Tuesday, December 24, 2013

Nothing is ever simple

So there we were, waiting for our Peg-Asparginase. We've had it before, and it's annoying, because they have to monitor Adi's blood pressure for at least two hours afterwards to make sure he doesn't have an allergic reaction.

It took forever for the stupid little bag of poison to be delivered to the oncology ward, but at around 2pm, we finally got started. The nurse told me I'd need to take Adi's blood pressure every 15 minutes for the first hour of the treatment, so we got set up with a monitor. About 15 minutes into the treatment, Adi started screaming at me to take off his shirt because it was itching. Within seconds, his screams were barely intelligible, he was sweating profusely, and scratching at himself. I don't remember how I got the nurse, but in under a minute, there were two nurses and three doctors in the room, which is never a good sign.

There was a lot of confusion in the first few minutes.

"Stop the Peg and run Benadryl, then start the Peg again."

"BP 51/29."

"Should I push the Benadryl? That might drop his BP even more...."

"Wait. Don't push it. No, wait. Go ahead. No, actually, stop it."

"It's an allergic reaction to the Peg. Stop the Peg!"

"Run the Benadryl."

"Stop the Benadryl. Run the steroids."

"BP 60/32."

"Run the fluids at 400."

"He's short of breath, check his saturation."

It's a little bit like watching an accident happen -- you can hear the sound of your heart beating in your ears and time stretches out to show you a future you don't want to see.

I kept my hands on his head, which was slick with sweat, and told him, "Mommy's right here, Adi. Everything is okay. You're such a good boy. You're so strong." And then he was asleep -- suddenly, deeply, terrifyingly asleep.

"It's okay," the nurse said, touching my arm. "He's just sleeping. He's still responding to you. It's okay."

It turns out that, even though Adi has had Peg-Asp (that's what his peeps call him) before, he somehow developed a new allergic reaction. This means that he'll never, ever have Peg-Asp again. Instead, he'll get Erwinia asparaginase. According to the protocol:

In case of hypersensitivity to PEG-L-ASP, Erwinia asparaginase should be given at a dosage of 20 000 IU/m2/dose p.i. (1 h) or i.m. every second day for 2 weeks (7 doses).
This means that our HR block has now been extended by 2 weeks, in case you missed that part. Fortunately, he won't have to be inpatient for that -- but coming into the clinic every other day is hardly going to be a picnic. And we get to do the same thing in the second and third HR blocks, too. So, hooray for that.

Adi is resting now, getting fluids to try to raise his blood pressure to a level generally associated with, you know, life. 

Guy came when I called him, and he even remembered to find someone to take Amit home from gan, which is good, because that little item TOTALLY SLIPPED MY MIND. Anyway, Guy is downstairs now, trying to find out if our Day 78 bone marrow results are here, because I'd really, really like to know if my kid needs a bone marrow transplant or not.

We were SO CLOSE to going home. We just had to finish the Peg-Asp, and then check his BP, and then leave. We were almost there. And now we're stuck in limbo again, waiting.


Mara said...

OMG, Abbi. OMG. I'm speechless.

What a terrifying nightmare. How you even managed to dial Guy's number is beyond me.

Sending so much love.

Crystal T. said...

That is horrid! I'm so sorry!! I remember watching Jack so very carefully with the Peg. I had been told it's not uncommon for kids to develop an allergic reaction to it, especially after they've had it once already. Scary scary.

How is the Erwinia administered? In the states the only alternative offered to the Peg is something that has to be given with a shot in the leg. Jane Roper's daughter had to go through that.

I hope the bone marrow results come back with positive news! You guys need some good news!!

Anonymous said...

Hi Abbii....this is Dr. Z from Wyomissing. Your dad has been keeping us up to date on Adi & your mom, but this is the first time that I was made aware of your blog.

I go to OSU at the end of this week for f/u...there is concern that my lymphoma has transformed to an even more aggressive one (would require very toxic chemo similar to that given Adi)....I have been feeling fine & don't think this is the case, but rather hemolysis due to decrease in one of my meds... Fingers crossed for all of us. I will begin my seventh year of dealing with this on Saturday, 12/28...just keep on keeping on