Wednesday, May 27, 2009

It's a partnership

I've been thinking a lot about the meaning of the word 'partnership' since we returned from our trip. I looked in the dictionary. I read the words: colleague, ally, joint interest, association. I know we've been 'partnered' with our sister hospice since 2000 and I know that the Foundation for Hospices in Sub-Saharan Africa have made almost 80 partnerships with hospices in the US and Sub-Saharan Africa. But what does that word truly mean and what are the inherant expectations of being partnered with someone or something?
For me, having returned now from my second trip to South Africa, being partnered with our sister hospice means having a sacred covenent with not only the hospice organization itself but also with its staff and employees. I am bound to them as they are bound to me. We are teachers and students to each other. We are work colleagues worried about the same issues. We are human beings struggling with the same concerns and experiencing the same joys. We are brothers and sisters.
Our trip has ended but not our partnership. Our sacred convenent continues. Our work together continues. Our fundraising continues. This blog continues. We need you to help us continue this important work. Won't you please find a way to continue supporting our partnership? Of course, we're always happy to receive donations- money and medical supplies. We also need you. Join our African Committee. Support our fundraisers. Talk about our partnership in your communities. Share your professional expertise.
Thank you my partner.


Wednesday, May 20, 2009

Back At My Desk

So I am back at my desk, hard to believe that just a few days ago I was on Safari in Kruger National Park and just a few days prior to that I was side by side with my Hospice Brothers and Sisters in Soweto and Johannesburg. I am sorting through emails, catching up on what I missed while I was gone etc, but all the while my mind wanders to my new friends half way across the world and I wonder what they are up to...
People stop me in the hall and ask how was the trip. I answer fabulous, great, exciting, meaningful. All words that really seem inadequate to describe the feelings and growth I experienced as part of this great adventure.

I was really impacted on so many levels it will take time to integrate it all. On a personal level, I am still discovering ways I have grown in my understanding and experience of the human condition. Every time I tell a story I reconfirm for myself just how similar we all really are. No matter where you call home, we all feel joy, fear, pain. It doesn't matter what our challenges, we all find a way to face them, and all have the power to bring our own attitudes to bear on the experience. The most inspirational stories for me were those where a person's choice of attitude conquered seemingly insurmountable circumstances.

On a team level I was able to get to know 6 phenomenal people and began some wonderful new friendships. We laughed and sighed together. We got to know each other really, really well. 24/7 for 2 weeks....Same house, same bus, same outings, and same bathroom. We all got to see beyond the everyday exterior. Blending 7 strong personalities was not always easy but definitely left me respecting the unique strengths and vulnerabilities we each brought to the group. I learned some things about myself and celebrate the gifts I discovered in my peers.

On a Hospice Level, I was honored to be welcomed by such a wonderful team and organization that is our Sister Hospice. The powerful stories and courageous work we witnessed humbled me.

I have so many patient stories and experiences tucked away. I only hope I will do their stories justice as I continue to advocate in their behalf. Of all the patients we visited, I was most impacted by the pediatric unit. I think it was such an impressive unit. But at the end of the day, seeing children ill always cuts to the core. At the daycare, seeing beautiful bright eyed children impacted by the illness or loss of parents made my heart swell with gratitude that they were, for at least part of the day, in such a loving environment.

As for the staff... We were made to feel we were special guests and treated so well. The generosity and care that was bestowed upon us was overwhelming. Staff gave of their time, energy, and resources to make our experience very special. They endured our unending questions and always, always, responded with a smile and genuine joyful spirit. It is a beautiful thing to connect instantly with another... from such a different background.

On a global level, the need is clear. Food, Health care, Employment and Basic Human Rights and Freedoms. This is basic to what every living person needs. In South Africa there have been strides on may fronts but there is still far to go. And as I think of how to help South Africa, I can't help but think how I can do a better job here in my own country. The lessons I learned from South Africa are still applicable right here at home. We really are all walking on the same planet.

Then, I watched the sun rise over the African wilderness, saw a baby Elephant in the shadow of her protective mother, watched Impala with innocent faces graze in harmony, heard the beautiful songs of many colorful birds and remembered that there is a God, a great power of good that we can harness, and there is Hope.

