Very Merry Christmas

We had a wonderful and very Merry Christmas this year.   The boys were all very surprised by their Christmas presents and had fun playing with all their new toys all day.   We just enjoyed the day at home playing all together all day.   It was just a relaxed and wonderful day together.  

Brody felt great on Christmas.  He was not plagued with any aches,  pains,  nausea or vomiting and was full of energy.   We are so thankful for this.  

We are at the hospital now getting chemo and then will soon be headed toward Cincinnati area for some more Christmas fun and visiting family and friends.   We are greatly looking forward to seeing my Uncle Rob in from London,  England.   Needless to say,  we don't get to see him very often.  

Thanks everyone for your continued prayers and support.  And,  we hope all have and are enjoying the happiest of holidays. 

Santa brought the boys an Air Hockey Table

Brody with his new frogs he got for Christmas

Jaden with his New Electric Guitar

Serious Monopoly Game

New Chemo Regimen Appears to Be Working..... Yeah!!!

Brody's oncologist was palpitating Brody's belly this morning checking the size of the tumor(s) and he says it may be getting smaller!!  YEAH!!  We will have to wait for scans to be sure but for now, the new chemo regimen appears to be working!   This is the best Christmas present ever!  Praise the Lord!  

Brody is starting week 3 of the new regimen today.   He will be starting week 1 of the next cycle of this regimen next week,  the day after Christmas.   His oncologist plans to give at least 6 weeks total of this regimen before performing a CT scan to check progress.  

Brody has also been feeling better the last few days.   He hasn't been having leg cramps,  shortness of breath,  and much fewer belly pains episodes.   He certainly seems to be getting better rather than worse this week.  

Brody had surgery on Wednesday to replace the stent in his ureter.   The procedure went well.   No complications.   It hurt extremely bad for him to go pee the first couple times after but after that was not so bad.   He says his "pee-pee is fully healed now."

Brody had a cast put on his left foot this week.   He has been having more trouble with his foot drop in his left foot.   He has lost a lot of flexibility in his left foot.  The cast will help stretch everything to regain some flexibility.   He will wear the cast for next 2 weeks and then will get a new one put on that will stretch things further.   Once full range is back he may get an AFO.   He has had one before and hated it so I am not so sure we will do that or not.  

We are all very much looking forward to a wonderful Christmas together.  We will be staying home this year which is great place to be Christmas morning.   We would like to wish everyone a Merry Christmas and thank everyone for all your prayers and support!

Opening Christmas Presents

Cousins

The First Snowball of the Season

Brody Sledding with His Papaw

Brody Had Fun Playing and Sledding with His Cousins

Brody, Jaden, Geordi, and myself took a trip to my Mom and Dad's for the weekend (Bill had to work).  We had planned to participate in the annual Lebanon Christmas Horse & Carriage Parade.  My parents have miniature horses that are trained to pull little carts.  The carts, horses, and those riding in the parade get all decked out in Christmas decor and lights for the parade.  It's a beautiful parade every year.  This year though there was quite a lot of snow and ice the night before the parade.  We were nervous the horses may get injured trying to pull the cart in the slippery conditions.  Also, the kids were so excited about the snow, it was clear they would rather play in the snow than be in a parade.  So, we opted for playing in the snow instead.  My sister, her husband, and my 3 nieces had come to town for the horse parade too.  We were very happy to get to see them all.  My sister and I, unfortunately, live about 9 to 10 hours away from one another.  Our two families don't get to see each other very often for this reason.  So, we were glad to finally spend some time together and excited that we had a lot of fun snow to play in too.  I just wish the visit could have been longer (and that my poor little niece, Ella, had avoided injury while sledding....She managed get a very bad ankle sprain).   The kids all had a great time playing in the snow and just playing together, in general.  My cousin Shawnda and her 3 kids were able to join us for some sled riding at the park too.  It was nice to see them again too. 

 We also had a little early Christmas celebration with my Mom, Dad, brother, grandma and my sister's family.   We all exchanged Christmas presents this weekend since we won't see each other again until some time after Christmas.  Hopefully, it will be too long until our next family get together.  This one was fun but way too short. 

Brody felt good for most of the weekend.  He did have a few brief instances of significant belly pains, nausea, headache, and leg cramps.  Fortunately, none of the episodes lasted for very long.  His cousins and brothers were also very good about being gentle with him and being very quiet in the morning so he could sleep and get some extra needed rest.  They also helped pull Brody back up the sledding hill in his sled several times too.   Brody did manage to walk all the way up the sledding hill once by himself though. 

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.

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...

Join Us at the CureSearch Walk on Sept 7th

Join TEAM BRODINATOR in the CURESEARCH WALK in Toledo, Ohio on Sept 7^th, 2013

 

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. Can't make it to the walk on Sept 7^th?  No problem, you can still join Team Brodinator as a Virtual Walker and work with the rest of Team Brodinator raising funds for CureSearch to support Children's Cancer Research.  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!

