me cope with everything!

Today went well. We got up to Denver very quickly. Unfortunately they had to inject Nathan with a butterfly needle since the test is so sensative and they could not risk any of the isotope remaining behind in the port's resevoir. It took two pokes and Nathan was just freaking out! It has been a long times since he has had to be stuck and he is no longer used to it. Ugh!

They then took his blood 4 times in the next hour and then we got an hour break. We walked over to the Children's hospital to go to the gift store for a toy and to watch the ball machine (too tired to explain that right now).

He then had another draw with a half hour break and then we finally got a 2 and half hour break and had lunch and went to the Denver office for Nathan's oncologist and talked to the doctor there who is coordinating the stem cell infusion.

Two more blood draws and we were out of there. Nathan and Lauren slept most of the way home so it was nice time for me to have my own uninterrupted thoughts. Lauren had been fairly fussing most of the time were were there so it was good to get a break.

So - that's where we stand and I will update again tomorrow. Please send thoughts and prayers our way for a good kidney function so Nathan can start chemo in the morning.

Tuesday, August 1, 2006 3:13 PM CDT

Well - there are a few developments so I thought I would update.

First, Nathan has been complaining of back and leg pain. It is likely the cancer that is causing him the pain and it is making it even harder to sit here waiting to start chemo.

He also is having low-grade fevers - which may also be the cancer. He also has hives - probably not the cancer but we have no idea what is causing those.

I called today to ask about the hives and his regular doctor is out (for the week) and it is a good thing I called because they had to ask me if NAthan was supposed to have chemo here or in Denver. One good thing is the other doctor is going to push hard to get the test results by the end of the day on Wednesday. That way, we can start chemo on Thursday instead of Friday. They will have IV hydration sent over and if the chemo is a go I will hook Nathan up to IV tomorrow night in preparation for the chemo.

They are still working on how Nathan will get his chemo over the weekend. He mya be able to get it at the hospital during the day and not stay the night. We are hoping that works out - but if not he will go in on Saturday and come out on Sunday.

If he can't have the high-dose chemo I don't know what they are going to do. I suppose they will just give him more of the same chemo he got before and then try to figure out what from there. It is such a scary position to be in - seeing the limited options and knowing that someday all the options will run out for Nathan.

I talked to the school nurse today and she is sending the forms to get a tutor to come out to the house. School starts August 14 and there is no way Nathan will be there. They will give him 5 hours a week. That isn't so great - but I guess if he is not feeling well that will be enough and i he is feeling good but just neutropenic I will supplement. I told him to expect to be doing schoolwork whenever Julia is at preschool (4 afternoons a week).

So - that is the update from here. I will update again tomorrow night.

Sunday, July 30, 2006 6:30 PM CDT

We have had a very good weekend.

It started early on Friday when we all went to a military day given by the Starlight Starbright foundation for kids with cancer. It was held at a local Air Force base and it was awesome.

First, we went to the base fire station. They pulled out the crash fire trucks and sprayed water with them. Then the kids got to climb all over them and talk to the firefighters.

Next, we went out on the airstrip where they had a large cargo plane that we could go into and check out. There were lots of airmen there who talked to the kids about the plane and they also got to sit in the cockpit.

Then we saw a demonstration by a service dog and its handler.

We finally went to a park and they had lunch for us and also a Humvee that the kids could explore.

We all had a blast!

Since we figure this was our last free weekend for a very long time we decided we needed a mini-vacation. Saturday morning we went up to Denver to the Children's Museum. It was so cool! Nathan and Julia got right into all the imaginative and role play and were so happy. We then checked into a hotel and went swimming and then to Johnny Rockets for dinner. Today we got up and had breakfast in the hotel, went swimming again and went to the aquarium. We had lunch and drove home.

Phew!

Here are some pictures.

Wednesday, July 26, 2006 4:18 PM CDT

Further update...they found a different hospital in Denver to do it on Wednesday. We aren't thrilled to wait until then, but it is better and probably as soon as going to NY for it.

The test will check Nathan's kidney function. He has only one kidney left and this chemo is hard on kidneys so his local docs feel this test is neccessary. We agree - it is scary to be doing such harsh chemo. It is only slightly less harsh than his transplant chemo. Anywa - we are hoping for good kidne function. before his transplant his function was off-the-charts good so we are hoping that evenwith losing a kidney and more chemo it will be OK.

Ugh! what a couple of days we have had.



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

Update - the earliest Nathan can get the test he needs to begin chemo is August 16!! No - that is not going to work. His doctor is suggesting another round of the chemo he got meanwhile. Luke and I do not like that idea at all. We are waiting for a callback. We are not sure what we will do. Perhaps we will see if we can just go to NY to do the test and the chemo next week.

I'll update later...

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

Well- it is a good thing I didn't post the first time we thought we had a plan this morning because it has changed already.

We have a tentative plan, but are still working on it.

Nathan will most likely not go straight to NY to do the MIBG/aresenic trial because he would not be eligible if his disease has progressed and given the nature of his disease and that he hasn't had chemo in almost 6 weeks it is likely that his disease is progressing.

The plan is for Nathan to have high-dose chemo here (ICE for you fellow NB'ers) followed by a stem cell rescue. I think I mentioned before that Nathan has two bags of stem cells. They would use the small bag to rescue him enough for his white count to come up high enough to travel to NY and then be rescanned and get either the MIBG or antibodies. His stem cells are at Denver Children's hospital and so we would go there to get thiem back. This is not a stem cell TRANSPLANT - he would just get his stem cells back as an outpatient. Also - he will not o into the hospital for his chemo as long as we can start it on Monday (it is a 5 day course). If we want to start it sooner he would go in the hospital but I don't think we will do that.

I just called his local doctor and he has a few concerns and questions about the plan and needs to talk to his collegue who is the stem cell expert of the practice. He won't be able to do that until tomorrow. They need to feel secure in using the small bag of stem cells and also one of the chemo agents is hard on kidneys (Nathan has only one now) and so he would want Nathan to have a kidney function test first.

I feel lucky we are working with these two doctors - the expert who is aggressive and our local doctor who knows us and Nathan well and is more cautious. I feel confident that all aspects of treatment decisions will be examined between the two of them.

Nathan's local doctor will call sometime tomorro after has has the information he needs and we will make a final decision about this chemo. I will update again then.

Monday, July 24, 2006 7:22 PM CDT

TUESDAY JULY 25 7:14 AM

We haven't heard anything yet from anyone about having chemo. Nathan's local doctor is at work today so I expect we will at least talk with him even if he hasn't heard from Nathan's NY doctor.

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

Well - Nathan's counts are finally all recovered but we still don't know if he is having chemo this week.

His local doctor emailed his NY doctor last week and the team in NY wants Nathan to do the MIBG therapy followed arsenic trioxide, folloed by by high dose chemo followed by radio-labelled antibodies followed by regular antibodies. I think they are assuming Nathan has 2 stem cell rescues available instead of just one and so I think this plan will not stick. Also, this would mean many weeks spent in New York and we need to weigh the potential benefits of this treatment to downside of being apart as family and away from home for so long. There are so few treatments available for Nathan anyway so staying home might mean not pursuing much treatment and so we really need to understand how effective this plan could be to decide if it is worth it. All of these treatments come with risks and difficulties for Nathan. It is going to be a difficult decision.

The NY doctor did not say if Nathan should go ahead and have a round of chemo this week while he is waiting for treatment - nor did he say when Nathan could possibly start having these treatments so we have a lot to figure out.

We also do not know when we should scan Nathan. If he starts treatment in NY soon, then he will go there and get all his scans done as part of the pre-treatment testing - otherwise we don't know. They did get NAthan's urine today to test that. If it is much higher or normal that will give us a little idea of what his disease is up to.

We are hoping to know tomorrow morning if Nathan will have chemo this week. I will update when we know more.

Friday, July 21, 2006 8:36 AM CDT

NAthan had his counts checked again yesterday. His platelets were up to 53,000. Not enough to do any chemo but at least they came up well from 35,000. His ANC was down to 900 from 1000 but that is no surprise since they took him of the medication to boost that. His red blood count was stable. He is anemic but that doesn't affect anything.

We still have no plan in place. We are hoping for some guidance by Monday from Nathan's NY doctor. We did find out that Nathan only has enough stem cells for one rescue. This is disappointing because there are several therapies out there that require stem cells and it looks like we will only get to pick one of those and then there will be treatments that Nathan is just not eligile for. It is clear that most chemos are not possible due to Nathan's counts.

Nathan has an appointment for Monday to check counts but that will probably be all he will do. We may try to get him tested next week. I don't know - like I said - it is all up in the air and it is going on 5 weeks without any treatment for Nathan so it just isn't very good.

I need to wrap this up - lightening fried our ethernet for the second year in a row and I need to let Luke get to work on the one USB connection we can use for internet. I will update if I hear anything about a plan.

Monday, July 17, 2006 3:57 PM CDT

Well - platelets are still too low. No big surprise. His immunity is OK. It is a bit low considering he was on the neupogen but at least he can be out and about. He will go back on Thursday but I don't think he will start chemo until next week. We have an email out to his NY doctor to make sure another round of chemo is the right thing to do. Luke and I are hesitant to do another round without getting some questions answered. The NY doctor is out of his office until Wednesday and so we hope to hear his response before Thursday's appointment.

We had a good weekend. On Saturday we went on a picnic with Luke's parents. Sunday we went to church and to a get-together with some friends.

So - we will try to enjoy the week since Nathan can go places. Also, my best friend is visiting from California with her daughters and so we will be having lots of playdates.

Thursday, July 13, 2006 8:02 PM CDT

Nathan's counts are coming up - but still very slowly considering he is on medication to boost his white cells. Who know if they will be up enough to start chemo on Monday. We'll just have to wait and see. His ANC (immunity) is 500 - so that is high enough to be out and about some, but we still have to be very careful not to get him around sick people or too many kids. His platelets are 56,000 and after his transfusion on Monday they were certainly higher but no one knows if they are going up or going down right now. Other good news is that he has been fever free since Tuesday. I think the new antibiotics my have done the trick.

Luke is feeling much better. He had a birthday yesterday and we had a good time making homemade ice cream and eating cake.

Julia got a clean bill of health today at the doctors and so hopefully the oxygen company will come get all the supplies out of my house.

We hope to have a good weekend getting out of the house some and finally getting back to church.

I will update again on Monday.

Tuesday, July 11, 2006 7:29 AM CDT

Another week - still low counts - still low fevers.

Nathan needed more platelets yesterday and his white count was up but only a tiny bit. We are now hoping for more chemo on Monday, but I am not even sure how realistic that is. He had fevers on and off all weekend. His doctor put him on a different antibiotic and took a chest x-ray which was clear. His coughing is worse and he is feeling down about being sick.

I am in a somber mood this morning because I was dreaming about Nathan and school before I woke up this morning. I don't know how much, if any, school Nathan will be able to attend this year and I am really feeling down about it. He has no idea about school and just hope he is not too upset. I am hopeful that after the next round of chemo he might be able to start one of the drugs that he could take while going to school. There are a few of those out there and if his disease is under control he may be able to do something easy for a while.

Luke is getting better from his pneumonia. He is still coughing and very tired but there is improvement. His parents arrived on Sunday and will be here for a week. Nathan and Julia are ecstatic to have their grandparents visiting.

Nathan will go back on Thursday for counts. The two day break from the clinic will be good.

Friday, July 7, 2006 6:43 AM CDT

Update 12:03 PM

Well - Luke went to the doctor and had a chest x-ray. He has pneumonia too. Of course - he is downstairs working now and not resting like he should be.

Nathan is still feverish (103.5 a few minutes ago). The CMV test came back negative so that is a relief. He probably just has this sickness. His doctor swabbed his nose so we will find out exactly what this virus is. His white count is only up a tad and he still has no immunity. Hs platelets were 54, which isn't bad. We just eed to see if they are still going down from the transfusion high or are starting up again themselves. So - we didn't have to stay at the clinic very long and Nathan, Lauren and I are home resting. Julia is staying at Tammy's for a while longer so she can have some fun.

So - we have another weekend at home and hopefully everyone will be getting better! Nathan will go back in for counts on Monday and we are crossing our fingers that he can start chemo on Wednesday.

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

Today isn't starting out very well. I have been up since before 3:00 am. Luke has a fever and cough. Nathan's fever is back. I have a nasty cold. I really hope Nathan doesn't need to be at the clinic all day because I will probably fall asleep. Lauren is bound to be cranky and so being at the clinic will only make her more cranky I am sure.

I will update later with counts.

Wednesday, July 5, 2006 8:22 PM CDT

Not the best day for counts. Nathan's white cells have gone back down and his platlets were 11. His fever continued throughout yesterday and most of today. We were up several times in the night to check it and give Nathan Tylenol. It went away around 10:00 am this morning but appears to be coming back this evening. Fever "eats" platelets and so I hope he got enough of a boost to last a few days.

Nathan's doctor is testing him for CMV (a virus that can cause pneumonia). He thinks there is a chance that he has it since Julia had pneumonia. That kind of freaks me out because I know kids who have had CMV when they were post-transplant or post-surgery and have died since their bodies were unable to fight it. I am assuming if he does have it - it isn't too bad yet since he is feeling OK right now.

So - Nathan got some platelets today. We had to wait and hour and a half for them to arrive and so we went and got some food and sat under a tree and ate it. Since Nathan cannot be in public places we didn't have many options.

Nathan will go back Friday morning for counts. He is still on antibiotics which is good but bad in that they cause diarrhea which is already a problem for Nathan.

Julia is off her oxygen during the day now. She made a rapid improvement to 93 on room air. We will test her in the night in a few days to see if she can come off it all the way.

Lauren has a bad cold now. She has a very runny nose and is cranky. Neither Luke nor I are feeling great but who knows if we are sick or just exhausted. I fell asleep at 8:00 last night.

Well - Nate and Jules are supposed to be in bed but are up so I need to go deal with them.

Monday, July 3, 2006 9:33 PM CDT

UPDATE Tuesday July 4 2:06 PM

We monitored Nathan's fever throughout the night and it stayed between 100 and 101.5. In the last few hours it crept up to 102.5 and he is feeling lousy. The Denver doctor called Nathan's doctor and so we got him on the case, which was what we needed. He ordered IV antibiotics to be delivered to the house this afternoon. We also are going to give him tylenol and then continue to watch him for signs that he has an infection. They usually hospitalize with fevers over 101.5 because the child may have a blood infection from their line/port. Nathan has never had one and he had negative cultures from the last time he was in the hospital and so we will just watch him carefully for any symptoms. It isn't fun setting the alarm to get up and check him in the night but if we stay out of the hospital that way then we'll take it.

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

I should have written earlier because I am so tired. I hope I can remember everything I want to write.

Nathan went to the clinic. We were surprised to discover that his white count is on the way up. It is still very low, but definately coming up. His hemoglobin was still fine at 11.6 and his platelets are at 25. We don't know if they are on their way up or down. We assume they still might be going down but they would eb lower if his body wasn't making any so we are going to take a gamble and wait until Wednesday to see where they are.

The current plan is still to start chemo again as soon as Nathan recovers. If this happens in a reasonable amount of time he will have the chemo and then we will probably just do an MIBG scan to see if it has improved.

Nathan's hair started to come out today. Both Luke and I have been checking (yes - covertly pulling on it to see) for a few days and Nathan mentioned it to me today. So - we shaved it all off. He still has lots of stubble that will fall out over the next few days. Afterwards he mentioned that he didn't want to go to Illinois with no hair and shortly after that started talking about how much he doesn't like cancer. So - the haircut definately made him a little sad.

That is not his only physical change of the day. His two front teeth have been loose for quite a while and today he placed his face in front of Lauren's feet and she kicked out the very loose tooth. It bled a little since his platelets are low but it was ready to come out.

Lastly, on the Nathan front, he currently has a fever! It has been up to the magical 101.5 but we are just keeping an eye on it for now. We really don't want to put him pback into the hospital. Neither of the local docs are on call and so the Denver doctor can't really tell us much besides to admit him since he doesn't know him and so Luke and I will decide about it ourselves and call if we feel he needs to go in. He is currently asleep with a slightly lower fever. If he does go in, we can't even all spend time together at the hospital since Julia is on oxygen.

So - on to Julia. She still needs oxygen. Her left lung is still not doing well. She is getting better though. I think it will be a few more days on the oxygen 24/7 and then only at night for a few more nights after that. The doctor said we can just monitor it ourselves and let him know when we feel she is ready to be off. Being cancer parents seems to be worth a nursing degree I guess. She is doing so well with wearing the nose cannula. She is not complaining at all. I know I would be! She is a trooper!

So - our plans for the fouth are to hopefully not be in the hospital and just be at home since the kids can't go out. We are doing some landscaping. I may not be able to get rid of Nathan's cancer but at least I can mercilessly hack at my juniper bushes. Fireworks are too far away and too late and too hard with oxygen so just not in the cards this year.

Take some in for us!

Friday, June 30, 2006 7:29 AM CDT

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

UPDATE: 7:13 PM

Nathan had a good night and was quite chipper when I got to the hospital. His doctor wanted him to have another antibiotic dose and then let him go home. We got home shortly after noon.

Nathan will be on this antibiotic at home. It is oly once a day. Usually he would get this at the clinic and then be on every 6 hour atibiotics at home. His doctor could sense my relief when he told me it was once a day and said he didn't want us to have an ICU at our house.

The respiratory therapist came to check Julia around 12:30. Julia's oxygen level was 94 (out of 100) on 2 liters of oxygen and it was 85 on room air. So - she definately still needs it.

She felt pretty crummy this morning but perked up. She and Nathan caught up on all their playing this afternoon. He is a little tired but otherwise seems to be feeling great. His transfusion made his hemoglobin rise to 14. That is higher than it has been for most of the past 3 years so I am sure that felt good. His platelets rose to 74. There is a good chance he will need some more on Monday. Platelets only take an hour and a half so that is no big deal. Well - he will also get antibiotics at the clinic on Monday - another half and hour.

Bone marrow biopsy results showed no cancer. Now - we KNOW there IS cancer there and the aspirate (liquid) part of the bone marrow did show cancer in on of the four sites. What this does mean is that there isn't a ton of cancer in his hips anyway. This is definately a good thing. His urie results from NY were normal. The ones here were elevated. No real info to be gleaned from that - just that he doesn't (or I should say DIDN'T at the time of his tests -w ho knows now) have massive amounts of cancer in his body.

So - we are all under the same roof tonight. We will be staying home all weekend - between Julia's oxygen and Nathan's lack of immunity we cannot let them out.

Luke and I are exhausted. In a few minutes I will nurse Lauren and put her to bed and I suspect Luke and I will not be far behind.

A neighbor brought us a yummy pan of enchiladas for dinner tonight - that was wonderful!

So - we EXPECT to remain fever-free and calm this weekend. Also - we still need to see that Julia gets better and does not have to go into the hospital - that is the last thing any of us need!

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

Good morning.

I thought I updated last night but I guess I didn't.

Everything is going OK. Nathan did fine with his transfusions. He continued to have fevers though. Luke and I swapped around 5:00 pm last night and when I talked to him later Nathan was settled in and doing well.

Julia is good too. It is obviously an annoyance to be connected to oxygen - especially when you are 4. There is a machine whith 50 feet of tubing so she can walk around but she has to keep it from getting hung up on things. She slept OK last night but I did not. I kept waking up and hecking things. Then she woke me up to tell me her cannula had come off and then Luke's alarm went off at 4:00 am (old alarm to check Nathan's fever) and now I am awake but she is still asleep. I had to tape the cannula on.

Lauren was also off. She wouldn't go to sleep last night and as she cried she got herself up to a sitting posision so I had to keep going in and laying her back down. I finally just stood there with my hand on her back and she went to sleep.

Nathan's bone marrow results (the final ones with percentages) were faxed to his local doc yesterday so I am hoping he has those for us this morning. Nathan's urines came back elevated, but only slightly - so they will not be the hoped for indicator of disease level.

Luke will update again later I am sure.

Wednesday, June 28, 2006 3:49 PM CDT

----
Yet another Thursday morning update...
Luke here. Susan swapped places with me this morning. After she dropped Julia off with her sitter (such an inadequate description), Julia's cough worsened. We had a Dr. appointment for her because she still had the cough and had another fever a couple of days ago. We were going to cancel it but her breathing was bad so I went straight from the night at the hospital, got Julia, and went to the doctor. She is sitting next to me on the couch now on oxygen and is being treated for pneumonia. I had the choice of having her admitted or having her at home on oxygen. So, yeah, I guess when it rains it does pour.

Nathan's fever was high again this morning without tylenol. He will get his transfusions today and stay the night again. We don't want to take him home if there is a good chance we will have to put him right back in, so it seems safest to keep him there again tonight. He was a great sport about being dragged from bed into the hospital and isn't feeling too bad. The last time I saw him in his hospital bed when I left this morning he was feeling better than Julia is now.
----

R>
Update Thursday morning...

Luke took Nathan to the hospital around 1:00 am. His fever had gone back up to 102.3, I think once they feel certain he does not have any infections they will let him come home. Meanwhile he will have his transfusions and antibiotics today and I am assuming he will stay tonight. I am heading over and Luke is coming home to wrok.

R>


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

Update - Wednesday night

Nathan felt great unti ldinner. He put his head down at the table and we put him to bed. He had a fever of 101.9. 45 minutes later it was 102.7. We called the doctor and he had us give Nathan tylenol. the fever came down to 100.1 and so we will monitor it through the night. If it gets above 101.5 again he will be admitted. Normally, he would have been admitted automatically - but considering this is his second relapse and Luke and I know what to look for they are doing everything they can to limit hospital time.

Unfortunately, this means we will not be going to Illinois for now. We still hope to go another time.

If he stays home tonight, Nathan will go into the clinic even earlier than planned and get some antibiotics before his blood. So - it will be an even LONGER day!


I will update tomorrow

********************************************
Well - Nathan's counts have TANKED! We have had him out and about with no immunity! He has felt great and was riding his bike yesterday and doing other normal active things so we had no idea. So - his ANC is zero (immunity) his hemoglobin is 8.4 (normal is 12 ) platelets are 24,000 (normal 150,000 ). So he needs red blood and platelets transfusions tomorrow. That will mean about 5 hours at the clinic.

So - this is not good but not unexpected. We suspected Nathan's bone marrow would have a hard time with the chemo and it certainly is. It seems unlikely he will be able to continue with chemo because he needs it every 21 days and if his bone marrow can not recover by day 21 then he is left off of treatment until it recovers and that gives the cancer time to start growing again. His doctor is looking into other treatments. We will do whatever treatment he can do. He feels so good there is no way we are even close to giving up treatment. We still do not know how much of his bone marrow is affected. That piece of information will be helpful. His NY doctor has not gotten back to me or to Nathan's local doctor on those results even though I am sure they are in by now.

No word yet on if we can travel to Illinois. We hope to know by tomorrow.

Monday, June 26, 2006 10:07 PM CDT

There's not too much going on. Julia's fever finally is gone but she has a lingering cough. Nathan seems like he feels great. He has tons of energy. He and Julia went to the zoo today with Tammy and he did not tire out and went on to play hard the rest of the day. He definately looks anemic though - he is so pale. You really would not know he had chemo last week. It is so odd. I feel confident that it wasn't just water in that IV ;) His hair will probably start to fall out in a week or so. It is quite long right now (for him) and so once we see signs it is falling out we will buzz it so it doesn't irritate him.

Lauren is doing great. She is army-man crawling all over the place and can get from tummy to sitting and back and has also started to pull up on things. She is a happy baby and brings us so much joy. She only cries when she is tired or teething. She is working on tooth #2 right now so has been a little cranky - but really it is nothing!

I will update again after Nathan's appointment on Wednesday or if we get some of our test results we are still waiting on.

Saturday, June 24, 2006 5:51 PM CDT

Nathan continues to feel good. He was very tired yesterday afternoon and evening but bounced right back today and is currently running around outside with the neighborhood kids. Julia is still sick but I think she is better.

They checked Nathan's counts yesterday and it was disheartening to see that his hemoglobin has dropped to 10.5 It is too soon for the chemo to be causing the drop and so we can only assume it is the cancer taking over his bone marrow. We can only pray the chemo slows it down and that we will be able to give him another round without too much of a delay. We still do not have the reports from NY about what percentage of his bone marrow was affected in his biopsies. The good thing is that Nathan is not in any pain from it.

Luke took the big kids to see Cars today. They had a good time. They rarely see movies in the theater so it was a treat.

Nathan goes back to the clinic on Wednesday to check his counts. I am expecting he will need a blood transfusion on Thursday.

Thursday, June 22, 2006 7:55 PM CDT

Chemo day 4 and Nathan is stil feeling great. You would think there is nothing but saline in the IV. He is full of energy and eating well. He doesn't even have "chemo eyes" (kind of sunken raccoon eyes).

Julia still has her fever. I took her to the doctor again and they are still waiting and thinking it is a virus. One development is that it appears her friend Brady, whose mom is Julia's awesome child care provider, may have what Julia has. So, it seems it may be a virus after all. This is good if it means it is not serious for Julia. It is not so good if that means the rest of us - especially Nathan - get it. So - I guess we will just have to wait and see a few more days.

One piece of good news is that I think we will be travelling to Illinois soon to visit Luke's family. This was our plan pre-relapse and I think Nathan will be able to receive care in the cancer clinic in Champaign while we are there. We have to see how everyone's health holds up though.

I am glad tomorrow is the last day of chemo. Lauren is getting tired of being there. She has had a pretty good time the first few days. They have a walker she used and I have put her on the floor on a mat and she has crawled around. Today she was on the bed with Nathan and just wanted to pull his IV the whole time.

Nathan is getting sick of going too - but he has been able to keep pretty well entertained. I bought him a gameboy advance and he has been watching movies and playing with cars and trucks. He will really be whining when he needs a blood transfusion - we are there for 5 hours for that.

Wednesday, June 21, 2006 7:42 AM CDT

UPDATE Wednesday June 21 9:05 PM

Nathan's chemo went smoothly again today. Afterwards I dropped him off with Julia so I could run some errands. She was a mess shen I picked her up. Her fever had rose again to 104.2. I will be taking her back to the doctor tomorrow for bloodwork if she still has a fever. I am concerned she has Kawasaki's Disease again. There are all sorts of weird symptoms to go along with the high fever that help diagnose it and so I am on the
lookout for those other things. So far she has two of them. They could both be other things of course.

Nathan is feeling great - so that is fortunate. I would be even more of a mess if he was feeling bad too. As it is my stress level is extremely high. It is too much to ask for my chidren to be healthy? I am feeling a little sorry for myself. I rarely feel that way because it only hurts to ask "why my family?" but I am just feeling the unfairness of it all tonight.

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


Yesterday chemo went just fine. I kept an eye on Nathan as I drove away and he seemed good.

So far, the chemo hasn't affected how he is feeling. After today I suspect he might start feeling some effects. So far this morning he is chipper and working on a puzzle.

Julia is still sick. I took her to the doctor yesterday and they tested her throat and her urine and they were both negative. So, I guess it is a virus. How long until the rest of us get it?

So - more chemo today - hoping for another calm day.

Monday, June 19, 2006 5:17 PM CDT

Day one of chemo is behind us, though it was not uneventful. It turns out it is only 1 and a half hours for the infusion which is nice and short for chemo. While he was having the chemo I got the chance to look at the MIBG scan with Nathan's doctor. If you recall I knew I saw something bad during the scan and what I thought I had seen were tumors. Well, he doesn't have any tumors but the cancer is lighting up all up and down his spine and so I was seeing those spots. It is also lighting up on his skull, shoulders, arms, hips and well I don't recall now if elsewhere. We still do not know the percentage of involvement in his bone sample that was taken. We are hoping for fairly low, of course. Considering he is not in pain it shouldn't be too high. His hemoglobin has been dropping though and that is a sign of the cancer in his marrow.

After the chemo we stopped off to get Nathan a goodie from a nearby bakery. As he was deciding what he wanted he started to stagger and sway. I sat him down and his eyes rolled back and closed and I had to call his name to get him to open them back up. He recovered fairly fast and we went right back to the clinic (cookie in hand) and they looked him over. They could find nothing obviously wrong. His doctor decided he needed and echocardiogram since the chemo could cause heart problems and we needed to rule that out before he has more chemo. So, we went right over to the cardiologist office and he had an echo. Thankfully, the tech said his heart function looked just fine.

So - we came home (via Sonic for some food). Nathan is feeling a little nauseous and it is too soon for the chemo to make him feel that way. It is very hot today and so perhaps the heat is causing his problems. Either way - that was pretty scary.

So - day one of five down. I am hoping tomorrow is smooth sailing.

Oh, and Julia still has a fever.

Sunday, June 18, 2006 9:28 AM CDT

"That was the best party ever!"

That's how Nathan summed up his birthday party yesterday.

We had a party at a county park where we rented a pavilion. The weather was perfect - 70s and sunny. There were about 60 people - half of them kids. They ran around with balls, squirt guns, rockets, bubbles and ribbons and played on the playground.

We had planned to cook burgers and hot dogs but the county has a burn ban due to fire danger and so we brought in barbeque. That turned out to be much easier!

Luke and I had a good time visiting with friends and watching all the kids.

