Sunday, April 17, 2011

Mary-Claire

Proverbs 3:5-6 "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight."

This is extreme long but so worth the read. My Sunday school class was talking about trusting in the Lord. Our ways are not His ways. As we try to grasp why things happen in life, tears are shed. I left class in hopes to draw closer to my Lord today while sitting by the ball field. I quickly check may email for any last minute updates from Coach and notice a caringbridge. Mary-Claire? It's been a long time since I've seen that name. Should I read it or delete it, I think? They are so sad, I have to honestly admit my heart. But I decided to read it anyway. I am so blessed by this update that I want to share it with you.

Isaiah 55:8-9 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."




March 20th, when spring was only a few hours old, I began my Eternal Life... the reason we live.... living to grow character, to choose Him and to be the Body of Christ.
Be strong and learn. Show everyone that you chose Him. Be His hands when you touch His children, let your feet walk where He sends you, let your lips speak the words He inspires.
Go.

Background Story
Mary-Claire had headaches for a while at the end of the summer of 2007. In August 2007, her third birthday party got lost in a blur of headaches and morning vomiting. Friday, September 21st, emergency MRI. This was our first MRI and as it was scheduled at the last minute, we never got the call about how to prepare. MC was not NPO. She tried to lay real still for the MRI, but needed sedation. A nurse recommended we try a CAT scan, since we were there, and obviously this kid was in discomfort. The CAT scan showed a mass. We were hopeful for a diagnosis of Astrocytoma, but this mass was carefully centered on the cerebellum, a hallmark of Medulloblastoma. Her ventricles were enlarged from increased intracranial pressure. The tumor was blocking passage and absorption of CSF, the fluid that surrounds the brain and spine. It was urgent to relieve that pressure. Mom and Dad accompanied a grumpy agitated pre-schooler to the PICU. Once Mary-Claire received some pain medication, she turned back in to her charming, gregarious self. She disappeared behind a flurry of activity and medications to intubate. We were consoled that among the pain meds she was receiving, was Versed, a medication that would block her memories of these dark days. Sunday, September 23rd - Neurosurgeons take Mary-Claire for surgery through the Posterior Fossa to get to the tumor and remove it. It was good that this was Sunday. We didn't have to share the waiting room with other families. It was hours. Nine. Good news, all the tumor was resected. Bad news, Medulloblastoma with leptomeningeal disease. No other tumors, per se, but a coating of cancer cells on every available surface of the brain and spine. Aggressive. Not good. Mary-Claire waking, a glimpse of our girl. She mouths, "take me home." She falls back to sleep. When she awakes next, she has Posterior Fossa Syndrome or Cerebellar Mutism. She can't speak, her eyes won't process, paralysis radiates from the center of her body. Her legs sure can thrash. She can't roll her head at all. Mommy and Daddy begin caring for her like baby, all over again. Hide the doctors and nurses, she's terrified of them. Radiation is the only treatment that can tame this beast. Radiation that can steal her intellect, her height and her health. At three years is when the brain stops growing so rapidly. Rapid growth is what the treatments target. The treatments won't know the difference between cancer cells and rapidly multiplying brain cells of another brilliant Barmada kid. We'll try chemo to buy a little time. We'll keep working her through PFS/CM. Somewhere in the blur meals start to arrive. They arrive for 3 weeks. Chris' good friend Tracey spearheads Operation Neglect Prevention. Honestly, Chris hadn't thought about feeding people for a while. Good thing Tracey noticed. Lots of other balls start to drop. Mountains of laundry, dog dragging her empty bowls around, tumbleweeds of cat fur....Somewhere in the blur the laundry starts to disappear. Steve and Rebecca had arrived. Their children offer a distraction to Mary-Claire's sibs. October 6, Mary-Claire comes home. Doctors are recommending inpatient rehab situation. We know that the best place for a kid to heal is back among the familiar. October 9, Mediport insertion. Neat gadet. Hide a port under the skin. Skin is the best protection against infection. Emergence Dysphoria. It has a name. Common in kids. Explains a lot. After every exposure to anesthesia, Mary-Claire looks so uncomfortable. As her paralysis improves, we get a better look at just how uncomfortable. October 9, Chemo starts. Three days plus another for hydration. Still paralyzed and mute. October 29, Chemo round 2. November 10, walking with assistance, weak and imbalanced. November 17, talking, finally!! Improving fast! Mom and Dad have missed that gorgeous voice. November 20, MRI LP, Emergence Dysphoria from Versed. LP under general anesthesia now. November 26, Chemo round 3 interrupted. Bad news from LP. More cells. Lots of cells. Move immediately to radiation. Huge Thanksgiving dinner, lots of family! December 3, Rads to whole brain and spine, followed by boost to tumor bed. 6 weeks total, every week day. Music therapy takes our mind off the waiting. December 19, clear LP. Christmas sleepover... Tayta and Jido and Bella. Gifts with Gab Rick Michael and MomMom. January 16, End of Rads Party at Chuck e Cheese's. Jumping, running, talking and tattling! Dad's been taking me to Children's every day. Maybe I'll take him to the beach. February 24, Beach Vacation YAY! March 1, relapse. It's time. Time to say good-bye. I have met so many friends and family members during this journey. I know them. They know me. I will take a part of them to heaven with me. March 20, I meet my Heavenly Father, and my PopPop and his father. PopPop's mom joins us near the end of 2009, her spirit freed from decline and dementia.

CaringBride Update received today, April 17, 2011


Spring has arrived.
It's time to play outside.
The waterfall is begging to flow.
What a wonderful reminder of the sunny glow of warm friendships, the babble of children's chatter, the refreshing spring of faith...

It was during this Easter season that Mary-Claire lost her biref battle with cancer but won her place in heaven.

While there are still days when we can't breathe for the longing we feel to hold her, listen to her thoughts and watch her strong body play in the sunshine, we are always comforted. We can feel that Mary-Claire is nearby. We can feel the presence of God. We are not alone.

I'd like to tell you a little story.
I was telling a new friend about Mary-Claire and the wonder of friendship we discovered during her last months. I described the dinners, the visits, the calls, the cards, the gifts, the relics and holy water. I described the waterfall and the art that surrounds it.

I mentioned how sweet was the red glass heart that appeared one day. Just the kind of thing a little girl would love.

Just after this discussion I was sorting some used toys for work. They were all small things, legos, GI joes, erasers, marbles... 20 pounds of things smaller than a matchbox car.

In the very bottom of the bin were two tiny red glass hearts. The same exact dimensions as the heart in the waterfall, but pocket sized. One for mom and one for dad.

I carry mine with me as a reminder that although I have a longing for my loved ones in Heaven, they long for me too.

This week Christ accepts his destiny. Through his death, Christ saved mankind from bondage to sin, and He destroyed the hold that death has on all of us.
It is His Resurrection that gives us the promise of new life, both in this world and the next.

During this most important week for followers of Christ, I wish you the sense of comfort and appreciation for the sacrifice Christ made when he opened his arms on the cross. And I hope you get the chance to feel, as I occasionally do, that He is waiting and longing for you.

Blessings to you for Easter.

Christina

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