October
is a very special month in the Hansen household. We celebrate Down syndrome
awareness month and breast cancer awareness month. It’s a
time for us to reflect on the past, look forward to the future, and celebrate
LIFE! One year ago, I was bald and my newborn baby was living in a plastic
dome. I didn’t believe in miracles. I thought God hated me. Wow, have things
changed...
I had
always wanted a third baby, desperately. I already had two healthy, wonderful
boys but I always felt like something was missing. As I approached 40, my
husband, Courtney, and I decided it was time to try for that third baby. After
two miscarriages and lots of heartache, we were finally able to get pregnant
via IUI on December 31, 2016. We were over the moon.
Because
of my age (39), I had to see a high risk doctor and have extra testing done.
Around 14 weeks pregnant, I had a blood test (NIPT) for further screening. No
biggie. My 12 week scan was completely normal. So of course I was taken aback
when the geneticist called me at work with the results. The first thing out of
her mouth was “unfortunately”....that word and the way she said it will never
leave my memory. Her voice was shaky and she was speaking very slowly.
“Un-forrrrr-tunate-lyyyy,” she said, “there’s a chance your baby has Down
syndrome.” Silence. How do you even respond to that? The geneticist explained
to me that my test results were odd because they showed the baby had a 51%
chance of having Down syndrome, not the 99% result they usually see on this
test. I felt like I was dreaming. I knew Down syndrome wouldn’t change my love
for my child. My best friend has a special needs child who I adore so I was
open to the idea. But there was something about the way the geneticist
delivered the diagnosis that didn’t sit well with me. Like it was something I
should be sad about. My only response was, “So is it a boy or a girl?” And it
was a girl! My heart was happy again. Pigtails and dresses and dancing and
laughing. The future was bright.
I opted
for an amniocentesis, which I know is controversial. But I wanted to make sure
I had a good diagnosis so I could plan accordingly and find the best care. When
the doctor was about to perform the procedure, he noticed something wrong with
the baby’s heart. He said, “This baby likely has Down syndrome. She has a heart
defect called AV Canal, which is common with these babies, and will require
heart surgery in the first year.” What?? I went completely numb. I knew I had
to stay still for the procedure so I just completely zoned out and focused on
the ceiling tiles. Courtney was silent too. When the doctor was finished,
Courtney had to go back to work and he left in a daze. I got into my own car
and completely fell apart. I called my best friend and screamed and cried. I
was angry. I was devastated. I was mourning the healthy child I was supposed to
have. I went into panic mode for a good 24 hours.
Two
days later, the amnio results came back positive for Down syndrome and no other
disorders. I breathed a sigh of relief. I had come to terms with the Down
syndrome diagnosis and even the heart issue at that point. I found loads of
information and support groups online. I started to feel really good about
being a special needs mom, like maybe this was my purpose in my life. I hosted
a gender reveal party and the boys got their wish of a baby sister.
At
about 28 weeks pregnant, things started to change. The baby wasn’t growing as
much as she should have been due to the umbilical cord starting to deteriorate.
I found an OB at Johns Hopkins who specializes in babies with heart conditions
and she kept me closely monitored in the following weeks. At 33 weeks, a scan
revealed the umbilical cord was in really bad shape. I was whisked away to
Labor and Delivery to be monitored around the clock. I was in shock. We hadn’t
even picked out a name yet! We were scrambling to get grandparents and
neighbors over to watch the boys. It was craziness.
Two
days later, on August 6, 2017, Miss Skylar Renee was born via emergency
c-section. I didn’t hear her crying at first and I wept and wept. I could hear
people rushing around and I was terrified something horrible had happened. Then
I heard it. The tiniest little kitten cry that made my heart explode into
a million pieces. She was okay! The NICU team rushed her out of the operating
room so I didn’t get to see her in person but a nurse kindly took a picture
with my phone. I could not believe how beautiful she was. Wow. A stunning
little 3 lb 14 oz baby girl.
