Brody doing ok after surgery today to place "stent" in ureter

Brody had surgery today to place stents in each urterer.    His surgeon that is performing his major surgery tomorrow morning wanted the "stents" placed so he could better feel,  protect,  and distinguish his ureters.   They were only successful with placing the stent on his right side though.    Brody's tumor is occluding the left side too much.   His left kidney is not functioning very well and his left urterer may be no longer functional from the tumor being wrapped around and up against it so long.   So Brody may also have his left kidney removed tomorrow when they are removing the tumor.   His surgery to remove as much of his tumor as possible is scheduled to begin at 7:45am tomorrow morning.

Brody is feeling ok following today's surgery.   He is not complaining of any pain from the stent placed on the right side.   He is urinating without pain also.   However,  his eyes have been hurting him quite a bit since the surgery today.   We are not sure if his eyes are just extremely dry or if he actually managed to scratch his cornea somehow during the surgery today.   Those in the operating room did not notice Brody do anything that would injure his eyes.   They also said that his eyes were lubricated with artificial tears eye ointment, closed,   and taped shut during the procedure.   So we are not sure why his eyes are hurting him so much.   He says they burn.   His eyes are feeling much better late this evening compared to this afternoon.   Brody says they do not hurt if he keeps his eyes shut but when he opens them they still hurt.   So he is refusing to open his eyes.   He will not let any of the docs look at them either.   If they are still bothering him tomorrow they plan to take a closer look at his eyes tomorrow during the surgery too since he will be asleep and not notice anyone checking his eyes.   Brody is asleep now and is not too worried about his surgery tomorrow.   He wants to have the surgery done so he can get rid of the tube in his back (nephrostomy tube)  and be able to get back in water again when he's healed.   His favorite thing in the world to do is play in the water.   And he really wants a regular bath or shower again.   He is not a fan of the sponge baths he has been doing for the last 9 months.   So anyhow,  Brody remains in good spirits despite all of the eye pain simply because he wants the tube out of his back.  

I am,  of course,  very nervous about the surgery tomorrow but I will choose to focus on the positives just like Brody.  

Feb 11

Not alot to report.

Brody is still scheduled for surgery on the 28th. He got his Chemo on Friday minus the Bevacizumab. He is supposed to continue is other chemo drugs until the 22nd to allow his counts to recover a bit before the surgery and I assume he will resume the other chemo soon after. As mentioned before, the Bevacizumab must be held for 4 weeks prior and 4 weeks after surgery. They plan on admitting Brody on the 27th to get his ureter stints put in and since they may be "uncomfortable" they want him overnight so they can manage his pain. Also, his surgery is scheduled for pretty early in the morning (we were looking at waking up at 5 am to get to pre-op by 6:15-- Surgery scheduled for 7L45)

We are planning Brody's 7th birthday party for late next week. His Birthday is actually on March 3rd but he most likely still be in the hospital recovering from surgery (if this surgery is anything like his previous one).

Nothing else going on. Brody continues to feel and act like any other 6 (almost 7) year old. He is excited about his birthday party coming up and is hoping his friends from school last year can make it to his party.... we are having it at a bowling alley.

More later....

Trish & Bill

Watch "Brody Excited Racing Pinewood Derby Car" on YouTube

https://www.youtube.com/watch?v=6HtXQnz9PaQ&feature=youtube_gdata_player

Good CT Scan Results Today

Brody had a CT scan today.   We got good news that the tumor has not gotten any larger since his last scan.   YAY!!!  Brody has also been continuing to feel very well and has had loads of energy.  

Geordi and I have been sick with a nasty cough since last Sunday.   We are both keeping our distance from Brody and have been washing,  washing,  and washing our hands and going through a lot of hand sanitizer too.   Geordi and I have both been feeling much better today though so hopefully soon these yuckies will be gone.   

The boys all competed in the Cubscouts Pinewood Derby last weekend.   All three boys won a trophy for 3rd place for speed in their den.    They all had a great time racing their cars and visiting with their Uncle Dan,  Papaw,  and Grandma who had come up to watch the race.   It was so much fun to watch the boys get so excited when they realized they actually had won a trophy.    

