The Daily Hailey

I don’t know how to make this post eloquently so I’m just going to lay it all out on here and hope it reads ok

Sometimes its hard to post about whats going on when there is still so much up in the air.

Sometimes its hard to post what we need when we don’t know yet. Not only because our brains are still super swirly with all the new information, but also because Bradys’s function is still changing, so we don’t know what the end result will be and, therefore, we don’t know what his needs will look like.

Sometimes its hard to post because you are all SO QUICK on the draw to jump to fulfill our needs, which is incredible and humbling and just something I don’t even know what to do with It is truly a beautiful problem to have, believe me. I get nervous to post for fear that people think I’m hinting when I’m not.

Anyway. Caution to the wind. I can’t be bothered to sift through all of the details at this point so I’m just going to throw a bunch down.

Get ready.

Before all of these changes, Brady was meant to start up another chemo cycle this week. Tuesday, specifically. However, its been made clear that the course of chemo he was on was doing all kinds of squat, so we were told the plan would change. His standard pre-chemo appointment is today, so hopefully he actually sees his oncologist instead of whoever else, and hopefully they did, in fact, make a new plan. Not sure yet if he’ll do the five day cycle like he’s done for the last six months, or if they’ll do chemo daily along with his radiation like they did freshly after his brain surgery. Radiation is also supposed to start this week. We fought ALL last week to get things moved up timewise, and his current first treatment is on Thursday, but they did say last week they were hoping to get it started on Monday or Tuesday. So we should know today what the plan is for both schedules and treatment plans.

With Brady’s changes in function, his mobility is super different and a lot less. He has no use of his legs anymore. Like. None. He no longer wears the leg brace that helped him stand. He cannot stand at all. He cannot bear weight at all. He can’t sit up unsupported for long at all. His abs have quit. His legs have quit. His bladder and bowel function has also changed, so he has new supplies and systems in place to make that all run smoothly as well.

So with the total inability to stand, much is changing in our life. Brady got the last of the drawer handles placed in the island yesterday, and I’ve been reorganizing the kitchen so he can reach as many dishes as possible. No more wall cabinets for him! Today I’m hoping to move around the pantry so he can reach more things.

Ok. A couple of big dreams.

Getting Brady into the garage. Right now he goes down the ramp in the front and around into the garage, and that works well, but we definitely want him to be able to go into the garage. So we’re looking into funding through some programs to see if we can get a garage lift installed. If so, we’ll need to rebuild the entrance platform in there also, as it is not even close to level with the door. If and when this time comes, we need to clean out our garage. Lots will need to be hauled away, like the giant wood box the stove came in, and some old cabinets. We’re not quite ready for that. Warm weather will help.

Renovating our bathroom. This may not go down anytime soon, but as I said – it’s a dream. Brady can barely get into our bathroom. Its so teeny, which was fine when he could walk, but is next to impossible to make work when his chair has to come in with him. The chair takes up the bulk of the floor space in there, so getting to and from the toilet or the shower is REALLY challenging. It can be done, mostly, ish, but the dream would be to get a smaller vanity, move the toilet, and put a bunch of storage above the toilet. We can’t lose all the storage space, since Brady has lots of med supplies (ie catheters and everything that comes along those) that need somewhere to live. So. Thats the dream. New en suite.

Modifying our bus so Brady can get into it. I mentioned this yesterday. It is a lofty goal, but I do believe City Hospital rehab will have ideas and resources.

Smaller dreams.

Some accessibility things. We are thinking a LOT about the lake and how different its going to be. There are a few things that will make moving around on the gravel easier. A Freewheel is a pretty cool thing that I think we’ll bite the bullet on sooner than later. It lifts up the castor wheels in the front of the chair, but is still self propelled. The castors are what get caught on everything and have people falling out of wheelchairs. Brady also needs to order armrests for his chair. They would make transferring out so much easier. And grab bars/rails/handles to install in vehicles, also.

Needs.

We need to put grab bars up in the house. We have them, we just need to pick their spots and install them.

We need a railing on our front ramp, but that will come a little later after *drumroll please* our ramp is redone! Thats a gift we’ve been offered, which is gigantic and humbling. When the new ramp happens, so will the railing. We have purchased some of materials for the railing already, but since it will be much longer in the nearish future, we’ll have to snag some more soon. Thank goodness they stock it at Zaks!

