Happy birthday, dear one

Today is the birthday of my dear double cousin.  When I think of her, I think of grace and strength and laughter. She is a wonder.

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Thanks to having fathers who are brothers and mothers who are sisters (2 brothers married 2 sisters), we share enough genes to be sisters, and indeed she feels like my sister. My cousin was one of my very best friends through my growing up years, and she is still the person to whom I feel I can tell anything.  When my life has fallen apart, she is the one to whom I run.

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As an added bonus, she has known me for my entire life. She was the person who advised me through every childhood crush. The person who would happily read silently with me — or talk until the wee hours of the night. The person with whom I most often laugh until the muscles in our stomach ache. She was also the person in the passenger seat when I accidentally drove our station wagon seriously off-road, ending in donuts that ruined a pristine golf course. When the irate golfers began to chase us, she was the one yelling “Faster, faster, drive into the woods!”

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I’m the little one in the middle. My birthday cousin is on the right. Her older sister is like my sister too. LOVE.

Because we share all of the same extended family members – and because our parents were close – we share many of the same memories of childhood. The smell of dried banana chips reminds both of us of car sickness since they were the snack of many a long car trip. We know that our grandmother’s soup should be avoided at all costs. The mention of a not-to-be-described-bed-breaking incident makes both of us laugh uncontrollably.

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She’s in curls on the left. Her older sister & my youngest brother in the middle. And me with my long braids (and a Vreeman family reunion shirt).

And when we think of Washington DC, we think of facing one of our greatest fears.

Our earliest memories of Washington DC are that of family vacation disaster.  This is what I remember: Sweltering heat in the middle of July and becoming exhausted and sick with heatstroke while waiting in line to go up in the Washington Monument. Staying all the while at a campground in the aforementioned sweltering heat with our large combined families. And then the water stopped working. Days without showers.  And my younger brother got terribly sick, with sores covering the inside of his mouth and throat. I recall very stressed out adults, and, in retrospect, I can imagine that the no-water, very-hot campground days with 7 children was not an idyllic family get-away.

But what we remember the most clearly was this: We were driving around the Mall in downtown DC, and, for extra fun, the engine in my uncle and aunt’s van caught fire. This was a old-school conversion van with the engine stuck between the driver’s and passenger’s seat. As the flames and smoke billowed from the front of the van, all of us kids had to quickly evacuate.

Our parents attempted to extinguish the fire with trusty thermoses of coffee (Dutch parents carry those in abundance) and the wailing fire engine sirens could be heard as the engines attempted to make their way through traffic.

But as my cousin and I stood on the sidewalk in the midst of this emergency scene, we had only panic for only one thing — our library books that we had been forced to abandon inside of the van.  WHAT IF THE LIBRARY BOOKS BURNED???

Two book-loving nerds, fearing the loss of books read and unread that did not belong to us. After all, what Midwestern librarian would believe that your library books were incinerated in a conversion van inferno in Washington DC? The revoking of our library cards would have been much, much worse than hot days without running water. It is a nightmare scenario that haunts us still.

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And so, on this birthday in 2014, I wish you a day with many books, much laughter, and knowledge of all of the love that so many have for you! Happy birthday, dear one.

As a side note, I dedicated our forth-coming sex book to her…

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Gift-Giving

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Rose sits down on the chair next to my clinic desk with her arms full of toddlers. Her 18-month-old twins, a boy and a girl, are determined to head in different directions in the clinic, and the mama struggles to rein them in.

To help Rose – and to make friends with my patient – I pick up the little girl, Elizabeth. Her short hair has been carefully twisted into tiny, 1-inch braids all over her head. She has enormous eyes that immediately make you think she will grow into a great beauty. She is adorable.

I pull out some stickers from my pocket to woo her with bright smiley faces, and she quickly puts them all over her hands and mine. Of course, I am enchanted by her.

Her twin brother, Kyle, sits more calmly in his mother’s arms, watching me with matching big, brown eyes. I hand over some stickers to him as well, and he smiles at my little gift.

Then, I get to give their mother a much better gift.

