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....

Finally got to go swimming

Brody Eating Lunch After His CT scan Today

We have had a very hard time getting Brody to eat these last couple weeks but his appetite has picked up a lot in the last couple days.   He is almost back to eating his normal amounts again.   Thank goodness!   He had been turning into a walking skeleton this last week.   He lost 4lbs this week which is quite a bit for such a little guy.  

Brody Continuing to Feel Better Each Day

Brody has been continuing to feel a little better each day.   He is able to walk a lot faster now and can almost run.   His belly is still sore to touch and it hurts when he moves from sitting to standing or from lying to sitting.   Going up and down stairs still hurts too.   But like I said,  he is walking and almost running and can sit or lie down without pain.   And,  the pain is less and less each day.   Brody is also adjusting well to having the internal stent in his urterer.   He is not having very much pain with it anymore.   It usually doesn't cause him pain unless he has to urinate into a cup for a urine specimen or at the end of his urine stream for a couple seconds.   This internal stent can stay in for up to 6 months so the plan now since Brody is tolerating it well,  is to leave it in for a while until we know if his chemo will work better now that the tumor is smaller.   We would hate to remove it only to have to repeat surgery to place it again if the tumor starts to grow rapidly again.   Obviously,  we hope this does not happen but know it certainly could.  

Brody had a CT scan today and is starting back on chemo again today.   The CT scan was done so that we have a baseline for after surgery to compare future CT scans to.   I just looked at Brody's last CT scan compared to today's scan and OH MY GOODNESS,  WOW!!!!   It's an extreme difference between the two scans.    I have no idea how Brody was not in a lot more pain and discomfort before the surgery.   Everything in his abdomen down to his groin was all squished and wrapped with tumor.   A picture is worth a thousand words.   I am really glad I did not see this scan before his surgery because I would have been even more worried than I already was.   Dr.  Stockman (our surgeon) is beyond awesome!   Wow!! Wow!!  Wow!!   The part of the tumor that remains is adhered to the ileac artery,  the aortic bifurcation,  and parts of his bowel.   This section was not removed because the surgeon felt the risk of serious complications were to great to remove this part of the tumor.   There is no way to remove all of a tumor like this even if he had tried to go for this section.   The tumor was adhered to just about everywhere/every vital structure in Brody's abdomen.   To be able to remove all of the tumor you need to take a margin of healthy tissue everywhere that the tumor had adhered to.  You cannot take a margin out of bladder or his bowel or his major blood vessels etc etc.   So there was no way to remove all of it.   The surgeon was able to remove about 95% of the tumor mass.   Several different chemo options work far better on tumors that are smaller.   The larger the tumor,  the harder it is to get many chemo drugs into the tumor.    We are hoping that we can finally get ahead of the cancer now that the tumor is much smaller.  The tumor is still a significant size.   It's flat like a pancake now and stretching across significant territory.   It's not a regular shape at all to tell you dimensions.   This flatter tumor still covers much of his abdomen centered around the aortic bifurcation but more so to the left ileac artery area than to the right.   But both are involved.  

Brody has started back on the same chemo regimen he was taking before surgery minus the one drug that blocks angiogenesis (formation of new blood vessels).  This is the bevacizumab.   He will start back on the bevacizumab in 2 weeks.   Today he has started back on vinorelabine and cyclophosphamide.   Brody has tolerated this chemo regimen extremely well for many months now and so far it has been the most effective.   Let's hope,  pray,  cross fingers,  make wishes and anything else you can think of that it will work well enough to prevent further tumor growth/spread of the cancer now that the mass is much smaller.  

Brody will have another CT scan in 6 weeks to check how the chemo is working.   It will be compared to the new baseline scan done today.   Now that Brody's tumor is much smaller and flat,  I can no longer feel it when palpitating Brody's belly.   His oncologist cannot feel it anymore either.   This is a good thing except that now I can't just feel his belly to tell if the tumor is growing or not growing.  So I am sure I will be even more anxious than usual in the days leading up to each CT scan.  

