Ben had the dreaded leg injections today...and didn't even cry. I couldn't believe it!!! He was extremely calm and brave. He is exhausted and his legs hurt tonight but he is so relieved that the PEG injections are done. We had a little celebration that there won't be anymore. His nurse at the Infusion Center was terrific and brought him lots of candy after the great job that he did - everyone was so impressed.
Thank you Poppy and Uncle Chris for coming over to eat lunch and hanging out with us to help keep Ben distracted and calm.
Ben gets the day off tomorrow but will need to go for a chemo treatment on Wednesday. We are going to the hospital right after the Halloween Parade at school so that he can hopefully have a little quiet time to rest up for trick or treating.
Monday, October 29, 2007
Thursday, October 25, 2007
Update
Ben woke up feeling great today! He was able to go to school and picked out many fun books at the Book Fair.
Wednesday, October 24, 2007
First Day of DI Complete
Ben had a tough day but he is sleeping now. We went straight to the hospital after dropping David off at school this morning. After going through the wonderful admissions process :) he then had to have blood drawn to make sure that all was okay for the busy morning of procedures.
Ben had an IV put in which was particularly painful today. He then had a spinal tap, a new PICC line put in, was given Vincristine and Doxorubicin and had more blood taken for additional tests. It took awhile for him to fully wake up from the drugs but was a good sport about everything as usual. His first request was for the candy dispensing machine full of candy corn that Grammy and Poppy brought for him. The drugs seem to be taking their toll on his tummy so was not feeling well and wanted to try to go to sleep early tonight. We are hoping that when he receives the chemo next Wednesday that it won't be quite as bad so that he can have a normal Halloween night.
Ben is upset about the fact that he needs a PICC line again. He knows that it is a good thing considering all the transfusions and blood draws that need to be done over the next 2 months, but he was really enjoying "feeling like a normal kid" for the past few weeks. The good thing is that this should be the last difficult phase and after we make it through this he will be in the Maintenance Phase for the next 3+ years. Bummer that it takes so long...but is so much less intense than the last 6 months...and no PICC line!
The steroids have also started today so hopefully they won't make him too moody this time around. He is really looking forward to the Book Fair at school tomorrow so we are hopeful he feels well in the morning. He recently jumped up to reading chapter books so he is excited to pick out some new books to read.
I guess I should try to go to bed. Ben talked me into letting him sleep in bed with me so that he can get extra snuggles tonight to help him feel better. Of course David couldn't be left out so now it is Mommy, two boys and three cats! We will all have sweet dreams together (especially now that we found out that Daddy gets to come home tomorrow from his trial!)
Ben had an IV put in which was particularly painful today. He then had a spinal tap, a new PICC line put in, was given Vincristine and Doxorubicin and had more blood taken for additional tests. It took awhile for him to fully wake up from the drugs but was a good sport about everything as usual. His first request was for the candy dispensing machine full of candy corn that Grammy and Poppy brought for him. The drugs seem to be taking their toll on his tummy so was not feeling well and wanted to try to go to sleep early tonight. We are hoping that when he receives the chemo next Wednesday that it won't be quite as bad so that he can have a normal Halloween night.
Ben is upset about the fact that he needs a PICC line again. He knows that it is a good thing considering all the transfusions and blood draws that need to be done over the next 2 months, but he was really enjoying "feeling like a normal kid" for the past few weeks. The good thing is that this should be the last difficult phase and after we make it through this he will be in the Maintenance Phase for the next 3+ years. Bummer that it takes so long...but is so much less intense than the last 6 months...and no PICC line!
The steroids have also started today so hopefully they won't make him too moody this time around. He is really looking forward to the Book Fair at school tomorrow so we are hopeful he feels well in the morning. He recently jumped up to reading chapter books so he is excited to pick out some new books to read.
I guess I should try to go to bed. Ben talked me into letting him sleep in bed with me so that he can get extra snuggles tonight to help him feel better. Of course David couldn't be left out so now it is Mommy, two boys and three cats! We will all have sweet dreams together (especially now that we found out that Daddy gets to come home tomorrow from his trial!)
Tuesday, October 23, 2007
Thanks, Grandmom!
My mom, Helen Freedman, recently finished her Light the Night project to raise money for the Leukemia and Lymphoma Society. Thanks to everyone who donated, and especially to Ben and David's Grandmom for working so hard to raise money for this great cause!