In great appreciation,

Tuesday, May 19, 2009

Home Again

Home again! We’ve logged in more than 40 hours of air time in the past two weeks and countless more hours in three airports. Days and nights have exchanged places. I’m writing this blog at 4AM. Probably sleep will come and days will normalize after awhile, but how can I ever be the same person as before I left?

It will take weeks and maybe months to fully process all that I’ve witnessed: unshakeable faith in the midst of abject poverty, Africans singing on street corners and in classrooms, the children of Mapetla fluttering around us with extended hands waiting for their Donald Duck stickers, the horrid conditions of the government run hospital where we visited the children’s ward, and by contrast, the Soweto Hospice, so clean and welcoming.

One evening, sitting across the dinner table from our host, Dr. Patrick Mashele, I peppered him with questions about the work of caring for so many impoverished lives. Helped along with a bottle of South African wine, the conversation had turned philosophical. “We are put here,” he said, “to be someone’s ladder.” It was a surprising image that made an immediate impact. It’s not just about lending a hand. We are meant to be ladders, to invite a stepping up, to give someone a foothold and help lift him from his circumstance.

In leaving Soweto, I like to think that our team has done some laddering work. We’ve worked closely with the hospice staff as trainers and consultants while their organization undergoes major change in a desperately struggling economy…..far worse than ours. Maybe we have added a rung or two, or maybe we have simply fortified an existing rung so that more patients can be served. I hope so.

And it has not been a one-sided relationship. Not at all. I came to Soweto wanting a new life experience, yes, but more than that. I came seeking a deeper response to life, a truer sense of my humanity, and a closer relationship with God. I have been lifted too.

Roxie Smith

Monday, May 18, 2009

Reflections of the Soweto pediatric inpatient unit

As an employee of Hospice SA it is amazing how I would attempt with my entire being to avoid entering our Pediatric Ward in Soweto. However my passion gets the best of me all the time as I try with all my might to bypass the ward. I am drawn by the little cry or laughter that fills the corridor. Entering the ward always has the same effect on me: a lump in my throat, tears streaming down my cheeks and a knot in the stomach. As I visit these little people from crib to crib there may be a silent cry “Why Me” or “Please Love Me” perhaps “Hug Me Please.”  I stand dumbfounded as I watch dedicated “Care Giver”, Nurses and Doctors working with so much love and compassion. Some feeding, diaper changing or just holding a crying little one. At time when I am able I would dig deep and contribute to the care. Occasionally I just want to flee from the scene and justify my actions for not caring – How can one so tiny endure so much! How can one turn and run when the need declares this is not fun! How, how do you ask this tiny being to hold on, because tomorrow will be a better day! I salute all hospice workers – you make working at hospice worthwhile. Thank you Stacy and Team for touching the hearts of our Nation. God Bless.


Mrs Eugeny Maraba

Center for Palliative Learning, Head of Department

Gift's poem

Below is the poem Gift wrote while a patient in our Soweto hospice:


By Gift Khontyaphi


My Lord I ask you now,

Help us children and me;

To grow up until we die.

I thank you Jesus,

Because you help me when I'm sick,

I thank you Jesus for our mothers,

 Our doctors, our sisters.

They love us so much.

Please Lord help me

To grow up until I die.

I have lots of sickness

Since I have been small

Now I am better

I feel well.

To feel sick is not good

I feel tired

And don’t want to drink my medicine,

I feel sad, I want to see and be with my family.

To die is not alright.

Don’t think about dying.

If you think,

 You are going to die fast.

Because to die is not alright

I want to grow up,

Grow up until I die.

My HIV is not alright 

I want to drink my medicine

Please Lord give us Power

I know children want to grow up

But if you don’t take your medicine

You will die

I feel bad, I feel sad,

I feel naughty, cross and angry,

I feel everything has been stolen from me

My life has no control.

It makes me want to be naughty

Please Lord help me.

My Lord I ask you now,

Help us children and me;

To grow up until we die.


I want to grow up until I die

Below is a post from one of the pediatricians at the Soweto hospice, Louisa Ferreira.  Read it carefully- it's important...

The saying that always hold true to my heart is the one that says” To much is given, much is expected”.  It humbles me to see how this saying resonates into the visit from our Sister Hospice – the Suncoast Hospice. The drive and passion and above all the love and dedication shown by our “American family” has been nothing but celestial.  The American people are very fortunate to have such devoted and caring people working within their own communities.

