We are at the end of the third week of Chemo and radiation. The infusion has had the unfortunate side effect of acne pustules all over Joshua’s face. So we’ll be asking about what to do about that at tomorrows infusion. Otherwise, Joshua is getting tired and somewhat crabby when he’s not had enough rest.
Aunty Tania has been hunting down things to do left and right, and helping out with meals (thanks sis!) and thanks to Julia Bechtel’s wonderfully kind donation of her truck for Tony to use for a bit, Tania has some wheels to help out with taking Joshua over to radiation a couple of days a week. Hopefully she will take some time to sightsee a bit in Denver while she’s here, too – she jumped from a big project to helping us for a few weeks.
It seems strange to say it will be a bit of same ‘ol same’ol this week. But we are starting to get into a sort of routine with it all.
We’d like to thank Highlands Ranch Dental Care for the pair of tickets that took Tania and Joshua off to see the Bronco’s / 49’ers game last night. They got to go down on to the field before the game and see warm ups too.
Low key day for most of the day for Josh after his second infusion yesterday.
He’s starting to get more tired – slightly woozy perhaps – after the radiation treatments (this week is week 3).
Tonight was our family photos shoot with Ms. Sue. Thought for while there we’d have to reschedule due to wind and low light, but I think we did okay with the help of a well placed reflector now and then. Can’t wait to see how they turned out after all the debate over what we should all wear.
So that’s one thing off Joshua’s bucket list! Aunty Tania is busy hunting down and organizing some of the other items while she’s with us.
This week has been… Interesting.
Joshua ended up off school Tuesday and pretty much all of Wednesday too. Just feeling generally crappy – slept for about another 4 hours both days.
Organizationally, I, on the other hand have apparently been a bit of a mess. Forgotten handbags with phones in them (of course when Joshua and the school were trying to contact me), then today a flat tire when I was already running late because of work and forgetting my wallet.
Finding out this was the first of four tires about to fail did not make my day. Discount Tire got me hooked up with my spare and have 4 tires aside to fit first thing tomorrow. I’d planned on new tires by the end of Autumn, but all this driving meant that ‘end of autumn’ arrived much, much sooner after at least tripling my daily mileage.
Aunty Tania arrives from New Zealand tomorrow, then on the way home from the airport is radiation and clinic.
We would like to give a shout out to some folks at ICS Denver – Shane and Julie, Dorothy and Rob, Kami, Patricia and Levi who have helped us with meals the last couple of weeks. And also to the management at ICS who have booked a photographer to take the family photos Joshua had put on his bucket list.
We’d also like to thank Dr Lynelle Zabel , Tony’s dentist who out of the blue donated to us a pair of Broncos tickets. We decided Joshua and Aunty Tania get to enjoy those!
And we have to thank all of you have donated to Joshua’s bucket list funds – a drive in a Lamborghini and a hot air balloon are on their way!! We have been absolutely humbled by the support from strangers willing to help us make experiences available to Joshua.
Joshuas feeling a bit trippy still after the big dose of Benadryl yesterday, so no school today and a few more hours in bed instead.
Josh has taken rather well to all the different medicines he’s had to take – but the Cetuximab (Epidermal growth factor receptor inhibitor) didn’t take quite so well.
But a big, quick dose of Benadryl and hydrocortisone into his port and 10mins later we are off and running again.
But no more after radiation infusions for us, they will have to be pre radiation and run nice and slow.
The first week of radiation and chemo AND high school is done!So far, Joshua is none the worse off for any of it all, except for the definite need for an afternoon nap… No matter how he tries to deny it! Momma knows best!
We had our interview with Make a Wish on Saturday, and now Joshua’s wish goes to the committee for review. Nicole and Barbara, it was very nice to meet you both!
This week will see us to Oncology, where Joshua will have his first Cetuximab infusion. This will be the longest of them all as they go super slow in case he reacts to it. So it won’t be a quick radiation visit on Monday. Then our regular routine through the week until Friday where we get to add a trip to the airport to pick up Aunty Tania!
Thank you, EVERYONE, for your donations. From those of you who have donated at the Go Fund Me or Give a Little pages, to those who have donated time in the form of meals to help us out, to those who have donated good thoughts and wishes our way!
Thank you! Thank you! Thank you!
He’s in, he’s out…. The drive there and back takes about 6 times longer!
‘Power’ Nap between school and radiation today though. He’s a bit more tuckered out that he realizes at times.
Well, Day 1/42 of Radiation and chemo that is
The last day of ‘summer’ usually is somewhat bittersweet for any person still involved in schooling. The last day of sleeping in, doing nothing, playing around, soaking in the sun, leisurely meals or coffees on the porch with no looming deadline of ‘have to be somewhere now‘.
This year is particularly bitter versus sweet as tomorrow is not just Joshua’s first day of High School, but his first day also of radiation and chemotherapy. The first day of the next leg of the journey to kill this thing growing in Joshua’s head.
But today we’ll prep just like everyone else: washing clothes, packing supplies… replacing the duct tape holding the laptop together… 🙂 We will just have to add a couple of extra things to do: prepping meds for the next week, cleaning and packing supplies in to the car for the trips everyday to Children’s Hospital (or more exactly University Hospital Oncology), prepping bath and bedrooms just in case nausea hits really badly…
But first, it’s a beautiful day we might go rejoice in it for a little bit … Won’t be quite as nice as the view of the mountain meadow in the picture though 🙂
I was disappointed to find out at school today that the high school counselor didn’t know about Joshua’s situation yet. But, this is a crazy time of year for them being the week before school starts, so I do tend to allow a little slack.
But despite all that, I’m very impressed. The counselor has already called me back with a modified schedule for Joshua starting on his first day that will allow success rather than failure, and is setting up a meeting of relevant bodies to sort out our game plan. And she’s also letting all the teachers know what’s up so if they see something unusual they know if that’s a good/bad thing.
I’ve been very unsettled about the whole concept of school etc, and this eases that no end.