Ben finished his second month of Maintenance. We went to the hospital after school today and he had blood drawn for his bloodwork - and he didn't even flinch and didn't need to sit on my lap. He then had another dose of Vincristine. He was nervous about it but did great!
We also found out that his numbers are wonderful. Hemoglobin, platelets and white blood count are all good! I forget the exact number of his ANC but it is around 2600...much better than the zero he had a couple of weeks ago!! He started steroids today and will take them for the next 5 days and will take the Methotrexate that he takes on Thursdays.
He gets the next month off from the hospital. We do not need to go in until the end of March when he needs to get another spinal tap.
He is feeling and looking great!!
Thursday, February 28, 2008
Tuesday, February 26, 2008
Thursday, February 21, 2008
School
Ben had such an amazing time at school today. I asked him how it was to be back and he said, "I loved it!" He has been all smiles - even while doing his homework :)
He said that he was very careful about keeping his hands clean and used his hand sanitizer regularly throughout the day.
He was just so thrilled to see all his friends and teachers. Hopefully we will continue to have more days like today!
He said that he was very careful about keeping his hands clean and used his hand sanitizer regularly throughout the day.
He was just so thrilled to see all his friends and teachers. Hopefully we will continue to have more days like today!
Back to School!
Ben went back to school today. It's a bit of a risk with flu season in full swing, but hopefully he won't catch anything . . .
Monday, February 18, 2008
Going up!
Ben had a blood check today and a visit with the doctor - the good news is that his ANC is 506. Technically no longer neutropenic (because it is above 500) but still pretty low. He can now start back up on the normal schedule of Mercaptapurine everyday and Methotrexate every Thursday. He is due for Vincristine on February 28th and that is still set to go forward. Ben wasn't really paying attention to most of the discussion (we have really been cutting back on video games but allow both boys to play their PSPs when we are at the hospital so they don't really even notice that anyone else is in the room) but he did like the news that he gets to stop the antibiotics.
We discussed when he could go back to school. We joked that it would be really great it if I could just keep him home until flu season is over but since he is so eager to get back they said I could send him on Thursday. We were so excited! I thought they might make us wait until next week or so. Of course, we should still be really careful and have the normal precautions in place and we will be avoiding public places for a couple of more days. I am really hoping the kids at school will be healthy. As we have learned, when someone else gets a cold they might need to stay home from school for a day or two but when Ben gets one he ends up in the hospital for a week and missing school for 2 or more weeks.
By the way, I need to make a comment that Ben is so awesome and brave. He had yet another blood draw today and they couldn't do a finger stick so had to draw from his arm. He said, "it really isn't a big deal" and then informed the person doing the draw that after being poked 5 times one morning last week by 3 different nurses when they were trying to find a vein to re-insert his IV that getting a blood draw is really pretty easy. The woman just looked at me and said she couldn't believe how amazing he is. He gives the nurses less trouble than the adult patients!
We discussed when he could go back to school. We joked that it would be really great it if I could just keep him home until flu season is over but since he is so eager to get back they said I could send him on Thursday. We were so excited! I thought they might make us wait until next week or so. Of course, we should still be really careful and have the normal precautions in place and we will be avoiding public places for a couple of more days. I am really hoping the kids at school will be healthy. As we have learned, when someone else gets a cold they might need to stay home from school for a day or two but when Ben gets one he ends up in the hospital for a week and missing school for 2 or more weeks.
By the way, I need to make a comment that Ben is so awesome and brave. He had yet another blood draw today and they couldn't do a finger stick so had to draw from his arm. He said, "it really isn't a big deal" and then informed the person doing the draw that after being poked 5 times one morning last week by 3 different nurses when they were trying to find a vein to re-insert his IV that getting a blood draw is really pretty easy. The woman just looked at me and said she couldn't believe how amazing he is. He gives the nurses less trouble than the adult patients!
