Hey Rochester Women! My name is Heather Zajkowski. I am a 33 year old mom (aka momcologist) of two amazing little girls and I would like to share a chapter of my life story with you.
A few months shy of a year ago was when we heard the worst news of our life. News that no parents ever thinks they will hear.
“Addison has Cancer.”
Even while living our worst nightmare amid the prime of a Global Pandemic we have so much to reflect upon and be grateful for. The “worst year ever” has brought some pretty amazing silver linings our way. Lets hit the rewind button and start from the beginning.
In early April of 2020 we received a phone call from our daughter’s pediatric rheumatologist that we were being referred to a specialist in hematology/oncology. “What exactly is that?” I asked as my knees shook and I slowly made my way to the floor of my laundry room, isolating myself from my two little girls who were happily playing in the living room. “We think Addison may have some sort of blood cancer.” The world actually stopped. Everything went black and it felt like someone sucked the air from my lungs.
My knees hit the as I tried to hold it together. I asked the doctor to please send everything he was about to say to me, in an email, so I could share it with her father. In that moment I lacked the capability to comprehend and retain any information. In January 2020 Addison started to have some pretty severe wrist pain. Just as sudden as it came on, it left. A week later, it was her elbow causing her pain. Pediatrician then refers us to Orthopedics, X-rays were taken, Possible ‘bone healing activity’ was found and she was placed in a little hard pink cast for a few weeks. Cast is removed and we were back at orthopedics a week later for that same wrist that was causing her issues. At this point, Orthopedics then refers us to a specialist in juvenile idiopathic rheumatoid arthritis. Hours long worth of appointments week after week, time taken from work and several blood draws later, here I am on the floor of my laundry room sobbing. Praying. Is this real life? Does my baby have cancer? How is this possible? Then she stops walking. Completely stops walking. Our first initial meeting with an oncologist, we were told that “these blood labs don’t scream leukemia, I don’t think she has cancer. I suggest we push the biopsy out a week or so.”
We immediately called her pediatrician to share the news. His demeanor was not of what I expected. He insisted that the biopsy not be pushed further out. That it needs to be done as soon as possible. To have data to back up his theory we were given an oximeter to monitor her heart rate as she slept for a few days.
Her heart rate was in the 190’s when sleeping. Her 4-year-old big sister’s heart rate was 80 when sleeping. Biopsy was scheduled for April 16th and that is the day our whole world was turned completely upside down. The procedure was scheduled for 7am. That morning started with Addison screaming in pain. “My legs hurt so bad, my legs, my legs, mama please make it stop!” We get to the hospital; the bone marrow biopsy is performed, and the sample was immediately sent to the lab for stat results. Because of COVID-19, only one parent was allowed at the hospital for the procedure. When she woke up from anesthesia, a member of the oncology team came into the room and with sad eyes proceeds to tell me the news that our child does indeed have blood cancer. B-cell Acute Lymphoblastic Leukemia to be exact.
In addition to this news, I was told we were being admitted to Golisano children’s hospital for the next 28 days, effective immediately. Treatment would begin now and would be a total of 2 and 1/3 years long. To top it off, only one parent is allowed to be with the child the entire stay. No switching. This meant that my four-year-old at home, was about to go a month without seeing her mom & little sister. This meant that my sick baby was going to go a month without seeing her dad and sister. Dad took care of big sister and held down the home front while mom took care of little sister at the hospital.
Two weeks before diagnosis, I was laid off from my executive committee position of HR Manager for the Hotel I was working at. Everything happens for a reason. Being laid off sucks. Pediatric Cancer sucks! But, finding the silver linings has got me through and kept me tough. I did not have to worry about the pressures of a career while getting my child well. We found creative ways to keep in touch and see each other while we were inpatient. From daddy and Charlotte pulling up to the roof top to wave at us and Grandma making signs so big we could read them all the way up from our room window. We made it work. We did what we had to do, and we got through those 28 days. This period of treatment is called Induction.
She was on several chemotherapy drugs to kill the leukemia cells in her body and steroids. She gained a lot of weight on these steroids it affected her in many other ways. She was mad, emotional and hungry all the time. When we got home, this was hard for her older sister to comprehend. Why was Addison being allowed to act this way without normal repercussions? Why did Addison look differently now?
It was a lot on our family, and it took some time to settle into a new routine. It felt as if overnight I went from a HR Manager, working mom to a stay-at-home mom, cancer caregiver and home schoolteacher. Human beings are amazing in the fact that they can adapt and overcome obstacles. I never signed up for this, but this is what my life is now. Nothing is ever permanent, and it won’t be this way forever, but for now this is the way it is, and I shall own it. Many people have reached out and said things like “You’re an inspiration! You’re so strong, I could never do what you do!” I can assure you this, yes you could. If you love your children, you will stop at nothing to keep them alive, well and thriving.
Addison is now in the Maintenance portion of her treatment protocol. This means less hospital visits but more medication at home. She will ring the cancer bell in June of 2022. We were handpicked to be these little girl’s parents. We have the strength to persevere and keep them thriving. It is the most privileged duty that I have ever had the opportunity of. One thing being a parent of a child with cancer has taught me is to not sweat the small stuff. Seriously, just don’t. Save your energy for the things that really matter. Our family has gone through some tough stuff this year but other families have it worse. Someone always has it worse.
Be grateful for all of life’s big and small blessings and be present always with your loved ones. Life is a gift and ever so often is taken for granted. I hope that this chapter in our story can shed some light on that. Thanks for reading along and thank you for lifting me up and giving me the courage to keep on keeping’ on!
