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Help Jorge Luque Fight Cancer

$30,664 of $30,000 goal

Raised by 298 people in 3 months
Created April 6, 2018
Imagine searching your whole life for meaning and a deeper purpose.  Imagine you find it in more ways than one.  You discover that God is calling you to serve him as a priest in the Orthodox Christian church and has, along the way, introduced you to a woman with whom to share this incredible journey!  A woman who has the same hopes and who has been waiting for you all of her life! You fit together beautifully in Christ's love and begin planning a life together.  Imagine you learn that you have a very aggressive form of cancer.  Imagine making sense of all the blessings paired with this awful news!

Please read Jorge's story of discouragement, hope, despair, and determination.  Please be a part of his hope, his blessing, and his healing. 

 
Jorge Luque Martin came from Spain 2 years ago to study for the priesthood at Holy Trinity Orthodox Seminary in Jordanville, New York.  After two months there, he began suffering intense headaches and double vision with added blurriness.  To ease the pain, he could only find rest and sleep by sitting upright on a couch in the lounge of his dorm.  After 2 weeks, the abbot insisted he go to the hospital.  When it was clear to the nurses that he was having trouble filling out the intake forms, since he was not able to write his name due to the double vision, a mass in his brain was immediately suspected. Pain meds helped him get some rest that night. An MRI the following morning revealed that a tumor was surrounding the pituitary gland.

The following week, surgeons removed the rather large tumor in pieces through the nose.  The tissue of the tumor was “dead,” and the pathology of the biopsy was not sufficient to determine if it was a benign tumor or a cancer.  The neurosurgeon thought that in all likelihood it was a benign tumor.  Jorge was excited to return to normalcy, resuming his rigorous schedule of classes the next day after being discharged from the hospital, as well as church services, (at 6am every day,) and work . Right after his release, the Hawaiian Iveron Icon was at Jordanville and Jorge was blessed by venerating it.

At seminary, he was the happiest so far in his life and was determined to continue recovering, despite the fact he still suffered from a crossed eye and no peripheral vision.  Simple tasks like picking up a cup or pouring coffee proved difficult, so Jorge got creative and kept only one eye open.  As a result, he had no depth perception and fell more easily.  After a neurosurgeon and an ophthalmologist told him he would probably not regain normal sight, Jorge felt depressed and exhausted.

Other first year seminarians were planning a 6 hour road trip to New Jersey, and although Jorge was not feeling up to it, he joined them, not knowing a great blessing awaited him.  When they arrived, the Hawaiian Iveron icon was there, readily streaming myrrh from even the case.  He was thankful to venerate it again.  At lunch, a priest-monk looked at him and said, “You don’t know yet, but you will see that you are going to get a huge blessing from this trip.”

Less than 2 weeks later, Jorge travelled by train to his Wisconsin home parish for Christmas break.  While on the train, his eyes suddenly began seeing normally and were no longer crossed.  Glory to God!

However, just 1 ½ months after the surgery, Jorge began feeling pain in the tip of his nose.  The pain grew to an excruciating level when touched.  The pain was extremely intense and increased its coverage to the sinuses and head, causing a recurrence of headaches.  Jorge battled through the pain, not telling anyone, and finished his first year.

That summer, while at home with his Wisconsin family, a lump appeared on the nostril through which they had extracted the pituitary tumor.  Jorge continued the gardening work which he found was a good distraction from the pain.  Between strenuous gardening and pain meds, he was able to ignore the difficulties a little.  He visited some free clinics that told him he had either a serious sinus infection or MERSA and merely prescribed him antibiotics.  He was convinced the new growth was just a cyst.

On his return to Jordanville, he detoured through Indianapolis to meet a nice girl his godfather had told him about.  It was a short but sweet visit.  He thought Stefanida may just be the person he had waited for his whole life.  He was right.  But that’s another story.

When he reached Jordanville to begin his second year of studies, Jorge made an appointment with his ear, nose and throat (ENT) doctor to get to the bottom of his new problems.  The ENT took a biopsy and at first glance was leaning toward a cancer diagnosis.  While waiting for confirmation, Jorge drove to Indianapolis to see Stefanida and fell in love. This visit bolstered his courage to endure the next trial.

A couple weeks later, Stefanida and her father drove to New York to be with him at his follow up appointment at which they learned it was indeed cancer.  Another 2 weeks later, Jorge underwent 8 hours of surgery to remove part of his nose.  Two weeks after that a 12 hour surgery to reconstruct his nose was done, using blood vessels and skin from an arm, skin from a leg, and bone from one of his ribs. 

