I have been delaying putting up another post as I didn't want to move the cute pictures down...so if you haven't seen them yet be sure to scroll down!
There actually isn't much to report that is new. Ben finished another big week receiving chemo Tuesday through Friday. His attitude has stayed extremely positive and he doesn't give me any grief about the daily trips to the hospital. David has also tagged along all week and they always look forward to the great nurses and of course playing video games on the Fun Center that we drag into the Infusion Center from the playroom. Ben feels great and luckily so far hasn't had the negative side-effects that we had worried about. I have had a few people ask if Ben has lost his hair - so far his hair has thinned but most of it is still there. We did find out yesterday that Ben's blood count numbers are down, specifically his white blood count. This is normal due to the chemo and just means that we need to remain diligent in our fight against germs and bacteria.
The upcoming week should be relatively quiet hospital-wise. The only big day is Tuesday. As David has been showing some signs of stress from this whole ordeal I am keeping him home from camp for the next few weeks so that he can get some extra Mommy time and if Ben is still feeling great we will certainly plan some little adventures and playdates.
We are taking advantage of Ben's energy and have planned another fishing outing for tomorrow - this time I am invited! Scott has scoped out what looks to be a great lake that is not too far from here and has already reserved our boat. Watch out fish!!
Saturday, June 30, 2007
Wednesday, June 27, 2007
This Blog is Worthless Without Pics
OK, so some of you have never seen Ben and David, eh? OK, here are some pictures. From the top:
1 - Ben and David at the beach in Hawaii. Ben is on the bottom.
2 - Ben with our cats, Zorro (black) and Geronimo (seal point with mittens and blaze - yes, those are technical cat terms!).
3 - Ben (left) and David (right) with a big snake.
4 - From this past weekend, Ben and David with the largemouth bass Ben caught. I'm in the middle. You can see that Ben's face is still pretty puffy from the steroids. Thankfully, the puffiness is going away!
OK, you happy now?
Tuesday, June 26, 2007
Tuesday
Another spinal tap and day of chemo down and Ben did great again today.
Although we were nervous about having the first spinal tap without Daddy around, due to the awesome nurses and doctors at Cedars the day went by without any problems. Ben had the spinal tap in the morning and then after he was awake and able to walk we went and had a nice lunch together. Poppy joined us in the playroom in the afternoon to wait for our appointment in the infusion center (and Ben repeatedly beat Poppy without mercy at the Nintendo games).
Ben was pretty tired and grumpy by the time we got home but that is to be expected after his long day. We are still pretty happy that the side-effects of the medications have been pretty minimal. We will be at the infusion center the next three days so I will give more updates as the week progresses. We are also expecting some results from blood tests taken today to see how his body is reacting to the drugs so we will let you know if we learn anything interesting!
Although we were nervous about having the first spinal tap without Daddy around, due to the awesome nurses and doctors at Cedars the day went by without any problems. Ben had the spinal tap in the morning and then after he was awake and able to walk we went and had a nice lunch together. Poppy joined us in the playroom in the afternoon to wait for our appointment in the infusion center (and Ben repeatedly beat Poppy without mercy at the Nintendo games).
Ben was pretty tired and grumpy by the time we got home but that is to be expected after his long day. We are still pretty happy that the side-effects of the medications have been pretty minimal. We will be at the infusion center the next three days so I will give more updates as the week progresses. We are also expecting some results from blood tests taken today to see how his body is reacting to the drugs so we will let you know if we learn anything interesting!
Monday, June 25, 2007
Monday
I just thought I would give everyone a quick update. Specifically, Ben is feeling great! Although we have been warned that there is a cumulative impact of the chemo drugs he is receiving...so far, so good! He has been feeling great and up for almost anything. Yesterday he was even able to go fishing with David, Scott and his Poppy (otherwise known as my Dad). Ben was the only one who caught a fish (a nice largemouth bass) but they all had a terrific time and I am sure there will be many fishing trips planned in the future.
We thought we were going to have to go in to the hospital for a short visit today but we have been told that they can take care of the tests they need to do tomorrow. Tomorrow Ben will have another spinal tap and more chemo - and chemo the rest of the week. Since we have the day off today we are going to pick David up from soccer camp early and go have a special lunch and then special ice creams and then who knows!
Sadly, Scott needs to go out of town for a funeral but I will try to get a post up tomorrow evening to let everyone know how Ben did.
We thought we were going to have to go in to the hospital for a short visit today but we have been told that they can take care of the tests they need to do tomorrow. Tomorrow Ben will have another spinal tap and more chemo - and chemo the rest of the week. Since we have the day off today we are going to pick David up from soccer camp early and go have a special lunch and then special ice creams and then who knows!
