Shunt revision surgery scheduled for 10/25

"His overflowing love that extends itself through my broken body will last forever. And ever...Love matters. It never ends. A lot of what I have given my life to will end at my last breath- but love, it won’t...Extending love is something you will never regret. Never."—Kara Tippetts

As our family enters this season of gratitude and hope we remember each of you by name. Your love has been life saving currency to us. Your sacrifices to give and most of all your prayers and encouragement carried us here to our new home in the sun. I've struggled to find real words as my body and brain slowly heal. Thank you for your reminders we are held even now. One of the holiday traditions I love most is #pentopaper. I'd hoped to mail greetings with our new address early on. Many of you are asking now so I am sharing it here:

The Snyders
2697 East Scenic Overlook Place
Oro Valley, AZ 85739

Thank you for your faithful prayers. I continue to be more well in many ways, but I've had a sudden return of my physical and neuropsych symptoms from my AE/PANDAS. Our healthcare situation is tenuous. The girls and I will be flying back to Ohio Wednesday, 11/28, so I can receive my chemo infusion Thursday. Even in this discouragement we continue to be overwhelmed with the Grace of abundance having all we need at all times.

Our Hope Remains. 

Dan, Monica, Delaney and Danica

"Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying,'Thus far the LORD has helped us.'" -I Samuel 7:12
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The story below *** details the beginning of this gofundme campaign.  Since early 2016 YOUR GREAT LOVE has provided access to four major brain and spine surgeries with very specialized neurosurgeons for Danica and I.  For me there was a life changing VP brain shunt in April, 2016 at UVA, a huge spinal fusion of C1-T1 in October, 2016 in Maryland, and a VP shunt revision in April, 2017 at UVA.  In November of last year Danica had a dangerous hardware removal and refusion of her skull to C4.  I also received chemotherapy treatments every six weeks during this time, and we made many trips back and forth to our far away doctors for scans and follow-ups.  Without your giving we never could have accessed this level of care.  Just the travel and hotels, especially post surgery, compounded by the deposits and high deductibles would have made these surgeries impossible.  

We suffer gratitude.  We offer praise.  We never once have taken YOUR SACRIFICES for granted.

During my trip to Maryland week before last, when I saw for myself on my MRI that my spinal cord has retethered and understood this meant there was a real reason for my increasing pain and disability of particularly my legs and feet, I also had to step into a room with a financial person to look at an existing balance with my nerosurgeon and the new deposit for this November surgery.  Why is this the hardest part?  I just couldn't bear to ask one more time.  Dan couldn't bear for us to be receiving one more time.

I went with a few thousand dollars gifted from others to try and "settle" the past amount for about half of what I owed.  Instead they suggested I put it towards the new deposit that must be paid for the upcoming surgery by October 24th and then setting up a payment plan after this surgery for the remaining.  

My counselor encouraged me to "ask."  My sister suggested she start a new campaign because this one looked like our need was met.  I've prayed.  We've prayed.  We are transparent before you.  This is our need.  God is faithful.  He will provide.  We will give Him the glory.  

My November 8th surgery with take 3-4 hours.  I will be in the hospital at least three days lying flat to prevent any spinal fluid leaks.  I must remain in the area in a hotel for 7-10 days after discharge before a post-op appointment and permission to return home.  Because he is removing a vertebrae to detether the spinal cord at a higher level than before and then replacing and fusing it with bone marrow harvested from my hip I will have to keep my spine completely straight for at least a month.  This means bed rest with a brace.  Dan plans to take off work the first week and be with me during surgery and the days in the hospital, but I will need a caregiver once I'm released to the hotel and more help when I return home.  Please pray for this.  Please pray for my family, especially our Danica.  She is having periods of great anxiety about my surgery and me being gone.  Delaney is more resilient but longing for an extended period of time for our family to just "be."  Dan is a saint.  He has been working seven days a week lately and comes home to do all he can to keep me from stretching and injuring my cord any worse.  He is tired.  He does each next thing while loving the girls and I so well.  Please pray for my heart and for my body.  I want to quit.  I am so weary of the fight.

