Receiving a diagnosis

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December 30, 2016

Calum didn’t seem quite himself for a couple months and, in the weeks leading up to Christmas, he had been sick with a cough and a respiratory virus, which is pretty normal for winter but, in the back of my mind, something very serious was transpiring. He was so pale and had a terrible appetite and generally seemed lack luster about wanting to do anything. It had been less than a month since he’s three-year check up in late November which he sailed through, so I wanted to believe he just had a virus on top of a virus, but his health was plaguing me and I couldn’t shake it. As the weeks went on my suspicions only grew stronger. My mom was coming to visit for the holidays and, two days before Christmas, I was headed to the local train station to collect her. I was bringing the kids to greet her and had to wake Calum from another nap, which was weird since a couple months earlier he had mostly dropped that afternoon nap. When I was finally able to wake him, he was irritated and still exhausted after more than two hours of sleep. It was that moment I became sure he was quite sick. My heart sank and I was riddled with anxiety. I called the doctor and made an appointment to bring him there straight from picking up my mom. On arrival at the train station, I jumped out of the car to hug my mom and began to cry. I was jittery and my mom asked, “Honey, what’s wrong.” I replied frantically, “I don’t know. Something is wrong with Calum”.

We brought him to the doctor and I asked for blood work. I felt at this point I had waited to see if he would improve and, since he hadn’t, I was determined to get to the bottom of this all. The doctor said her exam would be more indicative of a problem, and did not put in an order for blood work. She said she didn’t find anything alarming, so sent us home to monitor him over the weekend. I left feeling unsatisfied, but was at least relieved to have this visit on record. Doctors are very conservative when it comes to making a diagnosis in my opinion. Upon exam, they rarely confirm or rule out anything, which is a frustrating mix of relief and concern all at once.

The weekend went by and we went through the motions of Christmas, unconvinced that he was just suffering from a virus. On Christmas morning he barely had enough energy to glance over his presents, and retreated to cuddle in a chair with my mom. The day after Christmas we were sitting at a family brunch, and I couldn’t even get him to take a bite of cake. He had not improved at all and, by now, I felt nauseous.  I am good at worrying, so I was still hoping my senses were wrong, but I couldn’t sit there another minute without knowing for sure, so I packed him up, and headed back to the doctor. This time I insisted on blood work after they, again, did not find any obvious source of infection.
Two hours later the results were back and his blood counts indicated something was very wrong. Exhausted from the holiday weekend, my husband and I gathered a few items and took him directly to the emergency room at the Maria Fareri children’s hospital in Westchester, NY. Luckily, my mother was still in town and able to stay with our then 13-month-old daughter. After more blood work and a long wait, we were admitted and told that, in the morning, he would get a bone marrow aspirate (a diagnostic test of the bone marrow) to confirm the presence of Leukemia. By four o’clock the next day, we had an official diagnosis of “Pre B-Cell Acute Lymphoblastic Leukemia”(ALL), the most common form of childhood cancer.
I never expected a cancer diagnosis could happen so quickly. Our lives were changing before our eyes, and the fear and sadness of it was crippling. I didn’t want to eat, sleep or move. I just wanted this to go away. I know people who have also suffered real pain or loss understand me when I say it was like an out-of-body experience. Immediately, we had to make enormous decisions having to do with Calum’s treatment, the most important of which was having him transferred to Memorial Sloan Kettering Hospital (MSK) in NYC. We were so lucky to live in close proximity to one of the most prestigious cancer treatment centers in the entire world, and we knew this was where we wanted him to go.
Maria Ferrari hospital was brutally insensitive and made our transfer an enormous hurdle, however, mike and I persisted. On the day we were supposed to be leaving that hospital the doctor came in to tell us there would be a problem with insurance if we left, which was actually a lie. I was able to confirm that our insurance would cover everything, and I also let the doctor know that if she didn’t approve the transfer then I would be packing up my son and walking right the fuck out the front door with or without her permission. She conceded and we were able to arrange a private ambulance transfer to MSK. I will never forget that ambulance ride. I knew when the ride ended and we stepped into the new hospital, we would begin facing this cancer diagnosis head on. The thought of Calum starting chemotherapy scared the shit out of me. I had no idea what was ahead, but I knew he had cancer and his body was about to be filled with poison in order to kill the disease and I knew that when we arrived at our new hospital, we would never return to life as we knew it. It was terrifying.
I tried to make the ambulance transfer fun for him. There were lots of tools inside and we played music on air instruments on the way down the FDR Drive. My son, of course, got to play the drums, which is, as everyone knows, the least embarrassing air instrument to play by a landslide. I made one of the EMT’s play the air guitar, which I felt was sparing him, since I was asked to play the air saxophone, clearly the most fucking ridiculous looking thing on earth. After about an hour in the ambulance, we arrived at the front entrance of the hospital, where Calum was wheeled onto an elevator and up to the pediatric oncology floor, where we began the first day of our new lives.
I never thought I would have the strength to step foot on a pediatric oncology unit, let alone live on one with my first-born son. Upon arrival, we were showed to our room and briefed by our doctors on what a standard treatment protocol of ALL entails. We were told about all the potential, long-term side effects of chemotherapy and the risks of the procedures he would have to undergo, including the placement of a port in his chest. I can’t remember much more of that conversation outside of the fact that nothing they were saying really mattered – I just wanted to sign the paper and get started.
The next morning, we had a repeat of some tests so the the hospital could use their own lab samples and we began treatment. Later that week we found out there was no cancer detected in his spinal fluid, which was beneficial, prognostically. We were still waiting on results of genetic testing which also might affect his prognosis, but that would take another couple weeks to get the results. Now, we would wait to see how his body reacted to the chemo. We had good reason to believe it would work, but we would have a much clearer picture by the end of the first month. The goal of  treatment is to destroy all the cancer within one month. If that happens, the patient is officially in remission and, if not, more aggressive treatment options would need to be visited. We were praying to God we wouldn’t have to consider alternatives.

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