Julia seemed out of sorts and we were worried about all that may be going on with her. Before we put her to bed last night we took her temperature and found out she had a high fever. We are a little relieved that sickness explains some fo the way she was feeling yesterday. She has a low-grade fever this morning and it will hopefully be gone in a little while. It will not be good if Nathan gets this! He may have to go into the hospital but we hope since we know what it is he could stay home.

Nathan got way too many presents and they are not all out of their boxes yet. I told him we will have to build a new room onto our house to store them. He deserves all the prsesents in the world and the happiness that come with them.

Since Julia is sick will be home today. We had planned on going to church and I would really have used it today. I am listening to it online instead.

Last, but certainly NOT least - Happy Father's Day to my dad , my father-in-law, and of course, the father of my children, Luke! He is such loving, fun and caring father and we are so lucky to have him.

Friday, June 16, 2006 4:13 PM CDT

Happy Sixth Birthday Nathan!!!!!!

I can't believe he is six. So many times I never imagined him making it to six. I wish I could feel more secure about him making it to seven but I am trying not to think of that today.

We are busy getting ready for his party and tonight we are going to a survivors dinner for Relay for Life. He has gotten some of his presents and has refused to leave the house - he just wants to play with them.

He is confirmed to start chemo on Monday and I found out it will not be an all-day thing so that is good!

Thursday, June 15, 2006 8:06 AM CDT

Update - Nathan's doctor called a little while ago. Nathan has relapsed in his bone marrow. It appears the cancer is only in his bone marrow for now.

Nathan will have a round of chemo starting on Monday and we will be praying his bone marrow can tolerate it. There will not be a whole lot we can do if his bone marrow cannot handle the chemo.

We have told Nathan and he handled it well. I am guessing the questions and tears will come later.


Meanwhile his birthday is tomorrow and he has a party on Saturday and we are getting ready for that. The way we see it Nathan is here with us now and we will live life as normal as we can. We cannot see the future. We know what the outcome will most likely be but TODAY Nathan is feeling good and is here and so we will take one day at a time.

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



We are home. No results yet.

I have been debating about writing this - but I saw some things on the MIBG scan that did not look good. I hope I am wrong - but I am not expecting good news this time. I will update when we hear something.

Tuesday, June 13, 2006 9:42 PM CDT

Luke here with a really quick update. I heard from Susan tonight. They all made it through their incredibly insane scan day. I guess many of the scans started late and the waiting was pretty frustrating, but they made it through everything and he did well with the MRI, which was new for him.

Susan and Nathan head home tomorrow sometime after his MIBG scan. The doctor says that they may have some results tomorrow afternoon and will be emailing them since Susan and Nathan will be heading straight home.

Julia is doing well. She stayed at the house of a friend from preschool on Monday and had a very good time. Today she stayed with good friends of the family who also fed us dinner tonight. It was really nice for us to have a fun diversion with friends tonight.

We'll update with scan results when they start rolling in.

Friday, June 9, 2006 4:24 PM CDT

Nathan finally saw the GI doctor yesterday. He didn't say anything surprising. He suspects Nathan's problems are due to damage from chemo. It is a diagnosis of exclusion and so he ordered a bunch of bloodwork to check for various diseases. If they come back negative then he wants to look inside Nathan with an endoscope. Meanwhile he wants Nathan to be off of all dairy for 10 days so we can know for sure if he is lactose intolerant. He also ordered an x-ray to make sure that it isn't constipation causing the diarrhea (sounds wierd huh!).

We went out to lunch and then to the clinic for a blood draw. They drew his blood for a test he needs to have his CT scan in NY on Tuesday and also the bloodwork for the GI doctor. We went downstairs and got him an x-ray while we were in the building. He griped about getting an x-ray - I am not sure why. He knows the big scans are coming up and so I think it was related to that. He has been pretty emotional. He was very upset about the dairy thing and pretty much feeling very sorry for himself. I am trying to figure out just what he will be able to eat before his urine test when he cannot have various foods and now he can't have dairy either. I think he will have to drink water and eat crackers or something!

So - the countdown begins to scans. I am so stressed about them and also the travel. My mom is meeting us in NY to help but it will be just Nathan, Lauren and I travelling and so that is me handling a baby and all the luggage. Luckily we can pack light for just 2 days and I am able to borrow a crib in New York. We wil have to leave the house at 4:30 am and drive for an hour and a half to the airport. I haven't figured out exactly how I am going to manage to nurse Lauren with that schedule. I just might have to get up at 3:30 am to do that!

Nathan's scan schedule is as follows:

Tuesday the 13th
7:00 am - drink oral contrast
8:10 am - Cat scan of chest, abdomen and pelvis
11:00 am (give or take an hour or two!)Bone marrow aspiration and biopsy
1:45 pm - MIBG injection
4:00 pm - MRI of the head

He has never had an MRI of the head and the last MRI he had here they sedated him. He will be awake for this one and I know it will be hard for him so I hope it all goes OK. I am hoping he might doze a little.

They will also collect his urine all day for that test.

Wednesday the 14th

8:00 am - MIBG scan (takes about 1.5 - 2 hours now that Nathan is taller)

So - as you can see, Tuesday is a very busy day. We are coming home Wednesday evening. Nathan was a little sad about not getting to stay in NY longer but I wanted to be home in plenty of time for his birthday. The downsideis that if scan are not good we won't be able to talk to his doctors face to face about a plan. I just have to hope scans are good and we get another 3 months to enjoy a normal life.

We may have some preliminary results on Thursday or Friday. I will probably not post anything until we come home because I will not be bringing my computer. I will have my PDA so I can browse and read e-mails but will not be able to write anything. Luke will update if there is anything of note.

Tuesday, June 6, 2006 1:34 PM CDT

Hello,

Want to see what we have been up to last week? Click
here

We had a great trip despite all of us having a terrible cold/cough. Poor Lauren still sounds just awful.

Nathan is in the middle of round (3 or 4? I have lost track) of accutane. We kept the sun off him well with SPF swimwear and clothing. He had such a good time. He cried about leaving several times yesterday.

Thursday Nathan sees the GI doc and gets a blood test at the clinic to bring to New York. We leave on Monday for scans.

I will update again in more detail Thursday or Friday.

Monday, May 29, 2006 4:54 PM CDT

Just a quick update...

Nathan had a good appointment on Friday. His counts were all normal again, which is very good. He seems fine physically - though his weight has dropped. His doctor was a little concerned but the weight drop has correllated with his increase in bowel problems and so I am pretty confident they are related. Nathan has an appointment with the pediatric GI doc on June 8 so we will hopefully start down the road to solving this problem.

Nathan started his accutane today. Scans are coming up on June 13 and 14. June 16 is Nathan's birthday and he is having a party on June 17. It was very difficult for me to plan his party for after his scans, knowing that plans will change if scans are bad - but I had no choice. I just have to hope scans are good.

We are up to some fun stuff this week and I will update about that soon. Laptop battery is dying.....

Thursday, May 18, 2006 10:05 PM CDT

I think I have finally recovered from my weekend. I have been pretty busy all week as well but after tomorrow morning I should get a bit of a break. It is just Nathan, Lauren and I for a few days while Luke and Julia are in Chicago. Luke's sister, Anna, is graduating from Loyola University tomorrow. Luke was planning to go alone and the kids were going to stay here because of Nathan's school. It occurred to me a few weeks ago that Julia could go with Luke. She is used to Nathan getting to go places and her being the one left behind and so we thought it would be a good thing for her to get to do the travelling this time. She is having a good time so far. Luke told me that she did start crying as they pulled out of the driveway though.

We ordered some Pizza and watched a little Star Wars tonight. I heard Nathan talking to himself a little this afternoon about being sad he didn't get to go but he is handling it OK.

Nathan is done with round 3 of the accutane. His skin is starting to heal. He gets so down about the accutane and its effects. I am actually wanting to keep him on it past the six months but I guess we'll see what the doctors say in June. His diarrhea problem is back in full force. He is on the verge of needing the flagyl again. I am going to call tomorrow to make him an appointment with a pediatric gastroenterologist. We need to find some solutions for him (and for the rest of us who have to sit near him...)

Nathan has one week left of school. He is jealou sof Julia whose last day of preschool was today. He enjoys his time at school, but never wants to go. Next year the full day will be hard on him. Of course I am just hoping that he will make it to first grade cancer-free and I will take all the coping problems I am handed.

Lauren had her six month check-up today. She is doing really well. She is a little peanut - just 13.5 pounds(10th percentile). The doctor is not at all concerned since Lauren is doing great physically and breastfed babies tend to be smaller anyway. She is very mobile now. She rolls all over the place and is trying so hard to crawl. She sits up as solid as a rock and can lean forward to get things and sit back up. She is just so adorable. Nathan asked to pick her up today. He has only ever hald her in his lap. He stood up and I handed her to him. She laughed when she realized that Nathan was holding her! He didn't hold her for long because he said she was pretty heavy.

That's where we stand right now. There is always something medical going on - but as long as it is nothing serious we can deal with it! I will update again after Nathan sees his oncologist next week.

p.s. Thanks to Dee in Wisconsin for the John Deere hat. Nathan was THRILLED! He wore it to school today. I will post a picture in the photo album page of this site.

Sunday, May 14, 2006 5:43 PM CDT

Happy Mother's Day! First and foremost to my mother and to my mother-in-law and to all my friends and family who are moms. A special mention to all my fellow mom's of cancer kids - you are one special group of moms!

I am exhausted from my weekend and so will write a real update in a few days.

Monday, May 8, 2006 11:29 AM CDT

Week one of accutane is done and Nathan seems to be doing a little better with it this time. He has some sores but his skin is not hurting him (yet). He did miss a dose yesterday because he was sick.

We went to church in the morning and on my way up to the choir lft I caught a glimpse of Luke in the cry room. When I came back down I found Nathan fast asleep on the couch - clearly not well. This was very disconcerting to us. We took him home and he slept on the couhc for a few more hours. He finally woke up and ate. The "good" news was that he threw up around 3:00 pm. The "even better" news is that Julia got it too. So we are definately dealing with a virus, not cancer. It is sick but true that every time Nathan feels bad we have to worry if it is the cancer.

Julia started throwing up at 10:30 pm and threw up every 30 - 45 minutes all night long. I sent Luke to the basement because he had to get up at 4:00 am to go on a business trip. This is his first trip since Lauren was born and so, of course, I have two sickies. I am trying my best not to get this bug as well while Luke is gone. That would be horrible.

Saturday was a good day. Luke and Nathan went to a baseball game where his school had a special day and Julia, Lauren and I went to a birthday party. We met up for dinner afterwards. Poor Nathan missed a birthday party on Sunday since he was sick.

We have noticed a little improvement with Nathan's nose on the Singulair. It is the first of 3 meds we are going to try for him. Perhaps a combo of some of these might work.

Nathan has a field trip tomorrow and so I am really hoping he gets to go to school. He hasn't thrown up since yesterday afternoon and he is eating and drinking today so he should be good to go.

I am off to Wisconsin for a day on Friday where my father will be awarded an honorary doctorate. I will update when I get back.

Monday, May 1, 2006 9:40 PM CDT

I cannot believe it is May already!

Nathan started round 3 of accutane today. He also went to the clinic for a check up. I am pleased to say his counts were ALL in the normal range. His platelets had still been lagging but were 201,000 today. It is a good sign that they have continued to go up. His bone marrow heath is a concern we have had and this shows that, while definately very sluggish, his marrow is still doing its job.

It has been a nice two weeks off of the accutane. It is kind of hard to start again. Nathan was very cranky and emotional tonight - I may start keeping a record since that can be a side effect of accutane. It could also be just a bad day. The skin will start breaking down in a day or two. I ordered Nathan an SPF shirt to wear when he goes outside to play. Last time sunscreen did not cut it. For PE and recess at school we will just send a long sleeved shirt to through over whatever he is wearing.

I don't recall if I have talked about his bowel issues lately but we had taken him off the flagyl and put him on a supplement that has live bacteria to help regain the balance in his large intestines. This worked wonders at first but he has been slowly slipping back to the way things were before - but is still in an OK state. If it goes back to te "bad" state that required the flagyl then maybe we will call in another specialist to baffle.

Nathan's oncologist noted that Nathan has developed a light curvature of the spine This is accompanied by a corresonding bulge next to his spine. His doctor checks this every few months and it is the first time he has noticed it. We will just keep an eye on it. It is frustrating that Nathan has so many other physical problems other than the cancer, but he is not able to see a long-term follow up specialist since he is still in treatment. Yes - we are fighting for his life but that doesn't mean that we want to ignore these other "minor" things.

The appointment was ended by an attempt to use a brand new form to send to the accutane regulation people that is supposed to give oncologists an override of all the hoops this program requires jumping through. In Nathan's case - specifically the 30 day rule for a prescription that Nathan needs every 28 days. The form has been faxed so now we wait and see what happens.

To transition from the medical to the other goings on I will mention that we have been passing a truly horrible cold around the family. Luke and I spend this weekend feeling crummy and the only things we did were laundry and trying to get the smell of spilled strawberry milk out of the van (after hours of steam cleaning...still smells). We are slowly recovering. I am just thankful to have been sick on a weekend for once so I had Luke's help.

Nathan has around 18 days of school left (they haven't actually told us when school is over yet...can you believe that!) How can it already be the end of his Kindergarten year? I have already started worrying about whether he will make in into first grade or if he will have relapsed again before than. He has scans June 13 and 14. Since his birthday is June 16 I just have to expect all good news - that is all I am willing to accept.

We have an extremely busy month coming up. Updating may be scarce. We have five engagements this weekend and one or all of us will be gone the rest of the weekends in May and Luke also has a business trip squeezed in there. So - we are hoping for smooth sailing for all these things and good health for us all as well.

Be on the lookout for April pictures. I am hoping to get them up in a day or two. Most of the pictures are of Lauren, since she is changing so much!

Thanks for checking in.

Tuesday, April 25, 2006 7:58 PM CDT

I took Nathan to the allergist today. He has had a chromic runny nose for years and also fluid in his ears that impairs his already bad hearing.

They did scratch tests for about 20 or so allergens. They were all negative. This is mostly good. Is some ways I wish we could have pinpointed something and taken care of it, on the other hand we knew he didn't have seasonal allergies so he could have been allergic to dust, dogs or something else that would have been very difficult to change in his environment.

So - we have three medicines to try to reduce the swelling in his nose and dry it out. We won't bother with antihistimines now that we know he isn't allergic to anything. So - why are his sinuses filled up? Why do other NB kids have these same sinus issues? I wish someone could tell us. I do not feel terribly optimistic about these medicines - but since the cause is unknown if we can find an easy way to treat the symptoms I would happy enough.

Things have been pretty good and normal around here this week. We had an amazing run of warm weather and so Nathan and Julia have spent a ton of time riding bikes and playing outside in the dirt. Nathan is on his second week off of accutane and so his skin is so nice and clear and soft. If is amazing how quickly it gets bad and how quickly it clears up again as he cycles on and off.

Lauren has been having wild swings with her sleeping ranging from sleeping for 12 hours at a time to spending the whole night in our bed. I am hopeful the trend will become the 12 hours.

I feel like there is more to update but Lauren is trying to eat my arm and keeps kicking the mousepad messing me up - so I will try to update a little sooner next time.

Sunday, April 16, 2006 1:38 PM CDT

Happy Easter!

The picture above is from this morning. We are having beautiful weather for Easter in Colorado - sunny and 70s. It was a good thing since my choir sung in an outdoor sunrise service this morning at 5:45 am. I also sung in the 7:00 and 8:30 services. There were 3 more services I skipped due to Lauren's nursing schedule. Luke and the kids attended the 8:30 service and we have been home relaxing since.

Nathan has his last dose of accutane for two weeks tonight. Hi poor mouth and upper lip area are so red and peeling. He also got a sunburn on his neck and a little sun on his arms. This was despite putting sunscreen on him every day before he leaves the house. We have graduated to protected clothing and a flap hat. Unfortunately the suncreen hurt his neck really badly after it burned.

Nathan finally has an allergist appointment on the 25th. I know it will take time to figure things out but I am happy to be taking a step in solving the runny nose.

We have Nathan's next set of scans scheduled in NY for June 13 and 14. Luke and Julia will stay behind this time. I will be having someone come to help me with Lauren - not sure who yet.

Other than the skin problem Nathan is doing great. I can't believe he is almost done with Kindergarten. He has learned so much and had such a good time. How lucky to get to watch him take that step.

The easter bunny brought computer games to Nate and Jules which they are currently playing. We are off to dinner with friends later. I hope you all are having a joyeous Easter as well.

Friday, April 7, 2006 8:06 AM CDT

Wow - Friday already. Time has been flying recently.

Nathan went to the clinic on Monday. His counts were really good. They should be since he is only on accutane and his last chemo was in January. His platelets and white count were still a little low a month ago though. He checked out just fine and will go back in four weeks.

Once again there was difficulty getting his accutane with the new federal program iPledge. Know we fully understand that even thought Nathan needs his accutane prescription every 28 days - the system only allows for every 30 days. So he could not get his prescription until Wednesday. I had to have his doctor rewrite for a 30 days supply. That turns out to be the maximim number of pills they will suscribe (120) without even more hassle. I just don't know why this program can't have 1. a male expemtion, 2. a child exemption or 3. a cancer exemption!

The neuroblastoma world lost one of its beacons of hope this past week. Nick Snow fought neuroblastoma for SEVEN YEARS before achieving remission. Once he did he remained cancer free for over three years. This is unheard of with neuroblastoma and his story has given so many of us hope. Sadly, he passed away from a bowel perferation and severe pancreatitis. Mostly likely, all his treatments played a part in this misfortune. He and his story will not be forgotten. From what I understand he was a wonderful sixteen year old boy.

Well- Nathan and Julia are clambering for breakfast! Guess I should feed them.

Saturday, April 1, 2006 10:11 AM CST

April Fools Day. Not a funny day around here. Nathan was diagnosed with cancer 3 years ago today. If only it had been a joke!

That said, we are so lucky that Nathan is here with us three years later. He was not even three years old when he was diagnosed. I wish I could say he had been cancer free for most of this period. At the same time, we are so lucky that even though Nathan relapsed last year, he is showing no evidence of cancer today.

So - I definately have mixed feelings today but I am so grateful to be able to look away from this computer and see Nathan playing with his baby sister....happy and healthy.

******************************
See March pictures - clink on link above in green or family web page link below
******************************

Wednesday, March 22, 2006 2:51 PM CST

Round 1 of accutane is officially behind us. Nathan did better than we expected. He had some peeling on his face but nothing extreme and no sores. We also did not see any evidence of the emotional effects some children have. He has two weeks off now.

Nathan has a bit of a cough and his ever-constant nose junk is a little tinged with color so I think he is fighting something. Considering how concerned his oncologist is about his sinuses I hope it does not turn into an infection. We haven't heard back from his oncologist about a referral to an allergist yet. I pretty much epected that. Not that he doesn't follow-through generally - but this doctor has a lot on his plate and contacting allergists is not his chief concern. I will call him today or tomorrow.

I have had two bouts of stomach flu and one case of mastitis in the last 10 days. Needless to say I am worn down! Julia had the stomach flu (once) and Lauren and Luke appear to be fine.

I took Julia and Lauren to the doctor today for Julia's 4 year and Lauren's 4 month check-ups. Julia is 35.5 pounds (50th percentile) and 41 inches (75th percentile). Lauren is 12 pounds, 6 ounces (25th percentile) and 24.5 inches (50th percentile). Both appear to be in good health.

Nathan and Julia are off for conferences/spring break for the next week and half. I am going to have to come up with some activities for them if we all do not want to go crazy!

I think that just about catches us up. Fortunately nothing new and exciting...just the way I like it!

Monday, March 13, 2006 9:43 AM CST

We just got back a very fun weekend in Chicago. We wanted to be there when my cousin Matt got his head shaved for St. Baldrick's. My cousin (and also one of Luke's close friends from colege) and his wife, Beth have a 6 year old daughter and 4 year old son. We stayed with them and the kids had so much fun playing together. We flew in Thursday evening and the event was Friday afternoon. Luke and Matt went down for the whole day and Beth and I drove all 5 kids (Yikes!) into the city to the irish pub in time to see Matt's head shaved. Nathan got to do the honors of helping hsave Matt's head which he thoroughly enjoyed. He also seemed to really enjoy the whole bar scene! A big thanks to everyone who donated. By the end of the event Matt had managed to exceed his goal of raising $5,000. Also a personal thank you to Matt from our family.

My brother and Luke's sister also live in Chicago and were able to join us at the pub and also for dinner on Saturday along with some other Chicago friends (Luke went to Northwestern University).

Saturday we had beautiful weather and the kids played outside for hours. All but Nathan got into the mud by the end of the afternoon. Nathan is too neat for that.

We arrived in Denver around 4:30 to a snow storm. We finally got home many hours later safe and sound. Nathan is off at school.

I think we will suspend travels for a few weeks now! We had this trip planned before the New York trip and so there was no way we were going to cancel but it will be good to stay off airplanes for a while.

Nathan is tolerating the accutane well so far. It has a cummulative effect and so I expect he will have more effects this week. He has been complaining that his lips feel bruised and his cheeks are somewhat red and bumpy. Overall - not too bad yet.

I will put some pictures from this weekend in the photo album page of this site. Also - keep a look out for February pictures. I am planning on putting them up on our family page in a day or so.

Monday, March 6, 2006 7:19 PM CST

We have recovered from our travels. This weekend we pretty much hung around resting.

Nathan went to the clinic today. They took some blood as a baseline before his accutane starts. His counts were pretty good but still a little on the low side. I would expect them to slowly get better.

Dr. Palmer had already gotten Nathan registered in the IPledge program which is a brand new federal registry for accutane patients. We will get the prescription tomorrow. Nathan needs 196 pills for two months....they come in 10 count packs - so the pharmacy didn't have enough.

My friend Jude asked (via guestbook) what the accutane is for. Well - normally accutane is used for severe acne. For Neuroblastoma it has been showed to mature immature cells. Since neuroblastoma is a cancer of immature nerve cells the theory is that if the cells are matured that they will not become malignant. There have even been kids whose bone marrow became clear of cancer from taking accutane. It is part of the standard protocol for neuroblastoma. Nathan was on it about 2 years ago. Nathan will have severe dry skin on his face - but hopefully that will be the only side effect. Nathan will only have to go to the clinic once every four weeks now instead of weekly!

I almost forgot to mention that Nathan's bone marrow aspirate and biopsies also came back clear! We are just waiting for urine results now.

I trimmed Nathan's hair up this weekend. Its texture is like wool and he has a severe receding hairline. Very odd - but we expected it to be odd again because it never grew back normal the first time. No big deal in the scheme of things. Things we would still like to resolve are the diarrhea and the runny nose. Perhaps one day....

Julia and Lauren are doing fine. Julia was overly emotional this weekend - which we expected. She is a challenging child - but these things that make her challenging will be positive traits when she is older. So we just have to grin and bear it. Every once in a while she is sweet. LOL. Lauren is getting SO big. She is rolling over now at only 3.5 months. She is very strong. She is still such a good baby and so sweet. She is very quick to smile and laugh. In fact she has a knack of laughing when others laugh and laughing at people's jokes. She is just the cutest thing.

I will update in a week or so and tell you how the accutane is going.

Friday, March 3, 2006 9:32 AM CST

We made it home! All the previous flights to Dallas had been cancelled but ours was not. It left a half an hour late (had to be de-iced). We had a 42 minute connection but our connecting flight was in the gate right next door and was running a half an hour late. So - someone was looking out for us.
********************************************
Thursday, March 2, 2006 12:25 PM CST

We are off to the airport soon. I am not at all confident we will get home with bad weather here in NYC and a short connection in Dallas for the last flight of the night. So - we will see.

We had a good talk with Nathan's doctor. He thinks Nathan should do 6 months of accutane and also do the trial whenever it becomes available. He said he hoped that would be before or by the time the accutane is finished. He has had 2 other patients who had a relapse like Nathan's that had the surgery and done 6 rounds of the chemo and 6 months of accutane. So far they are doing well - but they are fairly recent too. Nathan will continue scanning every 3 months. We will try to get in at the clinic to get the accutane prescription soon. There are very tight new regulations for accutane so it may be a bit of an ordeal.

Nathan and Luke got down to Times Square yesterday afternoon. That is the one thing Nathan has to do when we are here so I am glad it worked out.

Got to go get ready for our car to the airport. Wish us luck getting home.

****************************************
Wednesday, March 1, 2006 2:25 PM CST

Breaking news! I just got an email saying that the preliminary results of the CT and MIBG scans are clear! We are still waiting for bone marrow results but this is incredibly good news!

I'll add more later...one-handed here......

Tuesday, February 28, 2006 7:00 PM CST

We arrived safe and sound in New York last night around 9:00. We were slightly delayed with a maintenance problem and I was so afraid they would have to cancel the flight and we would have to find another way to get to New York by 7:30 in the morning. Fortunately it worked out.

We headed out in the very frigid weather this morning and, of course, just waited around the waiting room with nothing happening until 8:45. We could have used the extra sleep.

Nathan got his bone marrows done around 10:00 or so and then drank the contrast for his CT scan. In between he played in the playroom. After CT we had lunch and then he had his MIBG injection. We got back to my aunt's apartment around 3:30. We rested and Nathan played and then we had dinner with our friend Judy.

Nathan is now in bed and was in good spirits most of the day. We are amazed by the way he deals with all these medical procedures.

Tomorrow he has the MIBG scan at 11:00 am and that is all he has scheduled. We may go on some kind of outing tomorrow.

We will meet with Nathan's doctor at noon on Thursday and discuss results and the general plan for Nathan. After that we will fly home.

Lauren has done really well travelling so far. Sleeping is always the wildcard when travelling with the baby. Last night was good. Hopefully tonight will be as well.

Julia is reportedly having a good time with Tammy and her daughter, Brady. Brady is like a big sister to Julia and they have so much fun together. Tammy said that when she went to check on them last night she found them both asleep in Brady's bed.

I may or may not get a chance to update scan results before we get on the plane. I will update as soon as I can.

Friday, February 24, 2006 7:10 PM CST

We have a schedule for Nathan's scans. They are on Tuesday and Wednesday of next week. We will leave Monday and come home on Thursday night.

Julia is staying home and will be with Tammy. That was a very, very difficult decision and I am still having second thoughts but I do think it is for the best. We assume we will be going back to New York again and hopefully it will be a better time of year and we will bring Julia and have some fun doing things around the city. The forecast is for cloudy and 20s and 30s so we will not be doing too much galavanting about town. We will pretty much be at the clinic the whole time we are there anyway.

Please send your prayers and positive thoughts our way for CLEAN SCANS. Scan time is so very scary.

We will update again from NY.

Tuesday, February 21, 2006 4:01 PM CST

I just realized I forgot to update after Nathan's last appointment.

Nathan's counts had all gone up on Friday. I am so glad we had already made our decision not to do chemo before then.

We are still trying to get scans scheduled. They called us on Friday confirming his bone marrows for Monday (yesterday). Luke had to tell them that no way could we be there on Monday and it was also not it the range of dates we had given them. I think we will be going sometime next week though. We don't yet know who of all of us is going either. We still need to figure out travel arrangements and accomodations before we can decide that.

Luke's parents were here visting this past weekend. We had a wonderful visit and it went by way too fast. The kids just LOVE having their grandparents visit.

Both Nathan and Julia had playdates this afternoon. Nathan is feeling great these days.

That's about it around here. I will update when we know our scan schedule.

Tuesday, February 14, 2006 7:33 PM CST

We have a plan...

Given Nathan's low counts on Friday we emailed his NY doctor and asked him what his thoughts were on stopping the chemo, scanning in a week or two in NY and then starting the accutane. He emailed back that he felt that was very reasonable. So - that is the plan and they are working on getting Nathan scheduled.

Hopefully we will have the scan schedule very soon and can get working on the travel arrangements.

Meanwhile the kids both had Valentine's Day parties at school that they thoroughly enjoyed. I made some strawberry shortcake for dessert tonight and that is the extent of the celebtrations around here. Neither Luke nor I take much stock in this holiday.

I hope all of you had a nice day.

Friday, February 10, 2006 7:05 PM CST

More decisions...

I took Nathan to the clinic today and his counts were down a little except his ANC (helps measure immunity) was only 700. So - we are not going to be starting chemo on Monday.

Earlier today I emailed Nathan's NY doctor to see if he still wanted Nathan to be doing chemo while he waited for the trial and he said to make it 6 rounds (which means he has one more) and then for him to go on accutane (more on that in a minute). He also said they would be "very happy to see Nathan" for his next set of scans. So - I think we will plan to go to New York then and touch base. The timing of the scans is to be 2-3 weeks after the end of the next round of chemo.

I talked to Nathan's doctor about this. It is always akward passing along treatment recommendations from one doctor to another - just doesn't seem right. Initially we had all communication going from one doctor to another - but after a while it broke down and so Luke and I have had to take the initiative. We never discussed this change and I have NO idea what his local doc thinks of it - but he just didn't seem to be receiveing or sending emails timely enough and Luke and I felt too out of the loop.

He said that if Nathan goes for scans 2-3 weeks after the end of chemo that his bone marrow will not be recovered and that can affect the bone marrow biopsies. He suggested that Nathan just forgo the 6th round and go get tested soon - otherwise it would be April before he recovers. I know he really thinks that Nathan should not be getting any more chemo. He is very diplomatic and so he did not come out and say it but I could actually sense some of his annoyance today and that is very out of character for him. Regardless I know that as long as he doesn't feel a treatment is harmful to Nathan he will support our decisions. The relationship could become quite strained though. I have such great respect for his doctor and the way he has dealt with this situation.

