October 21

It's been a good few weeks with Jamey, although steroids started yesterday and he is not feeling well right now. He's been active and fun, and we've had a good time. Last week he was invited to a private tour (by Jason Campbell - QB) of the Redskins practice stadium and locker room by a wonderful person we met at the Jason Campbell Classic. He had such a great time! In addition to this, when he got back to school he was told that his teachers gave him an award as student of the month. We couldn't be more proud. He's really doing great, in spite of all the obstacles he's facing.

The other boys are also doing fine. Noah's soccer team remains undefeated, and Coby started guitar classes a couple of weeks ago. His week is full of soccer and guitar now - the two things he loves the best! They are also doing great in school and really enjoying Sparky, our new puppy (he's so cute!).

David is starting to get ready for his and Jamey's trip to Israel in December. They are so excited to be going!

Here are a couple of pictures from our ride. :-)

I DID IT!!

Yesterday Ellen and I completed the 100 MILE bike ride. Boy does my butt hurt!! I still can't believe that we were able to do it. It was really difficult, but we followed David's advice - go 20 miles at a time. Anyway, our total ride time was over 6 hours. The best part of this was that I raised over $4000 for the Leukemia and Lymphoma Society. I can't thank you all enough for your support.

Jamey is doing great this week - we went to see Legally Blonde, the musical, today, and had a great time. We can still see some of the effects of the steroids, though. Hopefully those will dissipate soon. He is very excited because he starts guitar lessons tomorrow (at this cool place - Bach to Rock) and horseback riding next Sunday. The other boys are doing great, also. Noah will also start guitar tomorrow and Coby will start on the piano because his fingers are too small for the guitar.

I'll try to update soon!

Great Wolf Lodge

We had a great time at Great Wolf Lodge! I was so happy because the week had been extremely difficult and stressful. The steroids made Jamey feel terrible and it was a pretty horrible week. I'm just happy it's over.

I definitely recommend going to Great Wolf Lodge if you have a special weekend. We had such a good time! The indoor water park was excellent and we played a ton. Definitely worth it. It was great bonding time.

My ride is on Saturday. Ellen and I know we will make it - but it is SCARY! 100 MILES. Ellen and I will cheer each other on, though - when I'm tired she'll push me through and I'll do the same for her. Perhaps I'll lose the weight I put on with birthday cake last week . . .

One month later . . .

Okay, so I know it's been a month. That's way too long to wait for a post, but we've been so busy! Soccer season has started. Coby is now on two teams and training four days a week with 2 games every Saturday. Noah is busy with his Classic team, with games on Saturdays. To add to this, Jamey started gymnastics (to get his muscle tone back - or start to) on Saturdays. Needless to say, our Saturdays are pretty busy. In addition to the school, activities, chemo, etc., we got a new puppy last week. His name is Sparky and he is too cute! He is a mixture between an English springer spaniel and a pointer. Here are pictures of both the dogs. They are getting along great. I think Lika is happy to have her own "pet". Never a dull moment . . .

Jamey started middle school and seems to be enjoying it. He likes his teachers and the work doesn't seem too taxing. His grades are great, and I know he is putting in a lot of effort. He also started flag football after school on Thursdays. Hopefully he'll get passed to soon . . . Today he started another round of steroids. He woke up this morning and said to Noah, "I start steroids this week, so I want to apologize to you in advance." At least he has a great sense of humor.

The other boys are in their new school, also. It's a good place for them and I'm sure they will be very successful there. The teachers in the Center program (Noah's program) are phenomenal - really dynamic.

I also started my new position at my school - back in the classroom for part of the day. I'm really enjoying being with the students. They are invigorating!

This weekend we are going to Great Wolf Lodge for my 40th. We are all really looking forward to it.

Have fun!!

9/2/2009

First week of school went well. Jamey, Noah, and Coby love their new schools. We are all adjusting to a new schedule. We had a very busy but nice Labor day weekend. We also started the after school activities and about to start Hebrew school next week. Karen and I started to do plan for the Bar-Mitzvah and need to get our act together as it is only one year away. We have the place reserved, but need to get a DJ, photographer, etc. It should be fun but just need to start. We got our tickets to Israel for next summer booked which is where we will also celebrate Jamey’s Bar-Mitzvah. It will be in June 25, 2009. I need to get going on planning that as well. This is going to be a busy year.

August 20th 2008

The boys are at their grandparents at the Farm in VA. They are having fun in the last week before school. Karen and I miss them a lot and it's strange not to have the kids with us. The house feels empty. I did get an opportunity to go to the gym (multiple times), and take Lika for walk + give her a bath.

Jamey had an awesome time at Camp Simcha, a Jewish camp for kids with cancer. He came with great stories, had wonderful counselor who spoiled him. He learned to use a kayak, go jet skiing, zipline, and went on a helicopter ride. He was suppose to go for 4-5 days but ended up staying the full 2 weeks. He said he definitely want to go back next year. It was hard not having him around. We decided that we don't like when the kids are at sleep away.

Last weekend we went to a lake nearby and went on a canoe and a kayak. The boys had a great time. Karen spent too many hours trying to get reservation through frequent flyer for our next trip to Israel for the summer of 2008. We are supposed to go in June 2009 for Jamey's Bar-Mitzvah.

On September 13th we are hosting a Texas Hold 'em at our house to raise money for the Leukemia society for Karen's bicycle ride. She is doing very well in training; up to 50 miles. She is dragging me along sometimes and it not easy doing 50 miles when you don’t train!!

School starts next week. The kids are ready. Jamey is going to middle school at Westland. Noah and Coby will be going to Lucy Barnsley which is less than a mile from our house. We are happy about that.

That is for now. We'll post soon.