 

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 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.  Very few children with recurrent rhabdomyosarcoma survive another year from a diagnosis of recurrent rhabdomyosarcoma. Brody has endured ongoing chemo and multiple surgeries since the recurrence.  He is battling for his life and we are so proud of how well he has handled this tremendous battle.  He lives life in the moment and doesn't dwell on all the terrible things he has had to endure.  He appreciates and enjoys each good day.  CureSearch for Children's Cancer supports children's cancer research.  Brody is one of many children battling one of many types of childhood cancer in great need of more research.  Many promising research investigations and promising clinical trials to treat children's cancer are put on hold each year due to lack of funding.  TEAM BRODINATOR will be participating in the Toledo CureSeach Walk on Sept 7th and raising funds to help one day cure childhood cancer.  We welcome you to join our team and/or make a donation to CureSearch. 

 

The Toledo Curesearch Walk will be held Sept 7^th, 2013.

 

Centennial Terrace

5773 Centennial Road

Sylvania, OH 43560

 

Registration/Check-in

9am-10am Sept 7^th, 2013

 

Opening Ceremony and Walk

10am  Sept 7^th, 2013

 

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

 

To Donate Online:

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

-You will see our team members listed, 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.dropboxusercontent.com/u/37215226/Team%20Brodinator%20Donation%20Form.pdf

 

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

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

-Click on the green link "Join Team" located to the right of Brody's picture.  You can also call or text Tricia (Brody's Mom) on her cell phone at 419-304-6784 or email Tricia at teambrodinator@gmail.com and she will assist you with registering for the walk and joining Team Brodinator.  Please call, text, or email Tricia to let her know you are joining Team Brodinator and provide her with your contact info so she can keep you informed of coordinated efforts of Team Brodinator. 

 

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 and children with cancer.  The second page is a Team Brodinator t-shirt order form.  T-shirt orders need to be in no later than August 28^th. 

https://dl.dropboxusercontent.com/u/37215226/Curesearch%20Walk%20Team%20Brodinator%20Flyer%202013%20with%20t-shirt%20order%20form%20on%202nd%20page.pdf

 

 

 

To Order a TEAM BRODINATOR T-Shirt:

Please send the following info to Tricia Pizzifred (Brody's Mom) no later than August 28^th, 2013.

1. Name
2. Address
3. Phone
4. E-mail
5. Number of T-shirts and sizes needed (available as youth small (6-8), youth med (8-10), youth large (10-12), Adult small, Adult med, Adult Large, Adult XL, Adult XXL, Adult 3XL)
6. Indicate if you would like to pick-up your t-shirt(s) at Cherry Tree Bakery in Whitehouse, OH or if you would like to pick it up at the Toledo CureSearch Walk on Sept 7^th, or indicate other preference.  (We can ship your order.  The shipping costs would be added to your order costs.)
7. Indicate your preferred payment method.  Tricia can e-mail you an invoice so 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. 

 

T-shirt Costs: $12.00 per t-shirt if not shipping, $12.00 plus shipping costs if required to ship.  You do not need to pay for your t-shirt prior to ordering.  We can collect payment later.  

Tricia's Contact info: Phone or text 419-304-6784, E-mail: teambrodinator@gmail.com, Fax 888-363-3695

Here is a link to a picture of Brody wearing his Team Brodinator t-shirt at last year's walk.  It is also a printable T-Shirt order form if you would like to print and collect orders from friends and family, please feel free to use it.  The t-shirts this year will be very similar to the one in the picture. But, the design on the front of the t-shirt will be changed to make the Gold Childhood Cancer Awareness Ribbon more prominent.  We want to help make Gold the New Pink!  The back of the t-shirt will have TEAM BRODINATOR in white lettering. 

https://dl.dropboxusercontent.com/u/37215226/Team%20Brodinator%20T-shirt%20Order%20Form.pdf

Thank you!

Brody's Home!

Brody finally got to come home from the hospital today!   It was a beautiful day too (sunny and 70 degrees).   Brody played some basketball,  ran around in the yard with giant nets catching his brothers and Lucy with them,  played with the dogs,  played on the swingset in our backyard,  and rode on our go-cart.   We made a fire in the fire pit tonight too and roasted marshmallows and hot dogs.   We are all very glad to be at home sweet home.   And,  even happier to see Brody feeling good and acting like himself again.  

Playing Cars Monopoly and Eating Strawberries

Brody is continuing to feel better and better.   His kidney function is back to normal too!   We are in the hospital still for one more day of fluids and antibiotics.   Tomorrow Brody will finally get his long overdue chemo.   He has been off of it for almost 4 weeks due to all the recent issues with blood counts and kidney problems.   After chemo tomorrow,  Brody will go home with oral antibiotics for awhile.   Next week if all is going well,  we'll start the process toward determining if Brody will be able to have his external nephrostomy tube removed and just have the internal stent.   It's a big relief to see Brody feeling so much better and to hear his kidney function labs are back to normal too.  

