News

It was a simple question, right?

On October 24, 2017 by Michelle Love

I was notified by Leslie, the Editor at Lake Norman Woman Magazine, that my charity was selected to be included in their Charity Issue this December, 2017. I’ve been a contributing writer for the magazine for just over a year now. I’m very aware of the process of selection for articles in the other months of the year, but not the December issue. I was just blown away to know that Dana, the magazine’s Publisher decided to include my foundation in the charity issue. The writing process usually involves the writer sending the subject a list of questions to answer, that the writer uses to create the article. Leslie is writing the article on my foundation, and sent me the list of questions. I know it sounds like some sort of favoritism, but I can assure you it’s not. I never asked or expected to be included, and was genuinely surprised by the news. After a long week, I sat down last night and intended to answer Leslie’s questions, so that I could focus on the 2 articles that I am writing for this issue. The first question … “Please tell me, in detail, about your charity. (You may also send as much literature about it as you think would be helpful).” Knowing that Leslie will be capped at 500 words, I started out trying to condense the very long, very traumatic, very hopeful and devastating story, so my friend would not be overwhelmed. My answer ended up being 3 pages of single-spaced text. It was like once I started, I couldn’t turn off the faucet and the tears kept flowing while I was attempting to separate my emotions from the story I was telling. That never works. The below is my condensed answer…and it truly is condensed. You cannot tell a 3 1/2 year story of highs and lows, life and death, struggle and fight in 3 pages. Believe me. There is so. much. more.

*****

I created The Stand Firm Warrior Foundation on 9/6/16, exactly 6 months after my 15-year-old son BJ died. He battled Acute Lymphoblastic Leukemia (ALL) from age 11, after starting the 6^thgrade. ALL happens to be the most curable type of childhood leukemia, but that certainly doesn’t mean that it’s an easy treatment, because it’s decidedly not. After tests following BJ’s first month of chemo, it was determined that he was in the highest category for potential relapse.

After a year of fighting through harsh chemotherapy treatments, BJ started regaining strength, was able to start conditioning with his football team, and was able to go back to school in 7^thgrade. He continued his daily oral, monthly intravenous (IV), and intrathecal (injections into the spinal column) chemotherapy treatments, but pushed himself to get back out on the football field. He also played winter and spring basketball that year.

He looked so healthy beginning 8^th grade, and we thought that the worst was behind us. We signed up to run the Keep Pounding 5k in May 2015, and BJ finished the race in 29 minutes. Two weeks after the race, and just a couple of weeks prior to finishing the 8^th grade, BJ had his regular oncology visit where he would have his usual blood tests and receive an intravenous chemo infusion. In the second shock of our life, we were told that the leukemia was back. It’s ironic that while BJ and I were on our way to Charlotte that morning for his appointment, we were discussing how excited we were that he only had 7 more chemo visits left and all of this would be over. However, the war was far from over, and he was admitted that evening to the hospital and began a round of stronger chemotherapy.

Over the summer, he received several different rounds of chemo drugs, but nothing worked. BJ kept losing weight and muscle, but the leukemia remained. We were trying to get to a point of less than 0.1% of leukemia cells in his bone marrow, so that he could have a bone marrow transplant. I was going to be his donor. This was another failed opportunity to save my son. After 5 months of every chemotherapy drug available for this disease, the leukemia was still there.

After somewhat recovering from a fungal infection in his lungs (that almost killed him) in August of 2015, BJ was accepted into a clinical trial at Duke University Medical Center. We packed up and went to Durham for the CAR-T trial, very excited and hopeful that this would be his cure. With the help of my friend Cherie, who is more like my sister, Carly and Cherie lived at the Ronald McDonald House nearby while BJ was inpatient. The side effects from the treatment left BJ in worse physical shape.

On December 9, 2015, after 5 weeks at Duke, BJ was transported by ambulance back to Levine Children’s Hospital in Charlotte. We were greeted by his oncologist with news that no parent ever wants to hear. He determined that there was nothing else to do for my son. The most curable type of childhood leukemia…wasn’t. BJ was visited by a group of former Navy SEALs on December 10, and they awarded him Honorary Navy SEAL by SEAL team 8.

Toward the end of BJ’s 90 consecutive day hospital stay, I felt a strong ‘nudging’ to look into natural treatments. You know you need to follow, when the same thing comes at you from several different and unrelated directions. At the same time, BJ’s oncologist came to us again, and said the leukemia was taking over his organs. There was nothing else to do for him there.

