Monica’s shunt revision 3/22/18
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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My brain shunt is not working. The suffering has reached the critical point where I lose vision and hearing. I'm also having increasing cognitive symptoms.
The vascular neurosurgeon who placed and revised my VP shunt was at the University of Virginia Medical Center. In August of 2017 he moved to Penn State, Hershey Medial Center. Tomorrow morning Dan and I will leave by 5 am to drive to the hospital, and I will be admitted from the ER The hope is that my shunt is not working because of calcification and not something to do directly with my anatomy. Surgery would be tomorrow afternoon sometime.
I will keep you updated here. I must dig deep an find the strength to do the thing I think I cannot do again.
Our Hope Remains
Our family prayed in earnest for a year without surgery. We know this sudden need is an even greater motivator to seek counsel and ask for your prayer about moving to Arizona. Thank you for praying for Dan and I ask we make the trip and my sweet girls who will be home. Please pray for my parents who are always willing to help no matter what.
Our Hope Remains.
I apologize it's been so long since I updated here. I like to spend January in a still and quiet posture. It has been a month of continuing to heal physically. The time I lost after my November surgery has not returned, but I am finding it as gift in a weird way. The usual grief and trauma I work through after each operation is completely non existent. I had my first chemo infusion of the year yesterday. After a visit with the doctor we've decided to move my infusions to every five weeks for awhile.
Dan and the girls are well. Danica continues to be strong and pain free. This is gift! She will have her next scan and neurosurgeon appointment in March. We lost my dear grandfather last week, and there is a deep sadness tempered with joy as we know He is in his forever home with Jesus. Thank you for your prayers.
If you don't yet know about the amazing way God has provided for my long held dream of hosting a retreat for girls with EDS and their moms please take time to visit the website I created: www.OptionEDS.com Dan and I were able to travel to Virginia to be part of a fundraiser for Healing Hearts Respite Foundation. They are donating the beautiful beach house for the retreat in May. For those of you whose mailing addresses I have you will be receiving a post card soon letting you know how you can help.
Every time I visit here I am overwhelmed at the love that has carried us these years. I'm working on a long overdue blog post about miracles. The number here is dollars and cents, but it represents the possibility of help and healing for Danica and I and so much hope for our entire family. Thank you. You are God's hands and heart to us.
Please pray for my shunt to continue to function through the winter pressure. Please pray for my spine to stay strong and no fusion surgeries to be needed. Please pray for my daily pain and other co-existing conditions that are always a struggle. Please pray for Danica's continued safety and solid fusion.
I need strength and wisdom as I navigate the new year of insurance which has changed and become more expensive and complicated and our prescription drug coverage which dramatically affects my daily life. The first few months of the year are hardest. "Abundance" is my word for 2018. I'm finding it everywhere. More than enough in Jesus.
We love you all. Our Hope Remains.
It's been a quiet and private month and a half for my family and I.
My surgery on November 8th was successful. The most glaring symptom of losing feeling in my legs and feet is completely resolved. This is hopeful. There is a great deal of post operative pain, but it is different than the suffering before. It is a hurt that is healing in fits and starts. I haven't driven yet and struggle with putting my socks and shoes on or picking up something I've dropped. My heart is as tender as the large incision on my spine.
I've been counting gifts again. It's a process of keeping my eyes and heart open to all the good in the hard and stopping to name it. Your love for my family and I is life giving, and we can never say "thank you" enough, but I will continue to try.
For the first time in twenty-six surgeries I was intubated through my nose into my throat. For many reasons they can no longer move my neck or open my mouth for even fiberoptic access. I was given a large amount of a drug called Versed, something generally used in a "twighlight" kind of anesthesia, to accomplish this necessary process before I was given full anesthesia. I had a very disturbing reaction to the drug which generally has a short half life. I lost a month of memory. I have little snippets of the clock in my room at the hospital or my sister and friend in the hotel but for the most part I cannot piece anything together without their help. This continued after my parents came to get me and drove me home from Maryland. In some ways it has been a blessing. I've experienced none of trauma or grief I usually do after surgery and hospitalization. But I have always said I am nothing without my ability to remember. I'm one of those people who can recall the color of shirt you were wearing, what the room smelled like, what you said and how your face looked while speaking to me. To have a month spent with people I love dearly just gone is heartbreaking.
I'm cautious with myself. I'm continuing to have difficulty recalling words or how to do simple tasks. I'm slowly returning to my #pentopaper gratitude. If I've missed a note to you for kindness shown or if I sent two know I'm doing the best I can.
For all your prayers, your tangible gifts, the meals, the care packages, the rides for my girls to and from school, the cards and texts of encouragement I am overwhelmed with the miracles born of this kind of love layered day after day, week after week, month after month and year after year. Every day there is fresh manna, from those of you who have been with us since the beginning and often from people and places we never could have imagined. It changes everything.
We are leaning into 2018 with fresh hope. On November 30th we celebrated Danica's one year anniversary since her big surgery at Johns Hopkins. She has no pain. She has no headaches. Miracle. I am finding inspirations and purpose in the planning of the first "Option EDS" retreat in May in Corolla, NC. (If you don't know about this long prayed about calling you can visit at www.OptionEDS.com.)
I will return to writing over on the blog as it comes. Thank you for reading here. Our Christmas cards are slowly finding their way to the mailbox, and we love receiving yours.
Your generosity to our family will ripple into eternity. Thank you for loving us so long and so well.
Our Hope remains.
Tomorrow is my twenty-sixth surgery. I will arrive at Doctors Community Hospital at 8 am. I'm having a PICC line placed for venous access. Surgery is planned for 11 am. It is a detethering of my spinal cord at L2 with bone marrow aspiration from my hip and fusion.
Tonight, as I talked to my girls far away in Ohio and navigate the increasing anxiety of Dan along with my own, I come to the only place I know to find any peace. I''m held in Jesus.
Thank you for praying for rest tonight, for every detail in prep tomorrow and for Dr. Henderson and his team as they operate. Please pray for no complications, pain control and relief of symptoms.
Thank you for your faithful love. It makes all the difference.
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.
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.