The Circle of Life … & Death … & Complete Healing

Last Sunday I could never have imagined I’d be writing this blog post this Sunday. As Darin & I sat in his room watching the service at our church, worshiping right along with everyone, we were filled with peace. Supported & encouraged by the powerful prayers of so many of our loved ones. We waved back to those that waved at us & opened our hearts & spirits in song.

But as has so often been the case on this cancer journey, on Monday we were met with yet another turning point. In hospital Darin was in pain. Terrible pain … which was agonizing for all of us. In his quiet, calm manor he handled it well .. with inner strength that comes from God alone. While we grappled with decisions over what could be done, what should be done & what God was doing, he rested. Heavily medicated he slept, & then woke & smiled & made us laugh. Typical Darin. Always, always, always loving, kind, so considerate & sweet.

We wept in private & comforted him always. We prayed for a miracle … & I believe we got one. A living, breathing, real-life miracle named Darin. Fully surrendered to God. Forever in our hearts.

Rest in peace our sweet angel. Safe in arms of Jesus.

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Full Circle

It’s been an unbelievable 24 hours … & we are right back where we started this crazy journey of ups & downs, twists & turns, bumps & bruises. On a sunny, warm Friday in May we entered the Walker Family Cancer Clinic at the St. Catharines General Hospital expecting more tests & walked out with a new label … “cancer patient”. Last night, almost exactly 6 months later, we returned to the hospital … our 3rd ambulance ride in 2 weeks 😦 … after Darin suffered an unexpected fracture in his left thigh bone while trying to get out of bed. UGGHHH!! 😦 The absolute agony of it all! He was distressed & honestly, so were we. A rough & restless night was spent by all.

But, we had great care from EMS Niagara, the ER doc who got Darin admitted, nurses on the surgical floor & the amazing orthopedic surgeon who managed to set Darin’s broken leg in traction. Sadly, surgery to repair it is not an option in his condition, so we are doing our best to manage his symptoms & get him the best pain relief possible.

He is heavily medicated & drowsy, but did enjoy a couple visits from family & friends, including our awesome pastors Kevin & Jeff.

Thank you for continuing to pray for our amazing son & for the rest of our family as we trudge along this difficult path. It is gut wrenching to watch helplessly as your child/brother (no matter what age) suffers both physical & mental duress. God is with us. We know & believe that with all our hearts. We take comfort in Him.

Wow

We are completely overwhelmed … by love, friendship, compassion, the power of prayer & so much more. What an amazing evening at Cornerstone. Our church community & many, many other friends & family from near & far came together to support us in very meaningful ways. Not only financially, but more importantly, in the joining of heart & soul in petitioning our great God on Darin’s behalf. Asking God for healing … strength, comfort & peace through the journey. Wow. So incredibly awesome.

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Darin & I were totally there in spirit. We watched every minute from his room & were so moved & inspired by the complete out-pouring of love & prayer for us. As one dear friend put it … “God was so there!”

Thank you. Thank you. THANK YOU. For praying for & supporting us on this road. God is with us. Every step of the way.

As the saying goes … priceless ❤

 

The pain of it all …

Cancer sucks. Even the website says so. It (almost) literally sucks the life out of the person with it, & hurts that person’s loved ones (ie. care givers) almost as much. The pain of it all is severe … debilitating … overwhelming … & just plain horrible. I hate it. I hate it more than I’ve ever hated anything in my life.

That’s my angry mother heart talking. My softer, more loving mother heart is saying something very different. My real mother heart is broken. Raw. Cut to the core.

As I’ve been home, looking after Darin’s every need this past week, I have tried to remain positive & strong. I’ve prayed without ceasing. I’ve cried. I’ve cried out to God for mercy & strength & healing & peace & calm through the storm. I’ve been mom-nurse (oh the slew of meds! Ugghhh), caterer (many meals in bed now) & encourager (through the dry heaves & a host of other things). I’ve watched our beautiful son struggle … & sleep.

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The pain of it all … is unbearable at times. Dave & I are often at a loss for words. We are in uncharted waters. Many times we aren’t sure what to do next. His sweet sister Linda reminded me this week … “just one foot in front of the other” … so that’s what we do.

With power only God can give us, we soldier on. For Darin’s sake. We hold fast to what keeps us on this incredible journey, encouraged by family & friends rallying around us in incredibly meaningful & powerful ways this weekend. Thank you! All along the support has been amazing & that we believe, is God at work among us. A true miracle … & a fitting tribute to who Darin really is. Loved by God. Loved by us ❤

 

 

“Untitled”

I’ve been dreading writing this post all week, because I feel like I have no idea what title to give it or where to even begin to describe what has gone on the last several days.

As the pattern goes … after a couple good days on the weekend where we got to enjoy some great time together as a family, with Colin & Leah & Nova, Colin’s puppy(!) – pics to follow 🙂 both visiting;  it’s been straight down hill from there. Definitely hoping & praying it is a rough patch & nothing more.

