Flying back to Ohio for Rituximab Treatment
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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We want God's strength, BUT WE DON'T WANT TO LIVE WITH OUR CONSTANT GAPING NEED.
Everything in me longs to put my hand to the plow and create glory for God until I'm utterly unable and my resources are bare. But God was never interested in my strength, He's most pleased with my surrender. "-Alia Joy, Glorious Weakness
I'm not blogging. I'm writing a book about your love. It's taking all the words. But your love is the inspiration and the miracle and so I will humbly scribble our gaping need here once again
I'm not well. I've been searching and fighting for my Rituximab infusion for my diagnoses of autoimmune encephalitis/PANDAS/PANS somewhere here in Arizona. We've tried oncologists, neurologists and rheumatologists. When my brain gets this sick all my other comorbid conditions also flare. I'm writing this in bed after a horrific Mast Cell attack wrecked me yesterday. My mouth is still very swollen. I am exhausted and wrung out from the gastrointestinal symptoms.
I will fly to Ohio next Tuesday, 8/20 for my all day Ritux infusion on Wednesday, 8/21. My mom will come with me. I will stay with Janet. I will be there Thursday and Friday to recover and then fly home on Saturday. Travel is hard. Especially since I went to Savannah with Laney for her SCAD summer session. It's so hard.
I've let it go far too long. I held out hope something would come through here. The girls were off school so short a time this summer and both had their own medical issues. I pushed to try and get someone here to read and understand the research and my complicated case and the long road I've traveled to find this successful treatment and agree to help.
I called my Ohio oncologist, and he said pick a day and come.
My Medicare B will pay 80%. This leaves me with $2,200 due. They tried to get me any assistance for this amount but could not.
Gaping need. God goes behind and before us in all these things.
Dear friends already helped with my $500 airfare. It was the help I needed to make the appointment and commit to going. I tried to explain to them the complicated numbers around each medical decision our family makes. I understand you all wanting to see a spreadsheet. Part of the story is the ledger. It's the never all paid but always enough.
A year ago today I went into surgery at Hershey Medical Center for the third shunt surgery in two months. I wore the temporary tattoo you see in this photo. "Thy Will Be Done." This is where God has asked me to surrender. Over and over again He's chosen to get the glory here in weakness. Thirteen days later our family boarded a plane for Tucson.
There is so much praise. Our lease has been renewed for eleven months here. Thank you so very much for praying. This will get us through Delaney's high school graduation. Delaney is doing much better on her new cardiac medications. We see her cardiologist again in two weeks. It's made such a difference in her life already. Danica's school lovingly made all the accommodations needed to help keep her neck as safe as possible while we watch her symptoms and pain the next few months.
Weakness and surrender may be our spiritual gifts. Our pride and shame tempt us to hide away, but I see His glory. As I write it sets the words on fire. His strength made perfect. I see your names in this strange and achingly beautiful economy of love.
We suffer gratitude.
Our Hope remains.
PLEASE listen to Laura Story's new song 'I Give Up' released with her book by the same title. It's on repeat over and over again. https://youtu.be/UvinzcomRhw
Thank you. I continue to use these words that cannot hold the weight of our gratitude. Do you know the kindness that saves a life? Do you understand the giving that is multiplied into the spiritual currency of hope and the glory of God? This gofundme has been here for years. Why do you faithfully love us forward in the hard?
I'm writing about these things in earnest. Specifically next week as I accompany Delaney to Georgia to be near her while she participates in a scholarship seminar at SCAD for interior design and mixed media art. I will be writing. Would you please pray? This is the story. The gauntlet is woven on the loom of your love.
I'll start this update with praise. I talked to Danica's neurosurgeon late last week. We will follow her closely. She will be restricted as we watch her symptoms and rescan in 3 months. There is instability in her bony fusion below her hardware. The goal is to not go back in surgically until she grows. Please pray for the protection of her spinal cord and her heart as she begins middle school being left out of things. Please pray for me as I advocate with her new teachers and administration.
Delaney's cardiac tests were pushed up. After her ECHO last week they scheduled her tilt table test for Friday and then had us see the cardiologist at 8 am this morning. She has severe POTS, postural orthostatic tachycardia syndrome, also known as Dysautonomia. At one point in her test her heart rate went from 62-145 within seconds. It explains why she's felt so bad and scared. She was prescribed two medications the pharmacy had to order. Please pray she can adjust to these without side effects and with improvement in symptoms. She was also referred to several other doctors. The Physical Therapist has helped EDS/POTS patients with symptoms in other ways than medication. Our insurance will not pay for these sessions. The insurance price for her meds was more than trying to cash pay with a GoodRx card. Once again we are fighting for access to care. Please pray for Delaney as she grapples with the diagnosis and the other specialists including genetics coming up. She was the 'healthy' child. She is entering her senior year and college applications with this new realization of challenges and learning about living her most well life with EDS.
I am following a lead today with a local rheumatologist who may take my Autoimmune Encephalitis/PANS case. Please pray. I have blisters all over my hands and my brain is on fire. I need this infusion. If they agree the 20% would still be required. This is prohibitive. But we've seen miracles.
Dear ones, Thank you. I'm so very tired. This morning I looked over each donation here. My white knuckled grip on these hard and seemingly impossible things loosened into open hands lifted heavenward. He is enough. He knows what to do. Our Hope remains.
