This photo of Natalie Grace (not quite 3-years-old at the time) was taken just hours before being diagnosed with cancer, August 16, 2012.
Five years ago Dan, Natalie and I experienced a horrible night. It was so much more then the average evening parents spend with a child fighting a cold or an earache. At least on those nights we're able to get some sleep amongst the coughs and cries....but last night (five years ago) was very different. Natalie's cries couldn't be comforted, she was moaning (in pain) and none of my usual mommy tricks were working. I rocked her sitting and standing, sang her favorite songs softly in her ear, she had her binky, her bunnies....I even tried giving her something to eat. She had a slight fever so I thought maybe that was what was bothering her so I gave her some Tylenol and watched slowly as the minutes moved on. Natalie wasn't quite 3-years-old at the time so she couldn't articulate what she was feeling exactly, so she simply whimpered repeating, "ouiee" over and over. |
It felt like the longest night of our lives, there was NO sleeping for the three of us and at one point Dan and I shared a look of concern that I'll now never forget. Looking back I'm so mad at myself for not just throwing her in the car and heading straight for the hospital knowing that this behavior wasn't at all normal for our girl. I thought about it for a hot second, but I remember thinking that I didn't want to be that paranoid parent...that we would simply wait until the next day then take Natalie back to the doctor.
Five years ago today, Hannah had woken up ready for another day of Kindergarten and Natalie had finally seen more content. Since she hadn't been screaming or moaning like she was all night I decided to head into work for a half day with the intention of coming home after lunch and taking her to the doctor. Before leaving though I took some photos of our girl as I was becoming more concerned about the random bruising along with the petechia that seemed to be taking over her body and her right eye that was already red and now was starting to swell. I figured that I'd call our pediatrician on the way into the city to leave a message letting them know I'd be in with Natalie later, then when I got to my office I intended on e-mailing those photos to the doctor.
Five years ago today, Hannah had woken up ready for another day of Kindergarten and Natalie had finally seen more content. Since she hadn't been screaming or moaning like she was all night I decided to head into work for a half day with the intention of coming home after lunch and taking her to the doctor. Before leaving though I took some photos of our girl as I was becoming more concerned about the random bruising along with the petechia that seemed to be taking over her body and her right eye that was already red and now was starting to swell. I figured that I'd call our pediatrician on the way into the city to leave a message letting them know I'd be in with Natalie later, then when I got to my office I intended on e-mailing those photos to the doctor.
Pics taken the morning of Natalie's diagnosis day. Here you can see the many petechia along with one of her many random bruises, this one in her hairline.
I walked into my office that morning, closed my door and before I could even put my bag down the phone rang and I could see it was Natalie's doctor returning my call from the message that I had left just minutes before. She asked me what was going on and as I began recapping our horrible night, she told me that she wanted me to bring Natalie in right away. She didn't tell me why, and I could tell that she didn't want to alarm me so she simply said, "rather then wait, lets just figure out what's going on."
So just like that I picked up my bag, opened the door and proceeded out of the office heading straight to my car. I was scared. I didn't know what of, but I hardly remembered my drive from Manhattan back to our driveway in New Jersey. In fact, my mother-in-law was standing in the doorway with Natalie and I just grabbed her, not even noticing that she wasn't wearing any shoes. I remember being shocked when I saw her because in the two hours that I was gone, Natalie's right eye had now looked as though someone had punched her with how red + swollen it had gotten in that short amount of time.
When we arrived at the pediatrician's office Natalie's doctor took her right away. I remember being overly concerned about her eye as I kept asking the doctor if she could give Natalie drops or something that would stop the swelling. She kept telling me that we would deal with her eye later, but first they needed to do a little blood work to see what was going on. At this point Natalie was lethargically laying against my chest, not even budging a bit as her blood was drawn. Twenty minutes later the doctor returned with a look that I will never forget. Again, she didn't want to alarm me so she simply said, "Natalie's blood is not reading properly on our machines, I'm going to need you to take her to the Emergency Room, I already called to tell them that you're coming." Normally I'm that parent that asks a million questions, but in this moment, seeing her face and feeling what I was feeling...nothing came out of my mouth. All I could muster up between my utter confusion and fear was, "so I'll take her to the emergency room now." Her reply was "yes."
