‘I don’t want this life. I’m not cut out for this!’ I heard ‘I’m sorry’ on the other end. Adrenaline began, my face got hot. Then the tears started to roll.’: Boy with down syndrome diagnosed with acute lymphoblastic leukemia

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“There are pivotal moments in every life when things will never be the same, moments that change us forever. For many people a positive pregnancy test is one of those moments, and when I saw that flashing test say pregnant I knew life would never be the same. I didn’t know that sixteen weeks later everything would change once more.

A teeny tiny shiny spot on a teeny tiny heart on a gray blobby screen was all it took. The next four weeks were a whirlwind of high-risk ultrasounds, blood tests, and eventually an amnio. I was twenty four and there were no other markers that would make anyone assume anything was ‘wrong’ with my baby. In fact, the high-risk doctor told me to not get tested because insurance didn’t cover the cost, and there was no way anything was wrong. I was too young, the ultrasound looked to clean. But two weeks later I answered a call and the nurse on the other end told me to hold for the doctor. I’ll give you a little spoiler: It’s never good news when you have to hold for the doctor.

Courtesy of Nicole DiGiacomo

I remember it so vividly. I was at work, I could feel adrenaline begin coursing through me, my face got hot, then tears started to roll. The soft droning hold music felt like it was getting louder and louder until an ‘I’m sorry’ was heard on the other end. I remember telling my boss I had to leave and before I could even get a response, I was gone. I screamed, a lot. I’m not one to talk to God but I found myself begging him to make it not true. I spent the rest of the day Googling the accuracy of those blood tests, what the odds of a false positive were, and crying. The next day a large needle was being put into my belly right next to my unborn child to confirm he was going to have a little something extra. Twenty weeks into my pregnancy, it was confirmed that my Oliver would have Down syndrome.

At that point in my life, I had a very naïve and ignorant idea of what Down syndrome was. I had never even met somebody with Down syndrome, I only knew small myths and loose facts. I was terrified of what my future looked like. After confirmation of a 47th chromosome, we met with a geneticist. The very first thing out of her mouth was the location of the nearest abortion clinic that we could go to this far along. I’m very pro-choice, but in that moment I felt so angry she was even offering such a thing. Parents don’t need an out, they need knowledge. I cut her off immediately. There was never a question of what to do with the life growing inside me, only the question of where do we go from here. She handed me a stack of books to read that did nothing but increase every fear I had. Those books should be banned from the hands of parents like me. They did nothing but scare me, and five years in I can say that almost none of the things in those books has come to fruition.

I’m not embarrassed to say I grieved. I truly believe it is part of the process when you get news like that. I’m not ashamed to say I sat on my bed, once again crying, exclaiming that I didn’t want this life, that I wasn’t cut out to be a special needs parent. I can’t help but chuckle at those words now. No one is ever ready for that, no one really wants this life for themselves or their child when they first find something like this out. When you are in the dark you cannot see the light this special needs world brings.

Courtesy of Nicole DiGiacomo

This life has tested me in ways I’ve been prepared for, and ways I have never expected. I’ve been broken to my very core and lifted up to the highest heights. I’ve been pushed past my breaking point and learned to pick up the pieces on my own. I wouldn’t trade this world for anything, and I wish I could tell my past self that. I wish I could tell her that the things she was so worried about aren’t even on her radar anymore. I wish I could tell her that the woman she will become is strong and brave and passionate. I wish I could hold her and tell her that her son will be the sun and the moon and the stars combined. He will not only change her but so many around him. He will touch the hearts of those near and far, all across the world. He will move mountains as will she.

I wish I could say I had a wonderful pregnancy, but the truth is, a high-risk pregnancy is full of stress and worry, research and unknowns. The closer we got to meeting Oliver the more doctors appointments and ultrasounds we had. By thirty weeks, I was getting bi-weekly ultrasounds and by week thirty seven I was informed his placenta was dying. This fragile little being inside of me, that I love so dearly, was at risk of death every single day. They made me hold on four more days while getting daily fetal monitoring, and finally, on the tenth of December they started to induce. I was exhausted and ready to just meet my son, little did I know he wouldn’t show up for two more days.

His birth was a whirlwind. We had what felt like twenty people in the room, which is oh so lovely when all your bits are turning inside out to deliver this precious bundle of joy. At 12:03 a.m., on December 12th 2014, Oliver Wendell Miley was born. Eight pounds two ounces, nineteen inches long. He was perfect. A brief twelve-hour NICU stay and five days under a bili light and I was able to take this little fragile human home.

Courtesy of Nicole DiGiacomo

Four and a half years passed in the blink of an eye. That tiny little baby in the NICU had become a full blown ‘threenager’ who tested me, cracked me up, and molded me into the mother I am now. I’d learned so much over the last four and a half years. I was navigating the waters of special needs parenting like a pro. I was prepared at all IEP meetings, I was advocating for him left and right, and was enjoying our normal run of the mill life. Then March of 2019 happened.

