On the way home – 2014 (John)

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Telling Jonathan’s story

It has been two years, Jonathan.  First time I went in 2012, I was inspired by your dream and wanted to be part of the team to live it out.  I went without knowing much about this country Mongolia that fascinated you, except that the people are traditionally nomads and their country neighbours my motherland.

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2012 Mongolian Team

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The kids at Soccer Camp 2012 singing us a naadam song as thanks.

 

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On his way to the naadam horse race (2012).

With Candace’s and the boys’ great emotional support, I packed my bag and went!  I was blown away!!  I went home deeply inspired and touched.  I then understood why you were so fascinated about Mongolia!  The people there are so pure, content, positive, and happy.  Living their simple lives in the endless plains of the Mongolian Steppes, enjoying happy times with their family closely bound by their deep traditions in the warm gers, going through harsh winters with perseverance and strength, without fears… They have so much in common with you!  I was touched by their courage and strength to live… as nomads, as warriors against cancer.  I learnt the love that drives them to go on: the love of lives and nature; the love for their families.  I was moved by the innocent smiles that the Mongols patients had, even when battling life threatening diseases… just like you did.  I was touched by the love that the parents showed by being with them and holding them tightly… just like your parents did.  I learnt fatherhood at a deeper level when Steve was running around collecting Mongolian stones for you, and when he was praying in silence in Karakorum, and him turning your love into helping others.  I was inspired by the love of the doctors and nurses in Mongolia taking care of their little patients, even putting them before their own families… just like your doctors and nurses did.  I got to know two missionary families who went way way way before us to the Land of Blue Sky answering the Lord’s calling, taking care of Mongol children and being living testimonies of Christ’s love.  Two years later, these inspirations didn’t fade a bit; they only grew stronger!

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Bone marrow needles used by the hospital in 2012. They now have single-use needles.

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A mother holding her child tight.

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Visiting with patient and her mother.

Thank you so much, Jonathan.  I would not have the opportunity to learn and experience all these without you.  Thank you for having such wonderful dream and letting us be part of it.  Jonathan, I thank our Father for giving you such a loving heart and being such strong living testimony of His love and sacrifice.  I can tell you that we made many friends in the Mother & Children’s Hospital and we are honoured to partner in battling childhood diseases in the U.S. and in Mongolia.  There are many things that we have learnt from each other.  We are making many changes to take better care of the patients entrusted to us because of you!  Although I may not be able to go back to Mongolia in the near future, I am forever bound with them via the friendship that is beyond time and space, just like ours.

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2014 Mongolian Team.

Please continue to watch over us and inspire us.  We are honoured to partner with you to do all these and I will continue to tell these amazing stories… all started by one child’s dream.  The time will come when we meet again and chat and laugh over our little travel stories in person (milk curds in coffee, fly camp, Russian van…), until then, take good care of yourself and your family.

Mother and Child Hospital – laughter is the best medicine.

It’s time to say goodbye to the smiling faces of the hematology/oncology team who have so graciously welcomed us during this week.  As I look back and reflect on my week at the Mother and Child Hospital, I have to say that I am taking home many heartwarming and fond memories from our time spent here. 

Degi, a pediatric hematology/oncology attending physician, met us at our hotel on Monday and escorted us through the maze of bustling traffic and buildings to begin our first day.  When we arrived that morning, there was a lot going on.  Patients, parents and siblings filled most of the beds and outpatient children were arriving to be seen.   We rounded as a team that day, which allowed me to gain a baseline understanding of the flow of the unit and what types of patients that they generally see.  

In the afternoon I was able to follow one of the nurses as she went about her day.  It was amazing to see that they mix the patients’ chemotherapy right at bedside.  It was good to see that the nurses have implemented the recommendation from two years ago that they wear gloves during this process. They do not have central lines, so they must maintain peripheral IVs which can be challenging at times.  For the few patients that required new IVs during our rounds, family members often offered assistance and applied pressure above the desired site so that no tourniquet was needed.  We made several trips to the lab to drop off specimens so that tests could be run and so that blood products could be ordered.  These nurses work quickly and efficiently to deliver care to these adorable children.  

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Peek-a-boo.

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On Tuesday, we started our day with the news that two new patients had come in overnight and both would need bone marrow aspirations that day.  It was touching to see doctors and nurses utilizing the art of distraction, using stuffed animals and singing, to try to console the children as they were prepped for their (painful) tests.  Prior to their procedures, we gave both children Mickey Mouse necklaces, and it was touching to see the smiles our gifts brought to their faces.

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Checking on newly diagnosed patient after her bone marrow aspirate.

 

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She’s a lot happier the day after.

