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Friday, November 29, 2013

Choosing Gratitude

“I will sacrifice a thank offering to you and call on the name of the Lord.” Psalm 116:17

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“In everything give thanks: for this is the will of God in Christ Jesus concerning you.” 1 Thess. 5:18

As you well know, yesterday was our nation’s official holiday dedicated to “giving thanks.” No doubt, our culture has warped it into a holiday of gluttony, football and discounted shopping, but we all know the real reason for celebrating on the fourth Thursday in November – it’s to slow down, surround ourselves with loved ones and express gratitude.

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I have to admit, yesterday was filled with a mixture of emotions – most of which were not warm and fuzzy. It was a sobering day for me. One in which I reflected not only on the past year but also on my entire life . . . wondering if this would this be my last Thanksgiving, desperately wishing for my old life with it’s petty, but seemingly-so-real-concerns. (Looking back, all of that was child’s play, and goodness, I was craving child’s play again – the easy stuff.)

I realized, deep down, there just wasn’t much in my heart wanting to give thanks this year, at least not for the cliché things for which we always thank God (salvation, forgiveness, freedom, peace, family). My heart didn’t want to thank Him for those things because I simply wanted my life back – my healthy “I can pretend I’m in control and take all sorts of things for granted” life back. No doubt the things for which we give the greatest thanks are incredibly important things, and I by no means mean to discredit them. They are things which we – which I – have not merited in any way shape or form. However, my heart just wasn’t there yesterday. It was mostly sad – grieved – still mourning where I am, what I’m facing and the unknowns I’m yet to face. And if I tried to move my thoughts forward, the constant pain in my body reminded me of the cancer – the Stage IV, metastatic, rare cancer.

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So, I decided to pick-up a book that changed my life two summers ago called Choosing Gratitude by Nancy Leigh DeMoss. It was the summer after my 2nd miscarriage and I was struggling with the loss and the reminder having babies is no simple task for our family. And yet, a baby is all my heart desired – Chris too. Why would the Lord rob us of this gift . . . again? I knew I needed to read a book focused on “giving thanks in all things” because my heart definitely wasn’t there especially when I was surrounded by blooming bellies, none of which were mine.

It was good to reread many of my underlined and starred paragraphs. It was good to be saturated in Truth. It was good to be reminded of Psalm 116:17 – that giving thanks is referred to as a “sacrifice.” Why? Because it costs us something. We have to die to ourselves, our dreams, our preconceived ideas of how life should (and must) be. With that, I wanted to share a few excerpts from DeMoss’ book because she shares far more eloquently than I ever could. Perhaps you had a rose-colored Thanksgiving, and I’m glad you did. But perhaps, the circumstances surrounding this Thanksgiving made “giving thanks” more challenging than before. I pray DeMoss’ words and God’s Truth will encourage your heart as it did mine, so that regardless of where we find ourselves at the end of 2013, our hearts can say, “Thank you Lord.”

DeMoss recounts an incredibly horrific and terrifying experience of Helen Roseveare, a medical missionary to the Congo during the 1950s and 60s. Roseveare said in the midst of the ordeal, she heard the Lord cry out to her, “Helen, can you thank me?” She knew God was not asking her to thank Him for the evil, but the question that came to her heart was: “Can you thank Me for trusting you with this experience, even if I never tell you why?”

DeMoss continues . . .

Thanks-giving indeed comes at a cost.

The cost comes in different shapes and sizes and may be greater or less in different seasons of life. But we live in a fallen, broken world, and every season has its share of trials, ranging, as Elizabeth Elliot has said, from “traffic jams to tumors to tombs.” . . . (p.138)

The choice before you and me today is: Do we only give glory to God for the part of our life that’s going the way we want? Or do we worship Him, trust Him, and give Him thanks, just because He is God – regardless of the dark, painful, incomprehensible places we encounter in our journey?

Look, it’s sacrifice either way. If we go on without gratitude – choosing to be bitter, constantly bemoaning our fate – we force ourselves to live in already unhappy conditions with the added drag of our gloomy disposition. Unwilling to stay mindful of the blessings we enjoy in spite of our difficulties, as well as the strength and sensitivity God grows best in us through hardship and loss, we sacrifice peace. We sacrifice contentment. We sacrifice relationships – and freedom and grace and joy.

I have learned along the way that, regardless of how I may feel, anything that makes me need God is (ultimately, in the truest sense) a blessing. Be it disappointment. Be it physical suffering. Be it mental or relational anguish.

And if you must go through what you’re facing now anyway (should God choose not to lift it miraculously, which He can always do and we are always free to pray for), why make it even worse by withdrawing from his grace and fellowship, enduring life on the raw edge without relying on Him for help? Why not see what could happen if you let the pain drive you closer to His side?

Yes, to give thanks “in all things” may require sacrifice. No, it may not change your situation, perhaps not even a little. But it will put you in the only possible position for experiencing everything God desires for you throughout this hard stretch of life. (p. 140)

DeMoss challenges the reader at the end of her book that in our lives, We can go surrendered and willingly, trusting God and His higher ways, or we can go kicking and screaming. The choice is ours.

So I say to you, and I say to myself: let’s go humbly, in faith, and on bended knee. And for our own good and His glory, let’s go gracefully . . . and gratefully. (p. 157)

This is my prayer as I move forward . . .

Oh Lord, please forgive me for so often being forgetful of Your goodness, for acting as if I deserve anything more (or different) than what I have received, for sinfully comparing myself and my blessings with others’, for being oblivious to so many expressions of Your grace, and for allowing roots of pride and ingratitude to grow in my heart.

Forgive me for the many times and ways I reflect negatively on Your character and Your goodness, by verbalizing discontent and murmuring to others.

Grant me a spirit of true repentance and a heart that is always abounding, overflowing in gratitude toward You and others. (p. 58)

I know this won’t be easy. Ever since my diagnosis April 12, I’ve struggled with saying “Thank you, Lord.” But, I pray this will become my default not because of how I feel or for even what He’s done. I pray I can simply thank Him out of a heart of trust and for who He is. And, in the end, I pray I will be fully convinced -  He is enough. Happy Thanksgiving to you and yours!

