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.