 During the course of the week I was able to spend a good portion of each day with the children.   One little girl refused to crack a smile while John and I made our “child life” rounds.  However, after we used stickers as an ice breaker, she smiled and then like a chain reaction her mom smiled.  We spent the rest of the day playing balloon volleyball and puppets with other patients as laughter filled the hallway.  Interacting with these children truly was one of my favorite aspects of this trip.   It is amazing that while we could not understand each other’s words, smiles and laughter needed no translation. 

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Playing puppets with my new found friend.

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She loved the necklace we gave her.

  – Alex Boddie  

Our introduction to Mongolian medicine (Cindy)

Although we had been prepared for what was to come, I will have to admit that the experience at National Center for Maternal and Child Health was both eye opening and rewarding.

To start our morning we make our way through the traffic, honking horns, broken sidewalks and dusty construction.  Once we arrive, we meet the oncology team to discuss new patients and events that occurred overnight prior to making rounds.  Dr. Sandler, I think they missed you; I tried my best to fill your shoes.  Although some physicians were on vacation, we were fortunate enough to have Degi, a fairly new oncologist, and Oyunaa, a pediatric resident, as part of our medical team who were able to translate.  Rita was also there ready and able to help as well, for which we are truly grateful.

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Examining a patient with Rita.

On our first day we rounded on every patient on the oncology floor.  A very full floor we must say.  There must have been 15 patients in house. There were plenty of teaching opportunities and discussion. Diagnoses included predominately ALL, but also AML, Histicysosis, Aplastic Anemia and a few Lymphomas.  The available chemotherapy drugs sound much better than years past, thanks in part to our previous teams’ recommendations.  However, there is more work to be done as it was quite heartbreaking seeing so many Leukemic relapses.  

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Discussing a patient’s case with the team.

With three to four patients in a room at times, it made no difference that there was no air conditioning – these children are so adorable and loving and quickly warmed up to Alex and John.  It was truly a heartwarming experience.  

Thanks to Dr. Sandler’s initiatives, I do believe that Hepatitis C PCR testing is under development.  On a bright note we were able to tour a new oncology building to be completed this fall.  The 2015 team should be quite impressed: Oncology alone will occupy 3 floors.  The cardiac cath lab will be located on the first floor.

 

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John, Alex and Degi mocking me as I worked hard to sign 100 certificates.

Our laboratory tour was quite impressive and afforded me the opportunity to view slides of a newly diagnosed patient.  I was excited to learn that flow cytometry is now available, at least on peripheral blood.  Acute Leukemia is now accurately diagnosed as pre-B ALL, T-cell ALL and AML.  A future goal might include the ability to perform Methotrexate levels so that high dose Methotrexate can be delivered.  

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With my anda (blood sister), Mongolia’s clinical pathologist.

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In my happy place. What a beautiful stain!

Lots of oncology, but hematology was not to be denied.  On day two I met an adorable little girl with 1% factor VIII, on weekly Advate prophylaxis!  However, we did learn that recombinant factor is in short supply and what a dream it would be for our Hemophilia Treatment Center (HTC) would be to “Twin” with Mongolia.  Missy, are you ready?

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Visiting with a Hemophilia patient.

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Discussing the clotting cascade.

The medical team remained eager to learn, always asking appropriate questions and very receptive to our input. It has been an amazing week, such wonderful people to work with.  I hope we can continue our Mongolian working relationship.  

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With the medical team.

-Cindy Gauger       

 

Reunion of the medical teams (John)

After two years, I am back to the National Mother’s and Children’s Hospital!  The rooms and corridors may have changed, but the friendliness and hospitality of Mongols remain. I was completely overwhelmed and touched by my Mongol friends’ warm welcome, even the people that I had met only once or twice during my last visit!!

After a brief Meet’n’Greet with the Hematology/Oncology group with endless coffee, tea, crackers, and the famous dried milk curds (Cindy’s/Alex’s first), we started going through some treatment protocols.  It certainly was very exciting to see that many of our recommendations from our first trip were put into clinical practice, including drugs we recommend to put on formulary, bone marrow needles, and diagnostic machineries.  We were so excited, we wasted no time and started seeing patients.

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Cindy and Alex get their first taste of airal (dried milk curd).

There are MANY major differences between Americans and Mongolians: geographic locations, cultures, faiths, languages, traffic patterns, diets, etc., etc. However, in the Hematology/Oncology wards, we are drawn together by the same calling to heal, to comfort, and to love.

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Entrusting the very lives of their most beloved children into the doctors’ hands, the parents’ eyes have the same mixed feelings of fear, uncertainty, and threads of hope… The same eyes that I saw two years ago.  The same eyes that I see back home in the US.

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Cindy rounding with a family discussing their young son’s diagnosis.

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Rita and Cindy discuss a babies symptoms.