Rose is infected with HIV, but during the entire time that she was pregnant and through a year of breast-feeding the twins, she took 3 HIV medicines to keep the virus at a very low level in her body. Every day, she took the medicines — while her babies grew and ate and slept and became these feisty little people. Rose also made sure that her twin babies had preventative HIV medicines for the first months of their lives. She brought them to clinic at AMPATH every month, and we watched them grow and tried to keep them extra-safe with medicines to prevent infections. We try to protect babies from HIV all the way through pregnancy, child birth, and breast-feeding.

Today, I get to tell Rose that it worked. Officially. On their third and final test — the test that we can only do once babies hit 18 months of age — I get to announce to her that these precious babies are HIV negative.  All of Rose’s work meant that the HIV virus in her blood does not infect her babies.

When I told her, Rose’s eyes crinkled and filled with happy tears. So did mine. Such great news.

We are actually really good at preventing babies from being infected with HIV. If a woman starts HIV medicines while she is pregnant or even during the time of delivery, we can reduce the chance that her baby will be infected to less than 2%. There is no reason that we cannot give every HIV-infected mother the gift of good news that Rose received today:

Your baby does not have this virus.

 

In 2012 alone, programs like ours that are funded by the U.S. government’s PEPFAR program averted at least 230,000 babies from being infected with HIV. Worldwide, we have prevented at least 1 million babies from being infected. No baby should be born with this virus. If we can get women tested and linked into care and if we can get them to take these medicines like Rose did, we can make sure that no baby will be born with the virus. It’s a big “if”, but it is possible. An AIDS-free generation.

The gift of two HIV-negative twins was a gift to me too. As the only pediatrician in an HIV clinic, I usually end up seeing lots of really sick kids, the complicated cases. The clinical officers see most of the regular patients who are doing well. As their consultant and supervisor, I get to see their difficult cases. I spend most of my time in clinic trying to figure out what on earth to do for the children who are having all kinds of problems.

This makes it a special joy when I get to play with healthy, happy, growing toddlers like Elizabeth and Kyle. And the very best part of the day — a gift to me and an even bigger gift for Rose and her children — is to celebrate over the verdict that these little lovies are HIV-free.

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I long for the gift of good news for all of the mothers and grandmothers who wait with their babies in the HIV clinic.

 

 

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Hello Beautiful Day

I try to start the morning by writing in my lovely, little “Hello Beautiful Day” notebook. Just a few words, hand-written, expressing gratitude. It’s usually a simple practice, likely made easier by the fact that I bounce awake easily in the morning.

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This morning, though, I woke up with an unusually heavy heart. Albeit some of this was the result of 36 hours of air travel, a 7-hour difference in time zones, and long delays at the airport yesterday that didn’t put me into my own bed in western Kenya until late at night.

Weighing heaviest of all were the terrible news and footage from a Kenyan coastal town called Mpeketoni, where at least 50 people and likely more were killed by a violent group of some stripe. Most of the people were watching the World Cup matches, like I had been, like most of Kenya wants to be doing in the evening here.

Also very heavy is the knowledge of the terrible, unjust, and inhumane government reaction to the unrest over these past months, in which they have detained thousands of Somali residents of Kenya, including many women and children, in terrible conditions.

Even the US soccer team’s delightful and gritty win over Ghana could not fully lift my spirits. The US Embassy was flooding my inbox with warnings about travel in Kenya that drowned out my triumphant soccer updates.

The violence continues, the harsh but ineffective reaction continues, and this beautiful country suffers under the weight. And there is fear too, the unsettled worry just under the surface of adults’ thoughts. As I sat in the airport in Nairobi, trying to enjoy a beer and soccer while our plane was unable to leave due to the coastal unrest, it was all too fresh in my mind that the only other restaurant in the airport had been destroyed in another recent explosion. The airport felt like a dangerous place.

A heavy heart. And yet…

Here I am in western Kenya, where I have the privilege to work with one of sub-Saharan Africa’s largest and most innovative HIV care programs. I have 14,000 children at 25 clinics who are alive and thriving and growing towards adulthood because of the medicines and care system we are able to provide. I have new team members ready to tackle some of the many projects I keep dreaming up. And I get to be a pediatrician for these thousands of beautiful, precious children.

