Our New Normal…

ethan-grade-1-pic-3

There’s really no good reason for me to share this particular picture, except for the fact that it warms my heart. Can you see the mix of sweetness and mischievousness in that precious little face? Our little monkey. Grade One. Our first year living in Haldimand County.

It was a desire to live in the community where we attend church that first brought us here. That, and the amazing reputation of the little country school our children now attend.

But it is the community itself that we have come to love.

If you don’t live in Caledonia, you might not understand. If you do, you’ll know exactly what I’m talking about. There is an old world charm to this place. Where it takes an hour to grab milk at the grocery store because you know at least half of the people shopping. Where there is an unwritten code about how traffic merges onto the main street (and its clear when someone from out of town doesn’t know the rules). And where neighbours still genuinely care, and go out of their way to help one another.

This is the place we are blessed to call home, and we could not be more proud or more thankful. In our eyes, it is the best place in the world to live.

And it is because we feel this way, that we want to share a part of our story with you that we have been struggling to process over the past couple of weeks. Because we want you to hear it directly from us, and not from another source.

A couple of weeks ago, when Ethan had his last MRI, we were thrilled to learn that the tumour appeared stable. It was a huge relief to hear that he was doing well.

His oncologist explained that the standard approach to treating a Stage 2 Glioma is to begin treatment when/if the tumour shows signs of growth. Otherwise, he shared, it is often appropriate to adopt a ‘watch and wait’ approach. The tumour is scanned every six weeks initially, and this interval is gradually increased if the tumour does not change.

My husband asked why they would not treat Ethan now. Why wait for the tumour to start growing. We just want to be rid of it altogether. To be able to say that our son is cancer-free.

“It’s a good question,” the doctor replied. “The reality is, that chemo and radiation are not able to shrink the tumour to nothing.” He went on to explain that the residual tumour in Ethan’s brain is inoperable, and that treatment for this type of cancer is only able to control tumour growth, not eliminate the tumour.

“Are you telling us that apart from a miracle, he will never be NED (no evidence of disease)?” I asked.

“The 2016 answer to your question is yes,” he replied. He then went on to share his personal hope that medical advances within Ethan’s lifetime will change that answer. That there will be a cure. That he will one day be free of this disease.

The news hit us hard. It was unexpected. Not something we had even imagined as a possibility. We knew that the road would be difficult, but believed that we would fight this monster, defeat it, and move on with our lives.

The thought of living with this forever is difficult to accept. That, at any point, a simple headache or upset stomach could mean that the tumour is growing or becoming more aggressive. That treatment may become necessary at any time. That our boy may even need to go through another invasive brain surgery and all the risks associated with that.

And then there’s the guilt.

Guilt that we are not overcome with joy at the good news we’ve received. That our minds continue to ask the what ifs, often in the dark hours of night. Guilt that we can’t seem to live fully in the moment, although we know how precious each moment is.

We tell ourselves we know better. That God is faithful and good. That we don’t need to worry. But the uncertainty weighs heavy nonetheless.

There is tremendous vulnerability in sharing my heart so openly, but I want to be real. I know that if I’m struggling in this way, there is a good chance that others may be as well. The last thing I would want to do, would be to portray a false reality where our family has it all together.

We don’t. And that’s okay.

That being said, we are being intentional about taking opportunities to make memories as a family and to celebrate this beautiful life as best we can.

We continue to be grateful for the love and support of our family, friends and community. We would not have managed to get through these past few months without you. Please continue to pray for Ethan, for miraculous healing that defies medical understanding.

Please extend grace to our family in the midst of our struggle. There is no map for the journey we are on, and we are clumsily learning to navigate this new normal.  Life, for us, will never be the same. There will be times we need to talk, and other times that we just can’t bring ourselves to be around anyone. Even we will struggle to know which is which.  At times, our kids may joke inappropriately, or not answer a question in an expected way, but they are just trying to figure this all out too. Please don’t judge too harshly.

Thank you again to everyone for your care, your practical support, and your love. There really are no words to adequately express our gratitude. We always knew we loved our little town, but are now reminded continually of why it is so great to live here. May you all have a most blessed Christmas!

