NED!! NED!! NED!!

All of Nick's tests are back, including the extremly important Bone Marrow test and all results are NED! "No Evidence of Disease" Our weekend fun just got turned up a notch!! Even though we expected this news it is great to know it is official.

Nick is playing and eating and doing real well. The process of regaining his strength and size and regrowing his hair has begun!

His next steps are radiation and the 3f8 antibody. Both are designed to kill individual NB Cells that are thought to be present but are undetected by the tests.

Radiation Starts Monday - Home Till Then

We got the go-ahead to fly home about 1:00pm NY time yesterday after Nick completed his radiation mock-up. This is where they put little targets on him so the radiology folks can hit the right places. During his surgery, they left behind little markers inside him that pinpoint exactly where the tumor was located so that they know where to zap. We scrambled made a 4pm flight and got home last night.

Nick is doing great and looking forward to these couple of days. Our main goal is to get some meat back on his bones and we are usually pretty good at that.

New Day, New Info!

First the really great news....all Nicks tests show NED (No Evidence of Disease) pending the results of the bone marrow from today. It is expected to be clean also just like it was in July.

Now the other great news....we found this steakhouse called Ruths Chris right here in Manhattan and both Nick and I ate like animals last night....he needed to eat like that, I didn't, but I will hit the treadmill extra hard to make up for it. Like the dozens of others I have been to, this Ruths Chris was excellent also.

Today, we arrived at the PDH at 7:15 for the pre-op, waited around until 9 and then found out that Nick needed platelets again before he could have his procedure. The procedure was all finished about 11 but Nick did not wake up completely until about 1:00. I was able to work on the computer while he was out of it. He is totally fine now and walked to the bank with me which is 4 blocks each way....an 8 block walk is huge for him.

Tomorrow, we have a mock up with the radiology department. This is a change since he is not ready to start the antibody until the week of October 9th now. I think they may start radiation now instead of waiting until after the first 3f8 treatment. So much for coming home!! The positive of this is that when we do get to home, it will be for 2 or 3 weeks instead of just a few days. Once again, we won't know until we know but we will know more tomorrow.

Monday Monday - But Successful

First lets talk about Sunday. Nick slept late but woke up on fire ready to hit the city. We went to breakfast/brunch at Hudsons and then booked Mr. O'Connor for a pedicab tour of Central Park with a planned stop to hit wiffle balls. Unfortunately, it rained from 11-2 so we hit wiffle balls in the doorway/lobby of the hotel. This was the doorman's idea and not mine. We finally stopped when Nick crushed one and the doorman decided he wanted to keep his job. Then, we took the pedicab to Central Park and rode around for 3 hours and hit wiffles in the sheep meadow. Nick fell asleep about 8:00pm as this was by far the busiest day he has had in a long time.

Today was a Monday----we started at 7:30am with some miserable contrast stuff that he has to drink for a CT scan. He didn't want to drink it and it took multiple tries from multiple people to get it in him by 10:00am. By then, our 8:00am CT scan appt. was long gone so they got to meet me as I was not taking no for an answer. The scan got completed by 1:00 and we returned to the hotel. I am now behind on work and trying to catch up.

Tomorrow, we have a bone marrow test and then maybe we will get the ok to fly home but his counts were still not all the way up today so Wednesday may be more realistic.

NY PediCabs

After seeing his mom and grandmother off to the airport, Nick sat around on the couch like he has been doing since we returned here after Labor Day. Then, around three o'clock he agreed to go to the Blacksheep Irish Pub and watch the A's clinch it. Fortunately, since they lost, the game was not on so we didn't stay long and instead went back to the hotel so I could listen to them lose. At least I didn't have to see it. Magic number still 2.

After the game was over, I walked up to Grand Central and rented a Pedicab and driver for a big tour of NYC. My only requirement was that the driver spoke English perfectly and that safety crossed his mind once or twice. It wasn't easy but I found a 60 year old Irishman named Sean O'Connor, told him what I wanted to do and asked for a price. He said it was for Nick and it was free. I explained a few things about business to him, handed him some cash and said lets go!

So, we go back to the hotel, pick up Nick and end up touring all over the city for about 2 and half hours. Nick especially loved Times Square and wants to go the huge Toy's R Us that has a Ferris Wheel inside it. Sean dropped us off at Wolfgangs for a steak and we ended up having a great time. It was one of the first "fun" things that we have done in NY since we first got here in July.

It is obvious that Nick's blood counts are finally heading North and I hope they stay that way.

Not Coming Home Today

We had a setback yesterday and won't be coming home this weekend. Nick was unable to complete his tests on Friday because his counts are still low. He needed both a platelet and red blood transfusion on Friday. The tests are rescheduled for next week.

