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.   

Not alot to report

Pretty uneventful week. Brody's side pain has persisted but is not to frequent. As Trish mentioned the CT showed the tumor to be looking the same. Brody seems to have recovered from his C. diff infection-- he had some persistant diarhea but it has subsided and we are back to giving him Miralax to keep his stools soft as it can be painful to pass them if they are too hard.

Brody's weight is up to almost 44 pounds now-- he was down to less then 40 a few months ago and his appetite is pretty good most of the time although he is still kind of finicky... he had me bring him a McD's cheeseburger with fries for dinner yesterday and he chased these with 2 pieces of french toast (ate it all).

To try and increase his nutrient intake Trish bought a good juicer last week-- Brody seems to like to make the juice but doesn't care to drink it too much-- everyone else loves it-- I think it might be more of the "pulp" in the juice (texture) rather then the taste of it. Hopefully it will grow on him. We have explained to him that drinking it can help him fight the cancer so he has been drinking it anyway.

Thats pretty much it... we have been continuing to homeschool the boys and other then a few behavioral hiccups-- all is going pretty well with that... There is actually quite a few educational videos on Netflix that we have been utilizing to help supplement our science and history.

Brody's CT Scan Today Showed Brody's Tumor is Staying About the Same Size

Brody has been having pain on his right side (not on his back or belly) right over his right kidney.   The pain is not constant but rather comes and goes but is always in the same spot.   Brody pointed to the spot where it hurts during an ultrasound and the ultrasound tech moved the wand over the area he stated was hurting.   His right kidney was in that area.   Brody still has nephrostomy tubes on both sides.   His right kidney is his good kidney and his left one does not seem to have very much function.   The doctor ordered a CT scan for today and also a nephrostogram to try to determine the cause of the pain Brody keeps having.   The CT scan was ordered to get a picture of whether the tumor has changed or not.   The nephrostogram was ordered to determine if the tubes are still in place where they should be or not and to gage how obstructed or unobstructed his ureters are.   The CT scan showed that the tumor is about the same size as it was last time according to our oncologist but it has not yet been reviewed by the radiologist.   The nephrostogram showed that the tubes are placed correctly and that no stitches have come loose that would allow the tubes to slip or wiggle and cause pain.   They did not see the dye flow through the urterers to the bladder though which means,  in the position Brody was laying,  at least for this test,  his ureterers are likely still obstructed.  Brody has had his tubes in for awhile now since being replaced the last time.   They plan to replace the tubes again within next couple of weeks.   They will evaluate again at that time if Brody's urterers are still obstructed or not.   
So we didn't get any really bad news today and I was relieved to hear the CT scan results.   But we still do not have an answer as to why Brody keeps repeatedly and more frequently having recurring sharp pains in the same spot.   Interventional Radiology staff decided to try doing the dressings around his nephrostomy tubes a little different though to see if this change could help the tubes move around less in case the little bit of wiggling he does have with the tubes is causing the pain.   He has not complained of the pain since they changed how the dressings are placed around the tube.   Hopefully,  this is why he has been having the pain and the new way of doing the dressings helps.  

Brody Has Been Feeling Very Good Despite C. Diff. Infection

As Bill indicated in a previous post,  Brody has been dealing with a C.  Diff. (clostridium difficile)   infection.   This type of bacterial infection of the gastrointestinal tract is more likely to occur and can be very dangerous in patients that have had lots of previous antibiotics exposure and/or compromised immune system function.   Brody has definitely been exposed to many antibiotics recently and his immune system is weaker than most due to the chemo he must take.   Without the competition from healthy gut flora (beneficial/healthy bacteria that line the gastrointestinal tract) that have been killed off by multiple antibiotics,   the c.  diff.  bacteria can easily overgrow and cause significant harm to the gastrointestinal tract.   The bacteria releases a toxin that breaks down the cells of the gastrointestinal tract and can cause severe diarrhea and vomiting.   Brody has been taking an antibiotic called Flagyl (metronidazole)  every 6 hours since he was diagnosed with a c.  diff.  infection.   Overall,  fortunately the diarrhea has not been too bad so far and vomiting has not been a problem.   However,  each bowel movement had been fairly scary since each involves pain and some blood in his stools.   Today,  though I did not observe any obvious blood in his stools.   Hopefully this means he is about to kick this c. diff.  infection.   I have heard and seen a few horror stories associated with c. diff.  which of course means I've been a little more worried than usual this week.   Obviously I try not to let my worries of what could happen keep us from enjoying each day though.    If Brody feels fine (and he has,  really) then we just try to live or lives,  have fun and not let our worries intefere with it all.   Life,  unfortunately,  is just to short to dwell on things you cannot control.   Sometimes you just have to tell yourself everything is going to be just fine and commit yourself to believing that and then somehow it just seems to be just fine.   The power of the mind and concentrating on the positives can be amazing.  

Geordi in front of Ruby Falls

Visited Ruby Falls Today for Geordi's Birthday

We celebrated Geordi's 10 year old birthday at Ruby Falls today.   I had taken Geordi and Jaden there once before about 5 years ago but they couldn't remember it very well and so really wanted to go again.   It was a rainy,  cold day in Chattanooga today so this adventure moved to the top of several ideas of things he wanted to do on his birthday.   I still can not believe he's 10 already.   Where has the time gone?  