Sorry it's been so long!!! Jason shamed me into writing, but I'm happy to report that I haven't written because it's been going so well. We have had a wonderful summer. Jamey went to the Imus Ranch in July. He had a fabulous time there, learning to ride and take care of horses. He also learned how to rope a calf, etc. He came back to us a cowboy, complete with a cowboy hat, boots, and gloves (as well as a lot of "colorful" stories and language). One of the great things about the Imus Ranch, though, was that they were very concerned with eating healthy and exercise. He came back stronger and more fit than when he had left. Right now he is at Camp Simcha, a camp for Jewish kids with cancer. He is having a blast there, too. Originally we thought he was only going to stay a week, but he enjoyed it so much that he has decided to stay for the second week too. It is a great place, although I am worried that there is a lot of junky food there. I've worked very hard with Jamey (with all the boys) about the importance of eating healthy. Anyway, he is having a great time (except for a slight fever one night which went away the next day), which is what we want for him - especially after he had such a lousy summer last year.

Noah and Coby are also having a great time this summer. We went to the farm for a few days, then they stayed for a few more and were completely spoiled by my parents. We also went to NY last weekend for the unveiling of my Uncle Cal's tombstone. Although the occasion was sad, we had a lovely time with the family. This summer has been very relaxing and full of fun for all of us.

I am training hard for the bike ride. Last week I rode 45 miles (OF HILLS) in Poolesville. It was HARD. My butt hurt so much after . . . . and yesterday Ellen and I went on a 20 mile ride in the morning. This weekend is a 50+ mile ride. I hope I can make it! Every time I doubt myself (on the ride), I remind myself that Jamey went to hell and back this year, and I can certainly do this. It's pretty motivating.

Only one and a half more weeks of vacation for me (BOO HOO) and two for the kids. I am definitely not ready for the summer to end this year. I have no desire for school to start - I wish this could continue indefinitely.

Imus Ranch

Well, it's been quite a long time since I wrote. As usual, no news is good news. Jamey is doing well. His last round of steroids was difficult for him, although not as bad as the dex had been. We had hoped that this steroid would have no side effects, but no such luck. Last Tuesday he went to the Imus Ranch, where he is apparently having a ball. We got a short (but sweet) letter from him today -

Hi, it's Jamey, I'm having a great time here. They have a pool and the horse I'm using is named Rino. He is brown with some white on him. I miss you guys too. Love, Jamey

He's so prolific! :-)

This past weekend was our 16th wedding anniversary. We had a wonderful time. Noah and Coby went to my parents' farm, where they had a great time. They got to drive the mule (a type of 4 x 4) and do all sorts of fun stuff. David and I went to dinner on Friday night to celebrate. We had a lovely time, then on Saturday we rode our bikes 35.5 miles with Team in Training. That's the group from the Leukemia and Lymphoma Society that help you train for the fundraiser. I was exhausted by the end, but it felt good. We worked around the house a bit after that, then went out to dinner with the Bournigals. On Sunday we went to the farm to pick up the boys and had dinner with my parents (played a little croquet, had some sangria . . . ). It was nice. All in all it was a wonderful weekend.

Jamey gets back on Thursday night at 10 pm. I am excited to see him, but more so that he is enjoying himself so much. Next week he goes on steroids again (spinal tap on Monday), then the following week he is off to Camp Simcha. Hard to believe the summer is half over . . .

June 29, 2008

It's been a long time since we wrote. Jamey is doing well these days. My mom took me to Paris last week for my (gulp) 40th birthday present. It was a wonderful trip - really amazing - the first time I've been away from the kids for more than a day or two. We went everywhere in Paris and had a ball. It was really beautiful. Leora came here to help David with the kids, which worked out great. Poor David, though! Jamey got a fever on Tuesday night. On Wednesday he took Jamey to the clinic to see what his blood counts were. Luckily his counts were high enough that he didn't have to go to the hospital. By Thursday he was fine (yeah!). Tomorrow we head to the beach to a friend's house. We'll be back on Saturday because Jamey heads off to the Imus Ranch for a week the following Tuesday.

I'm a little nervous about the 100 mile ride. I haven't been able to train for two weeks (although we walked all over Paris), and won't be able to do this week either. I really need to get on the ball with it. I've only done 27 miles so far. The kids will stay at my parents' house on David's and my anniversary (July 12) so we are hoping to get a 35 mile ride in (40 perhaps?), which will get me up to speed.

This is the letter I sent out about my ride. If you know anyone who might be interested, please forward it to them. As always, thanks so much for the care, love and support you've shown us.

Last May our son Jamey was diagnosed with Acute Lymphoblastic Leukemia. Jamey has had a tough year with his treatment, but he is doing well and in long term maintenance right now. For the next two and a half years he will take daily chemo, as well as other treatments in and out of the clinic. We are lucky, though, because his type of leukemia is curable. This is in large part to the money that the Leukemia & Lymphoma Society has devoted to research. We still have a long way to go, though. You can see what his year's been like and track his progress through our blog. The link is http://thesultanfamily.blogspot.com/

I will be participating in the 100 mile SeaGull Century Bike Ride in October, raising funds for The Leukemia & Lymphoma Society (LLS) as a participant in their Team In Training program. I'm asking you to help by making a donation to my fundraising campaign.

Please use the link in this email to donate online quickly and securely plus learn more about my progress. You will receive a confirmation of your donation by email and I will be notified as soon as you make your donation.

http://pages.teamintraining.org/nca/seagull08/ksultan

Each donation helps accelerate finding a cure for leukemia, lymphoma and myeloma. More than 823,000 Americans are battling these blood cancers. I am hoping that my participation in Team In Training will help bring them hope and support.

On behalf of The Leukemia & Lymphoma Society, thank you very much for your support. I greatly appreciate your generosity.

P.S. I would appreciate it if you would forward this email to as many people as you can to encourage them to donate as well. Thanks again.

