Happy Halloween!

Hello Friends, Family, and Blog Fans:

Nick is really doing well this week. The side effects from the radiation (nausea) seem to be gone and his appetite is all the way back!! Carolyn's cooking and my BBQ have put about 7 pounds on Nick and he needs it. His hair is growing back! He has been going to school but it is not his favorite thing.....never was.....so nothing new here. Once he is there, he does great.

The weather here has been fantastic so Nick and Kenny have fished and played outside.

Lawrence and Leanna are very busy with their normal school activities. Lawrence played some baseball in Vegas and won his first basketball game yesterday. He had a decent tournament in the desert but not great....I allowed him food and water anyway....his team went 1-3 but they mostly beat themselves by playing pick-offs into triples and committing other defensive gaffes. Fortunately, Lawrence wasn't a part of the defensive gaffes and he even pitched an inning. Rocket shot to the second baseman, one out, walk, one hopper to the second baseman 4-6-3!!
What an easy game!

Tonight is Halloween and the kids are fired up. We carved the pumpkins last night. The kids look forward to trick or treating. Leanna is having a "few" friends over and with all the other neighbor kids stopping by I am sure it will be house-ape heaven around here but I wouldn't want it any other way.

We leave Sunday for NY to continue the 3f8 antibody. Hopefully, this will be one week there and then back home for 3 weeks. That is the plan but the plan can change based on testing and other procedures that they deem necessary.

Notice that Nick has graduated to the Sweatshirt Version of 'Cancer Sucks' Thanks Uncle Mike B for the sweatshirt!!

Update from Granite Bay

Wow...A lot of people must read this blog!! Thanks!

Several have asked for updates even while we are home....so, no problem, I will update the blog while home but probably only once every 2 or 3 days.

All the kids are busy with school and after school activites. Leanna has something going on constantly, Lawrence is playing baseball and basketball, Kenny is playing baseball and has a paper route and Nick went to school today for the first time this year. Carolyn and I took him there and he joined right in. At first he didn't want to go but once he got in the classroom everything was fine. Tomorrow, I have to take him for a blood test but that is about the extent of our medical visits while here.

It has been nice to work all week from my home office. I even went in to the real office today to get all the snail mail and say hello to everyone. These offices certainly beat the hospital trays that I have been working from.

Lawrence is playing in the Desert Fall Classic in Las Vegas this weekend. http://www.lvbaseballacademy.com/dfc/dfc-main.htm His team is called Hard90 and it is playing the 14u division. Their motto is "Always run a Hard 90" which I really like. Hope he gets a couple of rips for his old man this weekend....yes, I am going...someone has to chapperone him.

Thanks again to all those who continue to help us in many different ways.

Home!

We had an uneventful flight across the country and made it back about 6:00pm Saturday to Granite Bay which was just enough time to catch the last inning of Kenny's game. Nick is really enjoying home but doesn't have tons of energy. He really needs these two weeks without treatments to rest, eat and boost up his energy.

One More Day

We are flying home tomorrow! Today, we collect stem cells again and then we will have Nick's line removed. It needs to be out over night before getting on a plane or we would be on the late flight tonight. What a game last night!! New Yorkers cannot believe that neither their beloved Yankees or their miracle Mets are in the Fall Classic. Tigers in 6!

We won't miss these treatments but the people here are outstanding. Here are a few pictures of Nick during the treatments.

Radiation with Hillary and Sam.

Nurse practicioners Ester, Ursala, and Yi Chi

Surgeons, Dr. Kayton and Dr. LaQuaglia

Stem Cell Harvest Continues

The process of collecting stem cells is relatively easy on Nick but it is time consuming and annoying. It is also very important that we have enough in case we need them for a "rainy day" We are told that many relapse treatment options are available above and beyond the "full stem cell rescue" providing we have plenty of stem cells. The minimum number is 2m, the goal is 7m and we have about 2.3m right now not including yesterday's collection.

So, today, we will find out how many we got yesterday, probably collect again today, then get a platelet transfusion so that his line can be safely removed. If all that happens we can fly home on Friday. If they have to remove his line on Friday, we will probably fly home on Saturday.

I finally revealed to him that there is a Chevy's in Manhattan and he likes Chevy's so he reluctantly agreed to leave the hotel room. We took a town car there, ate, laughed and talked through the entire dinner, took a pedal cab home, and had a real nice time. When we got back I asked him if he was happy that he finally went out to dinner and he said...Not Really! Tough customer! He won't cut me any slack at all!

Slow News Day

We did another stem cell collection but we won't know the results until tomorrow. The day was uneventful. It has been raining hard here most of the day.