Sadly, Scott needs to go out of town for a funeral but I will try to get a post up tomorrow evening to let everyone know how Ben did.
Friday, June 22, 2007
Friday Afternoon
I left work early and took Ben to the Infusion Center. Nicole stayed home with David. Blood counts are OK and he got his cytarabine and some other stuff without a hitch. The PICC line and video games are a real blessing!
The NHL draft is tonight, and we are expecting great moves from Dean Lombardi, the LA Kings' general manager. :)
The NHL draft is tonight, and we are expecting great moves from Dean Lombardi, the LA Kings' general manager. :)
Intensified Consolidation
OK, sorry for not posting much lately. I've been trying to focus on work and Nicole has been spending lots of time at the Infusion Center with Ben (and dealing with bugs in the house and a broken air conditioner!). Anyway, here are some details on the next stage of treatment.
First, a little overview. There are five phases to Ben's chemotherapy. In chronological order, they are Induction, Consolidation, Interim Maintenance (IM), Delayed Intensification (DI) and Maintenance. We just finished Induction and are now in the Consolidation phase. The study we are participating in breaks the kids down into four groups based on the treatment they'll get during the middle three phases. Group I is getting standard treatment throughout. Group II is getting intensified Consolidation and standard IM and DI (Ben is in this group). Group III is getting standard Consolidation and augmented IM and DI. Group IV gets intensified Consolidation and augmented IM and DI. (Don't ask me the difference between "intensified" and "augmented." Both mean "more"! :)) The idea is to determine whether more treatment at the different stages results in a better overall prognosis.
One thing we sort of glossed over before: we are not at all out of the woods yet. You see, while the remission rate is better than 90% when the kids first get treated, the leukemia comes back after a while in a lot of the kids (less than 50%, but still a lot of the kids). The remission rates during the second treatment are not nearly as high. So this study is not just about getting the 90% rate up, but also getting the reoccurrences down. The doctors really have no idea which of the four protocols is best, but Ben would have received either Group II or Group III (or some hybrid of the two) had we not done the study.
OK, so here is what Ben will get during Intensified Consolidation:
Cyclophosphamide (via PICC line), Days 1 and 29.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682080.html
Cytarabine (via PICC line), Days 1-4, 8-11, 29-32 and 36-39.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682222.html
Mercaptopurine (by pill), Days 1-14 and 29-42.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682653.html
Vincristine (via PICC line), Days 15, 22, 43 and 50.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682822.html
PEG Asparaginase (these are the giant shots in the thighs), Days 15 and 43.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a695031.html
Methotrexate (via spinal tap), Days 1, 8 and 15.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682019.html
He also is getting lots of drugs to control side effects, like antinausea drugs.
The cyclophosphamide (aka Cytoxan) has been interesting. It is a mustard gas derivative (!) which is really hard on the kidneys. So Ben has to spend a long time in the Infusion Center to get it -- they hydrate him for a few hours, then give him the drug, then hydrate him again and test his urine to make sure he's OK before they send him home.
It is no fun getting all of this treatment, and we could not be prouder of Ben. The treatment is made much easier by his PSP, the Fun Centers provided by the Starlight Foundation, the playroom and the Child Life Services staff at Cedars. So later on I'm going to hit all of you up for donations again. The ones to pick for these purposes are the Starlight Foundation and the Cedars Pediatric Hematology-Oncology Fund -- links in the right margin. I'll post pictures and stuff in a later post to try to soften you all up, but I think this is enough typing for now.
Thanks again to everyone for your continued good thoughts, prayers and support.
First, a little overview. There are five phases to Ben's chemotherapy. In chronological order, they are Induction, Consolidation, Interim Maintenance (IM), Delayed Intensification (DI) and Maintenance. We just finished Induction and are now in the Consolidation phase. The study we are participating in breaks the kids down into four groups based on the treatment they'll get during the middle three phases. Group I is getting standard treatment throughout. Group II is getting intensified Consolidation and standard IM and DI (Ben is in this group). Group III is getting standard Consolidation and augmented IM and DI. Group IV gets intensified Consolidation and augmented IM and DI. (Don't ask me the difference between "intensified" and "augmented." Both mean "more"! :)) The idea is to determine whether more treatment at the different stages results in a better overall prognosis.
One thing we sort of glossed over before: we are not at all out of the woods yet. You see, while the remission rate is better than 90% when the kids first get treated, the leukemia comes back after a while in a lot of the kids (less than 50%, but still a lot of the kids). The remission rates during the second treatment are not nearly as high. So this study is not just about getting the 90% rate up, but also getting the reoccurrences down. The doctors really have no idea which of the four protocols is best, but Ben would have received either Group II or Group III (or some hybrid of the two) had we not done the study.
