Wednesday, April 30, 2008

Roller Coaster

First, as they say, you cry. Too true. And want to scream. And feel like it might really be possible to die from emotional pain.

And then you the pain becomes normal and bearable. You can't get rid of it, but you can put it in one corner of your heart. And your heart still keeps beating. So you can go on.

And so you do go on. You get information, set about making a plan. And just having a plan feels so good, you can even forget that the pain is still hanging out there in that little corner of your heart. Because having a plan means that maybe this will only be for a period of time. It won't be for the rest of your life. And she can survive. So you can survive. It'll just be the new normal.

And then you start connecting the dots. You find another Wilms' family, who did the same plan. You read her journey. You read about 13 hours of waiting, just for a room on the cancer floor to get chemo. You read about a much anticipated trip home for Thanksgiving ... half an hour on their way, they got the call that his counts were too low. They had to turn around. You read about pain and vomiting and hair loss and weight loss and horrible mystery infections. And you say:

Holy Shit! My child has Cancer! AGAIN!

Again, yes again. You have done this before. You are older and wiser. So is your child; this time, she'll know what's going on. So you find videos and talk to the Child Life specialist, who gives you the book Oncology Stupology for your child. You read it. It's a great book, honestly reflecting the feelings of the cancer kid. And you cry. Because there it is ...

My child has CANCER. AGAIN.

You remember the string of candlelighter beads you began stringing for her last time "for a souvenir" of this journey that she wouldn't remember. Well. Now you will buy more beads, ones that you can hand to her as she accomplishes each little step. You go through the beads, doing the math. How many hospital admissions? How many finger pricks? One for hair loss, one for relapse. One for "birthday on chemo." 20 for chemo course. Others, you make guesses. How many blood transfusions? How many additional admissions for infections or dehydration?

You try to be conservative, and then it's time to pay. $45.37. Not counting shipping. For beads. Beads that, for the most part, are less than .25. It's just that you're going to need a whole lot of them.

A whole lot of them because .... MY CHILD HAS CANCER. AGAIN.


JCF said...

My prayers for you, and your Little Warrior

JCF (wandered over from MadPriest's, via Earthbound Spirit)

Christine Robinson said...

Oh dear God, this is so painful...

long pause for kleenex break.

But what a wonderful idea, the beads.
Each of them should be a diamond.

FranIAm said...

There are no words really- there are so many prayers, for your child, for you.

Over from MP's via Earthbound Spirit with prayers of healing, hope, consolation and more.

Anonymous said...

Another visitor from MadPriest's blog.

Prayers and more prayers.

Tracie the Red

ms. kitty said...

What a great idea, the beads! I'm with Christine, they should be diamonds. All prayers going for you.

Earthbound Spirit said...

LE - Um, I hope you don't mind that I asked a whole other community of folks for their prayers. My philosophy is there is no such thing as too many prayers, or too much support. Continuing to hold you in the light - love the beads idea, just too damn bad it has to be done again.

eileen said...

I'm here from Mad Priest's via Earthbound as well. And like Fran, I know there are no words, so I'll offer prayers.

Prayers ascending for you and your Little Warrior.

Nancy said...

Crying with you tonight.