Thank you so much for your support!

Karen and David Sultan

Long Time No Write . . .

It's been awhile since I wrote. I guess no news is good news . . .

Jamey is doing well, although he has not been feeling well every night for a little over a week. I plan on taking him to the doctor tomorrow to see what is up. I'm a little worried, to tell you the truth. I hope he's not coming down with something.

Other than that, things are going well here. I am training for the ride (getting nervous that I will not make the 100 miles!!) with Ellen. We had a bike accident last weekend so we took it slow today. I leave for Paris with my mom on Thursday (yeah!!), and that is wonderful, although it is also a bit nerve-wracking. I don't think I've been away from the boys except for the occasional sleep over since Coby was a baby. I am pretty excited, though! In addition, Leora is here to help take care of the boys while I'm gone. She's so wonderful. The boys are definitely happy she's here.

Work is a bit stressful right now. For me to remain part-time I have to change my job a bit. I don't want to, but I have to keep my eye on what's important right now, and that is staying part-time.

Jamey is very excited about the idea of going to middle school. He had a great promotion last week and received the Presidential Award for Excellence because his grades are so good (yeah, Jamey!). All the boys, in fact, got excellent grades. We are so proud of them! They have been doing so well.

I love summer!!!

School's Almost Out!

Jamey was on steroids this week. The doctors changed everyone on his study from dexamethasone to prednisone (types of steroids). The prednisone was much easier on Jamey. He had very few side effects, which we are thrilled about. Today we are celebrating Jamey's 12th birthday. Actual date in June 17th but this was the best weekend we could find to do a party. He invited 5 friends to dinner, movie, and a sleep over. Nothing big just get small party. We are still trying to figure out what do do in December. I am going home to visit my family Israel and was planning on taking Jamey. The tickets are very expensive so I may go alone. He really wants to go so I am waiting to see if the price goes down in the next few months. It will be nice for Jamey to go see my family who he has not in few years. His treatment is going as planned so far; continuing on daily chemo and monthly Dr visits + additional chemo /spinal tab. This is the treatment for the next 2.5 years.
Karen and the boys can't wait to be out of school; next week is the last week of school and off to summer vacation!!
We do not have any major vacation plans and the kids will be in camp for few weeks while Karen is working.

Today we have soccer games all day and it is going to be 95 degrees outside! Coby has 1 game and Noah has 2 games.

Well, got to get ready to plan the day. Will write soon

Coby's 7th Birthday

It was Coby's birthday this weekend. We went out to dinner at his favorite restaurant, a Japanese steakhouse where they cook in front of you, with the Kaminows. It was a really nice time. Today we had his birthday party - 20 kids for a cookout at our house to celebrate his birthday. They had a water balloon fight, which we thought would last for a long time. We filled up 500 balloons with water (it took all morning) and the kids used them up in 10 minutes! Jamey was great. He took charge and invented another game for the kids to play, and they had a ball. It was a very nice birthday.

Jamey is going tomorrow for his spinal tap which he gets regularly as part of the maintenance program. Karen will take him in at 8:30 AM. As a treat they will go to out to lunch at California Pizza (one of Jamey's favorite places) and to the movies together to see Iron Man, if he feels up to it when he is out of his surgery. He is also going to be on steroids this week, which do not make him feel good (although, last month was not as bad).

I am traveling to Chicago on business for 2 days, leaving tomorrow very early in the morning. I will get to see my niece Liron since she is living in Chicago. We are looking forward for next weekend. We will be celebrating Jamey's 12th birthday (a few weeks early). He is very excited to have his close friends come over and sleep over. Only one more year until his Bar Mitzvah. It's hard to believe. We put a deposit down on a place this week. It should be a lot of fun.

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.

Jason Campbell Classic

WOW!! What a day for us. We started the morning at the Lowe's Island Country Club in Sterling, VA where the boys met several Redskins. They were first introduced to Darrell Green, who was very nice and signed a football and towel for Jamey, then took a couple of pictures with the boys. Next we met Jason Campbell, who was really neat and also took pictures. We also left shirts for all the Redskins to sign for the boys. Jason also introduced Jamey to the golfers at the beginning of the tournament. Another cool thing that happened was that Darrell Green took Jamey to the putting green, taught him how to put, and played a little golf with him. I have to say, that was really cool . . .

While the golfers played golf, the boys and I went to the Leesburg Outlets to shop, and we returned at the end of the tournament where we met up with my parents and David. The rest of the evening was incredible. Jamie K., one of the people on the committee for the event, took us under his wing and introduced the boys to all the Redskins there. They boys got autographs on their hats and had a ball. We went into dinner next, where Jamey was introduced and gave a short speech, then they had a live auction. The best part about this was that the Jason Campbell Golf Classic raised over $150,000 for the Leukemia and Lymphoma Society!!!

I have to say, this has probably been one of the best weeks of Jamey's life - first the assembly from last week, now the Classic, on Saturday we are at Relay for Life (where he raised over $1500 for the American Cancer Society), and on Sunday he has something super fun with the boy scouts.

Late Night

It's amazing how things affect me now. I noticed a bruise on Jamey and lost my breath because black and blue marks are a sign of leukemia. It's easy to think we're out of the woods, but there is definitely a part of me that still waits for the other shoe to drop.

I'm sure Jamey is fine, but I don't know that I'll sleep tonight.

