Wednesday, July 2, 2014

Update, July 2 2014

Tomorrow we go in for an echocardiogram...I think, if not it is a heart scan of some manner. They gave one to Grace before the chemobombing began and now they'll do one to compare to see if any damage was done. She'll also be starting the chemo part of her "re-induction" phase- it's the same chemo that caused several nights of vomiting the first time she had it. She is also on steroids which, as before, is causing appetite swings, mood swings, energy level swings, joint pain and heartburn. That's tough stuff for a four-year old.

Being back at home is great. We sleep through the nights without her blood pressure and temperature being checked four times, without 9:00pm medicines that wake up a girl who just finally fell asleep, without machines beeping and alarming through the night, without the cleaning lady emptying the trash at 10:00pm, and without "LaDonna" shutting our door loudly like it was part of her job description at 1:00am.

Being a family again has been great too. Grace and Luke have a fluctuating relationship right now, mostly it's based on how Grace is feeling. When she's feeling well they play and she goes out of her way to take care of him. When she's not feeling well, he's trying to hug her and she's trying to pry him off while screaming. And she oscillates from well to not well several times a day, mostly depending on when her heartburn meds are working vs. when they wear off.

We've been home two weeks and we've been at the hospital three times already, four if you count our interview with CBS which we did in the CHLA playroom. Every time we go back the kids freak out. Both of them. Luke runs after Grace like he's going to lose her and if she so much turns a corner where he can't see her, he panics. They're so worried we're staying there again. I'm praying tomorrow will be different. I've had several days to warn them that we'll be back for just a visit and that we'll be home for dinner, so I'm hoping tomorrow will be a less stressful visit.

Overall being home has felt like I've had two feet in two worlds. One world is the "simple life" of laundry and play dates and little pleasures. Except that Grace has been feeling so crummy this last week that there hasn't been much fun. The other world is leukemia and that involves not letting my guard down, keeping busy so I don't worry, being strong. Only being "strong" at home is keeping me from entering into the little pleasures when the opportunities do arrive. Needless to say, I'm about as mixed us as Gracie is from her steroids.

We continue to trust God. We know that He has a plan, though we don't see it yet. We do know that Grace has five more months of "active" treatment that will include 1-2 hospital visits a week, more chemo (though no more bombing) and hospital overnight stays will only happen when she gets fevers. And then we go into maintenance for a year after that, which is still fuzzy in my understanding, but it means treatment, but less of it.

Grace will be six years old when she finishes chemo, and if all goes well. It's definitely a marathon, but the good news for us is that when we are weak, God is still strong.

Isaiah 40: 27

Why do you complain, Jacob?
    Why do you say, Israel,
“My way is hidden from the Lord;
    my cause is disregarded by my God”?
28 Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
29 He gives strength to the weary
    and increases the power of the weak.
30 Even youths grow tired and weary,
    and young men stumble and fall;
31 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

1 comment:

  1. a beautiful thing! Many prayers for your darling girl, to restore her to health and the family to happiness!