Sunday, February 29, 2004

Sunday, February 29, 2004 5:34 AM CST

Good Morning.

Yesterday Nathan and I had a very good day. We went on an outing with Katie (9 years old), Justin (14) and their Dads Jim and Dave. Katie and Justin are undergoing the same treatment as Nathan. Dave came into the city and picked us up and drove us to Long Island. We went to Jones Beach which is an amazing serene beach on the Atlantic Ocean. We walked out onto the beach and looked and the shells and surf. After that we went to Fire Island were there is a very picturesque lighthouse. There is a long boardwalk style trail leading to it through brush. Many deer wander near the trail. Katie got a real kick out of feeding and petting the deer. Nathan told me his favorite part of the day was looking at the lighthouse.

After the lighthouse we went back into Long Island and went to a place called Strikes for lunch. It has go-kart racing and bowling. After a good lunch we all went and rode go-karts. There were 2 seater karts and so I drove and Nathan rode. He got a real kick out of that. After the go-kart the kids had dessert and then Nathan and I went to look at the bowling. He thought he would like to try it sometime.

We went back into the city and back to the apartment. We got home around 3:30. Nathan was tired and had a little nap. We both benefitted greatly from the outing. Just being on the empty beach and looking out onto the ocean was great medicine for me. It was great having the company of other adults for a day as well.

Nathan was up at 5:30 this morning. WAY to early. We will be cleaning and packing this morning and my friend Louise (from England) will be coming over. This afternoon my cousin Laura and family will be coming over to help us move over to the Ronald McDonald House and then we will all go to dinner and a pizza place geared towards kids.

Thanks everyone for all your encouraging messages and emails. Tomorrow it will be 11 months since diagnosis. I think fairly soon we will get a little break from treatment and will have some time to recharge. I know a family that has been in continuous treatment living away from home for almost 2 years with no more than a two week break. That mom, Gina, is MY inspiration!

I will put a picture of Nathan and I on the beach in the photo album.

 

Wednesday, February 25, 2004

Wednesday, February 25, 2004 3:18 PM CST

Hi there - I guess I owe you all an update.

Tuesday was better than Monday. His pain was still bad but he had no pressure problems and we got home by noon. During the afternoon he had pain off and on in his extremities. I massaged him for a while - it seems to help. He also had a bath in the afternoon to help his bottom. The doctors are supposed to discuss his bowel pain in their weekly meeting today. We'll see if they come up with anything. I hate to see him in so much pain because of it.

Today was a more normal day for him. He didn't have nearly as much pain or at least handled it well. I was thinking about how horrifying it would be for someone (non-ancer parent or professional) to wander back in the corridor where all these kids are getting antibodies. The screams and moans are really awful.

He will have a cat scan on Tuesday and an MIBG scan on Wednesday (I think those are the right days anyway). I don't have a clue when we will get results but I am hoping we will have them before we leave on the next Monday. He will be having bone marrow biopsies on that day.

We will be moving on Sunday or Monday. My aunt and uncle will be in town and in need of their apartment. I am still trying to decide where to stay. There are several factors I am weighing and will try to decide by tomorrow. Most likely we will stay in the Ronald McDonald house but only if I get my hands on one of those very little fridges (hold about a six-pack) so I can keep some milk in the room with us.

I am pleased that it is Wednesday and this week is half over. I cannot wait until this weekend to get a little break. I will be meeting an online friend from England on Sunday as she and her husband are taking a trip to the city for the weekend. Her 3 year old was undergoing chemo at the same time as Nathan with a different cancer. He is doing well now and in remission.

All is well at home and Julia is doing fine with daycare.

So - one last personal note. There are many of you out there reading who are friends and you are keeping up with what is going on with us - however - we don't know what is up with you - so if it has been a while please email us. I know in my case there are several of you out there I have written emails to in my head as I lie in bed but can't find the energy to actually email.

Monday, February 23, 2004

Monday, February 23, 2004 3:32 PM CST

Hello - sorry I have not updated. Nathan and I had a pretty good weekend. On Saturday we went out to the grocery store to stock up and then in the afternoon my cousin Laura came over and we went for some food and hung out. Nathan was having alot of bowel pain at the coffee shop but did ok and we had a good time.

Sunday we lazed around for a while and then got brunch at a nearby restaurant. Later in the afternoon we hopped on a bus and rode down to KMart. I bought him a toy and me a puzzle there. The trip was really about the bus ride - which Nathan thoroughly enjoyed. We picked up some food to bring back and Nathan was quite happy because it included his new favorite - mashed potatoes.

