Brody had a good day today.

Brody felt much better today compared to yesterday.  He had a lot of energy today and not much pain.   His breathing was better too.   He had a great time bowling today with his brothers and friends.  

Video of Brody Bowling

https://www.youtube.com/watch?v=9JbpPdSHpm0&feature=youtube_gdata_player

Change of Plans.... Brody started new chemo regimen today

We arrived at the hospital this morning expecting Brody to receive his usual chemo.   Instead our oncologist surprised us with news of a more encouraging option for right now.   Brody has been taking a chemo regimen that consists of Vinorelabine,  Cyclophosphamide,  and Bevacizumab.    There is a clinical trial that has been running for the last year and half that compares the outcomes of these three agents in kids with rhabdomyosarcoma against Vinorelabine,  cyclophosphamide,  and temsirolimus.   The regimens are pretty much the same except for the difference of Bevacizumab or Temsirolimus.   Our oncologist discovered last night that preliminary results of this trial were just recently released.   It turns out the regimen that contains the temsirolimus was quite significantly more effective against rhabdomyosarcoma.   So today Brody was switched to the regimen containing the temsirolimus instead.   He will be on this regimen instead for the next month and then will get another CT scan to determine if it's working or not.  

In the meantime we are moving forward with steps to enter the trial in Grand Rapids in case this switch is still not effective.  

Brody did well with the new medication today.  He did not have any major problems.   His only complaint is feeling excessively tired.   He could barely keep his eyes open as they were starting it.   This is likely mostly due to the IV benadryl that is given with it to help prevent severe allergic reaction to the temsirolimus.  

Brody has been getting tired for easy these last couple of weeks though and has been having leg pains and belly pains.   These all come and go and the severity varies.   He also gets short of breath very easily.   These are new developments these last few weeks.   They were all signs to us that Brody's tumor may have been gaining ground.   On top of that,  a few weeks ago,  our oncologist felt an area in his abdomen he suspected to be new tumor growth.   He couldn't say for sure until doing the CT scan.   He didn't want to do the CT scan right away at that time though.  He had us wait until the end of Brody's chemo cycle so that a better comparison  between CT scans could be made.   So,  yesterday when we got our very disappointing news,  we were not entirely surprised.   Today,  though I was surprised at how little it took for Brody to become tired and short of breath.  Walking extremely short distances requires Brody to stop and rest to catch his breath.   Walking from a special parking lot for Heme/Onc patients at the hospital to the Heme/Onc office is not a very long walk.   But today,  Brody had to stop,  rest and catch his breath three time to make it there.   I,  of course,  let him walk as slow as he needed to the whole way.   There were not any wheelchairs available at this entrance today and he said his belly and legs hurt when we try to carry him.   It's so scary how fast things can change.  

We have a stroller for Brody but it's not holding up too well.   Brody's weight is a little too much for it.   We decided to go ahead with getting him a pediatric wheelchair instead.   We will be checking them out tomorrow.   Hopefully this regimen he started today is more effective and starts decreasing the size of the tumor(s) quickly.   Hopefully soon,  we won't need the wheelchair and Brody will be back to feeling more like himself.  

Brody has  a surgery and chemo scheduled next week.   He will have surgery next week to replace the stent in his right ureter.   After surgery he will be sent to Heme/Onc for chemo.   He will be released that same day from the hospital/he should not need to stay overnight.   Hopefully,  all goes smooth with this next week.   There is some concern that the tumor may now be in the way too much to be able to successfully replace the stent.   Brody's urologist reviewed the latest CT scan though and still thinks she will be able to do it. 

Thanks everyone for all your prayers and  support.  Please continue to pray for us.  

Bad News Today on CT Scan

We unfortunately have very bad news to share today.  Brody had his CT scan today and the news was not good.  The tumor has gotten significantly larger.  He doesn't really have just one tumor and tumors are not really 2-dimensional so it's hard to explain exactly the change in size.  To give an idea though, an area that has been growing was measuring, in a 2-d way, 4.3cm by 4cm is now measuring 5.62 by 4.21cm.   His last CT scan was 3 months ago. 

The plan for now is to continue with the same chemo regimen for the next few weeks (until just after Christmas).  Then, we will start treatment/clinical trial at DeVoss Children's Hospital in Grand Rapids, Michigan.  This is the trial we considered participating in back in late August/Early September when we feared Brody's tumor was getting larger again.  (We had thought Brody's tumor was growing at that time due to sudden worsening of Brody's kidney function after removing the stent in his right ureter.  The stent had been placed originally just before surgery to debulk his tumor.  It was placed only to help protect the ureter during the surgery and not because he was needing it for his kidney function.  So when he suddenly had kidney problems a few weeks after the removal of the stent, we feared that the tumor had grown large enough to block flow through the ureter again.  It turned out back then that this was not the case and instead it was scar tissue in the area from the stent placement that caused the problems.  Brody ended up getting another stent placed in the right ureter and had been doing well... actually, he feels well now still.  Most the time he feels pretty good.  Thank goodness!). 

Anyhow, the name of the trial is "Molecular-Guided Therapy for Relapsed and Refractory Childhood Cancer."  Here is a link to a news story about the trial. 

http://www.mlive.com/news/grand-rapids/index.ssf/2013/04/first_national_clinical_trial_1.html

Our oncologist spoke with team at Helen DeVoss Children's Hospital today.  After speaking with them, our oncologist felt it best to have Brody continue with current regimen for next few weeks.  He said that he was told that once we start with Helen DeVoss Children's Hospital that they will need to re-assess Brody and re-stage him etc etc etc.  This will take a few weeks.  Then the lab that does the testing and analysis on Brody's tumor samples will be closed for the weeks around Christmas and New Year's.  So due to the holidays etc we would end up with Brody being off chemo for significant amount of time getting switched to new regimen.  To minimize the time that Brody would be off chemo entirely, it's best to wait until after Christmas to get started with things in Grand Rapids, Michigan.  Although Brody's tumor is getting bigger on his current regimen, it does at least slow the tumor down.  So, we don't want to be off it longer than necessary before switching to another option. 

We are, of course, very upset about today's news.  There are no words to describe the awfulness of the news today.  I am trying very hard to just concentrate on the things that are going right and trying to stay positive.  You never know, maybe Brody just might come out of this next trial cured of cancer.  Maybe the tumor getting bigger is a blessing in disguise.  If it hadn't, we wouldn't be taking steps to enter this other trial. 

 

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.