So - we will send another email this weekend and see what his NY doctor wants to do and then Luke and I will decide.

About the accutane - this is taken in very high doses. He had it in 2004. It makes his skin very dry and can cause irritabilty. If the side effects are too difficult we will have to reevaluate.

I will update again soo - but I am beat and stressed out about all this.

Wednesday, February 8, 2006 10:39 AM CST

I thought I would update on how Nathan is feeling. I think we figured out what was wrong with him.

Julia woke up early Sunday morning throwing up and could keep nothing down all day. She is fine now - but I think that Nathan had his own version of this with diarrhea and we just didn't know how severe it was. That is a bit of a relief to have a possible culprit for how he was feeling.

Lauren is sick now. She has a fever and yesterday was grunting in pain most of the day. I took her to the doctor and we are assuming she also has a version of the bug. She is better today but still feels feverish. I have yet to subject her to the rectal temparture taking today.

I am also feeling somewhat sick. Nothing severe - just tired and achy (oh and last night extremely thristy - just like Nathan).

So - we just need to purge ourselves of this bug. We are going to try to make it to church tonight for a little while because Nathan is singing this Sunday and needs to go to choir practice. I am hoping Lauren and I feel better by then - but if not we will stay home.

Nathan goes to the clinic on Friday to have his counts checked. I am sure his doctor will be relieved to hear there was a bug in the house to explain Nathan's funky symptoms last week.

Friday, February 3, 2006 4:46 PM CST

*****************************************
Update Saturday February 4, 2006

Nathan is feeling pretty good today. Not 100 percent but much better.

I added pictures to our family web page for January. See link in yellow above or family web page link a the bottom
*******************************************

Nathan went to the clinic today. I was glad he already had an appointment because he had some strange things going on today.

He started getting tired late morning and then was shivering for no apparent reason. His skin was quite mottled and his hands cold. His temperature was normal.

He fell asleep on the way to the doctor's office but when he woke up he was a bit more chipper but still shivering. We just assumed his counts were low.

Turns out - his counts are a little better than last week. His hemoglobin is very high for him. In fact we suspect he may be dehydrated since that can cause counts to be artificially high. His doctor said that his symptoms could either be dehydration or blood infection. Since his temperature was actually only 95.5 we think he doesn't have a blood infection but we need to watch him to make sure he doesn't develop a fever.

Nathan started on Allegra last week in the never ending quest to stop his nose from running like a faucet. It didn't do squat but it very well may have helped to dehydrate him along with some diarrhea he has been having. He has been drinking like a fish all morning so we really do think the dehydration is likely (as I am writing this he is asking for yet another drink).

As far as the diarrhea, he is still on the flagyl and we are going to get a refill. I may have mentioned on here before how hard it is getting that filled with the flavoring. We have had problems every time. The last time we actually were told it would not be filled and they were too busy and too understaffed! Luke got on the phone with the store manager and it was all taken care of. I am not looking forward to finding out what happens this time. At some point we do need to address the causes of the diarrhe - not just the symptoms - and for that matter the whole runny nose thing - but since we are still battling to keep him alive and figuring out how to do that - I guess the other things will have to wait.

So - we are hoping he continues to feel better as we keep him hydrated. He goes back to the clinic next Friday.

Friday, January 27, 2006 10:19 AM CST

Hello - we have had a good and fairly uneventful week.

Julia had a good time at her birthday party on Monday. It was stressful for me preparing for it and I am glad it is done. Everyone seemed to have a good time and so that was good enough for me!

Nathan has continues to feel good. We had his counts checked yesterday and his platelets are beginning to drop. His white count and ANC usually follow - so I would expect to see them down next week. I talked to his doctor a little about future treatment. He said it would be reasonable to do nothing for a while since he is NED. I then asked him if he ever had a relapsed NB kid not relapse again and he said no. He then said that if we were playing the devil's advocate and saying it is inevitable that in theory our goal would be to give him as much time as possible before relapse. That is what Luke and I have been thinking all along (of course hoping for a miracle in which he won't relapse again) and so I think his doctor finally understands where we are coming from and why we want to continue treating him if we can do so in a way that is easy for Nathan. He tolerate this chemo so well that if he is to continue treatment we should most likely keep with it. However his doctor did say that round of chemo 5-6 weeks apart from each other are almost worthless. The frequency of the treatments are so important to expose each and every cancer cell at each point in its life cycle to the chemo. If Nathan was going by the prescribed schedule he would have started another round of chemo on Tuesday. Instead his counts are just beginning to drop and may not recover for another couple of weeks.

So - we need to discuss all of this with his NY doctor. We are going to email him to set up a phone call.

Nathan goes back to the clinic on Friday. Meanwhile we will continue with life as normal -just the way we like it.

Saturday, January 21, 2006 3:20 PM CST

Well - it has been a busy week! We are all enjoying a fairly leisurely Saturday at least.

On the family medical front - it was our dog, Ellie who got most of the attention this week. Monday evening she cut through 2 tendons on metal landscaping edging. She had to have surgery than night and now has a splint and a cone on her neck. She is not allowed to run, jump or go up and down stairs. She is almost 60 pounds and we have 4 sets of stairs in our house. She also suually spends all day outside in our multilevel yard. So - the poor thing is very constrained and we are having to walk her instead of let her outside. I won't even mention how expensive her surgery was!

We also had new brakes put on our van on Monday - they made a grinding sound all the way down the mountains last weekend. We were pleased to discover we could cram the three carseats in the backseat of our second vehicle (my first car - a 1994 Chevy Beretta) and could actually get ourselves to and from the dealership. Once Lauren is not in a baby carseat they probably won't all fit. I can't believe our family is that big!

Wednesday evening we all went to church for dinner and choir. Luke takes care of Lauren while the rest of us have choir rehearsal. We really enjoy dinner at church. Julia especially enjoys the ice cream bar!

Thursday Lauren had her 2 month check up and got 4 shots. She is 10 pounds 3 ounces and 22 inches long. She is 30th percentile for weight, 40th percentile for lenght and 25th percentile for head. She looks so big to me - but I guess she is still pretty little. She felt crummy Thursday night and Luke slept with her half the night and me the other half. She slept much better last night.

Friday we had a snow day, but I had an appointment so Nathan and Julia went to Tammy's and then I picked up Nathan and took him to the clinic. His counts have not dropped yet, but I am sure they will. I mentioned to his doctor about the NY trial still not starting up and he said he would think about some options for Nathan. I suppose Luke and I really need to talk to his NY doctor but for the moment are putting it off. Meanwhile Nathan feels good. His hair is really coming in now. This morning it was actually messy!


Nathan goes back to the clinic on Thursday for counts.

Have a good week!

Sunday, January 15, 2006 9:35 PM CST

**********************************************
Before we get to the update I wanted to tell you all that my cousin, Matt, is participating in St. Baldrick's again this year and will be getting his head shaved in honor of Nathan. St. Baldricks raises money for pediatric cancer research. For cancers like stage IV neuroblastoma reseach funds are extremely important since they have a very long way to go to increase the survival rates from the 40 percent they are now. To check out the details of the fundraiser and to sponsor Matt, please click on the banner above. Thanks!
******************************************
We just got back from a very fun weekend away but I will get to that in a minute.

Friday Nathan went to the clinic to have his counts checked. They were all still very good. We expect them to drop this coming week. We got some bad news about the vaccine trial in NY. It is now pushed back until at least March. For all we know it could be anout 6 months, year, never... so we will need to have some converstations with our local doc and NY doc about what kind of treatment Nathan should be getting meanwhile. We don't want to give the cancer a chance to recur, nor do we want to give Nathan chemo he doesn't need. It is not a good place to be - but there are MUCH WORSE places we could be right now so we just have to try to roll with the punches and see what we can come up with.

So - after the clinic we jumped into the van and headed up to my brother's place in Grand Lake. We met him and his family there.

Saturday we went to a small ski resort and put the kids into the ski class. Luke and Jason (my brother) skiied while Kristi (his wife) and I hung around taking care of Lauren and watching the kids.

Luke and I had pretty low expectations for Julia and Nathan. We worried about Nathan's stamina and also his mental toughness to stick with it and learn. I am pleased to say they both LOVED skiing and stuck with it - despite falls and hard work. We are so proud of both of them. I NEVER could have imagined I would ever watch Nathan learn to ski. It was so wonderful.



Today we went sledding down the hill behind the house. There were several feet of snow and it was a blast!



We had a great time!

Tomorrow there is no school and then Nathan heads back to the clinic for counts later this week. Lauren has her 2 month check-up and Julia will bring birthday cupcakes to preschool this week. I will update later in the week.

Saturday, January 7, 2006 11:40 AM CST

Just a quick update...

I added new pictures for December on our family web page. See link in red above or in links section below.

Nathan is still doing fine with the chemo. He had a good half-week at school.

Lauren is doing better with sleeping and with the bottle so that is a relief.

I will update again after next weekend.

Thursday, January 5, 2006 1:19 PM CST

Nathan started chemo on Tuesday. So far he is doing well with it. Yesterday morning he felt a little sick to his stomach but we gave him some medicine and sent him to school and he did just fine. His dose of the Temador is only half of the highest dose he had at one point. We are hoping his counts won't be affected quite as badly this time. Since his counts don't drop for awhile on this chemo he will not get them checked again until next Friday.

We now await word from New York on the trial.

Nathan started back up at school on Wednesday and Julia went to preschool today. The break was nice - but I am happy to have them back in their routines again.

Lauren has decided she doesn't want to go to bed until after midnight and also that she doesn't want Luke to give her a bottle. We are working on both of these things.

That's about all that is going on around here. We are keeping our fingers crossed that Nathan handles this chemo as well as usual.

Thursday, January 5, 2006 1:19 PM CST

Nathan started chemo on Tuesday. So far he is doing well with it. Yesterday morning he felt a little sick to his stomach but we gave him some medicine and sent him to school and he did just fine. His dose of the Temador is only half of the highest dose he had at one point. We are hoping his counts won't be affected quite as badly this time. Since his counts don't drop for awhile on this chemo he will not get them checked again until next Friday.

We now await word from New York on the trial.

Nathan started back up at school on Wednesday and Julia went to preschool today. The break was nice - but I am happy to have them back in their routines again.

Lauren has decided she doesn't want to go to bed until after midnight and also that she doesn't want Luke to give her a bottle. We are working on both of these things.

That's about all that is going on around here. We are keeping our fingers crossed that Nathan handles this chemo as well as usual.

Sunday, January 1, 2006 8:30 PM CST

Happy New Year! We had some very high highs and very low lows in 2005. Here's hoping for a calmer 2006.

We've had a pretty good week. I think Nathan and Julia (but especially Nathan) are ready for school to start back up. Nathan goes back on Wednesday.

Nathan's bowel problems are mostly gone. I think we will keep him of the flagyl for a little while because we have decided to give him one more round of chemo. We will probably back down on the amount of Temodar we give him. The Temodar is the chemo that keeps him counts down so long. Luke and I have mixed feelings about this round of chemo, but after discussing the side effects with Nathan's local doc we feel that it is reasonable to give him one more round right now. If the trial does not open in January then I think we will have to have a good talk with the doctors in NY to understand what treatment they want and why.

So - Nathan goes to the clinic on Tuesday and will most likely have chemo at home through Saturday.

Now for the non-medical stuff.

Luke and Nathan are going to a Denver Nuggets game tomorrow night, courtesy of the Starlight Starbright foundations. I think Nathan will really enjoy the outing with his Dad. Julia is happy that the "girls" will all stay home together.

Julia is busy planning her birthday party (22nd). It sounds like she wants to do crafts at home with some friends (we did this last year) and it is to be a Strawberry Shortcake theme. I can't believe she is turning 4!

Lauren is such a good baby! She is now sleeping in her own room in her crib and has slept through the night 3 out of 4 nights (10pm - 6 am). She is so laid back. She has the cutest smiles. I can't resist showing you a picture.



We wish all of you and happy and healthy 2006!

Sunday, December 25, 2005 7:46 PM CST

Merry Christmas!

We are having a very nice Christmas. The house is littered with toys, our bellies are full and we are all healthy and happy. We spent all morning opening presents and putting them all together. Now to find a place to store them all....

It has been awhile since I have updated. Nathan's diarrhea has continued and it got really bad this past Thursday and so I took hom to the clinic on Friday (he had been there on Monday - all his counts were very good). They took a stool sample and are having him tested for several things, including a parasite. Meanwhile he is on flagyl - but not every six hours so we do not have to give it to him in the night. He does seem better today. It will be interesting to see if anything comes back on the stool culture. I doubt anything will. Nathan's oncologist is going to talk to his GI doctor (who is in Denver) and see what his thoughts are.

We got an email from Nathan's NY oncolgist wondering his status. We told him of the clean scans and he told us that the vaccine triual would almost certainly be running by the end of January. He wants Nathan to have one more round of chemo while he is waiting. Luke and I need to decide if we want him to or not. We will also consult his local oncologist to see what his feeling are on it. His NY doctor said that his platelets could be as low as 30,000 while doing the trial - so low counts from chemo should not keep him from participating.

Nathan's weight is up and seems to be increasing. He looks great. His hair is growing in and he seems like he has some substance to him and so he looks so good.

Luke's mom and sister are here for Christmas. The kids are just loving their company. Unfortunately Luke's dad could not come. He has been sick for weeks and he really felt he just needed to sleep for a few days to get better.

Nathan and Julia were out of school this past week. Even though we went to Chuck E Cheese and Chick Fil A to play they seemed a little bored. This next week might be a little long....

Lauren is doing well. She is smiling a little bit. Not often enough for us to catch on film yet. She is a very good baby. One very good thing she is doing is taking a bottle. Neither Nathan or Julia ever took a bottle despite repeated attempts and every bottle known to man. Luke is bottle-feeding her every night around 7 or 8 (second to last feeding) and so I am free to do things in the evening - such as go to choir practice. I will start attending choir again soon and I am looking forward to it.

I will update again at the end of the week and maybe I will remember some things I forgot to mention this time. Meanwhile I hope you all enjoy the holidays.

Sunday, December 18, 2005 9:43 AM CST

We opened the paper this morning and found our family on the front page of the metro section. We went to a Christmas party yesterday at Nathan's clinic. He got to see Santa and get a present as well as play in the playroom. Nathan was the only bald(ish) kid there and so I think the paper wanted his picture. The picture and article text follow.



December 18, 2005

Kids with cancer get visit from Santa


By R. SCOTT RAPPOLD - THE GAZETTE

What does Anna Stahl want for Christmas? “Animals!” chirped the 5-year-old. That’s what she told Santa, too.

But if she gets any animals this year, they’ll be stuffed. Anna suffers from leukemia and though she is healthy now, her parents can’t risk the germs a new pet could carry.

In fact, were it not for a Christmas party at the Cancer Center of Colorado Springs on Saturday, she wouldn’t be seeing Santa this year.

“Her white (blood cell) counts are so low, we can’t take her out in public places,” said her mother, Connie Stahl. “As long as we can keep her from getting any other illnesses, we’re on the uphill side.”

The Christmas party, held in the sterile, filtered-air environment of the center on Fontanero Street, gave about 85 children — most of them cancer patients or their siblings — a chance to sit on Santa’s lap, to have milk and cookies, to get some presents.

A chance to be normal.

“They can run around like nothing’s wrong,” said Darlene Sowa, who organized the party. “They can be themselves and play and not have to worry about germs.”

It’s the third year of the event. Last year, so many children came that many became exhausted waiting an hour to see Santa. So this year they had two Santas in separate rooms, a fact not divulged to the kids. The gifts were donated by Oracle Corp. employees.

“They seem very happy to be here,” said Santa Claus, aka Michael Decker, director of the Pikes Peak Area Agency on Aging. “Nobody’s been afraid to sit on my lap.”

“It’s neat,” said 6-year-old Alex Minton, who also suffers from leukemia.

“We don’t go to the mall,” said his father, George Minton.

They were in Cody’s Camp, a play area for kids waiting to receive chemotherapy across the hall. It has slides, computers, an area to make crafts and an indoor tree house. It’s as close to a playground as many of the children ever get.

“If he has to come here and he knows he gets to play before his visit, it makes it a little easier to come,” said Susan Gentry, whose son Nathan suffers from neuroblastoma, a childhood cancer that affects the nervous system.

“I don’t really know what I want for Christmas,” said Nathan, 5, waiting to see Santa. His head was mostly bald from recent chemotherapy.

He looked nervous but smiled when Santa handed him a teddy bear and a giftwrapped box.

His cancer is in remission, his parents said. Santa’s elves overheard.

“Merry Christmas,” they said.

Wednesday, December 14, 2005 1:38 PM CST

There is not too much to update but i thought I'd better udpate while I had two free hands.

Nathan went to the clinic on Monday. Most of his counts continue to improve. His hemoglobin was down, but he receives medication to boost that. We went over all the scan reports. Besides the fact that they showed no cancer the most interesting thing was that his cat scan shows that he still has some changes from his surgery in August. I hadn't really thought that his body is still healing from it - but I guess it is. His doctor will send all the scan results to his NY doctor and then I guess we'll see what he finds out. His local doctor is out next week and Nathan probably won't go to clinic the following week - so I think it will be a few weeks until we have a game plan for Nathan. This is fine. His counts have only just recovered so we will just enjoy the holidays.

Nathan is having some bowel troubles again. Luke and I want to get him on a low dose of flagyl to see if that can heal him. Nathan's doctor is going to cusult with the GI doctor and see what he thinks. We are also going to start Nathan on a nasal spray. Nathan has the worst chronic runny nose possible. It literally drips down on his lip 100f the time. He has had this problem for a few years and it gets better and worse again and is currently at its worst. We have tried other drugs so we will just keep trying.

As far as non-medical stuff goes things are going well. I took Lauren in to be weighed this morning. She is 8 pounds 3 ounces. She gained a perfect ounce a day since her 6 day old check up. She is starting to be awake alot more. So - she is becoming more work, but I don't mind it at all. She is so precious.

Sunday we attended a Christmas party put on by Candlelighters. It was at a hotel and they did family pictures, entertainment and food. They also gave out presents. We were expecting one present per child, but they brought home a garbage bag full! Part of the entertainment was appearances by people in full-blown Star Wars costume. These were professional costumes and the kids love them. When it came time to give out the presents Santa had fallen ill and so, believe it or not, they had the kids sit on Darth Vader's lap instead and he promised to pass on the wishes to Santa. Nathan and Julia refused to sit on his lap..I don't blame them!

They have another Christmas party on Saturday where I know they will get yet another present and see Santa again. This one is put on by an association involved with the clinic.

This is the last week of school until the New Year. I can't believe Christmas is coming so soon. I guess I need to finish my shopping! That is easier said than done with a newborn!

Speaking of Lauren - she is needing my attention now.

I will update again after Nathan's clinic visit next Monday.

Thanks for visiting.

Friday, December 9, 2005 7:51 PM CST

Breaking news......

All of Nathan's tests and scans are clear of cancer!

This is what we have hoped and what the doctors have assumed is the case but it is so nice to have the official word.

This does not mean he is off treatment - chances are very high the cancer will come back so our focus now is doing some treatment that may help prevent another recurrance. We will be figuring that all out in the weeks to come.

Meanwhile we are just so happy that Nathan is doing so well right now.

He goes back to check his counts on Monday.

Friday, December 9, 2005 5:17 PM MST

****************************************
No news is - well... no news. I left a message for Nathan's doctor asking him to check the reports before he left for the weekend and so since I haven't heard anything I have to assume they are not in yet.

****************************************
Wednesday December 7, 2005

Bone marrow results are in and they are clean. Also we MAY have been told MIBG is clean. The tech talked to the radiologist and she told him that she was pleased and his scan was clean - but it is very strange that a Radiologist would give results to a patient - esp. second hand - so we are waiting to see what her report says but so far so good...

*****************************************
Sunday, December 4, 2005 12:10 AM CST

Just a quick update on Nathan's counts. They were all up. His hemogobin was actually in the normal range and his ANC was 1000 which means he is not neutropenic anymore. So - it looks like he is recovering from the last round of chemo finally (started on 10/31).

Here is Nathan's scan schedule:

Tuesday - Bone marrow biopsies and aspirations at 11:30
MIBG injection at 3:00
Wednesday - MIBG scan - 9:00
Thursday - CT scan and xrays at 11:30

He could in theory go to school for a while on Tuesday - but he will be NPO (no food or drink) and so I think it is too risky thathe might forget and drink some water or something. Thursday he will be drinking oral contrast for his CT scan at 9:30 and 10:30 so there is no point in him going to school that day either. So - he will have to miss 3 days of school.

Luke will be doing the majority of these scans and tests with Nathan. I figure I should stay away from the radiation while nursing and we haven't yet tried a bottle on Lauren yet so I will need to be with her. We will probably have to keep Nathan from holding Lauren after his injection since he does emit radiation for about 2 days.

I think we will have most of the results by Friday.

Nathan will not go to the clinic since he has having all his tests. I will update again midweek.

Check out the November web page for new pictures. See the link above in green or below for the family web page

Wednesday, November 30, 2005 10:21 PM CST

Just a quick update on Nathan's counts. He went in on Monday to check them. They are all slightly better except for his platelets. He did have a nosebleed last weekend and so we are going back in on Friday to have them checked again to make sure he doesn't need a transfusion. He is feeling pretty good despite his counts.

Scans are coming up already next week. I can't begin to explain how worried I am about them. If he has any new disease he will be in a very bad position. It really stinks to be having scans right before Christmas and right after Lauren has arrived. It will be very difficult to handle a bad outcome right now.

Please send all your thoughts and prayers our way....

I will update this weekend about Friday's counts.

Saturday, November 26, 2005 8:40 AM CST

Hello! I hope you all had a wonderful Thanksgiving.

I meant to update many days ago. I find the only time I am using the computer is when I am nursing Lauren and have only one hand so I can't type.

We had a very nice Thanksgiving. My parents arrived last Monday and are still here. My brother and his family drove down for the day and we had the usual Turkey fare.

Nathan is doing well. He went to the clinic last Monday and we found his counts to be at their usual position after this chemo. His platelets are low but not at transfusion level and his ANC is 700 - which is a low immunity but not so low he can't go places. His hemoglobin is actually pretty good and he is no where near transfusion level. The medication we have Nathan on seems to have healed his bowel problem and he is doing a great job taking it - especially being woken in the middle of the night to take it. He goes in for counts again on Monday.

We got an email from Nathan's NY oncologist wanting to know his status. January is the latest word on the vaccine trial opening. We are hopeful that this time frame will actually come to be. Of course - we need to get through his upcoming scans first. We need those scans to not show any disease or at the worst very minimal disease. It is frightening this time because we have NO CLUE what these scans may show. There could be anything going on inside Nathan right now and we will just have to see what they show.

Nathan has good energy these days. He has been practicing riding his bike and has made big strides. He has fallen several times and is not getting upset about it and getting right on. Don't get me wrong - he still has training wheels. His gross motor skills are something that he lags in. It occurred to Luke and I after one of these sessions that bike riding with low platelets is not the best thing medically - but best for Nathan so we are not going to worry about it.

Lauren is doing great! She has been a little jaundiced but getting less yellow. She had gained almost all of her birthweight back by day 6 and so her doctor was very pleased. She is sleeping in good chunks at night so I am getting up with her twice - which is not bad for 10 days old. She is such a doll! I am enjoying having a newborn so much. Nathan and Julia are still very happy to have her and are always checking on her and wanting to hold her.

So - all is good around here...

Thanks for checking in.

Thursday, November 17, 2005 10:29 AM CST

************************************************
UPDATE SUNDAY NOVEMBER 20, 2005

I realize I left you hanging about Nathan - sorry!

He has beeen having some bowel troubles. We think he has C Diff from the antibiotics he was on and from being immuno-suppressed. It causes him abdominal pain, diarrhea and gas. He has only had a few episodes of pain, luckily. We put him on a medication that he has to take every 6 hours for 10 days. At least we are already awake in the middle of the night to get up and give it to him. You may recall he had 6 months of bowel troubles in the past that were really debilitating. He never tested positive for C Diff but it wasn't until we put him on the medication that he got better. So - that is why we are treating him even though we don't know for sure.

Nathan will have counts checked tomorrow - I will update more then.


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

UPDATE FRIDAY NOVEMBER 18, 2005
We are home! We got home last night and Lauren and I are doing well.

Nathan is having a few issues which I will go into later but I wanted to quickly post some pictures and then I need to feed Lauren.







I'll update more later.

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

It's a girl!

Luke here. Yesterday evening at 5:13 MT we welcomed Lauren Elizabeth Gentry into our family. Susan and Lauren are doing great! We may all be able to be home tonight, but hadn't worked all of the details through with the pediatrician and Susan's doctor. Keep your fingers crossed that all five of us will be here at home tonight.

I stayed with Susan and Lauren and the kids stayed with their sitter (Thank you so much, Tammy. You are always there for us). I'll be getting the kids shortly so that they can meet their new sister.

Pictures and details will come soon.

Lauren weighed 6lbs 15ozs at birth and was measured at 19.5 inches. These are almost exactly Nathan's stats when he was born.

I'm so excited and happy to get the kids and have all five of us together for the first time.

Monday, November 14, 2005 6:38 PM CST

Nathan had a clinic visit today. His counts were somewhat better than I expected. He had been pretty emotional, tired and his nose was seeping a little blood-tinged mucous. His counts were all down but his white counts are still in a good range with an ANC of 1800. His platelets are low but not in transfusion range. I was a little concerned about that so it was a relief that he does not need one. His weight has gone back up a pound. We were all pleased about that!

Like I said, he has been pretty tired and emotional. It is something we do see with declining counts. He did go to school today and had a really good day - so I think when he came home he kind of let down. He had a major crying fit about not wanting anything to eat that we had available to him.

The next clinic visit is set for Monday - but we are to keep an eye on him and bring him in for counts later this week if it seems like they may be getting too low. By now we know some of the signs.

So - that is it for now. I am hoping to have this baby in the next week - so send some labor vibes my way!

Susan

Saturday, November 12, 2005 11:20 AM CST

I forgot to update yesterday...

Nathan is doing so much better. He went back to school on Thursday. He went to have his hearing tested and see the ENT. His hearing is stable but the ENT looked in his nose and said he has sinusitis. He reccomended antibiotics but wanted to defer to Nathan's oncologist. Since we were only a few minutes away we dropped by the clinic and decided to put him on antibiotics mostly because his body probably can use all the help it can get because of the weight loss.

The latest word from NY is that the trial is still awaiting final approval. So - we are not sure what the next step will be for Nathan. He has scans Dec 6,7 and 8. I am already getting anxious about them. I dreampt about them last night. It would have been a little better to do them a week sooner - but we really needed to make sure the baby is here before they get done.

Nathan was definately happy to go back to school. He was getting tired of hanging around the house. They had friends to play with yesterday too - which is always good. We have a "project" group on Friday afternoons. There are four of us moms and we rotate whose house we go to each week. This time it was my house and we cleaned while the kids played. It is so nice to start the weekend with a clean house.

My doctors appointment was fine. I have dilated some more and lost a pound - so those are good signs that the baby is thinking of being born soon. I am really hoping for next week sometime but I am not holding my breath.

Nathan goes back to the clinic on Monday. We have a quiet weekend planned at home this weekend. I will update sometime after Monday.

Tuesday, November 8, 2005 4:32 PM CST

Well - Nathan has been under the weather. He was OK over the weekend until he threw up Sunday night. He had been having alot of loose stools which is normal for him - especially post-chemo. The vomitting also has occurred post-chemo too. Monday morning he woke up and was extremely emotional and coughing. I kept him home and he was pretty lethargic all day. Starting last night he began having frequent diarrhea and threw-up again. I went ahead and took him in to the clinic today instead of tomorrow. The doctor highly suspects he as a virus that is going around - and that it is not chemo related. His counts were all a little lower but his immunity is still in a good range. His platelets are dropping which we expected. They are still OK at 53,000. That is low but not tranfusion level. He has lost 2 pounds in about a week. I took one look at him this morning and could tell. He has been eating pretty well, but the amount of stuff moving through him is too high. With his very frequent diarrea today we are only able to give him certain foods which isn't helping matters. I am trying to get him to drink alot. He wasn't too dehydrated but he will get that way fast if he won't drink. As I write this he is complaining to me about being tired of drinking. I keep telling him he will have to go spend a few hours in the clinic getting fluid if he doesn't. We could have done that today but I thought I would see how he does at home.

I imagine he will stay home tomorrow again then I am hoping he is well enough to go to school by Thursday. He has an appointment with the audiologist and ear doctor on Thursday. He goes back to the clinic on Monday. We didn't see his regular doc today so we don't know if there is any new information on the vaccine trial. I left him a note asking him to call me this week if he does hear anything.

No baby yet for me...I am hoping for sometime after next Monday. I go back to the doctor this Thursday for my 38 week appointment and I am hoping that when they check me I have dilated some. I had quite a few contractions on Sunday so perhaps things are moving in the right direction.

I will update again at the end of the week.

Friday, November 4, 2005 7:12 PM CST

TGIF!

Nathan went to the clinic today. Luke met us there since it has been ages since he has been. Nathan's counts were good EXCEPT platelets. We just have to hope they do not go so low he will need a transfusion. With him starting chemo with them on their way down there is no telling what they will do.

