Sandy Michalski

Sandra Michalski was born April 1, 2005. We should have known immediately she was going to be funny and goofy having been born on April Fool’s Day. Everyone knew her as a beam of sunshine. She always had a smile, was full of laughs and enjoyed making jokes, playing, coloring and making silly faces. Playfulness simply poured out of her. One time she got out of her bath, and still soaking wet, ran into her aunt’s bedroom and covered herself in baby powder. Needless to say, we had 2-year-old girl paste prints all over the bedding and walls. The look of pure joy on her face made it impossible to be angry.

Being such a playful and joyful child it was quite apparent to us when something changed. Sandy celebrated her second birthday at Chuck E. Cheese in April of 2007, in her favorite Dora the Explorer outfit, surrounded by all her family. Around July of that year is when we noticed a shift. She wanted to play less, eat less, and become more docile and a less glowing toddler. I took her to her pediatrician, however with little more symptoms than lack of playfulness, my concerns were dismissed as Sandy simply becoming a finicky toddler. Unable to believe my little girl had changed so much so rapidly, I began taking her to her pediatrician multiple times a week and did so for several weeks. Each time I was told it was likely dehydration, or growing child pains, or as a new mom I was worrying too much. Then, one night her left eye seemed cross-eyed, so I immediately called the Emergency Room of her pediatrician. I was told that her Dr had called ahead and let them know I was an overly worried mother and advised me to wait until morning and see if it corrected itself. Out of frustration and desperation we took her to the Upstate Emergency Room. Thankfully, there we were met with urgency and care as soon as we walked in. The staff brought her right to the pediatric wing and started running tests to figure out what was going on with our little girl. Within 24 hours of checking in we received a diagnosis: Stage 4 Neuroblastoma. I remember a female doctor with long dark hair and one of the most soothing, kind voices I had ever heard gave us the diagnosis. My throat choked closed as I held Sandy while receiving this news. Without shedding a tear, I asked the doctor: “What do we do now?” to which she replied: “The chemo is already on its way upstairs now.” Then there it was. We were treating my daughter for cancer. Oncologist Gloria Kennedy stayed with Sandra her entire time at Upstate.

We got right to work treating her and soon would be spending months at a time in-patient on the pediatric oncology floor. Neuroblastoma grows on the nerves, which is why her left eye had gone cross eyed. A tumor had grown around her optic nerve and had crushed it which would affect her sight for the rest of her life no matter how the cancer treatment would turn out. I was also told she had a tumor the size of a grapefruit in her renal area pushing into her stomach which caused her poor appetite. I kept thinking: “How can an entire grapefruit be inside such a little 2-year-old tummy?”

It was a fog of months of treatments. Sandra underwent 7 rounds of chemo, multiple surgeries to remove the tumors, and 2 bone marrow transplants. I was able to stay with her the entire she was in the hospital. I quit my job, gave up our home, and dedicated myself full time to being with my daughter. I could not imagine leaving a toddler alone for even a moment with how terrifying all of this must have been for her. Because of this I depended on help from programs to help with simple things like meals day to day. When Christmas came and funds were slim because of me not working, the hospital delivered a table full of gifts to the kids on her floor. It was so heartwarming and I remembered crying because Sandy was able to have a Christmas morning as a toddler should have, even though we were in a hospital room. Every provider, nurse, clerical staff member, and anyone who met Sandy was kind and honored to be a part of our journey. The support of the hospital, and the programs they connected me to, kept us afloat in a way I couldn’t be AND be there for my daughter. They accommodated all her silly requests from where she liked her blood pressure taken (on her leg NOT on her arm lol) to allowing her to come to surgery and procedures in full gown and heels because it was scary, and she should be allowed to feel her best in those situations. Because of the level of support, we were shown I was able to just be her mom. I got to help her put on her costume jewelry and read her books when she asked. We would watch Dora the Explorer for days on end. We would play guitar with Miranda, the music therapist, who would come around and visit, what felt like daily. Sandy adored Miranda and they would have their own disinfecting rituals when they would play with their instruments and laugh and make music. Sandy was able to work on her colors, her counting and potty training, like any other 2-year-old does, while in Upstate. What an amazing feeling to watch my daughter still able to be a child while fighting stage 4 cancer.

After the rounds of chemo, surgeries and second bone marrow transplant, things were looking positive. After a scan for active cancer cells, we were hopeful this would all be behind us in the next few weeks. Then one day the staff noticed her oxygen levels decreasing and it seemed like all at once it went from something they were watching to moving us to the ICU. Sandy had Sepsis and they were aggressively trying to fight off the infection and fluids accumulating inside her. Since we were planning for all of this to be behind us in a few weeks I had gotten a new home for Sandy to start her healthy life in. I was at that new home setting unpacking her favorite dishes into the cupboard when I got a call from the doctor asking me to come back in immediately.

I remember the doctors showing me images of the fluid building and I was once again feeling as though I was in a fog as they told me she likely only had days left. The fluid began to build so rapidly that they had to put her in a medically induced coma to try and fight it for her. There were syringes full of fluid being pulled out of her every couple of hours. They tried every medication they could, but between the fluid building and her heart rate from the medication she only made it another day before we lost her. It was just after 1am when her heart gave out and time of death was called. As we grieved, I noticed her doctors, nurses, and everyone else she had met in Upstate came in to give their condolences. They came in from their shifts, they came in from their homes in the middle of the night and they grieved with us our loss of this glowing, playful, and kind child.

Leaving felt so strange. I had spent so many months there with Sandy fighting her cancer that leaving the hospital, especially without her, felt surreal. She passed February 17, 2008, less than 8 months from her diagnosis, and just about 6 weeks before her 3rd birthday.

Since losing Sandy in 2008 she gained a little brother, born in 2010, 2 years after she passed. He has seen all her pictures and videos and has listened to all the great stories of his sister. We still gather as a family where she is buried, every year on her birthday. All her aunts, uncles, cousins, and beloved friends get together with cupcakes and sing Happy Birthday to her every year. Then we spend time with her, catch up and chat. Sandra is my daughter, and I think about her everyday as any mother does their child. She is still very much a part of our lives and has never truly left us. She was a full, vibrant child, who was so much more than her cancer which she never let it bring her down. The strength of a 2-year-old is unmeasurable. Children deserve so much tenderness and care during times of terrifying circumstances. I am grateful to have had her love in my life, which I still carry with me, and for the care that Upstate showed both of us during our journey.