Brody Continuing to Get Better

Brody has been continuing to get better.   His urine is getting more and more clear.   His kidney function labs are improving.  He is feeling much better and more energetic.   He is eating some today too (had some strawberries,  yogurt smoothie,  pineapple,  chocolate chip cookie,  milk,cheez its,  and cheetos). 

We were told this morning that it's an Enterobacter infection we are dealing with.   One of Brody's antibiotics was stopped since getting this info.   He is staying on the other one (Zosyn).   It seems to be working well.   Brody has not had fevers today.  

Brody Seems to be Feeling Better Today Compared to Yesterday

Brody has been feeling better today than he did yesterday.   He has not had any very high fevers since early this morning.   His urine looked like pure blood (more than I have ever seen following surgery for stent or nephrostomy tubes) yesterday and this morning.   This evening his urine is starting to look much more clear (not thick and bloody).  

Brody is still very weak and tired though.   He needs help sitting up and getting in and out of bed.   He keeps saying,  "why does my body feel so weird. "  He was having some headaches tonight and nausea.   He really hasn't eaten much of anything today.   Hopefully he continues to get better and his appetite and strength will return soon.  

The infectious disease doc stopped by earlier today and let us know that each of the urine cultures that have been collected have been reported back as gram negative rods.   The blood cultures are clear.   It appears he is definitely dealing with a gram negative infection and it was not just a contaminate of the urine collected from the tube.   The nurse told me this morning that the urine culture from his nephrostomy tube was positive for E.  Coli.   The infectious disease doctor said they are not sure yet if it's E. Coli.   So far they just know it's a gram negative rod and they "presume it's E.  Coli. " 

Brody will get repeat labs and cultures tomorrow.   Here's to hoping for negative cultures and improved kidney function.  

Brody's nephrostomy tube culture growing E. Coli

Brody had very high fevers most the night.   He felt okay despite this.   He was just mostly tired.   He has been sleeping,  sleeping,  and sleeping.   This morning his fever is much lower (low grade fever).   He is still sleeping right now.   His kidney function labs have shown that his kidney function has gotten significatly worse since yesterday.   And,  we just found out this morning that his nephrostomy tube cultures are growing E.  Coli.   Infectious disease doc has been consulted to determine most appropriate antibiotics to treat E.  Coli in a kidney with acute renal failure.   I was just told they have decided to go with Zosyn and Linezolid.  

It's most likely that Brody's kidney was introduced to the E.  Coli infection during last weeks surgery.   When Brody came in yesterday morning to have the surgery,  he was not acting like himself.   He did not yet have a fever but he was unusually tired (excessively tired and weak acting).  His white counts were high too.  (The elevated white counts is what prompted the oncologist to collect samples for culture after Brody's surgery yesterday).   His surgery yesterday was to place an internal stent from his kidney to his bladder.   He already had an external nephrostomy tube (a tube that runs from his kidney,  through his back and empties into a bag).   Brody has had both of these before.   He prefers the internal version rather than external.   The external one was placed last week on Thursday.  The eventual hope was to be able to remove the external tube and Brody would only have the internal one.   Right now he has both.  Anyhow,  based on how Brody was feeling before surgery,  his white counts being elevated before the surgery and then immediately after surgery feeling bad and that his nephrostomy tube culture is growing E. Coli,  it's most likely that he developed the infection last week during the surgery to place the nephrostomy tube.   Bill and I have not yet had to do any dressing changes nor flushes of the tube since it was placed.   The potential opportunity that we could have introduced this infection does not exist.   It most likely occured during the surgery last week.   However,  I am wondering if the E.  Coli might be a contaminate.   It's possible the culture could have been contaminated.   The opening for the drain of the nephrostomy tube could have been contaminated with E. Coli and then the urine flowed through this into the collection cup.   You cannot completely disinfect the drain opening/closure without dipping it in a cup of disinfectant.    The nurse who collected the sample to be used for culture did not do this.   She cleaned it with betadine using a swab all around the outside where hands  etc would have to touch the opening/closure valve.   There are parts where you have to open the tube to drain it  that cannot be cleaned with a swab.   The sample from the tube was taken right after his surgery yesterday.  The nephrostomy tube he had last week was removed during yesterday's procedure and a new external one was placed as they were placing the internal one.   So since this one was so new when the sample was drawn there was not much opportunity for E. Coli to have contaminated the part of the tube opening that cannot be disinfected with just a swab.  If E.  Coli is the culprit agent and Brody's kidney is infected with it,  this infection was most likely introduced during his surgery last week.  

Please pray,  cross fingers,  make a wish etc for Brody to have complete recovery from all of this.  

Brody Back in Hospital Due to High Fevers

Well,  we are back at the hospital.   Brody has been running a fever over 103 since about 8pm until just a little while ago.   He is now running around 102.5.   He just started IV antibiotics and IV tylenol a couple hours ago.   The hospital is doing blood and urine cultures.   Hopefully these antibiotics do the trick soon. 

