Within the first few days of our journey with pediatric cancer, it quickly became clear that I needed to share our story with anyone that would read or listen. It began with Facebook posts on Cooper’s Facebook page. But, God had bigger plans and the push to create a blog became stronger throughout treatment. In listening to God’s nudge, here the story of my nine-year-old’s cancer journey. It’s not short or pretty. And, it’s hard, because cancer is hard. Watching your child fight for his life is hard.
Living in the “Before” of Cancer
It was a freezing day in February and we were at my nine-year-old’s, school basketball game. It was a typical Sunday of the normal running from church, followed by lunch, then on to the weekly basketball games for both Eli and Cooper. At the time, Eli was 11 years old and Cooper was nine.
That day we arrived a little early to watch some of his classmates play their game before Cooper’s game. Cooper was cheering his classmates on, while being goofy with his daddy. There were hollers and hands and all sorts of craziness. Lonny, my husband, was swinging Cooper’s arms around in the air and noticed that his right forearm was thicker than the left forearm.
My husband mentioned it to me, and like most moms with boys, I totally dismissed it, thinking it would probably go away in a few days. Over the next couple of days, we noticed his forearm getting more solid and less squishy. The word “cancer” still remained the last thing it could be, right? Because it’s unfathomable it could be cancer. Fatty tumor, maybe. but not cancer
We were blessed with an incredible pediatrician that got us the next day to check it out. That morning, I kept Cooper home to head to his appointment. I was watching him play basketball outside and noticed him squatting to pick the ball up. No nine year old knows the ergonomic way to pick up a basketball, by bending at the knees.
That moment was when my internal siren went off. Something wasn’t right, if his back was hurting. He was a very athletic child and never complained about pain. When I asked him about it, in typical Cooper fashion, he said it was just a little sore, but it would be fine. (Not sure who the parent was in that situation)
Later in the morning we headed to his doctor’s appointment. His pediatrician took one look at his arm, noticing the tumor was not cyst-like. And it was hard to determine where the edges started and stopped. He ordered an MRI for the next day. Looking back, the look in his eyes still remains with me. One of kindness but also deep concern.
His MRI went well. Cooper showed amazing calmness through the whole thing. That night, our pediatrician, called us. He informed us that the initial diagnosis was Rhabdomyosarcoma and we would be called the next day from Riley Children’s Hospital in Indianapolis, IN to schedule surgery to get a biopsy and a PET scan.
Lonny and I just looked at each other. “Rhabdo, what? How do you even spell that??” Some kind of sarcoma.. we could deal with that, right? Sarcoma being cancer, took a bit to register. That evening, we turned to Google, as everyone does. Google told us a very frightening story with a very bad prognosis.
Did our kid just get diagnosed with cancer?
The Reality of the Journey Started to Form
Google provided a sufficient amount of fear. Sleep did not come that night. My husband and I both tried to focus on work the next day while waiting for a call from Riley Hospital. When the call came, it was from the oncologist’s office. Oncologist. The scary word “cancer” became real in the length of time to hear someone on the phone say, “oncologist’s office”.
I still thought the tumor could be removed with surgery and some recovery. Words like “chemo” and “radiation” where not part of our vocabulary..yet.
The next several days turned dark quickly. Our life had been turned upside down. Looking back there isn’t one word to fully describe the havoc and fear that entered into our life. It’s like our life hit a dead end going 100 mph. Life as we knew it had completely disappeared.
The First Mention of “Chemo”
During his biopsy surgery, the doctor came to speak to us confirming it was Rhabdomyosarcoma and the tumor was too entangled in his muscles to be able to remove it. It would need to be treated with chemo and it would need to be done soon.
I can tell you exactly how to get to that consultation room, what every piece of furniture was in the room, the design on the uncomfortable couch. But, I can’t remember a single word outside of the words “cancer,” “spread,” “chemo,” and “soon,”. It’s all a total blur.
While the biopsy surgery went well, the pain that developed after the nerve block wore off was terrifying..and just the start of what was yet to come. I still remember the screaming and the fear of the pain throughout the night like it was yesterday. The pain in his back had increased as well and he had developed pain in his hips.
During the post op visit, the feeling of complete dread came over me as we were ushered back with the doctor and Cooper was taken to a play area.
The doctors sat quietly on the exam table along with a nurse. A few minutes later, it occurred to me that she was there for support. Even 18 months later, tears are flowing from mentally walking through the moment, because it will haunt me for the rest of my days.
In the kindest words he found possible, the doctor proceeded to give us the results of the PET scan.
The cancer had taken over Cooper’s nine year old body.
It was everywhere.
If you have gone through that moment with yourself or your child or your loved one, you honestly can’t capture the true essence of the feeling. Everything goes blurry and you can’t breathe. You look for a trash can to throw up in and you want to run screaming, but you can’t actually move. You are paralyzed. All time comes to a complete standstill. The doctor continues to speak, but you hear nothing because your ears are ringing.
