Luke’s Story {Childhood Cancer Awareness Month}

In the spring of 2013, I was living the life I’d always dreamed. I was married to my best friend and got to spend my days at home with my two spunky little boys. Luke was 3 years old and Jake had just turned 18 months.  Having grown up in a house of all girls, I was enjoying learning all about the world of little boys, especially about how they NEVER STOP MOVING!  I loved it. But in early March, there was a change in Luke.  He seemed unusually tired all the time, even without exerting much energy. What really caught my attention was one afternoon we went to the park, and instead of racing to the top of the climbing structure, as was his norm, Luke laid down on a bench and said, “I think I’ll take a little rest, Mom.”  Whoa. Something was not right. When we got home I called his pediatrician and made an appointment for 2 days from then, saying I was concerned he might be anemic and was hoping she’d do some bloodwork to see if we needed to add a supplement or something.

At the doctor’s office Friday afternoon, the pediatrician looked him over and agreed he looked pale, but didn’t find any other obvious signs of illness. She ordered a CBC and sent us to Texas Children’s Hospital’s West Campus to have it drawn, as her lab tech had left for the afternoon. When we walked in the door at home, upon returning from the hospital, the phone rang. It was the pediatrician. She told me Luke’s CBC showed all of his counts were unusually low. She read me his hemoglobin level and then stated what the normal range was; his was off the charts low. Then she read the white blood count and the normal range; again, off the charts low. She repeated this for several levels as my mind swirled with what this could mean. Does he need multiple supplements? I wondered.  How’d his nutrition get so bad; he’s a pretty good eater?

“These results suggest Luke has leukemia,” she said. “I need you to head downtown to Texas Children’s Hospital for further testing. Pack a bag for a few days.” I’m sorry, say WHAT?!?! The world seemed to completely fall off its axis as she rattled off directions to the hospital and instructions for what to do when we got there. I numbly hung up the phone and went searching for my husband. The next 30 minutes were like the scene from a bad dream as we packed a bag, got my parents to our house to stay with Jake, and loaded Luke in the car. We had NO IDEA what we were facing. Certainly, she was mistaken. “Your child has cancer.” How in the world does a momma even process those words? This was something OTHER people hear. A malady that occurs to unknown families in far off places, right?!

We arrived at Texas Children’s and were taken immediately back through the ER. Within minutes there were 8 white coats surrounding us, asking questions and poking and prodding my baby. What that child endured over the course of the next 48 hours is unspeakable. He practically had no blood, as his bone marrow had essentially stopped producing it, so getting an IV in and blood drawn was unbelievably difficult. I cannot adequately describe the horror that is holding down your screaming 3 year old so that yet another nurse can try to successfully enter a blood vessel with a needle. I am still haunted by the look on his face as he searched mine, wondering why in the world I was allowing these people to do this to him. Hands down, the most awful experience of my life was to subject my son to the “torture” that would save his life.

After a few hours we were told the preliminary tests confirmed our pediatrician’s suspicion… Luke had Acute Lymphoblastic Leukemia {ALL}. He would need further testing to determine exactly what kind and how to treat it, so we were admitted. Two days later all the official results were in and treatment began immediately. He began chemo on Monday, and his lead oncologist set up a meeting with my husband and me to outline his treatment schedule. She told us ALL is the most common form of childhood cancer and his was the most treatable kind. Finally, good news!  Treatment would last approximately 3 years. THREE YEARS?? She explained that leukemia was a bit sneaky and could lie dormant in the body for quite some time, therefore they had to continue treatment for 3 years to make sure they got it all.

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Our world as we knew it changed dramatically. She explained that the chemotherapy would suppress Luke’s immune system, and we would need to keep him isolated for at least 6 months. No preschool, no church, no Chick-fil-A…places with large crowds and germy kids of any kind were off limits. While we were still in the hospital, my family had our home cleaned top to bottom, and I withdrew Luke and myself from every activity we were involved in. We returned home 5 days later with an arsenal of medicine and hand sanitizer. The kitchen became our home pharmacy with baskets lining the counter with chemo and all the medicines required to counteract the negative effects. The refrigerator was wall papered with spreadsheets of time tables for medicines with places to check off once they had been administered. The master bedroom was reconfigured to allow Luke’s mattress be brought in so he could sleep in the room with us. He would not leave my side, and, quite frankly, I wouldn’t take my eyes off of him. Sadly, his mattress became where my husband slept, and Luke slept tucked in next to me so I could rub his back and whisper reassurances to him as he moaned in pain.

