Treatment

Wow! It’s already February of another year.

I ended 2024 on such a high note:

• I passed my course which satisfied my academic requirements for a certificate which will then after four more courses grant me a diploma in my field of work

• I finished the year with 36 novels read

• We sorted out my seizure medication after so much trial and error and I did not have to be committed to the loonie bin, even though there were times I came pretty close ha ha

So, I’ll pick up right where I left off on my previous update.

The tiredness of the increased dose of my seizure medication did subside and I drastically turned a corner in early December. I have not felt more myself since before surgery and it has been incredibly liberating and has helped boost my confidence so much! I’m back to actively working out (my exercise of choice is high-intensity spin), we have a studio bike so I am never alone (since Trevor works from home) which makes me feel safe in the event I have a seizure while I’m working out. Yes, I’m still having seizures, they are averaging about 2/month and I’ve just surrendered to them. I no longer live in fear, I’ve taken back the power they once held over me.

I haven’t really talked much about this part of my journey, but after my grand mal seizure (where I was left unconscious for just shy of an hour) in November 2023, I was put on seizure medication and it has been a rollercoaster ride trying to figure out an appropriate dose and mix of medications. When that happened, I was resolved to make drastic changes to support my organs to tolerate and cycle through/clean out these medications (not even knowing chemo was in my future). I cut out all: sugar, caffeine and alcohol; and am living a 95% gluten and dairy free diet. It’s been 15 months of this and I’m not stopping anytime soon. When I started chemo I was told that the most important thing (besides the medication stopping tumour growth) was going to be how my liver responded; if my enzymes got too high, I would be taken off of it until they came back down. Obviously, someone in my particular position (where they were unable to remove the full tumour during surgery) can’t afford to take a break from chemo. Science does little to no research on how our diet impacts treatment, specifically cancer treatment, and I have no scientific proof that my lifestyle has made any impact on how the medication is working, but I believe very strongly in the power of the mind and in the very least: it changed my mindset from having NO control of the situation, to taking an active role for my health and feeling that I am controlling everything I can; it helps me just let go of what I cannot control and live with peace of mind. This is just how I am approaching MY journey, lifestyle changes are so personal and each circumstance is unique.

Last week, I was cleared to drive. Which is a HUGE step closer to going back to work, but I’ll have to ease my way back in. My therapist has had me doing active meditation picturing myself on the road, picturing my confidence, feeling it, and arriving at my destination safely. So in my imagination, I’ve been driving for months now ha ha. I will have to resume therapy so we can start to work on physically getting me back behind the wheel.

Yesterday I had my six month post chemo follow up and learned that my MRI results from last week were fantastic. The tumour has not changed/grown *at all* AND the marker within the tumour that had started to show cancer progression post surgery/pre-chemo, has SHRUNK! It was the best news ever! My incredible oncologist was so thrilled and because my bloodwork is clean, I got the green light for my 8th month of chemo! Trevor and I left and just held each other so tightly while the news sank in, then we both let out a huge sigh which turned into a joyful laugh. I then reached out to my close circle. It was a good day for all of us. The best part was telling Ananiah when she came home from school, seeing her do our happy dance and feeling her arms so tightly around me filled me with the all the energy I need to just keep this momentum going.

I’m on my second novel of the year, but also doing academic prep towards going back to school for Spring term which robs me of my reading time. If only the house cleaned itself everyday and I could learn in my sleep hey?

I’ll sign off now; to all of you who continue to check in and always share beautiful messages of encouragement: thank you, I am so grateful for each one of you.

