Brady and I were given a day away 💜 How incredibly fortunate are we?! The moms understood our desire to get to the camper and see what we needed to do to make it work smoothly for the season ahead, and they banded together to make it happen for us. Thank you, mom and Rae, for taking care of us in this way. We are SO blessed to have you in our lives and the lives of our children!
I will tell you more about this day tomorrow. I want to stay a little more present this evening. But. Take my word for it that it was a beautiful, successful, refreshing day. So often, these quick trips in are riddled with unexpected messes to clean up and stress that is a little bit more manageable without the kids. However, today was filled with joy and success.
And a drive down to the beach no less 💜
Thank you, Lord, for this treasure of a second home. We are SO grateful.
Welp. Perhaps this is a bottom of the barrel post *foreshadowing* but I’m posting it anyway, because it was kind of a brutal day around here and I am SPENT. So rather than writing out a whole long thing, rather I will (hopefully) give you a giggle to wrap up your weekend, and that should be enough.
You know those funny time waster articles where people show the faces they find in food? I get a kick out of those. Especially the peppers with teeth. You know the ones I mean. Well. Today my bacon had a butt. They all did. And it felt worth noting.
They even twerked while they cooked. It was both hilarious and awesome.
Please don’t let this post change your opinion of me 😅 Unless its for the better, of course 😏
The name of the disability game is ADAPTABILITY! From City Hospital rehab four years ago to today, we are constantly adapting what we have to what we need it to be, changing our family norms to suit new needs, etc etc etc. Adapting always. And thats a great skill, in my opinion! Everything can be tweaked.
A big thing we are hoping to get sorted out is the bus. Since Brady lost all leg function, he hasn’t been able to be in the bus with us. And that stinks. We’ll live. We have a minivan, and can drive in two vehicles, but we so prefer to be together. We’re just that kind of family. A together family. Brady and I love the drive to the lake so much. Listening to good music. Sipping coffee. Crocheting with his hand on my knee. Its just our time to be restful together. Driving is also something that Brady likes to do as a way to provide for his family. The idea of driving separately to the lake all summer feels so sad.
Sometimes the options that are available won’t work. Or, in this day and age, you simply can’t get them! There are options for swivel seats that come down out of vehicles, but most don’t work for our bus because of how wide the door doesn’t open. There is the option of adding big ramps and lifts and whatnot to the back of the van, but then he’d have to ride back there as cargo, because we have too many people to start pulling seats out to make a path up to the front. We have someone on the case to find us a smaller lift option that would hold Bradys bum and lift him up, but its still in the works and likely won’t be along anytime soon.
Still. We don’t want to drive separately all summer. Thats not our style. So today Brady got it in his head that he was going to get in the bus. He got out there and made a bit of a plan ish. He got a scrap of wood and took measurements. I got him a pull saw and left him to it. When he was pretty ready to go, we kicked the kids inside, so as not the traumatize them if he fell. In the very beginning stages of this change, Brady fell once when he was out with the kids, and Laela has never bounced back :/ She still brings it up and is upset by it. So in they went.
And up Brady went!!!
Brady got this board to fit super nice and tight. From down on the ground, he stuck his feet all the way into the footwell, and heaved his bum up onto the board. As soon as his bum was off his cushion, I got in there and helped him stay on the board, since its not very wide and old really holds one butt cheek. Then he readjusted where he was holding on, and I pushed while he pulled, and up he went! It was easier than we thought it would be!!! What a WIN!!!
Getting back out of the van was also easier than anticipated! It makes such a difference that he has had some time to build strength in his arms and back. Because of that, he can do the transfers in two parts without rushing or panicking. He can get down onto the board, we can readjust for a second or two, and then do the next part.
This is not a permanent solution for a few reasons.
Reason number one. It is not something he can do solo. He has to have a second person who is capable of lifting some of his weight.
Much more important reason number two is skin. When you can’t feel your body, its even easier to just grin and bear it when things are hard or painful, because you can’t feel them. If you or I get a scratch or scrape, it aches for a couple of days and goes away. If Brady pulled into the van and scraped his body without realizing it, that can get out of hand really, really fast. Hello, infections. So this cannot be a forever solution.
And reason number three is his joints. Everything about these transfers has to do with twisting and reaching and heaving, and its just not good for him. If thats his main mode of mobility, his shoulders will quit way too soon. His back and arms won’t last. And we need them to. No one thinks of this stuff until they’re in this boat but man. It’s really important stuff.
But. For now, from time to time, this is really nice 💜 We can drive to the lake together! I can’t wait!