Friday, February 15, 2008
Good News
Ben had a blood check this morning and the good news is that his numbers are FINALLY starting to go up. He is still neutropenic and on antibiotics and we will continue to be extremely careful...but it is so nice that the counts are going in the right direction. We will continue with our plans for a quiet weekend at home but Ben gets a break from the hospital until Monday. Maybe we will get really lucky and there will be a huge jump and he will actually be able to go back to school sometime next week. You never know :)
Thursday, February 14, 2008
Thursday Update
We are so happy to be home!!
Ben woke up feeling great and in a wonderful mood. Ben and David had fun playing together - they missed each other so much.
We had a little bit of a scare when Ben's temperature started to inch upward but thankfully it went right back down to 98.7 so no trips to the hospital today. I have done my best to clean everything. As usual, there has been lots of Lysol and Purell used today. I keep saying that I am just going to treat him like the boy in the bubble until his numbers start to go up. I think I am starting to drive him a bit crazy constantly taking his temperature, but I promised the doctor I would be extra diligent.
We are going back into the hospital tomorrow morning, but just for a blood check. The expectation is that his ANC will still be about the same (yesterday was around 30) but you never know. David is off of school today, tomorrow and Monday so we will just be doing a lot of playing around the house.
Ben woke up feeling great and in a wonderful mood. Ben and David had fun playing together - they missed each other so much.
We had a little bit of a scare when Ben's temperature started to inch upward but thankfully it went right back down to 98.7 so no trips to the hospital today. I have done my best to clean everything. As usual, there has been lots of Lysol and Purell used today. I keep saying that I am just going to treat him like the boy in the bubble until his numbers start to go up. I think I am starting to drive him a bit crazy constantly taking his temperature, but I promised the doctor I would be extra diligent.
We are going back into the hospital tomorrow morning, but just for a blood check. The expectation is that his ANC will still be about the same (yesterday was around 30) but you never know. David is off of school today, tomorrow and Monday so we will just be doing a lot of playing around the house.
Wednesday, February 13, 2008
Finally!!!!!
Ben is being discharged TONIGHT!!!! Needless to say, we are incredibly happy.
Thanks to everyone for all of the support. At last count, we had 66 entries on the Buddy Map. If you haven't already signed it, please scroll to the bottom and let Ben know you're pulling for him!
WOO HOO!!!!!!!
Thanks to everyone for all of the support. At last count, we had 66 entries on the Buddy Map. If you haven't already signed it, please scroll to the bottom and let Ben know you're pulling for him!
WOO HOO!!!!!!!
Tuesday, February 12, 2008
How about that Buddy Map?
Wow, less than a day and there are already 40 people who have signed the map! I told Ben and he said, "awwwwww, that's so nice of everybody!" So if you haven't already signed up, go to the bottom of the page and do it please! And tell your friends!
Ben's IV was removed last night, then several different nurses tried unsuccessfully to insert a new one. Ultimately, they decided to switch him to oral antibiotics since he's now drinking enough and doesn't need IV fluids. Hopefully they'll work as well. This was great, as Ben finally was able to take the shower he desperately needed! LOL
Ben's numbers are climbing, albeit slowly. He'll probably be in the hospital for at least a few more days. Thanks to everyone for the nice emails and comments on the blog. The support really means a lot to Ben and to us.
Ben's IV was removed last night, then several different nurses tried unsuccessfully to insert a new one. Ultimately, they decided to switch him to oral antibiotics since he's now drinking enough and doesn't need IV fluids. Hopefully they'll work as well. This was great, as Ben finally was able to take the shower he desperately needed! LOL
Ben's numbers are climbing, albeit slowly. He'll probably be in the hospital for at least a few more days. Thanks to everyone for the nice emails and comments on the blog. The support really means a lot to Ben and to us.
Monday, February 11, 2008
New Blog Feature
Our friends in New Zealand, the Whites, have a great blog about their daughter Bianca's fight against ALL here. Their blog has more bells and whistles than ours, but since I just stole one of them, we're gaining on them! LOL
Check out the "Buddy Map" at the bottom of the page, and please add yourself. It will be really neat for Ben to be able to see that he has friends all over the world!
