The Hardest Decision of My Life

When I found out I was becoming a Father for the first time, I spent almost the entire nine months thinking about what life was going to be like for myself and my son-to-be. I spent hours dreaming about feeding him, changing him, watching him take his first steps, and what life would be like for him from elementary school through college.

My dreams weren’t all roses and sunshine though. Out of all of my friends, I was one of the last to have children. I watched and studied as they raised their children and saw not only the good moments but some of the tough ones too. Realistically, I knew hard decisions were a part of being a parent and having children, so I did my best to keep that in mind.

Little did I know that the hardest decision of my life would revolve around making my son healthy today but possibly giving him cancer in the future….

During the first couple of years that Domenic was diagnosed with Crohn’s Disease, we took a conservative approach to his treatments. Given his age, his weight, and a few other factors, we were worried about putting him on biologics. Unfortunately, those few years consisted of us chasing our tails rather than getting a true handle on the disease. Treatments consisted of daily doses of Pentasa along with Prednisone. Prednisone did a wonderful job of masking the symptoms but the minute we started to wean him off of it, the symptoms would start to return and sometimes even worse than they originally were.

One Friday afternoon, Domenic was severely symptomatic. He had already passed close to ten stools that day, the pain he was experiencing was heart wrenching, and when he wasn’t in the bathroom he could only play ten minutes at a time before becoming too tired and lethargic.

I placed a call to his GI doctor hoping that I could get some advice on what we might be able to do before the weekend. The doctor explained to me that we had reached a limit in Domenic’s therapy with steroids and the other medications that were primarily meant for slight to moderate Crohn’s Disease. We now needed to start considering biologics, and his recommendation was to start Remicade. I already didn’t like where this conversation was going, but I knew that I owed it to him and Domenic to hear all of the specific details about Remicade.

He explained that Remicade was used to block tumor necrosis factor alpha ( TNF-a ) which the immune system produces that causes inflammation in Crohn’s patients. He also explained that Remicade was recently approved in pediatric patients and some of his other pediatric patients were showing success in controlling the disease. This all sounded great but there had to be a catch…. And there was one… Cancer!

When I asked about the possible side effects he explained that there were several. Blood disorders, severe infections especially if you already have an infection, and possible liver issues. As bad as all of those are, they weren’t the ones that raised the red flag. It was when he said there was a one in ten thousand chance that an adult could develop Lymphoma and solid tissue cancers. I immediately stopped him and said “One in ten thousand chance in adults?? What are the numbers for pediatrics? What are the chances in someone Domenic’s age getting Lymphoma or another form of cancer?” His reply was even more unsettling. “We don’t have those numbers. We don’t have enough data yet from Pediatrics to know”.

The conversation went silent after that.

He told me to take the weekend to think about it and we would talk again on Monday. All I could think about is that I have to make a decision about whether to put my son on a medication that could possibly make him better today but give him cancer tomorrow. How do you make a decision like that?

That weekend was the longest weekend of my life! I don’t think there was a moment that the question wasn’t in my head. I spent hours on the internet researching Remicade, looking at forums to see what other people thought about it, and talking about it with family and loved ones. I also spent a lot of time praying on it.

When Monday morning arrived, I knew the phone was going to ring at some point and I was no closer to finalizing my decision than I was on Friday afternoon. As I was spending time with Domenic that morning, I found myself just watching him. Watching his expressions, his quality of life, and wondering to myself what he would want me to do.

No child should ever have to suffer! They are sweet, innocent, and incapable of sin. To be made to suffer just feels wrong and unjust. My job as his father isn’t just to protect him but to also give him the best life possible – mentally, physically, emotionally, and spiritually. Domenic deserves better than this… He deserves to be able to enjoy life. To be able to play for longer than ten minutes at a time. To be able to do what other kids his age are doing!

Monday afternoon the doctor called back. My very first question to him was.. “Doc, other than the biologics, have we done everything else we can possibly do? Have we tried everything?” His response was a firm “Yes”. I then felt that the only decision was to put Domenic on Remicade.

Domenic is still on Remicade today, almost two years later. Did I make the right decision? I really have no idea and I’m not sure I ever will know. There’s always that knowledge in the back of my mind that he could develop Lymphoma and it’s something that I believe will probably always haunt me. What I do know is that Remicade hasn’t been without it’s issues, but it has allowed Domenic to be an eight year old boy and for that, I’m extremely grateful!!! This is the first year of his life that he has been in remission. He’s been able to play his favorite sport, soccer, without missing a single game and was able to celebrate every holiday at home, with his family, and not in the hospital.

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  • Laurie Faxon

    Check with ccfa. I think chance is 1/10th of 10000 chance. I did a seminar with them.

    • I will check Laurie :) I did a quick Google search on it and I couldn’t find any data posted about it. That always leaves me feeling a little suspect when they dont want to post exact numbers.

      • Laurie Faxon

        Frank I know that I am correct with this number. If you are on a TNF blocker (humira, cimzia, remicade), along with mexotrexate or 6mp, you have a huge chance of going into remission and staying there. I know it is scary, but the only time you will really hear about this stuff is when someone has a BAD experience. If people are having good experiences, they aren’t sitting around blogging about it, they are out enjoying life. Are you on FB? There are so many good Crohns forums on there and people share their experiences. You can also join a CCFA forum so you can stay on top of the latest and greatest.
        Believe me, I am just a patient, but I try to stay on top of everything. I want a cure!

  • Hollie B

    Sounds like you did good, Dad! It’s scary and I get it. I think about it every time I’m sitting in that oversized leather recliner, hooked up to my “mice juice”. I’ve been getting it for 10 years now and that worries me even more sometimes. But at the same time, it has given me my life back and I have to be thankful for what I have today…otherwise we know what the stress of worrying about it will do! Great post! Thanks for sharing!!

    • Thank you Hollie for the kind words :) I just wish there was a better choice for IBD patients when it comes to being able to achieve remission.