Hey Everyone
Well overall it was a good day. Ben had his port accessed for the first time and it went great no tears, no pain. Yeah 4W nurses!!!! Ben did great with the first chemo, took a 4 hour break running fluids and then started the second chemo, second went well then the last ten minutes he got a little sick, sweaty tummy ache your basic feeling ickey! Luckily the cousins arrived and lifted his spirits. So all in all Ben did great today, he is very tired and still feeling ickey but it looks like we may be able to go home tomorrow afternoon if he has a good night.
We will keep you posted.
Erin
Monday, August 17, 2009
Sunday, August 16, 2009
Starting New Chemo Tomorrow!
Hey Everyone,
Well we have decide on a new treatment plan for Ben to fight the growing tumors. He has done really well since we started on the steroids after learning of progression, gaining weight quickly but also no symptoms right now! So hopefully after this first dose of new chemo we can back down on the steroids before he completely eats us out of house and home. Tomorrow morning Ben and I check into Children's Hospital. They will access his new port - so that means no IVs in the arm YEAH! He will get his first new chemo and then some fluids, then 6 hours later they will give him his second new chemo this one originally was supposed to be split into 5 doses and be administered over the course of a week while admitted. Recently the protocol has been modified for brain tumor cases and they give the entire dose at once. If Ben tolerates it well we will probably be able to go home Tuesday night or Wednesday morning. So please pray for Ben through out the day tomorrow that his little body can handle all the meds we are going to throw at it!
While we get admitted tomorrow daddy is going to St Andrew's for Kindergarten orientation!!! Ben is very excited about starting Kindergarten next Monday. We are hopeful he will handle the switch to the new school along with this new chemo regiment. Ben will be going for chemo infusions every other week - so he will be missing a little school pretty routinely. But as smart as Ben is there are no worries that he will fall behind. Besides he's trying to talk Dr Velez into doing his chemo at school so he doesn't miss it - I'm pretty sure he's not winning this one, he usually gets Dr Velez to do what he wants but this one probably not going to happen!
We will try to post tomorrow to let you all know how he is doing.
Erin
Well we have decide on a new treatment plan for Ben to fight the growing tumors. He has done really well since we started on the steroids after learning of progression, gaining weight quickly but also no symptoms right now! So hopefully after this first dose of new chemo we can back down on the steroids before he completely eats us out of house and home. Tomorrow morning Ben and I check into Children's Hospital. They will access his new port - so that means no IVs in the arm YEAH! He will get his first new chemo and then some fluids, then 6 hours later they will give him his second new chemo this one originally was supposed to be split into 5 doses and be administered over the course of a week while admitted. Recently the protocol has been modified for brain tumor cases and they give the entire dose at once. If Ben tolerates it well we will probably be able to go home Tuesday night or Wednesday morning. So please pray for Ben through out the day tomorrow that his little body can handle all the meds we are going to throw at it!
While we get admitted tomorrow daddy is going to St Andrew's for Kindergarten orientation!!! Ben is very excited about starting Kindergarten next Monday. We are hopeful he will handle the switch to the new school along with this new chemo regiment. Ben will be going for chemo infusions every other week - so he will be missing a little school pretty routinely. But as smart as Ben is there are no worries that he will fall behind. Besides he's trying to talk Dr Velez into doing his chemo at school so he doesn't miss it - I'm pretty sure he's not winning this one, he usually gets Dr Velez to do what he wants but this one probably not going to happen!
We will try to post tomorrow to let you all know how he is doing.
Erin
Wednesday, August 12, 2009
GET YOUR GOLD ON !
Hey Everyone-
I bet you all know what the color pink represents...Breast Cancer awareness. But I bet you didn't know what gold represents...Childhood Cancer Awareness. September is Childhood Cancer Awareness Month, so get your gold on. More funding is needed to fight all types of childhood cancer. Show your support for the kids.
VISIT WWW.TEAMUNITE.NET FOR THE LATEST STRATEGY AND REMEMBER.....September is Childhood Cancer Awareness Month!
Ben's Team Unite Team Name is "Ben's Pirate Crew" !!!
GET YOUR GOLD ON!!! FYI Team unite has designed special shirts for this purpose...and guess what - Ben's cute little face is on the back of it! He is in Group 1. So if you order a shirt and you want our little pirates face on the back of it be sure to order group 1 !!
Ben is doing real well - we check in to Children's Hospital Monday to start the new chemo - we will be there for a week and I'm sure he'd love visitors!!!
Erin
I bet you all know what the color pink represents...Breast Cancer awareness. But I bet you didn't know what gold represents...Childhood Cancer Awareness. September is Childhood Cancer Awareness Month, so get your gold on. More funding is needed to fight all types of childhood cancer. Show your support for the kids.
VISIT WWW.TEAMUNITE.NET FOR THE LATEST STRATEGY AND REMEMBER.....September is Childhood Cancer Awareness Month!
Ben's Team Unite Team Name is "Ben's Pirate Crew" !!!
