Saturday, October 10, 2015

Surgery update and Fear.

Watts' surgery went well, friends. Watts was calm and peaceful the entire pre-op time and never asked for anything to drink or eat. We were unable to get blood-return from his port, but even through that, Watts smiled and charmed us all. Our last glimpse of him, he was being walked down the hall by the anesthesiologist with his surgeon following behind, running his fingers through Watts' hair.

The port gave the surgeon "a run for his money" and required an extra incision to remove it, but the port was removed and Watts did beautifully.

Watts is now back to his normal speed and apart from some discomfort from his port-site, is completely back to normal. We are so very, very grateful.

 I began writing the post above about a week ago but haven't been able to post it because I've kept writing and erasing, writing and erasing. 

This pediatric cancer world is a hard one. There is beauty in the faces of the little warriors and such joy in milestones reached, but there is also such darkness and brokenness and pain. On the same day as Watts' milestone surgery, another little girl at Brenner relapsed. Her diagnosis is the exact same as Watts' and she is only four months ahead of him in post-treatment. We are aching for their family. And hoping! And praying! But, first and foremost, aching...because this is not at as it should be.

Fear has been at my heels this week and I've been wrestling again through what it means to trust Him, what it means to live without fear in a painful, broken world, and how to let go of the grip I want to pretend that I have on my kids.

It all seems a bit beyond me and I feel like a small child, terrified of the dark, watching the sun set out the window.

I've written a page-full (that I'm now erasing) about the Lord and the Gospel and the darkness but I would simply be preaching it to myself and, if I posted it, I'm afraid it would seem as if I have this all figured out, which is not true. There is so much wrestling still. Daily, hourly.

The hymn below is one that we sing over Watts each night. It's lyrics are powerful and a beautiful reminder to our fearful hearts... And a reminder that perhaps it is when we feel the most like little children, desperate for our Papa as the night falls, that He has the most room to work and be glorified in our lives. Abide with me, Lord.

Abide with me; fast falls the eventide;
The darkness deepens; Lord, with me abide;
When other helpers fail and comforts flee,
Help of the helpless, oh, abide with me.

I need Thy presence every passing hour;
What but Thy grace can foil the tempter’s pow’r?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness;
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies;
Heav’n’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.

Thursday, October 1, 2015

Port-removal Surgery

Tomorrow morning Watts' is scheduled to have his surgery to remove his port (some cancer moms call this the "de-port-ation"). This surgery should be uncomplicated and brief, and we'll be home in time for Watts' nap, Lord-willing.

This surgery is monumental for Watts and is being done in hopes that all transfusions and treatment is behind him for good. At least that is how Michael and I are viewing it! His surgeon said something to the effect that Watts isn't using his port enough to warrant the risk that having it in brings to his little body (bacteria being introduced each time it is accessed, blood stream infections, etc.). So there's that side of it too.

After the surgery, a few things will change in Watts' post-treatment care. Watts will have his finger pricked at Brenner for his labs instead of accessing his port each time. His surgery will also change how we will respond to fevers at home. In the past, whenever Watts had a fever of 100.5 F or higher, we had to take him to Brenner to start antibiotics and have his labs checked and blood cultures drawn. These ER trips would typically turn into long stays because his counts were so diminished (and his team would want to keep him until his counts started to recover) or because a few times he had growth in his lab cultures that meant there was some sort of blood stream infection going on. Now that Watts will be without a Hickman line or a port, his risk of these infections drops dramatically, and we can start monitoring fevers at home.
Overall, we are thankful to be at this point and plan to celebrate this milestone once Watts feels up for it after his surgery! Please do still keep us in your prayers tomorrow. For Watts and his little heart to not be frightened as he heads into surgery, for Dr Pranikoff's hands to be steady and for there to be no complications whatsoever, and for Michael and I to rest our nervous, weary souls in Him. He is faithful and He is good.

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