Volleyball and Nivolumab

I have been lax in keeping everyone informed with what is going on.  Hopefully everyone understands that our every moment is consumed with finding a cure for Ben and trying to keep some semblance of a normal life for our kids.  I feel I am miserably failing at that second one.

Ben was able to complete the radiation for pain in the area where the cancer moved into the muscle. Once the first five sessions were done the pain (in that area) settled down and it has been better since then.

Ben was released from hospital on Tuesday and we were particularly excited because he was almost pain free.  Everywhere. Seriously.  It was a truly glorious moment and we were literally able to almost forget that this disease has invaded our lives. Almost.

By the time we got home, the pain was starting to creep it’s way back into our lives.  Right down Bens leg and back into his foot.  The only upside is that it skips the area that was radiated, but the damn pain is still there.  And it’s bad.  So much so that Ben was not able to make it to Rae’s volleyball game that evening.  The first in a series of games in the Fraser Valleys which lead to the Provincials.

If he had been able to come, he would have been greeted by this:

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                                                                             Jr girls volleyball

See how they have headbands on?  Well, if you look a little closer you see this:

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                                                                                    Win For Ben

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                                                                                 Strength – Hope

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                                                                           Fight for Ben

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And on, and on.  Rae’s said “Pray For Ben.”  It was one of the most moving things I have seen.  I was so touched.  Raegan was so touched.  And Ben, well I’m pretty sure that this simple act by a bunch of teenaged girls made his whole week.  Seeing the support that Raegan is receiving brings so much relief to us.  It was a really nice moment.

Oh – and they won!

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On Thursday we met with Dr K.  I wasn’t much in the mood for pictures that day.  Barb met us there and we discussed Nivolumab again, as the coverage still had not come through at that time.  In fact, right before we went into that appointment, the RCMP physician sent Dr K another email to ask him if he had applied for coverage through the Compassionate Program of the BCCA, and if not, why not.

Dr K maintained his sense of humour, even at that early hour, and replied, “because it will be turned down which is as certain as an “Amen” in the church.”  Haha. The RCMP Doctor replied that she would pass that on to NHQ. 😄

In any case, we were no further ahead by the time we met with Dr K, so I told him we wanted to pay cash for the drug so that Ben could get started, and could he hurry that along for us?  Turns out that Dr K knew who to go to in order to find the drug, but he is not allowed to administer an off label drug at the BCCA.  Politics.  So Ben has to move on to a different oncologist who works outside of the cancer agency.  I’m a bit disappointed, but so be it.  Whatever it takes to get the drug. We left the appt with Dr K advising he would see if a Burnaby oncologist would take Ben on and give him the drug.

Later in the afternoon while I was running my groceries through the till at Save On, my phone rang and I was greeted by the RCMP Doctor.  She was phoning me to tell me that coverage for the drug had been approved for four months!

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I went home to tell Ben in person.  We had a moment, let me tell you. There is nothing like finding out you get another chance at life that brings out the feelies. 

So the referral has been made and our fingers are crossed that Ben will get a call to start it this week.  The Burnaby oncologist has agreed to take him as a patient – we just need to know when he can start.  The drug will be administered like chemo. I pray this is the answer.

In addition to this good news, my ever persistent sister found some really good info about another possible option involving gut health that could be helpful for Ben.  She emailed a doctor in the States, and lo and behold she received an answer today with some great information.  I can’t imagine how we would possibly walk this path without Barb.  So grateful.  You are the best, Barb.

That evening Ben was able to make it to Rae’s next two volleyball games, and guess what?  The girls all wore their inspiring gear for Ben again!  Another sweet moment.  So glad he got to see it.

Also, Ben and Zak made it to another concert on Friday night, and I’m told they had a great time (even though Ben has been paying for it in pain ever since!). Friday was a very rough night for Ben, and it hasn’t gotten a whole lot better since.

Lisa came over again this weekend, thank Heavens.  She talked me off my roof top more then once.  Thank God for her.  Also, we were able to do this:

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                                                                             Connie, Kirby, Ben

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                                                                                  Ben and Lisa

We do love our Thai food!