OK, so here is what Ben will get during Intensified Consolidation:
Cyclophosphamide (via PICC line), Days 1 and 29.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682080.html
Cytarabine (via PICC line), Days 1-4, 8-11, 29-32 and 36-39.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682222.html
Mercaptopurine (by pill), Days 1-14 and 29-42.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682653.html
Vincristine (via PICC line), Days 15, 22, 43 and 50.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682822.html
PEG Asparaginase (these are the giant shots in the thighs), Days 15 and 43.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a695031.html
Methotrexate (via spinal tap), Days 1, 8 and 15.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682019.html
He also is getting lots of drugs to control side effects, like antinausea drugs.
The cyclophosphamide (aka Cytoxan) has been interesting. It is a mustard gas derivative (!) which is really hard on the kidneys. So Ben has to spend a long time in the Infusion Center to get it -- they hydrate him for a few hours, then give him the drug, then hydrate him again and test his urine to make sure he's OK before they send him home.
It is no fun getting all of this treatment, and we could not be prouder of Ben. The treatment is made much easier by his PSP, the Fun Centers provided by the Starlight Foundation, the playroom and the Child Life Services staff at Cedars. So later on I'm going to hit all of you up for donations again. The ones to pick for these purposes are the Starlight Foundation and the Cedars Pediatric Hematology-Oncology Fund -- links in the right margin. I'll post pictures and stuff in a later post to try to soften you all up, but I think this is enough typing for now.
Thanks again to everyone for your continued good thoughts, prayers and support.
Tuesday, June 19, 2007
Country Kids with Cancer
As much as I'd like to focus on the handful of charities we've picked out, I found this one today and thought it was worth pointing out. Its focus is providing financial support to the families of pediatric cancer patients who have to travel more than 100 miles to get treatment. You can get information here:
http://www.countrykidswithcancer.com/information.html
http://www.countrykidswithcancer.com/information.html
The Next Phase Begins
We are at the PICC Center this morning for the start of the next round of festivities: Consolidation. He's getting intrathecal methotrexate this morning (by spinal tap -- he gets sedated for it), then he'll get a bunch of new drugs at the Infusion Center this afternoon. I'm here for the spinal tap, but I'm going to work and leaving the afternoon stuff to Nicole.
I'll post the details of what this phase entails later. It will be a rough eight weeks and there is a good chance Ben will lose his hair. But we're ready for it, I think.
I'll post the details of what this phase entails later. It will be a rough eight weeks and there is a good chance Ben will lose his hair. But we're ready for it, I think.
Monday, June 18, 2007
Decision Made
Well, we made our decision. After a lot of discussion with doctors, nurses and each other we decided to put Ben into the clinical trial. I called the nurse this morning and she randomized Ben into the treament arm he will be on - which is called the "IS" Study Arm. Ben will have an intensified Consolidation phase, which is the phase that starts tomorrow. The rest of the stages (Interim Maintenance, Delayed Intensification and Maintenance) will all be standard treatment. This is one of the two study arms he would have likely been placed on even if we hadn't participated in the study.
I am content with our decision...but am nervous about the next stage of treatment which lasts for 8 weeks. Ben will be getting three new drugs which may have stronger side effects than what we have had to deal with so far. They told us that likely reactions are vomiting, hair loss and loss of appetite. There may also be some impact on his blood counts so we will need to continue to be diligent about exposure to germs. We will need to spend quite a bit of time at the infusion center (4 days a week) for drug transfusions so I am sure he will be playing on his PSP and using his workbooks a lot!
I will try to post a more thorough description of the next phase after I feel I have a better understanding of it. We go in for another spinal tap tomorrow morning and he will also receive all three of the new drugs tomorrow so I will give everyone an update soon!
I am content with our decision...but am nervous about the next stage of treatment which lasts for 8 weeks. Ben will be getting three new drugs which may have stronger side effects than what we have had to deal with so far. They told us that likely reactions are vomiting, hair loss and loss of appetite. There may also be some impact on his blood counts so we will need to continue to be diligent about exposure to germs. We will need to spend quite a bit of time at the infusion center (4 days a week) for drug transfusions so I am sure he will be playing on his PSP and using his workbooks a lot!
I will try to post a more thorough description of the next phase after I feel I have a better understanding of it. We go in for another spinal tap tomorrow morning and he will also receive all three of the new drugs tomorrow so I will give everyone an update soon!
