Dear Hemophilia with an inhibitor,
I didn’t know you could be so vicious. You destroyed my son’s ankle and knee. You put him in unimaginable and almost uncontrollable pain. You took away his ability to walk. You even had him at the point where he almost didn’t wake up after a series of medications. You put him in the hospital for weeks and months at a time, and you made him miss more days of school in one year than most miss in a lifetime. You kept us from holidays and birthdays at home and even made us cancel vacations as we were about to walk out the door.
You caused our entire family pain, and we shed many tears. You threw in an extra bonus by making sure the factor replacement he needed didn’t work with an extremely rare allergy. You made us travel out of state for more medical advice and fight for several doctors to work together for the good of my son.
For eight years we were in a constant war with you. And now, the war is over. We won. You aren’t even registering anymore… you are zero! Remember that rare allergy? What you didn’t know was that my husband and I traveled many miles to find a doctor who tried something new. We fought for this treatment, and it worked. It did its job and annihilated you. You are zero.
I know people tell me to be ready because you can come back. But I refuse to live in fear of you. I know who you are and how to fight you.
I know you’re wondering about a few things, so let me get you up to speed. My son’s knee and ankle are damaged but healing. He doesn’t need a wheelchair anymore. The hospital? He hasn’t been admitted in six months. School? He’s there every, single day and loves recess. Oh and by the way, we went to New York on vacation, and he walked everywhere. He hasn’t had a bleed in months. Did you hear that? Months.
You tested my family and inflicted pain on all of us, but you also taught us how to fight. We are warriors. Every single one of us.
And tell your inhibitor friends that when they mess with the family of someone with hemophilia, they will be in for the fight of their life!
If you dare to come back, we’ll be ready to fight again.
Sincerely,
Christian’s family
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Cazandra lives In Belen, New Mexico, with her husband, Joe, and 18 year-old son Caeleb. She also has a 28-year old son, Julian, and both of her sons have Severe hemophilia A. Hemophilia is not the center of their lives; it’s just their “normal.” Cazandra lives with chronic neck and back pain and is also transparent about her journey with clinical depression and anxiety. Her book, Dear Hemophilia: Finding Hope Through Chronic Illness, is now available on Amazon.
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