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.

Thanksgiving Bounty From Lawrence Academy

Lawrence Academy Donations

Esperanza-Hope for the Children, Inc., would like to extend our appreciation to the Lawrence Academy community for your recent donation of clothing, school supplies, toiletries, over the counter medications, and craft supplies to our non-profit organization. We are especially grateful to your Community Service Club for endorsing this project and for the two student volunteers, Jillian Clymer and Elizabeth Morrison, who spearheaded the collection.

Honduras has never been in greater need of assistance. We recently returned from a three week visit to the village of Flores and found their health center (Centro de Salud) in dire need of medications and supplies. The donations from Lawrence Academy included pain relievers, cough medicine, band aids, gauze dressings, anti-fungal and antibiotic creams which were all greatly appreciated, and essential in providing treatment.

Students were thrilled to receive pens, colored pencils, crayons and rulers. Often times families can’t afford these materials and therefore their children can’t attend school.

Esperanza would like to offer our thanks to each and everyone of you who enable us in helping one child at a time. Happy Thanksgiving!

Easter Blessings

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Recently, we returned from 18 days in Honduras. During our stay, we were introduced to new patients including a young woman, “Katherine”, who visited us with her foster mother. She had moved from her home because her mother suffers from severe mental illness and it was an unhealthy environment. Katherine’s symptoms included severe headaches, blurred vision and a deep fear “she was going crazy.” Tom took a medical history, did an eye exam and spoke with a neurologist we had recently met in Comayagua. He arranged for an appointment the next day, and also found a trustworthy place to perform a CT scan.

Thankfully, the neurologist agreed with Tom’s initial assessment, Katherine was suffering from migranes, and although they can be incapacitating, it wasn’t what she truly feared, or anything life threatening. The day after Katherine’s medical exams were completed, we received the letter below which was kindly translated by Esperanza supporter, Ursula Millard.

Dear Doctor and his Wife,

I am very grateful for what you have done for me. I cannot pay for it, but I know that God will bless you wherever you go because you do something very special. Thank you, thank you, and thank you very much. I know that God brought you to my life, and you have been such a blessing. I wish you the best always. I will always remember you. You are people with a great heart and I know that God will always be with you and will make you stronger. With the blood of Christ bless you always. Thank you. I appreciate it with all my heart. I love you very much.

If God is with you nothing can harm you.

Do not be afraid nor give up because The Lord is with you.

I love you a lot. I love you a lot.

Katherine Ramos

As we celebrate Easter today, we are reminded of the many blessings in our lives. Receiving Katherine’s letter was quite humbling and once again we realize the gifts we receive from others far outweighs the efforts we make.

Honduras through the eyes of its children

Our Journey for Hope is putting on a photo exhibit with all proceeds going to Esperanza – Hope For The Children, Inc. The photos being showcased were all taken by children in Honduras, many of whom had never held a camera in their life. The event is next Friday, March 8th, at 6:30pm at Reasons to be Cheerful (110 Commonwealth Ave, Concord, MA). Hope to see you there!

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Children’s Photos

Photo taken by Nudi

After spending the summer in Honduras teaching children photography, Jason and Becca from Our Journey for Hope have shared much the children’s work online. You have the opportunity to buy a student’s photograph, which will go towards increasing educational opportunities for the children of Flores, Honduras. Please check out the amazing photos these children took and consider donating to a great cause.

To see the children’s work go to: http://ourjourneyforhope.bigcartel.com/

Through The Eyes of a Child

This summer Noel (10) and Astrid (7) are here in the Boston area to receive continued medical check-ups (cardiac and orthopedic) and to spend their summer vacation with us. Both children attend a bilingual school in Honduras which operates on the American school calendar. The pubic schools in Honduras are open from February to November.

Their school curriculum is a rigorous one and they have endured a great deal of physical and emotional pain with their medical issues. So that makes summer time especially sweet and it’s always a wonder to experience it through the eyes of a child.

This summer Noel and Astrid have spent a great deal of time on the shores of Lake Champlain in Vermont. This has been their favorite spot where they are showered with love from our family and have met many new friends. Their days are filled with activities: swimming, boating, fishing, jet skiing and tubing. We often wonder how these experiences will translate when they are describing it back home to their families and friends…they are “foreign concepts” only to be imagined.

The children have certainly enriched our lives and many others who they have met. We can only hope the summer has offered their bodies a chance to relax and their minds to have been enlightened, and hopefully this will help give them the inspiration when they return back home to Flores where they will once again be working hard at school and home.

Esperanza Hosting Journey For Hope

Jason and Becca

Beginning in June 2012, Esperanza will be joined with Jason Musselman and Becca Laders for a two-month long, youth photography project in Flores, Honduras. The class focus’ on empowering impoverished youth, by allowing them to tell their stories and giving them a skill that would not have otherwise been available to them. This will be the second time this class will have been taught internationally, last year being in the biggest slum in Cape Town, South Africa.

Esperanza is thrilled to welcome these two gifted volunteers and know the Flores community will be enriched by this unique opportunity. To learn more about Jason, Becca and their project, please visit: http://ourjourneyforhope.tumblr.com

The Vast Range of Emotions

Brayan post surgery

The longer our stay in Honduras the more I experience the “highs” and “lows”…yesterday, we were mourning the loss of little Nelly and today we are celebrating the successful surgery on Brayan. Two weeks ago, Tom was introduced to this 10 year old who had an undescended testicle and right inguinal hernia. He discussed the case with a prominent surgeon in San Pedro Sula who expressed his concern that ideally, this surgery would have been done by the time he was two years old. Without surgery, there could be significant consequences including cancer.

Originally, we thought we would coordinate a trip to San Pedro Sula for Brayan’s operation. Fortunately, a dentist from Florida (Dave Girlinghouse) who was working in Flores, referred this case to his colleagues working at St. Benedict Joseph Medical Center, in Comayagua. A U.S. surgeon who is part of the Light of the World Charity successfully operated on Brayan.

Tom and I drove Brayan and his mother to the hospital and settled them in, reassuring them we would be back later in the day to see how the surgery had gone. We spoke with the medical staff, and were introduced to “Brother T”, a Franciscan Friar who is part of the organization (along with Light of the World) which run the hospital.

After picking up “our kids” at the bilingual school, we stopped by the hospital where we found a relieved mom and her son anxiously wanting to return home. We talked with the medical folks and they said they could spend the night, which we encouraged mom to do, but she was insistent they return home where two of her other children would be waiting. Since Brayan had been given “the o.k.” from the doctors, we agreed to take them and told mom we would meet them in front of the hospital.

To pass the time, we entertained our little students by buying ice cream. We were so surprised to look down and see Brayan and mom appear so quickly, and immediately noticed he still had an iv in his hand! Tom and I ushered them back inside, tracked down a nurse, and proceeded with the discharge process. They were given written instructions and pain medication, and then I remembered…mom does not know how to read, and asked the nurse to explain it orally.

Once again, we were reminded of the limitations when someone is illiterate, and the consequences of not having the opportunity of an education. Gingerly, we drove everyone back home to Flores. Tom carried little Brayan over a hand made bridge, into his one room home which had a sheet hanging, dividing the family’s bedroom from the living area. It’s so humbling seeing how people live with such little. We clarified instructions for pain management and reassured them we would return the following day for a “house call.”

As we returned home, I thought of “Brother T’s” gracious compliment given to us earlier in the day…”you two sound like good samaritans” …no words could be more motivating.