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Turning the Corner?
By Margot | August 23, 2009
I think we are turning the corner today. Yesterday was pretty tough. Sam was in a lot of pain in his right leg so we spent the day trying to catch the morphine up to his pain. It sucked. A lot.  I think we finally succeeded in the late afternoon and Sam was up all night until 3am watching movies and playing video games. He can’t have his hearing aids in so it’s tough for me to read to him because he misses a lot of it. He missed his last dose of morphine in the pill version because he was throwing up and couldn’t take it but when he finally decided to go to sleep, he slept all night and then woke up this morning at 8am (he’s killing me) with a big smile and said, “Hey Mom, I don’t remember that well but I was dreaming about me and Mack and Joe and Anthony and Andrew all going to a movie after tennis.”  I was glad he was having a good dream and not a painful one. He hasn’t been in much pain this morning. He say his leg hurt right before his morning dose of morphine but it’s not at all like yesterday’s pain. So either he was progressing before the MIBG kicked in and it’s starting to work or it was tumor kill and the MIBG started working yesterday. Any time there is activity in the bone there is pain. So we don’t really know which it was yesterday. I’m going to go with tumor kill because that’s what I want to go with ;-). His radiation number is down to 8.3 today. Yesterday it was at 14 and the first day it was at 39. All about right for his size. So I’m sure tomorrow we’ll be at 7 and can be released from a radiation standpoint. Whether or not we’ll have his pain totally under control by that point I don’t know. I’m guessing he’s not ready to be off morphine totally yet but maybe it will be fast. I don’t want him to have another plane ride like he had on the way here so we’ll just play it by ear.
He’s doing ok with the boredom factor playing video games.  The girl next door to us (left yesterday) was sixteen and her mother said she was so bored because she doesn’t like Playstation. So I guess I’m very thankful that Sam is such a video game nut. All of meds are making and probably the MIBG is making his stomach hurt so he hasn’t eaten much. I tried several things last night and he said he couldn’t taste anything until I tried oatmeal. I think his sweet taste buds are still working but nothing else. Anyway, he threw up after two bites of oatmeal so it didn’t matter much anyway. I asked him this morning and he said, “I was hungry until you asked me and then you made my tummy hurt. You need to wait until I tell you, Mom.”  Anyway he’s in a much better mood.  Uncle Matt is coming in this morning with some Ginger pills and some more coffee for me. 😉 He’s been great and his friend Susan came up last night and we had dinner by the window in the hall while Sam slept. Sam is all screwed up timewise. He’s been sleeping in the late afternoon and then waking up and staying up until two in the morning. Yesterday he slept until noon but today woke up at 8 so maybe we’ll be on a more normal schedule today.
Meanwhile back at the ranch… Charlie and Cousin Abby and Andy are having a good time together. Abby and Andy seem to getting along much better this go around than the last. Charlie refuses to talk to me on the phone. Sort of breaks my heart. I know he’s mad at me for leaving him but hopefully he’ll come around after I get back.  Neil said he’s having a great time with his cousins. Neil got home yesterday at around 10am after an early flight out of here.  Uncle Tommy got Sam and Andy a new skateboard and when I told Sam about it this morning he got a big smile on his face.  He still has the one we got him a long time ago and has been lobbying to get a new one.  The deck that Tony Hawk signed for him is in his room but we don’t use that one It’s a shrine ;-).   Andy had a birthday party yesterday with all of his classmates and it seemed like he had a good time. He talks to me on the phone and is very sweet and then abruptly says, “I gotta go” when he see something else going on he feels he needs to be involved with.  Â
I’ll update again tomorrow. I’m sure we’ll be releaseable on the radiation front so I’ll give you all a pain update.
Margot
Topics: Progress Reports | 7 Comments »
August 23rd, 2009 at 3:26 pm
It’s a great sign that Sam’s dreams are good ones. He’s a dream maker, that kid. So glad that you’re there by his side, Margot. Looking forward to you guys being sprung, pain-free, and home with your family. When you get back, Mack would love to play tennis with Sam and his buddies and then go to a movie. Dreams do come true. Lotsa Love, Lisa B.
August 23rd, 2009 at 4:53 pm
Oh Margot so glad to hear about IMPROVEMENT. Praying for tumor kill, you know it….
LOVE
August 23rd, 2009 at 5:14 pm
Hi:
Glad to hear Sam is doing better and will be out soon. His apetite will be in full force soon. The night we got out, Brittany ate four orders of grilled shrimp! She is still in some pain, but not nearly as much as during treatment. She was able to walk four blocks to the restaurant and back. I’ll be reading your updates and praying for Sam’s success with this treatment. Sincerely, Michelle and Brittany
P.S. The Packers won again!
August 24th, 2009 at 1:32 am
I’ll be praying for more turnaround and lots of skateboard time!
August 24th, 2009 at 2:40 am
Thinking and praying for your sanity during all of this. Take care- Angela (Madison’s Mom)
August 24th, 2009 at 5:27 am
Wishing you another day of progess and a day of no pain, no nausea, no boredom, laughter and some sleep.
August 24th, 2009 at 5:20 pm
I’m going with tumor kill too 🙂 Praying you get out of there tomorrow (if not then really soon)!!! So happy to hear that things are better today…praying for an even better tomorrow 🙂
Luv
Abra