Kathryn's Pages

Hi everyone,

We still can’t say for sure if Kathryn will qualify into the study.

We took Kathryn back to The Center for Clinical Research in NC on November 4th for the Neridronate study screening. Two days ago study workers called to let us know that she is 1 point too low on vitamin D to qualify, so they started Kathryn on supplements and we will return to NC on November 23rd to let them draw another tube of blood. No the study will not allow it to be done locally, believe me I begged… Uummph!!

We HATE putting Kathryn through the terribly painful travel for unsure results! When we were in NC we heard that the US results with Neridronate are looking considerably less exciting than the original reports from Italy. And, with the study qualifiers being so strict, the number of people tested so far is much lower than I imagined.

If Kathryn can still qualify, her IVs will be delayed to mid-December with a follow-up right before Christmas; December will be VERY BUSY!

None the less and more than ever, we continue to ask God that if it is His will, Kathryn will qualify and receive 4 IVs of Neridronate, NO PLACEBOs!!

Our love and blessings to you all!

But I trust in you, Lord;

I say, “You are my God.”

Let your face shine on your servant;

save me in your unfailing love    Psalm 31: 14 and 16

Sadly, last Friday we had to cancel Kathryn’s appointment with The Center for Clinical Research in NC to participate in the Neridronate drug study during September/October.

A drug that disqualifies her is still not out of Kathryn’s body. We will not schedule a new appointment until she tests negative.

We are praying that things will work so that she can receive Neridronate (not the placebo) during VCU’s break in December/January.

Kathryn is challenged by but doing well with 3 days a week of VCU classes; lots of school work and learning are going on! 🙂

We don’t say this often enough here on this site… Kathryn is an amazing person! Her strength of mind and heart continues to blow us away and we know that she is an answer to prayer and a precious gift to us. We love you so much Kathryn!

 Eternal One:  I’m the One who responds to your pleas and cares for you.
 I’m like a flourishing juniper tree; I provide life year-round.      Hosea 14:8 THE VOICE

We are sad to report that Kathryn will not qualify to participate in the Neridronate study this summer because one of the meds she has used for the last 2 years is not yet out of her system.

However, she is in line to participate later in 2015 or early 2016.

Her pain is very high right now so, since she cannot participate in the study this summer, we are planning Ketamine treatments soon. A 6 week period is required between Ketamine and drug study participation but her pain is too high to delay Ketamine any further.

Along with other clinicians, researchers and CRPS patients and their families, we plan to petition the company who is handling the Neridronate study to ask them to eliminate this particular medication as a disqualifier.

(I apologize for not giving the name of the company or the drug, but that seems best at this time.)

Prayer requests:

• For God’s will and faithful help
• That this drug company eliminates this medication as a disqualifier
• That Kathryn is able to participate in the study soon and does not get the placebo
• That this or another treatment becomes available soon for CRPS
• For relief for all those who suffer with chronic pain

Therefore if you have any encouragement from being united with Christ, if any comfort from his love, if any common sharing in the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and of one mind. Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the others.   Philippians 2:1-4 

As we mentioned in a previous update, this summer Kathryn is attempting to participate in a drug study that requires her to give up two main treatments that help with pain. One of the treatments she must do without for the summer is Ketamine…Yikes!

The test drug, Neridronate, sounds promising. Used and studied in Italy since 2008, the reported results we are hearing: a hundred people treated with Neridronate and a year later those hundred people are still CRPS pain free.

Numerous studies are starting across the United States and CRPS patients are clamoring to be involved. But participation doesn’t come without challenge; Kathryn is attempting to jump the numerous hoops required to be accepted into the trial.

Location of study: The Center for Clinical Research, Winston-Salem NC

Screening for participation: July 13

Dates of IV infusions if screening is passed: July 28 and 31 and August 3 and 6

Follow-up visit: August 10

We pray that Kathryn will be able to make it into the study and through the challenges of participating.

And we pray that she will not be given a placebo drug in the study.

 …but the Lord was my support.
 He brought me out into a spacious place;
    he rescued me because he delighted in me. Psalm 18:18-19 NIV

KATHRYN ATTENDED GRADUATION and pain was controlled enough from 2 Ketamine treatments that she enjoyed the event and was able to have a few people over the next day to celebrate, PRAISE GOD! (We posted graduation pics on Facebook but I apologize for the delay in updating here.)