Friday, June 15, 2007
Decision Time
We were supposed to decide whether Ben will participate in the next clinical trial by today, but we've been given until Monday since we have not had the chance to speak with Dr. Hurvitz. I did speak with one of the oncology nurses and one of our other doctors yesterday, and I am a bit more inclined to do the study at this point. If we don't "randomize" (i.e. participate in the study and have Ben get one of four random treatment protocols), we probably would get one of the two "middle" intensity protocols anyway. And the PEG-Asparaginase drug we are concerned about Ben having to get (the one with the huge shots in his thighs) apparently is a tremendously effective cancer drug, so there may be some significant medical benefit to him being on one of the protocols where he gets more of that drug. But we'll be re-reading the protocols and doing a lot of thinking over the weekend.
My mom is here until Sunday, and the kids are having a great time with her. Amazingly, Ben took the fishing game out of his PSP and started playing a Teenage Mutant Ninja Turtles game. But he's still crazy about fishing. He's received some really cool gifts lately. The LA Kings sent a puck signed by Alexander Frolov, Ben's favorite hockey player. Some military and police friends of mine have sent challenge coins, unit patches and posters. And people from my mother's company's main office sent hockey jerseys and t-shirts for him. He's a lucky kid.
That's it for now. I had an early conference call today and I'm going upstairs to see if anyone is awake yet.
My mom is here until Sunday, and the kids are having a great time with her. Amazingly, Ben took the fishing game out of his PSP and started playing a Teenage Mutant Ninja Turtles game. But he's still crazy about fishing. He's received some really cool gifts lately. The LA Kings sent a puck signed by Alexander Frolov, Ben's favorite hockey player. Some military and police friends of mine have sent challenge coins, unit patches and posters. And people from my mother's company's main office sent hockey jerseys and t-shirts for him. He's a lucky kid.
That's it for now. I had an early conference call today and I'm going upstairs to see if anyone is awake yet.
Wednesday, June 13, 2007
More good test results
Ben went to the cardiologist today for an EKG and an echocardiogram (basically an ultrasound of the heart). Both tests were negative, so that's great news.
Ben and David's Grandmom is coming in from Arizona for a visit tomorrow, so the boys are really excited. That's it for now.
Ben and David's Grandmom is coming in from Arizona for a visit tomorrow, so the boys are really excited. That's it for now.
Tuesday, June 12, 2007
Woo Hoo!!!
The MRD (minimum residual disease) test results just came back and they are negative (which is a good thing)!!!! The MRD test looks at what is going on in the bone marrow and studies have shown that if the MRD is negative at the end of the induction phase the prognosis is better!! We also received confirmation about the blasts and they are at 2%, which is also a great number (anything under 5% is good). These test results mean that Ben is in the average risk category.
We have some big decisions coming up...but I am too happy to stress about that at the moment.
We have some big decisions coming up...but I am too happy to stress about that at the moment.
Monday, June 11, 2007
Preliminary Report
Ben's nurse called this afternoon to give us a little news. The first great thing is the spinal tap came back negative (woo hoo!). The preliminary report on the bone marrow is that the blasts have stayed under 5% which is also a great thing. Of course, I will be more excited when we get the final report tomorrow confirming this! They have not received the report on the MRD number. Although they are hoping to get the results tomorrow, the tests are being conducted by an outside lab so they really can't guarantee when we will receive them.
I was joking with the nurse that I felt like I was forgetting to give Ben some of his medicines. I had been lining them all up on the island because there were so many I needed to make sure I had them all (and had to make sure I had them in the right order - Ben likes to take them from the worst tasting to the best). Right now there are only 3 and she says that I can probably stop one of them for at least a little while. It sure is nice to get a little break from the huge amounts of medicine!
She said that we may need to come in to see them later this week or over the weekend just to do a fibrinogen test to get ready for next week's spinal tap but other than that we should really have the week off! We do have to go see the cardiologist for a follow-up EKG on Wednesday but that should be pretty easy. So everything is good right now!
Only one weird thing today. Ben came with me to pick up David from camp this afternoon and we parked and walked over to the school playground. Ben was excited that he might get a chance to see some of his friends. He was very excited when he saw a friend and went up and said hello...but the friend wouldn't say hello back. Ben was a bit confused and sad about this. After talking about it for a little while Ben decided that his friend was probably just surprised to see him and maybe he didn't recognize him at first because of his weight gain. I think I need to plan some more playdates. I think it will be good for Ben to see his friends more when he is up to it and also good for his friends to see that even though he might look a little different and doesn't have the same amount of energy he is still the same old amazing and wonderful Ben!
I was joking with the nurse that I felt like I was forgetting to give Ben some of his medicines. I had been lining them all up on the island because there were so many I needed to make sure I had them all (and had to make sure I had them in the right order - Ben likes to take them from the worst tasting to the best). Right now there are only 3 and she says that I can probably stop one of them for at least a little while. It sure is nice to get a little break from the huge amounts of medicine!
