Brody had a CT done yesterday which was his first since about 3 weeks after his surgery. I for one was worried going into this one-- Brody has been feeling pretty good lately and that is normally when you get the rug pulled out from under you.
To review a bit-- Brody had surgery in March to "debulk" his tumor-- the hope being that the chemo would work better on a smaller tumor and also so the tumor wouldn't be pressing so much on his other organs and causing issues (like obstructing urine flow from his kidney to his bladder, obstructing his bowels, etc)-- the Surgeon removed about 95% of the tumor-- the remaining parts were too "involved" meaning the posed more risk to remove then benefit from removing-- the surgeon didn't want to "hurt" Brody. We were optimistic about how his chemo has been working since most of the tumor removed was dead tissue-- part of this could have been from the chemo but also from when Brody was first diagnosed as having relapsed the tumor was growing rapidly and when this happens it can grow so fast as to cut off it's own blood supply.
Anyway-- since after his surgery, the tumor involvement remaining is all "live" tumor-- I for one was worried about the tumor regrouping-- apparently the chemo is still working to keep the tumor in check. Brody's oncologist said that the tumor looks to be "about the same and maybe a little smaller"-- since what is remaining is so oddly shaped, I imagine it is hard to tell if it is smaller or not-- but in 2 1/2 months it has not grown which is good news to us.
Yesterday (Friday) was Brody's normally off week (no chemo-- just labs)-- His ANC (Absolute Neutrophil Count) was pretty low (which is weird because his has been real good under this chemo)... it was low enough that Brody's oncologist wants him to stop his oral chemo (what he takes at home each day) til next week. The reason being if his ANC is not high enough by next Friday, his next round of IV chemo could be delayed.
Anyway-- that is pretty much all that is going on with us. The boys have 2 more days of school (Mon & Tue next week).... we will be doing a very light summer school with the boys-- we will be doing some reading and math 2 or 3 times per week-- We always want the boys to read (not a problem with Geordi who reads alot), but for math we need to cover some of the more obscure standards that we didn't cover in our home school curriculum.
Thats pretty much it for us....
More late....
Bill
Saturday, June 1, 2013
Saturday, May 18, 2013
Everything Going Well
Sorry for the lack of updates- as we have noted previously, no news is generally good news.
We have all been pretty busy for the last month. Brody has been feeling well about 99% of the time. He will occasionally have belly or back pain but seems to be fully recovered from his surgery. He still has an internal stint between his right kidney and his bladder. He has not had a CT since the middle of March and the plan is to have another CT in a few weeks to see where we are at and if the tumor looks like it has been kept in check then the stint will be removed-- the stint still bugs him at times (occasional pain) but not too often.... the purpose of this is if the tumor starts to grow again that it will maintain a channel for his urine to drain to his bladder so he doesn't have to get a nephrostemy tube again.... Nephrostomy tubes are NOT fun.
We managed to work in a trip to Disney World and Lego Land a few weeks ago-- we left after Brody's week 3 Chemo (week 4 is a lab week)-- and Brody's Oncologist was ok with us skipping labs on his off week as he hasn't really had any issues. We had a Childrens hospital line up down there to take him to if he had any issues. The boys had a blast however the weather didn't co-operate too well had a fair amount of rain on our park days. Brody's favorite ride was and still is Splash Mountain-- We literally went on this ride over 20 times although he did try and like Space Mountain as well... we did each of the parks and Brody was tall enough to ride every ride except the Aerosmith Rollercoaster at "Hollywood" studios. Brody's Oncologist wrote us a letter that allowed us to get a guest assistance pass for all the parks which allowed Brody to utilize the fast pass lines for nearly every ride-- this is good since Brody can get tired pretty easily-- however for the most part, the lines were not too bad anyway-- most of the popular rides had about 20 minute lines or less. We went to Lego Land one day too but this was somewhat of a disappointment after going to the Disney Parks. We stayed at a very nice Marriot Resort that had really good prices (perhaps it was a slow time). We had nice weather on our last 2 "beach days". We drove down there and back over 2 days each direction-- both ways we stopped near Chattanooga Tennessee to see Trish's sister Julie and her family.
While on the trip we talked to the Jaden and Brody and they both decided they want to go back to public school for the rest of the school year (we only have 3 weeks left). Trish got the ball rolling and they boys both started back up this past Wednesday-- we were able to work out a few things with Brody's Principal & Teacher to keep him hydrated and avoid germs (ie hand sanitizer on Brody's desk, allow Brody to have a drink at his desk, etc)-- we also wanted to have Brody evaluated and get and IEP (individual education plan) since he is a little bit behind in some of his skills.... His reading has come along way the last few months but we think he might be somewhat behind in other subjects and want to work with him over the summer.
