Prepping for 3f8

On Wednesday the Irish Doctor came over and put in another Insuflon in Nick's leg so that he could start the GM-CSF injections. As I mentioned before, this stuff boosts his immune system in preparation for the antibody that starts in NY on Monday. Unfortunately, an upset stomach is a usual side effect and Nick had that going on last night and this morning. He was a little late for school once again but he has attended every day this week and that is great.

Life has been mostly back to normal for the rest of us.

Drug Free Tuesday

Done with Accutane for two weeks! ..... and...Done with Bactrum until the next 3 day stint starts on Saturday!

It is not very often that Nick doesn't have to take anything. Tuesday is one of those days. On Wednesday he starts the GM-CSF injections that are once a day. This stuff boosts his immune system to get him ready for the 3f8 antibody once again.

He attended school and had an uneventful and normal day. How sweet is that!!

On the sporting front...Lawrence returned to action for the 8th grade basketball team and played pretty well for being out so long. He busted his toe on Halloween messing around in the house. It was his big toe so he couldn't just tape it together and rub dirt on it like I told him to do when he busted one of his other toes. He is fired up and hoping to break back in the lineup and get some clock during the playoffs.

Happy Birthday Carolyn!

Nick drew her a picture and wrote that she is the best mom ever. That made her day to say the least. The Grandparents came over and so did all of Nick's cousins. We ordered in the greatest Mexican food in the world....from the one and only.....Mecca....which is a little dive in Pittsburg, CA that I first went to when I was 14. (Yes, Pittsburg, CA is spelled correctly)

I learned the difference between Pittsburg, CA and Pittsburgh, PA in High School and speaking of high schools....check out the mighty De La Salle Spartans. They are number one in the nation in the USA Today Poll and are playing for the Northern California Championship at the Oakland Alameda County Coliseum!! Both of my brothers played football for the mighty Spartans and Mark scored a touchdown at the Coliseum in 1980 something.

http://www.usatoday.com/sports/preps/football/poll/2006-super25.htm

Nick should be in school most of this week. He is now finished with his first Accutane cycle and today only has to take Bactrum, which is an antibiotic that helps prevent pneumonia. On Wednesday, he starts the GM-CSF shots again to boost his immune system in preparation for the 3f8 next week.

Gobble Gobble Gobble

We had a very nice Thanksgiving and I think this picture tells it all.

Happy Thanksgiving

New York will be bustling tomorrow with the annual Macy's Thanksgiving Day Parade. Even though I really do love NY, I am happy to be home instead. Nick continues to do great at home and Turkey is one of his favorite meals so tomorrow should be a great day at Grandma's house.

We all have a lot to be thankful for this year and every year....so enjoy Thanksgiving Day and I will update the blog sometime over the weekend.

Still NED!!

We finally got the results of the bone marrow test that Nick did on the 10th....NED! We totally expected that but it is nice to get the confirmation. MSKCC can do these tests in about a day but they know which ones are likely to have disease and which ones are not....so they took their sweet time with Nick's. Of course I am not thrilled that it took 10 days for the test to come back but believe it or not, I didn't blast anybody. In fact, Dr. Kushner sent me a very genuine email asking how Nick is doing. I really appreciated getting that from him as we have had some pretty aggressive conversations but he is the greatest!

In fact, the staff at MSKCC is absolutely fantastic. I have told them this to their faces since I am sure none of them read the blog...but they really are amazing.

Fun Weekend

The highlight by far was golfing with Uncle Mark and his girls. We had a blast and then at the end Lawrence, Kenny, Nick, Noelle, and Katie had a putting contest while Mark and I solved the world's problems over a couple of beverages. The kids were trying to make 30' puts and were not coming very close. So, Mark says $50 if anybody makes it on this shot and wouldn't you know that Nick drained it.

Palm Trees Grow & Rents are Low!

My apologies to Neil Diamond for borrowing that title from a line in one of his songs.

It is really great to be home! Paying for hotels and taxi's gets old real quick. This morning I awoke to the sound of the lawn mowers cutting the grass. That used to annoy me but what a welcome sound it was. Take your pick...horns and sirens or a lawnmower.

Nick continues to do great and is really having a nice time at home.

Carolyn and I are going out to dinner with some friends and no kids for the first time since May. We are going to try someplace different....instead of Ruths Chris on the road we are going to Ruths Chris in Roseville. I'll have the New York as the Sirloin is 3000 miles away.

Next blog update...Monday. Have a great weekend everyone!

This & That

School, Ping Pong, Video Games, Friends, Bike Riding, Nerf Wars, are mostly what Nick is doing these days. What a difference from our nearly 6 months in NY. Nick feels good and is really coming back quickly to his old self. The drugs and treatments he went through were really tough and it will still take some time before he is all the way back but it is really nice to be heading in the right direction.

