HOME!!

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

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

Vacation Week, Continued . . .

Hi,

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

Vacation Week

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

Wedneday, December 19, 2007

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

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

Another person on the list-serve wrote this poem.

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

December 13, 2007

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

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

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

Happy Hannukah.

December 1, 2007

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

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

Thanksgiving

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

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

The Week in Review

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

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

Delayed Intensification

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

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

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

November 6, 2007

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

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

Picture from the Chabad Torah dedication

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

November 4th 2007

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

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

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

This Last Week

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

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

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

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

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

October 17

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

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

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

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

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

More Pictures from the ride

More Pictures

The Ride

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

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

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

Coming Home

Jamey came home today. That was wonderful. He was so happy to be here, play with his legos, and hug the dog. I'm pretty happy to be home, myself. Two of these chemo treatments down, two more to go.

Mothers are pretty remarkable. I don't know how we would've survived through all this without mine. SHe's been here through everything, helping us, supporting us and Jamey, just doing everying (even laundry!). I think the dog likes her better than us now!!! (She definitely knows where her bread is buttered . . . ). Anyway, we are so lucky that she dropped her life to adjust to our needs . . . I can't say thanks enough.

David went to NY today on business. He must be so tired. We were at the hospital all weekend, little sleep, then he woke up at 3 to be out of the house by 4. If that's not enough, he will be riding 100 miles this weekend.

We've had a ton of donations from wonderful people - we can't thank you enough!! We've raised about $11,000 so far. It's amazing.

Hope this is a good week - I'll post some pictures of the ride.

The Weekend at the Hospital

Jamey went to the hospital yesterady for his methotrexate. This is really hard on his body. It's a 24 hour drip, which started at noon. By 5:00 he was wiped and feeling awful. Since then he's been dizzy and nauseous, feeling just horrible the entire time. He did feel better, though, while his friend Nathan visited him. His friends' visits really help him cope with everything. My mom stayed with him all day, with my step-father, while David and I went to soccer games (both Noah and Coby's teams won - yeah!! The boys played GREAT). As difficult as it is to be away from the hospital, it is very important to the other two that we continue to support them and be with them - and keep their lives as normal as possible. We are very conscious that Jamey's illness has an affect on the boys also, and we want to make sure that they don't feel forgotten. This can be really difficult sometimes, but we've been managing okay.

It's terrible to see your child going through something like this. You feel so helpless, wishing you could do something. It's very depressing. I know he's going to get better, but the road there is really hard. I hope he feels better tomorrow.

I'm exhausted now - going to bed soon. I slept in the hospital yesterday, David is sleeping there tonight, then I am back there tomorrow.

Take care.

This Week

This has been a pretty good week for Jamey, even though his blood counts are down. He's had energy - almost back to his old self! It's been wonderful.

Yesterday was my birthday. My girlfriends (Ellen, Michelle, Maya, and Rachel) took me out to dinner on Monday night. I think it's the first time I've been out on a girl's night since April. We had a great time - they are so wonderful. I'm really lucky that they take such good care of my family. David sent me some emails that really made my day, so it was a pretty good birthday. To be honest, I wasn't that interested in it this year.

David started building a Sukka. We hope it's done by the end of the holiday so we can eat in it. :-)

We're not sure if Jamey will be going into the hospital this weekend because his blood counts have dropped so much. Tomorrow morning I will draw his blood, then David will drop it off at the lab. They'll call us in the afternoon to let us know. If there's one thing this experience has taught us (and there have been many), it's that we need to be flexible.

We will reach $10,000 in donations to the Leukemia and Lymphoma Society this week (we have some checks we have to send) - everyone's been so generous. Thank you so much! It's going to wonderful cause.

Picture Dates Off

I'm too tired to write today, but I want to let you know that the dates on our pictures are off. The latest picture I put on here is from 9/13/07 (our very observant friend noticed this).

