Wednesday Night

Brody has "slightly" inproved the last few days-- His nerve pain (back and leg) has been pretty rare the last few days (he did have some back pain a few hours ago) so we are hoping the nerve pain meds he has been receiving are coming on board-- they all take time to start helping.

His Belly pain has been much improved since his NG tube was placed-- it still occurs when he is awake and is sometime pretty severe but he has been resting much better the last few nights (sleeping 7 or 8 hours at a time) so him and I (Bill) have been getting some more rest. We have been trying to get him to lay off the morphine button with the belly pain-- as it doesn't seem to help him much and the pain usually passes quickly whether or not he pushes the button.... if it does persist or is particularly painful then we do urge him to push the button-- (for those that do not know-- he has a PCA pump-- which will deliver a small dose of Morphine if he pushes a button-- it will then lock out for 10 minutes before he can get another dose). His Basal Morphine (constant drip) has been getting taperd and was discontinued a few days ago and he has tolerated this ok. His button push morphine dose was reduced today... the whole idea is to try and manage his pain other ways (no Opiates) which can slow down his gut motility and may be contributing/causing his belly pain.

His NG suction was discontinued today but the tube is still connected to a small bag and' any excess gastric liquid in his stomach will gravity drain to the bag-- this makes us a bit nervous as him not tolerating this will be him vomiting-- and we don't want him to throw up his new Chemo.

He has been reluctant to get out of bed which is troubling and not helping his gut motility. Although he can get up and walk with assistance (the assistance is holding his hand for some balance and moving his IV poll and helping to carry his NG and Nephrostomy bags)-- he seems to either have pain when sitting in a chair or is afraid of pain when sitting in a chair-- I'm sure he would tolerate this pretty well if he would try it more-- we need to be a little bit more insistant on this.

We are exploring nerve block options if we cannot get his pain under control-- it is possible to either temporarily or pernamently block the pain the nerves in his leg and belly t is nice to know this is an option if we can't get his pain under control or if worsens-- there are pros and cons with having this done as it can mask symptoms.

We are all managing as well as can be expected-- we have a meeting tomorrow with people from all the different teams that are managing his care here (oncology, surgery, GI, AIM team etc)-- the idea of this is to try and get everyone on the same page on where we want to go and the steps to get there. Talking to Trish we would love to get Brody home)whether we can do this with him on TPN is something that will have to be addressed-- he also cannot be on Morphine and his pain must be managed) We may have to settle on getting him back up to Toledo Hospital-- while the care we are getting here has been excellent- we are about 2 1/2  hours (143 miles) from home and this has been difficult in and of itself. This hospital and Ronald Mcdonald house are very nice, Brody's room is on the 12th floor with giant windows we can see for 20 miles-- so if you have to be stuck some place-- this is a very nice place to be stuck but even after 4 weeks, it is still somewhat unfamiliar.

Trish and I did have a very nice surprise yesterday.... a friend and co-worker of mine Dan and his wife Shirley, arranged to have a very nice steak and seafood resturant deliver an excellent meal to the Hospital for us-- Brody was feeling pretty well at the time and so we both got to sit down to a nice meal together in the Parents lounge with a nice view of Columbus... Thank you so much for the delicious food and the short but sweet break from all of this. Dan also went over to my house and did a bit of needed maintenance on my Air Conditioner that I have been unable to get to the last 6 weeks or so.

Thanks once again for all the support we have gotten-- I just got done waking up Brody to take his oral chemo-- cross your fingers he keeps it down,

Bill

Busy Weekend

As usual in our family (not just Brody)- we always have things pop up on the weekend and this one was no different... On Saturday-- Trish took Geordi back up to Whitehouse on Saturday afternoon and came back that night--Jaden went along to see the dogs Geordi has a boyscout camp that started on Sunday and he needed to finish packing and stuff.

Brody started having increasing belly pains-these pains were similar to his obstructed bowel pains-- hurt really bad for a few minutes and then ease off for a period of time and then come back-- sort of like belly gas pain cramps-- these seemed to worsen overnight on Friday and vomited Saturday morning-- it was once again the green color he had when his bowel was obstructed. His NJ feeding was discontinued most of the day and we resumed it at 3 pm. About 4 pm he started having increased belly pains (frequency and severity)-- and in addition, while he was still putting some liquid into his ostomy bag, he was putting in very little gas-- although I could feel signficant rumbling in his belly-- I expected more gas then anything else if his bowel was moving. They took some X-rays and there looked to be some liquid/gas seperation in his bowels (like the bowels are not moving stuff through them).

About 5 pm or so we got results from some cultures that were drawn on Friday-- both his urine and stool tested postive for an unidentified (yet) type of yeast infection-- some of these can be dangerous so they took Brody down and he had a kidney ulrasound done to check out the kidney for signs of any problems (his kidney function labs have been excellent)-- they also checked his port (central line) for signs of a clot as this can be a potential colonation site for bacteria where it enters his jugular vein-- both hid kidney and central line looked good but his belly pains continued to be pretty bad (on the bright side his back and leg pains have not been much of an issue). I asked the resident to discontinue his NJ feedings until we can get a handle on his belly pains that seemed to correlate with the feedings. They have NOT stopped his TPN feeding via IV so he is still being nourished.

The belly pains continued overnight and into Sunday morning but decreased in frequency and severity overnight so we both thankfully got a reasonable amount of sleep (at least 2 hours at a time)-- they did pick back up from about 9 til 11:30 and then settled down again and he slept for a few more hours-- when he woke up they were continuing pretty bad-- they did another x-ray and the bowels looked to have worsened sligtly-- the GI doctors and Surgeons evaluated him (surgery was consulted to evaluate the functioning of his stoma).. All the doctors pretty much agreed that his bowels just are not functioning properly probably due to a combination of the infection, surgery, as well as continued morphine use and the best way to treat his belly pain is via decompression (an NG tube)-- the NJ tube is too small and not designed for this so Brody had to have another NG tube placed in his other Nostril (he has an NJ on the right and NG on the left now)-- as expected-- he vomited quite a bit of green vomit again during the placement and seemed to feel alot better after-- he has also drained another 300 ml so far out of his NG tube (it is being suctioned by a very soft intermittent suction)-- he has had some belly pains since the placement some severe but they seemed to be less frequent so far.

After the NG tube placement we gave him a bit of a break and then we (Trish and I) replaced his Ostomy wafer (this is the tape part that goes around his stoma-- the actual colostomy bag clips onto this (kind of like a tupperare seal)-- these need to be replaced at least weekly but so far we have not had one go more then 5 days without starting to leak (gets past seal and tape)-- we were at day 5 and didn't want to go another day-- his stoma is shrinking and healing nicely (as it is supposed to) and this went ok.

In addition yesterday-- the IV in his hand (his Port can handle all the stuff he has to get) failed again and he had to get a new IV placed in his other arm-- they of course numb the site where he is poked but he still handled this very well.

Brody has handled all of the above remarkably well-- he has a toughness I can't describe-- he has an ability to move on from bad episodes to good instantly-- as I write this at 11:30 pm on Sunday-- he is playing on the playstation a game called Infamous 2.

+++++

Brody wanted to go to sleep last night so I paused this entry until the morning so the laptop screen light wouldn't keep him up. Brody's belly pain has significantly improved since the NG tube placement-- he is not at all happy with the other tube but I'm sure he feels better. He did take his oral chemo last night and they just paused the suction on the NG for an hour or so to try and let it absorb-- this chemo is primarily absorbed in the stomach so we are hoping he got his full dose absorbed. His nerve pain (leg and back) seemed to increase overnight but so far this morning hasn't bothered him too much.

In addition to all the issues above-- his BP and heart rate have been going back up the last few days-- at this point I just want him to have a break from the pain-- it isn't constant but either the belly or nerve pain have been waking him up and a hospital is already not a great place for getting rest... thankfully he (like his dad) is a hard sleeper so can usually fall back asleep fast if he isn't in pain.

Our immediate goals for going home-- is still pain management and gut motility (we have to transition him off of the TPN and on to the NJ feeding)-- he will also need to complete his antibiotic course which should finish at the end of the week.

We are hoping to manage his pain without morpine which isn't helping his gut motility

Sorry for writing so much-- a lot has gone on and not much good :/

We are ready for some good news

Bill

Friday Night-- Brody sleeping comfortably right now.

