Once the boy’s immune system starting coming back, it came back with a vengeance.
Jackson was pretty close to beating a record for getting out of our hospital for stem cell transplant. We were home on Day +13 – so a total of just over 3 weeks stay in the hospital! At the time, they had told us it would be a minimum of a month’s stay.
I had expected Jackson to come home and be feeling himself, but that just wasn’t the case yet. He was still weak even though his personality was coming back. I remember him standing and trying to bend to pick up toys and his little leg muscles would just tremble. The poor guy actually cried when we left his hospital room with all his things. Then when we got home, he cried the moment we stepped foot into the house. It was all very confusing for him.
It was confusing for us, too. So many emotions, so much fatigue. Slowly we returned to life as usual, playing outside some and finding fun adventures that were away from the general public. With a weak immune system, even more so than with chemo, we had to be incredibly careful.
Over the next couple of weeks, he really started to come around. Of course, that meant the oncologist was ready to book us on our next stop on the cancer treatment plan: radiation.
Radiation was done at Sentara Norfolk General, both children treated at CHKD and adults got their radiation there. It was the start of more long days.
We had to first arrive two hours before our appointment time at CHKD, then ride on a stretcher through the passageway linking the hospitals to get to Radiation Oncology at Norfolk General. There Jackson was taken into the radiation room and I stayed with him until the anesthesiologist could sedate him for his five minutes of radiation.
After it was over, we took a sleeping Jackson back through the halls over to CHKD, where he would recover from the medicine in the PACU. We did this everyday for 12 days in a row.
The new doctors didn’t know us like our pediatric oncologists did, so we had to fight a couple battles with radiation.
The first struggle was radiating the spine. Because of the size of Jackson’s tumor bed, they said we would have to radiate his spine as well. We were able to challenge the doctors enough to see if they could find an equally-effective alternative that would miss the spine. That was a huge relief because of long-term side effects like spinal deformities and growth issues.
Next, the radiation people wanted to tattoo little blue dots on Jackson so they didn’t have to keep marking him with sharpie each day for where they were treating. That was a firm NO. I didn’t want Jackson to be the only child in preschool one day sporting some tatts. I mean, if Jackson wants a tattoo, we’ll fight over that when he’s of age.
In this photo, you’ll see Jackson getting ready for bath time with his radiation marks and his AquaGuard in place. His coloring was so much better following transplant and he was chugging along through radiation. It wasn’t fun by any means, but it was a lot easier than what he’d been through so far.
Look at that mischief in his eyes. And…do I see a hint of eyebrows growing back?