Your strength will be in keeping calm and showing trust. - Isaiah 30:15

My heart started racing, not the bad kind of heart racing, like I'm going to die. But the good kind of heart racing, like, Hello, can I help you with something? If not, please step aside because I'm about to kick the [crap] out of life. - Where’d You Go, Bernadette

xoxox,

Julie

Hello family and friends,

I’ll get right to the big question of how my post starting chemo MRI went:

On Monday I had my oncology follow up and was told the tumour has stabilized!! In the words of my oncologist: this is a HUGE win! Three months in and this drug is doing exactly what it was intended to do: stop any growth dead in its tracks. So the fact that my body has accepted it and it’s working, is very exciting. I know many of you have asked if we can expect it to shrink and the short answer is: that IS a slim possibility but the trial/clinical studies didn’t have enough evidence of that happening to guarantee it. The fact is: most patients on the trial remained stable (progression free) and that’s all that matters at this point. With my tumour being stable I can function at 90% of my old self and that in and of itself is AMAZING. Others have asked when I’ll be off of the daily chemo pill and the answer to that is: never or until it stops working - we are praying for never. So I’ll be taking a pill daily for the rest of my life, I’ve accepted that and am very grateful to have access to this drug.

Chemo did increase my seizure activity both in frequency and intensity, so the decision was made three weeks ago to up my dose of seizure medications and so far so good. I’m very tired in the mornings, but I remember this happened the last time and my body did adjust about a month in. I’m confident this will be the case this time around. If you’re reading this part and feeling sorry for me: please don’t. The fact is, the chemo is crossing the blood brain barrier so effectively that it’s just kicking butt up there so hard and so my brain had a little freak out. There’s no scientific evidence of this line of reasoning, of course, but to me that’s what’s happened and it helped me see the increased seizures as a positive sign before having MRI proof that it was working. Now with my new dose they are more manageable again and not debilitating in any way.

I successfully completed my university course last week and now will have to study for my exam on the 12th of December. I suffer from pretty bad exam anxiety so have set a study plan in place leading up, to help minimize any stress the exam will cause me. I have thoroughly enjoyed having something mentally challenging for me to tackle and the assignments and projects were not easy and very time consuming but the course has been a great distraction and I am proud I made the decision to just do it.

With school, my appointments and just daily life - I’ve been busy and busy is a good thing!

I finished my 34th novel of the year yesterday and got a head start on the 35th at bedtime. If you are a reader and think there’s a book I *have* to read: please hit the contact button and fire me the title. I just have one rule with my reading: I cannot know anything about the book before I start. I don’t even want to know the genre, if the main character is female/male, if it’s funny/sad…nothing. I don’t read the back of books; I go in 100% blind or I won’t read it. Most of my family and friends think this is insane (I do this for movies too - no trailers or I won’t watch it). But, the way I see it: going in blindly means zero expectations and allows me to enjoy the book to its fullest and avoid disappointment! I’ve been like this since I was a kid - it has translated into enjoying my life/experiences without expectations of anything. It has served me very well even if it sounds totally insane. I’m married to a trailer/spoiler LOVER, so this makes for an interesting but fun dynamic. I’ve been to concerts of bands or artists I’ve never ever heard of until they get on the stage and have enjoyed every single one, it kills Trevor a little bit inside leading up because he’s dying to just let me hear one song or even half a song - but I am fantastically stubborn. I imagine if my therapist is reading this, we will “circle back” to why I do this at one point ha ha.

Ananiah is thriving at school and has joined choir on top of all the other extra-curricular activities she has, so she’s been a very happy and tired busy bee this first school term. I love watching her do things she loves and with such a carefree and happy spirit. She truly is my ray of sunshine which pushes light and warmth when darkness and coldness have crept in.

I sign off with a heart incredibly full of gratitude and with a strong sense of being propelled forward in this life that I have been graciously given… and of course my quote & scripture.

Indeed, I wait silently for God. My salvation comes from him. Indeed, he is my rock and my salvation, my secure refuge; I will never be greatly shaken. - Psalm 62: 1,2

We are all living, at most, half of a life, she thought. There was the life that you lived, which consisted of the choices you made. And then, there was the other life, the one that was the things you hadn't chosen. And sometimes, this other life felt as palpable as the one you were living. - Tomorrow, and Tomorrow, and Tomorrow

oxox,

Julie

Hello everyone,

My biopsy procedure went very well, I am still very sore but I am told that’s normal.

