By: Lauren Murphy
When you’re pregnant with your second baby, doctor appointments become very routine; You’ve done all of this before, so going to a standard appointment was not a second thought for me. That is until my doctor came after my ultrasound and told me that the baby’s nuchal fold had extra fluid, which meant that the baby could have Down Syndrome. I was completely in shock; how is this possible? I have a beautiful, healthy baby boy at home and no history of Down Syndrome in our families.
Following the advice of my doctor, she sent me for testing and told me to educate myself; Talk to other moms who have children with Down Syndrome. Thankfully, I spoke to amazing mothers and I actually had a friend growing up who had Down Syndrome and she was awesome, quick witted and so sarcastic! I threw myself into education and read The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood. Growing up with anxiety, the unknown is a fearful place but when I have the knowledge, I become more confident about whatever the fear may or could be. That book connected me to other amazing DS families via social media, and as I always say: They are the family I didn’t know I needed. However, the book also confirmed the fears I had with having a child with Down Syndrome; Possible congenital heart defects, cognitive and developmental delay, & potential cancer. I threw myself into learning about these possible risk factors so that I would know the signs and symptoms to look for, God forbid it ever happened.
On July 20th, 2017, our amazing little girl was born after Mommy’s epidural didn’t work, keeping Mommy on her toes! Mackenzie was a solid 7lbs 11oz, easily latching, happy baby who spent one night in the NICU for some mild jaundice and a failed car seat test. "Mighty Mack," as we called her since we came home, started early intervention and over time proved to be a strong and mighty little thing.
Fast forward to August 2019, a month after Mackenzie’s 2nd birthday, she started walking up to 7 steps and was doing so well. Mack had very fair skin and would often get heat rash during the summer but whenever I would see it, my mind would jump to these little red dots I read about, petechiae, that can be an indication of cancer. I recalled seeing heat rash on her throughout the summer but it would fade so my mind was at ease; one day my husband and I noticed red dots on her leg. We chalked it up to heat rash and I threw myself into work since I had a business trip coming up to LA. After 2 nights away, I arrived home on a Friday night and had nothing on my mind except snuggling with family and sleeping all day Saturday.
Saturday morning, I was snuggling Mack in bed and watching videos; One in particular was viral at the time. It was Michael Buble’s Forever Now music video, a song he wrote for his son who had cancer. I cried because it was beautiful and sad and because I remembered his son had cancer and the empath in me felt that in that moment, listening to the song. Then something in me remembered those red dots on Mackenzie’s leg; I looked and they were still there. She was asleep and I could feel in my gut something wasn’t right. I told my husband that I wanted to bring her to the doctor, just to make sure.
When we arrived at our doctors office, we actually saw a friend of ours from our Down Syndrome community and her little boy. Mack and her son blew kisses to one another and we went in and waited for the doctor. I told her my concern and she did a quick CBC, complete blood count. When she entered the room, she told me she was concerned and wanted us to go to the ER immediately. She asked what I was worried about and I said, “Everything, I’m afraid my daughter has cancer.”
The drive felt motionless, I called my husband and told him I was stopping quickly outside the house to get a bottle and some food for Mack for the hospital. We both had tears in our eyes but tried not to accept our fear. I told him not to say anything to our son who was 5 at the time. When we got to the hospital, we were escorted to a room where I and two other nurses had to hold Mackenzie down to get blood work from her. Her veins to this day are so hard to find. The blood work had to go through numerous tests which took hours but the doctors were updating me and all signs were pointing toward leukemia. My mind went to dark places in that hospital room when we were alone: "Were there signs I missed She had a nose bleed a week prior and she had bruising on her head but she was learning to walk so she was falling a bit."I felt so utterly helpless. "My happy baby already has been through so much, why now this?!" If ever was the time to stay in the present with my anxiety, that was the moment. I turned on our favorite songs, Ob-La-Di, Ob-La-Da among them, and we danced. I remember thinking, I don’t know how many more times we could dance, so we danced and I held her for 6 hours, until we were admitted upstairs to the Pediatric Oncology unit.