She said that we may need to come in to see them later this week or over the weekend just to do a fibrinogen test to get ready for next week's spinal tap but other than that we should really have the week off! We do have to go see the cardiologist for a follow-up EKG on Wednesday but that should be pretty easy. So everything is good right now!
Only one weird thing today. Ben came with me to pick up David from camp this afternoon and we parked and walked over to the school playground. Ben was excited that he might get a chance to see some of his friends. He was very excited when he saw a friend and went up and said hello...but the friend wouldn't say hello back. Ben was a bit confused and sad about this. After talking about it for a little while Ben decided that his friend was probably just surprised to see him and maybe he didn't recognize him at first because of his weight gain. I think I need to plan some more playdates. I think it will be good for Ben to see his friends more when he is up to it and also good for his friends to see that even though he might look a little different and doesn't have the same amount of energy he is still the same old amazing and wonderful Ben!
Sunday, June 10, 2007
Relaxing Sunday
We don't have much much to report today.
Scott took off for his business trip early this morning. When we woke up I asked Ben & David what they were in the mood to do today - they answered "be lazy!" (I actually think David answered "do nothing...and play Civilization.") Well, I sure didn't have any trouble granting that wish!
We read books, played games and of course played video games. We watched E.T. - the boys absolutely loved it. We also had a little play date this afternoon with one of David's friends from school (although I must admit that the play date was more for Mommy than the boys). All in all a very relaxing and lazy day.
We are hoping to get some of the test results from the bone marrow biopsy tomorrow so I will be sure to make a post if we do.
Scott took off for his business trip early this morning. When we woke up I asked Ben & David what they were in the mood to do today - they answered "be lazy!" (I actually think David answered "do nothing...and play Civilization.") Well, I sure didn't have any trouble granting that wish!
We read books, played games and of course played video games. We watched E.T. - the boys absolutely loved it. We also had a little play date this afternoon with one of David's friends from school (although I must admit that the play date was more for Mommy than the boys). All in all a very relaxing and lazy day.
We are hoping to get some of the test results from the bone marrow biopsy tomorrow so I will be sure to make a post if we do.
Saturday, June 9, 2007
Serious Second Thoughts
This morning, Nicole and I started reading the details of the next phase of the study Ben is participating in (technically, the next phase is a separate study, and it requires a separate consent). We had understood there to be very little difference among the four different treatments Ben might get under this study, but we now know that the study is about intensified treatment. Ben would get either the currently standard treatment for "standard risk" ALL, the currently standard treatment for "high risk" ALL, or one of two treatments in between. What this means is that, if Ben participates in the study, he would have a 75% chance of getting more intensive treatment with the accompanying more intensive side effects.
So we are hesitant. We know that Ben probably will survive this disease because many children before him participated in studies like these, and we want to help other kids in the same way. But at the same time, we want to protect Ben from the pain of cancer treatment as much as we can, and it is not clear whether it is right to put a child through additional pain to help other kids. At the same time, it is quite possible that Ben might have a better chance of surviving the disease if he gets the more intensive treatment. So we'll have to think long and hard about this. We also need to consider whether and to what extent we should involve Ben in the decision. Not easy stuff.
So we are hesitant. We know that Ben probably will survive this disease because many children before him participated in studies like these, and we want to help other kids in the same way. But at the same time, we want to protect Ben from the pain of cancer treatment as much as we can, and it is not clear whether it is right to put a child through additional pain to help other kids. At the same time, it is quite possible that Ben might have a better chance of surviving the disease if he gets the more intensive treatment. So we'll have to think long and hard about this. We also need to consider whether and to what extent we should involve Ben in the decision. Not easy stuff.
Wish
I told Ben that we found out yesterday that he may get a wish granted by the Make a Wish Foundation. Ben asked what kids wish for. I told him I wasn't sure but I thought people probably wish for cool toys or to meet a famous person or to go on a cool trip. We thought it might be fun just to imagine what he would ask for. After a few seconds he said, "my only wish is that I am cured and get to go back to school with my friends because I miss everyone so much."
Friday, June 8, 2007
Can't leave everyone hanging
Neither of us really feels like writing a long post, but we thought we'd better give a quick report. Ben had a bone marrow biopsy and got some intrathecal chemo today. Results next week. He's feeling OK.
Nicole and I are now into a show on Lifetime Real Women called "Gay, Straight or Taken"! A woman dates three guys on each show and has to guess which one is gay, which one is straight and available, and which one is straight and taken. The show proves that my gaydar is extremely strong. LOL
More later.
Nicole and I are now into a show on Lifetime Real Women called "Gay, Straight or Taken"! A woman dates three guys on each show and has to guess which one is gay, which one is straight and available, and which one is straight and taken. The show proves that my gaydar is extremely strong. LOL
More later.
