Saturday, May 3, 2014

Hospital Update, Day 19

Today started with a magical visit from Rapunzel. A friend of my cousin dressed up and spent an hour reading, coloring and laughing about Pascal with Gracie. She absolutely loved it. She's feeling much better today, her counts are the highest they've been in weeks. She's slowly coming off the morphine. This morning was too fast and it felt too uncomfortable for her, so they'll be trying again slowly tonight. She's allowed to eat, but doesn't have much of an appetite as of yet, only a few bites of spaghetti.

We're hoping to be home early next week. The exact date depends on her counts being high enough (which shouldn't be a problem), being off the morphine and also eating again. I know we'll get there but I won't get my hopes up for going home until they say that day, "we're discharging you today."

When we get home we'll have a home-nurse to help with some follow up medicines. And then we'll be back to driving to CHLA 1-3 times a week again for clinic visits, blood transfusions and chemo. Although I don't anticipate another week of "chemobombing," the fight is far from over.  Chemo will still continue in heavy doses for the next four to five months, and then maintenance chemo for up to two years.

We should find out next week if Grace will need a bone marrow transplant. We know already that her brother is not a match, and if you've not registered in the national bone marrow registry, please consider it. It only takes them swabbing your mouth to find out if you can help. And if you are able to donate (to Grace or anyone else) it's a bone marrow aspiration (think big needle into your hip bone), done under anesthesia. Grace gets a bone marrow aspiration monthly. You might only get a bone marrow aspiration once in your lifetime, but it could save someone else's life.

Today I walked Grace's brother around the floor in his stroller until he fell asleep for his nap. As I walked past each door I prayed for the child inside. There are thirty-two children in our Leukemia wing. Statistically, six of those children will not win their fight with cancer. When I walk the floor and see the infants, toddlers, children and teens in their rooms, it's hard. I wonder how God can let so many children suffer.

I was thinking as I was praying. And I felt like God reminded me that He is there with every child, in every room. He reminded me of the Beatitudes:

Matthew 5:3-12

New Living Translation (NLT)
“God blesses those who are poor and realize their need for him,
    for the Kingdom of Heaven is theirs.
God blesses those who mourn,
    for they will be comforted...
God blesses those whose hearts are pure,
    for they will see God...

Some people spend their whole lives looking for God. And here He is, at the children's hospital where we are all poor in spirit, we are mourning. He is with the children, whose hearts are pure. He is here. And in the grand scheme of life, what is more valuable than finding where God dwells?

It made me realize that my view on God letting children suffer is incomplete. These same children have a special place in God's heart. He is here with them, even if they don't know it. And if God is here, spending time with these children, then really, this is a place full of life. Because God is eternal life.

Pain and suffering and death might not be so abhorred if we realize that these are also the dwelling places of God. It's not because God has a macabre plan to make us suffer. But because this world of ours is so very broken, and we are so very broken, God stays especially close to us so that we can endure it. He dwells in our decay and pain, He immerses himself in our suffering and sorrow. He does it so that we won't be alone. A perfect God taking our pain on Himself, so that He, God, can be close to us... mere mortals.

I realized that this hospital is not a place of dying. It is a place where Heaven meets Earth in the realest way imaginable.

1 comment:

  1. Beautiful post, Melissa. Thank you for sharing your heart - in all its suffering and uncertainty and confusion and clarity and peace. It is encouraging to know how God is speaking to you during this time, changing your heart and your mind to know and understand him even a little bit more than you did before.

    It is nice to see Grace smile. Following you these past few weeks, I know those smiles have been few and far between. What a lovely little big thing your cousin's friend did for you and for Grace.

    Love & prayers, Mackenzie