Despite all this, Jorge decided to finish his first semester.

In January of this year, after doctors took a closer look at his pathology slides, his ENT called with news that there was a 50-100% chance the cancer would return and could be fatal.  In February, the cancer did reappear and seems to be growing quickly.  He is scared because the doctors so far have told him that the only course of action would be to remove his nose and then do radiation (which in that location has many lifelong consequences).  If he loses his nose he will no longer be able to be a priest.  He is looking for a way out of this long trial, a way to fulfill the vocation that he is called to.

Jorge and Stefanida (now fiancée) are seeking a second opinion at Mayo Clinic April 17th. This is a huge financial challenge as Jorge is an international student without health coverage, and even the most routine scans for his situation cost $5,000 to $10,000, and the initial consultation with multiple specialists costs $5,000.

Will you please help us help him?  Your prayers and monetary donations will be greatly appreciated by all who love Jorge and are touched by knowing him.

Offline donations may be by check mailed to:
     Elizabeth Kulp
     18426 Chezik Road
     Blue River, Wisconsin  53518

Please also consider sharing this page via social media so that we can spread the word further. Thanks!
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The latest from Stefanida:

Just a quick note as we're in the middle of the hundreds of details of wedding preparation, and also the joy of impending arrival of family and friends for the celebration.

The doctor is quite certain that the lump on Jorge's lip is not cancer but rather something that grew up around one of the partially-dissolved stitches. He'll do a biopsy when we get back in town after the wedding, but more as a precaution than because he thinks there's an actual need to do one.

The prosthesis is having difficulties. The doctor has been working on it for weeks, and is repeatedly having problems with 3-d printing the mold. Today he had Jorge come in to make a mold of his face so that if need be he (the doctor) could to a manual sculpt of a prosthesis, but he's still trying to use the computerized version. Since it seems to clearly be a problem with the printer, after many attempts with it, he's going to try to get access to another printer on the university campus. He's never had this level of difficulty making a prosthesis before.

Please pray that all goes smoothly and Jorge has a prosthesis by Sunday!

If making the prosthesis goes well Jorge will spend many hours at the dental school (where the prosthesis is being made) between now and then, as they work to fit and then color the prosthesis to match his skin.

I'll give you an update on radiation later, after the wedding, since that's a more involved topic.

with love,

Stefanida and Jorge

P.S. The doctor just messaged that he's gotten permission to use a different printer and is in the process of printing the mold, which would take 14 hours. Please pray that it all goes well!
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Dear Friends,

I haven’t had anything to update you with on the medical front for a little while. The main focus has been preparing for the wedding, with things like Jorge looking for a new car to replace the one damaged in the accident, thrown in.

The doctor that’s working on Jorge’s prosthesis has been having some trouble getting the mold for it to print on their 3-d printer, but assures him it will be ready for the wedding. We assume we’ll meet with him in the coming week.

On Tuesday we have a radiation oncology appointment. This will be a big deal, as it’s the first time we’ve met with the radiation oncologist here in Indianapolis to see what his specific plan would be for the radiation, and then Jorge will have to decide what course he’s going to pursue (whether to do the radiation or not), and face serious consequences, like loss of his taste and smell and sickness from the radiation just as he’s starting to feel better if he does do it; or the serious risk of the cancer returning if he doesn’t. Prayers are appreciated!

Thanks to the great generosity of so many of you, and others, we've been able to meet the medical bills that have arisen so far, and the other expenses that have come up, since Jorge has not been able to work in over a year. Recently a new expense came up. I was talking to the relevant person about paying it, and a little discouraged because it was a noticeable amount of money. Then I came home and saw a note from Jorge, who was in Wisconsin at the time, that we'd just gotten another $2200, more than enough to cover the new expense. I felt like God was reassuring me that He really was taking care of us. Jorge does want you to know, though, that at this point we are using the money for living expenses as well as for medical bills.

In other news, a few weeks ago we drove to Missouri and spent a few days at Archangel Michael Skete with the monastics there, to have a crash course in marriage preparation with Fr. Alexii. It was a very blessed couple of days, and on one of them we also drove up to a nearby Catholic monastery that has hundreds of relics. Among many others we venerated small pieces of the relics of Sts. Joachim and Anna, which felt like a real blessing for our upcoming marriage.

My mother and I are making my wedding dress. I’d include a picture of its current half-formed state, but then Jorge would see it… We tease him by drawing pictures of the dress, every one different and every one preposterous, and of course, by keeping him firmly out of the room where we’re making it.