We need to finish up the whole stove project, which was SO fun at the beginning and now just feels like something dragging :/ Which SUCKS. We have a range hood on order and when that comes, we have willing hands ready to install it and finish up the project. But man. Its a bummer its dragged the way it has and it feels a lot less fun now. Ah well. Still incredibly grateful for it Not every detail has to be exciting or thrilling.

Brady needs to finish the winch system he started building in his minivan. He had help getting it going, and he will absolutely still be asking for help to get it finished. Just have to prioritize.

Oddly enough, we need a wheelchair Hear me out. We had a loving friend come and get our stair lift installed and working, which is HUGE. Brady can actually be in our basement again. He could even tuck in the downstairs kids! Except that he can’t move around once he’s down there! We could haul his chair down, yes, but our stairwell is quite narrow and the lift is a decent size, so it would definitely be a job for a second person, and it may even need to be disassembled to get it down there. So the hunt for a basic folding wheelchair is already on! I’m on FB Marketplace every day, and I’m sure we’ll find one soon enough.

Ok. Thats all I can think of for now. Its a lot thats swirling in my brain, but now its all in one place, lol! If anyone has any bomb ideas for making life more accessible, please feel so free to throw them our way! We are not above spitballing. We are not too proud to hear from others! Positively everything in our life is about adapting right now, so throw out your best ideas! We need them and want them!

We have caught a batch of whatever sketchy illness is floating around, it seems. Not all of us, thank goodness, but for sure three of us. A couple of the babies, and Wavy. We stayed home from church this morning in an effort not to spread our germs, and to give everyone a chance to rest up and not get sicker.

Today held minimal productivity, a few cups of coffee, and a lot of baby snuggles. I discovered Dekker can give me decent piggyback rides, so I definitely took advantage of that a few times. I crocheted a little bit at one point. And we even had salad with supper. Dekker added sprinkles to mine.

Weirdo. I wonder where he came up with that idea.

Brady and I went outside this evening for a few minutes and speculated how we will get him into the bus. He hasn’t been able to be in our vehicle for the last while, and we don’t like that. We vastly prefer to travel together.

Howeverrrrr…

Brady got reconnected with City Hospital, and he gets to go meet with his original physiotherapist back from rehab days! We are SO grateful to be back in contact with them, and all the resources that will come along with it. The beautiful thing about the rehab program there is that, once you’re in, you are always welcomed back. That means the gym, PTs, OTs, social workers, etc. Part of therapy there will be figuring out how to get Brady into the vehicle, and if he needs some mobility aids to make it possible, they will be the ones who know whats out there, and what can be applied for, and then THEY will apply for it! Which is AWESOME, and crazy helpful!

We are so thankful to have Brady accepted back in to see his PT from four years ago What a huge gift. Hopefully helps is on the way and we can be back to driving together sooner than later!

Also, cancer treatment should start up before long. For sure this week. For sure radiation. But we’ll keep you in the loop with that also. When we know, you’ll know.

Thank you for carrying us in prayer It makes all the difference.

Gonna be a big week!

It was a bit of a bizarre day. We are a “spend the day together” family. Today felt like an odd one, for whatever reason. I think a big part of it was actually the fact that I had to be gone for a few hours and Brady was home with most of the kids. He had the big kids, so he had help with the babies if he needed. But I took Rowan into the city for parkour, as well as a baby to a longer-than-average visit. I was gone ALL afternoon. This was new territory for us since Brady’s mobility has changed and he lost his ability to use his legs at all.

But! I intentionally kept busy. I dropped Rowan off, and then the Spoonful. I bought lunch. I drove to Michaels at Preston Crossing to buy one ball of yarn to incorporate into Peanut’s blanket. It felt super wrong walking out of Michaels with one ball of yarn. One. Singular. I have a particular yarn there that just STARES at me. I ache to make a sweater out of it for myself. But I haven’t bit the bullet yet because its too much money. I still went to look at it, though. Just to hurt my own feelings.

I also drove to Lawson Heights and dumped off a TON of cardboard at the recycling depot. I’m taking ALL kinds of boxes from groceries and meals already brought, plus a tv box. Its easier than hoarding it in the garage and ever so slowly sneaking it into our already full bin.

