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August 14, 2007

By Margot | August 14, 2007

Sam’s bone marrow is clear. We are officially NED (No Evidence of Disease). We were on cloud nine for a few days. We’ve since come down to cloud six because we know the realities of this disease -but I must say that the view from cloud six is very nice. Neil and I keep elbowing each other saying things like”Doesn’t he look great?” “Look at him run!” Before the scans we were saying things like “Does he look pale to you?” “Is he limping?” Does it look like he’s favoring that leg a little?” Psychology is a funny thing.
 
We are leaving in one week from today for Houston for the vaccine trial. Sam will be in-patient for four days then we will have a play day in Houston and on day six they will infuse the vaccine and then we will come home in time for Labor Day weekend and Sam’s first day of school the following week. My friend Nicole, who lives in Houston told me yesterday it was 102 degrees with a heat index of 112. Fun fun. >The kids have been in heaven the past couple of weeks. The Kuhns were in town for a week and we did the beach, soccer in the park, dinner out, and they took Sam and Andy on their own to SeaWorld. The boys had four older, cool, doting kids play with them for almost a whole week. Elizabeth, Joey, Andrew and Claire Marie are wonderful kids- a product of great parenting. Thank you Kuhn family!
Speaking of great parenting, we were at The Wild Animal Park with our cousins Maddie and Emily and Grandma Joan and Andrew was affectionately calling Maddie a butthead at the top of his lungs, as he did to both Emily and Maddie the enitre time they were here, and Grandma Joan walked by an older gentleman who was saying to his family, “Horrible. Horrible. What kind of parents let their children speak like that?” Needless to say, I’ll be glad when the “butthead” phase is over. It sure has lasted a long time.
Maddie and Emmy and Grandma Joan arrived the day the Kuhn’s left and the boys had Maddie and Emmy and Grandma to dote on them for a week. The girls were wonderful, such great big cousins. We just loved having them and Grandma here. We miss them already, though I’m sure the boys thoroughly wore them out.
 
Charlie Boy turned one on the 11th. The year sure went fast. I can’t imagine our family without him. He’s brought us all so much joy. He’s into cars and trucks and makes little vroom noises. He loves his books and all things ball. He’s starting to assert his will now and let’s you know what he wants in no uncertain terms. We were all swimming yesterday and I was going under water popping up and saying boo to make him laugh and after I stopped he started grabbing me by the hair and trying to shove my head under water so I’d do it again. It was funny. He’s a very physical guy -affectionate-wise and pushing-people-off the-chair-he-wants-to-be-on-wise.
 
I had a funny conversation with the insurance company today but it was not not funny as in Ha Ha. Neil asked me to call and make sure we are covered for the vaccine trial. All costs for this particular trial are covered by Texas Childrens but we wanted to make sure we have back up if needed – say Sam falls and breaks his arm while we’re there. We are covered for that by the way, but in the course of the phone call, I was asking how we go about getting clinical trials approved. We switched to a PPO in January so we’d have more flexibilty for clinical trials. So the agent said, “Let me check under “clinical trials” and see what it says. There’s a header here in your plan. Oh. It says clinical trials are not covered under this plan.” “What?” I say, “That can’t be. We’ve been on clinical trials since we were diagnosed.” “No, your old HMO plan covered clinical trials but the PPO does not,” she calmly tells me. “But we’re paying more on the PPO so we can have access to more clinical trials,” I stammer. “Well, some PPOs cover clinical trials but this particular one does not.” Ohhh Kaay. As Neil said, let’s just stop all treatment so we can get our PHD’s in insurance. Good we found this out now I guess. We are working on changing the plan obviously.
 
I know I promised pictures, I’ll try to get them up tomorrow. I really need to streamline my picture process as it involves emailing them from one computer to the other but for now I’m off to PeeWee sports and Andrew’s soccer practice. This is probably full of typos. I’ll edit tomorrow when I post pics.
 
Margot

Topics: Progress Reports | Comments Off on August 14, 2007

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