It Settles On The Shoulders Like a Prickly Wool Coat

He’s quite tired again, already. Still pink and happy, but tired. I’m thinking this is the lowering of his ‘counts’ they keep forewarning us of. That’s another one of these words that has taken on an entirely new meaning to us. We’re quickly becoming bilingual in the language that is our new normal. As much as it creeps and crawls under my skin when I use the lingo, I need to know it. Just as I need to accept the stench of hospital living permeating every article of clothing, every pore, every strand of hair. I scrub and launder as much as I can and still it lingers with the tenacity of a skunk's spray. It’s a smell I carry with me from my days healing from his birth. This time I know things are being handled better, but I don’t hesitate to use what I learned from my experience to fearlessly assert myself when needed. It’s interesting how quickly you shed your hesitation to offend someone when it’s your infant’s comfort at stake... or quite easily in this case, his life.

It’s going to be difficult to turn well-meaning visitors away when we are home. His little body just won’t be able to cope with ANY germs of ANY kind. Our house will have to be as 'clean' as the oncology ward.

The next 8 to 10 months look like this for us:

10 days of chemotherapy

4-6 weeks of in-hospital recovery

1 week at home

Back at it again.

After the chemo is given (today was the last day of his first round), his body goes through a process of cells dying and new ones regenerating. The blood transfusions assist in this, speeding things up and relieving his little body of some major work. During this recovery, he will be extremely susceptible to germs and infection. Unlike most other cancers on our ward, this treatment is so aggressive that it truly wipes his system clean of any immunity whatsoever. Fevers and infections are a life & death matter. If he does come down with anything they hit him hard with multiple antibiotics and hospitalisation for days. They do not give him chemo if he is already sick. This is the reason for the variant treatment time. It is also for this reason that we have to be insanely cautious with whom we and he comes into contact with for the next ten months.

On a lighter note, we’ve progressed to the point of looking ahead to one, five, even ten years from now. The weight of the road ahead never truly leaves us, but his positive response to treatment has finally kicked us forward into processing and trumping this temporary life phase. I can actually see a blue-eyed, brown curly-haired little cherub with that same stunner of a smile, toddling into all kinds of crap, driving me crazy. Giddy UP!