Saturday, 19 October 2013

The waiting game

(photo courtesy ShutterBEAN Photography - https://www.facebook.com/ShutterBEANPhotography)

Seven days may not sound like a long time, but when you're waiting to hear one number it is an eternity.

Ever since Dominic finished his first round of chemotherapy the biggest question has been when we can start round two. To do that, however, his neutrophil count (that's a specialized type of white blood cell) has to be higher than 750.

It was stuck at zero until the day before his birthday, when it suddenly spiked to 300. Then back to zero. Now it's stuck at 100.

Every morning at 4 a.m. a nurse comes in, accesses his main line and takes blood. We find out the counts a few hours later.

Hemoglobin, fantastic. That's the stuff that carries oxygen around, and explains why Dom has been bouncing off the walls this past week. He's loud, proud and strolling around the whole unit in his walker. Nurses be warned.

Platelets, even better. He hasn't had any big bumps since the one that knocked his tooth back up, but if he did there's plenty of blood clotting help at the ready.

White blood cells? Well, they're good but have stalled along with the neutrophils. That makes sense because they're both the same stuff; neutrophils are just a specialized count among the white cells.
But those darn neutrophils. I talked to one dad whose daughter has AML and he admitted you have to be patient. She went weeks without seeing a rise, but it always does come.

Why don't they just send us home? Because the cells we're waiting on are the ones that fight infection. While Dom can easily go out on a four-hour pass to grandma and grandpa's house, we have to be extra vigilant that he doesn't catch a cold. So no public places and lots of handwashing and sanitizing.

We used one of those four-hour passes so that Sandra, whose business is ShutterBEAN Photography, could take photos of us all. Most of the photos of Dom are taken by me, and rarely are all three of us on the other side of the lens so this was a wonderful gift. You'll see the photos pop up on here periodically - we can't thank Sandra enough for doing it.

There's been other good news, including the fact we are now meeting with other families from Medicine Hat who are going through journeys similar to ours. Kallum, with parents Tyler and Rachelle, is next door for the week as the adorable little 3-year-old winds up his treatment. We've already learned a lot from them. You can follow their story at http://kallumsjourney.blogspot.ca/. Another family, the Gregory's, are here next week. The Medicine Hat News did a story on them too (http://medicinehatnews.com/news/local-news/2013/09/disney-world-wish-coming-true-for-hat-youngster/).

Other good news is on the financial front. The Canadian government has a new type of employment insurance specifically for parents of critically ill children which just came into effect a few months ago. Trish has been accepted which effectively means the benefits she was getting on maternity leave will continue for another six months. If you're in a situation like ours this is an absolute life saver.

We had another up-and-down day today. It started with Dom's weight going down and talk of an IV because he wasn't eating enough. It's finished up (for me at least; I have to drive back to Medicine Hat now) with almost two straight hours of him cruising the hallways and making new friends.

You can probably guess which memory I'll take with me back home this week.

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