Last Week

Last week was a great week for us. Jamey is feeling wonderful and had a lot of energy. The best part about last week was Friday, though. Rock Creek Forest ES had an assembly on Friday to celebrate that they raised over $4000 for the Leukemia and Lymphoma Society (yeah, RCF)! The assembly was amazing. They talked a little about blood cancers, then the counselor said that RCF had a student with leukemia and told them Jamey's name (most of them knew already). The kids (all 500 of them) started cheering for him. I had tears by then . . . After that they showed a video of an interview that Mr. Hall (the amazing art teacher) did with Jamey. Then Jamey took questions from the kids. The questions they asked were fantastic ("did the treatment hurt?", etc.), and Jamey stood in front of the kids with a microphone and was phenomenal. He was really amazing, just walking around with his microphone and taking questions ("Okay, I'll take one last question . . . "). I have to say, it was pretty cool. The most exciting part of the assembly, though, was that Jamey got to shave Mr. Hall's head (as a treat for the great fundraising job!). The entire school was cheering him on ("Go Jamey, Go!") - sorry I'm gushing, but it was truly unbelievable. Jamey's head was so big after that he could barely fit into the car. :-) He said to me, "wow, I feel popular!"

This weekend was also excellent. Yesterday we had soccer games for Noah and Coby, and they both played great (the Blazers and the Tigers both won). Between games we had a picnic with friends, got a little sun, and had some fun. After that Jamey went to William's to play and we came home for a bit. At night we went to a party (with the boys - Jamey and Noah had friends sleeping over) which was a fundraiser to help the neighbor of a friend bring her kids over from Africa. We all had a great time.

Today David spent the day digging a ditch (I think it's called a French ditch - with gravel and a special pipe) in the backyard to try and solve the problem we have when it rains hard (water stays in one area of the backyard). He didn't finish, but he did a ton, but he was so tired that he fell asleep before 8:00.

This week will be exciting because the Jason Campbell Golf Classic is on Wednesday and Relay for Life is on Saturday. Jamey raised over $1300 for the American Cancer Society through Relay - yeah!! (and thanks to all who donated . . . ). Next Monday he has a spinal tap, gets Lupron, and starts steroids (YUCK!).

April 17, 2008

It seems inconceivable to me that it has been almost a year since Jamey was diagnosed. What a long time . . . what a short time. I wonder when I will stop reliving the night he was diagnosed - when I will really be able to wrap my brain around the fact that Jamey has cancer. It is still hard to get.

Jamey is having a great week - he's been going to the gym (lifting light weights and doing some cardio), and today he played soccer at Noah's practice. It was so nice to see him running around! I think the nice weather is definitely keeping his spirits up. He has been in such a good place this week - something we don't take for granted anymore. He is very excited to go to Richmond on Saturday, as well as to the Jason Campbell Classic on Monday. :-)

Today in Congress . . .

Today Jamey and I went with an advocacy group, Children's Cancer, to lobby members of Congress. Our main goals were to ask for increased funding for NIH (National Institutes of Health), and for the Congressmen to support bill HR 4450, which is the Pediatric, Adolescent and Young Adult Cancer Survivorship and Quality of Life Act (phew!). This Act creates and mandate and funding for NIH to research the late effects of cancer treatment on kids. It also requires the CDC (Centers for Disease Control) to expand their cancer program. We met several other survivors and their parents, and it was wonderful to be part of the process. It was really neat, and I feel like I did something to help with this very important cause.

When we got home from DC, David took Jamey to the gym. He really needs to start getting back into shape. He's barely done any exercise this year (with good reason), but he is able to now. He will be going on a new medicine soon, and it has the potential to give him osteoporosis or osteonecrosis (as do the steroids and chemo he is on). The bone specialist told us that Jamey's bone density is excellent, but that he will need to have good nutrition and exercise to keep it up. Anyway, he went to the gym for the first time and had a ball. He was so excited when he got home! David and he will do this together after Hebrew school on Mondays and Wednesdays, and he can go with me another day during the week.

We are also getting ready for Passover. Saturday we are going to Orly's, then we will have people over on Sunday, then Monday is the Jason Campbell Golf Classic for the Leukemia and Lymphoma Society. It will be a busy weekend.

Steroid Week

Sorry for not writing for such a long time. This week is steroid week for Jamey. It hit him pretty hard. He gets so tired, with no energy to do anything and he can't concentrate. He also gets very sensitive during this time and has a difficult time controlling himself. We feel so bad for him, but are happy that it's only one week a month!

One of the things we've been looking at carefully is the health of Jamey's bones. The steroids that he is on can give him osteonecrosis (dying of the bone), and he will be starting a new medicine next week that can also affect the bones. On Monday we went to see an endocrinologist who specializes in bones (go figure - there's a doctor for everything). She ordered some tests and will be keeping an eye on Jamey to make sure his bones stay healthy. Today he got a dexascan, and we will get the results tomorrow. The doctor, though, told us the preliminary results look good. Yeah!

I tell you one thing, this experience is never dull . . .

Tonight I would like you to send a prayer for a little boy names Elijah. He relapsed last month after a bone marrow transplant (2nd relapse), and his parents found out today that there is no chance for a cure. He is two years old.

SPAIN

Sorry it's been so long since we've written, but we had a fabulous time in Spain. The boys were great. We walked everywhere and visited Madrid, Toledo, Seville, Cordoba, Cadiz, Ronda, Mijas, and other interesting towns. We got to see our good friends Todd and Eva and their family. They treated us great and became our tour guides. Jamey got to see Alex whom he missed, since they moved to Spain last summer. This was a very much-needed family vacation. The nicest thing about Spain, though, was that Jamey was just about as energetic as he used to be.

Spain is a gorgeous country. It was so interesting to see the castles and palaces, as well as the daily modern life over there. The history is amazing - we saw things built in the first century. How cool is that!?

We are back in town getting back to real life. We have some scheduled doctor's appointments for Jamey (SO MANY). We are starting up with the sports and Spring activities. We'll put some pictures once we had the chance to go through them.

Next week Jamey starts steroids, so we are expecting that he will be feeling sick. :-(

By for now.

