Granite Bay

Yesterday afternoon we got the final OK to head home for the weekend and bolted for Kennedy and made the 8:30 flight for Sacramento. We got home about 2:00am and everyone is happy to be here. We are looking forward to a relaxing weekend!

Thanks to everyone who helped while we were in NY!

Great to be OUT!

It is really great to have Nick out of the hospital and feeling pretty good. He has still needed to go in for checkups and yesterday he needed a platelet transfusion. He may need both platelets and red blood tomorrow. He made it across the street to his favorite Chinese restaurant last night and I think he is considering Uncle Jacks Steakhouse tonight.

It has been raining quite a bit here since the weekend which has made my travel to off site business presentations both yesterday and today a little interesting. I only brought one suit here so it was a challenge to keep it clean yesterday to wear again today....I managed but then tore it on the train on the way home.....pinned it and wore it today anyway....nobody noticed.

We miss everyone back home and are hoping that we get there soon. There is a possibility that we can come home this weekend but we won't know for sure until tomorrow.

Discharged!!!!!

We just arrived back at the hotel and all of us are very happy to be out of the hospital. Nick is watching the Yankee - Angel game and is very happy and comfortable. We are going to get him walking around a little later. He has basically been inactive for 26 straight days so we have to ease him into some walking.

Better and Better!

It is a rainy Saturday morning in New York City and Nick is doing a lot better now and his counts are improving. The fevers are gone, the pain is gone, and the infection is gone! Today, he is getting a platelet transfusion because he had a bloody nose. He ate better yesterday and we are hoping that maybe later today they will let us go back to the hotel.

The month of August, 2006 will never be forgotten! We knew it would be tough and it really was. On the positive big picture front….the tumor is gone!....all organs are in tact and functioning properly!....the bone marrow is clean from cancer!....and the scans don’t show it anywhere else!....Nick has completed 4 cycles of chemo with one to go….then the treatments get easier when he starts the 3f8 antibody. This antibody is designed to get any remaining cancer cells that are likely present but cannot be detected by the normal scans and tests.

I hope many of you go to the Reno Rib Festival next weekend as it will be hard for them to make money this year without me and the boys attending. Hopefully they will survive this year without me and be back next year!!! http://www.nuggetribcookoff.com/

A tough night...But better today!

Nick had a tough night on Wednesday but a pretty good Thursday. We think he will be out of the hospital soon. I don't think it will be today but maybe Saturday or Sunday.

Better Today

Nick had a decent night and a better day. They removed his central line, which was infected, and replaced it with another one. This is a surgical procedure that just takes a few minutes. It went well and his fevers are fewer and lower. The antibiotics are kicking in and he is eating much better. We are almost out of this one.

Infection and Fevers Continue

Now, they know what the infection is and an antibiotic that takes care of it was started yesterday. We think and hope that by this time tomorrow the antibiotic will be working. A few more days.....!!!!!! Nick is in really good spirits tonight and visited with his Aunt Linda from Vermont. He is really happy to have his mom here. Later, he played blackjack with me and watched games on TV.

I heard from some long time old friends on email today and that is always nice. Also, one of my work friends told me about his niece that was newly diagnosed with cancer....we wish her well and hope that she digs in and knocks it out of the park!!!

Infection & Fever

Nick is on three antibiotics trying to beat an infection that happened because his white blood count goes to zero from the chemo. It is not working yet but he is stable and the doctors are confident that it will start working soon. Although this is very difficult for all of us, we are being told that this is totally expected and that there is nothing you can do to avoid it. All you can do is treat it once it happens and we are doing that. Nick, although quiet, is keeping his spirits up and being tough through it all.

In Hospital

At about 2:00pm on Sunday Nick got the fever we were expecting since Friday and we are in the hospital. His counts are at rock bottom and we could be in here the better part of the week. We are assured that this is "expected" and that there is nothing to worry about but I'm worried and they know it.

We have their attention.

Nick's fever is down now and he is resting and watching the NY-Boston game. We will have more info tomorrow. He will get IV antibiotics, red blood and platelets over the next several hours.

This cycle has been awful!!

Still at Hotel

It is 10am in New York City and we are still at the hotel!!! Nick seems better this morning. He is just watching ESPN intermixed with playstation. Cap'n Crunch and water is his breakfast as I can't talk him into anything else.

Rainy Saturday Night

Another day of hanging out in the hotel as Nick does not want to do anything. Thankfully, he is comfortable but totally not himself. He nibbles on stuff and drinks a little water....then snoozes and watches TV. He is looking forward to Carolyn flying in tomorrow...Hopefully, we will be here at the hotel and not in the hospital.

Another few days and he will REBOUND.....Can't wait!!

Friday Night

After a rough night and worse morning, Nick finally rebounded this afternoon after some IV fluids at the PDH today. I am assured that he is experiencing an "expected" reaction to 4 cycles of high dose chemo and surgery. He is way better right now and just kicking it on the couch watching the Yankee - Boston DH. He is talking up a storm and asking all kinds of baseball questions which is sure nice compared to yesterday. They sent him home with a backpack full of fluids and he ate a decent lunch and is drinking water.