Hayride back after finding a pumpkin that was "just right"

Watch "Cannon Balls into Corn Crib" on YouTube

https://www.youtube.com/watch?v=CG-IDIyyapc&feature=youtube_gdata_player

Watch "Brody enjoying slide at Old McDonald's Farm" on YouTube

https://www.youtube.com/watch?v=zJT8iXDFfvI&feature=youtube_gdata_player

We had a great time at Old McDonald's Farm

We enjoyed the day at Old McDonald's Farm.   Hayride,  awesome slides,  picking pumpkins,  corn maze,  hay maze,  pumpkin slinging,   inflatable horse racing,  and spending time with family all equates to a wonderfully fun afternoon in TN.

Finally got 'em all to sit still for a few mins for a group pic on top of Signal Mountain at Signal Point

We finally got to meet Brody's cousin, Lila

They've been bitten by zombies

Brody had a great time on the slide with his cousin Ava

Brody and Ava rode this slide together only about 100 times.

Watch "Brody on the Zip-Line at the Coolest Playground" on YouTube

https://www.youtube.com/watch?v=-dEgh7NuMRA&feature=youtube_gdata_player

Having a great time in TN with his cousins

Pics

Not a pic posing day- getting ready to watch "ParaNorman" on Tuesday

More of his pic posing day-- on Maumee River near Grand Rapids Ohio... about 10 minute drive from our house

Another Busy Week

We all had another busy week. As always, Homeschooling the boys is a chore and a joy. Easy and fun when they will listen, frustrating when not.

Brody's right nephrostomy tube was capped until wednesday. On wednesday Brody didn't feel too good. He vomited and was tired and wanted to take a nap-- we went ahead and hooked his nephrostomy bag back up to his tube (in case this was making him feel bad). When he woke he had a slight fever-- almost 101 which had us nervous enough to call Brody's Oncologist and get Brody admitted Wednesday night-- they took blood, urine, and stool cultures-- by the time he got to the hospital his fever was gone and he was feeling fine. Him and Trish got to bed about midnight.

His blood and urine came back fine but his stool showed a potentially dangerous bacteria (Trish can tell you more about this if she gets time)-- so they started him on an antibiotic that works well on it. His counts were low (normal low for the chemo he has been on) but not so low he couldn't start his next chemo round. Since he was feeling fine and his counts were high enough they gave him his normal IV chemo on Thursday rather then hanging out late in the day on Friday too.  Dad (me) stayed the night on Thursday night-- the doctor wrote his discharge out about 8 am Friday morning and we just had to wait for Brody to wake up to get out of there-- he woke up about 10:45am (he was up till almost midnight thursday watching Phineas and Ferb) and we were out of there before noon.

He did have an ultrasound of his kidneys on Thursday but we did not expect any hydro nephrosis (water around the kidney) since he had his bags back on. We will likely try capping them again in a week or so.

Brody is feeling fine but has to take an oral antibiotic every 6 hours which has a bad after taste-- he hates it but our tough guy takes it without a problem... he has been chasing it with "red stuff", grape juice, and goldfish crackers to get rid of the taste. Thankfully the amount he has to take is small (3 ml)

He has been feeling fine since Wednesday evening.

Trish's post about Brody's words reminded me of his other Brodyisms for his meds... which we use with him too when we tell him what we are giving him.

"No throw-up medicine" is Zofran (for Nausea)
"Swish and spit" is Nystatin (this is swished in his mouth and spit- this is to prevent thrush)
"Pink Medicine" is Bactrim (this antibiotic prevents him from getting pneumonia)
"New Medicine" is Oral Cyclophosmide (this is the chemo drug he takes daily under his latest regimen)-- was new in July when he started and it has stuck.
"Other new medicine" is the new antibiotic he is taking for his GI infection-- for 8 more days.

And his latest Brodyism is "Easy-Peasy" which he usually says when we tell him it's time to take a particular med that tastes bad but he can now take without "psyching himself up" before hand-- for alot of his meds, when they were new he would get himself all worked up and worried about it tasting bad so much that he would be so worried about throwing up he would throw up....this was a big problem the first time he was treated and any time since then he had to start a new oral med.

Anyway-- next Friday is his "off" week, he only has to go in for labs--- he starts his next chemo round the Friday after next (it is a cycle that repeats every 4 weeks)- he is just over 1/2 way through his 3rd round.

Here is hoping we have an uneventful week-- at our house generally speaking, no news is good news.

Bill

The only thing Brody wants to drink today so far is "Monkey Drink"

Brody with his "Monkey Drink"

Brody kept me puzzled for hours trying to figure out what he wanted to drink.   He kept saying he wanted a "monkey drink. "  After about an hour of me trying to guess what he wanted,  I finally offered to take him to Kroger's grocery store so he could just show me what he wanted.   We were there for a long,  long time before he finally found what he was looking for.   Danimals strawberry yogurt smoothies with a monkey picture on the container,  I learned,   equals "Monkey Drink. " 

Brody has come up with many of his own terms that kept us busy for quite awhile trying to figure out what he wanted.   A "Messy Sandwich" equals an Arby's roast beef sandwich with cheddar cheese.   A "red meal" equals a Banquet frozen Salisbury steak meal.   And "red stuff" equals red Powerade Zero.   "Rectangles" equals Lipton chicken flavored noodles.   That's just a few of them.   Usually it's an ah,  hah moment when you fnally figure it out and usually it makes total sense why he calls it what he comes up with.  