I was
in the recovery room for a few hours before the nurses finally wheeled me in my
hospital bed to the NICU so I could see Skylar. It wasn’t the beautiful moment
you picture in your head, where you’re holding your baby for the first time
while staring lovingly into her eyes. Nope. Skylar was in an isolette (or
incubator, as I liked to call it) and hooked up to what seemed like hundreds of
wires coming out of her arms, legs, belly button and mouth. Thank God I was on
a lot of drugs because I may have lost my mind otherwise. I looked at her
behind the plastic wall of her isolette, felt like I was in a bad dream, and
asked to be wheeled back to my room. It was all too much.
It took
me several days to really absorb what happened. One week prior I was working my
corporate job and being Mom to my boys. Now I was in a hospital gown,
unshowered for days, and staring at my baby through a plastic wall. More drugs
please! It wasn’t until day 5 that I was able to hold Skylar for a significant
amount of time. I remember the nurse asking me if I wanted to hold Skylar “skin
to skin.” Yes Yes Yes!!! When the nurse placed her on my chest, I felt so
utterly happy and content. I wanted to stay there forever.
I
settled into a little routine with the NICU. I treated it like a job. I would
drop the boys off at school in the morning, “clock in” at the NICU around 10am
and “clock out” around 6pm, just in time to tuck the boys into bed. We live
over an hour from Hopkins so it wasn’t easy but I was hopeful Skylar would be
discharged by September (wishful thinking!). I was so immersed in the NICU life
that I kept having to remind myself of an ultrasound appointment I scheduled
for the week after Skylar was born. It felt like such a nuisance to go to this
appointment. I almost just canceled it. But I had a strange and large lump
below my left breast, right at the bra line, and I knew I should probably get
it checked out. It was a 1/2 mile walk to the radiology department from the
NICU and I was still recovering from a c-section, but I rallied and made the
trek.
Right away the ultrasound technician was concerned by the images. She called in a doctor who identified another mass in a lymph node. Then they called in Dr. Khouri, a well known radiologist. He looked at the images and put his hands on my shoulders and said, “I am really concerned by what I’m seeing. I need to biopsy you and I have no appointments today but I’m going to squeeze you in.” I felt like I was in a dream. I floated downstairs to the lobby and called Courtney and my two best friends. I cried and they all reassured me it would be ok...but I just knew it wouldn’t be.
I had the biopsy and it was thankfully painless. Two days later, Dr. Khouri called me early in the morning from his car and I already knew what he was going to say. “I’m so sorry, Mrs. Hansen. You have a malignant tumor in your breast.” He called a few days later to let me know the lymph node tumor was malignant as well. What. The. F. In a matter of two weeks, I delivered a premature baby who was being kept alive by machines and now I have cancer in two places. Really, God? Why do you hate me?
The
week after my diagnosis, I met with my new cancer team - oncologist, surgeon
and bunch of other people I don’t remember. It was so weird. They’re talking
survival rates based on different treatment plans and I’m like - just give me
the best one and let me get back to my baby. Turns out I had Stage 2 triple
positive breast cancer, which only about 10% of breast cancer patients have.
It’s aggressive but the survival rates are very high when caught early, like in
my case. I was told I would have chemo first (that was a shocker - I’m going to
lose my hair in a few weeks??), then a mastectomy and lymph node removal,
then…I honestly don’t even remember. All I heard was “chemo” and I about
fainted. Chemo is for sick people and I don’t feel sick! I’m only 39! My first
chemo was scheduled for September 1st. I would have it 6 times, once every
three weeks.
I went
to the NICU immediately after my oncology appointments and I was so distraught.
I knew I had to tell the nurses I had cancer but I felt ashamed for some
reason. I always felt that way when delivering the cancer news. It almost felt
like I was making up a lie, like maybe I was making it up for sympathy. I know
that sounds crazy but the story IS so crazy that it never felt real to me. I
told Skylar’s nurse I could no longer pump breast milk and when she asked me
why, I broke down in an ocean of tears. “I have breast cancer.” It was the
first time I said it out loud. The nurse told me about Mia, a nurse across the
hall, who was recovering from breast cancer. She had Mia come over and talk me
through everything. It turns out Mia also had triple positive breast cancer and
the same oncologist! She was only 18 months ahead of me in treatment. She sat
down with me for a long time and walked me through every step and what to
expect. Talk about divine intervention. (Okay, God, maybe you like me a little
bit.)