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Oyunaa, Degii and Alex listen intently as Cindy reviews a case.

 

We see little brave warriors fighting for their lives receiving chemotherapy drugs that even adults fear.  We see a teenager girl broken into tears knowing that she needs to endure more vincristine infusions that cause her lots of pain with every dose.  We see families fight on with courage despite relapses, side effects, and failures.  We see worried fathers sitting at the end of the bed, wandering outside of the rooms sharing his deep love and concern in silence. We see mothers comforting suffering children with their loving arms and big hugs.  We see the same heroic stories beyond skin colours, cultures, and medical backgrounds back home and here in Mongolia.

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Cindy rounding really hard while John takes photos of the babies, the staff, the floor….

However, in the dark and partially ventilated Oncology ward, we also see angels in white coats who bring hope to every dark corner.  They may not be able to cure every patient, but I see the same hands of Mongolian and American doctors delivering not only the best skills in healing, but also care, comfort, and hope to the families they serve.  In their eyes, I see the same passion and determination to cure as possible. It is our honour to fight along side our Mongolian counterparts again to battle childhood cancers together.  May our busy week start!

 

Return to Mother and Child Hospital (Steve)

Two years ago I wrote: “It is the same in all nations and cultures everywhere: the look of fear in the face of a parent whose child has leukemia.”  Much has changed in UB over the last two years, but when I returned to the Mother and Child Hospital with the medical team I saw that one thing most definitely hasn’t changed: that fear-filled face of the parents on the oncology ward.
I spent Monday morning following along as Cindy, John, and Alex did rounds with the Mongolian doctors and residents through the pediatric oncology ward. We were greeted warmly by Dr. Chimgee and Degi, who speaks good English and has become our primary contact at the hospital. We were also joined by Oyunaa, a young resident in hematology-oncology who also speaks good English. Both John and I were delighted to see that people remembered us and were happy to have us return and offer our services.
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Cindy leading rounds with a young cancer patient.

I will leave the full medical explanations to those who are actually qualified, but I made a few observations that are perhaps worth sharing. First, it was great to see Cindy in action again. She was one of Jonathan’s doctors and always had such a wonderful attitude and personal style, no matter how dire his prognosis. Even in translation, her upbeat demeanor and compassion shined in the dim surroundings. It was also my first chance to see Rita working at her craft, and I was deeply impressed by her medical knowledge and professionalism.
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An anxious mom watches the rounds.

As we progressed through the rounds, I began to hear language I didn’t hear two years ago: “This is an 8-year-old girl with T-Cell ALL (Acute Lymphoblastic Leukemia).”  I glanced over at Rita, who looked equally surprised and leaned over to say to me, “That’s new–it’s the first time I’ve heard them use a full cellular diagnosis. They must be using the flow cytometer now.”  Regular readers of our blog will remember that, two years ago, on our first trip to. Mongolia, Eric Sandler suggested that the hospital try to acquire a flow cytometer, an expensive and technologically advanced machine which enables doctors to determine whether a patient with blood cancer has leukemia, lymphoma or some other type of cancer–and gives them the ability to isolate the type of leukemia or lymphoma (T-Cell or Pre-B Cell leukemia, for instance) and modify treatment accordingly. When the team returned last year, the hospital had managed to acquire a flow cytometer but didn’t have anyone on staff with the expertise to use it. Last year Eric suggested that they get some reagents to make the machine operable, and over the past 10 months they have somehow managed to do so and learned how to operate the device on a rudimentary basis–enough to make more nuanced diagnoses. Thanks to a little boy and his doctor, the Mongolia Bound teams are clearly making a difference.
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A young cancer patient eating breakfast.

The rounds were both heartbreaking and uplifting. As I said at the outset, I recognized and empathized with the grim expressions on the faces of the parents. (The children are almost always in better spirits than their parents, here in Mongolia or in the U.S.)  When we encountered an 11-year-old boy who had relapsed ALL, it struck a little too close to home and I had to leave the room with tears steaming down my cheeks.  But on the way to another section of the ward we encountered an anxious set of parents whose 18-month-old daughter had been sent to the hospital in UB because a countryside doctor thought the spots along her midriff might be the telltale bruising of leukemia. As Cindy and Rita peered more closely at the child lying peacefully in her father’s arms, they came to the same conclusion: those weren’t bruises but temporary blemishes, probably a dermatological rash. The little girl had no need to be on the cancer ward and could go home with her parents. The mother–who, it turned out, had spent four years in London–thanked us profusely in English. If only more of the diagnoses could have such happy endings.
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She is worried now, but she is going to get good news.

On Monday afternoon I headed over to soccer camp, and I will give a full report on how that’s going in my next post.
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