About 3 weeks later we learned this was not normal. Most children at this stage of treatment led relatively normal lives, albeit in isolation. Luke wouldn’t get out of bed, nor was he very interested in eating. Apparently, Luke was really, really, sick. We were readmitted to investigate why Luke felt as poorly as he did. As it turns out, both his cancer and his body were super sensitive to the chemo. Within 28 days of diagnosis, they found no detectable leukemia cells, but his body was struggling to maintain normal bodily functions as a result of the chemo. He was in unbearable stomach pain, which could have been from the pancreatitis he developed, or the enlarged, damaged liver that was fighting so hard to process the toxic chemo. His sodium levels were also out of whack, as well as other complications I cannot even remember well enough to explain at this point. We spent all of April inpatient in the hospital, and by May Luke was granted a short chemo hiatus to try and give his body a chance to recover from the damaging effects. In the interim, he had lost the ability to walk without a walker and could not move his eyes left and right. He was like a little bug with giant protruding eyes, and he had to move his head side to side to look around the room. Most traumatic for me as his momma, however, was the loss of hope he seemed to have. Who knows what in the world was going on in that precious head of his. Who can explain cancer to a 3 year old?!  I really believe he didn’t think he was going to get any better and just gave up. He was so depressed he wouldn’t even talk, which made understanding what he was feeling all the more difficult.

Thankfully, May brought improvement! He began to eat again, and his pancreas and liver seemed to be healing. We were home once again, with only weekly visits to the cancer center. He also began physical therapy and learned to walk again. Eventually, his lateral eye movement returned as well. In June we began the second phase of treatment, which included 6 inpatient chemo treatments, roughly 3 weeks apart. Each hospital stay was 2-3 days, where he would receive high dose chemotherapy and then his body would be flushed with fluids to wash it out before it did more damage than good. By the fall, we fell into a new “normal” routine. We learned how to entertain ourselves at home and became very proficient at managing the daily and weekly medications.

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At this point we were also able to transfer his treatments to the West Campus of TCH, only 15 minutes from our home, which was so much better than the 45 minute {without traffic!} hike from our home to the hospital downtown. Because of the port in Luke’s chest, a central line to deliver chemo without getting a new IV each time, any fever Luke gets has to be evaluated at the hospital. So we’ve had more ER visits than I can count and multiple inpatient stays when Luke caught an infection his body had a hard time fighting off. In December 2013 he developed a horrific case of hand, foot, and mouth disease, and in January of 2014 he developed RSV which landed us inpatient for at least a week. But thankfully, he recovered nicely every time. We are now closing in on the FINAL days of treatment. Because of the genetics of Luke’s leukemia, he was labeled “low risk” and the treatment was shortened to 2.5 years.  Calculating for time we took off in May of 2013, Luke will officially end his treatment on October 26, 2015!! We are planning the party now…LUKE WINS!!!

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I’ve learned so very much through our journey. I’ve learned that a momma’s love is the strongest force on this earth. and because of it, you can do things you never thought you could do. I’ve learned that God can handle any range of emotion I spew at him, be it grief, rage, or hopelessness, and He will only respond with gentleness and love. I’ve learned that friends will make amazing sacrifices if it means bringing a smile into your day.

I’ve also learned that childhood cancer research is grossly underfunded. Childhood cancers receive a measly 4% of the National Cancer Institute’s yearly budget. In the past 20 years, only 3 drugs have been developed for pediatric cancers.  Our kids need better cures! Thankfully, my son has been cured, but he will live with some of the side effects of his treatments for the rest of his life. We need to support research that will both increase the survival rate for pediatric cancers and increase the quality of treatments available.

I am now on a mission to increase awareness of, and funding for, pediatric cancers. Texas Children’s Hospital has set up a web page for me to collect donations for research in the cancer center there. 100% of the donations collected on this page will go directly to their work in research in the cancer center, with no administrative costs taken out. If you’d like to make a difference in the lives of children fighting cancer, you may make a donation here.

September is Childhood Cancer Awareness month. Will you spread the word? Go Gold for our kids! Talk about how we need more funding for kids’ cancers. Make a donation to a pediatric cancer organization of your choice. Wear gold to honor our heros! And, most importantly, slow down and enjoy your babies. Hug them tight and thank God for the opportunity to raise them.

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Jill_headshot_HMBAbout Jill

Jill has been married to Aaron for almost 9 years and is the mother of 2 boys, Luke and Jake. She is a former math teacher turned stay-at-home mom who is passionate about spreading awareness of, and fundraising for, childhood cancer.  In her free time she enjoys exploring her creative side through machine embroidery.

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One Response to Luke’s Story {Childhood Cancer Awareness Month}

  1. Avatar
    Bethany September 25, 2015 at 2:24 pm #

    Great post, Jill! Thank you for being bold and spreading awareness. We love y’all and your story! So excited to celebrate Luke!

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