Brody has continued to have intermittent pain-- some times worse then others. His leg has not been too bad today but his back has been pretty sore... I (Bill) need to stay pretty close at all times-- I did sneak across the street to Ronald McDonald House for dinner but otherwise-- the farthest I've gone away from his room is down stairs all week just in case he needs me to rub his back or his leg. It sometimes does not feel like I'm helping him but he doesn't want me to stop even when he is in extreme pain so I keep rubbing his lower back softly and it does seem to help eventually (sometimes quickly but not always)-- I'm quite sure Trish or anyone else could do it as well as me but he doesn't believe it and I have very warm hands so that is my job right now

While he is definitely experiencing nerve pain, I'm of the opinion that his back muscles are involved at least somewhat-- sometimes it will stop hurting if he gets up and/or changes sitting positions in bed. He still finds it uncomfortable to sit in chairs at times but once again-- I'm of the opinion that some of it is anxiety/muscle involment-- he will get anxious about something, tense up, and the nerve pain follows-- the atavan has become our "go to" medicine right now because it usually works within minutes-- it relaxes him and sometimes makes him fall asleep... if he does stay awake he will be a little loopy for a while. We are not giving it around the clock since we don't want him sleeping all the time but if we can't relieve his pain within a few minutes of rubbing then we call for the Atavan (which can be given as needed but no more then once every 4 hours)-- he has been getting 3 or 4 doses per day.

Thankfully he is not in constant pain and I loved hearing him laugh at Geordi today when Geordi did something on a video game that Brody saw and was apparently funny. We have gotten a TON of use from our playstation that we brought down with us.... we have all of our video's, a few select games, and thankfully the internet here is pretty fast and reliable and we have been watching via our Playstation 3-- Netflix, Vudu movies (we have bought or rented quite a few movies while stuck here), and at least a little bit of Amazon prime streaming service (Brody likes watching "the rugrats" sometimes and this is only on Amazon prime).

Brody has had a persistant fever the last few days-- the bacteria from his infection last week has been identified and is susceptible to the antibiotic he has been taking and all his blood cultures since 24 hours after his positive have been negative-- we are concerned of infections somewhere else in his body or the bacteria has developed resistance so they have been taking cultures from his stoma, stool, urine, nasal, and throat-- and we have gotten the infectious disease physicians involved. It is possible it is a viral infection too so that is  being checked too. It is possible that the tumor is causing the fever even though he has spiked up over 102 degrees a few times--- I'm sure Trish will correct any of my mistakes in the above paragraph-- I usually get the gist of the dicussion of such things but frequently miss some details...lets blame this on my lack of sleep.

As mentioned in a previous post-- Brody got an NJ tube placed yesterday-- this goes through his nose, down his throat, through his stomach and through the first foot or so of his small intestine (Duodenum) to the jejunum (where the "J" comes from)--- this is a feeding tube as he is unable to adequately nourish himself yet and is going to replace the TPN that has given him nourishment via his IV-- since his surgery. He will slowly transition from one to the other-- his NJ nourishment will slowly be increased as his TPN is decreased..... this is a necessary step (besides pain control) in order to go home. He will still be able to eat with the NJ tube in place but so far he has not been eating nearly enough to adequately nourish himself (calories or viatamins/minerals)-- they are giving him a small amount so far-- 10 ml per hour of pediasure to start. This is will slowly be increased as he can tolerate

We are all doing ok overall-- we have all learned to live in the moment.

Brody is sleeping comfortalbly right now as should I-- he will be awoken in about an hour to take his pazoponib (the new chemo he started on wednesday) pills which have to be taken on an empty stomach.

Thanks once again to all the support we have gotten-- you have all made a very difficult situation that much easier.

Brody still battling significant nerve pain

The last few days have been extremely difficult.  Brody has been having several episodes of intense nerve pain in his leg (and sometimes his back).   They can last from 10 mins to well over an hour at a time.  Yesterday, it seemed like as soon as he finished with one episode it wasn't long before it started back up again.  They seem to happen with much more frequency whenever Brody is awake.  Sometimes he is awakened from his sleep by them but usually once he is asleep things calm down for hours at a time.  This is motivating us to try and let him sleep as much as possible right now until we can get better control of the pain. 

 

Nerve pain is extremely difficult to treat.  Usual pain medications do little to stop the pain.  The medications given for nerve pain can take 2 to 3 weeks to really come on board and start working.  Brody has been started on Neurontin, Clonidine, high CBD content Hemp Oil, Ativan and Lidoderm patches to help combat the nerve pain.  Amitriptyline was also considered but it wasn't started due to concerns of QT interval prolongation.  But so far we have not seen improvement overall.  The Ativan does help calm him during the episodes and then once the pain finally subsides, he's tired from the Ativan and falls asleep.  We consider sleep a good thing day or night right now since there are much fewer problems if he is sleeping.  Another bad thing about medications to treat nerve pain is that in a very large percentage of people they simply still don't work even after a few weeks.

 

We talked to the Advanced Illness Management Team yesterday about the possibility of doing a nerve block.  The doctor to do this seemed a little reluctant to consider a nerve block just yet.  She explained that this is the most invasive option available to manage the nerve pain.  She wanted to give the Lidoderm and some of the other options a little more of a chance.  She did say that she will go ahead and look over all of his scans and start mapping out how to perfom the procedure in case it soon comes to doing the procedure.  She wants Brody to try a TENS unit today too. She will back today to talk with us more about how Brody's doing and whether to move forward with a nerve block.  Although the nerve block is invasive,  I want him to get it.  I can not bear to watch him suffer for weeks waiting for the medications he has started to hopefully work (We don't even know if they will work).  Plus if his tumor is getting larger, I can only imagine that things will get worse and worse in the nerve pain department. 

 

Yesterday was the hardest day for me in our cancer battle so far.  Brody was suffering terribly and there wasn't anything I could really do to help him.  This pain has so far just been completely unmanageable.  On top of that, I know he's dying.  I am praying for miracles but I know he's dying.  When you lose hope, getting through this feels impossible.  My biggest fear all along has not been that Brody would die.  It's always been that he would suffer terribly in pain before dying.  Right now I feel like I am living my greatest fear.  The only thing that is getting me through is the hope the nerve block will work and focusing on just trying to let Brody sleep in the meantime so there are less episodes. 

 

Brody will be getting anesthesia tomorrow, to help him get a PET CT, MRI, NJ tube placed, and nephrostomy dressing change.  I am hoping he can also get the nerve block procedure tomorrow too while he's under.  Brody normally does the scans with no sedation whatsoever but he has been in too much pain to lie still for the scans so needs the anesthesia for these.  The scans will serve as a baseline we can use later to determine if the new chemo he is starting is working or not. 

 

Brody is certainly very frustrated/angry with everything that is happening to him.  But, he is pulling through things one episode and one moment at a time.  When he does have moments that he's awake and not in pain, he is still happy and just concerned with the next fun thing to do.  He doesn't really dwell and stew over all he's going through.  But, he's longing for home and wanting to feel half-way normal again.  We are doing everything we can to make that happen.   

 

Brody is not having neurosurgery tomorrow...Brody's eating and drinking without vomiting...He will start Chemo tomorrow..Still having trouble controlling Brody's pain

After much thought, Bill and I have decided not to do neurosurgery yet.   The primary purpose of the surgery would be to relieve pressure on the nerves in Brody's spine/spinal canal to hopefully relieve Brody's nerve pain in his left leg, back, and butt.  The surgeon made it clear that he wouldn't be able to remove very much of the tumor but hoped it would be enough to help Brody's pain.  Pain relief is very important, of course.  And, at first we planned to do the surgery because at the time he was having a lot of nerve related pain.   The next day couple days after making this decision, Brody's pain seemed to ease up a lot.  It wasn't as severe nor frequent.  So we changed our mind about proceeding with the surgery.  If we were to do surgery we would prefer to wait until after we can determine/find a chemo regimen that can at least hold Brody's tumor stable.  Otherwise Brody could go through the surgery, experience the extra pain from the surgery, and then have his tumor quickly grow back to the size it currently is and he's be right back where he started. 

