Nick returned from beach week with no apparent new tattoos or piercings.  He didn't seem too exhausted and he didn't appear sunburned.  I guess that is the basic checklist!  Today he got to meet his new nephew, Jackson Nicholas Pollard.  My daughter gave birth on friday morning to this precious new baby who  weighed in at 8lb 4 oz.  She came home 24 hours later and Nick got home from the beach and wanted to go meet his "name sake" right away. 

He packed for his college orientation, he packed for his camp job and then promptly left for a concert at Nissan Pavillion... 311, one of his favorite bands... influenced by older brother I'm sure who has always loved this band.  I envisioned a nice family dinner with lots of talk time to reconnect and catch up before he leaves again tomorrow.  I guess I need to do a reality check on myself... Here would be a descriptor in an ad...

19 year old male... been through hell for 4 years battling rare cancer that he was the wrong age to get.
Desperately seeking a normal life with catch up time for the years he has missed.  Looking for any and all free time away from reminders that I still may have cancer lingering in my body, including family dinners where the conversation would surely move towards what is on the horizon on July 6-8. 

So I pouted for about a half an hour and then made dinner for Jeff and Karen (other son and girlfriend) and Jim.  I sent dinner to my daughter and family as well. 

Personally I am starting to get the creeping butterflies crawling through my stomach over our visit to CHOP on July 6th.  This is the all important post Ultratrace MIBG therapy scan.  They warned us to not expect NED... but they are HOPING for significant improvement.  I will be completely happy with significant improvement.  I will be very sad if nothing has changed or God forbid progression.  60 days is a long time in between treatments but is what this protocol called for. The normal human brain does a good job of tricking you into normal.  You would never know Nick is battling and you would never know we are fretting over results to look at us from the outside.  But let me tell you the silent feeling of panic is getting harder to contain.  The what ifs are popping into my head.  Nick is completely believing he will be at camp most of the rest of the summer and "life interrupted" will be at a minimum.  We must believe the same.... But, while he is out at concerts, beach trips, college orientations and camp... mom and dad are home with LOTS of time on our hands to worry.  I just have to believe we were led to this treatment for a reason and I need to expect good results.  It's kind of like guessing the sex of a baby though... at this point the treatment has done what it will do... it is what it is.... nothing I can do to change what it is in either direction.. Only God can perform the supernatural, only God knows if Nick will get the chance to move on to college without more terrible, invasive treatment.  We will do what we have to do.. but we hope it is a mild treatment that enables him to continue his "normal" life most of the time.

Meantime... I keep myself busy "coaching" other new families.  Please keep the new Northern Va. family in your prayers.  Their insurance didn't cover a consult with Sloan and they are desperately seeking funds to go for a consult with Dr. Kushner.  Meantime they have started at Inova Fairfax hospital.... where we started. http://www.caringbridge.org/visit/racheldandrea.

Also I have a new friend in California who has reached out to me as her almost 15 year old Tyler starts his neuroblastoma journey. Don't have her website yet, but we have talked on the phone for a long time and I feel like I know her heart as if it was my own.

Also, our local wonderful Band of Parents family the Lindbergs just found out that Evan has relapsed a second time.. in the dura space of the skull.  He was clean and started the ABT751 trial at CHOP for NED kids and unfortunately, it didn't work.  They are awaiting a plan.

Also, our Band of Parents president has just endured chemo for Liam's second relapse. This is the famous cookie project family and they are battling again.

So you see, it is never over in relapse.  You just learn to dance in the spaces between treatment and pray to God that there is another page to turn and that another treatment is there.  We are there and we are anxiously waiting to turn a new page.