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.  

Quick Update

Sorry we didn't post back sooner.

Brody got his chemo as scheduled last friday. Unfortunately the surgeons had not had a chance to evaluate Brody's scans prior to his scheduled chemo. We spoke to Brody's oncologist about "holding" his chemo til we hear from surgery but Brody's oncologist did not feel comfortable about doing this as there is not guarantee that the surgeons will agree to attempt the surgery and he didn't think it prudent to withold it without a plan in place. Trish and I discussed this and we agreed with his judgement- We were both kind of wanted to get the ball rolling and do anything to move this along to get this going. Trish palpatated Brody's belly again on Thursday and to her the tumor felt a little bit smaller (was lower anyway) then the previous week. His "bulge" on his left back (is still subtle) and did not look any bigger, so if the tumor is growing still, it is doing so slowly.

Trish and I did speak to Brody's doctor about having the tumor board at Memorial Sloan Kettering also evaluate Brody for surgery again also-- this is so we have another set of eyes looking at it and also because Dr La Quaglia there specializes in doing surgery on tumors including Sarcomas and may think he can attempt it when the local surgeons may not... we thought getting concurrent evaluations may move this process along. With Brody receiving his Bevacizumab last Friday, he earliest he could have surgery would be 4 weeks after that. As mentioned previously Brody receives Bevacizumab every 2 weeks.

Anyway-- Brody has continued to feel well. He could eat a little better (still finicky) but for the most part he has a good appetite and feels fine. His hair is continuing to grow and he is about due for a haircut.

Really, thats about it with us.... the boys are continuing their homeschooling and doing pretty well for the most part.

Thats about it for now....

Bill

Jan 5th

First of all, sorry for the lack of updates but there really just wasn’t a lot to report and as we have always maintained, no news is generally good news at our house.

Unfortunately, we have do have some news to report that isn't so good.

The good news is that Brody has a been feeling fantastic—he has been super hyper lately, laughing, playing, tormenting his big brothers at times. He got his cast off a few weeks ago (it is split now and we put it on only at night with velcro straps) has been doing real good with school and has been enjoying just being a kid. He also has been eating real well lately. He has been playing a fair amount on his new Nexus 7 tablet he got for Christmas and last night he gave me a pretty good lecture on how to play Minecraft on it.

The bad news is that Brody’s tumor appears to be getting larger both visually and by the CT that he had yesterday. Trish and I noticed about 8 days ago when doing Brody’s dressing change for his nephrostomy tube that it appeared as if there was a slight bulge on his left side about where his kidney is, maybe a little below… you can’t really see the bulge with the dressing on and it was fairly subtle (meaning we just may not have noticed it before). Trish regularly palpates his tummy and the upper edge of the tumor has been since last July just below his belly button—it is now about even and maybe slightly above his belly button. Brody had a CT yesterday and Brody’s oncologist reported to us that the tumor appears to be about ½ a centimeter or so bigger then the previous CT done about 2 months ago. We also changed Brody’s dressing again on Friday night and the “bulge” looks slightly larger then the previous week.

The oncologists are of the opinion that the chemo appears to still be working but that the tumor is so large that the chemo drugs aren’t getting to the entire tumor and that it is slowly growing. They and we are in agreement that we need to get proactive with Brody’s treatment and try to get ahead of it. As mentioned previously, the chemo regimen Brody is on is a “maintenance” chemo—meaning that it isn’t overly aggressive against the tumor but is also less toxic (meaning he feels better while on it) and is more intended to hold this type of cancer at bay—obviously better when the tumor is small. Since we have already tried the standard chemo treatments (back in May, June,  & July), and they were not effective, we are planning on getting a surgical consultation next week done and we are hopeful that the surgeons are confident that if they can’t get the entire tumor, they can at least remove part of it so  there is less tumor to treat with the Chemo Brody is on, and also give him more room in his abdomen for his organs (kidneys and bowels mainly) to function (and be rid of his nephrostomy tube). 

I wish it were just this simple but it’s not--- one of the Chemo drugs Brody receives (every 2 weeks) is called Bevacizumab (I can’t say it either)—this drug is believed to be effective against tumor growth by preventing new blood vessel formation. Unfortunately after surgery your body needs to be able to grow blood vessels so you can heal so they have to stop giving this drug before and after surgery. Trish looked this up yesterday and it is generally accepted practice to be off this drug for 4 weeks prior to surgery and another 4 weeks after. Brody last had Bevacizumab 8 days ago and if he starts his next Chemo round, he would be due to get this it again this coming Friday. We should know in the next week, how we are proceding--- the best time to pause his chemo is now as he just had his OFF chemo week so his counts will be higher for fighting infection or what not if we go with surgery in about 3 weeks (his 4^th week off of Bevacizumab). They will likely stop his Vinerolobine (given 3 out of every 4 weeks)  and oral  Cyclophosamide (he takes this orally every day) too so his counts are higher when he has the surgery. 

Anyway, that’s where we stand now. We should know more by next Friday about how we will proceed. Trish took the boys down to her sister's in Chattanooga Tennessee this weekend for the boy's cousin's birthday party and to visit... I am working this weekend after my nearly 2 weeks off for Christmas/New Years (a well needed vacation)-- I ended my vacation with 2 days of homeschooling the boys (they resumed on Jan 2nd) which makes me appreciate teachers all the more.

We are all doing as well as can be expected, we have tried to be open and honest with Brody throughout this ordeal-- when Trish told him they might be doing surgery to take out the tumor because it looked to be growing again; he was worried that it was happening that day-- when Trish told him it wouldn't be for a few weeks at least, Brody was happy again and got back to his Tablet... As kids do and as Brody illustrated-- He lives his life "in the moment" and if  we have learned anything from all this, it is to live life in the moment and cherish those moments because none of us know how many of those we will have.

Once again, We would like to thank everyone that has supported us through this ordeal and followed our blog--- concern, compassion, assistance, prayers, thoughts, words, and just listening all make this easier.

Bill & Trish