Thoughts While My Son Receives Chemo

I would like to share a journal entry from earlier this year. This was written a little less than a month after our 21 month old son was diagnosed with a cancerous brain tumor. This was written after his brain surgery and during his first round of chemo. At the time he was not talking, walking, sitting up, eating orally, or even swallowing his own saliva, all effects from surgery to remove the tumor. He has come a long way and he still has a little ways to go, but I couldn’t be more thankful for his great progress. Sharing in hopes of encouraging those of you who are walking through hard things. God is near and deeply desires to strengthen, encourage, and heal our hearts. He’s done so with me & I know for a fact that He wants to do so with you. <3

May 14, 2020

In the trenches.

Somewhere I wish I wasn’t. Seeing things I wish I never had to see. Feeling pain I wish I never had to feel.

I’m currently sitting in Eliam’s hospital room by myself as he sleeps. Ethan and I are not allowed to be here together right now. Thus far, it has been hard, but I have been choosing to press in in trust. And while my resolve to trust has not wavered, my heart is certainly hurting.

I cry as I write this – I just want to be done with all of this. I want to bring Eliam home and be together as a family. And if I am being fully honest, I want to stop the chemotherapy and conventional treatment. I want to take out the broviac catheter, stop all antibiotics, and go home. I want to try the natural route. The route with no negative side effects. The route that seems more God-designed. The route that wouldn’t require six months of incredibly strong chemo. The route that seems more healing and good.

Thus far, we have been told we can’t give Eliam probiotics, high doses of vitamins, etc. Things I know are good. I realize I am no expert and am grateful for what doctors do know. I am grateful that the vast majority of the tumor is gone.

I just want to be done with it.

I want to see my son fully healed, now.

Part of the reason why my heart is hurting is because I can hardly recognize my son. I look back at old pictures and videos and am reminded of who he really is, because I had forgotten. My son can talk. He walks, sits up, eats perfectly, feeds himself, plays. He blows kisses, lifts his hands in worship, and shouts “victory!”. He shoots basketballs with incredible accuracy, climbs into his own high chair while he waits for his “na”. He loves holding the mail, having some of my bagel, and singing “oooo” along with worship in the car. He thinks Nico is the funniest person, loves his Bompa’s airplane rides, and learned to go down slides by himself.

But where is this boy now? Where is the boy who says “mama” and “luh-you”?

I just want to go back to our mommy and Eliam Wednesdays. To when he was pain free. To when he did all those things I wrote about above. To before the surgery that caused him to temporarily stop speaking, sitting up, walking, etc. To before the chemo and infections that caused high temp, HR, and BP. To before the feeding tube that makes him squint his nose.

And even more than I wish I could go back… I wish I could fast-forward. I want all of this to be over and behind us. I want to see all of his functions fully restored and miraculously improved. I want to see the enemy cower in fear and regret as the God of the universe heals, strengthens, promotes, and moves supernaturally in and through my son. I just want to see God bring complete breakthrough and healing.

I see God in this, I do. He is here in the room with me right now. And when I walk out of the hospital at 9pm each night, I know for a fact that He both stayed behind with Eliam and goes with me back to my parents. I am confident that He is near. That His grace is sufficient. That He strengthens us all. That He is working behind the scenes, orchestrating a beautiful rescue.

I’ve seen Him do all of this before. I am so incredibly grateful for this, as it is now easy to believe and trust. I can look back on His past faithfulness and look to the future with confidence that I will see it again.

But there is also an ache. An ache in my heart and spirit to see something I’ve never seen before. To see a miracle of complete and instant healing. I’ve seen God use modern medicine to heal. I am so grateful for that. But what I haven’t seen is a breakthrough healing encounter with God that leaves doctors and nurses confounded. What I want to see is God touch and raise up Eliam right in this moment, that he wouldn’t have to suffer another minute. I want to see Eliam sit up, crawl out of the hospital crib, walk over to me, and say “mommy, Jesus healed me” with a big smile across his face. Honestly, I desire to see the miraculous apart from modern medicine. I want to see God move, big time.

I don’t want to be robbed of these last few months I have with just Eliam before baby girl comes. I choose to trust that God will redeem. That He is with us in these next few months with amazing things in store.

I want to be home with my healthy, thriving son before I give birth.

Please, God, may this somehow all be over before baby comes.

 I will close my thoughts for tonight out with this-

Though I want to run, I will stay.

Though I want to hide, I won’t stray.

Though my heart is heavy, still will I continue to put on a garment of praise.

Thought my cares are great, I will continue to lay them down at Jesus’ feet.

And at the end of the day, I remain steadfast in trust.

Confident in His goodnesss.

Aware of His nearness.

Hopeful of His rescue.

And as Psalm 43:5 says, so I will once again say-

“Why are you downcast, O my soul?

And why are you in turmoil within me?

Hope in God; for I shall again praise Him,

My salvation and my God,”

“Fear not, for I have redeemed you;

I have called you by name, you are mine.

When you pass through the waters, I will be with you;

And through the rivers, they shall not overwhelm you;

When you walk through the fire you shall not be burned,

And the flame shall not consume you.

For I am the Lord your God.”

Isaiah 43:1-3

12/8/2020

I cry reading this every time. Looking back, I cannot help but cry remembering the deep pain. Yet I also cannot help but cry seeing God’s goodness and faithfulness woven throughout it all. We are still going through treatment and my heart still has days of deep pain and longing for all of this to be over. But I remain encouraged that God is near and soon this will all be behind us. This is true for every hard thing that we face. When we go through hard things, we truly are going THROUGH, to the other side. And with Jesus, the other side always holds promises fulfilled and victory.

XOXO

Sammy Kastello