We are looking forward to enjoying some family outings we were unable to do prior to Brody's surgery.   I see a waterpark trip and trips to the swimming pool and playing in the hot tub in our near future.   We have to wait for clearance from the surgeon first,  of course,  though.   Our follow-up appointment with the surgeon is this next week (March 20th).   Brody also wants to take a trip to Florida and play on the beach and go to Disney World and ride Splash Mountain and Thunder Mountain again.   I am not sure if we can swing the Florida trip yet or not but we will see what we can do.   It's complicated both financially and coordinating Brody's treatments/chemo.  

Thanks to everyone for all your prayers and support through all of this.   It does help to know there are so many people out there praying for us.  

Where we go from here

We have obviously been focused on Brody's surgery and his surgical recovery the last few weeks and even Trish and I haven't really looked too far out regarding Brody's treatment.

First of all-- Brody's surgeon did an outstanding job-- he was careful not to get our hopes up too much going in as he really had no idea what he was getting into until he opened Brody up-- we are extremely thankful that he did such a good job on Brody's tumor-- we were concerned with him having alot of blood loss as the main source of Brody's tumor was his illiac vein which was pretty low down in his abdomen with a big tumor blocking access. The fact that Brody only lost 4 units (pints) of blood was amazing. Another bit of good news is that approximately 75% of Brody's tumor was dead (most of the lower part of it)-- this was somewhat expected as this is how it appeared on Brody's PET CT he had a few weeks ago.

We spoke with Brody's oncologist today before Brody was discharged today and got an idea of how we are proceding going forward.

Brody is taking another week off of chemo and the plan is to resume his chemo next friday (March 15th)-- this will be our Day 1 of his 28 day cycle-- he will get Vinrelobine and resume his oral Cyclophosmide. 2 weeks after this (day 15) Brody will get his Bevacizumab-- as mentioned previously, this Chemo works by blocking new blood vessel formation-- we had to suspend this for at least 4 weeks prior to his surgery and another 4 weeks after as Brody needs to make new blood vessels in order to heal. We are hopeful that the remains of the tumor will not grow significantly between now and then and that the chemo regimen that Brody is on continues to work.

We will likely be getting a CT done in the next week or so to get Brody a new "baseline"-- (something to compare future CTs to).

Our immediate concern is to get Brody eating and drinking more this weekend. He has not eaten or drank much today and we hope he gets back on that right away.

Tomorrow Brody gets to take his first real shower since last May (when he got his Nephrostomy tubes placed)-- Hoping he enjoys it.

Brody still has an internal stint going from his right kidney to his bladder-- it hasn't bothered him too much so far but it did bother him for a few minutes today (causes him some pain).... this will be in for several more weeks as he heals up.

Thats about it for now-- once again--- thanks to everyone for all the support we have gotten as we have dealt with all of this....

Bill

Brody's Home!

Brody got to come home from the hospital this evening.   He is enjoying eating some popcorn and watching "The Lorax" with his brothers.  

Negative on. C. DIFF infection

Good news on that...  Off of IV fluids now.  Assuming he eats and drinks enough today he should be released.  Been hanging with his brothers, playing Ps3 games and walking around...  He walked about 100 yards to playroom,  played for about 10 mins and walked all the way back with out sitting or taking break.... He is eating and drinking,  just not a lot.

Donut diet

Brody is now allowed solid foods...  No significant gas pains since yesterday... Lots of diarrhea now though...  Butt is getting pretty raw causing some pain now...  If he can start taking in enough liquids and some food he may be able to come home tomorrow...

He hasn't eaten or drank much... just a little bit of fruit punch (Capri Sun) to drink... a few bites of a bacon and egg hot pocket-- and about half of the donut shown above.

 We are a little bit afraid with all the antibiotics he has been on that he may have another C. Diff infection in his bowels (causing all the diarrhea).... this infection is caused when antibiotics kill off alot of bacteria in your bowels (other then the C. Diff one) and the C. Diff bacteria overgrows your bowels causing severe diarrhea. Brody had this a few months ago and this increases his susceptiblity to this infection.

Trish is with him again tonight, Geordi and Jaden came home today from Trish's parents house-- Thanks to Uncle Dan for bringing them back up today.