Courtney
and I had to tell the boys about the cancer. I researched how to break the news
but in the end, we just spoke from our hearts. We told them I had cancer, but
not the kind that people die from (at least we hoped), and that we would try to
keep their lives as normal as possible. We told them I would lose my hair and
that was the only part they seemed concerned about. They were so little, only 6
and 8 years old, and the only part they really understood was hair loss. We
tried to make a fun family activity out of shaving my head.
Skylar
was almost a month old and sadly not doing well in the NICU. Her heart
condition was worsening and she was going into heart failure. Her cardiology
team decided she needed a procedure done as soon as she reached 5.5 lbs. She
finally made it to that weight in early September and heart surgery was planned
for September 15th. The surgeon, Dr. Vricella, was so kind to schedule the
surgery when I was recovered from my first chemo and well enough to be there.
On
September 15th, Skylar had a procedure done to place a band around her
pulmonary artery. This would help control the flow of blood into her lungs and
help with breathing and overall heart function. While it wasn’t open heart
surgery, it still required opening up her chest. She was so tiny and frail.
There are no words to describe saying goodbye to your 5.5 lb baby as she’s
rolled off into heart surgery. I’m crying as I write this. I didn’t know if she
would be okay. I just prayed and cried and prayed some more.
The
surgery took so long. The waiting was the absolute worst. When Dr. Vricella
finished surgery, he came out into the waiting room and he looked exhausted.
Skylar did well but the surgery was very challenging. Dr. Vricella said her
heart was the size of a cherry! He had to place a tiny Gore-Tex band around an
itty bitty artery. But he did it and she was recovering in the PCICU (Pediatric
Cardiology ICU).
When I
walked into the PCICU to see Skylar, I couldn’t believe my eyes. All the wires
on this tiny being. It took my breath away. Courtney cried. I could barely look
at her. We stayed in the room with Skylar as much as we could the next couple
of days but we felt helpless. She was very sedated but whenever she heard my
voice, she would struggle to open her eyes and it was painful. So I had to stay
quiet and just watch her from afar. It was torture. She was extubated on day 2
but struggled to breathe. I watched them “bag” (resuscitate) her twice. I felt
like someone was stabbing me in the heart over and over.
Skylar
stayed in the PCICU for almost two weeks to get her breathing and medications
under control. During this time, I had my second chemo and both of my tumors
were already melting away. The chemo was working. At least something was
looking up for us.
By the
time Skylar left the PCICU and went back to the NICU, she seemed like a new
baby to me. I remember her looking around the room, wide-eyed, as if she was
seeing the world for the first time. Heart failure had made her so sleepy all
the time. This heart procedure pumped new life into her.
Skylar’s
recovery was slow and steady. She had trouble gaining weight, she couldn’t
breathe without oxygen, and she still needed lots of heart medication. Two
months went by and I felt like our NICU days would never end. It was exhausting
and I was becoming weaker with every chemo. But I was determined to give Skylar
as normal a life as possible. She needed her mom. She needed to be sang to and
read to. I looked into her eyes every day I was there and talked to her for as
long as she could stay awake. Even though she was so small, I think she
understood me. She knew I needed her just as much as she needed me. Some days
she would struggle to stay awake just to hear my voice.
Those
days are very dark for me. I look back on this time a I don’t even see myself.
I see a shell of a woman going through the motions like a robot. You have no
choice at that point. You go into survival mode. I never knew what time of day
it was in the NICU. It was always so dark and quiet. I used to joke that it was
like being in a Las Vegas casino - you never know how long you’ve been sitting
at the blackjack table (or rocking a baby).
