From A Statistic To Member Of Our Household

Ostin Pudding

He’s no longer a number…he’s more than a name…he started as a patient…and now he’s one of “our” kids. The statistics are staggering, more than 80% of Hondurans do not have health insurance. Three years and five months ago we first heard the name “Ostin” and learned he was in need of medical attention. At first we helped from a distance…communicating with doctors in San Pedro Sula and sending money to cover the visits and transportation. Next, we were able to meet him and his family in person. We contacted doctors at prestigious hospitals in Boston, listened to their advise about protocol for treatment and forwarded that information on to the doctors in Honduras.

We continued to visit Ostin, reassuring his parents we were still committed to helping. Many months would pass, and eventually we helped obtain a drug from Japan which the doctors in Honduras were able to inject into Ostin. We returned to Honduras and accompanied Ostin and his mother to medical appointments. Initially, the drug seemed to work and Ostin was showing improvement. Months would pass, more injections would be given, and then we would return for another visit. At last, the doctors felt they had done all they could do for Ostin and he would need to go to the States for more treatment.

Many more months passed as we coordinated doctors, hospitals, financing, and visas. Ostin arrived here 10 weeks ago and since then has undergone two big surgeries and other procedures. Once a child moves into your home, he/she is no longer a patient…he/she becomes one of your own. We know his fears, what makes him happy, his favorite foods, the toys he likes to play with. Sometimes it’s a slow process, other times it’s more immediate, but they crawl into your heart.

Having a child living with a serious medical condition is extremely stressful. We try focusing on one medical appointment or procedure to the next, but then there are unpredictable setbacks in his health or unforeseen issues with financing and the feelings of frustration and disappointment escalate.

Loving a child who has no health insurance and has one opportunity to receive medical treatment before returning to his life in poverty adds a whole new dimension…especially when you feel like you’re his voice.

From Toddlers To Teens, Inspired By Others With Lymphatic Malformations

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Last month we returned to Lenox Hill Hospital for Ostin’s second surgery. We had the pleasure of meeting little Nora, who instantly charmed us with her out going personality, adorable smile and abundance of love (blowing kisses to all)! Nora, her mom, Carrie, and grandma joined us in the playroom where we had an opportunity to share “our stories.” Nora is a 16 month old girl who was born with a lymphatic malformation, similar to Ostin’s. It is incredibly comforting to be with children and their families who can relate to your situation, discuss different treatment plans and explain where they are on their journey. Carrie really inspired us with her strong faith, extensive knowledge of this medical condition and great sense of humor! As Carrie describes on her blog,littlelightofminenora.blogspot.com, Nora’s name means “light” and she truly is the light in their loving family.

The month before, we had been sitting in the same playroom, when we had the good fortune of meeting a 16 year old girl, and her father. Her dad inquired about Ostin, wondering what type of diagnosis he had. We knew it was a “safe” environment and he was truly asking out of concern. When I responded, “he has a lymphatic malformation”, he turned to his beautiful daughter, and said, “so does she.” This articulate and poised young lady proceeded to share her experiences in a very factual, easy going manner. She had been born in Mexico and at the time of her birth, her father knew that something was “wrong.” Unfortunately, the doctors denied his insight and no treatment was offered. When she was two years old, the family traveled to the United States where medical care was available, and they settled into their new environment. It’s been a financial struggle for this family of five…the father works two jobs and can only afford health insurance for his children, not for his wife or himself. Yet, he never complained. Receiving medical care for his daughter was his priority, and he knew he was more fortunate than others.

We were grateful they are fluent in Spanish, and left Ostin’s mom, Karla, with them so they could have the opportunity to talk. They learned Karla and Ostin are from Honduras, and living with us while Ostin receives medical treatment. The father told me that Karla has the desire to learn English, and then quietly handed me $50.00, saying, “could you put this towards that?” At first I resisted, but looking in his eyes, I knew this was a gift from his heart.

True example of generosity…the person with the least, offering the most.