One of my favorite expressions from Brody is "leave me lonely" or "I want to be lonely. "  This is Brody's way of saying,  "I want some privacy. "  I just recently explained the word privacy to him and he has started to use this term now instead.   It kinda makes me sad to not hear "I want to be lonely" anymore.   It was just so cute.  

Brody Really Enjoyed His Aunt Theresa and Aunt Luanne Visiting for the Week from California

Brody's Aunt Theresa and Aunt Luanne (2 of Bill's sisters; he has one more sister and 2 brothers) traveled from California to come stay with us for a week.  Bill and I took the week off work so we could all vacation together close to home while they were here.   Brody and Jaden finally got to meet Theresa and Luanne.  Geordi finally got to know them a little better.  Geordi was just a baby the last time we made it out to California.  Luanne visited Geordi in Ohio when Geordi was 6 weeks old and then Bill, Geordi and I traveled to California to visit our family there just after Geordi's first birthday.  (Geordi will be 10 years old next week.).  Anyhow,  it had been a very long time since we had gotten to visit with any of our family from California.  Thank goodness for Facebook, blogs, e-mails and phonecalls through all these years but in-person is so much better.    We all had a fun week together close to home.  We went hiking and played at the park in Grand Rapids, Ohio.  We went bowling and played laser tag and watched movies together.  We spent a day at Cedar Point.  It was a bit chilly with brief scattered rain showers the day we went to Cedar Point.  This turned out to be a great day to go to Cedar Point.  The chill in the air and the occasional rain showers scared most people away from Cedar Point, I guess.  We were able to walk right onto most the rides at the park or had only very short lines.  Top Thrill Dragster, Millenium Force, Iron Dragon and pretty much anything we wanted to ride had no lines whatsoever.  We rode the train during one downpour and watched Brody on the bumper cars duing another rain shower.  We managed to stay mostly dry and warm and greatly enjoyed no lines and each other's company.  Brody was a big fan of the Iron Dragon.  He just barely made the height requirement of 46 inches.  The Iron Dragon was a pretty big roller coaster for our little roller coaster fan.  He rode it many, many times.  We also spent a day visiting the African Wildlife Safari (and fed those giraffes again) and Put in Bay and Maumee Bay State Park.  It was a busy, busy week of fun. 

 

Brody has been continuing to feel very good.  He has had so much more energy these last few weeks.   Watching him, one would never think he has cancer and is actively taking chemo.  Brody has been peeing larger and larger volumes of urine more frequently the last couple of weeks.  On Friday we were told to go ahead and try capping Brody's nephostomy tubes to see if he is able to do without his nephostomy bags.   Brody has 2 nephrostomy tubes.  One coming out of his back from each kidney.  These tubes are connected to bags which the urine drains into.  Brody's tumor was so large that it was blocking his urine from traveling from his kidneys through his urterers and into his bladder.  When Brody's tumor was larger he was not able to pee at all and he had the nephrostomy tubes placed.  Now that Brody has been able to pee again, the hope is for Brody to be able to get rid of his nephrostomy tubes soon.  So we were basically told this weekend to remove his bags that the tubes drain the urine into and then screw a cap onto the ends of the tubes instead.  Then we have to wait and see if Brody is having any pain in his back or any new pains or any urine draining out his back onto his dressings on his back for his nephrostomy tubes.  We have to measure the volume of all his urine output and all fluids he intakes.  The two should be roughly equal.  As long as Brody's output and input are close and Brody's is not having any pain or urine leaking onto his back, then he will have an ultrasound Monday morning to look for any fluid around his kidneys and if no fluid around kidneys then he could get his nephrostomy tubes out.  We started measuring Brody's ins and outs at 3:30pm on Friday and left his bags attached and just kept monitoring ins and outs for 24 hours so that we could have a feel for what is normal for Brody.  On Saturday at 3:30pm, I removed the bags and screwed the caps on instead.  I kept up with measuring all the ins and outs.  Brody was doing very well until about 10:30pm.  He started saying that his back on his left side in the area of his nephrostomy tube on that side was really starting to hurt.  He asked to have his bags put back on.  He said his right side was not hurting at all though.  So we put the bag back on the left side instead of the cap.  We left the right side capped.  Brody said his left side starting feeling better almost as soon as we put the bag back on.  Urine did start draining out the left side as soon as we had removed the cap.  It's 2am now and Brody is sleeping soundly with no complaints so far about his right side.  Let's hope he continues to do well with the right side at least.  Even just getting one of the nephrostomy tubes out is a good thing.  They are a huge infection risk.  Of course we would love him to be able to get both out (he loves to be in the water and cannot be with nephrostomy tube(s)) but at least we're making progress if it turns out only the right side is ready to come out. 

 

Well I had better attempt to get some shut-eye.  More later.....

Brody actually posed for pictures today. Wow!!

Brody cudding with his dogs

Good CT Scan Results Today

Brody had a CT scan today (Tuesday).  We got good news that the tumor has not gotten larger since the last CT scan.  It's about the same size as it was at the last CT scan.  We were also told that the tumor has a "rind" around it this time wheras before it did not.  Having a "rind" around the tumor makes it more difficult for the tumor to spread to other tissues.  Also having this more clearly defined margin around the tumor rather than an undefined margin can indicate less actively growing and spreading tumor.  So we are considering all of this to be excellent news. 