We are considering enrolling the boys in the fall but we are obviously concerned about being able to keep the boys healthy and Brody on his chemo regimen (if he gets too sick he has stop chemo). His labs/counts have been very good the last few months-- we will see how things go.
I think thats about it- obviously more later.
We have all been pretty busy for the last month. Brody has been feeling well about 99% of the time. He will occasionally have belly or back pain but seems to be fully recovered from his surgery. He still has an internal stint between his right kidney and his bladder. He has not had a CT since the middle of March and the plan is to have another CT in a few weeks to see where we are at and if the tumor looks like it has been kept in check then the stint will be removed-- the stint still bugs him at times (occasional pain) but not too often.... the purpose of this is if the tumor starts to grow again that it will maintain a channel for his urine to drain to his bladder so he doesn't have to get a nephrostemy tube again.... Nephrostomy tubes are NOT fun.
We managed to work in a trip to Disney World and Lego Land a few weeks ago-- we left after Brody's week 3 Chemo (week 4 is a lab week)-- and Brody's Oncologist was ok with us skipping labs on his off week as he hasn't really had any issues. We had a Childrens hospital line up down there to take him to if he had any issues. The boys had a blast however the weather didn't co-operate too well had a fair amount of rain on our park days. Brody's favorite ride was and still is Splash Mountain-- We literally went on this ride over 20 times although he did try and like Space Mountain as well... we did each of the parks and Brody was tall enough to ride every ride except the Aerosmith Rollercoaster at "Hollywood" studios. Brody's Oncologist wrote us a letter that allowed us to get a guest assistance pass for all the parks which allowed Brody to utilize the fast pass lines for nearly every ride-- this is good since Brody can get tired pretty easily-- however for the most part, the lines were not too bad anyway-- most of the popular rides had about 20 minute lines or less. We went to Lego Land one day too but this was somewhat of a disappointment after going to the Disney Parks. We stayed at a very nice Marriot Resort that had really good prices (perhaps it was a slow time). We had nice weather on our last 2 "beach days". We drove down there and back over 2 days each direction-- both ways we stopped near Chattanooga Tennessee to see Trish's sister Julie and her family.
While on the trip we talked to the Jaden and Brody and they both decided they want to go back to public school for the rest of the school year (we only have 3 weeks left). Trish got the ball rolling and they boys both started back up this past Wednesday-- we were able to work out a few things with Brody's Principal & Teacher to keep him hydrated and avoid germs (ie hand sanitizer on Brody's desk, allow Brody to have a drink at his desk, etc)-- we also wanted to have Brody evaluated and get and IEP (individual education plan) since he is a little bit behind in some of his skills.... His reading has come along way the last few months but we think he might be somewhat behind in other subjects and want to work with him over the summer.
We are considering enrolling the boys in the fall but we are obviously concerned about being able to keep the boys healthy and Brody on his chemo regimen (if he gets too sick he has stop chemo). His labs/counts have been very good the last few months-- we will see how things go.
I think thats about it- obviously more later.
Friday, April 19, 2013
Friday, April 12, 2013
We Had a Fun Spring Break Trip to Pigeon Forge, TN
We took a trip to Pigeon Forge, TN for Spring Break. We had a great time. The boys enjoyed the hotel indoor swimming pool, waterslide, and hot tub. They had a blast riding go-karts, trampoline bungee-jumping, watching Comedy Barn show and Smoking Mountain Opry Show, riding down the Alpine slide, finding their way through a mirror maze, feeding birds at Parrot Mountain, and playing in arcades.
Brody had a few episodes of headaches, belly pains, chest pains, and back pain during the trip. But he managed to feel good for most of the trip. He was high-energy and ready to have fun, fun, fun most of the time. But he does tire quickly and cannot keep up his fun-loving energy for as long as he would like. He gets drained pretty quickly sometimes. Once the tiredness sets in, it's there. It's hard to see him wanting so badly to be able to keep up with his brothers but he just can't. He gets so mad too at times that he gets so tired. And, of course, the periodic episodes of sudden pains are not nice either. Fortunately, though, he has continued to feel well most of the time. And, although he certainly needs a lot of rest, when he's up and moving for the day, he's at it full-speed ahead. Easter 2013
Check out the boys hunting their Easter Eggs on YouTube!
http://www.youtube.com/watch?v=-TAKfDFWdIo
The boys had a great time hunting Easter eggs this year. Unfortunately Bill had to be at work bright and early and could not watch it in person. I video-taped it for him though. Click on link above and you can watch it too.
