Home Sweet Home

We visited Dr. Sugarbaker on Friday.   Trent was doing pretty well that day.  All the doctors were pretty surprised by how good Trent looked.  They kept saying that he is a real fighter and they were surprised he was still alive.  He really was soooo close.  Scary.

Dr. Sugarbaker wants us to do the chemo for a few rounds and then come back.  He wants to see us in three months for surgery.  He was very confident in the outcome and that is what we needed to hear. I stood up and told him that we were going to go forward with the chemo therapy fully expecting good results and we WOULD be back to see him soon.  He jumped up and shook my hand and said, "You are right, I expect that too."

I asked him about photodynamic therapy, which is what we would have gotten in Philadelphia.  He said he doesn't do it and would never recommend it to anyone.  Apparently the ventricles of the heart also have a very high uptake of the photo sensitizing drug they hope the tumors absorb.  Then when the light hits the ventricles, they have had some explode, and patients have died.  Good to know...

While we were waiting in the exam room I started snooping around on the computer that had Trent's medical records on it.  I located the first x-ray Trent had just after he nearly died, and the x-ray from the morning he left the hospital.  What a dramatic difference!

Before

See how cloudy this is?  That is all the fluid that was filling the pericardium and causing pleural effusions.  The dark spots are the only parts of his lungs that were clear.

After

Now look how much more darkness there is.  WAY BETTER!  Unfortunately you can also see just how big the tumor is.  The big white mass just under the port on the right side of this x-ray is the tumor.  Yuck.

While I was snooping around and snapping pictures, one of the doctors came in and asked if I could record video on my camera.  Then he scrolled down through the CT scan while I filmed it.

This is from the neck down.  It is like you are seeing a picture of each slice of Trent's body starting from his neck to his abdomen.  You can see the little black spots appear, those are the tops of his lungs.  As the scan goes further down the black spots get larger and larger until the left lung (right side of the movie) turns all white.  That is the tumor.  Again, YUCK!

We left feeling pretty good despite the ugly pictures.  We headed home early the next morning.  Only the two older kids knew we were coming home.  When we walked in the door the three little ones were shocked!  We got tons of hugs and kisses.  Yeah, we missed that, a lot!  Jonathan told me that he didn't know where I was and he had been looking all over for me.  There is nothing like Home Sweet Home.   

For the last few days we have been eating up every second of family time we can get.  We took the kids out to a movie and to see the lights on Saturday night.  Since then, Trent has been pretty much bed ridden.  He made it to church on Sunday but he was pretty sick.  For the last few weeks Trent has really struggled with hallucinations, excessive sweating, either being too hot or too cold, some swelling, tachycardia (rapid heartbeat), etc.  I have been trying to handle each symptom as it comes up.  I got fed up with that and decided there has to be a reason for it and it can't all be cancer.  I think I have zeroed in on one medication that is causing all the problems.  I called Katie but haven't heard back from her yet.  I have already begun weaning Trent off this medication.  If I am wrong I can easily add it back in but I really think it is the medication that is the culprit.  

Since we have been home we have received such a huge outpouring of love and support.  We are amazed that so many people care and have been so giving.  We are overwhelmed and humbled, again.  It just doesn't stop and we are so grateful!  To all of you who have been on this journey with us, THANK YOU!  The prayers, the kind words, the encouragement, and support have all been so wonderful.  We are truly grateful.