Today started early and we were off to the day hospital at 7:30. He had his finger pricked which is always a big deal and we got his bed but then we waited and waited to get started. We finally started around 11:30. Right about the time we were going to be getting to leave they checked his blood pressure and it was low and so they gave him alot of fluids. After that it was still low and so they gave him some more. His pressure finally went back up but he started crying in pain and his oxygen levels went down. We still don't know why but it finally passed and we arrived back at the apartment around 4:00.

He had quite a bit of pain today - seemed like one of his worst days for that. We saw the doctor today and he is scheduling a full set of scans for next week. Nathan is currently in bed. He was crying in pain a few minutes ago and I went in and his bottom is hurting him. He resisted all attempts to make him feel better and told me he didn't want to feel better and stop crying and so I left him to it and he is quiet now. The last thing I can do after this long day is listen to him scream in my face some more. Hopefully he will rest a little before dinner.

Hopefully I too will get to rest a little!

 

Friday, February 20, 2004

Friday, February 20, 2004 6:00 PM CST

Hello from NYC!

We arrived in around 6:00 tonight and are settling in.

The last few days have been busy. Thursday we ran around doing errands and then stopped in at playgroup. Last night I put Julia in the car and we were going to go to Wal-mart. Unfortunately we were involved in an car accident. I was turning left onto a major road at the top of a hill and the light turned yellow as I made my turn. Right after I turned onto the road I saw something out of passenger window and it was a car racing by - they swerved and grazed my car (I barely felt it) but the driver lost control and hit a light pole and spun into the opposing lanes. Fortunately no one else was involved and the driver was shaken up but OK. I didn't talk to her because I was staying at my car with Julia. A few minutes later we almost got creamed by a car coming up the hill who didn't see people flagging them away. It managed to stop a foot or so from my bumper. Julia was in the car at that point and it scared me to death.

Best I can figure is that the other car anticipated the light turning green as she approached and didn't even slow down. There were several witnesses who saw that her light was red. Unfortunately they didn't actually write down that I had the right of way even though they said she had a red light. That technicality caused the officer not to issue any tickets but the insurance company will hopefully talk to the witnesses. Anyway - our car has a small dent and a broken turn light and that is all. We were lucky we weren't hurt!

After that it was very difficult to go home and pack but with Luke's help we got it done. We woke up to snowy weather this morning and went to the airport. The streets were a little slick but we got to the airport in plenty of time. The flight went fine and Nathan was good. As usual he had lots of bowel pain. His abdomen was as hard as a rock from the gas in there. A major accomplishment is that we went to the bathroom and he went on the toilet. This is a first for him and hopefull he will be potty trained soon.

So we have the weekend in New York. I am not sure what we are doing yet. I am sure a subway or bus ride will be in store.

Wednesday, February 18, 2004

Wednesday, February 18, 2004 2:51 PM CST

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Just a quick update. We haven't heard anything from the corporate angels and so I had to buy tickets. Due to ticket prices, Nathan and I are leaving tomorrow (Friday) morning for New York.

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Susan here...

Nathan went to the Dr on Monday and his counts were doing fine. He is still having "poop issues" and has been having a lot of pain the last few days. He is done with the accutane but has extremely chapped lips. He started his shot this morning. We have not heard anything from New York so we assume that means his HAMA is negative and he is a go for Monday in New York. No word from Corporate Angels so it looks like we will be flying commercially. We will probably leave Friday or Saturday. I will look at flights later today.

We have been mostly hanging around home and running errands the last few days. The weather has been warm yesterday and today so we have gotten in a little playing outside which has been a nice change. Nathan tires out in about 20 minutes though. All the doctors keep saying that his fatigue is to be expected - but just comparing how he is now to when he was having chemo is discouraging because he was so active during all of that and now he is at his worst. What I wouldn't give to see him run around.

One of the questions I will be asking this time in New York is when will he get more scans done. He has been having the bone marrow aspirations but I would think they would want to do the other scans sometime soon. His last scans were in early December.

So one or two days left at home and off we go again. I am just focusing on getting rounds 3 and 4 finished and then we will get an 8 week break in which to try to live a little bit normally for a while.

Sunday, February 15, 2004

Sunday, February 15, 2004 4:17 PM CST

Susan here..

