Airman Magazine: Her Body Is A Battlefield
Carol Mulumba’s eyes are bright; the pure white contrasting dramatically with deep-brown irises. Her skin is bright and smooth and her lips are rosy. This wasn’t always so. Until a few months ago, the 8-year-old’s eyes were yellowed, her skin was pale and even her lips lacked any resemblance to the lips of a healthy child. She always appeared sick.
Before her seventh birthday, a deadly monster stalked Carol. A monster called sickle cell disease, a usually terminal illness that causes blood cells to be malformed. Shaped more like crescents than the flexible doughnuts of healthy red blood cells, they clogged her capillaries, causing hemorrhages and pain.
“To me, sickle cell disease is one of the worst diseases a child could go through,” said Maj. (Dr.) Della Howell, Carol’s oncologist at Wilford Hall Medical Center at Lackland Air Force Base, Texas. “It’s a chronic illness. You never know what’s going to happen on a day-to-day basis.”
The uncertainty of the disease affected the entire Mulumba family, giving no rest to Carol’s mother, Capt. Lucky Mulumba, a nurse at Wilford Hall. Captain Mulumba cared for patients at the hospital and came home to nurse her daughter. Like a monster continually stalking the family, the disease was a part of Captain Mulumba’s life, shadowing her family even before Carol was conceived.
the disease was a part of Captain Mulumba’s life, shadowing her family even before Carol was conceived
Perceptions of a killer
Captain Mulumba and her husband Abdullah were born in Uganda where the perception of sickle cell is much different than it is in the United States. Captain Mulumba said sickle cell disease there is treated like a social affliction that haunts entire families.
“If someone has sickle cell or gives birth to a child with sickle cell, the entire family is looked down upon,” she said. “Nobody wants to marry a woman from a family with sickle cell; nobody wants to associate with them. The children are treated like walking corpses. They aren’t shown affection. They don’t go to school. They aren’t alive.”
Sometimes this social perception leads to gruesome and traumatizing methods of cleansing the family of the disease.
“In Uganda, children with sickle cell are neglected and regarded as already dead,” Captain Mulumba said. “When women find out their baby has the disease, the husbands run away or the village abandons the child so nobody finds out.”
Life in Uganda for children with sickle cell is often a life without relief from the pain and complications the disease brings. Captain Mulumba said people there often treat sickle cell with folk medicine cures, taking children to witch doctors or shamans for treatment. When these cures don’t work on the children, they wait to die. Death by sickle cell is slow and painful as the disease shuts down organs and kills limbs.
For Captain Mulumba and her husband, sickle cell disease used to carry these social connotations. Captain Mulumba and her husband immigrated to the United States, leaving the rural Ugandan attitude toward sickle cell disease behind. In America, Captain Mulumba pursued a civilian career in nursing. However, she had no idea the disease would follow her to the U.S. and attack her world.
While Captain Mulumba worked as a nurse in Maryland, the couple found out they were expecting a baby. They joyfully welcomed Carol into the world on May 31, 2001.The new family left the hospital not knowing the lurking monster had struck.
“Just three days after Carol was born, I got a registered letter in the mail from the state saying Carol had sickle cell disease,” Captain Mulumba recalled.
She said she read and re-read the letter, not believing that it could be true. In the following weeks and months, she had Carol tested over and over as her childhood perceptions of the disease began to push her into a deepening depression.
She knew Carol’s future would be full of pain, suffering and vain hopes of finding a cure. As time went by, she found the strength and support to help her daughter and family in what she considered an unlikely place, the U.S. Air Force.
“Growing up in Uganda under the regime of Idi Amin, soldiers weren’t seen as good. When they came to our village, we would hide in the jungle at night,” she said. Despite her childhood fear of the military, Captain Mulumba saw the Air Force as a way to support her family and provide relief for Carol.
“I never dreamed what the Air Force would do to help my baby,” she said.
Captain Mulumba said civilian health insurers refused to cover Carol, but the Air Force “took us 100 percent the way we were,” and never even questioned the care Carol needed.
Support for the suffering
After graduating from Officer Training School, then 2nd Lt. Mulumba received orders for San Antonio. It was at this first duty station, when Carol was at her worst, that Captain Mulumba got the support and help she needed to care for Carol.
“The Air Force did so much to help,” Captain Mulumba said, noting that the medical staff addressed Carol’s needs in every way. She also said her chain of command tailored her schedule to work around Carol’s needs.
As the disease ravaged Carol’s body, she was put on increasingly more powerful pain medications. At one point she was taking pure morphine to combat the pain. However, the drug had devastating side effects, and Carol had to take more drugs to relieve them. Eventually, even morphine didn’t work.
Captain Mulumba said during this time Carol would have good days and bad days. When the disease caused an episode, the family focus shifted to care for the child writhing in pain.
“There were days we would sleep on air mattresses in the living room to comfort Carol,” Captain Mulumba said. “We always had a bag packed to take Carol to the hospital. I don’t know how many times we took her in. I’ve lost count.”
Though the disease stunted her growth and caused Carol to be about the size of a toddler at the age of 7, Carol’s mind grew with the realization of what her future with the monster disease held.
Carol’s mother remembers a sad, profound moment while watching the funeral of President Gerald Ford. Carol saw the procession and ceremony as her own future.
“I remember her saying to me, ‘Momma, will I be in a casket like that?’” Captain Mulumba said. “‘What makes you ask that?’ I asked her. ‘The monster,’ she said.”