This Semana Santa We’re Celebrating Another Miracle

Karla with the doctors

Semana Santa (Holy Week) is a hugely celebrated time in Honduras. Most businesses are closed, transportation is limited and people spend days cooking special foods. Many people head to the water…the beach, the river or a local pool. Just after midnight on Holy Thursday, people gather on the streets of Comayagua with their brightly colored sawdust and cardboard stencils to create the beautiful alfombas (carpets) depicting religious scenes. Just nine hours later, there will be a holy march over the alfombras, marking the stations of the cross in remembrance of Good Friday. On Pascua (Easter), people will celebrate the miracle of Jesus’ resurrection.

This week we will celebrate many of these traditions at our own church. However, our thoughts will also be on the “miracle” of Ostin’s medical treatment and the team providing his care. Under the leadership of, Dr. Milton Waner, “ an internationally recognized pioneer in the development of successful treatments for hemangiomas and vascular anomalies”, he is joined by Dr. Aaron Fay, “a pioneer in the field of orbital surgery and vascular malformations” and Dr. O, “a head and neck surgeon specializing in the surgical treatment of hemangiomas and vascular malformations.” We couldn’t be more fortunate in having been introduced to such a specialized and experienced group which provides world-class care. Please visit http://www.vbiny.org to learn more about The Vascular Birthmark Institute.

Today marks the seventh week since Ostin and Karla arrived to the United States. It has been an amazing experience to watch the physical transformation of Ostin’s face. He arrived with the left side of his face distorted…his eye pushed out of its socket, his cheek and chin line far greater than the right side of his face. After two surgeries and one steroid injection, his eye has been re-positioned into the socket, and the swelling in the cheek has been substantially diminished. This week Ostin’s stitches will be removed and he will receive another steroid injection in the eye. In three weeks, the doctors will address the corner of his mouth and under his jaw which they hope to treat with sclerosing injections.

May you all discover and celebrate your own “miracle” this week.

Back in NYC for Ostin’s Second Operation

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Yesterday, we arrived at The Ronald McDonald House at 9:30 a.m. to pick up Ostin and Karla. Everyone was familiar with the pre-op routine…no food or drink, and keep Ostin as distracted as possible so he wouldn’t obsess about it. He was admitted to Lenox Hill Hospital and we were sent to the pediatric floor where he was assigned a room and given the freedom to play. Later, the crew from Inside Edition arrived to take some pictures and videos. Ostin was shy at first but then took command of the situation…he hid behind his iPad and filmed all the crew, while greeting each one with “hola!” He thoroughly entertained all of us.

We headed to the pre-op room for consents, questionnaires, and monitoring. The whole process went much more smoothly than last time. Once again, Karla walked Ostin into the O.R., and returned in tears…this is the hardest moment for her. She called her husband in Honduras and was able to update him about the operation. He would then share the news with his family and then their church, where they have been lighting candles and constantly praying.

The operation took about 5 1/2 hours, and the doctors explained it was called “a face lift incision” (a surgical line starting from above his ear to bellow his chin). They were able to successfully remove the lymphatic debris. Preserving the facial nerve was especially difficult due to the lymphatic matter being “cemented” around the nerve. Both surgeons were pleased with the results and explained he will return home with a drainage tube (which will remain for up to 4 weeks), his stitches will be removed in 10 days and he will have another procedure in 4 weeks. Ostin and Karla were settled in for the night.

This morning when we arrived Ostin was in a significant amount of pain but just as defiant in taking any medication. He had already ripped out his IV so they were no longer able to administer it that way. One brilliant nurse injected his medicine into a juice box, and with tremendous amounts of coaxing (and bribing), we were able to get the medicine in. This operation was more extensive, covering a larger area and we expect the recuperation to take longer.

Thank you all for your continued support.

“For It Is In Giving That We Receive”

Josue's New Laptop

We’d like to thank the anonymous donor from Pilgrim Congregational Church in Lexington, MA who recently donated a brand new laptop. This morning we delivered the gift to 17 year old “Josue”, who is currently living at The Constitution Inn located in Charlestown. For the past seven months, Josue has been receiving medical treatment (including a prosthetic hand/arm, and a “tissue expansion” in his head) at Shriners Hospitals in Boston and Springfield.

