Drew's Story - under construction

Friday, November 13, 2020

Election Night

 I thought I had gotten through all of the "firsts" without Drew.  But four years later, another first came up this month--the first Presidential election night.  Now you wouldn't think that would be too significant of a first, that it would trigger a huge wave of emotion.  But the last time we all held our breath in America and watched the results come in deciding who would be our next President, it was one of the worst nights of my life. 

Drew was beginning the first round of the clinical trial we decided to be a part of through Mayo Clinic after his cancer was found to be active and growing again. A little more than a week had past since we were told the devastating news that Drew "probably" wouldn't be a long term survivor. I shared about those feelings last month, and how it put such a dark cloud over Halloween that year.  But a little over a week later, we had pulled ourselves together enough to keep marching forward, keep fighting with and for our Drew. 

This trial had about a 50% chance of slowing the cancer down, of making a difference at all in the progression of the disease. No one had gotten far enough with the trial to be declared free of disease long enough for it to be counted as a successful treatment, but it was our best shot at buying more time. And my heart held onto hope that maybe, just maybe, Drew could be the first to reach "No Evidence of Disease" from the therapy.  Maybe he could be the one it worked on.

We checked in to the hospital on Monday, and got all the usual things going.  I was excited to see a friend I had made at the hospital was also on the floor this week too, with her son who had a form of brain cancer.  They were just 2 doors down.

We had visitors the next morning, Election Day--Drew's best friend Andrew and his Mom.  It was so fun to see him with his friend--playing with cars, and riding big wheels around. And it was nice to have his mom there too, my friend who had gone through the year right along with us. 


With the new realization that these play dates may be numbered, I watched Drew play and enjoy simply being a little boy with his friend with even more interest.  My heart wishing, Oh sweet boy, I hope you get to play with your friend many more times, outside of the hospital! 


That evening, it was time to get to what we came for--treatment.  First up was the infusion of the antibodies, and chemo would follow. I'd heard that the body can have big reactions to the introduction of the antibody cells, and terrible nerve pain can follow.  So much so, that they give narcotics right along with the antibodies to keep up with the pain.  Nurses told me that older kids who can express themselves better describe the pain as a full body pain, like nothing you've experienced before. 

I was nervous for my sweet 2 year old son, to say the least.  But as the infusion began, he showed no sign of pain.  In fact, was dancing on his bed!  

We did his bath, and began getting ready for bed when the pain caught up to him.  He started by telling me he was hot. "Hot, hot Mom, HOT!" as he came over to my arms...it quickly escalated to him being just beside himself in pain.  Crying, harder than he had all year, as I held him, rocked him, and sang in his ear trying to calm him down, with tears streamed down my face too.  Nurses came and I asked for more pain drugs. We slowed down the rate of flow for the antibodies.  We tried everything to give him some relief. But with each increase in narcotics, no relief seemed to come. Finally they nurse said we couldn't give him anything more, we had to wait for it to catch up. 

Sitting with him in my arms, crying in pain, I pleaded with God, please, please make it stop.  Have mercy on my boy, and don't let him hurt anymore. 

It must be so difficult for the Lord to hear those kinds of prayers, the pleading of a mother to take on the pain for one of her children.

It made the whole thing worse to remember that night as I held him, that throughout the whole year of treatment Drew had endured so much in such brave form, hardly complaining at all.  Why, why did this sweet child have to do anything else?  And what was the point.  If it wasn't going to work anyway, why were we putting him through all of this...  

The drugs finally caught up, and I could feel him go limp in my arms, falling asleep after about an hour and a half of intense pain.  I remember finally standing up out of his bed and feeling the tension in my own muscles, the stiffness from the adrenaline in my own body from the whole ordeal.  

I walked down the hall to my friend, who had made popcorn on the stovetop in the kitchenette and was watching the election results.  There's a connection that forms between moms up in the ICU. We are the few that can relate to one another, and truly understand what we go through with our children. 

As I stood in her doorway, I think she could tell that whatever was going on, whatever had just happened, wasn't good.  I remember standing there and not even being able to go into just how terrible the last 2 hours had been for us. I tried to hold it together, not break down right there on the spot. But she knew, I could feel it.  She offered me some of her popcorn. And it was the best popcorn I've ever had.