Tuesday, November 26, 2013

Making memories

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I promised a post dedicated to Alexa Hope and (drumroll) here it is! I am horrible at Facebook, but I’ve noticed people posting things for which they are thankful. I am going to do my best to devote this week’s posts to gratitude. One thing for which I’m always thankful – much more so now – is making memories, especially with my family (i.e. – precious Alexa Hope). We’ve made some pretty special ones this Fall from pumpkin patches and pumpkin painting to exploring at the Children’s Museum in Houston and packing boxes for Operation Christmas Child.

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Fair warning: this post is oozing with images. After all, this was what our blog was about before cancer entered the picture and these images would have been spread out over several postings. Now, you get a binge viewing of happiness. Why, you might ask? Because Alexa Hope not only lives out her middle name (which I need a lot of these days), she exudes joy. You can’t help but smile when you see those bright eyes and quirky grins. She is one of my greatest reasons to give thanks!!

OKC MYRIAD GARDENS – PUMPKINVILLE
Alexa and I joined our friends Miss Brittany, Grace & Faith for a day of pumpkin fun!! It was frigid at first but then the sun broke through the clouds, and we had a glorious picnic.

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I love that Alexa wasn’t satisfied with a spare. She had to kick a strike.

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Alexa enjoyed checking out the homecoming artwork while Mommy & Daddy enjoyed the damp & chilly victory. I ended up getting sick after this game but I kept telling my sis as rain was drizzling our faces, “This will be a great memory!” Of course, we were winning, so it made the sogginess totally tolerable. Don’t we look like dorks in those parkas!? BOOMER SOONER!!

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TG FARMS PUMPKIN PATCHIt was the perfect fall day to enjoy pumpkin fun, corn mazes and animal petting with our friends from church.

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How eerie is this shot!? I mean this corn maze was serious and a bit spooky when we couldn’t find our way out.

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PUMPKIN PAINTING
What do you do with the spoils from a pumpkin patch? Why paint it, of course! Enjoy the video. This is our Alexa in full color. She sings anytime she is doing something, and yes, it is normally something totally made-up. We love music and singing (and dancing) at the Kennedy home.

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Her singing fills my heart with joy.

FALL FESTIVAL

Alexa wanted to be Doc McStuffins for Halloween this year. If you don’t know Doc, she’s an animated character on Disney Junior. Alexa enjoyed a beautiful evening of fun, games and candy at our church’s Fall Festival.

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This is Miss Carol. She adopted Alexa (and Mommy) over the summer when I was undergoing chemo. To say Alexa loves Miss Carol is an understatement!! Alexa still goes to her home once a week to play, play, play. Mommy loves Miss Carol too. We both think she’s pretty great!! I know she’s a gift.

CHILDREN’S MUSEUM OF HOUSTON
I decided on one of our last visits to MDA that I was going to devote one day in Houston to my family & fun, not doctors & appointments. We decided on the Children’s Museum and it didn’t disappoint. We had a blast and wished we could’ve stayed even longer.

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If you can’t see it, Alexa is creating a vortex by spinning the red wheel. She could make it tall and slender or short and squatty.

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OPERATION CHRISTMAS CHILD
This is Alexa’s fourth year of helping Mommy pack shoeboxes. It’s one of our little traditions. At the onset, Alexa had a difficult time wanting to share the items we’d purchased for the girls, but as we explained “the why” behind the shoeboxes something clicked in her mind and she joined in with a happy heart.

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Sunday, November 24, 2013

We’re home

We pulled into Norman this evening thankful to be home again – perhaps not so excited about the cold after being in Houston for a week, but thankful nonetheless.

As an update, I received all five of my stereotactic radiation treatments this week (one to T2 vertebrae, one to L2 vertebrae and three to my hip/pelvis area). On Wednesday, I received my bone strengthening shot. I will get this shot every four weeks indefinitely. I also had two treatments of acupuncture – the jury still isn’t in on this one. I will start back on my chemo pill (Votrient) tomorrow as well as my hand therapy three times a week.

I have been in a lot of pain this week, which has only intensified as the treatments continued. I don’t know why – perhaps a combo of the high doses of radiation I was receiving along with long days spent sitting/waiting and then lying incredibly still in a molded body bag for over an hour each day. It is discouraging to deal with constant pain in an area that disables you to do much of anything (lower back/hip/pelvis). We pray as the radiation kills the cancer, it will kill the pain too.

When we’d finally get home from the long days at MDA, all I wanted to do was take a shower, swallow a narcotic, have analgesic cream applied to the sore areas and lay down. For some reason, I also dealt with nausea. I told my family it felt like chemo all over again except the constant pain had moved from my arm to my lower torso. Needless to say, this is definitely not how I anticipated spending my 35th birthday, but it seemed appropriate to focus on killing the disease wreaking havoc on my body so I can look forward to living again.

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Thank you for all of the beautiful birthday wishes you sent my way on Thursday. I was overwhelmed by your love!! I appreciate every encouraging word, blessing and prayer offered for my healing and many more birthdays to come. It’s my prayer too. A big thank you to Patti, a Houstonian and dear friend of my mom’s (and now ours), who provided us with a delicious dinner and birthday cake to boot. It was fun to blow out candles with Alexa Hope.

As I’ve reflected on this birthday and the events surrounding it, I’ve thought a lot about John 12:23,

”Very truly I tell you, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds.” 

I feel like a great deal of 2013 has dealt with dying – how to kill the cancer in my body and the result for me if that doesn’t happen. In essence, I was made keenly aware of the fact I have an expiration date. (Everyone does, I know, it’s just that mine was brought to my attention and I couldn’t ignore it.) I have mentioned in a previous blog that with cancer comes grieving because you are constantly dealing with loss. Loss of the life you once knew, loss of health, loss of feeling good, loss of hair, loss of good cells, loss of the use of much of my right hand, loss of the little things you took for granted, loss of dreams, loss of the hopes for a large family, loss of your daily routine, loss . . .

And, although I am so grateful for the hope (and healing) these radiation treatments bring, my mind still wonders if/when the cancer will spread. Perhaps it is already somewhere else growing and then I’ll deal with another loss – and what if it can’t be treated? What if I never feel good again? What if this is what the rest of my life will look like? Will I ever have pain and not wonder if it’s cancer?

