New Years Eve- Day -11

Well, we made it! We got to the hospital at 7 this morning (not terribly bright, but very early). Tessa was fortunate to get the first slot for her central line placement, that meant that she didn't have to fast all day. Small victories. The line placement is a surgical procedure so there lots of people involved (including one very uppity nurse who almost got her butt handed to her). She came out of it okay, but you can see where there was a first attempt that has bled slowly over the day. So she has her line and this bloody ooze under this big clear bandage (tegaderm) on her chest. Nice. Because of the Indomethacin she was taking her platelets don't work properly so she is at a higher risk of bleeding. She's also been put on a heparin drip which is a preventative medication for a side effect of transplant called veno-occlusive disease. The heparin further inhibits her clotting ability, so she will be at even higher risk of bleeding. I asked the doctor where she would be bleeding from. He explained that bleeding was most likely to occur in the intestine, which is prone to irritation, or from microscopic holes in her skin. Um, what?

Anyway, she's also been taken off pretty much all her meds. Made a switch from prednisone (steroid) to hydrocortisone (about 40% of the previous dose, pretty drastic reduction), hoping the bone pain doesn't come roaring down the pike.

On the bright side her room is decorated in a manner worthy of a princess...pink canopy over the bed, princess decals, glow in the dark stars. It's pretty fabulous! We have our own tv and bathroom. Unfortunately the nurse just informed us that the bathroom is for Tessa only. We have to use the bathroom in the community kitchen. We are also not allowed to use the bath or shower unless housekeeping cleans it immediately after, so we'll have to let them know ahead of time when we want to bath or find someplace else. Uhhhhh... You know I live here now right?

Well, hope you are all out celebrating the coming of the New Year in style. Tessa and I are celebrating with a few episodes of Arthur and hospital bedding. Poor Casey is celebrating all alone at his parent's house where the heat has been off all day. Poor guy.

Happy New Year!

Tis' the Season...

Well, it's official! Tessa has a bone marrow donor, and we'll be checking in to the hospital at the end of the month, either the 30th or 31st. She'll get a central line placed in her chest and start chemo pretty much right away. After 4ish days of intense chemo she'll get a break for a couple of days and then her transplant (also known as her re-birthday in the bone marrow world) will be on the 9th or 10th. The transplant itself is easy, just a blood transfusion. It's what comes after that can be hairy.

In preparation for the big day Tessa is having to get a ton of baseline testing so that they can track any effects that the chemo may have on her. In the last week she has had her first dentist appointment, a trip to the audiologist, repeat xrays, half her body's supply of blood drawn, and a 2 1/2 hour intelligence test with a psychologist today. We have the weekend to rest here in Los Altos at the fabulous Noni and Papa's. Monday she's having another bone marrow aspiration and Tuesday a CT. She has to be sedated for both of those, so that's going to be a rough couple of days. Wednesday we sign the consent forms with the bone marrow transplant team and hit the road for a final week at home.

All that aside we have been very grateful for having had so much time at home this last month. Everyday has mostly been about making Tessa smile. She met Santa for the first time, and got to ride the merry-go-round over and over!

She loves spending time with her family more than anything in the world. As a matter of fact, the only 2 things she can think of to ask Santa for is a pink Christmas dress and a picture of her "whole family". She has had a blast hanging out with her grandparents, aunties and uncles, and of course her beloved cousins!

Tessa is feeling mostly good. No big issues. Some tummy pain that requires morphine and tylenol (she is currently taking 9 medications). Grumpy moods (thank you steroids). But mostly lots of insomnia. Thankfully she's taking naps again, cuz mama needs her sleep!

(here I actually passed out on the couch while watching Casey and Tessa playing!)

On a more thoughtful note, I have become quietly accepting about what is happening. This time at home has been a calm before the storm, and I have managed to reach a place of peace. Of course if you ask me how I'm doing in another week, I may have a very different response. To preface anything that I might go on to say here, cancer is not a gift or a blessing. Anyone who says so is crazy or just plain stupid. That being said, I have had time to reflect on many things lately. I am so grateful for my husband who, though he drives me crazy at times (as those we love always do), is an amazing man. He is such a source of joy for Tessa that I find myself grinning foolishly at them when they are together. He is also incredibly generous and supportive. Working his tail off to keep everything running smoothly on all fronts of our lives. 

I am graced with having the most amazing family, this includes both Stamatergasts and Roos'. The way both mine and Casey's family have supported us has saved our lives and sanity. The generosity, joyfulness and love that pours from these people takes my breath away. 

The community of friends and friends of friends that has stepped up to help us carry this astounds me. I have never known such acts of selflessness. Everything from the gifts for Tessa to girls' nights out have helped me to get here without self-combusting. 

And Tessa. She is my world now more than ever. We spend virtually every waking moment together, and I love it. There was a time when the stay at home and have no life outside of your child schtick was getting really old. But with the future so uncertain every moment has become precious. She is my joy. I have asked myself the question, "would I do it all over again?" At first the idea gave me pause, but I quickly came to realize that it was because I didn't know if I could be so selfish. Would I put Tessa through all of this again? I don't know. Would I walk this road again? In a heartbeat. Being her mother, sharing her life has been the most fulfilling experience I have ever had. 

I hope you all have an opportunity this holiday season to be surrounded by people that you love. Don't miss the chance to tell them how much they have meant to you. Merry Christmas!!!