On the treatment front, he has completed 3 days of the Accutane regimen. Today, we need to do a blood test and fax it to NY to make sure everything is ok. Then, he still has 11 days to go for the first cycle. Next week, he has another blood test for HAMA. (Human Antimouse Antibody) This tests confirms or not that he can continue receiving 3f8. We have to draw the blood here and then overnight it to NY. We don't want him to produce HAMA until May or later so that he can receive at least 6 cycles of antibody.

Leanna is at school today but the boys are off until after Thanksgiving.

School Today

Nick didn't make it in to school yesterday but should make it in today for a half day. He continues to eat well and to be in good spirits.

Everyone else is busy with normal home activities. How nice!!

Nick Quotes

Nick is doing great and is eating and playing like his old self. He is getting ready for a partial day of school. Hopefully, he will be ready for full days of school, soon.

He had two memorable quotes during this last NY visit.

First: The top floor of our hotel was labeled PH in the elevator so he asked me what that meant and I said "Penthouse" When he called Carolyn and she asked him how he liked the hotel, he said it is great, etc. etc. but I wish we still had our dog because the hotel has a special "Pet House" on the top floor and he could have stayed here with us!

Second: Our flight on Saturday from Denver landed in Sacramento to the North which not usual so we made a big circle and had a great view of downtown Sacramento out of the window on our side. I explained to Nick what was going on and pointed out the buildings in Sacramento and Raley field etc. I said we don't get to see downtown Sacramento like that very often. He said, "Dad, I have question.....do we live uptown or downtown?"

He made us laugh with these and had me speechless.

Home for Awhile!!

We landed a little early and everything worked out fine with our trip home. Once here, we had a nice dinner and Nick played and played with his brothers until about 11pm. He slept for two hours from Denver to Sacramento so he was fired up to be home. It is great to see him with some energy. We are planning a quiet day today for unpacking and settling in.

Congrats to the BU Braves!! www.bubraves.com for winning the opener!! Somebody taught their point guard how to shoot and makes 3's....how bout that!!!

LGA-DIA-SMF

That is our plan for today. LaGuardia to Denver to Sacramento on United. I hope they are ready for Mr. Lynch squared as we got the upgrade again and will be in the big seats. When I first rode in big seats on UAL I used to dress up a little bit as it was something special. Today, Nick will be sporting his "Cancer Sucks" sweatshirt that 'bubble' gave him and I will be wearing a clean pair of sweat pants...but they are nice sweat pants!!

Anyway, we are happy to be heading home. Unfortunately, this time, we start the 6 month Accutane treatment. This goes 14 days on and 14 days off for 6 cycles. It has lots of potential side effects but the main one that MSKCC experiences with their patients is severe dry skin ... especially towards the end of each cycle. Oh joy!! We can hardly wait for this but we know that an Accutane regimen is standard for Neuroblastoma patients that achieve NED!!! Accutane is proven to kill MRD.....so bring it on!

Once home, Nick wants to see his brothers and Leanna and his friends and go in the hot tub before his skin starts drying out. I want to work from a real office and get back into my duties as Little League President!!! This is the busiest time for LL board members as we are preparing for the 2007 season! Thanks to all the board members who stepped up and took over my duties while I was away!! The big league pitchers and catchers report for spring training in 3 months, 4 days!!!

Between now and New Year's Day (Nicks Birthday) we are only scheduled in NY for one week. However, we are 99% sure we will be in NY for New Years as Nick starts treatment again on Jan 2. Maybe we will see the ball drop for real this year.

I will try to post the blog with short daily updates while at home.

Busy Day

We have to be at the PDH with the chickens this morning for the bone marrow procedure. After Nick recovers from that, he will receive the last dose of 3f8 for this cycle.

Then, home tomorrow!!

Our thoughts go out today to Debbie Hawk (Triantis) and her family. She is a long time family friend and mother of 3 who was murdered in June but never found. Carolyn, Leanna, Lawrence, and Kenny are attending the service today along with both sets of grandparents. Information on her case can be found by typing -- "debbie hawk" hanford -- into Google News.

More 3f8 Today and Tomorrow

Then, we fly home Saturday. The 3f8 and morphine does not wear off until the morning or we would jump on the 8:30pm JetBlue nonstop on Friday night. Nothing interesting happened yesterday....it was routine. The next treatments for Nick go like this:

Today - 3f8 and train me on the Accutane which starts next week.
Friday - 3f8 and bone marrow aspirates (stick him with a huge needle in four places while he is asleep) to extract bone marrow and do multiple special stains to test it for disease. This will determine that Nick is still NED as we expect.
Sat 11/11 - Sat 12/2 - Home! While home, start 14 day cycle of Accutane. Do a blood test for Hama and have the Dr. back over for Insuflon insertion on Wednesday 11/29 so we can start GM-CSF shots in preparation for the next 3f8 cycle.
Sun 12/3 - Back to NY to start 3f8 again on Monday 12/4.

