NED!!!

We are extremely happy to post again that Nick is NED!!!!!!!!!!!

No Evidence of Disease!!!!!!!

We stressed this one like we stress them all but for some reason this one felt different. Maybe it is because this is about the time it has come back for other kids we know or maybe just because we are paranoid and scared to death of it coming back.....but IT DIDN'T!!!

So, the fundraiser and NED party on February 27th is on and we are ready to get this party started!!!

3 Down, 3 to Go

I just heard that Nick's CT, MRI, and MIBG scan are NED!!

Outstanding!!! We still have to wait for blood, urine and bone marrow results and hopefully we will get excellent news on Friday.

Perfect Weather

I understand it is pouring buckets in Northern California but NY is clear, mildly cold and dry for now. It is perfect walking weather but you need a good coat. I don't use gloves or a hat but Nick loves his new hat that we got him down by Wall Street from a store that only sells hats...only in NY! He was styling as we walked across the Brooklyn Bridge and had dinner at Peter Luger's. I have been to Peter Luger's but it was my first time walking across the bridge. Food is so so....Wolfgang's is better!

Today, we did the CT, MRI and MIBG Injection. Tomorrow is the MIBG Scan and the Bone Marrow Surgery. Mostly the same as usual and of course so far we have no results. I will ping Dr. K tomorrow from the airport and ask him if anything has come back. It is a good sign that we have not heard from them yet. I am told that if the tests light up, they contact you immediately. Not assuming anything but that is what I have been told.

Hopefully, tomorrow will go as scheduled and then we will hit Wolfgang's on the way out for lunch and we will be at the airport for our flight home to SFO. The plane is supposed to leave at 5:00 but with the weather in SFO and the extra security here I'm guessing it will be late...shocker on that one!!!

Will update tomorrow once I have more information.

Happy New Year

It has been a long time between updates but that is because all has been going great with Nick!! He is playing basketball and baseball and spends just about every non-school moment with either those two sports or golfing, roller blading or bike riding. We are very pleased with his progress right now.

We arrived in NY late last night for the 90 day testing process. This time we have to stay an extra day due to a scheduling issue with the late effects doctor and the MLK holiday which means that one of the Nuclear Medicine contrasts cannot ship until Tuesday.

So, today we meet with the late effects doctor and hopefully with the team so that we can have an off day tomorrow and then go straight to the CT scan on Wednesday morning.

Will try to update each day from here as we progress through the scans.