Unfortunately, today and yesterday, Brody has started to have more frequent and more intensely painful bouts of nerve pain in his left calf.  It can last from 10 minutes to over an hour at at time.  He did manage to sleep overnight for about 6 hours without any episodes last night though (Thank goodness).   I am so glad he had a good stretch without any problems.  He has been hitting his morphine button over and over and waiting for the soonest opportunity to hit again to relieve his pain.  His bolus doses and basal amount have been increased upward again.  But, still the morphine does little to help his pain.  He has gotten to the point now where he feels it's pretty much a waste to hit the button because he no longer expects it to help him.  He is very much reliant on Bill and his warm, massaging hands.  Bill cannot leave his side.   Brody needs him there for whenever the pain starts back up.  (He doesn't think mommy can massage his leg as good as dad.  I tried warming my hands in hot water first and trying to do it the same way it looks like dad is but I just do not compare, apparently.  I listen to Brody and what he wants but, no good.  He had some very severe pains this morning when Bill was not there and he had to let mommy try and help him.  Unfortunately, I wasn't enough to make the pain tolerable for him.  I don't think Bill could have made those episodes tolerable either though.   Now, Brody totally doesn't have any faith in my leg massaging abilities).  Bill has spent many hours massaging Brody's leg to help make the pain more tolerable. 

Brody was started on a clonidine patch last night to help with the nerve pain.  But, it takes 2 to 3 days for it to really start to take effect.  Brody was able to swallow a hemp oil capsule tonight.  If he can start taking the hemp oil capsules again regularly, hopefully it will help too.  (The hemp oil capsules have helped past nerve pain tremendously.  We are hoping it can at least lessen the pain he is experiencing now). 

We talked with the Advanced Illness Management Team today about Brody's nerve pain a lot.  They increased the morphine significantly today (unfortunately it didn't help much) and they plan to have us meet with a doctor tomorrow to discuss doing a nerve block for Brody to relieve the nerve pain. 

Brody has made tremendous improvements in his ability to eat and drink.  He hasn't vomited since Friday!  This is very exciting.  He has been enjoying eating chicken noodle soup broth with crackers, chicken tenders from Popeyes, animal crackers, goldfish crackers, and red tootsie pops.  He has been able to drink larger volumes of water, cran-grape juice, and fruit punch capri sun.  He is nowhere close to eating and drinking the number of calories he needs in a day.  But he is able to enjoy some of his favorite foods and drinks without vomiting.  (Previously, even when not eating or drinking, he was vomiting all his gastric juices etc). 

We have been wanting Brody to get started on the chemo drug, Votrient.  It is only available orally.  Most of the absorption of this drug occurs in the stomach.  So Brody had to be able to swallow it by mouth and not vomit it up for it to be effective for him.  He has finally reached that point.  He should be starting the medication tomorrow.  Excitingly, there was a Phase 1 trial using this medication in children and in this trial there were 8 kids that had stable disease for at least 6 cycles.  Seven of these patients had sarcoma (including rhabdomyosarcoma and Ewing sarcoma).  Based on the analyses done by Genekey of Brody's tumor,this medication is one of the primary agents suspected to be beneficial in slowing down Brody's tumor.   It certainly is not expected to stop his tumor by itself but it may help slow it down.   

I am not sure if we will be able to do so.  But I am hoping that we may be able to add additional chemo agents to the Votrient and hopefully have a better chance of stabilizing the tumor. 

Brody had been fairly stable on cyclophosphamide and topotecan before we entered the HSV trial.  We had to stop this combo due to kidney issues. His kidney is doing much better now that he has his nephrostomy.  So I would not consider this regimen off the table so to speak.  He cannot start the cyclophosphamide and topotecan right now though due to the high fever and positive blood cultures 4 days ago.  He was started on Zosyn (IV antibiotic) immediately after the fever.  The first blood culture was positive.  No further blood cultures have been positive.  The bacteria has been identified now and susceptibility testing show that Zosyn is effective at covering the bacteria.  Brody will continue on the Zosyn for another 10 days.  Due to the degree of immunosuppression with cyclophosphamide and topotecan combo, Brody cannot start these medications until it has been at least 2 weeks since his last positive blood culture and fever. 

As I mentioned earlier, Brody is eating and drinking but not enough to meet his calorie needs. (I am very excited he can eat and drink the things he loves and also that he can now take oral medications.  We wouldn't be able to start chemo tomorrow if this weren't the case. And, he can take his high CBD hemp oil capsules again.  This should help his nerve pain, nausea, increase appetite, and also may possibly help slow the growth of his tumor).  Anyhow, Brody does still have delayed gastric emptying and he has sections of his small intestines that are narrow due to tumor compression.  We have decided to let interventional radiology insert an NJ tube this week.   The tube will run through his nose and down to his jejunum.  This will get it below the level in his small intestines that are not moving well and are narrowed.  This way we can feed him through the NJ tube.  He will still be able to eat with the NJ tube in place and still enjoy the things he loves to eat.  But, we will then be able to supplement additional calories on top of what he eats through the NJ tube. 

Despite numerous painful episodes of nerve pain today, Brody did enjoy watching a few movies, eating some soup, crackers, and Popeye's chicken and talking with mom and dad.  (Geordi and Jaden weren't with us today....Geordi has been in Toledo this past week with friends and Jaden spent today with his cousins at Kings Island).  Brody is looking forward to seeing his brothers tomorrow.  Brody is still tolerating the ridiculousness of everything he has been through but certainly longing for home.  He especially misses his dogs. We are certainly doing everything we can to get him home as soon as we are able. 

Thanks everyone for your continued prayers and support. 

Brody enjoying some chicken tenders from Popyes's

ARGH!!!! A FEVER of 103!!!! And SCARY NEUROSURGERY COMING SOON!

Brody has been feeling good today.  He only had a few episodes of nerve pain in his leg and back and his belly pain has not been too bad.  Brody is afraid to move a whole lot for fear of bringing on leg and back pain.  He had some very short walks today but was not willing to push it too much for fear of pain starting up.  His morphine dose has continued to be tapered down again today.   

He had GI studies done today and we should hear the results of those in the morning.  Unfortunately, he had to have an NG tube placed to deliver the contrast.  Getting an NG tube is absolutely no fun!  

Brody continues to being doing okay in the nausea department.  He did vomit a couple times again today.  But we are thankful that at least it comes on quickly and is over quickly.  No lingering nausea.  He does seem to be putting out more in his colostomy bag today.  Hopefully, this is a sign that his gut is finally starting to think about functioning correctly. 

The neurosurgeon came and talked to us again about surgery to remove tumor from Brody's spinal column/spinal canal after reviewing the MRI of the spine.  He says that he should be able to remove at least part of the tumor in the spinal column and wihtin the spinal canal and that he thinks it should help Brody's current nerve related pain.  He also said the tumor is now pressing against the spinal cord and that he hopes during the surgery the tumor slips away easily from the cord.  This statement made my belly drop.  When Brody had radiation treatments to the tumor within the spinal canal, the tumor was well below the spinal cord.  It's certainly grown significantly within the spinal canal.  The tumor enters the spine/spinal column through the lumbosacral region at L5-S1.  This is the segment where the lumbar spine meets the sacral region (bottom of the spine).  Nerves are being "pinched" in this L5-S1 area and causing Brody's foot drop to dramatically worsen and pain in his back and left leg.   The spinal cord does not extend down into the lumbar/sacral region of the spinal column.  Nerves that extend from the spinal cord to the lumbar and sacral levels must travel through the spinal/vertebral canal before they leave the spinal column.  This collection of nerves in the spinal canal is called the cauda equina.   Brody's tumor is growing in this area with these nerves and is now pressing against the spinal cord.  The neurosurgeon wants to attempt to remove part of the tumor coming though the L5-S1 segments to decompress this area.  He also wants to remove tumor from within the spinal canal.  This is tricky business in both areas, of course.   He made it clear he will not be able to remove all of the tumor within these areas.  He does not want to damage the nerves.  His goal is to remove just enough to relieve the pressure on the nerves in these areas.  The neurosurgeon expects the surgery recovery to take between 2 to 3 weeks and expects Brody to be hospitalized for 5 to 7 days after the surgery.  The plan is to do the surgery as soon as possible and he stated he could plan for early this next week.  He and Dr. Cripe (who is also consulting with Dr. Strunk) still need to discuss the big picture together yet though.  The surgery will  not be scheduled until after all the docs get a chance to discuss and then of course confer with us again.  Right now it sounds like sugery to spinal column/spinal canal is coming very soon and then chemo to follow after healing from surgery.  The chemo regimen Brody will get has not yet been decided.  We may hear more about this tomorrow too. 

