‘We’re sorry. It’s cancer.’ We’ve spent 150+ nights in the hospital. I quit my job. My husband ran out of sick days.’: Mom’s newborn diagnosed with Leukemia, community sacrifices sick days to help

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“November 29th, 2017 was the best day of our lives. On this day, my husband and I welcomed our daughter, Kinsley Michelle Green, into the world. At this point, I honestly thought the hardest was behind us. Having been in labor over 36 hours and ending up in surgery for an emergency c-section, we thought we had been through the worst.

Courtesy of Megan Green
Courtesy of Megan Green

We were so overjoyed to finally have our baby girl in our arms. 10 fingers, 10 toes, blonde hair, blue eyes, 7 lbs 2 oz, 19.5 inches tall. She was perfect. Kinsley was the best baby. The kind of baby other mothers would be jealous of. She slept great, she ate great, she was always so happy. Until she wasn’t.

Courtesy of Megan Green
Courtesy of Megan Green

Late September of 2018, we noticed a shift in our bubbly little girls’ personality. Something just wasn’t right. Kinsley stopped sleeping through the night. She had a diaper rash that we couldn’t control. She was constantly fussy, and the days seemed like years. My mom instincts were on high alert and over the next 3 weeks we had 1 well visit and 3 sick visits to the pediatrician.

They continually told me it was average baby things, that she was teething, that she was fine, that this was normal. I knew there was nothing normal about it. After the fourth visit, Kinsley got progressively sleepier. She didn’t want to drink her bottles and didn’t want to play. Just a couple days earlier she was playing all day and getting into everything. I didn’t feel at peace with the way our little girl had changed. We felt lost on what to do next, and how to ‘fix it’.

On Monday, October 22nd, I noticed a rash on Kinsley’s legs. I thought, ‘Funny thing. I ALWAYS washed Kinsley’s clothes before letting her wear them.’ ALWAYS. But on this day, Kinsley had gone through so many clothes that I grabbed a onesie that had not been washed. Of course, when I first saw the rash, I blamed myself. However, once again, I decided to call the pediatrician.

Courtesy of Megan Green

It was 4:00pm on a Monday. After speaking to them, they told us to head right in. It was just me and Kinsley. My husband, David, is a high school teacher and football coach, so he was on the practice field. At this time, he didn’t even know we were heading to the pediatrician because he didn’t have his phone. Once Kinsley and I walked through the door, our pediatrician took one look at Kinsley and told us to head to the Emergency Room at Huntsville Hospital.

They told me they feared that she had a blood infection and that we would not have the time to make it to Children’s Hospital in Birmingham. It was a one-and-a-half-hour drive away. So, Kinsley and I jumped in the car and headed to the ER. The fear, the sadness, the heartbreak I was feeling at this moment can’t be properly described in words.

I tried my hardest to hold it together. I managed to get in touch with the wife of one of my husband’s colleagues so he would know we needed him to meet us at the hospital. I thought we would be there without him for a while, that I would have to walk through those ER doors with my 10-month-old baby by myself. But by some miracle David had beaten us there and was waiting to comfort me so we could tackle this together.

They ran every test possible on Kinsley but wouldn’t tell us any results. SIX HOURS later the doctor walked through the doors with two child life specialists by his side and sat us down to have the talk no parent ever wants to have.

Life comes at you fast. On Saturday, October 20th, we were at my sister’s engagement party and by Monday we were in the ER being told, ‘You don’t want to know what I’m thinking’ and ‘We are so sorry, but we believe your daughter has cancer.’ The next hours and, let’s be completely honest, days were a blur.

We took the slowest ambulance ride I’ve ever seen to Birmingham. We were told that there was only room for one of us in the ambulance and that I had to ride up front because there wasn’t room in the back for me to be with Kinsley. This was honestly the longest two hours of my life. My oh-so-sick baby was in the back of the ambulance with strangers while I sat up front, emotional and confused. We finally arrived at Children’s Hospital a little before 3:00am. I had left our house 11 hours earlier with Kinsley thinking it was a simple rash. And now here I was walking into our second ER with my 10-month-old daughter who I was just told had cancer.

Our whole family was there to wait on us and yet somehow, I just walked past all of them. I was no longer crying. I was in a daze. We met with doctor after doctor, they talked to us using terms that at the time I swore were another language. Luckily, my sister Geordan is a nurse and was able to be with us to take notes and translate all of the knowledge being thrown at us.