My GP followed up with me the day after (Thursday) and told me we don’t want to hear fast because only urgent/‘bad news’ cases get flagged and dealt with. So she made an appointment with me for the 28th hoping we would have the pathology report in by then.

Yesterday afternoon she called me. My heart of course immediately dropped to my stomach. But some amazing human at the pathology lab must have expedited my samples and she got the report Thursday late at night! NO CANCER!!! I have what is called fibroid (cyst) tissue and other than it causing pain for some people, there is nothing harmful about it and completely safe, just not usual which is why my initial mammogram and in depth one got flagged.

That’s one less thing I have to worry about! Thank God!! The irony is 20 mins after I got off the phone with her I headed to my monthly oncology appointment and let me tell you walking those halls knowing I was only there for ONE issue felt like such a win; and I’ll take any win I can right now!

My first MRI since starting chemo is scheduled on October 31st and then we will get an idea of how effective it’s working for me and know where to go from there. I was under the impression (and hope) that a ton of people had qualified for this drug by now. But interestingly enough, my oncologist only has 6 patients under the compassionate access to this chemo I’m on, the other neuro oncologist at BC cancer has a handful and there’s one oncologist in Kelowna who has a handful and that’s it for the whole province! I feel incredibly blessed and guilty all at once. It is my hope that very soon Canada decides to bring this in and give access to all patients with my type of tumour; it does seem like that’s where things are headed, albeit slow.

Thank you for all of your messages and prayers - I don’t know what I did in this lifetime to be so loved and blessed.

For he has said: “I will never leave you, and I will never abandon you.” So that we may be of good courage and say: “Jehovah is my helper; I will not be afraid. - Hebrews 13: 5,6

Every outcome has its cause, and every predicament has its solution - All the Light We Cannot See

All my love,

Julie

Dearest family and friends,

When does this rollercoaster end?

I’m 3 months into chemo and everything is going very well. The only downside has been that my seizures have increased in frequency, which is a side effect of the medication, so we are going to be exploring options with my team on if we alter my seizure medication or just keep monitoring them to see if they settle down. These aren’t easy on me physically but mostly emotionally, they leave me scared to do regular things and I am constantly engaging my mind to dismantle my fear/freeze response just to be able to move forward and continue to try and live the best life I can. I have my good days, and I have my bad days.

Because I still cannot drive, I have been unable to return to work. In late August, I decided I wanted to do something that would challenge my mind and keep it engaged elsewhere so I enrolled in my second to last course for my professional certificate/designation with the option of getting a Diploma, I’m doing this at my Alma Mater: UBC through their Business School: Sauder. It did exactly what I had hoped and for the first two weeks of September it felt nice to be back - the last course I took was right before my surgery.

But on September 12th I had my first mammogram and it got flagged.

Last week I had an in depth appointment at BC Women’s Hospital - an in depth mammogram and ultrasound.

On the mammogram there is a distinct area that looks abnormal. But on the ultrasound it looked “not special” the ultrasound tech said. But then the Dr of Radiology came to speak with me directly.

She said that some breast cancers can mask themselves as normal breast tissue and the only way to tell is close monitoring for two years or a biopsy. Given my medical history and everything I have going on she wants so save me two years of constant scans/stress and just biopsy it so we just know what it is. If it’s normal tissue - which they are suspecting it is, and I’m fervently praying it is - then I can just go for mammograms every two years. They will leave an MRI safe titanium marker in me forever in the spot they biopsy so that it will show up on every scan thereafter to save them having to have it re-checked.

She wanted to do my biopsy ASAP so I’m there tomorrow morning. Then it takes two weeks for pathology.

At this point, I’m feeling very overwhelmed and anxious, but never defeated. I have been tackling each day as it comes and really focusing on being absolutely present in every single moment of the day so my mind doesn’t wander further than it needs to.