Brody was glad to have a visit from Alex today.  (He's a friend of Jaden and Brody's from Toledo Children's).  Brody was pretty tired when Alex was here but he was glad to get to see him.  Jaden and Alex enjoyed playing some Minecraft together.  Alex brought Jaden a belated birthday gift which Jaden and Brody are very excited about.  It's a new game for the Wii.  Alex also  picked up our Wii from our house and brought it down to the hospital for us so the boys could all play it together.  Brody got a fun gift too.  A Lego Firetruck set!  All 3 of the boys will have fun building it together.  We also got some yummy snacks that I am sure Brody will like when he's up to eating again.  It was good to see Alex and family today and it was so nice of them to bring all the fun stuff plus our Wii and mail from Toledo for us. 

I got some surprise pictures sent to me today on my phone by my neighbor and good friend, Barbie Shepherd.  She has been busy working on pulling weeds around my house and putting down mulch.  She sent me pictures of the finished work.  I think she may have had some help too.  She said "some of us thought you could use a little gift" and sent the pics.  Serious AWESOME SAUCE!!  Thank you, thank you, thank you to everyone involved in this project!  Barbie and her daughter Lucy and her son Evan have all been taking care of the mini zoo at the Pizzifred household and collecting our mail.  We have 2 dogs, 1 cat, saltwater fish, freshwater fish, a frog, and 3 hamsters.  This has even included having to clean the hamster cages.  Kinda a yuckie job, for sure.  She's even mowed the grass while we've been away too.  We are so lucky to have such an awesome neighbor! 

Brody fell asleep for a very long nap this afternoon after Alex left.  He was sleeping away.  Unfortunately, he woke up with a fever of 103!   Not GOOD!  And, a vomiting spell too.  Brody's been started on IV antibiotics, cultures were drawn, caps and IV lines were changed.  Hopefully, the antibiotics do the trick quick.  We don't know what the source of the infection may be. 

We are all missing Geordi.  He is in Toledo staying with friends.  He didn't want to miss some Boy Scouts stuff this week and wanted to get busy on some merit badges he's been working on.  We really, really miss him though and I am sure he misses us too.  He's gonna have to come back to Columbus soon.   My mom and dad have been helping us out with watching Jaden and Geordi a lot too.  Jaden had fun swimming at the YMCA with my mom and he got to go to the fair a couple times too.  Geordi and Jaden have each been staying at the hospital with us a lot too.  They both are worried about their baby brother and don't like being away too long before wanting to come back and see him again.  (I think they miss mom and dad too). 

Brody is sleeping comfortably now and I better think about doing the same. 

Thanks to everyone keeping us in your prayers and for all the wonderful support from family, friends, and community. 

POST UPDATE:  Barbie just let me know who all her helpers were this week with yard work and hamster cages.  I big thank you too goes out to Julia Ryan, Doreen Robeson, Lucy Shepherd, Andrew Shepherd, Ryan Koch, Mirissa Corthell, and Carolynn Corthell.  We have such amazing and wonderful friends.  This is just one example of many things that our friends and community have done for us.  Thank you so much, everybody!  It warms the heart to see all your friends, family, and community pull together to help a family through extremely difficult times. 

Brody Update

Brody is continuing to feel a little better each day.   His pain level has continued to decrease the past few days.  At the same time, his morphine dose is gradually being titrated downward.  He has not complained of much belly pain today.  Most of the pain he has had today is neuropathic pain in his left leg.  Bill has become Brody's personal masseuse.  Brody responds well to Bill's nice warm hands.  (Mommy's hands on the other hand are generally ice cold). 

Brody had an MRI today of his spinal column.  He had an MRI last week on Friday of the abdomen and pelvis but it did not provide high enough quality of images of the tumor within the spine and spinal column for the neurosurgeon.  Bill and I spoke with the neurosurgeon this morning briefly about possible surgery to remove at least part of Brody's tumor from his spine and spinal column.  It is evident that the pain he has in his leg, butt, and back are due to the tumor within this area.  The MRI Brody had today will help the neurosurgeon determine what can or cannot be done surgically to relieve Brody's pain.  We should know more tomorrow regarding his thoughts on this subject. 

Brody was also evaluated by gastro docs today.  Brody is not able to keep down drinks or food yet.  He doesn't vomit immediately after attempting to drink or eat.  Fortunately, he has not been experiencing a lot of nausea either.  He has been vomiting large amounts of green vomit once or twice a day though.  It comes on him all of a sudden.  He doesn't have much warning but just suddenly has to vomit.  The large amounts of green vomit  is an indicator that he is unable to move much through his GI tract right now.  It seems pretty much anything that goes in right now is later coming right back up.  The gastro docs are ordering uppder GI studies for Brody.  The goal is to determine if his small intestines have a mechanical obstruction somewhere or if it's more a problem of severely delayed gastric emptying or a section of paralyzed gut that's not moving things through.  Once this is determined, it will be easier to decide how to move forward.   Brody is continuing with TPN and fluids. He has started taking erythromycin by IV to help stimulate the gut to move more.  He is also just starting cyproheptadine to help stimulate his appetite and to help stretch/calm the stomach a bit and help the stomach be more tolerant of contents within it. 

Brody's oncologist here at Nationwide Children's, his oncologist at Toledo Children's, and Dr. Lehrer from Genekey have all been communicating back and forth discussing chemo options for Brody.  The goal is to find a regimen that would be tolerable and hopefully at least slow the growth of the tumor.  Even better would be tumor stabilization.  Brody's prognosis is horrible.  He is absolutely not expected to survive.  Nobody has the expectation that any regimen he may start will ever cure him.  We are hoping to buy more time, so to speak.  And, we are doing everything we can to assure that this time is as comfortable and of highest quality of life possible.  We most certainly need a miracle!

Brody has been getting a little stronger and more stable each day.  We still don't know what the next steps will be yet.  He will have the upper GI studies which may reveal any number of GI issues that need to be handled before any other treatment.  If we decide to do the surgery to remove tumor from the spine/spinal column area, this will need to be timed appropriately with future chemo regimen.  It's likely we would do the surgery first and then once healed from that surgery start chemo. 

Brody was able to enjoy most of an orange popsicle last  night.  He was able to swallow his hemp oil capsule last night.  He also has been asking for water today and drank about 3 or 4 oz of water.  This is much larger volumes in both these circumstances than what he has been able to take in at once before starting to feel sick.  Brody has not vomited yet today either.  KNOCK ON WOOD!   But, this may be due to the fact that they suctioned out between 450-500ml of fluid through an NG tube while he was asleep for his MRI today. 

Brody and Jaden have been enjoying playing Monopoly, video games, and watching movies today.  Brody has been happy and giggling/smiling for much of the day.  And, occasionally giving his nurses a hard time. 

Brody in his Phenergan-Induced Sleep

MRI Results

We were just informed that the MRI, like the CT, shows Brody's tumor has grown a little bit.   A new concern on this MRI is that the tumor is involving the psoas muscle, which is a muscle along the spine that goes into the leg.   This was not the case on previous MRIs and may be an explanation for the leg pain Brody has been having.   Also, the part of the tumor inside his spinal column (area within spinal column below the spinal cord) is just a bit bigger as well.

Neurology evaluated Brody today.  They suspect that Brody's pain in his left leg, lower back, and butt are indeed nerve pain and this is consistent with the MRI findings.  We are not sure of the plan yet of how this pain will be treated.  The neurology team will be talking with the oncology team who will also consult with the pain team and advanced illness management team. 

Brody's leg pain has actually not been much of an issue today though.  He only had one episode of leg pain overnight and so far today has not had leg pain.  KNOCK ON WOOD!  This is a great improvement in how Brody has been feeling the last couple of days.  Hopefully it doesn't become problematic again as we start making him get up and walk around etc.  He has gotten up twice today without major problems.  He did have some pain in his belly but did not suddenly start with the severe pains in his leg, back, and butt. 