Brody's Surgery Went Okay

Brody had surgery today to place internal stent from kidney to bladder.   Surgery went ok.   Brody is not in a lot of pain from it.   I think his eyes got dry during the procedure though.   He is complaining that his eyes burn.  

Just as we were leaving the hospital our oncologist had the nurse draw blood cultures and urine cultures.   Brody's white counts were high in labs they drew this morning before surgery so they decided to draw cultures.   Then not long after that Brody felt warm (feverish).   The nurse checked his temperature again and it was 100.7 degrees.   So I am worried now he has an infection.   We were told to go ahead and take Brody home and keep an eye on his temperature.   If it goes over 38.5 degrees celcius (101.3 F) we will need to bring him back to the hospital.   Brody was wrapped up nice and tight in a very warm blanket not too long before he had his temperature taken at 100.7 degrees.   Let's hope it was just the warm blanket.  

Brody Scheduled for Surgery on Friday

Brody went to hospital on Monday to get labs done and we were hoping he would be able to start back on chemo on Monday too.   Unfortunately,  his kidney function is still not good enough to start chemo again.   Today now makes 3 weeks since Brody has had any chemo.  

Since Brody has not been able to do chemo and he has to be off chemo for awhile to be able to do surgery,  our oncologist decided to go ahead and get Brody scheduled this week for surgery to place an internal stent from his kidney to his bladder.   (Same as he had before).   He (and we) are hoping the internal one will be enough to keep Brody's kidney functioning well and that Brody will be able to get rid of the external nephrostomy tube.   Once the internal stent is placed,  the external tube would be clamped and Brody will be monitored to assure internal tube is handling the job okay.   If this goes well,  then Brody would be scheduled for another surgery to have the external tube removed.   We are hoping this works out.   Brody would much prefer the internal one rather than external so he can swim and take a shower and not have other kids etc wondering what is wrong with him when they see that external one.   Also,  the infection risk with the external one is much greater.   It's a BIG worry for us.   Hopefully the tumor is not so big that the internal one won't work.  

Since Brody's kidney function has been so bad recently,  he has not been able to have a CT with IV contrast.   He had one without contrast but this does not give as good of a picture to determine change in tumor size.   Once Brody's kidney is strong enough he will get another CT with IV contrast so it can be determined if the tumor is indeed growing or not.   The worry of course is that it has changed significantly considering this sudden problem with Brody's kidney/urine flow being obstructed.   It's hard to determine at this point if the tumor is significantly bigger or not and if his chemo regimen is still working.   To complicate it further,  he has been off chemo for 3 weeks now and will be off of it until at least Monday (may get one of his chemo meds on Monday but not the others that are harder on the kidney).   Once he finally gets his CT scan the tumor may appear significantly bigger simply because he has been unable to take his chemo for so long rather than it not working anymore.   Hopefully we get the scan and the tumor hasn't got significantly bigger despite all this.   I am,  of course,  very worried that may not be the news we get.

I have been very busy researching and trying to understand all the available trials out there for rhabdomyosarcoma.   I want to be able to be as informed as possible as to any possible options should we get bad news.   Figure we gotta be ready to make a decision quickly and go with it.   It's really a hard decision.   Basically the only thing left is Phase 1 trials (and looking into research that is looking promising to soon start human trial phase 1... some of the more promising research being done hasn't even made it to Phase 1 yet).   Generally speaking these are designed to test safety and are appropriate dose finding trials.   Generally there is not much information on how effective or ineffective the agent being tested will be.   To make a decision you really need to understand the pathophysiology of rhabdomyosarcoma and have a very good understanding of genetics, immunolgy,  and biochemistry.   Much of the pathophysiology of rhabdomyosarcoma is still poorly understood and unknown.   It's been quite some time since my Genetics and Biochemistry classes.    I was reading a clinical research paper yesterday regarding potential promising discoveries with gene silencing and differentiation therapy that could be a potential cure for rhabdomyosarcoma.   This article was only 4 pages long but it took me a good 6 hours yesterday to read it and actually understand it.   I had to bust out some old textbooks and Google became my best friend as I was trying to decipher the language of this article.   After reading and studying this trial for awhile it appears it's directed more towards aveolar rhabdomyosarcoma rather than embyronal rhabdomyosarcoma that Brody has.   There is still potential that the same gene silencing could cause cell differentiation for embryonal rhabdomyosarcoma too (meaning make cancer cells decide to not be cancer cells anymore... make them form skeletal muscle tissue and stay that way rather than constantly dividing and forming larger and larger tumor and spreading).   The research article did not mention trying to silence this gene (TANC1) in embryonal rhabdomyosarcoma cell types.   The author did say it was a "provacative question" as to whether they would see the same response with embryonal rhabdomyosarcoma.   The author of this study has stated in interviews that he is optimistic that he will be able to go to human trials with this promising new approach to treat rhabdomyosarcoma.   I emailed him today to ask if he will be soon starting a human trial,  gave him a brief Brody patient history and asked if it would be appropriate for us to consider this treatment option for Brody.   It's in Dallas,  Tx.   I haven't got a reply on my email yet.  (Our oncologist here in Toledo suggested we contact him too after he read his clinical research article).