Soweto is a developing area filled with a great amount of destitution and poverty.  It has had a very difficult political past and it has begun to pick itself up out of the trenches. However our HIV pandemic in South Africa is a huge stumbling block, our infection rates are so high, that the mere plugging of the leaks in the proverbial dam wall is no longer effective.  Our dam is ready to break and it is causing great devastation in its path.

Currently, we are having a great number of infected children and AIDS orphans.  Our children’s caregivers: their mothers, fathers, aunts, uncles, brothers, sisters, grand parents and neighbours are dying and so are the children themselves.  HIV is a disease that wears many masks and it infiltrates itself into every person in the family so violently and without restraint.  Our Hospice has been hard hit by the virulence of this disease. The majority of our children will do well if started on medications early enough, but for those who have poor social circumstances (which is too common) and are unable to be compliant on their medications; or who have been started on the medications too late in the disease process, their future remains a very uncertain place for them. Many of them will end a life far too young and with so much undeserved suffering and pain.

I had a 13 year old male child, called Gift, recently in our Soweto Hospice who is HIV positive and TB infected, he is becoming more and more resistant and poorly controlled on 2nd line ARV (Antiretroviaral) treatment due to poor  social circumstances, poor drug compliance and also for defaulting treatment.  Gift was refusing to take his medication due to the great pill burden of taking more than 15 different medications per day.  This in turn has caused him not only to become resistant to his ARV’s but also his TB medications. Currently Gift is an inpatient at a local Infectious disease hospital, because he has multi drug resistant TB. He is away from his community and family and will have to stay admitted until he is no longer infectious, this can take many months or even years. 

An important thing Gift once told me was that despite his sickness he wanted to grow up until he died.  What wise words for such a young boy, the profoundness of its simplicity and honesty.  We cannot cure everyone but we can allow our children to experience their childhoods and to alleviate their suffering and provide them with enough peace, comfort and support that they can truly: “Grow up until they die”. This principle I think is our Mantra for Hospice.  We want despite undefiable odds to allow our patients to experience LIFE and to live their dreams despite the final outcome that one day they may be taken from their families and die due to their illnesses.  Our children need to experience their child hoods and to grow up before they die! Hospice is a place of living, a place for life, a place of living even for some in the umbrella of death.

Thank you all for your generous support to our country and Soweto Hospice, your generous donation extends past its monetary form to that the angels can only speak of.

GOD bless you all on your life’s journeys,

Regards and Respect

Dr Louisa Ferreira MBCHB DCH(SA)



We are all created equal in the eyes of our higher power… but do we treat all equally?

Every day miracles happen in Johannesburg and Soweto. Some are small- others quite large.  In 1994 South Africa celebrated the end of an awful era in its country’s history- the end of apartheid. Only 15 years old, there is much to celebrate already.  When visiting patients in the Houghton area of Johannesburg I witnessed two such miracles.  Roxie and I spent the day with Annette Bruns, a nursing sister from the Houghton office.  Annette took us to visit Frieda, an elderly white woman and her husband Marco.  Along with many other ailments, Frieda was losing her eyesight and required much assistance with her activities of daily living.  Frieda and Marco had live in help, a young black African woman.  Unable to have their own children, Frieda and Marco have been quite generous to their assistant.  After their domestic had a child, Frieda and Marco welcomed this baby into their home.  The child is even Frieda’s namesake, and carries the name, Frieda.  I marveled watching Marco lovingly hold this black African baby, cooing to her, and acting in all ways as the baby’s grandfather.  What a miracle to see this blending of a white and black family in a country that only 15 years ago imprisoned black Africans for something as small as not having a correct passbook to move from one township to another. 


Tiny (the patient’s name- not the size of the miracle) is the second miracle Roxie and I witnessed.  Tiny was the longtime domestic for a white family.  She lived with the family for over 40 years, helping to raise the family’s children.  Over the last few years, both of the elderly caretakers died.  One of the caretaker’s adult daughters moved into the home and insisted that Tiny stay in the only home she’s known for over 40 of her 67 years of life.  Tiny helps to keep the home clean as best she can, often doing things because she wants to- not because the family expects her to.  As we visited with Tiny I couldn’t help but notice on the shelf behind the table we sat dozens of family pictures- all of them of white people.  Equally comfortable in this setting was small but mighty Tiny- an equal family member for over 40 years, living the rest of her life in the only loving home she’s known since she was an adult. 


