Fine friends

We have moved around a lot. All within southern Ontario, mind you, but our 3 kids were born in 3 different places, in less than 5 years time. We could be described as a bit “nomadic by nature” in our early years … 🙂

So we have friends in a lot of different places. Thankfully we’ve been blessed with the ability to make friends & with the gift of modern technology & social media, have been able to keep many of those relationships going over the years, no matter where we’ve lived.

Since moving back to Niagara we’ve been able to reconnect with lots of friends that we’ve known for many years … enriching a history full of great memories. But we’ve also made many new friends, through our church community, work environments & neighbourhood.

This week I’ve been reminded just how precious each & every one of these relationships are. It’s during the tough times in life that ‘your people’ matter most. Whether we talk, message, or you pray for or think about us every day or once in a while … every single one of you matters. We’ve discovered that everyone reaches out or stands by us in different ways & we treasure each one. Whether we’ve had a close friendship for years, or we have a new friendship that’s in it’s infancy … we are thankful for fine friends.

Darin’s days continue to be up & down. Some good, some not so good. This week the follow-up tests (MRI tomorrow – Darin’s least favourite thing!) start, with more next week. We continue to hope & pray for positive results … that the tumours have stopped spreading & maybe even started shrinking. Hopefully we can start to feel like we are making some strides in getting ahead of this horrible disease.

We are “gettin’ by with a little help from our friends ” … much love & thanks to all 🙂

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Unpredictable days …

The uncertainty (& underlying fear) of the cancer journey is one thing. It can be scary at times, for sure. The future has a lot of unknowns to it.

But the unpredictability of the every day of living with cancer is something else all together. It also is completely unknown. How many of us truly live like we don’t know what tomorrow holds? Most of us make plans. We have things we plan & want to do. We have jobs that we go to, knowing (or at least we think we know!) that we, barring any unforeseen circumstances, will be able to do.

Darin’s life has taken a very different turn from that. His days are pretty unpredictable right now. The beginning of this past week was good. He went back to the men’s choir, the gym & to a World Cup Hockey game with a friend. So great! But then he spent 2 days on the couch recovering …  so not great. The pain in his back & leg was terrible again. Thankfully it didn’t keep him from a great day of live football with his siblings today. Really great 🙂

So we continue to make plans. Not for the very distant future. But for each day. Knowing that God is with us every step. That HE knows what each day holds, even when we don’t.

As we look towards Darin’s 3rd treatment this Wednesday, we hope & pray that the effects of the immunotherapy will be greater than the side effects. That the drug (Pembrolizumab) will begin to shrink the tumours as it’s supposed to do, so that the upcoming scans & tests will give us the results that we so desperately want.

Thank you for journeying with us. God bless you all.

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Tough days = long weeks

Migraine sufferers & anybody with chronic back pain knows what it’s like … pain in your body is hard to take. It affects every moment, every movement of every day. I’ve had some of those issues at different times in my life. But watching our son suffer with pain that causes him to hobble/limp around the house is a whole different thing. It makes me feel sick 😦  It hurts, a lot.

So after 3-4 days of pretty severe pain in his left hip & leg, Dave & Darin went to the St. Catharines hospital to have it looked at & eventually were sent back to Princess Margaret for a more thorough exam, including yet another CT scan. Now we are waiting once again for another doctor to determine whether a second round of radiation treatment on the tumours on Darin’s spine (L3, L4 & L5)  might help to alleviate some of that pain. In the mean time, at least we’ve found a regimen of pain killers that seem to be helping to make the tough days a little bit easier.

But they haven’t all been tough. Yesterday was a good day … & for that we’re so thankful. Thankful for many things. For friends who stop by to visit us. For Darin’s friends who come by or invite him out. For the prayers, kind words & messages sent. For the friends and family who are rallying around us in the Terry Fox Run (Walk!) tomorrow. THANK YOU. Every single one of you is making a difference. Please know that it doesn’t go unnoticed. A very special group of ‘old’ friends today reminded me that “there’s always a silver lining” … & that’s so very true 🙂    An attitude of gratitude. Count your blessings. Every day.

Here’s the link, for anyone who wants to support cancer research through our team “Holding Fast” … http://www.terryfox.ca/niagara-on-the-lake

God bless  you, every one.