Here is a link where you can read an interview with this researcher describing his promising research.   Unlike his clinical research articles,  the interview uses language we can all understand.   Check it out!  Exciting stuff!   (Bill stumbled upon this article and brought it to my attention... Exciting stuff he found). 

http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=31510

At Home

Brody's labs came back great.

His Serum Creatinine was  0.79 (has to be below 1 for Chemo) so we are somewhat relieved that it went below that as it is indicative that his kidney is not damaged (or at least not severely damaged).

I wrote previously that his Magnesium was high-- it is actually on the low side-- (low magnesium can cause an arrhythmia) the doctor was ok with letting Brody come home as his pain was well managed and his labs were "almost" good. They left his port accessed as they want him to come back in tomorrow for labs-- they could have de-accessed his port but Brody chose to keep it in for another day. His Potassium is now at the low end of normal

Brody got his NG tube out-- he actually was a little afraid of letting the nurse pull it out so he did it himself (with nurse watching)-- did a great job.

The doctor sent us home with a magnesium oxide prescription to try and bump up his magnesium levels-- the suspension can be gritty and not taste good so she wrote it in pill form for Brody to try-- Brody has NEVER taken pills.... this afternoon we practiced a little bit with some orange tic-tacs cut in half and he figured it out after a few tries. We then went to the Movies and saw Smurfs 2 as promised... we got back about a 1/2 hour ago and Brody took his pill (cut in quarters- he needed to take a 1/2 pill (200 mg))-- without issues... yeah... Brody was somewhat excited about his as he really hates taking his Bactrim (Pink Medicine) and he can get this in pill form too.

As mentioned above-- we took the boys (and Lucy from next door) to see Smurfs 2... the boys all enjoyed it and Brody did too-- has been a long wait for him.

Overall a pretty good day....

Obviously more later.

Bill

Feeling better this morning

I made him get out of bed...  I'm a firm believer that laying around too much can make you sick. He is eating well (that was his second bowl) .  Had renal ultrasound earlier and it showed no more hydronephrosis...  Labs just got taken.  Waiting on results.

Uneventful night

Uneventful night-- Brody went to bed at 11:30 last night (he kept wanting to watch some toons but I cut him off-- he was obviously very cranky and tired (just like his Dad) but did not want to go down (unlike his dad)-- He ate pretty good last night-- a few bowls of cereal, spaghettio-s with meatballs (he usually just eats the meatballs), strawberries. He is still sleeping and looks to be pretty soundly.

Trish took Geordi and Jaden home last night and I (Bill) stayed the night with him and got about 7 hours down-- I feel somewhat human again.

Brody has continued to have pain from the surgery-- it is not very invasive but can still hurt. The pain seems to be well managed. We have a love/hate relationship with nephrostomy tubes-- they alow his kidney to drain easily and keep it healthy-- without a healthy kidney-- he can't continue chemotherapy. But the bad side is he has a hole in his back-- no swimming, showers, etc.. and Brody loves the water-- and it posses and infection risk. We aren't looking too far out at this point-- we are hoping if he needs a way to keep the kidney healthy we can hopefully internalize this later (get another stent put in).
 

 His Serum Creatinine has continued to drop. The 11 pm one was 1.21, the 5 am one was 1.09-- as Trish mentioned previously, it needs to be below 1.0 for him to get Chemo. Pottasium levels are not an issue anymore (he is toward the lower end of normal now). Everything else is looking pretty good. Brody's doctor said previously she wants him to be montiored til Saturday at a minimum as the medicine for lowering potassium can through the other electrolytes out of whack... his phosphorus and magnesium are still kind of high but are trending toward the norm.

Are goal today is to get the kid out of bed-- he got out a few times but just for a few minutes-- want him sitting on a chair or a couch not laying in bed all day and hopefully get out of here tomorrow...

Thats about it for now.

Bill

Brody's First Labs Following Surgery Already Showing Improvement in Kidney Function - Yay!!

Brody's serum creatnine is down to 1.50 (we need to be under 1.0 for chemo).   We are headed in the right direction.   His potassium is now normal and he was just told he is allowed regular diet.   He was happy to hear that.   He was not liking low potassium,  low protein and low sodium.  

Brody's surgery went well and he is feeling ok

Brody's surgery went well this afternoon and fortunately he is not experiencing a lot of pain either (pain is being controlled with codeine through his NG tube... he's glad he doesn't have to taste it).

Brody will be getting labs done every 6 hours for now to check kidney function,  potassium levels,  phosphorus etc.   Hopefully we start seeing improvement in kidney function soon now that he has his nephrostomy tube again.  

