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.