For many months I have agonized over the decision to allow my daughter to try a controversial drug to help her manage the pain in her KT leg.
We were told that it would take time to see results. Typically, most patients feel relief 4-6 weeks after starting the medication. We were told that this is not a miracle drug. They weren’t even sure if she was receiving the correct dosage; or if the medication would even be effective at all.
We were very skeptical about this new and expensive (as it is not covered by insurance) journey, but we felt we needed to try. We have (unsuccessfully) tried everything else to manage her pain. We have tried other interventions, medications, surgical procedures, reiki, physical therapy, etc. All to no avail. I often wonder if some of these other interventions caused more harm than good. In some instances I rejected certain proposed interventions, such as low dose chemotherapy.
Currently are just under 2 weeks into taking the new medication. Words cannot express how I feel about how this drug is changing my daughter’s life, for the better.
FEAR – fear is the first emotion I am experiencing. I know, weird, right?
Let me explain. I am fearful that the medication will stop working. I am fearful that she is enjoying her new-found freedom just a little too much and may be pushing herself too hard to have fun. I am scared she may crash and burn.
But, OH MY JOY! <– look! A good emotion!
HAPPINESS for her, my heart and my ears:
- “WOW! Mom, I was actually running today. With my friends! It felt so good to not have to walk, or have my friends wait for me to catch up to them. “
- “Now I can have FUN!”
- I asked her why was she limping “Because my whole body hurts from running yesterday. It’s not just my usual leg pain this time. But its okay, it feels so good because I am using muscles I haven’t been able to use in a long time.”
- “I mean, my leg hurts a little, but Mom, just a little. If I tried to do all this running around last month, I would be dying of pain. But look, yes, I mean, it is swollen, but it doesn’t hurt as much as it usually does.”
- “I can’t believe I did all this running and the pain isn’t that bad. I mean, most days I wake up with this kind of pain and my day just gets worse. But now I know what it is supposed to feel like to wake up with no pain.”
- “I can feel how out of shape I have become because everything hurts, but now my body is working again!”
- “It’s miracle that I can do these things again!
Anyone living with Klippel-Trenaunay Syndrome, or with any form of chronic pain can attest that on most days, a few hours of fun usually results in days of pain and eventual recovery. It seems that there is always a heavy (painful) price to pay whenever she seems to have fun. My child has been experiencing that horribleness. But this new medication seems to be turning the tide for her and offering new hope.
I am trying to let go of the fear of the other shoe falling.
I need to embrace this moment in her life. Her moment of pain-free joy. I love the smile on her face. I love watching her flex her new-found muscles, and freedom. I love my happy (and for the moment, pain-free) girl.
I pray that this wonder drug will continue to help improve the quality of her life.