The latest

I wanted to offer the latest updates following Lee's appointment at the Neurology Clinic in Seattle and further correspondence with her New York neurosurgeons. First, let me thank all of you for your prayers ahead of the Seattle appointment. Lee has been struggling significantly with managing her pain and energy levels, so just getting to the appointment was significant. The neurologist we saw there is one of the most kind, compassionate, and competent specialty physicians we have seen in our time here in Washington. She remembered well having evaluated Lee over four years ago during a consultation with the Neuromuscular Clinic and spent a significant amount of time reviewing Lee's history and evaluating how her condition has evolved and deteriorated since our last visit.

It's difficult to accurately summarize all the neurologist evaluated and proposed, but I will do my best to cover the most important elements. She believes that Lee's symptoms and recent decline are likely caused by two somewhat separate conditions. First, the neurologist sees clear evidence of central nervous system "insult" that aligns with the suspected compression of her brainstem area where her previous surgeries were focused. This would account for the cardiac, GI, and headache components of Lee's symptoms. Second, the doctor also believes she has a metabolic myopathy that is causing the increasing muscle pain and weakness, particularly in the largest quadracep muscles in her legs. This would explain the dramatic increase in leg pain and muscle fatigue that Lee has experienced in the past few months. To further

explore and address the central nervous component, the neurologist is most willing to consult with Lee's New York physicians and assist with any necessary approvals to get her back there for follow up evaluations. The neurologist will also be consulting with the neurosurgical team in Seattle to see if they have anything to add to the conversation. We also heard back directly from the New York neurosurgeon after he received and reviewed the CT scans Lee underwent and forwarded last week. While the preliminary feedback via email was somewhat limited, the surgeon indicated he saw evidence in the scans that the area of Lee's previous fusion appears to have instability between her head and spine. This would again align with the suspicions and symptoms that point to increased pressure in Lee's central nervous system and particularly at the base of her skull in the brainstem. To address the suspected myopathy, the neurologist has consulted with a neuro geneticist within the Seattle practice who is willing to meet with and further evaluate Lee. In the meantime, there may be some additional medication options that can be explored to help manage her muscular symptoms.

As you might imagine, trying to process all of this information from multiple sources and determining what the appropriate next steps are for Lee's care look like is a bit of a daunting task. I would ask that you pray specifically for wisdom for us and Lee's various doctors on how best to coordinate productive communication and next steps. I anticipate having her Seattle and New York teams talk directly while also beginning the process of scheduling a return trip to New York for further evaluation there. With Lee's current levels of fatigue, pain, and nausea, the idea of any significant travel is a bit overwhelming at the moment, so please also continue to pray for relief of her symptoms. All of this is taking a cumulative toll on Lee, so my final request would be that you pray for her emotional health. She continues with her strong faith and trust in our sovereign and loving God, but she is admittedly weary in the midst of this ongoing suffering. We continue to be blessed by our great support network and want to say thank you yet again to all who love and care for us so well. We will update again as soon as we know any next steps.

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Messages

Rae Jean Bettmeng

October 26, 2013, 9:20 PM

Our hearts long to take this pain from you both. We love you and continue to pray for you. We are so thankful that Lee is in "your" care Steve. You are a faithful

husband and are a beautiful example of God's love for HIs bride! May you find strength and hope in the days to come. Kimball & Elizabeth Parker October 26, 2013, 9:31 PM Thanks for the detailed update. Praying for continued wisdom, insight, strength and courage. May God continue to reveal more of Himself through this season! We love you both!

Shirley Keith

October 26, 2013, 9:33 PM

This information is overwhelming to me, but I will pray for those things that you ask. I feel like the doctors' input is progress but does not relieve Lee's symptoms yet. As always,

sending love.

Wendy Sternshein

October 26, 2013, 9:50 PM

May you and your caring team be surrounded with communication and clarity. Lee, may caring arms embrace and comfort you. Both of you please know my heart and thoughts are with you.

Steve Braden

October 26, 2013, 9:58 PM

Uncle Steve and Aunt Helen is praying specifically for wisdom, comfort and peace in these times of decisions. Steve, you are amazing. We love you both.

jim maples

October 26, 2013, 11:22 PM

In Christ are hidden all the treasures of wisdom and knowledge. I pray our gracious and loving Savior will grant both you and Lee, along with all the doctors, His wisdom and knowledge in evaluating and deciding on treatment options. Lee,

may God show you the perfection of His strength in your weakness and pain. I love you. I pray you will have an overflowing measure of His all sufficient grace. Love, Dad

Sandi Henry

October 27, 2013, 12:17 AM

I don't know how you are able to comprehend everything the doctors have told you, but it sounds like they are getting to the root of the problem and working well together. We will keep praying that Lee will have relief from the pain and nausea so she can make it to NY and have some sunshine in her life. It hurts so much knowing how long you both have been fighting this. Trusting God's timing. Thanks for keeping us updated. Love you.