I picked Rowan up, and we killed the rest of the time in Saskatoon at Value Village. I got the kids some books they really wanted – trying to bulk up a couple of series that they’re into – as well as finding myself a mug (duh) and a sweatshirt (also duh) since I don’t have enough of those items. Don’t worry. I’m rolling my eyes at myself.

We went to pick up the Spoonful, and baby’s birth mama had bought me a gift! ME!!! We hugged good and proper before she handed me her baby and we parted ways. I can only imagine how it feels to be on her end of things But, I digress.

After arriving home, we had a bit of a whirlwind evening, with 2/3 babies feeling quite sick. But once they were down and everyone could hear themselves think again, we snuggled everyone else up in the living room and introduced our kids to Mr. Bean Good, old fashioned, OG Mr. Bean. And MAN did they laugh. It was incredible. We just watched a couple, but it was so so funny to see them doubled over. Dekker and Rowan were belly laughing straight out the gate. It was absolutely hilarious, and a fantastic way to wind the day down

There are still things to do before the night is done, but I so anticipate dozing off to old episodes of “Mad About You” with Brady. That is the coziest time of the day. I am SO grateful.

I can barely put this week into words. There have been some pretty low dips, but a complete tidal wave of kindness and support from our loved ones. Both have come in extremes, which has been a whirlwind to navigate, but I honestly could not be more grateful.

I imagine I will never be able to put my finger on the reason why we are so well supported. Why our story reaches as wide as it does. Why we seemingly have bottomless support while so many are without. There is some sort of survivors guilt attached to it, but I know that guilt is not from God, so I work intentionally not to dwell there.

We have spent the week waiting for an appointment that didn’t come. We made small headway towards the end of this week at least, and hopefully there is betterment in the week to come. While we have waited, we have been positively showered with love and care and thoughtful gifts we never even thought to ask for. So maybe around us are truly searching for ways to put into our family. It is incredibly humbling.

The list of people who have helped is already frightfully long, and I know for a fact there is more to come. I have confidence in Christ more than anything or anyone else. I feel like He continues to send people our way, and His gifts to us through them. Baked goods are showing up, since the world knows our children lives off of muffins for breakfast. Lunches are even good to go for a nice long while. And suppers are coming regularly. Not to mention help with the house, with rides, with the kids, and aaaaall the grace from everyone around us when we just simply cannot keep up.

Lots of change still to come. Next week, we will have more to share on Bradys treatment plan and how its all going to go. For now, we really hope to coast a little bit through this weekend.

Specific prayer requests, for those who want them!!!

That Bradys function either maintains or even improves!!! No more decline in his mobility or function!

Spiritual protection for our family, specifically our children! The battle is ON And we are feeling that burn.

Heavenly intervention in Bradys course of treatment, and that the oncologists make the right calls to give Brady the BEST quality of life!

We trust you, Lord. No matter what, You are good!

What a week.

You know when a day REALLY feels like a particular day of the week, but it is not actually that weekday after all? Am I making sense? Well. Every single day this week has felt undeniably like a Friday to me. Perhaps its the degree of general fatigue that comes from all the mental and emotional weight carried, or just a general disorganization of thoughts. Either way, it keeps feeling like Friday, and it keeps not being Friday!

However, tomorrow is finally Friday. And I am so ready for a weekend. Tomorrow, Cher will come clean in my house, and we’ll spend some time together. Another friend is stopping by after school. We never do homework on Fridays, so thats another thing to anticipate. And hopefully, everyone is doing well, and we can have a movie night as a family.

To be clear, I am not trying to complain. Sure, the week has had some disappointments. That is a fact. Times are not easy. But there is absolutely NO shortage of love and support coming our way. Almost more than we know what to do with. We feel so undeserving, but it is just a good reminder to be generous in the seasons where we can be, and to be humbled in our seasons where we have more needs. I think each day this week, we have been approached by people who want to shower us with love and support, often fulfilling very real needs, many that we haven’t even had a chance to voice. We are overwhelmed with gratefulness. Thank you, all, for listening to the pull and for loving us.

God is sending His people to us. Whether they know it or not.