By the way, I am taking a second night with Ben tonight due to my work schedule later in the week. Ben went to sleep very early, right after dinner. Dr. Hurvitz stopped by again and indicated that his ANC (poly) count needs to come up before he can get out of here. That probably will take at least a couple of days.
Thanks to everyone for the prayers and good wishes.
Check out the "Buddy Map" at the bottom of the page, and please add yourself. It will be really neat for Ben to be able to see that he has friends all over the world!
By the way, I am taking a second night with Ben tonight due to my work schedule later in the week. Ben went to sleep very early, right after dinner. Dr. Hurvitz stopped by again and indicated that his ANC (poly) count needs to come up before he can get out of here. That probably will take at least a couple of days.
Thanks to everyone for the prayers and good wishes.
Home tomorrow?
Maybe, they tell us. This time, Ben's doctor says so too. But we are not going to get excited yet.
His temperature is down, but it is going up and down. His counts are going up slowly. So this is all good. We'll post another update later.
His temperature is down, but it is going up and down. His counts are going up slowly. So this is all good. We'll post another update later.
Monday am update
Ben's temperature has dropped, but that's happened before so we're not exactly relieved at this point. We're waiting for results from blood and urine tests and a chest x-ray. His regular doctor should be in here soon, and we're looking forward to hearing what she has to say.
Ben was a total stud when they drew his blood.
--- interruption ---
We just got a surprise visit from one of my sister's friends, who brought some balloons for Ben. Really, really nice guy.
--- back to posting ---
The blood draw -- not only did he not cry, but he didn't even wince! We are really proud of Ben. It sure would be nice if we could get out of the hospital and get him back in school. We'll keep everyone posted.
Oh, a lot of the Fun Centers here are broken. So donations to the Starlight-Starbright Foundation (link in right margin) would be appreciated! (Sorry, I can't help myself.) :)
Ben was a total stud when they drew his blood.
--- interruption ---
We just got a surprise visit from one of my sister's friends, who brought some balloons for Ben. Really, really nice guy.
--- back to posting ---
The blood draw -- not only did he not cry, but he didn't even wince! We are really proud of Ben. It sure would be nice if we could get out of the hospital and get him back in school. We'll keep everyone posted.
Oh, a lot of the Fun Centers here are broken. So donations to the Starlight-Starbright Foundation (link in right margin) would be appreciated! (Sorry, I can't help myself.) :)
Uh oh
Ben's temperature has shot back up to 101.6. His polys (key white blood cell count) are zero. This is not good and they can't figure out what's going on. It's a good thing we're in the hospital. I'm staying here today and will post an update when we have one.
Sunday, February 10, 2008
Sunday update
We're still here! Nicole spent the night last night; tonight it's my turn. When new nurses or residents start their shifts, they tell us, "so, are you excited to be going home today?" Then they learn that we're not leaving. Good comedy.
I have completely abandoned my diet because I don't care. :)
I have completely abandoned my diet because I don't care. :)
Saturday, February 9, 2008
Bad News
Blood cultures were negative, but Ben's doctor wants him to stay another 3-4 days because he's neutropenic (doesn't have enough white blood cells to fight off infection like a normal person).
This really sucks.
This really sucks.
Home soon?
We are getting blood culture results within the next hour. If they are negative, we supposedly are going to be discharged! So keep your fingers crossed.
Just to keep things in perspective, it's not unusual for us to get good news like this and then have things "change" (i.e., the person who gave us the news was misinformed on the views of the doctors with real authority to discharge or there is a subsequent change in circumstances). So we're not going to get too excited and neither should you!
But this is good. :)
Just to keep things in perspective, it's not unusual for us to get good news like this and then have things "change" (i.e., the person who gave us the news was misinformed on the views of the doctors with real authority to discharge or there is a subsequent change in circumstances). So we're not going to get too excited and neither should you!