After a long day in the PDH yesterday, Nick was really happy and doing well when I got back from my business trip. We stayed up real late watching a video of the 1973 World Series. The A's win that series every time.....Magic Number=2.

Good luck to Lawrence and Kenny in their games this weekend!

Meetings & Tests

Yesterday and today were full of meetings and tests. It makes for long days at the PDH. Carolyn and her mom were on duty today. All is progressing the way it should but there is a lot to do before the antibody treatment can start. We are still on target to fly home on Saturday pending the OK from the DOCS on Friday...which we expect. This is day 14 following chemo and although Nick dodged the hospital visit so far, his blood counts are still fluctuating. They should start going up for good anytime now. Once the counts are up, he will have his energy and appetite back.

Nick worked with his teacher for quite a while today and ordered Chinese food delivered to the room since he didn't want to go out again. He made ice cream sundae's for dessert.

Busy Day - New Information

From Carolyn:

Nick began his morning by receiving the Holy Eucharist from Father Rutler. I met Father Rutler yesterday while attending mass at The Church of Our Saviour on Park Avenue. We found through conversation that Father Rutler is a friend of George Bush, our President, and has stayed at the White House many times. Nick then went to the hospital for his usual blood tests. He needed both a platelet and packed red blood cell transfusion. This all took about six hours and we are now back at the hotel getting ready to go to dinner. This will be his first night out to dinner in 11 days. We will be meeting with the doctor tomorrow to review Nick’s antibody protocol. Since he is doing so well, they are changing his schedule and doing the tests this week. There is a chance he will be able to go home on Saturday for a WHOLE week. We are keeping our fingers crossed. Thank you for all your wonderful and encouraging messages, kind words, cards, gifts, dinners, ...you have opened your arms to our family and embraced us with your love, support, and prayers. You have all given us strength and encouragement throughout this journey and for this we are grateful.

Horns Honking

Horns are honking down on 37th and Lex as it is Monday morning here in New York. I am glad I can hear them since that means we made it through the weekend without a hospital visit. We will find out Nicks counts later today and have our fingers crossed that he is coming up and has dodged the hospital visit this cycle. We should also find out the likely schedule for the next two weeks as Nicks condition is supposed to be more predictable from here on out. We know that this week is generally slated as 'Recovery' and next week is 'Tests' The tests are time consuming and extremely important as they are the final word on whether or not Nick can start the antibody treatment which will put some normalcy back in our lives. They are expected to come back clean but we can't put the cart before the horse here. Tests that are already scheduled include:

• Echo/Ultrasound
• MIBG Injection & Scan
• Bone Marrow
• X-Ray's
• Pre-Radiation - Appts.
• Others?

Carolyn arrived safe and sound on the Red-Eye yesterday morning. This place has been a bachelor pad the last few days so it was nice to have her touch around here.

Kenny and Lawrence both played baseball this weekend. They both did fine and had fun but no wild heroics to report this weekend. Now, if Leanna would have been playing.....oh never mind.
As stated before, the Autumn Wind is not blowing in Oakland, that is because the boys of summer are planning on using the ball yard this October!!!

Sports Saturday

Nick is doing better today than he has the last few days. I am not going to say that he turned the corner but he is in extremely good spirits, eating nearly full meals, and drinking water, lemonaid and ginger ale. He is channel flipping between the Yankee - Boston DH, NCAA football and the Disney Channel. I wish the hotel could block the Disney Channel!

Low Counts

Nicks counts are low now and he needed a platelet transfusion today. He has had a backpack full of IV fluids all week and is totally ready for next week to get here and for this period after chemo to be over with. We are keeping our fingers crossed that we can get through the weekend without a hospital visit.

Kenny and Lawrence start fall baseball this weekend so I hope to report some W's and some knocks in the next update.

Still Recovering

Nick is better today than yesterday. He is in very good spirits and is eating better too. Unfortunately, we still have a few more days of uncertainty until his counts start coming up for good.

It has been good having my dad here all week. He got in Monday morning and has kept us company and helped by hanging with Nick from time to time so that I could do my work calls, hit the gym, and get an occasional break from the monotony. Thanks Dad!

Recovering

Notice the word nicely has been removed. The chemo is in full effect now and Nick is entering that nerve racking period where we have to watch closely for a fever. He is still in good spirits but he is weak and doesn't want to leave the couch. The anti-nausea medicine 'Aloxi' continues to work well. He worked with his teacher for about two hours today.

It is 50/50 that he will be admitted to the hospital by this weekend. His last chemo was a 95% certainty that he would be admitted so this one is much better but still difficult.