We are not unable to do Your work, Lord. Even in times of trouble, we are here. Send us also.

Happy almost real Friday

The kids felt super encouraged after festival. Thank you to everyone who built them up and celebrated with them! I got Laela and Solly each a stuffed toy to celebrate their accomplishment, which was small and possibly insignificant, but they were into it, so I’m calling it a win.

Solly’s goat is named Professor, after Dr. Dillamond in Wicked.

Laela’s bunny is named Moose. Just because. Moose grew a beard this morning.

Another story. Dekker got to pick up his new glasses today! He didn’t pose very nicely for a picture, but he feels pretty fly in them. I told him he looked handsome, and his response was “Ooo! Yup, I do!”

They have a little red polo guy on the side. He is so grown up these days.

Last update is regarding Brady’s health. His Monday appointment at the cancer centre was very disappointing. As it turned out, when he went to get his cervical spine scanned, he learned that his oncologist changed the course of treatment completely, without Brady’s knowledge or consent. When Brady questioned the technicians, they called the doctor to get confirmation and he basically said to scan the entire spine, and he’d made a plan over this week.

Meaning no radiation this week :/ Treatment isn’t meant to start until well into next week.

Meanwhile, Brady is waking up each morning with less mobility. His condition is declining every day. And we just have to wait. It is positively brutal to watch, and I imagine quite miserable to experience as well.

Meals began to make their way here today, among other things. It is beautiful to observe how many people are so willing and even eager to put into our family. I don’t even know what to ask for, but I know many are chomping at the bit to meet our needs It is wildly humbling. Thank you, all, for all the ways you are caring for us in this time of our lives. There is much uncertainty, but there is peace in Christ, and much comfort from His people.

Whew. Ok. I’m tired now. Kids will be home any minute from clubs, and then I’m ready to hit the hay!

Some people may be thinking Coachella, or maybe jazz, but I mean kids playing practiced pieces on a grand piano in front of adjudicators. Piano festival was hard for me as a kid. I never felt quite as polished as I should’ve been, and I never ever got a piece perfect. But such was life, and I did it anyway. It was a good exercise of bravery. I have no bad feelings.

When talk of festival began this year, I decided that my two piano players should join in. One – Laela – loves to perform. And the other – Solomon – has some pretty decent anxiety, and I knew it would be something that would really challenge him. So their teacher signed them up for a duet together, as well as a solo piece each. Specifically in “first year of instruction” groups.

A fun development is that, with a change in medication, Solly has virtually no anxiety. Like. None. Its SO incredible! So as the date for his pieces crept up, both kids were excitedly anticipating them!

Duet day was Sunday. I didn’t attend, but I heard the mournful tale of the kids getting stuck on the last two lines, rallying, finishing strong, and Solly crying crocodile tears as he walked off the stage The adjudicator was SO kind and gentle in their comments, and they walked out with an A-. Both kids were elated that they had come out so well!

So both of them were completely unphased and ready for action when the next slot came up. That was this morning. The kids left for school, Rae come to my house to be with the babies, and I took the two to the church for 9:00am.

A couple of small groups would play their pieces, with the adjudicators writing notes in between, and then they called all the kids up to have their comments read and explained, and then they were done, and the next couple of groups would begin.

Laela was only in a group of two. Both girls played really beautiful pieces very, very well. They were both really well practiced. In the end, Laela took second place at 85%, with the other girl surpassing her by only 1%. This was a great result! Laela was thrilled to get a certificate.

Solly played in a group of three boys. His song was a perfect pairing for him because it was full of bouncy staccato notes. He played his song better than I’ve ever heard him play it. At the very end, he seemed to lose interest and he stared off into space for a moment but somehow he did not miss a beat! His bow was intentional and stinking adorable. And lo and behold, he took first in his group of boys with an 88%! I saw virtually no reaction until he turned around to come back to his seat, and he was wide eyed. Completely beside himself!

This event was a total success for our family. A confidence boost for both kids in their first year learning a new skill! Thank you, Val, for being SO good to our kids, and encouraging them the way you did before they hit the stage You facilitated a beautiful memory today.

Another day has passed, and we continue to hear beautiful stories of prayers being offered on Bradys behalf. Keep them coming, please! In fact, we even learned this afternoon that we had been mentioned at our other local church during their prayer time, and that we were prayed for by the congregation.

