Monday, June 25, 2012

One in a Million~ A Journey with Parry-Romberg Syndrome

I joked with Tayta after leaving the dermatologist's office in the fall of 2010 that we had always known she was one in a million, but now we had the diagnosis to support our opinion. Tayta smiled and laughed, as she often does, and did, even though she had just been diagnosed with a very rare autoimmune (probably) disease, Parry-Romberg Syndrome, for which there is no known cure. It is estimated that PRS affects one in one million people, though it could very well be that it is more common, but under-diagnosed. Since it took  visits to four dermatologists to receive a diagnosis for Tayta, I think that could be the case.

A short medical history: The onset of Tayta's PRS probably began with she was seven or eight years old; the first manifestation was a slight bluish area of skin on her left chin.  Her PRS progressed so slowly that we hardly noticed it, and it was a friend who encouraged me to take her to a dermatologist. After visits to a few dermatologists, some trials of expensive face creams, blood tests, and a skin biopsy, Tayta was finally introduced to a dermatologist who had heard of PRS and had seen a case or two in her residency many years previous. PRS can only be diagnosed by physical examination, which this dermatologist did.

Tayta's prognosis wasn't dire, nor was it encouraging: PRS affects each person who has it in a variety of ways and to different degrees, most noticeably the wasting or atrophying of the facial tissue on just one side of the face. Though Tayta's PRS was progressing, it was progressing slowly, and thankfully, was mild enough that it hadn't affected the growth of her face's skeletal structure, her jaw/teeth, or her vision. Nor has she experienced any pain. But, her PRS was progressing.

What to do? Though there is no cure for PRS,  there are some treatments which sometimes, though not always, help arrest the disease. Tayta took a mild anti-malarial for a year and a half and the next recommended step was a type of chemotherapy. The conventional wisdom is to wait until the disease arrests itself (though there is no knowing when that will happen) and then attempt reconstructive surgery. 

Since we didn't have a diagnosis until the Fall of 2010, and since some people have never noticed (or commented) the atrophy on Tayta face, we haven't  mentioned it to many people until recently. This past year however, we have been praying for Tayta's healing more earnestly, have asked others to pray for Tayta, and I began a new search  for possible treatment options. 

 I cautiously did another Google search last fall, afraid that the results would be more discouraging news and disturbing images of those who had suffered from more advanced cases of PRS. Instead, the first entry of the search was the The Romberg Connection, a portal of connections and resources for those who suffer from PRS. I believe this was God's perfect timing for Tayta and our family. I had done numerous searches in the years past but had never come across the Romberg Connection. 

I immediately joined the Yahoo email loop, made up of members from around the world who suffer from PRS or who have children who do. I posted an introduction and within hours a couple of parents wrote to recommend that we consider having Tayta seen by Dr. John Siebert, a plastic surgeon at the University of Wisconsin who had performed surgery on their children with great success.

A New Hope
I was very encouraged by what I read: Dr. Siebert had performed a number of innovative and successful surgeries on children with PRS:  he performs a very specialized microvascular free-flap tissue transfer surgery, which he calls an intervention rather than a reconstructive surgery. Instead of simply padding the atrophied facial areas with fat--one form of corrective treatment for PRS--Dr. Siebert takes live, healthy tissue from the patient's body and places it in the atrophied areas, connecting it via its blood vessels.  The healthy tissue "communicates" with the body, and it seems that by this means of intervention the biology of the disease is changed. This isn't officially a cure, but Dr.Siebert has seen a very high success rate of the new tissue living on, healthily, in those who receive this type of tissue transplant, halting any further wasting of facial tissue.

