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Pain Seems to be a Little Better
By Margot | January 7, 2010
Sam seems to be doing somewhat better today. He slept through the night last night which was not the case on
Tuesday night. We were up most of the night trying to get a pain med combination that would let him sleep. We’d give him something and then an hour later he would wake up again. We were thinking about admitting him for pain when we seemed to hit the right combination at around 4:30am and he slept straight until 10:30.  Last night he slept through the night and woke up around 6:30 -always a good sign. I gave him his two oxycodone pills and he is listening to Elizabeth read his social studies book about The Pony Express right now.  Either the drugs or the social studies will probably put him to sleep shortly ;-).   He has jaw pain and his jaw even looks a little swollen. This is almost certainly a side-effect of the vinblastine but it’s a pain because he just eating smoothies today. If you are looking for a high calorie smoothie, come have breakfast with Sam. If it has a high caloric content, I throw it in there.  He’s still not walking very well and Charlie and Andy have to really careful about hitting his legs or his arm but I’m going to go out on a limb (ha ha nothing like stupid dark humor) and say that the pain is getting a bit better. It may be that we have him drugged up enough that he is comfortable but he’s not having any break through pain which is good.   When we were doing the MIBG treatment and he was having so much pain in his leg, I was very skeptical that it was tumor kill but sure enough two days after the treatment and some awful pain, he seemed to be better. I say that because it’s my disclaimer for saying that we are hopeful that the increased pain from Monday and Tuesday may be tumor kill from the rituxin/vinblastine/rapa combination because he’d been off it for a while because of neutropenia.  I still don’t have a scan schedule but Dr. Willert is working on getting them done as soon as possible. Because of some dogged persistence on Neil’s part (and I mean really dogged)Nitisinone is arriving tomorrow. Sam would be the second kid to try it for NB and it’s relatively non-toxic so please say some prayers that it actually works. After the scans we will discuss other possibilities though it gets dicey because most trials require us to be off of chemo for at least three weeks.
When Sam was going through stem cell transplant at The City of Hope there was an eighteen year-old boy in the room next to us. He was not an NB patient. I don’t actually remember what kind of cancer he had.  His mother asked if I would like to go down for coffee one morning while Sam was asleep. Over coffee she asked how Sam was doing and I told her and I asked how her son was doing and she told me he had a fungal infection in the brain. I naively asked how that is treated and she said, “They can’t treat it. There is a blood brain barrier that stops any medication that could help from entering the brain.”  So I asked what they were going to do and she said in a deadpan voice, “He is going to die.”  I was relatively young in my NB experience. I was rendered speechless and I remember wondering how she could just say it like that. Now I know that it was not her but a numb, foggy, robot person who took over to protect the real her from having to feel what those words meant.  I know this because the numb, robot me kicks in a lot when Sam is in pain, especiallly when I have to go from planet cancer to planet normal.  I was waiting for the gates to open to pick up Andrew at school on Monday and a mom in Andrew’s class asked, “So how is your other son?”  The robot me said flatly as if I were reporting the weather, “He is at home with a lot of bone pain.”  She was clearly shocked and was fumbling around for some way to make it all right that I could just come out and say that( or at least I think she was and I don’t blame her) and said, “Well, he’s probably a pretty resilient kid right? He must just roll with the punches.”  The robot me gave the expected answer and said, “Yes, he is an amazing kid.” Â
He was on the verge of spiking a fever last night and was hovering right around the “go to the hopsital number” and we told him we might have to take him in and he didn’t want to go at all.   He had me put on a short sleeve shirt instead of his fleece pajamas, put a cold pack on his head and took off the blanket he had on.   A half hour later his fever was down and stayed down all night.   Neil and I were laughing about it this morning.
I’m off to pick up Charlie boy from school. We are sitting Roscoe the dog, for a week and Charlie just adores that dog. He follows him around and sits and pets him and says, “Roscoe, you are a king dog.” I brought Roscoe with us to preschool drop-off this morning and told Charlie how much Roscoe wanted to go to school but he’s only a dog and he cant’ go. It worked right up until he had to let go of the death grip around my neck and be handed over to his teacher.
New drug on the way. More soon.
Margot
Topics: Progress Reports | 9 Comments »
January 7th, 2010 at 8:30 pm
Thinking of you all the time. Way to go Neil on getting the nitisinone. Hang in there and hoping for lots of tumor kill.
January 7th, 2010 at 8:38 pm
I love you guys!
January 8th, 2010 at 3:19 am
Sam is going to live.
Sam reminds me of Winston Churchhill, who after the nighttime bombing of London and Hitler’s declaration to take England, went to the beach and at water’s edge, facing Germany across the Straight, said” We will fight you on the beach, we will fight you in the streets, we will fight with our bare hands. We will never give up”
Sam didnt give up last night, he fought to not go to the hospital…he said, screw it, I am going to lower my body temperature all by myself.
He will never give up. Neil will never give up. Margot, as Sam’s spiritual leader you must go to the beach and tell Sam like Churchhill told the millions of scared Englishmen, that all of you will never give up.
Fight. When you get knocked down, come up swinging, like Sam did last night.
Fight.
January 8th, 2010 at 3:28 am
I am so sorry that you have to be in Planet cancer then plqanet normal. I often wonder about how you do it. On another note- on Monday at the assembly during the pledge of allegiance- I heard a kid saying it really loud and turned to see who the patrotic kid was and it was Andy- so cute! Angela (Madison’s Mom)
January 8th, 2010 at 3:44 am
You manage all the planets in your solar system incredibly well….all orbiting each other simultaneously. Impressive work on Neil’s part getting the new drug for NB, and on Sam’s part in lowering his own temperature – I believe they both often live on Planet Obstacle Crusher. And you, my dear Margot, could never be a robot…prayers and wishes for efficacy of the new drug, and pain-free planets…Lisa
January 8th, 2010 at 2:52 pm
LOVE Toms post… I agree!
January 8th, 2010 at 4:53 pm
M & N,
I know the robot well. It’s like having a split personality. Make sure to scream once in a while (preferably into a pillow or the Grand Canyon)
Let’s hope that the Nitisinone adds some magic. Anxious to hear how it works. Non-toxic – yeah!
Scott K
January 8th, 2010 at 5:02 pm
Just checking in. Thinking of you all and praying for Sam everyday.
With Hope Lisa
January 8th, 2010 at 9:26 pm
No great words of wisdom here… most of the above have already said it so well!
We all believe in You and Neil… and we believe in Sam!
Continued prayers and love,
Colleen