I
started to get frustrated with the doctors because I never got straight answers
from them. And sometimes they would contradict each other. Thank God for the
nurses who were always willing to push for answers on my behalf. I was too weak
to argue. My only defense was crying. That’s how I ended up getting Skylar out
of there - after 100 days, I pulled the attending doctor aside and cried my
eyes out. I begged him to let us bring her home and I promised to learn how to
use the medical equipment at home. And who can argue with a bald, crying cancer
patient? Skylar was transferred out of the NICU to the pediatric floor just
before Thanksgiving and we were almost home.
On
December 1, 2017, Skylar Renee finally came home after 117 days in the
hospital. All of us - Courtney, Oden, Lucas and I - drove up to Baltimore with
my mom to bring Skylar home. It felt like Christmas Day. Skylar was finally
going to see sunlight and her beautiful nursery. I would get to hold her all
day in the comfort of our home. Our boys would finally feel like we were a
family of five.
It was
completely surreal putting Skylar in her car seat and driving away. I almost
felt like we were stealing a baby from the hospital. As we walked Skylar out to
the car, she had to shut her eyes from the bright sky. At 4 months old, she had
never seen the sky or breathed outside air. I remember being nervous as we
drove home and checking to make sure she was breathing. As we drove over the
Chesapeake Bay Bridge, we all said, “Skylar, you’re almost home!”
What I
wasn’t prepared for with Skylar’s homecoming was all of the “machines.” There
was an oxygen machine and a feeding pump for her feeding tube. There was a home
monitor that would beep at night and scare me to death. Skylar was a very easy
baby, except for all the medical equipment. I felt like I was in nursing boot
camp trying to juggle it all. But we got through it. Just seeing her smiling
face and her loving brothers’ smiling faces made everything worth it. Our big
medical goal at that point was to get Skylar to 10 lbs so she could have her
heart repair surgery in 2018.
Christmas
was a blur and then I had my final chemo treatment on December 28, 2017. It was
so special for me to have my final treatment at the end of the year. I went
into the New Year knowing the worst part was over for me. My parents took me to
that treatment and we rang the victory bell. It was unbelievably emotional. I
came straight home and held Skylar and cried for hours.
Three
weeks after chemo ended, I had surgery to remove both of my breasts and several
lymph nodes. I bounced back fairly quickly but not quickly enough. Skylar was
hospitalized one week after my surgery and I was determined to be with her. She
was having mystery fevers and her oxygen saturation levels were dropping, all
due to her heart condition. She was in the hospital for a few nights and I
stayed with her. I had these horrible drains coming out of my breasts that I
had to take care of in the hospital bathroom. Gross. And I picked Skylar up a
lot, which was a huge no-no from my surgeon. But Skylar always came first.
Cancer was just such a nuisance to me. I was still going to the infusion center
every three weeks to get targeted drugs and I never wanted to be away from her.
It killed me to leave her.
Due to
Skylar’s increasing heart issues, we decided to move up her heart surgery.
She was not quite 10 lbs but she was close enough. We scheduled the
surgery for February 15th. I liked that she was having surgery one day after
Valentine’s Day (heart day). Courtney and I decided to take Skylar to a fancy
dinner on Valentine’s night and we stayed in a hotel near the hospital.
I’ve
never felt panic like I did the day of Skylar’s heart repair. I almost passed
out several times while the nurses prepared her for surgery. I didn’t know if I
would be able to make it through the day. We said goodbye to Skylar around 9am
and a nurse called me every few hours with updates. Courtney and I left the
hospital for a bit and tried to keep our minds off the surgery but it was so
hard. Every time I’d think about Skylar being cut open, I would go into panic
mode.
The
surgery was done by 4pm and the surgeon, Dr. Vricella, came out to speak with
us shortly after. He said the surgery was difficult (again) because Skylar’s
heart was so small - the size of a newborn’s. But he successfully repaired her
heart and we felt relieved...until he said, “the next 12 hours are critical and
things can change in an instant.” Oh boy. I wasn’t expecting that. The panic
returned.