Brody has been battling nausea today and has had a couple episodes of dry heaving.  He hasn't had anything really to eat of drink so there wasn't much vomit but certainly a miserable feeling to keep feeling like he needs to throw up.  He has been on scheduled Zofran to help prevent nausea and this continues for today.  He is now getting Phenergan too to combat the nausea.  This medication makes you extremely sleepy though.  Sleepy is far better than nausea though. 

We still plan to make Brody get up and take some short walks today despite the sleepiness.  We feel it simply has to happen for him to get better.  I don't think we will be able to have him take as many short walks as we had planned for him to do today though.  He has to get moving to open up those lungs again and help with so many other things too.

We still encourage Brody to drink or eat as he can tolerate.  With the nausea, we don't want to push it too hard.  But we will keep reminding him that if he can do it that's great.  And, we will be sure he understands this is something he needs to be able to do to be able to go home.  He, of course, would much rather be home. 

We are still pressing through things one step and one problem at a time.  Brody remains in good spirits still despite everything he is going through.  He is an amazing boy!

Brody had a PET CT and MRI, He's Still in the Hospital and slowly making progress

Brody had a PET CT yesterday and an MRI today.  He actually attempted the MRI yesterday too but was unable to complete it because he was in way too much pain to stay still.  He did the MRI today under general anesthesia.  The PET CT showed a lighted area (active area) in his tumor close to his kidney and another spot near where the tumor enters the spinal column.  The CT was compared to the CT he had just before entering the HSV trial on May 29th.  It showed that the tumor has gotten a little bit larger since entering the HSV trial.  It did not grow so much that it would be classified as progressive disease.  So if we choose to continue with the HSV trial, he would still be eligible to participate.  We do not know the results of the MRI yet.  The MRI will show much better the impact of the tumor in the spinal column. 

Brody's breathing has improved; however, a significant portion of Brody's lung is still collapsed.  It's hoped that if he can start to walk, sit-up longer periods of time, and keep up with his breathing exercises, his lung will open back up. 

Brody is still experiencing significant pain and definitely still needs plenty of morphine.  He had to be disconnected from his continuous morphine during transfer to get an MRI today.   He took a morphine bolus before the transfer and it was hoped this would keep him comfortable until being given general anesthesia for the MRI.  Once he arrived to the MRI area, he had to wait for over an hour and his morphine bolus wore off.  He was in tremendous pain. Fortunately, the anesthesia team did act as quickly as possible to go ahead and give him the anesthesia when they realized this was happening.

Our current focus is still to do whatever we can to help Brody recover from his current situation.  He still has the collapsed lung, his blood pressure and heart rate have been very high, he has a lot of pain, and he is not really eating or drinking yet.  He was started on blood pressure medication again today.  We do not know if he will continue with the current blood pressure medication or be switched to something different.  It is suspected that the tumor is putting pressure on the kidney and this is the reason for the continued high blood pressure and rapid heart rate.  So, the plan is to have the nephrologist decide the more longterm treatment plan for these. 

Brody's TPN calorie level will be decreased starting tomorrow.  The hope is that he will start to feel hungry then and want to start drinking and eating again. 

We have been trying to encourage Brody to get up and take walks and sit in a chair rather than lie in his bed.  He has obliged with this sometimes and other times he is totally not willing.  He has been completely exhausted and much of the time he has been either getting scans, tests, exams, is sleeping, or in pain.  There hasn't been a lot of opportunity to concentrate too much on these tasks since he's been stable enough to think about it.  (He was having too much trouble breathing and too high of blood pressure and heart rate to push him too much with this).  His pain medication was increased significantly this afternoon.   Hopefully, this allows him to sleep much better tonight.  Bill and I plan to have him take many, many short walks and spend more time sitting upright tomorrow. 

We are not sure of what are next steps will be as far as treating the tumor.  The surgeon has reviewed the latest PET CT results and is not willing to do surgery to remove or debulk the tumor.  We have not yet talked to her directly.   Instead, she has been asked to review his case and decide whether she could do surgery or not.  She has not talked directly with us about our feelings on this issue.  I would not want to do a surgery right now, of course.   He is much too weak.  But I wanted to have it be an option if absolutely needed later.  If we were to come to the point where we have the choice to place Brody in hospice or perform a surgery with a chance of survival and possibly more meaningful time left with our child, then I would certainly take the risk of the surgery for that chance. 

Once Brody recovers from his current situation, we will need to decide if he will continue with the HSV trial or try a different chemo option.  (We will also need to decide if he should have surgery to remove the tumor from the spinal column area).  I talked with Dr. Lehrer from Genekey for quite sometime on Wednesday night.  We talked via phone and in a go to meeting format.  He presented findings from the biopsy samples that were sent to Genekey awhile ago.  We discussed drugs that are suspected to be beneficial against Brody's tumor.  Several options were discussed but the most relevant possible medication to consider as a chemotherapy option for Brody was pazopanib (Votrient).  I have been interested in finding a chemotherapy agent that we could add to cyclophosphamide and topotecan regimen Brody was on prior to starting the HSV trial.  I do believe that it was significantly slowing down the growth of the tumor.  I was hoping we can find an agent to give with it that would help stop it from getting bigger and maybe shrink the tumor.  So far, Dr. Cripe and Dr. Strunk are both very reluctant to think about multi-agent chemotherpy option for Brody.  We definetly cannot start chemo, period, until Brody is stronger than he is now.  Both Dr. Cripe and Dr. Strunk are concerned if Brody does recover to be strong enough to consider chemo, that he would not be able withstand multiple agents.  I certainly understand  this and have the same concerns.  If he were to go back on chemotherapy, we would likely try Votrient.  (If he tolerates this medication though, I would certainly think about adding cyclophosphamide and topotecan back if he can tolerate them).  Dr. Cripe and Dr. Strunk would be more willing to do multi-agent chemotherapy if they had a regimen with more concrete information as to dosing, schedule, etc etc in pediatric patients.  I did some searching for combos that may already be being used in pediatric patients that would be suspected to be worthwhile to consider based on results from Genekey.  One combination that I found that may fit this would be bortezomib and sorafenib.   I will need to talk with Dr. Lehrer, Dr, Cripe, and Dr. Strunk about this more though.   These are just a few thoughts.  We have a lot to consider chemotherapy-wise if we were to go this route.  And, also the BIG questions of whether to consider chemotherapy or continue with HSV trial.  (I would suspect the HSV trial may be slowing the tumor also and there is the possibility that the immune system may finally kick in and start trying to erradicate the tumor.  I suspect he would feel better on the HSV trial than with chemotherapy too.  But the concern is though that the tumor is growing so far while on the HSV trial and he really doesn't have anymore room in that abdomen for anymore tumor). 

Brody has continued to remain hopeful that he will get better.  He does not realize yet that we may be very close to the last days with our wonderful little boy.  He does know that cancer kills lots of people and that cancer may take his life too.  But, he is not in the mindset that this is very likely going to happen soon to him.  He talks about heaven and what he hopes it will be like and hopes it will not be also.   He wants a dog just like Chewy and one just like Tori in heaven too and no more pain or hospital beds.  He has been talking about heaven more these last few days so it's certainly crossing his mind that his cancer has gotten worse and that he may die.  I don't let him think this is the case just yet.  I believe in the power of the human mind to overcome so many things.  If he still has hope then I believe it's far more likely that he will be with us longer.  I don't want to diminish his hope.  He does not want to die.  He has said many, many times that he is not ready to go to heaven just yet.  He still also talks about all the things he wants to do when he grows up.  He wants a "dog ranch" and wants dogs that get along with cats because he likes cats too.  He wants to be close to Disney World and the beach so he can go whenever he wants.  He says that I (mom) will have to move to Flordia when he grows up so I can help him take care of his kids and take them to Disney World too.  He has been greatly looking forward to setting off a bunch of fireworks he bought.  He didn't realize he had surgery on July 4th and missed the holiday.  When Brody makes it out of the hospital we will have to have a very belated Independence Day Celebration.  (we were suppose to be in Chattanooga, TN with my sister and her family celebrating the 4th rather than in the hospital with Brody having surgery). 

I cannot put to words the awfulness of what we are going through.  My heart is breaking!!!  I try so hard to be so strong and not cry all day.  I focus on the one task at a time and one problem at a time.  I try to keep busy with anything I can to not think about how horrible this is.  But, at night, in bed, it's all over.  All I can do is cry, cry, cry and cry some more.  I try to think about how lucky we have been to make it this far and for all the time we have been so fortunate to have with each other.  I am so thankful for the time we have had but how in the world can a mother face watching her child die?