That first night was a blur, I was exhausted and sick with anxiety but Mack and I snuggled in our shared hospital bed while she was hooked up to an IV. The next day, the diagnosis was confirmed and when I asked about treatment and when we could go home, our Nurse Practitioner said, "Uou will stay here for the next 30 days, surgery is scheduled for Tuesday and she will begin treatment Tuesday night." My heart sank! My 2-week work vacation turned into a cancer diagnosis, my husband was starting school again in a week and my 5 year old son was starting kindergarten at a new school. "Oh, and my daughter has cancer. "
I recall sitting in that hospital room feeling like my whole world flipped upside down. I longed to be home with my boys and my daughter, all safe and cancer free. It was still summer and while everyone was enjoying the last licks of sunlight and warm air on their skin, we spent our days in a confined hospital room while Mackenzie had IV fluid, various chemo drugs that I could barely pronounce at the time, platelets and steroids pumping through her veins in her brand new central line she had surgically placed. I cried in waves. My husband took care of our son at home while I stayed full time with our daughter in the hospital.
How could we make life as normal for our babies? We asked family to come watch Mack early in the mornings during the week so I could get up, drive home and bring my son to kindergarten. My husband went to work and I took disability. We needed an income and insurance. I was exhausted, living on fumes, coffee and hospital food. Family and friends reached out often which helped some of the time go by. Mack slept a lot on and off while her body fought this first phase of treatment. The side effects of cancer treatment are hard to watch and complications only cause more worry. From EKGs to MRIs, bone marrow aspirations to spinal taps, neuropathy to countless staph infections and MRSA; we’ve seen them all. Mackenzie stopped walking for a few months and had to learn all over again. The regression that cancer caused crushed me as her mother. She worked so hard since three weeks old to prove her abilities to then have cancer come and like a wind gust, knock her back down.
We spent the better part of 7 months in the hospital for observation during treatment and then for contracting staph infections, which we had to react quickly to as it can become sepsis. Our lives became chaotic and frenzied. It was confusing to my son when we were home for a week or so and then end up back in the hospital. He began showing signs of anxiety at school, crying during class, getting into trouble, obsessively hand-washing to avoid bringing germs home and again; I wasn’t home to fix it. We tried to make life as normal for him as possible, but we were exhausted; our life wasn’t normal anymore.
Our first month in the hospital was the hardest but our nurses were the ones who kept us going everyday. They fell in love with my little girl! I made a promise to try to return that favor of bringing a little happiness to other kids on our floor. Our "Mighty Mack" became "Mayor Mack", giving hugs and blowing kisses to everyone, but especially the men who entered the floor or our room, such a flirt! Being in the presence of these kids who are fighting against their own bodies, all while smiling when you see them is the most gut-wrenchingly sad yet humbling experiences I’ve ever witnessed. It’s true that you don’t know real heroes until you see children fight. It’s a journey I wouldn’t wish on anyone; It’s a club you never want to be part of but yet you are there.
We know 5 kids who have lost their fight from our hospital and even though it’s not my child, it’s a child that is part of our family...our cancer family. I’ve hugged those parents as their child was taken to the OR, our children did arts & crafts together in the craft room which was the closest thing to normal as life could get for them and I’ve cried with them as they were told about relapses or growths. Those losses hit hard because they are kids and kids shouldn’t die, but it’s hard to understand why their child’s fight ended but your child is still here.
I pray that Mackenzie continues on her journey of beating cancer but I don’t think my fear will ever go away. Mack’s treatment ends in November of this year but the amount of work we need to do on the back-end will last years. For now we will keep fighting, help others on their fight and create awareness in the hopes that funding will help research which will result in a cure or even prevention. Our children deserve so much better.
Follow Lauren and Mack's Journey @murphy42012