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Wednesday, June 8, 2016

Even Less Sugar: The Post We All Knew Was Coming

How do I write this post? Is there a gentler way to say we have reached the end of things?

Ian's last appointment showed no tumor growth ... however it also confirmed what the doctor suspected; the immunotherapy drug has had no affect on the tumor, and Avastin, the anti-swelling drug, is all that is keeping it at bay.

"And tumors figure out Avastin rather quickly."

Quickly, as in months.

So there it is: we have months.

We will continue to receive MRIs/treatments every two weeks, as Ian's able to tolerate the travel and desires to do so. At some point those treatments will not be beneficial, either, but I think we do them as long as we can. 

When the tumor starts to ignore the Avastin, decline will take weeks. There will be further cognitive and mobility decrease, but not necessarily any pain (at some point one would think the pressure would cause pain, but I'm unclear on that).

Yesterday was a decent cognitive day for us ... which meant a good talk, although it meant a substantive talk, as I have to take the opportunity when it arises to talk about important things ... and so it was a tearful talk. We went over the past year, as he remembers none of it. I showed him pictures on the phone that went along with events, both in and out of hospitals. Goat, I read your fb post following the reunion dinner; he said thank you many times and wept.

Monday there was a (no kidding) murder on our street. It was quite the distraction from the reality of our situation. All the commotion and excitement gave the kids some breathing room after I sat them down and discussed our coming weeks and months. 

MY KIDS ARE AMAZING.

I am tired.

But we press on ... this is not "news," even in its finality. Ian does not fear death and awaits meeting his Savior. He's just a little sad.

What can you do?

* Check in on us. If you've "been meaning to visit," do it soon
* Shepherd the kids. Please treat them like NORMAL KIDS plus a little tenderness. You don't need to "be sure they know you know" or are available to listen - they know Mom gets the word out and most people know. Don't ask about their dad. You can ask about summer plans, school in general, books, legos ... You can say, "how are YOU doing?" and give a glance ... But then let it drop. You don't have to "watch what you say" but if you could avoid talking about cancer or funerals or that type of thing, that'd be super.
* Fill needs as they arise, when you can (rides for the kids when I can't leave are most needed over the summer, and distractions for them as well, especially when things go "bad").
* Sometimes I need to blow off steam. Sometimes I do the ostrich thing, sometimes I do the sleep all day thing. Sometimes I really need some funny. (Really, I can almost always use some funny.) I know you don't know what to say. That's okay. Say it anyway - I promise nothing will be wrong. You can't help you don't know what I'm going through, and I wouldn't want you to. Just don't be silent for want of what to say.

If you want to contribute tangibly, I think I singlehandedly keep amazon.com in business .... we can always uses GCs to that and Giant Eagle. We don't get out much, so GCs to local restaurants aren't of much use right now, and people are generous with providing us meals. Special porch treat surprises are always a beautiful hug for the day, as are flowers, now that they're blooming. Cards are MAIL! which is always good.

Be kind to one another. Small kindnesses and smiles. Keep perspective, in Ian's honor, about what matters, who matters, how you can show love to your fellow man. Hug your kids, smell the flowers, breathe the cool air. Ian would not want you to be sad for him, he would want you to wrap your arms around us and keep us afloat, and to pour out God's love to one another.

3 comments:

  1. Do not know what to say Rachel, I wish you peace and your family what joy you can garner out of this, and want you to know I am here to scream and holler. God bless you all

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  2. You have beautifully written one of the hardest things to express in your situation. I love how you are so kind to us, letting us in and know what can be done for your family! I wish I was there to walk with you. God continues to bless through the hands and feet of His church!

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  3. Rachel, I can only say that my heart is leaping out of my chest for you all. I think nothing but sweet things about you and Ian. I'm so sorry this is and has been happening. I have prayed much for you before and am doing so again. Much love to you and Ian, Lucy, sister in the Lord

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