Thursday, June 7, 2007
End of the Induction Phase
Tomorrow is Day 29 of Ben's chemotherapy, the last day of what they call the "induction" phase. He'll have another bone marrow biopsy in the morning, the results of which will determine what happens next. We have every reason to believe that the blast cells will remain below 5% (apparently you just don't see kids who were in remission at Day 15 coming out of it by Day 29), but we need to see whether Ben has what they call Minimum Residual Disease (MRD). (I may be butchering the term -- I am writing from memory).
Personally, I am trying to adjust to being back to work. Ben just had a cryoprecipitate transfusion at the hospital, and I did not go. I didn't go yesterday when he went in for a fibrinogen blood test either. I will go tomorrow morning, as I'm trying to differentiate between routine and significant procedures. My partners and the other lawyers and staff at my firm have been great covering for me, but I really want to get back to normal and earn my living as soon as I can (some of you know that I was out with pneumonia for quite a while just before Ben was diagnosed). Next week I am taking a three-day business trip (one day of travel and two days of meetings), which is hard because we will be expecting bone marrow test results. But life has to go on.
Anyway, Ben got a Playstation 3 today from a very generous friend of his at school. So I am hoping to get him some games for it on the way home. I need to finish a big project first, so we'll see if the stores are still open when I leave!
I know I owe all of you a more detailed explanation of the prior bone marrow test results and Ben's future course of treatment. Don't worry, I'll get to it eventually . . .
Thanks again to everyone for the wonderful support. That's it for now.
Personally, I am trying to adjust to being back to work. Ben just had a cryoprecipitate transfusion at the hospital, and I did not go. I didn't go yesterday when he went in for a fibrinogen blood test either. I will go tomorrow morning, as I'm trying to differentiate between routine and significant procedures. My partners and the other lawyers and staff at my firm have been great covering for me, but I really want to get back to normal and earn my living as soon as I can (some of you know that I was out with pneumonia for quite a while just before Ben was diagnosed). Next week I am taking a three-day business trip (one day of travel and two days of meetings), which is hard because we will be expecting bone marrow test results. But life has to go on.
Anyway, Ben got a Playstation 3 today from a very generous friend of his at school. So I am hoping to get him some games for it on the way home. I need to finish a big project first, so we'll see if the stores are still open when I leave!
I know I owe all of you a more detailed explanation of the prior bone marrow test results and Ben's future course of treatment. Don't worry, I'll get to it eventually . . .
Thanks again to everyone for the wonderful support. That's it for now.
Ben's Attitude
I never thought I would be getting lessons about how to behave from a 6 year old but I am now! I know I have said this many times lately...but Ben is such an amazing boy!!
We had a couple of good friends from school come over yesterday and Ben was so great at explaining his PICC line and what it is for and assuring everyone that it doesn't hurt at all (although it does freak him out a little knowing that it goes all the way into his chest). I thought the best was when he explained that the reason he looks so different is that he has gained a lot of weight because of the steroids that he needs to take. He laughed and told his friends that they would not believe how much he eats but reassured everyone that as soon as he goes off the medicine he will go back to normal.
Although there are days when he is sad or frustrated that he doesn't feel well, most of the time he has a very positive attitude. He told me the other day that it is kind of nice that he can just lay around for awhile as he had been getting so tired it is good to give his body a break. Of course, he also tells me that a good thing about being sick is that he can watch tv and play video games all day long!
No matter what this disease throws at him Ben seems to take it in stride and figure out something positive to take from it. WHAT AN AMAZING BOY!!!
By the way, today is David's last day of Preschool!! I am going to go over to the school for a little last day of school party today. Ben says that he is so proud of David and when David gets home from school he will help him start on his homework to get ready for K-1!
We had a couple of good friends from school come over yesterday and Ben was so great at explaining his PICC line and what it is for and assuring everyone that it doesn't hurt at all (although it does freak him out a little knowing that it goes all the way into his chest). I thought the best was when he explained that the reason he looks so different is that he has gained a lot of weight because of the steroids that he needs to take. He laughed and told his friends that they would not believe how much he eats but reassured everyone that as soon as he goes off the medicine he will go back to normal.
Although there are days when he is sad or frustrated that he doesn't feel well, most of the time he has a very positive attitude. He told me the other day that it is kind of nice that he can just lay around for awhile as he had been getting so tired it is good to give his body a break. Of course, he also tells me that a good thing about being sick is that he can watch tv and play video games all day long!
No matter what this disease throws at him Ben seems to take it in stride and figure out something positive to take from it. WHAT AN AMAZING BOY!!!