Its been an absolutely loaded day, with many twists and turns, most of which I can’t share on here! Which sucks. But I’m going to try to give you the gist.
I had to drive into the city three times today, which felt like a LOT. Cher watched Spoons and LD while I took the Peanut in for an appointment. We didn’t see our doctor today, but we saw a familiar resident, as well as another doctor on staff who I really really like. They both came in and marvelled at the Peanut, who has become absolutely enormous in the last month or so, and is a bit of a sideshow. During the appointment, however, they asked about Bradys health, and how it was impacting our family. We talked about it in detail, and the resident really drove the point home that anything we feel would make our life easier, we should ask them for. She said they really appreciate what we’ve chosen to do, even in the midst of our challenges with Brady having cancer, and they want to support us in any way they can.
Which is NUTS, by the way. Who ever gets that from their family doctor? Or other doctors from their office?! Unheard of!
Before we left, the doctor caught my eyes and asked me “What do you need from us?” I was kind of caught off guard, and said that nothing else came to mind. She confirmed “You’re making it?” I confirmed that, yes, we were, and that closed the appointment. I was encouraged not to wait if I had a question or concern, and that was that. There was undeniable love and care in that room, and neither of those women owe us anything. It was pretty amazing.
I also learned this morning that my two other drives to the city were cancelled, which was a victory all on its own. There are foster details I can’t get into, but this was something that we, along with some of our closest people, had prayed directly for. So we celebrated not needing to go into the city for those trips.
We had one more foster thing that had hung over our heads for a while finally come to fruition, which felt validating and like we could all let down a little bit in some ways? Its hard to explain without explaining it. Take my word for it. These things are hard, but at this stage of the game, while the children are young, these things make life much easier for them.
Oh here was a fun thing. Brady didn’t go to radiation today! Heyooo!!! 🥳 So another victory for us!!!
And then the afternoon wrapped up with a very sad accident quite close to our home involving someone we love. Details will also be scarce on that because its not our story to tell, but MAN. What an enormous day, with a mess of ups and downs I can hardly navigate in my brain, much less my heart just yet.
But tomorrow brings a new day ☀️ And a hot one! The pancake breakfast is happening in the morning, and then we have some willing loved ones who are coming to assemble our swing set after that. There is much to be done, and one step at a time, we’re going to get there!!
Ok. I am BEAT. Its time to wrap it up. I’m tired and my throat hurts. Goodness.
Five long weeks of radiation treatments ended TODAY!!! Yes! I said it! Brady is DONE this course of radiotherapy, and he is STOKED! Mostly stoked to not have to drive in every day, lol! But stoked nonetheless. We tried to take a selfie but it was too bright 🤣
The people working there are always SO kind and soft. Its really lovely in so many ways. Yet, as he went through the motions, each person wished him well and said something along the lines of “I hope to see you again, but not here.” And isn’t that the truth?! Its nice how good people can make a bad situation less scary.
The big question recently has been “How is Brady doing?” And really, he’s doing quite well! He’s tired, but that could also be adjusting to the new lack of mobility, fighting off an infection for so long, etc. There are many factors outside of cancer treatment. But that could be part of it. The only visible piece of the puzzle is the burn mark left on his back and neck…
… but thats pretty small potatoes, if you ask me. It will fade in time, and it doesn’t hurt him.
Probably the biggest lasting issue has been his mouth pain. I honestly don’t remember if I’ve talked about this, so please forgive me if this is old news. As you can see in the above picture, the radiation goes all the way up his neck. Refresher time! You know where the cervical spine is? Its the highest portion of the spine, where it connects to the skull. Thats high stakes up there. Its scary to be treating so high up with radiation. But 🤷🏼♀️ it has to get done!
So waaaaay up there, at C2, is where the treatment starts. Tumours are hanging around in the thoracic spine. Now, this diagram isn’t awesome because it can seem really really scary if you’re reading it. Its not so far off base, but keep in mind that Nerves are nuts! If two people had the exact same injury at the exact same spot in their spine, they would have different results!!! So. Don’t panic over all the little details.
The reason I’m showing you this, and totally over-explaining it, is to show you that the cervical spine goes up so high that the radiation is affecting Bradys throat and mouth.
He has a sore throat.
He has mouth sores.
He has no sense of taste.
He has tongue pain.