Last week I had my first big school project due (as all of this was happening) but it actually gave me something to focus on because you can’t be distracted when studying case law and having to write essays etc. If you’re keeping track, I’m on my 31st novel of this year. I’m doing therapy and making sure to leave time to feel my feelings and then put them in their place and just keep going.

On October 11th I celebrated ONE YEAR post craniotomy and it feels like just yesterday and a lifetime ago all at the same time. My mom along with my sisters showered me with love and we enjoyed a nice dinner out to celebrate - I am beyond blessed with the beautiful humans that surround me in my life.

Ananiah is thriving in school and she’s having such a happy year so far! She’s in swimming twice a week, taking a clay wheel class, she’s still doing therapy and all those and our mid week meetings keep her nice and busy - but in a healthy way.

I’ll sign off saying that although I’m anxious about tomorrow and what will be the outcome, I also am profoundly content with my perspective and that this hasn’t become all consuming. I recognize that I have incredible resilience and I am making sure to acknowledge that to myself: how we speak about ourselves internally is so impactful, so I am learning to tell myself that I am amazing and that the only way out is forward.

So with that, I’ll leave you with my scripture and book quote; this entry will have two quotes because I couldn’t just pick one.

Who of you by being anxious can add one cubit to his life span? - Matthew 6:27

She says, “When I lost my sight, people said I was brave. When my father left, people said I was brave. But it is not bravery; I have no choice. I wake up and live my life. Don’t you do the same?” - All the Light We Cannot See

Going around in a sulk will get you nowhere. Pain is unavoidable, but suffering is optional. - A Long Petal of the Sea

Thank you always for your love, support and your prayers.

xoxo,

Julie

Dearest family and friends, the most common question I’ve been getting is:

How are you feeling??

Before we found out that I needed radiation and chemo I had gotten myself to a place where I was physically and mentally functioning quite highly. Finding out that I needed extra therapy was devastating but I worked extra hard to be able to digest, accept, and surrender. And then I was mentally ready to fight.

Then finding out that I could possibly be approved for compassionate access to a revolutionary drug threw me off again, and so extra work was needed mentally to just be able to keep functioning daily and not become consumed with what the answer would be. Those seven weeks were filled with a lot of prayer and extra daily cognitive therapy.

The weeks after we received the positive news that I was accepted and leading up to my first chemo appointment, were also challenging because they were filled with a lot of unknowns and questions that I didn’t have answers to.

Since my first chemo appointment and since starting the medication, mentally I have been feeling great and at peace. I am not allowing my mind to entertain the thought that this drug won’t work!

Physically, I’m three weeks into chemo and feeling, for the most part, totally the same. I’ve been able to keep my same daily routine of domestic duties and running a household, I need a nap almost everyday, as I do run out of steam mid-late afternoon. I’ve only had one day where I felt extremely nauseous and like I had a horrible flu, it came out of nowhere one afternoon when I had just finished my housework. I took a cold shower and went to bed and slept for three hours and then woke up feeling totally normal. My hope is that this stays this way because I’m feeling as good as can be expected.

Trevor and I were able to head for a night downtown to celebrate our 20th wedding anniversary on August 14th, and we both didn't take a single moment for granted, we are so grateful that I am feeling well enough to have done that given my circumstances!

If you’re keeping count, I am currently on my 26th novel of the year. I am still off all social media and no TV/streaming/binging/news of any kind. For now, I am being the fiercest gatekeeper of my mental health, I’ve worked so hard to get to where I am and I will protect it with every fibre of my being. For me, this is what works. This won’t be the case forever as I imagine some natural peace of mind will come from months of good scans and this drug doing its thing (like I KNOW it will), but for now, I am humble enough to recognize my mental fragility.

I have updated the FAQ page in case you’re interested in more details and how Trevor and Ananiah are doing.

For now, I’ll sign off with one scripture and one book passage; I think this is my new thing for these updates and I’m here for it, I hope you are too.