The doctors expect him to be admitted over the weekend since almost nobody gets through this cycle of chemo without admission. We are ready to head over to MSKCC upon any sign of a fever.

So far --- so good!

Bottom Line --- Nick is beating this beast!!!!! But the treatments are very difficult.

Chemo---YUK!

The overall situation is excellent but watching Nick go through this 4th cycle of chemo is very difficult. He is just not himself but he is fighting it and has not had a fever or needed a transfusion yet and it has been 7 days since he started this cycle. He just ate a half of PBJ and drank a couple cups of water...which is very important. We go in again tomorrow and should have some more information.

Can't wait to get past this one!!!!!

Laying Low

Nick is comfortable but doesn’t have much energy. We visited with Uncle Gary and his priest friend but we couldn’t talk Nick into walking out to dinner. So, me, Nick and my dad had food delivered to the room and we watched the Yankees which was the only game on the hotel TV.

Nick ate a decent amount of food and eventually drank a lot of water. He eventually perked up and said he wanted to go with Grandpa as he was walking out the door and heading for the Dag to get us some coffee for the morning and new paper towels. I threw my shoes on as well and the three of us had a little shopping trip. Nick pushed the cart around. The trip back wore him out and we all hit the hay early. It wasn’t much but it was sure good to see him perk up like that.

Tuesday Morning

No blood needed….Nick is doing well….he meets with the surgeon today to close out his involvement…..

Leanna, Lawrence and I went to Sams last night and had a great meal, Kenny, Nick and Carolyn stayed in the room and ordered takeout from Blooms….they love the place…and watched a movie.

Carolyn, Leanna, Lawrence, and Kenny are at the airport now getting ready to fly home. Nick and I are staying here but my Dad is flying in to hang with us for a while and Carolyn’s Uncle Gary is also going to pay us a visit.

Out of the Hospital!!

After 10 straight days, Nick is now out and all of us are relaxing at the hotel. What a relief it is to be out of the hospital. A major chapter in Nick’s treatment is behind us!!
He handled it with such courage….talking and laughing with the doctors’ as he headed into the operating room, facing the challenges of recovery and the side effects of chemo.


From Carolyn: Nick had a few things which he said while in the hospital that I would like to share

On Tuesday, August 8th: We finally were able to get Nick out of his hospital gown and into his clothes and he exclaimed “Ahhhh…..I finally feel like a normal person again!”. (He had been favoring the gown because he did not want the anything around his waistline rubbing against his scar).

Wednesday, August 9: Nick’s doctor came into the room to let us know that they were ready to begin chemo. Nick immediately looked at him and replied “But I am not fully recovered from my surgery yet??!!” While we all agreed strongly with Nick, we knew the importance of keeping on the treatment schedule.

Thursday, August 10: Nick got up at 6:00am not feeling well. He headed into the bathroom due to stomach cramping and diarrhea. I helped him get cleaned up and he climbed back into bed and we both said “I love you” and then Nick replied “Mom, I don’t think I would have got this far without you….and Dad.” Even in his weakest hour, he is thanking us for our help. It brought tears to my eyes.

His spirit never ceases to amaze us! He has stepped up to this challenge with amazing strength and his demeanor and wit have a way of putting us all at ease. Sweet New Year battles on!!

Chemo Continues

Nick wanted to stay in the hospital one more night as he wouldn’t have been released until after 8pm anyway when one of his chemo’s finished dripping. It is a good thing we stayed because he had some “expected” side effects kick in and the hospital was able to address them right away so that his pain was short lived. One of the chemos causes jaw pain and another one causes nausea and constipation. These are mostly offset by other drugs but can be very painful and annoying if not dealt with. Other than that, he had a pretty good day but he has had better ones. Only one more day of chemo! Hopefully he can come home tonight.

Chemo Started

Happy 49th Anniversary to my Mom & Dad!!!

Nick is recovered from the surgery and will be discharged to the PDH tomorrow where chemo will continue on an out-patient basis. When the PDH closes at 6pm, he can come home to the hotel with us and return in the morning. It will be nice to have him at the hotel for a few days and especially the weekend.

We hope the above works as planned and that we don’t have to continue the in-patient situation that we are dealing with now. Of all the foods we offered Nick, both him and Kenny chose pizza from a joint on the corner. They both feasted on it! Kenny stayed with Nick while Carolyn, Lawrence and I went to a real restaurant that was just ok.

Our highlight of the day was meeting a friend from Granite Bay that moved to CT. Their daughter had a rare cancer that was treated and cured by MSKCC and she looked great and gave Nick lots of encouragement. You would never know she was in the same situation as Nick just two years ago.

Chemo Tomorrow

Nick is unhooked from everything, is eating, and walking all around the floor. His reward for recovering ahead of schedule is the starting of his 4th cycle of chemo!! This is actually a good thing because keeping to the schedule is very important in the overall outcome. Any remaining cancer is in the process if being killed! Nick understands and continues to be in great spirits. Right now, he is in the game room playing with Kenny.

Tonight is our 7th straight night in the hospital…a new record! But, it doesn’t matter because better days are ahead.

