By Margot | September 11, 2008
We did an new scan for us on Tuesday and Wednesday of this week. It’s called an octreoscan and it’s similar to an MIBG scan but it’s over two days and the injection is different. The Tuesday scan was 4-hours post-injection and the Wednesday scan was 24-hours post-injection. It is a much clearer scan than the MIBG scan, you can see uptake very clearly. We don’t have the final read but the left distal femur lights up (as it did on the MIBG) and on the 24 hour but not 4 hour, you could see the spot on Sam’s left arm. His VMA after two weeks in the 7’s, went from 7.8 to 10.2. So the previous two weeks, we were thrilled that it dropped by three points and now we are not so thrilled that it’s jumped by three points. HVA was 10.6 and VMA 10.2. Last week was HVA 9.8, VMA 7.8. We are trying to decide what to do. The MIBG looked good, there was barely uptake in the arm, but on the 24 hour octreotide scan the spot on the arm practially stood up and waved at us, saying “I’m still here, what are you going to do about me?” We are deciding on several different courses of action at this point – possibly radiating the femur alone or radiating both the femur and the arm and a few other options that I will detail should we decide to do them.
Sam on the way to the injection Tuesday for his scan: “Mom, it’s P.E. day. P.E. starts at 1. Can we get back for P.E.?” Me: “I’m not sure buddy, we’ll have to see how quickly we can get accessed, blood check, injection and deaccessed.” Sam “Mom, why did you schedule a scan on P.E. day? Well, it’s a good thing I played a lot at snack recess. You know what I do now? I eat my snack while I’m walking to the playground so I don’t lose any time playing.” You really have to love the priorities. He wasn’t all that worried about missing, say, math. We did make it back for P.E. and Sam finished the school day before his 4:15 scan. Andy and Charlie came with us to the second day scan since it was only a half hour and Andy is usually happy to watch the movie with Sam. Charlie kept saying, “Sam fly in machine?” Sam flying?”
School is going well. Charlie misses the boys and he gives them both a hug and a kiss at their classroom door and says, “When can we pick up my boys, mom?” He’s starting calling them “his boys” -probably because I always refer to them as “the boys.” I plugged his height and weight as a two year-old as well as Neil and my height into a little calculator on Parentcenter.com that calculates how tall your two year-old will be at age 18. Charlie’s result, drumroll please…… Six feet, six inches. I told the Sam and Andy they’d better stop bonking him. Andy tells us all about football at recess. The funny thing about it is that they don’t allow footballs at school so Andy and Jake and the boys play with an imaginary football. So, there is Jake hiking the imaginary football to Andy, who catches it, tucks it under his arm and runs through the defense for the touchdown. I crack up when Andy tells me, “Today, Jake threw a really long pass, and I jumped up, flipped over a guy and caught it for a touchdown. Then I did a flip in the end zone.”
Blood counts are good but may be down again next week. We just started temodar and accutane this week. Sam takes zofran at school for nausea and seemed to be ok yesterday. We have vision therapy and soccer today and a busy weekend which I’m hoping will stave off the dry mouth, heart pounding anxiety that comes with a jump in VMA and two brightly lit spots having waved at us in the recent scan.
We were honored to attend Max’s celebration last weekend. I’m sure you’ve all seen the wonderful pics that Deb took. The Mikulak’s strength and grace as they honored their little boy was amazing.