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HOT
By Margot | October 9, 2009
Sam was injected today with his second infusion of MIBG. The catheter was place at 6:30 or so this morning and things have gone pretty smoothly so far. It’s been very calm this go around. Neil and and Sam and I played Scrabble last night and he and I stayed up and read a book last night until 1am (he was not tired at all). Today we did some homework before the infusion and now he’s watching one of the many movies Uncle Matt brought him. Ho Hum. High level radiation. He’s been in great spirits and very funny. He’s charmed the nurses and his day nurse said she just loved taking care of him because he is so sweet. He is being a champ about things as usual. His catheter really stung this morning after they put it in but he didn’t complain much about it and only told me after he was thrashing around and I asked about it. It stopped hurting before we got the pain medicine ordered.
I know this is a very generalistic, country mouse thing to say but everyone here is so friendly. I’ll change my tune if I get mugged on the way somewhere but so far the City of Brotherly Love has been lovely to us. From the security guy who laughs at me every time I come down the elevator on another “step and fetch it” errand for Sam to the nurses who took care of us last time who stop their conversations to say and enthusiastic “Hi! How’s it going?” to the cab drivers who say they’ll keep Sam in their prayers after asking why I’m on my way to Children’s Hospital, to the ice cream ladies downstairs who have Sam’s milkshake order down pat so I didn’t even have to finish ordering it – today, I said, “half chocolate, half vanilla and she said, “with caramel, this must be for Sam. Tell your husband I was thinking of a Twix bar yesterday.” Even the weather has been great. Combine all that with a good scan and you might think we are on a radiation vacation. Ha ha. Not really.
Dr. Maris and Dr. Mosse came in today and we talked about some possible options in six weeks. He is very patient and kind and hopeful that we’ll make very good progress with the second round. We’ve met some more NB parents here thanks to my outgoing gregarious husband. It’s nice to compare notes and talk to people going through the same thing. Our neighbor is a nine year old NB boy diagnosed the same year as Sam. He just left today. I’ll post his site when I find it. Neil is on his way back to California. He left at around 3pm today. He and Sam had a lot of fun. Diane, Dr. Maris’s nurse, said, “So, Sam are you going to have to do homework now that the sherrif is in town?” Uncle Matt is currently on a mission to get Sam a cheeseburger (not from the cafeteria) of which he will probably eat one bite. If you want to go broke fast, spend a little time trying to tempt Sam’s palate in the hospital. :_). I walked the 30 minute round trip to get him some Salmon from Chili’s for lunch today while Neil played a last chess game before the infusion. He took a few bites and said, “You know, I liked this yesterday but I don’t really like it today.” At least it was a nice walk. My Dad comes in tonight around 8:30 so Sam can have three step and fetchers. It’ll be great to have my dad here.
Back at the ranch Maureen and Elizabeth have been taking great care of the boys. Maureen took Andy to back to school night and he showed her around his classroom and got her to buy some books at the bookfair and a video game. Charlie went to preschool yesterday and we were both crying when I left because I was about to hop on the airplane and felt terrible for my little broken hearted little boy. Fortunately, he had a great day and did fine. I think he’s turned the corner because he’s started asking if he has school each day. Andy has basketball clinic this afternoon and his soccer game tomorrow. Maureen will take him to basketball and then Neil will be home.
I’m hoping to get Sam to email his class tomorrow to say hello. Otherwise, we’ll be hanging out doing the Monsters Inc./Silkwood contamination thing. I’ll post the radiation numbers in the next couple of days.
Margot
Topics: Progress Reports | 8 Comments »
October 10th, 2009 at 12:08 am
Great news – great post. I too am happy your dad is coming in! He’s such a doll! I am so happy that the Hospital is treating you guys like family. That is the way it SHOULD be! Take care, hope to see you guys back at school soon. We soo missed you at BTS night! Saw Andy and Charlie at BTS night – Chad was cracking up at Andy – he said that Andy ‘walks around the campus like he is the Mayor’… I laughed and said “HE IS THE MAYOR!” HE is such a great kid! Take care!
October 10th, 2009 at 2:01 am
Glad to see a post- hope all goes well. Hange in there. Positive thoughts coming your way… Angela (Madison’s Mom)
October 10th, 2009 at 11:46 am
Hoping for a quick and wildly succesful 2nd stay at CHOP and more udpates from San Diego
October 10th, 2009 at 4:01 pm
Love to Sam and the Sherrif !!!!
Thinking of all of you !
Love, the Kuhn’s
October 10th, 2009 at 4:06 pm
You stay so positive through it all and always find the little things to point out that make each day a good day. Amazing!
October 10th, 2009 at 7:48 pm
Thanks for posting as we’re all thinking of you so much. Sounds like all your boys are doing well and each getting what they need right now. Amazing the difference between this round and the first. The MIGB is doing its important work and you are too. The hope in your post matches the hope in all our hearts. Keep up the good work, Sheriff. Lotsa Love, Lisa (p.s. I’ll peek in on Andy’s tennis lesson if I can on Monday afternoon and report back)
October 11th, 2009 at 12:48 am
Thanks for another update… I live breathe and think about you all the time………… so what are the “options” they spoke of? ARen’t the two of them the nicest two docs you could ask for????
No jaw pain, no nausea from the ssk, Sam you are the MAN!!!!!!!!!!!!!!!
October 11th, 2009 at 12:48 am
Oh the food we go through as hem/onc parents. Anything to get a bite or two in… I can only imagine how tough it is for our little guys trying to find something that will hit the spot when they feel like crap. It makes me sad they miss some simple pleasures in life- they deserve the simple pleasures more than anyone. It made my heart so happy to hear about Sam’s improved scan! Hoping this next one will be even better. Sam is lucky to have two awesome parents who make sure every day is a good one for him. Sending you good wishes & lots of positive energy,
Anne & Kent White