The tough days

When someone is diagnosed with cancer, you know there are going to be tough days ahead. But when those days hit, you’re never really ready. Kinda like having a baby … you think you’re ready, but you never really are  🙂

While we’re still at the beginning stages of Darin’s cancer treatment, round 2 has already been quite a bit worse than round 1. Now Darin’s not a complainer AT ALL, & has, unfortunately, suffered through a lot of pain in his body his whole life. So he’s used to it. Sadly, he’s used to not feeling well. But this pain is different. It hurts … & knowing that it’s part of a much bigger picture is unnerving to say the least. So when he described the pain in his left leg & back this week as “constant” & “almost unbearable”, needless to say we were all pretty upset & discouraged. Makes us afraid for how tough the days are really going to get, as we move through 1 year of treatments.

But, if there’s one thing we’re learning along this journey, it’s not to look too far ahead. That’s just NOT allowed. But that’s easier said than done. We are natural-born planners. There’s comfort in having plans in place. A friend recently told me “plans are important” & I agree. So we continue to try to help Darin sort out how to plan for the future. What to fill his days with & how to find activities that are suitable for him in this time. He’s still working a little bit, but has a lot of free time as well. Thankfully he has friends that come by & drag him off the couch from time to time  🙂

So we soldier on. One day at a time. One week at a time.

We trust God will show us the way. His way is the right way.

To plan or not to plan … or what to plan?

How does one plan for a future riddled with uncertainty? How does a 21 year old guy figure that out? How do his parents advise him on what or what not to do?

These are the questions we’ve been pondering & discussing during our recent weeks “off” (from appointments or treatment). It’s a strange, confusing, sometimes difficult place to be. A lot of questions with very few answers.

While many parents, students & teachers are gearing up for another school year right now, Darin too wants to be making plans for his future. He’s always wanted to go back to school … either university or back to bible college. But now what? How much effort should he put into making that happen? Is it really worth it? The “what ifs” are many …

So as we face Treatment #2 on Tuesday, this week, we wonder … are the treatments going to work? What if they don’t? What’s the prognosis? What if … ??

Only God knows. That’s the only answer that we know right now. As I’ve said from the beginning … we don’t know what the future holds, but we do know HIM who holds the future. And to HIM we hold fast. Today & always.

Immuno-lull

A quiet week for us … relatively speaking. While the days & weeks without appointments or treatment are a welcome break in some ways, they also feel, as a friend of ours who is also in cancer treatment once mentioned on his blog, like a waste of time. What do you do? How do you “live with cancer” when you’re not busy dealing with it on a day-to-day basis? It’s a weird place to be some times, & requires a perspective shift a lot of the time.

So, since Darin & I both had a hot, sunny day off … we decided to be tourists in our own town 🙂 We enjoyed a fun ride up & down the Niagara river via Jet Boat Tours. Needless to say, because of the proper soaking we got, we have no pictures to share … but a warm, wet adventure it was!

Then Darin had the priveledge of being part of the musical team (he was on the keyboard) for a friend’s wedding on Friday. Thankfully he had the energy & stamina for it & was able to enjoy a fun time with great people.

He continues to have back & leg pain, & sadly came down with a nasty ear infection this week as well 😦 but other than that continues to be physically & mentally pretty OK. Ups & downs. Normal life. For that we are thankful. One week at a time.

 

The downs & the ups

Wicked Wednesday turned into Fun Friday 🙂

The follow-up visit with our medical oncologist provided us with reassurance that none of the spread of Darin’s cancer to other organs was unexpected (according to them) & was completely within normal limits for 3 months of time left untreated. Whew!? Some relief?! At least the treatment plan & the prognosis (whatever that is – only God knows) do in fact, remain the same. They too, hope for & expect minimum side effects with the Immunotherapy for now … & so far that has proven to be true. Some back & leg pain & fatigue, but that’s it … for now.

So … since we were all in Toronto already, on a beautiful, hot summer day … why not do something fun?!  Off to Canada’s Wonderland for us! For those that don’t know … we are a family of amusement park “junkies”, so Colin & his girlfriend were able to join us for part of the day … & a day it was. Several hours of thrills & spills 🙂  lots of fun was had by all. Capped off by our “thrill seeker” sons putting themselves in a human sling shot!! Enough to put a few more grey hairs on this mom’s head!!

