Abby is on Nupogen right now…which is administered by a shot. Nupogen is a medicine meant to help Abby’s bone marrow increase white blood cells. We are quickly learning that the post-transplant medicine regimen is a balancing act. The balancing act is difficult, as each patient reacts differently to different medicines. What works for one patient, does not necessarily work the same way for another patient.
Killing the white blood cells is a part of life for a transplant patient. The white blood cells are purposely killed off so that the body will accept the new heart. Abby is on medicines that are purposely meant to do this. As a result, she is susceptible to catching the diseases and viruses floating around. To help combat this, they prescribe medicines that help fight off bacterial, viral, and fungal infections. One of these is called Valcyte. Apparently, now and then, the Valcyte reacts with the anti-rejection meds and causes critically low white blood cells. Abby is one of those patients. She can not come off the Valcyte until she is off the prednisone (steroids). The steroids help prevent rejection, so they can’t just take her off. Balancing act.
Abby’s white blood cell count is critically low. It is at 200. Cardiologists try to keep transplant patients around 2000-4000. 200 means that Abby can catch ANYTHING and anything she does catch can be extremely dangerous. So, luckily, the Nupogen shots should work. She has already had one set of shots last week. Instead of working like they were supposed to, her WBC fell from 500 to the 200 we are at now. So she was put back on the Nupogen shots, at a much higher dose. We opted for the in-home health company to deliver the shots to us so we didn’t have to drive to the hospital to get her the shots.
So, Justin and I have been giving her the shots. I know that parents sometimes have to give their children shots. Diabetes patients, cancer patients, and others give shots on a daily basis, for a much longer time than I have to. I’m not here to say that these few shots are the end of the world for us. I’m not here to try to make a bigger deal out of this than it is. The needle is small. It just has to be given in a fleshy part of the body. It really isn’t that bad.
What I’m here to say is that NO parent should have to give their child shots. The flinching, the bleeding, the “ouch” muttered under her breath…I hate all of it. I hate KNOWING I am causing her pain. I am usually the one to comfort. I am the one to hold her hand while someone else puts needles in her. My natural instinct is to try to ease her pain, to talk her through the fear and anxiety associated with needles. I can’t do that if I am rubbing her arm with alcohol, counting to three, and sticking a needle in her arm. I hate it! I am so sorry to all you parents that have to do this daily, for a child’s entire growing up years.
I know that shots aren’t the end of the world. I know that often the anxiety over the stick is worse than the stick itself. The bottom line is that I just don’t like being the one to cause any of this.
All that being said, sometimes this road requires us to do things that we hate doing. None of us likes to put our child through pain and fear and anxiety. But I would do it…again and again…if I had to. I do it because I love her. I do it to keep the sacred gift inside her chest beating as well as it has been since she received it. I do what I have to…just like so many mother’s of children with perfect broken hearts. And in doing so, I find a strength within myself. No mom should have to do this…but sometimes, we have to.