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?