Kathryn’s senior class raised awareness and around $900 cash for CRPS research in honor of Kathryn. WOW, thank you to the many students and staff who gave so generously! Mrs Cranor, you are amazing for spearheading a fundraiser, thank you with all our hearts! And thank you to the many teachers and administrators who helped, supported and told the story of CRPS to interested students, YOU ARE ALL OUR AWARENESS HEROES!!

At Kathryn’s Graduation Dr. Newsome, the superintendent of CCPS, highlighted Kathryn’s story! Considering all the difficult challenges faced and surmounted by many Manchester High School 2015 seniors, Kathryn and her family were humbled beyond words that her story would be highlighted. Much joy and thankfulness that a stadium full of people heard the initials CRPS, the name Complex Regional Pain Syndrome and a frank description of the extremely difficult disorder. Awareness was blended with hope as all heard the courage with which Kathryn approaches succeeding through extreme pain. It was a GREAT DAY FOR AWARENESS!! Thank you Mr. Koste and Dr. Newsome!

Thank you Dr. Millhouse and Senior Class Sponsors for making sure Kathryn was as comfortable as possible during graduation!

As the mom of a child with CRPS the feeling of watching a child push through countless absences and unrelenting illness for 7 years to complete school with honors… it’s beyond words.

Congratulations My Missy, you are an amazing young lady! Next… Virginia Commonwealth University!!

You, our loved ones and partners in prayer, have been on my mind very much the last 2 months. Much has happened and much has continued the same.

We completed a very big part of mold remediation -the new duct work and air conditioning units. Therefore we are much closer to having Kathryn in a mold remediated environment, all because of amazing support and love sent our way (Rhonda and Andy and many others, you know who you are) and it’s with full and humble hearts that we remember you with great thanks!

Kathryn’s pain has been very high this spring, we usually aren’t sure why. Could be high pollen, could be her living at home while we’re pulling up carpet etc. She has needed several Ketamine treatments but delays due to insurance and graduation were necessary.

Yes, she is a high school graduate, complete and finished! Amazing administrators and teachers decided to call her finished early because of her health and her good grades…. Thank you so much to her administrators and her awesome teachers this year, you blew us away with your care and support!!

First Day of School

Graduation!

Seven years ago, when Kathryn first became ill, a very dear and wise friend began guiding Kathryn and I by the hand through the challenging maze of learning to advocate for Kathryn at school. I felt alone, very lost and fearful; how were we going to achieve an education for Kathryn through nightmarish pain and monstrous medication, especially when that pain was so often invisible to others? With this friend’s wise guidance, the love and support of so many of you, and with God’s constant help we have learned to educate the educators about CRPS, to puzzle-solve creatively, to communicate simply and clearly with teachers and administrators, and most important: we have learned to LOVE every face along the way, by God’s grace.

That wise friend has chronic pain herself and knows well the mental fatigue associated with communicating about her illness. So she wrote the following as one more dear favor to me:

By Francine- In scripture the number seven represents completion. Kathryn has struggled with pain for seven years and our hope is for this journey of pain to be over. Kathryn has been accepted into a study for a medication successfully used in Italy. Evidence looks very promising for this medication’s ability to turn down CRPS pain. Rejoice with us about this research and ask for God’s will to be done.

As in many medical trials some patience’s will receive the drug while others will be given a placebo. In the random selection of placebo verses the actual drug, please pray that Kathryn will receive the medication.

The trial will require 4 days of treatment, and multiple trips to North Carolina. Riding is a trigger for pain, as the miles click upward so does the pain. The pain then acts like a sponge soaking up her strength and stamina. An obvious question would be why not stay at the Ronald McDonald House and eliminate the travel. The issue then becomes creature comforts. Her room, her own bed offers controlled relief as they fit her like a well-worn shoe verses her body striving to adjust to different surroundings. Please pray for wisdom in knowing if we should travel or remain in North Carolina. Ask that she be given stamina to endure the length of the trial and for complete healing.

CS Lewis said, “God whispers to us in our pleasures; he speaks to us in our work, he shouts at us in our pain.” Over these seven years we have heard God’s voice over the pain. His words are always ones of love and encouragement often echoed by many of you.

