handle

Some people will say "I could never do what you're doing".  And sometimes, I have written in my journal "I can't handle what I have, and especially nothing more".  But really, I can and I am. I'm doing it. Sometimes one step in front of the other. Because there is no other choice, because I want to be able to handle it. I sincerely believe God doesn't give us more than we can handle.  Last night I packed Siri's lunch, got her backpack ready. Got the bag ready to take to the hospital with Ruby. Washed Annie's hair so it wouldn't be so greasy when Liz came to be with her today :)

 this is "the bag" I always take to her appts

And often I reply to people "I couldn't do what you're doing". And its true.

Its easy to share each other's joy, but harder to share the hard stuff. I am thankful for so many of you that are sharing all of it with us.

I was very prepared to hear that the tumors have grown today. I felt calm. As we were chatting with Dr Holly, as we usually do for a bit before getting the details, she kind of interrupted and said "I have good news, the tumors are stable".  I covered my mouth. I was not expecting that. Miracles.

Imagine your child could die anytime, likely soon, but they don't. And you keep getting more time with them. But its unexplained. That is what is called a miracle and I don't know why, but Ruby's life is a miracle and our time together as a family here on earth has become so valuable to me.

We are wondering if the immunotherapy drug, Opdivo (Nivolumab) she tried last April/May did help...so the plan is try again, do 3 rounds, which is 6 doses. Its a little over an hour-long infusion every 2 weeks.

* update: Good thing I wrote the above as it's already a good reminder for me: later today I was at the pediatrician with Siri for a sore throat and he let me know Annie's lungs, yet again, failed the oxygen test. Washer needs a part that has to be ordered ...one step in front of the other...