Love in Christ,

Stefanida and Jorge
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EXCITING NEWS from Stefanida and Jorge!!!

Jorge and I have decided to go ahead and get married on our originally planned wedding date, July 15th! It is crazy to do in the midst of all the medical stuff, and crazy to plan a wedding in that amount of time, but it does seem like the right thing. Please pray for our life together! If any of you would like to come to the wedding, we would love to see you. Just let us know, so we can have a more-or-less accurate head count (luquewedding@gmail.com). We have felt so loved and supported by all of you.
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Dear Friends,

It’s been a long time since I wrote! Almost nothing was happening for much of that time, but things are moving again.

Jorge only stayed in the hospital overnight. Since then he’s been back at “home,” that is, staying with the Walkers and spending the day over here at the house where I’m living. It’s been a relatively uneventful convalescence. The pain has been sticking around longer than we expected or than it did with the last cancer removal surgery, and it has been very frustrating waiting for the doctors to be in touch with us and let us know the next steps, but the pain has decreased a lot from where it was, and he’s regaining some of his strength.

We heard from the doctor on Wednesday that the final analysis from the lab showed that all the margins are clean. In other words, the edges of skin that they removed around the tumor are cancer-free; they’ve successfully removed the tumor, and don’t have to go back and take more out. That’s very good, and the also thinks that it won’t be necessary to go in and remove the lymph nodes in Jorge’s neck, which had been a possibility (although doing that surgery might be a preferable option to doing radiation in that area; we don’t know yet).

On Friday we finally had our first post-surgery appointment with the surgeon, and also met extensively with the prosthedontist. The combined appointment was over four hours long (!), and a real challenge emotionally, although it certainly also had it’s interesting side (as we learned about the process of making a prosthesis).

The oncology surgeon removed the dressing over the surgery site, and Jorge and I both saw what it looks like for the first time. In case anyone wasn’t clear on it, they removed his entire nose except for a small amount of skin on the left side, and also removed part of the skin on the upper lip, where the cancer was encroaching. The tragedy of him losing his nose came home to us much more viscerally, seeing it like that.

We next met with the prosthedontist, who explained the process of getting a prosthesis and answered questions at length, and then did a digital scan of Jorge’s face.

Here are some main points from that conversation.
The first prosthesis will be a temporary, less precise one, to last through healing and radiation. After that Jorge’s skin surrounding the site will have healed and settled enough that they can begin working on a longer-term replacement nose.

Prosthetic noses have a relatively short life-span. They last a year and a half to two years, or three at most. Thus the process of getting prostheses looks like it will be an ongoing part of our lives.

The first choice for holding on a prosthesis like this is medical-grade glue. It is good quality and has never irritated the skin of anyone the doctor has worked with. For some people, for example with oily skin, the glue may not work that well; another option is surgically implanted magnets, to which the prosthetic attaches. The process of implanting the magnets does not always work (the body can reject them, for example), and it can’t be used if the person has had much radiation in that area because the bone is no longer healthy enough and implanting magnets risks necrosis.

People normally wear a prosthesis either during the whole day (but not at night), or just when they leave the house. There are a number of questions we still don’t have answered, especially related to the functions of the nose: how do you sneeze or blow your nose with a prosthesis, etc.

These types of prosthetics are still usually made by hand, exactly like a sculpture: the doctor takes a physical impression of the patient’s face, uses that to make a positive relief of the face, and then uses wax to sculpt a nose onto that surface. Later the shaped wax is used to make a mold. However, this doctor has created a program using volunteers from relevant departments of the university, hospital, and dental school, and is making the mold for the prosthetics digitally. He first scans the face with a digital scanner; works to create a model of the prosthesis on the computer; prints the mold for it on a 3-d printer, and finally creates the prosthesis from that mold. He hopes to have the temporary prosthesis finished in early July.

In other notes from the overall appointment, the surgeon is planning to set up our initial appointment with the radiation oncologist to begin discussing radiation. In theory, that would begin sometime in July, but first we have to find out what they are proposing, and make relevant decisions.

Jorge is really suffering from having no nose, and me alongside him, so please pray for us! I know God is with us, and that we will learn and grow a tremendous amount from all this. As we are in the midst of the grief and processing, your prayers are a tremendous help. Thank you!

Love in Christ,
Stefanida and Jorge
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$30,664 of $30,000 goal

Raised by 298 people in 3 months
Created April 6, 2018
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