Few more details

Just go add,  Brody's CT today was done with out IV contrast... The contrast is hard on kidneys and they obviously didn't want to put any stress on it.  He did take an oral contrast and this helps them differentiate between bowel and tumor.  My point being with all this is the picture they got today may be difficult to compare with earlier ones and but the doctor said that it looked "pretty much the same as his one 2 months ago"

I (Bill)  slept for about 3 hours while Trish stayed in PICU with Brody and now Trish is trying to get some sleep. Brody looks to be sleeping well.  He ate some captain crunch and strawberries before bed and watched (his favorite movie) "the Smurfs" and "A Christmas Story" on his tablet last night.

Brody's biggest disappointment is that he couldn't see Smurfs 2 that was released yesterday...  We were going to see it today but Brody was pressing me to see it yesterday...  I told him we will go as soon as they release him from the hospital as long as he is up to it.

Brody is tolerating all this pretty well.  Kid is beyond tough in my book...  He didn't like getting the NG tube placed..  But was more scared of it being done then actually having it done.  He told me last night before i went to bed that it's not bugging him much anymore and hopefully it will be out later today.

According to one of the nurses i spoke to last night, the medicine Brody got to lower his Potassium apparently gets it out of his system through the diarhea he experienced last night...  It has subsided for the most part....

That's pretty much it for now

Brody in the ICU Tonight

Well,  it's been awhile since our last post.   The no news is good news was holding true.   We have bee enjoying a wonderful,  fun-filled summer and Brody has been feeling great.  

This morning though Brody came into the hospital for his usual weekly chemo and was feeling great just like usual.    He always has labs done first before chemo to check if his body is ready or not first.   Today's results were a great big,  "Not Ready. "  Brody has been off his cyclophosphamide (chemo) he normally takes at home each day for a week.   His white counts were too low last week so the cyclophosphamide was held this past week in hopes that today he would be ready for his other chemo he receives each week at the hospital.   Well,  his white counts are back up but now his kidney is in trouble (Brody only has one kidney... his left was removed during surgery in March while also removing much of his abdominal tumor).   Brody's serum creatnine was 2.68 this morning (this is very high and huge increase in a week... he was at 0.57 last week).   His potassium was also too high (was 5.7 this morning and then 6.4 this afternoon).   This is scary high and too much potassium can cause your heart to stop.   Brody was moved to the ICU after the lab of 6.4 came back.   He was given oral medication at first to try to bring the potassium level down.  Brody was having a hard time drinking all of this medication though and ended having to get an NG tube today to get the medication in him.   He's had horrendous diarrhea since starting this medication.   This evening he was started on IV sodium bicarb,  insulin and glucose to try to further bring down his potassium level.   Fortunately this seems to be working.   His potassium level is finally coming back down (I was just told it's now 4.8 which is normal).  

Brody had an ultrasound and a CT scan today after his bad morning labs.   The ultrasound showed he has more fluid around the kidney than previously.   The CT scan showed there is an area it appears that his tumor may be growing again (around his colon).   This growth appears to be just enough that Brody's urterer is again occluded by his tumor (causing the fluid accumulation,  high potassium,  high serum creatnine,  and kidney damage).  

Brody is being monitored in the ICU tonight and receiving more meds to keep his potassium levels in check.   In the morning he will have surgery to place an external nephrostomy tube again.   We are not sure how long Brody will have this tube.   Brody is of course upset about this since it means he can't swim and play in the water anymore nor take a regular bath or shower again.   He has greatly enjoyed being able to do these things this summer. We had a rafting trip planned for next week in West Virginia then in Tennessee on Cherokee Lake to go tubing and fishing.   He was really looking forward to this trip and is quite disappointed we can't do it now.  

It's possible Brody might get to convert to internal stent instead later on.   First we have to do the external one and wait to see if the kidney heals up enough that he can tolerate chemo again.   Then he will get back on chemo again and hopefully the tumor stops growing.   He will have to get another CT scan to see if the tumor has regressed or at least not gotten even bigger and then the conversation could start as to whether there is possibility of internal stent working. 

His doctor is not yet thinking his chemo has stopped working.   The tumor did not get much bigger and he has been off chemo from low counts recently.   Also sometimes we get a CT scan and the tumor gets a little bigger then the next time a little smaller and then a little bigger.   His tumor has responded this way several times over the past year.   So anyhow I am trying to remain optimistic this is the case this time too.  But I most admit any increase in size of tumor freaks me out!   Scary!!!   And,  unfortunately this small change in size has made a big impact on the health of Brody's kidney and decreasing his quality of life.   I am greatly relieved his potassium levels have come down this evening and I am really hoping his kidney heals/recovers soon after getting his much needed external nephrostomy tube tomorrow.  

Please keep Brody in your prayers.  