I know, not a very uplifting post, but it’s the truth. It’s what I think about every day, especially the days I am constantly hurting and the pain overrides the hope. But back to the verse in John 12, as I would hear the radiation beaming through my body into the bones being deteriorated by cancer, I would pray, “Lord, please allow this death to produce new life in me. Please don’t let this death be for nothing. Make me new from the inside out producing much fruit in this life.”

I desperately desire that the death of the cancer in my bones leads to not only stronger bones but also to a stronger body, a stronger mind, a stronger spirit – a healthy, healing body that will once again recognize cancer for what it is and destroy it without the aid of radiation beams or toxic drugs. I pray that in this battle to defeat a rare, unwelcome and nasty enemy, I will walk away a miraculous testimony of God’s healing hand with a much enlarged view of who He is and what He’s doing, even in the things that make absolutely no sense to me.

Whitney English posted this quote by Simon T. Bailey on her blog the day of my birthday, “You’ve got to let go of the old to make way for the new.”  I want to look at the events of last week and the irony that they happened on my birthday as I reminder that sometimes we have to die (to ourselves and to our dreams) to really live. And hey, that’s biblical, right!?

I’ve also been thinking quite a bit about this quotation from a book titled Fight On. (Thank you so much Brooke!) If you can’t read it, it says, ”The person you have been is not the person you will remain. Think of this as both a challenge and a gift.”

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I love the visual of the butterfly next to this quote. Just another reminder God does make all things new. And so, this is my desire as I continue walking down this road – to keep my eyes focused not on what I’m losing because of cancer but how the Lord is making me new and growing me in ways I never could have without this diagnosis. I certainly don’t see any of this as a gift right now – just a challenge – but I’m trusting the “gift” aspect will come in time. Of course, I am also praying He will physically make me healthy and new so I can live many more years with my precious family and friends. Now . . . that would be a gift!!

I pray He is doing the same with you as you walk beside me on this unexpected journey. And, when we begin to doubt, when the tears start to flow and sorrow comes, I pray we will be renewed with hope by the truth He does make all things new in light of what we might deem as loss. I pray we’ll embrace  this refinement and “newness” with open arms and see His goodness in very tangible ways in the days, weeks, months and years to come.

Tuesday, November 19, 2013

Two down, three to go

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It is Tuesday evening. I've taken a hot shower, and I'm in bed after another surprisingly full day at MDA. Along with two rounds of stereotactic radiation (one to my T2 and L2), I have fit in blood work, an appointment with Dr. Benjamin (which went very well), my first experience with acupuncture and started the application process for angel flight (in the hopes we can fly to Houston on our next visit in December).

So far the stereotactic radiation has gone well. I've managed to stay still despite different appendages falling asleep, and the physicists (who don't seem to think my jokes are as funny as I do) say everything looks good. I also have to let those of you who have asked know that I have been able to listen to music during these treatments. I get to pick my Pandora station. The first day, the first song was, "Deep Enough to Dream," by Chris Rice followed by the hymn  "Be Still My Soul," and then the praise song, "How Deep the Father's Love for Us." Quite apropos, if you ask me! As my mom said, the Lord never misses an opportunity to show Himself to us, no matter where we are.

My pain level, however, has been on an entirely different level than usual. I am praying, praying, praying the radiation will quiet the pain and muscle stiffness that has had me in tears several times the past two days. I am also praying it is the cancer they are killing that's the culprit and nothing new. I can't seem to find a position that is comfortable - be it standing, sitting or lying down. I feel so tight, and something as small as a cough can cause spasms. It's been a bit troublesome to say the least (which is why I'm going to bed so early thanks to analgesic cream & narcotics). I figure if I'm asleep, I don't notice the pain.

And that's what I've been doing in the downtime - sleeping. Seems like Alexa is catching the trend and sleeping too. Here we are napping together after my 1st round of radiation, courtesy of an Ativan pill (a form of Valium) which unfortunately took effect after the treatment. The Ativan was for me, of course, not Alexa. She was just conked out due to a full day of playing with her best buddy, Pop.

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PRAYER REQUESTS
- Tomorrow marks the beginning of three rounds of treatment to my lower left hip/pelvis. Dr. Brown has never performed this type of radiation to this area of the body due to the potential risks and side effects. I guess you could say I'm a part of new research at MDA. Pray for God's hand to guide every calculation, every angle and every high-powered beam of radiation for optimal results.
- Pray for a successful procedure leading to cancer's death.
- Pray for minimal to no side effects. Radiating this part of the  body poses more serious threats - bowel obstruction, chronic diarrhea, bone damage leading to fracture, an immobilized joint, infertility, etc . . . The main side effect I've had thus far has been nausea, so these are obviously more disconcerting to me.
- For the continual pain in hip/pelvis and especially lower back to cease and for us to figure out how to control it until then.
- My bone-strengthening shot has been approved (hooray!). I will be scheduled to get it sometime this week and every four weeks from here on out. I have no idea of side effects yet. Pray this won't interact with the radiation.
- I tried acupuncture today. Not for sure I feel better or worse but I am scheduled for another round Friday. We'll see.
- Please lift up new friends, Amanda & Greg. We made an instant connection putting a puzzle together in the radiation waiting room. We shared our hearts and hopes which seemed to line right up with our big God. While I was being treated, Greg came over and prayed with Chris and vice-versa. We hope to see them again the rest  of the week during treatment time. Ty Lord for continued divine encounters!

Monday, November 18, 2013

I'm approved!!

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen."  Ephesians 3:20-21

If you need a Monday pick-me-up, I've got a great one for you. At 8:30am, I received a call from MDA letting me know my insurance had approved all five stereotactic radiation treatments!! Tears of thanksgiving almost choked my voice as I tried to tell the MDA representative thank you for letting me know. The poor gal didn't know what to do with me, I told her the news had made my day and thank you for letting me know so quickly. After I hung up, my immediate response was to raise my hands in praise to the Father crying out, "Thank you Lord! Thank you Lord!" We asked you to pray the approval would come through by Monday and the Lord didn't disappoint.

Thank you mighty prayer warriors for asking and believing He would do this. Boy, did He!! This was a mountain indeed, and He moved it. We are singing His praise with great thanksgiving in our hearts. Now - on to the mountain of cancer in my body - please move it, Lord. Destroy it now and forevermore!! Show it it is no match for the God of "immeasurably abundant more than we could ever ask or imagine."

