Etoposide Finished

Joseph finished his two weeks of Etoposide without any side effects other than fatigue. We're glad to be done with it. Now we're waiting two more weeks before we go back to Memphis for a bunch of scans and begin the Avastin/CPT-11 treatment. Again, the new treatment will be given IV every two weeks in Memphis, so we'll be taking lots of trips to St. Jude in the future.

Joseph's facial symptoms have gotten quite worse over the past week and now the left side of his face is totally paralyzed. He always had some mild loss of function on that side since the surgery in December, and he lost all sensation on that side; but now nothing is moving and it distorts his speech, interferes with simple tasks like drinking water, and wipes half of his beautiful smile away. It probably is harder for us to watch than it is for him, but today he was frustrated and sad about not being able to move his mouth to drink a juice box. He is amazing though, how accepting he is of his limitations and how quickly he adjusts to each new challenge. He has started coughing slightly after drinking which is probably due to loss of sensation in his mouth and uncoordinated swallowing. We found that if he tilts his head down he can swallow without coughing and now he does it everytime he drinks without thinking about it. All of this is probably due to the residual tumor around his brainstem that must be growing or infiltrating further. The worst part is that there isn't really anything we can do except to hope that the new treatment will kill and shrink the tumor and restore function.

We're still weaning him off steroids, and he should be completely done in three days. So far he has done great with the wean and only has occasional headaches. He has had more energy and desires to play and run (with assistance) which is good to see.

It has been unbelievably hard to watch him lose function. Our focus is on making him as comfortable as possible with the changes and trying to explain to him what's happening as best as we can. He understands more than we give him credit for. We have had to start giving Holly "medicine" when Joseph gets his; she gets a syringe full of water. The other day Joseph was getting medicine and Holly asked for her medicine. Joseph said, "No Holly, I have to take medicine because I have a boo-boo in my head. Right Daddy?" It was so sad to hear that, but at the same time it was encouraging to realize that he knows what's going on. He knows that all of his symptoms are because of the tumor.

Please continue to pray that the steroid wean would be successful, that the new treatment would be effective and have few side-effects, that Joseph would continue to be strong and accepting of his circumstances, that we would have the strength to endure through this, and for a miracle.

** I added a link to a daily online devotional by Charles Spurgeon on the right of the screen. Today's reading is amazing and so fitting.