Steroid Week

This has been a pretty bad week for Jamey. He had his broviak out on Tuesday, and he's been on steroids since Monday. It's really taking its toll on him. He's feeling really bad - can't eat, is very itchy, just feeling horribly. We feel so bad for him - he inconsolable. He tries to be so good, but he just feels so rotten. I think he'll stay home from school tomorrow. I can't wait until this round of steroids is done.

Monday, March 3, 2002

I could not login. Here are my write-up for today.

It has been about a week since we wrote. Things has been going well this week. Jamey seems to be in a good place and getting used to the new medicines which he will take for the next 3 years. It is an adjustment for all of us but definitely a lot better then what the first 8 months have been.

Today Jamey had chemo at the clinic. We have a new doctor because our old one went to work at the National Institutes of Cancer. He seems very nice (we are lucky because he is a friend of a friend and has been following Jamey's progress all along). Jamey seemed to be doing well, although a bit tired. This is his week on steroids, so it will probably be a difficult one for him. Tomorrow he is getting the broviac out which is great. He is nervous about this: it means shots and needles. It's good in the long run, though. Not having it will allow him the freedom to play and do sports and other activities which he has been limited to. This is a milestone for us. It is hard to believe that we have reached this time - it seems like yesterday (and forever) that we started this journey. Reflecting about it over the weekend I can't believe that we are at this juncture. It is still very emotional for us - to talk about our child and cancer. Some days I still can't wrap my brain around it.

Jamey had a special program at Temple on Friday night. He participated in the service; read in Hebrew and was part of a play. It was nice seeing him getting involved again. Noah had his birthday over the weekend ate a donuts place. It was fun but the place was very small for all the kids we had. They also ate way too many donuts. Noah also had a game today; we won 9:3 and going to the playoff next week. This should be an interesting game. We are gearing up for the Spring season.

We are getting ready for our trip to Spain and getting a little nervous. We started to pack so we can see how many suitcases and what we need to pack. I went to Canada for business for few days so I left Karen alone for few days with the kids. As always she Took care of things. I don’t like to be away much but have to travel every 4-6 weeks.

Jamey decided to try Camp Simcha over the summer. It is a sleep away camp in NY for kids with cancer. We are not sure we are ready for him to sleep away, but it will be good for him to be with other kids who have experienced what he has. He should find some solidarity in numbers. He hesitated at first but now seems to be ready. The boys will also go to the farm for a week to enjoy their grandparents.

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.

January 25

It's been a long time since I wrote a blog, but I've been very busy (and wiped at night!). My uncle passed away early Thursday morning. He was an incredible person, and we were very sad to see him go. The boys have some great memories of him - he was a big joker with them. I have incredible memories of him - you couldn't find a nicer guy - and am sure that I will always chuckle to myself when I think of my Uncle Cal. His funeral will be this weekend. David's niece is also getting married on Sunday, so we're trying to figure out the logistics for him to go to the wedding and the boys and I will stay with my family (although the boys will not attend the funeral) while my aunt and cousins begin sitting shiva.

This week has also had some good. On Sunday my best friend came from Spain for a visit, so I've been able to spend time with her. Eva, David, and I planned out our trip to Spain, and we are so excited!!!! I can't even tell you how much I miss her. Also, yesterday David's sister, Nurit, came in from Israel for the wedding and Yoni's bar-mitzvah. We are excited about having some time with her.

Jamey is doing much, much better. He wasn't able to start maintenance this week, though, because his counts were too low. We are hoping that he will begin on Monday. I will drop off a tube of blood at the clinic today to see how his counts are. On Wednesday, Jamey went back to school, although he was definitely not happy about going. He asked me if I could just teach him at home for the rest of the year. As much as I would love to do that, I don't particularly think it's in his (or my) best interest. In any event, it's been a bit easier every day at school for him. He has a new teacher, whom he seems to like and who seems very competent. Last week I had a meeting with his school about him coming back and I left feeling like they were really going to take care of him. I think he'll be fine once he gets into the swing of things.

This week the Leukemia and Lymphoma Society asked Jamey to be their honoree at the Jason Campbell Golf Tournament, which will raise money for the Society. Jamey was very happy to do it because he knows that their research has saved many lives, including his own. I was surprised when he agreed because he does not like to talk about his leukemia - I'm not even sure if he acknowledges that he has leukemia yet (I think there is still some denial in him about this whole thing). I have to send them a picture, and he even wants me to take one with his hat off because he thinks it will be better for the cause. That's a big deal because he always keeps his hat on (except when I'm putting whipped cream on his head!). The event will take place in April, so that is something else we have to look forward to.

This past week has also been a big one in leukemia research. They found what causes leukemia - a type of stem cell. The implications of this are huge, not in the least I would like to get Coby and Noah tested for the stem cell. Here is the article, if you are interested. It's short and extremely interesting. http://sciencenow.sciencemag.org/cgi/content/full/2008/117/5

I will try to update more regularly!!

At Home . . .

Well, we've been home for a little while, and it was definitely a good decision. Jamey is feeling better now that his body has had some time to recover. His blood counts are up a bit, and he has more energy. He's very happy staying home and learning with me. We've been very consistent -doing math every day for 1 - 2 hours and language arts for an hour. His science and social studies have suffered, but I don't have the curriculum for that so I haven't been able to cover it. He will definitely go back next week, though (to a new teacher because his left last week). Tomorrow I have a meeting with the school about how to catch him up and ease him in so he doesn't feel overwhelmed. He's almost caught up with the math, so I don't think it will be too bad for him, and he was so far above grade level for reading, that it is a non-issue. It's awesome, though, to see him feeling stronger.

Noah and I went to NY this weekend for our alone weekend. We had such a good time! My parents made sure to take great care of us. We saw my sister and nephew (he is so cute!), went to the Museum of Natural History, and then to a great restaurant (I've never eaten such a good artichoke). Noah really enjoyed a weekend where the focus was on him, with no talk of cancer. I also had a great time. A big THANK YOU to my parents for being so wonderful with us.

