It's the question I get asked most often.....How did you know Emmy had Leukemia? It's one I am passionate about answering because I believe it is one of the first and most important steps in bringing awareness to the epidemic and the ever increasing rise of Childhood Cancer.
So, let's set the back drop a bit. The girls were born at 33 Weeks -- they were preemies. We brought them all home on Apnea and Bradycardia monitors. They continuously got ear infections and after months of fighting infection, they finally got ear tubes. However, the infections continued and we soon began looking into allergy testing. Many of the unanswered questions we had, sickness after sickness, were answered with the canned response, "They're preemies and more prone to sickness." But we still felt like something was off. I finally got smart and decided I needed to write down exactly who was sick when and with what (please don't judge that I hadn't done so sooner---we were literally trying to keep all these little humans alive on barley any sleep). Eventually I started to realize Emmy was getting random high fevers with no other symptoms. A pattern that didn't match with our other littles. They would appear, and then subside the next day. Our pediatrician, who is absolutely AMAZING, was unaware of the circumstances because she is in a practice where, if she has a full schedule (happens often if you're AMAZING), they have you see a different provider within the same practice.
After calling her office and being told by the nurses over and over, "Kids get viruses. If the fever is gone in 24-48 hours it's definitely a virus." That, sadly, went on for a good two months. Finally, I was able to talk with our Dr. directly and she agreed something seemed off and insisted on seeing her directly if the fever reappeared.
Fast-forwarding a bit, Emmy woke up screaming of leg pain on an early Friday morning at 5 am. When I went into her room she was walking on her tippy toes screaming. I immediately thought she had a charlie horse or growing pain in her leg. I massaged it, comforted her, and eventually got her back to sleep. That same day, mid-morning, she began crying that her tummy hurt, and she appeared abnormally pale. The fever was back. I was convinced this time around we had somehow picked up a stomach bug and was waiting all weekend for her to throw up so I could confirm my suspicion. By Monday, we were still in the same boat so I called her Dr and insisted on seeing her and her alone. After running some urine samples to make sure she didn't have a UTI that was causing abdominal pain, and then the tests coming back perfect, we decided to run a CBC (complete blood count) because nothing was adding up. At this point I was totally naive as to what we were looking for specifically. I assumed that just checking her white blood cell counts would indicate that we indeed had simply contracted yet another virus. Because, well, kids get viruses all the time right?
Two days later, I sat with a friend at our school group and remember telling her that I was so concerned about Emmy. It was in that moment of confession about my fears that I realized yet another fear, "OH MY GOSH, WHAT IF IT'S CANCER?" Cancer has managed to find it's way into our lives by wrecking havoc on many of our loved ones already, so there was unfortunately precedent. She proceeded to reassure me that there was no way and I was a catastrophic thinker. (those who know me, know that is not far from the truth)
Afterwards, I went home, put the girls down for a nap, and was reading a book with Gray when my phone rang. It was our Pediatrician. She informed me that, "Emmy's blood work came back alarming. All 3 of her cell lines are down and out of range. This is indicative of Leukemia or potentially an incredibly rare virus. I don't want to alarm you but I have already spoken with our Oncologist on this side of town, and they would like you to pack a bag and immediately take her to the ER downtown for further tests." Little did I know, this would be one of many times I felt like my world stopped, and the carpet was ripped out from under me.
After registering (not processing) our pediatrician's words, I walked into my babies bed room in a daze and stared for a brief moment at all three of them sleeping. How could this be? Is all I could think as I stared at her face peacefully sleeping. Tears of infinite emotion were flooding down my face and my hands were shaking. I immediately called Tigh, who at the time was out of town, and could barely get the words out to him as I began throwing random odds and ends into a bag to bring to the hospital. I then called my mom frantically after hanging up with Tigh so she could come watch the other 3 kids and made my way out to the driveway of our house. As she pulled up, I immediately sped off with Emmy to the hospital. Feeling scattered and very underprepared.
After what seemed like an eternity in the ER, IV's were put into place and more tests run throughout the night. Once the tests finally completed, the Dr on call in the ER eventually appeared and said, "Mrs. Holmstrom it's time to call your husband and tell him to come home." I still kept thinking this was a rare virus. God, please tell me this is a rare virus. I obliged their requests, called Tigh, and told him that he needed to cancel all plans and book a red eye home. We were then transferred to the 9th floor of the inpatient hospital building at Texas Children's Hospital. The 9th floor is the oncology floor, but I was too shocked/overwhelmed to even notice where exactly we were. For all we knew, they were simply trying to make us more comfortable after being poked and prodded all night. At 8:30am on November 16, 2016, Tigh walked into the hospital room straight off his flight home and a short Uber ride. He was quickly followed in by a team of Dr's where they asked us to sit down on the bed next to our sleeping daughter and told us....
"Emory has Acute Lymphoblastic Leukemia."
I remember that day so vividly, and I remember not having ANY words of my own. However I was encouraged by the amazing people around me who shared words with me that I continually clung to, mediated on, and confessed. That day in the hospital room and still to this day these truths acted as an anchor for my soul, as I felt our world crashing down around us.
He is the One in whom I find comfort and reassurance: “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33 (NIV)
He is right here with me in the midst of my trouble, I am not alone: “God is our refuge and strength, an ever-present help in trouble.” Psalm 46:1 (NIV)
He is the One who can use my tears to water the soil of my heart so that it can one day be a harvest of joy: “Those who sow with tears will reap with songs of joy.” Psalm 126:5 (NIV)" (Words by: Lysa TerKeurst)
I am no fan of and quite honeslty HATE fear mongering. By NO means is that my intention with this post. My desire and hope is to bring awareness and empowerment. Most moms I have met along this journey have shared that their experience leading up to diagnosis was very similar to ours, or they had a few other symptoms like the ones listed below. Something was off and no answers could be found. If you take anything away from our story, my hope is if YOU or anyone you know has even a remote feeling that something is off with your child's well-being, you ask, no ... DEMAND, that a Complete Blood Count (CBC) be conducted for your child. You are, without question, their absolute best advocate! At the very least such a test will give you peace of mind that whatever complication your child is experiencing, it is NOT life threatening, and at the very most it will lead to early detection which is KEY for not only survivability, but also a life that is cancer free! Know the signs and DON'T be afraid to ask for a CBC!