My children here live in a world of poverty, of injustice, of brokenness. My children live in a world of risk and uncertainty, where too many lives are ended far too early. My children live in this world that makes my heart heavy and worried.

And it is my privilege to be here with them. To start this day, to start tomorrow, to start what I hope will be hundreds of tomorrows – all with the thought of what we can do to keep these children alive and thriving.

Hello, Beautiful Day.

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It is a serious thing

Just to be alive

On this fresh morning

In this broken world.

- Mary Oliver

 

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Beautiful Game

I am headed across the continents, but not — sadly — to fabulous Brazil and the World Cup. Instead, I am headed to my usual locations in East Africa.

Nonetheless, I had the chance to watch my favored Dutchmen exact some revenge for the tragic loss in the last World Cup, defeating Spain by a dramatic 5 to 1. I was the only person at the hospital yesterday dressed to represent Oranje.

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After watching most of the game surrounded by men rooting for Spain, I was delighted to be joined by another Dutch Rachel, proudly sporting her oranje as well. A happy day for the Nederlanders.

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In coordination with the World Cup, UNAIDS (the United Nations organization devoted to AIDS) released a campaign devoted to “Protect the Goal” and raise awareness about HIV.  I loved it that the official van Persie Twitter channel (@Persie_Official) was tweeting about the UNAIDS campaign in the midst of van Persie’s amazing performance yesterday.

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UNAIDS has a series of videos with players encouraging people to get tested for HIV and to use condoms. Great! So, in the midst of the excitement of the World Cup, I will be working on this team:

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Focused on Adherence

This week finds me in Miami (happy place!) for the International HIV Adherence meeting. I love attending this meeting not only because of the beach (yes, I’m happy anywhere with a beach), but because I am surrounded by smart, interesting people engaged in exactly the same challenge that I wrestle with all of the time — how to help people with HIV take the medicines that will sustain their lives every single day for a long, long time.

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The problem with antiretroviral therapy — the medicines that fight HIV — is that if you don’t take theses medicines almost perfectly the HIV virus can become resistant to the medicines and then they won’t work any more. You have to take the medicines every day, at the same time each day, and you have to keep doing that for the rest of your life. Adherence to therapy (taking the medicines the way they are prescribed) is central to keeping HIV under control for the long-term. This is the focus of much of my research work.

My quest is to figure out how to help families with children with HIV and living in poor places meet this challenge of having their children take HIV medicines for the rest of their lives. We need to find out which families are REALLY having problems so that we can then figure out how best to help them with the medicines. And we need to learn how to do that in this very particular setting in Kenya – and in other poor places like Kenya.

The context really matters here. We need to ask: What is it like to take these HIV medicines every day when you live here?  What is it like to take these medicines every day when you are Kevin?

Kevin is 6. His father and his mother have died, and he lives with his uncle and auntie in far room of this mud complex.  Kevin’s auntie gathers water from the stream in that yellow bucket, and she does her cooking over a small fire in the wooden structure attached to their house. Inside the one room, Kevin lives with his auntie, his uncle, and his two small cousins.

Kevin is not the only one in the family with HIV.  His mother and father died from HIV, but his uncle, his auntie, and his two small cousins are all infected too.  This is their big secret though.

They keep the medicines and their diagnosis as hidden as they possibly can – even though they live in this compound with 20 other people.  They have seen their neighbors react to others who are known to have HIV.  They have seen them refuse to share their food, move away from them on the bus, and prevent their children from playing with those who are known to be infected. Kevin’s family is ashamed of this virus in their blood.

And in the midst of this stigma and isolation and the grinding poverty, it can be pretty hard to make sure that a small boy takes 4 different medicines twice a day, every day.  So, how do we best help Kevin and his family take these medicines every day for the rest of their lives?

The challenges to keeping up with these medicines are one of the hardest things caring for these families for the long haul. So, that’s a big part of what I work on. I have done research work to gather their stories, to create a conceptual model of how children’s adherence functions in a place like Kenya, and now we are sharing the results of our great measurement project that helps us understand which families are having problems with their medicines.

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