By the way, today is David's last day of Preschool!! I am going to go over to the school for a little last day of school party today. Ben says that he is so proud of David and when David gets home from school he will help him start on his homework to get ready for K-1!
Wednesday, June 6, 2007
Daily Report
There hasn't been much to report the past couple of days. Ben was exhausted yesterday and his legs and feet hurt a lot so he wasn't in a very good mood. We thought our big outing was going to be picking up David from school...but Ben was so tired he couldn't even bring himself to do that. Thankfully, Maggie once again saved the day and picked up David for us!
Today has been relatively quiet. We went over to the hospital just for a blood test to see whether he needs a transfusion for low fibrinogen before the big tests on Friday. We are hanging out watching fishing shows on tv waiting for the results (yes, I did say fishing shows! He is absolutely obsessed with playing a fishing game on his PSP and watching fishing on tv. He loves to dream about the perfect fishing trip to go on after he is better!)
Well he is calling for me because I am missing a big fish being caught so I have to run!
Today has been relatively quiet. We went over to the hospital just for a blood test to see whether he needs a transfusion for low fibrinogen before the big tests on Friday. We are hanging out watching fishing shows on tv waiting for the results (yes, I did say fishing shows! He is absolutely obsessed with playing a fishing game on his PSP and watching fishing on tv. He loves to dream about the perfect fishing trip to go on after he is better!)
Well he is calling for me because I am missing a big fish being caught so I have to run!
Monday, June 4, 2007
Monday
Not much to report today. Ben was very tired and just wanted to read and play his PSP all day. I think he was still wiped out from our walk up to a local restaurant last night. Ben said it made him very tired to make that long walk (which was his idea!) but also made him feel good and he can't wait to do it again.
The highlight of the day was going to pick up David from school. Everyone was so excited to see him. Ben said he felt like a star. He was able to wave at many friends and even received some hugs through the window from teachers!
The highlight of the day was going to pick up David from school. Everyone was so excited to see him. Ben said he felt like a star. He was able to wave at many friends and even received some hugs through the window from teachers!
Sunday, June 3, 2007
Cool New Internet Stuff!
Very cool morning this morning. First, I see that Nicole posted again! Then, I found two great Ben things on the Net.
First, Kasey Thomas, one of the K-1 teachers at Ben and David's school, is doing a triathalon to raise money for the Leukemia and Lymphoma Society in honor of Ben! There is a link to her web page in the right margin, or you can get there with this link: http://www.active.com/donate/tntgla/tntglaKThomas1.
Then, we found that Ben's favorite medical student intern, Roxy, has her own blog! And she wrote about Ben on it! You can check it out here: http://roxywoxy.blogspot.com/.
First, Kasey Thomas, one of the K-1 teachers at Ben and David's school, is doing a triathalon to raise money for the Leukemia and Lymphoma Society in honor of Ben! There is a link to her web page in the right margin, or you can get there with this link: http://www.active.com/donate/tntgla/tntglaKThomas1.
Then, we found that Ben's favorite medical student intern, Roxy, has her own blog! And she wrote about Ben on it! You can check it out here: http://roxywoxy.blogspot.com/.
Saturday, June 2, 2007
Reality Check
I was so ecstatic about the news we received yesterday that I must say I forgot about the realities of chemo and the disease that Ben must fight.
We were so happy that there wasn't much that could get us down yesterday but then during our stay at the infusion center Ben started having some major pains in his stomach which continued into the evening. We didn't get much sleep as he needed to spend most of the night in the bathroom. Of course, this is a normal side effect to the drugs he is receiving. But in the joy of yesterday morning I forgot that we will be facing many days and nights like this.
I will admit I was getting a little overwhelmed and down as the sun started to come up and he was still feeling so horrible...but after just a couple of hours of sleep he opened his eyes and said "Mommy, I feel so much better and my tummy doesn't hurt anymore" and he had a big smile on his face. He is such an amazing boy!! No matter what pain he faces...he gets through it and has an amazing attitude!
We were so happy that there wasn't much that could get us down yesterday but then during our stay at the infusion center Ben started having some major pains in his stomach which continued into the evening. We didn't get much sleep as he needed to spend most of the night in the bathroom. Of course, this is a normal side effect to the drugs he is receiving. But in the joy of yesterday morning I forgot that we will be facing many days and nights like this.
I will admit I was getting a little overwhelmed and down as the sun started to come up and he was still feeling so horrible...but after just a couple of hours of sleep he opened his eyes and said "Mommy, I feel so much better and my tummy doesn't hurt anymore" and he had a big smile on his face. He is such an amazing boy!! No matter what pain he faces...he gets through it and has an amazing attitude!
