We are done with chemo, and I’m a little bit afraid.

As of today, we are done with all chemo treatment.  I can’t believe I’m actually writing this.

On April 14, 2014, our family’s world was turned upside down when we were told our little 5 year old boy had Leukemia.  I remember the first night in the Pediatric Intensive Care Unit, watching the nurse come into our room over and over again, switching out bags of blood and other medicines.

I didn’t know much about leukemia at the time, I’m not even sure I was positive it was cancer before Elijah got it.  I knew enough that first night to stay off the internet. There are lots of leukemias, and our boy only had one of them.  Until they gave it a specific name, I didn’t want to walk in the horror of all of them.

The next day, as our doctor and a team of staff from St. Mary’s Children’s Hospital filed into our room, I’ll never forget Dr. Saxena’s opening words.  “OK, your son has Acute Lymphoblastic Leukemia, and this is an excellent cancer to have…”  Say what?

It turns out that ALL is both an awful and awesome cancer to have.  To my knowledge, it’s the fastest killer of any cancer left unchecked.  But it’s also the most common childhood cancer.  Therefore, it’s the most researched, the most measurable, and has among the highest cure rates.  So I guess it is an excellent cancer to have.

But the treatment is brutal.

Three and a half years of chemo.  The first ten months, there were so many injections, so many hospital stays, I just can’t count them any more.  There was the time when Elijah started going into respiratory distress at the second dose of a chemo called Pegaspargase. There was the time where they did an echocardiogram of his heart before giving him some other kind of chemo, because the it’s known to cause damage to the heart.  There was that period where he would get high doses of methotrexate, and then stay in the hospital to get a rescue drug, because, you know, methotrexate can kill you.  There have been so many days in the outpatient center with three sweet nurses who had to check on him every fifteen minutes because the potentially catastrophic side effects of whatever they were injecting him with.  There was the trip to the podiatrist and the Xray of his heel, which showed this little sliver of cartilage that looked like granola instead of a solid object.  Was this caused by chemo?  Who knows.  There have been fevers of unknown origin, causing us to to stop whatever we are doing and head to the hospital for the next several days.  Just last month there was that inexplicable, debilitating headache that lasted for a week and ended up putting us back in the hospital.

There have been at least 2-3 chemo pills (and up to 15) every single day since April 16, 2014.  That’s 1,208 days of chemo.  I take that back, he did get a 2 week break after Delayed Intensification.  And maybe 12 other days where he was so sick they withheld treatment.

I have no idea how many injections of chemo he’s had on top of the pills.  100-200?

Oh yeah, and somewhere over 1,000 prednisone pills.

So it’s not been easy.  But honestly, MOST days have been good.  And we’ve cherished every one.  We’ve learned to cherish the most normal, boring days with all of our kids.  Those are actually our favorites.

I want to take this time to leave a couple of thoughts as a follower of Jesus and a parent of someone who’s finishing 3+ years of chemo:

  • It sounds worse than it is.  All of those stories, all of those numbers, they didn’t happen at once.  And we didn’t know the next one was coming.  So as long as we lived in the grace of that day, we made it through.
  • The presence of Jesus is very real, the grace of God is very real, the comfort of the Holy Spirit is very real.  I could give you story after story…
  • There’s a lot of joy to be had in pain and sorrow. Really sweet joy. At the same time, the root of bitterness will defile even the good things going on in your life.
  • One of the most important lessons of grace I’ve learned is to just give everyone the benefit of the doubt.  People aren’t trying to be insensitive.  The nurse didn’t wake up this morning planning to mess us up.  Most people who say “let me know if I can do anything” really would do something if they could just figure out how.  And I am under a tremendous load and am going to fail at a lot of things.  Just give people the benefit of the doubt, including myself.
  • I ask God to build all of these amazing things into me, my wife, my family, and my church.  I don’t get to dictate how He does it.  My son got leukemia, AND my Father loves us more than I can fathom.
  • Families walking through emotional and psychological illness (especially in a child) don’t get the sympathy and understanding of cancer families.  But in many ways, the journey is more exhausting and terrifying.  We’ve been in both worlds these last few years.  In our case, cancer is a much easier battle.  That’s a story for another day though.
  • And so now we are done with chemo, and I have to admit, I’m scared.  I feel like we know every single child in South Florida who has relapsed.  And we’ve grieved with plenty of parents who have buried their children.  I’m supposed to be overjoyed that we are done with chemo.  But it’s become a bit of a crutch.  And now I don’t know what to think.  So I suppose I’ll just have to trust God.
    • But I know that trusting God doesn’t mean my son won’t relapse. It means that He will never leave us nor forsake us, and His grace will be there.
    • So I will pray that day never comes, celebrate today, live in gratitude, and marvel at the little man and family God has forged through this fire.

Thank you Jesus.

14 thoughts on “We are done with chemo, and I’m a little bit afraid.”

  1. I have watched your family’s journey through this cancer. Good days and bad, you shined the light of Jesus to so many, with His love and grace. I will coninue to pray for each of you, especially that cancer will never return. Thanks for sharing your journey.

  2. Jay,your words are a comfort,an encouragement and a reminder to anyone going through difficulty,disappointment and struggle that there is hope in any circumstance when we turn to God and listen for His voice.The resolution and outcome may not be what we would wish for but He is our refuge,our hiding place and our strength in times of need.
    Celebrating with you for Elijah,today!!Ps 118:24

    1. Thank you so much Ann! I know it’s been the hardest year of your life, and I want you to know that you and Clive had a very special part in helping shape my faith as a little boy. I still remember coming in to Pals for the first time, and Clive asking me if I knew how to fight with a big grin on his face, because anyone in his class better know how to fight! Such fun times!

  3. So well written. God Bless your family and Praise God for the strength He has given to your precious son. You’ll always be in my prayers.

  4. Jay, you are quite the writer. As Christians we can’t ‘wait for the other shoe to drop’ but with our human hearts we tend to have those thoughts. I love that your family is forging on with God’s grace and His daily blessings. I’m continuing to pray for your family. Especially you. You’ve had such loads to bear as a young man. We love you.

  5. Oh Lord, God, Thank you for giving Jay and Emily eyes to see, otherwise there’s no way to have lived through these past 3+ years! Prayers for Elijah’s health to continue to improve!

  6. Oct 21 my son will take his last 6MP dose. We started June 2 of 2014. His is High Risk T-Cell ALL.

    We understand and this was a great disruption. Press on!

    1. Praise the Lord! I’m happy to hear you’re nearing the end of this part of the journey. You understand it like very few possibly can. I pray your son has a long, happy, event free life!

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