PRAYER REQUESTS
- Stereotactic radiation on my T2 vertebrae begins today at 1:30pm. (Each treatment will begin at this time throughout the week.) Please pray for wisdom and precision for Dr. Brown, the physicists and technicians involved. Pray the equipment would be complication-free.
- Please pray the Lord would still my heart, my body and my mind as I lay on the treatment table for approximately two hours. The pain in my lower back continues to intensify, so I pray I can keep my focus on Him and not the pain.
- Pray that each treatment would be highly effective in erradicating the cancer from my T2, L2 & hip/pelvis as well as my body forever.
- Pray for minimal to no side effects from this radiation.
- Pray for continued divine encounters at MDA. I've already had two very special conversations here today where I could share of my hope in Christ.

Saturday, November 16, 2013

An update

I apologize for not posting sooner. This is what I found out yesterday after speaking with a gal at MDA and two customer service reps at my insurance.

Apparently, MDA sent a pre-determination letter to my insurance a week ago Wednesday. Pre-determination means the insurance will decide if they will fully cover necessary expenses, cover a percentage of the expenses or cover nothing at all. MDA called my insurance yesterday when they had not received word of my approval over the past week and a half. My insurance said they never received any documentation from MDA . . . curious. So, MDA faxed the necessary documentation to my insurance (again) which they received and put in the system yesterday afternoon marked "urgent."

Normally, approval takes 10-12 business days but since my treatments have been marked as "urgent," my insurance is supposed to reach a decision within 72 business hours. I called the insurance and pled my case (in tears, no less) as well as the medical necessity and effectiveness of stereotactic radiation for my kind of cancer. However, the insurance reps said there was no way the medical board would come to a decision on Friday after having just received documentation that afternoon.

What does all of this mean? Because it is a pre-determination issue not an issue of pre-approval, both my insurance and MDA encouraged me to go ahead and start my treatments.

So, we are on the road to Dallas (and then on to Houston tomorrow) planning on doing the 1st two treatments (one on my T2 and one on my L2 vertebrae). At that point, we pray we have word from the insurance of my approval. (Actually, I am praying we find out Monday.) And don't worry, I will be following up Monday and continuing to make sure they know they have a very persistent, concerned customer on their hands. My radiation oncologist, Dr. Brown, is also more than willing to talk with the medical director at the insurance company to convey the medical necessity and urgency of these treatments.

We walked down this road in June with my first stereotactic radiation treatment, and after Dr. Brown's phone conversation with the insurance, it was covered in full. I realize, we are dealing with five very expensive radiation treatments, but I am hopeful God will give me favor as the insurance company reviews my case.

I keep going back to all of the miraculous answers to prayers God provided at MDA over two weeks ago. He allowed us to get in to see Dr. Brown without an appointment, approved all three infected areas for stereotactic radiation and even got my pre-imaging done two days later. It seems almost crazy that He would close the door now after opening so many.

However, I know quite well by now that I am not God and His ways are above mine. (Trust me, if I were in charge, we'd be decorating a Christmas tree instead of driving to Houston this weekend.) He has a reason and I hope it is bigger than seeing how high my blood pressure can rise.

Thank you a hundred-fold for standing in the gap as we wait to see what the Father does. I was reluctant to share anything about this debacle on the blog or Facebook, but I felt like my prayer warriors have been such an incredibly integral (and faithful) part of my journey, I just knew I needed you. I have received so much support and encouragement in the past 24 hours. I don't deserve your love or your continued prayers, but know, I am so grateful.

I have been thinking about a song I learned as a child and was recently brought to my attention by a dear friend who shared it in a card she sent. Thank you for the timely reminder, Janice. The lyrics to the song are below. It also makes me think about Proverbs 3:5-6. This is just another opportunity to trust Him with all my heart and lean not on my own understanding.

God Will Make a Way

God will make a way when there seems to be no way.
He works in ways we cannot see.
He will make a way for me.
He will be my guide, hold me closely to His side.
With love and strength for each new day, He will make a way.
God will make a way.

In closing, as I was reviewing my BSF notes this morning, I was challenged by an application question. "What do you fear?" The challenge was to ask God to protect you and to keep your focus on Jesus. Continuing with this challenge was the reminder when Christ is the center of your life, you will find Him close and powerful. And with this closeness comes the assurance He will work through your present crisis to build your faith in His authority and give you peace.

Lord, you know my fears - all of them. You know how they have only intensified with cancer. You know my heart and my desires. You know my weaknesses and You know how much I can handle on this journey. Help me keep You as my center, even when the crisis swirling around and within me seems unstoppable and ominous. Help me rest in Your peace & expectantly await your power, in your ways, in your time. In Your name and Yours alone I pray. Amen.

Friday, November 15, 2013

Urgent prayer request

I’m sending this out in the event a few of you will read this before this afternoon. I just received a call from MDA that my insurance has NOT approved my stereotactic radiation. This happened before but it took a couple of days to be resolved. We are leaving tomorrow to head to Dallas and then Houston. We don’t have a couple of days, and we know this has been the only effective treatment for killing my cancer thus far. Additionally, my pain continues to worsen. If it were up to me, these treatments would’ve been yesterday. Here we are in a holding pattern . . . again.

I am supposed to hear something from MDA this afternoon and I’ll keep you updated. We’ll see if God is willing to provide another miracle on this journey.

Tuesday, November 12, 2013

Stereotactic radiation – the sequel

“We wait in hope for the Lord; He is our help and our shield. In Him, our hearts rejoice, for we trust in His holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in You.”  Psalm 33:20-22

I think we’ve caught our breath since returning home in the wee hours Sunday morning.Okay, probably not but I know I need to update you on the latest in this ongoing cancer saga. As a dear friend told me recently, she looked forward to the day I was healed and my life was boring (in a good way). I am in total agreement. At the very least, let’s pray the “conflict” aspect of this chapter has reached its climax.

