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.

 

Witnessing the act of “paying it forward.”

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In 1916, author Lily Hardy Hammond wrote “you don’t pay love back; you pay it forward.” In recent years, the concept of “paying it forward” has become more popular and I love hearing and watching these random acts of kindnesses spread.

This morning we arrived early to church to meet the DeSanto family. Jeanne, the mom, had been in communication with me about purchasing a gift for Ostin. This family is well regarded in our congregation for their kindness, generosity and involvement. Today’s pre-arranged meeting was a personal request on their behalf.

Five years ago, their son Peter was treated for cancer. Jeanne and Mike have vivid memories of the long days spent in the hospital, and during one surgery, a friend sat with them and handed his iPad to them and said, “keep it.” Jeanne recalls leaving ICU, landing on the oncology floor and the surgical team arriving on rounds…”rather than looking at Peter, they were staring at the iPad”. The doctors were in awe of these newly developed instruments, and it became the DeSanto’s “life line.”

There’s nothing like having the support of others who have gone through similar experiences and can truly understand and be helpful. Jeanne has shared her son’s reactions to being poked and prodded by doctors, and can empathize with Ostin and some of the behaviors he’s exhibiting. She knows he’s sensing a loss of control, and can only imagine it’s more difficult with the language barrier and cultural differences.

Today Peter, his brother Charlie and their parents presented their family “fun pack” to Ostin… a backpack filled with coloring books, crayons, games and yes, an iPad! The family was quite excited to have the opportunity to “pay it forward” to  another patient who is facing many more hospitalizations. Peter and Charlie shared their expertise and began showing Ostin how to navigate the iPad. It was pure “magic” for Ostin as he watched Bob the Builder appear on his own private screen, and gleefully yelled “construccion” (construction)!

We’re grateful to the DeSanto family and know this will provide hours of entertainment and also a great educational tool for Ostin, his family and most likely their village.