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!!!
Thursday, August 30, 2007
Tuesday, August 28, 2007
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.
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.
Sunday, August 26, 2007
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 -
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 -
Tuesday, August 21, 2007
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!).
Sunday, August 19, 2007
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.
Thursday, August 16, 2007
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.
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.
Saturday, August 11, 2007
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!!!
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!!!
Friday, August 10, 2007
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.
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.
Wednesday, August 8, 2007
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
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
Subscribe to:
Posts (Atom)
