Detours, delays and flexibility

It's summer in Saskatchewan, which means road construction. The highway we use to get to Saskatoon from home is being widened and paved, which means delays while waiting for the pilot vehicle, bumpy roads, and mud. There is also construction, houses sitting in the street, water main repairs, and all types of road work being done in Saskatoon. It seems like every few days we need to find a new route to the cancer center for our twice daily trips from Connie and Obert's house because of new road closures. We've needed to build in extra time and flexibility to our schedule in order to be on time.

It's been the same with Kol's treatment. There have been more delays than we expected, and detours from the plan. It's a very good thing that these treatments are happening in the summer when we've had the freedom to be flexible, and keep the whole family together, while we focus on getting Kol better. It feels like a full-time job. I have no clue how people can care for a child with cancer with both parents trying to continue to work (full-time or part-time), and juggling school and other activities for the rest of the family - especially if they have to travel for treatment.

The latest bump in the road is Kol's white blood counts. They were low last week, and have been slow to recover. They had recovered enough by Wednesday so that the radiation oncologist decided that it was time to continue with the craniospinal radiation treatment - which is treatment to both the head and the spine, instead of the 'boost' treatment to just the tumour area. The plan was to finish the 3 craniospinal treatments before the long weekend, giving Kol's body 3 days over the weekend to recover. However, on Thursday, Kol's white blood count was lower than it has ever been, which meant that they had to return to the boost treatments for both yesterday (Thursday) and today. That also means that there are still 2 more craniospinal treatments to finish off sometime in the next 3 weeks. The bonus is that Kol didn't need to go in for blood work this morning - just the radiation treatment.

The staff at the Cancer Center have all been very helpful and friendly and are all very capable and willing to answering questions, but if I had one complaint, it's that they aren't the best at being pro-active. I would have loved an explanation or a handout at the start of radiation that gave a more specific overview of when to expect certain side-effects (like many patients start to lose their hair after 10-15 treatments to the head), what to expect if certain common side-effects occur (like needing to come in early for daily bloodwork in the event of low blood counts), and what to do to alleviate problems if you experience them (like use Glaxo Base lotion for itchiness, or pure aloe gel for redness/burning). It would be even better if it came with all the the sample packages they gave us. The radiation therapists know when to watch for certain side-effects, so why not share that knowledge with us? I know not everyone experiences the same side effects, and not at the same time, and patients are all receiving treatments to different parts of the body, so I guess it may be impractical.  It would still be nice to have a bit of a 'heads up' though. It's good that we've had the freedom to be flexible.