I couldn’t help but thinking as I visited with these two families… how many of us in America have opened our homes and lives to someone who is different than us (in whatever way we see differences)?  Are we able to see the humanness and sameness of each of all? And, would or could we have done this so soon after the birth of our own civil rights movement?  Every day in South African people risked their lives to support the anti apartheid movement.  Today miracles occur each and every day.  May we learn to embrace these every day miracles and make them happen in our own community.


Living in two worlds

I sit at my desk at home, writing this reflection.  It has been just about 24 hours since we touched down in Tampa.  It’s hard to believe that the two weeks with our sister hospice is over.  My heart and mind are struggling to ‘right’ themselves. My heart is joyful to be back home with my family and is full of the love for my African brothers and sisters. My mind is adjusting to the reality of being home- going through mail, emails, paying bills, etc and I continue to think about my African colleagues- wondering what they’re doing now and how this or that patient is. The reality, though, is that this trip is not really over.  It’s true that we’re no longer in South Africa, spending our days face to face with our African colleagues.  What is equally true is that today is just another day in the continuing and ongoing relationship with our sister hospice.  In 2000 our partnership began and today, May 18, 2009 is the beginning of the next phase of our relationship.  Today, alone, I have received two new emails from African colleagues and I noticed that I had received several emails from other colleagues while in South Africa.  I am so proud of the work that happens every day in Johannesburg and Soweto.  Great things happen each and every day.  We’ll be writing more about this great work during the coming weeks.  There are many stories yet to tell.  Please keep reading our blog.  There will be new postings frequently. Our South African colleagues are also joining our blog and will be sharing their stories.  And, as always, there is more work to do.  Your continued financial support will assist our sister hospice in doing its daily work. 

Keep in mind: Life in its passing is a sacred thing, never to be repeated. Let not a day pass in which we do not honor life's mystery or behold its wonder in our hearts.

Tuesday, May 12, 2009

Herbie and Zeba find new friends

Herbie and Zeba traveled all the way form Clearwater, Florida to Soweto, South Africa in search of new friends to play with. They found their new home at the Soweto Hospice where two pediatric patients welcomed them with smiles and open arms. Thank you Carole.  

Lea Ann's Soweto Hospice home visit

Last week, Steve and I made home visits with a sister (nurse) named Dorcus (pictured above on right).  Most of the 8 homes we visited had

 plumbing and electricity which is unusual for that area of town.  All had TV’s but not all of them operated.  The sister explained that TV’s are a status symbol regardless of whether they are working. 

One patient in particular sticks in my mind.  Her home had no electricity.  She was not at the house when we arrived.  Knowing her family would not let her leave the house; she awakened before them and went to the store to buy her granddaughter (pictured above in red with her mom) some milk.  As we were leaving, the police arrived with this patient who had fainted in the street and refused to go to the hospital.

After the patient regained her composure, the nurse explained we had brought her a monetary gift from the sister hospice in America.  She stated in English “please just help me with my shoes”.  I noticed her feet were very swollen and her shoes were too small.  She was thrilled with the money we gave her to buy shoes that fit – something we take for granted.

Lea Ann Horton RN     

Contribution from Sister Hospice

For the past three months volunteers at The Hospice of the Florida Suncoast, in Clearwater Florida, US, have been holding a number of fund raising activies on behalf of their sister hospice The Hospice Association Witwatersrand.

Through a variety of events including ice cream sales, selling soup packages, and through private donations, Dr. Stacy Orloff, was today able to present to Mr. Lyle Nesbitt, Executive Director, a check in value of R 59,290. 

This donation will be used to continue the important work of the Hospice Association Witwatersrand as they continue to bring compassionate medical care to patients in Johannesburg, and Soweto.

