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.