We had a fun time going Trick or Treat

Geordi is the Stay Puft Marshmallow Man,  Jaden is the Minecaft Enderman,  and Brody is the Minecraft Creeper.   The boys went Trick or Treat near our house with their friends Lucy,  Evan,  Kyle,  and Levi.   Lucy is the Bumble Bee.  Evan didn't make the pic but was Spiderman.  Kyle was a Green Ninja and Levi was Iron Man.  

Watch "Trick or Treating with Friends 2013" on YouTube

https://www.youtube.com/watch?v=BIlDM8zydEw&feature=youtube_gdata_player

Brody is Home!

Brody is doing better today and just got home from the hospital a little bit ago.  Yay!!!

His counts started improving this morning too and so he was able to get his chemo today.  Fortunately this means he is just one day behind on his chemo schedule.   I was quite relieved that he got chemo today.

Brody admitted to hospital today for high fevers

Brody woke up this morning complaining of really bad belly pains.   Then a little while later he said he was really cold.   I checked his temperature.   It was 101.3.   Then checked it several more times and kept getting 101.3 or 101.4.   I called his oncologist to let him know.   He told us to go ahead and bring him in to be admitted.   Not too long after this,  I checked his temperature again.   It was 102.8.   I gave him some ibuprofen and he soon started to feel much better.  

By the time we got to the hospital,  he only had a mild fever but was too weak to walk.   I had to get him a wheelchair to get him to Peds  Oncology at the hospital. He was started on fluids and IV antibiotics as soon as we got to peds oncology.   Since then he has been feeling much better and is walking better.   His belly still hurts when walking or trying to change positions in the bed.   But it certainly has improved.   This evening his fever has started to go back up again (when the ibuprofen started wearing off).   He just got some more Tylenol a little bit ago and is feeling okay.   He is enjoying watching ParaNorman with his brothers right now.  

We are not sure what is causing all the pain nor the fevers.   We are suspecting a urinary tract infection and severe constipation.   We have been pushing a lot of grape juice and Miralax for Brody today.   It seems to be helping.   The pain is not as bad since he has had a few bowel movements.   We normally need to give Brody Miralax everyday.   We are giving a lot more than usual today though.  We have to keep his stools very loose all the time so it doesn't get blocked by his tumor.  His tumor doesn't leave much space for the stool to get through.   Everyday,  it's always a guess for us as to how much Miralax we need to give him.   It's one of many frustrating daily problems in the Pizzifred household. 

Brody had blood and urine cultures taken when we arrived at the hospital.   So far no positive cultures on these.   His doctor has started IV antibiotics directed toward urinary tract infection.   Brody still has a stent in his urterer.   This puts him at higher risk for a urinary tract infection.   Brody will stay admitted until he has 48 hours with no positive cultures and at least 24 hours without fever.   These are the typical rules in this situation anyway.  

Let's all hope and pray Brody is feeling better soon and back home again soon too.

Brody in Niagra Falls Canada on the White Water Walk Adventure

Boys at Table Rock in Niagra Falls, Canada

The boys and I took a short fun trip to Kalahari (an indoor waterpark)  in Sandusky,  Ohio and then to Niagra Falls,  Canada with my Mom and Dad.  
We went to Kalahari last Thursday.   It was an awesome day to go.   The park was absolutely not crowded since it was a school day.   We just walkee right onto every ride there.   The wave pool was especially nice in a non-crowded environment.   Brody was a very happy,  giggling boy in the wave pool.   The water coaster and wave pool were his favorites.  Geordi and Jaden were in love with the Flowrider.   It's a ride that let's you learn to surf or boogie board indoors.   They rode this over and over and over again.   Brody gave it a few trys too.  

My Dad brought his camper to Niagra Falls.   We were so busy with the activities in Niagra Falls that we didn't do much of the usual camping activities.   But despite the extra gas to pull a camper,  we saved a lot of money bringing the camper.  The campsites were not nearly as much as a hotel stay for 6 people.   Plus we were able to eat most of our meals in the camper both while traveling to and from the campground and while staying there.  The food costs savings alone more than made up for the extra gas costs.   The boys all enjoyed the Falls and the tourist activities on "Clifton Hill" close to the Falls.   Unfortunately Brody felt pretty nauseated and his belly ached a lot on Saturday.   This was the day we did the Maid of the Mist (boat ride that takes you up close to the Falls).   So,  he was not in the best mood for this adventure.   We also did the Journey Behind the Falls and Niagra's Fury adventures after the Maid of the Mist.   He felt a lot better during these but was still a little nauseated.   By late afternoon and evening on Saturday he was doing much better and had fun goofing around with his brothers.   On Sunday,  he seemed to be feeling pretty good except for his usual off and on nausea.   We did the White Water Walk this day and then several activities on Clifton Hill.   The boys all greatly enjoyed each of them.  