Not to make it too awkward, but this was particularly honouring, as we used to attend there, and made the difficult decision to change churches a couple of years ago. You can imagine how uncomfortable that might’ve been in our small town setting especially. So to know that there are still people over yonder at our “old” church who still care to hold us dear means a lot to us and our family

After a particularly disappointing appointment this afternoon, Brady and I are feeling emotionally spent, and this is really all I have to offer the blog this evening.

Don’t get me wrong. God is still with us. There is still peace. God never fails. But WOW! Flesh sure does! So keep pounding Heavens gate with prayer and petition, in Jesus’ name, on Bradys behalf. We covet your prayers. We NEED them. They are absolutely ALL we have to hold onto at this time.

I really cannot say more lovely things about today. I am completely beside myself with exhaustion, as it Brady. But the day was completely beautiful.

We made it to church. Two of the babies who never stay well in nursery stayed without crying, and I could be in the service with Brady and the other kids. As the service wrapped up, people gathered around our bench, laid hands on us, and prayed for us all. Brady and I cried the entire time, as did many others. When the prayer was done, people lingered and held us, talked to us, listened to us, and offered much willingness to help, support and put into our family. Such warm acknowledgement and love between many shared tears.

As tends to happen, we were among the last to leave, but it was nice to connect with as many people as possible.

We stopped by a friends house for some backup med supplies after church, and got in a short, really lovely visit before heading home.

My mom came over, and we all ate sandwiches on fresh baked buns from a loving neighbour for lunch.

Braden came over for the afternoon, and got our stair lift working! This is a HUGE win, because Brady will now be able to go back downstairs for movie nights, tuck ins, and whatever else needs doing in the basement of his own house. It makes such a difference for his independence and normalcy. He also stuck around and brainstormed about some really important projects with us. What a gift to have someone willing and available to put some real time and effort into our home, and getting some things fixed up where we need them to function better. We are SO grateful!

My mom brought food for supper, so we enjoyed a crazy delicious meal of sausage, potatoes, corn, and gravy. SO good!!

After supper, Brady got to take Laela and Solly to the church, where they played their first ever piece in the festival! A duet, to be more specific. They made some mistakes, shed some tears, rallied, finished well, and came home feeling SO proud of themselves. They had so many encouragers who built them up And an amazing teacher, also.

Everyone came home and tucked into bed. My mom had washed up the dishes, and took some frozen bananas home to bake some muffins for us.

And as the day winds down, Brady and I will eat some Doritos and chocolates before drifting off to sleep.

As I said. Its been a beautiful day. So many beautiful people praying. So many promises of continued committed prayer. So many offers to help, and to contribute to our family in a wide variety of ways. People wanting to intentionally connect. Genuine offers of love and support. I know I’m repeating myself, but it has been an absolute flood of emotion and concern and love and determination, and I can hardly wrap my head around it.

What a beautiful day. A huge day. Leading into a huge week. But already, I have babysitting locked down for three different stints. One appointment confirmed. One foster visit. Brady’s first trip back to the cancer centre tomorrow. And who knows what else is to come. Hopefully we will walk out with a radiation schedule tomorrow, but all we can do is pray.

As can you Please do so, if you think of us. The need is real.

Yet, there is peace. We trust You, Lord. No matter what, You are good.

Its come up a handful of times recently that Brady’s mobility has changed. Not uncommon with spinal cord injuries. There are just SO many nerves, it’s easy to tweak things and have something big change. So when Bradys legs started to weaken a little bit more and he started having a bit more spasticity, we started looking into it. 

Some of the doctors were very angry that Brady had taken magnesium, and even angrier that he had seen a chiropractor. But once they got over their initial disgust for our choices, they said its possible his spinal column had been injured, but that we needed an MRI to know for sure. Because when you’ve had grade 4 glioblastomas, specialists tend to lean pretty far towards the worst case scenario. Which we can all understand. 

A referral was put in for an urgent MRI. We didn’t get a call for a week, so Brady called MRI booking, and they informed him, since he had two referrals in the queue currently – one routine and one urgent – they just lumped them together and booked him for May. 