Thats about it... going to bed soon so we can get back there early tomorrow -- I'm assuming Trish will not get much sleep tonight if Brody can't go more then an hour without going potty.

More later...

Brody Finally Getting Some Sleep Uninterrupted by PAIN

Brody had a horrendous night last night.   Awful gas pain!  He was beyond miserable.   Feels so good just to watch him sleeping without waking every few minutes in pain.   Let's hope the gas pain stuff is over with.  Not fun!

Gas pains

Brody felt pretty good yesterday and got up out of bed several times and took a few very short walks. He is moving alot better. He can walk with just a minimum of support.

He had 3 popsicles and some punch (capri sun) yesterday and tolerated them ok. He also was up continuously from about 2 pm til after I left at about 9 pm... he watched several movies--- Dispicable Me, Madagascar 3, Paranorman-- for some reason our netflix is not working on our PS3 or Brody's tablet (it is working on our laptop here)...

Trish went home and slept several hours yesterday during the day and I went home last night to sleep.

He had a bowel movement last night about 9 pm (which is a significant step in his recovery) followed by a few more later.

He had some gas pains yesterday but they passed relatively quickly. Last night from about 10 til 3:30 he had ALOT of gas pains... this got him worked up enough that he did vomit- not fun with an incision in your belly,

Trish said he settled down somewhat about 3:30 but kept getting occasional severe but somewhat short duration pains the rest of the night

I got here a little after 8 am this morning and he had a few pains but has mostly settled down. Trish went home for some much needed sleep.

Thats about it for now... more later.

Bill

Liquid diet now

One of surgical residents just came by and examined him and said he was ok for limited liquid diet now- Brody got the popsicle he has been asking for since Saturday...  He ate about 1/2 a popsicle.

He had some gas pains last night and was complaining about being cold but his back was sweaty. Trish stayed overnight and slept when she could.  I went home last night to sleep and got a solid 9 hours (8 pm til 5am)...  I feel human now.

Surgical wants him up out of bed as much as possible to help get his bowels moving again which should help with his gaa pains.

Bill

Brody Got NG Tube and Foley Catheter Removed Today

Brody has gotten rid of 2 more tubes that were annoying him today.  He had is Foley cathter removed this morning and his NG tube this evening.    He still has lots of tubes and wires attached but these 2 were bothering him the most.  Brody is hoping to get to drink and eat soon.  It looks promising that he may be able to start trying liquids tomorrow.  He is a very hungry boy but the surgery group is afraid it is too soon yet to introduce any liquids or food.  But tomorrow is a possibility. 

 

Brody has not had any fevers yesterday or so far today.  He is still taking multiple IV antibiotics and getting regular blood cultures.   So far none of the blood cultures done have been growing anything since the one collected on March 1st at 4am. 

 

Brody has gotten up and into a chair twice today (and twice yesterday).   He will get up into a chair at least one more time today.  It seems to be getting a little less painful for him each time. 

 

Brody has needed oxygen off and on last night and today but his need for it is definetly decreasing and so is his pain level. 

 

Brody has been very tired but he remains in good spirits and is progressing through everything very well.

 

 

 

ARGH!

Just got the news that Brody's blood cultures from March 1st at 4am are growing something now too.   We don't know what yet.   Not even if it is a gram negative or positive.   The report is just "variable."  

Fortunately though (again knock on wood),  Brody has not had fevers today.   Hopefully,  the major source of this "variable" infection came out when his left kidney was removed on March 1st.

