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.