We heard the little footsteps in the hall of our daughter Sydney, five, and our son Jack, three, racing towards our room. Their eyes were wide with excitement that the Easter Bunny had come. My husband, Adam, and I had just bought our house about nine months prior to that Easter Day, and the kids had been so worried the Easter Bunny wouldn’t know where to find them. But thankfully, his footprints were all over the house (every year since we had children, I would make baby powder footprints). After the kids finished their Easter egg hunt, I started making Easter dinner. This would be the first time I was hosting a family holiday for my extended family, plus it was going to be the first time many of our loved ones would be visiting our new home, so you can imagine I was under some stress. Now add in the COVID-19 pandemic that had recently sent the world into lockdown, and life was even more hectic. Adam and I had just been laid off like so many others during this unprecedented time. I thought I knew stress…
As we struggled with all of the challenges of young adulthood in a COVID filled world, we began to notice Sydney was also behaving differently. She was missing her typical spark and youthful enthusiasm. At first we chalked up the change in her behavior to her being bored, not being in school, and not being at dance. Her routine and schedule were all messed up, not to mention mommy and daddy were home way more due to being out of work. We thought that maybe it was her just being a typical five year old who wants to hang at home and watch TV. We couldn’t sort it out. My husband and I had both noticed a significant change in Sydney over the past few months. She has been so tired, EXTRA tired, and let me tell you Sydney has slept passed 5:30 a.m. maybe ONCE in her lifetime. She had been lethargic and very emotional. Her mood swings had become so intense and significant we considered that she may be experiencing some type of early puberty, and we were not the only ones to notice her sudden change in behavior. Her teachers at school, her aunts, her Nana had begun to notice and mention that Sydney was just NOT herself. This morning was different though. I felt it.
After they had their Easter egg hunt, Jack wanted to play outside. He got dressed and ran out to the yard, Sydney however wanted to stay on the couch in her pajamas. I was getting things ready for my in-laws to come over when, BANG! I heard the sound echo through the house and instantly I heard my little girl crying. I rushed out of the kitchen to find Adam picking her up off the floor. She had slipped on the Easter Bunny’s footprints and fell and hit her head. Initially, Adam and I thought that she had a concussion; she was falling asleep, refusing to play, crying a lot, and just not herself. I kept flashing back to our hikes these passed weeks and how halfway through she would start to cry and complain she was tired. Adam and I ignored her complaints and again chalked it up to her age and the stress of COVID-19.
HOW DID I NOT SEE?!
Almost an hour and a half after she fell, she was still crying and she couldn’t explain why. I wish I could say it was at that moment that I knew something was wrong, but it wasn’t. I tried to calm her down and sent her to her room to get dressed for Easter dinner.
HOW DID I NOT SEE?!
After sending Sydney to go get dressed, I returned to the hustle and bustle of a busy holiday household, I put the ham in the oven with the vegetables, and I went to get ready. As I was showering, Sydney began crying again, a different type of cry, I heard a small voice whimper for “mamma” followed with a loud painful cry. I opened the door and saw Sydney making her way to me in the hallway, barely able to stand, about to fall over and leaning on the wall for support. I rushed to catch her, and I yelled for Adam. In that moment of holding her, it all came into focus; my mind flashed to the past month or so, all of the small behaviors and actions that were just not my Sydney.
HOW DID I NOT SEE?!
I knew this was something different. I felt it.
The family arrived, Sydney slept.
We ate our late lunch, Sydney slept.
We went outside, Sydney slept.
I had enough! I called my grandmother, who was a nurse, for advice and guidance. She recommended calling Sydney’s primary care physician to speak to the on call. The doctor on call told me I could either wait until the morning to bring her to see her doctor, or I could take her to a walk in to be checked out. With everything going on regarding COVID-19 I couldn’t even think to take her to a walk in. I figured I’d wait for her doctor’s to open the next morning. Desperate for answers, we did what most people do, we turned to the internet and speculation. Adam started mentioning how Sydney doesn’t eat a lot of meats, or fish and that maybe this could be a vitamin deficiency. I also learned low iron ran in my family, so I started to think anemia. But the more I thought about it, the more I began to have an urge to go inside and look at her. Laying on the couch, barely awake and instantly something told me to bring her in. I went online I booked her appointment for 3:30 p.m. at the Fairhaven walk in.
