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!