Monday
The Morning
It was early Monday. My teachers, friends, and even my little brother were boarding buses and getting into cars to head into school. Our neighbors warmed up their cars before embarking on their chilly Monday-morning commute. The big news story from the weekend was a huge blizzard that paralyzed the East Coast from Washington to Boston. My big news story- cancer.
The Secret
Nothing seemed to have changed as everyone went about their normal routines. "I shouldn't expect a change though- we haven't told anyone." Aside from my doctors, the AML diagnosis was a secret that only my Dad, my Mom, and I shared. My little brother knew that "Hil is sick," but that was the extent of it. At some point, my parents would have to make The Call to school but for right now, it was a secret. To be honest, I'm not 100% sure why it was a secret but I didn't challenge my parents. Eventually, I would learn that a cancer diagnosis is in some ways like winning the lottery. It's so rare that no one ever expects their friends or family to 'get picked.' This ends up providing a certain window for the affected party to square away any logistics before letting the word spread (i.e. insurance policy, leave time, finances, etc).
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| Sledding at the Capital building. |
The Secret
Nothing seemed to have changed as everyone went about their normal routines. "I shouldn't expect a change though- we haven't told anyone." Aside from my doctors, the AML diagnosis was a secret that only my Dad, my Mom, and I shared. My little brother knew that "Hil is sick," but that was the extent of it. At some point, my parents would have to make The Call to school but for right now, it was a secret. To be honest, I'm not 100% sure why it was a secret but I didn't challenge my parents. Eventually, I would learn that a cancer diagnosis is in some ways like winning the lottery. It's so rare that no one ever expects their friends or family to 'get picked.' This ends up providing a certain window for the affected party to square away any logistics before letting the word spread (i.e. insurance policy, leave time, finances, etc).
The Drive
As we drove from my house to Children's Hospital, I wondered how my friends would respond to my absence. "Oh, she must be sick today," I figured they would say. Being sick though, was something I never did. In fact, I was 'Miss Perfect Attendance' every year (with the exception of the Jewish High Holidays). Not one sick-day and then... Leukemia.
"Will I still be able to play softball this summer? Will they let me take accelerated classes next year? Am I going to lose my hair?" Somehow it was the hair thing that hit me the hardest at first. Maybe it's because I was 12 or maybe because a bald head is all too often a sign that someone is dying... "Dying? Am I dying? I feel sick but not dying sick."
Luckily for me and unluckily for my Dad, it was a normal Monday in Buffalo and people were driving into the city to go to work. The other cars gave me an opportunity to suppress the scary thoughts and do a little daydreaming. Unfortunately, they did not make the drive any less stressful for my Dad. He had to prove his driving skills worthy yet again, but this time with the added challenge of dealing with angry Monday morning commuters. Fortunately, my Dad is an all-star and we arrived at the hospital ready to start a challenging 10-day battle in what would prove to be a much longer war.
The Beginning
I was officially admitted to the 8th floor at 10:15am. Everything started off somewhat slowly. I had more blood drawn to assess my disease status, determine if I needed blood and/or platelet transfusions, and evaluate my titers for various viruses. Of course, I had yet another physical exam. After the ER visit, I was already becoming accustomed to the routine... Several deep breaths then breathing normally. A somewhat painful massage of the huge lymph nodes in my neck and under my arms. I would show off the petechiae on my legs, then I would lay down and my enlarged spleen would be poked... I didn't mind, because I knew at some point the assessments were going to be the easiest thing on my agenda. Cue the first year Resident...
As you may know, once a med student graduates from med school (and passes the boards), they become a doctor and in most cases, a Resident. There is a first for everything and in this case, I was the first person receiving an IV from this resident. I'm certain that learning to start an IV isn't an easy task and I'm even more certain that starting your first IV on a 90 pound 12-year-old girl who was diagnosed with cancer 2 days prior is just a bad idea. But there I was, in need of an IV. I'll save you the painful details but to summarize, I was poked 4 separate times on the back of my hands. By the second poke, my parents were pretty annoyed. By the fourth poke, they were demanding someone else. I wish I could say I was a champion, but I think I lost that title as I sat on the edge of the bed grinding my teeth and shedding a few tears while the doc continued to twist the IV. In the end, I had a new IV to show for all of the pain and could start getting some much needed meds and blood products.
Protection from Chemo
"I need protection from Chemo? Wait, I thought chemo was saving my life?" My physicians explained that I would be taking allopurinol 3 times a day to protect me from some of the side effects of this first round of intense chemo.
As I would learn over the next couple of weeks, treating leukemia was a bit of a game. The goal of first line cancer treatment is to kill lots and lots of cancer cells; however, killing this many cells in a short amount of time can be very dangerous. When the dead cells break open in the blood stream their contents get released into the blood causing the uric acid levels to rise. This can cause crystals to form in the kidneys and potentially cause massive kidney damage. My newest medicine, Allopurinol, worked to prevent the conversion of 'the cell guts' into uric acid and would help keep my kidneys working as much as possible.
Looking Inside My Bones
When your bone marrow is sick, it needs to be examined. Unfortunately, there's no easy way to examine bone marrow. Blood counts give you an idea of what's going on with your bone marrow but oncologists don't like to give kids chemo based on an idea- they like to have something more concrete. Thus, I had the privilege of experiencing my first bone marrow aspirate and biopsy. I say 'privilege' because it truly was. I was given so many drugs, I barely felt a thing (except maybe a little euphoric).
