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Radiate
By Margot | February 10, 2010
The title of today’s post has two meanings. Erik Ludwinski passed away last night. His mother Donna has been our friend and support since we started this journey and Erik has been an inspiration and an example to nearly every NB family. Sam and I were able to have dinner ( a 10pm dinner)  with Erik and Donna in Philadelphia.  Erik was starting MIBG therapy just as Sam was finishing it up. Sam and Erik were able to talk a little bit about what Erik could expect from MIBG. Both Erik and Donna radiated kindness and their love and friendship for each other was so evident. Please stop by Erik’s website today and leave a message for his amazing family: http://www.caringbridge.org/visit/erikludwinski
The second meaning of course pertains to Sam. We started radiation today on his liver and his skull. We did the mapping on Friday and he did well with the liver but hated the mask over his face for his skull. He was very nervous to have to put it on today and we gave him some ativan beforehand to calm him down. It turned out that today was the opposite. It was painful for him to keep his hands over his head so long for the liver radiation and it seemed like forever sitting in the waiting room crying while he was getting that done.  The mask went better though. The awesome tech did not put it on too tightly and I think since he could put his hands down he was much more comfortable. Tomorrow and the rest of the ten treatments should go much faster but I’ll make sure he has more pain medication on board beforehand. Dr. Murphy (the radiology doctor) is very confident that this should work for Sam and warned Neil that we should be hydrating quite a bit for tumor lysis (that means tumor death, wohoo!). We are radiating the liver, a spot on the skull and a tumor in the cavernous sinus area.  Sam has been having some blurred vision in his right eye and is sensitive to the light again. Hoping the radiation works as well as it did on his knees because he is having no knee pain since we radiated there. Â
We’ve had a pretty quiet week. Lots of hospital time getting platelets and IV vitamin C. We had velcade on Tuesday of last week and will have another dose on Monday. Friday’s platelets were 5, Monday’s were eight. today’s were 16). We went to Meredith and Ron’s for Superbowl and Sam mostly sat on my or Neil’s lap on the couch and watched the game.  The other two boys had a good time with all of the kids. Charlie and Andy were for the Colts until New Orleans won and then Charlie said “I was just tricking you. Yay Saints!” and Andy said, “I didn’t really care who won.”   I was glad New Orleans won ( was thinking of you, New Orleans clan).  Sam and I have read and read and read. We took a break from Harry Potter for a while and read Percy Jackson and The Lightning Thief.  We finished it on Monday and had a lot of kids in the clinic tuned in to what was happening in the story.  It’s pretty exciting story and we are prepped for the movie. Andy and I are reading it too but he is a bit behind because I haven’t read to him for six hours at a time.  Yesterday we didn’t have the hospital and Charlie went to school and then had a playdate with Hank. Neil and I just hung out with Sam all day playing Scrabble and Chess and watching the food channel. It was a nice day. Sam is getting so good at Scrabble, he beats me by figuring how to get to triple word score every time.  He’s been up and alert and mostly happy unless he’s in a drug induced bad mood. Otherwise though he has been so sweet to the boys and Charlie always brings a smile to his face first thing in the morning. He still calls Charlie “baby dude” and he always wants to know if Andy is home yet on the way home from the hospital. Monday after the hospital we got out for a bit and went to look at the seals on the beach in La Jolla. It was a glorious day with big white caps coming in and a brand new baby seal on the beach born ten minutes before we got there. The boys were enthralled with the little guy and mother. I’ll post pictures when I get home to the camera. After the beach we went out for pasta and then a quick twenty-five minutes of video games at Dave and Busters.  Sam won all of the racing games. The virtual bike is really a better bike for him to ride ;-). The games brought a big smile to his face and brought out his competitive side.
Andy and Charlie are doing ok. Charlie is loving school now and is taking swimming lessons with Jett at a new place which he loves. He looks forward to swimming all week and he’s progressing much better than he did at the other place.  Andy is doing well at school and basketball though he is getting tired of being shuttled off I think. He let Neil and I have it last night after we deferred to Sam for something. Ugh. I talked to him before bed and he perked up some. Dropping him off at school this morning he was back to his happy self he and I raced for the school gates before they closed them and he had to get a late pass. We made it by the skin of our teeth and gave each other a high five. I’ve been really bad about getting him to school late lately. Neil picked him up from his half day today and got to spend some special time with him.