News you won't read about anywhere but here is that the Higgins Construction Softball Team that I have played on for about 15 years won the Roseville E League World Championship....way to go fellas!! My brothers Mike and Mark sent a nice picture of themselves with Mike sporting a "cancer sucks" shirt. I will spare you from having to see their mugs here but it was nice of them and the entire team to support Nick. I am told they passed out Nick Lynch pins and wore them during the games.

Busy Day - Not Very Productive

We started at 7:00am and headed to the PDH for a surgical procedure to remove Nick's central line and insert another thicker one in his upper thigh. They needed a larger line for the stem cell collection and when this process is finished, this line will be removed. That means he will get to come home without a line!!! That is huge!! Showers, hot tubs, pools, are in-play again.

Now, the rest of the story....the stem cell harvest didn't work very well. They want to collect something like 7 million cells per unit and only got .3 today. That is not good. Last time we did this procedure we had the same problem. We got something like 2.3 total for the whole week. That is why we are doing it again. Unless something great happens, we are going to be here all friggin week!!

I questioned the Dr. on his timing for this procedure and expressed my frustration and got the following answer...."As noted in the past, these things sometimes take several days"....so, I am officially scolded.

Nick's leg is sore from the new line but other than that he is doing fine. Like us, he is done with this NY visit and needs some home time.

First Antibody Cycle - DONE!

Wow! It was much more difficult than we expected but it is over for now. Friday was mostly like Tuesday, Wednesday, and Thursday....it was long and difficult but tolerable with no surprises.

The key fact is that Nick is NED (No evidence of disease!) but Neuroblastoma has been proven to leave behind MRD (Minimal Residual Disease) that cannot be detected by the tests. The 3f8 antibody has proven itself to attach to MRD and cause the immune system to attack it. 3f8 cycles continue until Nick re-develops HAMA (Human Anti-Mouse Antibody) which would reject the 3f8. HAMA will probably occur in March or April or May. The chemo Nick received killed the normal HAMA that we all have, making 3f8 possible.

We would be able to come home, now, but they want to collect more stem cells next week in case they are needed for a rainy day. If Nick ever actually needs these, it would be a real bad situation but they want to have plenty just in case. We did this collection once before but did not get the optimum number for a "stem cell rescue" procedure which is a 4-week in-patient nightmare. Lets not even go there! The national standard protocol is to do the rescue but MSKCC has found that the antibody can be used instead with better results. So, we are being spared this miserable procedure unless there is a relapse and other conditions that would warrant it. I pinned one of the doctors and asked him to speculate (which they never do) on how many days it would take to complete the harvest...he said later rather than sooner. I pressed him and asked him if he would buy a plane ticket for Wednesday and he said no. So, we are looking at Wednesday-Late, Thursday or Friday for coming home.

Can't plan anything....get to pay the full Y fare....We'll be home when we get back! I think this whole 1 week in NY followed by 3 at home really means 1.5 weeks in NY followed by 2.5 at home. If it is not one thing, it is another. He needs a new line, he needs a bone marrow test, he needs this test or that test, etc. The good news is, it is way better than being here constantly. I think Nick and I have been home 3 times for 3 days each since June 28th.

Baseball Update - Lawrence is up in Redding at http://www.bigleaguedreams.com/ playing a tournament. This place is incredible and I know he will have a blast....get a couple knocks big L!! I can't think of any other baseball news going on.

I am really being long winded today but you are totally up to date now and I will give the blog a rest until Monday. Thanks again to everyone who is helping out!!!

Our friend Henry...who I met hanging out in front of the hotel with his Escalade looking for airport rides....takes us to the PDH in the mornings when he is not busy and he won't take a nickel for it. Nick was stoked to ride in style yesterday.

One More Day

Thursday was by far the best day of 3f8. It was still difficult but it was better than Tuesday and Wednesday. Nick needed less morphine and less visterol/benedrol (which controls hives) than the days before. That means that he is not a total noodle tonight and is watching the Mets - Cards game with me. He had a full dinner of spaghetti and meatballs which Blooms delivered to the room and is enjoying a rootbeer float right now.

Things are definitely looking up.

I am happy to report that our ride back to the hotel cost $9 as usual and I didn't have to commandeer any town cars today. I even had a good day at work!

Nick and Kenny last Sunday riding a pedicab to Central Park to hit wiffle balls and run remote control sail boats.

Wednesday Tolerable

Wednesday was like Tuesday...no fun at all but it was tolerable for Nick and me. Two more days and counting!!!

The day had unfortunate anxiety with the plane crash 3 blocks away from the hospital. MSKCC is at 68th and York and the plane went into the building at 71st and York. I was very concerned if I had to evacuate Nick out to the streets as he was sleeping from the morphine and it was raining outside. That would have been difficult. Once we found out that the accident was not terrorist related, it was just an inconvenience. It cost me $50 bucks to get a ride back to the hotel. It usually costs $9. Some town car guy that is not from around here dropped off people and I opened the back door and got in. I am becoming a New Yorker as 'NO' was not an acceptable answer when he told me that he could not pick up street people like me. The $50 bucks changed his mind. The streets were all closed and there must have been 100 people ahead of me waiting for the normal cabs that were not coming. I am still stewing about the $50 bucks since that buys a great steak at Wolfgangs but I am getting over it.