Its like an endless mess of a cold, and these pains and discomforts came on the tail end of a really nasty bout of strep. So, he has started rinsing with that product you’ve all heard of that is not uncommonly used in cancer patients – magic mouthwash!! It relieves so many things, and while it doesn’t make any of it go away (except some of the sores!) it helps make it more manageable. However, that pain is supposed to kick around for another two to three weeks. But knowing there is an end in sight helps a little, I think.
While the mouth stuff has been a gigantic pain (both literally and figuratively) he is weening off the steroid they put him on in the beginning of radiation, and he has ten days free from the cancer centre!! After that, he’ll meet with the medical oncologist and get a schedule for chemotherapy. We know what to expect, we just don’t know when it starts. But we can talk more about that another day.
Tonights plan is to eat after the kids go to bed. Poutine, I believe. Hopefully he can taste it at least a little, and if not, the texture of the fries will help, lol!
I’m SO grateful that cancer treatment exists and that the sickness can be helped in many cases. But I also am SO glad this portion of it is over.
Dekker wasn’t feeling 100% this morning, and wasn’t hungry for breakfast. I have some Fairlife in the fridge, which we don’t consistently have, but I bought quite a bit a while ago when my boys with ADHD were struggling with appetites, so we have some on hand. I offered him one and he came to join us at the table for morning meeting.
I started teasing him right away as he tried to keep his face out of the sun.
It was during his milk breakfast that I realized he has no clue how to drink these things 🤣 I teased him about a consistent milk moustache, so he changed methods.
He had us all laughing as he struggled 🤣
Dekker: I’m bad at drinking milk from bottles.
Me: You definitely knew how as a baby…
Rowan: It was because he had a nipple.
Dekker: 😏 I still have those.
🤣
My kids, ladies and gentlemen 👏
Hope this gave you a little chuckle before your day began!
This morning was BEAUTIFUL and PEACEFUL and RESTFUL, thanks to Cher and the gift of time away that she gave me! I crocheted and had a soak, and she even made me toasted tomato! I am SO fortunate!!! This afternoon and evening, however, has been BUSY! I picked up the kids from school, late, of course 😕 Late is not a way I like to be. But alas, I was.
We drove to Warman to pick up some materials from Zaks, which was where I realized we still had the winter tires in the back, therefore meaning I could not pick up the materials. Ugh. I grabbed as much as I could, and figured the rest could wait for another day. Then I went to our eye care place and picked up Rowans latest shipment of contacts. Aaaaand then since we were a little ahead of schedule, we picked up supper around 4:30 and headed into the city to bring Spoons to a visit. We made it even a little bit earlier than anticipated so we went and got a box of smile cookies for their visit and for us, as well. Poor dilapidated smile cookies, haha!
We dropped off the baby and headed to Value Village to see what we could get into for the next season.
One hour and $200 later, we had a huge haul of tshirts and tank tops for all five kids, a blanket, some Barbies, and a couple of pairs of shoes for the kids, and only one mug. Laela and Wavy got dressed for a very precious grad party coming up in May, and they feel like total rockstars!
We did NOT come home with these, though I’ll admit I was tempted 😅 Its good that they don’t fit anyone in my home currently.
Hahahaha! What knockoffs?? 🤣
We left the store with two big bags in hand, a baby in a bucket, and one proudly on Dekker’s shoulders. How I ache to show you those pictures! 😩 You’ll just have to take my word for it that it was SO cute!
We got home after the visit, and I dropped Dekker off at youth. Its a senior night, but the junior high kids were invited this time. Then I got home, and got 2/3 babies to bed, as well as a couple of the remaining kids tucked in as well. Laela practiced piano while Rowan read and had nigh night snack of whatever meaty leftovers he can find in the fridge, lol! Brady had a shower, and the Peanut kicked on the floor for a while. Finally, I got the two middle kids to bed, and fed the baby to sleep. Dekker will be home a little later.
I am beat. But, I quickly will type this out, and then I will roll up some super tangled yarn in hopes of crocheting some more tomorrow. And I will eat a snack, not because I’m hungry, but because my throat hurts a little and needs a scratch.
Whew! What a day! A really GOOD day! But a GOOD day that would greatly benefit from a GREAT night to follow 😅 Sleep well, friends!
It was a tough one for the kids this morning. They were TIRED.
Note the blanket lines, lol!
Wavy didn’t even wake up when everyone got up and went to breakfast. Laela tried to lull her a little but she was out cold. They all ate super quietly, and once everyone was done, Dekker went and woke her for me. She was SO groggy. I told her not to rush, but just to get ready and she could grab a granola bar on her way out. She was happy with that.
