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.