The Burkitt lymphoma project continues with great success at St. Mary’s Hospital, Lacor in Uganda. So far, 157 children have been treated. In September of 2013, my wife, Emma and I came to St Mary’s to help with the project work. Emma, a pediatrician, is working on the ward caring for the children, while, I support the project team with data collection. One of the priorities was the long-term follow-up of children who had completed treatment to ensure that they were alive and well and identify how we could further improve upon patient follow up.
The majority of the children live in Northern Uganda where travel is a challenge - roads are not always in good condition and travel to St Mary’s can be cost-prohibitive for our families. I decided to map out the home locations of all of our patients and two facts stood out. Two thirds of our patients live over 100 kilometers from the hospital and the patient who lives the farthest away travels over 300 kilometers to reach the hospital!
After completing treatment, the children are asked to return for follow-up initially on a monthly basis and then less frequently as time passes. While some, impressively, attend as planned, many children do not return. As the parents are often poor, it made me wonder if I was a parent and cash was extremely tight, would I think that making a journey of around 150 kilometers was worth it when I knew (or thought) my child was well? With this in mind, we decided, as a project team, to actually travel to the homes to find these "lost" patients who hadn’t come back, to ensure they were doing well.
Whilst mapping the patients, we found areas with high rates of "lost-to-follow-up" and identified 25 children that we thought we could reach out to. As a result of the local communities’ hospitality and willingness to help, we were able to successfully trace 15 patients to their home villages and meet with them and provide a “check-up”. Sadly, two children had died and one had recently become unwell. Having discovered this child, we were able to arrange for him to return rapidly to St Mary’s Hospital where he is, again, receiving treatment and improving. Twelve other children were found to be alive and doing very well. It was brilliant watching the children run around and play with their siblings and they were so proud to tell us they were attending school again!
Amongst the patients we found was the first patient treated with this therapy at St Mary's in 2010. Akello successfully completed treatment for her Burkitt lymphoma and is now a teenager, attending school and doing very well with no lasting signs of illness. She posed for a picture with her family who were delighted to see us and incredibly appreciative that the hospital team had come to their home to see her. We were welcomed like this wherever we visited, offered Ugandan hospitality - including a live chicken to take away when we did not have time to sit and eat with a family, and were able to see some of the beautiful countryside as we travelled.
Clearly, there is a significant cost involved in this venture given the distances covered by car, but it is vital when all other means of contact have failed. Checking on progress is integral to the success of the project and the development of new treatment plans; it gives clear information about progress, allows problems to be identified, builds rapport with the community and brings joy to the families, reminding them that they are remembered and care always continues – even after treatment. Without funds, it would not be possible to provide this support.
We hugely appreciate all your donations so thank you, or as the children here say, Apwoyo!
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