Brody had a head start looking for the eggs. He had woke up in the middle of the night and remembered that the Easter bunny had probably come while he was asleep. He was then too excited to go back to sleep. After a few hours of him begging to head downstairs, I finally gave in and let him go check it all out before his brothers woke up.
http://www.youtube.com/watch?v=-TAKfDFWdIo
The boys had a great time hunting Easter eggs this year. Unfortunately Bill had to be at work bright and early and could not watch it in person. I video-taped it for him though. Click on link above and you can watch it too.
Brody had a head start looking for the eggs. He had woke up in the middle of the night and remembered that the Easter bunny had probably come while he was asleep. He was then too excited to go back to sleep. After a few hours of him begging to head downstairs, I finally gave in and let him go check it all out before his brothers woke up.
Saturday, March 30, 2013
Friday, March 29, 2013
Resuming Bevacizumab today
Brody is scheduled to resume his bevacizumab today. This is one of 3 chemo drugs he has been on since last July-- this one works by preventing new blood vessel formation. He has been off this for 9 weeks now (accepted practice is to be off this for 4 weeks prior to and 4 weeks after surgery)-- we were extremely nervous about discontinuing this prior to surgery because his tumor was already so big. We have been less nervous since, but have been anxious to get it resumed.
Brody has been feeling pretty well lately-- we continue to struggle to get him to eat though. He has always been finicky but he doesn't seem to have much interest in some of what we've come to call his "go to" foods lately and he hasn't had much of an appetite when he does eat and as a result-- his weight has been about steady since after his surgery (about 5 pounds less then before his surgery).
His "go to" foods are cereal (Cocoa pebbles & Cinnamon Toast crunch mostly), Spaghetti-os with meatballs, pizza, Pizza rolls-- and he hasn't had much interest in these lately and when you ask him what he wants when he is hunggy he says "I don't know" and when we suggests food too him he will sometimes get mad at us for suggesting food he doesn't like.
The good news is that he has been feeling pretty good-- his incision is healing pretty well-- he is running around like his old self but he does tire easily it seems. He gets in our hot tub almost daily-- he really loves the water and missed it alot when he couldn't go in because of his nephrostomy tube that he had since May of last year-- We will definitely need to get the pool up (we bought a cheap above ground pool a few years ago after he as first diagnosed) when it warms up some more.
We took a few weeks off from home school for Brody's surgery but resumed for Geordi and Jaden on the 11th... we let Brody off an extra week until he was feeling better. Brody's reading has really improved the last few months and he continues to surprise us in how well he can read.
We re-enrolled Geordi in public school this past week (start of the 4th term)-- his first day back ended up being a snow day (no school)-- we didn't have a huge storm but the roads were relatively bad and I am assuming with our mild winter, they had snow days to burn. Geordi has really missed seeing his friends and is happy to be back. Jaden hasn't shown any interest in returning to public school and in our opinion he is excelling at home school so we are content in home schooling Brody and Jaden the rest of the year.
That about it for us...
Thanks to everyone for keeping us in your thoughts and prayers....
Brody has been feeling pretty well lately-- we continue to struggle to get him to eat though. He has always been finicky but he doesn't seem to have much interest in some of what we've come to call his "go to" foods lately and he hasn't had much of an appetite when he does eat and as a result-- his weight has been about steady since after his surgery (about 5 pounds less then before his surgery).
His "go to" foods are cereal (Cocoa pebbles & Cinnamon Toast crunch mostly), Spaghetti-os with meatballs, pizza, Pizza rolls-- and he hasn't had much interest in these lately and when you ask him what he wants when he is hunggy he says "I don't know" and when we suggests food too him he will sometimes get mad at us for suggesting food he doesn't like.
The good news is that he has been feeling pretty good-- his incision is healing pretty well-- he is running around like his old self but he does tire easily it seems. He gets in our hot tub almost daily-- he really loves the water and missed it alot when he couldn't go in because of his nephrostomy tube that he had since May of last year-- We will definitely need to get the pool up (we bought a cheap above ground pool a few years ago after he as first diagnosed) when it warms up some more.
We took a few weeks off from home school for Brody's surgery but resumed for Geordi and Jaden on the 11th... we let Brody off an extra week until he was feeling better. Brody's reading has really improved the last few months and he continues to surprise us in how well he can read.
We re-enrolled Geordi in public school this past week (start of the 4th term)-- his first day back ended up being a snow day (no school)-- we didn't have a huge storm but the roads were relatively bad and I am assuming with our mild winter, they had snow days to burn. Geordi has really missed seeing his friends and is happy to be back. Jaden hasn't shown any interest in returning to public school and in our opinion he is excelling at home school so we are content in home schooling Brody and Jaden the rest of the year.
That about it for us...
Thanks to everyone for keeping us in your thoughts and prayers....
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