 

Brody has been handling his new chemo regimen very well.  It has been the most tolerable regimen he has ever had.  Fortunately, it also seems to be working much better than others that have been far more grueling.  Brody's hair is coming back in very quickly.  His eyebrows are back and his eyelashes are getting long.  The hair on top his head is getting much thicker and longer.  It seems to be coming in a darker color now than before.  Overall, most of the time Brody feels pretty good lately.  Bowel movements can still be quite painful sometimes though.  We are keeping him well-hydrated and trying to keep his stools very soft to help with these.  He is getting more and more control of his bowels too.    Usually makes it to the potty now.  Brody does still have his nephrostomy tubes in place.  He is able to pee on his own lately though with both frequency and volume of urine excreted the normal way increasing.  We are taking this a sign that the tumor is not pressing on his kidneys and urterers as much as it was previously.  The CT scan that was done today did not show the detail they need to determine if Brody could possibly have the nephrostomy tubes removed.  Our physician will be talking with interventional radiology team about getting better images to determine if this is a possibilityyet. We should hear more about this when we are back at the hospital on Friday for more chemo. 

 

Anyhow, we were very relieved to hear the results we got today.  Let's hope and pray that the good news just keeps on coming.

 

 

 

Brody at curesearch walk

Our team raised over $6000.. Thanks to all the walkers and donors.

Brody Thinks the Super Slide at the Fair is Awesome

Brody Had A Good Time at the Fair This Week

Brody has been continuing to feel pretty good most of the time.  We went to the Fulton County Fair a couple times this week.   The boys rode several rides over and over and over again.  Brody tried a funnel cake for the first time at the Fair.  After one bite, he decided it was all his and nobody else was to have anymore of the funnel cake.   Oh well, we had plenty of other yummies to enjoy too.  It's a pretty rare event that Brody is excited about eating something.  We were all just happy to see him want to eat something. 

 

Tomorrow we will be participating in the Toledo CureSearch Walk to support research for Childrens' Cancers.  We are hoping the rain and thunderstorms clear-out before walk time.  Rain or shine we will be happy to support CureSearch though.  Thank you to all the friends and family that are supporting Team Brodinator at the CureSearch walk tomorrow.

 

 

Still feeling good

Brody has continued feeling good. Other then his depleted counts a few weeks ago and the infection, he has felt pretty good. The chemo he is on is less toxic and as a result we see that his hair is starting to come back in (very short but definitely coming in).

Trish took the boys to the Fulton County fair on Sunday while I was working-- boys had a good time.

Not alot more to report-- at our house, no news is good news.

Feeling good

Brody has been feeling well this week.  Not a lot to report.  We have been getting back into our HOME schooling routine (rather then hospital schooling) . He has resumed taking his cyclophosmide and we are now doing Neupogen shots on Mondays and Thursdays to keep his counts up. Brody is at hospital for labs and chemo today with Trish and I am working today. It should be a quick appointment....  I'm relatively certain this drug is a push (meaning he doesn't have to get it infused over an hour or more)...  His wait should be only for his labs to come back before they give him his chemo.

Not much else going on with us...

Brody's Home.....YAY!!!!

Brody surprised us all with a great big improvement in his white blood cell count this morning (Monday morning).  His counts were high enough for him to come home!!!  He was sooo excited when he got the news this morning.  And he was one busy little boy playing and running all over the house when he did get home.  He did make his brothers take "rest breaks" but he was up and playing hard with them again after each little rest.  Wonderful to see him feeling so much better.  And, it's so good to be home, finally. 

 

Brody will continue with his normal at home meds including his daily chemo that he had been off of for awhile due to the infection.  But he will now be taking Neupogen injections at home twice a week to help keep his white blood cell count from bottoming out again.   Brody will be back at the hospital next on Friday for IV chemo and labs.   We will be enjoying just being home this week. 

 

 

 

 

Brody is feeling better today but still has to stay in the hospital for now

Brody has been feeling much better today.   He has had much more energy,  laughing and goofing around with his brothers,  sitting up on couch most of the day (rather than lying in bed),  and even took a fairly long walk through the halls at the hospital today.   I enjoyed seeing Brody return to his usual self today.   The urine cultures are still negative from Friday and Saturday.   And,  Brody has not had anymore high fevers since Saturday morning.   So that's all good stuff.   Brody's white blood cell count is still extremely low though (pretty much zero).   He can't go home until he has an ANC of at least 500 and so he's not anywhere close to that yet.   Brody will be continuing with the IV antibiotics and Neupogen injections (to help increase his white blood cells).   Brody is greatly missing being home.   So hope the white blood cell count starts heading in the right direction soon and that the infection stays away.  