“The lamp of the body is the eye. If, then, your eye is focused, your whole body will be bright.” Matthew 6:22

He was in his captors’ hands: they had absolute power and impunity, he was master only of his emotions. He repeated to himself the metaphor of the birch tree, which bends in a storm but doesn’t break. - A Long Petal of the Sea

All of my warmest love,

Julie

Dearest family and friends,

My first chemo appointment was today and it went so great. It was such a nice change from previous appointments in that building.

I met with my oncologist who was just so excited to start this process and in her own words, “we are on this journey together into the unknown”.

I met my nurse, she’s awesome and I will have a weekly phone call to check in with her as well as she will be at my in person appointments.

The type of chemo drug I’m taking (which is in pill form) requires bloodwork before you can start and all the way during. So I wasn’t able to get the drugs today. I was sent up to get blood work done (everything’s in the same building which is so amazing). The pharmacy (also in the same building) has the bloodwork results within two hours and then you can get your medication, but I was told that I can pick mine up first thing Monday morning and start it that day. They will dispense my drugs one month at a time. I will be taking it every day for the rest of my life, or if it stops working (which of course we are praying does not happen).

I have to go in for bloodwork every other Friday and an MRI every two months. My baseline MRI is scheduled for next Wednesday and everything is done on site. The most amazing thing about the MRI aspect of this is they have an IV team on site for people who require extra expertise and an ultrasound machine in order to find an access point (which I require any time I have an MRI because I have very difficult veins). So each and every MRI I have, I will first go to the fifth floor, they will open up an IV access point and then I’ll head down to get my MRI - so it is a seamless process.  The process at VGH is not set up this streamlined which led to very stressful scans for me and scan anxiety leading up; so I am grateful for this level of organization which will no doubt help with the anxiety component of my scans! 

I see my oncologist once a month in person for a check up and to review all bloodwork and if an MRI has been done within that month, we review that as well. They will be monitoring mostly my liver enzymes, and my platelet count which can make me immunocompromised.

She went through the side effects with me. I can expect: extreme exhaustion for the first approximate month, loss of appetite, digestive issues, high blood sugar, etc. Should I experience any other symptoms not on the list provided, I report them to my nurse on our weekly call and then it will all be documented and monitored.

I wasn’t expecting to have as many on-site appointments as I am going to be having, but I will take this over cranial radiation any day; so bring it on!!!

I am one of two people who has been accepted at BC Cancer into this program, which is being provided directly by the manufacturer under "Compassionate Access" with approval to bring it into the country for us by Health Canada.  My oncologist is hoping to go through this process with five others, but they haven’t even started the application process for them and of course, acceptance is not a guarantee.  They will be in my prayers!

I’m feeling like now that I have all the facts and the answers available to my questions, I can truly exhale and just let myself feel happy for how this has all turned out and just pray for the best moving forward.

I’ll sign off with one scripture and one book quote, I hope these touch and inspire you as much as they do me.

There is not a word on my tongue, But look! O Jehovah, you already know it well. Behind and before me, you surround me; And you lay your hand upon me. Psalm 139: 4,5

It’s not happy people who are grateful, it’s grateful people who are happy - The Authenticity Project

With all my gratitude and love,

Julie

Dearest family and friends,

So much has happened since I last updated this site, and the only way to give everyone a clear “big picture” is to start from the beginning.

You see, there has been a parallel story happening the entire time since we got the post-surgery pathology report with what type of tumour I have. It was never my intention to share this part of the story, but I have decided that, since it forms such an integral part of my journey, I would like to share it with you.

Up until now, brain oncology has had very limited options as to chemotherapy drugs for people with brain cancer/tumours of any kind, but especially for the exact type that I have. Therefore, the standard of care is typically surgery followed by monitoring, or followed by chemo+radiation therapy when (like in my case) they were unable to remove the entire tumour or when a patient becomes symptomatic ie: my seizures. I check both these boxes.

