“Death leaves a heartache no one can heal, love leaves a memory no one can steal.” -author unknown-
I received a call from a stranger last night. I generally don’t answer my phone if the caller’s name is not listed, I send them to voice mail. Then, I received a text from the stranger, “You are so very kind…. & please let me say I loved your article.”
It was then that I realized this wasn’t a stranger, but a very important phone call that I must return.
On December 23rd I shared with you one of the most inspirational Smarty Moms that I know; Mandy Slocum and the phone call and text were both from her mother.
I called Mandy’s mom back right away. This was our first conversation we had together, but it was as if we knew one another from that first hello. I sat in my darkened dining room, tears rolled down my face as I listened to this remarkable mother. She shared stories to inspire and guide and provided hope without her even knowing it. I know now where Mandy gets her strength and courage from.
When I featured Mandy, I knew what I wanted our readers to learn about this amazing Smarty Mom. This fantastic mom, her fight for her son, her will, her determination, her love.
However, what I wanted to share with you today, there are no more eloquent, inspiring, nor just words that I could deliver adequately as Mandy has done via her CaringBridge Page. Mandy and Wes lost Drew unexpectedly on January 2nd. Drew did NOT pass from his Leukemia, Drew beat Leukemia.
“When God pushes you to the edge of difficulty trust Him fully because two things can happen either he’ll catch you when you fall, or he will teach you how to fly.”
God’s Hidden Graces
By Mandy Slocum — Jan 6, 2015 9:20pm
Since Friday, we’ve not only grieved the loss of our baby boy gone too soon, but we’ve also been beating ourselves up, churning over the events of last Wed/Thursday night (as well as the last 2 months). We’ve questioned over and over, what in the world did we miss? What was going on within Drew for so long, making him so miserable, that we failed to find? We’ve spent the entire 2 years of Drew’s sweet little life doing our very best to try and stay ahead of aches, pains, ailments and symptoms from treatment with every hope that we could prevent him from experiencing extra unnecessary discomfort. He was already having to go through enough. We performed ongoing assessments of his little body at home to be sure we knew about anything that could be bothering him. How was it that something was going on for over 2 months, and we had no clue what lead to his death? Not only were we living the nightmare of losing our precious baby boy, but we’ve been tortured with having absolutely no reason, or answer, as to why. Why, God, did this happen, and why did it happen so quickly?
We got a call today from our oncologist that preliminary results had returned from Drew’s autopsy. Our hearts raced immediately with the fear of 1) still not having an answer, and 2) actually hearing the answer of what took our baby away. Our oncologist, who might be the most kind, gentle and emotionally involved medical professional we’ve ever come across, offered to come speak with us in the comfort of our own home to go over all of the findings. I can assure you, with my medical background and experience, this doesn’t happen very often.
The pathology report from Drew’s autopsy showed that he had a very sick, enlarged and damaged heart from what is called infectious myocarditis, which inevitably lead to heart failure. From what they can tell at this point, his heart had 10% function (60%+ is normal) and there was no apparent damage from the heavy chemo he had received almost a year ago. The damage was more than likely a virus that settled into his heart. (He had previously had 2 normal echocardiograms) We have no clue of this timeline … from when it started to what exact virus may have caused it. All we know is that he’s felt pretty puny for 2 months. He showed no other typical signs of heart failure the entire time. No lab test, vital sign or physical finding came back abnormal that would have led a workup in the direction to find it. Our oncologist said myocarditis is a fluke thing that can happen to anybody, sick or healthy, and that unfortunately there are often no signs or symptoms of it until it’s caused too much damage. If you’ve ever heard of young athletes suddenly passing playing sports or normal healthy young adults passing without understanding, myocarditis is often times the unfortunate diagnosis. Drew did NOT pass from his Leukemia. Drew beat Leukemia like a rockstar and fought like a champion the entire way through it. His compromised immune system made it hard for his body to fight a virus, and that virus settled into his heart, leading to heart failure.
The medical team has been going over all the records, talking with all the appropriate specialists and trying their best to come to an understanding of everything. Once hearing from pathology about the myocarditis, they consulted with cardiology to understand what could have been done had we found it and the only thing really to do for any patient with heart failure is a heart transplant. With Drew’s history of leukemia, however, he would’ve had to have been 2+ years post treatment to even qualify for a heart transplant. In other words, there would have been no treatment options for Drew.
For the last several days, we’ve been so very frustrated, mad and upset with having no answers or understanding. Today, we have realized that had we actually known the answer to why Drew was feeling so poorly, the way our last few weeks/months would’ve gone would have been so completely different. With knowledge of heart failure, all of our current treatment would’ve stopped, we would’ve been admitted to the cardiac ICU, Drew would’ve been attached to God knows what types of lines, tubes and monitors, he’d likely be pumped full of some Godly amount of awful medications and we would’ve been told you have limited time with your precious boy, there is nothing we can do.
In the depths of my bones, I’m believing that God protected us and Drew in a way we could’ve never anticipated or imagined. Instead of the above scenario, we unknowingly helped Drew live out his last days in the comfort of his own home, with the comfort of being held by his Mom and Dad, with the comfort of sleeping most of each day in either of our laps and with the comfort of being around his most favorite thing on earth, his “Bubba.” We didn’t spend Christmas listening to ICU monitors going off. We didn’t spend long sleepless nights in an ICU worried over which breath might be his last. We didn’t live each day in fear of when he might leave this earth. Instead, we were gifted with continuing to love and care for Drew as we usually do, soaking up his cuddles and going about our usual routine unknowingly living out the ideal scenario for his last of days. We cling to the peace that comes with this belief. It doesn’t change the outcome and it certainly doesn’t bring him home, but it allows us to feel truly blessed for the short time we had with this precious boy on earth. We were given an angel baby and will be forever blessed with the joy he brought to us and to this world.