Brody Opening a Birthday Present Today

Blood Culture Results Back

We got blood culture news today.   The bacteria that is growing from Brody's blood cultures from Feb 28th is Burkholderia gladioli.   It is found in soil and water normally.   It can cause serious life-threatening pneomonia in kids with cystic fibrosis.   We suspect that Brody's left kidney became infected with it through his nephrostomy tube and then entered his blood stream through his left kidney.   On Tuesday February 26th around 8pm,  Brody was playing in our playroom and Geordi suddenly noticed that Brody's nephrostomy bag was not connected to Brody.   It turned out that his nephrostomy tube had fractured/had just broke clean through.   So the tube that goes straight through his back and into his left kidney was open to air and rubbing against Brody's shirt and whatever else he was bumping into at that time.   It definitely became an unsterile tube going right into his left kidney.   We cleaned the tube as best we could once we had discovered what had happened and took Brody to the hospital that night.   The nurse that evening also tried her best to remedy the situation and prevent even more contamination but certainly contamination had already occurred.   Brody had surgery on Wednesday to remove the contaminated tube/replace with new tube and place the internal "stent" on the right side.   On Wednesday night Brody started with the very high fevers,  tachycardia,  and his white counts plummeted.   The big surgery to remove his tumor had to be postponed due to this.   He was started on multiple IV antibiotics at the start of the first fever.   He was afebrile and all vitals were stable on Friday morning and so his big surgery began.   During the surgery most of his tumor and his left kidney were removed.   It is likely that the major source of Brody's infection was in the left kidney that was removed.   He has still been experiencing fevers,  low blood pressure,  decreased urine output,  and tachycardia periodically after his surgery.   These are all signs of sepsis.   Fortunately, (knock on wood) he has not had any episodes like this today so far.   Also,  his blood cultures have all been negative since Feb 29th.   Brody's IV antibiotics were changed today after learning what the culprit bacteria is in his blood stream.   Susceptibility results are not back yet though.   It generally takes about 5 days for these to come back which will give better information about what the best antibiotics would be to treat the infection.   We may here these results sometime tomorrow.   The antibiotics he has had so far seem to be working though and it is likely that much of the infection was in that left kidney that was removed.   So hopefully he will kick this infection soon (and not start up with any new ones).  

Brody is continuing to progress well and he is handling everything he has been through beyond exceptionally well.   Brody had to get out of bed and walk to a chair and sit up in the chair for a while for the first time since his big surgery.   This was extremely painful but Brody was very strong and got through it.   He knew he just had to do it.   He has just got back out of the chair and back into the bed so he can take a nap.   He said the pain was much less on this second time getting up.  

Today is Brody's 7th birthday.   We celebrated his birthday early before coming into the hospital.   He had a party at a bowling alley.   He had 28 friends come bowl,  eat pizza,  and cake and open presents with him.   He loved his birthday party and I am so glad we celebrated early because he certainly is not up for much celebrating today.   The Childlife Program here at the hospital decorated his room for his birthday and brought him several presents to open.   He really wanted to open them when they first arrived and he did open a couple.   But he was just too tired to open anymore and not really in the mood to get too excited about anything today.   He is still pretty out of it with the morphine that is controlling his pain.   We decided we will wait until he is feeling better to open the rest of those presents.  

Brody's next big thing he wants is to get his NG tube out.   He is really not fond of this large tube coming out of his nose.   The surgeon says it has to stay in for at least another 1 to 2 days.   They are using it to suction fluids etc out of Brody's stomach.   His bowels are not moving enough for that to come out yet.   If they pull it too early and all those gastric juices accumulate,  it could make Brody throw-up which would be an extremely painful situation right now.   Brody is very hungry and thirsty as he has not eaten or drank anything since Thursday evening.   He can't eat or drink until this tube comes out.   An orange popsicle is tops on his list when it does come out.   He was allowed to suck on a cherry sucker today and they have been allowing us to swab his mouth with water.  

Brody is being tried on room air again right now.   Let's hope he does ok with this.   He finds the oxygen tubes in his nose to be pretty annoying.  

Anyhow,  overall Brody is doing well.   We expected it to be a rough road.   It was a TREMENDOUS surgery.   Brody is getting through it all one step at a time and one day at a time.  

Out of PICU...

And out of bed...  Watching The Smurfs and irritated with the photographer.

Back on oxygen

Brody was having problems maintaining his blood oxygen levels so they put him back on oxygen (not a whole lot) . He also had his fever spike about 6 pm and this was raising his heart rate. so he got another dose of Tylenol. His fever is gone now and his heart rate is back to normal..  Everything else looks good. His incision is pretty painful when he coughs...  The nurses want him to try to cough occasionally to open up and clear his lungs.

Still hoping he gets out of the PICU today, ..  It's not very restful for him with all the other patients machines beeping every few minutes.

