My son Caeleb has struggled with an inhibitor since he was 11 months old. Despite many doctors’ recommendations, it’s never been as “simple” as waiting to get below a 10 Bethesda Unit measurement to start immune tolerance therapy (ITT). He developed a rare allergy to Factor VIII and there is no known treatment or protocol for this kind of allergy. Treating bleed after bleed, enduring hospitalization after hospitalization, being wheelchair bound for a chair, and exploring second opinions at different Hemophilia Treatment Centers (HTC) all took a toll on us as a family.
However, it was worth it.
During our time at the Denver HTC, the hematologist suggested we see an allergist at National Jewish Health, a leading hospital in respiratory and allergy treatment. That suggestion changed the course of life for both my son and our family. The allergist suggested trying a new injectable allergy drug every two weeks. After a slow escalation of Factor VIII being introduced to my son, he is now able to have 4,000 units of daily Factor VIII with no allergic reactions, meaning we had finally began ITT. Over the course of many months, his inhibitor decreased to zero.
Did I tell you that his inhibitor is now zero?!
When the treatment center called me to tell me the news I was literally speechless! I realize as an inhibitor mom that the numbers fluctuate and that inhibitors often come back in full force, but I refused to worry about what may happen. I chose to celebrate!
But something happened in that moment of celebration.
That night we had pizza and cupcakes and I contacted everyone I knew on social media and by telephone, but my heart still hurt.
My heart was hurting for the inhibitor community that has been a lifeline for me over these years. I was almost hesitant to share the wonderful news that Caeleb’s inhibitor was registering zero. I now had what so many in our community want — to “just” have hemophilia — to just treat a bleed with the needed factor, use some RICE and within a few days to be back on their feet, instead of weeks and months of healing. I started to doubt whether or not I should have celebrated with my inhibitor friends, but you know what happened?
They celebrated with me.
My community celebrated because they understood all too well the journey we had been traveling. Holidays and birthdays in the hospital, family events missed due to hospitalizations, days and days of school missed, walkers and wheelchairs, and not being able to run and play like most little boys.
We may be at zero Bethesda Units right now, but having had two sons with inhibitors I know very well that this segment of the bleeding disorder community is part of who I am and always will be. I am indebted to the moms who answered my Facebook posts in the wee hours when I was in the hospital going more than a little crazy and was at my wits end. There were nights that those posts gave me hope.
A bleeding disorder is serious business. You don’t need to have an inhibitor to know the truth of that statement. Never compare and think that someone has it worse and say “I shouldn’t complain.” Yes, there is always someone in a worse situation, but each of us has a journey with our children that is real and difficult in its own way. Always understand that the road you are traveling is your reality. When it’s bad it’s bad, but when it’s better, be sure to celebrate.
Cazandra lives with her husband, Joe, and 18 year old son, Julian, and 7 year old son, Caeleb, in New Mexico.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers