Update

I realize that it's been a long time since I last updated the blog and that there are many of you out there who are wondering what is going on with Tessa. She has been feeling pretty well lately, and we've been fortunate enough to be able to be home for most of the last three weeks. We have had our weekly appointments up at Stanford, but have been motivated enough to try and make the trip up and back in a day.

The current situation is this... Tessa is on a plethora of medications. We are slowly weaning her off the methadone, but it is a long process to avoid major withdrawal. We have been working with the docs to figure out how to get Tessa off the Prednisone. There are lots of nasty side effects to long term use of steroids, and it is not something she should be taking much of going into a transplant (more on that in a minute). So, we are attempting to reduce the amount of steroids she's taking, but very slowly because there will be a point at which the pain comes back if we reduce the dose too much. In an effort to circumvent this we have increased her dose of Indomethacin (an anti-inflammatory) to three times a day, and she has started a chemo drug called 6MP. My pharmaceutical skills are increasing exponentially.

The other piece is the transplant. We met with the transplant team last week. It was a pretty intense meeting, all about the risks of the procedure and the process. Not uplifting. Our beloved Dr. Krysta has asked us to talk to the transplant team at UCSF as well. When Casey asked why she told us that "If she doesn't make it, I want you to feel like you made an informed decision." Wow. When I asked what would happen if Tessa didn't get the transplant Krysta said, "She will die".

So, here we are. The process of getting everything ready for transplant will take 6-8 weeks. Merry Christmas Tessa.

I want to thank all of our friends for their support. Colby, Star, Maren, Sarah, and Corrin-Thank you for the food and cleaning!!!!! Paul and Deb, thank you for your generous gift, the book is awesome! Thank you to Jennifer Hinson for continuing to send all those little gifts you send to Tessa. They have come in so handy as pick-me-ups after doctor visits. Thank you to everyone for the thoughts and support you all give us.

On a positive note, Tessa has had a great time playing her friends and celebrating Halloween!