Things That Make Me Crazy:

1. Cancer
2. People (not doctors) who THINK they know what causes cancer.
3. People (not doctors) who THINK they know what can cure cancer.
4. Rats
5. Sour candy
6. The extreme anxiety that I (and I think sometimes Claire) feel before every clinic appointment waiting to see what her blood counts are, or anytime Claire has any sort of ache, pain, or extra tiredness. Because normal people don't have aches, pains, or tiredness, right?
8. Orange and chocolate together
9. Did I mention rats?
10. Cancer

Every night I kneel down next to my bed and I pray. And, despite all of the pain and sorrow in the world, what occupies most of my time praying is my children. Claire sometimes, but not always, gets the lion's share. But what I really pray for in connection to her is peace. And trust. Peace that she is in God's hands, and trust that whatever that includes will be alright. There is a beautiful hymn written by a Utah poet who used to live in my parents' neighborhood, Emma Lou Thayne, that captures my feelings.
"Where, when my aching grows,
 Where, when I languish,
 Where, in my need to know,
 where can I run?
 Where is the quiet hand
 to calm my anguish?
 Who, who can understand?
 He, only One."

Today Claire and I made the drive down to Utah County to go to a new student orientation at the Utah Valley University Culinary Arts Institute. Claire was so excited! We mentioned it yesterday at clinic to the oncology psychologist, and he looked at me and said, "So, what are you going to do while Claire is at her orientation?" I took this as a hint that maybe I needed to step back a little bit and let her have some independence. (Deep breath) I didn't exactly wait in the car, (she does still need some help carrying things since she was using her walker) but I did sit in the back of the classroom and let her do her thing. (And for the record, I was not the only parent there.) She even raised her hand to ask questions, and she used her own money to pay for the required uniforms. Not unusual for a 19 year old, I know, but pretty exciting for a 19 year old whose social life was ripped away from her in no uncertain terms. And scary for me, because I am so afraid that it will get ripped from her again. But it was amazing to see her take a little bit of control over her life. The things we take for granted, right?

            Of course I was the weird mom who had to take a picture.

 After orientation we had to stop by The Galilee Grill for falafel and baba ganoush. Delish. And yes, those beautiful eyebrows were painted on. Hers haven't quite grown back yet, haha.

        A little shopping trip on a rainy day last week.

     You may be asking yourself if our outings always include food. Yes. Yes they do.

        Spending some quality time with her dynasplints.

Day +127, if anyone is interested

So, here we are, spending the day in clinic. It started out pretty routine. Blood draw, check up. They stopped her remaining immunosuppressant, which means one less drug. They (her medical team) had already taken her off of one anti nausea med, and suggested she taper another just to see how her body reacts. Then the IV team came in to place an IV (no central line anymore) so she could receive her monthly infusion of Pentamidine, a prophylactic, or preventative, antibiotic. After about 25 minutes she started getting a rash and red streaking up the skin where the vein that was being used was and feeling some tightness in her throat. I told a nurse, and within seconds there were 7 medical people in our small exam room taking vitals, stopping the infusion, asking questions. Claire was given Benadryl, which totally knocks her out. They have decided to place another IV in a (hopefully) bigger vein, slow down the rate of infusion, and continue giving the drug. We won't be getting out of here anytime soon.

Yeah, the IV team just came in. It took them two tries to get the bigger IV into the bigger vein. Ouch. Poor Claire lost it. After everything she's been through, which is A LOT, getting poked for an IV is still the very worst for her. I told one of our nurses that every so often we get a reminder that all of this, even the things that seem routine, is still very serious business. I'll just add one more notch to my anxiety belt, I guess.

Aside from today, aargh, things have been ok. I think. No, they really have been. I'm seeing bits of improvement in Claire's walking. She has had a few small adventures like seeing the musical at her old high school and feeding some penguins at the aquarium. David and I went to NYC for 6 days (it was amazing!) and Claire and the other kids did great without us. I did get one funny text, though. I had given the girls chore assignments so the house wouldn't actually fall apart while we were gone. The second day we were away Claire sent this: "Well, it turns out you need  to be able to walk and be strong enough to push a vacuum in order to vacuum, and I discovered today that I can do neither. So I had to pass off the job." Points for trying, right?

One bright spot today is that her blood counts look pretty darn good.
WBC- 4.3
Hct- 35.1
Hgl- 11.3
Plts- 119
ANC- 2.2
And, even though our children's hospital says that it doesn't offer soda to patients anymore, you can still find Coke in the oncology refrigerator. Because sometimes, when you are a kid battling cancer, the rules just need to be broken.