But this is good. :)
Friday, February 8, 2008
Friday Night Update
Today was a pretty good day. Ben was feeling much better and was much happier - we had fun being very silly much of the day which was nice because he was feeling so yucky yesterday that there wasn't much silliness going on.
Ben's fever has been down ever since we got the room up in Pediatrics so that is good. His white blood count didn't come up at all so it is still up in the air how long he will need to stay in the hospital - we have been receiving conflicting reports. Could go home tomorrow...or a week from tomorrow. It is all about what the numbers look like. I think we will have a much better idea tomorrow morning after they review the blood cultures to see whether anything has grown - so far everything has been negative (which is good). But of course, there is also the issue of the white blood count which is extremely low so even with a negative on the blood culture it is possible they will want him to stay in the hospital to receive IV antibiotics until his immune system is stronger. The good news is that we have a nicely configured room, a FunCenter and of course the wonderful nurses and doctors at Cedars to take very good care of us!
Well I am going to try to get a good night's sleep - snuggling with David and 3 cats!
Ben's fever has been down ever since we got the room up in Pediatrics so that is good. His white blood count didn't come up at all so it is still up in the air how long he will need to stay in the hospital - we have been receiving conflicting reports. Could go home tomorrow...or a week from tomorrow. It is all about what the numbers look like. I think we will have a much better idea tomorrow morning after they review the blood cultures to see whether anything has grown - so far everything has been negative (which is good). But of course, there is also the issue of the white blood count which is extremely low so even with a negative on the blood culture it is possible they will want him to stay in the hospital to receive IV antibiotics until his immune system is stronger. The good news is that we have a nicely configured room, a FunCenter and of course the wonderful nurses and doctors at Cedars to take very good care of us!
Well I am going to try to get a good night's sleep - snuggling with David and 3 cats!
Friday Morning Update
I am at the hospital with Ben (came in for a quick visit and to drop off homework before going to work). If his blood cultures don't grow tomorrow, we may be able to go home tomorrow night. Tonight it's my turn for the Cedars Sleepover Party!
Thursday, February 7, 2008
Hospital Update
David and I are in the Infusion Center with Ben and Nicole. (For those who may not remember, the Infusion Center is a place at the Cancer Institute where people come to get chemo on an outpatient basis. They have private rooms there where you can stay overnight if necessary, but you can't stay more than 24 hours.) We are still waiting for a bed to become available in the Pediatrics wing of the hospital. We expect to be here at least a few days. :(
I'll take David home later. Nicole will spend the night with Ben in the hospital.
I'll take David home later. Nicole will spend the night with Ben in the hospital.
Back in the Hospital :(
Ben is being admitted to the hospital. He's had a fever for the past several days and his ANCs are down to 60 (this means he doesn't have enough white blood cells to fight off infection, so he needs IV antibiotics). So much for maintenance being Easy Street . . .
Nicole is at the hospital with Ben. I'll leave work early today to get David, then we'll go over for a visit. Ben is actually not unhappy to be in the hospital. He was enjoying some hot chocolate when I spoke with him a little while ago, and he loves the food in the pediatrics wing where he'll be moved shortly. Plus he gets to play with one of the Fun Centers provided by the Starlight-Starbright Foundation, so it's not so terrible.
We'll post an update later.
Nicole is at the hospital with Ben. I'll leave work early today to get David, then we'll go over for a visit. Ben is actually not unhappy to be in the hospital. He was enjoying some hot chocolate when I spoke with him a little while ago, and he loves the food in the pediatrics wing where he'll be moved shortly. Plus he gets to play with one of the Fun Centers provided by the Starlight-Starbright Foundation, so it's not so terrible.
We'll post an update later.