My attention turned to the news coverage, and I was amazed to see that the candidate we both voted for was actually doing well. He wasn't suppose to win, I didn't have a real expectation that he would.  But as the night went on, it got more and more apparent that he was very much in the race.  I kept returning to my friend's room as Drew was still zonked out, and we celebrated each state getting called for our candidate until finally, the winner was declared. That night, it was just what I needed, an unexpected win.  A reason to get excited and be pleasantly surprised.  Both of us did!

I reached out to another cancer mom the next day who I knew who had been through the same infusions with her daughter. The first day was the worst, she told me, but it gets better.  You figure out a balance between the rate of antibodies going in and rate of pain drugs along with it. That gave me some comfort.

I asked the doctors on rounds more questions about the trial itself, and got reassurance that we wouldn't be doing this if there wasn't a real shot at helping Drew.  At giving us more time together.  That made me feel better too. 

The next night's infusion was not like that first night at all. Thank heaven! We made our way through the first round of the trial, one day at at time.

You all know how the story ends though, Drew didn't end up being the one to be cured by the trial.  As it turned out, he wasn't even in the 50% that see any help in slowing down the disease.  

He'd die just over 2 months later.  

So that's why I'll always remember election night, 2016.  And why it was such a difficult "first" since Drew's been gone.  The build up and anticipation felt much like 4 years ago, and triggered all of these memories and emotions.   My friend from down the hall and I reached out to each other last week, both of us thinking of the other and remembering how we spent election night 4 years ago together. Our sons are now together in Heaven, my guess is NOT paying much attention to the election 😉 


The election of 2020 though has obviously not been like the election of 2016 in many ways. Yes, it sure felt the same leading up to it, but there was no winner declared on Tuesday night. We will see who gets inaugurated in January, and many emotions are on display from both sides as tensions rise politically.

The coverage of national reactions and celebrations, the social media posts of glee and relief, but also those of anger and frustration, show the very intense feelings out there. As I watch it all and take in all the comments and posts I can handle, I'm realizing something.  Behind the initial emotions, maybe the most dramatic reactions of some are a result of being too dependent on circumstances for happiness.  Some people seem to either have all of their hopes lost in the election, or likewise have gained back all hope as a result.  

Now, I believe elections and politics are important, don't get me wrong, I get into them too!  I think it is our responsibility as citizens to be engaged and involved in the political process. I too had some strong reactions, felt some of the same feelings many of you have felt in the last 10 days. So as usual, I write this as much for me to think about as anyone else. 

So let's think about it--has anything actually changed from Tuesday last week to today?  Our personal situations, for the large part, have remained the same. What has changed is the perceived future, and with it, perspective.  It's all in our minds whether we're going to be better off or worse off after the election last week, we don't really know for sure. And that perspective has totally, radically in some cases, changed some of our attitudes and moods. Politics aside, do you see what I mean? Can you see how this one result, one event, has made such an impact in the lives of many Americans?  

Is this a bad thing?  Yea, kind of. If your mindset and hope is based on things that are out of your control, bigger than you, then you will always be riding a roller-coaster of hope and desperation. We have the power within our own selves to choose to be hopeful, to have joy, and to not let this world effect our own little world every day. Regardless of what happens to us. Do you see what I'm trying to say?  We shouldn't let an election throw us into despair, or be the only reason we are smiling today. What if we decided each day to be hopeful and happy all by ourselves?  Didn't leave it up how the chips fall around us?  I know its possible, and what a difference it can make.  Drew showed me that in 2016.

I can't leave this idea without adding that the only place to always find hope and joy, is through faith in God.  Jesus has already won the battle, beaten His opponent, 2,000 years ago on the cross. And it's in that victory that I have set my hope, and found real peace and joy in my life--not through whoever is elected President. It would be nice if my candidate wins, but if not, I can still choose to live not in anger, gloom and fear because I know it will all work out in the end. 

And in that ending, I'll never, ever, have to hold my son as his whole body quivers in pain again. Instead, we all will filled with joy, surrounded by love, celebrating the only One who is worthy of praise 🙌