The Numbers Game

Monday was day +14. Two weeks of waiting are done. Up to two weeks left to go. When the stem cells start to graft, his blood counts will go up. So it's a numbers game right now. According to his numbers right now, we're still the underdog in this high stakes game. But we expect to come out the victors. Patience.

The last few days have been up and down like a yo-yo. One day no vomiting and limited bowel movements, the next virtually living on the commode with his poor little head in a bowl. They tell us these are generally signs that we're on the right track to grafting. It still sucks. We knew he'd have to be sick again to get well, but man it's hard to see him like this and to be able to do so little to make him feel better. 

It's not like my kid has a little stomach flu. More like every fluid in his body is trying to come out all at once and almost constantly. If they weren't giving him liquid nutrition and fluids by IV constantly I'd think his body might be so dry that he'd crumble like sawdust. And it's exhausting for the parents because you're up and down with him at least hourly so there's no rest. It's really quite amazing how our bodies can keep on going even when were so exhausted physically and mentally.

His central line has been bothering him a lot this week. His skin is so sensitive and they use different cleaning products on his line here than they do at CHEO. We've asked that they use Cavillon next time like they do at CHEO, as apparently it is possible here. Since a different nurse changes his dressing each week here, there is no continuity for them to notice these issues from week to week. At CHEO the Vein Access Team (VAT) does the PICC dressing each week. Basically we usually get one of two of their amazing team members (Lida and Julie, we sure miss you!) and they both know exactly how to do his dressing change to minimize his stress and pain.

He's also never had so many things connected to his lines at once, so they're very heavy and pulling on his arm more than usual. He can't wait to be rid of them.

His toe nails have started to fall off again after the chemo and radiation. It's more annoying than painful, but one more thing that he has to bear. He stressed about them and his fingernails falling off, so we've learned to use pieces of stretchy physio tape on them that sticks to itself and still allows skin to breathe. This way he doesn't fear tearing the nails off painfully by accident.

He had one day this weekend where he was hungry and he begged us for a pizza lunchmate. Thank goodness for Instacart! He tried it and like the many other things he's tried recently (pretzels, tortillas, hummus, pb&j sandwich, hot dog, etc.), he quickly spat it out because it didn't taste right. Chemo and radiation do a real number on your taste buds and who knows how long it will be before things taste good for him again. 

He's also gotten more plasma and blood transfusions over the past 4 days. More fluids that his body desperately needs and soaks up like a sponge. You can literally see the life coming back into his pale form as his cheeks flush a beautiful pink after each lifesaving dose.

Abby and I spent a bit of extra time together this weekend while Mario and Ollie were at the hospital. She's been interested in going to the Bata Shoe Museum to fuel her shoe fetish. I figured since it was a long weekend and people in Toronto were more likely to be at a cottage than a shoe museum, it might be a relatively safe place to take her Saturday. 

There were honestly only 7 other people visiting the museum at the same time and two staff present. No problem social distancing at all! We simply used hand sanitizer anytime we touched a door.

It was strangely fascinating, even though I'm not that into shoes, but I AM into my daughter and I love history.

I sent this quote to Mario. He replied that it should read, " A man is what his wife drives him to." He still makes me laugh after 16 years together and 13 years of marriage (or it will be on August 5th). I hope our 14th year married is way less eventful than the 13th has been. I am still grateful daily that we're doing this together, though. 

Ultimately, no new super exciting news, yet. Just more waiting and praying that he feels better tomorrow and grafts this week. Thanks for hanging in there and waiting with us.