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.