“Have you ever had a date that feels permanently etched into your mind, whether it be because of a joyous celebration, or a traumatic moment that changes your life as you know it?
November 14, 2017, is the date I will forever have etched in my mind, it was the day my and my family’s life changed forever.
November 12, I had just loaded up both children in the car to begin heading to meet my brother and sister-in-law at their church. We were 2 hours away from home visiting them after they had tragically lost their son, my nephew, just two weeks prior. We had just left my parent’s house when Milo began projectile vomiting in the backseat of my car. It being November, I figured it was the flu. After calling my husband, who had stayed behind in Charleston, we decided it would be best to head to an urgent care facility and have him tested.
I dropped my daughter back off at my parent’s house and decided to give Milo a bath to clean him off before taking him to the doctor. I remember arriving at the urgent care facility, just Milo and myself. I remember the conversation I had with the front desk employee stating I was certain he had the flu but we wanted to get him checked by a doctor and a flu test completed. We waited in the lobby until we were called back, Milo clinging to me looking exhausted and clearly not well. We got to a room and they agreed he didn’t look great. They wanted to start an IV should he need fluids and so they could draw blood for labs. This would be the first of many times I would be required to restrain my son while strangers plunged a needle into his untouched skin. I vividly remember the look in my 2-year-old’s eyes as I restrained him, him screaming, ‘Mommy, no!’ Words cannot properly convey the emotions that rushed over me at that moment.
The nurses left but returned shortly, stating something was wrong with his labs and they needed to draw them again. After waiting about an hour, the Nurse Practitioner walked in and explained they had an ambulance on the way to take us to the Children’s Hospital. The next few hours were a blur. I remember loading Milo onto the stretcher and getting in the ambulance with him, I remember calling my husband in hysterics telling him he needed to get to us as quickly as possible – something was wrong with Milo. I remember getting to the children’s hospital and a team of doctors meeting us in his ICU room. I remember hearing our child needed multiple blood transfusions to save his life. I remember the doctors going over the risks involved with blood product transfusions but also being told it was needed to save his life. I remember signing the consent form while hysterically crying, so confused as to why this was even happening.
The next morning, my husband went to take a shower and not even 5 minutes later, a team of doctors walked into our hospital room. They introduced themselves as the oncology team and in that moment I knew – I knew what they were about to tell me. As the words came out of their mouths, ‘We believe Milo has cancer, and we are confident it is leukemia,’ I felt myself collapse into a heap on the floor. My body felt numb and from that moment, the days that followed seemed to blur by as well.
We were transported to MUSC in Charleston, where we live, and the next day, received confirmation Milo did, in fact, have leukemia. B-cell Acute Lymphoblastic Leukemia, to be exact. We were taken into a conference room and sat at a table with his oncologist and the fellow, where they laid out what his first phase of treatment would look like. I do not remember much about that meeting. My mind was racing and there was so much information it was just impossible to comprehend everything. I do, however, specifically remember them saying he would undergo treatment for 3 years. 3 YEARS! Why so long? How could my baby have to do chemo for 3 years? I felt helpless. The next day, he was taken to surgery to have a port surgically place, then immediately received his first doses of chemotherapy.
The treatment children endure while fighting cancer is brutal. We were given the risks and side effects of each chemo he had to have. Let me tell you, the list was extensive and very unsettling. Knowing we were consenting to these medications, these poisons, was upsetting but we knew, at the end of the day, without these treatments, we would lose our son. We did what any parent would do. We fought alongside our child and watched helplessly as he suffered through multiple complications and countless hospital admissions. We watched as our once healthy 2-year-old lost his childhood and had it replaced with unfamiliar faces, procedures, doctor appointments, sleepovers in hospital beds, and the inability to go or do anything for the fear of infection.
The first year was tough. We had to adjust to a new normal, one that consisted of frequent temperature checks, dozens of home medications on top of infusions of his chemo at the clinic. During the first month, Milo lost his ability to walk due to the chemo and high dose steroids he had to take. It was painful as parents to watch our one active toddler refuse to even bear weight on his legs because of the pain he experienced. At the end of the first month of treatment, we received the news Milo was IN REMISSION! We were over the moon but were reminded just because he was in remission didn’t mean we stopped treatment. He still needed the full 3 years because of the type of cancer he had. Leukemia can hide in the body and once in remission, if treatment is stopped, can come out of hiding and proliferate at an exponential rate. Therefore, the goal is remission within the first month and then continue to hit their body with chemo for YEARS in order to eliminate any traces of cancer that have gone into hiding.