When we got to the walk in we planned to have her tested for a vitamin deficiency. The nurse at the walk in sent us to St. Luke’s Hospital for testing. When we got to the hospital Adam pulled right up to the door and I went to check her in, they informed me they only allow one adult in with her, due to COVID-19. I went in with Sydney while Adam waited in the car. They checked Sydney in and brought her into a room, I explained the symptoms again and also explained her behaviors over the past few months. It all seems so repetitive. They told me they felt that they should draw blood. At 4:47pm I was holding Sydney down for the IV, as she screamed “Mommy help me” in tears. I kept telling her it would be ok and we will be home soon not once thinking we wouldn’t be seeing home for a while.
The doctor finally came in at 5:18pm and asked to speak to me outside the door.
HOW DID I NOT SEE?!
He informed me that they need to do more blood work to determine her blood type and that the hemoglobin count was low the first time and with that they want to test again to be 100% accurate before determining any cause of this. I can’t even remember asking what that meant or anything, I just said “Ok, go ahead”. I went back into the room, held my girl, and updated Adam. I told Adam that when the doctor came back in with the second set of lab results I would call him.
HOW DID I NOT SEE?!
When the tests came back the doctor had me follow him into another room, a vacant room..to discuss the results with me there and Adam listening through the phone. He informed us that she is highly, severely anemic. That her hemoglobin levels were very low. Average levels are a ten, and that Sydney’s were just making a three. He explained that we would be transferring her to Boston Children’s Hospital for more accurate testing, but that he felt there may, could be… cancer in Sydney’s blood.
When you hear the word cancer your mind doesn’t go right to children, I know mine didn’t. It’s not every day that you go into the grocery store and see a mother shopping with her child who’s battling cancer. You see commercials on tv and billboards to raise awareness and funds to one day find a cure but never really see it out in the world right before your eyes, I know I haven’t. So when it came to my daughter being associated with the possible diagnosis of cancer, it was almost like I fell into a dark fog.. I just remember everything becoming blurry.
HOW DID I NOT SEE?!
I cried with Adam still on the phone and I could hear he was not ok either. Here we are, me in the hospital with her and him waiting in the parking lot, getting the news that our sweet angel could have CANCER. I sucked up my tears, I let the red in my face fade and I walked back in that room. It was the first time I had to put on a brave face for my daughter. I held her close for another hour and waited for the ambulance.
Everything began moving at such warp speed, by 7:11pm we were in the ambulance and on our way to Boston. By 8:56pm we were all at Boston’s Children’s Hospital. Sydney was officially admitted, doctors and nurses ran tests and took blood. By 9:30 it was confirmed that she would not be going home for the night, due to more tests being run on her blood. So we waited…
And wait some more..
10:50 pm rolled around and I was sitting in a separate room with Adam by my side and a doctor sitting in front of us, head on. He asked what we had been informed of. We explained the situation, and the possibility of cancer being in Sydney’s blood. The doctor stared, his face half hidden behind a face mask.. and with a somber tone, he confirmed that Sydney did in fact have cancer in her blood. At that moment, my entire body froze, and I let out a gasp so powerful it felt as if my soul left my body, like everything warm inside of me was trying to escape. I stared at the doctor for what felt like eternity. His words echoed in my head…and in seconds I was short of breath sobbing.. “my baby girl”. I just wanted to wake up from this nightmare and be back home, holding my kids with Adam on my side. “I’ll wake up. This isn’t happening.” Slowly, the tears faded, and I struggled to regain control of my breathing.
I don’t think anyone is ever really prepared for bad news. We may anticipate it or even expect it, but in those moments leading up to it, we hold on to that sliver of hope so tightly that when it is ripped away, we are not prepared for the reality that our fears have come true. Once I heard the news from the doctor, I went into an emotional shock of sorts, I was looking at the doctor and Adam, but everything was in a haze as a numbness overtook my senses. I could see nothing, I could hear nothing. I assumed there was a conversation, but to this day, I can’t remember a word that was said. Adam held my hand, and we cried.
I would have loved for the universe to come to a halting stop so that I could have processed this news, and dealt with the sudden overwhelming emotions I was feeling; but the reality of the situation was that the world was not going to stop no matter how badly I wanted it to. So, I settled into my numbness and did my best to focus on the immediate tasks at hand.
I turned to settling Sydney into her new room, I guess you could say our home away from home considering this is where we would be for some time now. I scanned the room, seeing the medical bed, the distinctly hospital-esque tiles on the floor, and the medical equipment neatly, but prominently displayed throughout the room, and I longed for the normalcy of home. But laying in the middle of the bed was something more important than home, my daughter, and I knew that this is where we needed to be.