While Darin was feeling OK, he & we were able to get out for some family pictures (many thanks to Cindy, of CJK Photography), & a visit to the lake with the dogs & Gramma & Grampa. Our boys cheered on their favourite hockey team together & joined us for 2 rounds of “Sorry” 🙂 Darin even enjoyed sharing his gift on the piano in church on Sunday. So great to see & such a sweet blessing!

But the burdens following the blessings have been very heavy. He has been in A LOT of pain, so excruciating at times that he feels completely seized up & can’t move. One episode so severe it sent us back to the ER again. The struggle to find effective pain meds is real too, & the involvement of CCAC & yet another ‘team’ of health care professionals makes me feel better & sick at the same time. Palliative is a word I just can’t tolerate quite yet & maybe never will.

We are surrounded, that’s for sure … with both tremendous blessings & terrible burdens. Blessings abound in caring friends with offerings of  healthy food, prayerful support & countless messages of love & compassion from family & people both near & far help get us through every day. They, along with strength that comes from God alone, help us carry burdens that are far too heavy for us … the heartache that comes with watching your child suffer in so many ways, from a beast-of-a-disease that is ravaging his body. It is all-consuming & at times overwhelming.

We are surrounded by a triune treatment regimen too. Darin is now taking a chemo-therapeutic drug orally every day to try to slow down or stop the growth & spread of his many cancerous tumours. We have also sought out treatment with Naturopathic Doctors who specialize in cancer (in St. Catharines of all places – yay!) for IV Vitamin C infusions 2-3x/week as well as Photodynamic “Light” Therapy at a private clinic in Toronto 1x/week.

We are fighting this dreaded disease from all sides & invite you to join the fight by continuing to pray to the One who can heal our boy completely.  Darin said it himself this week … “one thing about this pain … I know it won’t last forever” ❤

We don’t know what the future holds, but we know HIM who holds the future. That has to be enough for now.

Confound and befuddle

Sorry, this one got kinda long … !!

What a difference a few days or a week make! I have to write this blog post tonight because my heart is swelling with hope & happiness.

When our pastor, Kevin, prayed for Darin 2 Sundays ago, he prayed that God would “confound” the doctors … interesting term.

This past Sunday Kevin prayed that God would “befuddle” the doctors with miraculous healing that would remove all the cancer from Darin’s body. Sounds like the miracle we’ve been hoping for …

Now, I believe we are doing just that! After a very rough weekend of feeling like Darin’s illness was getting the best of him, & us feeling increasingly desperate & fearful, he has had some ‘alright days’ this week … still in pain with his back & legs, but also moments of feeling slightly more rested & energetic. After a massage at GoodLife he was able to enjoy a short time in the pool. Tonight he had the energy & will power to do what he does best … join his worship band’s rehearsal & “rock it out on the keys” (words spoken by yours truly!) 🙂

Thank God!!! And THANK YOU …  ALL of our friends & family, both near & far, people we know well & people we hardly know at all, for praying & supporting our family during this difficult time. The countless ways you have blessed our family is completely overwhelming & we are forever grateful. The way so many people at Cornerstone Community Church have stepped up & offered us meals is incredible. Thank you so much.

Please keep praying for our son. We are firm believers in the power of prayer & know that God is already at work … in a very mighty way. As my former office manager & now dear friend Anne so beautifully wrote to me this week … “the miracle is already here. The miracle of our Saviour, the miracle of family & faith, & of Darin – a child beloved of our Heavenly Father who called him by name before he every became a gift to our family. The miracle of a young man who is steadfast & immovable in his faith, that despite all, lives as an example to everyone who meets him. The miracle of Darin who lives with the assurance that he is held close in the palm of God’s hand.” (paraphrased slightly)

We are holding fast for that miracle. Day by day.

What you’re really made of

For the first time since I started this blog, I’ve been struggling the last few days with what to write … or even what title to give this blog entry. Words like “the valley” or “a turn” or “this is a test” or “that sick feeling” come to mind, but sound so desperate & discouraging that I don’t want to see them in print. But honestly, our week has been discouraging & at times, desperate, with every other emotion in between.

Some high points:

a visit from both Colin & Leah last weekend … & a good ol’ fashioned game of back gammon with his sister (which Darin really enjoys & normally wins – but not this time!)img_0196

Darin’s beautiful smile as he starts a new regimen of all organic juicing, in our attempt to starve the cancer cells in his body the natural way. Who cares if the medical community  doesn’t believe in it, their treatment didn’t work either 😦

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A beautiful, single yellow rose that Dave found in our backyard. A sign of HOPE that we are clinging to, moment by moment.

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Some low points (which I refuse to take pictures of):

Darin’s very limited walking due to the severe pain in his back, hips & legs. Forced to use a cane at times, as well as a wheel chair for the hospital visits (I did try to make that part as fun as I could for him), plus long hours of time in the recliners in our basement.

Fitful nights, help required to get out of bed, only met with dry heaves to start the day … UGGHHH 😦 … oh the pain of it all!