Jamey's doing better - had a great sleepover with his friend Jordan, and spent all of Yom Kippur with his friend. It's good to see him with some energy and happy (especially since we go back on Friday). His mouth is also doing better, and the sores seem to be clearing up.

We just heard that our niece is getting married in January, and I hope that we will be able to make the wedding (NY), We're very excited for her!!!

Take care,
Karen

Back Home

We came back home on Tuesday. Jamey was so happy to be here! He went right to his room and played with legos (his favorite all-time toy) for a very LONG time. I think the hardest part of going to the hospital for Jamey is the lack of privacy. In the first place, we are always with him. He is never alone. Second, the bathrooms don't have locks, etc. It's really difficult for him. He's home now, though, and that makes him happy.

His body is feeling pretty good, except that Jamey has terrible sores in his mouth from his braces right now. The chemo that he took in the hospital has the tendency to give mouth sores. I think his cheek and gums are so tender (the cells in them), that his braces are cutting into his mouth. Poor thing! He's having a really difficult time eating and talking.

In spite of all this, Jamey is keeping his spirits up right now. He's such a good guy.

We met a couple of other families while we were in the hospital. It just reinforces my knowledge that we are SO LUCKY. One family came in and their son had been misdiagnosed at one hospital, then diagnosed corectly with leukemia several days later at another hospital. Because of all the delay, the child's white blood cell count was very high. That's more difficult to cure. Jamey was diagnosed by a BRILLIANT emergency room doctor at Shady Grove Hospital very quickly.

Another family also came in this past weekend. Their son goes to the school where Jamey will go next year, and their son was also diagnosed with leukemia. They were waiting to see what kind of leukemia it is. ALL is the easiest leukemia to cure, so we were hoping the boy has that kind. Unfortunately, he doesn't. He has the more aggressive type of leukemia, which means that he needs to stay in the hospital for the next 6-8 months, and perhaps get a bone marrow transplant. That is really difficult for the child.

Our hearts and prayers go out to these lovely families. We hope all ends up well.

Our Weekend at the Hospital

Happy New Year!

I'm glad to report that we had a wonderful Rosh Hashana. We broke bread with friends both nights, and had a lot of fun. Jamey didn't throw up (yeah!). The dinners were very laid back and relaxing. We also went to Shul. The rabbi did a special prayer for Jamey, which was nice. While David was in the sanctuary, I took the kids to children's services and Jamey went to the youth services. It was great.

Yesterday Jamey went to the hospital for his chemo treatment. It is the high-dose methotrexate one - we don't know how long it is for because it depends on his body and how quickly he can expel it. At the hospital he has to get an infusion for 6 hours before the chemo. We were there by 9, but the infusion didn't start until 5. This was very frustrating because now he'll have to spend an extra day in the hospital. In addition, when they took his weight we saw that he has lost 6 pounds in the last two and a half weeks. I'm not terribly worried about that because he started eating again (and not throwing up).

I have never seen Jamey so depressed. It's really horrible (even books don't cheer him up!). As soon as we left fot the hospital yesterday, he totally shut down. I know it's really hard for him to be away from home. Home is his favorite place in the world, and the hospital is probably his least. A few of his friends visited him (thanks, Jamo, William, and Ale). That, at least, helped him some.

Today my mom spent the day with him, while David and I went to Noah's and Coby's soccer games (they did great - yeah!!). They were exciting games - definitely a pleasure to go see.

David is spending the night there (I spent last night). We trade off -

Anyway, I'm too tired to write anymore tonight. Take care.

Our Weekend

Well, Jamey is still throwing up. We thought he was getting better, but he's still throwing up every night. He's lost a bunch of weight. Even though he's still throwing up, he seems to be getting better (stronger) daily. His blood counts today were up, which means he'll go into the hospital on Friday for his treatment. He definitely isn't happy about that. He hates gong to Children's - it has such bad memories for him (no fault for them, it's just where he was diagnosed).