What a great opportunity to forget about cancer for a while. Such a nice break, from an otherwise relentless situation of concern. While we’ve not been able to get away for a longer vacation this summer, which has been hard, we are learning to appreciate the short breaks we do get. Every day is a gift. We need to remember that.

Fun Friday led to a slower Saturday & a simple Sunday. Time to relax & just be.

Looking forward to 2 whole weeks without a trip to Toronto. Let it be so!

Thank you for journeying this roller coaster with us. God bless us every one.

FINALLY! Treatment #1! … But …

Sadly, it turned into yet another wicked Wednesday. What’s with the bad news always coming on Wednesdays?!?

While Darin’s early morning blood work & physical exam was fine & all was good to go for the Immunotherapy treatment, one last review in the clinical trial lab area brought very unexpected bad news. Again. WOW.

The CT scan from last week has revealed that while we’ve been waiting all this time for tests, scans & biopsies, this horrible disease in Darin’s body has spread. Ugghhh 😦  NOT AT ALL what we’d hoped for today. He now has small “spots” on his lungs, liver & under one arm pit. Wow. More bad news! How much more can we take?? 😦

The good news, however, was that as far as we know right now, the treatment plan remains the same … thankfully.

So the IV infusion went ahead, although somewhat delayed … & another appointment set for Friday to meet with our  medical oncologist to review the recent findings. Our cancer saga continues … with it’s MANY twists & turns. For tonight, we are discouraged for sure. BUT … so far Darin’s still physically OK. No real side effects yet … thankfully.

For all the kind words of encouragement via social media & modern technology today … we are thankful.

To God for His continued sovereignty & power over the waves of uncertainty in life … we are thankful.

 

 

We are almost there …

Well, after 2 different diagnoses, 2 different treatment plans, A LOT of tests & scans, & almost 3 months later(!), we are almost there … ready to start treating this thing that has invaded Darin’s body. He is ready. We are all ready. Cautiously optimistic & anxiously hopeful to just get on with it.

He is feeling pretty well these days, which is awesome & weird at the same time. Makes it easy to ignore & even forget that he has such a serious disease. He’s enjoying our backyard pool  & playing the piano most every day. As usual he did an amazing job on the keys in our church service again today 🙂 He will continue to work P/T at Columbia Sportswear as he is able. They have & continue to be very kind & understanding.

On one of our VERY early morning trips to Princess Margaret this past week, Darin & Dave had time to wait between appointments, & found a beautiful rooftop garden patio on the 16th floor of the hospital. What a great place to retreat to! Gives you an incredible view of the city & it’s many diverse people & neighbourhoods, & makes you thankful for so much.

So after one more biopsy tomorrow morning, the plan is to start Immunotherapy by IV infusion,  with a drug called Pembrolizumab on Wednesday morning. That will continue once every 3 weeks for a year. Bring it on! We’re hoping & praying for amazing results, few side effects & complete healing. We know ANYTHING IS POSSIBLE because God is on our side. He remains in control, & we trust in Him.

Thank you for journeying this long & winding road with us. We continue to feel suppported & encouraged by our family & friends. God bless you everyone.

So we wait …

For more results … & more tests. With only one MRI this past week, & many more appointments ahead of us next week, it feels like we are in limbo. That’s not a comfortable place to be when a loved one has a horrible, incurable disease. But while we wait, we live …

We enjoyed a couple of beautiful, hot summer days last weekend … making memories with family & friends. Colin & his girlfriend & Leah & her boyfriend each visited NOTL, giving us a chance to do normal family things. Spending quality time together … times we cherish now more than ever. So much to be thankful for. Each day is a gift.

This coming week will include more blood work, another CT scan, another MRI, another biopsy & the signing of the consent for the clinical trial for Immunotherapy at Princess Margaret … with plans for Darin’s first IV infusion on Wed. August 17th. Only God knows what our days will look like following that. We are hoping & praying for minimal side effects of the treatment. Time will tell …

While we wait, we hope … & trust … & remain faithful … to God & his almighty plan for us. We don’t understand & it’s not always easy, but “it is what it is” & worrying doesn’t change anything. Darin maintains that “the joy of the Lord is our strength” … & in that we believe. One day at a time …