Got NG tube out today

Pain has been pretty persistent though

About the same

Brody is about the same as in Trish's last post.

His pain seems a little bit worse overnight but it might be a matter of him getting "behind" while sleeping. He is getting a constant drip of morphine but he has a button to give himself a bolus of morphine when he needs it... the idea is to balance his pain control with depressing this breathing/respiratory function-- while sleeping he may have gotten behind a bit and then had pain that wasn't as easily controlled by the bolus.

His blood pressure has been kind of high and he started complaining about some left leg pain last night and today-- it is not all in the same place-- first his thigh, later his calf, later the back of his thigh. His electrolytes are out of whack a fair amount including his potassium and phosphorus which are low so these may be cramping pain. He is also still retaining a fair amount of fluid so they are trying to bring this down with lasix (a diuretic) and simultaneously giving him extra potassium. They have been upping his potassium via his IV TPN (TPN is total parenteral nutrition) which is giving him calories and some fats since he cannot eat yet.

To be sure he doesn't have a blood clot or anything causing the leg pain, he is getting a doppler ultrasound this afternoon to check his blood flow to his leg and while at it are going to look at his kidney also to see if the kidney is causing the high blood pressure.  Brody's nephrostomy tube is collecting a lot of urine.  The kidney is still certainly functioning well enough to produce plenty of urine.

They are also hoping the excess fluid has been the cause of his low oxygen levels (he still requires oxygen blowing near his face to help keep his oxygen levels up).  The excess fluid may have accumulated in his lungs.

We are all doing ok-- Brody has been watching alot of movies-- luckily we have out PS3 here and the wifi here is fast enough for us to stream both netflix and VUDU movies-- I was able to hook up the PS3 to the TV here via an HDMI and and a little bit of video gaming have helped him not be bored.  Trish and I both are feeling more rested.  We both managed to get a decent amount of sleep last night.

I think that is it for now--

I want to thank once again everyone that has stepped up to help us out with everything.

Bill

Brody got to have a drink and a popsicle today.... He is still in the process of recovering from surgery but things are still headed in the right direction

Brody is continuing to improve.  

Today his NG tube was capped and he is on a clear liquids diet now.  He had an orange popsicle and a tiny bit of grape juice today.    As thirsty as he was in ICU,  I would have thought he would have been extra excited about this news, but he didn't really care too much about drinking today.

The ostomy care nurse came by today to train us on Brody's ostomy care and to change the bag.   I was little overwhelmed and pretty grossed out.   I managed to stay back where Brody couldn't see my face.   I didn't want him to be worried.   It all made me very nauseous.   I am sure we can handle it and will adjust to things but it may take me awhile to not fee sick in the process.  Brody saw his stoma for the first time during the training too.  He freaked out a bit.   His words were,  "Oh my God!!!  What is THAT!!!"   His stoma is really large and protruding a lot right now.   We explained calmly what it is and that it will get smaller.  It didn't take him too long to calm down.  

I talked with Dr. Cripe today via phone.   He explained,  he plans to have Brody complete PET CT and MRI again on Thursday.   These will all be compared against scans since Brody first entered the HSV trial.  He will also have the radiologist compare  CT scans done while Brody was on cyclophosphamide and topotecan regimen.   The goal is to determine which is better at slowing Brody's tumor growth.   He is also having the surgery team review the scans he has done on Thursday this week to determine if surgery to debulk the tumor could be a possibility.  Dr.  Cripe is also reviewing possible chemo options to add to the cyclophosphamide and topotecan regimen. 

I contacted Genekey too to see if they could provide any treatment ideas  based on their results.  Dr. Leherer will be calling me tomorrow to discuss these via phone.  

Brody was in good humor today considering how little sleep he got last night.   His oxygen alarm and his pain were keeping him up most the night. He enjoyed a visit from his brothers, Papaw,  and Uncle Dan today.   He is greatly looking forward to seeing them again sometime tomorrow.

Well I better get some sleep. Hopefully Brody has a much more restful night tonight too.  

Brody is out of PICU

Brody is out of PICU.   He was moved to the heme/onc floor this afternoon.  
He is off his sedation meds and acting like Brody again.   It's nice to see that smile and hear that laugh again.  

He is still needing a little oxygen blowing by his face while he has been sleeping.   He has been keeping up with his breathing exercises this afternoon and getting better with them each hour.  

He still is not allowed to eat or drink but overall is not complaining too much about it.   The fluids and TPN have lessened those drives,  I think.   He seems reasonably comfortable regarding hunger and thirst.

Brody is still facing a lot of belly pain as he heals from the surgery.   The pain team is working to keep adjusting Brody's meds to control his pain though.  

Brody got up and sat in a chair today and watched SpongeBob for awhile.    He was a real trooper getting out of bed and walking to the chair.   That first time getting out of bed after surgery is painful.   He knew he had to do it though and just did it.   He is one tough boy.  

Since Brody is not able to eat or drink,   he also has not been able to take his hemp oil.   When Brody started the hemp oil,  we noticed a big improvement in his neuropathy pain.   It used to hurt him to touch his head very lightly or to rub or touch his back.   It had gotten to the point you couldn't hug him without hurting him.   Yesterday,  I noticed his head is getting  very sensitive again.   Hopefully it doesn't get much worse before we are able to start him back on the hemp oil.  

Brody is adjusting to the idea of having a colostomy.   He is handling it pretty well.   He certainly doesn't like seeing it (or smelling it when it's emptied) but he remembers how much pain he was in with the obstruction and knows this had to be done.   Tomorrow we will be learning how to care for the colostomy.  

Brody is continuing to improve

Brody has been continuing to improve.   He is  now off if the bipap and not using cpap anymore either. He is needing a little oxygen while sleeping  but is fine when awake. 

Now that he is off the breathing masks,  he can be taken off of the Precedex which has been helping to keep him sedated while on the masks.   Precedex provides pain relief too though.  His belly pain has been worse overnight so before stopping the Precedex,  his nurse is waiting on the pain team to see him again and increase his basal amount of morphine. Also,  if he will be off the sedation meds,  we want to give control of his morphine button for pain control back to Brody rather than his nurse.  The nurse has been controlling these button pushes while be has been in ICU.

Brody's thirst has not been nearly as intense yesterday nor overnight.   He is starting to complain of hunger now too though.  Hopefully his gastrointestinal tract starts moving along again soon so Brody will be able to eat and drink again soon.

Brody's spirits are much better too.   He is glad to be off the breathing masks and he can see/feel he is moving towards getting better.  

Brody is still in the ICU tonight but he is making progress

Brody is still in the ICU tonight.  He is still battling increased heart rate and still needs the BIPAP to help him breathe.

His blood pressure is much better today and has been normal for most of the day.    It improved fairly quickly after he got the hydralazine (a vasodilator) last night.   He isn't expected to need additional doses of the hydralazine at this point.   

The ICU team is still working towards correcting Brody's fluid imbalances.  His heart rate has improved since increasing fluids.  He still has a lot of edema and his albumin is low.  The increased fluids is helping to increase his blood volume.  He will start getting albumin soon too to help draw fluids back into the blood vessels where it is needed and help to improve the edema too.  It's normal to have a lot of edema following a major surgery.  They are being careful to not give too much fluids and potentially worsen the edema but giving enough to help increase the blood volume enough to keep him stable.  The amount of fluid he is losing through his NG tube is being tracked in eight hour time periods.  Then fluid is replaced over the next eight hour time period at an amount of half of the amount he is losing through the NG tube.  He also receives additional fluids on top of this that would normally be given to maintain euvolemia in patients not able to eat or drink.  (Euvolemia = normal blood volume).

The low albumin is also an indicator that Brody is malnourished.  He has not been able to eat or drink for about a week now and has been through major surgery.  He was started on a TPN today to provide him nutrition via IV.  