It's funny, but through all of this Jamey is still a typical 11 year old boy. He came home today with a birthday invitation (a sleepover), and he was so happy. His first question was whether or not he'll be in the hospital that week. When I told him he could go, it just made his day.

Even though Jamey wasn't feeling great, we were still able to have a good weekend. He's so positive. As usual for us, Saturday was soccer day. This was Coby's first real game. He scored 3 goals (final score - 4-1)!! He was so awesome! It was also a big day for Noah. It was the first game in the Classic league. He did amazing, also - they won 6-4. His team is playing against older teams, so we were doubly happy. Both of the games were really exciting.

Jamey spent Saturday with William. He was subdued, with little energy, but still had a really good time. On Sunday he went to the movies with his friend Sarai, then another friend (Jano) came over. It was a great day for him. He had a good day at school today also. It's the little things in life . . .

September 7, 2007

It's now been almost two weeks since Jamey started feeling so horribly, and we are still waiting for it to end. As of tonight he is still throwing up - feeling horrible. He stayed home from school today because he was feeling so badly. I stayed with him in the morning, then David came home (he worked from home) for the afternoon. He was feeling better for a bit, but started throwing up after dinner again. He is in such a bad way.

I spoke with the doctor last night because we are getting so worried. It's been a long time since Jamey's been able to hold down any food or have any energy. She said that this is normal when the blood counts are so low. She thinks that his counts are going up, though. That should help make him feel better.

We are now busy getting ready for tomorrow's Texas Hold'Em funraiser (we are holding it here). We also have our first soccer games of the season (yeah!). Coby's game is in the morning, and Noah's is in the afternoon. I know the boys will do great - and we always have a fun time at the game.

For now, though, we just wait for Jamey to feel better . . .

I hope he has a decent weekend.

Labor Day Weekend

It's been a difficult holiday weekend for Jamey. He was feeling sick all week, and he wasn't better by yesterday. We feel so bad for him - he's been throwing up constantly since last Tuesday. Yesterday he threw up in the Barnes and Noble parking lot, then again at home. At least he had a good afternoon playing with his friend, Daniel.

We are busy getting ready for our Texas Hold'Em fundraiser for the Leukemia Society (next Saturday), and the bike ride. We have raised about $7500 for the Society so far, which I am thrilled about. It is because of their work that Jamey's chances are so good.

Tomorrow we go to the doctor and get blood counts to see when he can start his next phase of treatment. You can tell that Jamey really wants to eat and feel good, but his body is not cooperating this week. He went through a similar experience last time he finished with a phase of treatment. We are hoping that next week his body will bounce back and he will feel really good week before he starts treatment aagin.

I need to get ready for my bike ride. I am up to 57 miles which takes me about 4 hours, but I need to be able to do 100 miles. From what I am told, if I can do about 75 miles, then I should have no problem doing 100. Whatever it is, it could not possibly be as bad as what Jamey feels. I have 4 more weeks of ride times. Soccer games start next week for Noah and Coby, so my weekend time is going to be even more busy with their games. I will need to find time to fit for my practice rides.

Rosh Hashana is almost here and it will be a good time for us to pray for Jamey to have a sweeter year. This is my favorite time of the year (also love the spring/Passover) when the weather starts to get a little cooler. I love walking to the synagogue and running into friends. Evertything seems to stop during this time of year, like someone is taking count and inspecting what we have done in the past year. This is a good time to look back reflect on the previous year, and make changes for next year to be sweeter. This is going to be a special Rosh-Hashana, as went through a lot this year. All we need is for Jamey to recover and get back to being a kid again. He is a good and strong kid and we know that G-d is watching over him. He will get better, the road there is just tough.

That is it for now. Are only wish this year for our family is to start healthy, and for Jamey to contine with his recovery.

We wish you all a happy new year. May this year be sweet and all your wishes will come true.