Thanks for checking in on Sam. Thanks for all of the help and prayers and good thoughts.  I know I always say this but I will try to post more often. I have been in a bit of a dark tunnel mentally and I’m working on finding that light.
Margot
Topics: Progress Reports | 11 Comments »
February 10th, 2010 at 8:22 pm
Think of you guys so often from across the country and appreciate the updates so much. I am sending many many prayers your way that you get good news soon that gets you out of the dark tunnel and into the light. Hope the radiation goes smoothly and does its work! Much much love, shirley
February 10th, 2010 at 9:35 pm
We look forward to Mack playing “hooky” and hangin’ out with Sam tomorrow morning. Does chocolate milk or cocoa qualify in the hydration department? ( ‘cuz we’re planning on bringing some.) Keep up the strength, Margot. Way too much to handle, but you’re doing it all with grace anyway. And Sam seems to be following your lead. All your boys know they’re loved by so many – most of all by you.
February 10th, 2010 at 10:26 pm
Warrior Sam…this little 50lbdr fights like a Navy Seal…
Tough as nails and great at Scrabble..a Chess Master…
Doesnt like to lose and he will fight on..
All it takes is a little crack in the black darkness and you will have light Marg’s…keep thinking great things…
Redman…no bending at the knee, throw off orthodox advice, go for broke..
I love you all.
February 10th, 2010 at 11:28 pm
Sending lots of good thoughts your way. I know the light will be shining soon and you’ll have to put on sunglasses!
February 11th, 2010 at 4:53 am
Whalen’s praying in Howell for Sam!
February 11th, 2010 at 7:00 pm
It was so great to see you guys the other day. It truly made my day. Yesterday Natalie told me that she was worried that that Sam wouldn’t get all the Valentines from the class party… I had to explain that people are ‘chomping at the bit’ to get over to your house to play and hang out with Sam… that someone would bring them over. 😉 Tell Sam we saw the ‘trailer’ for the new movie “Diary of a Wimpy Kid” and it follows the book Exactly. It looks hilarious. Take care. Hoping and praying here at the Storch farm!
February 12th, 2010 at 12:54 am
Always thinking of you guys and Sam. I can picture your guys watching the seals in La jolla. Im thinking for the radiation to get him feeling better soon. You guys are amazing parents to all three boys and manage to keep all the balls in the air. Sending some good vibes your way.
February 12th, 2010 at 7:17 am
Praying the light at the end of the tunnel gets brighter very soon. Looking forward to seal pics!
God Bless, Love, Ellen
http:///www.caringbridge.org/ma/seanhanson
February 12th, 2010 at 7:35 pm
Glad you are mixing it up on the reading. Percy Jackson is a whole lot of fun.
I feel really bad for Sam having to have his head screwed down. I know that would panic many people. Hopefully, the radiation will do it’s work and bring on the relief.
Thanks for yet another peek into your lives. I know it takes energy and effort to keep us all informed, but we do really appreciate it. And Margot, the vast majority of students do not carry staplers in their backpacks. Only the OCD ones.
Vickie
February 12th, 2010 at 7:48 pm
Margot,
Still working on getting the new Campland pass.Greg is trying his best to get all the paperwork done as fast as possible to make it happen. Your light shines brighter than anyone I know because it radiates from the love of your children and the admiration of all who know you.Hoping for bright shining light and dear sweet Sammy to feel better soon.
February 13th, 2010 at 1:49 am
wow, talk about Sam being brave… radiation to the skull, ugh!
Truly… just doesn’t seem fair to have to endure that, both for Sam and for you and Neil as his parents. But praying that it does take care of business and gives Sam the relief he deserves !
You guys stay strong … keep the scrabble, chess and reading going… it is helping him and he feels your love, every day, every minute !
We are sending our love and wishes for easier days, every minute !!!
Love and hugs, Colleen, Nick and gang