Brody had an X-Ray this morning that showed he has a partial collapsed lung (atelectasis).  We aren't sure what caused this but it is a common complication after surgery.  The atelectasis is part of the reason he is needing the BIPAP to help him breathe.   The pain medications have also contributed to his difficulty breathing.  Today he has been weaned off of his basal morphine.  He is only taking it in small amounts as needed now.  He is finding it easier to breathe since doing this.  He does not have pain anymore when just lying in bed.  He takes some morphine when he needs to move etc.  Now that his breathing is better and his blood volumes have improved, he is just being started on a drug called Precedex (dexmedetomidine).  This medication helps to keep him sedated and calm without depressing his respiratory function.  It's hoped that with this medication he will be more tolerant to switching to CPAP rather than BIPAP.  The CPAP provides a continuous pressure whereas the BIPAP delivers different pressures for exahale and inhale.  Brody was tried on CPAP earlier today.  He was very intolerant of it and caused him a lot of anxiety feeling that continuous pressure.   Since the CPAP machine provides continuous pressure, he would need to work harder on exhales.  It's hoped that with the CPAP if he works harder on the exhale that he will open his lungs back up.  Hopefully, with this medication on board Brody's second attempt to start on the CPAP will go better. 

Brody's number one concern is EXTREME thirst.  Unfortunately, he is not able to eat or drink yet.  He is allowed to have a mouth swab every 2 hours.  This is nowhere frequent enough for Brody nor close to thirst quenching for him.  Almost every word he has spoken today is a request for something to drink.  We keep letting him know that we want to let him have a drink but cannot do so.  We let him know the reasons why and that he is getting better and will get to drink normally again.  He calms down each time eventually.  But then a few minutes later the whole requests and explanations as to why he can't drink start all over again.  He is exhausted.  He keeps falling asleep but repeatedly keeps waking back-up every few minutes asking for something to drink.  It's heartbreaking to not be able to give him something.  He is far more frustrated and angry about the not being able to drink nor even swab his mouth when needed than anything else. 

It's been a long and difficult day.  We are getting through recovery from the surgery one step at a time but are certainly looking forward to being through this ordeal.  We are thankful that he is improving and making progress on being able to transition out of the ICU. 

Brody is being carefully monitored in the PICU tonight

Brody has just got all settled in for the night in the pediatric intensive care unit (PICU) following his surgery today.   His blood pressure and heart rate have been running high.   He is on a Bi-PAP to help him breathe.   Pain control is a big concern for the night too.   All of these need closely monitored hence the reason he is in PICU tonight.  

Bill and I are taking shifts for the night so that one of us is here by his side all night.  

With the large mask over his face it's hard to hear and understand what he wants to tell us.   He is weak and his voice is really soft.   He is not talking very clearly either.   I have been asking him a lot of yes or no questions that he is able to shake his head yes or no to finally arrive at what he wants to tell me.  

He has a PCA for breakthrough pain and also a basal amount of pain medication running too.   The pain team evaluates him frequently for pain control.  They are doing an excellent job of managing pain concerns.  

Brody still does not seem to be putting out as much urine as he should be.   He looks puffy to me and his groin is swollen again.   His ICU doc explained that when tissues are inflammed they draw fluid into them.   He may have a high amount of fluid in his tissues and low vascular fluids.   This may be the reason for high heart rate,  high blood pressure,  and low urine output.   He is getting ready to be started on hydralazine (a vasodilator) to lower his blood pressure.   The ICU team is working to get Brody's fluid balance corrected.   

Brody is out of surgery and it went well

Brody just finished surgery.   The surgeon says it went well and he was able to do a colostomy rather than an ileostomy.   This is very good news.   The colon is responsible for reabsorbing water back into the body.   Without the stool being able to travel through the colon there would be much more fluid loss.   With an ileostomy it is difficult to keep hydrated.  

Brody is in recovery right now and we are waiting to go see him.  He is being transferred to PICU because his oxygen saturation was already a little low before the surgery.   The concern is that with increased pain the oxygen saturation could drop further.  

Brody will be getting an ileostomy

We just talked to the surgeon.   Brody will be getting an ileostomy tomorrow.   

The priority for now is to take care of the bowel obstruction.   It's possible Brody may still have some sort of tumor debulking surgery in the future and he may possibly be able to have the ileostomy reversed.  

The surgeon we spoke with today was not  willing to do surgery to debulk later on day the road without knowing there was a chemo regimen capable of "shrinking the tumor" to give to Brody after the surgery.   This is the same mindset we have heard from other surgeons too.  If we actually were to find such a regimen we wouldn't even be considering very risky surgery.    We would be considering ourselves lucky to find such an option and stick with it.   We wouldn't risk a 50% chance of losing Brody in surgery if we found a chemo that was shrinking his tumor.  

I would be considering the risky surgery to remove the tumor if we had a chemo regimen that could at least significantly slow and keep growth pretty slow of the tumor.   And,  I wouldn't do this until we were at the point that if the tumor were to grow,  it would risk Brody's life/he likely would not suurvive much longer without it.   I wouldn't want to debulk the tumor while Brody's  bowel is distended like it is either.  

For now,  we need to just think more one step at a time.   The surgeon felt that the ileostomy was the safest next step and the highest priority concern.   We agree with this.  

The questions as to other surgical procedures to remove the tumor will need to wait until after this surgery.  

Better and more clear scans can be done after he has recovered from the ileostomy.   These will help guide us to the next step more clearly.  

The expected recovery time is 3 to 7 days for the ileostomy.   Brody is expected to be on the longer end of this range due to his previous surgeries in the abdomen and his large tumor.  

Brody has been comfortable for most of the day and the pain has been well controlled.  

Brody's CT scan today showed he has a large bowel obstruction, the tumor has gotten significantly larger and is also now in lymph nodes

Brody had a very long and painful day on Tuesday which fortunately improved dramatically Tuesday night.   His pain was finally much more controlled.  He even had some moments of zero pain.   I was starting to get optimistic he was making a recovery.      He was still having good bowel sounds,  he was swallowing capsules with small amounts of water and keeping it down,  and passing some gas.   These were all good signs. 

Unfortunately Wednesday morning it was obvious he wasn't really getting better when looking at his belly.   The distention was obviously worse.   He was still needing his morphine often. He was finally feeling better due to all the medications but he certainly wasn't well or in reality getting better.   A CT scan was ordered.   

Unfortunately,  the CT scan results are beyond devastating.   It showed he has a near complete bowel obstruction caused by his tumor.   Also the tumor is significantly larger and now in his lymph nodes.   Previous scans did not show lymph node involvement.  

Normally a large bowel obstruction requires emergent surgery to correct the situation to avoid bowel perforation.   The pediatric surgery team in Toledo was ready and willing to perform surgery to place a colostomy.  They were not willing to consider surgery to debulk the tumor which is actually causing the problem.  Maybe a colostomy would not be necessary if at least part of the tumor could be removed.   Also,  the tumor is very close to infringing upon many blood vessels supplying Brody's one and only right kidney and it's putting pressure on his kidney and ureter.   If the tumor cannot be removed away from the kidney,  we could soon lose Brody to kidney failure.  The tumor is putting great pressure on many,  many areas and slowly just crushing everything.  We don't have a magical chemo or treatment option that will reverse/shrink the tumor nor prevent it from getting larger.   If surgery cannot be done to remove the tumor or at least debulk as much as possible,  then we are down to extremely limited time left with Brody.  

We opted not to proceed yet with the colostomy procedure in Toledo and instead transfered to Nationwide Children's in Columbus via ambulance today.   The surgery team at Nationwide Children's have reviewed Brody's case before and previously felt that surgery to remove the tumor was not impossible.   It's doable but extremely risky with odds of about 50:50 for Brody to even survive the surgery.   This risk was obviously why we previously decided not to proceed with surgery and opted to enter the HSV trial instead.   Also,  the surgeons were not willing to actually perform the surgery at that time but stated that they would consider performing the surgery as a very last resort.  If we were left with no other reasonable options then surgery may be possible.   I think we have now arrived at this point. 

I don't know if surgery is still even doable anymore.  The tumor has gotten larger,   his bowel is distended,  he is very weak from all he has been through these past few days.   These all complicate surgery to remove the tumor even more.  

We are now at Nationwide Children's.   Brody had an NG tube placed to help prevent further distention.   He is not allowed anything by mouth.    His medications are keeping him comfortable here right now.  