We got to hash some things out with Nathan's doctor. He had not gotten to talk to Nathan's NY doctor but had just received an email from him asking how Nathan is doing and what his status is. So - he will respond and we will see what the status of the Vaccine trial is. We decided that Nathan needs to be scanned so we can start to compile a list of treatment options for him. We will wait until the first week of December so we are not scanning as we wait for the baby to come. It is going to be difficult to figure out what to do next. Nathan's doctor commented that everyone feels better when there is treatment going on - but at the same time you have to be selective about it and there has to be an end point. So - I guess we will see about the trial and see what scans show and go from there.

Nathan had chemo in the clinic today and we decided not to give him his last dose of oral chemo tonight based on his platelet counts. Luke stayed with Nathan at the clinic. Nathan definately enjoyed having his Daddy with him!

The only other thing going on with Nathan is a cold - but he is handling that fine and still has plenty of white blood cells to fight it.

I also went to the doctor today. I had gone on Tuesday afternoon and was feeling cruddy. I was flushed, dizzy and my blood pressure was quite high for me. So - they took some blood and told me to take it easy and to come back today. The next day I came down with a nasty cold which explained why I was feeling so bad. Today my blood pressure was much better and my bloodwork was fine. I haven't been able to sleep much and my cold is making this end of pregnancy harder - but all is well pregnancy-wise so that is good! I am due in 20 days.

Nathan goes back to the clinic on Wednesday to check counts and to the ear doctor on Thursday. I go back to the doctor on Thursday as well.

We have no big plans for the weekend - which is good since Luke and I are both exhausted.

That's about it I think....I will update again on Wednesday or sooner if anything changes.

Monday, October 31, 2005 8:58 PM CST

*** Check out link above in orange for our October family pictures ***

Happy Halloween!

It has been a good - but busy day. Nathan went to the clinic right after school. His counts were all still good except his platelets had dropped quite a bit - but still at a number that it is OK to do chemo. It was a difficult decision whether or not to start chemo because if he platelets are dropping and he is starting chemo then they may go quite low again - but at the same time - if this is going to be his last round of chemo it is probably better just to go forward and if it takes a while for his counts to rise up it is OK. So - we decided to go ahead with it. He will go back Friday and have counts checked and I will get to talk everything over with his regular Oncologist who has been gone. We may decide not to give him Friday's dose of the Temodar if his counts are way low.

We didn't get home until almost 5:00 after the chemo so we hurried up and had dinner and went trick or treating. Nathan and Julia had a ton of fun. We actually had "good" weather for Colorado. I am not exaggerating at all when I say that all but 1 or 2 years we have been here it is either iced or snowed on Halloween - so to simply have a little cold weather but dry was so nice. Now - there was snow on the ground this morning - but it cleared up by tonight. After trick or treating we drove over to trick or treat at one of Nathan's preschool teacher's house. Nathan so loved having her last year and he misses her.

They are now tucked in bed and will be asleep quickly (I hope).

There is nothing really interesting to say about our weekend. We stayed home mostly and baked halloween sugar cookies and carved pumpkins. Julia wanted a happy pumpkin and Nathan wanted a scary one. Neither of them wanted to help scoop the pulp out. Julia kept referring to the seeds as "oats".

Both of them had halloween parties at school last week. They got to wear their costumes numerous times and are now happy to have them for dress up. See the photo page for more pictures.

So - Nathan will have chemo the rest of the week and go back on Friday. I suppose we will just be taking it easy in the afternoons while chemo is going. Tomorrow I have to go to the doctor in the afternoons so they will go to Tammy's. She gave Nathan chemo once last time so I am able to leave him. Thanks Tammy! Not everyone would be willing to take that on.

I hope you all had a happy halloween too and I look forward to seeing pictures of your kiddos too - my email address in on the page.

Thursday, October 27, 2005 7:43 AM CDT

*******************************************
Update - Thursday afternoon...

I was expecting this and I can't tell you why - I had been having thoughts that Natan's urine sample would somehow go wrong and we would have to repeat it. I don't normally think this but I really have been expecting it this time. So - I just got a call from the lab at the hospital that they messed up his sample and it is ruined. The woman was very apologetic and I could tell she had gotten a reaming from the clinic staff and also that they must have told her she would have to break the news to me.

Instead of being mad - I am just resigned to it - I just knew something would go wrong. I am not usually that type of person but I guess I had some kind of intuition this time. Anyway - we will not be redoing it any time soon. He is due for other scans soon anyway and so let them do those if they really want to know his status. I have recently been swinging back to wanting him to have some scans again to see where his disease stands. So - I will talk to his regular onc when he gets back and we'll see what he wants to do.

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

Nathan had his weekly appointment yesterday. His counts are great - very similar to the week before. So - this leaves us wondering what they are doing. Have they gone done and back up? Are they still going to go down? Will they remain unffected this time? He is due to start chemo on Monday. He will go get his counts checked. If there are signs they are going down then he will not start it. If they are still good he will start another round. It is kind of nerve-wracking to think of starting another round without knowing what his counts have done - but it doesn't make sense to delay the chemo waiting to see if his counts will stil go down. If they are still going to go down it is most likely we will see that by Monday; which is 3 weeks from the start of the last round. I have no idea where the time has gone since that seems like it was just last week or something.

He gave a urine sample for the test that detects neuroblastoma. We were so glad to get that over with. It caused Nathan some emotional distress this week. His foods were so restricted that we had trouble feeding him. In the past it has been no big deal and he hasn't really realized it. Now that he is in school we had to tell him about it to try to keep him from eating other food in school. We also had to try to find a snack without vitamin C, vanilla, banana and chocolate to send with him to school. He likes to bring fruit so that was hard. So, basically since he knew of the restrictions this time - he let himself get all upset about it. It was quite a pain. I pinned a note to him on Monday for his teacher. Apparenty she sent them to library and they had M & Ms for a lesson on patterns. His teacher walked in right when the library teacher told them to go ahead and eat them. Nathan had only had one - but it was upsetting to him and his teacher was a little frantic I think. So - like I said before - we are SO happy to have that over with for the next 3 months or so. We should have results sometime next week.

Julia has her school halloween party today and Nathan has his tomorrow. Julia is a unicorn and Nathan is a fireman. They have had a few opportunities already to do some things in their costumes and they are very cute. I will post pictures from Halloween next week.

I had my appointment - all is well with the me and the baby. I will go back next week. I got the paperwork about going to labor and delivery and am free to have this baby whenever he or she wants to come. I am hoping for the week before Thanksgiving. Julia and Nathan were both about a week early so I would really like the same to happen this time. I have had two very vivid baby dreams this week and the baby was a girl both times...so maybe a girl? We'll see....

Thursday, October 20, 2005 5:00 PM CDT

Sorry for the delay in updates - we have been pretty busy the last few days.

Nathan went to the clinic yesterday (Wednesday) afternoon and his counts are really good. The chemo definately hasn't affected them yet and they have definately been recovering. It was a relief to see them all at almost normal ranges. His doctor commented that THIS time we wil for sure wait the full two weeks at least before we start chemo - I think he is pretty convinced he made a mistake starting Nathan on round 2 early and that his counts just don't drop right way with this chemo.

His sed rate was back to normal. This is the last test to fall back to normal that shows inflammation. It had been still too high three weeks ago. So - whatever it was that was affecting his thigh did seem to heal. We'll never know what that was about. We could do without these mysterious things.

Next week they will send off his urine to look for neuroblastoma markers. Monday and Tuesday we will have to carefully monitor everything he eats. It is so hard to remember all the restrictions (vanilla, banana, vitamin c, and there's more - I always have to look it up) but until you do this you don't realize how many food items have these things in them! His doctor will be gone for a conference next week. He is going to try to catch Nathan's oncologist in NY (who should also be there) and see if he can learn anything more about the vaccine trial.

As far as non-medical - things have been pretty good. Monday we took it easy and just hung around the house. I think Julia was boren - but I knew the rest of the week would be more busy and so I didn't want to go out. Tuesday, Nathan, Julia and I went for a playdate at a classmate's house. I managed to keep Julia somewhat occupied so that the boys could get some time playing without her. Next time he will go alone. He also had a playdate this afternoon at a different classmate's house and I just dropped him off. Julia was VERY upset. She has been having a hard time again lately and her brother going off to play without her was about the worst thing she could imagine. The flip side is she and Nathan have been fighting so much that I knew she would actually be happy to have some time just with me. She and I colored and painted the whole time. Julia seems to be having some emotional problems again and we are at a loss at how to help her. She is purposfully nasty or does things just to make others mad. When she does it to Nathan he walks away and tells her he won't play with her anymore - a which point she gets hysterical crying "I want my brother!" It is as though she is determined to be miserable and make others around her miserable and get negative attention. Anyway - things are only going to change soon - so I guess we'll see how it goes...

As far as I go - well - I guess I am just 8 months pregnant and all that goes along with that. I am just in that large uncomfortable stage (even if I don't look huge -my body thinks I am!). I played tug of war with my wedding rings in the middle of the night the other night and they are now off for a while. With Nathan they came off way early and with Julia I never had to remove them at all. It is all temporary and only a few weeks left. I go back to the doctor on Tuesday and will be going weekly from then on.

Lastly - but not leastly - there is Luke - but since he is neither myself nor my child I do not feel it my place to try to describe what he is up to - other than work as usual. He did take a day trip to Utah on Monday, but that should be the last of his travelling for a long while. Maybe he will chime in sometime - with me doing most of the medical stuff this website has turned into something that seems to be my domain - but perhaps he will chime in sometime if he has the desire.

Thanks for checking in on us...we appreciate it.

Sunday, October 16, 2005 8:21 PM CDT

Hello - Hope you all had a good week and weekend. Nathan handled the chemo very well and all he showed was a little extra crankiness and tiredness. With snow and parent-teacher conferences last week Nathan only went to school one day. Unfortunately I didn't even get to talk to his teacher because she was home having contractions..she'll be back in January. I did get to talk with the sub so that was good.

Friday I took them swimming. They had been wanting to swim for so long and they had a blast! In order to do this I had to remove his port needle and put in a new one on Friday. I had done it one time at the clinic with the nurse watching. I am happy to report it went very well and Nathan approved.

Saturday we met up with some friends at a pumpkin patch. They were picked through at that point but they had carted in some pumpkins. We also picked a few apples. They drive you out to the field on a trailer hooked up to a tractor and so the kids thought that was a lot of fun. It was a very nice time. Unfortunately for me I started having some contractions after all that activity so I spent the rest of the day lying around. They stopped at that point so I guess I need to take it a little easier from here on out....easier said than done.... Anyway - check out the photo page for some pics.

Today Nathan's choir and the first grade choir were singing at church. They sang all three services and Nathan thoroughly enjoyed himself. He did a great job and I can't begin to tell you how wonderful it was to see him up there singing. I was in the choir loft for the first two services and couldn't really see him but Julia and I popped int the balcony to see him for the third service. Luke helped out with the kindergarteners for all 3 services. They hadn't really lined up any parents after the first one and he saw they needed help. He is SO GOOD with kids - and enjoys it. I am not sure I could have done it!

Nathan will not go to the clinic until Wednesday. It has been nice to have more than a week off from it.

Getting back to singing...they are in bed right now - but undoubtably Julia is up in his bunk and they are both singing...it is so sweet to hear. We have found that they play up there every night when they go to bed and then Nathan tells Julia when it is time for her to get down. They put away any toys they have in the throw up bin in his bed and go to sleep.

So - I will update again on Wednesday. He will just be getting counts done and we wouldn't expect them to be down too much yet - but who knows after the last round....

ps - the new pictures is his school picture

Monday, October 10, 2005 6:39 PM CDT

***************************************
Update Tuesday, October 11, 2005

I just wanted to update that my appointment went fine. Everything is exactly where is should be as far as size, weight gain and the baby's position.

Nathan is doing well with the chemo so far. We woke up to him screaming this morning. We thought he had gotten sick but he was upset at Julia for having left their room before him. Luke layed down with him and Nathan had lots of questions and comments about chemo and his doctors. He seems to be working through some emotions about starting chemo again. I am sure he is wondering how much more he will have and what will happen next but we don't have an answer for him. I have told him that we are waiting to hear when we are going back to New York - but I think that is unsettling that we don't have a plan and that he does not know what is coming next for him. Unfortunately there is not much we can do for him. After he and Luke talked for awhile Nathan perked up and said he was going downstairs to get his milk. So I think he felt better getting some of his thoughts off his chest.
***************************************
Chemo has finally started. Nathan counts were up just enough to begin chemo. This time he is getting 80mg of the drug that supresses counts. The first time he got 100mg and the second he got 120mg, thinking that the 100mg could have been too low. Hopefully this 80mg dose will not keep him down for more than a couple of weeks - instead of 6!

Nathan's weight was up again and he is really looking robust (just pale!).

I thought I'd share a picture of the fun thing the kids got to do today....

The funny thing was that when we got downtown (8 miles away) to the clinic there was no snow there at all. We always get a kick out of the weather in Colorado. This was fairly late for our first snow and it was quite a big one.

Nathan's school was on a delayed start - he could have gone in for 1 hour of school but I kept him home. He and Julia were having such a good time playing this morning and I decided to let them play and avoid being out in the weather.

Nathan will have chemo at home the rest of the week in te afternoons and go back to the clinic next Wednesday.

There are teacher conferences on Thursday and Friday so no school for either child. On Thursday they will go to the sitters for the day. This is mainly because Tammy's daughter is out of school too and they all have such fun playing and Nathan gets to go too - which dosen't happen very often anymore. Not that I mind the free day....there won't be too many more of those before the baby. The last time Nathan realized I would have free time he was worried I would be lonely without him and Julia. I tried to gently explain that I enjoy my free time! I do have a conference with his teacher Thursday afternoon. I also have a doctor's appointment for myself tomorrow morning. It is just a routine check - every 2 weeks now. I may need to send them to Tammy's tomorrow since I suspect schools will be delayed tomorrow too so I won't have the time with them at school and I am not sure I would want to bring them with me to the doctor.

So - I am keeping my fingers crossed that Nathan tolerates chemo as well as the prior rounds. I'll update later in the week.

There are new pictures for September on our family page - see link above or below.

Tuesday, October 4, 2005 4:16 PM CDT

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

Update: Thursday October 6, 2006

I just wanted to let you know that the kids had a good visit at the dentist. I was surprised to see that when Nathan opened his mouth he had some of his 6 year molars back there behind all his shiny silver teeth! We got some good news also. They did a panoramic xray of his mouth and ALL of his permanent teeth are there! The chemo can affect formation of these teeth. His 12 year molars are just buds at this time - but they are there and growing and might at worst be a little smaller than usual. I will give the dentist credit - no comments to me about the kids brushing habits...I guess their teeth looked OK. I just have an issue with him since he pretty much rebuts that all of Nathan's decay came from chemo - when it is clearly a documented late effect of chemo and we know lots of other NB kids with the same problem.

So anyway - a good visit.


*************************************
Nathan had his counts checked yesterday. All his counts are better except his white blood count and ANC. He is still slightly neutropenic. When I say better - I mean up - no where near normal. It is looking likely that they will be high enough to start chemo on Monday so that is our curent plan. The first round Nathan had 100 mg of Temador. The second he had 120 since he seemed to tolerate the 100 so well. This time he will only have 80. His oncologist says it is much more iportant to keep on schedule with the chemo that do full-strength. By the time we start round 3 on Monday (IF counts are indeed good enough) it will have been long enough to have done 2 rounds. I was relieved to heere the doese would be smaller. I was getting worried about what it would do to Nathan this time. Each round will have a bigger effect on his counts.

We discussed scans again. There was no word from NY about what they wanted. We basically decided that there is not much of a need to do them right now since he has had different tests since relapse that have showed good numbers. So - we are just playing it by ear and will keep revisiting whether there is a need for scans and which ones. This is fine with me. For a while I was obsessed with wanting to know his cancer status. Is he NED again? Well - I realize that right now there is no reason we need to know that. He seems to be holding his own and we know that any other chemo is out of the question for him. In some ways I would rather not know that he has a little spot of something somewhere when there is nothing different we can be doing right now anyway. When it is time to scan...then we will know. It makes it hard to answer the question that every asks.."how is Nathan?" When I am asked that the quick answer is that he is doing well - because for our everyday life purposes he is. I suppose this does not give people the full picture. I imagine there are people who think he is well means his cancer is gone and he will go on to live a long life. That is highly unlikely - but of course that is what we hope for. He is doing well - but he is still battling cancer. In his day to day life - he is doing everything any other 5 year old could want to be doing and he feels well despite his very lazy bone marrow.

Nathan and Julia learned about Noah at Sunday school this week. Nathan asked Luke what causes flooding and Luke told him that lots of rain can cause flooding. Nathan said that hurricanes cause floods too. When Luke agreed, NAthan said "but God promised he would never flood the world again!" Luke assured him that meant the whole world and that the hurricane flooded some areas but not the whole thing. So Nathan responded "so he is just flooding it city by city?" We had a good chuckle out of that.

I had a good birthday. Last year the kids wanted to get me balloons and so Luke took them to the party store and they picked out presents for me there too. So - this year they thought they shoudl do the same. Luke took them and they each got me a balloon and present. Julia got me a Happy Birthday balloon and a princess bouncy ball. Nathan got be a sticky football and a heart shaped balloon with roses on it that said I Love You. His balloon choice really is an example of his personality. He is so sweet and such a little man. He thought that telling me "I Love You" on my brithday would be a really good thing to do. Luke got me an Ipod! We don't usually do much for each other on our birthdays but he said I deserved it. I am already getting very good use out of it. I forget how much listening to music lifts my spirits and with kids in the house with me I rarely get to listen to anything I want to hear.

The other parts of our week and weekend were fairly normal. I can't really think of anything that stands out. Nathan would probably say he didn't do anything fun. That is his new thing now is saying he is not having fun and looking to me to provide some. This complaint can come after a full day of doing all kinds of fun things - it doesn't matter.

So - we are clinic free the rest of the week. I am taking the kids to the dentist tomorrow afternoon. I sort of dread that because their dentist seems kind fo judgmental to me so I am sure I will be told they are not brushing well or often enough. Oh well... I see my own dentist on Thursday - she I like though.

So - that's about it! Thanks for checking in.

Monday, September 26, 2005 6:38 PM CDT

Another Update: Wednesday September 28

Happy Birthday, Susan!

Today we are celebrating Susan's birthday. I don't have to tell you all how amazing Susan is. You know from reading her words here on Nathan's site. Susan is the most amazing mother, wife, and friend that I could ever imagine.

This is the second "top post" of the day. Please make sure and read Susan's short note on her and Julia's doctor appointments right below this.


************************************************
Update: Wednesday September 28

Just wanted to say that Julia's heart is perfectly normal! She'll go back in a year and then 5 years. My appointment was fine. I did gain some weight and a centimeter. The baby sounded fine.

************************************************
Another week - counts still about the same.....

The good thing is that his hemoglobin was up a little. Usually it is up on a Thursday (after medication to boost it on Monday) and then down on Monday when he receives medication again - so it was good it was up a little on a Monday. His ANC is again 800 - so slightly neutropenic but is doctor doesn't think it will drop more...we are not checking counts again until next Monday - so I hope he is right. His doctor is not worried that his bone marrow is shutting down - he feels it is just very sluggish and is coming up VERY slowly.

Nathan got a flu shot. He was unhappy at the prospect but as usual handled it like a pro. There is a chance the shot won't even work since his immune system is supressed and may not actually make the antibodies against the flu - but his doctor felt it was worth trying.

We talked about scans and we will probably do the full set in a few weeks. Luke and I have gone back and forth about doing them in NY or not. We feel that they have more expertise. However - we think we will likely do them there in a few months anyway and so I think we will do them here. If (when?) we have the expected ambiguous results the onyl answer would be to rescan to see if anything changes anyway and we can do that in New York. His local doctor will confer with the NY doctor about what scans are needed for the trial and we will make the final decision about when to do them. At this point it has been 3 months since MIBG, 2 months since bone marrows and a few weeks since CT scan. We will go ahead and do them all (and the urine test) to get back on track. Let's see - what else...Oh - his weight is back up! He is back to 40 pounds and so we are feeling good about that.

We had a good weekend. I went to the spa - thanks again to whomever sent me the gift certificate. It was wonderful! Luke and I also went out to dinner. We worked on boy names but didn't make too much progress. We did settle on a girl name (Jude H....we have a policy of not sharing our baby names until the baby comes out..sorry!). It was nice having a leisurely dinner together.

I go to the doctor tomorrow and am just hoping to hear that I have grown a little since last time. I didn't have any growth between my last two appointments. I am not too worried - but a little bit. It doesn't help that people left and right are telling me how small I am for being as far along as I am. At least the last person who made a comment said I was carrying well - I much prefer that! I have been starting to buy the needed baby things...8 weeks left! I can't believe it!

Julia also goes to the doctor tomorrow. She has a follow-up echocardiogram. They are just checking another time to see if she has any heart damage from the Kawasaki's disease. It is highly unlikely at this point. After this one I think she won't be checked again for a year or two. She is happy about getting to go to the doctor and Nathan needing the babysitting! Though she did ask if she could stay and play after she was done. She gets along SO well with Tammy's daugher.

So - that's it for now...it will be nice having only one clinic trip this week.

Friday, September 23, 2005 7:55 AM CDT

Well - counts are still kind of crummy. His white count was up as a result of the medication. I don't think I mentioned it is in shot form - Nathan is so good about it. His white count is only up a little however... His hemoglobin is about the same and his platelets are lower. I am beginning to really worry about his bone marrow. He does have some stem cells stored but we really need to save those for future treatment. After surgery we had thought about trying to colect more stem cells but it is pretty clear that he has none to give us - so I am glad we didn't go to all the trouble trying to get some. He will me on the medication (neupogen) through today and then we wills top on the weekend and see what his counts are on Monday. Monday will be a day shy of 4 weeks since chemo.

They repeated the tests on his blood that show inflammation. One didn't get done I guess - but the other was down quite a bit from last Monday. So - whatever was going on in his body (probably this leg thing?) seems to have resolved itself. Monday I will discuss with his doctor the timing of his next MIBG scan and Luke and I will need to decide if we are doing it here on in NY.

Nathan fell asleep on the way to his appointment. This is very rare for him. He was very unhappy when he woke up and had to walk into the clinic. He threw a fit remarkably like one of his post-narcotic psychoses. Fortunately he did walk even though he screamed and complained the whole time. If he had refused I guess I would have had to have someone bring a wheelchair down from the clinic. It is odd for me to be at a point where I can no longer carry my child! If I weren't pregnant I suppose I might have been able to do it. As it is every step I take hurts these days.

As far as non-medical - things are going well. Nathan told me the other morning how much he like to go to school and that his favorite part of school is learning new letters. He seems to have lots of friends in school. One little boy has been begging his mom to have Nathan over - so on Wednesday after school she asked if Nathan would like to come over sometime. I told her our schedule is difficult to predict sometimes and then I said he might have chemo next week. She asked me to repeat myself and I said chemo and then said something about that Nathan is the one with no hair. I just assumed she knew! Yesterday when I saw her again we had our phone numbers to exchange and I told her I hope I didn't freak her out and she said no, of course, and said her son had told her Nathan had no hair but she thought he just meant Nathan had a buzz cut or something! Anyway - hopefully he will have a playdate next week. As for hair - I think the light chemos he has had have kept it from regrowing. There is some whitish baby fuzz - but no real hair.

So - we are still playing the waiting game...waiting for counts, chemo and vaccine...but Nathan is feeling good so that is what matters right now.

Tuesday, September 20, 2005 8:16 AM CDT

I have to start this entry today celebtrating the beginning of our wonderful family - on this day eight years ago Luke and I got married in a little white chapel in Annadale Virginia.

Now to the medical...
Nathan's bone scan came back clear. He also seems to have stopped having pain in the leg for now. His counts are still tanking. His platelets were up a little but his ANC was only 700 which is getting close to the level we need to keep him home. His hemoglobin was also lower but not in transfusion range. We opted to give him so neupogen to up his white count even though it may stall out his platelets. I don't want him missing school when he feels so good. His doctor is now wondering if when we started round 2 of the chemo and his counts were so great perhaps they still were going to drop and so we really hurt them by starting chemo again so soon. Whatever the reason he will not have chemo this week. We heard from NY that the vaccine trial is at least 6 weeks from opening and so the chemo will continue for now. I am hoping we can actually start the trial after the baby comes if not after the holidays. I will have to find out how time critical it all is. So - Nathan goes back to check counts on Thursday.

We had a very nice weekend. We had a pass we got from Give Kids the World that allowed us to go to other parks at no cost for a year and so we used it to go the the Royal Gorge (about an hour and a half away). First we stopped at a park that let us ride a ittle train to view the gorge and bridge and then we went to the gorge and rode the carolsel, the incline down to the bottom of the gorge and walked out onto the bridge. It is the world's tallest suspension bridge.

I must run off to get Nathan on the bus - I will update again on Thursday.

Friday, September 16, 2005 9:37 AM CDT

Hmm - I gues I forgot to update yesterday - sorry!

Nathan's counts are still low. His platelets and hemoglobin were only very slightly up and his ANC (immunity) was a little lower but still OK at 1100. So - we will definately not have chemo on Monday. There is still no word from the doctor in NY so we are still in the dark about things. Since his counts haven't come up it doesn't hurt anything that we haven't heard - but it is frustrating to not know what the next step may be.

I took Nathan in for his bone scan injection this morning and we will go back in a little while for the scan. There will be a screen where I can see what is on it - but I am not that familiar with a bone scan so I don't think I will try to interpret it. Hopefully the results will be available on Monday when Nathan goes back to the doctor.

Nathan's weight was up about a pound - so I am pleased about that. He definately looks a little bit better in that department.

On Wednesday evening we all went to the church. They have dinner and programs and we had asked the kids if they were interrested in kid's choir and they were. I went to my choir rehearsal and Luke went to a class. Both kids seemed to have a really good time. Unfortunately it keeps them up quite late since my rehearsal isn't over until 8:30 but they keep the kids and let them play. They went straight to bed and so it seems to have worked out fine.

My doctor's appointment went fine. I didn't appear to grow any since the last appointment - but am still in the normal range - plus those measurements are anything but exact. If I still show now change next week then they will look into it. The baby is quite active and is head down so everything seems good there. 10 weeks or so to go. Luke and I need to come up with some names for this child!

So - I think that catches us up. Check out the view photos link for more new pictures.

Monday, September 12, 2005 6:01 PM CDT

Here we are after a busy weekend. I will get to that in a moment.

I have to share the medical news first. I have been extremely stressed about Nathan's status. We did get some good news today that Nathan's urine levels are normal as is his LDH. His urine levels were elevated at relapse so it is good to see them back to normal. We didn't have his LDH at relapse but it can be an indicator of cancer activity in the body. His Sed rate and CRP are both high. Once again - these are the tests for inflammation in the body. They can be high for all kinds of reasons. For example they were high when he was diagnosed and they were also high when he had the fluid on his hip. So - between the recent surgery, leg pain, and recent viral respiratory illness who knows what that represents. We will redo it next week. The bone scan will really be the next indicator of what may be going on. I was putting lotion on his legs last night and rubbing it on the "spot" on his thigh hurt him. His oncologist said it really seems like a soft tissue problem (muscle or fat). So - we'll see what the bone scan says and go on from there.

His counts are actually lower. His doctor thinks that his platelets rising last week may have been an inaccurate test. They are at 23,000 (transfuse at 20,000) but are likely on their way up (they can tell that his platelets are bigger cells which mean newer...something like that - from some graph the machine prints). His hemoglobin was down but at 8.2 still not at transfusion level and will hopefully remain high enough not to transfuse. His ANC was 1200. Anything below 1000 is neutropenic but it is really below 500 where he should be kept out of public places so 1200 is just fine. This is without having any neupogen - which is the drug he usually gets to bring his white counts up - so that is fine.

We will recheck counts on Thursday and try to figure out where we will go from there. If they are still low, we will see about chemo next week. If he takes to long to recover they will lower his dose of chemo back to where it was the first round. We are kind of assuming at this point that he will have another round of chemo. His oncologist will email the NY oncologist to see what the status is on the vaccine trial and get his input on more chemo. I asked him if there were no trial what he would recommend for Nathan and he thought 4 rounds of this chemo (total) so two more rounds. Since we haven't heard anything from NY I think it is very likely he will start chemo next week again so long as his counts are high enough. I hope we at least get a little bit of info from NY.

We didn't get Nathan's weight today, but I think he is holding steady. I will make sure to get it on Thursday. I think that covers all things medical for today....

Back to our weekend...Friday night Luke and I went to the choir banquet and the kids were very happy to be babysat. They just love babysitters and especially love the sitter they had - Brenna. They love to play with her. Unfortunately I had bad indigestion all night which made it a little hard to enjoy it all. It is just one of those pregnancy things that crop up every once in a while and I wish it could have happened a different night.

Saturday we took it easy during the day with me running a few errands by myself and then a family trip to the "cookie coffee shop" AKA Panera for an afternoon snack. That is one of the kids' favorite outings. Saturday night we went to the zoo. It was a very fun evening. They had trams taking everyone around the zoo so we didn't have to tackle any of those hills! The kids decorated crowns, ate corn dogs and popcorn, rode the carousel, checked out a racecar, fed the giraffes, rode the little train, got a very close up view of a lion, watched an elephant paint, won a canvas of the elephants trunk print we saw it make, and got all kinds of cool little gifts and things to bring home. It was neat being at the zoo in the evening and especially when it got dark. We only did about half of the things available to do - but we had to leave at a reasonable time to get everyone to bed. It was a wonderful event and will be annual from now on.