Saturday

(Note-- I know this is redundat but I wrote this yesterday but wanted Trish to read it before I posted it so saved a draft of it-- she didn't know I had written this but thought I'd post it anyway)

Brody had his scheduled Chemo today and I (Bill) spoke to Brody's oncologist this morning. He had talked to the surgeon who we consulted with on Monday and they are in agreement that Brody's best option would be for him to have "De-bulking" surgery--  this is to remove as much of the tumor as they can so the chemo has less to work on and to give Brody more room in his abdomen. That surgery is scheduled for Feb 28th, so he did get his Bevacizumab this morning.

From everything that Trish has researched, this is his best option at this point. I am so thankful Trish is a pharmacist and at least has a grasp or how the chemo drugs work and how to "wade" through all the results you get when you try to look up info on the internet.

We are both excited and anxious about this. We obviously want this tumor out of him, but we are anxious because we will need to withhold his Bevacizumab for 4 weeks before and after this surgery and we are fearful that the tumor will grow significantly if it is withheld and maybe cause other issues.... it may seem weird to most but you do take comfort in getting chemotherapy (even when it was as toxic like those Brody had previously)-- I do recall feeling unsettled when Brody finished his initial treatment 2 years ago because we were not longer being proactive with his treatment. And that chemo did take quite a toll on Brody (severe nausea, GI issues, weight loss, etc). The chemo he is on now is alot less toxic and as a result he feels perfectly fine 99.9% of the time and other then the tube out his back, he looks and feels perfectly healthy.

The plan currently is to have a CT done next week to see if the tumor has grown in last month (hopefully none). Then just before the surgery to they want to install stints in his ureters (both) so the surgeon can feel them and not damage them during the surgery. Apparently the stints they will use can be uncomfortable so they want to wait til just before the surgery to do this and then remove them soon after with hopefully good urine flow through both-- at that point he can get his nephrostomy tube removed.

Anyway... that's where we stand now.

(the above was written yesterday-- below is from Today)

As many of you may know, Geordi was in Cubscouts last year-- Jaden was not interested in it last year and Brody was too young. Since the boys are being homeschooled, we thought they needed to spend at least some time with kids their own age so we signed Brody and Jaden up earlier this month. Neither of them have even been to a Den meeting yet and their first event happened to be the Pinewood Derby today--- we worked pretty hard on the boys cars the past week or so to get them ready. They competed against boys in each of their Den's (Geordi is a Weblos I, Jaden is a Wolf, Brody is a Tiger)-- The boys were very competitive (it was close) and coincidentally-- each boy placed 3rd in Speed in their Den's... the boys had fun playing with their friends when they weren't racing-- Both boys new several of the kids in their den from school last year so. Trish's parents and brother came up to watch and boys had a really good time.

I guess thats about it for now....

Bill

Brody Will Be Having Major Surgery Feb 28th

Dr.  Stockman (pediatric surgeon) ended up meeting with Brody's oncologist this week.   When we had met with Dr.  Stockman he definitely was not leaning towards doing surgery just yet.  But now after discussing Brody's case further with our oncologist he does now feel that surgery is the best option for Brody.   The chemo does not appear to be keeping the tumor from growing (I can see it and feel it getting a little bigger).  The hope is that with surgery to "debulk" the tumor,  it will be much smaller and the chemo will be more effective/be able to reach all of the tumor to kill it better.   We are,  of course,  very worried about all the things that could go wrong during the surgery.   It sounds like it will be an extremely,  majorly aggressive surgery.   The surgery will be on Feb 28th.   He will have a more minor surgery to place stents in both the right and left urterers a few days before his major surgery.   These are mainly to help the surgeon better feel and protect Brody's urterers during the debulking surgery.   Our oncologist does not want Brody to get the internal stents earlier because he is afraid Brody might find them to be "uncomfortable. "   I am really pretty bummed about that.   I was excited at the thought of Brody being able to get in the water again soon.   So was Brody.  

Brody's 7th birthday is coming up on March 3rd.   It is likely Brody will still be in the hospital recovering from his big surgery on his birthday so we are thinking of probably celebrating early before he has the surgery.   Not sure what we will do yet for his birthday celebration.   We will let Brody make that decision.   Hard to believe he is going to be seven years old soon.   He's my youngest,  my baby.   Time goes by so fast!  

