LTM

This week has been a good one for Jamey. He's had a lot of energy (this can be a double-edged sword because it can be really difficult to keep up with him . . . ). It's been nice to see him want to play with his friends again. When he doesn't feel well he retreats into himself and doesn't want to see anyone. When he is feeling well he wants to play with his friends and be a normal boy. Yesterday he came home from school very excited because he had finally joined in during PE class. I think this is one of the first times this year he has had the energy to do this! How great is that?!! I just hope long term maintenance stays this way, although I have my doubt during the weeks he is taking steroids. My guess is that he will be really down during the week he's taking the steroids and fine the rest of the month.

I'm always surprised and incredibly touched when I run into someone who reads this blog. Yesterday at a training I ran into a friend who told me that she reads it all the time. It really touched me (and David when I told him). Thank you so much for caring. It means a lot to us to know that we have people who support us.

Letter From Jamey about Relay for Life

Jamey seems to be feeling better yesterday and today - yeah!!! It was gorgeous out yesterday and he rode his bike, which was really nice. Today he came home and asked to go on the treadmill (he decided it's time for him to get back some of the muscle mass he's lost over the past nine months). Yesterday we joined a gym which the whole family can use, so we're really excited to get back into shape.

We're so happy he's doing well today!!

This year Jamey decided to join his friend William and do the Relay for Life. This is the letter he sent out.

Dear Family and Friends,

Last year as you know I got leukemia (a type of cancer). I’ve decided to try and help stop cancer by participating in the American Cancer Society Relay For Life® event right here in my community. Relay For Life® is about celebration, remembrance, and hope. By participating, I am honoring cancer survivors, paying tribute to the lives we've lost to the disease, and raising money to help fight it. My group and I are doing activities to raise money and awareness for it and I thought you could help please help support me in this important cause by making a donation. It is faster and easier than ever to support me by making a secure, tax-deductible donation online using the link below. If you would prefer, you can send your contribution to the mailing address listed below.

Whatever you can give will help - it all adds up! I greatly appreciate your support and will keep you posted on my progress.


To make a donation online, visit my personal page at

http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeSouthAtlanticDivision?px=4333612&pg=personal&fr_id=9216

Sincerely,

Jamey Sultan

To send a donation, make all checks payable to:
American Cancer Society
11331 Amherst Ave.
Silver Spring, MD 20902


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I couldn't upload the bar mitzvah videos here, but here are the links for Youtube if you want to see them.

http://www.youtube.com/watch?v=QO63mAe-fCM

http://www.youtube.com/watch?v=qQht62AeU_0


It's been a difficult week for Jamey. Going back on chemo and steroids has been really tough for him, and he's been feeling pretty poorly. Today he stayed home with me (and Coby, who has the flu). He couldn't even go to fencing, which he loves, or to his friend's house. It did, however, give him a chance to recuperate.

We miss having Nurit, David's sister who was visiting us, here. She was great to have around. :-)

Sorry it's such a short blog, but no news is good news!!

Yoni's Bar Mitzvah

Jamey started maintenance today!! Yeah!!!! His counts were WAY up and he is feeling pretty good. Of course that means that he is back on chemo now, so that won't continue. While he is on long term maintenance (LTM), he will be taking quite a concoction of pills. He takes one chemo every day (two pills four days per week, one and one-half three days - nowhere near when he eats), one chemo once a week (9 1/2 pills on Wednesdays), and his steroids five days a month (four pills in the morning and three and one-half in the afternoon - near food). It's dizzying trying to keep up with everything, but the alternative isn't an option. I'm sure we'll get used to it at some point and it will become second nature. Right now we're nervous that we'll mess up something.

Last weekend we went to our nephew, Yoni's, bar mitzvah. Yoni was fantastic. We are so proud of him. David's sisters, our niece and her family were here from Israel, and another niece was in from Chicago. We had a wonderful time! We stayed up until midnight dancing and singing. It was really wonderful. One of the highlights of the bar mitzvah was when our nieces and nephew sang two beautiful Israeli songs. I've tried posting them, but am having some trouble. I'll post when I can.

Tuesday

Jamey was feeling okay this morning and early afternoon (he beat us all at bowling!), but by the late afternoon he was feeling pretty poorly. He had a terrible headache and he went to bed very early. I think it's because he started chemo again after a few weeks, and perhaps the effects from the steroids. It is so difficult for him - I hope he feels better tomorrow.

I can't wait until this entire nightmare is over. Three more years . . . . (at least until the chemo is done), then five more years . . . (until he's considered cured).

2-3-2008

This weekend we went over my sister Orly's for her 50th birthday. Saturday was a big day for Noah. He had his Consecration at our temple (basically, it is his commitment to continue his studies toward his Bar Mitzvah) and a soccer game; He was great at his Consecration (I would expect no less), reciting what he needed to beautifully. He wrote a prayer for it, which brought tears to my eyes. The soccer game was good but they lost 7:4 (did I tell you that Noah scored two goals last game and one assist this game????). We drove straight to my sister's house in Richmond. The party was Sunday night so Karen and the boys went back home so they could get to school on Monday. We spent Saturday with my family which was great. My sisters from Israel, Nurit and Sabi were there and we hung out together. The boys had a great time as well. Jamey went to sleep over his friend's house in Richmond. He stayed up until 12:00 AM and could not stop talking about it. We never let him stay so late. Jamey and his friend Nathan made movies and got to be boys. That was really nice for him. It's great to see him with energy and acting like a kid. We also got report cards last week. Jamey got "No Grade" since he wasn't in school for most of 2nd quarter (although he's kicked butt on the two math tests he's taken since he got back to school). Noah and Coby did fabulous - almost all A's and O's, and Noah was Student of the Month for December because of his excellent study habits.

Karen and the boys left Sunday at 8:00 AM to make it in time for the kids' Hebrew school. Noah had a party which he did not want to miss and Coby and Karen had a workshop. Jamey went to play with his friend Benjamin (they rode bikes and played with other kids in the neighborhood), then he went to his friend Jordan's. It's wonderful to see him be active again. Karen had a couple of her friends over, Rachel and Maya, and their kids. They had 8 kids, and they all had a ball. My sisters decided to henna my hair to cover the white hair I accumulated :).

Jamey's blood count is still not where it should be to start his maintenance program. Today we had a little miscommunication with the nurse. We thought she suspected that something is wrong and that the Leukemia may be back. We got VERY worried and were horrified. We called the Dr and she clarified that the overall blood count is low but she believes it is due to a virus, not to a return of leukemia cells. That was a relief. He came back from Richmond with a bad cold which is probably what is causing his numbers to be low. They asked us to come back Wednesday to take another blood test. He needs an ANC of 750 to start. He currently is at 290, which is lower than it was on Friday (which was lower than it was at the beginning of last week). We really want to get him started with this phase. He is also supposed to get his broviak (tube) out from his chest. We can't wait. That will make life easier.

We can't wait for March 13th which is our time to take a vacation in Spain.