Brody is still in the hospital

Brody spiked another temperature this morning (Sat morning) and his urine cultures (urine collected from his nephrostomy tubes) that were collected on Thursday came back positive for bacterial growth.   And,  his white blood cell counts have plummeted to virtually nothing.   So he is still not able to come home.   He needs to have at least 48 hours with no high fevers,  no positive cultures,  and an ANC of at least 500 before he can come home.   I am always worried about Brody but of course now I am really worried about this infection that does not seem to want to go away on top of everything else.   Scary.   The plan is to continue with the slew of antibiotics and also the Neupogen injections to help increase his white blood cell counts which are so important for infections.   Let's hope things start kicking the infection soon and that Brody can finally come home.   Despite the infection and fevers and the surgery to replace the tubes and wanting to go home very badly,  Brody has remained in good spirits.  Overall he has been feeling ok too and basically tolerating everything pretty well.    I am quite thankful for that.  

Missing Brody

I am laying in my own bed for the first time in over a week.  It feels so comfy compared to the air mattress I have been sleeping on at the hospital this week or the "couch" in the camper I was sleeping on during the camping trip we were on just before Brody started spiking his high fevers.   I'm cuddling up with Chewy and Tori (our dogs) I've been missing all week too.   But it just doesn't feel like I'm home though without Brody here.   I know he really wants to be home and cuddling with his dogs and sleeping in his own bed too.   So wish he could be home.   At least Bill is getting the chance to spend some one on one time with Brody tonight before Bill heads back to work tomorrow to make-up some of the hours he missed while at the hospital this week for Brody's surgery.   I love you and miss you already Brody even though it's only been a few hours since I saw you.  

Making Play-doh Snakes

Painting Wooden Airplanes

Brody's in there somewhere, lol!

Fri Night

Brody feeling ok,  Got some chemo today...  No issues.  Still getting IV antibiotics for a few more days and Neupogen shots to help raise his counts enough to continue his oral chemo Cyclophosmide.  Mom and brothers just left for night. Brody is chillin' with some chicken nuggets and Spongebob in Netflix. He generally has a good appetite about bed time...  Asking for more so I have to cut this short.

Bill

Team Brodinator Walk to Conquer Childhood Cancer T-Shirt Fundraiser to Benefit CureSearch for Children's Cancer

Order your TEAM BRODINATOR T-Shirt today to show your support for Brody Pizzifred and all children battling childhood cancer.  All proceeds generated from the sales of TEAM BRODINATOR T-shirts will be donated to CureSearch for Children's Cancer.

TO ORDER:  Contact Tricia Pizzifred (Brody's Mom) with the following information no later than August 29^th, 2012. 

1.  Name
2. Address
3. Phone
4. E-mail
5. Number of T-shirts and sizes needed
6. Indicate if you would like to have your T-shirt shipped or if you would like to pick up at the Toledo CureSearch Walk from Tricia or indicate other preference.
7. Indicate your preferred payment method.  Tricia can e-mail you an invoice so that you can pay via credit card, Paypal, or check.  Or Tricia can mail you an invoice so you can pay via check in the mail.  Or you can pay Tricia in cash or check in person.
   

All Team Brodinator T-shirts will be Royal Blue with Gold and White print.  The Gold ribbon represents Childhood Cancer Awareness.  Let's help make Gold the new Pink!  The back-side of the t-shirt will have TEAM BRODINATOR printed in white lettering.  We designed the t-shirt for the walk this year during one of our recent home school Art classes. 

PRICE:

1. $12.00 if not shipping

2. $17.00 if shipping within U.S

3.  $12.00 plus shipping costs for outside U.S

Tricia's Contact Info

Phone or Text: 419-304-6784

E-mail: triciapizzifred@yahoo.com

Fax: 888-363-3695

TEAM BRODINATOR will be participating in the Curesearch Walk in Toledo, Ohio again this year. We are seeking friends and family willing to join our team and/or donate to Curesearch.  TEAM BRODINATOR was started to show support for Brody Pizzifred and all children who have been affected by Childhood Cancer.  Brody was diagnosed with rhabdomyosarcoma in March of 2010 a few days after his fourth birthday. He was treated for about a year with a combination of chemo, multiple surgeries and radiation treatments. He enjoyed a year of remission from the disease. Unfortunately, the cancer has recurred. We received this devastating news on April 30^th, 2012. Recurrent rhabdomyosarcoma has an extremely poor prognosis. CureSearch for Chidren's Cancer supports children's cancer research.  Brody is one of many children battling one of the many types of childhood cancer in great need of more research.   Join us at the Toledo CureSearch Walk on Sept 8th, 2012 as we celebrate and honor children from the Toledo area who have been affected by children's cancer. This very special day will include prizes, music, food, and fun activities for the entire family! Please encourage your friends and family to join us as we raise funds to reach the day when every child with cancer is guaranteed a cure! Register for the walk today or donate to Curesearch to support children's cancer research!