While Noah and I were in NY, David took Jamey and Coby to Richmond to Orly's house. They also had a great time with their cousins (how could they not?).

If Jamey continues to do better we will start maintenance next week. Things are definitely looking up!

Hard Times . . .

It's been a very difficult few days for Jamey. His ANC has dropped very low - it's down to 50 right now. When we talked with the doctor last Thursday, she told us that Jamey will probably not be able to go to school for a few weeks (at least not for full days and not consistently). David and I decided that we will keep him home until he has the energy (he has absolutely none) and the counts to go back. We're figuring 2 - 3 weeks. I went into work today and left Jamey home alone in the morning. David came home in the early afternoon (he was able to work from home). I felt so torn, though. While I was there, I really felt like I should be home taking care of Jamey. It's a terrible feeling - guilty no matter what (although mothers know this feeling well). I talked with my friend Monica while I was at work, and she reminded me that I was being ridiculous - that my place is here with Jamey and that the school will be fine. She totally understands what I'm going through because she's going through it with her mother. Anyway, after my conversation with her I told my principal that I will need to take the time off so I can be home and take care of Jamey. He was very supportive (as he has been throughout this ordeal). We really appreciate that. I can't imagine having to worry about my job on top of all of this. I feel pretty comfortable with this decision - Jamey is in pretty bad shape. He was pretty happy to be staying home.

We are hoping that a home teacher will come to work with Jamey while he is home. Meanwhile, I will work with him about 1 - 2 hours per day so he doesn't fall behind. The PPW was supposed to have this ready, but it wasn't. I feel like this has been a very contentious year with his school. I've spent more time and energy there . . . it makes me sad to think that his last year in elementary school will be so difficult. I hope the rest of the year will be better - once he's on maintenance.

Happy New Year!

We had a pretty good vacation, once Jamey came home from the hospital. We relaxed around the house for a couple of days, then went to visit my parents at their farm. It was so nice! We always have such a great time with them. We were back for the New Year because Jamey needed to get his Erwinia shot, and went to Michelle's for the night (the SIlverstones were there, too). We had a great time playing Trivial Pursuit (the WOMEN won) and eating a ton. I decided to put some whipped cream on Jamey's head. I don't think he's laughed that hard since May. Noah and Coby had a great time, too. They watched movies and played with their friends. It was one of the best New Year's evenings we've had. Coby and I spent a lot of New Year's Day with his karaoke machine (he is too cute!), while Noah spent a lot of the day reading and Jamey went to William's (and had a ball). Noah, Coby and I then watched the Michigan football game - pretty good game. David installed a new back door to the garage. What a guy!!

We will go on Monday to see a cardiologist about Jamey's low blood pressure. Today we saw an opthamologist about the orthostatic hypotension. His eyes are fine (phew . . .), although he does need new glasses. Friday and Sunday we go back for more chemo shots, then we're done for a week. After that it's MAINTENANCE!! Although I hear that maintenance is much easier than now, I also hear that it is not a piece of cake. I guess we'll see . . .

HOME!!

It's been quite a week for us. On Monday the doctors (residents at the hospital) woke us (at 2 am) up because Jamey's blood pressure had dropped dangerously low. They tried different things to get his pressure up, then called the fellow to find out what to do. It was really scary. They thought he might be getting septic, which leads to septic shock. They decided on a third antibiotic and to give him a lot of fluid. That seemed to help a lot, and his blood pressure went up. Luckily, the antibiotic seemed to knock the bug out of his system and he did not have a fever at all on Tuesday. Yesterday we were given the happy news that his ANC had gone up a bit and they allowed us to come home. YEAH!! At least he has several days of vacation left . . . We got home in the afternoon and hung out with Leora and Orly. That was definitely a nice way to spend the afternoon.

On an aside, the hospital was really great about spending the holidays there. They had gifts for the kids who were there (check out Jamey's new bike!), as well as for the siblings. They made a real effort to make sure that children didn't feel as if they were missing the holidays. Kudos.

Vacation Week, Continued . . .

Hi,

Just a quick note to let you know how Jamey is doing. He's still in the hospital. We thought we had a handle on his fever yesterday, but it returned and has continued. His ANC is WAY down, so we don't know when he'll come home. This is a pretty sorry way for him to spend his vacation. :-(

Vacation Week

Jamey went into the hospital on Friday with a fever. Today it finally broke, but he's had around 104 much of the weekend - it's been pretty miserable. The doctors said he'll have to stay there for about a week (poor thing, his whole vacation!). His blood counts are still going down, so that means he'll definitely be in there for awhile. :-(

Wedneday, December 19, 2007

Jamey woke up with a lowgrade fever today. He had a fever last Wednesday also, which is a bit worrisome for me (although the docs don't seem worried). They think he's battling some type of virus. I have to take his temperature every 4 hours, and if he continues with one, he'll get a very strong antibiotic. I hope Jamey is feeling better by tomorrow. I hope he doesn't end up in the hospital.

One of the mothers on my ALL list-serve wrote about how it's been documented that many parents suffer post traumatic stress syndrome when this is over, and I can totally see that. The ups and downs of living with this (along with the everyday stresses of life) are unbelievable. It's hard to see Jamey feeling so poorly, to constantly worry about the possibility of a relapse (because that is ALWAYS in the back of my mind) and the late-effects of the chemo, to know that there is very little I can do for him. All this weighs on mine and David's minds heavily.

Another person on the list-serve wrote this poem.