Grandmom has now moved on to helping me with the silent auction for the Cedars-Sinai annual dinner. She's already lined up five travel packages to resorts in Arizona and Puerto Rico! If anyone wants an invitation to this dinner, which is on November 15 in LA, let me know. Tickets start at ONLY $500. :)
Grandmom has now moved on to helping me with the silent auction for the Cedars-Sinai annual dinner. She's already lined up five travel packages to resorts in Arizona and Puerto Rico! If anyone wants an invitation to this dinner, which is on November 15 in LA, let me know. Tickets start at ONLY $500. :)
Sunday, October 14, 2007
Delayed Intensification Overview
We are coming to the end of the Interim Maintenance phase of treatment and we have really enjoyed the break. Starting next week the Delayed Intensification (DI) phase will begin. Ben has already received most of the drugs in earlier phases of his treatment so we are familiar with the side effects but there are a couple of new ones.
The schedule will be as follows:
Dexamethasone (by pill) days 1-21. This is the steroid Ben has taken in the previous phases so we expect him to get his round face and belly again. Unfortunately, this drug is the toughest on him emotionally because it causes huge mood swings. He goes from being happy to angry to sad in the matter of seconds. It is pretty difficult for him.
Vincristine (via PICC line) days 1, 8 and 15. This drug is pretty tough on his tummy but thankfully they give him Zofran to combat this so it is usually pretty mild.
Doxorubicin (via PICC line) days 1, 8 and 15. This is a new drug. Doxorubicin is a type of antibiotic that is only used in cancer chemotherapy. It slows or stops the growth of cancer cells in your body. Common side effects include low blood counts, nausea and hair loss. We will find out next week how Ben will react.
PEG Asparaginase (via needle in leg muscle) day 6. This is what we refer to as the dreaded leg injections. Of all the medications this is the one that keeps Ben awake at night with worry.
Cyclophosphamide (via PICC line) day 29. This is the mustard gas derivative that Scott described a few months ago. They need to give lots of hydration before and after (about 6-8 hours worth) to protect his kidneys so this will be a long day at the hospital, but thankfully doesn't cause Ben any discomfort.
Thioguanine (by pill) days 29-42. This is a new drug. Thioguanine belongs to a class of medications known as antimetabolites. It resembles a normal cell nutrient needed by cancer cells to grow. The cancer cells take up thioguanine, which then interferes with their growth. Common side effects are low blood counts and nausea.
Cytarabine (aka ARA-C) (via PICC line) days 29-32 and 36-39. Ben doesn't mind this because it just means we hang out at the Infusion Center for a few hours...although the fact that we will need to do this on Thanksgiving is not so great! This (and the cyclophosphamide) are the ones that really impacted his blood counts over the summer and caused the daily trips to the hospital for prophylactic antibiotics.
Methotrexate (via spinal tap) days 1 and 29. Ben is a pro at these now so shouldn't be a problem.
We are hoping that there won't be any big blood count drops at the beginning of this phase so Ben can continue to go to school for a little longer but we will wait and see. The PICC line will be put back in next week so at least blood draws will not cause him any pain.
The schedule will be as follows:
Dexamethasone (by pill) days 1-21. This is the steroid Ben has taken in the previous phases so we expect him to get his round face and belly again. Unfortunately, this drug is the toughest on him emotionally because it causes huge mood swings. He goes from being happy to angry to sad in the matter of seconds. It is pretty difficult for him.
Vincristine (via PICC line) days 1, 8 and 15. This drug is pretty tough on his tummy but thankfully they give him Zofran to combat this so it is usually pretty mild.
Doxorubicin (via PICC line) days 1, 8 and 15. This is a new drug. Doxorubicin is a type of antibiotic that is only used in cancer chemotherapy. It slows or stops the growth of cancer cells in your body. Common side effects include low blood counts, nausea and hair loss. We will find out next week how Ben will react.
PEG Asparaginase (via needle in leg muscle) day 6. This is what we refer to as the dreaded leg injections. Of all the medications this is the one that keeps Ben awake at night with worry.
Cyclophosphamide (via PICC line) day 29. This is the mustard gas derivative that Scott described a few months ago. They need to give lots of hydration before and after (about 6-8 hours worth) to protect his kidneys so this will be a long day at the hospital, but thankfully doesn't cause Ben any discomfort.
Thioguanine (by pill) days 29-42. This is a new drug. Thioguanine belongs to a class of medications known as antimetabolites. It resembles a normal cell nutrient needed by cancer cells to grow. The cancer cells take up thioguanine, which then interferes with their growth. Common side effects are low blood counts and nausea.