The doctor informs us that Cooper had tumors in his right forearm (primary site) that had grown from 4 cm to 8 cm in a few days. It had doubled..in days. He also had tumors on his upper flank (back) and on both of his hip bones. There were tumors wrapped around his lower spine, compressing his vertebra. The cancer had spread to his pancreas, liver, and later found out in his bone marrow.
My need to know his ‘chances’, according to the doctors, was overwhelming.
As a mom, you instantly feel you need to know the chances. I thought I needed to know what we were dealing with from a clinical standpoint. I can’t remember any other words, other than “possibly 10% chance of a year, maybe a little longer” and “we will do what we can.” My heart was shattered. Looking back, I know God was right there beside us in that little exam room and He was holding on to us. But in the moment, everything, including God, felt a million miles away.
Now, I see how God orchestrated every single move we made for us to find the tumor when we did. He ensured we had a pediatrician who responded so quickly. He led us to the places that we needed to be in order to get Cooper into treatment.
In the days following, it became evident Christ had intervened for years leading up to this journey. He had been guiding us to where Cooper is now that guided us to where Cooper is now.
10% chance of a year.
Cooper’s first oncologist about his survival
It was a quiet, dark long hour drive home that night. My husband sat with my son in the back seat while I drove. No radio. No discussion. It was a clear night and the stars were bright and beautiful. All I could hear was the sound of the tires on the road. My mind was screaming. My heart was shattered. The tears flowed freely all the way home.
I begged God to let this be a bad dream or let the doctors all be wrong. But then, in response, in the quiet, in the dark, a feeling of peace came over me. The words, “It will be okay. Depend on ME. Watch what I WILL do.” surrounded me like a warm blanket. The words were placed in my heart and in my mind. It was a moment that I will never forget because it was God letting me know He had this. It became a grounding moment for me and will be for the rest of my life. When fear takes over, which it OFTEN does, I try to retreat back to that moment and feel His presence.
It will be okay. Depend on ME! Watch what I will do. ~GOD
In the first several days, weeks, months of the diagnosis, the emotions range the whole spectrum. And every emotion was incredibly intense. To say it was an emotional roller coaster doesn’t even begin to describe it. The intensity was so great, I felt like I was loosing it. Anger, fear, thankfulness, happiness, sadness, x1000. This is where I feel my faith was truly tested. I didn’t know what true faith was until we were unwillingly thrown into this cancer journey.
Cooper didn’t deserve this. He was playing basketball the week before and now he was riddled with pain as the cancer was taking over and so very quickly. Without starting treatment quickly, our time fame was probably several weeks, maybe a few months with as fast as it was spreading. Fear was such a big part of this journey, which is why I needed that moment in the car with God telling me it was going to be okay. And even then, it was hard to believe. Nothing felt okay.
Looking for Hope
Prior to the PET scan, we had started to chat about what our options consisted of. And you know how I mentioned that God had orchestrated so many moments with such a big purpose in? And this was no different.
God’s Connections
The day before Cooper’s PET scan, my husband received a call from a guy he went to school with. They hadn’t spoken in 20+ years. He proceeded to tell us while he was in church that morning, one of Cooper’s teachers added him to the prayer request and we didn’t know the prognosis yet, but it didn’t seem great. He called Lonny shortly there after and told us about the cancer journey his daughter had been on several years before. She is Cooper’s age and a survivor. She was a patient at St. Jude Children’s Research Hospital and they saved her life and we should prayerfully consider looking into treatment there.
We immediately went to their website and began researching and found a clinical trial for Rhabdomyosarcoma, RMS13. Although we didn’t know it yet, but Cooper was considered the highest risk. We contacted their solid tumor coordinator. Joe responded to us within an hour. By the end of the call, he informed us that Cooper most certainly met the requirements of the clinical trial and we had an appointment the following week.
The few days following were honestly a blur. A major life changing decision and a constant 1:1 with God, pleading for this story to be different. Let it all be a terrible dream. Even with the fear that permeated every ounce of me and being surrounded with constant prayer, it was hard feel God’s presence. Everything seemed to move in fast forward and in slow motion all at the same time. Watching Cooper’s pain level rise due to the growing tumors was unbearable
Would It Be Soon Enough?
We decided to move forward with Cooper’s port placement surgery which had been scheduled the next morning up at Riley, so we could get something accomplished in order to start treatment earlier. After the surgery, the surgeon came to let me know that it had gone well.
While we spoke, his words left me haunted and heartbroken yet again. “He cannot wait for treatment, the sooner he starts..” He couldn’t finish the sentence. In all of his years, he hadn’t seen many cases of this type of cancer, let alone a case with it just presenting when it was already so far gone.
We drove home that afternoon, unpacked and repacked and left the next day for Memphis.
Once in Memphis, the plan was to meet with his new team of doctors, get all new scans, and start treatment. Talk about an overwhelming few days and it got worse before it got better. If you are new to your child’s cancer diagnosis, I do not mean to scare you. Every cancer journey is different. For us, St. Jude provided hope and welcomed us with open arms fully understanding we were just entering this world of pediatric cancer and were scared to death.
Cooper started with all new scans with the most advanced technology. And, once again, we found ourselves sitting in another exam room awaiting results. Little did we know how often that would be the case going forward.