However, these treatments can be toxic to other areas of the brain and cause harsh, long-term side effects; and neither treatment is targeted to attack the tumour itself, kill the cells or are a cure, but they have been widely used and accepted as a delay method. There has not been a targeted chemotherapy drug that can by-pass the blood-brain barrier that actually attacks the cells and stops or even shrinks these tumours.

In 2020 a revolutionary drug, the first targeted for these types of brain cancer/tumours, was formulated and perfected through clinical trials all over the world, including Canada and the United States. It is an oral penetrant inhibitor that can bypass the blood-brain barrier and thus, deliver a more potent drug. It specifically targets the tumour mutation enzyme, which can effectively hinder the growth and progression of the tumour, setting it apart from traditional therapies. But, it is designed to be taken only if a patient has NOT received any radiation or other chemotherapy, if a patient has done either, this drug will not work for them. It did so well that it received a fast-tracked FDA approval in the United States with a PDUFA date (meaning available for oncologists to freely prescribe as a form of chemotherapy) for August 20, 2024.

As you can imagine every appointment since my surgery I have asked about this drug. But each time I would ask, I would get a very vague response because they had very little information available at the time. So, in March when I met with both the radiation oncologist and the medical oncologist I was told directly, to my face, that even though this drug was “tailor-made for me” it was not an option for me. In their medical opinion, I did not have time to wait to see when Canada would bring it in, and even if it was brought in at the same time as the United States, they felt it was still too long for me to wait and risk further irreversible symptoms. As you can imagine, this was a devastating blow: I would be missing this first time ever revolutionary drug that could help me and completely change the trajectory of my life by a mere matter of months. We went home, we cried, and we digested for a long time. After a lot of prayer and meditation, I came to full acceptance and surrendered.

Their recommendation was that I begin as soon as I could, they were expecting me to pull the trigger shortly after that March appointment and after three weeks of the prep work needed, I would’ve started radiation and chemo. I, however, do not make any decisions without plenty of research and most importantly, plenty of prayer.

I prayed for the wisdom to choose the best time for me to start this fight while also not putting my life in jeopardy. I waited until I felt a deep sense of peace and my decision became crystal clear, I decided to compromise: not start right away like they wanted, but to begin within their recommended window of no more than 3 months. This put me at June - and then I wrote my last update.

I had a routine MRI scan already scheduled for May and I called my oncology team and let them know that I would start therapy after that MRI which would put me at June, they both respected my decision and said they would use that scan as my baseline scan before starting radiation and chemo. So appointments were set for the second week of May to begin the process and go over the results of my scan.

On the second week of May, I had four doctor's appointments. The first was with my neurosurgeon, the second with the radiation oncologist, the third with the medical oncologist, and the fourth was with my GP.

I decided to give it one last shot and ask about this drug. My neurosurgeon said that based on how positive my scan looked if we knew that I could get it in August, his recommendation would be to wait. But, he explained that this will likely be like a Taylor Swift concert tour announcement (his actual words); where, it would come to Canada, and then the demand would outnumber the supply until they calibrated, and this could take until next year. So it was still his recommendation that I proceed with radiation and chemo.

I then met with the radiation oncologist, who said the same thing. It was days later that I met with the medical oncologist who told me that when she met me in March, she had zero information as to when or how this drug would come to Canada. But that in the last couple of weeks, they had received a letter saying that this drug could now be applied for through a program called Compassionate Access - I had to sit down when she told me this.

She was not told how they would choose people, how long the applications would take, and she didn’t know whether me being symptomatic would disqualify me. But, she told me, that if we could somehow get this it would be life-changing for me. And then she asked: would you like us to submit an application on your behalf? My answer was a very resounding YES! She reiterated that it could come back as denied, and that would bring an onslaught of emotions and asked if I was up for it, in that moment, I knew that if all else failed, I could pray my way through anything.

So seven weeks ago yesterday, my application was submitted, and I’ve been living in limbo, not knowing what my future holds. I didn’t share this with anyone but less than a handful of people, including my own sisters. No one in my life even knew that this drug existed because, with integrity to my personality, I was trying to protect those who love me the most by sparing them this heartache.

