We now have 26 weeks of treatment under our belts! There was a week delay getting week 25 underway because of low counts. That is to be expected at this point in the game but the realization that we are so close and yet there could theoretically be several more weeks of delays pushing our end date farther and farther away was very deflating. Although we have been tremendously blessed to have a homey place to stay, which has made our temporary displacement tolerable, we look forward to being back in our own home. The anticipation of wanting to get back to routine and a life that doesn’t revolve completely around hospital appointments. Nick walking to work, walking the dog, piano lessons, homeschool, play dates, attending our home church. Not worrying about hospital visits for fevers or being around groups of people when counts are low. Not being able to plan things because our day could flip upside down with no notice. But we have no control over the delays. We support Nico’s body by providing good nutrition, avoiding certain foods, supplementing as needed, getting fresh air, sunshine, exercise, staying hydrated and getting good rest. We try to do what we can with what we have available to us and so we have to roll with the delays as they come and make the best of them. This last delay allowed us to go check out the local aquatic center. In Canada they have really nice community centers with indoor pools that are open year round. Swimming is always a winner with the boys.
We were also able to go to Camp Hope for the second Sabbath of camp meeting. It was really nice to run into a lot of our friends from back in Lillooet and get to explore the lovely campgrounds. In the end, it all works out. Something to remind myself in the moment where it all cumulatively seems like too much and too long.
The first couple days of his five day chemo started out rough. We are so thankful for the prayers that were sent up for us! The second day (after a couple episodes of nausea and vomiting) his oncologist prescribed different anti-nausea med and it really turned around the week. Nico didn’t have any nausea after that and although his appetite wasn’t very good he was able to eat here and there and keep it down! A couple months ago we had purchased groupon tickets for an airshow in Abbotsford which was this past weekend. At the beginning of the week we didn’t know if we would be able to go but we were able to and it turned out to be a much bigger deal than we had anticipated! The boys were impressed with how loud some of the fast jets were. Nali on the other hand did not care for them. But she did well and slept most of the time in the baby carrier.
At the beginning of September, Nico will have some more scans (MRI and PET) to check the tumor area and see if there have been any changes. Up until this point Nico has always been sedated for all of the scans excluding a CT scan. The scheduling person for the MRI asked if we would be interested in having Nico try out the MRI simulator to see if he could potentially complete his scan without having to be sedated. He will be seven in a couple months and we thought it wouldn’t hurt to have him try even though we thought he would be too young to be still for 30 minutes. So we were pleasantly surprised when he passed!!
We currently have another break. Nico’s next chemo is scheduled for the 27th. (Although we still have to go get bloodwork on Monday to check his hemoglobin and make sure he doesn’t need a transfusion.) His next one will be his VAC chemo which is an overnight admission to the hospital. (All dependent on if his counts are ok.) Some of you may have noticed that Nico’s head has quite a bit of fuzz that has grown back. That is because he has not had the Dactinomycin chemo since the end of April. They omit this chemo drug during and for six weeks after radiation. So some of his hair has been able to grow back but it will fall out again.
These scheduled breaks have us trying to figure out what to do to maximize and enjoy the down time. Nick and I would like to take long naps everyday but the boys don’t seem to find that enjoyable for some reason. There is an opportunity for Nico to attend a local church’s day camp next week where the theme is woodworking! He’s excited about it!
17 more weeks left! Many thanks to #teamnicocourage. ❤