We went
to the PCICU to see Skylar that evening. Because we’d already seen her after
her first surgery, it wasn’t as shocking the second time. But it will still
upsetting. She was trying to respond to my voice again. I had to stay quiet so
she could get some rest. You feel so helpless in those moments. You want to
stay and hold your baby’s hand but you know it will only delay her recovery. So
you just sit in the back of the room and pray.
We got
past those dreaded first 12 hours and I’ve never felt so relieved. My baby was
doing so well! In fact, she was extubated within 48 hours, which we were
definitely not expecting. She had her chest tubes and other monitoring wires
removed by day 3. She was starting to wake up a bit more and we were able to
talk to her. This is my favorite picture of Courtney and Skylar - he was
singing softly to her and she listened to every word. It perfectly captures the
love they have for each other.
By day
6, Skylar was smiling and kicking her feet AND she was completely off oxygen!
Amazing. And by day 9, Skylar came home. The worst parts of heart disease and
cancer were over! We were all so excited to have her home again. At that time,
home didn’t feel like home unless Skylar was there. We all felt like our lives
were finally beginning again. And just like in the last heart surgery, Skylar
came to life during the first few weeks of recovery. She smiled all the time
and started giggling. Her giggle is hysterical - it’s a bit like an 80-year old
smoker from all the intubation she’s needed. I love that throaty laugh. It
reminds me how awesome our life is now compared to last year. Like a rainbow
after a thunderstorm.
It has
been 8 months since heart surgery and Skylar has grown by leaps and bounds.
Within a month from surgery, she started eating solid foods. A few months
later, she was taking a bottle and no longer using her feeding tube. She can
now roll over, sit up, and is starting to crawl AND she turned ONE on August 6,
2018. What a year. Skylar is my hero. Seeing the world through her eyes has
forever changed me. She is pure joy and happiness. She puts a smile on every
face she meets. She’s magical like that.
As for
me, I had reconstructive surgery over the summer and finished my 12 months of
drug infusions on September 7, 2018. What an emotional day. It was an entire
year of infusions every three weeks. All 5 of us went to the infusion center on
that last day and rang the victory bell. I held it together for a happy family
photo but broke down as we all piled into our car. I held onto Oden, my oldest,
and we cried together. I felt like he suffered the most during the past year
because he understood a bit more what was going on. We held each other until
all of those sad emotions were gone. Then we all went out to lunch and cracked
open a chocolate piñata for dessert. Sometimes chocolate is the best medicine.
I can
finally say I’m a cancer survivor.
After all those treatments and surgeries, I’m finally free. I can move on with
my life and I’m certainly trying to. It’s not easy though. Sometimes you get
stuck in the sadness of the past and it’s hard to move forward. Post-traumatic
stress is a real thing. But I’ve never been one to dwell in my misery. And
Skylar helps me. She keeps me going. She reaches out her chubby little arms for
me to pick her up and I know what my purpose in life is. I was meant to be her
mom. She saved me in more ways than one. She brought me to Johns Hopkins, to
some of the best oncologists in the country. She kept me going on days when I
didn’t think I could fight anymore. She gave me purpose and she kept me alive.
I have more hope than I’ve ever had. I have witnessed so many miracles this
past year that I no longer believe God hates me. Everything that’s happened was
meant to happen. And I’m a better person than I ever imagined I could be. I
wouldn’t change a thing about my journey.
Today,
I celebrate life every single day. I say “I love you” more. I spend more
quality time with my family and we laugh a LOT. We share our emotions, the good
and the bad. Time is precious, you never know how much you have. Be grateful
for the time you have with your loved ones. Look your kids in their eyes and
tell them how special they are and how much they mean to you. Love each other
like Skylar does - with abandon and with your whole heart.
Stacie Hansen is a mother of three children, two boys and a
little girl named Skylar. Skylar was born with Down syndrome. You can follow
Stacie and Miss Skylar on Instagram @SkootieBadoodie