Monday, May 11, 2009

Graduation - Ancillary Nurses Course at Soweto Hospice

By Eugeny Maraba

We had an exciting start to the week when Old Mutual presented the Training Centre with a well needed donation of R 9000.00. In 2008 Old Mutual partnered us in training Ancillary Nurses (Care Workers) who are from the previously disadvantaged communities of Soweto, Diepkloof and Orange Farm. The majority of candidates live in informal settlements where crime is rife, and basic services such as clean running water and electricity is still found lacking. A great number of the candidates are teenage school drop outs and unemployed. Previously Hospice subsidized this training completely however with the change of our financial climate the Old Mutual assistance now lifts that sole responsibility.


This is just one example of the learning programs that Hospice is funding. More help is desperately needed. Please donate today. 

Volunteering at the Hospice Association of Witwatersrand

Helene Jacobson has been volunteering at the Houghton office for over fifteen years. When asked why she chose to volunteer at the Hospice Association of the Witwatersrand she said she works at hospice because it has a very loving atmosphere and does not discriminate who they care for. She helps with care giving counseling and intake.

Hospice has given back as much as I have given. They appreciate the people who volunteer and it is rewarding to know I can help someone in their time of need.    -Helene Jacobson

US team arrives at Houghton

The Exchange Team from The Hospice of the Florida Suncoast began it's second week in Joburg SA, with a visit at the Hospice Association of  the Witwatersrand facilities located at number 50, 2nd Avenue, Houghton. 

In the picture at right, Eugeny Maraba, CPL Head of Department, (center) can be seen greeting members of our group, including, (from left) Roxie Smith, LeaAnn Horton, Cathy Lasky, (far right) Laura Mosby, Dr. Stacy Orloff, and Dr. Amy Post-Grady, (background) as they begin their tour.

A highlight of this morning's tour was a visit to the office of Arlene Angel, Intake/Patient 
Accounts Manager. With office phones ringing off the hook, Arlene, (at far left) took  time out of her busy morning to share with the group how her department manages the current patient census.  Members of the team, (right) had many questions for Ms. Angel. They were particularly interested in the contrasts between the Soweto and Houghton operations. 

After the tour, our team members joined some of the Hospice Sisters for patient visits. We'll post the stories and pictures of those visits as they return.

Learning from an Expert

By: Stacy Orloff

There are many hospice and palliative care leaders in South Africa.  We had an amazing opportunity to spend all day Saturday with one of the long time leaders in the South African hospice and palliative care movement- Barbara Campbell-Ker.  Barbara is the former CEO of the Hospice Association of the Witwatersrand (our sister hospice).  Barbara spent the day with us, first at Constitutional Hill, and then hosting us, along with her husband James, at their home for afternoon tea and dinner.  Barbara is a long time board member of national hospice associations and took some important time to educate all of us about national hospice and palliative care efforts in South Africa.  It was very important for us to get this perspective and we’re very appreciative of Barbara sharing her legacy with us.

Sparrow Orphanage visit

By: Roxie Smith

Greetings everyone! Last Thursday was such a full and enriching day. After touring the children’s wards at Baragwanath Hospital, we visited Sparrow, an orphanage for children with HIV/AIDS.  When the bus pulled up to the entrance we knew we were some place very special.

Sparrow is a village of cluster homes that look like igloos with narrow streets between where the children play and ride around on wheeled toys. As we toured the grounds, we could hear children singing in one of the cluster homes. You can immediately see how loved and well cared for these children are. Each house mother in a cluster home oversees the care of 24 children. The village houses 300 patients; 200 of these are children. Some children come to the center with HIV positive parents and the idea was to keep families together for as long as possible. The children remain after the parent’s pass on. With ARVs, children’s health and prognosis are much improved, and they are allowed to stay until the age of 18.

We were fortunate to meet the founder of Sparrow who just happened to be on the property during our visit. I was very inspired by her story. She began on faith with few resources because she saw the tremendous need. Through unwavering trust that she could dream this village into existence, she knocked on doors and raised the necessary funds to begin. She started this project as an older woman seeking to identify how she should spend the last part of her life in making a real difference. It is the same question I have been asking myself since retirement. Her picture is going to be posted on my refrigerator as a reminder of what we are capable of.

