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One Mother's Caregiving Story
Like any first-time mom, Tennille was concerned when her son, Jaiden, developed severe flu-like symptoms overnight. Little Jaiden’s illness persisted over the weeks that followed, leading to three emergency room visits in as many months. A series of tests finally ruled out all other possibilities except a rare inherited immune disorder. This disease causes multiple medical problems that affect the body all at once; if untreated it is fatal. Jaiden’s only hope was a bone marrow or cord blood transplant. Maintaining a normal routineJaiden entered the hospital in March 2004 for his transplant. He was just nine months old. During Jaiden’s hospital stay, Tennille did what she could to maintain a normal routine for her son. She gave him his baths and provided his primary care. Tennille even checked his blood sugar herself, as Jaiden is diabetic. She said her son’s hospital room was “very baby friendly,” which was important to her since he was confined to his bed most of the time. Unfortunately, Jaiden’s transplant failed to engraft, meaning that his immune system didn’t make the transition to be made up entirely of donor cells.When doctors told Tennille that her son would need a second transplant, she recalls that “it only took me five minutes to decide,” reflecting on the life or death situation. “Either Jaiden would have another transplant, or a very short time left to live.” Sharing the careTennille, a social worker in Washington, D.C., had used all of her leave time from work to care for Jaiden during his first transplant. She had to get back to work to maintain the family’s health insurance. So after Jaiden’s second transplant, while Jaiden was still hospitalized, Tennille went back and forth to work from his bedside, spending nights at the hospital. Jaiden’s father, Ufundi, and other family and friends shared in Jaiden’s care, allowing Tennille some much needed time to rest. As it turned out, Jaiden was in the hospital for five months. Since he could not be left alone during this time, having a supportive network of helpers was essential.Being your child’s advocateThroughout her son’s transplant experience, Tennille kept a journal to keep track of Jaiden’s care and progress. She advises other parents to do the same: “Keep a log of everything that happens — who you talk to, what you talk about, when you talk to them.” Of being a caregiver, she says, “You have to be really involved; don’t take a ‘sit-back’ role. Don’t be scared to speak up. You have to be your child’s advocate. Ask a lot of questions.”Transitioning homeThe second transplant was a complete success. For this family, the transition home was a challenge. Jaiden was an infant when his treatment began. “It was a matter of getting Jaiden comfortable being back home. In the hospital, people were coming in and out at all hours of the day,” said Tennille. Back home, Jaiden’s immune system hadn’t quite recovered to the point where he could return to day care, so his grandfather came to live with the family to care for Jaiden while Tennille and Ufundi were at work. To help establish a home routine and to ensure that all the details of Jaiden’s care were covered, Tennille created a detailed schedule of his medications and follow-up appointments. The schedule helped this busy family stay organized.Today, Jaiden is “a normal kid,” according to mom Tennille. Jaiden “loves his medicine, even though they’re pretty nasty, and I’ve tasted all of them!” He wakes at 5:30 a.m. and heads to the kitchen, ready for his first doses of the morning. He is active around the house and at a local playground throughout the day. Of the entire transplant experience, Tennille says, “Trust your instincts; you know your child best.” |
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