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Off to New Mexico/Summer So Far/A Cancer Called Neuroblastoma
By Margot | July 5, 2010
Neil and Andy on the way into the Padres Game
Charlie hiking the ball at Luke’s flag football b-day party (one day of the summer he wasn’t in his Laker’s jersey)
Andy running the ball at Luke’s b-day party
Joe’s tenth birthday at Laser Tag
boys in the hot tub with Grant
Sam running the ball in 2008 because I can’t post photos without him
Charlie and Andy and I are off to New Mexico for a week today. We are looking forward to camping and fishing and maybe some river rafting. Pics above are a few from summer so far, playdates and swimming and a couple of Padre games birthday parties, soccer world cup, barbeques and fireworks.  A lot of firsts without Sam, Mother’s Day,  Father’s Day, my birthday, 4th of July, packing for a trip. Joe turned ten last week and that was hard. Neil went to the Laser Tag party with Andy and he and big Joe played against all the boys. He was much braver than I was because I couldn’t go. I took Charlie to Toy Story instead.   Hard to really put into words all the things we miss about Sam and what we miss about him together and individually. Doesn’t really do him justice to write a laundry list but little things and big things every day.  Andy and Charlie are doing well. Lots of basketball. Charlie is still only wearing a Lakers jersey every day and only basketball shoes. I went to the Library to sign the kids up for the summer reading program and the book Charlie picks out while I’m trying to sell some of the classic story books? “The Golden State Warriors” because, as he noticed, and I never would have, it has Derek Fisher from the Lakers is one of the guys on the cover. He used to play for the Warriors I guess. So now we now lots of facts about The Golden State Warriors and their entire history. Isn’t that useful?  Andy is into The Discover Channel lately and great white sharks. He watches this show called River Monsters in which this hokey british guy is always trying to catch these deadly gigantic fish in some river in Africa or South America. Andy loves it and can now tell you all sorts of facts about the goliath tiger fish and the size of its teeth. He’s going to miss his first basketball game in New Mexcio but then will have a full summer season when we get back.  We are taking a counseling break for a while as I think we were probably over-counseling Andy. He’s doing pretty well but cried some yesterday when he thought about how much Sam would have loved the 4th of July.
CNN today has a video on their home page today about a little boy named William Bunn who died last week and was buried with full police honors because he became an honorary officer in his town and was an inspiration to the entire force. What struck me about the story though was when the announcer said, “William had a cancer called neuroblastoma.” Nobody ever says “a cancer called Leukemia” or a cancer “called breast cancer” or a cancer called “prostate cancer.”  Maybe when news announcers can just say “he had neuroblastoma” and people will know what they are talking about we will get closer to a cure for all the kids fighting this monster disease.  I’m adding a link to a story about DFMO, one of Dr. Sholler’s current trials. The man in the story Andre Bachmann refers to of course is Neil:
http://www.staradvertiser.com/news/hawaiinews/20100626_old_drug_has_new_promise_to_fight_cancer.html
I’ll post pics from our trip when we return. We get back on the 12th, Â the day before Sam’s 10th birthday.
Margot
Topics: Progress Reports | 10 Comments »
July 5th, 2010 at 11:15 pm
So excited you are getting away for a little bit- It will do you good. Thought about you guys yesterday with all the craziness at Kate Sessions park. I am sure Sam watched the fireworks and had a good view. Loving thoughts- Angela (Madison’s Mom)
July 5th, 2010 at 11:26 pm
JUst read the article- WOW is all I can say
July 6th, 2010 at 3:44 am
good to hear from you and Neil. Still thinking of you so often….
was cleaning Joey’s room and came across a photo that is framed of Sam and our kids…. he was about one. All I could think of was, “wow, what an adorable little boy, and then, geez, I cannot believe
he is not here with you any longer”….
Have a wonderful trip !