Moving Forward
Last month, just after attending Oldest Daughter's college graduation, we headed to Madison, Wisconsin, to meet and consult Dr. Siebert.  Dear Husband, Tayta, and I were very encouraged by the time we spent with him. He has a wonderful bed-side manner and immediately put us at ease with his knowledgeable comments about Tayta's PRS and explanation of the intervention surgery he recommends and performs. He was even able to identify some tissue atrophy near her nose and left eye that weren't yet visible to us, but when he pointed them out, we could see it and Tayta confirmed that, yes, she could tell the tissue was thinner in those areas. Dr. Seibert  gave us the encouraging news that Tatya's PRS had not affected her skeletal structure, making the reconstruction easier.

one of those clinical photos we've been taking to chronicle Tayta's PRS progress

Based on this consultation, recommendations from other parents, and research of alternative treatments, we decided that we should proceed with scheduling a surgery for Tayta this summer. We began to move forward in faith that God would provide, though not knowing how. Understandably, the costs for such a specialized and lengthy surgery, requiring a 3-5 day hospital stay, would be high. We still don't have all the numbers, but we are already experiencing God's hand of provision for Tayta and our family: on June 1st, our employer changed to a more comprehensive insurance policy. One inquiry from Dr. Siebert's administrative assistant yielded this good news: Both the physician and the hospital are in network (I've come to understand the importance of the phrase!) and the insurance company approved her surgery! (!!)

The Surgery
We are praying for a July 5 surgery date for Tayta, but won't know if there is an available operating room until June 28th or so. If she doesn't get this date, the surgery will be scheduled for August 15, preventing me from accompanying Artist Son and Dear Husband to take Artist Son to college.

Tayta and I will be in Madison for about 10 days once we travel.  The surgery will take approximately eight hours and Tayta will stay in the hospital for 3-5 days. We'll remain in Madison for several additional days for Tayta's post-operation examination. Tayta will need to have a minor revision, or "fine-tuning" surgery, anytime six months after her first surgery so that Dr. Seibert can correct the atrophy of her bottom left lip and smooth out any other areas which require it.

Please Pray
Please join us in praying for Tayta:
  • Thank God for all the good care he has provided for Tayta and for the good insurance coverage we have recently received.
  • Please pray for July 5 surgery date. I would sure like to accompany Artist Son to college, something Dear Husband and I have done, together, for our other two college kids.
  • Please pray for a successful surgery, and a good recovery for Tayta
I'll post an update when we get a surgery date.

So, what does Tayta think about all this?
Well, since I'm writing this, you'll hear my take on what Tayta thinks. The smile in the picture above is one that those of you who know Tayta are familiar with. She smiles broadly and confidently, and it is her joy to bring a smiles to the faces others. She was sad that she would be loosing her dimple, until she realized that it was caused by PRS. She also told me that if she knew her PRS would arrest at this point, she wouldn't feel the need for corrective surgery. However, her PRS continues to progress, so she agrees with us that surgery seems to be the best treatment option at this time.

Thank you for reading this far and for your care and concern for Tayta. Many of you have already prayed for her and I hope you were encouraged to read of how God has worked through your prayers. 

Monday, June 18, 2012


Just a week after celebrating Artist Son's graduation from high school, we packed our bags and headed to Oberlin, Ohio, to celebrate Oldest's daughter's graduation from college; we had so much to celebrate and thank God for!

The celebrating anew began when we arrived in Chicago, the day before we drove to Oberlin. Checking email, I had a message from Oldest Daughter, "Call me--I have big news!". We did and she did:  just that day she received a phone call notifying her that she had been awarded a Graduate Arts Award by the Jack Kent Cooke Foundation, a merit and needs based scholarship that will provide the remaining money she needs for tuition and living expenses for the next two years of graduate school. She had applied for this scholarship in January, not really expecting to to receive it, and hadn't heard anything about it until that day, May 24. Amazing! Praise God! I think I must have repeated those two phrases at least a dozen times that evening. We had been asking God to provide for Oldest Daughter's graduate studies but had know idea how generously he would do so.

On to Oberlin, where we looked forward to celebrating the reunion of family. We had not seen Oldest Daughter and Active Son, who was flying in from Boise, since January, and then there were my parents arriving by car, who we hadn't seen since January 2011. Dear Husband's brother and his wife and daughter also drove up from Illinois to celebrate the graduation weekend with us.