Cytarabine (aka ARA-C) (via PICC line) days 29-32 and 36-39. Ben doesn't mind this because it just means we hang out at the Infusion Center for a few hours...although the fact that we will need to do this on Thanksgiving is not so great! This (and the cyclophosphamide) are the ones that really impacted his blood counts over the summer and caused the daily trips to the hospital for prophylactic antibiotics.
Methotrexate (via spinal tap) days 1 and 29. Ben is a pro at these now so shouldn't be a problem.
We are hoping that there won't be any big blood count drops at the beginning of this phase so Ben can continue to go to school for a little longer but we will wait and see. The PICC line will be put back in next week so at least blood draws will not cause him any pain.
Thursday, October 11, 2007
OK, who wants to help?
Cedars-Sinai has a silent auction every year to raise money for the hospital, including the Cancer Institute. Nicole and I are going to help with the silent auction as part of our involvement with the Board of Governors.
So, are you going to help?
My Mom, Helen Freedman, already is working hard on soliciting donations for the silent auction through her contacts in the travel industry. If you can help with a donation for the silent auction, or if you are interested in attending the event on November 15, please let us know by posting a comment or e-mailing one of us directly. Thanks for your support!
So, are you going to help?
My Mom, Helen Freedman, already is working hard on soliciting donations for the silent auction through her contacts in the travel industry. If you can help with a donation for the silent auction, or if you are interested in attending the event on November 15, please let us know by posting a comment or e-mailing one of us directly. Thanks for your support!
More Good Numbers
We went to the hospital today for a check-up and blood draw. Ben's numbers look very good and the doctors were happy with the exam. We get the next TWO WEEKS OFF from the hospital!!!! Ben is very excited! (Although I must say that the boys had a lot of fun there today. Everyone treats them like superstars and they had everyone laughing the whole time with their silliness.)
When we go back in 2 weeks it will be for the start of the next phase (Delayed Intensification). I will give a full overview of that phase soon. Ben will have a new PICC line put in and the tougher chemo regimen will begin again. There will be some new drugs in this next phase so we are not sure yet how he will react to them.
For now, we are just going to try to keep everyone healthy and continue to enjoy the break!
When we go back in 2 weeks it will be for the start of the next phase (Delayed Intensification). I will give a full overview of that phase soon. Ben will have a new PICC line put in and the tougher chemo regimen will begin again. There will be some new drugs in this next phase so we are not sure yet how he will react to them.
For now, we are just going to try to keep everyone healthy and continue to enjoy the break!
Sunday, October 7, 2007
Hair loss
Ben's hair is really starting to fall out now. He still has hair all over his head, but it is getting really thin -- you can see his scalp without any problem. Although Uncle Chris already shaved his head to show solidarity, I am holding off until more comes out. That's primarily because I am in the middle of a long trial, and I think the jury might freak out if I showed up bald all of a sudden. :)
Ben and David are doing really well. Yesterday, we went to buy toys with the gift cards one of my former colleagues sent them. They got all Star Wars stuff -- it's the current obsession. LOL
Anyway, thanks to all of you for continuing to follow the blog. It is hard to believe that we're only five months into this, and that we still have more than three years to go. The continued support really means a lot.
Ben and David are doing really well. Yesterday, we went to buy toys with the gift cards one of my former colleagues sent them. They got all Star Wars stuff -- it's the current obsession. LOL
Anyway, thanks to all of you for continuing to follow the blog. It is hard to believe that we're only five months into this, and that we still have more than three years to go. The continued support really means a lot.
Thursday, October 4, 2007
Two Sick Boys
Things are pretty much the same here, except now there are two sick boys! They both have a cough and runny nose but still no fevers so we are hoping everyone will feel better by tomorrow.
Wednesday, October 3, 2007
Cold
Ben is home sick today with a cough and stuffy nose. The good news is that he does not have a fever so we are HOME - much better than the hospital. If he gets any worse I will need to bring him over to the hospital so the doctor can check him out and likely get him on some medications, but for now we are relaxing, reading, snuggling and of course playing video games!
The only other interesting news around here is that he lost another tooth yesterday and made some good money from the tooth fairy. He looks very cute with his two top front teeth missing!
The only other interesting news around here is that he lost another tooth yesterday and made some good money from the tooth fairy. He looks very cute with his two top front teeth missing!
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