Sunday, September 27, 2009

It's my journal and I can be long-winded if I want to.

Rachael is doing fantastic.  So well in fact that both kids were driving both Tom and I a bit batty today.  They missed each other so much they haven't stopped fighting.  This morning I reminded them both of all the tears and heartbreak they felt when they were apart.  I mean Rachael was downright lovelorn... if lovelorn could refer to a brother.  Everyday we had to hear about how she misses Marc and how she wants Marc and how Marc comforts her and Marc is the only one who could possibly understand!  Two minutes into the happy reunion it's all "But that's MINE!" and "Don't touch that!" and "STOP HUMMING BECAUSE YOU ARE MESSING ME UP!!"  But they no longer have me fooled.  I just yell at them both to go to their rooms now smile contentedly when they are fighting and say peacefully, "You two love each other so much and this is just your way of showing it."

Actually, when Marc got home last night he was so sweet with her for those first two minutes.  He was super careful and concerned and actually showing interest.  But then she was acting so darn HEALTHY that there wasn't really need for all that compassion.  He wasn't there that morning when we had to remove one of her bandages and it took an hour because of the pain and screaming and crying out in agony for her brother.  He didn't witness her being unable to even push herself up in bed because just the act of moving any part of her body brought back all that hurt.  He missed the whole puking after surgery thing.  He just saw this kid who he is under the impression he needs to feel a bit bad for on some level touching his new leggos and acting all annoying as usual.

I will try to commit myself to enjoying even these times because when she starts the high dose interferon then I think he will see exactly what fighting this disease can do.  Maybe for now he needs to save his compassion.

I was actually talking to Tom about this the other night... what fighting melanoma looks like.  It is hard to not feel on some level that we have done this to her.  Her body looks almost war torn right now.  She's got the big scar on her arm, a smaller scar under her arm with a tube sticking out of her skin.  She has the catheter on her chest and another bandage on her arm where they tried to put it in and failed, a little bandaid covering her arm where the IV was and marker notes on her saying where to cut.  She's going to be scarred and everyday we have to do something to her like clean something or drain stuff or inject heparin.  And meanwhile she is doing her best to just get better and be cheerful.  And we keep interrupting her goal to move on to say, "Okay, now is a good time to put you through an hour of agony as we remove a bandage that must come off."

She didn't have headaches or a fever that wouldn't go away or a suspicious chest cold that lasted for weeks.  She was completely healthy and happy and normal with just a little mole.  And now she has been cut and poked and she can't move quite as well and I have to ask her each night if she needs codeine.  And I think it's going to be much worse in a month when we start the interferon and she feels like she has the flu everyday.  Because seriously, she is recovering amazingly well.  She will be at school tomorrow and ready to run around and wrestle again in a week.  All this to say that I have to remind myself that what she has is serious and if we had done nothing she would have died.  I have to remind myself of her prognosis which many say is great but I say is not 100%.  Fighting makes her sick and I'm so glad we don't have symptoms of her cancer, just of her treatment but it does make it hard to shake the feeling that we are doing it to her.

This morning our pastor prayed over our family and others who are in difficult situations - which was just about every person standing there and then a few members of the band played this song which was written by Jeremy Camp shortly after his wife died.  How I can relate to this....
The only place I can go is into Your arms
Where I throw to You my feeble prayers

Well in brokeness I can see this was Your will for me
So help me to know that You are near


  1. Danielle, I got wind of Racheal's condition and the ordeal your family is going through and I wanted you to know our family will be praying for you guys. Though we won't ever understand all the why's, we will see God get the glory. He's already getting the glory as the JOY of the Lord is written all over Rachel's face and bubbling out of her heart.
    Love, Cara (Greg, Grace, and Judah)

  2. Danielle,
    I have been thinking of your Rachael constantly. She seems like an incredibly strong little girl - kids handle these things so much better than adults. Hopefully the interferon goes smoothly for her, I just know she'll be fine and you'll get through this!