I have had the chance, over the past month, to spend a couple of mornings rounding and chatting with Dr. Jeremy Slone, the Texas Children’s pediatric oncologist from Texas Children’s Cancer Center’s International Program based at Princess Marina. Batswana children, given a wealthier health care system, have much greater availability in terms of scans and access to chemotherapeutics than what I witnessed in Blantyre, Malawi. For procedures such as port placement (although many just rely on peripheral iv’s) and procedures deemed necessary and unaccessible in Botswana, Dr. Slone is able to petition the Ministry of Health for permission to cover the expense procedures and travel to neighboring Republic of South Africa.
The oncology ward is small, only 4 beds. While it is “separate” there is no door or true barrier separating these immunocompromised kids from any of the other 50 odd children in the ward. They do keep the infectious diarrhea patients at the other end! There is no clinic space so all sick visits or follow up visits are conducted on a wooden bench in the middle of the pediatric ward. Dr. Slone makes all his own chemo! What a rare, but very interesting opportunity to take part in daily chemo making. Despite Dr. Slone’s best efforts to hang warning signs, people leave their pens, notepads and whatever else in the chemo station like it’s no big deal!
Where all the chemo magic happens!
While I would have loved to spend more time with Dr. Slone, my time was limited given my HIV clinic responsibilities. Here is the link to a blog post, “No Children Should Have to Suffer Like This” he posted about a few of the patients I was able to round on one day I spent with him earlier in the month. I love gaining any and all first hand exposure to pediatric oncology in limited resource settings. I look forward to comparing what I saw with Dr. Slone to the norm in Rwanda. I still struggle to see where my love for peds heme/onc fits in my greater interest in the field of global health. Hopefully fellowship will allow me to figure it out!
Faith is seeing light in your heart when your eyes see only darkness
In memory of Brendan
Cancer sucks. It doesn’t matter how selfless your acts or the kindness of your soul, it doesn’t discriminate.
I have a couple friends in the fight of their lives at the moment. This one is for them…
Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.
Through blogging and the cancer community I have had the pleasure of getting to know the amazing, and multi talented, Carolyn Rubenstein. Carolyn is currently working on her PhD in clinical psychology at Harvard while keeping an amazing blog A Beautiful Ripple Effect, in addition to her work as the founder of CCC, a nonprofit that provides college scholarships to cancer survivors. She recently published the book Perseverance. Check out more of the wonderfulness Carolyn is working on at www.carolynrubenstein.com.
I had the distinct honor of participating in Carolyn’s “Living Your Vision” Series. She describes the purpose as one “to focus on the journey – the how – of unconventional success. The series emphasizes that life is truly a verb – not solely a string of accomplishments.”
Check out my interview with Carolyn
Wrap Up Africa Promo from Amanda Bontecou on Vimeo
Through the Livestrong Global Summit and the lovely Christine Mason Miller I have had the great fortune of getting to know Letha Sandison, the founder of Wrap of Africa.
Wrap Up Africa has an amazing opportunity before it, but it needs some help. Their building has become unstable and dangerous to remain using for long and that will not change in the near future. Serendipitously, there is a new building available in the same neighborhood. It is a wonderful opportunity as there are very few buildings that are within the hospital area that would be suitable for our uses. As the US Embassy funded this commercial space, there was oversight during its construction and it was built using good and safe building practices.
Wrap Up Africa teaches tailoring skills and train participants to make beautiful products, pay them a fair wage for what they create, and provide a market for what they produce. With the funds they earn, the tailors are able to meet many of the challenges they face with a cancer diagnosis such as obtaining food, lodging, transportation, and medical expenses including treatment. The profits from clothing sales are funneled back to support clinical and educational programs, helping participants and their children to have a better quality of life and to improve the health outcomes of future pediatric cancer patients in Uganda.
Wrap Up Africa has just been offered a complimentary membership to the Clinton Global Initiative and invited to attend their upcoming meeting in September. USAID is bringing buyers from large retailers out to visit the (hopefully new) facilities. WUA strives to provide hope, empowerment and support to Ugandan families struggling with cancer. WUA was founded in response to the growing and largely unrecognized needs of pediatric cancer patients in Uganda.
Christine Mason Miller is offering some amazing giveaways in conjunction to raising money for this amazing opportunity (check it out here). Every dollar helps! Please help this dream become a reality.
If you haven’t already heard about Notes Left Behind, take a minute to watch this video. This is an amazing story of a young child who lost her battle to cancer, but how she continued to love and inspire her family long after her time on earth through notes she secretly left.
As Movember draws to a close this week, and guys around the world get ready to shave their mo’s in the name of testicular and prostate cancer awareness, I couldn’t help but think about all the crazy shinanigans out there to raise awareness and funds for worthy causes.
A few of the other creative fundraisers that come to mind:
Hawks for the Homeless
Pints for Prostates
The Testicle Tour
The common denominator: dudes and alcohol!
A very good friend of mine, Kate, had a hell of year. She kicked cancer’s ass and won a National Championship race in cycling in 11 months time! Her “story” was recently featured on Livestrong.com and can be read here. Kate just happens to be a cycling coach at Carmichael Training Systems while getting her PhD, all of which she carried out from her cancer diagnosis through to being cancer free. There are plenty of Lance parallels in the article which are pretty humorous! I couldn’t be more proud of you Kate.
Friday is Livestrong Day! This year it is being celebrated around the globe as we try to bring greater awareness to the global cancer burden. Livestrong Day events are a way to help your friends and neighbors understand that fighting cancer isn’t just up to doctors and researchers—it’s up to all of us. Please take a minute to add or find an event, and join our cause!! www.livestrongaction.org/map
Today’s Livestrong blog post on events “outside of the box” featured my Livestrong Day project. Check it out here!
The final day of the Summit focused on stigma and the power of storytelling and digital medial to mobilize global action. Thomas Crampton, a digital media specialist, gave a very informative presentation on the keys of storytelling to facilitate change. He shared the below clip of Bill Clinton from the closing session of the Clinton Global Initiative in 2007 as an example of truly effective storytelling.
Some of the points Thomas Crampton made that I found most helpful include:
-They key to a telling a powerful story is to show, not tell
-All stories should include 4 main elements:
1. Person: never a generic character
2. Setting: A surprise is always good
3. Struggle: The crucial element that involves people through to the resolution
4. Resolution: Something is different, it has changed
-Stories should always be authentic, touching, real, and paint a picture
The Summit came to a close with Lance Armstrong and Doug Ulman leading a global cancer call to action. It was a very full three days, but I leave more inspired and driven than I arrived. We are not alone in this movement.
As a delegate from Thailand stated, “the work that will come out of this Summit will not be a program or a project- It will be a movement.”