3f8 Antibody Continues

Yesterday was better. We switched from Dilauted to Morphine and it worked much better for Nick. In fact, he woke up two hours later and asked if they started the "mouse" yet. He had pain but apparently didn't remember it.

MSKCC recently switched the 3f8 protocol from two weeks to one week. They now give a double dose for one week instead of spreading it over two. Obviously, this has pros and cons. Here is what we know:

• Hundreds have received 3f8 and they come here from all over the world to get it.
• It works. It works especially well in cases like Nick's where all tests are NED.
• The main side effect is pain.
• The first day of each cycle is always the worst.....it was horrible!
• The pain is usually managed with pain meds.....this was true yesterday!
• We will be finished with this first cycle on Friday and not start again until 11/6.

What we didn't realize is that Nick would basically be 'affected' all week from the pain medicine. Other parents and nurses told us that the kids were ok once they got home but this was during the two week cycle. Nick came to about 9:00 last night, ate a few snacks and went right to bed. He slept nicely without pain and is still sleeping at 8:00am. I think he will be fine when he wakes up and I will get him a nice breakfast and then we will head off to the PDH for more. To sum it up, we expected a few hard hours at the PDH each day but not a full week of pain and the effects of pain drugs.

Nick clearly knows the big picture and although he doesn't want to go in, he never complains and he knows that he is fighting this beast and that he is winning. Thanks to everyone who contacted me after reading the blog yesterday.

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I am not the best mood to talk sports right now but have to mention that the Higgins Construction Men's 'E' League softball squad swept a DH Monday night and is now the number 1 seed going in to the Roseville 'E' World Championship next Monday. Can you tell they really miss me? Dan...take 2, then go op-o ... it's your best chance!

Painful Monday

Nick started the 3f8 antibody. It drips for only a half an hour and is known to be painful. Well, it was very painful. The hard pain only lasted for about 8-10 minutes but poor Nick was really hurting. It was very difficult. The pain medicines finally kicked in and the rest of the day was tolerable but not good. We are told the first day is the worst and that it will get better. I hope so as yesterday was the hardest day we have had. We were expecting pain but we were not expecting what we got.

I know everyone must be saying "There must be better ways to manage the pain!" Believe me, I feel the same way and asked that question yesterday and will ask it more aggressively today. In my view, the pain and aftermath that Nick experienced yesterday is not acceptable. The answer I got is that the first day is the worst and he did very well.....whatever!

I have to remind myself constantly of the big picture that is going on here. Nick has "No Evidence of Disease" and this antibody has proven very effective at killing any remaining cancer cells in Nick's body. Multiple people including the doctors, nurses, and parents of long term survivors have told us how fortunate we are to have reached this stage of the treatment.

Lets hope today goes better!!

Easy Weekend

Kenny and Nick are playing lots of different games in the hotel and we are just taking it easy. The weather here is beautiful today and since the street fair is on Lexington we will probably check it out a little later.

Good luck to Lawrence in his DH today. Hope he gets a couple of knocks!

Radiation 10 Down - 4 To Go

Nick finished 10 cycles of radiation this week and will continue with 4 more Monday and Tuesday of next week. It will be nice to put another treatment milestone behind us. Also on Monday, Nick starts the 3f8 antibody. The main side effect is that it can be extremely painful since it attaches itself to nerve cells as well as neuroblastoma cells. They can mask the pain with medicines but not eliminate it. So, we will have another full week of treatments next week. The schedule now looks like this:

Mon - Tue - Radiation and 3f8
Wed - Fri - 3f8
Weekend in NY or Detroit??
Mon - Wed - More Stem Cell harvest then home for about 2 and a half weeks.
Nov 6 - Return for more 3f8

Oh....and so far it looks like one team from California is moving on for a chance to play in the fall classic. It was very exciting to see my boys from OakTown come through. Bring on the Yankees! I don't know if they will earn thier chance to play the green and gold but if they do, they are a mere 20 minute 4 train away for Nick and I. Otherwise, we might have to fly to Detroit for the weekend.

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Easier Today

Since I had a 9:30 conference call, I let Nick sleep until he woke up which was about 10:00. He got his own cereal as I finished the call and then we raced to radiation....arriving about 11. Unfortunately, they couldn't take us until 12 which meant we couldn't come back until 6 for the second one. No problem, we went upstairs to the PDH so he could work with his teacher and I could work on the computer. Everything worked out well today and tomorrow we are hoping for more of the same.

Next week is the big 3f8 antibody week.