As the doctors kept running tests to better diagnose Sydney, I kept hearing that word “cancer” over and over, and every time I heard that word, a new type of anger rose in me, “Fuck that word.” I thought in my head. I could feel some resolve start to build in me, call it my mama bear instincts, but I knew that this word, this thing was attacking my cub, and it would have to get through me first. So yeah, “Fuck that word.” I thought, and I still do.
As I began to gather my resolve, the doctors and nurses worked diligently to diagnose Sydney. The staff would explain each step in mini crash courses that presented new and confusing vocabulary and concepts in laymen’s terms. They ran tests that checked the “blasts” in her blood cells a little more in depth to determine the kind of cancer Sydney has. They also began a blood transfusion to boost her good blood cells since her levels were beyond low.
Adam had already gone home to be with Jack, when I got brought into another room with the Oncologists. I started to feel lost, I needed Adam. I called him and put him on speaker phone so we could be able to listen to what the doctors had to say together. I sat down in the blue chair set up and I looked at the doctors over their masks, into their eyes..
The doctors informed Adam and I that Sydney’s form of cancer was leukemia. They told us that on Tuesday, April 14th she would need to have her bone marrow tested because that is a spot the cancer likes to “hide”, this is called a bone marrow aspiration and biopsy. She would also need a lumbar puncture, which collects fluid from the spinal cord to determine if there is cancer in her spinal fluid as well. Afterwards, she would have an IV put into her arm called a PICC Line that would be a more permanent IV. These tests would better inform the doctors and team on what KIND of leukemia Sydney has.
B-Cell Acute Lymphoblastic Leukemia. This is the name of Sydney’s Cancer. We later learned that Sydney got moved from Low Risk to High Risk due to a gene deletion in her blood called “IKAROS”.
Upon learning this information, Adam and I learned the treatment phases and somewhat how they would go. We spent thirty-eight days in patient with Sydney. During those thirty-eight days, COVID-19 continued to alter the world drastically, robbing Sydney of the same experiences many other children had had in the hospital. Visitor restrictions meant that Sydney was forced to be kept from her brother, her grandparents, her aunts, her uncles, her cousins, her dog and her Daddy for significant stretches of time during the thirty-eight days at the hospital. Additionally, due to COVID-19, the resource room at the hospital where children could go and do a craft or two and socialize with other in patient children was closed. The staff told us about Pizza Friday, how they would typically all get together on Fridays and the Child Life Specialist would take the kids to have pizza while the parents went to the cafeteria. Cancelled. I know this seems trivial, to complain about a pizza party being cancelled, but it wasn’t about the pizza, it was about normalcy, hope, unity and companionship. COVID had taken those things away and left us alone, confined to our room, just me and her eating pizza by ourselves. Those were hard times.
On April 29, 2020 Adam and I celebrated our fourth wedding anniversary. Instead of celebrating, we experienced Sydney’s first haircut. And when I say first, I mean first. Sydney had never had a haircut. She has always been in love with her hair. She had natural ombre beach curls that framed her beautiful big green eyes. People would always comment about how beautiful and full her hair was, and her eyes would light up with pride. So when we first got the hospital Sydney saw another five year old girl further into her treatment, it was scary for Sydney because this little girl had no hair. She asked if her hair would do that. I had mapped out a quasi-type speech in my head for this situation, but in that moment, my words left me, and I just held her close.
As her treatment began to progress, her hair began to fall out and cover everything. And although I was informed and thought I was prepared for this, I learned I actually wasn’t. It was coming out in chunks, right in my hands, in the shower, clogging the drain. Hair was all over her pillows and wrapping and tangling in her PICC Line tubing. I knew cutting her hair would kill her spirits. She wanted nothing more than “long beautiful hair for Aunty Meg’s wedding” coming up. She was, she is the flower girl. It was really hard to get through, but we did it together. I watched her sob, I watched my husband sob, and I sobbed as I combed through her long and beautiful hair for the last time. I braided her hair, and I cut the braid off as she held Adam’s hands and cried. I still have the braid.
The moment of cutting Sydney’s hair was significant. For a child, hair is something they can see and touch and hold. To have that taken away because you are sick makes the sickness tangible in a way that words and ideas cannot. But, more importantly, it also brought my daughter’s resiliency into focus for me. I realized what a bad ass my daughter is. I had never realized the bravery and strength Sydney had until these past few weeks. She had shown how strong she had been this whole time! How much of a fighter she is.