My Dad celebrated his 73 birthday the day before graduation, and though we didn't have much planned for his day, we happily discovered that the graffiti rock in Tapan Square happened to be painted with just the right greeting.

Four years ago, Oldest Daughter and I visited Oberlin so that Oldest Daughter, in pursuit of a conservatory admission could audition. All the schools she auditioned for had good things to offer, but I favored Oberlin for it's charming situation, engaged students, and encouraging faculty.  My favorite hang-out just short-block from the Con(servatory), was the Ben Franklin 5-10. I had to explain to my kids what a 5 and 10 was.

My favorite corner third of Ben Franklin's was the third which housed Mindfair Books. I enjoyed introducing my favorite haunt to Artist Son and and Tayta, who both found interesting books: a volume of Anne Bradstreet poetry for Tayta and a small paperback on art history for Artist Son.

The rest of the weekend was a celebration of friendship, accomplishment, good endings, and new beginnings.

I love this picture of Oldest Daughter with her good friend and partner in violin adventures, and their beloved teacher and mentor, Milan Vitek. It is his conscientious and caring instruction which made Oldest Daughter's experience at Oberlin as rich as it was. I know she will be forever grateful to him, and thus, so am I.

And since we were at Oberlin, celebration included lots of good music, from jazz groups playing in front of coffee shops, to quartet rehearsals, to solo recitals, to the grand finale, a commencement orchestra performance in Finney Chapel. Oberlin has taken a decidedly secular turn since the days of of its founding by Charles Finney during America's Second Great Awakening, but this plaque, dedicating Finney Chapel, now a premier performance hall with a magnificent organ still hangs in the center of the foyer.

A quartet of friends

One last orchestra rehearsal with a wonderful conductor 

A standing ovation performance by the Oberlin commencement orchestra

(Oldest Daughter, second stand, inside.)

And in the hot sunny morning of Memorial Day, Oldest Daughter received her diploma, indicating that she has earned a Bachelors of Music in Violin Performance. Graduation gowns are optional for Oberlin graduates and I estimate that less than half were wearing them. A few more wore just their caps and tassels with regular clothes. One young man had braided his tassel into his hair like a hair extension. Clever. I had walked up to the line of graduates to clap for Oldest Daughter when they paraded  in but stayed to watch all the students enter as it was so interesting to see what they had chosen to wear for this special day.

Oldest Daughter with her cousin and aunt and uncle who drove up from Illinois

Oldest Daughter with Grandpa and Grandma

But how to get a family shot after our other family had left the graduation? My idea was to look for someone with a nice camera, hoping that meant the owner knew a little about taking pictures. The picture above is evidence that man-with-nice-camera-around-his-neck does not necessarily equal good-photographer. He held our camera at his waist and just started clicking. We politely thanked him and without even looking at the pictures, asked another young lady standing nearby to take our picture. She did much better. 

Our happy family, grateful for God's faithfulness to Oldest Daughter, and for his provision so that we could all be with her to celebrate this grand occasion.

After spending a month in Boise, where her family is enjoying spending time with her, Oldest Daughter will return to Oberlin for a few weeks of to be a counselor at Credo, a faith-based music festival. Then, she will move to Evanston to attend graduate school. She will be pursing her Master of Music in Violin Performance, and will be studying with the highly esteemed Almita Vamos in the Bienen School of Music at Northwestern University.

Well done, Oldest Daughter! To God be the glory!

