Hama Test Today

Later today I will take Nick to get his blood drawn and then ship it to New York for HAMA testing. This will be the 9th time we have done this.

It is important because now we are at the point where a HAMA would be welcomed. We are told that now it is OK to HAMA but it is also OK if he has not reached a HAMA. We would all welcome a HAMA now since it would end the week of pain and morphine that is a 3f8 cycle. Again...HAMA means Human Anti Mouse Antibody and it means he will have built up a resistance to 3f8 and would therefore be finished with his treatment. Nick is very fortunate that he has made it this far with the treatments. Some kids HAMA too early and must stop the treatments before they have had time to work. Early HAMA is the key reason for needing to produce HU-3f8.

This drug is the reason for the Loneliest Road campaign. Please continue to track their progress here http://www.loneliestroad.org/ and here http://loneliestroad.blogspot.com/
and help them any way you can.

Five Fathers Update

I have been out of town on business since Sunday and am happy to be back home now. Nick is doing great and even played baseball today!! How bout that??

Here are some YouTube Video links and other information on the five fathers. Please keep them in your thoughts and help them in any way you can:

http://www.loneliestroad.org/
http://loneliestroad.blogspot.com/
http://www.youtube.com/watch?v=0ZS2bLP6ARw
http://www.youtube.com/watch?v=pKU4-9rrkf8
http://www.youtube.com/watch?v=6GOORenB0fU
http://www.youtube.com/watch?v=DmRvdxauyUg

This article from the Sacramento Union has Nick in it:

http://www.sacunion.com/SacUnionSept14,2007.pdf

Tomorrow's Plan

Here is the plan for meeting the 5 Fathers as they start off tomorrow on their bike ride across the country to raise money in the hopes of making HU 3f8 a reality.

7:00am - Riders and Organizers begin to arrive at Capitol building (Back Side)
8:30am - 10am - Good time for Nick Lynch group to arrive. Carolyn is going to arrive at approximately 8:30 and leave by 10:00 in order to maximize Nick's school day.
10:00am - 1:00pm - PR and Media interviews with the riders with a send off after the maximum media exposure has been received.

Track them at http://www.loneliestroad.org/

5 Fathers Update

I got a text about 10:00pm last night that the motor home and trailer and crew left Virginia and are heading west. They are driving straight through and are due to arrive in Sac Town on Sunday. I just spoke with Alec Oughton and he was pleased to report that they just hit Central Time so all is well.

Per Alec, they need a shop to install a towing package on a rented SUV that they plan to drive all the way back to DC. It will be towing a trailer with lights, etc. to protect the riders. They need an SUV and not a pickup because they will have gear and extra people to carry.

Does anyone know of:

A - A shop that will install a tow package on Sunday?
B - A shop that will rent a tow-ready SUV to drive one way to our Nations Capitol?

Carolyn, Nick and I are heading for the airport now and we are looking forward to getting back to Granite Bay later tonight.

Progress

Nick completed his 8th cycle of 3f8!! WooHoo....All is well.

On the 5 fathers fight to raise money for a humanized version of 3f8 called HU 3f8 much progress has been made. I have spoken to most of the dads and Nick Lynch blog fans have stepped up to make many things a reality. So far....

• A good sized group is forming to see the riders off at the Capitol on Monday
• An article is coming out in the Sacramento Union
• The Bee has been contacted
• One of the Dads...Kevin Sims will be on the Jim Kozimor show tonight. http://www.khtkam.com/
• Other media and celebrity's have been contacted
• Newspapers across the country are picking up on the story

http://www.wtov9.com/news/14069126/detail.html

We need to make this happen. A few million bucks will improve a "sure thing" in the fight against Neuroblastoma. 3f8 works!! HU 3f8 will work better!! All the questions are answered by clicking "What is 3f8" on http://www.loneliestroad.org/

5 Fathers Update

Details... www.loneliestroad.org

I have now spoken to most of the riders and the event organizer and the main publicist. Bottom line, anything Nick Lynch blog fans can do in Sacramento is greatly appreciated. So far, here is what is happening in Sac Town:

• Sac Union will have a front page story - Thanks Hub and Dave G!
• Local Media will be contacted - Thanks Bill G.
• I will contact a friend at sports 1140

If anyone knows how to get to Tom Sullivan, Kings Players (I know that Mike Bibby visited a child with this disease at Sutter) and of course the Governator, that would be awesome. The Governator sent Nick an autographed picture last year.
---------------------------------
Update on Nick---all is well-----last day of 3f8!!! for this cycle.

State Capitol on Monday

Wednesday was a good day for Nick. 3f8 was as 'normal' as it ever has been. No hives, pain but not severe pain and a decent night watching games and Smokey & The Bandit for the 50th time.

The bike ride starts from the Capitol on Monday. I am told 9:00am but will post exact details here later today as I am supposed to meet with one of the dads and one of the organizers. Carolyn is planning on bringing Nick down there to see them off and we would really like a large group to show up and wish them well. Unfortunately, I am going to be back here on the East Coast for a business trip.

Bike Ride

It is about 9:30 on Wednesday morning and Nick is still sleeping off the 3f8 treatment from yesterday. When he wakes up, he has to do a double dose of the dreaded GM-CSF shot and then head back to MSKCC for another treatment.

Here is another newspaper article regarding the bike ride for Humanized 3f8. Has this been in the Bee or on any local TV Stations?? Are there any Nick Lynch blog fans out there who want to take a lead in publicizing this event in Sacramento? At minimum, a group should see these guys off on Monday but unfortunately I am back here on business.

http://fredericksburg.com/News/FLS/2007/082007/08252007/310602

5 Fathers

This is an excellent cause and the money will go towards a humanized version of the 3f8 antibody. We are told that Dr. Cheung has already invented the antibody but he needs about $3 million in order to produce it and make it available to the kids. The mouse version of 3f8 has saved many kids.....and the belief is that this humanized version can save even more.

http://www.mlive.com/entertainment/kzgazette/hometownsouth/index.ssf?/base/entertainment-0/1188910204119840.xml&coll=7

It is a bike ride that starts in Sacramento and goes all the way to Washington DC.

http://www.loneliestroad.org/

New York

Nick and I arrived in New York late last night for yet another cycle of the 3f8 antibody. This week is a little different since we start on Tuesday and don't have to make up Monday. So, 4 days instead of 5. Hopefully, that will make it a little easier.


Today was a total hassle at the PDH. The place was mobbed and nobody wanted to be there including the Doctors and Nurses. We didn't start the treatment until 4:00pm because the pharmacy was backed up and his meds didn't come out until then.....frustrating!


Anyway, one day down and three to go.