First Sign of Hope
That is when Dr. Rachel walked in. She brought a smile that just lit up the room. Lonny and I could immediately tell, she was the one. She talked about the results of the scans, we discussed the treatment plan at length, and she tried her hardest to get Cooper to smile at her. The pain level for Cooper had increased significantly over the course of a couple of days and he had become wheelchair-bound.
Once again, my first thought was the need to know his “chances”. Up until now, the response was grim. Dr. Rachel connected mom-to-mom eyes with me and said, “I don’t treat chances, I treat to cure 100%.” I’m not sure, to this day, if she understood the power of her words. She spoke hope.
I don’t treat chances, I treat to cure 100%. ~Dr. Rachel
When Things Get Worse
His oncologists confirmed everything we already knew but also confirmed cancer had spread to his bone marrow. That meant his “chances” decreased even further. We were already in the darkest spot, how could it get worse? I wish I could say things turned around quickly, but the reality of cancer just doesn’t allow that in our own time. The meeting with the doctors took place on a Thursday and he was scheduled to start chemo on Tuesday. I looked at Dr. Rachel and asked, “Is that soon enough?”. There was a reassurance that a few days would not make a difference.
During our time with the doctors, we also discussed the clinical trial. It consisted of 54 weeks of seven different chemos, 12 weeks of radiation, and three additional months of maintenance chemo. His treatment would take more than 67 weeks.
St. Jude Children’s Research Hospital in Memphis became our new home.
We took the next few days, before starting chemo, to explore Memphis, but didn’t go far, out of sheer fear of how much pain Cooper was feeling. It was also time to start taking standard antibiotics and he was in desperate need of pain medicine. But, we quickly figured out this was going to be our first Olympic hurdle. He had grown up a very healthy kid and medicine was never really a big deal. A few antibiotics for ear infections here and there, but that was it. Now, we were looking at a full syringe or a big pill to be swallowing twice a day for the duration of his treatment.
We continued to grow desperate in trying to relieve any of his pain. I hid crushed morphine in his food, which he found and grew angry with me. We held him down as he screamed and threw any of the liquid medications up. Little did we know, he was developing PTSD and a mental block with pill swallowing.
God is Bigger Than Chances!
Once treatment started, the first few weeks were horrific to say the least. The pain and nausea increased, his weight decreased. The medical team had to intervene with an NG tube to assist with medication and provide nutrition via pump, just to keep calories in him. It took several weeks, but he eventually lost all of his hair.
There are still images that haunt me.
We found a routine that provided some peace. I ended up coming home with my older son, so I could continue to work and provide for our family and keep Eli’s routine as normal as possible. Then on the weekends, we would head to Memphis for a couple of days. Only to turn around and come back on Sunday. My husband and I would swap weeks every few weeks just so I could have some time with Cooper. During those ten hours round trip, Eli would try to keep up with homework as much as possible. I would use those hours as my church. Feeding my spirit with praise, worship songs, audiobooks, podcasts, etc. It gave me the boost I needed before transitioning either to a weekend in our apartment in Memphis or back home for the work/school week.
It took about 4-6 weeks, but we gradually saw Cooper come back to us. His pain level continued to lower, he could walk again. He started to crack funnies and open up a little more with the medical team. With all that had happened the first few weeks, he had closed up even more so than usual. He’s always been a quiet kid with a quick wit. But when he was in pain, he was just quiet.
We also started to get to know Memphis more and had frequent visitors from family and friends, which helped to add some excitement to the days with lots of appointments. And when he was feeling good, we would visit the zoo or the children’s museum for an hour or so. Most of the attractions in Memphis admit St. Jude patients for free. The city truly surrounds St. Jude and their patients and families.
Cancer Free!
During week 19 scans.. we got the THE call. The call I will never ever forget the rest of my life. Dr. Rachel called me to tell me that all of his cancer spots had resolved.
EVERY. SINGLE. TUMOR. WAS. GONE.
Later that night our NP called to let us know that his bone marrow was negative for cancer cells. God’s words from the day of his first scan on the drive home from Indy came flooding back to me as if to reminded me that I could not fix this.
I had no control. I knew what it meant to give it all to God.
“It will be okay. Watch what I can do.” ~ God
Over the course of the next many months, Cooper continued treatment. It was a long and hard journey, but he stayed NED (no evidence of disease). He continued to jump over every hurdle that was put in front of him without so much as a complaint.
Cancer is a Marathon, Not a Sprint
Here we are two and half years and a relapse later. I wish I could share every up and down of the journey, but truth be told every day has its ups and downs. We learned that when faced with a life with pediatric cancer, treatment and just living with cancer is a marathon, not a sprint. There are many days where I don’t know how much we have left, but God gives us what we need every day.
The most important lesson I have learned from our journey is that we have not been promised a life of ease. There will be seasons in this life where the storm feels much bigger than what we can handle. But, God is there to walk through it with us. We can use this time to see the beauty that is given in this life or the sadness. Some days it’s a tough choice, but today, I choose beauty in this journey.