Well,  it's very late so I had better get some sleep.   Keep praying,  wishing,  crossing fingers,  toes and whatever else you can think of for us.  

Had Meeting with Pediatric Surgeon Today

We met with Dr.  Stockman, a pediatric surgeon,  today.   He is the same surgeon that operated on Brody in June of 2010 to remove his tumor before.   He told us today that basically he is not able to perform an operation at this time to remove all or part of Brody's tumor.   He said that his concern was that the tumor is wrapped around the ileac artery and ileac vein providing the supply and return of blood to the left leg.   And also the tumor is wrapped around the ureter on the left side and is generally very large and in very close proximity to many vital structures.   He stated he was "thankful to the Lord" that they were able to get Brody through the surgery in June of 2010 without any major problems and that this time it would be even more difficult.   He was concerned that operating could cause more harm than good and stated that his experience has demonstrated that outcome/survival for recurrent rhabdomyosarcoma are poor and that surgical intervention in his experience has not improved this.   He stated that those are his concerns but you cannot just give-up either.   He said he would need to converse with our oncologist more to better be able to make a decision as to whether or not surgical intervention truely has a chance of helping Brody.   He also said that before performing a surgery to remove some or part of Brody's tumor that he would like Brody to get an internal stent for his left urterer rather than external one he has right now (his nephrostomy tube and bag).   He said that it would make it easier for him during the surgery to remove the tumor away from the left urterer without damaging it if this was in place.   He also said he would like Brody to get another round of chemo and get another CT scan done at the same point in the cycle to have another comparison CT scan to better determine if the tumor is continuing to grow still or if it has regressed or halted.   He would not want to do surgery if it is staying the same/not gaining ground.   When I feel Brody's tumor,  it does feel smaller to me than what it did the day we had our last CT scan.  

We do not yet have any second opinions from surgery group at Sloan Kettering.   We will seek a second opinion but do agree with Dr. Stockman right now that we should not yet operate.   We will still have other surgeons look at Brody's case though in case we do get to that point.  

I talked to Brody's oncologist today after talking with Dr. Stockman and he said he would get the ball rolling on getting Brody scheduled for placing the internal stent.   He said we would not have to hold any of his chemo for this procedure (thank goodness!!!).   He said he would also order the CT scan for same timeframe in chemo regimen as when we had the last one performed.   Then,  he and Dr.  Stockman would both review whether surgery would be necessary or not after the scan is complete.  

Brody will be very happy to get rid of his nephrostomy tube and bag.   This would mean he could get in the water again once he is healed from this being removed.   He says he gets to pick the waterpark!   This is one procedure Brody is definitely looking forward to.   He loves to be in the water.  He's very excited about the possibility of being able to do this again.  

Enjoying a Warm Day in January Hike at Caesar's Creek State Park

Brody Holding a Turtle at Caesar's Creek Nature Center

Brody had fun holding mice and a turtle today at a nature center close to my Mom and Dad's house today.

We Have an Appointment with a Pediatric Surgeon

Just a quick update to let folks know we have just been scheduled an appointment for Monday to talk with Dr.  Stockman,  a pediatric surgeon that practices here in Toledo.   So relieved that we should be able to get an answer early next week as to when and if surgery is doable at this point.  

Brody is continuing to feel well.   His tumor still seems to be staying about the same size at least in the areas I can feel it under his skin.    This is, of course,  is quite a relief.   In the past once his tumor started growing again it really,  really started growing fast.    Yesterday though,   he was complaining consistently of his belly hurting whenever he moved or sat in certain positions.   So this has made me even more nervous than I normally already am.   At least our consult with the surgeon his coming up soon and Brody feels just fine most of the time right now.   Just gotta enjoy what we can each day and focus on all the good stuff and not dwell on all the things we cannot control.  

I know we have a lot of folks praying for us and we do appreciate it.   I would like to ask that you include a dear friend of ours and her family in your prayers as well.   Her father is in the ICU on a ventilator with sepsis and lots of fluid around heart and lungs.   Her father helped put up a jungle wall mural for Brody when Brody was sick and in the ICU back in 2010.  There is a pic of his wonderful job on our blog.   We love them like family and are so saddened about what our dear friends are facing right now.    Love,  hugs,  and prayers to our wonderful friends.