Sunday brought church, housework and some rest too.

Luke is off playing pick-up basketball after several Mondays in a row without being able to make it.

Tomorrow I have a doctors appointment while the kids are in school and Wednesday Nathan has field day at school and I will drop Julia off at Tammy's so I can be with him and help him to do activities and keep him from doing things he should not be with low blood counts. So - I will probably write again on Thursday after his clinic visit.

Thanks for checking in!

Friday, September 9, 2005 7:41 AM CDT

TGIF!

Nathan went to the clinic yesterday and we were happy to find that his platelets went up and his ANC stayed around th same - which is a number that is fine for his immunity. He hemoglobin dropped a little - but not into transfusion range and he does really well with low hemoglobin so we are not going to worry about the weekend. Hopefully it will bounce back up since his platelets are coming up. His doctor wasn't in so we didn't find out if he has heard anything from the doctor in New York. Nathan is still coughing some, but his lungs sound clear again. We are giving him the inhaler when the coughing gets bad - but have no feel for why he is coughing. His leg pain seems to have gone away again. I couldn't get his bone scan scheduled until the 16th - so we still have to wait a week for that. We did collect his urine yesterday and they did some blood work that, if elevated would indicate a problem - though the problem could be cancer or some other medical problem so we would have to start looking. I imagine we will find out the bloodwork results on Monday.

Tonight Luke and I are going to a banquet for my choir and tomorrow night the whole family is going to the zoo. It is a special program of some sort for pediatric oncology patients. That is about all we know about it - but I am guessing we might get to do some things there that people normally don't get to do - so we are hoping it is fun for the kids. I am a little worried about getting around. Our zoo is built into the side of the mountain and has very steep hills.

Well - that is about it for goings on here. Hope you all have a good weekend.

Tuesday, September 6, 2005 4:40 PM MDT

An update on Nathan's appointment today...

His counts are actually down. His doctor said that the 20ncrease he got in chemo could definately be enough to make the change from last round when his counts didn't drop at all. The good thing is his white blood count and ANC which represent his immunity are fine. His platelets are quite low and his hemoglobin (red blood) is lower as well. We'll go back to check on Thursday so he can get platelets on Friday if needed.

His cat scan report was the usual slightly iffy results. There are definately no more tumors in there. There were two lymph nodes in his abdomen near his chest that may be slightly larger than in the last scan. Nathan's doctor is not worried about them. He feels it is probably changes from surgery. It will be one of those things we just watch.

Nathan will have a bone scan to see about the leg. I will schedule it tomorrow. They will also do the urine test for neuroblastoma on Thursday. That will take a week or so to get back.

Nathan's local doctor will email the doctor in New York and we'll see if there is any news about the vaccine study.

************************************************
**************************************************
Monday, September 5, 2005 3:49 PM CDT

Hope you all had a good Labor Day weekend.

I am trying to think what we have been up to. Nathan finished his chemo on Saturday. He threw up last night once, but that is the extent of it so far - so not bad. He does seem a little more tired and so we'll see how the beginning of this week goes. He is still coughing some too. His leg pain is back. We want to do something this time to find out what is going on. It could be cancer or it could be neuropathy or something completely different. Either way - we really need to know. If it is cancer then we need to be doing a different treatment for Nathan than we are doing currently. We'll see what his doctor says tomorrow.

As far as our weekend as a family...well...Friday afternoon the kids and I went to a friend's house and the kids played while the moms cleaned. It was the first time that Nathan has played with kids other than at Tammy's (daycare) for a very long time. Too long... He was hooked up to chemo but it didn't stop him. Friday night Luke and I watched a movie - I wouldn't normally mention it but we both really liked it so I thought I would pass it on. "Life as a House". Now it is about a man who is dying but really it is a movie about people and we both really thought it was very good but a little sad at times.

Saturday we ran some errands, had lunch outside at Sonic and thoroughly cleaned the van inside and out. It was the first time the kids helped to wash the van and they and Luke had a wonderful time.


It was a normal average Saturday I suppose - but a really good day for our family for that same reason!

Sunday we went to church. Julia sang "Our God is an Awesome God" all the way home in the van - Luke and I really got a kick out of that. They both really enjoy Sunday school. We went to a birthday party in the afternoon for a little girl turing one that goes to day care with Nathan and Julia. We all had a good time.

Today Luke and I (and the kids to a somewhat lesser extent) cleaned all morning long and then went to a baseball game (Colorado Springs Sky Soxx). It was the first we have gone to as a family. Nathan really enjoyed it. Julia was a bit bored. I was a bit uncomfortable! All in all we had a nice time. We left in the sixth inning.

So - that brings us to now. Tomorrow both Nathan and Julia go to school and then Nathan goes to clinic in the afternoon. I will try to muster up the energy to go to choir practice either tomorrow or Wednesday night. Luke doesn't get much of a mention I guess because he will be working, as usual!

I am hoping that Nathan feels well enough to attend school all week. Of course - we may throw in some extra scans to figure out this leg thing and that could affect school. We should see a CT scan report tomorrow and are hoping it contains no nasty surprises.

I put some pictures from August on out family web page...see link nearer the top of the page or at the bottom.

Wednesday, August 31, 2005 7:48 PM CDT

/* Friday 8am
Luke here doing a short top post. Nathan had his CT scan yesterday. He did great, as always. It is almost not worth mentioning anymore. He just automatically goes where he needs to go and does what he needs to do. We are, of course, a little nervous any time we do the "scan thing" and appreciate everyone's well wishes. I don't know if we will get a preliminary report today or not. We will post information when we get it.
*/

Nathan started chemo yesterday afternoon and is doing just fine. So far there has been no nausea or diarrhea. I ran around yesterday trying to get a special adapter for his inhaler. I wasn't able to get it until today - but Tammy, our wonderful day care provider ;) - had one for her daughter and so she showed us how to use it. It didn't go to well because Nathan didn't really get the idea of taking a large breath in. Today I was just way to tired to attempt it again and so I am waiting for Luke to help since he has the expertise the the whole thing.

Last night after leaving the kids at Tammy's I went to Nathan's back to school night. It was really informative and I was happy I made the effort to go. I am really impressed with his school, teacher and curriculum. He has 26 kids in his class - which seems like WAY too many for one teacher but somehow he does seem to be getting the attention he needs. I think he is fitting in OK with the class. He has had a few instances of kids pushing and that kind of thing - but also relates conversations he has had and one mom told me how much her son likes Nathan and that the day Nathan had to leave early her son was crying about it when she picked him up. So all in all it seems to be going just like Kindergarten should. I have been trying to set up a playdate with a boy in his class but with him starting chemo again this week it has not been able to happen yet.

Tomorrow is the Cat scan. I will have to go give him his oral contrast at 11:00 at school - but I am glad we were able to arrange it so he didn't miss any school.

Well - I really need to get the kids to bed. I just called for them and heard Julia saying something like "I'm not going anywhere right now!" in a very SNOTTY voice. So - it looks to be an unpleasant bedtime......

Monday, August 29, 2005 5:48 PM CDT

I guess I will start with medical and end with personal today.

Nathan's counts are great! It seems they were not really affected by the chemo. This is puzzling. We will never know how low they may have gotten between Wednesday and today - but they couldn't have even come near anything at all neutropenic. His doctor reminded me that the severity of the side effects does not have anything to do with how well the chemo is working - but he also did decide to up his dose on one of the chemos by 20%. Since his counts are so good he is going to start chemo again tomorrow instead of next week. He will go into the clinic tomorrow and then have it at home through Saturday. So - we will pretty much be stuck at home inthe afternoons this week - but at least we will be home and not int he clinic most of the week.

On Thursday Nathan has a CT scan to use as a "baseline" scan post-surgery. Please send prayers and positive thoughts for no suprises in it. As far as the leg pain - it seems to be gone. I hadn't asked Nathan about it and today he told the doctor it didn't hurt anymore but he couldn't remember when the pain had gone away.

One thing wearing on me currently is that in two weeks Nathan has lost .8 kilograms. This is almost 2 pounds. he currently weighs 37 pounds. He is 46 inches and so that is very, very skinny. Nothing really has happened in those two weeks to warrant the weight loss. His doctor syas it may be just htat his body is still fighting to keep weight on from the surgery and chemos. He wouldn't speculate further, but gave him a good physical exam - I think looking for any obvious reasons. Of course I am a worried that it may be caused by some bad thing....but I am trying to put that out of my mind. Meanwhile he suggested putting Nathan on pedisure. I will try - but Nathan does not drink a whole lot - and when he does they are small sips and I just know we won't be able to get much of that into him. I am hoping to find some other way to get extra calories in him.

On to the lungs. They sounded better today - however on an unrelated note his doctor heard some wheezing in his lungs. He asked if there was any family history of asthma. I told him Luke had bad childhood asthma. He said that often it starts with hearing it in the lungs before we ever hear the child wheeze. He wants to put him on an inhaler. I didn't get to talk in depth about that...like - is this a permanent thing or just as needed. He called in a prescription and I will bring it to the clnic tomorrow and they will show us how to use it. I figure I will take that time to ask more about the whole potential asthma thing. Frankly - I am a little overloaded with having three major things we were trying to figure out in one appointment.

Bottom line is - his counts are good, he feels good, he currently has a little cough, and he is very skinny. So - all in all - a fine state to be in and starting chemo early is a good thing in the cancer fight.

On to non-medical. We had a wonderful weekend in the mountains. My brother got married yesterday and we had a wonderful time with family. Luke even took the kids on a little hike to a waterful yesterday morning. He was so proud of them for not complaining about the walking and he really had a great time with them. Unfortunately, my current aches and pains in my pregnant state prevented me from joining them. Both kids were incredibly well-behaved for two long dinners, pictures, and ceremony. We had a very late drive home last night. The best I could do was stay awake until Luke had navigated the curvy mountain passes and then joined the kids asleep. A big thanks to Luke for cheerfully driving us all home late last night. Luke just left for a business trip. He will be home in time to take Nathan to his CT scan on Thursday since I cannot be in the CT room.

My current stress right now is INSURANCE! I am fighting to get the insurance corrected for both Julia and Nathan (Nathan's being from sometime in 2003!). Meanwhile bills are being sent to collection that are incorrect and so I don't want to pay them until they are fixed but I also don't want to ruin our credit. UGH! I HATE insurance. I am a CPA and have trouble sorting this all out.

So - I think that touches the tip of the iceburg anyway. Luke and I both are feeling like we are flying blind with Nathan. We don't know the current status of his disease - we don't know what what treatments he will be having. We don't know if every little tiny weird physical thing with him is cancer or not. It is not a fun place to be - so I just keep reminding myself to enjoy each day. That was especially easy to do this weekend with family and a wedding. Life goes on.....

Saturday, August 27, 2005 8:34 AM CDT

Nathan has had a good end of the week. He complained once about his leg - after he had gone to bed and he and Julia kept coming out of their rooms for this and that - so I don't really think it was anything much.

His cough is still there - but sporadic and not bothering him. He did well at school Thursday and Friday. His counts are probably down some but we won't find out until Monday.

We are off to the mountains today. We need nothing medical to arise this weekend while we are so far away from medical care. Please send your good thoughts our way.

The little boy, David, who was in the ICU with Nathan passed away on Thursday. We are heartbroken for his family. There are some other children in our cancer "family" who are on their last days. It is sobering. It reminds us that every day we have Nathan with us, despite what his future may hold, is precious. That goes for all the people we love.

Tuesday, August 23, 2005 8:15 PM CDT

Update - Wednesday August 24 4:58 PM MDT

Nathan woke up feeling much better this morning and I sent him to school. He had no problems at school and his cough is better. I took him to the clinic and the doctor thought his lungs sounded a little bad and so we went downstairs for an xray and he definately has something going on there. Who knows if it is viral or bacterial - but he has now had two rounds of IV antibiotics - so if it is bacterial it is being covered. He feels so much better today though. I am also glad there is a possible explanation for his fever yesterday - cancer kids and unexplained fever are not a good combination.

As far as the leg pain - the doctor wants to wait a little bit and see what happens. It seems to be right at the muscle and so a strange place.

If he continues to do well then he will not go back to the clinic until Monday. So - crossing our fingers!
************************************************
Well - I jinxed myself about the clinic because we were back today and will be tomorrow too. This morning Nathan was very tired when he got up. We figured it was from coughing a lot in the night. I cajoled him into going to school. I got a call at 9:30 that he was in the nurse's office and his leg hurt. I talked to him and asked him if he wanted to go back to class or for me to come get him. He said that what he wanted was for me to make it so he could have tylenol at school when he needs it. Then he said he would go back to class. They called again around 10:30 and his leg was hurting again so I went and got him. He had apparently not participated in anything all morning and after sitting on a basket in the gym watching the kids play it started hurting again.

I brought him home and he really seemed to just be tired. He was walking fine and not limping at all. I could move his leg any which way without it hurting. The place where his leg hurts is the top fo his right thigh- a weird place. Luke was finally able to isolate it. It didn't seem to be bothering him anymore unless we really pushed on it.

I had them have quiet time in ther beds and Nathan did fall asleep. When he woke up he had a temperature of 101 so I took him to the clinic. When we got there it was back down. They took blood cultures and gave him an antibiotic. His cough is still bad but his chest still sounds clear. They want to keep listening to it though. His white blood count is high indicating that his body is fighting off something. His temperature was back up a little bit before bed.

The leg thing - which is a separate issue - will be decided tomorrow. Nathan's regular oncologist was out but the other one thought that since he is so high risk we had probably try to figure out what is going on. The reality is - it is likely just either a bruise, pulled muscle, etc or it is a tumor in the bone or bone marrow. His last MIBG scan was 2 months ago and the reality of this disease is that it could come on that quickly. Now that he has relapsed - we have to be even more concerned that every little ache and pain is the cancer. So much for all the positiveness you guys have thanked me for! But really - I literally take things day by day. I don't know what Nathan's future holds - but I don't know anyone else's either and I can't live life worrying about it. I have done enough of that to know when it is time to worry (like waiting for results) I will, the other days I need to push it out of my mind because it isn't going to do any good or to change anything - just ruin my day.

So - we'll see what tomorrow brings...

On a different topic - Julia had a really good time at preschool today. When she came home she was so happy. She hasn't been so happy lately and so it was wonderful to see her that way and obviously a very good thing for her.

I'll update tomorrow.

Monday, August 22, 2005 7:29 PM CDT

Things continue to go well here. Nathan finished his chemo with no problems. He developed a cough this weekend that is bothering him, but otherwise is doing great.

Nathan went off to school today and seemed to have enjoyed himself. I love hearing about all the things he did and learned each day. Today he learned to write a lower-case f.

After school I took him to the clinic. His counts are good. His hemoglobin continues to be a little on the low side - but stable. His other counts are great. We should start to see the effects of the chemo on his counts late in the week. He will get them checked again on Friday. He got a full exam and the good thing was that though his cough sounds bad - his lungs are perfectly clear. This confirms our suspicions that the cough is from his allergies. Other than being skinny (he has lost a few pounds since the relapse) he looks really good. When he got out of kindergarten he ran over to me. I love seeing him break out into a spontaneous run.

So - no chemo this week - no clinic until Friday. Julia starts preschool this week. All in all it is looking to be a good week.

Friday, August 19, 2005 8:01 AM CDT

Nathan continues to handle the chemo well. He has had no more nausea, vomitting or diarrhea. He seems a little bit more tired and emotional - but that could also be from his first week of school. He has continued to have lots to tell us about his day at school and is still enjoying it.

Today is the last day of chemo and then we will take the line out of his port for the weekend. Monday he will get his counts checked at the clinic. I imagine he will also go back either Thursday or Friday too.

Julia went to her preschool orientation yesterday. She was pretty quiet and shy, but I don't think it will take too long for her to get into it. She already knows her teachers so that should help. She starts on Tuesday.

I would like to ask for some prayers for a little boy and his family who was in the same room at the ICU as Nathan in NY. He had the same surgery as Nathan - to remove his tumor and unfortunately had complications afterwards and is in very serious condition. His name is David. Sometimes we forget that all the treatments to save these kids lives are themselves so dangerous. It is very sobering.

Well - off to get Nathan ready for school...

Wednesday, August 17, 2005 7:31 AM CDT

So far, so good with this chemo. Nathan did throw up yesterday morning a few times. His allergies were bad and he had a lot of mucous and was trying to cough it out and so I think he was more suceotible to vomitting. We gave him some medicine (like benedryl) that did the trick. We gave him some before the oral chemo last night and so far this morning he is fine. He did have one episone of diarrhea last night but it apprears to be isolated because there was not more afterwards. We will see how today goes.

Nathan did fine with the infusion again yesterday at the clinic and so we are set to give it at home the rest of the week. They were giving him an anti-diarrhea medicine at the clinic that cannot be given at home and so if he gets diarrhea during the infusion at home we may need to finish in the clinic.

His second day of school went well. His current problem is that they go outside to eat snack and play and he hasn't managed to eat his snack quickly enough to get to the playground. He is not a quick eater - so he will just have to prioritize I guess. I love sending him on that bus - to go off and do his own thing...he is ready for that and I am so happy for him.

Julia has her preschool orientation tomorrow and starts next Tuesday. I know she is going to LOVE it. Poor thing was trying to tell her grandparents all of Nathan's ancedotes from Kindergarten - which was making him mad. She definately needs her own thing.

The other little Gentry seems to be doing just fine. He or she is pretty active and I am enjoying feeling him or her roll and kick.

If all goes well - Nathan next goes back to the clinic on Monday for counts.

Monday, August 15, 2005 8:51 PM CDT

First day of school was a success. Yesterday our neighbor who is in the fifth grade offered to sit by Nathan on the bus and so that was really nice for Nathan. He thoroughly enjoyed riding the bus. I drove over and met the bus and left him at his classroom and went to talk to the nurse. When I left (an hour later) they were having snack outside. He was all smiles when we picked him up and said he had a good time. He also said it was kind of hard because they had to sit on the carpet alot and listen to the teacher tell them things.

His chemo went smoothly. Since he did not have any trouble during the infusion we should be able to do it at home for the end of the week. He will go back tomorrow for the chemo again just to make sure he is still handling it fine. His counts are pretty good to start the chemo. We just have no idea how hard hit they will get since he has proven to have trouble recovering them. We are also waiting to see if he gets diarrhea. I am just really hoping if he does - it can be managed with medication and he feels OK and can go to school. If he starts getting any we have to dose him every three hours (all night long too) so it would be really nice if he doesn't get any at all - but as long as he can keep up his activities with it I will be happy.

I don't think I heard him complain about pain from his incision at all today. So - that is good progress.

I put some pictures in the photo area (view photos at top and bottom of page). He didn't really want us to take any but we told him there were so many people who care about him who really want to see some.

We are so thrilled that he got to start school today. It has been my hope since he was diagnosed to get to this day and it is such a big step in Nathan's life - I am just so happy for him.

Sunday, August 14, 2005 9:12 AM CDT

We are home! The trip home was uneventful. Nathan is doing even better at home. He has slipped back into playing with Julia and going up and down stairs, etc. without hesitation.

We were all so happy to see Julia. She and Nathan are having a wonderful time playing.

We are off for school shopping today. Tomorrow Nathan will go to school. I have to meet with the school nurse first thing and answer some questions for her. He will have chemo in the afternoon.

Don't worry - we'll take pictures!

Thursday, August 11, 2005 7:34 PM CDT

Update Friday August 12, 2005

Just posting to say we had a really good time at the zoo today and mostly to say I finally update our family pictures. See the links in the orange type above.

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

We have been having a nice time out of the hospital. Yesterday we had a leisurely morning and then headed down to Times Square to go to Toys R Us and out to lunch. We rested the rest of the day. Nathan is still going strong. He is getting around well. He actually attempted running around this afternoon. He is having some pain from his incision - especially when he lies down. He is on only Tylenol when he requests it.

He had his follow-up with the surgeons today and they say he is doing great. Everything is healing nicely and they are very pleased. He is cleared for normal activity.

We had a chat with his oncologist. The plan is to start the chemo on Monday. When the vaccine trial opens in about 6 week we will return. They want a CAT scan done in about 4 weeks - but they feel we should just do that in Colorado Springs and send the film to them. They want to have a "baseline" cat scan to use to compare future scans to. He will probably have an MIBG scan when he goes out to start the trial. He should normally only have to spend 2 days in the clinic for each round of the vaccine. If the vaccine is delayed we may continue the chemo if Nathan tolerates it well.

We talked about collecting more stem cells from Nathan. The doctor thinks it would be a good idea to try - but we all feel the likelihood of a good collection is not great and it is not an insignificant thing for Nathan to go through - so we will have to mull it over.

Back to our day today - after the clinic we walked down to the candy store and then had some lunch. It was very hot and so we went back home and Luke and I crashed - Nathan probably could have kept going. Tonight we had dinner with our friends John and Judy and then Luke went off to have drinks with an acquaintance from college. Tomorrow we have promised Nathan we will go to the zoo and on Saturday we will fly home!

So - I may not update again until we get home unless something crops up.

Tuesday, August 9, 2005 2:34 PM CDT

We are out of the hospital! Nathan had a real food dinner last night and tolerated it just fine. We went straight from the hospital to the toy store where Nathan picked out some toys and played with the train set. He looked very tierd on his stroller ride back, but we came home and Luke and I have our feet up but he is on the floor playing with his new toys. He is doing great. He was complaining about not being able to walk fast but we assured him he will be running around soon.

We will go back to the day hospital on Thursday to see the surgeons (they will remove his stiches) and see the neuroblastoma team. We hope to learn a little more about the vaccine and its time requirements.

Tomorrow we may go to Times Square or some other outing that Nathan requests.

Monday, August 8, 2005 12:16 AM CDT

Update 8:55 PM

Well - first off his bone marrow is clean....very good news. We have a tentative game plan pending a meeting of the neuroblastoma team tomorrow afternoon. The plan is 2 rounds of chemo (irronotecan and temador). These are the two agents that we were due to start before surgery. The main side effect will be diarrhea and his counts will hopefully stay in a good range to go to school.

They want to get scans in about 4 weeks. We might delay that a little because after the 2 rounds of chemo Nathan will probably enter into a new trial for a neuroblastoma vaccine being done here in NY. We don't have any details about it - just that it is due to open in 4 to 6 weeks. He won't be eligible for many studies because he most likely has no measurable disease anymore. Not a bad thing - just not too many options.

He will most likely not be doing any antibodies again because they work mostly on bone marrow disease and prevention for relapse in bone marrow and not on soft tissue tumors like the one Nathan had.

He still should be on track to get out of the hospital tomorrow. We will go back to the surgeons at the end of the week and then we are free to go. Tenatively we will be coming home on Saturday. Nathan may start chemo as soon as Monday. The first day of school is Monday and it is looking good that he will be there. Chemo can begin in the afternoon.

So - keep fingers crossed that all these current plans hold and he gets out tomorrow and we get home this weekend.

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

Nathan is having a really good day so far. They let him eat regular food and he is really enjoying it. We got him up and walking and he is doing great with that. He stayed and played in the playroom for a while. He is walking without our assistance.

We haven't talked to any oncologists today about treatment. I asked the nurse to find out if they want a HAMA test because his doctor mentioned (last week) that he would do one tomorrow and so they would need to draw the blood today. We are also hoping to hear the bone marrow results soon.

Luke and I are assuming they will let him out tomorrow. There doesn't seem to be much reason to keep him here anymore. Once again - no one has told us anything though.

I will update with more later if anything new crops up.

Sunday, August 7, 2005 7:26 AM CDT

Good morning.

Yesterday was a good day. They kept Nathan on sips of clear liquids only. His stomach did get somewhat distended from that - but not too bad. It looks hopeful that he will be back on clear solids today. Other than the eating he is doing great. He is moving all around and sitting up. We will probably get him walking today. He stayed awake all day yesterday and was in a good mood.

He had a good night. Luke got him pain medication once in the night. He seems to only need it twice a day. He was up every 2 hours to pee - they may slow down his fluids tonight.

Sorry I didn't get the hospital info posted. I figured that it would take too long to mail anything before he was out of here.

Some of you have asked about Julia. She is doing just fine. Luke's parents were taking care of her until yesterday and now my parents are at the house with her.

So - nothing much going on (which is good!). We are just anticipating our talk with the oncology team this week.

Saturday, August 6, 2005 5:44 AM CDT

Well - we did get moved back to Memorial Sloan Kettering yesterday around 5:00. The end of the day was not as smooth as the beginning because Nathan started having diarrhea. It was frequent and so painful to be lifted around and then his bottom has become very sore as well.

We took the tunnels to the hospital instead of an ambulance so Nathan was quite sad about that but he got over it. It was really sad to see him be so upset because it was the one thing he was looking forward to in all of this.

He was up quite late last night because I noticed his tummy had become quite distended and he had a warm red patch on it as well. They took him down for an x-ray (which was not fun with all the moving to and fro). From what I understand his bowel is swollen from starting to work again. It looks better this morning.

He had been on a clear liquid diet and they changed it so he wouldn't eat until they figured out his tummy situation. I haven't heard this morning what the plan is. He was enjoying eating the few food he could yesterday so I hope it is OK for him to eat them again or his is going to be very unhappy.

We don't expect to find out anythign about future treatment until next week. Being the weekend, we will not see any of the main doctors.

We will update again later.

Friday, August 5, 2005 9:17 AM CDT

Luke here. Susan posted a pretty long entry last night, so if you didn't check it then you might want to visit the journal history.

I stayed with Nathan last night and he really had a pretty good night. Once we settled in to sleep we stopped hassling him about breathing deep and coughing. He was in some pain still from his incision and struggled a bit staying in a comfortable position, but really slept pretty well. This morning they hear good bowel sounds and he has started sipping juice. He isn't too terribly interested yet, but making progress. He had been off any supplemental oxygen for almost 3 hours when I left this morning and he was holding pretty well on his own. There was a bit of confusion this morning because his hemoglobin count showed a drastic drop. Normally they would have been worried about internal bleeding, but he looked so good that they thought the reading was probably too low for some reason (e.g. dilution) and they were rerunning tests. The quick tests showed that the initial readings were incorrect and that he is doing fine.

The intensivists and surgeons are very happy with his recovery. He looks like himself this morning with all of the puffiness and swelling coming down. They plan to pull his catheter and a-line (arterial IV) today and it looks like it won't matter if there is room in the observation unit because he is doing so well that they all agree he can go straight to "the floor".

Once we are back over at MSK we will post hospital room information and hopefully get an idea of how long they think we will be in. Several people have inquired about sending things. Please email Susan and I if you want and we can get an address to you. We will have better internet access from over at MSK and will get emails and be able to easier post updates.

Thanks for your continued support. No matter how much we say that in these posts, we can't convey how much you all prop us up and help us through this.

Thursday, August 4, 2005 9:30 PM CDT

This is Susan. Nathan is continuing to do well. Now that he has been off the ventilator for a while he needs to be taking deeper breaths and coughing more to keep his lungs inflated. We are having to hassle him to do it. The coughing hurts his incision and so he is reluctant (of course). He is being very good and very brave about it all. He has even attempted a few smiles today.

His chest tube was removed this afternoon and as soon as his bowels move a little he will be on his wa y out of the ICU. They expect him to go back to Sloan tomorrow. He will go to the POU (pediatric observation unit) at first. Right now it is full - so we will have to see if a slot opens up.

He was awake a good part of the day and watched a lot of TVs and movies. It was nice to be able to have a conversation with him after having him trying to tell us things with the tube down his throat.

His puffiness has gone WAY down today. We almost felt as if we could just watch it going down. After surgery - these kids are EXTREMELY puffy. Nathan could really only open hisright eye a slit and his left not at all until later this morning. He is starting to look like Nathan again.

After his surgery ended he was in the recovery room getting ready to be moved by ambulance across the street. They were breathing for him with a hand respirator and he was hooked up to everything and very puffy and there was about 8 people working on him. It was surreal...I just looked at Luke and told him it was just so wrong see your own child like that. I know we have become way desensitized to all of these things medical - but for some reason it really hit me watching him like this - it just is not right.....The nurses were saying how good it was that he copes so well (this is while he was having some unpleasant procedure done today) and I said that yes - it is good, but it is really sad that he has to.

I want to thank everyone for their thoughts and prayers and your guestook entries. We really appreciate all of you.

I am at the apartment tonight while Luke stays with Nathan (we were both there last night - Luke slept in a chair most of the night while I got the "chair bed"). Luke will probably update on how his night went when he come back here in the morning.



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

Thursday, August 4, 2005 8:04 AM CDT

Just a quick update. Nathan's move over to the PICU in the other hospital went fine. He really didn't have any complications through the night. I was out of the room when he first woke up. Susan tells me he was pretty upset by the tube down his throat. He was more awake and aware of that then we would have liked, but he slept pretty well through the night. I guess he calmed down in not too long (10 to 15 minutes). Then he went into brave Nathan cope mode and just dealt with it. He would wake up from time to time and be aware of the tube, but didn't fuss about it much. They extubated this morning. All of his tests and bloodwork show that he is recovering pretty well. It was nice to get extubated so quickly. He doesn't seem to be in too much pain and it sure is nice to hear him talking a little after being extubated.

