Alisal Dude Ranch

Be Careful What You Wish For!

A blog fan asked for a few pictures with me in them....I'm thinking I shouldn't take requests but here you go anyway....These are from our great weekend in Bermuda.

Nick is doing great and we are looking forward to the rest of the summer!

Fishing in Bermuda

We had a great time Reef Fishing in Bermuda.

NED! NED! NED

We expected these results but are so pleased to get them!! Three more months of living life every day until the next nerve wracking testing process. Way to go Nick!

A Sand Sandwich in Bermuda!! Nice hat Nick! .....Lawrence???

Walking to the beach.

Tuesday Night at The Stadium.

HAPPY 40th Uncle Mike Broz!!!!!!!

All Tests Complete!

We finally finished up all the tests yesterday afternoon. Nick is doing great and resumed right back to his crazy self after the IV line was removed. He was playing and fighting with his brothers ..... what more could we want?

Thankfully, we are staying at 64th between 2nd & 3rd and not at the Shelbourne at 37th and Lex. The street blew up right in our old stomping grounds. In fact, I think it was right in front of the Chinese place that we like over there. The news camera's showed the bagel shop that I went to just about every day and the cleaners that we used, etc. I hope none of those folks were the ones that got hurt. One thing that is really weird about NY is that even though we are only walking distance away, it could have happened in Siberia as far as New Yorkers in this area were concerned. They take the news like...yea, I heard....next!! Just guessing but I think Lexington will be closed for a few days and that means huge traffic jams. The traffic is congested anyway and with a major avenue closed down it is going to be something else. We are on the other side of it so hopefully it won't affect us much. We are flying out this afternoon but we are not coming home yet as we have a little weekend get-away planned.

Thanks to all of you Nick Lynch blog fans out there! I appreciate the emails and will update again when I hear the test results. I will also update with photos if the fish are biting for Nick this weekend.

HAPPY BIRTHDAY DAD!!!

Mid Day Update

It is Wednesday about noon in NYC and we are still waiting to start the bone marrow surgical procedure. Things happen at their own pace around here sometimes. We are looking forward to getting this last test over with and of course we are hoping for great results!

On the way to the hospital this am it was pouring rain....and I mean pouring. I was pushing Nick in the wheel chair and there was no way to stay dry even with an umbrella. Of course I can't hold an umbrella and push the chair at the same time so we just covered up Nick and ran for it. It was really no big deal because it was a warm rain and a little water was not going to hurt us. But, there were two construction workers sharing an umbrella and when they saw us the guy holding the umbrella took it off of him and his buddy and held it over Nick. Pretty cool from a total stranger who didn't speak a word of English. New Yorkers continue to go out of their way to help us. I wish this stuff made the news a little more often.

Testing Begins

Monday involved going to the PDH for a new IV line, turning in the urine bucket, and getting a CT Scan. The CT scan means that Nick has to drink some nasty contrast stuff and they also inject him with more of it through his IV. All of that happened without a hitch and the CT was actually done on schedule and on time.

Today is pretty easy, all we have to do is get the injection for the MIBG scan. Then, on Wednesday we have to be there really early to do the MIBG scan and the bone marrow surgery.

We could have the results of the scans tomorrow and then the bone marrow takes a few days.

3f8 - Friday - DONE!

We are finished with this cycle of 3f8 and will do testing next week.

Nick did great on Friday and is happy to have it over with until next time. He felt good enough to go to our old hotel, the Shelbourne-Murray Hill so we could say hello to some of the staff. About 5 of them remembered us and they could not believe Nick. A bellman who once played Wiffle Ball with Nick in the lobby was almost in tears seeing how good Nick looked and he couldn't stop high fiving him and hugging him. It was really cool to go there and see the people. Carolyn and I went to the Rare View at the top of the hotel for a pre-dinner adult beverage and then we went for Chinese food as that was Nick's choice. Thankfully, he did not pick China Fun which is the worst restaurant in the entire free universe. The Chinese place near the Shelbourne is actually pretty good.

Tonight, Kenny gets to pick the restaurant. There is no telling where we will end up. It could be pizza, or a deli that serves an open faced turkey sandwich. I'm wishing for Wolfgangs on Park Avenue but we will see. Leanna wants to see downtown and the Wall Street area so we are going to take the subway down there and walk around. We will see the Raging Bull and hope that the current bull run on Wall Street continues.

3f8 Thursday

It was easier on Thursday as Nick had less pain than Mon-Wed and he finished the dreaded GM-CSF shot a little earlier. The best part of the day was late at night when both Nick and Kenny got second winds and so we took off in search of the pedal cabs. It was nearly midnight and we were touring all around Times Square and MidTown. While riding around, all of sudden my cell phone started going off like crazy with calls and pictures.....that is because Lakeside Little League won the District 54 Championship in the 9/10 division....Way to go Lakeside!!!

3f8 Wednesday

We have had better days. Nick had a restless night sleeping and had continual nagging pain all morning. He eventually got it together and had a decent breakfast at the Silver Star Diner. Then, back to the PDH to start all over again. Two more days!! This stuff gets old quick.

We asked Dr. Kramer if the immune system news that we got yesterday would mean that he could HAMA sooner and she said no. They don't know when or if he will HAMA but they know it is possible so they test for it after each 3f8 cycle. HAMA would mean that he has built up a resistence to the 3f8 and they would stop the treatment. The plan right now is to continue 3f8 until either Nick develops a HAMA or two years pass. This means that he could get it about 6 or 7 more times.

We are looking forward to Leanna and Kenny arriving this morning.

3F8 Tuesday

Our day started with great news that Nick's immune system is no longer compromised from all the chemo that he had. This means we can discontinue the Bactrum Antibiotic that he has been taking for over a year. Unfortunately, it also means that we must re-do all of his childhood immunization shots....he is going to hate that. They need to do some blood tests related to the immunization shots this week and then we will start the process next time we come here which should be in September.

The 3f8 went as expected.

Wednesday starts the double dose of the GM-CSF shot which Nick hates.

Just in case you missed it....The American League won the all-star game for the 10th straight time!! They even toyed with the NL in the 9th to make em think they had a chance...They didn't! The Fall Classic will open once again in the home of the American League Champion.

3f8 Monday

Very Hot in New York!!

We arrived in New York right on time Sunday night. It was nice to be on time for a change because the airlines always struggle during the summer months and it was nice to have one arrive when it was supposed to.

Today was a typical 3f8 Monday. Everything worked out about normal.....but it took all day.

None of us wanted to come back here but once we arrived, it was nice to see the spectacular MSKCC staff again and to reacquaint with some of the families that we have met along the way.

There have been many interesting articles and studies regarding Neuroblastoma in the past couple of months. MSKCC has a new antibody called 8h9, CHOP in Philly is making great strides, and someone donated $150m to UCSF....and I swear it wasn't me! Also, one family is running this ad in dozens of publications over the coming weeks to bring awareness to NB.

http://www.teambrent.com/National_NB_ad.pdf

I really believe that efforts like this can lead to a cure or at a minimum improve the chances of surviving this miserable beast.

New York

After a two month stint at home we are off for New York City again to continue the 3f8 Antibody and to do the 3 month full testing to make sure Nick is still NED. The treatments start tomorrow and we won't be finished until Wednesday the 18th. Both the antibody and the tests are very hard on Nick and on us so we are looking forward to getting them behind us.

Nick is doing absolutely fantastic and seems to be good spirited about our return to NY.