Danica had a flexion and extension X-ray a few weeks ago. Her increased pain and symptoms point to instability and possibly something wrong with her hardware and fusion. The new insurance company denied a CT. It was canceled last week. We appealed. They called Wednesday to cancel the scan rescheduled for today. My mama gut said we couldn't wait for more appeals. I took her for the CT this morning and put it on a credit card. By self paying we waived the right to appeal or be reimbursed.
Danica looked at Dan and I Wednesday night and said so simply, "I know something is wrong. I can feel my hardware, and I'm moving way too much." She's wearing an Aspen collar in her room while doing art at her desk. Her ring and pinky fingers are going numb. She sees flashes of light and sparkles when she tries to rotate her neck or look up or down.
I'm very careful not to give her language to describe her symptoms. I asked her to write something to send her neurosurgeon. Her faith blew me away.
"I’ve had almost three years of thinking my hardware was going to be okay for a long time, but in these past few months my neck has been feeling unstable and I’ve been asking my mom more and more to massage my neck because of pain. I have much more movement than I used to. I feel like I need a brace sometimes. I especially knew something was wrong when my neurosurgeon said we need a CT scan to get a better look at my hardware and fusion. I’m actually not that worried that I might have to have surgery. Last time, in 2016, everybody was saying how brave I was, but for me it was a surgery just like I had seen my mom have over and over again. She was the brave one. Now I’m worried about the medical bills, and that our insurance company denied the CT scan. I still know that God will make a way, because he has my whole life, no matter how hard all this EDS/Chiari stuff has gotten. "
Delaney saw a cardiologist and has several grueling tests scheduled in the next two weeks. She's afraid. She's always told everyone she didn't get the bad genes. She declared herself the healthy child. She avoided Danica and I's appointments and surgeries and hospitalizations. I've watched her decline and suffer and wrestle with the reality of EDS and other comorbid diagnoses. The Option EDS retreat was gift to her. She was able to see other young adults diagnosed, struggling but also living. After attempting a hike with her friend on Saturday she came back shaking and crying. She was scared. And her biggest worry, "Mom, I'm so afraid people won't believe me. I don't even want to believe me." Ahhh, yes, the psychological warfare of invisible illness. It breaks my heart.
I've not been able to get my Rituximab since a recent flare. My brain is on fire. I cannot find someone willing to take my Medicare to put it out. I'm tired and angry. I'm obsessive and afraid. My hands and feet are blistered and burn. It's gone so long I've literally given up. I'm fundamentally road blocked from advocating for myself right now. How does this happen after over a decade of fierce fighting? I need to fight for my girls more than ever.
Dan sent me this note this morning, "Miss you. I always miss you. The 'home life' with the growing kids, pressures, debts, uncertainties, etc., hide the fact that I miss you always."
Many of you have asked about our lease here as well. It is still not renewed and we are less than 60 days away from it expiring. Please pray for this. Living here has been miracle and gift, something we never could have done on our own. The uncertainty of renting with all we are facing and school beginning August 1st is perhaps one of our greatest aches. We are home here but so desperately want to settle in a home.
It's been months of sunshine and no rain in the desert. As we lean into a coming monsoon season and reflect on God's goodness to us and ask for greater grace to each next thing this song by Nichole Nordeman is on repeat.
Thank you for your love and prayers. They have been life giving. Our Hope remains.
Friends, I promise a real dig down deep post soon. Until then will you please be in specific prayer for our family? I’m asking believing God will guide and provide for these pressing needs:
1. Delaney’s health issues, in particular her increased dysautonomia symptoms, adrenal fatigue and signs of cervical instability. She’s always been the child that’s loudly said, ‘I don’t have EDS. I got my dad’s genes.’ Over the past year and a half we’ve seen so many symptoms increase, some debilitating. We begin the long and exhausting process of diagnosis tomorrow. It will be a first step in many. Her $3,000 deductible must be met. Access to care is becoming credit card debt. We’ve never done this before.
2. Danica began the process of braces last week. This is challenging because of her EDS and delicate TMJ as well as her fusion. We have another appointment tomorrow. It’s $4,600. This ortho work is not covered by her commercial insurance. She also has a protruding C6-7 below her skull to C5 fusion. It’s changed drastically in the past month and her pain increased. Her Hopkins neurosurgeon sent orders, and we will have imaging Wednesday morning. Her $3,000 deductible must be met. Access to care is becoming credit card debt. What if the scans show issues with her fusion? God, I can’t.
3. We’ve lived in abundance in this beautiful home for 288 days. There is still no formal lease renewal. My deep desire for home aches. I ask. I ask believing. Please God, one more year??? Or could I even hope for a home of our own...? I want to settle in my nest and exhale. I want His will most of all.
I am recovering slowly from my shunt surgery. I had the great privilege of hosting several dear EDS families at the second Option EDS - the retreat in Corolla the last week in May. Such gift! My Dan and girls were able to be part of sweet community and serve.
Dan continues to work hard at Broadpath and pray for opportunities to advance. His load at home is still heavy.
Please lift us up. Sometimes we are tempted to forget every faithfulness and fret, but how can we we not look to God’s love so many years and trust Him fully for these specific needs?
Thank you for your love which has saved us for so long. Thank you for praying and sharing. Each time the need is met in miraculous ways..a call from the Spirit to someone’s open heart.
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.