So just like that I picked up my bag, opened the door and proceeded out of the office heading straight to my car. I was scared. I didn't know what of, but I hardly remembered my drive from Manhattan back to our driveway in New Jersey. In fact, my mother-in-law was standing in the doorway with Natalie and I just grabbed her, not even noticing that she wasn't wearing any shoes. I remember being shocked when I saw her because in the two hours that I was gone, Natalie's right eye had now looked as though someone had punched her with how red + swollen it had gotten in that short amount of time.
When we arrived at the pediatrician's office Natalie's doctor took her right away. I remember being overly concerned about her eye as I kept asking the doctor if she could give Natalie drops or something that would stop the swelling. She kept telling me that we would deal with her eye later, but first they needed to do a little blood work to see what was going on. At this point Natalie was lethargically laying against my chest, not even budging a bit as her blood was drawn. Twenty minutes later the doctor returned with a look that I will never forget. Again, she didn't want to alarm me so she simply said, "Natalie's blood is not reading properly on our machines, I'm going to need you to take her to the Emergency Room, I already called to tell them that you're coming." Normally I'm that parent that asks a million questions, but in this moment, seeing her face and feeling what I was feeling...nothing came out of my mouth. All I could muster up between my utter confusion and fear was, "so I'll take her to the emergency room now." Her reply was "yes."
Natalie was still passed out as I buckled her back into her car seat and headed to the ER. Another ride I can't remember driving, but I recall thinking and thinking and thinking...and in all these thoughts, not once did cancer cross my mind. My thoughts were just fear....like what the hell is going on right now?? I don't understand, just two days prior while in the same doctors office Natalie was diagnosed with a summer virus, not here I am driving like a bat out of hell heading to the emergency room.
Upon our arrival at the hospital, another exam and more blood was done. It was a good thing that Natalie was sleeping through these "pinchies" (AKA needles) or so I thought. Natalie's eye at this point was so swollen that it was becoming difficult to even see her eyelashes. How can an eye swell so much in this short amount of time? How is that even possible? About 20 minutes in, while I sat in the dark ER room with Natalie asleep against my chest, I began to feel a wetness dripping down my left arm. I assumed that it was drool since Natalie had been sleeping pretty hard so I very carefully began to shift her to my other side when I noticed that not only was her nose bleeding, but it wasn’t drool that I was feeling, it was blood slowing streaming out of Natalie's swollen eye, rolling down her soft, beautiful cheek and onto my arm. Horrified I turned to hit the call button however before I could reach it in walked a small team of about five people. I first noticed the doctor that had initially examined Natalie upon our arrival, she was leaning against the wall, head down with tears in her eyes. Before I could even ask what was wrong another doctor began speaking introducing herself followed by a man who would be our social worker. That is when I panicked....a social worker? Why the hell did we need a social worker? I looked at him, then turned to her and with tears in my eyes and a shaky voice I finally asked, "what's wrong with my baby?" That's when Natalie's doctor told me that she had leukemia. From that very moment on all I saw were somber faces looking back at me. Mouths were moving however I heard absolutely nothing. I remember watching everyone file out of the room except for that initial doctor who came to my side, rubbed my back and asked if she could make some calls for me. I declined her kindness and called Dan right away. Natalie’s diagnosis was a whirlwind of shock, disbelief, confusion, anger and lots and lots of sadness and tears. It was the day our old lives ended, and the first day of our new life had begun.
Upon our arrival at the hospital, another exam and more blood was done. It was a good thing that Natalie was sleeping through these "pinchies" (AKA needles) or so I thought. Natalie's eye at this point was so swollen that it was becoming difficult to even see her eyelashes. How can an eye swell so much in this short amount of time? How is that even possible? About 20 minutes in, while I sat in the dark ER room with Natalie asleep against my chest, I began to feel a wetness dripping down my left arm. I assumed that it was drool since Natalie had been sleeping pretty hard so I very carefully began to shift her to my other side when I noticed that not only was her nose bleeding, but it wasn’t drool that I was feeling, it was blood slowing streaming out of Natalie's swollen eye, rolling down her soft, beautiful cheek and onto my arm. Horrified I turned to hit the call button however before I could reach it in walked a small team of about five people. I first noticed the doctor that had initially examined Natalie upon our arrival, she was leaning against the wall, head down with tears in her eyes. Before I could even ask what was wrong another doctor began speaking introducing herself followed by a man who would be our social worker. That is when I panicked....a social worker? Why the hell did we need a social worker? I looked at him, then turned to her and with tears in my eyes and a shaky voice I finally asked, "what's wrong with my baby?" That's when Natalie's doctor told me that she had leukemia. From that very moment on all I saw were somber faces looking back at me. Mouths were moving however I heard absolutely nothing. I remember watching everyone file out of the room except for that initial doctor who came to my side, rubbed my back and asked if she could make some calls for me. I declined her kindness and called Dan right away. Natalie’s diagnosis was a whirlwind of shock, disbelief, confusion, anger and lots and lots of sadness and tears. It was the day our old lives ended, and the first day of our new life had begun.