Much love,
The McPhersons

 

 

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14 thoughts on “Our New Normal…

  1. Dearest cindy. ..BLESS you for honesty & transparency. I want to say I love you & every day I pray for Ethan, you &;trevor & your family. Grateful you are writing & sharing with those who care & stand with you in a myriad of ways. ❤

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  2. Hello Cindy ,
    I had come across this post and it truly breaks my heart . You and your family are absolutely amazing kind hearted and lovely people . I am so so sorry you are going through this . I pray for your son Ethan and your family . You are all such strong beautiful people who are very close to my heart and of course little Aubrie . You do so much good for this world and especially my daughter and I . I truly thank each and every one of you . All the good you and your family bring to this world is definitely recognised and appreciated not only by myself and my daughter but by god himself . He watches over yous and if anybody deserves a miracle it is your beautiful family . I pray one day this is all just a thing of the past and you can all move on and live the beautiful life you all deserve . Your such a strong women and I see all you’ve taught Aubrie and can only imagine your own children are as strong and beautiful as yourself and will fight through this . Stay strong Cindy and family big hugs from Aubrie & i

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    1. How beautiful, Rebecca. Your words have brought tears to my eyes. Thank you so much for caring so deeply, and for praying for our family. We consider it a joy and a privilege to be able to share our lives with your little one. She is deeply loved by all of us, as I know she is by you as well. Much love to you today. We pray for you as well, and hope you have a most wonderful Christmas.

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  3. My thoughts and prayers are with all of you….there is a docuseries called the truth about cancer and a book called the same by Ty Bollinger. It might be worth watching /reading. Frankincense oil might be worth looking into

    God bless

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  4. Although you have bravel, publically shared your family’s journey, it is intensely personal, private. Incomprehensible. Bitter sweet. Your story resonates with me because my children are near in age to Ethan. As moms and dads, brothers and sisters, we ache and celebrate with you. Your words are elequent and tears apparent on every post. Faith is a powerful tool and weapon. Love is medicine. Seems to me that Ethan is destined for a miraculous recover. God bless

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  5. Dear McPherson Family,
    Thank you for sharing your honest and difficult message. Its beautfulltv and eloquently written -I appreciate the way you’ve described the authenticity of your incredible struggles. I cannot imagine the journey you are travelling. We attend Gateway Church, and our daughter Emily has been in the same youth program at Ethan. Although we’ve probably never met – we are fairly new to Gateway, having moved to Caledonia about 2 yrs ago – please know that you’ve been in our thought and prayers. If there is anything you need -please don’t hesitate to let me know – albeit that I’m a complete stranger ;), but someone who cares along side our community and church family. Stay strong. Be blessed
    Marjolein Eising.

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  6. Dear McPherson Family: Your eloquence in describing so succinctly your situation is utterly admirable. We can never fully understand God’s plan for us, but your faith and trust in Him is shining through the worry, guilt and fear that you so honestly reveal. I worked in oncology for many years. I know the journey you are travelling, both personally and professionally. It is not a journey for the weak nor is it a journey one can travel alone as you well acknowledge in your honest portrayal of thanks to a community of helpers. This is how God wants us to be. A community of helpers, a community that holds their faith in God up for strength, healing and love, a community that understands that life is to be treasured and the small seemingly insignificant moments in life that give us moments of joy do matter greatly. You and your family have demonstrated all of these graces. I know nothing is perfect, but your love for each other and God will be your salvation. Please know, we are praying. God Bless. Vicki and Steve St John

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  7. Thanks Cindy. What a great description of the “now, but not yet” tension we all live in as followers of Christ. Yes the Kingdom of God is now! Jesus has come, he has died and risen so we can experience new life now, sins are forgiven now, bondages are broken, miraculous healings takes place now. But God’s Kingdom is not yet fully realized. Not every thing has been set right. And Ethan’s cancer is a real, visible, practical demonstration of that. Yes praise God for the miracle and blessing of his tumor’s growth being stopped. But it’s not lack of faith to also be disappointed/frustrated/scared that the tumor is still there. Both realities exist simultaneously somehow. It reminds me of Advent. Yes we celebrate that Jesus has been born, our Messiah has come. But we also long for the fulfillment of the whole promise. Your honesty and vulnerability is a gift for the rest of us, it invites us into that messy tension – in Ethan’s example, but also in that “now but not yet” messiness of other places in our own lives. And one of the messages from Jesus being born in the stable is that our Saviour is present in that messiness.

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  8. Sweet family of Ethan…As I ponder your words, I find that as a sister in Christ, I am able and, oh so willing, to lift you each and all in prayer to the One Who hears them. Know that I pray for Ethan and will. May God hold you ever-so-close. Caring through Christ, – linda

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  9. Well, I still believe in miracles, having experienced healing myself. But I can also understand to some degree your grief over hearing the medical opinion that you will have to live with it. You may remember that my grandson has Crohn’s Disease, and although they have found a treatment that is working so far, we remain vigilant, watching for flare-ups, and pray God will heal him in His time. I pray this for Ethan, too. Thanks for your honesty. May your times of joy be even greater and your thanksgiving that much more heartfelt because of what you have already come through by God’s grace.

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