We were told Kinsley needed multiple blood and platelet transfusions because her levels were dangerously low. At the time, the thought of someone else’s blood being given to our daughter was terrifying. Now, many transfusions later, it is ‘normal’ for us. We eventually made it into a room on the Special Care Unit because Kinsley was not well enough to be on the Oncology Unit just yet. She required constant monitoring. My tiny baby girl was hooked up to so many cords. It is still hard for me to look back on these pictures. It is not always pretty like the smiley bald kids you see in the commercials.

Courtesy of Megan Green
Courtesy of Megan Green

The next morning, we sat down with our oncologist. She was so patient with us and continues to be to this day. She confirmed a diagnosis of Acute Lymphoblastic Leukemia. Because Kinsley was younger than one year old, she required a much more aggressive approach. The next day, our baby girl went into surgery to receive her port, get her first dose of chemo into her spine, and get a Bone Marrow Aspiration to tell us what percent of her marrow was Leukemia. After surgery, Kinsley had a hard time waking up and ended up on oxygen. We found out that Kinsley has a mild heart condition that certain medicines can activate. The days that followed were full of chemo and researching treatment plans and side effects. We didn’t sleep for days on end. One of us would sit up with her beside her bed just to watch her and make sure she was okay. It is honestly hard to put myself back in those days and the emotions that took over us.

Since those first days, a lot has happened. We have spent Kinsley’s first birthday in the hospital. We have spent Thanksgiving, Christmas, New Years, and now Easter in the hospital.

Courtesy of Megan Green

I will spare you all of the medical details and jargon. But to say things have been easy since those few days is far from the truth. On top of the side effects of chemo, she also has developed other complications. Twice now, doctors have walked in the room to tell us of a complication that in some cases could be fatal. Twice God has helped Kinsley defy the odds. Kinsley battled a fungal infection, pneumatosis, fevers, viruses, and mucositis. She has overcome all of these, but because of her compromised immune system from chemo, she runs the risk of new complications coming into play daily.

Kinsley is close to finishing her 3rd round of chemo out of 5. After she completes 5 rounds of inpatient chemotherapy, she will then face 2 years of maintenance chemotherapy. But thankfully we can do the maintenance portion of treatment outpatient and only need to go to the clinic once a week. This means sleeping in our own beds!

After six months in treatment, Kinsley is way too used to being poked and prodded at all hours of the day. She is used to being attached to an IV pole all day. She takes more oral medicines in a day than an elderly person. And that doesn’t even include the ones that go through her port. The fact that all of this is normal to her breaks my heart.

Courtesy of Megan Green

The hospital is now our home. Over the past few months, we have spent way more time there than at home. Her nurses are now my friends, some we have made lifetime connections with. They are our biggest blessings through all of this. They have cried with us and laughed with us. They have shared Kinsley’s milestones with us and celebrated holidays with us. Our nurses are truly heaven sent and we are so thankful to have them walk this path with us. We honestly couldn’t do it without them.

We have spent roughly 150 nights in the hospital, and we have many more to come. During all of this, I have not left Kinsley’s side. I had to quit my job in order to spend every night with her. My husband David has to make the one-and-a-half hour drive from home to the Children’s hospital in order to see his daughter. And that’s just one way.

Not long ago, David ran out of sick days. I created a post on Facebook asking for help. The amount of people who have shared days with us is overwhelming. We are truly so blessed. David will now be able to be with us as much as we need him while still working and coaching and fulfilling that commitment. We will never be able to thank the people who stepped up to make this possible enough.

Courtesy of Megan Green

I do not want pity for what we are facing. Instead, I would love it if you would research more into Childhood Cancer. Support Childhood Cancer fundraisers that you may run across. Buy the $5 bracelet that you see advertised, donate items to your local hospital. Every little bit helps. I know when it isn’t your child it feels so far away, like it could never happen to you. But the day before Kinsley was diagnosed, I was just where you are. I wasn’t the mom of a child fighting cancer either.”

Courtesy of Megan Green

This story was submitted to Love What Matters by Megan Green of Birmingham, Alabama. You can follow her journey on Facebook here and donate hereSubmit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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