Nick is now fully engaged at MSKCC!

From Ken:

The home nurse is showing us how to administer the antibiotics and we have all the supplies we need. Nick and I spent most of the day doing tests, etc. while Carolyn helped Leanna, Lawrence and Kenny get settled. Tomorrow, he has a nuclear medicine test in the morning and then should be free the rest of the day and Sunday. Monday, he is scheduled for a detailed bone marrow test. We are hoping that he can get out of that early afternoon so that we can take a train from Grand Central to upstate NY to BBQ and watch fireworks at a friends place. Then on the 4th, we are told that fireworks along the East River and Hudson are incredible.....we are looking forward to it. After the 5th....more chemo...YUK!

From Carolyn.....Nick is doing great....at the moment he is sitting on the floor building a Lego that we bought for him at FAO Schwartz....what an incredible toy store. We ran into Dee and Isabella Rocha from Granite Bay. What a small world! Leanna, Lawrence, Kenny and I walked and shopped on 5th Ave today. We went into St Patrick's Cathedral, the largest Roman Catholic Cathedral in the U.S., to say a prayer for Nick. What a beautiful place. Yesterday it began to rain as Nick, Ken & I left the hospital.....Nick was so excited to be in a summer thundershower and asked that we walk a few blocks in the rain to enjoy it. When the rain got heavier and the thunder began, we hailed a taxi back to the hotel. Nick kept enjoying the rain out the hotel window and waiting anxiously for his brothers and sister to arrive at JFK. While looking out the window he said, "hey Mom...look at the Empire State Building". Together we looked out the window and the Empire State Building was lit up red, white and blue. Nick was amazed. It is so fun to experience the "joys of the city" from a child's eyes. Miss everyone.....Happy Birthday to my Mom, Grandma Pat!!

Busy in New York

From Ken:

Nick had a very busy day getting settled at MSKCC. They are continuing his antibiotics on an outpatient basis....that is right....outpatient. They do almost everything on an outpatient basis including Chemo. They send the kids home with little backpack pumps and other devices to administer the medicines. Today he has a full array of tests and will meet the Oncologist for the first time. More updates over the weekend....

Lexington Avenue

From Ken:

We arrived in NY very late due to weather and air traffic delays but we are here. The place we are staying is big enough but just ok....it is not a dump but it is not the nicest place I have ever stayed either. We have appointments with realtors to look at apartments over the next few days. Nick is here with us and we will go to MSKCC as soon as possible tomorrow to continue antibiotics....we hope it can be done on an out-patient basis.

Start Spreading The News!

From Ken:

We are leaving Wednesday....we think....At about 6:30pm Tuesday we got the final OK to put Nick on a plane and now we are waiting to see if we have to go straight to MSKCC for more antibiotics or, can we go to the hotel and show up on Thursday AM. It has been an anxiety filled week trying to get ready to go. The great news is that Nick is doing great and in great spirits. Many people have asked for contact information in NY....we are not sure yet.....but our cell phones and e-mail will work great and our mail is being forwarded to us about every 3-5 days. We do not know our schedule yet, but our guess is that for 6 of the next 8 weeks we will be in NY and then it should lighten up with some Granite Bay Time intermixed between visits.

Antibiotics continue

From Ken:

The drill is antibiotics and more antibiotics. Nick had an infection so they are real cautious and unfortunately that means a lot of days in the hospital. We are now told that he must stay here until Wednesday morning, fly to NY, and then go to Sloan Kettering to continue the antibiotics. Yes, the doctors agree that it is safe to fly. Nick is doing great and had a fun day playing with his brothers, Leanna and a friend. His grandparents all visited and I played a lot of blackjack with him.

Questions/Answers from Carolyn

From Carolyn:

Ken has been keeping the blog updated on a daily basis and I have been keeping my own daily journal. The journal I have been compiling is mostly filled with Nick's thoughts and questions throughout his illness as well as his daily progress. Nick has been so strong and brave throughout this ordeal. He asks so many interesting questions about his treatment and some of these I would like to share with you.

"Why does the cancer grow?"

"Why can't they cut it out?"

"Once chemo is complete, can the cancer return?"

And

"Do the GCSF shots(the ones I give to him for 10 days following chemo)have white blood cells in them?"