Bottom line, the treatments are getting easier and we get 3 weeks at home. My guess is that by Thanksgiving, Nicks hair will be back and by Christmas he will need a haircut.

Two Days Down!

I am happy to report that there has not been any significant issues for Nick during this cycle of 3f8. The pain is being managed and the hives/reaction has been very mild so far.

One highlight is that Dr. Cheung (Inventor of 3f8) came by to say hello to Nick. His 3f8 antibody has saved, and is saving the lives of many children. He is like a celebrity when he comes out of the lab and visits patients in the PDH.

Nick With Dr. Cheung - Day 2, Second 3f8 Cycle

3f8 - Cycle Two

The first day of cycle two was uneventful and happened as expected!!

I gotta tell you that catching that 7:00am flight on Sunday was no fun at all. Leaving home after two short weeks was also difficult.

But, at the same time I can't help being positive. We are very fortunate that Nick is NED. We are very fortunate to be continuing the 3f8 antibody that is finding and destroying MRD. We are very fortunate for the great family and friends that continually help us.

Dr. Kushner came in this morning and the first question he got from me was "can we leave on Saturday?....he said YES! We then talked about the NY Marathon which he and Dr. Kramer both ran in, and finished, yesterday.....not bad!

We are staying at the Affinia Gardens Hotel which is walking distance to MSKCC. It is much nicer than the Shelbourne but our fantastic view of the Empire State Building is gone.

Making our way back!

We had a good day today and we are heading back to NY tomorrow morning to continue the treatments!! Nick wanted Q-Bole (Folsom) Mexican Food today and we all went there after Kenny's Mudhens Game. Kenny has had better games but the hens smoked the other guys. It was great!

You can't get salsa and fresh tortilla's like Q-Bole in NY!

I'll update the blog from Gothem City once we arrive.

Shot

Nick did the shot! Carolyn stuck him with it and he pushed in the medicine. It took forever but he was determined to get it done his way. Thanks again to The Doctor for being ready to make a house call and re-insert the Insuflon if necessary.

Other than that, it was a good day for Nick. The boys were all off school so they played, went to lunch and had friends over. My mom brought over homemade pasta and we all feasted. Nick ate but not as much as me. We should have traded plates! Uncle Ken brought over a roller coaster assembly kit and that kept the boys occupied for most of the afternoon.

We will make the most of tomorrow and then jump on the bankrupt airline called UAL and fly off to NY on Sunday. One good thing about UAL is that I am a million mile flyer and Nick and I will be referred to as Mr. Lynch as we climb into 2a and 2b. I don't mind being in first class but would rather be on JetBlue with DirectTV but they cancelled the 1:00pm non-stop and now the flight times are difficult for us.

Joe!

Congratulations to Joe Lynch and his family!!!! Carolyn and I were his Godparents as he was baptized tonight!!

Special thanks to Joe's parents and Fr. Arnold who made a house call because of Nick's schedule.

In other news....Thanks to the Doctor!!! Even though Nick said he put the insuflon in wrong....he didn't. Nick has developed some NY attitude and is not afraid to speak his mind.... He did the shot today in the insuflon that was flawlessly inserted and then ripped the insuflon out and said he will take the shot into the skin tomorrow.....I say no-way! Nick will probably prove me wrong.

Bottom line...we had a nice day today .... even though it rained hard here in California.

Anybody see what these guys did last night?.... http://www.bubraves.com/SportSelect.dbml?DB_OEM_ID=3400&KEY=&SPID=1498&SPSID=25965

November

It is hard to believe that it is November already!! Thanksgiving is around the corner. This year is like a blur for us. Nick's cancer treatments have consumed us and it is amazing that we first found this out on May 12th and here we are in November.

Today, Nick has to have his "insuflon" put in his leg so we can give him his daily GM-CSF shot. This shot boosts a certain type of white blood cell that helps his immune system attack the cancer cells that the 3f8 antibody will attach to next week. Fortunately, we have a doctor around the corner who is a Raider fan, A's fan, Star Pitcher of our World Championship softball team and since he is an Irishman he usually has a stocked fridge. Guess where we are going to get the insuflon inserted?

All is well here. We are enjoying our time at home and Nick is doing great.

Good luck to the Bradley Braves (www.bubraves.com) who start their season tonight and congratulations on their (Sweet 16) accomplishment of last year. Nick loves his Braves Gear. Thanks Jim!