Love, Colleen
July 6th, 2010 at 3:41 pm
This promising advancement, and others, all tied together by these brave angels and warriors and their amazing parents. Sam continues to make a difference in so many ways every day. Mack hugged Charlie, and Andy hugged Grant all through the fireworks the other night – and they had fun – but we all felt Sam’s absence. Sam is missed, for the big things and the little, all the time. You are all doing a heroic job of “staying in the game and leaving it all on the field” just as Sam has taught us. Have a great time with Marty and Stephanie in New Mexico. Love, Lisa
July 6th, 2010 at 5:51 pm
Soldier on…
One foot in front of the other…
I am so proud of the living that Sam left momentarily…Andy picking up the pieces and moving forward…in Andy’s world a football is the piece, the piece of life. Charlie…hiking the football and moving forward..Margot and Neil…picking up the football and moving forward…
Sam was so proud of his father…he witnessed Redman going head to head with the best minds in medicine, arguing for more, for different, for something other than hopelessness…Neil called me from this meeting two years ago and told me of his meeting with this MD from Hawaii…and he told me a line that is not in this story…the line was Neil’s question to this MD..”what if I dont have that kind of time…to wait for this..”
Someday Neuroblastoma will be remembered as a cancer that once killed most everyone it touched…in the footnotes will be a listing for the energy that Sam and Margot and Redman gave to the fight…the solution will be something Redman touched but could not grab…
For now, get knocked down, get back up…Sam’s motto of life…Soldier on with the fallen until victory…
The best minds in medicine are closing in on the dna of all cancers…thanks to and because of herculean efforts of kids like Alex and Sam and Ryan and parents like Redman and Margo..
July 6th, 2010 at 10:49 pm
great article! –
I had to do a double take on the first picture – then even had to read your caption twice. ‘Andy walking with Neil’ resembled Sam so much from a distance. Maybe my eyes are playing tricks on me because I miss him, maybe Andy has alot of Sam in him. I think we all do. 🙂
Anyway – cant wait to see you guys again!
July 7th, 2010 at 4:39 am
just read the article…….. another “because of Sam” story…….
I think Sam is smiling in heaven because he is so proud of his
Dad !!
Love to you all,
Colleen
July 7th, 2010 at 9:04 am
I’ll never forget the moment in my kitchen when you guys were here last .. ( care of make a wish – thank you make a wish). My brother was over and Neil asked him what treatment he was receiving for his ‘rare’ astrocytoma. Paul just replied ‘the normal stuff’. Neil proceeded to tell him about things he should be doing and things he should be thinking about. My brother wasn’t ever the one to question the supposed ‘experts’ and continued along with ‘the normal stuff’. A couple of years later Paul asked me to ask Neil for some advice because he knew what an amazing job he was doing for Samo. Neil you really made an impact on Paul with your enquiring mind , challenging the norm and Sam was an inspiration to him for so many reasons but also because of his willingness to ‘have a go’ at dad’s regimens. It sucks ridiculously that it takes loss to get good things but Neil you should be so proud of the good that has come and WILL come of your questions. I just know that Sam and Paul are both still egging you on ….Love you guys heaps and miss you all soooo much. By the way…Finnbar wants to be an extraordinary vet..he just told me to tell you. have a great time with grandpa and stevie. love kaz
July 7th, 2010 at 5:38 pm
Bachmann said. “Because of his son, all of this happened, all of these people came together. … Other kids hopefully will profit from that.”
I think that line sums it all up. Because of brave Sam & unrelenting Neil, the world is closer to a cure- here’s praying that it will be found soon thanks to them.
July 8th, 2010 at 12:31 am
Dear Neil, Just got through visiting & having your two younger sons at my house and then taking them up to Marty and Stevies’ They are amazing little boys, so tireless and full of energy,so loving’ and ball playing! They are so much of so much of their father & mother. Of course, we all missed Sam; because it was a first time back to New mexico without him!
Neil, I am so proud of you for always pushing the envelope and pressing doctors and researchers to search harder and dig deeper for a cure to neuroblastoma! I think they could of mentioned your name in the article because it was because of your persistence and persuasion that DR.Scholler got involved with these trials !I so hope it works! and it will be “Because of Sam!” Your fathers day entry just blew me away and I couldn’t respond to such a heartbreaking entry; but, I am so proud of you being “that man from San Diego that made a difference!I am so glad you are getting some tribute in this latest article. I am sending warm wishes for Sam’s would be 10th birthday to be probably held by a picnic in Kate Sessions park playing ball and eating tacos!
Much Love, Sara “Grandma Sara”