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 🙂

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 🙂