Looking back from the time Mac received his oncology referral to the time of his LCH diagnosis, time seems to have passed so quickly. However, in the heat of the moment as we were living those long days and endless nights, time ceased to exist. The days and nights had no clear definition and they ran one into the other accompanied by a feeling of not being able to breathe. “This isn’t real. This isn’t happening. I cannot hear any more. Doctors, please stop talking.” To get to this point in our journey, we must first look back:
Since Mac was two-months old, we knew “something” was different. On April 22, 2013, we had our first consult with Dr. Whelan, Children’s UAB. We had no idea that it was this appointment that would redirect the course of our personal and professional plans individually and as a family. That Monday, Mac had to fast which undoubtedly made us very popular in the waiting room. There were many tears (mine were internal) but other than that, the meeting went very smoothly. The staff was exceptionally nice and we left convinced that our child did not have cancer or a cancer-like disease, that it was merely an infection of some sort. Dr. Whelan scheduled Mac’s biopsy with Dr. Elizabeth Beierle for the following Monday, April, 29, 2013. We took Dr. Beierle’s name as a “sign” of good things. Our daughter’s middle name is Elisabeth and she pronounces her first name “By-Ler,” which sounds very similar. Yep, we were looking for only the positive. We were advised that if Mac had any change of behavior (refusal to eat, vomiting, fever, etc.) to contact the oncology nurse immediately. “Okay,” we thought, “see ya on Monday.”
Little did we know we would find ourselves calling the oncology nurse first thing on Sunday morning due to Mac vomiting and she would instruct us to drive immediately up to UAB Children’s ER. Even at this moment, we were still somewhat in our little cloud of denial. The ER doctor ran a myriad of blood tests and told us he would return in an hour or so. So, we pass the time. How? I do not know. It is lost among the multitude of rooms we would be shuffled in and out of for the next 7 days. The doctor returns to say Mac’s WBC (white blood count) is “indicative of leukemia of other cancers, but you’ve heard that already.” Ricky and I look at each other. Stunned. Speechless (which those of you who know me best know the is not an easily obtainable feat). “No, actually. We have not heard “cancer.” His blood counts have always been normal.” Then…the back-peddaling began: “It could be an infection. Strep, Mono. Maybe even cat-scratch fever.” We rolled our eyes thinking, “No. No. and no,” because these are all things we had been hearing for months and months. The ER doctor knew he had misspoke and just sent our minds reeling to the infinity no parent wants to be in much less find themselves living. We were reaching the top of the roller-coaster…
We were admitted to the pediatric ward with Mac’s white blood counts being at 29,000 (normal counts for an infant range between 3-10,000. Adults: 5-10,000). Granted, when viewing cancers you will see numbers in the hundreds of thousands so even though Mac’s numbers were high, there were still somewhat low in comparison. Yes, even at this point, we are still in denial. Are you seeing a pattern?
Once we get settled into our room, we are later introduced to Dr. Kevin Cassady, M.D. Infectious Disease. He asked a lot of questions regarding where we moved from, where we had traveled, our household environment and so on. We first thought his line of questioning was focused on my husband since he had been to Qatar, Spain, and other foreign countries within the last two years. We are still clinging to the hope of an infection…afterall, why would the infectious disease guy be talking to us if it were cancer?! We are hanging on by a nail. Literally, still clinging and still denying.