10 March, 2014

Quick Photo

Robert pulling a load of gifts for the treasure box at CHOA into the hospital early this morning.

09 March, 2014

The First Phase

This initial phase of the new protocol has served as an unwelcome reintroduction to several old foes; side effects that are hard to see Robert deal with. Only this time, they are emboldened by even heavier dosages than the "high risk" protocol that came before.

The steroids that have always made him emotional and unbearable have been more than tripled in dose.  They have also caused him to swell to over twice his normal size.  The weekly spinal taps have his back very sore, with occasional headaches.  He has been so weak, that at times he needs help getting into the car. 

The active cancer cells that were found in the spine have to be eradicated before moving on to the next phase of the protocol.  They should've been gone after a couple weeks, but have been hanging on longer than desired.  Finally it appears that we have a clear spinal draw from last week, one more from this week will confirm it allowing us to proceed to the next types of chemo or treatment.  Once this happens, this means that the chems in his system are at such a level that they are preventing the body from producing further cancer cells.  This is cellular remission.  Remission should take place a week to a month after treatment starts.  If you were around for a 2010 post I talked about remission a bit.  TV, movies,& general misuse have seemed to distort the definition of remission.  It does not mean that someone is cured or "safe". Simply put for our case, it means that the cells in the body are reacting to the cancer therapies, and Cancer Cells are not detected. It means that they have succeeded into turning his body into such a toxic environment that cancer is presently unable to live there. If treatment is stopped, the cancer comes right back.  This is why blood cancer protocols are so long. For kids with blood cancer, remission is the starting line.

The next phase will have more hospital admissions, and perhaps some therapies that are new to us. That will be starting within the next couple of weeks.

All in all Robert is still a pretty happy guy most of the time. I'm very proud of him, as he had the idea to work to fill the "treasure box" at the Aflac Cancer Clinic at CHOA.  After a rough day, kids can go and pick a small item from the treasure box.  Its amazing how much they look forward to it, and how much it lifts their spirits.  The box had been a little lean for a while when Robert had this idea. His mom pretty much took over from there and Kasie will be hauling a car load of small gifts for the hospital to use to restock the treasure box.  I'm very proud of both of them.  Thanks to all who pitched in towards their effort.