David and Karen

August 30, 2007

Today Jamey stayed home from school because he hasn't been feeling very well. He has barely eaten since Sunday and, anyone who knows Jamey can attest to this, that is unusual. He LOVES food. It's a good thing that he eats healthy because he loves to eat (you cannot possibly imagine what it was like with him on steroids - they make you so hungry). I'm not worried about him not eating as long as he drinks and doesn't lose too much weight. He stayed pretty sedentary for the morning, but he was feeling better by the afternoon so we went for a (very) short bike ride, then he decided to tgo on my treadmill for a little bit. He started re-listening to a book on my ipod - Peter and the Starcatchers (great book by Scott Ridley and Dave Barry), and he was busy with that for much of the day. Jamey and I had a great time together.

I also dropped off his Bar-Mitzvah agreement today (wow - 2 years away!!). I just can't believe it!! He will be Bar Mitzvahed on Seotember 5th, 2009. Now I have to start looking for everything else . . .

I think he really needed a day of rest because he was much better by tonight. It seems that after four weeks of chemo his little body gives out. It's happened every time. We are anticipating him going into the hospital on September 14. I plan to send him to school tomorrow - as long as he's feeling okay.

I had a great time with Noah and Coby after school today. They're so fun - they love to liisten to music and dance around. We have a great time singing and dancing.

Noah had a great soccer practice today - he's doing so well, and Coby had a wonderful day. They have been wonderful!!!

School Started

The boys started school yesterday. Jamey and Noah both came out of school saying they have the best teachers there. Coby was also happy about his day.

Jamey had his chemo yesterday. It went okay. I was a bit worried because he has some bruising on his arms and legs, but the doctor said we don't have to worry. His ANC, though, was very low. This means he's very prone to getting sick. Poor thing!

Today he is feeling pretty poorly. I picked him up from school, then he went to tutoring (to get ahead in math so he doesn't fall behind when he misses school), where he did fabulously. We have a wonderful math tutor for him - he already loves math, and she just makes it more so. Anyway, he came home from tutoring, read for about one hour, then started throwing up. He couldn't eat dinner, so he just lay on the couch for a little while. After that he took a bath and went to bed. We're afraid he's getting a fever, which will mean that he has to spend a few days in the hospital (which he HATES). The nurse told us this could happen with such a low ANC. We'll keep checking his temperature tonight and tomorrow. The only thing that made him feel better was a book my mom had sent him.

We feel so bad for him - I hope he's better tomorrow.

School Tomorrow!!

Tomorrow we start school - how depressing that the summer is over. The boys and I went on Friday to their open house, where they met their teachers. I have a great first impression of their teachers. I had met Jamey's teacher last year, and he's lovely. We had a good meeting, and I know that this will be a great year for him. The other boys have first year teachers; both seem enthusiastic and nurturing. I'm sure that they will each have an excellent year.

Jamey's had an okay week - we think that the chemo is catching up with him. He was a bit tired and nauseous on Friday and Saturday. Today he had a great day, though. He spent the day with some of his closest friends - here and at the pool. His friends have a great knack for making Jamey forget that he doesn't feel well.

On Wednesday night my sister-in-law and niece and nephews came up and we went to dinner with them. It was really nice to see them, and they're coming up again tomorrow night. Jamey also spent that night at his friend, William's house, and had an awesome time. I think this is the 2nd time he's slept over another house since we found out about his leukemia. It's so difficult to let him go, but I know that I have to let him be a kid.

We went to the farm for the day yesterday - my aunt and cousins were there. It was wonderful to spend time with them and my parents. We had a great water fight with Bob (my step-father). Jamey was tired, but he really enjoyed going. We all wish we could've spent more time with them.