RECAP
To recap my time at MDA last week, I made two trips to Houston, had six doctor’s appointments, 2 MRIs, 1 CT Scan, 1 PETscan and underwent my stereotactic radiation pre-imaging. I spent over six hours lying as still as possible on not-so-comfortable tables (in some precarious positions, no doubt), and spent over 21 hours traveling in a car. What does that mean to you? Probably not much at all except you can understand why my lower back and hip/pelvis have been more aggravated than usual and why I just might be glowing when you see me. (There’s no question I will be glowing after next week.) At times when I feel incredibly weary (like today), I just look at my calendar and am reminded that metastatic cancer can be an all-consuming ordeal – it dictates my schedule, it never escapes my thoughts, it takes an obvious toll on my body, and it is refining my walk with the Lord.

THE RESULTS
Just to refresh everyone, the results from last week indicated my right forearm and C7 vertebrae were clear from cancer!! Praise the Lord!! However, the scans also revealed the cancer has spread to my T2 and L2 vertebrae as well as my left hip/pelvis. The next steps for my treatment include taking Votrient (a chemo pill) every day which also requires weekly monitoring of my blood work/blood pressure/liver enzymes. I will also be getting a monthly bone strengthening shot and undergoing stereotactic radiation next week to the cancerous areas (see schedule below). I enrolled in a molecular study we hope will result in more personalized and effective treatments, and I was released to start hand therapy, which commenced today,.

WHAT’S NEXT AT MDA?
My stereotactic radiation is scheduled for next week at MDA. We are so thankful for the quick turnaround as we hope it will decrease my pain, and of course, kill the cancer. Aside from a few other appointments I hope to schedule, this is what my radiation schedule looks like next week . . .

Monday, Nov 18  stereotactic radiation to T2 vertebrae
Tuesday Nov. 19  stereotactic radiation to L2 vertebrae
Wednesday, Nov. 20 - stereotactic radiation to hip/pelvis (one angle)
Thursday, Nov. 21 - stereotactic radiation to hip/pelvis (another angle)
*** I’ll celebrate my big 3-5 with a little “death to cancer” party.***
Friday, Nov. 22 – stereotactic radiation to hip/pelvis (another angle)

Each of these treatments takes approximately two hours (with ample pre-treatment simulation and around 45 minutes of radiation). Each treatment is scheduled to begin at 1:30pm. The type of radiation I’m receiving is incredibly targeted, and thus far, has been the most effective treatment in destroying this rare cancer.

It’s actually quite fascinating. Instead of going into great detail about the process, you can read more on my June 3rd, 10th, 11th posts. I won’t be wearing a mask this time; however, my body will be draped in an industrial-sized garbage bag (of which my head and arms stick out). It is suctioned to my body which is firmly molded into a customized bean bag-like form so I won’t move an inch during these highly targeted treatments. My neck and abs are marked up like an airport runway to help the physicists and doctors to precisely match the radiation beam with the cancer. (All of the markings took place during my pre-imaging last Friday.) The bag has also been marked (including my pelvis location) to doubly ensure complete accuracy. As I said in a previous radiation post, this procedure is performed by the most OCD (and brilliant) humans on earth. For this, my heart is spilling over with gratitude!!

IN THE MEANTIME
Although there are laundry piles and stacks of mail run amuck, our little family has enjoyed being at home for the week. I started hand therapy today and really enjoyed my therapist, Debbie. When I’m around, I’ll be seeing her three times a week. She spent a great deal of time with me wrapping her mind around all that has been done to my arm. She was impressed by how much functionality I had without an ulnar nerve – I credited God and Dr. Lin. Alexa enjoyed returning to gymnastics and we will both enjoy BSF tomorrow. We celebrated this evening with three-year-old birthday girl, Miss Liberty, and I have lofty aspirations of decorating the house for Christmas – at least getting a few things out before we head back to Houston. I just LOVE this season and want to soak-up every minute.

PRAYER REQUESTS
- This will be an ongoing request – For both the Votrient (chemo pill) and stereotactic radiation to be effective in totally stopping and eradicating ALL cancer from my body. No recurrence in forearm or C7 vertebrae. NO MORE CANCER!!
- I am only taking half of the recommended dose for Votrient, so we pray for minimal (or no) side effects so I can increase my dosage.
- I still haven’t heard if my bone-strengthening shot has been approved. It would be great to get that started.
- For pain relief in my lower back & hip/pelvis.
- For increased functionality of my hand through hand therapy.
- For rest, contentment and gratitude as we continue to adjust to the reality of our lives right now, especially when all I want is to be a healthy, normal wife & mommy.

As the passage in Psalm 33 states above, we are waiting with great expectation and hope in the Lord. He is the ultimate healer, and we pray this season of waiting is increasing (not diminishing) our trust in Him and what He can do. It’s a moment-by-moment exercise to take captive thoughts of fear, discouragement, what-ifs and woe-is-me. Our desire is to remain grounded in Truth (not statistics) and the Solid Rock who is our Father.

Thursday, November 7, 2013

He’s moving!!

I've been sitting for nearly an hour making notes, reading scripture and praying about how to compose this post. Ya' know when your heart is so full it is difficult to put into words what is happening inside? Well, that is how I feel today. To say God moved some mountains yesterday feels like a gross understatement. To know thousands were interceding on our behalf, expectantly waiting for God to move, and for me to be a participant in His mighty answers - it is almost too much for me to take in. So, I will somehow do my best to clearly communicate what happened yesterday (and today) and how we can move forward in prayer and praise . . . all pointing to our Father, the giver of good gifts, even in the unlikeliest of places.

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To recap, Monday at MDA was a marathon day filled with both good news and bad which provided us with more direction for treatment. On Tuesday, I was adamant cancer would NOT dictate my schedule, so Daddy, Mommy & Alexa Hope spent the day at the Children's Museum of Houston (one of the top in the nation by the way) and I believe I only had to take one call from MDA. (More pics to come on this super fun adventure. I WILL have a post dedicated to Alexa instead of cancer). However, the biggest surprise Tuesday came that evening when my dear, dear friend, Shannon, showed up out of the blue. I just couldn't believe my eyes. She was there to offer her prayers, her support and her smile in-person. It was so incredibly special and a moment I will never forget. Ty sweet friend for the sacrifice you made to spend the last two days with me! From photographing us in Galveston to shaving my head, you have been an integral (and hope-filled) part of my journey. It seemed only fitting you would be a first-hand witness to God's goodness on Wednesday. After all, you made the "God is good" watercolor, right!?

