What do you do?

Recap: Asparaginase is a game changer drug that raises lymphoma outcomes by about twenty percent. Ben is allergic to the most common form. The back-up drug is not available. The decision was made to try to desensitize Ben’s reaction to the asparginase. (more in the previous blog)

Don’t get too comfortable

We are learning that everyone’s cancer journey is different, and no one gets through it without any complications. When we began treatment for lymphoma we were told about roadmaps and treatment blocks, and, after the first block, induction, we pretty much thought it was a plug-in-play type thing. We sailed through the first block, and we had heard from a number of people that it was the worst one. So, cancer sucks, but no problem. We can do this.

And then things went sideways a bit.

When last I posted we were on to Plan D. We had found out that Ben was allergic to PEG Asparaginase, a game changing drug, and that the back up drug was not available. Facing that reality, that decision was made to try and desensitize Ben’s allergic reaction.

It is not a small thing to overcome the body’s allergic response but, with no other options, Ben was admitted to the Pediatric intensive care unit, and prepped for a very long day. Initially, Ben was given a dose of steroids to prep his body and then a 1/100 does was administered. Amazingly, Ben sailed through it like a champ. No reaction. Praise God! The does was then upped to 1/10. As the drug slowly dripped into his bloodstream, things began to turn. Initially Ben began to cough a little. The protocol says to watch it and continue, so my wife and Ben’s nurse stood vigil and watched. Drip after drip, the infusion continued. And then a hive appeared. Then another. Doctors came in and the desensitization was paused. Ben was given the biggest does of Benadryl that was deemed safe for his body, and everything paused. It was not a good sign.

CHOC had never done a PEG Asparaginase desensitization before and we knew going in that there was about a fifty percent chance. The doctors told Christina that they would continue as soon as the hives receded, but that this probably was not going to work. She called me. We talked it through.

What do you do?

What do you do when Plan D fails? You do the only thing you can. You stay strong for each other. You pray. You remind each other that God is faithful and that, ultimately, it is Him in whom we put our trust. And that is what we did. Christina went back to watching Ben, and I went back to doing chores to stay busy.

As I folded laundry I began to pray. I have felt closer to Mary through this struggle than ever before, and as in previous times of challenge, the Magnificat, Mary’s song of praise, has just come to my heart. When my Dad passed it was the one song I knew we had to sing. When Ben was so pumped up with prednisone and raging, it is what I sang to calm him. So again, there by myself, I prayed and sang the magnificat.

My wife, the lioness that she is, was there at Ben’s bedside, watching and waiting for his reaction to fade. In a time that could easily have turned to despair, Christina turned to hope. She asked the doctor and nurse to join her, and they prayed over Ben. I married very well.

The hives faded. The desensitization continued. the 1/10 does was administered, and then a slow drip of the full dose was started. Time passed, and the rate of the drip was increased, and then increased again. And then it was done. Ben made it. He got the Apsariginaze. It worked.

Our hope is in the Lord.

We take the chemo, we follow the plan. We fight with everything we have, but our hope is in the Lord. We think this worked. Initial blood work points to that conclusion. But we will still need to do this five more times. In the coming weeks Ben will be back in the PICU.

Thank you for praying with us. Please continue to pray. God is faithful, even in this. We cleared one hurdle, there are a number of hurdles still to come. Praise God!

A Song to Worship With