Tomorrow Jamey finishes the consolidation phase of his leukemia treatment. It's hard to believe that we've gotten through this much already - it's gone by so slowly and quickly at the same time. We will have a better idea of when he will actually start the next phase when we get his blood counts from tomorrow. Because he hasn't been feeling well, we think his blood counts must be down right now. He will be able to start the next phase when his ANC (basically the body's ability to fight infection) rises above 750 (a normal person has 5,000+). His history has been that it takes three weeks, but we don't know if he'll follow that. As I think I've said, this next phase will put him in the hospital for several days every other week for eight weeks. That is going to be really tough on Jamey because he HATES going to the hospital. It has all sorts of bad memories for him. My mom ordered him some books he really wants to read, though, and we hope that will cheer him up. We will take him in on Friday mornings, and hope that he will come out by Monday. My guess is that this will start on the Friday of Rosh Hashanah. Either that or Yom Kippur. We just hope that he won't have to be in the hospital when David is doing his 100 mile ride. Soon, though, I'm sure we'll see a light at the end of this tunnel . . .

Thanks for reading -

August 21, 2007

Yesterday Jamey went for his chemo - he had vincristine, which is given to him through his broviak, and PEG asparagenese (two shots, one to each leg). About an hour or so after we left the hospital, Jamey started itching and having hives all over. It was obviously an allergic reaction to the PEG (many people develop an allergy to this). We went to Target to get some Benadryl, then went to Nighttime Pediatrics. They were wonderful there - they took him right away and made sure he was breathing fine (which he was). I have always had good experiences there, and last night was certainly no exception. Today I ran him to take blood at the clinic. They need to look at his antibodies and make sure that his body is not neutralizing the asparagenese. If that is the case, we're not sure what will happen because he won't be able to take that chemo medicine. This is worriesome, but we won't find out for another week.

Anyway, he seems fine - no worse for the wear.

School starts on Monday :-(. I feel happy, though, that he got a really good teacher. When I saw Sr. McDonald last year, I could tell he was a kind, compassionate, and intelligent teacher. I know Jamey will have a good year with him. Noah and Coby each got first year teachers, but I have high hopes. We will meet the teachers on Friday at the open house.

Leora leaves us tomorrow, which is very sad for us. She's been a wonderful help - and amazing to have around. We will miss her!! (we had a going-away strawberry shortcake for her today - yum!).

Our Week

We spent the week at my parents' farm - it was wonderful. It is probably my favorite place on earth to visit (the boys, too). My parents took great care of us and we were able to relax. Jamey started learning how to drive, and we played a lot of bocci ball and croquet (the boys are quite good). I was very sad to leave on Friday. We were also lucky to see my sister, brother-in-law, and their beautiful baby. We haven't been able to see them since he was born in November. We'll go back next weekend to see my cousins and aunt. :-)

All in all, it was probably one of the best weeks of the summer (the boys definitely agree with me on this). Thanks, Mommy and Bob!!!

Yesterday we went to the Mall in DC with our friends, the Kaminows, and had a FABULOUS time. We got lunch, walked around, and just had a great time. The boys were happy to see their friends, and so were we.

Today our niece, Leora, came to help us out until Wednesday (she'll babysit the boys while I go back to work). She's amazing - they boys were so happy to have her come because she's fun and loving, and they really enjoy being with her. Our other niece, Leron, sent them a Wii (which they got this morning), and that was the ABSOLUTELY MOST EXCITING THING IN THE WORLD. They spent the morning with that (it's a lot of fun), then we went to play miniature golf and to a movie. It was a nice way to end the summer - a great family day.

This morning David went for a 50 mile ride with David Kaminow - in training for the October 6th 100 mile ride. You can check out our fundraising updates at http://www.active.com/donate/tntnca04/tntncaDSultan.

Tomorrow Jamey gets chemo - two shots in the legs and one intraveneously. I hope he feels okay by Tuesday.