Like last night,  I went to sleep about 8 pm last night and Trish stayed up with him til about 3 am. I'm with him now and Trish is sleeping now.

Another bit of good news is they lifted the visitor restrictions due to the Flu risk at the hospital on Friday (no one under 18 was allowed to visit) so Geordi and Jaden were allowed to visit with Brody...  Brody got a kick out of telling his brothers about his funny morphine dreams he's been having. We were getting by with video chats via the boy's tablets before this... They have pretty good wifi at the hospital.

Brody is still sleeping alot of the time, just wakes often.

That's really all to report...  Thanks for everyone's prayers,  thoughts,  and all the other support we've gotten from friends and family.

Bill

Brody is off oxygen now/breathing room air

After Brody came off vent,  they had him on oxygen.   He is doing fine without that now too.   Also no more fevers so far today. 

Off ventilator now..

Still doing real good

Quick Update

Brody is continuing to do well after his surgery.   He is in process of being weaned off thr vent.   His pain is well-controlled and vitals are stable.   He has been complaining that he is thirsty.   So all things considered,  I would say we're doing good.  

Our Sweet, Brave, Tough Brody

Brody After Surgery This Evening

Brody is out of surgery and doing ok

Brody is out of surgery and is doing ok.   The surgeon was able to remove about 95% of his tumor.   There was a section of the tumor around his bowel with too much vascular involvement to attempt to remove this part of the tumor.   Brody's left kidney was also removed.   His right kidney is functioning very well though.   The surgeon also had to sacrifice the ileac vein.   He said Brody may experience swelling in his left leg from this.   The ileac vein is responsible for blood return out of the left leg.   He said Brody has already developed "collaterals. "  Brody's tumor was already blocking flow through the ileac vein previously and so Brody's body compensated by growing new blood vessels to bypass this blockage.   With sacrificing the ileac vein,  Brody will probably grow even more of these collaterals to help with this situation.   Brody lost 4 units of blood during the surgery today and they replaced 3 units.  Bill,  myself,  our friend Barbie,  and our friend Mark all donated blood for a direct donation to Brody.   Those donations went to use today.   Thank you so much Barbie and Mark!   Brody is still on a vent today and we are hopeful he will be able to come off it tomorrow.  

As many of you know already,  Brody was suffering from a high fever,  tachycardia,  and low white count yesterday and his surgery was delayed to today.   His vitals did stabilize and fevers subsided so he was able to have surgery,  obviously.   But,  Brody is still battling an infection in his blood.   His blood cultures were positive for gram negative rods early this morning.   I am not sure what type of blood infection exactly it is yet.   He is receiving 2 different iv antibiotics to treat the infection.  

Brody has a very large incision which runs vertically up the center of his entire abdomen.   He was experiencing pain in his abdomen when he was first waking up but he has let us know it is no longer hurting (pain is well-controlled).  

We talked to Brody quite a bit in the weeks leading up to surgery to let him know generally what to expect after the surgery.   He was aware that it was likely he would be on a vent after surgery and that he would not be able to talk with all of these tubes in his mouth.   We practiced communicating without being able to talk these last couple of weeks.   Brody has been putting these skills to use tonight and has been remaining calm about the situation.  He knows that either Mommy or Daddy will be at his bedside at all times and that if something is wrong,  he wiggles his fingers.   We grab his hand when he does that.   He squeezes our hand to confirm to us that something is wrong.   Then we ask him questions that he can answer with a yes or no for us to figure out what is wrong.   He nods his head appropriately for yes or no.   I am beyond AMAZED at how well he is handling all of this tonight.   He is one strong,  brave,  inspirational,  and very much loved little boy.

Let's pray for a restful and uneventful night for Brody.  

Second Brody Surgery Update

"The surgeon is still working and Brody is still doing very well. "

First Surgery Update

Brody is doing well so far with surgery per his surgeon.  

Brody's surgery is a Go Today

Brody did not have anymore fevers overnight and no fever this morning.   All vitals are stable this morning.   Brody just got taken back for surgery.   YAY!   Now let's pray all goes well today.   We will post updates as we get them.