Brody says he had a lot of fun on the trip despite some bouts of belly pain and nausea.   I am glad that we got the opportunity to take this trip.   Brody had really been looking forward to it when we had to suddenly cancel back in August due to kidney troubles etc.

Thank You to Everyone Who Supported Team Brodinator and CureSearch

Thanks so much to everyone that supported Team Brodinator and CureSearch for children's cancer research.  We participated in the Toledo CureSearch Walk on Sept 7th.  The event raised over $40,000.00 for children's cancer research.  Brody was the top fundraiser for the walk.  He was excited to get a 1st place reward and he had a great time with his friends and family that were able to attend.  Thank you!

Great CT Scan Results Today!!!!

I am very excited to share the wonderful news we got today!   Brody's CT Scan shows that Brody's tumor has gotten a little smaller.    There even appears to be some areas that looked active on the last scan that look to be necrotic tissue this time. 

We have been so worried that his tumor has been getting bigger because of the sudden changes in Brody's kidney function.  We were worried it was the tumor getting larger that was causing the sudden problems.  Today's scan shows that there is no new growth of his tumor around his right and only kidney.  The tumor is all to the left side.  The area that looked a little larger around his bowel on the last scan done without contrast looked the same size today and appeared to not be "actively growing."    Overall there appeared to be less area of the tumor that looked to be "active tumor" compared to previous scans since his big surgery in March. 

It is suspected that Brody's recent problems with his kidney function are instead related to damage to his ureter either during the placement of previous stent or during the removal of the stent.  His kidney function has been much better since placing a new internal stent in his ureter.  It is expected that Brody will continue to need this internal stent.  It will need replaced about every 3 months. 

We have shared with some friends and family that we have been looking into and taking steps to get Brody enrolled in a trial in Grand Rapids, Michigan due to our fears that his current chemo regimen was no longer keeping the tumor from getting larger.  We likely will not yet be starting this trial after today's CT scan results.  We will continue with his current regimen as long as things are improved or stable.  We do plan to meet with the team in Grand Rapids, Michigan and have sent all of his records there.  We are getting all of our "ducks in row" to be ready to move quickly to this trial if the current regimen should stop working.  (Our oncologist says it's a matter of "when" it will stop working, not "if".  He expects eventually the tumor will progress despite the success we have had so far with it).  It will be nice to meet with the team in Grand Rapids, Michigan too for a second opinion, in general. 

Brody having fun making funny faces on a pic of Jaden while waiting for his surgery.

Brody is excited to be getting his nephrostomy tube out today.   Surgery isn't fun but this one is a good news surgery. 

Nephrostomy tube (hopefully) getting removed today

As mentioned previously, Brody had an internal stent put in a few weeks ago (right before his infection showed itself)-- this is sort of a tube with one end in his kidney and the other in his bladder. This is used to keep the urine flowing to his bladder and would be necessary to get his external nephrostomy tube removed.

His Nephrostomy tube was capped last Wednesday and they have been closely monitoring his labs (specifically his Creatinine and Potasium). Both were actually significantly higher the day the tube was capped then they were the previous time they were checked. But since then, they have both come down to his "normal" range. He also had an ultrasound done on his kidney on friday and it looked good (no hydronephrosis).

He is scheduled for surgery to remove the external nephrostomy tube in a couple of hours.

Brody has been eating and drinking well the last few days-- we actually were concerned about his drinking as his taste change over time and things he liked previously he doesn't like anymore--- he was pretty much down to chocolate milk (a specific brand) and water. Trish made a party punch before that the kids liked so she made a batch of it and Brody has been going to town on it... it contains pineapple juice, orange juice, sprite, and cranberry juice. Brody made up the last batch of it and this is mainly what he has been using to stay well hydrated-- this is especially important when you take chemo drugs and some other drugs as they can be hard on the kidneys if you don't flush them out.

We have all been real busy with the boys starting back to school last Thursday. Trish and I are volunteering in Brody's class to help the teacher and students in his class but to also be there if Brody needs any help with anything and also for germ/sanitizing control- Brody's teacher and the rest of the school staff has been amazing with Brody and with our situation. So far Brody has only made it to the first day of school (between labs, ultrasounds, chemo, and now surgery)-- but we are hoping things settle down soon. While Trish and I are confident in our ability to home school Brody if the need arises we want him to experience school for the social and other aspects of school which we can't really provide.

Geordi has come down with a nasty cough/chest congestion-- a friend of ours (who's son is one of Geordi's best friends) has let him stay at their house while he fights this-- his cough is mainly bad at night-- hopefully he is better soon.

Thats really it with us--

More later...