Courtesy of Nicole DiGiacomo

Oliver was on vacation with his father and I got a phone call. He had stopped walking. We chalked it up to the fact that he wears SMO braces. They had been walking everywhere and he must’ve been sore. But weeks go by, he’s home now, and he’s still not walking. I decided to take him to the ER because something just wasn’t right. Now, his lymph nodes were swollen and he just seemed off. The doctor we saw said it was a virus and sore ankles and after a negative strep and RSV/FLU test sent us on our way.

Another week goes by and I take him to his pediatrician, I’m worried the ER doctor missed something. I can see it in her eyes that she is trying to stay calm for me but something is there. Deep down, she knows something I don’t. She sends us back to the ER with STAT testing and once again there is a pivotal turn in the road. April 11th 2019 will be forever burned in my brain as the scariest day of my life. Within just a few hours we are being rushed to a children’s hospital in Chicago, Oliver’s white blood cell count is 50,000, ten times the norm. We don’t have an official diagnosis yet, but we all know it. He has cancer.

Courtesy of Nicole DiGiacomo

The first stay in the hospital lasted twenty six days. A few days in, Oliver is diagnosed with Acute Lymphoblastic Leukemia, the most common of blood cancers. His survival rate is high but it comes with long-lasting side effects, potential relapse, and a possibility his chemo could kill him if the cancer doesn’t. I’m not sure what happened to me those first twenty six days, but this wasn’t going to be like my pregnancy. This wasn’t going to be a pity party. I wasn’t going to just sit here and watch medical professionals poke and prod and administer meds. This time, I wouldn’t grieve. I was going to learn everything I possibly could and do as much as I could on my own, for my son.

Courtesy of Nicole DiGiacomo

I learned to administer chemo through his PICC line, then his port. I learned how to de-access his port, silence alarms, fix kinks and clogs in his lines, I learned what every single medicine was, how much, what it did, the side effects. Calendars became my new best friends. Laundry lists of plans, dosages, and tests became the every day norm. On the last day of our first inpatient stay he started to lose his hair. I thought I would cry, I thought it would destroy me, but instead we decided to shave the rest before it started falling out everywhere. Lucky for us, he has the most adorable shaped head!

Courtesy of Nicole DiGiacomo
Courtesy of Nicole DiGiacomo

Fifty five days after diagnosis, Oliver took his first steps, again. Life felt almost normal, if you took away the daily chemo, weekly blood draws, and constant doctors appointments. Then, our first neutropenia case struck. Oliver had no immune system due to his chemo and back to the hospital we went. Twenty two days we were trapped like prisoners. He wasn’t sick, he felt fine, but we couldn’t leave. Every day was a struggle to keep him entertained, quarantined to our room, only interacting with other humans at rounds and vital checks, we were both going insane. But just like all the other stays we have endured since April, this one didn’t last forever and we eventually got to go home. Every time I feel like we are getting back to normal, I see the light at the end of the tunnel, there is another damn twist in the road.

As I type this, we are on the back end of the hardest inpatient stay we have had yet. Today is day thirteen and we just graduated from our first ever PICU stay. A simple fever from the common cold turned into positive bacterial blood cultures, respiratory failure, congenital heart failure, and one scared mama. An allergy to morphine kept us up for forty eight hours straight then made him sleep for three days once it was removed. For a week I spent every waking moment with my Oliver, but he wasn’t really there. He hadn’t eaten in three weeks, he hasn’t walked in just as long. We’ve been through four antibiotics, one anti fungal, IV nutrition, ativan, and our savior, ketamine. His mouth, throat, and stomach are coated in sores, a side effect of your marrow not doing its job. He hasn’t seen anything but the four walls of our room in weeks.

Courtesy of Nicole DiGiacomo

But today he smiled, today he laughed, today he ate. The biggest lesson I have learned through all of this, from that first sixteen week ultrasound, to this most recent hospital stay is that absolutely nothing in this life is permanent. We have concurred so much together. I have watched this boy fight every single day of his life to try and play catch up to his typical peers, but I’m not worried about that. I know he will do all things in his own time. It took him eighteen months to hold a bottle, two and a half years to walk, and we are still working on talking. But my boy, my Oliver, has defeated cancer. During this stay we have moved into maintenance, we are in remission, he has once again beaten the odds. As I type this he is wide-eyed, flushed skin, watching Trolls. I don’t know what the next turn in the road will be, but with him by my side, I am ready for anything.”

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Courtesy of Nicole DiGiacomo
Courtesy of Nicole DiGiacomo

This story was submitted to Love What Matters by Nicole DiGiacomo of Cedar Lake, Indiana. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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