Ken and I together answer his questions as honestly and thoroughly as possible.. As you can imagine, some of the questions are really tough. I have wanted to cry at times as I look into his big, trusting brown eyes to give him answers. Of course, all I want to tell him is "Nick…everything is going to be okay." As he got ready to go back to the hospital Friday night, he went to both Lawrence's and Kenny's rooms' as well as Leanna's to say "good bye" and "I love you" before he got into the car to head back to Sutter Memorial. He didn't complain, even though we knew how difficult it was for him to leave the comfort of his home and his family and head back to the hospital. Nick has handled it all with grace and courage. He then called me from the hospital at 11:30pm to pray. Nick and I pray together every night prior to him going to sleep. He cups my hand in between his and we say our prayers. I then bless him with holy water from Lourdes and holy water from Poland which we received from friends.

We thank each and every one of you for all your love & support. You have showered us with thoughts, prayers, calls, e-mails, flowers, gifts and dinners and made our lives a bit easier throughout this challenging time. We cannot thank you enough and are blessed to be surrounded by such wonderful family & friends.

Uneventful Day at the Hospital

From Ken:

Nick responded to the antibiotics and has no fever or other issues. He just hung out in the hospital and we were fortunate to get the penthouse of Sutter rooms....Room 663. It is a private one bed only room with a huge bathroom and two sinks. To make it even better, they brought in a cot instead of the 1935 vintage reclining chair. It was a good day for all of us and we can't wait to get home again hopefully tomorrow but more likely Monday or Tuesday depending on his WBC....White Blood Counts. Then on Wednesday....New York City here we come.

Lawrence's team won a pair today and I got to coach the last 5 innings of the second game. Way to go Will H. who got the game winning two out rocket seed over the second baseman's head with the bases loaded and two outs and Lakeside down a run to win it in the last inning....that's what I'm talkin about. We had to get them out in the bottom of the inning and Jimmy saw to that! In San Francisco today...absolutely nothing happened at ATT park.

Right now, Nick and I are watching Sandlot at the hospital.

Slight fever, back to hospital

From Ken:

Nick has a slight fever and the drill is to admit him for a few days and give him antibiotics. A fever is very serious so they don't like to take any chances. It is very frustrating for us as he was acting totally fine and was having a great day. We are thankful that he was able to be home for Kenny's birthday and all of us had a nice time.

Happy 11th Birthday to Kenny Lynch!!!!

From Ken:

Another good day for Nick. He is likely at his lowest blood count today but he is still doing well. We have an appt. tomorrow AM to test his counts and possibly do a transfusion....lets hope not!

Today was a low key day at home for all of us except that I was in the home office from early to late with a phone growing out of my head. Lots of stuff going on at end of quarter. We had lots of visitors today including both sets of Grandparents and dinner was delivered by a family on Lawrence's team.....THANKS to everyone who continues to help us out.

On a very sad note...please type Debbie Hawk into Google News and add her and her family to your prayers.....I have known Debbie since I was about 16 and all of my family and Carolyn and her family are great friends with her and the Triantis family. She is a great person .... always laughing and happy, raising three kids, and something bad has happened to her. She has been missing for about a week. We heard that Greta Van Sustern of Fox News picked up the story. We have had Christmas traditions with Debbie and her family for about 30 years.

Happy Birthday to Mike Lynch---6/20/60...He is really old!!!

From Ken:

We celebrated Kenny's birthday also (6/22 - Thursday is his real birthday) but we went to Ruth's Chris tonight (his choice) to enjoy huge quantities of dead cow. The food there is always great and tonight was no exception. Nick ate an adult sized fillet all by himself and really enjoyed it. Our fingers are still crossed that we won't be back to Sutter Hospital. A couple more days before we are out of the woods and his counts are back up.

Right now, Nick is playing Guitar Hero with Lawrence and it is just great to have him acting like himself.

In case anyone is wondering, and I am sure you are not...but here is a partial list of Ruth's Chris steakhouses that have had the pleasure of serving me. They are by far the best chain in the country.....(Indy (one of the best), Minneapolis, Roseville, Sacramento, Maui, NY, Hartford, SF, San Diego, Atlanta, Baltimore, Chicago, Columbus, Denver, Kansas City, Philly, Phoenix, Pittsburgh, San Juan, Weehawkin.) Mr. Scott (a guy I work with) might have been to more but I am not sure. George B. has been to many of them with me and may correct me if I left a few out. This just in....I kinda like the place.