We will be meeting with both the oncology team and surgery team at Nationwide Children's tomorrow to discuss the options and decide finally the next steps.   He  will soon be having surgery of some sort but I do not know exactly what type yet.   It could be surgery to place a colostomy,  followed  by later surgery to remove tumor,  followed by later surgery to reverse colostomy.   Or simply place colostomy.   Or debulk tumor.   Or some other option.   We will have to wait and see tomorrow.   For now,  Brody is comfortably sleeping and his belly distention is remaining stable.  

A Poem I Wrote Today....Inspired By My Precious Brody...One Brave, Strong, and Inspiring Boy Who Brings Such Joy to My Life

LIFE IS SWEET, EVEN WHEN IT'S "BAD"

 

I try to fight back my tears

As you bravely fight the pain

I stand in awe

As you triumph; you are the victor

A pain comes in waves so intense and extreme

You push through and are all SMILES in between

 

I ask why, why, why, Cancer!

You accept it and live life's Joy, Joy, Joy!

I grieve for the what could have been

You enjoy the here and now

My heart aches as I watch you endure a very bad day

On which, you shoot grins that feel my heart with utter joy

 

As I hope and pray for memories I fear may not be made

You make me laugh and smile at the memories made

Just when I think I can bear no more ugliness in this world

You teach me to see the beauty in life

Through this journey together I have never felt such pain

But also, have never experienced such Joy

 

Before you, I did not truly live

But now I SEE

Life is so short

And very sweet

I will not waste precious time

On angry thoughts, on things I cannot change

 

I will be in the present, in the here and now

I will enjoy and truly live

Brody Will Be Staying at Toledo Hospital for Now

Brody will be staying in Toledo Hospital for now.  He is still experiencing fairly frequent belly aches and is very tired.  Traveling for 3 hours to Nationwide Children's is not in his best interests at this time.  

Since Brody is participating in a phase 1 trial and it's possible he may be experiencing side effects from the HSV injection in this trial, normally it would be best for him to be managed at the hospital conducting the trial (Nationwide Children's).  It's not possible to move Brody without causing him further discomfort though.  So, the doctors here and at Nationwide Children's are all communicating and working together to treat Brody and he is staying in Toledo for now.  

We are hoping that Brody is experiencing a temporary side effect that will resolve on it's own with a little time (rather than the tumor continuing to grow despite the recent HSV injection).  If Brody's symptoms do not resolve in the next day or two, then he will have a CT scan performed at Toledo this week which will be compared to the CT scan performed last week in Columbus.  If the tumor has gotten bigger again in just the last week, then we will likely discontinue the trial and move on to another treatment option instead.  If the symptoms resolve, then he will receive scans next week (these are already scheduled as part of the trial...he gets many scans and tests quite frequently while in the trial).  The scan results next week would determine steps moving forward in that case.  

Brody's pain is being managed okay with morphine, bently, and zofran for now.  He does still have some breakthrough episodes but he is certainly feeling much better than yesterday.  He does have bowel sounds and has been able to intake some fluids now without getting sick.  The pediatric surgeons at Toledo Hospital evaluated him too.  At this point, no gastro- surgery is needed.  Thank goodness!  The morphine is making him very sleepy and he is generally wore out from all he has been through.  Needless to say, he is spending most of today sleeping.  

If we were to discontinue the trial, we are currently considering having Brody go back on the chemo regimen he was on prior to starting the HSV trial.  He was taking cyclophosphamide and topetecan.  These medications appeared to be at least preventing the tumor from getting larger.  Prior to starting the HSV trial, his kidney appeared to no longer be handling the chemo anymore and his blood counts were not able to rebound as quickly as before (kidney function can limit the ability of him to recover too).  At the time, we did not think his stent was no longer enough.  He was still urinating and he did not seem to be holding a lot of extra fluids other than in his groin area. He has compromised blood flow in this area and fluids tend to accumulate there naturally whenever sitting or laying in several positions.  It was thought that it was more of a gravity dependent edema worsened by the tumor blocking normal blood flow through this area.  Now that Brody has gotten a nephrostomy tube again though it is apparent that Brody had a lot more fluid retention than we thought.  He has lost a lot of weight since getting the nephrostomy tube and the swelling in his groin has resolved.  The stent was partially still working and the onset of it all was so gradual we didn't realize the extent of the fluid buildup and the inability of the kidney to drain all the urine without the nephrostomy tube.  His problems with swelling in the groin started back in Jan 2014.  We now think that is when his stent first started to  not be enough on it's own.  In mid-Feb 2014, Brody was hospitalized with the ileus and partial bowel obstruction (like he is experiencing now).  He was started on the cyclophosphamide and topetecan at that time.  The tumor was growing and getting bigger prior to starting that regimen.  Scans after starting that regimen showed the tumor to remain stable.  But due to kidney troubles we were not able to continue with the regimen and switched to the HSV trial.  Now with the nephrostomy tube in place and the realization that the stent was not enough at a time much earlier than we thought, I think the cyclophosphamide and topetecan regimen deserve another chance.  Molecular profiling of Brody's biopsy sample indicate that a drug called Ponatinib may be effective against Brody's cancer.  This medication or a similar medication may be a possibility to add on to the cyclophosphamide and topotecan.  Also, there are a few medications I mentioned in previous blog that may help fight his tumor by increasing oxidative stress.  This may be able to be added as well.  There are certainly possibilities to consider adding to the cyclophosphamide and topotecan.  There is still much to consider with this though.  Adding other medications can make the toxicity of the entire regimen greater and would be harder for him to recover between rounds.  If he can't tolerate and recover quickly enough between rounds we could lose more ground battling the tumor than just sticking with cyclophosphamide and topetecan combo.  Also, the potential side effects list is certainly long with adding some of these medications.  

I am hoping and praying Brody improves in the next couple days and the HSV ends up surprising us and working wonders.  But, we are thinking and planning possible next steps just in case.  

Thanks everyone for continuing to keep us in your prayers.  

Brody is Sleeping Peacefully Finally After a Very Difficult and Painful Day

Brody started having belly pains late last night and was unable to eat or drink since last night.   He did manage to sleep for a few hours between about 4am until 6:30am and then again from 7:30am until about noon.   He kept having belly pain that would come and go.   It wasn't real severe at first but by late afternoon it was extremely painful and accompanied by lots of nausea and vomiting.   

Brody has been admitted to Toledo Hospital for tonight.   They are trying to keep him comfortable.   He had an Xray of his abdomen.  It appears that he may have a colonic ileus again and/or a partial bowel obstruction (his tumor is mechanically blocking the normal peristalsis of his GI tract and he may also have nerve damage that is limiting normal gut motility.   Brody previously had success with using dicyclomine (Bentyl) to help this condition.   Bentyl is a GI antispasmodic.   It is an anticholinergic agent which generally could actually aggravate and worsen an ileus since it slows gut motility.   For some reason it helped Brody before though.   It calmed the spasms and his gut was able to be more effective although maybe slower.   Brody is getting Bentyl by IM injection tonight to see if it helps this time too.   The pain he has been in has been awful and I do not know how he has been able to bear it.   He would rank it as 10+ on a 1 to 10 scale.   The suffering was just too much.   His physician ordered morphine for him to give him some instant relief and help him get through the night.   Morphine can worsen an ileus too (slows the gut) so the plan is to only use it if he is in severe pain again.   At least,  it works very quickly.   He has no pain after his doses of morphine so far.   Thank goodness!  

As stated previously,  Brody's tumor has been growing rapidly again the last 2 weeks.   It grew 1cm in just 2 weeks in the area near his kidney.   This area was injected with the HSV virus on Friday.   I am hoping this injection soon stops the growth in this area.   I am not sure if the tumor growing in this area is what has caused Brody's belly problems today.   Certainly is a possibility.   It's a possibility the tumor may be growing elsewhere.   Or,  maybe there is swelling from the injection that brought this on.   Maybe the tumor is growing in the spinal column again and causing more nerve damage resulting in the ileus.   Maybe a side effect from the HSV virus is gastrointestinal irritation and inflammation causing an ileus.   There was a report of a previous recipient having a GI perforation that may have been caused or related to the HSV virus injection.   We really don't have answers right now.   I am unsure of what tomorrow will bring and very nervous and worried about many of the possibilities.   For now,  I am very thankful Brody is sleeping peacefully though.  

Please keep us in your prayers and keep your fingers crossed!