People

I will admit that growing up and well into my 20's I was a fearful and angry soul; mistrustful of people and their motives. Given that fact, the way that people have stepped forward to show support and love for our family has been shocking for me. I am continually stunned at how people reach out, rally together and go out of their way to show us kindness.

There have been so many instances of generosity that to try and list them here would inevitably result in my forgetting someone. However, this most recent act of generosity stunned me in the organization and pulling together of women in my community that it must have taken. The other day an amazing mother named Lindsay texted me and asked if she could bring over the "25 Days of Christmas" for Tessa. I didn't know what this meant, and kind of had this image of one of those advent calendars from Trader Joe's, you know...the ones with a door for each day of December leading to Christmas with a little chocolate behind each one. So when she and my good friend Colby rang the door last night and walked in bearing two big baskets filled with gifts I was flabbergasted! Thank you to the women who have shown such kindness to my little girl. Her face when she saw those gifts was priceless!

On another note, we had a really nice Thanksgiving here at home. My mom, dad, brother, sister and Auntie Julie (another incredibly generous being) and Uncle John came to celebrate with us. Everyone pulled together to make the day really low key and enjoyable. Tessa had a really good time spending the days with her Nana and Poppy and her Auntie Jenny and Uncle Mattie.

She's been in good spirits. Christmas is in full swing in our house and we are enjoying the crafts/activities that go along with the holiday.

We hit a wall with the weaning of the steroids and the pain returned leaving Tessa unable to walk for a couple of days. We went back up and she's back on her feet. We have almost weaned completely off of the methadone, which is great. Her tummy pain seems to be flaring back up, not sure why. We are headed back up to Los Altos this afternoon. We have appointments for x-rays, labs and a meeting with the transplant team tomorrow. We'll spend the weekend with family and get to make gingerbread houses with the cousins on Sunday. Back into the doctor on Monday for some appointments and then hopefully returning that afternoon.

Hope everyone had a great Thanksgiving. We have much to be grateful for!

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!