We remained inpatient at LCH until Feb 20, 2016, when he was discharged home with Kid’s Path care. Kid’s Path is a wonderful support system, but it is Hospice for children. Those two words should never go together. After we got home, BJ still needed to go back to the hospital every other day for IV doses of steroids, and blood and platelet transfusions. He was too weak and in too much pain to ride in the car, so every trip was by ambulance.

A few days after we were home, we were able to see an Integrative Physician, who read all of BJ’s medical records, and felt that there was a small chance of helping him. Our hope was renewed, and the feeling of being led by God was strengthened. BJ’s 15^th birthday was on Friday, March 4, 2016. He didn’t want to go to the hospital on his birthday, so we scheduled his appointments that week to accommodate his request. We had planned a big birthday party for him the next day.

On Saturday, it was obvious that he needed blood. The Kid’s Path nurse came, drew blood and later confirmed that his hemoglobin was 6, which is extremely low. BJ didn’t want to miss his party, so we planned to go to the hospital for a blood transfusion at 9am on Sunday morning, March 6^th. He enjoyed his party Saturday, loved hearing all the birthday wishes, watching Dwayne “The Rock” Johnson’s instagram birthday video to BJ, spending time with his close friends, and talking with the group of former Navy SEALs who had taken him in as a brother. Inside Edition was also at his party, filming for a special segment on this special ‘15-year-old Honorary Navy SEAL in Denver, NC named BJ’. He had truly captured hearts across the world through the journey I chronicled on his Facebook page.

When the birthday party was winding down, BJ was ready to be carried back to his bed. My 6’2” 110 lb. son was too weak to walk, and any movement of his legs was visibly painful, but he never complained. He never felt sorry for himself. He never wanted the spotlight. He wanted people to pray for him. He wanted to be a normal healthy kid again. He worried about his mom and his sister, and told us that he didn’t want to leave. BJ completely trusted in God’s plan, regardless of the outcome. He knew that God would bring something good from his life.

We completely trusted that God had BJ. We had all the faith in the world that God would heal him and everyone would see the miracle. But that was not in God’s plan. Around 3:20am Sunday, I heard BJ mutter my name. I could tell that something wasn’t right, and ended up calling 911, because I couldn’t get Kid’s Path on the phone. We woke up Carly, who was 11 at the time. BJ was transported to Levine Children’s Hospital Emergency Department, where his hemoglobin was 3 and his vitals were dropping.

He desperately needed blood, was taken to the Pediatric Intensive Care Unit, and we followed. But things had already started happening that couldn’t be reversed, and we watched as several medical professionals worked on BJ. Nurses were pushing blood into his IV with huge syringes because the IV pump wasn’t fast enough. He fought off the forced oxygen (CPAP). I looked back at Carly who was surrounded with loving arms. Turning back toward BJ, I heard the monitor’s steady tone as they lost his heartbeat. CPR was started, but he was already gone. Words do not come close to describing the devastation and defeat I felt. Words cannot fully describe the sounds of wailing in that room. The physician, with tears in his eyes, looked to me for direction, and I knew what he was suggesting. I shook my head no, and told them to just stop. Crouched down at his right side, weeping, I kissed my baby’s cheek and rubbed his head as his body took it’s last breaths. Carly was standing at her big brother’s left side.

He was gone.

For several months after BJ left, we were desperate to find the good that we were promised. We knew we wanted to help other children not have to go through the hell that BJ did. We felt that the strong urging down the natural treatment path was not in vain. Carly and I struggled with exactly how we would tackle such a huge, complex beast. In a dream one night, someone asked me about the mission of our foundation. Very clearly I told them that we were raising funds to support childhood cancer research focused on finding an alternative treatment to chemotherapy. I woke up, saw it was 2am, and in awe, I repeated what I said in my dream. I said thank you to Jesus, asked him to help me remember that in the morning and I went back to sleep. The next morning, I remembered it all, and wrote it down. After months of contemplating, we had our mission…given to me in a dream, no less.

The name came from Ephesians 6:10-18, the Armor of God verses. I would read that scripture out loud to BJ every morning during the final weeks of his inpatient stay. I could feel the spiritual warfare going on around me. I felt that we needed to arm ourselves spiritually, so that we could continue to have the strength to fight, and to keep our faith and hope alive. And so, The Stand Firm Warrior Foundation was born. We received the confirmation from the Secretary of State on 9/6/16. We were approved as a 501(c)3 non-profit 3 months later. It all went so smoothly, and quickly. I knew God’s hand was directing it all. I continue to defer to Him daily for guidance for my life and for our foundation. He is the source of my strength.