Love to all of you.    Roxie

Sunday, May 10, 2009

Soweto Hospice home visit

One Patient at a Time

Dr. Amy and I visited Soweto Hospice patient homes and saw the conditions that the Soweto Hospice sisters (nurses) and community care workers (like our home health aides) are confronting when caring for their patients. The sisters go over medications with their patients and evaluate their patient's status. They travel by car with their community care worker. Sisters see their patients about once a week. They also deliver food to patients who would otherwise not have anything to eat.

We encountered one patient who was in a particularly desperate situation. Her neighbor greeted us and told us of how badly things were going. 

She has had a stroke, has AIDS and is bedridden. She is unable to get out of bed on her own. Her neighbor brings her something to eat in the morning, but it is very little. There is no food in the home. The food the Soweto Hospice brings this patient is stolen by people living around her. There is no one in the home who will care for her and she has no way of caring for herself. 

Her community care worker is able to visit her two to three times a week and change her clothing and sparse linens. Community care workers visit their patients as often as possible but their case loads are high and they travel on foot. In between these visits this patient lies in bed and listens to a radio.

When we arrived at the home we were almost overcome with the stench of excrement. It had been three days since the last home care visit and the patient had been lying in bed since then unable to get out of bed. Her clothes were soiled and so was her bed. There were no dry clothes in her home. Dr. Amy, sister and community care worker bathed her and put a new diaper on her and put the least damp clothing on her. They turned her mattress over so the wettest side was on the bottom and replaced her linens with what was available.

The Soweto Hospice is reevaluating this patient's situation and is trying to place her in a long term care facility (similar to a nursing home).  

An update:  
Three days later at the weekly clinical forum meeting (similar to our interdisciplinary team meetings back home) that consisted of doctor, nurse, social worker and administrative staff, we discussed this very unfortunate patient.  All disciplines contributed to the discussion and a care plan was made.  Fortunately, a team member has a connection with one of the long term care facilities and planned to call her personally to ask for admission for this patient.  We also hope to bring her into the inpatient unit for respite while the final details of her transfer are arranged.  Before my eyes, this dedicated team of hospice individuals is working hard to improve lives one patient at a time.  
Amy Post-Grady, D.O.


Saturday, May 9, 2009

Mapetla Kids


Mapetla day care center visit

Who knew that Soweto Hospice is also caring for the children of the patients they serve?  Mapetla is a day care center providing childcare services and education to the children of hospice patients.  All of the kids attending the center have a parent or relative who has been cared for by hospice.  Many have parents that died of HIV/AIDS and themselves have HIV/AIDS.   South Africa has a program where children under the age of 6 have access to free medical care to treat their HIV/AIDS.   Mapetla currently cares for 105 children between the ages of 1 ½ to 6 years.  Transportation to and from school is provided as well as meals at no cost to the family. 

We spent some time drawing pictures with the 5-6 years old.  They drew pictures of themselves, their school and families.  I presented them with some beautiful hand puppets made by my son’s preschool class in Tampa with the assistance of his teacher, Ms. Patti.  Each puppet displayed a picture of the student that created it with the words “From your friend in America”.  As you can see from the picture above, they loved them.  These children were an absolute joy and captured our hearts. 


Feeding our stomachs and our souls

By Stacy Orloff

For four days we have had a wonderful hot lunch prepared for us by the kitchen staff of the Soweto Hospice.  Every day when we returned from our day out in Soweto, the kitchen staff would be waiting for us.  Into our room they would come, bringing platters of hot and cold food.  As they entered the room, the kitchen staff would greet us, calling us Honey and Lovey, asking how our day was.  We were greeted with hugs and smiles.  As we ate our last meal with them on Thursday, we told the kitchen staff that we knew the ‘best cooks in all of South Africa were in the hospice kitchen.’   We are so thankful for the loving way they took care of us.   

Friday, May 8, 2009

Maria and Dudu with patient and grandaughter

By Laura Mosby

Wow what an experience and I just really don’t know where to start. By far the most moving experience so far has been the home visits we went on with the Sisters (nurses) on Monday. I went with Maria. What a little spitfire. She was such a delight to be with. We shared a fierce sense of humor and compassion for the patients. We quickly became buddies and I learned so much from her. She has been a Hospice nurse for over 20 years and knows her patients and community very well. She has such an easy way and warmth with her patients, the community and us, her guests. I was so impressed with her openness to talk about her struggles in the field and the plight of the community. When I asked her about her wish list for her patients and coworkers. She said she wished for food for her patients and umbrellas for her coworkers.