When we got home that night, I was greeted by the best Facebook post ever.  The lovely Christine and Cherri recently trotted off to Maui for some sun and a 10k race.  Check this out:

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 The front of their shirts says “Saint-Onge Strong”.  The back says “Will run for Nivolumab”. Check out these pics:

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Note the heart with our initials, the guitar, the stetson, the kids initials and the word “Titan” on the wrist above.

After I saw these, I felt like this:

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 Way to go, Christine and Cherri!  And thank you!  You said you would run for Nivolumab, and we got it!

To everyone who, over the last eight months has spent time praying for the answer to cure Ben’s illness, or sending positive vibes, or looking up info in the news or on the science websites …. We thank you.  We owe a big debt of gratitude that we could never repay.  

Kirby – for all you tried to do for us this week also, I hope you know how much that means to us.  It was our lucky day when we moved to 63B.

In a week that has been filled with the horror of terrorism all over the world, I continue to be moved by how good most people are.

Thank you.

Hug your families

Wendy xo

7 thoughts on “Volleyball and Nivolumab

  1. Wendy.

    Whilst reading articles related to weight loss, I came across a blurb about a “ketogenic” diet. It uses the natural body process of ketosis to lose fat. Essentially you starve the body of carbs and the result is the body starts to burn it’s fat stores. I had used this ketosis a couple years back and lost 60 lbs in 3 months. So this article I read had a reply from a guy who had bowel and liver cancer. The doctors offered him little hope. He tried the ketogenic diet with great results. Here is his reply to the ketogenic blog…

    “At age 63 i was diagnosed with bowel cancer and secondary liver cancer and told that i could only be offered palliative care and little/no chance of a cure. In desperation i immediately started the ketogenic diet and took all the chemo they would give me. Cannot be sure what was most effective but i can confirm i am now cancer free the past nine months and on a six monthly test cycle for the time being.

    I lost about 45lbs of weight on the diet but weight loss is usual with cancer anyway. Since i was declared cancer free i have loosened up the diet somewhat but stll avoid added sugar and wheat as far as reasonsbly possible. My weight came back up to about 20 lbs below where i started and now holding that weight and in good health with BMI about 25.”

    I’m leary to share this for fear of wading into an area that I have no expertise in. However I know you are anxiously looking for any and all options.

    Asxalwaysxkeep up the fight!

    Dave

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  2. Thanks Dave. I’ve read a lot about the Keto diet in the past and it’s potential therapeutic effects. I think it all boils down to starving the cancer of sugar. Who knows. I’m no doctor. I’ve cut down my sugar intake by about 90% so that’s got to help somewhat!

    Ben

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    • Dear Ben … eleven months after you wrote this comment I am responding to you. Somehow I feel as though if I write back to you, you will read it. You died two months after you wrote this comment. Almost to the day. I miss you so much that I physically feel pain when I think about it too much. What I would give to read a snappy new post written by you on this blog. You could call it “Surprise! I’m Back! It Was All A Joke!”

      We are back in the midst of another volleyball season, and I feel your absence deeply. I reach for my phone to send you a text about how the games are going constantly. And speaking of texting, I guess Rogers finally figured out that your old phone number doesn’t belong to you anymore, because when I text you the messages no longer go through. I do it anyway.

      I talk about you constantly. I’m sure everyone we know is bored to tears hearing me speak of you constantly and seeing how sad I get when I think of you. I don’t care, really, but that is part of the reason I prefer to write to you. If I run off all my friends then I will really be alone, won’t I?

      Missing you always. Loving you endlessly.

      Your bride
      xoxo

      Like

  3. Pleasantly surprised the force came through that fast in approving the drug treatment. You certainly deserved that break! Now, hopefully they’ll deliver the stuff ASAP (in a Brinks truck, at that price!). Awesome what your daughter’s team did, as well as your running friends.

    Liked by 1 person

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