Amazing friends and family!
Muchos salduos to you all from Guatemala on this beautiful Saturday afternoon. I hope you are all well and wonderful and enjoying your weekend.
As you know, yesterday Glenda had her appointment with maxillofacial surgery expert, Dr. Roman Carlos at the Hermano Pedro hospital in Antigua, thanks to our friends at Faith in Practice. It was an incredibly revealing appointment, and it has taken me a little while to process all that Glenda and I learned about her condition and our potential options going forward.
The journey in itself was a remarkable one for what it meant to Glenda and me.
When I first met Glenda in May of 2013, she was a small presence in the world around her. Quiet and reserved, her eyes were ever downcast. Her father confided in me her battle to face each day – that she never left the house, had little or no prospects for work, friendships, or marriage. She had even expressed a resignation for life itself, saying “solo quiero morir, papa, solo dejame a morir.” I remember taking her with me to sit and watch the parade at the Feria de Chiantla last fall, pointing to the children in brightly-colored costumes of paper maché and homemade pinwheels on plastic straws, asking her about the parades of years past. She told me she didn’t usually attend, choosing to stay at home while the rest of the family set out. She couldn’t stand the way people stared, their faces twisted in morbid fascination, oblivious to the human beneath the port wine-colored mask.
I could empathize to an extent – being the only Caucasian in the region, I have been stared at, pointed at, laughed at, whispered about. Hell, I even made a little kid cry once just by smiling at him. But I have ever the foundational knowledge that there are millions of people who look like me all over the world, that back where I come from I am “normal,” and that the ogling is generally more out of curiosity, rather than grotesque captivation. My heart hurt for her.
But as our adventures began together, and as Christ began to work in her heart and those of the people we encountered on the journey, Glenda began to renew. After our trip to Honduras – and even more so after the birth of her first child, Daniel Isaiahs in July – Glenda began to unfold like a frost-encrusted blossom hit by the first rays of spring sunshine. She began to talk to me, to smile, to ask questions. She is assertive, attentive, and doting on Daniel – who may be the only person who can gaze upon her with unconditional and unaffected love and adoration without his eyes sliding involuntarily over the raised hemogioma on her face, even if just for a second.
Almost a year later, Glenda is a different person, and – I believe – the incredible young woman God intended her to be. In Antigua, I was blessed with a glimpse of that person. Even after our 6 hour trip down from Chiantla, Glenda was eager to get out and explore the beautiful colonial city. I remember we were headed down towards Parque Central from the hotel and rounded a corner on to one of the avenues that faces the magnificent, looming slopes of the volcano Agua, which stands like a mighty, green guardian over the cobblestone streets of the city – Glenda, upon catching sight of the majestic mountain ahead, took a small step back, catching her breath, and smiled.
Our afternoon exploring was fantastic. We went by the Chocolate Museum, and Glenda was thrilled – passing around all the different exhibits and asking me to explain to her how chocolate was made. I had never seen her exhibit such engagement or curiosity – and it filled my soul to bursting with joy and camaraderie. We sat in the lovely courtyard behind the museum and drank hot chocolate, letting Daniel try some for the first time, which was absolutely precious. We talked about the beautiful, vibrantly patterned güipiles for sale by the Mayan women by the stone fountain and about our favorite foods. We then took on the rest of the city, strolling through Parque Central under flowering trees and listening to a live band play music, climbing up into the ruins of La Merced church to see the famous fountain housed there, sitting under palm trees by the communal pilas and watching Fuego spew ash into a golden sunset. The most striking and wonderful moment for me was when Glenda asked me to take her and Daniel’s picture. Gone was the girl who had hid her face under a blanket on the bus ride to Honduras, the girl who would run her hand conscientiously over the lump on her cheek whenever we walked anywhere in public, who was afraid to voice her opinions. When I showed her the photo of her and her baby boy in the park, she smiled to herself.
That night we ate crepes for dinner. Glenda had never tried pancakes, let alone heard of the strange, thin French version. Over dinner, she gave Daniel sips of her limeade, and watching his face as he discovered the surprises and pleasures of sweet and sour was just darling. Our two young waiters were quite taken with him, and I downright loved watching Glenda get to introduce her pride and joy to adoring fans. The restaurant ended up giving us our dinner for free. I almost cried.
We woke up early the next morning to head to the hospital, where we joined dozens of other people in the hustle of the disordered lines that plague any public healthcare system, particularly in developing countries. The hallways were packed with the ill and infirm, displaying a broad array of maladies and conditions, many of which I could only imagine attempting to live with in a country where there is just so little support for disability and misfortune. We waited several hours before we could be seen – an inconvenience that would spark indignity in us Westerners, but a circumstance that is simply a part of any given public service sector in the third world.