DuDu the Community Care Worker, like our Home Health Aides, works alongside Maria and walks approximately 7 miles each day from patient to patient. Oftentimes in the rain or blazing sun. She only makes about $100 a month and cannot afford transportation. This is the case for all the Community Care Workers. With this being such a basic need, the next day we were able to buy 30 umbrellas. We gifted them along with a little cash for transport, to the Community Care Workers during a Support Meeting we facilitated. They were so appreciative you just would not believe it. My how little things can go a long way.

These women are phenomenal in their dedication and advocacy to patients and their community. The love they feel and share is evident in everything they do. They carry joy in their hearts as they face tragic and difficult situations and every time left the patients feeling demonstratively better for their visits. It was a great honor to walk alongside them.

I meet 5 patients with very interesting stories. Some very sad cases (See Roxie’s earlier post), some inspirational, but all striving to live the best life they can, given the conditions they endure. I met a grandmother with severe pain issues more concerned about who will care for her family, including her 2 year old granddaughter, once she dies. She is the only source of income.

I met a male patient with AIDS who lives with his brother and sister in the family home. His family has abandoned him due to his illness. They openly chastise him and will not provide meals or care for him due to the stigma of HIV/AIDS. He has become an advocate in the community to increase awareness and education but lives in a lonely home. When I asked him if he could have one wish what it would be, he answered peace and communication in his home. Not a cure, not a different financial situation…he wants the love of his family. Made me take pause.

The power of human relationships to feed our spirits…to give or to take away. May we all try to give, even when it is difficult or frightening, or uncomfortable.


Keep it small

written by Dr. Stacy Orloff

It’s easy to get overwhelmed… every where I look I see ‘big’.  Overwhelming poverty; too full hospital beds (sometimes with two children in one bed); a one room shack with no electricity or running water; a granny caring for her four year old grandson; an AIDS pandemic that has created thousands of orphaned children.

Then, I see small.  A pediatrician who knew there was a better way to care for children.  She began as a medical student picketing in front of the hospital advocating for ARVs for children.  She continued her advocacy and after much work now runs a very large and successful pediatric palliative care program. Her next step- moving to Cape Town to establish an academic pediatric palliative care program to teach pediatricians across South Africa.  I also saw a nurse who felt called to do something different with her life and started caring for one person infected with HIV who now can proudly ‘show off’ the program she started; a hospice program for HIV positive children. This residential program cares for 240 orphaned HIV + children, allowing them to live there until adulthood.  I also saw hospice nursing sisters and community care workers who, every day, visit their patients, giving them food, medicine, and love.  Their visits do more than just provide food and medicine.  I have personally seen hospice patients regain their sense of hope and feeling of worth because of the love given to them; equally I have seen the nursing sister and community care worker ‘filled up’ again because of the love given to them by their patient.

So, what have I learned?  Not to focus on the big- I can’t make the whole problem go away.  I can make a piece of it better.  So, for my remaining days here I am committed to keeping it small.  I can do that.


Thursday, May 7, 2009

We're Connected!!

I'm sitting in a Joburg pub and my computer battery is almost gone. But I just had to let everyone know that after three days of trying to get a mobile internet connection we have finally succeeded!
A big thank you to Ceo Kanes in the Business Solutions department of MTN. He never gave up until he found a way to make the modem you see in the lower left of this picture work.  This means we should be able to upload a lot more information about our time here.  Stay tuned, because we have some great stories to share!

A Mother's Plight

From the moment we entered Ntsonki’s one room shack, my eyes were riveted. With advanced AIDS and in a weakened condition, she is the sole caregiver for her infant twins. Her living space is approximately the size of two double beds. She has no electricity and no means of keeping milk for the babies. In the ceiling, rags and plastic bags were wedged between cracks of wood to keep out the draft. When we arrived, she had a metal cylinder of hot coals at the foot of her bed, preparing to cook. She had made the coals by drying mud in the sun.

            The nursing sister told us that Ntsonki often cries. Who will take her children when she is gone? She has no family support, and this is the typical loneliness suffered by those with AIDS in Africa, as the stigma is strong.

