Here we go again … turn, turn, turn …

And a time to every purpose under heaven, right?!

Just when we thought we had a treatment plan in place last week & that we were finally moving forward in dealing with Darin’s cancer … our path twisted … again.

Even though we felt ok with the plan in place (admittedly a little leary about certain parts of it), given the information we had about the options that were presented, we decided to go ahead with one last consultation at Princess Margaret with yet another sarcoma specialist. Boy, are we glad we did!  While we’d been told that because of the lack of funding & research into sarcomas (because it’s sooooo rare – only 5% of all cancers!) there are no clinical trials available … it turns out, there are! Good news at last!

So instead of “treating the symptoms” (i.e. tumors only) with radiation & (invasive) surgery, Darin will (more than likely) qualify for Immunotherapy, to treat the disease of sarcoma, instead of just the tumors. Systemic treatment for wholistic healing … sounds so much better to us 🙂  Let’s try & put off the other treatment as long as possible.

The down side is the preparation for it … waiting … again. New hospital = new doctor = new battery of test/scans, etc. which means the actual treatment, by IV injection once every 3 weeks at Princess Margaret, won’t actually start for another few weeks. Ugghhh 😦  God really is teaching us patience … along with a lot of other things. Some days are better than others. But we put one foot in front of the other & rely on Him for strength for each day. Thank you for journeying with us. Your support means a lot.

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Yet another turn …

We are now facing a new (to us – actually the more conventional regimen for many) type of radiation treatment. After a meeting with our radiation oncologist, we found out that Darin will have 5 weeks of radiation treatment, 5 days/week, starting in 2-3 weeks. Woah. Not really what we were expecting … but, OK. The actual treatment time is quite short!   10-15 mins & he will be on his way back home again. A new day-to-day routine.

That will be followed by 4-6 weeks off (yay!) … during which time there will be a “re-staging” of the situation (more tests, scans, etc.) in preparation for surgery. Then, Lord willing, he will have surgery to have the tumour in his upper back removed … which will be followed by 3-6 months of recovery time …. including lots of rest, no work, no piano playing 😦 …    & eventually, physiotherapy, & a return to “normal” life.

Certainly a different plan for this summer/fall/winter, for all of us. Lots of uncertainty, for sure. But also … hope. Hope that the disease in Darin’s body will be reduced or even eradicated by this treatment. Hope that following all this treatment, he will be physically & mentally well enough to return to doing some of the things he enjoys, including work, working out, maybe going back to school(?) & playing the piano 🙂

In the meantime, we remain thankful … for a kind, caring, personable surgeon that Darin feels he can trust. Thankful that his employers at Columbia Sportswear are very understanding & accommodating to his ever changing schedule. Thankful for friends & family (that’s you!) both near & far, that are supporting us in so many ways on this difficult journey. Thankful to God, for being our strength & comfort, hope & peace in these days.

 

twists & turns = thankful

After the bumps & bruises & twists & turns of last week … we enjoyed a relaxing weekend at home. We were still reeling from the new diagnosis. Processing new information. Formulating new questions. But life goes on … & we are thankful.

Thankful for beautiful, hot, sunny weather.

Thankful that we have a nice yard with a great pool to cool off in.

Thankful that Darin had minimal side effects from 1.5 hour sessions of radiation treatment, 2 days in a row, where he had to lie perfectly still (strapped in), while a big machine moved around his body, shooting lasers(?) at the tumour on his spine.

Thankful for our dear friends Fred & Deb who agreed to let us use their trailer in the Kawarthas for a couple days of much needed R&R this week.

Thankful that the sarcoma specialist we met in Hamilton today provided a surgical option for the tumour in Darin’s upper back (under his left shoulder blade). He may not need chemotherapy right away! They are hopeful they can remove it &/or treat it with radiation, monitor it with scans & postpone further treatment for now.

Thankful for the power of prayer & positivity among our many friends & family members who continue to reach out to support us on this difficult journey. You are amazing.

And of course, thankful to our God who loves us more than we will ever know. As long as we “fix our eyes on Him”, we can “hold fast” to that truth, & handle whatever comes our way. In God we trust. Every day.

 

bumps & bruises … & blessings

Wow. Wow. WOW … WHAT a week. Well, what a few days actually … with each one comes a new twist & turn in our story. (Sorry in advance for the lengthiness of this one!)

First, Monday … we learn through further discussion & proper explanation from our oncologist in St. C, that we don’t need the biopsy results to begin the screening process for the immunotherapy clinical trial at Princess Margaret. WHAT?!? Well, OK … that was a lot of time wasted … 😦

So Tuesday … Dave & Darin make a call to Princess Margaret, & are offered an appointment that afternoon(!) … where first they get the (negative BRAF) biopsy result, confirming the need for immuntherapy, not targeted therapy in St.C like we had hoped for. They proceed to learn more about that treatment & sign the consent which furthers the process for approval for the clinical trial. BUT, are also told there’s one more part of the puzzle they’re still waiting for. They need to rule out something called ‘clear cell sarcoma’. It’s very unlikely, & they’re quite sure it’s not that. Mostly because I’d never heard of it before, I google it … bad move 😦

Wednesday (which over the last few weeks has always brought us difficult news) brings another shocker our way … Darin’s initial diagnosis of metastatic melanoma was wrong. He has clear cell sarcoma (an extremely rare cancer of the soft tissue). WOW. 6.5 weeks later … we get this very DIFFICULT news. WOW. We are shocked. Again. And saddened. Angry. Dismayed. For me, the tears flow. We are unsure of what to say or do.

For Darin, he puts on praise & worship music, which soothes his soul … & of course is ultimately good for all of us. And so we soldier on … knowing God is with us. Around every corner & through every dark valley.

Thursday brings us to radiation treatment day 1. Darin is upbeat & positive .. & it rubs off on me. He is amazing. Everything goes smoothly & we are thankful. For so many things. But mostly for that peace that passes understanding, which only comes from our Great Healer … Emmanuel. God with us. It’s true. Every day. Darin is in the best hands.

Another bump … Another delay

To say we are disappointed is an understatement. Frustrated too. Doubting our decision-making ability too. Plagued with questions … Why? Why?? And yes, muttering a few choice words under our breath as well. This process it taking way too long! 😦

While we just wanted to get through this week to get to our results day on Monday, July 4th, we got the dreaded phone call to say they won’t be back for another 2 weeks! The biopsy samples went to Toronto & the investigation of them takes 10-12 business days. Grrr … And treatment options can not be determined (let alone started!) until the results are in.

So … we wait .. & wait. Again. The waiting is so hard. I find it takes a lot of energy to wait. We have to willfully set our minds on other things. We have to keep busy with activities that don’t let our minds wander off track. We have to find the good in every day & be thankful.

Most importantly we have to focus on what we know … that God IS IN CONTROL. Period. End of story. As much as we don’t understand why certain things are happening the way they are, we choose to trust Him. He loves us & His ways are right.

So while we celebrate Darin’s 21st Birthday tomorrow, we will choose to be happy. Each day is a gift, and our precious son knows that better than anyone right now.