Dr. Carlos has seen a number of Sturge-Weber syndrome cases like Glenda’s before, and in fact, that morning there was another young man waiting in line with us in the Orthopedic Clinic. That, in itself, was something of a marvelous moment for Glenda. It was the first time she had ever seen anyone else in with a similar condition to hers – the first time she had realized that she was not alone in this boat. I like to believe that was something of encouragement and consolation for her. As C.S. Lewis once wrote, “Friendship is born at that moment when one man says to another: ‘What! You too? I thought that no one but myself . . .”’”
I have still not yet decided what I make of the doctor. Assertive and confident, he does many good works for his people – spending every Friday here at the public hospital to provide care and treatment to those who could not otherwise afford the regular price tag. His manner was … unique. He began by immediately telling me that the copies of the scans of Glenda’s malformation that I had brought from our previous appointments were “useless” and he wouldn’t let me complete a single sentence in trying to explain our circumstances. He went on a short rant about how so many American doctors come down from the States with good intentions but terrible practices – making promises they can’t keep and not ever truly understanding the systemic needs of the Guatemalan people. He told me that much of the treatment options we had discussed with the doctors from the Austin Smiles team in November were “lies” and that, blatantly, there was “no cure in the world” for a Sturge-Weber vascular malformation.
I was taken aback. I could see Glenda deflating before my eyes. While no doctor we’d seen had made any promises, and while we already knew that it is impossible to ever completely remove a vascular malformation like Glenda’s, we had certainly come to hope for – at least – improvements. Dr. Carlos shot down the idea of cauterizing the veins feeding the tumor to reduce its size, saying the body would simply redirect blood flow through others and that it would return to size. He declared again and again that there was no surgery to significantly remove the offensive tissue, and kept challenging me to try and find someone who could do it, calling it an unnecessary risk and expense.
While an honest and realistic prognosis was unarguably vital and important in our quest, I wasn’t particularly crazy about Dr. Carlos’s delivery, nor could I completely believe everything he was saying. I will be the first to grant that I am no doctor and have no idea what I’m talking about, but the research I have done on Glenda’s condition and the thoughts shared by other doctors makes believe that there is something that can be done to at least reduce the tumor – though not remove it completely. I will continue to look into this and work with any doctors that are willing to see what our options are.
However, Dr. Carlos also had some really good news to share. When I first met Glenda, she and her family had been extremely concerned about the malformation because it had been growing larger and had begun to take over more of her mouth. We all feared that it would continue to grow, and eventually inhibit her ability to take in food. Dr. Carlos informed us, though, that the growth of the tumor had been spurred by Glenda’s pregnancy – which would have begun around November of 2012 – and currently by the fact that she is breastfeeding Daniel, as the condition is always exacerbated by hormone inducement. He assured us that it would not continue to grow, and would, in fact, shrink down back to its original size about 3 weeks after she stops breastfeeding. This was, obviously, very welcome news.
But Sturge-Weber syndrome does create a risk of glycoma (and therefore seizures) due to a buildup of the vascular tissue in the brain, and we were recommended to see a radiologist as soon as possible to check for angiomas.
He also informed us that we could, indeed, reduce the tissue of the tumor a little bit, as well as provide a topical medication that would diminish the veins feeding the malformation and shrink it back, but only by about 15% maximum. I know that Glenda envisions that whole thing gone completely, and to hear just 15% was not what she – or I, to be honest – were hoping for. Still, that would be something – particularly in regards to allowing Glenda to eat more normally and to reducing the throbbing pain the tumor sometimes gives her.
Most of all, Dr. Carlos did seem genuinely compassionate and interested in helping Glenda. He gave Glenda a load of a special mouthwash that will help ensure healthy gums and teeth, as the tumor prevents her from brushing or flossing. He set another appointment for us in June, for a follow-up once Glenda is able to stop breastfeeding. He said a surgeon could perform the operation there in the hospital as soon as August, if Glenda was determined to try it and we could get together the funds. If this treatment was really the most that could be done and Glenda’s best option, it would negate our need to travel to the States, which could be huge. We will have to have a good pray about it, and a sit-down with her and her family, in order to decide.
We left the hospital in something of a hurry to catch a bus, wanting to make the 6-hour trip back up to Huehue and arrive before dark, as Glenda lives a ways outside of the village and we didn’t want to miss the last micro that could take her up to her home. We had little time to absorb or discuss all that we had learned, and the loud, rattling tin can of the chicken bus was hardly space for processing. We both sat mostly in silence on the trip back up, thoughts and information swirling around the inside of my head like angry ants in a mound that’s just been trampled on. I am doing my best to trust everything to God and to find peace. He has already worked great miracles in both Glenda’s life and mine, and I know He will continue to guide us through whatever the next steps may be.
Thank you all so incredibly much for your continued support, prayers, love, and compassion. You have really made all the difference for us both. We will continue to update everyone as this odessey unfolds! Muchos abrazos fuertes de Guatemala, and have a brilliant week ahead.