Eunice Goodwin

October 27, 2013, 12:37 AM

Trusting that the doctors will find answers and treatments to heal and restore... Have you explored the idea of a company's corporate jet that could fly you privately and directly to NY? There may be some philanthropic company/individual that would do this due to the severity and rarity of Lee's condition. Just a thought... Love, Eunice and Dan

Sandy Temple

October 27, 2013, 1:10 AM

Continuing to lift you and Lee up in prayer.....praying all that you asked for and strength and courage, comfort and peace. Love and prayers to and for you both.....

Ruth Wolven

October 27, 2013, 4:01 AM

I agree with Eunice about a private Jet. Here in Michigan we have Wings Of Mercy who fly patience to appointments etc. Might be worth looking into. Prayers.

Ruth Wolven

October 27, 2013, 4:02 AM

Patients---but patience is also good to have!

Becky Cole

October 27, 2013, 4:28 AM

There are many times that He will bring Lee to my mind and I stop to pray for her. I am very thankful for these updates because they help me to pray more specially for Lee - and also for you Steve. Praying for our Heavenly Father to fill her doctors with wisdom and discernment

as they continue to work together. Blessings for you both.

Ruth Warner

October 27, 2013, 4:39 AM

I certainly understand the feeling of being overwhelmed with information and trying to process all that you are hearing. I will pray for Lee and you for needs you indicated in the update. My thoughts and prayers for you are ongoing. Nola von Neudegg October 27, 2013, 6:57 AM Think of both of you and praying for guidance, rest, peace and healing.

Carolyn Hamby

October 27, 2013, 11:06 AM

Thank you for the updates so that I can pray specifically. Though it may not seem like it at times, our faithful God has you in His hands! R. Archer October 27, 2013, 8:34 PM Lee and Steve, You don't know me, but I had the priviledge to work with Lee's brother, David, at Oak Ridge High School. Although he is private when his personal life is concerned, he did share your story. And even though he left us for "greener pastures," he is still special and I try to touch base with him when I can. I just wanted to let you know that people you don't even know are praying for you both. As a matter of fact, I would like to add your names to our prayer list at my church--with your permission, of course. I know you have endured a lot of pain and many trials, but your faith is so inspiring to me. May God continue to bless you and your families. With Blessings, Rosemary Archer

Oak Ridge High School

Jan Bennett

October 28, 2013, 3:43 PM

Praise God for His obvious answers! Thank you for such an informative message. Praying for God's plan in all the details, wisdom for drs. and especially for you and Lee.

Cindy Hambly

October 28, 2013, 4:22 PM

Thank you Steve for the update. The information is overwhelming to us so I can only imagine how overwhelming it is for both of you. We are all out here praying for strength relief from pain and healing both body and spirit.

Terry Puckett

October 28, 2013, 4:32 PM

Praise the Lord for the kind,compassionate, and competent neurologist. Praying for you both and the family.

Linda Hamilton

October 28, 2013, 5:31 PM

Am not surprised that you are receiving such excellent care from the Neuro Doctors.....several years ago our son, Sean, was attacked by a stranger in Ballard. He was hit in the head from behind (never saw it coming) which resulted in 2 brain bleeds (front and side), skull fracture, Traumatic Brain Injury, and 100% probably permanent hearing loss in left ear. He was whisked to Harborview Neuro ICU (which is associated with UofW, as you know), where he spent nearly a week receiving some of the most brilliant Neuro care that God has revealed to human Doctors to date. Am so very thankful that God has opened doors for you there. Am praying for wisdom for all of them, smooth coordination between Seattle and New York, and strength and encouragement for both of you. God promises that He will never leave us, and He is with you in a mighty way. How He ministered to me during those difficult days is hard to put

in to words....it was nothing short of miraculous. I expect the same will occur with the both of you. God Bless! By the way, Sean is doing very well today. It's really a miracle.

Chris Hill

October 28, 2013, 6:04 PM

Our thoughts and prayers are with you both. Bob & Chris Hill

Joan Bouck

October 28, 2013, 7:53 PM

You have our support, prayers, and compassion to help the two of you with whatever you need and whatever we can do to help on this most trying of ordeals for you both. Joan FD3

Bruce Ensign

October 29, 2013, 12:31 AM

Thank you for the update. Your needs have been lifted up in prayer. May God give all that you have requested.

sue ensign

October 29, 2013, 1:30 AM

Praying

Don Disney

October 29, 2013, 1:18 PM

Steve & Lee I am so sorry for your pain and suffering. Please know that I remain concerned for you and love you. You are wonderful people.

Emily Dreyer

October 29, 2013, 10:36 PM

I just read your sweet message on my CarePage and for lack of a better way to communicate, decided to leave you a message as well. I am sorry about the bad news- I pray that the next few days you may be able to wrap your mind around what the news may mean, and what's next for you. I follow your CarePage closely, and you are in my prayers as well. Love, Emily

Emily Dreyer

November 1, 2013, 1:57 AM

Just saw your latest message. You may GLADLY email me or use facebook I use that a lot too. I hope I can answer some of your questions!

Wanda Royal

November 18, 2013, 2:43 AM

Lee/Steve, I'm in Martha's class at church, we have been praying for you for a very long time & will continue to keep you both in our prayers. May our Mighty God bless & comfort

you both. I'm praying your trip to NY brings you much relief but will continue to pray for complete healing. May The Lord Bless You Wanda Royal