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 . . .