Saturday Report
Ben, David and I went to a store today to get new fishing rods and some tackle, as Ben wants to go fishing. Assuming the doctors allow it, I'll try to take them in the next couple of weeks. Irvine Lake, probably.
We had a nice visit from Uncle Mike and Aunt Betsey -- the kids now have cool Phillies jerseys.
I have lots of medical stuff to report (test results details, etc.), but frankly I don't feel like doing it right now! We just had an enjoyable, relaxing day. I have to spend most of the day tomorrow in the office, but Ben is going to try to go to a going away party for one of his friends who is moving to another city. It is in a park (outdoor environments are pretty safe even when there are people around), so we think it will be OK.
We had a nice visit from Uncle Mike and Aunt Betsey -- the kids now have cool Phillies jerseys.
I have lots of medical stuff to report (test results details, etc.), but frankly I don't feel like doing it right now! We just had an enjoyable, relaxing day. I have to spend most of the day tomorrow in the office, but Ben is going to try to go to a going away party for one of his friends who is moving to another city. It is in a park (outdoor environments are pretty safe even when there are people around), so we think it will be OK.
Friday, June 1, 2007
Back at the Hospital
We are in the Infusion Center to get cryoprecipitate (a blood product Ben needs when his fibrinogen level gets too low). No big deal. We are still floating on air!
David is with our friends around the corner. Ben is playing his new PSP fishing game -- we bought four games for the PSP this afternoon, and this is the first one he's trying.
[EDIT: I SEE THAT WHEN I POST VIA BLACKBERRY, THE TIME STAMPS ARE NOT SO ACCURATE . . .]
David is with our friends around the corner. Ben is playing his new PSP fishing game -- we bought four games for the PSP this afternoon, and this is the first one he's trying.
[EDIT: I SEE THAT WHEN I POST VIA BLACKBERRY, THE TIME STAMPS ARE NOT SO ACCURATE . . .]
REMISSION!!!!!!!!!!!!!!!!!
Yes, remission! We have the lab report, and that's what it says. I have thoroughly cross-examined Dr. Hurvitz, and we really can use the word! I will admit that I started crying in front of a bunch of girls!
It gets better. We are at a restaurant! Ben's white blood cell count, while still low, is high enough for us to do it! We still need to be careful about germs -- no exposure to sick people, lots of hand washing, avoid crowds, etc. -- but we don't need to take full neutropenic precautions anymore! After this, we're going to buy games for Ben's new PSP which a great friend of ours gave him yesterday!
I will post a lot more about all of this, including future treatment, later. We still have to do three years of treatment to make sure the cancer is all gone, and there are many opportunities for getting sidetracked. But we are totally overjoyed -- it's really up there with when the kids were born.
Thanks again to everyone for the prayers, support and encouragement. OK, back to our little celebration!
It gets better. We are at a restaurant! Ben's white blood cell count, while still low, is high enough for us to do it! We still need to be careful about germs -- no exposure to sick people, lots of hand washing, avoid crowds, etc. -- but we don't need to take full neutropenic precautions anymore! After this, we're going to buy games for Ben's new PSP which a great friend of ours gave him yesterday!
I will post a lot more about all of this, including future treatment, later. We still have to do three years of treatment to make sure the cancer is all gone, and there are many opportunities for getting sidetracked. But we are totally overjoyed -- it's really up there with when the kids were born.
Thanks again to everyone for the prayers, support and encouragement. OK, back to our little celebration!
Mid-visit Report
Hello from the playroom! We are waiting for lab results before going back in for the Vincristine. We haven't seen the doctors yet, but we did speak to Karen, one of the oncology nurses. She explained that the "zero" test result really was just a finding that the blast cells were below 5%. Apparently, even healthy people have some blast cells, which are created normally in the marrow during blood cell production. Less than 5% is healthy.
We won't know Ben's treatment protocol until after his next marrow biopsy, but currently we would get the medium-risk treatment. I'll explain what that entails later. And if our understanding of what is going on changes after we see the doctors, I'll clarify later.
The playroom is in a bit of disarray because they are about to do some floor repairs, but I took some photos and will post them later.
We won't know Ben's treatment protocol until after his next marrow biopsy, but currently we would get the medium-risk treatment. I'll explain what that entails later. And if our understanding of what is going on changes after we see the doctors, I'll clarify later.
The playroom is in a bit of disarray because they are about to do some floor repairs, but I took some photos and will post them later.
Friday morning
We are going to the hospital this morning to get Vincristine (IV chemo). No bone marrow biopsy today. This will be a good opportunity to get some more details from the doctors about Wednesday's roller coaster test results, including exactly what Ben's future treatment protocol is going to be. Although we understand he will be in the low risk group, we are still not entirely sure and hope to get some clarity.
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