Quick Update

Sorry we didn't post back sooner.

Brody got his chemo as scheduled last friday. Unfortunately the surgeons had not had a chance to evaluate Brody's scans prior to his scheduled chemo. We spoke to Brody's oncologist about "holding" his chemo til we hear from surgery but Brody's oncologist did not feel comfortable about doing this as there is not guarantee that the surgeons will agree to attempt the surgery and he didn't think it prudent to withold it without a plan in place. Trish and I discussed this and we agreed with his judgement- We were both kind of wanted to get the ball rolling and do anything to move this along to get this going. Trish palpatated Brody's belly again on Thursday and to her the tumor felt a little bit smaller (was lower anyway) then the previous week. His "bulge" on his left back (is still subtle) and did not look any bigger, so if the tumor is growing still, it is doing so slowly.

Trish and I did speak to Brody's doctor about having the tumor board at Memorial Sloan Kettering also evaluate Brody for surgery again also-- this is so we have another set of eyes looking at it and also because Dr La Quaglia there specializes in doing surgery on tumors including Sarcomas and may think he can attempt it when the local surgeons may not... we thought getting concurrent evaluations may move this process along. With Brody receiving his Bevacizumab last Friday, he earliest he could have surgery would be 4 weeks after that. As mentioned previously Brody receives Bevacizumab every 2 weeks.

Anyway-- Brody has continued to feel well. He could eat a little better (still finicky) but for the most part he has a good appetite and feels fine. His hair is continuing to grow and he is about due for a haircut.

Really, thats about it with us.... the boys are continuing their homeschooling and doing pretty well for the most part.

Thats about it for now....

Bill

Jan 5th

First of all, sorry for the lack of updates but there really just wasn’t a lot to report and as we have always maintained, no news is generally good news at our house.

Unfortunately, we have do have some news to report that isn't so good.

The good news is that Brody has a been feeling fantastic—he has been super hyper lately, laughing, playing, tormenting his big brothers at times. He got his cast off a few weeks ago (it is split now and we put it on only at night with velcro straps) has been doing real good with school and has been enjoying just being a kid. He also has been eating real well lately. He has been playing a fair amount on his new Nexus 7 tablet he got for Christmas and last night he gave me a pretty good lecture on how to play Minecraft on it.

The bad news is that Brody’s tumor appears to be getting larger both visually and by the CT that he had yesterday. Trish and I noticed about 8 days ago when doing Brody’s dressing change for his nephrostomy tube that it appeared as if there was a slight bulge on his left side about where his kidney is, maybe a little below… you can’t really see the bulge with the dressing on and it was fairly subtle (meaning we just may not have noticed it before). Trish regularly palpates his tummy and the upper edge of the tumor has been since last July just below his belly button—it is now about even and maybe slightly above his belly button. Brody had a CT yesterday and Brody’s oncologist reported to us that the tumor appears to be about ½ a centimeter or so bigger then the previous CT done about 2 months ago. We also changed Brody’s dressing again on Friday night and the “bulge” looks slightly larger then the previous week.

The oncologists are of the opinion that the chemo appears to still be working but that the tumor is so large that the chemo drugs aren’t getting to the entire tumor and that it is slowly growing. They and we are in agreement that we need to get proactive with Brody’s treatment and try to get ahead of it. As mentioned previously, the chemo regimen Brody is on is a “maintenance” chemo—meaning that it isn’t overly aggressive against the tumor but is also less toxic (meaning he feels better while on it) and is more intended to hold this type of cancer at bay—obviously better when the tumor is small. Since we have already tried the standard chemo treatments (back in May, June,  & July), and they were not effective, we are planning on getting a surgical consultation next week done and we are hopeful that the surgeons are confident that if they can’t get the entire tumor, they can at least remove part of it so  there is less tumor to treat with the Chemo Brody is on, and also give him more room in his abdomen for his organs (kidneys and bowels mainly) to function (and be rid of his nephrostomy tube). 

I wish it were just this simple but it’s not--- one of the Chemo drugs Brody receives (every 2 weeks) is called Bevacizumab (I can’t say it either)—this drug is believed to be effective against tumor growth by preventing new blood vessel formation. Unfortunately after surgery your body needs to be able to grow blood vessels so you can heal so they have to stop giving this drug before and after surgery. Trish looked this up yesterday and it is generally accepted practice to be off this drug for 4 weeks prior to surgery and another 4 weeks after. Brody last had Bevacizumab 8 days ago and if he starts his next Chemo round, he would be due to get this it again this coming Friday. We should know in the next week, how we are proceding--- the best time to pause his chemo is now as he just had his OFF chemo week so his counts will be higher for fighting infection or what not if we go with surgery in about 3 weeks (his 4^th week off of Bevacizumab). They will likely stop his Vinerolobine (given 3 out of every 4 weeks)  and oral  Cyclophosamide (he takes this orally every day) too so his counts are higher when he has the surgery. 