If you are a family member or a close friend and are reading this, just know that me not sharing this with you is not a reflection of how close I feel to you. I just wanted to spare you from the heartbreaking knowledge that this drug was out there and I wasn’t going to get it. And then once we applied, having everyone’s anticipation stack up on top of mine, and the pain that would come if the application was rejected, would be too much to bear.

On Wednesday July 3rd at 11:22am, just one day shy of seven weeks of waiting, we got a call from BC Cancer saying that my application for this drug under Compassionate Access has been approved by Health Canada!!! Thankfully, when the call came through, Trevor was not in any meetings and Ananiah was at camp so that we could put the phone on speaker and receive the news together, standing clinging onto each other. As you can imagine, as soon as Trevor heard the word ‘approved’, he crumbled into his office chair and started crying, and I was left to talk to the nice man (through my own sobs) who had just changed my whole life, to get further details.

I have my first appointment with my medical oncologist on July 26th and I’m happy to report that this means that I will not need radiation and not only will I be getting chemotherapy, but I will be getting a revolutionary targeted chemotherapy for the exact type of tumour that I have. I pray that I am like one of those people from the clinical trials that this was life-changing for. But only time will tell.

For now, I sit with the deepest gratitude for the power of prayer, the peace and wisdom that God has given me to make all of these decisions at the right time. I get goosebumps and feel sick to my stomach just thinking that if I had listened to them and started therapy when they said to, I would not be in the incredibly blessed position that I am in right now.

These last seven weeks have taught me a lot about myself, about the power of the mind, and about how important it is that in dark and uncertain times we feed our minds and our bodies well so that beautiful light can overshadow the darkness and we can feel peace.

In fact, ever since the first time I asked, and it was “no” I have taken away all the ‘noise’ from my life, including social media, TV, movies really anything that will numb my brain, I have removed for now. Because I need my brain to process everything that is happening to me in a healthy way so that I come out as mentally unscathed as possible and so that I could get to a place where I don’t let fear, or sadness, or pity, rule my life. I am on my 24th novel of the year and this has been one of the ways I find joy and where I let my mind get lost in a world that is not mine.

These past seven weeks, I haven’t just been waiting and existing; I was able to harness my mind into living the best life I could while I waited. Some major highlights were attending my beautiful niece’s graduation & attending our entire convention.

So, now you know the *whole* story. I am incredibly grateful for everyone’s support, love, prayers, and space when I’ve needed it.

I will sign off with one scripture that has really helped me as well as a quote from one of my favourite books that has become a motto for my life.

“But as for me, I will keep on the lookout for Jehovah. I will show a waiting attitude for the God of my salvation. My God will hear me.” Micah 7:7

“Adversity presents itself in many forms; if a man does not master his circumstances then he is bound to be mastered by them” - A Gentleman in Moscow

Love always,

Julie

Hello 👋🏾 it’s been a while…

I want to put this out there because I know there have been so many questions and many check-ins that stem from a place of love and although we have been so grateful for the deep love that has been shown to us, it’s been overwhelming to try and process everything that’s been happening and we have needed time to come to terms with it all and get the help that we need. But most importantly, we have been protecting Ananiah; we have not wanted any information to be “out there” until she had been told by us and knew all the facts.

The day after my surgery we were told that the surgeon was not able to remove my whole tumour - so instead of my surgery being a removal it had in fact been a resection. This crushed us. It was explained to us that when they went in, there was a portion of the tumour that had grown adjacent and dangerously close to the area of my brain that controls the entire motor function of my right side. Because of this, they made the call to get as close as they could and leave the rest there to ensure I didn’t wake up from surgery with severe deficits or disabilities.

We then waited for pathology to see what type of tumour this is. It turns out that although it is a very low grade and slow growing tumour, it is in the category of tumours we were desperately hoping it would not be. This was, yet another, huge blow.

