Saturday, July 30, 2011


I place a lot of trust in C's doctors. Because even after all my research, I'll still never know all that they do. So I have to trust that the decisions they make are with my daughter's best interest in mind.

This is difficult sometimes.

Yesterday, C had another checkup with her pediatric dermatologist to track the progress of her hemangioma. As I had noticed, not much has changed lately. The propranalol seems to have stopped shrinking the hemangioma, but is at least stopping it from growing larger. So we discussed options. Options are scary when coming from a specialist in a children's hospital.

The first option is a topical cream to be used in addition to the propranalol. Clobetasol is a highly concentrated steroid cream that should ideally lessen the redness and reduce the protrusion. Dr. Theos prescribed a thin application at bed time each night, covered with a bandage. Possible side effects include itching, burning, swelling and redness (which seems a little ironic), thinning of the skin, and, if it comes into contact with the eye, glaucoma! Needless to say, Husband and I were a little apprehensive. We started it tonight and I find myself staring at C as if I can predict a side effect.

The second option is one I have been fearing since I began my hemangioma research. Laser treatment. As I continue to read more about it, I realize it is usually performed as an outpatient procedure and often results in the complete removal of the hemangioma, but I still do not completely understand the procedure. What I do know is that our insurance company has to deem the laser treatment necessary and not simply cosmetic in order to cover the cost. So, Dr. Theos took a picture of C's hemangioma and sent it to our insurance company, arguing that, if left untreated, her hemangioma could encroach on her left eye, thus impairing her vision. 

We are waiting to hear back from them and I find myself unsure of the answer for which I am hoping. Researching something as vast as a hemagioma is disheartening. While many are completely gone after treatment, there are just as many that leave scars and skin deformities The photos of these children is more than I can take. C's is relatively small and will most likely vanish without a trace after treatments and time, but the alternative is so scary sometimes.

Every mother wants the best for their child. You want them to be healthy and happy. To know that they are special, important, kind, smart. You want them to learn to embrace their differences and celebrate their strengths, but you hope they won't have to learn these lessons by personal experience, especially at such a young age. I worry that if it isn't gone by the time she starts preschool, kids will ask her what happened. They will point and stare and it will be at this moment that she realizes she is different. It will be in this moment that she suddenly feels different. And I worry that my words won't be enough to fix it.

The anxiety I feel in public is palpable. C is reaching an age where she won't wear her "signature headband" without tugging and pulling at it, exposing the deep red bump on her forehead. I cringe as the same person that oohed and aahed over C just minutes before, darts their eyes to the ground, embarrassed to have seen it. I tire of explaining it to complete strangers.

And while I hate, hate, HATE that my beautiful, happy child has to go through this, I hate even more that it bothers me so much. I hate that I care what other people say. I hate that I am constantly watching, constantly on headband patrol. I hate that while my child is happy and otherwise healthy, my focus is on this bump at least three times a day, with each dose of medicine. 

But still, among all of the hate, is gratitude. I am grateful that she only has one lesion and not ten. I am grateful that we have this superior level of healthcare available to us. I am grateful for new research and new treatment options. I am grateful that my sweet sweet girl has no idea what it is and probably won't for well over a year. I am grateful that my child is happy and healthy. And I am grateful to have family and friends who will listen to me when I need to vent, when I need to be angry and who love my child beyond measure.

I have so much for which to be grateful and I put my trust in C's doctors. I trust that everything will be okay. I trust because I can do nothing else. 

1 comment:

  1. Oh, Hillary. I will pray that the right decision will be directly pointed out and that you will have peace in it. Give that sweet precious beautiful baby girl a squeeze for me!!