Last night David and I spoke with the doctor about Jamey's next phase of treatment. We're really worried about him having to spend so much time in the hospital (four or so days every other week), and the side effects of the medicine. It can do damage to the liver, heart, and kidneys, in addition to other possibilities. It's really scary. I'm worried that Jamey will get depressed spending so much time in the hospital (he hates it there), in addition to how the medicine itself will affect him. We are also worried that he will have a relapse at some point, even though we know that his odds are excellent and that he is doing wonderfully. Keep him in your prayers and thoughts - it helps.

Some More Pictures

Great Hair

August 16th 2007

Hi Everyone!! I wanted to post some pictures of us. We will continue to post more as time goes by.

It is a difficult time in our lives but we will get through it as a family. Karen is great; always takes care of everything; she is awesome!!. She has been with the kids all summer and it made things easier for us. I can't image going through all of this if she was working full or even part time. Karen's mother and father (Ruth and Bob) have been very supportive and really helped us a lot. My sister Orly has been a great support for all of us especially for me. It is hard not having your immediate family next to you in such difficult time but I keep in touch with everyone back in Israel weekly. I try to spend as much time with Karen and the kids and keep a normal schedule at work so I can be at home to help. There is a lot to do. Jamey has good and bad days but he is truly amazing. Always with a sense of humor. On Saturday night Jamey played a trick on us at the dinner table. He purposely left the top of a salad dressing open so the next person to use it will spill all over their plate (he learned it from me). Noah picked it up to put some on his salad and he shook it and the dressing went everywhere. He loves practical jokes. Last week he had a lot of energy and pretty much had no major side effect. This week he was not feeling well few nights. Karen and the boys are at the farm this week so I took Wednesday off to spend the day with them. The boys got to ride on a mule and played games. Bob took Jamey to ride the mule by himself. I have not seen Jamey so excited for a long time. He felt more responsible and mature for his grandfather to let him drive by himself. They boys really loves the farm and so do Karen and I.

Jamey has some intensive treatment coming up next month. He is part of a study and we are debating what to do. There are serious side effects with the medicine he is about to take. Per the study he need to take a very high dose of the medication and needs to be at the hospital for few days. We are trying to talk to various friends for advice.

My mom is coming from Israel to stay with us for 4 weeks. We are looking forward to that. Karen starts school next week and we need to adjust to that. The kids are back in 2 weeks and that will be even bigger adjustment.

Anyway, that is all for now.

August 11, 2007

I wasn't going to write tonight, but it's a bit therapeutic for me, so here I am. We had a great day - Jamey spent much of it with his friend William, who is sleeping over. I'm so glad that he is feeling well.

Today we went to the pool with a wonderful friend, Michelle, and her kids, and we were talking about the last few months. Every day I relive going to the hospital, then calling David, my mom, Ellen (who came over and watched the other kids so David could come to the hospital - thank G-d), then everyone else when the morning came. I still can't believe that this is our life - our Jamey - and that he has to go through so much. I am constantly waiting for the other shoe to drop - hoping that he will stay in remission, but knowing that it is possible that he doesn't. Every week when he gets his blood tests, I wait with bated breath until the results come back that he is still okay. It's impossible to ever completely relax. In my mind I know that he is going to be fine (and I truly believe it with every fiber in my body), and I am very positive (and so is Jamey). The newness of it, though, is still too fresh in my mind - and we're still going through so much on a daily basis.

This experience has certainly taught me a lot, though. I have really treasured this summer with the kids. Usually by the end of the summer I am thinking that it is time for the kids to go back to school - feeling that they are getting antsy (and so am I), but this year I feel differently. I am really dreading going back to work (which is strange because I enjoy my job), and I am dreading the kids going back to school. I know part of it is because I will no longer be with Jamey all day every day (which makes me a bit nervous), and part of it is because the boys, David and I have really enjoyed being with each other so much.

This experience can pull a family apart or pull them together. We are certainly getting closer - continuously bonding with each other. I feel that this is not only true with David and the kids, but also with my family and David's family, as well as with our friends. Everyone has done an incredible job of helping us and supporting us. All of that helps keep us going. Thank you!!!

