Sunday, May 25 2008

We have had a good week. I feel like life has definitely gotten a lot easier in maintenance. Jamey is feeling better, most of the time. It's almost (dare I say it????) normal. That feels pretty good.

I do have to get Jamey's leg checked. Last year he had a lot of pain in his right ankle. Children's did an MRI, but nothing showed up. The pain is starting up again (and his other ankle still has the terrible black and blue marks - kind of scary, but we're getting him new shoes today in case it's the shoes). This can be significant because one of the major worries is that Jamey can get ON (osteonecrosis), which is when the bone loses its blood supply and dies. Two of the medicines that Jamey is on can create this (steroids and Lupron), so we really have to be careful. The only symptom for ON (as I understand it) is pain. Anyway, we definitely want to get it checked out.

I started training for the 100 mile SeaGull Century ride for the Leukemia and Lymphoma Society. It's the bike ride that David did last year. Ellen and I are doing it. I'm a little nervous about it - don't know if I can ride 100 miles - but am pretty determined. So far I'm riding 20-23 miles at the gym, and Ellen and I are going out tomorrow to try a 20 mile ride on the path (hope we don't get lost :-)). I am really hoping that Jamey will be able to join me for the last few miles of the ride. We rode 6 miles last week and he was okay (although a bit winded - we had to stop several times).

We are so glad to see that Jamey is determined to get his muscle tone back and get back into shape. This year has really depleted him, and he feels it. He is going to the gym once or twice a week, doing soccer practice with Noah, and plans to go to track camp for a week this summer with Noah and Coby. We talked about it because I was worried that he will feel bad if he can't keep up with the other kids, but he wants to build his stamina up and thinks this is a good way. Noah has been going to the camp for the past two years. It is at the University of Maryland and run by the track coach there, Andrew Valmon (a friend of ours). He is awesome with the kids - they always leave feeling good about themselves and what they've accomplished. I'm really proud of Jamey for wanting to do this.

We are also trying to plan for Jamey and David to go to Israel in December, but are unsure if it will be feasible. It would be a very nice trip before Jamey's Bar Mitzvah, though (which we are also starting to plan). He will have his Bar Mitzvah in Israel next summer, so we can be with David's family, as well as something here on Labor Day weekend, 2009. We are planning for the Bar Mitzvah on Saturday at our temple, then a nice party on Sunday at Smoky Glen Farms here in Rockville. The theme will be the Olympics, which I think will be a lot of fun, and there will be a lot of games for the kids.

I, meanwhile, am getting very psyched for my trip to PARIS with my mom. My parents are giving me that for my 40th birthday (yes, I know it's hard to believe that I'm turning the big 40). My mom and I are going ALONE to Paris on June 19th and staying a week. I am very psyched (don't we all wish we had parents like this????). All I can say is WINE country . . .

We are so thankful that Jamey seems to be doing well. Last night another boy from my list-serve died. He was 18 and had relapsed. I think about how lucky we were to have found out about Jamey's leukemia when we did and not later. It is so significant that his white blood cell count was only at 7,000 when we found him. This enabled him to be a Rapid Early Responder (RES), where he went into remission right away, instead of a Slow Early Responder (SES). Usually kids whose counts are above 50,000 are the ones who are SER and who have relapses. The boy who passed away yesterday started out with a white blood count of 149,000. We are also lucky that they do the MRD test, which is also a major determiner of relapse, and that Jamey's was negative. This is fairly new science which they did not do even a couple of years ago.

I can't wait until this fifth grade year is done. We've had such a difficult time at Jamey's school. His teacher is terrible - doesn't know how to teach and has little relationship with many of the students - and very little has been done about it by the administration (that parents can see). Many of the kids in the class have tutors. In the end I am teaching Jamey a lot at home (which he actually loves). It's a good thing that I have excellent math teachers at my school who have given me plenty of stuff to do with him. We don't know what we will do with the other two next year. Noah is on the waiting list for the magnet program (it is very difficult to get into), so we might send him there (although we're not sure what to do). His and Coby's teachers this year have been excellent, and we are hesitant to take them out of the Spanish Immersion program. I'm pretty sure Coby will stay at his school, but we won't make a decision about Noah until we find out about the magnet later in the summer.

We have one more week of fun, then steroids (YUCK) again.