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The Tale of Two Cities
By Margot | June 11, 2008
In Normal City we are rushing around doing all of the end of the year stuff for Sam. He a puppet show in class yesterday, he was the narrator and the snake in “The Tortise and the Hare. “ He did a great job and we all went to see it. Today is the summer birthday celebration so we brought in cupcakes for his and Joe’s birthday celebrations. I burned the whole first 24 cupcakes (slightly distracted yesterday) and Neil had to go out and get more stuff. I was quite the cupcake factory yesterday afternoon but the second batches were fine and the boys helped me frost and sprinkle them.  Sam also had his Around the World Tour Today where the kids go to different classrooms that represent different countries and learn about their culture. Sam’s class is doing Puerto Rico and he is reading about the food they eat in Puerto Rico. I booked a trip to New Mexico for the boys and I next week. We’ll leave on Tuesday after school gets out and come back on Sunday the 22nd. Basketball starts today and I’m trying to think up some good first practice drills so I at least seem organized.  Charlie is better and now is asking me, “Mom, wats tis?” for the name of things all the time. I love this age.  Andy is out of school and keeping busy. He skinned his knee yesterday and cried for at least 45 minutes straight, I finally put him on the couch with a blanket and he fell asleep at 6pm and slept all night.
Meanwhile in Cancer City: There is a petri dish in Vermont in Dr. Sholler’s lab that is growing the cancer cells from Sam’s bone marrow biopsy. The cells that are growing are the nasty, bullying, stem cell type that insist upon replicating. I called in to Jayne yesterday to schedule the blood draw that we need to do today to follow up on the Nestle trial. It was quite a feat to get it so that Sam wouldn’t miss pizza day, his birthday celebration at school and The World Tour he wanted to do and still be able to get the blood in to Fed-Ex. Jayne and I settled on 7:30 this morning so we could do the draw and get to school by 8:30. Jayne said if we were drawing blood by 8, I’d be in good shape but the nurses are just getting in around 7:30 so it might be a little early. (Christina was there and zoomed us in and out.  Sam and I made it just a few minutes late for the World Tour but he’ll get to do it.)  I also scheduled a CBC and hem panel for next Monday before we leave for New Mexico. Since it’s Sam’s last day of school, we had to dance around his schedule there again. As I was getting off the phone with Jayne, I said, “Oh by the way, do you have last week’s VMA/HVA numbers?” “Yes, she said, they are back. Dr. Willert is going to call you with them.” So that just hung there in the air there for a minute while my heart started hammering. “Dr. Wilert is going to call us with them?” “Yes.” “Today?” “Yes.” So I hung up and stared at the phone and I started to tap on my desk and stare at the phone. After much pacing and tapping and phone calls to Neil.  Neil called me with: The VMA is down to 12.  Sigh of relief. HVA is up to 46.5. S%*it. What is going on in Sam’s little body? He doesn’t have any bone pain, which he’s had in the past with high Cats.  Since the numbers are so split, I don’t know what to think. We just did a CT to rule out soft tissue disease. We did another urnine test today.   The good news is that we should have Sam’s morpho report from Dr. Brown in Texas early next week. That will give us some clues as to what might and might not work. If we have to switch quickly based on today’s urine numbers, we may have to postpone our trip but we’ll cross that bridge when we come to it. Sam’s hair is starting to fall out. Not in big clumps like it did with IV Topo/Cyclo but in little hairs on his shirt here and there. Neil mentioned to me this morning that it looked like it was thinning and then on the way home from the blood draw this morning, Sam said, “Mom, there is hair all over my shirt.”   I guess we can be thankful that the school year is over. Aside from the hair, he is still feeling fine and doing all his normal stuff, excited to start basketball tonight. He weighed in at 23. 8 kilos with no shoes and no sweatshirt so weight-wise he’s great. We ran in to Melissa and Max in the clinic this morning getting a CBC in case Max needs platelets this afternoon. They were on their way to Max’s MIBG scan. Max looked good and seemed in very good spirits. We talked about getting some flame stickers for his wheelchair.  Please think good thoughts for his MIBG today.
Margot
Topics: Progress Reports | 2 Comments »
June 12th, 2008 at 12:30 am
I’ll go give blood next week for Max.
June 12th, 2008 at 3:00 pm
It’s seems as though Sam has been very busy!!! The end of the school year is always so fun. I’ll keep you all in my prayers that there is some easy explination for the numbers.
With Hope
Abra McKean
Mommy to Superhero Nate