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December 4, 2005

By Margot | December 4, 2005

Big week here at Team Sam!

Sammy spent his first night away from the family at Ninja camp on Friday night. His karate school has the kids bring sleeping bags and pillows and pajamas and they eat pizza, watch movies, practice karate and generally goof around all night. You haven’t seen cute until you see two five year olds in their sparring gear and pajamas yelling “kei ii!” at the top of their lungs and doing the one move they remember to spar with one another. There were a lot of older kids and we didn’t think Sammy was going to spend the whole night. The half camp was from 6-9pm – that’s what we’d signed him up for and frankly, I wasn’t sure he’d even want to stay for all of that. Neil and I were nervous just leaving for the part of the night. It was the equivalent of dropping him at school for us since we haven’t done that yet. We kept hanging around and Sensei Miller had to say, “Uh, are you guys actually going to leave?” We gave him all of our phone numbers three times and then took Andy to dinner at a place nearby. After dinner we did a couple of drive-bys and things looked good from the little we could see through the door at ten miles and hour. When I went back to pick him up at exactly 8:55 he had a huge grin on his face, was all sweaty from running around and said he wanted to stay the night could I go back and get his sleeping bag and pajamas. I kept saying, “Are you sure buddy?” He said, “But will you pick me up in the morning?” as if I might leave him there for a few months. I brought back all of his stuff and as I was nervously leaving and telling him to let Sensei know if he needed us in the middle of the night he said, “It’s ok, Mom, I’ll see you tomorrow. We were supposed to pick him up at 9am and Neil got there at 7:30 and was promptly sent on a doughnut run. Sammy was slightly zombie-like from lack of sleep. When he got home he slept from 11am to 4:00pm and then the Adams invited him to Christmas Nights at Balboa park and he took off again with his Christmas hat on, happy as a clam. Let’s see, out all night, slept all day and then took off again at dusk, how old is he again? As I was putting him to bed tonight he said, “Mom, I really really loved Ninja camp. What night did I sleep there?” I said, “Last night, Bud, Friday night.” He said, “Do you think maybe they’ll have it every Friday night?”

Poor Andy’s little heart broke as we were waving goodbye to Sam and Mimi as they left for the Christmas Nights festival. He really wanted to go. The only thing I could do to console him was to offer to paint (he loves to paint). We were having Kelly and Kennan over for dinner and it’s not highly recommend to get out all the paints, paper, smocks, and cover the kitchen table with paint five minutes before people are coming over for dinner but I figured what the heck. Andy paints the paper for about five minutes and then proceeds to start painting his hands and face. “I’m turning myself into a monster, mommy, a vampire monster.” I know that this is due to watching entirely too much Scooby so no one has to tell me that. I painted my hands red too and we did monster claws at each other. We answered the door when Kelly knocked with our monster hands.

Andy was great with little Kennan, it was neat to see him get to be the big kid for once. He showed her how his toys worked and was quite a ham. Cute little Kennan ate it up.

Speaking of ham, Andy participated in the karate class that Sam had right before Ninja camp. It’s a mixed class on Fridays with older kids and younger kids and some pretty high levels of belts. The Sensei (have I mentioned we like this guy?) lets Andy line up with everyone and do the moves. His attention span lasts through the stretches and then he’s off to get into all the weaponry in the back of the dojo where I have to scramble to keep him from pulling out anything that he might actually hurt himself (or more likely, someone else) with. After he runs around for a while he plops himself back in line somewhere. The top belts are supposed to in the front of the line and the lowers belts in the back in descending order, Andy plops himself somewhere between the green and brown belts. Anyway, the point of my story is that they were practicing for a tournament that some of the kids are going to tomorrow. At the end of the class Sensei had all the kids sit against the wall and had them come up two at a time to demonstrate moves. He made all the other kids yell and cheer the whole time so it would be like the tournament. As he was choosing his next two demonstrators and said, “Ok, who should we choose next?” Andy jumped up and said, “Can I go Sensei, can I go?” The Sensei said sure. “Andy, will you follow your partner’s moves?” Andy enthusiastically nodded his head up and down and then got up with a very nice girl who sincerely tried to lead him in moves. He was up there with a big grin with all the kids whooping and hollering for him. He did one move and then just started jumping up and down and running around in circles yelling “I’m up here! I’m up here.” The class was in stitches.

We got our Christmas tree this week and decorated it and put up all the lights. The kids are very excited for Santa to come. Sammy has been trying to figure out which ones are the real Santas and which ones are just guys dressed up as Santa. The candy canes on the tree have been too tempting for Andrew. He puts his finger to his chin and says, “Now which one should I pick?”

