Shunt Surgery in Maryland on 4/23
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:
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
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.
We inhale as we ask in faith.
Two silly words that could never emote the depths of our gratitude as we exhale praise.
Our Hope Remains.
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A week ago I was in surgery in Maryland. Today I'm sitting in my "nest" spot with the cool desert spring air touching my skin as I look out at the Catalina mountains, listen to the bird songs and feel the rise and fall of my sweet Twixie's breath beside me. Healing is never linear. I tend to want to cover my wounds quickly and put on the best face. After so many years of cutting and mending I somehow continued to be surprised at the vulnerability of this in between place.
We are still learning how to be receivers. It's often after the acute needs we need the most prayers, provision and encouragement. Thank you for staying close when it gets the hardest. Each one of you are kingdom currency in our hearts and lives. We are eternally grateful.
Our Hope remains.
Thank you for all your prayers and encouragement. My surgery went well. We decided to completely remove the lumboatrial shunt and tubing and not replace it with an LP. The photo is an X-Ray showing all the stuff taken out this morning. I’m hopeful the working VP shunt in my brain is enough in Tucson.
I am hurting. Incisional pain is very manageable the day of. I’m sure tomorrow will be harder when all the anesthesia drugs wear off. As I began to get out of bed to use the restroom a few hours after settling in my room (just being able to pee after surgery is a big answer to prayer) I developed a very bad headache. It’s not a pressure headache. It could be from loss of some cerebral spinal fluid during the surgery or it could mean I have a leak. I set big expectations for myself as far as discharge, rest at the hotel and flying home Friday. I am surrendering my will tonight. It could look very different. Either way I can trust my Father for healing, grace to suffer longer and continued provision.
I’m paying attention to God’s love. Each of you have been an expression of His faithfulness. ‘Thank you’ will never be the right words, but I will keep saying it.
Our Hope remains.
I'm in the 48 hour window before leaving for surgery when I only have time and energy for straight facts. There is no cortisol left for emotions. This trip is made harder than ever because I am not acute, I am feeling well, and I am so far from care. But I know it's the right thing to do.
-I will fly to BWI. I will Uber to my brother and sister in laws house to stay the night.
-I will Uber to Silver Spring for a 9 am appointment with my neurosurgeon. After I will Uber from Silver Spring to Lanham for pre-op bloodwork, a meeting with pharmacology and a meeting with anesthesia. I will check into the Hilton Garden Inn and my sister, Rochelle, will arrive sometime that evening.
-I will arrive at the hospital at 5:30 am for a 7:30 am surgery. It is still unclear if I will have the LA shunt completely removed or if I will have it converted to an LP. I've done the best the longest with two working shunts. Please pray it will become clear before surgery or during what we should do. Once in recovery Rochelle will update on my Facebook page. This is the easiest way to let all of you know how things went.
Wednesday, 4/24-Friday 4/26
I will hopefully be discharged with no complications and recover a little at the hotel. My sister has to leave on Wednesday, but my sister in law is close, and I've done this thing before.
I have a planned flight home from BWI. Traveling post surgery with a large incision and shunt issues in general is difficult. I consider this my greatest challenge in the next week.
Many of you have asked HOW YOU CAN HELP. This is the first time doing this without our Ohio support system. God is bringing people here to help with the girls and encourage me.
The cost of this trip is more than we can afford. I do not have private health care for the first time in this long journey.
Some of the practical expenses are:
Flights. My dad was able to donate miles to me. The remainder I paid was $241.20
I have to check my bags because of my fusion. I truly can't handle more than a purse navigating the airport alone. $60.00
Hotel. The four planned nights (which could need extended based on my recovery) is $655.58
Ubers in the metro DC area are expensive, and my appointments are spread out. I estimate $200+
I am required to pay the 20% coinsurance for my appointments, scans and surgery. I've had a GP visit for clearance, blood work, EKG, CT and X-rays here in preparation. I've been putting this on my credit card. Something we've never done before.
