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Wednesday, June 24, 2015

The News

I have to write this I have to write this I have to write this. So here it goes. 

We had our meeting with the oncologist today. Because of Ian's current symptoms (speech deficit, numbness, etc) he wanted to check for a stroke.  

He found zero evidence of a stroke. There IS some swelling. But what accounts for the current deficits is, in fact, tumor growth. This means that within the two weeks since the last MRI, the tumor has grown enough to cause this issue. It is large and on the move.

Preliminary pathology says we think this is still a grade III, not yet a gliobastoma (grade 4). But treatment is the same; based on the speed of growth, he will do chemo and radiation right away. Like- chemo tomorrow if the pills are in. 

The rest of the story: the only data we have on recurrence re-treatment is a 30% chance of shrinking /preventing continued growth within 6 months. 

If that sounds like an equation you can't decipher, it kinda is. So I'll put it this way: we have a 30% chance of postponing the inevitable and perhaps improving his current symptoms of not being able to talk. 

As I type those numbers, I'm fully aware that he has beaten SEVERAL odds. It's just that ... You didn't see the doctor's face. 

How can you help? I have no idea. We are planning to attack the tumor with all guns, believe God can do a miracle, and try to do life well with one another. But we are also getting affairs in order and trying to fathom preparing the kids. 

There will be rides to radiation needed, we will need outings for the kids, either to give us or THEM a break from this bleakness. 

Please don't avoid us. Please don't worry about not having words. There aren't any. We all want to see you. Come and visit. I won't pretend to care about trivial things, but sometimes they are good, needed distractions. I'm an introvert, but I don't want to be a hermit. You can maybe prevent that from happening. 

I'll try not to be shy about asking for help. But you can check in sometimes. I might not even know what I need. Random acts of kindness are always in style. And please don't take this the wrong way; I'm all full up on dessert. 

4 comments:

  1. Dear, dear Rachel. I know you don't even know me. I know Dad and Mom......since college. My heart breaks reading this news, but I am a total belief in not limiting God (and I know you are NOT doing this), so my prayers will continue to be made for complete eradication of all cancer cells in his body, with Jesus as the physician and God's will being the main factor. I live in Homer City, PA, near IUP where we all went to college. My number is 724-479-8742 if you know of any way at all that I can help you or your parents. I've been praying an average of ten times a day since this began and I will definitely continue. And after praying for Ian, I pray for all the rest of you. God bless you all, you are strong, faithful people and I have admired how you are dealing with this so much. The fact that you can write this blog is a sign of your God-given strength. I'm happy you have the parents you do.....they are good, solid, God loving people and you can rely on them. I have many health issues that do not allow me to make trips, etc., but I sure am willing to do whatever I can to help you. Attempting to locate people, etc.....anything in the written mode, I'm good at. If you need phone calls made anywhere and you don't have time, send me a list and the numbers and what you want said, and I'll do it. beckyevans1@verizon.net I have been reading your blogs as you write them and will continue to do so. I'm glad you chose to do this as it is a marvelous outlet for you and a great way to keep others apprised of what is going on. God bless you, this isn't over. God has the final say and so far, He isn't talking. Walk His road, I know you do. Blessings on you all, I will be staying in touch with your parents and possibly with you through this blog. Rest as much as you can. God bless you. Becky Evans

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  2. We will pray with you and for you--you are never alone in this! Leslie and I pray for Ian's healing--and yours! (Yes, you need it too.)

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  3. Rachel, I do want to come and visit. I do want to take the kids for an outing. Every day! Please pick a day or I'll show up tomorrow.

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  4. Rachel, this is Dale.
    Once my daughter, Erin, was very ill with Crohn's Disease. For a prolonged period of time, she could not keep any food down. For months we took her to doctors and for tests, but they could not nail down where the problem lay. She kept losing weight.

    Eventually, at the end of one doctor visit, I said to the doctor, "At what weight do we get in touch with you because it is a crisis?" The doctor replied, "We are at that point now." So rather than leave until the next appointment, I prompted him, "So what do we do about it?" This forced him to do something, rather than send us away until the next scheduled appointment.
    They did then locate the probable problem, performed major surgery, and saved her life.

    So why do I tell you this story?
    1) Ian was speaking normally after the biopsy.
    2) Ian has difficulty speaking now.
    3) You talked with the doctor yesterday about pressure on the brain, and the medication that Ian is already taking to counteract the pressure.
    It sounds like the doctor relates Ian's current problem to pressure-on-the-brain.

    I believe the question is this: How long should we wait before pressing the doctors with the question "What additional measures can be taken to alleviate the pressure-on-the-brain?"

    Please forgive me for butting in. This approach worked once for me, and I have thanked God many times since for it. Just keep it in mind for when you may think it appropriate.
    All our love, - Dale

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