Black boxes

There is something about giving my 3 year old a medication with a black box warning. Something scary. Something which requires every ounce of trust I have in a God who is overseeing and guiding my life and her life. Something which forces me to surrender the fears I have with it to Him.

Hannah Joy's thalassemia is not clear cut. It continuously makes me wonder, and second guess the medical decisions recommended for her. To live anemic? Or to live with controlled anemia but with the significant consequence of iron overload, requiring medication to counter the overload? It's not a determination which is easy to make. Hannah's hematologist is a worldwide expert. He has seen children who live in chronic anemic states. He sees the realities those children endure as they are adults. The realities are not easy. Things like pulmonary hypertension. Chronic pain and breaks from bones which try in vain to combat the anemia. Enlarged spleens. His recommendation is to keep Hannah as healthy as possible with transfusions to control the anemia and avoid these serious complications. There are some very promising trials of treatments on the horizon for her type of thalassemia, he says. So keep her transfused. Yet, with each transfusion, we are allowing toxic iron to build up in her body. Iron, so toxic, it would eventually build up in her heart if not treated. Ironically, even without transfusions, Hannah is at risk for developing iron overload just based on the type of thalassemia she has. Eating foods with iron content or fortified with iron would eventually need to be removed, just as it is with the transfusions. When I consider it that way, there is really no escape.

There are currently two medications used to control iron overload. The first has been around for many years. It is an infusion, which means a needle is inserted into the child and carries medication to remove the excessive iron. The infusion is often 10 hours, 5-6 days a week. Mia uses this medication, and has a "pump" which delivers the medication. She wears the pump while sleeping. Miraculously, the pump does not interrupt her sleep. The second medication is an oral medication. It is taken by the patient once or twice a day. I am told it tastes horrible, like chalk. It is this medication which carries a black box warning. The warning, because, a very small number of patients taking it have developed very serious kidney issues or gastrointestinal issues. As in life-threatening issues.

The decision about which medication to give Hannah Joy was not an easy one. Just like the decision about her treatment plan. Hannah has been traumatized by frequent needle sticks. It began for her as a baby, during times where she entered hospitals without a mother to hold her tight. It continues now as I try to reassure her as her nurses need to stick her for the 3rd or 4th time to get a vein. The thought of me, as her mother, delivering a daily needle to her abdomen or thighs is too much. She is too young to understand, and there are consequences to childhood trauma. Consequences I wish to avoid as she works to become more secure emotionally. And so, the only option left is the medication with the black box warning. Some days, while I crush it up, I ask a quick prayer of protection for her little body. Other days, I live in denial about what I am actually doing.

Hannah easily takes her medication, twice a day. She chooses whether to have it crushed in pudding or applesauce. She likes to have me feed it to her. She endures the chalky taste. And she skips off to the next task of her day.

As a mother, I wish I could take this from her. I wish there were other medication choices to remove iron overload. I wish that neither of my children had to endure what they endure on a daily basis. Yet, the reality is that this is their journey. I cannot spare them from it, no matter how desperately I wish I could.