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And so, Wednesday arrived. It wasn't supposed to be a big day. The only appointments on the docket were Dr. Sharaf (my plastic surgeon) and a meeting with Nikki, a research nurse for Dr. Benjamin. Although we had asked everyone to pray for an appointment with my radiation oncologist, Dr. Brown, I had seen on my online portal that my appointment with him was next Thursday, Nov. 14. Here's a rundown to the beautiful twists and turns on this day. I know it's long, but if you've been praying, it's worth reading.

DR. SHARAF (plastic surgeon)

This appointment was very brief. Sharaf was very pleased with the healing of my forearm incision and was in agreement with Dr. Lin that I could begin hand therapy. Sharaf didn't see any need for continued follow-up unless I had issues. He, too, concurred it was time to move forward with my treatment and start the chemo pill, Votrient.

NIKKI (research nurse for Dr. Benjamin)

Following my appt with Sharaf, we met with Nikki, a very sweet nurse, who educated us on a new molecular study MDA is providing in which I'm participating. I am really excited about the potential this could offer my future treatment!! I am one of 3,000 patients currently enrolled (200 of which are sarcoma patients). They will eventually have 5,000 total patients in this study. All I had to do was sign a few consent forms (and I do that often these days) as well as give some blood (ironically, I do that often too). In turn, this is what they will do . . .

-- In the next four weeks, they will investigate my cellular make-up (particularly in my soft tissue where the cancer originated) and try to better understand what mutated in my cells to form Epithelioid Sarcoma.

-- In the next eight weeks, they will study my genetic markers to see if anything in my genetic make-up lends itself to ES, and if there is a possible way to target & turn off those genes to prevent the further spread of ES.

For me, this was huge as it served as a confirmation to continue treatment at MDA. One of the alternative medical therapies which really interested us, offered this exact type of research to provide the patient with a more personalized/effective treatment. Now, I have the privilege to reap this benefit at MDA with insurance coverage to boot! The nurse also confirmed I had one of the best docs at MDA (Dr. Benjamin). She said he had the most experience with sarcoma, was the most thorough and was simply brilliant (she didn't mention bedside manner), but we were all grateful to hear those words. She also confirmed Votrient, the recommended chemo pill, was a great next step toward ridding my body of this wretched cancer.

WHERE IT GETS GOOD :)

So, the day was off to an encouraging start. We already had some pretty special answers to prayers. Then, we talked through any other items we wanted to address at MDA before heading home. I decided to go back to the Sarcoma dept to clarify a few questions I had. I also tried to call Dr. Brown's nurse and see, if by any chance, we could see him this Thursday instead of next Thursday. When my call went straight to voicemail, I figured that was God's way of saying, "Be still and rest in next week's scheduled appt." However, what happened next was a beautiful illustration of what we studied in Matthew 7 this week in BSF.

In Matthew 7:7-11, Jesus teaches the principle of "Ask, Seek & Knock" or praying with dependence, perseverance, boldness & confidence. Our lesson encouraged us to "Ask" (to depend completely on the Lord), "Seek" (a determination to look for God to answer) and "Knock" (to persist in prayer to see and know God).

I had already "asked" by calling Dr. Brown's office to see if we could get in. I only got a voice message and knew Dr. Brown's nurse, Kimberly, doesn't return calls until the end of the day. So, we decided to "seek" Kimberly, out. We went to the brain/spine department where Brown clinics two days a week. We asked the receptionist to see Kimberly and she said Kimberly was in the radiation dept on the other side of the building. And so, we "sought" Kimberly out there as well. When we arrived, the receptionist told us Kimberly was on another floor in Waiting Room E, so we "sought" her out once again.

When we arrived in the waiting room, we didn't know what to do. There wasn't a check-in station - just a waiting room and a door. We saw nurses/patients coming in and out of that door, so Kimberly had to be in there. I didn't want to impose. I didn't want to overstep my "patient" bounds, but I decided to "knock" on that door. A gal answered. I asked for Kimberly and she appeared almost immediately. She apologized saying she was really busy but asked if we could wait a couple of minutes. We agreed wholeheartedly. A few minutes later, Kimberly came out, and I explained my dilemma asking if we could see Dr. Brown this Thursday instead of next. She told us he was leaving town on Thursday and would be gone through the following Wednesday. My heart sunk but I, once again, felt it was confirmation to be settled in my original appt. Then, Kimberly asked what we were doing today . . . we perked up and said "nothing." She asked us to hold on and she'd see if she could squeeze us in. About 20 minutes later, we were sitting in an examination room preparing to see Dr. Brown!! To add to this, Dr. Brown gave us about an hour and a half of his time. It was incredible to see "ask," "seek," and "knock" in a literal sense, absolutely incredible.

Long story longer, Brown came in (after reviewing my hip/pelvis MRI and PET scan) and told us he saw cancer in my T2 (a new spot by the way) & L2 vertebrae and he could address that with the same stereotactic radiation he did in my C7 (which is doing very well thus far). However, he would not be able to do stereotactic radiation on my hip/pelvis area as the cancer was so close to my joint. He said he's never done stereotactic so close to a very valuable joint and he has done more radiation than any other doc in that dept. He said it posed risks like creating scar tissue that might lock-up my joint and disable me to move my leg. Of course, I was disappointed as I knew Epithelioid Sarcoma was pretty resistant to general radiation, plus it would require 10-20 treatments, more side effects, and a higher probability of recurrence. Not being able to move my leg or having cancer spread and potentially face a hip replacement?  Hmmmm - they are both such attractive options, aren't they!?

After asking several more questions about general radiation, Dr. Brown stood-up and said, "Let me check your scans one more time." He returned 5-6 minutes later, and said (with great confidence, I might add), "Let's do it!" I clarified, "You mean stereotactic radiation on my pelvis?" He said, "Yes. I believe I can attack it from three angles." I was like, really!? I was also ecstatic - so much so, I gave him a high-five. I reiterated how much I trusted him and I was so thankful he was my doc.

I think we were all beaming in that examination room. I even saw a few tears well up in Shannon's eyes as she looked at Dr. Brown and said, "You'll have over 5,000 people praying for you when you take care of Kels." And we all know, he already had over 5,000 people lifting him up that very day in that very moment. Beautiful, my friends, it was just a beautiful, exhilarating moment. I mean, we totally brushed over the fact there was another place on my spine with cancer because we were so thrilled in how God had moved that day. When you prayed for God to show me glimpses of His goodness, I definitely didn't expect this!

