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. :-(