Sunday, January 19, 2014


If I live forever, I will never forget the terror I felt today when I witnessed two of Adi's three seizures.

Less than a week ago, Adi was actually enjoying himself in the hospital. And his intrathecal went smoothly, and we officially kicked off the second block of HR treatments, which includes high-dose methotrexate (HDMTX).

Now, methotrexate -- like all chemotherapy -- is poison. And in these high-risk treatments, they kick off with a 30-minute dose of poison infused quickly, followed by 23.5 hours of poison at a much slower rate, given together with lots of fluids, and followed by a recuse course of leucovorin to get the poison out of the body as quickly as possible. Because it's, you know, POISON.

Now, in our first HR treatment, Adi's body struggled to get rid of the methotrexate. They were still drawing levels at 108 hours post-infusion, whereas most kids have cleared the drug from their system by 48 hours, or 72 at most.

Thursday evening, shortly after Adi's 24-hour MTX levels had been checked, the on-call doc -- who is not actually from the oncology ward -- made his rounds. He looked at Adi's chart and spoke with the nurse outside the room. Eventually, they shared the news that Adi's sugar levels were high.

"Well, duh," I said. "He's taking steroids, and he's been eating a regular diet instead of a low sugar diet." They debated this for a few minutes, and ultimately consulted with one of the senior docs on the ward, who explained to them to replace Adi's fluids with low-sugar fluids (DIET IV BAGS) to immediately resolve the issue.

"I'm more concerned about why you're not checking Adi's 36-hour MTX levels," I said to the on-call doc, pointing at Adi's chart, where "NOT NEEDED" was written next to the 36 hour check order.

"Oh, his 24-hour level was fine, so we don't need to check it at 36," he said.

"Last time, he had enormous trouble getting rid of the MTX," I said, the the guy brushed me off.

A little bit later, I saw Adi's actual oncologist and raised my concerns. He checked things out and increased Adi's fluid rate and put the order for the 36-hour check back on. He told me that Adi had also only received 80% of the MTX dose because of his previous reaction. And I went to sleep.

On Friday, Guy came to switch me, and I went home to shower and get ready for Shabbat. Guy got Adi showered and changed, and they were planning on taking a short wheelchair trip around the hospital when suddenly Adi said he was tired. And within seconds, he was in terrible pain, and then his MTX levels came back elevated enough that within moments, we were told that Adi had suffered methotrexate poisoning. He would need a special drug (see the 4th page, Glucarpidase) that had to be delivered from a single location in Israel, and they were working on securing the proper signatures and so on.

In the late afternoon, the drug was delivered by courier and immediately administered. And then it was Shabbat, and our primary concern was that Adi's kidneys were suffering from impaired function. The 7 litres of fluids he was getting each 24 hours would help with that, they assured us. It would take a few days, but kidney function should return to normal.

And then came Sunday morning.

Adi seemed off this morning. He was hard to wake, and puffy, despite peeing insane amounts. His blood pressure was high. He didn't seem like himself, and the nurse and I talked about what we wanted to ask the doctors on rounds. She left the room for a few minutes, and suddenly Adi was seizing, his head jerking back and forth, his eyes glazed. I shouted for his nurse and then raced to the door. I shouted for the nurse I saw and she came running. Within seconds, our nurse joined her, and someone yelled for the doctor, STAT, and I backed away from the bed, shaking.

Even as the doctor was checking Adi, she spoke. "This is a side effect of the MTX," she said. "We knew this could happen," and part of me wanted to scream, "I DIDN'T KNOW THIS COULD HAPPEN," but I couldn't remember how to stand and speak at the same time. Somebody sat me down in the chair next to Adi's bed, and I kept trying to find my phone. I called Guy and told him, "You have to come, Adi had a seizure," and he said, "I'm coming," and I tried to breathe and listen to the doctors and someone gave me some water, and I kept my hands on Adi and told him I was right there and that he was okay, and he was snoring and they told me he would sleep now and then he was awake and fighting and then he was asleep and then Guy called and the doctor talked to him and then he was there and Adi was sleeping, and I was so, so tired.

Even though they had treated Adi for MTX toxicity, they explained, some of the drug had already been absorbed into his system, and this had caused the seizure. It might happen again, the doctor cautioned, and Guy and I sat with Adi and watched him until Guy sent me out of the room to get some air.

I was outside the hospital, walking in circles, crying, breathing, when Guy texted and immediately called, telling me to come back. People kept piling into the elevator, and it took us forever to reach the seventh floor. I raced to oncology to find them moving Adi into the room right in front of the nurse's station. "He had another seizure," Guy said, and they had to give him something to stop it, and he was sleeping again, and there were so many people in the room, and Adi's face was so slack and empty and I could feel the terror that threatened to just swallow me, and it was so tempting to just give into it, to let it swallow me whole, but then Guy was there, talking to Adi, and so I came back over to the bed and talked to Adi, and we watched the numbers on the monitor and we stayed with him and the hours went by, and then I said to Guy, "Is this what his eyes did before?" And he said, "Yes, call them!" And I yelled for the nurses and they yelled for the doctor and then Adi was snoring again, and now it is 4:55 am on Monday, and this is my shift to be awake and watch the monitor and watch Adi, and part of me feels like it will never fully relax ever again.

I can tell you that just a few hours ago, when we changed Adi (he had wet the bed because he is sleeping so soundly and getting insane amounts of fluid), he told me, "You're not going home, Mommy," and they were the most beautiful words I have ever heard.

And I hate cancer.


Crystal T. said...

I'm so, so sorry. That is just awful. Please, make sure you take care of yourself, too. Do you have a therapist you can talk to? Can you do something that will help soothe you? I always find a hot cup of tea is very grounding. I felt like I could get through anything if I had a warm beverage nearby. I hope you have something like that. HUGS.

Mara said...

Oh Abbi. I'm speechless. Again.

I wish I was there. And could hold your hand. Or your other kids' hands.

I'm so so so so sorry.

Shuli said...

I've been following your posts throughout this horrific journey, yet never commented. But I wanted to let you know that Adi and your whole family are in my thoughts and tefillot...and that I wish there were something else I could do to ease your pain.