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.

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.

 

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!

Noel Going Above and Beyond

Noel with Abuelo, Abuela, and Tio Bob

-This post is written by Rick Lania

Something I have had a hard time articulating when describing my experiences with the children in Honduras is how the kids pay you back so much more than the work and effort that goes into providing them with medical treatments. Statements like, “they can always put a smile on my face” do not mean nearly as much to the person I am speaking with when they are out of context. This is why I thought I would share an example of one of the many ways Noel has gone well beyond “paying back” my family.

Recently, my Grandfather has been in the hospital, which hasn’t been easy on anyone in my family. In Honduras, Noel learned this information from Ana and decided he was going to check how “Abuelo” was doing on his own. Throughout this week he has tried to call each night. One night I spoke with him, others he couldn’t reach anyone, and last night he spoke with my mom. For a 10 year old, he was very persistent and extremely caring, with each phone call asking “How is Grandpa doing?” It definitely meant a lot to me and showed just how much he cares about the 2nd family he has become a part of. I can’t wait to see him in a few weeks!

Why We Do What We Do

People often ask why we keep going back to Honduras, especially with how dangerous it has become. This letter from Iris Maria is one of the many examples of how rewarding our work can be. Only part of Emily getting to hear the letter for the first time was caught on video. However,  Laura Sierra who is reading the letter, was nice enough to translate the whole thing which you can read below.



This is for someone very special who has stayed recorded in my mind and in my heart and a person that I will never forget until the day that I depart this earth.

Hello Emily,

You know, I want you to know that there is someone who loves you very much. In my heart, there is something very special for you. You are an angel sent from God into my life. I will never forget that date… Tom especially, November 25th, 2008 when we met. Thank the lord our creator from the sky, that today I can run and walk. I’ve suffered, I have cried, I have been rejected but today I can say that there is hope. And this for me is a triumph. The same for you as well. I wish with all my heart that God keep you and your family safe in your travels. And that you guys continue to be prosperous in all that you do. God almighty on this day I ask that you give Emily and her family strength and that everyday you be her helper and illuminate her path. Bless their hands and their feet because they bring blessings to many. Thank you God because that is the way it will be. Amen. I want to say that I don’t have any money to repay you but I do have something that is very secure, and that is my heart. Full of sweetness. Now I ask that you never forget me, where ever you go please. Keep me in your thoughts and in your heart. That will make me stronger and it will show me that you guys will never be ashamed of me. Some day you will see that I will triumph.

Thank you Emily.
Iris maria Mendoza
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