The Week in Review

It's been a pretty good week for us, overall. On Monday Jamey had a long chemo (Cytoxin). He had to have an IV flush for two hours before his chemo and four hours after so the chemo doesn't destroy his kidneys. David and I are also giving him two chemos at night - one through his broviak (central line to a vein) and an oral one. He was very tired on Monday and Tuesday, somewhat on Wednesday, but Jamey perked up on Thursday and Friday. We went to the pool, movies, etc., and had a lot of fun. We had a really nice Shabbat tonight - one of his good friends joined us.

On Monday the doctor let us know that Jamey will be in the hospital for several days every other week (for eight weeks), beginning the middle or end of September. That will be difficult, but we will make the most of it and bring games, legos, etc. to the hospital. We plan on doing it Friday through Monday so his school won't be disrupted.

He is still in remission. :-)

Thanks to all of you who have written - we really enjoy the emails and comments.

August 8, 2008

Today David and I decided to start a blog about Jamey's leukemia. It's been ten weeks since he was diagnosed, and it's gone by very quickly and very slowly at the same time. I don't think we could've made it (and stayed somewhat sane) without the tremendous amount of support that our family, friends, and community have given us.

I will start at the beginning for those of you who don't know our history. On May 7th I took Jamey to the pediatric emergency room at Shady Grove Hospital because he had a terrible pain in his neck. They took some tests there, and a very astute doctor (Dr. Orenstein) told me he thought that Jamey might have leukemia. From there, Jamey, David, and I went to Children's Hospital (at 3:00 am), where the diagnosis was confirmed. We are so very lucky that our doctor at Shady Grove was able to make the diagnosis because the leukemia had apparently just started with Jamey. This helped him with a very good prognosis.

For the next week, poor Jamey had to deal with needles, a surgery to put a port in his body (to put the chemo in and take blood out), and his first chemo treatment. In addition to this, he had to face his own mortality (at 10 years old). It was horrible. None of us could wrap our brains around the fact that Jamey has cancer (we are still struggling with it). We were lucky, though, to have so many visitors to keep him busy so he couldn't focus on everything they were doing to him. One day he commented to us that he knew he was going to get better because he had so many people who loved him. His brothers sent him pictures and came to the hospital a lot, as did his teachers from Rock Creek Forest.

Since then, Jamey has gone through weekly chemo treatments. We were going to Children's Hospital in DC for a while, but started going to the outpatient clinic in Rockville this week. That was a good decision because our stress level went down a lot. As we would go to the hospital, there was a discernable change in Jamey. He would shut down - it represented a terrible place for him. He did not feel that way when we went to the Rockville clinic.

The chemo treatments have been hard for Jamey, although he has taken it all with a positive attitude. He throws up a lot at night, and doesn't feel well much of the time. He is trying really hard to do what is right, even though it doesn't always feel good to him (certainly the medicines don't). In addition to the chemo he has to take at the hospital, he has two chemos at home that I am giving him. One is a pill, and the other is intraveneous. It's a lot for a little body.

Watching him go through all of this, I can really say that Jamey is an amazing kid. He is strong, determined, and has a wonderful sense of humor, even in the most difficult of situations. I couldn't be more proud.

Noah and Coby are doing wonderfully. When all this started, David and I made a decision that we would try to keep their lives as normal as possible. I think we are being successful. Noah made the Classic soccer team (yeah!) and will continue to focus on that, and Coby will start his turn at soccer in the fall. They have been very understanding about our focus on Jamey; Noah likened it to when he had his tonsils out and everyone focused on him. They have been very flexible, going with the flow when necessary. Coby even spent his birthday evening at the hospital happily - wanting to be with Jamey very much (who was in for a fever). They are just wonderful.

I will try to update this blog weekly (or bi-weekly) so you can see his progress. Please add your comments, etc., if you want.

Take care,
David and Karen