The recovery process takes 10-14 days from the start of chemo. We are only on day 7, so we have a few more difficult days ahead of us.

Recovering Nicely

Nick is recovering nicely. He is not real active and does not have a full appetite but other than that he is doing well. He is in very good spirits and enjoys playing blackjack, watching baseball, and of course playing play station.

The PDH has a school and provides private teachers so tomorrow Nick will spend most of the day there getting fluids and some schooling.

It is fall in New York City and I had to go out to Modells and get some sweats today. Unfortunately, the Autumn Wind is not blowing in Oakland!

Lots of people have asked us about the schedule .... here it is as I know it right now....subject to change, of course....

This week - visit PDH every day and recover from Chemo
Next week - continue recovery...stay close to PDH but hopefully not go in much.
9/25 - Tests all week
10/2 - Antibody Treatment & Radiation Prep
10/9 - Radiation
10/13 - Home for two weeks!
10/30 - Antibody Treatment
Home for 3 weeks....
Continue one week or a few days in NY and then home off and on until May.

Hopefully, we will make it home for a couple of the weekends between now and 10/13.

No Treatments Today!

All Nick needed was anti-nausea medicine and nothing else today. His counts are expected to go down the rest of this week but for now, he is doing good. He doesn't have much of an appetite but he is drinking water and ginger ale and is in good spirits.

Out of Hospital!

Nick was discharged at about 1:00pm today and has had a fun time with his brothers. He walked to Grand Central and shopped at the Discovery Store. We rode a peddle cab back which was a lot of fun!

Chemo Complete! Still In Hospital

Nick should get out this morning as they wanted to continue fluids and monitor his electrolytes over night. Also, they wanted to spare us from having to deal with the cancer urgent care facility which is our only option on weekends and holidays. Nick needs aloxi and blood tests this am and if he did not stay as an inpatient we would have to spend a great deal of time at the urgent care and they are about as efficient as a post office or DMV.

Lawrence and Kenny played with Nick in the hospital all day yesterday from noon until about 10:30 last night. They are looking forward to getting him back to the hotel and just kicking it here most of today.

I heard somewhere that football season starts today but for me football starts after the A's season is over and right now, they are in a hunt for a Green October!! And....Da RaaaDaas will remain undefeated at least until tomorrow! And, the 0-47 Giants are not 0-48 yet as they have been playing really good baseball and just may get to the playoffs. This is the best time of the year for sports and the baseball pennant races are the greatest!

Chemo Day Three - Admitted to hospital

Nick is still doing well! We went to the Chinese place last night and Nick had a full meal. It was great to see him eat after not wanting anything all day. Today, he had a decent lunch and hopefully will eat dinner as well. I think we owe his condition to a drug called Aloxi that is a super anti-nausea medicine. One dose lasts 24 hours. We hope it keeps working for him over the next few days until this passes.

We had to be admitted to the hospital because the PDH is closed on weekends. We might get out tomorrow afternoon but Sunday morning is also a possibility.

Nick and I are awaiting Carolyn and the boys who are on a delayed flight. @#$%@#$!@#$

Chemo Day Two

Another long day in the PDH! Nick ate 3 good meals yesterday and was in great spirits all day. We talked and talked last night and watched baseball and a movie back at the hotel. Today....the appetite is gone but he says he wants to go to the Chinese place so I hope that happens. His spirits are still pretty good but I can tell the chemo is taking effect.

Dr. Cheung visited us today for the first time and it was really great to meet him. He is the one that invented the 3f8 antibody. He explained the treatment and answered several questions that Carolyn and I had been discussing. His answers were very positive. Unlike me and Carolyn, it appears he did not attend Cal Poly or Sacramento State:

http://www.mskcc.org/prg/prg/bios/203.cfm

Carolyn's Aunt Margo and Uncle Tom from Cleveland are in town and they visited us in the PDH and will meet us at the hotel later tonight.

Chemo Starts Again

This chemo requires lots of fluids before it can be given and then it drips for 3 hours and then different fluids are given followed by a backpack full of even more fluids to go home with. Bottom line, Nick and I have been here for 9 hours today and both of us are ready to get out of dodge! Fortunately, the PDH rooms are nice, and they are private. I do my work and Nick watches the plasma, plays games and reads a little bit.

One day down, three to go, then recovery.

Back In NY

We made it back to rainy and "fall feeling" NY City. It certainly feels like summer is over back here. Tomorrow, Nick will start his 5th cycle of chemo and we hope this will be his last cycle EVER!

Having a blast!

Nick is doing great! His appetite is finally coming back and he is having fun with his brothers and friends. Check out the size of this bass he caught in our neighborhood pond! Kenny took the hook out for him and held it up for the camera.