Eleven years ago, Josue’s room in Comayagua, Honduras caught on fire due to poor electrical wiring. He suffered severe burns over much of his body. Since then, he has traveled to the States several times for medical care.

Despite the adversity he has faced, Josue remains very optimistic and has a charming personality. Josue is quite fluent in English and enjoys attending school and working. We couldn’t think of a more deserving person for this generous gift, and seeing Josue’s smile and enthusiastic reaction was just priceless!

Our sincere appreciation for the kindness of others.

The challenges of life with a lymphatic malformation

 

Ostin-Rick

It’s been almost a month since Ostin received his first surgery at Lenox Hospital, in New York City. The surgery and recovery went well, and Ostin was thrilled when the drainage tube was removed and the medications were finished. He was freer to play and became more relaxed and engaging with us, and met new friends, as well.

This past weekend, his eye became more swollen and bruised. Reluctantly, I texted a picture to one of his physicians, not wanting to bother him on a Sunday but concerned he might need immediate attention. The doctor wondered if he had a hemorrhage, and said if the pain was tolerable, he could wait for his scheduled appointment on Tuesday.

As it turned out, it was not a hemorrhage, rather it was lymphatic fluid which had built up. Early this morning, Ostin underwent anesthesia and then the doctor was able to remove 5 cc’s of fluid, and give him steroid injections to the upper and lower eyelids.

Once again, Ostin showed his spirited self…protesting the abstinence of food/liquid before the procedure, and making it known that he wanted to leave the hospital ASAP. He thought he could hasten the process by removing his hospital ID and the IV himself.

Ostin is happy to be back home, snuggled in his bed. The nurse had suggested giving him tylenol but we have learned, he would rather deal with the pain than swallow any medicine. Hopefully, Ostin will continue to make strides in the treatment of his lymphatic malformation. His next surgery is scheduled for March 25th.

 

Welcoming Ostin and Karla

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Ostin and Karla arrived safely to New York City. Although they’re both mobile, we had requested a wheelchair so that someone could help navigate them through immigration and customs in Miami. A couple who happened to meet them in Honduras, escorted them to meet us and handed me a small bag, smiling as she said, “this is all they have.” It didn’t surprise me at all, nor did seeing Ostin in sandals about to face the freezing cold. Part of me admires the simplicity, and how much I over pack every time I travel. But I also know the reality that Ostin does not have sneakers or other footwear, things we often take for granted.

As we headed to the exit, we handed them winter coats, but they didn’t seem too interested. Once we opened the door to the parking garage, the look of shock on Karla’s face was priceless. “Mucho frio” (very cold) as her eyes widened and she gasped in the cold air! She quickly grabbed the jackets and wrapped Ostin in his new quilt. As we opened up the car door, the next cultural adjustment to hit them…a car seat! We quickly learned Ostin is no fan of these and his piercing screams remind us.

Fortunately, it was a short ride to our hotel. I had reserved one room because I didn’t want them to feel afraid and alone, but I did wonder if this was a wise choice as we tried to settle in for the night. The night actually went better than I expected, and before I knew it I woke up hearing Ostin saying, “que es eso?, que es eso?” (what is that, what is that) as he stared out the window. A whole new world before his eyes as he stared at the street in New York City filled with cars, and buses and construction trucks (his favorite). He’d only been in the city for eight hours and was overly stimulated by the sights, sounds, and temperatures. The adventure had begun.

One little boy…one BIG hope for medical care.

Ostin

In November 2011 we were introduced to a 40 day old baby, named “Ostin.” His family knew we assisted with medical cases in Honduras and were desperately pleading for our involvement. Ostin was born with a malformation affecting his face and neck which was so swollen we feared he would suffocate to death if he didn’t receive immediate attention. Fortunately, we have built a close relationship with Peggy Kipps of the Ruth Paz Foundation in San Pedro Sula and she often guides us to trusted physicians. Soon, Ostin was on his way to San Pedro Sula for a physical examination and ultrasound. At that time it was determined he had a lymphangioma  and after consulting with physicians in Boston, the recommended treatment was injections of a drug called “OK-432” which is made in Japan. The Ruth Paz Foundation assisted us in getting this drug shipped to Honduras in January 2012.