Today we give thanks for Kathryn’s teachers and the administration at Manchester High School. Kathryn has completed her class requirements and will graduate on June 5^th.  In scripture the number five represents grace. Indeed we have been the benefactors of much grace. Kathryn never gave up, pushing through pain whenever possible; at a young age she has come to care for learning as much as good grades. This is not pride with which this is written, but with thanks to God who has given her the ability to do all things well and to all those who have helped her accomplish this major feat.

Kathryn’s pain is currently unmanageable and much of her time is spent in bed. Kathryn and her mom are presently in NC for a two day treatment planned to address her pain level. Pray with us that she will receive sufficient pain relief to be able to attend graduation. Her success is not just what she has achieved, but what she has overcome. Even the riches chords require some black notes. Kathryn has kept the melody of hope trusting in His timing. Join us in giving thanks for her completing high school and as this day of celebration arrives for her to be able to walk across the stage with her class.

Could you ever know the depths of our gratitude for coming along side of us over these past seven years? As we face the upcoming days, knowing you are on this journey with us is a great source of strength and encouragement.  Thank you for your love and the many acts of kindness you have shown our family. You have helped us to see the sun through the thickest clouds.

Kathryn’s pain began spiking again 4 weeks post treatment and it has continued to increase. At this time she’s averaging an 8 on a 1-10 pain scale. However, we still see positive results from the week in the hospital on Ketamine such as pain has not spread to full body again and meds still have the ability to bring pain down to a 6. These are results that day treatments (boosters) alone cannot give. This may not seem like enough but we are very thankful for any relief!

Medication changes and their nasty side-affects have been tough during the last month and in combination with increased pain, Kathryn has been struggling through partial days of school and missing school frequently. She’s doing most of her school work in bed.

Kathryn’s family is heartsore and, as always, is looking for alternative treatment options to make the torture stop and to give Kathryn a life!

Today Kathryn and mom are in NC for a Ketamine booster. Kathryn is half-way through the treatment at this moment and is doing well; we keep getting better at this thing 🙂

I’ve been meaning to share Kathryn’s college essay with all our friends who visit this site. I believe it reveals an amazing attitude which is, at least in part, the fruit of your faithful love and prayers and God’s great mercy. So here it is….

KATHRYN’S COLLEGE ESSAY

As a young child I whirled, jumped, and pirouetted. At the age of ten my dancing stopped.  I was given a “life sentence” with the name Complex Regional Pain Syndrome. CRPS is a pain syndrome in which the victim suffers constant, excruciating neuropathic pain. It is a progressive affliction of the Sympathetic Nervous System that leaves physicians, specialists, and researchers scratching their heads. Some patients find a treatment that brings them to remission; others never again experience a painless day.  I am one of the unlucky few who fall into the latter category.

As a young child, I loved playing basketball, volleyball and ballet. CRPS abruptly slammed the door on those activities. Classical guitar, a passion that began when I was seven, became my primary pastime and outlet. Although I never stopped playing, CRPS limited my performance opportunities. I was invited to attend the All State Virginia Guitar Ensemble for two years in a row. Unfortunately, days before I left for the second event, I had to back out due to CRPS pain. I spent months preparing for this event, and was frankly heartbroken to miss it.  I devoted hundreds of hours to practice and looked forward to rehearsing and performing with Virginia’s finest guitar students.  While I didn’t get to enjoy the experience, I am not sorry for the time I spent with my instrument. While I don’t have the luxury of more typical expectations, I have the gift of music. It has been my salvation.

Although the initial diagnosis was grim and borderline hopeless, I decided that my chronic disease would not be wholly negative. I became determined to use my chronic pain as a blessing for the community of chronic pain sufferers.  I have been pained by my nervous system and the awareness of the pain and suffering CRPS has caused my parents, brother, and close friends.  This baffling condition and the impact on those I love have contributed to my transformation from carefree young child to a determined and self-reliant individual who will have a positive impact on others.

With the help of physicians, family, and educators, I continue to explore methods of improving my daily function and overall health, and have come to appreciate collaboration, research, medical technology, and patience.  I recognize that my condition required me to depend on my closest friends and family; it has also catapulted me into adulthood.