Anyway, that’s where we stand now. We should know more by next Friday about how we will proceed. Trish took the boys down to her sister's in Chattanooga Tennessee this weekend for the boy's cousin's birthday party and to visit... I am working this weekend after my nearly 2 weeks off for Christmas/New Years (a well needed vacation)-- I ended my vacation with 2 days of homeschooling the boys (they resumed on Jan 2nd) which makes me appreciate teachers all the more.

We are all doing as well as can be expected, we have tried to be open and honest with Brody throughout this ordeal-- when Trish told him they might be doing surgery to take out the tumor because it looked to be growing again; he was worried that it was happening that day-- when Trish told him it wouldn't be for a few weeks at least, Brody was happy again and got back to his Tablet... As kids do and as Brody illustrated-- He lives his life "in the moment" and if  we have learned anything from all this, it is to live life in the moment and cherish those moments because none of us know how many of those we will have.

Once again, We would like to thank everyone that has supported us through this ordeal and followed our blog--- concern, compassion, assistance, prayers, thoughts, words, and just listening all make this easier.

Bill & Trish

Fighting zombies

Apparently this is the preferred position for fighting zombies.

Don't sweat the cast on his leg....  Brody's physical therapist is using the cast to stretch Brody's tendons to try and alleviate his foot drop.

Not alot to report...  Boring is good at our house.

Happy Thanksgiving

Sorry it has been so long since out last post but really not alot to report.

Brody has tolerated having his right nephrostomy tube remove just fine and hasn't had any recurrence of pain that he had previously on the right side so we are relatively certain that the pain was from the tube. He had an ultrasound a week after it was removed and it showed no hydroneprosis (water on his kidney)-- Brody then had his left nephrstomy tube replaced as it had been in for nearly 2 months-- he was put under general anestesia for this but he did real good once again.

Our biggest problem lately is Brody simply feeling so good he ignores the fact he still has a nephrostomy tube on his left side. He wants to rough house and play with his brothers like any other 6 year old and we have to keep a close eye on him so he doesn't accidently rip off his dressing over his tube or pull the tube out itself.

He has continued to tolerate his chemo well and he has just started his 5th round (it follows a 28 day cycle). He is still pretty finicky about food but he has been doing a little better about eating different things. He has steadily been putting back on weight is about 44.5 pounds now-- this is about the weight he was when we first learned of his relapse.

He has been doing pretty well in home school as have all the boys.

Geordi had 2 friends over last weekend for a sleep over and the boys had fun playing and just being boys....the weather has been pretty nice for November--- so they have been playing outside enjoying the weather.... but also playing age inappropriate video games--- The boys got Call of Duty: Black Ops II on its release day.... Dad likes that they can play up to 4 player split screen for local game modes (not online) so we don't experience the "odd boy out" drama as much-- get it some when the boys play online.

We spent Thanksgiving at Trish's parents house and the boys enjoyed seeing their cousins and the rest of the family.

Thats really about it....

Bill

A Fun Time With Some Really Talented Birds

Watch "Feeding Some Very Hungry Birds" on YouTube

https://www.youtube.com/watch?v=L33iKqLvn0w&feature=youtube_gdata_player

The boys had a great time feeding birds at Parrot Mountain in Pigeon Forge,  TN.   They also had fun racing go-karts,  watching a magic show,  a circus,  and the Smokey Mountain Opry Christmas show.   We were only able to stay in Pigeon Forge,  TN for 2 days but it was 2 days packed full of fun.   They all can't wait to be able to go back again.  Hopefully we will be able to swing a trip there again next Spring or Summer. 

Trish and Boys in Tennessee

As mentioned in a previous post, Body had his right nephrostomy tube removed on Thursday. He had a some pain overnight on his back where the tube was (not where he has had pain previously) but we think it was just tender from having it removed. It only bothered him when he was laying on it. It has not bothered him since Thursday night.

 

We were concerned about "positional" blockage of his ureter obstructing the kidney draining to his bladder so we monitored his fluid ins and out for a few days and they remained close-- Friday & Saturday he had about 1400ml - 1500ml "IN" and had about 200 ml less then this "out" both days. This is close enough that we weren't too concerned about obstruction-- he went pretty regularly throughout the day and at night too.

