Thursday, March 11, 2010

Waiting...

I don't like suspense. If Texas doesn't have a big lead going into the fourth quarter of a football game, I have a hard time watching...and that's just a silly football game. Wondering what is going on in Jordan's body and waiting for the results is creating a palpable anxiety. As much as I try to distract myself, I have a hard time focusing on anything else...I doubt hardly a minute passes without me thinking about it. My stomach is twisted and my shoulders are knotted. I am way more of a spaz than usual. I should (and hopefully will) get more comfortable waiting on the scans and results because Jordan will be having them every three months for quite awhile.

When Jordan was originally diagnosed, neuroblastoma was not even in the realm of possibilities I was worried about. Hearing that word for the first time....such a scary, ugly word...it was shocking. To try and prepare for the results of these scans, I made myself think of all the options and what they would mean for Jordan and how it would feel to hear them, the elation or the disappointment...trying to lessen any shock value. It's not that I'm not thinking positively...in a lot of ways I think I am a little foolishly optimistic...I'm just trying to prepare myself and lessen the power of the suspense.

In my mind I sometimes think there are two types of results, good and bad....no evidence of disease (NED, remission in neuroblastoma world) or disease. But I have read enough stories to know that there a lot of different possibilities and that each child's case is truly unique. I have read stories of children that were NED after induction but relapsed three months later....I have read stories of children that took a loooong time to get to NED but years later are still doing well. I would, of course, love for Jordan to be NED but even if she needs more chemo or some other treatment, it doesn't mean she won't get to NED at some point.

There was an older neuroblastoma patient, a man in his early twenties who relapsed after more than a decade as NED who said he didn't worry over the results of his scans...his worry would not change what was going on inside his body and he relied on God to help him through whatever the scans revealed. I didn't state this nearly as eloquently as he did but I think of his bravery often when the worry gets consuming. Another friend, both of whose parents have battled cancer, recommended repeating a bible verse over and over during times filled with anxiety. Today I was focusing on John 14:1, "Do not let your hearts be troubled. Trust in God; trust also in me." And then there is my precious child who really has no idea what is going on and was just excited to get to ride the trike in the playroom and look at the aquarium....she is not worried, she just wants to play and cuddle and I try to focus on that.

Today Jordan had the CT scan and MIBG injection. We had minor trauma when Jordan refused to drink the CT contrast solution and had to be pinned down and forced to drink it, one ml at a time....but at least she did not have to get a tube down her nose. Despite this and not getting to eat until almost 2:00, Jordan did fantastic. It was a very long day in NYC and we have another tomorrow for the MIBG scan and bone marrow biopsies. And then more waiting for the results next week...

8 comments:

Erin said...

God is good...all the time. We may not understand his ways along the journey He has chosen for us, but we must trust in Him always. I am thinking of you today and praying for strength and courage for both you and Jordan. :-)

Beth said...

Continuing to pray. Thanks for updating. Yall are on my mind a lot. Big hugs....

Dezzy Lou Where Are You said...

Waiting has to be so tough. We are all always thinking of you and keep Jordan in our hearts!

Donna Ludwinski said...

OHHH! I am so behind on blogs...and checked yours today (google blog alerts!) ...very VERY touched by your reference to the "brave" young man....immense blessings, peace in the tortuous waiting process....and fervent prayers for JORDAN!!!!!!!

LOVE!

Allena said...

Not that it's anywhere near the same, but when I was going through post-partum anxiety, I focused on a few prayers.

First, the serenity prayer.

Second, Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6

Third, Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Phillippians 4: 6-7.

Constant prayers for your family!

Michelle said...

Praying, praying, praying. And i'm sorry for the sucky waiting....i can't imagine how that feels. Hope the rest of the tests, biopsies, etc. in the next few days are as smooth as possible. Please let us know when you hear something.

Maria Parlapiano RN IBCLC said...

If Jordan were able to tell you exactly what she needed from you right now, this would be it: Someone who will stay and not go away. Someone who will accept and affirm; someone who doesn't demand courage of one who does not understand her enemy but who offers her own courage so that burdens are borne together.
This is a "tough order to fill" yet you do it everyday!

Maria - Postpartum Place

Ken Wong said...
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