Which was not acceptable. After hounding and fussing for quite some time by both Brady and his medical team, the soonest he could get an MRI scheduled was March 16th, which at the time was about a week and a half away. 

However, as we awaited the 16th, Brady mobility really started to give out. His legs spasmed constantly, knocking him over. He started falling. He stopped being able to pee when he felt he needed to. His legs and back were becoming weaker very quickly. Every morning, he would wake up to something else. So we decided to hit the ER last Saturday, March 8th, and see if he could get an MRI. The waiting was getting out of hand. 

The place was packed, which was pretty discouraging. Brady went up to register, and we sat for a minute before they called us to a back little room to answer a few more questions. Brady mentioned how there is a possibility of tumour regrowth, just to get them to really take him seriously. 

And they did. 

And thank goodness. 

Brady was sent in for an MRI very quickly. It was a long MRI. Two hours ish. Top to bottom. Brain to butt. The entire central nervous system. 

We hardly waited after his scan before we heard from neuro. Bradys surgeon, Dr. Fourney, was on call for consult, but he had decided to come in to see us personally. 

I’m sure you can see where this is going. 

So.

Brady’s spinal tumour is back. In full force. Bigger. And more aggressive. It has actually come back as two separate tumours, situated along his spinal cord, just above and just below where the original tumour was. Each tumour is about the size of the first, meaning this is double the damage. It is growing quickly. And it is growing up. It is currently juuuuust below the cervical spine, which is basically the base of his neck up to his skull. 

Here is what we have learned about Bradys cancer. 

It is mean. As we take it out, it grows angrier and will come back faster and more aggressive. It has showed its cycle, and Bradys neurosurgeon believes it will continue to do the same thing.

Here is where it sucks. 

The ideal solution would be to remove it. However, Dr. Fourney believes that in the six ish weeks it would take to heal post-op, before starting any cancer treatment, the tumour would grow back yet again, bigger, and worse. The higher the tumour grows, the worse the situation gets. In this case, surgery would do more harm than help. 

So. We’re not going to take it out. 

*deep breath*

I know. Hear me out. 

After speaking at length with Brady’s radiation oncologist, this is the plan in place that everyone feels best about. 

Brady is going to have radiation right above the top of his highest tumour. So likely right at the base of his cervical spine. The exact mapping of which vertebrae will be hit directly will happen first thing next week. But they will hit that point of his spinal cord very aggressively, effectively stopping the tumour from going any higher and doing any more damage. With Brady’s first run with cancer a few years ago, he was given the maximum dose of radiation he was allowed to have on his spine before causing damage. And now he needs more. As in NEEDS more. So, with this treatment plan, Brady will lose all use of his legs. He will go from having an incomplete injury to a complete injury. From being a walking paraplegic to being completely wheelchair bound. 

As devastating as this sounds, he is already there. Brady used to have feeling in his right leg, and it is now to about 5% or less. He used to have strength in his left leg, and now it is completely limp. He used to have a couple of functioning ab muscles, but now, if he bends forward in his chair, he needs to push/pull his body back up. Much has changed. Much. So permanent paralysis being the downfall of this treatment feels manageable, since Brady has already been thrust into that boat, whether he likes it or not. 

Once the tumour is stopped in its tracks, they will revisit the possibility of doing more radiation on the tumours themselves, but right now the priority is to stop them from expanding further up. 

We are in it now. We are working hard to get in contact with all the right people. Brady is reconnecting with the rehab facility at City Hospital. Hoping to get some help from the medical social worker in applying for some funding. Also looking into some programs Brady is connected to, and investigating our insurance, both private and through work. We have purchased grab bars that need to be installed throughout the home. We need to make changes to his wheelchair and to our ramp. We have borrowed some medical supplies and Brady is testing them out to see what works and what doesn’t. We are looking into how in the world he is going to get into the bus, and brainstorming how we will ever make the lake life work for us. 

The more I type, I can feel my anxiety bubbling up inside of me. Its hard to lay it all out this way. It’s hard to be apart from Brady right now, even for short spans of time. But if you know Brady, you know he will keep on keeping on Which is a beautiful quality of his. 

We are managing. Grieving. Accepting. Continuing. Lots has changed, and there is more to come. No matter the challenge, however, God remains the same. There is no way would be coping without Him. God is good. All the time.