At first we were quite optimistic, after a few injections the swelling was reduced by 60%. But then we came to a standstill. The doctors in Honduras changed their diagnosis and began treating Ostin for a hemangioma by using a drug called vincristine. Unfortunately, Ostin did not show any further improvement and the physicians had met their limits and recommended he travel to the United States for medical treatment.

For the past two years we have been presenting Ostin’s case to numerous physicians and hospitals. It’s rather time consuming and requires much persistence,while walking the fine line of “keeping Ostin in the forefront of their minds, and trying not to aggravate them with frequent inquiries.” It’s a challenge emotionally…our hopes rise so high when we have expert physicians interested in helping, who then have to refer us to an array of other departments for review and approval, and then waiting many more months until finally be told the case is not accepted due to lack of funding. Frustrating for us, devastating for our patient’s family.

And then one day in August 2014, we received a call from the Ray Tye Medical Aid Foundation that they had found two physicians willing to operate and the foundation would cover the finances. EXHILARATION! We are in deep gratitude to everyone who is involved with finding treatment for Ostin including: Pilgrim Congregational Church, The Ruth Paz Foundation, The Ray Tye Medical Aid Foundation,  North Shore-LIJ Health System, and all the doctors and staff who have been and will be involved in his care.

Thank you for offering Ostin a brighter future. We look forward to continuing this journey along side him.

Privileged

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This morning I was once again reminded of how privileged I am. We arrived at Logan airport at 4:00 a.m. to send two of our patients (a.k.a. family members) back to Honduras. After waiting in a lengthy line, which included a long wait for people who had over packed their bags and spent 20 minutes shifting items (to avoid the over charge), we arrived at the counter. Once we began checking the children in, the agent told us there would be an additional charge of $150. Although I explained that I had been told at the time of booking of the set rate, she called her supervisor and told us she was following protocol, and we would be charged. I found myself really aggravated but also relieved, knowing I could pull out a credit card and pay.

This isn’t the case for our families in Honduras. When faced with an unexpected expense, they do not have the resources to act immediately. It takes people much more time and rely on many more resources when an emergency arrives. They do not carry credit cards, debit cards or have access to ATM’s. Often times they are caught without their identification cards and therefore are “nameless.” They may be able to “work out the situation”, but more often than not, they can’t in the moment, and will have to return at a later time through much more tribulation. I’m not sure if they experience the same frustration that I do, or if they are more accepting that “it’s just life” as they know it, and nothing comes easily.

Some how, there was a “change of heart” with our ticket agent and the fee was waived. I was grateful to save the money but also to be reminded of how fortunate I am, and aware of how many are not. I hope this feeling stays…

Christmas Throughout The Year

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Christmas is coming…how do you feel? The other day I was asked, “are you stressed by what to buy for Christmas? and I could honestly say, “no.” It’s not that I don’t look forward to buying gifts for my family and friends and watching their reactions when they open the presents (and hopefully like them). I enjoy letting others know I am thinking of them, and they are special to me. But, I also know they are often  just “things” and  last temporarily.

Maybe this feeling is just something that happens as we get older? The days have long since past when I searched the Sears Wish Book and wrote my long list to Santa. Or more significantly, I believe it’s how my experiences in Honduras have enlightened me. Every visit teaches me more about others, as well as, myself.

My daily thoughts drift to my Honduran friends. They have made the greatest impact in my life…the way I think, the way I act and react in different situations, and certainly what I value in my life. I continually catch myself thinking how trivial many things are in my life…”what should I make for dinner?” “which is the better medicine?” “what should I buy someone for Christmas?”

These types of “dilemmas” would never cross the minds of people in Honduras. I certainly shouldn’t think of these situations as stressful and be reminded how fortunate I am…my friends in Honduras couldn’t comprehend these scenarios and certainly would be grateful to be in my position.

My experiences in Honduras are lasting gifts and ones I treasure throughout the year, not just at Christmas time. Thank you to all who continually teach me life changing lessons. Merry Christmas!