> THE LITTLEST SOLDIERS BY Cheryl Jagannathan, mom to Robby Putnam, dx'd 1/93 and still a fighter today..
>
> The medals on our chests
> Are broviacs for meds
> Helmets won't stay on
> Cause no hair is on our heads.
>
> Our weapons of destruction
> We take every day
> We fight the battle within us
> While we struggle on to play.
>
> We fight with honor and courage
> No marine could do as well
> We are only children
> Living in this hell.
>
> So bring on the medals
> The purple hearts of wars
> The gold cross, the silver star
> To place upon our scars.
>
> For we are the children of cancer
> No one has fought so hard
> But every day we struggle on
> Our life is our REWARD!

December 13, 2007

Sorry it's taken so long to post, but we're wiped by the end of the day. These last few weeks are definitely difficult (although Jamey had a couple of weeks off and they were wonderful). Yesterday he had a long chemo. We were in the clinic all day, and he got a fever at the end of the day. We were lucky because his blood counts were high, so they let him come home after giving him a very strong antibiotic. He was feeling better this morning, but dragging again this afternoon. I think part of it is that he is very nauseous, and that definitely takes its toll on him. I hope he feels better tomorrow.

It's been a terrible week for us on another front, as well. Another person who is close to us was diagnosed with cancer (this makes two people in the past month). What is going on?????

We have something wonderful to look forward to, though. The day for Jamey to begin the maintenance phase is on our calendar for mid-January (yeah!). This is a big deal because we hear it is much easier. We have also decided to go visit the Varons in Spain in March for a much-needed vacation. We've been looking up tickets (but are too nervous to buy them until Jamey is definitely declared to be in maintenance), and are VERY EXCITED about these prospects.

Happy Hannukah.

December 1, 2007

This has been such a crazy time. I took a little time off work to be available to Jamey, but he wasn't too bad for the most part. He started the steroids again on Monday, though, and they have really taken their toll. By Wednesday he was starting to feel bad. Yesterday he went to bed at 5:00, and today he could barely move. He's been very tired and his legs are killing him. I wish there was something we could do to help him, but there is nothing. The steroids are also making it difficult for him to control himself. He yells, then he feels bad about losing control. This sucks. I can't wait until delayed intensification is over and we can go onto maintenance. Everyone says it's easier.

We're very excited, though, because we think we might go to Spain over spring break and visit Eva, Todd and the kids. Something to look forward to.

Thanksgiving

Happy Thanksgiving to all. We had a good week, although we were upset that we weren't able to go to New Jersey to spend the holidays with my family. Jamey got shots on Wednesday and Friday, so we were here. He's been feeling okay this week (par for the course, since I took a few days off), although he started feeling so-so last night, and not so great today. We went to the Silverstone's house on Thursday and had a lovely time with them. Orly, Doug, Leora and Yoni came up on Friday, and we spent Shabbat with them. That was really nice - we had a great time with them. They are so fun - just wonderful. We went to Barnes and Noble last night after Shabbat ended (Jamey's favorite place), then to have some pizza.

I took this coming week off of work because we are so unsure of how Jamey might feel. He goes in tomorrow for his next round of chemo (very strong chemo), so we'll see what happens after that. I hope he is okay. He's gotten a lot so far, and it peaks 1-2 weeks after he get it, so I'm a bit ambivalent about how he'll be this week. He also starts the steroids again tomorrow. I'm not sure either of us will survive this round. They have a terrible affect on him (not just his appetite, but his concentration and personality also). At least it's only for a week.

The Week in Review

This week has been torturous. Jamey has had no energy and been feeling terribly all week. He stayed home from school with Vivienne on Wednesday and Thursday, but we forced him to go on Friday. There, he fell asleep in class, then went to the nurse to lay down. Yesterday we had the Kaminows over for Shabbat, and he could barely eat with us. Today he was supposed to play with a friend, but he was too tired. He finally got a little energy to go out, but that quickly went away and he was too tired to enjoy going out to dinner with our good friends. We feel so bad for him - he has headaches and nausea - and there's absolutely nothing we can do. On top of everything, he is going in every two days to get two shots of chemo. When we went today, he saw the injections and almost fainted. :-( I know this is only for 6 weeks, but it seems like forever . . .

To top it off, VIvienne goes back to Israel tomorrow. We will miss her so much - she's been a great source of comfort and support. Wish she could stay . . . .

Delayed Intensification

We started delayed intensification today after a two week break. The break was wonderful - Jamey had energy and was in great spirits. We were all nervous for today, knowing that Jamey wasn't going to feel well after going to the clinic. He was given 3 different chemos today, two of them injections, and a flu shot.

After the clinic we went to lunch and the bookstore, and Jamey was doing great (although he had a terribly difficult time trying to pick a book - three or four new ones just came out that he's dying for). After we picked up Noah and Coby from the bus, though, he took a dive and started throwing up and feeling horribly. Since then, he's been a basket case, too nauseaous to move. It was really difficult, in fact, to get him to take his pills tonight. I feel terrible for him - he feels as if this is a never-ending saga. When you're 11 years old, this is a lifetime.

Some days I can't believe we're living this life . . .

November 6, 2007

We got Jamey's blood counts - they look good. His ANC is up (we could've predicted this - he's back to his old self). Yeah!! This means, though, that we will start the delayed intensification phase next Tuesday. I have to say that I'm a bit nervous about this. It's supposed to be very difficult. He starts off on Tuesday with a spinal tap and some pretty heavy chemo (daunorubicin, vincristine, and some other stuff). We expect his blood counts to drop the following week. We're just counting the days until January . . .

The boys are doing well. We have our final soccer games this weekend - it's been a great season for Noah and Coby.

Picture from the Chabad Torah dedication

Jamey received a special blessing from the Rabi and we dedicated from the Sultan family a word from the Torah.