For more information on the Toledo CureSearch Walk, to join Team Brodinator, and/or donate to CureSearch for Children's Cancer, please go to:

http://www.curesearchwalk.org/toledo/Brodinator  or http://www.curesearchwalk.org

Brody Had Surgery Today to Replace Both Nephrostomy Tubes

Brody had surgery today to replace both nephrostomy tubes.  He was admitted to the hospital on Sunday night for very high fevers.  They did blood cultures and urine cultures on Sunday night and Monday.  This morning we got the news that he was positive for Pseudomonas and Enterococcus in the urine collected from his nephrostomy tubes.  We were told that it can be very difficult to erradicate these organisms and that the nephrostomy tubes had to be replaced.  He had the surgery this afternoon and he is feeling very good now.  He is having only very minor pain this evening.  He has also been eating fairly well tonight.  Brody was started on IV antibiotic on Sunday evening.  They have added on a couple more IV antibiotics today to provide even broader coverage against the bacteria.  We do not yet know the exact strains of bacteria nor when Brody may be allowed to come home.  Fortunately Brody has not had anymore high fevers since Monday morning.  So at least it seems he is responding the IV antibiotics that have already started.  Brody has not been able to take his chemo that he normally takes at home everyday since his white blood cell counts are low and he has bacterial infection.  This evening he is starting Neupogen injections to help boost his white blood cell count.  They plan to give Brody his IV chemo on Friday even if his counts are still low.  The ones he is due for Friday do not tend to drop his counts as much as the one he normally takes at home everyday.  Brody having serious bacterial infection is scary and so is holding his chemo so that he can fight the infection.  Do not want the tumor to have a chance to make head-way again in the wrong direction. At least Brody's infection does seem to be susceptible to the antibiotics so far though and the Neupogen should help us be able to get back on track sooner with his chemo. 

Back in Hospital

Brody developed a low grade fever yesterday that soiked to 103 last night. He also been tired and coughing.  When that happens they admit Brody for antibiotics and labs.  Trish and Brody came in last night. Brody got a chest xray to check his lungs.  Had a small fever earlier today.  Will likely be here a few days.  His counts are low so he will be skipping his oral cyclophosmide today.

Geordi and Jaden did home school with me (Bill)  today at the hospital ...  We gave Brody the day off.  Boys did pretty good.  Finally realizing they finish faster if they don't argue.

Boys had alot of fun this weekend camping..  Sorry i missed it.

Writing this from my pbone so will be cutting this short.

More later,

Bill

Good CT Scan Results Today!

Brody had a CT scan today and we got results back right away.   The tumor is getting smaller.   It's about 1cm smaller than it was at his last CT scan and since starting the new Chemo Regimen after failing on previous ones.   And Brody has been feeling wonderful this week.  

We are celebrating the wonderful news and enjoying the fact that Brody is feeling so much better by camping at a nearby campgrond right on the river shore.   My Dad came up for the weekend and brought his camper with him.   Unfortunately Bill has to work all weekend but at least he can hang with us for a few hours in the evening.  

So excited about the CT scan results and it feels so good to see Brody feeling so much better.   YAY!!!!!!!!!!

September is Coming and So is the CureSearch Walk. September is Childhood Cancer Awareness Month. Support CureSearch and Help Save Lives of Children witth Cancer

September is Childhood Cancer Awareness month.  Childhood cancer takes the lives of more children than any other disease in the U.S.  More than 13,500 children are diagnosed with cancer each year and nearly 25% of children diagnosed with cancer will die within 5 years of the diagnosis.  Three out five childhood cancer survivors suffer from long-term side effects.  The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of cancer.   The objective of Childhood Cancer Awareness Month is to put a spotlight on the types of cancer that largely affect children and to help raise funds for research and family support. 

  Children with cancer cannot be treated simply as "smaller adults." First, the cancers that strike them are very different from the more common adult cancers, having different causes and needing different treatments. Also, children are being treated while in crucial stages of the development of their bodies and minds, complicating the effects of treatments and often resulting in life-long complications. 

 Federal funding for childhood cancer research is predominantly allocated through the National Cancer Institute (NCI).  Each year, Congress approves the amount of money that the National Institute of Health will receive for research initiatives.  Cancer will be funded in 2012 at $5.4 billion.  In 2010, the NCI reported funding for childhood cancer research was approximately $197 million.  However, this estimate could be regarded as liberal as some of the associated research may not be perceived as directly benefiting childhood cancer.  Other more conservative estimates put federal childhood cancer research funding as low as $30 million annually. 

 To put this into perspective, the NCI allocated $631 million on breast cancer research in 2010.  Other NIH Institutes funded breast cancer at a level of $133 million; and the Department of Defense, which also supports breast cancer research allocated an additional $150 million.  As a comparison, breast cancer with its overall survival rate of close to 90% and average age of diagnosis of 61 received $914 million in Federal research funding in 2010.  This was in addition to the funds raised by breast cancer organizations through their pink ribbon campaigns and private donations.  It is estimated that the success of these campaigns raises approximately $256 million annually in the combined assets of the top four breast cancer organizations.  The success of the pink ribbon campaign and its resulting funding for breast cancer research has resulted in an increase in the 5 year survival rate of that patient population.  Their strength as advocates has resulted in a strong position for both federal and private research funding. 

 September is Childhood Cancer Awareness Month.  It is a time to increase the awareness of the incidence and devastation of this disease on America’s children.  By raising awareness of the fact that childhood cancer remains the number one disease killer of America’s children, we can raise the awareness of the need for greater research funding.  Like breast cancer, childhood cancer has an international symbol, the gold ribbon.  Proudly wear a gold ribbon and help increase childhood cancer awareness and support.  Help make the Childhood Cancer Awareness Gold Ribbon, the new Pink!