WHAT'S NEXT?

As I was composing this missive, I received a call from MDA today. They want to do my pre-treatment imaging & simulation tomorrow at 9am followed by an MRI of my T & L spine!! This is huge as it will speed up the process of my stereotactic radiation, kill the cancer and (hopefully) remove my back/hip pain. It's a good thing Alexa and I stopped in Dallas instead of driving all the way home with Chris.

Following simulation, it takes 7-10 days for the radiation team to prepare everything. Once everything is prepped, I will be scheduled for five consecutive days of highly targeted radiation (one day for T2, one day for L2, and three days for hip/pelvis). If you want to know more about stereotactic radiation, please read the June 3 post.

PRAISES

- A surprise encourager to brighten my time at MDA. Love you - Shannon!!
- Confirmation I am where I'm supposed to be, with the docs I need to see, getting the treatments I need for now.
- New possibilities with molecular testing, holistic options and the ability to have stereotactic radiation to all three infected areas.
- Getting to see Dr. Brown a week early with pre-treatment simulation scheduled for tomorrow.
- Simply experiencing a "brighter" day where God's hand was so evident. Seeing prayers being answered right in front of us and being filled with thanksgiving.

PRAYER REQUESTS

- Continued pain relief in hip/pelvis and lower back, especially on the drive down & back to Houston. For the cancer to stay put until it can be radiated.
- Accurate pre-treatment imaging for upcoming radiation.
- For the antibiotics to be effective in removing the infection from my lungs. It's still there.
- For my bone-strengthening shot to be approved, so I can start it ASAP.
- I have started taking the chemo pill, Votrient. Ultimately, we pray this would be effective in preventing the spread of this disease and there would be minimal side effects (the most common are fatigue, liver damage, high blood pressure, diarrhea, headache and loss of pigment to hair).
- God-sized healing. NO MORE RECURRENCE!! NO MORE CANCER!!  Right now, it is running loose in my body and we are only putting out inevitable fires.

"The measure of our love for others can largely be determined by the frequency and earnestness of our prayers for them."  Arthur Pink

Needless to say, my family feels deeply loved!! I have heard from more than one person that he/she has never seen a family more prayed over than us. We don't deserve this love but we are so grateful. Thank you! Thank you for your persistence in praying for us and for every detail on this journey. Most of all, thank you for believing our Father hears us and trusting Him for the answers.

Monday, November 4, 2013

MDA Marathon

To give you a feeling for the eventfulness of the day, we left the house at 6:30 this morning and got back at 7:00 (and we were not spending the whole time in traffic). Here's a rundown of our day.

CT SCAN
Kelsey started off with a CT scan and was actually finished with the scan before she was even scheduled to start it. We found out there was nothing remarkable about the CT scan. There is some fluid in her lungs which appears to be from an infection (Kelsey has had a cough for a little over a week). It was recommended to continue follow-up on her lungs as this is a common place for Epithelioid Sarcoma to occur. In the meantime, Kels was given an antibiotic to hopefully remove the perceived infection. We then had a bit of down time before we headed off to meet with a nurse and doctor in Integrative Medicine.

INTEGRATIVE MEDICINE
Our appointment there was good - it was nice to hear a more holistic approach to fighting cancer. We spent some time talking with Dr. Lee's nurse. She had many good ideas about nutrition, sharing some of the ways she seeks to get vitamins through food and minimize sugar in her diet. In speaking with Dr. Lee, he had some concerns about some of the supplements we had been taking, saying he has a conservative approach (basically meaning that there has to be peer-reviewed evidence of its benefit). He thought it would be worthwhile (after hearing the results of the PET scan) to get a physical therapist familiar in treating cancer patients to help with some stretches and exercises to strengthen Kelsey's back and core. He also recommended she do acupuncture to relieve some of the pain in her back and hip. He said that even if there were cancer in those areas, there is no interference with treatment from acupuncture. He also recommended protein powder to get Kelsey's weight up a bit, and he ordered a more thorough blood work-up to better understand her deficiencies and how to supplement.

PET SCAN
We then raced off to her PET scan (it's in another building) where Kels was injected with radioactive dye and left alone for an hour. During the scan, she was in quite a bit of pain while lying on her back for the scan which took about 50 minutes. In meeting with Dr. Benjamin, we learned the MRI results of her hip were confirmed by the PET scan - cancer in her left hip (near where her femur meets the hip) and pelvis. The cancer seems to be creating a fracture in that area. In addition, the concern we have had since the initial PET, where there was an area in her lower back that lit up, was confirmed to be cancer in her L2 vertebrae.

DR. BENJAMIN & DR. LIN
We then hurried back to the other building to her appointments with Dr. Benjamin and Dr. Lin. We ended up meeting with Dr. Lin first - he was pleased with her progress and recommended she continue to do passive flexing and stretching of her fingers. He also wrote up a prescription for her to start seeing an occupational therapist for her hand. Another praise, no cancer in her forearm.

Our meeting with Dr. Benjamin, although it did bring some unwelcome news, was positive. Unfortunately, the cancer has spread to her L2 vertebrae as well as her hip and pelvis. His recommendation is to meet with Dr. Brown (who did the stereotactic spine radiation for Kelsey's C7 vertebrae) to see how the cancer in the bone may be addressed, to start taking Votrient (a drug which reduces blood flow to fast growing cells - seeking to kill them off), and to get a monthly shot to help strengthen her bones.

Definitely a lot of information! We continue to covet your prayers and thank those of you who petitioned for us throughout the day. Although we did not see miraculous healing, we saw God's hand at work. A more compassionate Dr. Benjamin. Every appointment was on time with very sweet & upbeat folks caring for Kels. No super surprising news (we had sort of anticipated cancer in Kels' spine). We have some direction for treatment & were encouraged when we were able to speak to someone with a more holistic approach. Kels wasn't overwhelmed (although saddened) with the news & felt peace most of the day.

PRAYER REQUESTS
- Please pray for continued direction. Traditional medicine? Alternative treatment? Holistic approach? Some combination of all of these things?

- Pray the antibiotic works to remove the mysterious spots on Kels' lungs.