Uneventful Monday

Nick continues to recover. He started to take in clear liquids and this is a major step as his gut is now working properly. Maybe tomorrow, he can eat something solid.

He was totally pumped to watch “Family Guy” with Lawrence and Kenny. In addition, Lawrence brought in a Journey DVD of a concert from 1982 and they all watched it and they think those guys were really cool!!! I think I first saw Journey in 1976 at the De La Salle gymnasium!! It is great that our kids like our music!! Don’t stop….be….leeeeee…..vin!

Sunday in NY

Nick is still recovering at MSKCC. Yesterday, he had a few minor setbacks with nausea but nothing serious. Today, he walked around the floor and is doing better and better with each day. He still has significant pain which is being managed with two different pain medicines.

Our favorite quote from Nick on one of the flights in….”wow dad, when you look down at New York at night, it actually looks nice!”

Out of ICU

It was a long day at NY Hospital and it took longer to transport us than it should have but we are back at MSKCC and Nick is out of ICU. All the tubes are gone and he is doing way better than we expected. He stood up and sat in a chair today. The goal for tomorrow is to continue managing the pain, and maybe walk the halls and start eating.

Recovery Update

Only one tube left! It should come out later tonight or tomorrow. The nurses are calling Nick an overachiever.

I am just hanging out with Nick at the hospital as Carolyn and I take turns being with him. Thanks to modern technology and high speed internet cards, I am able to do my job from the hospital and/or hotel room.

Many people have asked us what treatment is left since the tumor has been removed and the bone marrow is clean. Next, they have to remove the cancer that they cannot see and that does not show up in the tests. Fortunately, I just spoke with Dr. Brian Kushner (Nicks Oncologist) at length and have confirmation of the following update. This is mostly the same as before but it sounds like the antibody treatment could be easier than we first thought. Here is the schedule…subject to change….all dates are estimates:

8/10 - Start next chemo - CAV
8/25 - Collect more stem cells when his counts start to recover.
9/3 – Lawrence’s birthday---maybe get to come home for a few days.
9/10 – Start last chemo – P/E
9/25 – Maybe get to come home for a few days.
10/1 – Lots of tests, Antibody starts, 3F8
10/7 – Radiation
10/14 – Home for two weeks
November - May - In NY for 5 work days, then home for 25 days.
REMISSION and continued tests to make sure it stays that way!!!!!!!!

For anyone interested in more details on the treatment, google CAV, P/E, 3F8, and check out the publications link contained in these links on Nicks main doctors:

http://www.mskcc.org/prg/prg/bios/43.cfm
http://www.mskcc.org/prg/PRG/bios/207.cfm

Other Doctors colloborating on Nick's case are Modoc, Kramer, and Cheung.

Recovery

Nick no longer needs a breathing tube and later today they may remove his nose tube and internal monitor tube. He is doing well and is ahead of schedule on his recovery. Carolyn stayed with Nick in ICU last night so today and tonight, I am on duty.

Both sets of grandparents were here for his surgery yesterday and are staying the week. The all got to see Nick yesterday but today he will actually recognize them and say hello to them. Kenny has really been a trooper through this whole thing. He misses Nick but enjoys being a NY tour guide for his grandparents.

Surgery a SUCCESS!!!

Dr. LaQuaglia just left the consultation room and Nick’s tumor has been removed!! There are no complications and all organs and glands are saved. Nick will be in ICU tonight at NY Hospital across the street from MSKCC. When we thanked Dr. LaQuaglia for a successful outcome, he immediately pointed upwards …..he’s a very religious man and let all of us know the importance of thanking God first and foremost. I will update you later on any recovery news!!!!!!!!!!

We are very pleased!!!

Surgery Tomorrow

After a great weekend at home, we are back in NY for the surgery. Nick passed all the pre-op tests today and we must be in the prep area at 6:00am tomorrow morning. The surgery should start about 8:00am and according to Dr. LaQuaglia the surgery will last
“ as long as it takes to do a good job”. Following surgery, Nick will be sedated for several days and will likely be in the hospital for 7-10 days including some possible ICU time. Dr. LaQuaglia uses a technique that “peels” the tumor off the organs and vessels leaving no “margin” or residual behind. The goal is to remove everything he sees and then zap the rest with chemo, radiation and the antibody.

We can’t wait to put this step of the treatment behind us!! We hope and pray the surgery is a success and Nick can then move on to the next step in his treatment.

I took a few days off from updating the blog but I promise to update it once we know something tomorrow. Thanks again to everyone for all their support, prayers, meals, cards, gifts, e-mails, bats, balls, pictures, autographs!!! Etc. Nick really lights up when he gets them. We recently received an autographed picture of the governator saying “To Nick”…and signing his name…In addition, both Derek Jeter and Jason Giambi sent Nick signed baseballs. Mark Ellis (of the 4 time world champions) sent Nick an autographed picture with Nick in it from “take the field with the A’s” Nick really loves the engraved real professional bat he received from one of our Little League friends who played a long professional career. All these things are really helping him cope with the situation!! THANKS!!!!!