 In addition to wearing a Gold Ribbon in September, consider participating in the upcoming Toledo CureSearch Walk for Children’s Cancer on Sept 8^th, 2012.  Funds raised from the CureSearch walk will directly benefit children’s cancer research.  Brody has formed a team for the Toledo CureSearch Walk.    Brody was diagnosed in March of 2010 with rhabdomyosarcoma (a relatively rare form of cancer but much more common in children than adults).  He was treated for about year with a combination of chemo, multiple surgeries and radiation treatments.  He enjoyed a year of remission from the disease.  Unfortunately, the cancer has recurred.  We received this devastating news on April 30^th, 2012.  Recurrent rhabdomyosarcoma has an extremely poor prognosis.  The five year survival for children with recurrent rhabdomyosarcoma is less than 5-10%.  More than 50% of children with recurrent rhabdomyosarcoma will succumb to the disease within less than a year.  Brody would not be here with us today without the research efforts of the Children’s Oncology Group (COG). The COG is the world’s largest organization devoted exclusively to childhood and adolescent cancer research.  Today, more than 90% of the 13,500 children diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions.  The COG has nearly 100 active clinical trials open at any given time.  These trials include front-line treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these disease, and trials involving new and emerging treatments, supportive care, and survivorship.   The COG receives funding from the NCI, private donations and organizations such as CureSearch for Children’s Cancer.  Brody would love to have your support at the Toledo CureSearch Walk this year.  We have detailed information on the upcoming Toledo CureSearch Walk in a previous blog post.  Please see it for more details concerning the Toledo CureSearch Walk.  Every donation to CureSearch helps.  Even if you do not live in the Toledo area you can still help support Team Brodinator and Toledo CureSearch walk.  It’s a great cause.  Together we can all make a big impact. 

Sources: www.Childcancer.org and www.candlelighters.org and www.children’soncologygroup.org

 

Doing ok

Brody went to hospital on Friday for labs (which were good) and Chemo. No nausea and we were out of there in about 3 hours this time. Brody has continued to take a chemo drug (cyclophosmide) orally each day and has been doing good about taking it.... he doesn't like the taste but is used to it enough that it doesn't cause any anxiety anymore. He just toughs it out.

Brody doesn't have any IV chemo next Friday but is going in for labs and another CT to see how this chemo is working.

Boys started doing home school last Wednesday-- still adjusting to this-- they are very easily distracted and seem to think they can interrupt our schedule at any time "I'm hungry" -- they argue about some of the assignments and are making the school day take longer then it needs to be... need to get them motivated to finish.

Finally cooled off some- has been a very hot summer for northwest Ohio and August is usually pretty bad. Jaden and Geordi got bb guns in the last year from their grandpa (Trish's dad)-- not any good spots in out yard to shoot them though-- our neighbor's yard borders the woods and Trish when out with a saw and cut some of the branches out of the way so the boys had a clear line of sight out to the woods and then hung some targets from clothes line (a few milk jugs, powerade bottle, and an aluminum can)-- the boys spent about an hour shooting at them.

Brody isn't nearly as good with the real gun as he is at call of duty on the PS3.... but still had fun. Geordi was already a decent shot (he did some bb gun shooting in cubscouts). Jaden was having some problems at first with his "pump action" shotgun bb gun at first since it doesn't really have a sight on the barrel.  He did much better with Geordi's Red Ryder bb gun.

Other then that-- not a lot to report. We continue to focus on having fun as much as we can.

More later

Join TEAM BRODINATOR in the CURESEARCH WALK in Toledo, Ohio on Sept 8th, 2012

We will be participating in the Curesearch Walk in Toledo, Ohio again this year.  We are seeking friends and family willing to join our team, TEAM BRODINATOR,  and/or donate to Curesearch.  Join us as we celebrate and honor children from the Toledo area who have been affected by children's cancer. This very special day will include prizes, music, food, and fun activities for the entire family! Please encourage your friends and family to join us as we raise funds to reach the day when every child with cancer is guaranteed a cure! Register for the walk today or donate to Curesearch to support children's cancer research!

The Toledo Curesearch Walk will be held Sept 8^th, 2012.

Pearson Metropark

761 Lallendorf Rd.

Oregon, OH 43616

Registration/Check-in

10am-11am Sept 8^th, 2012

Opening Ceremony and Walk

11am-1pm  Sept 8^th, 2012


Registration is $10.00 for Walkers  Ages 16 and Up  and Free for those 15 and Under.
You can also register for the walk as a Virtual Walker if you are unable to actually attend the Walk itself on Sept 8th.  A Virtual Walker would work to raise funds for Curesearch just like other Walkers.  

To Register as a Walker or Virtual Walker for Team Brodinator online, go to 

http://www.curesearchwalk.org/toledo/Brodinator

Raise $100.00+ to receive the official Curesearch Walk T-shirt

To Donate Online:

Go to http://www.curesearchwalk.org/toledo/Brodinator

-You will see our team members listed next to Brody's picture, Choose and click on a Team Member to donate to or Make a General Team Donation

To Donate Via Phone:

Call 301-589-0971

To Donate Via Mail or Fax:

Use this Link to print a Donation Form

https://dl.dropbox.com/u/37215226/Curesearch%20Donation%20Form.pdf

To Walk with Us and/or Join TEAM BRODINATOR to raise funds for Curesearch:

Go to http://www.curesearchwalk.org/toledo/Brodinator

-Click on blue link "Join our Team" located right under "Welcome to the Team Page of Team Brodinator."