            The Hospice nurse left Ntsoknki a food parcel with beans and rice, flour and other nutritional items. The American team gave her 100 Rand, the result of our fundraising. She clutched this tightly and whispered her thank you repeatedly.

            We made other visits equally compelling, but it is this woman’s eyes that I will most remember.

            Shane and Lori, thank you for your messages!!


Wednesday, May 6, 2009

More Photos Available

Exciting news everyone!

Cathy has uploaded new photos to the Soweto Trip 2009 photo album. The camera she is using has a GPS device attached to it so it is logging the location of every photo taken. The picasa photo album we are using can then utilize this information to place each photo on google maps.

You can use the Images & Map link on the main menu above or follow this link:

Go check it out!

Tour of Soweto Hospice

The Soweto Hospice provides many services to their community including in patient facilities and adult daycare.

The facilities are very clean and bright and offer patients comfortable surroundings. The children are lovingly cared for and receive compassionate attention. They were happy to receive the dolls which had been knitted by Pat Sergeant, one of our nurses.

Delicious meals are served to pediatric and adult in patients and to the adults who come to daycare by the friendly kitchen staff.

Tuesday, May 5, 2009

Wow, wow, wow

I'm not sure where to start... I can't believe today is only our second day in Soweto as I feel as though we're among dear friends already. The staff have been so welcoming and inviting. We're greeted with smiles and hugs. The nursing sisters were overjoyed with the medical supplies we provided. I was overjoyed how easy it was getting the supply bags through customs at the airport! The customs officer did question me as he saw how many bags we had. I smiled (as much as I could after being up for most of the last 24 plus hours-didn't sleep much on the plane- but that's another story!) and told him we were visiting Jo-berg for two weeks and thankfully he waved us through.

We spent most of Monday visiting patients. I think it will take us awhile to sort through the myriad of feelings we have in order to share all of them with you. Our sister hospice is doing amazing work, providing food parcels, and lots and lots of love to patients who are living with so little. Hopefully soon we'll have more pictures on the site for you to see.

Someone on our trip asked me if I saw much difference between this trip and our trip in 2007. Soweto is changing some. They are so proud of hosting the 2010 World Cup soccer and there is much road construction to to prepare for this. Hotels are being built in order to meet the expected demand. That is very good for the economy. Unfortunately the extreme poverty and needs of patients is no better. I am very proud to say, though, that our sister hospice is working very very hard to slowly chip away at this.

We've had some very interesting conversations with our South African colleagues about this. The reasons for this poverty and suffering are very complicated- political, social, personal- etc. I'm not sure that it is up to us to solve or even truly understand. We're here to lend a hand and make a difference. As one patient said to us yesterday when Roxie, Laura and I were visiting with Sister Maria, "Don't forget about me."

How can we...

More to come,

Monday, May 4, 2009

Opening Bags

Here's a little footage of the supplies we brought to the Soweto Hospice. We were encouraged by the enthusiastic gratitude we received. We had a full day visiting patients and families. More to come later.

Bus is leaving...

The bus is leaving to take us to see some of Soweto Hospice's patients. I just have time to post some pictures of the Soweto sign and an event that happened a few minutes ago. The Staff and our team opened the 7 bags of medical supplies donated by the Hospice of the Florida Suncoast. I wish I could share with you the words of appreciation that the staff shared as they oped these bags. They really need this kind of help. Thank you to all of you who made this contribution possible!!

Day 1, We arrived at the Soweto Hospice.

From the moment we arrived at the front door of Soweto Hospice, we have been embraced and welcomed by the entire staff of this special place.

During a tour of the facility, which includes adult patient rooms and a pediatric ward, we took some great pictures and video. As soon as we figure out the process of downloading these images with our available connection, we will start to post these images.

We are very anxious to share with all of you the incredible work being done here. Please consider making a donation to help the effort here.

Sunday, May 3, 2009

Exotic Dakar

We've arrived in exotic Dakar. Unfortunately we won't be able to see much of the city. It's 4:50 am local time. We are not allowed to deplane.

Here is Amy getting to know some of her seat mates

Saturday, May 2, 2009

From the Atlanta terminal

Here are some of our intrepid Team in Atlnta airport as we prepare to board Delta Flt. 34

-- Post From My iPhone
Stephen Lasky