We've had a pretty good weekend so far. Yesterday we went to Home Depot and then to Taco Bell (at Nathan's request). We had a good lunch and then the kids napped. We played alot of board games as both kids seem to enjoy them. Last night we all went to Chili's for dinner and both kids were amazingly well-behaved and we all had a really nice Valentine's Dinner.

Last night was bad for me - Nathan was up at midnight with a dirty diaper and I did not fall back asleep until well after 3:00 am. Ugh.

Today we lazed around this morning. Nathan and I made some cupcakes and then I went out shopping by myself (yay!). Tonight we will be having dinner with some friends - we are really looking forward to that.

Tomorrow Nathan goes back to the clinic for bloodwork. Luke has the day off too.

Friday, February 13, 2004

Friday, February 13, 2004 11:30 AM CST

Susan here...

Well - two uneventful days. Yesterday I wanted to go to playgroup but Nathan told me he was too tired to go and so we stayed home. I drew his blood for the HAMA test. After nap time we went to FedEx to send the blood and then did a little shopping. I found a neat toy for Nathan. It is a console that fits on a computer keyboard and it emulates a construction truck cab. It has a steering wheel, levers for moving the buckets and a horn. There is software that goes along with it and Nathan is able to play on his own. He gets to drive the trucks and dig and do other projects with them. He really likes it. I will put a picture on the photo album page.

Today we played a board game sent to us (Cranium Caribou) and both kids thought it was a lot of fun. We have been just lazing around I suppose. We are looking forward to the three day weekend and being all together. I will probably get out on my own some too.

Oh yeah - a note about the HAMA blood draw - after taling to my friend I realized it isn't clear that I draw the blood right out of his Broviak - no pokes at all - so it was pretty simple.

As far as the eating goes - I think the medicine is helping. He has been eating a little more and he also finally gets that he has to finish something nutritious before we will give him something junky. HE is still doing great with the pills and enjoys drinking Coke.

Wednesday, February 11, 2004

Wednesday, February 11, 2004 8:02 AM CST

Good morning - Susan here...

**** a little addition since this morning -

click here for a little video of Nathan and Julia.

********

Well - I will try to recap the past 2 days since I have been remiss in writing.

Monday morning the kids and I went grocery shopping and then in the afternoon I took Nathan to his local oncologist. He weighed in at his lowest weight ever 30.2 lbs. He was 36 pounds at one point. He was happy to see his doctors and nurses there and was amusing everyone with all his tales of New York City.

Heathwise he is doing OK. His blood counts were fine. Not fine for a non-cancer person but fine for him! They gave him some Procrit to stimulate his hemoglobin so that he won't be quite so anemic.

We decided to put him on Megace. It is a steroid that stimulates the appetite. He is taking that in pill form at his request. We had a little difficulty getting the prescription in a large enough dose so that he would have to take 3 a day rather than 6. But after some dealings with store management it is taken care of.

He continues to do well on his Accutane. The only complaint he is having is dry eyes. I bought some eye drops for him but he didn't like the sensation of them.

His skin is not red and peeling (at least not yet).

I will draw his blood tomorrow and send it to NY for HAMA testing. If you recall, HAMA shows whether he has developed his own antibody to the antibody therapy. If he develops HAMA then we will have to wait for it to go away before we can do another round. However if he develops HAMA after he has had 4 rounds then he will be done with the treatment. He is about to start round 3. After round three if still negative he will be home for three weeks and go back for round 4. After round 4 if he is still negative he will begin going back every 8 weeks until negative or until 2 years have elapsed (measured from round 1).

Back to non-medical things - yesterday I took Nathan and Julia to Julia's day care provider. I did some projects around the house that were sorely needed and Luke and I went out to lunch together. They both had a good time there and it was nice for me to have some time to get things done.

Today it is snowing and so we will just hang around the house.

Nathan will go back to the Dr. on Monday for some blood tests. We should know next Tuesday or Wednesday if he has HAMA. Considering his pain levels last time it is unlikely he has developed it. Generally they stop having pain when they deveop HAMA.

I have a call in to Corporate Angel Network to try to find a flight. I am crossing my fingers that we can get one this time as flights are more booked up this time and there aren't any frequent flier seats available on the days we want to travel.