Thursday, June 14, 2012

On the Edge of the Nest

When I was a child I attended a church with a wonderful Children's Pastor. I still remember a story which my pastor told, yea acted out, about a mother eagle preparing her eaglet, comfortable as he was, to leave the nest and learn to fly. The mother eagle wisely placed small poky and prickly objects in the bed of the cozy nest, which would prompt the eaglet forward, to the edge of the nest, making him more willing and desirous of learning to fly. The story, hilariously portrayed by my pastor, a man of about 6'5", flapping his arms/wings in terror, as the eaglet learning to fly, was a metaphor for the spiritual truth of the way God often works to lead his children on the next step of the journey that he is preparing for them, prompting them forward out of the soft, comfortable place they've grown accustomed to. I have recalled this story a couple of times during the past school year, Artist Son's senior year and last year in Jordan. As I've mentioned, this has been a year of transition as we've relocated from Amman to Mafraq. Significant about the timing of this transition is that it came just as Artist Son began his senior year of high school. What's a seventeen year old guy to do when his parents move him from the bustling capital city in which he's always lived, to the dusty, sleepy, desert town of Mafraq? Jesus' words in the Gospel of Matthew comes to mind:

Seek first the kingdom of God and his righteousness and all these things will be added to you. 
Matthew 6:33 (English Standard Translation)

This was Artist Son's response to the preparatory challenge God put in his path and it filled my mother's heart with joy to see God pour out his faithfulness and blessing on Artist Son as he lovingly prompted him along, placing just the right poky objects in his soft nest to prepare him for the next step of his journey.


Artist Son didn't normally play his drums in the desert, but as soon as we arrived in Mafraq and visited the evangelical church in town, he was recruited to play in the worship band, which until at that point, was lacking(and desiring) a drummer. Arrangements and rehearsals were handled in Arabic, challenging Artist Son to stretch and flex his atrophied Arabic muscles.

photo credit, Tayta

Moving to Mafraq also provided Artist Son with some meaningful content for his art. His AP Studio Art 2D Design Concentration portfolio theme was a juxtaposition of works focusing on his interaction and feelings of alienation in a foreign culture with his experiences of learning in the context of home and family. Below are a few of my favorite pieces.

The first two were initial sketches that Artist Son's teachers instructed him to "leave almost as they are"-- instant finals. That was unnerving to Artist Son as he is used to, and enjoys, adding painstaking detail to his finals. But he was behind schedule, so five sketches completed in one inspired day, turned into finals with only some minor additions, was a sweet deal for him. 

I love the movement in this first sketch.  It portrays Artist Son walking through the bus station, a new experience for him as he learned to travel between Amman and Mafraq by public bus. I like the movement it shows. His head was left blank to give a sort of Invisible Man effect.

This sketch-turned final has a sort of Pilgrim's Progress theme, showing Artist Son carrying words of Truth to guide him. Others Truth-bearers walk forward and one, without Truth, walks backward.

This was Artist's Son's final piece and portrays him learning, pondering, considering, in our home, particularly in our kitchen, a favorite place of study. I make my first cameo experience in Artist Son's art--my back side, but I'll take it as his teacher instructed him to make me the visual focal point of this work. The hands are symbolically grasping for seeds of truth.

I wish you could see this ink-wash in person. The hands, reaching heavenward to receive truth, have up to ten layers of ink-wash shading. The figures in backround do not know true life.

Antother sweet ending took place on the baseball field, as Artist Son, after a two-year hiatus from pitching due to an injured elbow, finished the his last four games in Amman Little League with some very nice pitching. He worked hard all season,conditioning and preparing so that he could take the mound for those final games.

photo credit, Tayta

So busy was Artist Son during our final weeks in Amman that we had to implore him to take a one hour break  from his studies so that we could shoot his senior pictures. He combed his hair (I think), grabbed an extra shirt, and he, Tayta, and I headed off to Um Al'Jimal, ruins of a Byzantine city just 15 minutes from our home, for a quick, and we prayed, successful photo shoot.

photo credit, Tayta


Artist Son and I were talking in the kitchen a week or so before we left Jordan, and he commented that he was "on the edge of the nest." Yes, and I think he's ready to fly.

Post Script: Artist Son will attend Gordon College in Wenham, Massachusetts, as an A.J.Gordon Scholar and art major.