Children’s Cancer Institute

Oct 21 2012

The Mulago Children’s Cancer Institute is where, so far, I have spent most of my time. Josephine is the nurse who goes there and I have found that it is helpful to assist her as there are very many children on hospice there. What she said to me the first day is really, all of these children should be on hospice for pain control. When we make visits to either home or hospital we anticipate the medications the patient being seen will need and bring that. Morphine is dispensed in three concentrations, 5mg per 5 mls, 50 mg per 5 mls and 100 mg per 5 mls. The different strengths are color coded, green, red, blue, and put into 500 ml plastic recycled water bottles. The label will indicate the concentration, the current dose, the volume dispensed and the patient’s name. The nurses carry a kit as well with the most needed and frequently used medications, Colace, dexamethasone, metronidazole, haloperidol, to name a few. Most of the nurses currently working for HAU have gone through the 9 month training required to be prescribers of morphine.

We walk into the ward that is crowded with beds and cribs all containing a very sick child. Parents squeeze into the small space between beds. I notice one woman lying on the floor next to her sick child’s bed nursing a baby. There are families and children outside sitting on steps, leaning against the walls. I notice that behind the nurse’s station, next to the large red contaminated waste container, is lying another child and his mother. Seemingly the nurse’s station is not used as such.

Josephine is whisked away by the hand by one of the doctors to go see a patient who is in pain. The Children’s Cancer Institute has run out of morphine and the child, who is really a young woman of 19, is crying in pain. She is familiar to me as I saw her at the Mulago hospital a few days ago. They have not gotten a definitive diagnosis yet. She has tumors behind her right eye, her scalp and right foot. These are grossly disfiguring and I am told she has essentially lost her site in the right eye and is now having difficulty seeing out of her left. These tumors remind me of the disfigurement of so many of the children here who have Burkett’s Lymphoma, which is an AIDs related cancer. As I walk through the wards it seems to be what most of the kids have here. Luckily this patient is enrolled in Little hospice Hoima an affiliate of HAU and also that Josephine always brings extra morphine with her as frequently there are hospice patients at the institute that were not expected. She gives our patient 7.5 mg of liquid morphine and she is pain free within a short time. Her caregiver who is her sister looks to be about 16. Apparently the parents have both died of AIDS and there is only an aunt who visits infrequently.

We visit Joseph, who I had met at an earlier visit. Joseph is 4 years old with Burkett’s lymphoma. He has literally the most horrendous tumor I have ever seen. It is overtaking nearly his whole face. There is a small area on one side of his mouth that is still viable and which he can take small amounts of liquids. His tumor is fungated and the metronidazole tablets that are crushed and placed on the wound to diminish the odor of rotting flesh have limited effectiveness. His parents are with him. His dad tells me that they took another biopsy today as the chemotherapy is obviously not working. They are discharging him today to return in 2 weeks for the biopsy results. Their home is hours away and they have no money for the bus ride. His dad tells me that they have been away from home for many weeks and that it would mean so much to them and to Joseph to go home to their village. Hospice tries to assist people with transportation costs when they can but Josephine did not bring any money for this. Between the young doctor volunteer and myself we easily come up with the 15000 shillings ($ 6) for their ride home. Joseph is so happy to be going home that he finds the strength to ambulate out the door which is the first time in ages that he has had the ability to stand. I watch in wonder at the idea of taking this very sick child on a bus for hours. But people in Africa are tough and do what must be done with little complaint. We make sure that he has enough medications, especially morphine to last until they return.

Burkett’s Lymphoma is a pretty curable cancer if caught and treated early enough. Mulago hospital in Kampala is the only place to receive chemotherapy or radiotherapy in all of Uganda. As I have heard it said, to tell a family who lives in a village far away that they must go to Kampala for treatment is like telling them to go to London. Many people have never left their village and very few have the funds to travel, let alone pay for treatment. The only assistance comes minimally from a few organizations. Hospice Africa Uganda attempts to pay for a child’s first chemotherapy round. Their resources are very limited but they do what they can. I can only imagine the horror of being told that my child had a potentially curable disease but treatment was inaccessible to them because I could not afford the cost. “It is very difficult,” Josephine repeats many times today with a certain resignation in her voice.

I asked around about the morphine. How could this happen that they ran out! Where does it come from and why would it not be readily available to suffering children. I was absolutely appalled and very angry. I directed this anger at the first world countries, like my own, that could, without conscience go into a country like Uganda, exploit its resources for profit and turn a blind eye to the suffering of that countries children. Morphine is very cheap. 40 American cents can keep most cancer patients pain free for a week.

It was the next day before I got any insight into this problem and as with most problems related to the distribution of resources, especially in a third world country, it is complicated. We were invited to lunch at Dr Annes home on Saturday. There I met a woman who works for an NGO that monitors the distribution of morphine in Africa. This young woman was working specifically here in Uganda. She described some of the problems she has come up against, from lack of ink cartridges for making labels, to running out of recycled water bottles, to shipments of the powder being mysteriously half of what they were supposed to be. And then there is the general lack of organization and infrastructure that seem to plague all of Africa. She does not believe there is much of a problem with diversion, as far as she can tell it is not sold on the streets. Uganda, however is much better off than most of the rest of Africa where there is no morphine at all. Many African countries resist the use of morphine as being a dangerously addictive drug. She specifically sites a hospice she visited in Rwanda where the nurses where so frustrated trying to care for the terminally ill without the ability to control pain. After much education and negotiating with the Ugandan government (much done by HAU), morphine has become increasingly available here. As it turns out Hospice Africa Uganda is the only manufacturer of morphine from the powder that is brought into the country. They manufacture it and then sell it for a very nominal profit to those who then distribute it to the hospitals. They hope that with the small profit they will be able to continue the outreach and education regarding pain control in Uganda and in time to other African countries as well. She tells me that she did not know that the Childrens cancer institute ran out of morphine but promises to look into it right away.

At this lunch we also met other dedicated NGO workers who are assisting the Ugandan people. One man said,” I came to work here for 6 months and I am still here 9 years later.” He is providing education for the children, many of whom are orphans, in the slum here in Kampala. Another man works with the refugees that are still living in the northern part of the country. There were 2 Irish doctors present who came to volunteer their time as well. I felt privileged to be in such a group of people. The two NGO men were there with their families and there were beautiful little, very healthy looking, children running around everywhere. It was a good reprieve from the Children’s Cancer Institute and I wonder how many of the same children will be there on Monday.

4 responses so far

  1. WOW. Your heart must be breaking every day and you are shedding many tears. Very hard work you are doing and things and people you will never forget.

  2. Amazing to read Maureen, sure alters my perspective. Thanks so much for sharing!

  3. Dear Maureen,
    Your posts are incredibly moving. Everything I’ve worried about today in my world seems so very petty and insignificant. We know this is what the world is made of, but to read your first hand raw experiences really touches my heart. It seems so unfair that people are dealt such different fates based only on mere chance as to where and when they are born. Thank you for posting and I hope you are considering a book when you get home. Stay strong.
    Hugs to you and Sequoyah

  4. Dearest Maureen, The suffering you are witness to is heartbreaking. Your expression of courage, humility and outrage is profound. It’s enough to make a secular humanist pray for your health and safety. I was so glad to read of the medications to alleviate suffering readily available in Uganda, as I had not expected it, but alas, a shortage appears. Stay well, I can see that your eyes, arms and heart are open, as always. Love to you, Mary

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