They headed out, and the day began here. I had so many lovely people come through my home today, ALL motivated by their desire to help our family in different ways. It was incredible. I also spoke to social workers a handful of times, and texted back and forth with Brady a little about some things I need him to check at work in regards to camp, home, spring, etc. I made some lists for camp and made notes of things I have to figure out before we go. I ordered a couple of things from Amazon and I’m currently printing off about a million expense forms. Ok not actually, but I am indeed desperately behind 😅
Ah well. Onto the next. It was a good day. A full one, but not a chaotic one. The school day is done. Most kids are home. Some are heading out to do other things. Some are crying, others are not. We are a tired bunch, lol!
Once this printer finally stops, I need to get the babies up! Will have to work on the actual expenses another day.
The backyard is a looming detail for us. Its not too terribly large when you look at it, but its looooong, and mature, and filled with flowers, which the previous owners had a LOT more time for than we do 😬 Sorry, guys. It’s just not going to stay quite so nice.
My mom is a great motivator, and she offered herself to us to help get some of the wood sorted out in the backyard. The wood pile was really messy in the backyard, which was a necessity at the time. It was moved from the old place to here in a rush between Brady’s seizure and the new owners taking possession. Wasn’t our best time, lol! So the wood pile is a scary place for things to live, and it was in need of a tidy.
I know. Gorgeous, right? Brady and I had bought a firewood rack before we even moved here, and then never got to stacking it up for obvious reasons. So today, we did that! I got the rack finger tightened, and Dekker finished it off.
And we got it in place and weighed it down nicely with our stash of firewood.
Looks great, hey?? SO much nicer!!!
There is still much to do back there.
Without sounding too brutal, we have to till out some of the flowers 😬 They are EVERYWHERE and last year they all came up with enormous weeds, and looked awful. I felt awful every time I saw them. It just isn’t something I can keep up with. So we need to find a little tiller and take as many out as possible. I’d love to keep the peonies. And the raspberries. I’d love MORE berries! But I don’t want the flowers. Sorry, guys. Not for me. But if you have raspberry canes taking over your property, I would happily come take some off your hands! Please and thank you!!
There is a whole big section that was a garden once. I want to garden. I really do. But again – time. I just don’t have it. I’d love to seed in that empty section and make it soft and grassy as well.
We have at least one big branch to hack off one of our backyard trees.
We need to build our swing set and move our picnic table.
And we have a nice big stack of wood that we can burn, but that is full of nails and screws and whatnot that I might rather have hauled away. So I’m still thinking on that. We’ll see. Its usable, but its a mess.
I think thats the bulk of the work. Most of it is doable. The biggest part of the work that NEEDED doing has been done. The flowers will feel daunting again soon, but so far everything is still pretty dead and thats ok with me, hahaha!
Thats it for me today. School starts tomorrow, and there is much on the books already for the week. Time to let down a little bit.
Here’s a weird one for you. Consider yourself warned, as there is talk of wound care ahead. I’m not offended if you stop reading here, I promise. You can catch the next one. No hard feelings.
So. Brady has two wounds on his back, right? A pressure sore in the centre, and cellulitis ulcer off to the left side. With the IV antibiotic treatment, the infection started to lift on the third day, and once his body wasn’t producing any more pus (I warned you!) it became clear that his ulcer had tunnelled under the skin. Our doctor asked for a picture and immediately knew we would need help. It needed packing, which means home care visits every single day, including weekends, until it was healed.
What I mean by tunnelling is that its not just the sore thats visible, but it has a whole pocked underneath the skin. It can’t just close up normally, and we don’t want to leave that open pocket in there to breed further infection and all that fun stuff. What I mean by packing is filling it with something safe that keeps it nice and clean, and slowly slowly, it will start to heal on the inside, and we will need less and less packing, until finally its only the visible opening left, and then it can close up properly. Its a lot of work to get it closed, but its working 💜 Thank you, Lord!
Fun fact! Or, possibly not fun, but, fact! If you’ve ever had dry socket in your gums after having teeth pulled, they pack it with the same stuff. It tastes awful, I can confirm 🤮 Horrible.
But!
It smells CLEAN!
These days, when we’re laying in bed, and Brady leans forward, I catch a whiff of the packing. Its coated in iodine, and its a pretty strong smell, but it smells SO clean. It smells like success! Lol! Its so odd, I know this, but when I smell that smell, I know he’s getting better, and it brings me so much comfort and relief!
Triggers are weird.
Anyway, for you nurses out there, Bradys packing has gone from 45 cm down to 20 cm!! That is HUGE victory!! Over halfway there!!