We don't really have an idea yet as to when he may move back to Sloan. I expect that he will stay in the PICU again tonight at the very least. I think they will wait until his chest tube is removed and he is less reliant on the pain medication.

As always, thank you for your prayers, good thoughts, and notes of support.

Tuesday, August 2, 2005 5:49 PM CDT

Surgery update 2:00 PM

The surgery is done. It was very stuck to the kidney and the veins surrounding it and so they removed the right kidney. The only other structure it was stuck to was the vena cava (major artery) which the surgeon said needed many stitches. They did the intraoperative radiation and that went fine. The surgeon confirmed the patholgy while the surgery was going on it is is neuroblastoma (though matured - probably due to chemo - ganglioneuroblastoma). Nathan is in recory and we will be heading up to see him in a few minutes.

As the surgeon said - and we knew - Nathan will need further treatment - when he starts recovery we will be discussing what that will be.

The next update will probably not be until tomorrow unless something changes. He will be heading across the street to another hospital for a few days to be in ICU.
***************************************************
*** Wedsday Quick Update ***
Nathan is in the OR. They were pretty quick about things this morning. He basically went in at around 8am ET. He was getting bone marrows done first. As of 9:35 they were still positioning him for the surgery. It will be a very long day of waiting. We will try and update later today with status. Thank you for your thoughts and prayers.
***

Greetings from New York. Everything went very smoothly today. When we got to the airport we found out they decided to take us to New York first - so we went straight there and landed around 2:00. We were at the hospital by 3:00. They did blood work and exams and we talked to the doctors. We also had to give Nathan a bevy of medicines to prep him for surgery.

The surgeon thinks there is something there and he showed it to us and compared it to a prior scan they had. So - I don't know what the mystery was about something being there or not - but it looks like there is someting there. He may or may not remove the kidney depending on how stuck the tumor is to it. We told him we were all for removing it if would help get the tumor out of there. He is gong ahead and doing the same "big" surgery as last time. They will use the same incision which goes from his abdomen and wraps around towards his back between his ribs. He will have a chest tube, epidural, some IVs, a urinary catheter, nose tube and will be intubated. He will be transported across the street by ambulance to the ICU at NY Presbyterian hospital and after a few days he will be back at Memorial Sloan Kettering at the observation unit and then to the regular inpatient area. We expect him to be in the hospital for a week.

They will also be performing bone marrrow biopsies during the surgery. Those showed clear before and it is crucia that they still are. We will get initial results in a day or two from those.

The radiation oncologist talked to us about how that is done and there really aren't any risks from doing it intraoperatively so we are glad they are doing that. She said it would add about 45 minutes to the total surgery time.

So - we need to be at the hospital at 6:15 tomorrow morning and he should be the first case of the day. I am sure it will be an hour or two before he goes in to the OR and then I imagine he will be in the OR for many hours. Last time it was around 8 I think. We will update as we can - we will probably have someone update when he gets out and we go to the ICU because we won't have computer access there.

We are staying at my aunt's apartment since she and my uncle are in Arizona at the moment. Tomorrow night I expect we will stay at the ICU and then switch off nights spent at the hospital. I need to be careful because last time I got really sick from the stress of the surgery and from the lack of sleep.

Hmm - I feel like there is more to say but this seems long as it is.

We'll update tomorrow.

Monday, August 1, 2005 2:42 PM CDT

BREAKING NEWS!!!!

We got a call this morning from the oncologist in New York and he said that since the MIBG showed something they wanted to at least go in and take a look and he said they could actually do the surgery on Wednesday.

So - I ran Nathan over to the clinic to check his counts and his plateles were a nice number and the surgery is a go. We will be heading out first thing in the morning on a private jet - with a stop in Columbus, Ohio. We are going through an organization called Flight of Hope. The founders of this non-profit sing in choir with me and approached me when they heard about Nathan. Amazingly they were able to drum this up for us on no notice! We have to get into the clinic in New York for some tests tomorrow afternoon. We will be cutting it close but will be in contact with the surgeons office when we land and will go straight over there. So please send good weather vibes our way - if he does not make it in time the surgery will be cancelled.

Julia will be at her babysitters and Grandparents will be on their way to take care of her while we are gone.

The surgery will be first thing Wednesday morning and we will try to keep this site as updated as possible.

We have no idea where we will sleep tomorrow night - but I imagine something will work out. The Ronald McDonald House has been full as late. I have a call into the social worker to see what the deal is.

We are very happy this worked out - a little more notice might have been nice!

Thursday, July 28, 2005 6:57 PM CDT

Update - Friday July 29 4:07 PM

I have pretty much determined the right scans were sent. I talked to the other local oncologist and he says he did look at the scans with Nathan's regular oncologist and they believe they saw a tumor. He explained to me that with as much surgery and radiation that Nathan has had - that it is very difficult to determine what is normal tissue, versus scar tissue, versus tumor.

I looked at the scan report (written) and it seems that a big reason that relapse was determined is that they see change from the prior CT scan. The doctors in New York do not have the prior scans - nor do they have the MIBG scan which showed the bright spot. So perhaps with that data they would feel differently - I don't know.

So - who knows...we emailed the NY oncologsit (still have not actually spoken to him) and told him we would be willing to travel to NY at any time if it would help determine what is going on. We will also furnish prior scans if that would be helpful. Meanwhile Nathan will start chemo as planned and we will just see what becomes of it all.

************************************************
Update - Friday July 29 6:57 AM

Hmm - well - I got an email back from NY...but I never would have expected the answer I got...that the NY radiologist saw NO recurring tumor. Now - I was there for the MIBG scan and I saw the big lit up area where the tumor is - so I am thinking perhaps the wrong scans got sent to NY. Perhaps the wrong date. There was also a confusion when the scan arrived in NY because the scan report was missing. So, anyway, I am certain there is a tumor - we just need to figure out what has happened with the scans and most of all I am relieved not to hear something bad.

The NY oncologist is pleased with our current plan for next week - to start Nathan on a single chemo agent - ironotecan. This chemo does not affect the blood counts and can be done at home most of the time. We do have to wait and see if his platelets are high enough. Yesterday his platelets were 55,000 and they need to be 75,000. His immunity is back to very normal/high numbers so hopefully they will stay in a good range and Nathan can start school.

So - the drama continues and I will update again when we have more info.

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

Good news and also some concerns.....

It has been a roller coaster day.

First off - I had my appointment and the baby looked just fine.

We got a call that the surgery has been now rescheduled for August 29. Due to doctor vacations we will have to also go on Aug 18 to meet with the radiation doctor and come back home. We are due to meet with the surgeon on Aug 25 and will stay for the surgery.

Concerns...well - Nathan's local oncologist is on vacation. We got an email late this afternoon from his NY oncologist saying he needed to get in touch with Dr. Palmer and had sent him a fax and email and had not heard back. Then he realized we had told him the local doctor was not in town and he emailed us again saying to get the other doctor to get the fax because he had some questions about NAthan's CT scan we sent there and that he was faxing the report HIS radiologist had written and needed to talk about it. This is all the information we have. I am extremely concerned that the NY radiologist has seen additional disease on the scan that our local radiologist missed. I can't really imagine a different scenario. I am terrified that he has more disease and this would change his status and make surgery not an option.

So - I guess tomorrow we will find out from the other local oncologist what this is all about but meanwhile we are very worried. I absolutely hate having partial information. I can't help but to think the worst.

Wednesday, July 27, 2005 8:58 AM CDT

Just an update to tell you that we have had word that Nathan's surgery has been pushed back yet again to September 14. Luke and I are very uncomfortable with that and are waiting to speak to his oncologist in New York. At this time we are considering going elsewhere for surgery - though very reluctantly.

We are really hoping that we can ge things figured out when we hear from his oncologist - but itis likely that Luke and I will have to make a big decision about timing of surgery versus surgeon and whether or not to wait in order to do the intraoperative radiation.

We are extremely frustratated because every day this tumor remains in Nathan's body it has a chance to start spreading. If that should happen his prognosis is extremely grim. We just don't know if we can stand by and wait for surgery due to administrative and scheduling problems. If his cancer should spread in that time - because they couldn't get him on the schedule that would be devastating.

So - please send all your thoughts and prayers this way for a resolution and a decision that Luke and I can feel comfortable with.

I will update when we hear anything.

Monday, July 25, 2005 4:47 PM CDT

Nathan's immunity is finally at a level that he can go out and about. We actually thought it would be that way today and went ahead and took him to church yesterday - just not to the nursery or Sunday School. His platlets are getting low again and so we will just have to see if they can sustain themselves or not. He will have his counts checked again on Thursday.

We got a surprise today - Nathan has a permanent tooth. We knew he had some loose teeth but weren't sure if it was normal or not. Well - the new tooth has broken through right behind the baby teeth. He is very happy to have an "adult" tooth now. Now we need to see if the loose tooth/teeth will come out on their own in the next week or two. If not, we will have them removed so we can make sure to do so while his counts are good and also before he has his surgery.

I am also off to the doctor on Thursday for another ultrasound. I am hoping the baby will be awake this time and we can get it to move around enough to finish checking all of its vital parts. As much as I have been being kicked lately I think there is a good chance.

That's about it...

Friday July 22, 2005 6:24 MDT

Nathan's counts are finally starting to move up. He actually has neutrophils today which mean his immunity is starting to build. His platelets responded really well to the transfusion yesterday going to 101 from 2. He had red blood today, but probably could have gone without since it was up just a tad. Unfortunately it was a long day at the clinic - they were busy and didn't get his blood hooked up until 2.5 hours after we arrived. We were there from 9:30 to 3:00.

He will go in on Monday afternoon to check counts again.

*********************************************
Thursday, July 21, 2005 5:20 PM CDT
Nathan's counts are STILL low.

He had almost no platelets (2,000) normal is over 140,000. He hasn't had any nosebleeds so we were surprised they were that low. However - he has a zillion awful bruises all over his body and head due to having such low platelets - he really looks a mess! He also needs red blood cells. He got the platelets today but will get the red blood tomorrow. His white blood count is stuck at .5 with no signs of the cells that will send it higher.

So - he will not be starting chemo next week and now there is a question of if he will even have the Temador - which could suppress his counts. He really needs to resume some sort of chemo to keep the tumor in check. BUT - he really needs good blood counts to have his surgery. I really wish they could get him in sooner. It looks like the August 1 date may not have worked anyway seeing how low his counts are still.

The good news is that he is feeling just fine. That is one reason he has so many brusises because he is running around playing like any normal 5 year old. The low counts mean that we are still housebound. It is getting really old by now. I am really hoping we see some sort of increase in his white blood cell count tomorrow - but we probably won't be able to take him out this weekend.

We are still waiting to hear that his surgery date is final. I had called just to see how many days before we would have to arrive and they said it was only pencilled in at this point. I really hope that it does not get moved back even further. His oncologist in NY is out this week - so we are hoping to find out more next week. Unfortunately Nathan's local oncologist is out next week.

Luke and I are tired and stressed....the house is a wreck..etc etc. Hopefully tomorrow will be a better day.

Monday, July 18, 2005 8:34 AM CDT

UPDATE

Nathan's white blood count is up a little - he is still pretty low for immunity. His platelets were low - but held pretty good all weekend and so they may actually be on their way back up and so he wasn't given any.

He IS off the antibiotics. He is on neupogen to raise his white count - he got to choose if he wanted to get a new line in his port or to take the line out and get a shot for two days instead. He chose the shots and is happy to be without the line.

He will go back on Thursday for counts.

*******************************************
We had a very good weekend. We did go up to Grand Lake and it was so refreshing to be up in the mountains. We mostly just hung around the house and went to town. We drove through Rocky Mountain National Park on the way home yesterday and while it made for a longer drive we really enjoyed it. Nathan was surprised how cold it was at the top.

Nathan is feeling fine. We expect his counts to be up today (though his platelets will likely still be lagging behind). He goes to the clinic at 10:00 today. At the very least I hope he is taken off the antibiotics.

Mike and Kathy will head home tomorrow. We have enjoyed their visit so much and will be sad to see them go.

I will update on the top of this later after the clinic.

Friday, July 15, 2005 3:48 PM CDT

Well as is usual in the medical world all of our plans have changed.

The scheduling of surgery with intraoperative radiation is hard due to the special operating room and two doctor's schedules so they can not do it until August 31. Obviously this is disappointing - but we have a reasonable plan in place.

Nathan will have 1 or 2 rounds of a low-dose chemo combination - irronotecan and Temador. They will not supress his blood counts very much and we are hopeful he can go to school while recovering. The irronotecan causes diarrhea and Nathan will be given an antibiotic to combat it. That may be a problem given his history. The Temador is in a pill form and the irronotecan is IV, but other than the first few days of making sure he handles it fine we can do it at home. So - it will hopefully be a very easy chemo to do without too much time in the clinic or hospital. The main concern is since we can't do the surgery right away that the tumor not have a chance to spread. The doctors feel that this plan should handle the disease while we are waiting. I just hope that it holds to be true.

Nathan's counts are on the way back up but he is still neutropenic and so he still needs to remain fairly isolated this weekend. We may be off to my brother's cabin for a night just to get out of the house and have a change of scenery.

Nathan's hair is mostly all out. He seems to be taking it OK. Luke keeps his hair shaved very close and yesterday he shaved his dad's head and so now all three of them look fairly bald. I think Nathan got a kick out of it (I know I did).

Overall - Nathan continues to feel good and play as normal. The doctor was impressed with his energy. His platelets are low - but we are going to wait the weekend and see how they do.

Thanks for checking in with us....I hope you all have a good weekend.

Monday, July 11, 2005 6:59 PM CDT

Nathan had a really good weekend.

On Saturday we went for a picnic and he had a great time playing frisbee (he is actually quite good at throwing it) and he was really running around with good energy. The rest of the weekend was spent doing normal weekend things (but not out in public) and he really had almost normal energy - he was just more easily set off due to being tired.

This morning he had a little fever but none during the weekend.

We went to the clinc at 10:30 and didn't leave until 4:30 - so it was a long day. He got red blood and he also needed plateltes again already. He started coughing after the platelets, just like on Friday and this time he got hives too - so he is definately having an allergic reaction. This after after being premedicated - so I guess it is something we are going to have to deal with. He will most likely need them again this week. We are not going back until Friday and he will get them then. He may need red blood by then but we are gambling that we can get him through until next Monday. He is still on the antibiotics the rest of the week and we will reassess them on Friday. We have the schedule better for them - 6, 2 and 10 - but they run for an hour and it is hard for me to stay up until 11:00. Luke is out of town until tomorrow night and then he will take over the late shift. Luke turns 32 tomorrow...we will celebrate on Wednesday.

Mike and Kathy are still here and the kids are loving having them (me too, of course).

I am not sure what the rest of the week holds. We are free from the clinic all week - but can't take Nathan anywhere and we probably should limit his contact with other kids - so we will have to think of some activities.

We got half of his urine results which are slightly elevated for neuroblastoma. That is no surprise - we are glad they weren't very high.

That is about all I can think to write tonight...I feel like there is more - but once again I am just too tired to think of it.

Saturday, July 9, 2005 7:36 AM CDT

Something to be happy about this morning - we are at home and not in the hospital!

Yesterday morning Nathan spiked a fever. I was told to bring him right into the clinic. His fever went down when we got there and then came up some again while we were there. His regular doctor was off and the other doctor is a little less conservative. He had them give Nathan his platelets and some antibiotics and sent us home this weekend with IV antibiotics to give Nathan every 8 hours. He said he trusted us to know if something concerning was going on - otherwise the antibiotics would cover almost any potential infection. Nathan is feeling so good that I am so happy to be home. We got home from the clinic and his grandparents were there and he played the rest of the day until I did a forced rest period in front of the TV. This morning he has woken up very perky and happy. It is so nice to see.

His counts are still on the way down. He will be getting red blood on Monday and probably more platelets next week.

A BIG thanks to whomever anonymously sent me a generous giftcard to a local spa. I will definately use it and I can use the relaxation. That was so very thoughtful and supportive.

Well - hopefully the fevers will stay away and Nathan wil continue to feel good this weekend. We may go on a picnic if he feels good. That is the good thing about him being neutropenic in the summer - we can still get out and do things.

Thursday, July 7, 2005 8:44 PM CDT

Well - the ugly stuff has started.

After running around out and about this morning Nathan had his appointment and his counts are already low. Everyone was surprised. The doctor said his bone marrow definately remembers the chemo. This is not really great because it means that Nathan will not tolerate high doses of chemo very well. It will likely take him a while for his counts to come up. He is starting to get mucousitis (sores)and we are hoping it doesn't get so bad that he can't eat. It is also affecting his bottom. While we were at the clinic he got a very bad nosebleed. It was just gushing and it was way back in his nose where we couldn't stop it and where it was just pouring blood in his mouth. It lasted for a long time and the poor thing was just spitting blood and choking. They gave him some medicine to help his blood clot and some anti-nausea medicine as well. He will get platlets tomorrow even though he isn't quite at the level to get them - he will be by the end of the weekend and with the nosebleeds he just has to have them. He got another long (30 minute) nosebleed when we got home. The poor thing is just exhausted. It was really hard to see him in such bad shape. It is bringing it all back. Unfortunately he is just going to feel even worse for the next week or more. If he gets a fever he will be admitted. At this point I have to almost assume that will happen - I hope not though.

We got word that the preliminary date for his surgery is August 1. He will have a scan here on the 24th and it will be sent to NY. I am sure that date will change - but at least we have a general time frame. I was kind of hoping it would be a little sooner. Nathan is due to start Kindergarten on August 15 and I was really hoping he would make the first day. He still could - but it is just not as certain now.

The port access went really well. He was upset about it before it happened - but when it finally did he didn't even flinch. I don't think he felt a thing. So - that is a big relief! They left him accessed since he will get platelets tomorrow. The platelets don't take very long to infuse so he should only have to be there for an hour to an hour and a half.

I have a feeling there was more I was going to write but I can't really think anymore. I am just really hoping he can avoid a nosebleed tonight.

Wednesday, July 6, 2005 8:46 AM CDT

There is not much going on right now. We are just waiting for counts to go down and back up. Nathan will get them checked tomorrow. He is nervous about having hisport accessed for the first time. I am hoping it isn't too bad because a bad first experience would not be a good thing.

Luke buzzed Nathan's hair yesterday. We knew his hair was thin - but I guess I just didn't realize how thin. He practically looks bald already. Oh well - guess it is good to get used to it. Truth is he is a very cute bald kid - it was just a bit of a shock to see him that way again. He was pleased (or acted please - he definately knows how to convince himself of things) with his cut.

Emotionally - both kids are not doing great. Nathan is of course worried and so he is getting very upset and hyper-sensitive about everything. He keeps complaining that his mouth hurts (no clue what that is about - it is too soon for mouth sores) he complains he is tired and any number of other physical things. When I say complain - I don't think that really describes it - he is complaining but in a worried way. I explained to him yesterday that any things he is feeling are just normal things and not cancer things and he does not need to worry about them. He is also getting nosebleeds for some reason. His platelets are not low yet - so it is just dryness and irritation. He gets upset about them though. He has also been up in the middle of the night with "bad dreams" but he is very calm and awake and obviously waking up and being lonely and probably thinking about things in his bed.

Julia is very emotional and acting out. She has taking to just plain screaming when she gets mad. She is willfully disobediant and just obviously is upset about all the goings on. She is very perceptive and so I know she is worried about Nathan. When she is not being horrible - she is being very sweet. It is one or the other. I don't really know what to do for her. I am having to punish her for her behavior but that is hard because I try to send her to her room when she is just screaming and carrying on but she won't go and it is hard for me to pick her up and put her there.

Now - the two of them are also having plenty of fun together and being happy. Like I said before it is one extreme or the other. I have hardly the physical or emotional energy to deal with it all. Thank goodness Luke's parents will be here soon.

Nathan just came to me all upset because Julia was playing with something he wanted. He says she is making him upset. I have been trying to explain to him the last few days that it is up to him whether he gets upset about something. He just falls apart at the littlest things - it is driving me crazy.

Well - enough complaining from me I guess. I know that things could be much worse - I guess it is just an adjustment period right now.

I just wish I could do more for their emotional states - I feel very helpless.

I will update again after his appointment tomorrow.

Monday, July 4, 2005 10:14 AM CDT

Happy 4th of July!

The head cat scan is normal. That is such a relief.

Nathan will be getting out of the hospital in an hour or two if all goes well. He is feeling well. He hasn't had any nausea since yesterday morning. The chemo he had the first 2 days is really the one that made him feel bad. The one he is still having yesterday and today doesn't have too many side effects so hopefully he will not have much more, if any, nausea.

He is in very good spirits. The doctor asked him what he was going to do when he got home and he said "play!".

He will probably continue to feel good until the weekend when his counts should start to drop. They may not drop until early next week. When his counts drop he will be tired and feel a little sick. Fortunately his Grandpa Mike and Grandma Kathy are coming to visit on Friday and so he will have good company!

We have no plans for today. We will probably cook out and maybe find some sparklers. There is no easy way to see fireworks from our house and we don't want to make a big trip to do it - so we will skip them this year.

Nathan had some visitors yesterday. His friend Rachel came and he had a really good time playing with her and being silly in his bed. It is nice for him to be able to play when he is stuck in the hospital. Thanks for bringing her Kate!

Well - it looks like they are ready to disconnect him so I will update again soon.

Saturday, July 2, 2005 7:54 PM CDT

Nathan had a pretty good day today. As of about 4:00 pm his nausea kicked in and he felt pretty bad for awhile. He finally threw up around 6:00 and then immediately wanted his food back and felt better. He is also looking like the toxins have hit him. I'd kind of forgotten the look - but I remember it now.

Julia and I came in this morning and we all stayed with Nathan all day. They had the playroom open for a little while and that was great. Unfortunately on the weekends the playroom is only open if they have volunteers so on this holiday weekend I am not sure he will be able to go back in there. Luke took Julia out to lunch for a while. She wanted to be with Nathan - but also had some cabin fever. Luke took her home after dinner.

He is done with 2 of the 3 chemos now. He just has topotecan the next two days. He had cytoxin the past two days and with that they have to pump so much fluid through him that he has to pee every hour or so. It will be nice not to be doing that tomorrow.

His cat scan will either be tomorrow or Monday - we are not sure which day yet.

That is about it for now. I am hoping for a night without too much nausea.

Friday, July 1, 2005 2:16 PM CDT

Friday night....

Nathan did fine with chemo today. We wouldn't expect him to start feeling bad until tomorrow afternoon at the earliest. He had a good time playing and watching videos. Luke and Julia came at dinner and they played together and watched a video together in his hospital bed. It was very sweet to see them lying there together.

Julia was very upset to be going home without Nathan and Daddy. She was very sad to be going to bed alone. It is enough to make me wish sometimes that they didn't have such a close relationship because it tears her apart to be away from him. I don't know what it would do to her to lose him.

Julia and I will go in again in the morning and will just see what we feel like doing during the day tomorrow.

I am bushed since I have been up since around 4:30 this morning so I am going to bed!

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

We are encamped in the hospital waiting for the chemo to arrive. We got the most isolated private room in the pediatric ward. A nice perk - but makes me realize how the medical world views Nathan.

We are in room 3514 at Memorial. If anyone local wants to visit us you can call us at 365-5538 and as long as we are up to it we'd love to see you. We will be leaving sometime on Monday. Luke and I plan to split time but also spend quite a bit of time with all four of us here. Nathan said he would not have any fun being in the hospital without his sister - so we are going to try to have them together as much as can be tolerated.

Nathan has recovered just fine from his port surgery and it isn't bothering him at all.

He will be having a head CT later on in the weekend. We thought it would be good to have a complete picture of everything going on just in case we were to find something in there. It would be devastating if we did find anything in his head so please start your prayers for a clean CT scan.

I will update on top of this later.

Thanks for checking in.

Wednesday, June 29, 2005 3:37 PM CDT

Nathan's surgery went fine. He had a bit of trouble afterwards being quite nauseous and throwing up so we stayed in recovery for a while. He is a little sore but no big deal. He is currently playing and just a little bit tired and emotional.

He is definately worried about what the tumor means for him. He asked me what would happen if they didn't do chemo and he also out of the blue started asking questions about what people look like in heaven. When he went to his babysitter yesterday the first thing he said to her was that he has another tumor.

Tomorrow around noon we will hook him up to fluids to hydrate him for chemo. He has a little backpack he can wear so he can still move around the house with it. Friday he will go to the clinic and then over to the hospital to start chemo.

My sonogram went OK. This little baby is laying facing down on its knees with its head down to knee level. So we could not get a look at its face and we could only see the heart through the back and so not a clear look at its anatomy. All its measurements were right on track and the parts we could see looked good. When I go back (in 4 weeks or whenever we get back from NYC) they wil do another one. We did not find out the sex even though with its bottom in the air it would have been really easy. Makes me wonder if it is a girl if we didn't even see anything accidentally. It was really fun to see the baby and it was pretty sweet laying like that. Julia slept like that for a few years and we still occassionally find her asleep on her knees with her bottom in the air....very cute.

I will most likely update again on Friday.

Monday, June 27, 2005 7:50 AM CDT

Update Tuesday, June 28, 2005

Nathan's port surgery is scheduled for 7:30 tomorrow morning. He should be home by early afternoon.

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

Monday, June 27, 2005 6:23 PM CDT

Ok - well we have a plan in place.

Tomorrow Nathan will meet with the surgeon here and town and Wednesday morning he will have a port placed. A port goes under his skin and then is accessed by a special needle when they need to use it. This needle can stay in for several days. When not in use he can swim and bathe and play as usual. We felt this was a better option for Nathan than having a broviak. He may still need a broviak later if his disease progresses. The surgery is out-patient and he will come home afterwards.

Friday morning he will go into the hospital and start chemo. He will have chemo for four days. For those interrested he will be having Vincrsitine,high-dose Cytoxan, and Topotecan. He is only doing it in the hospital because otherwise he would not be able to start chemo until Tuesday in the clinic and we did not want to wait that long to begin.

This is strong chemo and he will lose his hair and his blood counts will bottom out. We expect he will need blood and platelet transfusions and he will be neutropenic (no/low white blood cells) for several days.

When his counts recover from chemo we will travel to New York and he will have surgery. I would imagine they will do some scans preceding surgery. They will do intra-operative radiation therapy during his operation where they can directly radiate the area.

At this time I do not know whether or not they will take his kidney out. I imagine they will not make that decision until we are in New York.

What happens after surgery depends on many factors and so after surgery we wil reevaluate his disease status and go from there. With relapsed neuroblastoma there is no standard plan to follow. Decisions are made and changed on a daily basis.

We have told Nathan. He took it really well. He wanted to know why the tumor grew again and he had some questions about the port. He then asked to get back to watching Scooby Doo and I am sure he is mulling it over with more questions to come. In fact - as I write this I hear him asking Luke more about how the tumor grew. So - we will just try to answer his questions as they come. We hope there will not be too many that we will have to answer by telling him we don't know - because that stresses him out - but as I just wrote - there is alot we won't know. Julia was concerned about who was going to take care of her and we reassured her that when possible she would have either her mommy or daddy home with her.

So - we are ready to start the battle. We feel very confident in the doctors' decisions and we know we have a good team of doctors in place.


********************************************
We have actually had a good weekend. We knew that there was nothing to be done until today and so we just had a normal weekend. Friday night Luke and I had already planned to get a babysitter and go to see Star Wars and we decided that we should not change those plans. Though I certainly was thinking of things during the movie it was a good diversion.

We did errands and church and just had a normal good weekend.

Ok - here is the very preliminary scoop. I just got an email from the doctor in New York saying they recommend one round of chemo and then surgery. He said he sent the details to Nathan's local oncologist. I will call him this morning and get him to check his email and then find out the details. I am assuming we can do the chemo here at home.

I will update this later with more details when I get them.

Friday, June 24, 2005 1:54 PM CDT

Well - we got bad news today. Nathan has relapsed with a 2x2x3 cm tumor at the site of his original tumor (on his right kidney). The good news is that his bone marrow is clean and his MIBG scan shows no other cancer.

We are not sure what the next step is. His local oncologist thought that surgery would be the first step. We have a call into his doctor in New York to see what he thinks we should do. We hope to travel to New York very soon and get moving on treatment.

We have not told Nathan yet and we will not tell him until we have a plan of action.

Keep those prayers coming.

Thursday, June 23, 2005 3:36 PM CDT

Scans are done. We got the preliminary bone marrow results which came back negative (good). His MIBG scan had a spot light up. The radiologist came and looked and said it is in the same place he has always had some "uptake". She was going to compare the intensity to the last scan. He also had a cat scan and so if there is something there - I guess they will see it. I am trying not to worry about it too much.

Poor Nathan threw up during the cat scan. They said it was because he had food in his stomach. Well - he hadn't eaten in two hours but he had to eat a meal in between the two scans so I don't know what they expect us to do.

We will update when we get more results. I don't expect any until tomorrow afternoon at the earliest and more likely Monday afternoon.

Tuesday, June 21, 2005 7:11 AM CDT

Good morning.

Scan week begins today. Nathan will have a bone marrow aspiration and biopsy at 11:30. Tomorrow he has an MIBG injection and Thursday he has an MIBG scan and CAT scan. Hopefully they will not have to do the additional MIBG scan Friday morning. If he has too much of the radioactive isotope during his first scan they have to rescan. We have found that a little laxative helps prevent this from happening.

