It’s Tuesday

It’s only the second day of antibody therapy and already my brain is complete Jello. When I turn my head I can actually feel the gelatinous mass quiver inside my cranial cavity. I wonder if my Jello-brain is a pretty, decorative molded shape or perhaps a delicious flavor? Doubtful. It’s more likely that my Jello-brain consists of unflavored gelatin and is very watery – like it’s been left in the back of the fridge for too long.

I ain’t joking. My brain is Jello.

Yesterday absolutely sucked. I always have some anxiety revolving around anything “new” in Ben’s therapy and despite talking with folks about how their kids handled this 3F8 antibody, there’s just no knowing how your kid will react. I was prepared for pain – and Ben was prepared for pain – we just didn’t realize how much. And for how long. I thought that once the infusion stopped that the pain would stop. How wrong I was.

So. I snuggled on the bed with the Bean when they told me the 3F8 infusion had begun. I wanted to be right there. Ready and waiting. Able to soothe as soon as he needed me to. As we were lying there he said, “Mom, my tummy hurts.” I started rubbing around his belly button when he said, “No, it’s much lower… aaaaaaaaaaaarrrrghhhhhhhhhhhhh!” The last bit of this sentence not only scared the crap out of me but had Ben shooting up off the bed and screaming at the top of his lungs.  He flopped like a fish out of water, gasping for relief but not able to find it.

I’ve never seen – or heard – anything like it, let alone deal with the fact that it was coming from my son. I got off the bed and started trying to figure out where his pain was and what I could do to fix it. He cried that his lower back and bottom hurt. The nurses asked if he wanted ice or heat for the pain. He cried “Heat!”. We popped heat packs and started applying them to his back. That’s when he screeched “No! Ice!” We dropped the heat packs like hot potatoes and started popping ice packs. I didn’t know how these packs worked initially, which frustrated me to no end, but once the nurse showed me her “grab and twist” method, I quickly became an expert. Popping the ice/heat packs was the only fun I had all day. It kinda gives you the same satisfaction that popping bubble wrap offers.

Ben screamed. A lot. He cried for someone to help him, which made me feel ridiculously inept. The nurses and I rode out his storm of pain until he fell into a pain-med-induced sleep. We held the ice packs on his back until we were sure he was asleep. Then I fell into the chair, dumbfounded by what had just happened. I thought that since the infusion was over that the pain would subside. That’s when Ben started experiencing neuropathy in his feet.

I was sitting in the chair watching him when his eyes opened and tried to fix on me. I leaned forward and said his name, trying to be reassuring that I was right there and ready to do all I could. It was as if he was looking through me toward something far behind me. The look on his face was something that I will never be able to explain. His eyes kept widening. His brow furrowed. His mouth drew thin. It was like he was seeing the scariest thing on the face of this earth but he wasn’t looking at anything at all. Then he began to shake his hands like he was trying to swat at a bug. Like he was trying to discourage a bee from stinging him. And then he started crying hysterically that his feet hurt beyond belief.

This neuropathy is not a super-common side effect. At least, they don’t pre-medicate everyone for it. It can happen. It’s been known to happen. But it’s not something that happens to all kiddos on this 3F8. Of course, it happened to Ben. The pain kept waking him up and the only thing that would help was putting heat and pressure on his feet. And that wasn’t even really all that helpful.

He cried so much yesterday. He pleaded for God to help him. I pleaded for God to help him. I cried so much yesterday.

We finally left the hospital around 5:30. I think. It may have been closer to 6 pm. I don’t know. As we were leaving, our nurse said “see you tomorrow” to which I answered “I’m not bringing him back.” She chuckled. I gave a half-hearted chuckle and kept walking, pushing my passed-out Bean in a wheelchair.

Once we got back to The Ronald I put him in bed. He couldn’t get comfortable and would intermittently yell out that he needed his feet massaged. I popped some more hot packs and wrapped ace bandages around his feet to keep the heat focused on where his pain was.

It was right before he fell asleep that he needed help going to the bathroom. I carried him in and helped him stand since the pain meds had made him very unstable. He was very shaky and didn’t want to put any weight on his feet. As we stood there he said “Mom, I’m ready to meet God now. I wish it were my time.”

Finally, about 1 AM, he fell into a sound sleep. I stayed up an hour or so later, shell shocked. What had just happened? And how will we make it through the next day? And the next day? Four more days of this horrible pain. And that’s just the first round.

At that moment, I realized the day I believed couldn’t get much worse had completely broken my heart.

6 thoughts on “It’s Tuesday”

  1. I have had several children I’ve taught over the years battle cancer or sibblings that were battling it. I can’t imagine the pain you are going through as a parent, and reading this post broke my heart. I will continue to pray for strength and comfort for Ben and your family. May god bless you all.

  2. I don’t have any words really, Sarah. I am on my knees, begging God to stop this madness and give your son the life he deserves. Love you both so much.

  3. You and Ben are amazing, strong and powerful; the two of you can move mountains! Now that they know of the neuropathy they can pretreat for it, correct? Can they start him on higher pain doses and maybe use smaller rescue doses as the day goes on? Can they give you a vodka IV and put you in bed with Ben? Sarah, if there was any way I could help even a bit, I would. All I can do is what I am and have never stopped doing: praying. Ben HAS to win! He HAS to, HE got the ch14.18 antibodies, Eden didn’t. Ben needs to be the PROOF. GOOD LUCK tomorrow.

  4. A friend of a friend of a friend of yours forwarded your entries to me. They are a gut wrenching look at your struggle. Please know that I am praying for Ben and for you. (Columbus, OH)

  5. Oh Sarah, I’m so sorry that even the treatment that is saving him is so awful and hard for you both. UGH! And I just read your other post about the asshole in the black car. Kinda makes you want to keep a crowbar stashed in the wheelchair for next time!

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