Flyer You Are Welcome to Print and Distribute: 

Here is a link to a flyer you are welcome to print and distribute to friends and family with info on how they can join us in supporting Curesearch, the Children's Oncology Group, and children with cancer. 

https://dl.dropbox.com/u/37215226/Curesearch%20Walk%20Team%20Brodinator%20Flyer.pdf

Information About Children's Oncology Group:

 The Children's Oncology Group (COG) is the world's largest organization devoted exclusively to childhood and adolescent cancer research. The COG unites more than 8,000 experts in childhood cancer at more than 200 leading children's hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe in the fight against childhood cancer.

Today, more than 90% of 13,500 children and adolescents diagnosed with cancer each year in the United States are cared for at Children's Oncology Group member institutions. COG's unparalleled collaborative efforts provide the information and support needed to answer important clinical questions in the fight against cancer.

The Children's Oncology Group has nearly 100 active clinical trials open at any given time. These trials include front-line treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these diseases, and trials involving new and emerging treatments, supportive care, and survivorship.

The Children's Oncology Group research has turned children's cancer from a virtually incurable disease 50 years ago to one with a combined 5-year survival rate of 80% today.  Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer.

Good week

Brody has continued to feel ok. He is still very finicky about food but has been eating relatively well for what he does agree to eat.

He got his labs and IV chemo on friday and his labs came back pretty good. He only got 1 drug on friday and it was a push (injected into his port at one time) rather then infused over time. He then had to get IV fluids for a little while after. The result was him only having to be at the hospital about 2 1/2 hours total rather then the 4+ hours the previous week (and what he has to do this coming Friday).

Other then that, very uneventful week (other then some thunderstorms on saturday night)-- boys have been playing alot and we Grandma and Grandpa and Trish's Grandma visit on Saturday and then Uncle Dan (Trish's brother) on Sunday.

Once again we will be homeschooling the boys. This is necessary in our case not only for Brody but because we don't want Geordi and Jaden bringing home every bug from school and getting Brody sick.. While Brody's immune system should not be as depressed under this chemo, it can still be dangerous for him to get the flu or whatnot and if he does get a fever he needs to be admitted to the hospital (we try to stay away from hospitals when we can avoid it).  We are looking at starting up our home schooling soon-- yes cutting summer short. Our plan is to hit it hard Mondays thru Thursdays and then take Fridays thru Sundays off (other then reading) since Brody will be doing Chemo on Fridays if he stays on schedule.

 Homeschooling the boys is alot of work (takes time) but is fun also and you get to spend extra time with the boys. We did this the year before last (when Brody was treated the first time). Geordi did 2nd Grade at home and Jaden did Kindergarten.... both boys were ahead in most subjects when they went back to public school last year. Geordi was a bit behind in writing- as Whitehouse Primary school taught cursive writing in 2nd grade and we didn't do this.... but both boys were well ahead in math and reading.

Not much else to report-- no news is generally good news for us.

More later...

More Twister

Twister Fun

Having Fun Playing Twister

Feeling mostly ok

Brody has had a good couple of days-- he had some "gut" pain on friday night but it didn't last too long. He is tolerating the new chemo ok. He got IV chemo on friday outpatient (at hospital about 4 1/2 hours)-- but didn't experience any nausea (this chemo is hit or miss in causing nausea)-- he either didn't have any or it was controlled by the zofran (anti nausea medicine he got).

He also gets chemo orally at home each day-- he only has to drink 2 ml (less then 1/2 a teaspoon) which helps. The first night was rough in that he is scared of any new medicine... it took about an hour of coaxing to get him to finally take it. He didn't like the taste of it but he finally took it. It has become easier each night since then.

He has been eating relatively well-- being very finicky though... He has been on a French toast kick recently-- this at least has alot of calories and protein (eggs). 

One benefit of this new chemo is that it isn't as "toxic" as his earlier chemos. His counts don't drop off like the more toxic ones so as long as this holds the tumor at bay and hopefully starts to shrink it, he should feel better on this chemo then any of the previous ones so far. This chemo works differently then previous ones also-- I don't fully understand it so will let Trish explain it at some point rather then put out incorrect info.

Since it is less toxic, Brody doesn't have to go back to hospital for labs as often-- his next appointment is Friday for IV chemo and labs.

Our biggest physical concern for him right now is an obstructed bowel. He "went" ok over the weekend but has been going less the last day or so-- he gets miralax to soften his stool and we have increased the amount we give him the last few days.

Still been kind of hot so we have been staying in alot. Brody still has his nephrostomy tubes and if he sweats his dressings may come loose-- this is a relatively big ordeal to replace and Brody doesn't like it at all.

We have continued on focusing on Brody having fun-- which means him getting his way most of the time.  I did get out our go-cart (we hadn't used it in so long Brody didn't remember us having it even though it takes up a fair amount of room in our garage)... and got it working-- had to rotate the tires as the drive wheel had very little tread left. I also had to adjust the throttle to get the clutch to work right (engine wasn't turning fast enough to fully engage the clutch)-- working fine now... We rode it around our (bumpy) yard (pics/vids coming soon) for about an hour or so last night when the sun got behind some trees. Brody liked it alot but I think he would like it better if yard was smoother... it goes pretty fast and dad drives a little crazy.

I think thats it for now...

More later..

Pic of Leia, Our Missing Dog... Please Come Back to Us Leia!