Darin’s increased desire not to be left alone & to remain at home & declining visits from his friends … 😦

Dave & I watching our child struggle … in pain, sometimes so severe he can hardly move. Cuts you to the core. Such a sick feeling.

AND SO … we are discovering what we`re really made of & what we need to survive. What we need, is a miracle. I invite you, one & all, to hope & to pray with us … for the healing miracle that our son needs. We cling to the hope that our all powerful, all knowing God, the Great Physician & Healer, will provide that, according to His will. Amen.

 

 

A New Low

I am saddened to say we have bad news … again. What felt like a ‘low’ last week has reached a whole new level this week 😦

While we’d hoped all the pain & increased illness with Darin last week was the treatment working hard in his body … after all the tests & scans this week, we found out the exact opposite. The immunotherapy treatment is not having any effect on the cancer in his body … & all the symptoms (pain, fever, shortness of breath, etc.) are actually due to significant spread of the disease. Our worst fears realized! UGGHHH 😦

To say we are discouraged is putting it nicely. More accurately, we are devastated. This news comes as a real blow, that’s for sure. Our hearts are heavy & our spirits are crushed. HOW CAN THIS BE?!?!????? After 5 months on this cancer journey, it feels like we are starting all over again, right back at the beginning … we feel much like this tired, droopy, whithered plant on our deck. Pretty worn out.

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However, our oncologist described Darin’s case as “exceptional”… & I agree – Darin is exceptional 🙂 He is amazing in every possible way (not that I’m a biased mother or anything). God has molded him into a sweet, caring, thoughtful & compassionate young man of God, who remains faithful to his true self & his God every day. He stated confidently to me that we still have “all the hope” … & I believe that. We believe that God can & will heal him, whatever that may look like & only in His time. Our job is to wait patiently for that.

Thankfully, in the meantime, we are being offered another mode of treatment . Darin is being removed from the clinical trial of Pembrolizumab & will start on a stronger regimen of something called a ‘biological’ therapy with a drug called Pazopinab next week. It is a pill that he will take orally every day. We should know within 2-4 weeks, whether the drug is working to stop the growth & spread of his tumours.

We continue to hope & pray that the new treatment will work & that we will get our miracle of healing that only God can ordain. Please join in our hope. Thank you to everyone that is praying for us. It means more than you will ever know.

Highs … & Lows

We are still choosing to be thankful for 24 hours of good times we had at the start of our Thanksgiving Weekend at our church retreat at Camp Crossroads. Great friends, beautiful surroundings, good food & God’s greatness displayed in people & nature are a lot to be thankful for 🙂

Unfortunately, our good times came to a grinding halt after one day of fun. While Darin was feeling alright he enjoyed a few of the activities he loves most, while at camp with his friends. But boy, did he suffer after that 😦

Saturday night his muscles seized up terribly, causing him to have trouble walking on Sunday, & by Monday evening when the fever started, we weren’t quite sure what was going on. Maybe he was battling the flu on top of everything else? Man … what else?!?

After 3 days of that, we found ourselves in the ER department of the St. Catharines hospital, hoping for answers & some relief from the pain, fever & shortness of breath.     7.5 hours, 1 x-ray & 1 CT scan later, we had some answers. The fever finally dropped & the pain decreased after large amounts of fluids & medication, but the other news we got was unexpected and not what we’d hoped for. Fluid on the lung. Ughh. Yet another issue to deal with 😦

Our “high”of the previous week definitely turned into one of our lowest weeks yet. It’s hard to have a sick kid. It’s even harder to have a really sick kid. These are tough times.

As we head into 3 days of tests & 1 day of treatment, we are hoping & praying for better times. Days of less pain & more strength. Days when we don’t feel like the disease is winning. Days of trusting our God to provide for everything we need. Days where the well wishes & prayers of our family & friends are answered.

God bless us, every one.

Thankfulness is a choice

It’s easy to be thankful when your life is cruising along just the way you want it to. When things are going your way & all is well in your world, thankfulness comes very naturally.

But for us, it’s a bit different than that these days. On May 20th our lives took a turn. Then on July 6th (when Darin was re-diagnosed, with sarcoma) they took another turn, with many ups & downs & ‘bumps in the road’ in the days since then. We don’t always feel thankful. But we often choose thankfulness. Sometimes it’s during the hard times in life, during the dark days, that you have to look for the small things & choose to be thankful.

We have a lot to be thankful for! I can’t even begin to list everything! But as we look toward this weekend, we are especially reminded of the need for an ‘attitude of gratitude’ that we all need to have, to make every day better.

Darin has had, as of today, 7 days in a row of feeling alright. Less pain in his body, a smile on his face & a wonderful outlook on his life, & all that is good in it. We are thankful.

We are thankful to be getting away for a few days this weekend, with our wonderful church family, to enjoy some time at Camp Crossroads, near Bala. We look forward to some fun with friends & some much needed R&R, where we can feel God’s presence in the beauty of nature.

Happy Thanksgiving everyone! Be sure to count your blessings 🙂