A few days later, her hair started to fall out even more. She said she was sick of it getting in her mouth and food while she ate. I told her what we could do and what I thought would be best, that Mommy could shave it. I reassured her it will grow back and left the choice up to her. She chose to use the clippers we used on Daddy a few days before. I shaved her head… and she laughed because she said it tickled. I don’t think she quite understood though because afterwards she rubbed her head and asked why it felt like Daddy’s. She spent the remainder of the night very quiet, and I just kept telling her that this is a reminder that her medicines are working hard to make her better.
It was May 18, 2020 and my little super hero went under anesthesia and had three major procedures done and came out on top! She had her PICC Line taken out of her arm and her new Port put into her chest/heart. She had her third Bone Marrow Biopsy done, and her third Lumbar Spinal Puncture with Chemo insertion. She would have to endure two new chemotherapy medications through her port, but after a hard thirty-eight days we would be going HOME.
It is now August, and as much as everyone keeps talking about how fast summer is coming to end, I can’t help but feel the slow paced effect it is having on myself. Watching your child struggle through something like cancer is really the hardest thing I think I will ever endure. To see my five year old have to have her very first hair cut in the hospital UN-WILLINGLY, to see her go through physical pain, vomiting more often than not, procedure after procedure, it’s all so gut wrenching, and yet at the same time it has opened my eyes to see Sydney in a different light.
Sydney wasn’t always tired, moody or lethargic. She couldn’t wait to start kindergarten this year. She is super, super smart and sweet, and a bit of an old soul. She is so gentle and nurturing that it scared me from time to time that when she would grow older, she would be too passive to take on challenges. But seeing her battle cancer has made me realize her passiveness is anything but weakness.
Also, she’s very in tune with people and animals and their feelings. She’s a little fair-haired Snow White, believing that all birds and animals come to see JUST her! She has big plans for herself and she wants to be a veterinarian when she grows up. If you ask her what types of animals she would treat, her list will range from kittens, to Roo-Rats, to Komodo Dragons and back down to puppies. She also loves her dog, Boomer. Some of her favorite things to do, along with her Tap & Ballet classes, are drawing, coloring, anything artsy, and learning to spell everyone’s name. She wants to be with Daddy outdoors doing whatever he’s doing, planting a garden with Mommy, going on walks through the woods and playing with her cousins. She is full of life and a joy to be around.
Sydney is also the best big sister to Jack and loves him so much. They’re not like your average brother and sister. They are best friends! When Jack was born he had his own handful of health issues and personal struggles. Sydney was RIGHT THERE by his side through all of his doctor appointments, helping with his food, handing me towels when he threw up uncontrollably, singing “You Are My Sunshine” when he would cry, or needed to take medicine. Being away from my son for so long and returning home to see he has grown and thinned out broke me into pieces. I have never been away from my children, and in a blink of his tiny eyes I disappeared for thirty-eight days.
Since Sydney has been diagnosed, I have struggled to persevere at times and quell the anger that rises in me when I think about circumstances that have taken over our lives. But, anger and pity will not change them. And more importantly, anger and pity will not heal Sydney. It is more important to find the normalcy in all of this, to help Sydney find a balance between her physical limitations and her emotional needs. Allowing her hope and love to shine.
When we finally came home on May 19th after thirty-eight days spent in-patient it was really hard for me to adapt to being home. Though we still have to travel to Boston for seven day admissions or twelve hour clinic days, I would say as a wife, and now a mother to a child with cancer, adapting to this new “normal” has been the hardest struggle. Having the huge support system that we have is the best remedy. People from all over putting in their hands to pray, to donate, to make a meal, to send a care package, to send a picture, to send a card, to just sharing her story is all I could ask for. Spreading her story, stretching her prayer chain for as far as we can see.
Seeing her fight with strength and courage, and seeing her sick as can be one day, but still look at me and smile hardens my resolve.
This road is long, and it’s all so uncertain, but when she smiles..
through her body aches
through her nausea
through her head aches
through her exhaustion
through her infusions
through her Port Accesses… (Sydney hates this one and it’s an absolute nightmare.)
When she smiles, I see a small glimpse of her back to herself again.
Sydney knows the word Leukemia, she knows the names of her medicines, and she knows the names of her chemotherapy. She teaches them to her brother and her family members. She will come to know that she battled something so much bigger than herself, and conquered it, and she will one day tell her story, from her own point of view. As for Adam and I, we have learned that time frames right now are not necessary as we have been told to take things one day at a time. As scary as that can be, it is relieving as well to know that we have today with our girl. So the days that she smiles and laughs and plays with her brother we soak them up, and the hard days where she is sick, and tired, and not the Sydney we know, we hold her. We hold each other. We pray. We hope, and we just Love every day, for every day is another day we have been gifted in spending with our children.