GET YOUR GOLD ON!!! FYI Team unite has designed special shirts for this purpose...and guess what - Ben's cute little face is on the back of it! He is in Group 1. So if you order a shirt and you want our little pirates face on the back of it be sure to order group 1 !!
Ben is doing real well - we check in to Children's Hospital Monday to start the new chemo - we will be there for a week and I'm sure he'd love visitors!!!
Erin
Saturday, August 8, 2009
Ben's doing great
Hello All
Ben had his port placement surgery yesterday around 5pm. He did really well and the doctors listened and didn't give him versed so he woke up great. Nice and quick with no balance issues! We were released last night and got home at around 10pm. He woke up this morning demanding pancakes and friends over to play - so he seems to be doing great. He is in a little pain at the surgery site but doesn't seem to be bothering him to much.
Have a great weekend!
Erin
Ben had his port placement surgery yesterday around 5pm. He did really well and the doctors listened and didn't give him versed so he woke up great. Nice and quick with no balance issues! We were released last night and got home at around 10pm. He woke up this morning demanding pancakes and friends over to play - so he seems to be doing great. He is in a little pain at the surgery site but doesn't seem to be bothering him to much.
Have a great weekend!
Erin
Thursday, August 6, 2009
Partial Plan
Hello All
Well we met with Dr Velez yesterday and we now have the beginnings of a plan. Ben will be going in for surgery tomorrow (Friday) afternoon to have a port inserted. For those of you who don't know the port is a semi-permanent "button" inserted into a vessel in his chest. It will give the doctors and nurses access to give Ben medications and Chemo with out an IV that would have to be changed out every few days. The port gets "accessed" when they need to give him stuff and can stay accessed for extended periods of time while an IV has about a 3 day max. When no accessed its basically just a bump or button under his skin. They will also be able to draw blood from it, so basically it means much fewer needle sticks for Ben and a nice stable access point for med delivery. (Hope I explained that well enough!)
Dr Velez will be consulting with colleagues including Dr Warren at NIH who is recognized as the leading expert in this type of cancer, she has Ben in loop (via phone) on Ben's care though out. They will go over all available protocols that Ben may be eligible for and we will then discuss there recommendations next week. But regardless of which we choose Ben will need the port so we have decided to get started on that.
It should be a short hospital stay maybe just one night, for port placement. So say a few extra prayers for Ben tomorrow afternoon that the procedure goes well and there isn't much pain.
As always thank you for all the support.
Erin
Well we met with Dr Velez yesterday and we now have the beginnings of a plan. Ben will be going in for surgery tomorrow (Friday) afternoon to have a port inserted. For those of you who don't know the port is a semi-permanent "button" inserted into a vessel in his chest. It will give the doctors and nurses access to give Ben medications and Chemo with out an IV that would have to be changed out every few days. The port gets "accessed" when they need to give him stuff and can stay accessed for extended periods of time while an IV has about a 3 day max. When no accessed its basically just a bump or button under his skin. They will also be able to draw blood from it, so basically it means much fewer needle sticks for Ben and a nice stable access point for med delivery. (Hope I explained that well enough!)
Dr Velez will be consulting with colleagues including Dr Warren at NIH who is recognized as the leading expert in this type of cancer, she has Ben in loop (via phone) on Ben's care though out. They will go over all available protocols that Ben may be eligible for and we will then discuss there recommendations next week. But regardless of which we choose Ben will need the port so we have decided to get started on that.
It should be a short hospital stay maybe just one night, for port placement. So say a few extra prayers for Ben tomorrow afternoon that the procedure goes well and there isn't much pain.
As always thank you for all the support.
Erin
Tuesday, August 4, 2009
MRI results
Okay so we got some bad news today. Ben's tumor has gotten larger and a second tumor has developed. The second tumor is also inoperable. Thats about all the information I have right now. Big Ben and I are meeting with the oncologist tomorrow to come up with a game plan. We are home now. Please don't take it personal if we can't take phone calls or call you back for the next few days we have lots to do. We will keep the blog updated to keep you in the loop. Thank you for all your kinds words and prayers, keep them coming!!
Love always
The Sarrats
Love always
The Sarrats
Monday, August 3, 2009
Quick Update
Hey All
I don't wan tto alarm anyone, but I do want to let you know that Ben is being admitted to Children's this afternoon for an early MRI. Ben is scheduled for his MRI next Wednesday the 12th but recently we have been seeing mild symptoms we can't ignore and if his tumor is growing we need to know as soon as possible so we can get in front of it. There are other things that can cause his symptoms..hopefully its tumor death, causing some mild swelling. Please don't worry, just say a few extra prayers today and tomorrow!
Will update when I know more.
Erin
I don't wan tto alarm anyone, but I do want to let you know that Ben is being admitted to Children's this afternoon for an early MRI. Ben is scheduled for his MRI next Wednesday the 12th but recently we have been seeing mild symptoms we can't ignore and if his tumor is growing we need to know as soon as possible so we can get in front of it. There are other things that can cause his symptoms..hopefully its tumor death, causing some mild swelling. Please don't worry, just say a few extra prayers today and tomorrow!
Will update when I know more.
Erin
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