New Info--We leave Wednesday 6/28 for MSKCC. Our first appt is Friday morning. It is likely that we will be in NY from 6/28 until about 7/15 and then the entire month of August.

Another good day

From Ken:

Nick is still home and doing well. Thanks again to everyone who is feeding us, sending us gifts, wishing us well, and helping in countless ways. Carolyn and I really appreciate it.

Home after Round 2

From Ken:

Home!!!

Nick is home from the hospital, Carolyn is home from the hospital ....she did two nights in a row there....(reallysux) and my dad and I are home from NY after a quick turnaround trip...sortasux too...but different than what Carolyn dealt with....bottom line, not much sleep for any of us. Sleep is scheduled for tonight!!!!

We are doing great!! They let us out of the joint about 3:30 this afternoon. Nick got home, took a nap and then ate BBQ ribs and chicken legs and played with Leanna and his brothers. I can't tell you how great it is to have him home! Let's keep our fingers crossed that he can defy the odds and not have to go back to the hospital before we leave for New York!!

Happy Fathers Day to all you Dads out there!!! That goes for you, Dad! and Carolyn's Dad too!

Cycle Two of Chemo Complete - NY plans finalized!

From Ken:

Nick has finished his second cycle and should get to come home today. If it is like the last time he will not be himself and in some pain for the first few days, then his blood counts will hit bottom about Tuesday and then we really have to watch his temperature for signs of infection. Even a slight fever would mean a 3-5 day hospital stay. By Tuesday, the 27th he should be coming back around. I just returned from New York and have everything set to transfer his treatment there. We will likely leave for the first trip on/or about June 30th. The program Nick will be on will require us to be in NY for two week stints for the next few months. His surgery will be in early to mid-August and that will likely be a 4 week stay.

Chemo Continues

From Ken:

They keep dripping the stuff into Nick. Three different kinds. He is in great spirits and playing a pinball game on the computer that his Uncle "Bubble" Mike brought him. Our hospital roomates from Viet Nam are very nice but there are a lot of them and the place is really crowded!!!! Then again, there are a lot of us too!!!

Baseball....Kenny's team lost the championship game...Congratulations to the Lakeside Minor League Giants....unlike the SF team, they have a championship! Kenny had a nice hit up the middle and made a nice tag play at third....all in all, it was a great season for him.

Cycle Two of Chemo Started

From Ken:

We got Nick to the hospital around 11am on Tuesday morning and started with all the tests to determine if he is ok to receive the second cycle of chemo therapy. He passed them all and the chemo was started about 8pm. Carolyn is on the night shift on Tuesday night and I will be on Wednesday night. As for baseball...don't ask! and I won't tell. Lawrence's team really stunk up the town! A's won again though!

Cycle Two

From Ken:

MSKCC advised us to start and finish the 2nd cycle of chemo here in Sacramento at Sutter Memorial so that is what we are doing. Nick is like his old self right now but knows he is going to get whacked hard by chemo tomorrow. We had a great weekend, watched the 4 time World Champions sweep the Yankees....I always refer to the A's as the 4-time World Champions mostly because they won 4 titles and the Giants are the Zero Time World Champions....and Nick picked up on the sign at the Stadium in NY that said 26 Time World Champions. He called me on it and said "dad...the 26 time world champion Yankees just took a 5-4 lead" That was awesome.... I couldn't believe he hit me with that!!

Today, Kenny, Nick and I snuck on to a private country club with a guy from Oregon and a distinguished businessman and caught fish after fish in the lake by the par 3 number 3. The fish must like eating my golf balls because some of them were big! (The club is closed on Monday's and it is totally against the rules to fish but they have not installed cameras yet).....Oh...and this just in...Kenny's team is in the championship game. He is 4 for his last 4 and was 1-1 tonight with a walk and an RBI. They won 6-2. I am very proud of Kenny because he could care less about baseball until about 8 games ago and now he is fired up about it. I knew he had it in him somewhere. I am positive that cutting off his food and water was a totally appropriate motivational technique.