Monday, February 9, 2004

Monday, February 9, 2004 11:53 AM CST

Luke here...I think this entry is going to be just how we like them. That would be boring. There isn't a whole lot to report. It is wonderful to all be together. We have had many consecutive weeks of me being on business travel before (home on weekends though). The separation with Nathan and Susan in New York and Julia and I here is different though. Emotions are pretty charged for all of us considering not only the being apart but also the reason and reality of Nathan's treatment. We are trying hard to really enjoy this time before we wind up and do it all again. To that end we had a pretty good weekend. We didn't do a whole lot. We did normal weekend stuff. We lazed, we ran some errands, and we hung out.

Nathan continues to do extremely well taking his accutane pills. He had never really taken pills before and these are fairly large. He never complains and asks for them after his breakfast and dinner.

Overall Nathan is doing well. Sometimes it is hard to reconcile where we know he is overall health-wise and his physical reality. What I mean is that being in a state where the doctors can't find any cancer he is uber-healthy compared to diagnosis and even right up to his last surgery. Even so he is really struggling to get back to normal physically. This has really had its toll on his little body. We figure in a four to five month period starting in September he had two significant surgeries, a stem cell transplant, and two rounds of antibody therapy in New York. He is still so skinny and weak. We are working on it though. Eating is a constant fight. He is constantly hungry but never eats much of anything. He will eat a little bit of a meal and then say he is full only to ask for "something else" a few minutes later. It has been not only annoying to deal with his insistence on having something else, but he really needs to eat well and a lot to help get his weight and overall health back. He has an appoitment today with his oncologist here in the Springs where the primary topic will be appetite and eating habits. Hopefully we can get a strategy together.

I guess that is a long enough post considering we don't have much going on.

Thursday, February 5, 2004

Thursday, February 5, 2004 7:27 PM CST

Susan here...

Yesterday Nathan and I were wiped out but quite busy. I took Julia to the DR in the morning. She is doing great. She is tall just like her big brother (95th percentile).

Nathan and I baked her cake and I went out while they were napping and got her some balloons. We had friends over for dinner and cake - just one family as we were trying to keep it low-key for Nathan. The kids all had fun playing and eating.

Today the kids and I went to playgroup at church. It had been months since we have been able to go and it was really nice to see friends and do something normal.

We got an email from Nathan's doctor in New York saying his bone marrow biopsy was still cancer free. That is always good news!

Nathan continues to take his pills without trouble and complaint. He is awesome! He insists on taking them with Coke - so that's what he gets!

He goes in to see his local doctor on Monday. He may also have a hearing test while we are at home.

No plans for tomorrow as of yet. That suits me just fine!

See the photo page for some new pictures.

 

Tuesday, February 3, 2004

 

Tuesday, February 3, 2004 7:05 PM CST

We are home!

The day got off to a rough start because my alarm did not go off and I woke up 20 minutes before the car was coming to pick us up. Somehow we made it down in time and were on our way. We landed in Colorado around 10:15 am and Luke and Julia met us and we went home. We are all so happy to be together again!

After several tries Nathan managed to swallow his accutane pill. We were very impressed because it was very hard for him and instead of giving up when he couldn't do it on the first try (which is usually how he is) he tried and tried until it went down. What a relief!

Tomorrow we will celebrate Julia's birthday. Nathan will help me make her cake after I get back from taking Julia for her 2 year Dr appointment...just what I want to do my first day home!

Monday, February 2, 2004

Monday, February 2, 2004 8:00 PM CST

Sunday Nathan and I took it pretty easy after our busy Saturday. He did request a taco and he really likes Taco Bell. The nearest one required a bus ride to the west side so off we went. I think it took him 45 minutes to eat one taco. He thoroughly enjoyed it though. Later he wanted to go out again so we went window shopping.

Today was a long day. I got Nathan up at 6:00 to eat and then I got a call that they could get him in much earlier but he already had eaten. They still thought we could go in earlier and so we went at 10:30. He got the bone marrow biopsies at around 2:15. He was pretty good most of the time but by the end he was just crying about having to wait for so long and being so hungry. Afterwards he was very cranky from the anesthesia but we went to McDonalds and he spent an hour eating a cheeseburger and fries. We got back to the apartment and ate some pumpkin pie. We went to John and Judy's for dinner. He went straight to bed and I am trying to get ready to leave but am exhausted.

We are leaving at 6:00 for the airport and will be in Denver around 10:15. We can't wait.

Nathan was supposed to start accutane today but I got it this afternoon and he was going to take it before bed but when we got back from dinner he was WAY to tired and I didn't want his first attempt to go badly so we will go for it in the morning.

Next update should be from home!