The importance of meeting halfway in hemophilia care

I have a friend from middle school who has a special place in my heart. We call each other “friends of a lifetime.” Years can pass without us speaking to each other, but we pick up as if no time has passed at all. I am part of her family and will drop everything if she needs me, and she does the same for me.

My experiences with her family were unlike anything on my family’s agenda. We spent days at the lake, rode minibikes, and fished. Even when the fish weren’t biting, we found ourselves in fits of laughter that brought tears to our eyes and made our sides ache.

Fishing meant using stink bait and hooking worms. Her dad even had me clean a fish to get the “full experience.” In his Southern drawl, he said, “Ku-sahn-dra, one fish. Just one.” And he smiled and chuckled as this city girl did the cleaning step by step. Even though I don’t eat fish, those moments still make me laugh.

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When my friend and I spent time at each other’s houses, and it was time to go home, we walked each other halfway (she lived just around the corner). There was a crack in the asphalt at our halfway point, and when we reached it, we said goodbye and called each other that same night.

The halfway point was more than just a physical marker. It symbolized our camaraderie and respect for each other. It’s a lesson that transcends childhood, reminding me of the value of meeting halfway in life.

Collaborating in life with hemophilia

Raising two sons with severe hemophilia and inhibitors has been a difficult journey. My youngest son, Caeleb, has experienced more than his fair share of challenges. The constant fear of a sudden bleed, the financial strain of expensive treatments, and the emotional toll of seeing him in pain have been overwhelming at times.

During Caeleb’s elementary school years, hemophilia became the center of our world. My entire family felt like we were being held hostage by his bleeding disorder. At 11 months old, Caeleb was diagnosed with an inhibitor, one of the most severe complications for a person with hemophilia. He also developed a rare allergy to factor VIII, which made treatment even more difficult.

The doctors at our hemophilia treatment center (HTC) were stumped as to how to help Caeleb. Without similar cases in the bleeding disorders community, they lacked ideas and direction. I felt helpless, watching my son endure joint bleeds that lasted for weeks.

My husband and I took Caeleb to an HTC in a different state for a second opinion. They didn’t have a patient with the same myriad of complications, either.

While we were glad to have two sets of professionals helping my son, a problem arose: The HTCs were not communicating with each other as I had hoped. This led to misunderstandings, conflicting treatment plans, and, ultimately, a delay in Caeleb’s recovery.

During one hospital stay, the treatment orders were different from what I expected. When I asked questions, I learned the doctors had not met each other halfway to collaborate.

Advocating for Caeleb was a relentless battle. Getting two sets of doctors to work together was like herding cats, but I had a responsibility to my son.

As an outspoken, sometimes rabid, advocate, I used my voice to speak up for Caeleb. Even though some of the doctors may have wanted to come up with an answer on their own, insisting that they collaborate was critical. Eventually, a third opinion from a specialist proved to be life-changing.

I don’t know why, but I, too, often feel like I must complete a task or solve a problem on my own. Knowing there are resources available is comforting, but stubbornness is my worst enemy.

Reflecting on my “friend of a lifetime,” our relationship has taught me valuable life lessons. Doing uncomfortable things like gutting a fish changes my perspective and offers a deeper appreciation for life. Taking risks, such as riding minibikes at full speed, can bring joy. And meeting halfway can be enriching, as it allowed me to experience life with someone completely different from me.

Thank you, my dear friend, for always meeting me halfway.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.