            Due to my frequent inability to physically attend classes, I embraced long distance learning with my instructors. This method of learning required me to exercise discipline and assume full responsibility for my learning. It also taught me to value the opportunity to learn. I have made the most of my educational opportunities and excelled in academics while battling chronic pain. I learned to use alternative educational resources and to push myself beyond normal limits to succeed. I discovered that my education is not limited to the classroom. Every experience is a learning opportunity.

At ten years old, I began considering a career in medicine to help treat people who also suffer from chronic pain. My interactions with healthcare professionals after diagnosis led me to believe that western medicine needs researchers and problem solvers. The world can benefit from a person who knows the power of the scientific method, and who has applied the scientific method to her own life. I hope to challenge the scientific community to ask itself new questions.

            While seemingly impossible, joy and purpose amidst indescribable pain is feasible. My life has been, and will continue to be, joyously focused on the hope that science and medicine will soon have more to offer those who suffer from daunting disorders like Complex Regional Pain Syndrome, Fibromyalgia, Arthritis, Lupus, and many others. Although I may not be physically well enough to twirl and leap, my ultimate goal is to ensure that no one else will ever have to stop dancing.

TWO SHORT ANSWER QUESTIONS

Question: As you start your college career, what is your primary goal as a student and how have you prepared to meet this goal, how do you plan to succeed, how do you feel you will do at VCU?

Answer: I plan to pursue a degree in science in order to conduct medical research. Throughout my schooling I have had a special interest in math and science. My interest in medical science reached its full potential when I was diagnosed with Chronic Regional Pain Syndrome. I have been to doctors all over the east coast, exhausting all options to achieve pain control. My experience with CRPS has inspired me to want to study pain syndromes and contribute to their eradication. I hope to contribute to the scientific and medical communities and patients in the future.

   My high school career was marked by frequent absences from school, requiring distance and self-directed learning. While my condition required me to deviate from the Honors track I had been on, my academic commitment and energy never faltered. I am driven to succeed and have demonstrated the ability to do so. A modified schedule may be necessary but need not detract from my pursuit of a rigorous program of study. I am confident that the discipline and perseverance I cultivated to cope with CRPS will serve me well at VCU. To VCU I will bring strong communication skills, cultivated in my efforts to advocate for my health care needs, and commitment to excellence.

Question: Describe a challenging situation you’ve faced. Briefly state the situation, how you responded and why, would you have done anything differently, has it affected or shaped who you are today?

Answer: My personal essay provides details of my experience with Chronic Regional Pain syndrome and chronic illness. Although my journey has been marked by pain and struggle, there have also been triumphs. One of the most difficult experiences I had was the discovery (during a meeting with a pain management specialist) that the opiate medications I had been prescribed for years were in fact making my condition worse. In that doctor visit, I discovered that accepted medical practice was flawed. Then, I went through the very strange and difficult experience of controlled detox in order to transition to alternative pain management. I felt I had no choice but to endure excruciating withdrawal to improve my health. This was one of the most taxing experiences I have had. I triumphed over physical dependence and grew determined to contribute to a better understanding of pain and its treatments. There are numerous ways in with my experience with CRPS has shaped my adolescence, sense of self and relationships.  While I would not wish CRPS on anyone, I can honestly say I am grateful for the strength, courage and determination I have discovered in myself as a result of its presence in my life.

Kathryn’s response and recovery to this Ketamine has been much easier than in the past! As usual, her CRPS pain went down to ZERO the day after a 7 day inpatient Ketamine and nerve block (we usually forget to mention the nerve block) but in the past other difficult symptoms Kathryn experienced post Ketamine prohibited her function and clouded our joy. Not so this time and we are so thankful!

We’re so thankful for all we’ve learned and applied this year including both creative and careful protocols during Ketamine, autoimmune patient sensitivity to mold, purified home water, and the use of herbs for detox.

Kathryn returned to school one week post Ketamine with much make-up work already done and very happy to join surprised and welcoming classmates and teachers.

Last week Kathryn was THRILLED to receive 2 college acceptances and is waiting to hear from 2 others. She would love to attend a college close by next year both because she likes local schools and because of her health needs.

A question to our readers: When there is so much bad in the world, can there be a good God? My friend Michael Seifert gave a talk the other day that I encourage you to hear. Grab a cup of coffee, put your feet up and listen. CLICK HERE and know that we love you!

We are ALWAYS thankful for God’s love and help and ALWAYS thankful for your prayers!