The coinsurance for the surgery is not clear until we decided what we plan to do with the shunt.
I do not have prescription drug coverage of any kind.
As always we look to God's faithfulness in the past and trust Him with all these things. Your love and prayers mean so much. Our Hope remains.
It's been 242 days since my last surgery. My third shunt revision in two months was August 12th at Hershey Medical Center. 13 days later God moved us to Tucson. I have been the most well for the longest time, and I haven't taken a minute for granted. I will be having the shunt we routed to my atrium in August removed on Tuesday, April 23rd. I will be flying to Maryland on Easter Sunday for a Monday pre-op appointment. The details about this surgery are in many ways private because of the surgeon and other patients involved. And so I'm sharing quietly here.
Please pray for my surgeon and I as we decide if my VP brain shunt is enough or if we need to place a new LP shunt after pulling the LA. These have traditionally failed in me, but the engineering of having two has worked. Please pray for my travel and the trauma of anesthesia and cutting again. Please pray for no complications. Most of all please pray for Dan and the girls as they are left here. Unlike when we lived in Ohio I am not just a turnpike drive away.
Please pray for provision.
In my weakness He shines brightest.
Thank you for your faithful love.
Our Hope remains.
as soon as we get paid I am going to donate. I am a friend of Christy Baileys and I also have two shunts one VP and one LP so get a little of where you are coming from. You are a brave beautiful woman. Good luck!
I don't know why it misses me, but when the Lord places you on my heart the most intense I pray but don't realize you are most likely struggling. I guess since there hasn't been posts I assumed that you were doing well. You are always in my prayers but most often when He urges me and thoughts of you are constant. If there is anything Geo and I can do for you, Dan or the girls, please, please let us know. Often Satan "steals" our peace when we are weak - praying for your faith to remain strong as He is FAITHFUL! Maybe re-read the book by Jerry Bridges, Trusting God to remember His promises. We love you and will pray specifically.
Monica, it was special to finally meet you face to face. I will be praying for the big move... God has gone before you!
Monica, you inspire me so much! Praying for the comfort and peace of God to penetrate the pain and for renewed hope and strength. Holding you close and I know that our Jesus is holding you every moment. Sending you so much love, dear friend.
so much love to you guys...and prayer...and Hope with a capital "H"...one breath at a time...thank you for sharing your heart openly, sister
Heather called early this morning - you have been on her mind constantly. God uses your situation to bless so many others, first in the opportunity to be in prayer to HIM for you and your family, then in sharing your unbelievable consistent strong faith and reflecting your thoughts and feelings by being vulnerable - giving others courage to do the same. You are an amazing Christian and we are blessed to know you. Luvu and prayers continuously going up
Monica~ Is there anyone who can stand in your place while you and Dan go get some quality sleep?
Praying you all through. Thank you for sharing as I can only imagine. Heather was up most of the night praying for Danica - she couldn't get her off her mind...she called me the first thing this morning. I am sur many others woke up in prayer for your precious child also, and for you and Dan to have strength, peace, energy, and comfort. So many, many people are seeking God's intervention on your behalf - stay strong. love and hugs
Hearing of her pain brings me to tears. I pray God comforts and heals Danica.
Jesus, surround Danica with Your peace and love; give her relief from her pain. We ask that You heal her as only You can. Touch her body and make her whole, strong, healed. Embrace her, embrace her family, wrap them in Your loving arms and give them assurance of Your love tonight. Thank You for Your grace and mercy, for Your faithfulness and love. Amen.
AMEN! THANK YOU JESUS! How blessed to have access to wonderfully talented doctors. Prayers continue for Danica and all of you. hugs/love
Tears of great joy! Continued prayers!!!
Thank you for allowing God to work though us! Sometimes in our busy daily lives we don't feel God's presence every moment of the day. Your faith and love for God in the midst your situation. Your strength comes from the Lord.