Monday, November 14, 2011

Sunday

I have heard people say before that they wish their kids could stay a certain age forever. Not me. I have long held dreams of Mal trying on a tutu at her first dance recital, and hosting a living room full of giggling girls at a sleepover. I have walked through how I will tease her the first time I catch her flirting with a boy, and how I will comfort her when she falls for the wrong one. I feel a pit in my stomach imagining her first turn behind the wheel of a car, and a swelling of joy foreseeing me walk her down the aisle.



That is all selfish, I know. Mal has her own dreams, and one day I hope she will get to see them come true. For tonight, my dreams, those of her mother, brother, friends, relatives and so many other kind strangers - they don't matter. Jesus has a plan for Mal. I am at peace with that. I pray that His plan is in line with mine, but again, I am being selfish. More than anything, I pray for the strength to accept the Lord's plan for Mal, whatever that may mean 24 hours from now.


Mal had as adventurous of a day as a kid tethered to a bed by four IVs and one brain drain tube can have. She was allowed by her daytime nurse to sleep on her belly for comfort, and in return she had a bowel movement that shot up her back. For those of you that do know Malorie, when I tell you this you will cringe - it got on Godi and Elmo. There was a two hour period where she had to be without her blankets and stuffed monsters. Thankfully, Jenna again came to our rescue and got the secret replacement Godi (the exact same blanket that she carries around, only sent from her cousin Kaileb who outgrew his) from home while the real ones were being washed.


We have had to give Mal several doses of morphine today, as her head has really been bothering her. She finally, for the first time, told us that her head hurt today. We have been trying for over 7 weeks now to find out what was hurting her. Also, her night nurse, who we have been extremely blessed by for three straight nights (the same ones that let us hold Mal last night) got Malorie a "Big Girl Bed" to sleep in tonight. Mal was excited to get out of the crib, and the bed will allow for Rachel and I to take turns nuzzling up next to her all night. We obviously have to be weary of the lines going into her, but I think we will be mindful.


I got to meet with the Neurosurgeon leading the team performing Mal's surgery today. Dr. Smyth is a great man with a very accomplished record, and I have the utmost faith in his abilities. He told me that he is fairly confident that Mal's tumor is an Ependymoma. These types of tumors are like plastic, and they can shape shift into any loose space in the brain and spinal column. He believes this because of the location and the way it is growing in her. They are sometimes benign and sometimes malignant. He also told me that the top half of the tumor is floating in fluid, so it should be relatively easy to get out. However, the bottom half is up against the base of her brain, precariously positioned against a bed of nerves. This half of the tumor may come out really easily, or it may be attached tightly to the nerves. Mal's long term neurological status largely depends on how tightly nested the tumor is in there. However, because of the rate of ependymomas that are malignant, he will likely err on the side of aggression in removing the tumor, meaning he will forsake long term impairment in order to remove the entire tumor. At the end of the surgery, Mal's skull will be put back together using titanium screws and plates that will remain with her for life. If the tumor is malignant, she likely will not go to radiation therapy for nine more months, as the brain does a significant amount of development between the ages of two and three, and we wouldn't want to stunt that growth. If this is the case she will get frequent MRIs between now and then to ensure the tumor is not returning.


I want to say that I am at peace. I can't. I already wrote it, but it is a lie. I am scared and sad and feel beaten down. But then at times my spirits raise and I know it will be all right. However, there are countless other parents going through tough situations like this. There are numerous families here in the PICU that are fighting for their babies. We can't all win the sick kid lotto and have our dreams come true. I will pray for them to be strong tonight too. If they can be strong, so can Rachel and I.


Mal will be OK.

10 comments:

  1. bill you are the strongest person i know and best big brother anyone could ask for I'll never forget all the things you have done for me teaching me about God and how to pray i love you and your family with all my heart and believe that everything will work out but in the end Gods will is going to prevail it takes a real man to sit down and write these events well there taking place i love you guys so much and i am praying for Malorie God is with you

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  2. This is going to be a long sleepless night for Pop, and an even longer day to come. I wish I could lift this burden from you two kids, and make it go away. I think I speak for Bob and Judy as well as Mom and I when I say any one of us would trade places with Mal or any one of our children in this or any time of illness or trouble in a New York minuet if we could. But the Lord just doesn't work that way. Mom and I love Rachel and you son and all our babes, And all our prayers are with you. I've never been one to ask the Lord for much, and I've most likely prayed more in the last 72 hours than ever in my life. Remember anything you kids need we will be there for you. Please keep me posted thru the day I'll check my phone every few minuets, and if you need to talk I'll call back ASAP. All my love and preyers Dad

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  3. As the sun comes up here in GA, my mind automatically went to sweet Mal -- a beautiful little girl I've never met -- and my prayers started. For all of you. Prayers for Mal to come through surgery like a champ. Prayers for you two and your son to find peace and comfort. And prayers for the doctors' hands that they are able to get everything as easily as possible. Will be awaiting an update from Nic or from here.
    ~jana

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  4. Sent over here from Jana's Thinking Place. My first son was hospitalized for the majority of his first two years because of a rare genetic defect. I have walked in your shoes and know that these moments fail to have words of description. You and your family will be in my prayers this Monday.

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  5. i've been selfishly holding out on reading this one until i got your godson to school. you are in all of our thoughts and prayers. we love you.

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  6. Lots of love and support to you guys right now. I'm not awake enough for poignant words, but am sincerely sending good thoughts into the universe on your behalf.

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  7. I don't know you but I am praying hard for your sweet baby girl and the rest of your family. Your family has been on my mind since I read Nic's first post about what you are going through. Anxiously waiting to hear that she has come out of surgery well. Sending love and internet {(HUGS)} your way. ~ Kelley

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  8. Been thinking of you guys all morning. I keep checking Nic's facebook for updates. Lots of love to your little girl.

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  9. I don't know you, but I have three little girls myself and I just can't imagine... I'll be thinking about your little family today and sending prayers.

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  10. I hope your dreams come true too.

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