I have found wildly differing opinions about me being around Nathan while he is "radioactive" but have been comfortable with the explainations that say it OK. It has a very short half-life and I really just need to stay away from his bodily fluids.

Scan time is always stressful. Nathan is getting old enough to understand why we are doing the scans. Yesterday I told he might be having the bone marrows today (we didn't know for sure until 3:00 - isn't that lovely?). Later he started getting stressed out about not knowing and was saying "Mommy, but they have to do my back bandages tomorrow!". It was really sad to see him worry. Back bandages are what he calls the bone marrows since he doesn't remember anything - just comes out of there with bandages on him back. Recently he has had me explain to him what exactly they are doing to him. I have had to delicately explain that they stick a large needle into his bones!

I wanted to write about his birthday since I haven't gotten around to that yet. He had a John Deere theme that he had picked out from a catalog. I went to the grocery store with cake toppers in hand and they made a really wonderful cake with a farm scene on it. He was very pleased with it. His party was at a place that has a big room full of inflatable jumping things and slides. He and his friends had a blast jumping around. After jumping we retired to the party room and had cake and presents. All in all - it was the party he had wanted and he was very pleased. Afterwards we went out to dinner with my brother and his family.

Nathan has been telling everyone since then, "I'm Five now!".

We bought little bikes for Nathan and Julia. Julia seems pretty much unable to learn. Nathan is doing well - but he doesn't like when things are hard for him. He gives up really easily. So it is a bit of a challenge.

That about sums up what we have been up to. Please send all your prayers and positive thoughts our way for CLEAN results while we test this week. Nathan's friend Joshua, in Kansas, is also testing and scanning this week so please send some his way too.

Sunday, June 19, 2005 12:49 AM CDT

Happy Father's Day to all the dads!!!

I want to take the time today do tell you all what a wonderful father Luke is.

Since I am the one who writes this journal, you don't hear very much about Luke and all that he does for his family.






Luke is a very loving father. He constantly tells the kids how much he loves them and gives them lots of hugs and kisses. When they cry out for a parent it is equally as often "Daddy" as it is "Mommy". He is fully involved as a dad and caregiver. He and Julia have a special bond from the times they spent together while Nathan and I were in New York. She adores her daddy and I love seeing their special relationship.

Part of the reason Luke is such a wonderful father is what a wonderful husband he is to me. Our children see that he is loving,considerate and helpful towards me and that is a wonderful model for them.

Luke is also an excellent provider for our family. It has been extremely difficult and stressful for him to continue to work when he knows his child is sick and in pain and I am overwhelmed with it all. For him to not be able to provide care during these times has been very hard on him. His being able to stick through and provide for our family these last few years is a big accomplishment and I don't think he realizes just how proud I am of him.

I could not think of one way that Luke could be a better father. I am so lucky that he is the father of my children.

Wednesday, June 15, 2005 3:26 PM CDT

Well - we are home. The kids had a wonderful time but were glad to be home. We are all on Eastern time and we all awake at 5:00 am this morning.

I will put some pictures on the photo album page.

We are already busy. Nathan and Julia are at the sitters today. I had an OB appointment this morning and have been running around getting everything ready for his birthday party tomorrow. Tonight I will go to choir practice and so I am getting a sitter for Nathan and Julia. Luke is out of town until late Friday night.

My OB appointment was fine. Everything is as it should be. I can now feel the baby moving around. I have an ultrasound in two weeks - HOWEVER - Luke and I are in that minority who enjoy NOT knowing the baby's gender - so we will not be finding out if it is a boy or a girl until he or she is born.

I have no word on when Nathan's bone marrows are yet. I hope to know for sure in the next few days.

I can't believe Nathan will be FIVE tomorrow. On the airplane home I had Julia in the bathroom and the stewardess talked to Nathan and found out his birthday was coming up. When the plane was landing the pilot announced to everyone that his birthday was on Thursday and everyone clapped for him. He was very pleased. I couldn't help thinking to myself what a miracle it is that he is turning five and what an accomplishment it is for him to have gotten through all he has and he deserved the applause! I am grateful beyond words that he is turning five tomorrow and doing so in good health. On his third birthday he had chemo. On his fourth birthday he had antibodies. On his fifth birthday he will be having a party with his friends - bouncing and running around. What a blessing!

Thanks everyone for all your birthday greetings. I will be showing and reading them all to Nathan.

Saturday, June 11, 2005 3:21 PM CDT

We are having a fun time in Hilton Head. Nathan particularily loves jumping in the waves.

Nathan's scans are set for Jun 22 and 23. His bone marrow aspirations still need to be scheduled but will hopefulyl be on the 22nd.

We had lunch at the Salty Dog Cafe yesterday. Click
here to see us on the webcam. You may need to click on show picture and then pick 12:42 and click on that to see the picture.

I will update again when we get home.

Monday, June 6, 2005 5:49 AM CDT

Quick journal to say that the kids and I are off to Hilton Head Island this morning to visit my parents.

Nathan saw his oncologist and we decided he will have scans the week of June 20. I will post more details when we have them.

Hope everyone's summer is getting off to a good start!

Monday, May 30, 2005 9:21 AM CDT

Hello - sorry it has been so long since I updated.

We went to Arizona last week and had a great time. The kids are so good on long car rides that the drive was no big deal at all. The drive was about 12 hours plus stops. We picked up Luke's brother, Josh, halfway there - in Albuquerque and proceeded to the Phoenix area. We spent the weekend hanging out with good friends and their kids. All the kids LOVED the pool and since it was 115 outside - that was a good thing! Nathan and Julia because very comfortable in the water and were swimming around the pool in their "floaties".

On Monday morning we left Phoenix and drove to Tuscon to visit my aunt and uncle. Luke caught a flight home that evening and the kids and I left on Wednesday morning. Nathan and Julia loved learning about the plants and cacti in the desert. My aunt took them on several walks around her property looking at all the plant and wildlife.

We drove home in two days, stopping in Albuquerque for the night. Once again, Nathan and Julia were very good on the ride.

So - we've been home since Thursday. The trip really tired me out. I had very bad allergies to something in Phoenix and am recovering from that. I am still somewhat nauseous and have an almost constant headache. So - that is my excuse for not updating!

Today, Luke is working despite the holiday and the kids and I will go to a friend's house later for a cookout.

Tomorrow, Nathan has appointments at the ear doctor and the oncologist. These are routine checkups. At the oncologist he will just have a physical exam and we will discuss the timing of the next round of scans.

The kids and I are off to Hilton Head Island next Monday to visit my parents. I am not exactly ready to go on another trip already but I am looking forward to being there!

When we get back we will prepare for Nathan's birthday on the 16th!

So - that's our update. I don't expect to learn anything interesting at the doctor appointments tomorrow, but I will update if I do.

Monday, May 16, 2005 8:56 AM CDT

We have had another good week. It was filled with fairly normal stuff. Nathan had preschool. They had several playdates. I realize I fail to mention what Luke is up to most times. The answer is usually - work as usual. This past week he has been working nonstop and will also be doing some travelling in the next few weeks. I had my 12 week OB appointment on Tuesday. The doctor was having a little trouble getting the heartbeat on the doppler and so took me across the hall for a quick ultrasound. It was fun to see how much the baby had changed from the blob it was at 8 weeks. Anyone interrested in seeing it can look here. It is hard to see for those not used to looking at ultrasounds - but the baby's face is ont he left side - its hand and foot are sticking up.

Nathan's last day of preschool is Wednesday. They are having an ice cream social on the last day. I can't believe it is almost over and Kindergarten is next for him.

I think I may take him into the oncologist's for a check-up at the end of May. We need to figure out when his next scans will be. With our busy summer schedule they will either have to be the 3rd week fo June or the first week of August. We don't really want to even do them - but I suppose we should. We are enjoying this medical free time and it has been nice to be able go along for awhile with a normal life. The thought of finding a relapse terrifies me and it would be even more heartbreaking for it to happen right before he is about to get to go to Kindergarten. However - the prevailing theory is that it is better to find a relapse early so I guess we need to keep scanning.

We are off to Arizona soon. The kids and I are going to take a side trip to visit with my aunt and uncle in Tuscon after we leave Phoenix. It means a long drive home for me (Luke will fly home) but I have decided it is well worth it to make the visit.

Well - that is the update around here. Hope you all are doing well.

Monday, May 9, 2005 9:46 AM CDT

Hello - I hope all you moms out there had a happy Mother's Day.

Remember that slight cold Nathan had? Well - he is over it, but I got it and it was bad for me and I spent the last week sick. So we didn't do much. I managed to do the bare minumum of running the kids around. Unfortunately I have a cough and that doesn't mix well with morning sickness. So - I am afraid I don't have much to write about for last week.

I did have a good Mother's Day. I felt well enough to go to church and sing. After church we went out to lunch. We just relaxed the rest of the day and had dinner and an ice cream cake for dessert. It occurred to me that I have now had more Mother's Day since Nathan's diagnosis than before. Wow! I am so thankful for every day with my children and especially thankful that Nathan is still here with us - seemingly healthy and happy.

Nathan did get his immunizations last week. He did really well - I am so proud of the way he deals with such things. He is now at the point where we will draw blood to check if his immunizations have taken. After that I think he starts getting some different ones. He has been getting 4 at a time.

I go to the doctor tomorrow for my 12 week OB visit. I can't belive the first trimester is almost over. I am now in the unfortunate stage where none of my clothes fit and maternity clothes are too big - so if you see me - please ignore how horribly I am dressed!

The kids, especially Julia, have been telling us here and there what kinds of things we will need to have for a new baby It is very sweet. What we do need to do soon - is get our basement turned into two rooms instead of one big room so that Luke can have is office down there and we can also have a playroom too.

Nathan only has 7 days of preschool left! I goes his usual 4 days this week and then next Wednesday is his last day. I feel sad for him that it is ending - he realy loves it. I really like his teachers and his classmates moms - but the nice thing for me is that Julia will be in the morning class next year with the same teacher and 2 siblings of his classmates.

After preschool ends we are off to Phoenix to celebrate a friend's (Jim Barton) law school graduation and to hang out with several friends for a long weekend. We are renting a big house with a pool and it should be a really fun time.

Thanks for checking in!

Monday, May 2, 2005 6:45 PM CDT

Hello -

There is not too much going on here - which is a good thing! We have been having atrocious weather - cold, snowy and cloudy, and have been mostly staying inside.

On the medical front - Nathan has some immunizations on Wednesday. I don't know when we will do scans next. I also don't really care to know right now - so it is fine with me!

Nathan has a little cold, but other than that seems really good. Julia seems to have bounced back from everything and is doing well too. Nathan went to a birthday party on Saturday at a place with large inflatable jumping things. I was happy to find that his hip did not bother him afterwards. So - hopefully that is on the mend.

We have some happy news to share. We are expecting a new baby in November! I am due on Thanksgiving Day. We just told Nathan and Julia about it this weekend and Nathan seemed interrested and Julia was very excited and happy. Nathan immediately started asking techinal questions like "what does the baby do while you are eating dinner?". I have been feeling fairly sick the last week or so. Nothing too awful - but I am trying to take it easy when I don't have to be running around doing things. I have had a sonogram and seen the little bean with its beating heard and that was so wonderful to see.

So - that is what is going on with our family right now. I hope all is well with all of you.

Monday, April 25, 2005 9:39 PM CDT

************************************************
Update Wednesday April 27, 2005 4:03 MDT

I just got back from Julia's appointment. Her echo and EKG are normal and platelets are normal and SED rate is almost back to normal (down to 22 from 103). So - it looks like she will not suffer any side effects from this illness and we can move on. We are very relieved. She is happy she can now run around again. She will have a follow-up echo in September.

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

Nathan had his ortho appointment today and it went well. She definately believes he has more fluid on his hip and said that if he is active it will take 3-4 weeks to heal. The literature I had read about transient synovitis said that is does not recur, but she said that that is outdated and she has found that it does recur - she said she sees it about 3 or 4 times a year. Since the healing time is so long - it makes sense that it was not yet healed when he did all the walking and the fluid built back up.

She spent a lot of time looking over his xrays and MRI with me on her computer. His hips look perfect - she could see no abnormalities. Interestingly she zoomed in on his femur near the growth plate and showed me three distinct lines. She said this happens while a child gets very sick. She said he must have had 3 bouts of fever and neutropenia - which is true. She was very into all the anatomy on the MRI and it was very interesting looking at it all. She is the doctor who diagnosed Nathan with neuroblastoma and we had always thought she did an outstanding job, and I thought so again today. We are now on her nurse's list of people to get right in and accommodate if we need anything. She is very sympathetic to the fear that leg pain in Nathan causes and will see him on a moment's notice anytime we want. She said if his hip isn't healing like we feel it should she might get him into some pool therapy for a week or so to see if it helps.

I took Julia for her blood draw this afternoon. She just screamed in terror. Of course, they had to poke her twice....UGH! She was pretty traumatized, but I think she will get over it once again. She and Nathan have been giving her ponies IVs lately. In fact, the other day they had to be poked twice because the first time didn't work. Both of them can identify with that!

I will still try to post some pictures soon. It is a matter of locating the cable. The chaos in our lives the past month has really taken a toll on the house and it is an absolute wreck. I don't have the energy to do much about it at the moment either. On the bright side - Nathan and Julia have been having lots of fun playing with the open suitcase on the family room floor. They each get in half and Julia actually straps herself into her half and they pretend it is a car. The two of them just play and play. They really are the perfect playmates. Most of their playing is role-playing and they really get into it. It is such a wonderful thing.

After a few weeks without, we went back to church yesterday. Nathan and Julia really love Sunday school. Julia told us some bible story that we don't know (not that hard to do between the two of us). It is really cute. There have been lots of discussions lately about God, Jesus, Heaven and death. I hope I am giving the right answers! Nathan is such a critical thinker. The other day he said, "if babies come from Mommy's tummies, then where did the very first baby come from?". I explained the two schools of thought on that the best I could. Then we had the age old question from Julia about where was heaven and couldn't we just drive our car to get there?

Well - I have actually rambled a little - not easy for me to do. Thanks for checking in.

Friday, April 22, 2005 4:21 PM CDT

Well - I guess I will give all the details - it might get long though.

Friday morning at 7:30 a limo picked us up at the house and drove us to the airport in Denver. The kids were very excited to be in a limo. I was a little less happy beause due to their car seats I had to ride backwards in the limo - which is not great for me with motion. Check in was a breeze because they booked us on Frontier airlines and Nathan and I both achieved frequent flyer status with them last year going back and forth to New York so we got to go the the front of the check-in line. They gave us 3 seats together and 1 apart. My wonderful husband offered to sit with the kids. They were amazingly good. They didn't make a peep. Watched TV, ate, colored and played with play-doh.

We arrived in Orlando without a hitch and were met by a representative from Give Kids the World. They took us to car rental and we signed a peice of paper and were on our way. We went to Give Kids the World (more on what that is in a moment) and checked in. We were all set to stay at the Animal Kingdom Lodge since GKTW (abbreviated) was booked up. Well- when we arrived they had a cancelation and gave us the choice of staying there. After some thought we took them up on and and are so glad we did. Give Kids the World is a resort for families going to Orlando for a wish trip. They have 96 2 bedroom villas for the families to stay in. They also have free meals, free ice cream parlor and lots of activities. There is a carousel, train, 2 pools, and multiple game rooms. It was perfect for Nathan and Julia. So, after we got there we partook of the activities and I went to orientation and got our tickets.

Saturday we went to Sea World and met our friends, Max and Mindy and their kids, Maxx and Miles there. They recently moved to Florida from Colorado Springs and so it was fun to get to hang out with them. We brought a stroller for Julia but let Nathan walk the whole time (more on THAT later). We saw two shows and played in a huge rope climbing area. They loved the shows and we got great seats due to Nathan's Give Kids the World button. We left around 3:00 and went back to GKTW. My parents arrived in town and came over and the kids got to show them all the amenities before we all went out for dinner.

Saturday night Nathan started to complain that his leg hurt. By Sunday morning he was in extreme pain and couldn't walk. It ws the same hip that he had the transient symovitis in. We were set to go to the Magic Kingdom, so with lots of tylenol and ibuprofen we went. We got a special card with a stamp that allowed us to use Nathan's stroller as if it were a wheelchair. This allowed us to take the stroller right up to the ride and transfer him. It was somewhat painful for him to be moved in and out of his stroller - but he beared with it in order to go on the rides. He actually got to ride on the "It's a Small World" ride in his stroller on a special boat. We rode on most every ride they have there. We didn't have to wait in any lines so we had plenty of time. Nathan adored the Thunder Mountain Railway and Goofy roller coasters. He and Julia both agreed that Dumbo and the Magic Carpet rides were the most fun also. There was much snacking and riding and then we parted ways with my parents. They were going to stay at the park and we went to dinner (Steak and Shake - my favorite!) and then to BED!

Monday we went to the Animal Kingdom for the morning. We enjoyes seein the animals but didn't want to spend the whole day there. There is a ride that simulates a safari and there was a scenario about poachers. IT turns out Nathan was listening very closely and he was actually quite concerned about the "hunters" and it was very difficult to pursuade him that it was all pretend. In the afternoon we went back to GKTW and went swimming. They had a BLAST and itwas nice to take a break from the parks. Nathan was starting to walk on his leg a little by then. Sunday night we went to downtown Disney and had dinner at the Rainforest Cafe. Nathan and Julia loved the setting there and the fake thunderstorm and animatronics. It was a very nice dinner and once again we went home and went to bed!

Tuesday we went back to the Magin Kingdom. Nathan was walking much better and we had to force him to stay in the stroller to rest his hip. We went on all the favorite rides again and spent the whole day there once again. It was really nice to revisit what we had just done and I think the kids enjoyed the second day even more than the first. We went over to the Polynesian Hotel for dinner with thoughts of returning to the Maginc Kingdom for fireworks, but we were all just way too tired for that and went back and went to bed.

Wednesday was our last day and we had a leisurely morning at GKTW while the kids played with all the activities there. We went out to lunch (Steak and Shake again!) and back to GKTW for ice cream and then back to the airport. Nathan was very happy to find out they would be showing the Incredibles on the plane and he sat and watch that without a word. Julia watched TV and was also very good and quiet. All was fine until about 45 minutes from landing when we were told that the Denver airport was closed due to weather. We circled for a while and then headed to denver. When we were almost there we were told it was closed again and had to land in Colorado Springs. It was a very bumpy ride down and I actulaly got sick. We were then told we would sit on the airplane in Colorado Springs until the Denver airport opened. No one was allowed to get off. Fortunately, Nathan and Julia mostly slept through all of this. So - we sat there for a few more hours and finally got to go to Denver. We caught our limo and got home around 1:00 am.

We spent Thursday recovering from all of this. Today it came to my attention that Nathan's leg was still bothering him somewhat so I took him to see the pediatrician. She talked to the oncologist and they decided to send him to an orthopedist on Monday. I am not really concerned about this being cancer considering wht we just went through - but it does appear his hip has not healed and we need to make sure we know what is going on. We do like the orthopedist. She is the one who pushed for all the tests and diagnosed Nathan so quickly two years ago. Hopefully we will figure this out and move on. I will talk to the oncologist later today to hear his thoughts.

Meanwhile - Julia seems to be doing fine. She will have bloodwork done and an appointment with the cardiologist on Wednesday and we are crossing our fingers that her echo is normal and her labs are trending down to normal.

I have to admit - I am SO tired of all things medical. I am really hoping for resolution with both kids for at least a few weeks.

So - that's about it.....I will update later with more medical happenings when we know anything and I will post some pictures soon too.

Thursday, April 21, 2005 12:47 AM CDT

We are home. Luke and I are very tired, the kids don't seem to be tired at all, and we all had a good time. I will update with more detail when I get the energy!

Wednesday, April 13, 2005 6:59 PM CDT

Julia saw the cardiologist. They now say she definately has Kawasaki's disease. Her platelets were 964,000 which is even higher than when she was treated (normal is around 300,000). Her sed rate (measures inflammation) is still extremely high at 103 (normal from 1 - 10). Her echo showed some changes in her coronary arteries but no coronary artery annuerisms (which is good). These slight changes are something they usually see at diagnosis and they should go away in a week or so. Her doctor said he personally has never seen a child develop the annuerisms more than two days after treatment if they don't have them already - so he is prety confidant that she won't develop any.

He did caution us that she really should not be running around or exerting herslef in any manner. Her heart is inflammed and she could potentially cause heart damage if she is too active. That said - he encouraged us to go ahead with our trip so long as she rides in a stroller and we keep her from running around. He said we probably need to go and he is right.

I have had to keep her from running some today and I hate it. I love watching my kids run around. When Nathan was sick and didn't run for a year I realized how wonderful it is. I hate to tell her not to. I am afraid she will lose that impulse.

So - that's the word.

Please pray for no more complications for Julia.

Susan

I can't believe that both of our children have now developed rare childhood illnesses.

Monday, April 11, 2005 7:53 PM CDT

Hi - sorry I didn't update sooner. Julia is doing just fine. She has had no more nosebleeds and other than being a little more tired than usual is almost back to normal. She is much better about taking her aspirin. She has to have it every six hours which mean she has to be woken up for it and then also take it right when she gets up. Tomorrow she will have blood drawn and Wednesday morning she will see the cardiologist. She is still at risk for developing coronary artery annuerisms and so I am guessing they will do a follow-up ultrasound.

Nathan is doing so well. About 6 weeks ago he got sick and then he developed the transient synovitis and during that period of time - he really had a lack of energy. Well - he has totally rebounded from all that and had load of energy and looks so well. It is wonderful to see him like that.

We had an actual blizzard yesterday. Today the kids went out to play and had lots of fun in the giant drifts. In true Colorado fashion - it will be in the mid-sixties tomorrow and so the foot of snow or so will all be gone very soon.

After Julia's Dr. visit on Wednesday we should know if we can go to Florida or not. Keep your figers crossed for us - the kids are so excited about going (as are Luke and I) and we could really use some good news and fun.

Thanks for all the support and emails. I haven't been able to get back to all of you who emailed but I so appreciated it!

As far as Nathan and doctors - he is due for more immunizations and a chek up with the hearing aide doctor. Luke and I are undecided if we will have him do an MIBG scan and CT scan soon, or if we will elect to wait 3 months and do the whole shebang. We are very reluctant to have more scans and tests right now.

Well - thant's about it - I will update on Thursday about Julia's visit.
So - I will update aga

Friday, April 8, 2005 9:02 AM CDT

***************************************
1:50 pm MDT

Julia's doctor managed to get her nosebleed to stop and so far it hasn't come back. I am sure it will at some point, but I feel more comfortable with being able to stop the next one. She is currenty feeling well and she and Nathan and playing very nicely together. It is clear they missed playing together. They are wonderful playmates.

As for Luke and I - boy we are in extremely rough shape. I don't think I could adequately describe it, but we are definately on the brink of emotional and physical collapse. We really need at least a week of no drama around here to even begin to recover.

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

Julia completed her IVIG infustion yesterday. It should have been complete about 2:00 am the night they were in the hospital , but someone messed up and didn't notice that the pump switched to IV fluids. They didn't catch it until the next morning so she had to stay longer yesterday while they gave her the rest of her infusion. She felt good most of the day and then her neck started hurting late in the afternoon.

She is on high doses of aspirin every 6 hours. It has been a struggle to make her take it. Even worse, her nose is bleeding. It bled some in the night and stopped. It has been bleeding for 1 and a half hours this morning with no signs of stopping. I am waiting to call the doctor when the office opens.

At least we are home....

I'll update again later.

Wednesday, April 6, 2005 3:49 PM CDT

Luke here. Susan would update, but she is in the hospital with Julia. Yes, she was readmitted this morning and is being treated for Kawasaki Disease. She went and got blood work and then was seen by the cardiologist. He decided to admit and treat, but told Susan he didn't think she had KD, but that he couldn't rule it out and with the potential side effects to the heart if it goes untreated, he basically has to treat if cases get to him. So, no one really thought she had it, but there was enough uncertainty to treat. The pediatrician at the hospital that was completely convinced she didn't have it, told Susan that she just might actually have it when her blood work came back early this afternoon. Her platelets and sed rate (non specific inflammation indicator) were continuing to climb. Her platelets are getting especially high, which is a major piece to diagnosing KD.

So, she will receive a 12 hour infusion of gamma globulin (purified antibodies) and high doses of aspirin to reduce risk of the heart problems. Susan is with her now at the hospital. I'll be taking Nathan down after work and then after we spend some time together, Susan and Nathan will come home and I'll have the night and morning shift. She *should* come home tomorrow and apparently if this is KD, or even just a simple infection, the IG infusion should have her feeling much better very shortly.

Ugh.

Tuesday, April 5, 2005 6:00 PM CDT

We took Julia to her pediatrician's office today. She still has a fever and sore neck. Some of her labs came back abnormal. Tomorrow she will have more labs and see a pediatric cardiologist and hopefully he will be able to give us more information.

Hopefully, this is just a virus follwed by an infection. They gave her a antibiotic shot today.

Nathan got to go to preschool today - so he is happy. He is off to the babysitter's tomorrow so may or may not get to go.

I will update tomorrow.

Monday, April 4, 2005 8:11 PM CDT

Well - we've been to the hospital - but this time with Julia. She has had a high fever for 5 days, very red eyes, various rashes, and a sore neck. I took her to her pedaitrician on Saturday and she said Julia had a virus. He neck started hurting badly yesterday afternoon and so I took her to urgent care. The doctor there was concerned it was Kawasaki's disease. We spent the rest of the night in the ER, where the doctor was also concerned. They admitted her and the doctor in the peds ward was convinced it was just a virus and sent us home. So - we are in a kind of bad situation where we are not sure what is wrong with her. If it is Kawasaki's disease, early treatment is important to prevent life-threatening heart problems. So - we are quite uneasy about this. She still has a fever and a sore neck but her other symptoms are subsiding. She will have some blood work done tomorrow and then go see her pediatrician.

I hope things become clearer for us between now and then.

Nathan is just fine - if it is a virus - he and the rest of us don't have it. It was so strange doing the hospital thing with Julia instead of Nathan.

I'll keep you updated.

Friday, April 1, 2005 3:19 PM CST

First off - in case you missed yesterday's news the bone marrow is all clear!

I wanted to write today because today marks 2 years since Nathan was diagnosed. I can't even describe how incredibly lucky we feel that 2 years later Nathan is here with us, happy and healthy. I was so afraid yesterday that we would be beginning the fight all over again today. How thankful we are that we are not! Two years ago I really could not imagine what our life would be like at this point. We are, of course, worse for the wear in a lot of ways, but also enriched in many more ways from this experience.

2 year cancer survivor!


Thanks to everyone for your continued support and prayers for Nathan and our family. We couldn't have made it without you.

Thursday, March 31, 2005 6:01 PM CST

All Clear!!!!!!

Bone marrow and biopsy are both clear.

We are very relieved. We still need to do a MIBG scan and CT scan as part of his quarterly workup, but we are going to hold off until we get back from Disneyworld.

Thank you everyone for all your thoughts and prayers.

Wednesday, March 30, 2005 10:08 AM CST

***************
Update (3/30 4:36 PM MT)
Luke here. I just got off the phone with Nathan's doctor. Predictably, the other doctor had to be out of the office today so he did not get to the hospital to review slides with the pathologist. So, we have another day of waiting on bone marrow results. We are still seeing other test results tend to be good. They reran his blood labwork and the more accurrate indicator of non-specific inflammation was normal. It had been elevated when he was having his hip pain. His counts are also all very normal (for Nathan anyway), which is a good sign. So, we just keep waiting and hoping. I know many of you have been checking frequently today and we thank you for your continued thoughts and prayers.
***************

The bone marrows went fine yesterday. Nathan is such a trooper. I told him the night before about it and that when he woke up he could have apple juice and jello. He was excited about that. He was excited in the way that I knew it was his coping mechanism. We could learn a lot from him.

He did fine with the procedure and was only moderately cranky upon wakening. He always finds something to fixate on and get upset about and this time his milk didn't taste right. We finally got to leave and went and got him a toy (it took 3 pokes to place his IV and so he was owed one!) ad then we picked up Julia and went to Red Robin for an early dinner.

The bone marrow should be looked at this morning. The bone biopsy takes a few days to prepare and so those results will not be available today. We could find cancer in both, one and not the other or neither.

Luke talked to Nathan's main doctor on Monday and got a few questions answered. The reason they wouldn't do the MIBG scan this week, was that basically, they feel there is no point in doing it if he has relapsed.

Now, we know that long-term survival for relapsed stage IV neuroblastoma is about 0 However, we have been around the NB world long enough to know that with some not so horrible treatments, kids with a relapse can often survive for several years with good quality of life. So - in our minds there would be no reason to give up. We also know there are lots of doctors around who think that way too. Most of these are research doctors who see these kids. So - I guess I am not surprised his local doctors feel the way they do - but I am disappointed. I certainly hope they will agree to provide support services to Nathan, should he relapse and get treatments elsewhere.

So - now we wait for results.....Please keep up those prayers for clean bone and bone marrow!

p.s. check out the photo album page

Monday, March 28, 2005 12:46 AM CST

Hello - I hope you all had a happy Easter! We did. The easter bunny came and hid eggs and brought baskets. Julia was especially pleased that the Easter Bunny brought her a "my little pony". We all went to church. Julia had a new dress and Nathan had a new tie and they looked very nice (I'll post some pictures soon). Unfortunately, on Thursday, Nathan cut Julia's hair. It looked awful. The biggest problem is he cut a big chunk of bangs off right in the middle of her forehead. I managed to disguise the problem for a few hours for Easter with some hairspray. Needless to say I was really angry at both of them on Thursday!