With that being said, long before the drugs set-in I was putting on my game face. Doctors described the process to my parents and me- "A bone marrow aspirate involves sticking a long needle into the hip and extracting some bone marrow. Following the aspirate, a biopsy will be performed, where a cylindrical piece of the bone is removed." I was told that both of these assessments were necessary. The aspirate would help give more information about my leukemia including any unique cytogenetics, either good or bad (think chromosomes). The biopsy would help provide some insight into the "landscape" of my bones and bone marrow, and of course the leukemia.
The whole 'needle into the bone' thing seemed a little scary but my fear grew as I was told that it is 100% normal to hear "a crunching sound" as the small drill travels through your bone- ugh! Like I said though, there was a very happy ending to this particular procedure mostly due to the power of sedatives and pain meds. Although the procedure did not take that long, we would have to anxiously await the results for much longer.
The Calm Before the Storm
Once the drugs wore off, the evening proved to be less eventful than the morning. Since my hemoglobin/hematocrit was low and because I would be heading into surgery in the morning to trade-in my IV, I was transfused with a bag of packed red blood cells (PRBC). Unfortunately, I was still stuck with my IV until the following day. IVs are smaller than central catheters/broviacs; therefore, the transfusion bordered on painful. On the plus side, my nurses were the bomb. They immediately placed a warm pack over my IV and the remainder of the transfusion was much better.
Since my platelets had dropped since Saturday and because I was about to have a surgical procedure, I was also transfused with my first pack of platelets, which lasted for another 2 hours.
It had been a long day and I had been made NPO (nil per os= nothing by mouth), so going to sleep that night wasn't too hard. My nurses had a steady stream of fluids hooked up to my IV though, so I had to tolerate the long tubes hooked up to my hand and the board keeping my wrist from bending due to the IV. I'm certain that first night wasn't easy for either one of my parents, especially since my mom would be sleeping in a reclining chair for the night.
As you may know, once a med student graduates from med school (and passes the boards), they become a doctor and in most cases, a Resident. There is a first for everything and in this case, I was the first person receiving an IV from this resident. I'm certain that learning to start an IV isn't an easy task and I'm even more certain that starting your first IV on a 90 pound 12-year-old girl who was diagnosed with cancer 2 days prior is just a bad idea. But there I was, in need of an IV. I'll save you the painful details but to summarize, I was poked 4 separate times on the back of my hands. By the second poke, my parents were pretty annoyed. By the fourth poke, they were demanding someone else. I wish I could say I was a champion, but I think I lost that title as I sat on the edge of the bed grinding my teeth and shedding a few tears while the doc continued to twist the IV. In the end, I had a new IV to show for all of the pain and could start getting some much needed meds and blood products.
Protection from Chemo
"I need protection from Chemo? Wait, I thought chemo was saving my life?" My physicians explained that I would be taking allopurinol 3 times a day to protect me from some of the side effects of this first round of intense chemo.
As I would learn over the next couple of weeks, treating leukemia was a bit of a game. The goal of first line cancer treatment is to kill lots and lots of cancer cells; however, killing this many cells in a short amount of time can be very dangerous. When the dead cells break open in the blood stream their contents get released into the blood causing the uric acid levels to rise. This can cause crystals to form in the kidneys and potentially cause massive kidney damage. My newest medicine, Allopurinol, worked to prevent the conversion of 'the cell guts' into uric acid and would help keep my kidneys working as much as possible.
Looking Inside My Bones
When your bone marrow is sick, it needs to be examined. Unfortunately, there's no easy way to examine bone marrow. Blood counts give you an idea of what's going on with your bone marrow but oncologists don't like to give kids chemo based on an idea- they like to have something more concrete. Thus, I had the privilege of experiencing my first bone marrow aspirate and biopsy. I say 'privilege' because it truly was. I was given so many drugs, I barely felt a thing (except maybe a little euphoric).
With that being said, long before the drugs set-in I was putting on my game face. Doctors described the process to my parents and me- "A bone marrow aspirate involves sticking a long needle into the hip and extracting some bone marrow. Following the aspirate, a biopsy will be performed, where a cylindrical piece of the bone is removed." I was told that both of these assessments were necessary. The aspirate would help give more information about my leukemia including any unique cytogenetics, either good or bad (think chromosomes). The biopsy would help provide some insight into the "landscape" of my bones and bone marrow, and of course the leukemia.
The whole 'needle into the bone' thing seemed a little scary but my fear grew as I was told that it is 100% normal to hear "a crunching sound" as the small drill travels through your bone- ugh! Like I said though, there was a very happy ending to this particular procedure mostly due to the power of sedatives and pain meds. Although the procedure did not take that long, we would have to anxiously await the results for much longer.
The Calm Before the Storm
Once the drugs wore off, the evening proved to be less eventful than the morning. Since my hemoglobin/hematocrit was low and because I would be heading into surgery in the morning to trade-in my IV, I was transfused with a bag of packed red blood cells (PRBC). Unfortunately, I was still stuck with my IV until the following day. IVs are smaller than central catheters/broviacs; therefore, the transfusion bordered on painful. On the plus side, my nurses were the bomb. They immediately placed a warm pack over my IV and the remainder of the transfusion was much better.
Since my platelets had dropped since Saturday and because I was about to have a surgical procedure, I was also transfused with my first pack of platelets, which lasted for another 2 hours.
It had been a long day and I had been made NPO (nil per os= nothing by mouth), so going to sleep that night wasn't too hard. My nurses had a steady stream of fluids hooked up to my IV though, so I had to tolerate the long tubes hooked up to my hand and the board keeping my wrist from bending due to the IV. I'm certain that first night wasn't easy for either one of my parents, especially since my mom would be sleeping in a reclining chair for the night.
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