We watched as Milo fought, and have witnessed things no parent should have to. We watched as our son’s hair fell out, all over his hospital pillow. We watched as he screamed in pain because the mouth sores were so bad if he opened his lips at all, the scabs would rip off and bleed. We watched him connected to a morphine pump for weeks, unable to eat or drink anything, hooked up to TPN, which was the only thing sustaining his fragile body. We watched as time and time again he encountered these types of obstacles numerous times over 3 years. We watched as each time he would bounce back and show us a strength that inspired even strangers who began following his journey.
As a parent you want to do any and everything to protect them, to make them feel safe, to make them better. When faced with cancer, having to battle for their life – you as a parent can often feel like you’ve let them down. One thing Milo’s oncologist told us at the beginning that has stuck with me is to remember this WAS NOT our fault. There was nothing we could have done to prevent this and to never place that burden on ourselves. It is easier said than done, but I think it is important to remind yourself.
At the beginning of his cancer journey, we were fortunate enough to be able to participate in the Beads of Courage program where children facing chronic or life-threatening conditions accumulate beads based on everything they go through. I have done my best to keep up with these tally’s and have listed just a snapshot of what Milo has been through below:
– He received roughly 1022 doses of chemotherapy (orally, intravenously, and intrathecally)
– He was poked roughly 201 times
– He received roughly 155 IV infusions of some sort
– He was in isolation at the hospital for roughly 177 days
– He had roughly 32 lumbar punctures
– He was unable to eat for procedures or surgeries roughly 40 times
– He was put to sleep roughly 36 times
– He spent over 112 nights in the hospital
– He received roughly 21 blood products
– He underwent roughly 34 diagnostic tests (CT, MRI, X-ray, etc.)
– He visited the clinic roughly 137 times
– He had roughly 36 unplanned emergency room visits
All of this before the age of 5 and a half!
Take a second and think about everything listed above, think about being a 2-year-old going through these things until you were 5-years-old and not knowing WHY. Think about being 5 years old and only knowing what life is like with cancer. Milo knew nothing but cancer, hospital stays, pokes, medicines, and isolation. He has a drawer in his room with hospital gowns, stethoscopes, and blood pressure cuffs he’s collected over the years he would play with because they were ‘normal’ to him. At 5-years-old, he is able to efficiently operate a machine that takes patient vital signs, his nurses and doctors are his best friends, and he can take a dozen medications in less than 30 seconds flat.
This isn’t the childhood I imagined for my son or our family, but what I have learned throughout this entire journey is to be thankful. It is hard to be thankful when you are holding a bag up to your child’s face for the fifth time that day as they get sick from their treatment. It’s hard to be thankful when your child is screaming in pain, the morphine pump barely taking the edge off. It’s hard to be thankful when you’re cleaning up the last bit of hair they had left that just fell out while they were sleeping, so as not to let them see it when they wake up for fear it would upset them. It’s hard to be thankful when you see posts about other children playing, going to school, living life while your child is in a hospital bed connected to countless tubes receiving chemo, antibiotics, total nutrition through their lines, and on a PCA morphine pump.
Trust me, I understand the moments in life that being thankful feels long forgotten. Despite all of these struggles, I did my best to remind myself he is still here. I reminded myself as unfair as it felt, I could only imagine the pain parents’ who have walked this journey before me, only to walk away with empty arms – the unfairness they felt. The truth is this entire journey is unfair and nobody comes through this completely unscathed.
While November 14, 2017, will forever be a part of our story, a memory forever etched into my memory we now have another date, one that will not replace the haunting memory of diagnosis day but remind me that despite our struggles we were fortunate to have watched our son finish cancer treatment and hopefully go on to live the rest of his life. September 24, 2020, was the day we received the news Milo was officially finished with treatment, that’s right – NO MORE CHEMO! We were over the moon and rejoiced in the amazing news. Despite him being through with treatment, we held off completely celebrating this major accomplishment until he had few months of clear blood work. January 30, 2021, our warrior rang his bell. After 1045 days of fighting cancer, he rang the bell signifying his monumental accomplishment. Surrounded by family and friends, some old and some new, we watched as Milo enjoyed HIS day, the day meant to be a new beginning for him.
We cannot wait to watch as he thrives, and goes on to change the world someday.
For those of you currently in the trenches, battling minute by minute, hold on to the hope and know you do not have to fight this battle alone. As unfortunate as it may be to be in the childhood cancer community, we are all in this together: those that have walked this path before you, those currently walking beside you, and those who have yet to start. Know you are seen, loved, and supported through it all.”
This story was submitted to Love What Matters by Marisa Sligh. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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