« Project Management | Home | Bonescan Today »
Doing ok!
By Margot | February 28, 2010
Quick update and we apologize for the lack of information. Sam completed radiation to the liver Wed and to the skull on Friday. Liver numbers are dropping. For the other NB parents, AST/ALT, Bili are basically normal – GGT is down by half but still elevated. It’s a good tumor marker so we hope to see the trend continue downward.
Sam is on Sorafenib and with the radiation to the liver, has persistent nausea that we hope will clear as the days march by. We trying to get approval for Tarceva as that and Sorafenib seem to be implicated in his disease. He’s still on a pain pump for bone pain – dilaudid. He is hitting it less frequently and seems to be improving but we want the Old Sam back – running, playing soccer, and being back in school so we need to figure out what to do next. Strontium-89 is FDA approved for the use of bone mets and our radiation oncologist suggested that so we’ll see – it hits platelets but not as persistently as MIBG so we may avail ourselves of this. We’re trying to get compassionate use of a number of therapies as well – it’s time-consuming but very worthwhile. We have been fortunate to have some great support from Childrens SD (Drs. Willert and Murphy and the incredible Joanne and the rest of the nurses). There are some wonderful doctors heading some pharma companies that are helping as well along with some other parents of cancer kids who are helping — it takes a village and our village is becoming a city 🙂
Andy & Charlie are having fun – school, basketball, the usual stuff. Uncle Paul is in from Australia as is Cousin Marty who is the epitome of “cool” – the boys love him (he’s wonderfully sweet) and brings a smile to Sam’s face. Matt & Roscoe are here practically every day —- couldn’t do 1/2 the things we do without Matt’s help and without help from Elizabeth and Maureen and Colleen.
This is a “Neil” update so it’s quick and probably not as fulfilling as Margot’s but what the heck 🙂 Our gameplan is to get Sam off pain medication somehow, keep the disease going backward, and then get him eligible for what seem to be some very promising clinical trials.
AND have fun every, every day. Margot and I are blessed with 3 beautiful boys and we know how lucky we are. Please hug your loved ones every day and keep Sam and our family in your thoughts and prayers (and we promise to update more frequently).
Neil
Topics: Progress Reports | 13 Comments »
February 28th, 2010 at 2:24 am
Soooo does my heart good to hear that he is making progress…..you guys are always with me…always…..we will get through this…..I am in your village, if only in prayer……
keep fighting sweet boy!!!!!
rhonda dudley
February 28th, 2010 at 2:35 am
Thank you, God, the son is beginning to shine. So happy to get the latest, know you are very busy with Paul, Marty2 and Marty l.
So many people across this country – and other places – are praying so hard for our boy and his wonderful parents and brothers. We’re gonna win. lots of love and prayer, grandma joan
February 28th, 2010 at 2:52 am
Thats the spirit…Fight..Fight…
For as long as I can remember Redman you have fought..to be the valedictorian at school, wrestling, tops at Notre Dame..and fighting this fucking NB war non-stop for more than 5 years…you (not the Drs, not the protocols, not the establishment, you) put yourself plumb between Sam and NB five years ago and Sam is alive because you have never faltered or questioned your resolve…
Sam The Warrior!
February 28th, 2010 at 2:58 am
We’re praying and thinking of you guys all the time out here in MD. Keep on charging!
February 28th, 2010 at 3:31 am
Keep truckin- it is going in the right direction. Lots of prayers coming your way… Angela (Madison’s Mom)
February 28th, 2010 at 9:05 am
Good to hear from you Neil. Think about you, Margot and the boys daily. Still working at raising the $$$ for those clinical trials but still here if there is anything i can help you with. your determinaton continues to drive me.
February 28th, 2010 at 5:09 pm
So thrilled to hear some good news. My thoughts and prayers are with you every day.
February 28th, 2010 at 5:52 pm
Praying every day. Thanks for taking the time to update everyone- I check in daily and it makes my day to hear that the numbers are trending downwards. You have more than a village rooting for Sam. Keep fighting, we are with you.
February 28th, 2010 at 7:11 pm
We like to hear the numbers are going in the right direction! Continued prayers from the Kuhn Clan and I am sure you’re having fun with the Aussie relatives!
Lots of hugs from all of us,
Colleen
March 1st, 2010 at 12:57 am
So glad to read the update and know that things are moving in the right direction. Count us as part of your team, your village, your city, your hope – just as we know you are part of ours. We like the gameplan and have a similar one ourselves.
Keep fighting, keep hoping, keep believing.
Love, John and Sarah
March 2nd, 2010 at 3:42 pm
Hey Guys,
As always praying here in Wa….. Happy to hear that there are some improvements. Don’t worry about the updates enjoy hospital free moments we can wait 🙂
Luv
Abra
March 10th, 2010 at 2:51 am
HUTCH SAYS IT ALL…………
March 10th, 2010 at 2:53 am
HUTCH SAYS IT ALL