Inside Racoon Mountain Cave

Bumper Boats in Cave City, KY

Posing for a Pic After Finishing a Mammoth Cave Tour

Gem Mining in the Rain at Racoon Mountain, TN

Enjoying Some Silly Time With Cousins and Brothers in the Neverending Rain July 4th Weekend in Chattanooga, TN

Sleeping in the Recovery Room After Surgery to Remove Internal Urterer Stent... Giraffe Went With, Of Course

Already Soaking Wet and Muddy, Might As Well Just Hike in this Mountain Stream

Getting Ready for Bumper Cart Ride in Cave City, KY

Can't Believe Mom is Still Letting Me Walk in this Stream

Brody with his Brothers and Friend Levi Inside Mammoth Cave

Good CT results

Brody had a CT done yesterday which was his first since about 3 weeks after his surgery. I for one was worried going into this one-- Brody has been feeling pretty good lately and that is normally when you get the rug pulled out from under you.

To review a bit-- Brody had surgery in March to "debulk" his tumor-- the hope being that the chemo would work better on a smaller tumor and also so the tumor wouldn't be pressing so much on his other organs and causing issues (like obstructing urine flow from his kidney to his bladder, obstructing his bowels, etc)-- the Surgeon removed about 95% of the tumor-- the remaining parts were too "involved" meaning the posed more risk to remove then benefit from removing-- the surgeon didn't want to "hurt" Brody. We were optimistic about how his chemo has been working since most of the tumor removed was dead tissue-- part of this could have been from the chemo but also from when Brody was first diagnosed as having relapsed the tumor was growing rapidly and when this happens it can grow so fast as to cut off it's own blood supply.

Anyway-- since after his surgery, the tumor involvement remaining is all "live" tumor-- I for one was worried about the tumor regrouping-- apparently the chemo is still working to keep the tumor in check. Brody's oncologist said that the tumor looks to be "about the same and maybe a little smaller"-- since what is remaining is so oddly shaped, I imagine it is hard to tell if it is smaller or not-- but in 2 1/2 months it has not grown which is good news to us.

Yesterday (Friday) was Brody's normally off week (no chemo-- just labs)-- His ANC (Absolute Neutrophil Count) was pretty low (which is weird because his has been real good under this chemo)... it was low enough that Brody's oncologist wants him to stop his oral chemo (what he takes at home each day) til next week. The reason being if his ANC is not high enough by next Friday, his next round of IV chemo could be delayed.

Anyway-- that is pretty much all that is going on with us. The boys have 2 more days of school (Mon & Tue next week).... we will be doing a very light summer school with the boys-- we will be doing some reading and math 2 or 3 times per week-- We always want the boys to read (not a problem with Geordi who reads alot), but for math we need to cover some of the more obscure standards that we didn't cover in our home school curriculum.

Thats pretty much it for us....

More late....

Bill

Everything Going Well

Sorry for the lack of updates- as we have noted previously, no news is generally good news.

We have all been pretty busy for the last month. Brody has been feeling well about 99% of the time. He will occasionally have belly or back pain but seems to be fully recovered from his surgery. He still has an internal stint between his right kidney and his bladder. He has not had a CT since the middle of March and the plan is to have another CT in a few weeks to see where we are at and if the tumor looks like it has been kept in check then the stint will be removed-- the stint still bugs him at times (occasional pain) but not too often.... the purpose of this is if the tumor starts to grow again that it will maintain a channel for his urine to drain to his bladder so he doesn't have to get a nephrostemy tube again.... Nephrostomy tubes are NOT fun.

We managed to work in a trip to Disney World and Lego Land a few weeks ago-- we left after Brody's week 3 Chemo (week 4 is a lab week)-- and Brody's Oncologist was ok with us skipping labs on his off week as he hasn't really had any issues. We had a Childrens hospital line up down there to take him to if he had any issues. The boys had a blast however the weather didn't co-operate too well had a fair amount of rain on our park days. Brody's favorite ride was and still is Splash Mountain-- We literally went on this ride over 20 times although he did try and like Space Mountain as well... we did each of the parks and Brody was tall enough to ride every ride except the Aerosmith Rollercoaster at "Hollywood" studios. Brody's Oncologist wrote us a letter that allowed us to get a guest assistance pass for all the parks which allowed Brody to utilize the fast pass lines for nearly every ride-- this is good since Brody can get tired pretty easily-- however for the most part, the lines were not too bad anyway-- most of the popular rides had about 20 minute lines or less. We went to Lego Land one day too but this was somewhat of a disappointment after going to the Disney Parks. We stayed at a very nice Marriot Resort that had really good prices (perhaps it was a slow time). We had nice weather on our last 2 "beach days".  We drove down there and back over 2 days each direction-- both ways we stopped near Chattanooga Tennessee to see Trish's sister Julie and her family.

While on the trip we talked to the Jaden and Brody and they both decided they want to go back to public school for the rest of the school year (we only have 3 weeks left). Trish got the ball rolling and they boys both started back up this past Wednesday-- we were able to work out a few things with Brody's Principal & Teacher to keep him hydrated and avoid germs (ie hand sanitizer on Brody's desk, allow Brody to have a drink at his desk, etc)-- we also wanted to have Brody evaluated and get and IEP (individual education plan) since he is a little bit behind in some of his skills.... His reading has come along way the last few months but we think he might be somewhat behind in other subjects and want to work with him over the summer.