Oh, and just to brag again about Kenny....here is a quote from his coach in reply to my email asking him if it was a check swing down the line or a popup that nobody caught..etc...

"Nah.. It was a stone cold line-drive past the centerfielder, He hit it right on the screws to left-center. He has a solid swing as long as he gets his body moving early and doesn't stand flat footed. Great confidence booster, the dugout was goin crazy, everyone was high-fiving him after the inning was over"

That's what I'm still talkin about!!!



Above is a picture of Nick last weekend in his favorite shirt, trying to beat Lawrence at Ping Pong...which is not possible...ask Uncle Greg or me...and Kenny leaving for a Mudhens Game.

Busy Again

Cab to MSKCC - Radiation - Upstairs to PDH - Finger Stick - Work with teacher while waiting - New height & weight (he is gaining) - Meet with the nurse and Kushner - get aloxi for nausea - get central line dressing changed - get insulfon port inserted for daily GM-CSF shots - get instructed on how to give the shots - give the shot - work with teacher some more - wait around until 5:00pm - get more radiation. Whew, it was really busy yesterday.

Thankfully, my mom and dad were here M-W to help out. That allowed me to also keep my full work schedule. I can't wait to do my calls from something other than a ^&*(&* cell phone that breaks in and out.

Today is radiation only, so it should be easier.

Some really excellent baseball news ..... This just in from under the lights at Maidu Park ... The Lakeside Mudhens won and Kenny's coach emailed me late last night to say that Kenny hit a bases loaded 2 out double to clear the bases! Now, that's what I'm talking about!!!

Oh yea, the A's won again, too, but us A's fans don't acknowledge 2 game leads in ALDS play. The A's have a history of going up 2-0 only to lose the next 3 straight. Smack talk will be alive and well once they advance.

Thanks again to mom and dad for making the trip out here. Carolyn arrives tomorrow.

Long Day at MSKCC

This morning started out in the radiation oncology department. That was finished by 11 so we went for a late breakfast at a diner that Nick enjoyed. By then, it was after noon and all the beds were gone at the PDH so we had to get his blood transfusion in the recliner area. This was not the greatest but pre-meds made Nick sleep through the 4 hour process so it was not that big of a deal. Once he woke up, we went back to radiation oncology for his second treatment.

Everyone here loves Nick! He never quits asking questions and telling stories. He told the techs yesterday that he liked Journey and the Eagles so they burned him a disk and blasted the music for him while he was being zapped. I thought that was outstanding and I told the techs how thoughtful that was of them.

We finally finsihed about 6pm, had dinner, and came back here to watch the Yankees - Tigers. With the games starting at 8:15 there is no way we can go out to the Stadium. Anybody notice what happened in the earlier ALDS game??

Carolyn reports that everything is well back home. Thanks again to everyone who continues to help us.

Radiation Begins

Radiation is not exactly fun so my tone is not quite like yesterday. However, the first day is done and all Nick experienced was a little nausea which Aloxi totally took care of. Tomorrow, he needs a red blood transfusion in addition to two rounds of radiation so it will be a long day at the PDH.

Nick wants me to add that all he wanted was a decent meal tonight but his mean ole dad made him go to Sam's which he totally hates. The place is great but he wouldn't eat anything. He even said the bread was bad...even though he didn't try it. So, I went to the Dag and got him a DiGiorno Pizza and baked it for him at the hotel....he is downing it. I thought he would like Sam's once he got there but what a hard head he has....no way he was giving in on Sam's.

As for sports, I am done with predictions as the Raiders embarrassed me yesterday. One thing I do know is that the A's are in the playoffs and that the baseball post season is even better than the great pennant races we had this year. The staff here at the hotel delivered Nick a really nice Yankee care package. When people ask him if is a Yankee fan he says...No, I am an A's fan but I am becoming a Yankee fan. The entire staff here at the hotel knows Nick and really go out of their way to help him. The Yankee thing is a little much....we gotta get out of here soon!

Changing Planes

Nick and I are in Denver changing planes....while there, I was feeling good about the Raiders but they blew a big lead while we were flying. ..we are now in NY and everyone should please dis-regard the previous transmission....Hope nobody read the previous blog .... Wow...Raiders...Horrible!

Our visit home was a quick one and many people we wanted to see, we didn't. Can't wait for the three week stint which is coming up. Nick said his highlights were seeing his brothers and sister, fishing at Grampa Pats, and hanging with his buddies Riley and Ryan. He really enjoyed going to Togo's with Ryan and asked me if there was a Togo's in NY.....uh...NO.

We have a miserable week of twice a day radiation treatments ahead of us. That stinks. But, Nick should be feeling good and we want to go to both a Yankee playoff game and we want to fly to Minnesota to watch the 4 time world champions if there is a game this weekend. If we can pull it off, we will do it.