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.

It has been 1 year since Jamey was diagnosed. He went into remission after the first week on chemo so next week will be a 1 year anniversary for Jamey being in remission!! What a year!

Since he went off Steroids this week, he has been doing very well. His blood counts are up and is energy level is great. He started to take gym classes so he can properly workout at the gym by himself. He really likes going to the gym with me and feel like a big guy. He is doing 40 push-up and 40 Sit-ups every night and has improved a lot. We try to keep him active as much as possible as he is not doing any organized sports now except when he helps me coach Noah’s soccer team. He actually does some of the warm-ups and games with us. I think he likes that too. Coby also gets to practice with us; he is great. Check out our team website (Noah's soccer team).


http://www.thesoccersite.biz/theblazers

Summer is almost here and we can't wait to go to the pool and get some sun again. Last year we had to deal with the broviak and changing of Jamey's dressing which was hard on him. It required constant care and he did not like going to the pool because of that. The kids are signed up for camp and it looks like Jamey will be going to Camp Simcha which is a sleep away camp for Jewish kids with cancer in upstate NY, as well as (hopefully) to the Imus Ranch, which is a working ranch for kids with cancer and other blood disorders. I think he is excited.

Will post again soon.

Ugh

It's been a difficult week for Jamey, as steroid week usually is. Every month I count down the days until we finish. Right now I'm so happy that tomorrow he takes the last two doses for four more weeks.

On Monday he had Lupron inserted subdermally in his arm, which is still somewhat sore. He also had a spinal tap, chemo shot up his spine, and other chemo through a vein. He's been pretty wiped since then, staying home with David yesterday morning and with me at work in the afternoon and today. We tried to go to the party at our Synagogue, but Jamey wasn't feeling well so I came home with him and David and the other boys stayed.

One nice thing that happened was that the person who organized the Jason Campbell Classic from the Lymphoma and Leukemia Society sent Jamey a special football signed by all the players. He has quite a collection!

David has been taking Jamey to the gym to help build his strength back again. His muscles have been impacted by all the chemo and steroids that he is on, as well as the one-year hiatus (because of his lack of energy). Since they started, he has improved a lot and can now do 40 sit-ups and 40 push-ups every night. We signed him up for a 3 day class to learn about the machines at the gym so he can continue to go with David. Hopefully this will help him stay in good health and avoid potential future problems. He is really eager to do this and enjoys going.

Since is ANC was low this week he is scheduled for a blood checkup tomorrow to check to make sure his immune system is recovering.

Mother's day is this Sunday and Orly and the family are coming over to barbecue. It should be nice.

Two boys from my ALL list-serve died last night. One was 6 and the other 12. Please include them in your prayers.