The other huge news is that Sammy is wearing his hearing aids. Hallelujah! This is due to the fact that we spent a good part of Thursday at the audiologist and they no longer whistle or hurt. It is also helped by a major bribe from Mom. Both kids now have Super Missile Shooting Ninja Turtle robots that move across the floor. I can see my father shaking his head saying “Those kids don’t need any more toys.” But hey, sometimes you gotta do what you gotta do. This was my Thursday .. I’m working away when I looked at the clock on the bottom of my computer and it reads 1:31pm. Sh*&^%$t! I race downstairs yelling like a maniac, “We have to go, we have to go! We have an audiology appointment at 1:30 and it’s 1:30 now and if you are more than ten minutes late you have to give up your appointment and it takes weeks to get another one. We have to get to the hospital in eight minutes!” Elizabeth looks at me a little like I’m a lunatic and helps me get Sammy into the car in record speed as he asks, “Why are we in such a hurry?” I Mario Andretti to the hospital and arrive at 1:50. We race to the receptionist and explain and beg and she looks up from her computer and says, “You don’t have an appointment today Mrs. Hutchison.” “What?! Of course I have an appointment. I’m twenty minutes late.” “No,” she says calmly, “in fact, we don’t have you down for an upcoming appointment at all.” So I have to explain that we made an appointment with the audiologist when I came to pick up the new molds last week and that I know I’m not mistaken. It was looking grim, she asked us to have a seat and she’d see what she could do but was sure we’d have to come back another day. By some act of God, they had a cancellation at 2pm. and they said they’d see us.

We had a great audiologist. I wanted to grab her and ask her where she’d been all my life. She patiently helped me fit the hearing aids so they didn’t whistle. She shaved away big part of the actual mold where they fit into the top of Sammy’s ear so they wouldn’t hurt him and she cut down the tubing so they weren’t half way up his head. She gave me several good tips and told me to give up on trying to get him to wear them a little bit each day and gradually increase the time he wears them. She said to put them in when he wakes up and take them out when he goes to bed, otherwise it was never going to work. So we said, “Sammy do they hurt?” “No,” he says. “So you think you can wear them all day?” “Yes,” he says. Having been through this a few times now I’m asking him every five minutes if they hurt and he keeps saying no. We leave the office and by the time we hit the first red light he says, “Mom, the blue one is starting to hurt.” Argh. I get on my cell phone and leave a message for the audiologist and ask if we can come back. She calls me back the minute we arrive home and says can you get back here by 4:30? It’s now 4:10. “What about tomorrow?” I say. “We have nothing tomorrow.” Ok. I say. We’ll make it. Elizabeth had to go home so I picked up a sleeping Andy, grabbed some chocolate milk for him and said “Sammy, we have to go back to the audiologist to get the blue one so it doesn’t hurt.” Now, to give him credit, he was tired. He had been very patient all afternoon. He took a hearing test with the aids on (more on that in a minute) and he had had it. “No, he says, I’m not going back.” After explaining the whole thing again and why it’s so important and how it takes weeks to get an appointment and thinking I’m going to have to force him into the car kicking and screaming, I strike upon an idea. “I’ll buy you a toy.” His eyes light up. “A Toy?” “Yes,” I say. “We can stop on the way back and get it?” he asks. “Yes,” I say. We went back and she fixed the blue one so it doesn’t hurt and that it how I ended up in Toys R Us buying toys for my own children three weeks before Christmas. The guy gave me a gift receipt assuming of course I was buying Christmas presents.

The bad news is that the hearing test Sammy took with the hearing aids on showed that he’s not getting a very big hearing boost from them. As I sat in the booth with him listening to beeps that he wasn’t hearing I was thinking, “Why am I struggling to make him wear these things if they aren’t even helping him hear?” It turns out the last unaided test they have was done before stem cell transplant. “His hearing may have deteriorated since then,” she says gently. Duh! I can you that his hearing has definitely deteriorated since then. I mistakenly thought they had a copy of the test from the City of Hope. Anyway, we have to get another appointment in January to reprogram them so they’ll do an unaided test then to have the most current status on his hearing. The important this is that he’s been wearing them.

As I was driving home from Toys R Us my cell phone rings and it’s my mom. “How’s everything going?” she asks. I tell her the whole story and about how frustrated I am with these things and she says. “I know, I’m having a bad day too. My car window won’t roll up and I need to go the car wash- the car is filthy.” Helllooo? (Sorry, Mom, I know you are reading this but at least you made me laugh after I hung up).

But, it’s all relative. Our hearing aid travails are nothing, nothing at all compared to families who we read about every day on the neuroblastoma listserv who are facing relapse, many of whose children are losing or have already lost the battle with this nasty nasty disease.

Blood check Monday. Scans later this month.

 

Topics: Progress Reports | Comments Off on December 4, 2005

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