As Carol matured, she began to find new ways of describing to her doctors what the pain felt like.
“It feels like a punch,” Carol would say about the pain in her head. “A kick,” she said describing the pain level in her abdomen. “Stuck under rocks,” she said about the pain in her feet.
As Carol’s pain increased and episodes occurred more frequently, the family adjusted and accepted it as an unalterable part of life. Until one day when they were given the chance to fight and defeat the monster.
A Cure
Since sickle cell disease is genetic, there is no virus or bacteria available to eradicate it. The disease stems from Carol’s own body and its production of misshapen blood cells. To cure the disease, doctors needed to replace Carol’s blood and blood-producing bone marrow with someone else’s. That’s exactly what they did.
Wilford Hall doctors, working with doctors from the Metropolitan Methodist Hospital in San Antonio, determined Carol was a perfect candidate for the radical new treatment. A handful of sickle cell patients had been cured through a combination of chemotherapy and bone marrow transplants. This was the only hope for Carol, but the treatment carried its own set of daunting obstacles and life-threatening dangers.
The biggest obstacle was finding a donor whose bone marrow was a close enough match. Carol’s savior was her own brother Mark. Amazingly, her baby sister Aliah was a perfect match as well, but 5-year-old Mark was chosen as a better candidate.
“Mark is my hero child,” said Captain Mulumba. “Civilian doctors said I shouldn’t be pregnant again because of the sickle cell.”
In fact, she said she was advised to terminate the pregnancy. Captain Mulumba said she and her husband decided that was not an option and Mark was born free of the disease. In fact, blood from the umbilical cord was stored for possible future use in treating Carol.
Five years later, the blood was used in the treatments that cured Carol, but the treatment didn’t come without risks.
An aggressive chemotherapy treatment was needed to kill off Carol’s sickle cell-producing bone marrow before new bone marrow could replace it. This meant Carol would be completely without an immune system since bone marrow also produces white blood cells. Carol could die from something as simple as a common cold.
Air Force doctors prepared her for the bone marrow and blood transfusion in August 2008. After monitoring her blood, she was given the first dose of chemotherapy on Oct. 7, 2008. She experienced the side effects of chemotherapy almost immediately.
Captain Mulumba noted on Carol’s online journal that she had severe abdominal pains, headaches, chills, itching and hives. For a child whose life was defined by pain, these setbacks were minor compared to the emotional stress of being quarantined to a hospital room.
“Carol became angry,” Captain Mulumba said. “I’ve never seen her so angry. She was irritable and quiet.” She also recalled how lonely and upset Mark was. The young hero persistently asked about his sister and was consumed with worry, sometimes refusing to even eat or sleep.
Carol got a break from chemotherapy and was able to go home Oct. 11, 2008 only to return a week later for more chemotherapy. On Oct. 29, 2008, Mark was admitted to the hospital and a liter of bone marrow was harvested from his femur. Over several hours it was transplanted into Carol. The next day Carol received the blood that was saved from her brother’s birth.
Victory
Carol’s transplant was a success. Mark’s bone marrow now lives within Carol’s body and produces healthy blood. Tests over the course of a year show no rejection of Mark’s tissue, no evidence of sickle cell and no reason to believe it will ever come back. Carol is cured.
Brother and sister now have a bond few people can understand. A piece of Mark lives within Carol, giving her life and freedom from pain.
“Look at her eyes; so beautiful,” her mother said. “See her lips . . . her skin? It never looked like that with sickle cell. Even her personality has changed.”
Indeed, the entire family is changed. The mattresses are no longer in the living room. The family can sleep without fearing a visit to the emergency room.
The monster is vanquished.
“The monster is in the trash. It’s in jail,” Carol said almost haphazardly. She is already forgetting her disease, engrossed in the activities of a healthy 8-year-old for the first time.
Living with sickle cell in one form or another throughout their lives, the Mulumbas are thankful to the Air Force to finally be free from the disease.
“We couldn’t have done it without the military,” Captain Mulumba said, noting the costs associated with extended hospital stays, treatments, tests and follow-up care would have been prohibitive without her military health benefits. “I think the Air Force made this happen. I’m so grateful I’m part of it. I’ll stay in and give back.”
The Mulumba family is giving back by working to provide relief and education to communities struggling with sickle cell disease. They started a non-profit foundation to educate and provide relief for their home country known as the Uganda -American Sickle Cell Rescue Fund.
Carol, walking proof that the monster doesn’t always win, has a burning desire to help other children with sickle cell. Next year Carol’s dream of raising awareness about this horrible disease will come true when she hopes to meet President Barack Obama through The Make-A-Wish Foundation.
“When I meet the president I want to tell him about sickle cell disease,” Carol said.
The sickle cell monster didn’t find easy prey with the Mulumba family. Instead, the devastating disease brought a family closer and united them in a cause. Perhaps one day, through the work of Carol, her parents and some dedicated Air Force and civilian doctors, sickle cell disease may exist only in textbooks. Children with the disease may have a future of bright eyes, rosy skin and healthy smiles.
[...] http://www.afjournalist.com/?p=215After graduating from Officer Training School, then 2nd Lt. Mulumba received orders for San Antonio. It was at this first duty station, when Carol was at her worst, that Captain Mulumba got the support and help she needed to care for Carol. … Captain Mulumba said she and her husband decided that was not an option and Mark was born free of the disease. In fact, blood from the umbilical cord was stored for possible future use in treating Carol. … [...]