Wednesday, February 6, 2008
Patience
Ben and I have had lots of time to hang out. Not much going on except that the medications, except for the steroids, have been put on hold for the time being while we wait for his numbers to go back up. We are starting to see some of the emotional side-effects of the steroids and of course the disappointment that he is stuck at home once again doesn't help matters. The good thing is that he is feeling pretty good.
Ben was pretty tired and grumpy this morning and I made a little panic call to the hospital because I thought he looked pale, but as it turns out his hemoglobin was normal on Monday and as the day progressed he looked much better. I think he is just fighting the final stages of the virus so we are just playing a lot of board games, coloring, reading and watching tv (there have been some disputes between the boys that caused them to lose all video games so those have been cut off for the time being). Ben's teacher has been sending home some of his schoolwork so we have been doing that as well. We have had a great time researching and figuring out what he wants to make for his Valentine's Day project - he came up with a great idea for his Valentine!
Ben was pretty tired and grumpy this morning and I made a little panic call to the hospital because I thought he looked pale, but as it turns out his hemoglobin was normal on Monday and as the day progressed he looked much better. I think he is just fighting the final stages of the virus so we are just playing a lot of board games, coloring, reading and watching tv (there have been some disputes between the boys that caused them to lose all video games so those have been cut off for the time being). Ben's teacher has been sending home some of his schoolwork so we have been doing that as well. We have had a great time researching and figuring out what he wants to make for his Valentine's Day project - he came up with a great idea for his Valentine!
Monday, February 4, 2008
Still Waiting
Well, the good news is that Ben's doctors decided that they could go forward with the Vincristine and steroids today so his Maintenance Phase can stay on track. Even better news is that even though Ben was extremely nervous about getting the Vincristine without a PICC line, because of the special numbing patch they used on his hand (and of course because of the expertise of the doctor and nurse) the needle insertion was completely pain free.
It was actually kind of funny. Ben was getting more and more nervous by the second as the doctor was having a little bit of difficulty finding a vein in the top of his hand. She finally said okay I found one and then a few seconds later Ben said, "when are you going to do it???" and she replied, "It is already in!" That certainly brightened Ben's mood!
The first blood sample that they took was no good so Ben needed to have his finger poked so they could get an accurate read on his numbers. He was very brave. Unfortunately, his white blood count has gone even lower. It is down to around 165. This means that Ben continues to be neutropenic so he will need to continue to stay home from school. According to the protocol, because his number fell below 500, we have stopped the Mercaptapurine and he cannot receive the Methotrexate. Hopefully because he is feeling much better (no more fever) the numbers will start to go back up soon. They also mentioned that the Dexamethasone (steroids) may help the numbers to go up. Not sure what the next step will be. I should find out more tomorrow.
It was actually kind of funny. Ben was getting more and more nervous by the second as the doctor was having a little bit of difficulty finding a vein in the top of his hand. She finally said okay I found one and then a few seconds later Ben said, "when are you going to do it???" and she replied, "It is already in!" That certainly brightened Ben's mood!
The first blood sample that they took was no good so Ben needed to have his finger poked so they could get an accurate read on his numbers. He was very brave. Unfortunately, his white blood count has gone even lower. It is down to around 165. This means that Ben continues to be neutropenic so he will need to continue to stay home from school. According to the protocol, because his number fell below 500, we have stopped the Mercaptapurine and he cannot receive the Methotrexate. Hopefully because he is feeling much better (no more fever) the numbers will start to go back up soon. They also mentioned that the Dexamethasone (steroids) may help the numbers to go up. Not sure what the next step will be. I should find out more tomorrow.
Saturday, February 2, 2008
Not better yet
Well, Ben had his blood checked (which he was very nervous about because he no longer has his PICC line so now they need to take it the old fashioned way) and results were not what we wanted. He is neutropenic again. This is not totally unexpected but obviously not what we had been hoping for. The nasal swabs and the cultures they started on Thursday were negative, so this is probably a virus and it has just caused his ANC to go down. We will continue to give him antibiotics and Mercaptapurine but everything else is still on hold.
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