Please pray for me as I try to navigate even out of network coverage from my insurance company.  I've received two denials for special MRIs done in Maryland.  I am submitting letters today showing the massive out of pocket expenses I've incurred, particularly the deposits but also the travel and hotels, since 2011.  These are in addition to in network deductibles, our large out of network deductibles and out of pocket maximum which for our family is $24,500!  This is just an example of how we will never pay all our bills.  Your love to us helps us see these specialized doctors who have committed their lives to those of us with EDS.  

Thank you.  We are amazed how God brings the ones who have walked this very long road with us since the beginning and completely new love to be enough...more than enough for each next challenge.  Thank you for praying and sharing our story.  

Our Hope Remains.

***My heart's cry for 2016 was for one year without having surgery and without "asking" for anything. Just one year.  I pleaded with God to write something new for our family. His answer is clear. Be faithful here. Endure here. Surrender here. I'm doing something for your good and my glory. Trust me, child.

The money you all helped us raise this spring which you see in the total so far allowed for me to travel to UVA in Charlottesville, Virginia and have a third failed lumbar shunt removed and a ventricular shunt placed near my brain.  It has given me the most relief from headaches and pressure I can remember and restoration of my sight and hearing on the right side. YOUR LOVE did this.  Thank you.

Your donations have also helped us make three big trips to Cincinnati with our Danica with lots of imaging.  The first was over spring break, before my shunt surgery.  We found out her hardware and one level of her fusion is broken.  In July we traveled back to scan again and saw the hardware is moving and closer to her brain which is dangerous.  We took another trip in August to meet the new ortho sugeon and neurosurgeon assigned to Danica's difficult case and discuss the necessary surgery.  We left conflicted about their lack of experience and vague scope of surgery.  At the very same time I pursued an opinion from a very respected neurosurgeon who was just moving to Johns Hopkins.  His expertise in the cranial cervical junction is exactly what Danica's rare case needs.  After reviewing all her images and entire history and past op reports he called to let me know he was willing to take her case.  We feel very sure God has led us to this difficult surgical decision even thought it means navigating an entirely new hospital system, networks of doctors and care, not to mention a new city.  Danica's surgery is scheduled for Wednesday, November 30th, at Johns Hopkins Medical Center in Baltimore, Maryland.  It will involve several days of pre-op testing including an invasive myelogram, a long 6+ hour neurosurgery including taking part of her little rib to make the best fusion material possible, a few days in the ICU and a week after in the hospital.  We may need to stay close for post-op or have to travel back and forth.  

Less than three weeks ago, on October 19th in Lanham, Maryland, I had an unplanned major spinal surgery that involved removal of hardware from last summer's lower cervical fusion, aspiration of marrow from my hip to make new fusion material and a rod being placed from my C2 all the way to my T1 to save my spinal cord which was under pressure from vertebrae at several levels.  I am struggling with basic recovery.  I cannot drive and do not know when or if this will happen.  I am healing and the relief from the constant spinal cord pressure is very real.  

Your quick love met needs for a deposit and out of pocket costs for a very sudden surgery.  We were down to the last night when I was packing and a friend called with Hilton and Marriott points to share and help cover the several thousand dollars of hotel costs.   God always provides a ram in the thicket!  

Over the next week I will be adding information here about our specific needs and how you can pray and help.  I have a trusted friend who has offered to help coordinate.  As always you can give here and know the money goes directly to travel and medical needs.  

We suffer gratitude for your faithful love and prayers for us these long years.  "For we do not want you to be ignorant, brethren, of our trouble which came to us: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us, you also helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through many." II Corinthians 1:8-11

"YOU helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through MANY."

Your prayers. Your gifts. Your thanks to God for all the good He's done and requests for the good He is sure to accomplish . . . You are working out God's deliverance in our lives.

Please.  
We inhale as we ask in faith.
Thank you.  
Two silly words that could never emote the depths of our gratitude as we exhale praise.  

Our Hope Remains.

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Donations (0)

  • Anonymous 
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Organizer 

Monica Roberts Snyder 
Organizer
Tucson, AZ
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