January 30th

It’s been another quiet week. Lots of conversations, a couple ideas, a treatment plan being discussed – and home an ultimate goal. Addie will begin vincristine this week. It is a medication that other patients with this disease have used with sirolimus to try to stop the “flare up”. The “flare up” being the cyst in Addie’s back that appears to be growing as well as what appears to be responsible for the excess lymphatic fluid that is penetrating her left shoulder, arm, and chest cavity. We must stop the “flare up” in order to decrease the fluid so that the skin can heal. Once the skin is healed enough the doctors will put in the plurx catheter. ¬†Addie can travel home with a plurx catheter, and we should be able to manage her medications and care from home with the help of CMC and possible a home health care program.

The vincristine can show its effectiveness within a few weeks up to a few months. Most of Addie’s care will be through medications at this point – so being home is reasonable, however travel is not possible without the plurx catheter – so patience again is required.

Addie is holding strong. Yes she is definitely tired of this situation, but she continues to not be in pain, and seems to be able to keep herself positive for the most part. Over the next three weeks, I will be traveling home to be with the family. Addie has two very close friends who will be coming here to be with her. She is excited that they are coming, and ready for a bit of a change. I am excited to go spend time with the rest of the family and to get a break from the hospital.

I will continue to keep you all updated – and hope to see Addie’s situation moving in the right direction soon. ¬†Michal