Then, on November 14th, as you have all read, I suffered from a severe grand mal seizure. I was admitted and discharged on medication - yet I ended up having two more (each time, the medication was increased). Turns out, the higher dose of this medication was above my body’s threshold and it put me in a serious mental health crisis (a very serious side effect of this drug). All of this was happening in December where, because of the holidays, doctors and clinics were closed or away. My GP, as an answer to a prayer, took me on Boxing Day and saw the state I was in and reduced the dose and gave me extra support while I awaited my official appointment with my neurologist (who is managing anything seizure/medication related).

From my first seizure to about three weeks ago - I unfortunately have suffered seizures in the double digits - sometimes up to multiple times a week. None of them have been as severe as the first, since the original medication at this lower dose seems to be keeping those type at bay, but each was difficult, painful, and would leave me exhausted and sore for days, not to mention if you were with me, they were unsettling to watch. We went through weeks of trying different things and I have been on a new medication (in addition to the lower dose of the original) for three weeks or so now and there has been a huge improvement and I feel reluctantly hopeful that we have the right combination of medication - but I will have many follow-ups to ensure that this is the case.

In February, I had another MRI and it was confirmed that the seizures were being caused by the proximity of the tumour to the motor function area. Seeing as how this area of the tumour will never be operable (able to be removed) without serious consequences, my neurosurgeon set up appointments at the BC Cancer Center. We have met with a radiation oncologist and a medical oncologist, (chemo doctor) as well, my case has gone before a tumour board where different professions (neurologists, neurosurgeons, and oncologists) sit to review the case. It was the consensus that I begin radiation and chemo within the next 3 months.

We don’t have dates, but do have appointments set. As it currently stands I will begin radiation sometime at the beginning of June. Radiation will be 5 days a week for 5 weeks. Simultaneously, I will start chemo. The type of chemo I’m doing is in pill form and I’ll do it for an entire calendar year - and for those of you wondering: I won’t lose my hair! Although I will lose my hair in the area that will take the radiation.

The reality of the situation is neither of these treatments will shrink the tumour, the entire purpose and hope is that it will stop it from growing any more into that dangerous area (we don’t know for how long this treatment will “keep it at bay”). If it were to grow back into the area they were able to remove, then another surgery could “fix” that with little to no consequences, but if this tumour as it stands right now goes untreated (and as it IS growing albeit it slowly) they want to be able to preserve and prevent further symptoms/consequences because they would be irreversible.

Everything I have written here, Ananiah has been made aware of and with the constant help of her amazing therapist, we are helping her navigate all of the feelings that come with this news. But, with this in mind, we will never answer any questions that we haven’t already told her - we are giving her the information when it is confirmed and when there is a plan of action, and there are questions that have answers that she doesn’t need to know because they aren’t a fact - none of us knows what the future holds. We want to minimize the impact that dealing with something like this comes with so we know and have confidence that our friends and family will respect this boundary.

Having said all of this, I haven’t had any social media since December (I completely deleted it off my phone) and I won’t be sharing updates that have anything to do with my health on there if I choose to re-install and be back on it.

But, I will be sharing on here how it’s all going as I don’t want to go through this in isolation - so please feel free to send me messages on here or text/email me.

I cannot express to you all how through all of this we have constantly seen Jehovah’s hand in our lives DAILY. We are beyond blessed to have family and friends who love us as much as you all do - and please know that every prayer that has been said on our behalf has been answered in one form or another.

I have been relying so much on Philippians 4:6,7 “Do not be anxious over anything, but in everything by prayer and supplication along with thanksgiving, let your petitions be made known to God; 7 and the peace of God that surpasses all understanding will guard your hearts and your mental powers.”

My days do not always go as planned, they are often filled with tears and many emotions, but every day has joy and happiness and I go to bed with a calm peace over me. Jehovah is guarding my heart and mental health, and making sure that I have the strength to take all of this on.

All my love,

Julie