November 4th 2007

We got back from the hospital on Monday October 29th. Unfortunately we spent more time there than we had anticipated. We were there from Thursday - Monday, and it was a long and boring stay for all of us. We tried to entertain ourselves as much as possible by renting few movies, and playing some games. Jamey played with another boy who is 12 (his name is Jacob) who was also diagnosed with Leukemia (a different type). Jacob can't really leave his room and has been there for 2 months. I believe he has 4-5 more months at the hospital (at least). We played cards and they also played the Wii in Jacob's room. Despite all the two boys are going through, I think they had fun. Karen and I rotated our stay with Jamey. Karen's mom and my mom also stayed with Jamey during the day. We were so happy to come home on Monday afternoon, and we are REALLY glad this phase is over. We have about 2 weeks of break where Jamey does not need to go in for Chemo and then we will enter the final phase before we enter maintenance. It is called Delayed Intensification, which is about 6 weeks of heavy Chemo in/out of hospital with different types of Chemo. This is similar to what we went through the first 4-6 weeks and we anticipate a lot of side effects.

We are all enjoying having my mom around. She is great and the kids enjoy being with her which they do not get very often. My mom is really great and helps a lot in the hours. The cooking is superb! I missed it. Since my work is very close I go home for lunch and hand out. This weekend was busy with of soccer games. We also went to the Chabad House; they had a ceremony for a new Torah. We got to write a letter in the Torah and Jamey got a special blessing from the Rabbi there. It was nice.

I am tired now; it has been a long day. Take care.

This Last Week

It's been a week since I last wrote - sorry! I've been so tired every night that it's been difficult to start. Jamey's mouth sores are better. We were having some doubts as to whether or not he would be able to get chemo this week, but the doctor thinks it is fine. We have been worried that he will get more sores in his mouth. The sores have been really hard on him, and we are happy to see them healing. Other than the sores, though, Jamey's been in a great mood lately. It's so nice to see him with energy again!!!

This will be our last hospital stay (barring any fevers) - YEAH!!! We just want to get it over with. I'm also worried about him getting a staph infection. Children's is such a dirty hospital - absolutely disgusting. The doctors and nurses are great, but I've never been in such a disgusting place. Many of the cleaning crew do nothing. At our last stay one of the cleaning crew was watching the ball game in an empty room for two hours! Meanwhile, the bathrooms and rooms are gross. No matter how much you complain about it, it doesn't get better. All the parents complain, but nothing gets done. I'm bringing a box of disinfecting wipes so I can go over his room thoroughly tomorrow.

Orly came up for the weekend, as did Liron and Meyer. We had a lovely time with them. On Saturday I had a surprise birthday party for David. It went really well. Jamey took him out (they went to Dave and Buster's). They were supposed to call me at 8:15, on their way back, but nobody called. I tried calling David's cell, but he didn't answer. Meanwhile, I had our 20 closest friends at the house! He finally called me at 8:25 and asked us to meet him out. I gave him some lame excuse and told him to come home. He called me back a few moments later to find out why I was being so difficult, and I again told him to come home. Boy was he surprised when he finally got here! It was a great evening - one which we really needed (Michelle made the coolest cookies - they spelled out Happy Birthday David, Karen, Jamey, Noah, Coby - and it was all surrounded by stars. The cookies were covered in sparkles).

For his birthday, I made David a book with my Mac (love it!). It had pictures, and people sent him well wishes which I put in it. I then sent it to Apple and had them print up a book for him. It came in the mail on Thursday, and is beautiful. He really loved reading the kind notes everyone sent.

Hope our stay at the hospital goes by quickly . . .

October 17

It's been a little while since I posted - I've been so busy! Jamey went into the hospital last Friday. We all took turns staying with him. His friend Jano came to visit and also his grandfather Bob came by. He was very happy about that. This stay was much easier than before. To begin with, they gave him a different anti-nausea drug. He felt much better. Another thing that contributed to a better hospital stay was that Jamey bought himself a beautiful new lego set. This really kept him busy! Finally, the hospital changed Jamey's protocol, which allowed him to get out a day earlier. We were able to go home on Moday so it was shorter than the last 3 visits.

Jamey was not feeling too well om Monday, but he seemed to be doing better by the end of the day. Yesterday he started getting mouth sores, and today he came home from school and they were terrible. His mouth was very swollen, and he was in a lot of pain. We gave hime some medicine, though, and hopefully it will get better by tomorrow.

My mon is here from Israel (Viviana). She came in on Monday and staying until mid November. It is great having her around. This weekend we are having a lot of family over, which will be nice. My sister Orly + family and my niece, Liron + Boyfriend. My mom is cooking traditional Israeli and Tunisian food so it will be great weekend to eat and just enjoy.

Jamey has one more treatment at the hospital next weekend. Then he has 6 weeks of intensive treatment, the last phase before maintetance (Delayed Intensification). We can't wait to be at maintenace, where treatent will be a lot easier for him and hoepfully life can go back to normal, well as normal as it can be.

Anyway, we are looking forward to this weekend. :-)

More Pictures from the ride

More Pictures

The Ride

HE DID IT!!! David, David K., Chris, and Jeffrey rode the 100 mile Sea Gull Century Ride on Saturday. They were phenomenal. We waited for them at the finish line with the Kaminows - it was so neat to see them finishing. What an accomplishment. They are inspiring. Ellen, Rachel, and I hope to do this next year. In addition, through the generosity of so many people, David and I were the top fundraisers in the country for the Leukemia Society. People have been so wonderful. Margarita, a friend from school, arranged for a Let's Dish party for us (it's tomorrow). Everyone has been so nice.

We are having a great week. Jamey is feeling great, which is wonderful. He goes back in on Friday, and David, my mom, and I are preparing ourselves for him to be down for several days. We have only two of these treatments left. Phew! Also, DAVID TURNS 40 ON THURSDAY - he doesn't look a day over 39. :-)

Next Monday my mother-in-law arrives from Israel. She's wonderful, and we can't wait for her to arrive. It's going to be a full house here next week.