Dancing in the PICU

27 Sep

Immunotherapy was the hardest part of Jackson’s treatment, hands down. We began to know what to expect, but this knowledge didn’t stop Jackson from having an allergic reaction, low blood pressure, pain or fevers.

Because of the great nurses we had in the PICU, I was able to stay with him all day and night, so we were never separated and I think that helped too. Cancer moms provide comfort but also continuity of care. The same goes for all moms with kids that require prolonged medical treatment and hospitalization. I went through this again a few years later with Abby’s 104 days in the NICU.

Immunotherapy lasted from October to February, and when we weren’t in the PICU getting the infusion, Jackson was receiving Accutane at home.

Yes, I know, the acne drug. But it was found that Accutane helped mature immature Neuroblatoma cells and so it was also part of treatment.

Whew, Accutane baby was nutso. Happy, sad, mean, weepy, hyper…it was like the combination of a toddler and a teenager. But it was almost over!


In this photo, it was midnight and quiet in the PICU except for the beeping on Jackson’s IV pole. The last of that awful medicine that I absolutely loathed was beeping that it was complete and we didn’t have to do it anymore. I was doing a CRAZY dance around his room and major fist pumping all by myself. It was probably one of the most exciting moments of my life. The nurse rinsed the bag out and we have it here at home.

And Jackson? He snoozed right through it.

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