OK, enough of sounding happy....tomorrow, everything changes as we head back to the hospital.

MSKCC in New York!

From Ken:

Nick is almost like his old self. He's running around and happy all the time. The worst thing for him is the daily shot that Carolyn has to give him. This should be a good weekend and then on Tuesday he starts round two of Chemo.

After lots of research and discussions with dozens of people, and barring any more surprises, we will be taking Nick to Memorial Sloan Kettering in New York after this second round of Chemo. This seems to be a top notch institution and is said by many to be the best Neuroblastoma center in the world. A former chief of oncology at both MK Anderson and Stanford confirmed our decision and praised the physicians that we will be seeing. We really hope they can help Nick beat this nasty disease. www.mskcc.org or www.mskkids.org

We don't know about all the logistics yet and of course they can change but we think we can fly back and forth often and not be there for months on end. A neighbor offered us a flight on a private jet and an organization called corporate angels allows cancer patients to fly on corporate aircraft with empty seats. Also, the Ronald McDonald house is around the corner from MSK and we will be checking that out.

Doing Great Today

From Ken:

Nick is having a great day today. Almost like his old self, building Lego's, asking tons of questions and in great spirits. It is so great to have him home and to be out of that hospital.

So, how bout a sporting update??? Like you have a choice!....at the GB Softball Team banquet on Tuesday, Leanna won MVP, a Team Captain award and made All-Metro Conference again. She, led the team in hitting, RBI, and stolen bases. I know I mentioned this before but now it is official and I am so proud of her I am saying it again.
Kenny got the game ball on Saturday for a 2 run double he hit and Lawrence had a couple of hits last night in a victory over Folsom. On top of that, the A's took 2 out of 3 from Cleveland...so things are good today. Tonight, Kenny plays again and maybe Nick can make an appearance.

Nick is Home!

From Ken:

Nick is home! We are monitoring a slight fever and hope he can stay home. More updates tomorrow.

Hoping for home, not there yet

From Ken:

Nick is still in the hospital...counts still too low but coming up. I'll double down again for tomorrow. He is doing great and eating full meals. He is ready as we are to be home for a few days before they whack him with chemo again.

Still at the hospital

From Ken:

Still at the hospital. Nick is way better and played catch with me for a long time with a Nerf ball this am. He ate a full breakfast and seems ready to come home but the Doc says his counts are too low and we have to wait until they start rising. Of course, we were at home with his white blood count at zero and went to the clinic with his white blood count at zero and they said he is doing fine and sent us home. ????? Some of the stories we are getting are hard to accept. That said, he is safe and sound here and there is certainly something to be said for that!!

Nick is sitting here right now pulling out clumps of his hair...he says it is fun. He now needs one of the many new hats that he received including A's, Raiders, Golf, and a brand new Sweet 16 Bradley Braves cap that came straight from the head coach in Peoria!

Carolyn is taking over for tonight's watch as I have a full string of business meetings and web demo's starting at 7:00am tomorrow and I need to be in the office.

If I was at the Mill in Reno or the Wynn in Vegas, I would double down on Nick coming home tomorrow afternoon.

Still in Hospital

From Ken:

Still in the hospital. His blood counts are still not high enough so we are here for precautionary reasons. Nick is mostly fine except he is not his normal active self. He says some funny things though and is enjoying his books and TV. When both Carolyn and her brother Mike brought Nick the same goldfish crackers he said "I guess great minds think alike"

As for when we are getting home....best answer....we'll be home when we get back!....Just don't know.

Nick Staying in Hospital

From Ken:

Choosing to err on the side of caution, Nick is going to be in the hospital until Saturday morning at the earliest. If his blood work shows that in fact a bacteria is/was present yesterday, then he will be in all next week as well to make sure the bacteria was eliminated with antibiotics. Are we having fun yet??? I won't answer that. Nick's spirits are better today but he is still not very active. Certainly not himself. We are assured that his condition is an "expected" reaction to the Chemo he received.

A night in the Hospital

From Ken:

Nick spent the night (Wednesday) in the hospital for precautionary reasons as his temperature was fluctuating. We hope he can come back home this afternoon.