We are considering enrolling the boys in the fall but we are obviously concerned about being able to keep the boys healthy and Brody on his chemo regimen (if he gets too sick he has stop chemo). His labs/counts have been very good the last few months-- we will see how things go.

I think thats about it- obviously more later.

Brody Driving Tractor at Papaw's House

Another silly face

Silly faces while getting Chemo.. Feeling good most of the time.... All 3 boys advanced in Cubscouts on Tuesday.. Geordi got his Weblos badge, Jaden got his wolf Badge, & Brody got his Tiger badge. Not alot else going on.

Pics of Brody Enjoying Some of His Favorite Activities in Pigeon Forge, TN

We Had a Fun Spring Break Trip to Pigeon Forge, TN

We took a trip to Pigeon Forge, TN for Spring Break.  We had a great time.  The boys enjoyed the hotel indoor swimming pool, waterslide, and hot tub.  They had a blast riding go-karts, trampoline bungee-jumping, watching Comedy Barn show and Smoking Mountain Opry Show, riding down the Alpine slide, finding their way through a mirror maze, feeding birds at Parrot Mountain, and playing in arcades. 

Brody had a few episodes of headaches, belly pains, chest pains, and back pain during the trip.  But he managed to feel good for most of the trip.  He was high-energy and ready to have fun, fun, fun most of the time.  But he does tire quickly and cannot keep up his fun-loving energy for as long as he would like.  He gets drained pretty quickly sometimes.  Once the tiredness sets in, it's there.   It's hard to see him wanting so badly to be able to keep up with his brothers but he just can't.  He gets so mad too at times that he gets so tired.  And, of course, the periodic episodes of sudden pains are not nice either. Fortunately, though, he has continued to feel well most of the time.  And, although he certainly needs a lot of rest, when he's up and moving for the day, he's at it full-speed ahead. 

Easter 2013

Check out the boys hunting their Easter Eggs on YouTube!

http://www.youtube.com/watch?v=-TAKfDFWdIo


The boys had a great time hunting Easter eggs this year.  Unfortunately Bill had to be at work bright and early and could not watch it in person.  I video-taped it for him though. Click on link above and you can watch it too.

Brody had a head start looking for the eggs.  He had woke up in the middle of the night and remembered that the Easter bunny had probably come while he was asleep.  He was then too excited to go back to sleep.  After a few hours of him begging to head downstairs, I finally gave in and let him go check it all out before his brothers woke up. 

Enjoying the park and then a chocolate ice cream cone today.

Resuming Bevacizumab today

Brody is scheduled to resume his bevacizumab today. This is one of 3 chemo drugs he has been on since last July-- this one works by preventing new blood vessel formation. He has been off this for 9 weeks now (accepted practice is to be off this for 4 weeks prior to and 4 weeks after surgery)-- we were extremely nervous about discontinuing this prior to surgery because his tumor was already so big. We have been less nervous since, but have been anxious to get it resumed.

Brody has been feeling pretty well lately-- we continue to struggle to get him to eat though. He has always been finicky but he doesn't seem to have much interest in  some of what we've come to call his "go to" foods lately and he hasn't had much of an appetite when he does eat and as a result-- his weight has been about steady since after his surgery (about 5 pounds less then before his surgery).

His "go to" foods are cereal (Cocoa pebbles & Cinnamon Toast crunch mostly), Spaghetti-os with meatballs, pizza, Pizza rolls-- and he hasn't had much interest in these lately and when you ask him what he wants when he is hunggy he says "I don't know" and when we suggests food too him he will sometimes get mad at us for suggesting food he doesn't like.

The good news is that he has been feeling pretty good-- his incision is healing pretty well-- he is running around like his old self but he does tire easily it seems. He gets in our hot tub almost daily-- he really loves the water and missed it alot when he couldn't go in because of his nephrostomy tube that he had since May of last year-- We will definitely need to get the pool up (we bought a cheap above ground pool a few years ago after he as first diagnosed) when it warms up some more.

We took a few weeks off from home school for Brody's surgery but resumed for Geordi and Jaden on the 11th... we let Brody off an extra week until he was feeling better. Brody's reading has really improved the last few months and he continues to surprise us in how well he can read.

We re-enrolled Geordi in public school this past week (start of the 4th term)-- his first day back ended up being a snow day (no school)-- we didn't have a huge storm but the roads were relatively bad and I am assuming with our mild winter, they had snow days to burn. Geordi has really missed seeing his friends and is happy to be back. Jaden hasn't shown any interest in returning to public school and in our opinion he is excelling at home school so we are content in home schooling Brody and Jaden the rest of the year.

That about it for us...

Thanks to everyone for keeping us in your thoughts and prayers....