 

Brody's left kidney is still not producing much (this kidney-- if we assume all the urine it produces flows into the bag oly produces about 1/10th as much as his right) and any time we have capped off the tube he starts having pain within a few hours as the pressure in the kidney builds up. He is scheduled to have this tube replaced on Thursday.

 

Trish and the boys left Sunday morning and got down to Pigeon Forge Tennessee about 9 pm... they rented a cabin there and were supposed to meet Trish's mom there who was coming back up from Chattanooga Tennessee after visiting Trish's sister. They will be there until Wednesday. Hopefully they have nice weather. I have to stay home and work this week-- we are having a maintenance outage (6 days) starting Tuesday and there wasn't any chance I was going to be able to take time off this week.

 

We changed Brody's dressings on Saturday-- the hole where his right nephrostomy tube was looked to be nearly completly healed but we put a small dressing back on it for now... should be healed up well enough to remove by now but the dressing on his left tube is partially overlapping it so we will likely just leave this on until thursday unless he has to have it changed before then (if it starts coming off or what not)-- Brody does NOT like the tape coming off.

 

Not much else to report-- the boys have been doing pretty well in their homeschooling and are hopefully enjoying their fall break.

 

Bill

 

 

The Boys Attempting to Find Some Candy from a Friendly Chipmunk... like they need anymore

The Boys Enjoying Trick-or-Treating Despite the COLD and Rain

Brody Had His Right Nephrostomy Tube Removed Today

Brody had several episodes of pain on his right side while trying to Trick- or-Treat last night.   Then he had problems overnight and awoke this morning with a lot of blood in his nephrostomy bag/tube on his right side.   I took him to the hospital.   They had us go to interventional radiology when we got there where they injected dye in Brody's tube and watched to see if the dye could make it all the way to his bladder in a non-obstructed manner.   Right-side,  they said,  appeared to flow fine with no obstruction and so they were able to pull the tube on the right side.   YAY!!!!  The left tube is not ready to come out so he still has that one.   Fortunately he has not been having problems/pain on his left side with that tube in.   Since Brody's right tube is out he has had no more pain on his right side and he has been far more active,  jumping,  climbing,  running,  spinning and just all around a very excited boy to be able to move without pain.  He did not enjoy getting the tube out at all though.   He said,  "it's always a lie when they tell you it's not going to hurt.   It just means it's gonna hurt a whole lot and it did! "  Poor kid.   He really has been through so many,  many episodes of painful situations.   Next week,  he has to have his left side tube replaced.  They aren't meant to be in as long as he has had this one in.   He will get general anesthesia for the replacement procedure,  thank goodness.   I am nervous about the left side being replaced.   He has not had problems with the left side.   I believe,  if it's not broke,  don't fix it could apply here.   I am afraid maybe if they replace it that maybe it won't be placed as well as this left one has been and it might become painful for him too.   I don't think his doctors believed it was his right nephrostomy tube causing him all the pain he has been having for so many weeks until today when it was far more obvious it was a problem and then saw how much better he felt when it came out.   I guess we gotta do what gotta do.   Keeping them in too long could increase chance of infections and the tube becoming obstructed.   It still makes me nervous though. 

The boys did have a great time trick-or-treating at Camp Miakonda (Cub Scouts camp)  last weekend.   There were lots of haunted cabins,  fun games,  and a haunted hayride.   They also went out Halloween night trick-or-treating.   It was a very chilly night and oh my goodness did they score a loot of candy.    Brody,  fortunately,  felt good for little while trick-or-treating before his pain and the cold got to him.   He feels so much better now.  

Let's hope that he doesn't have any issues with the tube being out and that he heals-up ok where his tube had been in for so long. .   We will be keeping close tabs on his ins and outs and he will get an ultrasound tomorrow while he's at the hospital for chemo to check for any possible hydronephrosis (fluid around kidney).   As long as his ins and outs are staying about equal and his ultrasound is clear and he doesn't start developing pain in his abdomen or back and he doesn't have significant fluid coming out the wound in his back where his tube was,  then he's a go to not need the tube on the right side anymore/will not need to have the right tube replaced.  

The boys and I were planning to leave for a short trip to Gatlinburg,  TN tomorrow after Brody finished chemo in the morning.  But we will need to hold-off on that for a bit until Brody goes at least a few days with flying colors without his right tube in place.   I don't want to be very far away from home and then Brody starts having issues.  Hopefully we will be able to go soon.   We were all really looking forward to the trip.