Treatment is Over...What Now?

Imagine for a moment that for x amount of time, you have one goal and only one goal.  You spend every waking moment trying to attain that one goal.  Then suddenly you achieve your goal.  What do you have then?  Who are you then?  What do you do next? 

Now imagine for a second that the one and only goal was to make sure your child lived. Imagine that for a second there was no guarantee that your child would have tomorrow or a week from now.  Imagine that for two years straight or four and a half years straight your only waking goal was to ensure that your child survived.  That’s what the last two years have been for Erika and I.  That’s what the last four and half years have been for a friend of ours. 

We have literally spent that entire amount of time with one thought and that was to keep our child alive.  We secluded ourselves from others, hurt friendships, lost family members, and kept to ourselves and our home.  We sacrificed our fun and our family traditions to make sure that our daughter stayed alive.  The last two years we spent worrying over every bump, scrape, fall, sneeze, cough, and especially fevers. All this with one goal in mind, to keep her alive, to make sure she lived to be a normal kid.

Now she is in remission and we have achieved our goal. We made it to the proverbial end of the yellow brick road, our emerald city if you will. 

And now what?

Life goes on. 

We seem to be more busy now than ever before when we had all of her appointments.  But where did it leave us? Where did it leave Erika and I (not as a couple but as people)?

Previously I would write once a week or two to three times a month while she was getting treatment.  It seemed to be my cathartic way of getting out all of the crazy emotions I was feeling, you know the stuff that is deep down that you have to find a way to get out or it will drive you a little crazy.  That’s why I wrote.  I wrote to show the world what it felt like to be a dad in all of this crazy. 

I wrote to heal. 

Now Adeline is in remission.  There is no more goal.  She is alive and well and we have so much to be grateful for.  So for the last several months, I haven’t written.  It was like writer’s block had built up inside me.  But there has been a call for me to write and I just didn’t realize it.

Our one goal, our primary focus for the last two years was to make it through Adeline’s cancer and now we have.

So now what? 

Who am I, what am I supposed to write about?  What is my purpose? 

You’re probably reading this and thinking well now you move on, you still have to keep her and all of your other children alive and well.  You still have a career to focus on, you still have a life to live. 

And I get all that trust me I do.  But it’s kind of just this weird feeling like okay, now it’s all over, where do we go from here, what do we do next? 

I pray all the time for God’s guidance for both me and my family.  I pray that He will continue to guide us and put us where He wants us to be. 

But truth be told I feel a little lost at times. 

Adeline is moving on for the most part and I feel as if I am stuck in the "what to do next stage".  Or maybe it isn’t the "what to do next stage" but more like the, "what happens when I leave the cancer life stage?"

A friend of ours and fellow cancer parent has a teenage boy who has been fighting for four and a half years. 

Four and a half years working towards one goal, to see him survive. 

He is nearing the end of his current treatment and currently, the tests show that he seems to be entering remission.  She shared with me that she is a nervous wreck right now.  She shared that even though those tests came back clear she is still fearful of relapse. 

He has a rare form of cancer that is especially prone to relapse.  Knowing this only drives that fear more.  She made a comment that struck me deeply.

“With his formula cancer, it is prone to relapse and this will be the first time he will be without or anything fighting the cancer in 4 1/2 years.”

For four and half years they have been fighting cancer.  And while you initially think, wow it is amazing that they are almost done, there is a deep fear there. 

She is fearful that without the chemo to fight against it, the cancer will return.  \

I hadn’t really thought of it from that perspective for her and her son.  But now there will be nothing to fight it off once he is off the chemotherapy.  That is the fear. 

The fear of relapse is so strong that you are afraid for your child to be off the body-destroying chemotherapy medicines. 

It never stops.

Before continuing on I’d like to say something to that person. 

First off I want you to understand that it’s okay to be afraid.  It’s okay to be fearful of relapse.  It's okay to be afraid of your child being off chemo especially given his form of cancer. 

Secondly, no one judges you for that.  No one. 

Thirdly, I urge you to take it to God in prayer.  I’m sure that you already have but I urge you to continue because it is very likely the only way you will find peace. 

And lastly, I want you to know that Erika and I are always here for your son, you, and your family. 

Continuing, I reiterate that it never stops.  The pain, the fear, the constant worry.  It never stops.  Every little sign of sickness will forever spark a concern for cancer. 

When you don’t experience this first hand you just assume that when they say no more treatment they mean that it's done, it's over, and life just moves on.  But it doesn’t.  Not for us.  Life doesn’t just move on.  Ten years from now when Adeline is getting scanned again we will still be on the edge of our seats.  We won't let it stop us from living our lives but that’s how it is, we won't stop worrying either. 

Relapse is real and it’s scary.  Relapse is real and it doesn’t leave your mind just because your little one isn’t right there getting treatment.  It stays with you as a parent and a patient forever.  I urge anyone reading this right now who may have a child with cancer to understand that you aren’t alone.  You are not alone in this.  We are here.  Us and so many more.  Don’t feel lost to the worry of relapse because you are not the only one.  We are all here ready to support you in any way.

But all that brings me back to me.   Where does any of that leave me? 

It leaves me struggling to find meaning in my actions.  It leaves me wondering, what next?  Why do I tell you all this? 

Because I think it's important for you to see what we go through.  I think it's important for you to understand that we aren’t able to just move on. 

But I also want to spread this message to all of the childhood cancer parents out there.  You aren’t alone in your fears.  You aren’t alone in your anger.  You aren’t alone. 

And from my faith, I say to you, you are never alone. God is always there.  Tell him how you are feeling.  Take it to him.  He is bigger than your fear, He is bigger than your anger.  He can listen and hear all that you say.  His love for you is greater.  Please remember that.  God’s love for you is greater. 

Two verses I want to share with you today.  The first is John 16:33 (NIV), “I have told you these things, so that in me you may have peace. In this world, you will have trouble. But take heart! I have overcome the world.”

“I have overcome the world,” what a powerful statement.  In this world, we will have trouble but take heart because He has overcome the world.  There is nothing that we cannot face when we walk with Christ.  He has overcome the world and all that the world can bring into our lives.

The second is John 14:27 (NIV), “Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”

Take your fears to Him.  Take your anger to Him.  Take your unrest to Him.  Take it all to Him.  Take it all, the good, the bad, and the ugly.  Take it all to Him and let Him leave His peace with you.

Not sure if anyone reading this needs to see those words but God put them there for a reason.  He wants us to trust in Him and find peace in Him, Yahweh-Shalom, which means The Lord is Peace or the Lord is Our Peace.  The Lord is Our Peace, Yahweh-Shalom.  Let that be a reminder to us that the Lord our God is our peace.

Thank you for taking the time to read this today.  I hope you get a glimpse into what we go through post-treatment and understand if we still seem a little jumpy about things. I want to leave you with this prayer.

Dear Lord, thank you for today. Thank you for each and every day that you give us and thank you for each and every day you give us with our loved ones. I pray Lord that anyone needing to read this will find it. Anyone needing your love, your peace, your grace, or your strength will find this and read it. I pray for our friend, her son, and her family Lord. I pray that you will continue to heal him and give him strength and I pray that you can bring him and all of their family peace. Thank you again Lord for loving us the way you do. In your holy name I pray, amen!

Thank you again and until next time....