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.