They both enjoyed Sunday school and I enjoyed the music we sang for Easter. We came home for a while and then went to spend the rest of the afternoon and evening at a friend's house. We watched some basketball and hid eggs outside for the kids to find and then had dinner. All in all - avery happy Easter.

I find myself in a not-so-happy mood today. I am increasing frustrated and angry with all the doctors involved. A good part of the frustration is coming from within, but I am upset at the way things have transpired. First off - it is unacceptable that it took 3 days to get an MRI result. Then - a bone marrow cannot be scheduled until Tuesday. I find out it is tenetively set for 12:30. I ask for a final confirmation and am promised a call back and never get one. I am mad that the procedure is at 12:30 and I know why it is. The intensivist who works in the PICU doesn't like morning procedures. He pitched a fit the first time we were there even though he wasn't the doctor doing it. He says it is too busy a time. He complained right there in front of all of us. He obviously doesn't care that a 4 year old will have to go without food for 18 hours - he only cares what is convenient for him. I finally got the confirmation that the time is 12:30 so I ask about the food restriction and she tells me 8 hours. I had to then say - isn't it only 4 hours of clear liquids? She goes back and says yes. So Nathan can have juice and jello and broth tomorrow morning. If I hadn't asked her or known better he would have had NOTHING at all for 18 hours. I called Thrusday and left a message that couldn't Nathan have all his scans this week since he was due for them all anyway? I call back on Friday and get the message that no - they don't want to do that. OK - fine - but it doesn't make sense to me. Why not have all the scans to have the big picture. Every test we have - they seems to then need yet another one to really know what is going on. We know he has to have these other tests anyway - so why not do them? This is week 3 of this saga and I don't think anyone understand the extreme amount of stress this is put on Luke and I. I am at the breaking point and I cannot take another week of it should they decide to do scans next week instead of this week. Hopefully his bone marrow will be negative and we can just do the rest of the scans in May. If his bone marrow is positive - they will want to do these other scans right away and we will be waiting to see how bad it is, instead of already having had the MIBG scan and already knowing.

So - as you can tell I could go on and on about this. I hope I can get over some of this anger soon.

Who knows when we will get results back on the bone marrows. I won't even begin to guess and I suppose I won't even belive them if they tell us when to expect them. We will let you know when we hear something and I can continue to practice my hobby of calling the clinic and asking for answers every day and making the staff dislike me more and more every day.

Thursday, March 24, 2005 7:49 AM CST

(Luke 3/24 1:30 PM MST) I don't have any news to add. We will be dealing with the same uncertainty throughout the weekend. Bone marrows will be performed on Tuesday. I just really wanted to thank everyone for their continued support. We have received so many wonderful guestbook entries, emails, phone calls, and cards. Your support is very appreciated and important to our family. Thank you.

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

Ok - well we have results and they are good news/bad news.

The good news is that his left hip was most certainly the fluid - not cancer. The bad news is they saw a "spot" on his right pelvis. This spot could be anything - but with Nathan's history they feel the need to look into it further. They feel they cannot accurately biopsy the spot itself and so they will do a bone marrow biopsy. The doctor feels that if that spot is caused by cancer the bone marrow in the right hip would certainly be involved. If the bone marrow is normal we will assume the spot is something else.

They are trying to get the bone marrow biopsy done on Tuesday.

So - the roller coaster continues.....

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


Well - STILL no MRI results. At this point we don't even know if they are available. Nathan's doctor said he would watch for the results from home and call us with them, but it has been 3 days since the scan now so surely the report is in. I supposed we will call the office today and see if the other doctor could get the report for us.

I will update if we get some results.

Tuesday, March 22, 2005 6:07 PM CST

Can you belive the radiologist has still not entered in his report?? Yep, but I will tell you what we know.

Nathan's oncologist looked at the scans online and he is no radiologist but he didn't see any of the "lytic" changes that would indicate cancer causing the pain. He also thinks he may have seen effusion (fluid) by the joint. This can happen sometimes when a child has had a virus and for some reason it travels to the hip joint. This fluid can cause pain (called transient synovitis). He really wants to see if the radiologist sees the fluid since he (onc) is no expert at reading MRIs.

Another piece of good news is that half of Nathan's urine test came back well within the normal range. Usually the two numbers are pretty in tune with eachother so we would not expect the second half to come back elevated either. This is the test that checks for catacholamines in the urine. Catacholamines are produced by active neuroblastoma. Jut because they are normal doesn't mean there is no neuroblastoma there - but it is another good sign.

So - this means Nathan could just have this fluid in his hip. If it is that - the pain really should go away in the next day or two.

The next step is to go ahead and take some bone marrow from Nathan. Unfortunately the office is too busy to do that this week. Hopefully they will do it on Monday.

Nathan's doctor is off the rest of the week but has promised to check for the report from home and call us as soon as the report is in. There really is no excuse for it to not be in yet. That is pretty irritating.

Anyway - keep the thoughts and prayers coming - they may be working!

I will update you when I hear something.

Monday, March 21, 2005 12:58 AM CST

************************************************
Update but no update - 7:00 pm

No phone calls from the doctor today. Nathan's leg has been mostly fine today, bus as is the pattern - it was bothering him right before bedtime.

I assume we will get a call tomorrow.

We will continue with our day as planned tomorrow The kids are going to the sitters where they will have a birthday party and do crafts. There is a little boy there this week (spring break) that Nathan really likes and so they should have a fun day.

I am assuming that Nate may still ahve more tests and procedures this week.

I have a feeling that if this is relapse it is going to be somewhat a different experience in that people might not we as willing to do things as urgently for him. There might need to be more pushing from us this time.

Anyway - I will keep the journal updated as I hear anything.

Thanks for your emails and guestbook entries.

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


Well - we went in this morning for an MRI and xrays. We wanted to do it without Nathan being sedated but the radiologist was really against the idea so we let them sedate him. In the past he has been in an awful state after sedation - but today it was pretty mild.

I expect a call later this afternoon from his doctor to let us know the results. Who knows if this tets will give us any results or just lead us to finally do bone marrows - which will really give us the answer.

We had a good day on Sunday. We went to church as usual and had a normal family day. Nathan's leg still hurts - but it is mild and is not keeping him from playing.

I will update the page later - though I don't expenct any kind of definative answer from just an MRI.

Saturday, March 19, 2005 1:57 PM CST

Well - the pain is back today.



I have to admit both Luke and I really are feeling like this is relapse. The way the pain came and went and came back is very much like what NB would do.

Nathan has an MRI on Monday morning and we will go from there. Meanwhile we are trying to get through the weekend. Though Nathan is in some pain - he is still playing and having a good day - which is all we could ask for.

Friday, March 18, 2005 11:45 AM CST

Well - the last results are in and they are elevated (sed rate and crp). They indicate inflammation in his body. His doctor wants him to have an MRI and xrays. Unfortunately we cannot get those until Monday or Tuesday. His doctor is definately concerned that this is relapse . I didn't get a feeling for what else it could be. The thing is - he feels great today. If it is neuroblastoma - he will start limpin again - but who knows how soon.

I wish I knew what else could be causing the elevations but I don't. They will recheck those levels next week also. If they go down - it is not cancer.

So, basically - we are in limbo for a few days. Which is the worst place to be.

Thursday, March 17, 2005 5:52 PM CST

Well - so far the news as as good as it could be.

Nathan woke up still limping but it has gotten alot better during the day. The doctor did an exam and he didn't even see the pain until I showed him what motion I could do that caused it. Nathan admitted it was less. However - it could still be cancer and the pain could come and go and so I go to the next part - the labs.

His blood counts (hemoglobin, etc) were normal. At diagnosis he was anemic due to the bone marrow dysfuntion caused by the cancer - but that would only happen at very high levels of cancer.

We just now got a call on some more of his labs:

LDH is normal. This is elevated when there is a lot of tumor activity. So - it doesn't mean there is none - but it does indicate he doesn't have a massive relapse.

His other labs that show how his bone marrow are working came back fine - once again indicating there is not a massive amount of cancer in his bone marrow.

We are still waiting for (and at this point won't get until tomorrow) his sed rate and crp. This would be elevated if there is inflammation happening in his body. If they come back elevated we will immediately start doing tests to find a cause. It could be cancer, but it also could be an infection. If it is elevated - he will have some xrays and an MRI - but I am not sure how soon they would get him in for those.

I asked his doctor - would he expect the LDH to be elevated if it was cancer that was causing the pain and he said yes. So - while we cannot rule out cancer at this point, it doesn't seem as likely as it did yesterday.

We did collect his urine for the HVA/VMA test which is elevated if there is neuroblastoma. That test takes at least a week to come back though.

We will probably do scans in the next few weeks.

I am so thankful to have the hope that this is not a relapse. Yesterday we were so sure and at least, today we feel there is a good chance it is not relapse. We don't want to get our hopes up too high though.

If it is relapse - we have certainly dealt with the fear now and are ready to face it if it should happen.

Nathan told us he had a good day. I think it is mostly because his DAD came with him for all of this! He just came up to me while I was writing this and kissed me on the cheek.

So - we'll see what the sed rate and crp are tomorrow and go from there.

Thursday, March 17, 2005 0:45 AM CST

Well - I never meant for it to be so long until I wrote again. Unfortunately we are a wreck around here.

On Wednesday (16th)- Nathan woke up with hip pain. It only got worse during the day and is exactly like the pain he had on diagnosis and in the same hip. He denies having hurt it in any way and said it just started hurting in his sleep.

We are taking him into his oncologist Thursday and will hope to start some tests. It is hard to say how soon we may get any answers.

Please keep Nathan in your thoughts and prayers that this be anything but neuroblastoma.

Wednesday, March 9, 2005 10:48 PM CST

Yes - it is a midweek update!

Nathan is slowly recovering from being sick. He is still quite tired and still coughing ocassionally. His fatigue is the worst symptom. It is hard to see him dragging like that - it brings back too many bad memories.

He was so tired he did not finish his swim lesson and I kept him home from preschool so he could have a nap. I woke up this morning to him screaming hysterically at Julia because she left the bedroom first and apparently it was his turn to leave the bedroom first. That is the thing with Nathan - everything is highly emotional. He couldn't just be mad at hear - had had to completely melt down about it. I get so tired of every little thing being a complete meltdown with him. I keep wondering at what age do kids NOT cry about every thing. I have been having talks with them about being first - they life to fight about begin first to get into the van. Even though they each have their own carseat so they already know were they will be sitting. I just don't get it!

We have determined that Nathan and narcotics just don't mix. We had him on codeine cough medicine for 4 nights. On night #5 we felt he no longer needed it. Well - he was up half the night freaking out. It seemed pretty clear to me it was related to the narcotics and the withdrawl from them. Nathan in any kind of state effected by either narcotics, sedating medicines or steroids is just plain out of his mind. Coupled with this is the fact that Nathan begged me for the cough medicine tonight and got really upset when I said no. In NY he used to get so happy about getting his dilauded and he was very particular about it. One time a nurse put it in his line fairly far away from his body instead of pushing it in right at the enterence to his body. He was so mad that he didn't get the rush. Another time he asked us for tylenol and when we told him it wasn't the red kind (with codeine) he told us to nevermind. The nurses in NY would joke and refer to Nathan as a dope fiend - you know how it is when you joke - often there is a piece of truth in it and it seems pretty clear that he is easily affected by these medicines in all kinds of ways and we are going to try to steer clear of them when we can.

Nathan goes into the oncologist on Friday. I am hoping he is feeling better. I felt fine when he was really sick and I knew why he felt bad - but now that it is lingering it really bothers me.

So - that is what is going on around here. I will update again this weekend.

Monday, March 7, 2005 8:39 AM CST

Well - the past week was all about sick kids. In fact I DID make that appointment for Nathan but had to cancel it since he got sick.

Julia started coughing on Monday and got a fever on Wednesday. Nathan started coughing on Wednesday and had a fever Thursday, Friday and Saturday. Today they are both better but with a lingering cough.

It has been a long time since Nathan was sick and boy - he really wallows in it. I guess he deserves to be however he wants about it, but he sure makes himself even more miserable than he feels just by moaning, groaning and complaining.

We did get confirmation of our Make a Wish trip in April and are now just waiting to find out where we will stay. The special place that kids usually stay for Make a Wish is probably full and so we will see where they put us.

Luke is travelling this week (starting tomorrow). I have Choir Tuesday and Thursday nights and so I have sitters lined up. I was supposed to do choir on Friday night as well, but that would have been just too much babysitting! I actually have choir tonight too (and yesterday morning and last night!). Our big concert is Palm Sunday. After easter it will calm down again.

I am unsure if I will take the kids to swimming lessons this morning. Nathan has swimming lessons, preschool, and they come with me to choir on Mondays and go to the nursery. I don't know if it would be wise to subject him to so many things today so I need to pick and choose.

I will try to reschedule his oncology appointment for Friday.

So - nothing exciting going on here with all the sickness.... So far Luke and I haven't gotten it and hope it stays that way.

Thanks for checking in with us!

Susan

Sunday, February 27, 2005 5:27 PM CST

Wow - this week had flown by - I can't believe so much time has gone by since I updated.

Let's see - when we last left off Luke and I were going off on a date night. We had a very nice time and the kids were very excited for Brenna to come babysit them! It is so nice that they think it is fun and don't mind us going. They will be having lots of babysitting in the next few weeks for my choir practices while Luke is out of town. He has a knack of travelling during the busiest times of choir. Not that he has any control over it. Speaking of choir - I just cannot express how much I love it. It brings me such joy - and those who know me know that I am not a "joyful" person - so it is a wonderful thing!

This past week the kids started their new round of swimming lessons. Julia likes the teacher better and has told me that she is going to go underwater with the new teacher. I might try to take some pictures tomorrow. February had gone so fast that I don't think I have any pictures to put on the February page.

Hmm - I am trying to remember what else we were up to..... We had another playgroup at the place that has big inflatable jumping toys. They loved that again. Friday they had some friends over for most of the day and it was nice enough to play outside some.

Yesterday we took the kids to the movie theater for the first time. Yes - can you believe we had not ever done that? We went to the dollar theater and saw "The Polar Express". It was really fun and Julia lasted through the whole thing. I have to admit I did tear up a little as we sat there as a family. It was just so precious to me to be having this normal family exprerience and watch the kids enjoying this "first".

I have been procrastinating making Nathan a clinic appointment. I am just enjoying the medical-free life so much. I WILL call this week and make one for this week or next. They will probably take a urine sample and do the test on the urine that detects Neuroblastoma. They may take some blood, but mostly just a check up. I actually need to find out how tall Nathan is so I can figure out which rides he can go on at Disney World.

I have heard some sad news lately in teh childhood cancer world. I heard of a boy 4 years NED who just relapsed with Neuroblastoma and a mom on a childhood cancer online board lost her son suddenly, after 6 years in remission - do to a very late complication of his surgery. It is a reminder that anything can happen. I just wasn't aware of these thing happening in this world and now that I am - I see they happen far too often. It is such a helpless feeling.

I recently had a conversation with the teachers of the deaf in Nathan's school district. They met with him and said he is doing great. I have since become concerned as we try to teach him phonics in an everyday way. We try to tell him what letter or sound a word starts with and it is so very difficult for him to hear the subtle differences. Even when he is wearing his hearing aides we will repeat and finalyl tell him to look at us and then - whe he reads our lips he finally gets it. He doesn't currently have an IEP, but I think he needs one so he gets one on one help next year on his phonics and reading. I will be contacting the teachers of the deaf again to discuss it with them.

Well - that is about all I can think of that has been running through my head lately. Since we are just doing normal things lately - there doesn't seem to be too much to tell you all. I always find it interesting to check in on our caringbridge friends - even when it is hearing about their everyday stuff so I hope the same holds true for all of you.

Friday, February 18, 2005 8:09 AM CST

Hello,

Well - this week has flown by.

Monday was Valentine's Day and Julia and I went to Nathan's party at preschool. It mostly consisted of eating, but we all had a good time. The kids were having "circle time" when we arrived and Julia sat right down in the cirlce and joined in. She can't wait until she gets to go. She is signed up for 2 days a week next year and will likely have the same teacher as Nathan.

I had a choir rehearsal late Monday afternoon/evening and they had childcare so Nate and Jules came with me and ate their dinner and played with their friends Pete and Katie.

Oh yeah - also on Monday Nathan had his ear rechecked and all was fine. They also had a swimming lesson and they both passed to the next level. In fact, in this last lesson they both made great strides. Nathan starting voluntarily dunking his head under water and both he and Julia floated on their backs unassisted. They start the next level on Monday.

The rest of the week was not so busy. In fact, yesterday we didn't have anything going on and I tried to get the out of the house, but they wanted to laze around in their pajamas. They play so much together now that sometimes they prefer to stay home. Not that I am complaining. They are the perfect age to play pretend all day long. Yesterday afternoon they stayed outside for over an hour playing some invovled game.

Today we are going to a friend's house and then going to the library for a preschool-sponsored event. I am actually not sure what we will be doing, but it sounded like a good activity to attend.

Luke and I got a babysitter for Saturday night and will be going out. This is actually the first time we have done this. This is not to say we haven't been out to dinner alone in 5 years, but it has always been when we had family visiting to watch the kids. Luke finally went to the doctor and is on multiple medications and is hoping to feel better soon. Of course, he went on a business trip and has been working ever since.

Lately, Nathan has been delighting in doing physical things. Last night he was doing flips off the side of a chair. I can't help myself but to delight in it rather than tell him to stop. I just love watching him be physical. The other day, when leaving preschool he and Julia ran ahead and he actually told me to hurry up. This has never happened before. It is always me telling him to hurry up. He has never walked ahead of me before. It was wonderful. That is definately one gift that Nathan's cancer has given..the ability to relish in the small things that happen every day.

Have a great weekend!

Monday, February 14, 2005 7:38 AM CST

Happy Valentines Day!

We are all slowly recovering from the sickies. Luke is still the sickest though he is up and around. In fact, he is off on a business trip today after having worked all day yesterday on the presentation he has to give.

Nathan will go the the doctor today to get his ear rechecked to make sure the infection is gone. Before that, I think they have a swimming lesson to make up for a snow day. We will go over and find out for sure and sign up for the next round.

Nathan has a Valentine's day party at preschool and Julia and I join him for it later this afternoon. My friend Tonya and I traded favors....I took the bunches of lefterover valentine cookies she had from her son's preschool party and I will bring them to Nathan's - she says I did her a favor by taking them out of her house! Nathan and Julia have both picked out valentines to give. I am not sure who Julia will give them to, but I knew I had better get her some since I had to get Nathan some.

Everything looks fine for our friend, Joshua - they are doing an additional test to make sure - but his family is feeling much more reassured now.

My choir busy season is starting up again. We have a concert on Palm Sunday. We are starting extra rehearsals on Monday's starting today. This time, there is child care for it so that will be much easier. We will be singing John Rutter's "Mass of the Children". It is really beautiful and I am enjoying learning it. We will also be getting ready for Easter services and two other extra preformances in te Lenten season.

I am sitting between Nathan and Julia as I write this. They get up in the morning and sit on the couch and wathc a little TV. When I come down they are often sitting right next to each other - sharing a blanket. It is so sweet. As I was writing this - Nathan snuggled up to me and said' "Mommy - I love you very much". He is just so sweet and loving. Julia is too - but just not quite as much! I am so lucky to have them.

Wednesday, February 9, 2005 8:14 PM CST

Well - we have a house of sickies. The kids and I just have bad colds. Poor Luke has been in bed for two days with the flu. The kids and I have been going about our regular activities - just while sniffling.

Nate and Jules had swimming lessons today. They both are progressing nicely and we plan to sign them up for the next session.

Preschool is continuing to go well for Nathan. He just has so much fun every day. On Monday, however, he was sad because it was his turn to bring snack and one of the girls didn't like the applesauce. He really took pride in bringing snack and was disappointed that he couldn't please everyone. One of the other moms told me her daughter told her she had a crush on someone and could her mom guess who? Her mom said no and she said she would give her a hint - he had things in his ears! She said that Nathan is so fun to play with and so nice. Isn't that sweet!

Nathan told me that his legs hurt him last night because he had been walking too much. Well - there is nothing a Neuroblastoma parent wants to hear less than that! I hope he had just done something active yesterday.

I have finally updated our family web page. There is a link at the bottom of the page.

One of our NB friends, Joshua, could use some prayers as he has had a scan that is a bit questionable. He was diagnosed at the same time and Nathan and they did antibodies together. So please send some extra prayers his way that all is fine.

Thanks for checking in with us!

Sunday, February 6, 2005 11:33 AM CST

Hello everyone -

We are in the middle of a nice relaxing weekend. In fact, today is perfect football weather since it is cold and snowy. We lit a fire and are settling in. I should also mention it is perfect basketball weather too - since the Illini are on this afternoon as well.

We had a pretty good week this past week. Tuesday, the kids didn't go to daycare as usual because she and her family were sick. Wednesday there were swimming lessons and I am pleased to announce that Nathan got up the nerve to jump to his teacher without holding his hands. He was very proud of himself.

Thursday we went to Chuck E Cheese and they always have a lot of fun there. At the end of the morning, Nathan complained about his ear hurting and then on teh way to preschhol he was in tears about it and so we went home and he took a nap. Luke took him to the doctor in the late afternoon and she said he does have an ear infection. He is on antibiotics and has not complained of any pain since Thursday afternoon and so it has been a non-issue.

The kids went to daycare on Friday and I got to file the taxes and do some errands.

We were in contact with the Make a Wish people and it looks like we will be going to Disney World in April. We haven't told the kids yet, but I am sure they will be so excited. Nathan just loves amusement parks and I think this is a great wish for him.

I got to go out last night with 11 other women for a "girl's night out". We went to a restaurant and had a great time.

This week has nothing of note going on. Well - actually I forgot - Julia has her 3 year old checkup. Nathan will go to daycare and Julia and I will spend the morning together. I am looking forward to that. I so rarely spend any time alone with her and I have spent so much time alone with Nathan. She has gotten so grown-up lately. I can't belive my baby is 3 now!

So - we have all been living very normal happy lives lately and I am so thankful for that!

Monday, January 31, 2005 8:40 PM CST

Hello

There is really nothing to update but I thought I would anyway. I have heard nothing more from NY and so am just assuming all is well.

We had a relaxing weekend. Sunday we woke up to quite a bit of snow. Luke and the kids had fun playing outside in it.



Today it was still snowy enough that swimming lesson and preschool were cancelled. I took the opportunity to just stay home all day. I enjoyed it, though Nathan kept asking to go do something fun. They did go outside and play in the snow a little.

As far as medical things...I think the next thing will be a routine clinic visit sometime in February.

So - that's it from here. Take care!

Wednesday, January 26, 2005 12:35 AM CST

Hello - I really meant to update before now... We have been so busy - in a good way. This past week was spent getting ready for Julia's birthday party. Sprinkled in between was some house projects and a half day spent in bed sick for me and another for Luke and so by Saturday we still ahd a lot of work to do. Fortunately my friends Tonya and Linda came to the house Friday morning and cleaned with me!

Julia's party went very well and it seemed everyone had a good time.

This week the kids have had swimming lessons twice. Julia is afraid of jumping in and so has been a little reluctant about the lessons. She seems to have fun while she is in them. Nathan loves the the lessons and is doing a good job trying to put his face in the water.

Our practically new van is in the shop with a problem. That is frustrating. Especially since the backup vehicle had a sevice engine light on it. I think we have fixed it and hopefully the van won't take too long. It is not very fun cramming us all into a 2 door car.

I went to the dentist yesterday. Lots of my old fillings need to be replaced. I am not looking forward to that. Nathan and Julia go to their dentist tomorrow morning. It will be Julia's first visit. I am going to have Nathan go first and let her watch. I dropped off a copy of the Children's Oncology Groups long-term effects guidelines on teeth with their dentist yesterday. He doesn't belive that his treatments have caused all his cavaties. I wanted to make sure he know what kinds of follow-up care and after effects are commen with cancer kids. If he doesn't respond well to it then I guess I will have to find another dentist. We would have to go to Denver to find a dentist with some experience with chemo kids.

This weekend we have no plans - which is the first for a while. It will be nice to relax a little. We still need to put our Christmas boxes back into the crawl space so that is probably on the agenda.

I emailed Nathan's doctor in New York to see if there were additional tests being performed on Nathan's bone marrow. He is looking into it. Usually they do a very sensitive test on the bone marrow to detect microscopic disease. I will let you know if I hear anything. It has now been three weeks since we started the tests and it is frsutrating that we still don't have all the results. I will probably push off the next round of scans until mid to late April. I think we should get 3 months without thinking about the tests. Actually, we will probably do the urine test again in a few weeks since we have been doing that between scans. That one is not as nerve-wracking as the others. I wish we could just do urine tests every 3 months and fulls scans every 6.

Well - I think that is all for the update this time. I will try to get a new picture of Nathan up on the page and some new photos in the photo album too.

Wednesday, January 19, 2005 8:37 AM CST

*** Update: Pathology reports on the bone marrows from our home hospital look good. We will have to wait awhile for the more detailed tests that are ran in New York, but so far the good news keeps coming. ***

Hello,

Sorry for not updating sooner. We have been pretty busy.

We had a good weekend in the mountains. Julia has been fighting a stomach bug and it reared up again and Nathan got it too. They didn't feel bad until Saturday night/Sunday morning and so we had a good time until then. They got to go sledding down the hill behind the house. It was fun but lots of hard work to haul ourselves , the sled and the kids back up the hill. The snow was about 3 feet deep - Nathan figured out that he could sort of crawl on it but stepping on it just burried him.

We came back Sunday afternoon and are busy with some home improvement projects and getting ready for Julia's 3rd birthday party this weekend. She has been talking about her party for many months and wanting all her friends to come. Well, many of her friends moved away in the last few months, but most of her remaining friends and some new ones are able to come and so she should be very happy. Between the kids and their parents this house is going to be packed. We will be doing some art projects at her party.

We have had no results from the bone marrow biopsies yet. I If don't hear anything today I will call, but the final results will still be another week or so I think.

We are off to swim lessons today and have many other appointments and plans in the next few days so I will just put an update on the top of this page if I hear anything about the bone marrows.

Thursday, January 13, 2005 7:56 PM CST

Hello,

Well, we got bone marrows done this morning. We warned Nathan last night that he could not eat or drink when he got up. He had a good cry about it but then this morning he was as happy as a clam and didn't ask about it.

He did great getting his IV and the procedure went well. Afterwards we went to a restaurant for lunch and he was happy and feeling great. No complaints of pain, whatsoever.

Luke came with us this time and Nathan as so happy to have him there (as was I).

While we were there (at the hospital PICU) one of Nathan's doctors told us that there was a newly diagnosed neuroblastoma family in the PICU and asked if we would talk to them. We were more than happy to and talked to the parents for a few minutes. Their little boy is 17 months old and already has some feeding and growth issues. In fact, this little boy has had numerous tests at MAYO clinic and through all that no one ever saw this huge tumor in his chest and abdomen. Anyway, we were glad to be able to be proof that kids do recover from this beast. We also offered up what advice and knowledge we had. It was kind of chilling to see the parents' shell-shocked faces and remember what that was like.

Tonight I went to Nathan's future elementary school for an information night on the kindergarten program there. I have to admit that I got teary eyed as I walked around the kindergarten rooms. When he was diagnosed one of my greatest wishes was that he live to be able to go to kindergarten. We still have many months to go, but the reality of him being able to attend gets more possible every day that passes.

Tomorrow we are headed up to Grand Lake (in the Rocky Mountains) to spend the weekend with my brother at his house there. We are really looking forward to it! Hopefully we will all be healthy enought to enjoy it. Julia has been fighting off a bug. She has been complaining about having a stomach ache for a week or so. Then, this weekend she had problems with her "girly parts" and has been a little lethargic. I took her to the doctor on Monday and they checked her for a urinary tract infection, which she does not have. The Nurse did say her gut seemed overactive and she was probably fighting off a virus. Well, last night she threw up aroound 2:30am. I had served a dinner that was not very stomach-friendly and I think that did her in. We finally got her cleaned and settle back in and I tried to go to sleep and was in great pain because I spent too much time scraping wallpaper off a wall and my neck and shoulders were killing me. I finally fell asleep just before 4:00, when Nathan woke up and had wet his bed and was trying to clean it up. Luke took care of that and we finally got a little more sleep. I woke up with a cold and unable to move my right arm and neck. Fortunately the arm and neck are much better. So, I am praying no one else gets this stomach bug and we all get some sleep tonight so we feel well this weekend.

When I took Julia to the doctor, while we were waiting in the exam room she said, mumbling, which she does when she is a little hesitant to say something, "in that book the little girl gets cancer" She is talking about a book we have at home. So I asked her if she was worried about that and she said yes. I just about cried to think she is worried she has cancer because she is at the doctors. I suppose it really is a healthy response, but struck me very sad.

I think we will have preliminary bone marrow results early next week, and final results in aabout a week to 10 days. I will let you know when we hear something.

I hope you all have a good weekend!

Monday, January 10, 2005 2:30 PM CST