Update from Home

Nick continues to enjoy his time at home.

He has just completed his 5th cycle of high dose Accutane. Some of the common side effects have hit him which are dry skin, bloody nose sometimes and joint pain. We are ready to put this drug in our past just like the rest of them!

He played and played at the Little League opening day festivities and even played a little bit of his first game. He put the ball in play and reached first base safely. Some people would call it a hit but don't worry, I'll report it here when he really gets a hit.

Here he is getting ready to throw out the first pitch!

We are all looking forward to spring break which is next week and then we are off to NY for testing on April 11th-13th.

Connor Coen

I am sad to report that Connor Coen has lost his battle with this beast called Neuroblastoma. Our thoughts and prayers are with his entire family.

Turn The Page!

By Friday night Nick and I both started turning the page and by the time we got to Denver it was turned. No more wheel chairs, no more pain meds, and no more misery. We arrived home Saturday afternoon and settled right back into normal life. Nick went to school today and swam in the pool. It was a great day.

He has started his 5th cycle of Accutane which lasts for two weeks. One more after this.

Thanks to my mom and dad for making the trip to NY and helping out all week.

Drinking a milkshake from Jackson Hole in the 'mummy suit'

Greeting Mom at the airport

Happy to be HOME!!

Doing Way Better

Nick came around about 10pm last night and ate a little and slept well. He is in good spirits this morning and only a little leg pain. He took his shot without incident and is very happy this is the last day of 3f8 until May.

Our plans are to take the 10:00am through Denver tomorrow morning. Hope that works.

Two To Go

It is early Thursday morning and both Nick and I are up and at em. He has really slept a lot since starting the treatment on Monday. Wednesday was mostly uneventful as far as 3f8 goes. That is, if you want to call pain, hives, and being a noodle all day uneventful. Usually, the treatment becomes a little more routine as the week wears on so we are hoping today and tomorrow are a little better. In any event, we are counting down the days.

Since the PDH closes at 6:00pm we have to rouse Nick and try to load him up in the wheel chair by then so we can go back to the hotel. This is always a struggle. Yesterday, after trying for a half hour to get him going I wiggled his shoulder a little bit and he barked out...."Since you touched me you are going to wait a little longer"....It was good to see the real Nick was there somewhere. He won't wear his shoes, gloves, or ski jacket for the trip back to the hotel so I wrap him in hospital blankets .... head included....and I look like I am pushing a mummy through the streets of New York.

It is bright and sunny here today but the temperature right now is 19.

Tough Tuesday...as usual

Nick has been a noodle since Monday morning. Right now he is trying to finish the daily shot of GM-CSF which he absolutely hates. The treatment is hard on him and there is no way to put flowers around it.

To make it even more interesting, it is snowing right now and the low is about 12 and the high is about 30 and that weather does not fit our clothes.

The treatments get a little easier as the week wears on. Looking forward to Friday.

Back at you tomorrow.

Back in New York

Nick and I arrived safe and sound in New York last night. Today has been a typical Monday of 3f8 treatment so far. Very time consuming and painful for Nick. Just like every other Monday of 3f8 has been. He is currently sleeping off the morphine and I am watching him for signs of hives so that they can be treated right away if they happen. Hives are a common issue with 3f8 and we never know when they will pop up.

The doctors are very impressed with his progress and there are no major concerns at this time. It is very important to continue the 3f8 for as long as possible to keep the nasty cancer away.

I must tell you that it is very difficult being here this time. Eight weeks at home was great for both Nick and me and this place is a depressing mess to return to. We will both be happy to see this week pass so we can get out of here.