In early September of 2020, my son started to complain of back pain. I took him to the pediatrician, where he was assessed and a multiview x-ray was ordered. It was normal. I agreed to keep a log of his back pain complaints.
A couple of days later, I received a video call from my son at his dad’s house and he was crying. I couldn’t see him. He had used Siri to call me because he couldn’t walk to the phone. I hung up, picked him up from his father and called the pediatrician who said his x-ray looked normal, let’s give it some time. So, I hung up and called Nemours Orthopedic. A PA saw him, looked at his x-ray, saw it was normal but wasn’t thrilled about his reluctance to bend over or rise from "criss cross applesauce," and asked us to get a CBC before we moved to MRI.The CBC results were abnormal, she said, but not too concerning. But, she seemed concerned and insisted we repeat the labs. And in my heart, I already knew. I cried that night. Hard. Like ugly cry. Like Michael Jordan. I agreed to repeat his labs in one week’s time.
I did not get one wink of sleep in the days after. I texted the pediatrician his CBC results. I was told it was nothing too abnormal, and that we see this in kids with viruses all the time. Let’s repeat this in 3-4 weeks. I cancelled the appointment with Ortho. Still, it bothered me. So, I did what any other person in 2020 would do and messaged pediatric hematologists on Twitter, the famous ones with the blue check marks...and they said the same thing-- just a virus. That next day, I got him a COVID test...negative. I spoke to a second pediatrician, who said the same thing and to my colleagues in the ICU who expressed the same thing. I felt like I was going crazy but my mother’s heart would not listen. Four days later, my son cried in pain as he sat down at the dinner table and I decided it was enough. I went to the ER and asked them to do it all. He was pan cultured, urinalysis, labs, chemistries, ultrasounds. Every last thing was normal except slight anemia and a low WBC. We were transferred that night via ambulance to the hematology/oncology floor at Wolfson Children's Hospital for more testing. After a normal MRI, and a negative peripheral blood smear for leukemia cells, even the hematologists were confused.
Loxley was then scheduled for his first procedure under anesthesia: a bone marrow aspiration. Two days later, the results were in: Loxley had B-cell acute lymphocytic leukemia (B-cell ALL). The days following that diagnosis were a mad rush of lumbar puncture, port insertion, IV infusions, and chemotherapy. I vehemently asked my family and coworkers to keep it under wraps because it was so overwhelming. After 7 days in the hospital and by the grace of God, we were released home.
Loxley then walked a very long road. For two years, he underwent lumbar punctures, port access, general anesthesia, x-rays, oral, intravenous and intrathecal (spinal) chemo, two bone marrow aspirations, and an echocardiogram. There was always light at the end of the tunnel, though it was always needlepoint from my point of view. It was like an oasis in the desert and if it killed me, I was going to get him there. Today, two years later, Loxley is doing well, and feeling great exactly one week after ringing his "end of treatment" bell. We have put the medical supplies away, wished his treatment teams well, and now walk into a new chapter of his diagnosis: monitoring. We are relieved it's over, but afraid of what is to come. Most of all, we (as his family) are thankful for every day that we have with Loxley.
Loxley’s presentation was so unique. There was no fatigue, no fever, no infection, no bruising, no enlarged lymph nodes or spleen, no petechiae, no high WBC, no long bone pain. The only reason we landed at his diagnosis that day, and not months later was because I am his mother. It had nothing to do with being a nurse, nothing to do with anyone’s medical training and everything to do with “he’s my baby. I know my baby.”
We heard about LLS through our Child Life Specialist at Nemours Children's Clinic in Jacksonville, Florida when they reached out to ask if we would like to participate as an Honored Hero family for the North Florida region.
At diagnosis, we were presented with trials that Loxley could participate in...the one that his particular leukemia would respond best to, after further research, we found was an LLS funded trial.
Light The Night was an experience that can only be described as awe inspiring! The sense of belonging and kinship is unmatched! The sea of faces that were there to support, celebrate, and remember was a sight that we will never forget. Loxley felt extremely empowered and honored that evening. It really meant the world to him to be a part of an event like that. It was a tremendous show of support!!
Listen to your gut, mom and dad. Trust that tiny voice inside of you that is pushing you to stand up for your child. Know that although you didn't choose this path, this was always the path that was going to come before you because you ARE strong enough to walk it.
Our son is stronger and can endure more than we could ever imagine. He is an incredible example for even the wisest adults, and we are made of some impressive stuff, ourselves. We've also learned that while we certainly could do it alone, we wouldn't ever have to -- community support is so very important to the success of not only treatment, but the emotional and mental well being of our son!
The best advice we were given was to take things hour-by-hour, not even day by day. It helped us to focus on the smallest wins, and the tiniest goals. Celebrating several times a day, for many days, is what helped us keep going!
Loxley
B-cell acute lymphoblastic leukemia (ALL)