Natalie’s first 28 days were brutal (the induction phase). On that day one, August 16th, she was immediately given blood, platelet and plasma transfusions (the lack of these three things is why she was so lethargic, had odd bruising and of course it’s why her eye and nose were both bleeding). Day two was surgery for our girl where they placed her port which would be her lifeline going forward as this was how she would "comfortably" receive her chemo, transfusions, fluids and anti-nausea meds, etc. Then began the evil steroid decadron (yes I mean evil) and chemo regime which consisted of vincristine, daunorubicin, pegasparagaus, cytarabine and methotrexate (some of these drugs were administered via spinal taps as well as through her port). The reason I specified 28 days is because on that 28th day another bone marrow aspirate was done in order to determine if Natalie would stay as a high-risk patient, or escalate to very high-risk. Unfortunately for our girl she failed this MRD (minimal residual disease) test which meant that she now had to be put under the very high-risk protocol. The “good news” as we were told was that this test told them that Natalie’s cancer had to be treated more aggressively. Had she just passed that test by a small margin and treated less aggressively, she would have had a higher chance of relapse. At this rate we hung onto any good that there was to grab as that was a devastating set-back for our family.
A letter that was sent to Natalie's pediatrician updating her on Natalie's first month of treatment.
The next 10 months were filled with daily/weekly clinic visits, LOTS of hospital stays and ER runs, chemo, chemo and more chemo, blood + platelet transfusions, well over a dozen spinal taps, bone marrow aspirates, weight gain, weight loss, nausea, chemo complications (methotrexate neurotoxicity) that caused seizures, and SO ON! When these 10 intense months were up Natalie had officially made it into the maintenance portion of her treatment which now meant that while she still took daily oral chemo, she only had to go to clinic once a month for her IV chemo, blood work and check-ups (and of course the occasional spinal tap). For the first time in nearly a year our family felt a little bit “normal” again (even though we were still crazy far from anything normal).
Some photos during Natalie's first 10 months of treatment.
Maintenance for my girl continued on for another year and a half until November 26, 2014 when she received her very last dose of chemotherapy, had a final spinal and was now considered off treatment and cancer free (where she has remained since that day)! I wouldn’t wish what we went through with Natalie on anyone as seeing her suffer was almost more then we could take…however with that said it could have been SO much worse, and it IS so much worse for other children and their parents. I'm not just referring to the death of a child (childhood cancer is the #1 killer by disease of our kids), but I'm talking about the children who relapse again and again and again, fighting this beast for most of their young lives. The kids who need countless, dangerous surgeries in order to stand a chance at survival...the kids who have far more bad days then they have good ones...the survivors who now have life-altering complications such as heart disease, hearing loss, etc. The children who's limbs are sacrificed in the process of saving their lives. Childhood cancer is a monster, and just because our story ended happily doesn't mean that our story reflects all childhood cancer fighters. We were one of the "lucky" ones. Natalie's fight was our hell, but it's done and we're now back to living our lives with a now healthy, normal 8-year-old girl.
We'll never forget August 16, 2012, I'll never forget August 16th period as these cancerversary dates stick in your brain much like a birthday. But even though this day, five years ago, was our family's lowest point, we look at it in a celebratory light because Natalie is here with us today and for that we will forever be grateful.
We'll never forget August 16, 2012, I'll never forget August 16th period as these cancerversary dates stick in your brain much like a birthday. But even though this day, five years ago, was our family's lowest point, we look at it in a celebratory light because Natalie is here with us today and for that we will forever be grateful.
Cancer FREE 8-year-old Natalie Grace today with her big sister Hannah (10). Photograph courtesy of A Guy + A Girl Photography.