Wednesday, July 8, 2009

Back Down

Poor Ally is struggling again. I knew it was coming, but I am not glad for it to be upon us. She was pretty lethargic today, not wanting to do much. But more than that, she had several episodes of real extreme pain. To the point where she is screaming so loud that I am wondering if the neighbors hear us. And there is nothing I can do to stop it. I feel so helpless. I feel bad for her and then I feel bad for me...and then it starts this whole downward spiral. I start to question whether I have the strength left in me to make it 11 months of intense treatment. (and then many more months of maintenance)

I am tired today. I had a bad night last night, not falling asleep until I saw the clock turn 4am. I am usually not too bad like this, but last night I was. It was not Ally causing me to stay was me. A local boy here, Blake Laforce, just died the other day and he had ALL. He had received a bone marrow transplant and had some delayed complications. I heard about it on Saturday and it has really bothered me ever since. Always on my mind. I don't even know him, but I feel like I do. I started googling his name and found some great stories in the Dayton Daily News. He had a huge army behind him, just like us. A great family, it seemed. He was 18 when he died, after having the ALL for a year and a half. Then I stumbled upon the blog that his Dad kept for him. He was real diligent about doing it, just like me. Over 100,000 visits to his blog! It was over 100 pages long, and I didn't read it all, but I kept looking for similarities etc. I think I was torturing myself. I couldn't figure out why he needed the BMT, and I worry that we may have to go down that path. So then I started doing even more research on the BMT from my books and stumbled upon the potential life long side effects from having cranial radiation. And that part we do have to do. See the downward spiral that I sent myself on? I am like a gerbil in its little running wheel and I can't get out. And I can't turn off my mind and go to sleep like a normal person. And then I start thinking of weird stuff ...someone told me yesterday that those little baby carrots you buy in the grocery store are soaked in some crazy bad-for-you preservative and never to eat them again. Come to think of it they do taste a little different than say a regular carrot with the nice green tops. And to think, those tiny little things...that is what I used to worry about....


  1. I hate to hear that she's in pain again. I was afraid of that coming back. They say the chemo doesn't create that pain, but to me it sure sounds like it does. As long as it just continues to be a side effect and nothing more...

    I just read that boy's obit in the paper the other day. Gotta remember--two things he didn't have on his side were his age and his gender. I don't know why it didn't work out for him, but he is a completely different person and you can't dwell on the fact that he didn't make it. Easier said than done, I know. It's horrible he didn't make it and I was quite sad to read of that, but you gotta keep doing what you are doing for Ally and I think you can't do any better. Remember the weekend she just had--she'll have more days like that again soon.

  2. I don't like to see Ally uncomfortable either, and we all wish we could change things for her. Remember, she is a strong fighter and she has purpose here. So do you. Try to focus on that during those rough times. Also remember that you are doing the best you can and you didn't choose this situation. We are all still supporting you.

  3. Janel, I wish to God that you could just be worrying about baby carrots right now ... But it's unfortunately the path of another person to worry about little orange food while you are worrying about your daughter.

    First, each person's story and body and path is different, so comparisons of any kind don't really help. Second, while you found the sad story of that local boy, you could also go out and find hundreds of stories with happy endings. In fact, I started googling them this morning and it was not hard to read paragraph upon paragraph of positivity ending with a cure.

    Of course, I know you know all this, and it's okay to feel down-and-out and sorry for yourself. Just let the Army and your inner strength and your faith always pull you back up to a good place. We love you all so much, and Ally WILL beat this. She will.

  4. Janel and Jared, have your moments of sadness and weakness, you are entitled to them. They will allow you to clear your minds and hearts and move on to the next day. Rely on your family and friends, that is why they are around. Take each day as it comes and be grateful for the good ones. You guys are surrounded by love, remember that.

  5. Janel...

    I don't know if it helps to know...but we each in turn have suffered walking those dark sides of the street...where sleep won't come and fear is our constant companion. When that dispair sets in just remember what a really wise and wonderful friend once told me..."if worrying did even this much good"...(hold out your pointer finger and thumb a wee bit apart...) "I'd do it"...Cancer may have known lots of people...but it's never met Ally before now...and the Dr.s, and experts, and charts, and probibilities should all be thrown aside...she will fight it...and she will win...maybe start planning the remission celebration when those fears start to creep in...We'll all be there...and Ally will run the snack shack...and we'll all hand over our money to her...and the proceeds can go to research to cure other little kids...come on let's start planning it!!!! Who's with me?....

  6. Janel
    I am sorry to see you and Ally in such pain but Ally is different than that little boy, age and gender, and a real fighter. We will win, the hardest thing to do during this fight is not to play the "what if" game. You can never win at that one, I know, believe me, that is why it is so important to live one day at a time. I know easier said than done. When that becomes too difficult look back and see how many challenges you have met and conquered and remember the good days you have had, there will be many more. You are strong and you are doing a wonderful job, both you and Jared.

  7. Love you, Janel. Love to Ally. Love to your family. Wishing you peace and a little sleep.