Wednesday, December 21, 2011

Dear God? (Update of 12/21/11)


Courtesy D. Horrocks

Many of you have been exceedingly kind to pass word along regarding my close friend's family adoption journey. I am now free to share that when they adopted 2 boys and a little girl from Liberia, the little girl arrived in a life threatening battle with Tuberculosis. As you know, that disease affects the lungs. However, if not treated appropriately, it can migrate to the bones. In this case, it had done so and caused serious malformation of her spinal column.

 
The damage was so severe that her spinal cord should have been severed before she arrived to live with her US family. She had major surgery within the first few months in the states. The surgery required that she be operated on from prone and supine positions during a very, very long day. She was in the hospital for most of 2 months, was in a wheelchair, and wore a 'halo' while her spine fused in place. 
 
She survived to thrive and has met all her developmental milestones. She has been in a wedding. She's made trips to Maine with her family where they play in the lake and tromp around in the woods. She is as irrepressible as her life journey indicates. 
 
Courtesy D. Horrocks
I have permission to share an edited note which I received today regarding her current medical challenge. If you have been kind enough to share her story via Facebook, email, etc, I ask that you would again do so when you see this update. In this Christmas season, may you all be blessed for your ongoing prayers for her family of 8 as they face another monumental challenge. Here is my little friend's story in her mom's own words:


We are trusting that God will move through those that call his name great. We are trusting that he will come to our aid for our strength is growing weak. Almost three weeks ago, our daughter came to my bedroom and showed me a large mass on her neck. We called our doctor who said bring her in Monday morning. When he saw the lump, he told me thought it may be her Tuberculosis coming back. 
 
He ordered a CT scan for the following day which ruled out Lymphoma but not Tuberculosis. We then went to a specialist who also thought it was re-emerging TB. He sent us to a Pediatric Infectious Disease specialist for a two hour appointment. More bloodwork and xrays followed with several diagnoses in mind to rule out. 

Courtesy D. Horrocks
They decided to start treating for TB while we awaiting a formal diagnosis to get ahead of things if it was, in fact, TB. We breathed a sigh of relief and made plans to alter our family routines till she responded to treatment. 

Thursday of that week, we got the wonderful word that her chest xray was clear with NO signs of TB in her lungs. That news meant that, even if she was in early stage active TB, she was NOT contagious. This welcome news meant she could go out in public and masks were not needed for our family or the general public when around her. 
 
Courtesy D. Horrocks
However, her lump started getting bigger over last weekend. She noticed it. I noticed it. My heart was thudding in my stomach through Saturday and Sunday.

We took a family outing to celebrate the news that she was not contagious. Despite the rainy weather, we sloshed around at Happy Cow farm. We bought eggnog, drank chocolate milk, and arrived home at 4PM. Dr. Johnson called me at 4:05PM. 
 
The blood work that has been approved since 2005 to test for TB came back positive. He said they were shocked as they had been more inclined to think she had Cat Scratch Fever vs TB. There is an outside chance that these results represent a false positive. While the doctors are hopeful, they also know we are probably dealing with a re-emergence of TB. 
 
He was meeting with the pediatric surgeons just after our call to consult on a plan for our little angel. They have two options:
  1. They will surgically remove the node for a biopsy which will render a definitive answer. If it's TB, he thinks they can get it all out at that time of the biopsy.
  2. He described a more intricate biopsy using radiation. Frankly, I missed most of his explanation in this regard because of the sum total of his news. The lump is in a bad place. They hate to operate on it. Among other concerns, the surgery could affect her facial nerves. Her beautiful face. Her beautiful, grace filled smile.
Courtesy D. Horrocks
I asked him if this would be before the end of the year. "Oh yes." he said.

I asked him if he meant THIS week. "Oh yes." he said.

Surgery would be overnight. Biopsy option would be all day, but outpatient.

SHE IS NOT CONTAGIOUS.

I know this fact is hard to understand. I asked him for reassurance twice. Twice he said, “No, no, no. Her Xray was clear. NO TB IN HER LUNGS. She is NOT contagious to your family or anyone outside your family.”

Please trust us. Please trust the doctors. Please do not shun us. We need the body of Christ now more than ever. I am seriously drained. I cry in the bathtub so the kids can't see. I am scared. This child has been through so much medically. We knew this was a tough road when we adopted her. It's not about us or our finances, time, etc....It's about me looking into her eyes once again and telling her she needs to be cut open – once more. It's about adding one more scar to the many scars that litter her body already.

Courtesy D. Horrocks
So, God. It's me Denise. I'm waiting here for you. You love me, yes. You love my little girl, yes. You created her. You knew we – weak, broken, leaky, ugly vessels that we are – would be her parents. I am, in the words of my Alabama friend, going to be banging on your gates for you to restore my little cup of cocoa. She loves you. She loves me. I'm waiting here for you. With my hands, lifted high.

For it's you, we adore............ and we sing hallelu...hallelujah. Waiting here for you.

2 comments:

  1. Denise, I will be praying for you and your sweet beautiful little girl...May God's arms of love carry ya'll through this time...May the doctor's hands be directed by the God of this universe...Oh may, you feel our Heavenly Father's presence at this time and have a beautiful Christmas.

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  2. Dear sweet Denise.... My heart is heavy for you, reading your story!!! You & your beautiful family are in my thoughts & prayers as you face another ugly obstacle in the life of this precious child... I praise the Lord that your family has adopted her & treatment is being made available for her!!! I can not imagine the quality of life that she would have had, otherwise!!! Father God... We know that You have a wonderful plan for her life!!! Your Word tells us that "He who begin a good work in us will see it to completion." We stand on Your Word & receive it in the Mighty Name of JESUS... Our Lord & our Savior!!! Amen & Amen ♥♥♥ We thank You that You hear & answer the prayers of Your children & we will be sure to give You "all" Glory ~ Honor ~ Praise!!! HALLELUJAH!!! MERRY CHRISTMAS to you & your family, Denise ~~~ ((((((BIG HUGS)))))) God bless you!!! ♥

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