The Buys Family

It was only about two weeks that we started watching a rapid decline in Brennan’s health. Brennan is our 16-year-old son who loves boxing and hanging with his friends. Initially we weren’t worried when he came home and told us he wasn’t able to exercise in gym and ROTC because he was getting so out of breath. He just had gotten labs one month prior to the start of the school year and nothing had been off, so we thought he was just tired, maybe anemic. I started thinking about maybe going back to the doctor with Brennan because he was looking a little jaundiced and really getting paler over a couple of days. I started him on iron tablets thinking this would help, but within one week of complaining of feeling weak, and short of breath he started sleeping all the time. I mean ALL the time. From the minute he got home from school, all the way through to the next morning. Finally, after a week and a half of this, I got home from work one afternoon and had a hard time waking him up. I said, “that’s it, we are going to the hospital”. I’m so glad we did, when we arrived, even the nurse was shocked at how pale he was. They moved quickly, even the ER doctor was concerned.

When preliminary results came back his hemoglobin was down to 4. Labs indicated a serious problem and the doc asked me to step outside. I knew what was coming. I had been playing Doctor Google and the news they delivered about leukemia was not surprising. I was oddly prepared for bad news but was always hoping for the simplest explanation, like “oh he needs a shot of B12 for pernicious anemia” or something easily treatable. Brennan was transported to Johns Hopkins All Childrens Hospital in St. Petersburg, Florida. From there, we were taken in and the whole process moved like lighting. They had in him for a bone marrow biopsy, lumbar puncture with IT chemo, and on chemotherapy that very next day on September 29th.

I couldn’t believe the different teams coming and going and preparing us for this long and tough journey. Initially, it’s surreal and we are all trying to absorb the information coming in. We very quickly got our in-patient routine down, changing to a new normal for our family. That first month of treatment at the hospital went surprisingly well and our spirits were continuing to maintain positive vibes and hope, along with a lot of prayer. Family, friends, neighbors, and colleagues showed overwhelming support that it was impossible not to cry and feel so humbled by everyone’s kindness. We found out Brennan is high risk and also carries a mutation that makes his cancer cells quite stubborn to treatment and prone to relapse.

The second phase of treatment started out rocky with declining health and strength, it was a challenging phase with a lot of discomfort for Brennan. The team had to work hard figuring out how to mitigate his side effects. We finally got there and that was a blessing to see our son tolerate treatment without being in misery later. The neuropathy has been very hard on him and he has a lot of muscle deconditioning. We found out his cancer was still not gone and had to abandon the regular schedule of treatment for alternative strategies. This hit us all especially hard because hope loses steam as each stage doesn’t lead to remission.

Little brother, Finian, who is only 8 years old, was so ready to have our family back together full-time, and be free to do more together. It affected everyone but we felt okay about whatever the next steps were. This included moving to bone marrow transplant and little bro was a complete match, which was a relief but also a worry. As a mom, I was worried now about what that meant for both of our kids. In the mean-time we were approached about a clinical trial using Brennan’s own T-cells to target his B-cells. It was scary but he wanted to do the study. We weren’t sure what side effects Brennan would experience. He underwent the treatment and currently at 1 month out, he was in remission. It was uplifting news but now the waiting and yearlong testing will have us all on pins and needles. He has to get a year out with bone marrow biopsies every 3 months, labs, and IgG replacement therapy, possibly for life, and then at one year if it’s still working, they consider it curative. That would be a blessing. Time will tell but he’s tolerating it pretty well and we all hope and have faith that this will lead to long term remission and a life free of cancer. The cancer support community to continues to bless us with support along our journey and that’s been a strong rock in the storm.

Thank you again. -Leslie, Dimitri, Brennan, & Finian