- Pray for effective treatment options for Kelsey's hip & ability to meet with Dr. Brown this week. Benjamin seemed reluctant to believe stereotactic radiation would work on her hip. Broad spectrum radiation is not proven to be effective for Kels' cancer but Dr. B thought even that might be helpful. We are praying for stereotactic which is 90% effective for radiation resistant tumors. By the way, Kels' C7 continues to look good - praise The Lord!

- No more recurrence in Kels' body - no more in her arm, her C7 and in any other bone or soft tissue.

- If we chose Votrient (the pill,) that it would work in preventing spread of any tumor. Lord, please stop this madness!

- For pain relief in Kels' back, left hip & left side. She said she feels like an old woman & struggles to move much at all. This is discouraging as she has felt fairly good and the pain in her forearm has been removed. She really wants to exercise again.

- Continued prayers for upcoming appointments at MDA this week.

** Kels here. Again, I was overwhelmed by your incredible support via texts, emails and FB messages. Please don't be offended if I haven't replied to you. There was so much love sent my way today! Above all, thank you for your continued prayer support. I definitely needed it and felt it.

It is said, Sarcoma Is the "orphan" of all cancers as it comprises 1% of all cancers. It is ridiculously under-funded, and my diagnosis, Epithelioid Sarcoma, occurs in one of every 10 million cancer diagnoses. It is INCREDIBLY, INCREDIBLY rare!! I think my likelihood of winning the lottery is higher. That's discouraging to my heart and my future (the rare cancer not the lottery comment). That being said, there is some hope for treatment for this metastatic disease but nothing targeted or proven to be statistically effective. No clinical trials on the horizon either. Therefore, we need your prayers. We need a great big God to do the healing and get the glory. We're thankful we have both.

Sunday, November 3, 2013

Thank you

Words are inadequate to express the gratitude we have welling up in our hearts for the love and concern you’ve shown us over the past several days (and, let’s be honest, the past several months). I feel as if a tsunami of prayers has covered us as we process the latest news on this journey and prepare for more tomorrow. How humbling it is to have friends, family and total strangers encouraging us and committing to be a part of the vast army of prayer warriors we have marching alongside us.

For example, a dear friend told me her friend wanted me to know her four young boys have prayed for me every single night since April and they aren’t going to stop until I’m healed. I was moved to tears by their faithfulness and belief in God’s ability to heal me. This isn’t the first time I’ve been humbled and moved by the love I have and am receiving (all undeserved, of course). Even when God’s hand can seem quite distant, I am thankful He shows me He does care through the love of His people (that’s you)!! We are – beyond a shadow of a doubt – overwhelmed with gratitude, deeply overwhelmed.

I’ll admit, I’m very strong-willed, so I’ve stiff-armed God and His Word to a great degree over the past couple of days. I know it’s an ignorant thing to do as it only hurts me, but somehow, I rationalize if I can let Him “feel” how hurt I am, it will make me feel better. Um, it doesn’t really work, but I know He can handle my Heisman trophy pose and my heart as He works to refine me into His image (although I’m still quite resistant to how He’s doing it). His love for me isn’t threatened by my stubborn (and grieving heart).

I know He is hurting too – I just can’t wrap my mind around His bigger plan and why He just isn’t stepping in to save the day. Yes, I realize I’ll never wrap my mind around His bigger plan anyway. A pastor I enjoy listening to says God’s will is like sitting on the shore and looking out at the ocean. All we see is a small bit of the ocean touching the horizon, but in fact, the ocean stretches far, far beyond what we can really see. The ocean is vast and there is so much more there we just can’t see. And that’s how God’s will works, we have to trust there is far more going on than what we can perceive. And, I do believe this is about far more than cancer. I believe there is an unreal spiritual battle going on that we can’t see. Although I know not the depth and breadth, I can sense it. I’ve said it before and I’ll continue saying it. '”I have no idea what He’s doing, why He’s doing it and what I have yet to learn from this; but, I pray in spite of those very legitimate questions, I will be able to trust Him.” Trust Him for what we find out tomorrow. Trust Him for the treatment plan. Trust Him in the what ifs and trust Him for this very moment.

With all of that said, I have most definitely “borrowed your belief” the last couple of days and will probably continue to do so in the days to come. So, thank you for joining us on your knees as we see what God has in store for me and my family.

Thanks to your many prayers, this morning at MDA went surprisingly well. When I woke up, not only did I have my normal lower back pain, but I also had sharp pain in my left shoulder all the way down my side. I immediately felt defeated and then I started coughing – more defeat. How in the world was I going to lay still on the narrow MRI bed wincing in pain and trying not to cough (mind you, you cannot move during an MRI or they have to redo the images)? Thanks to your prayers, two Aleve and a cough drop, it was the fastest MRI I’ve ever experienced. The tech was very friendly and kind – super bonus! We finished up quickly at MDA and I was able to come home and take a relatively pain-free two hour nap. Also, my mind has been relatively free from MDA thoughts or what will happen tomorrow. Thank you!

PRAYER REQUESTS

A friend sent this song to me last night. I smiled when I saw the link as I love this song and believe it expresses everything I have been feeling. I have listened to it on repeat for several months now. You should hear Alexa belt out the chorus with me. There is a lyric that echoes the deep longing in my heart.

I’m trying to hear that still small voice.
I’m trying to hear above the noise
.

That is my greatest prayer request. That I would be able to separate God’s still, small voice from “the noise” I hear tomorrow (and in my head so often). And trust me, there is a lot of noise at MDA. The noise can be so deafening, so discouraging, so dark. It is the noise I dread most tomorrow, especially from Dr. Benjamin. Please pray against this and that I would sense in very real, tangible ways the presence of God and His goodness in the darkness.

Plumb – Need You Now

-- For God’ grace to cover every moment of tomorrow. I have never dreaded a day as much as I have this one in a while. I truly dread everything about it.
-- Pray all of the scans would go well and would provide clear images.
-- Pray for Dr. B’s wisdom in deciphering the images and providing a clear plan of action. Pray for our interactions with him. That he might be compassionate and that I could communicate my heart clearly as well.
-- I have to go without food until my PET scan is over, so pray I would be content and have energy until mid-afternoon. Please pray I wouldn’t struggle with pain or coughing as they discourage meds during this time. My left side is still hurting and I don’t know why.
-- Pray for our hearts as we digest more news. I am still praying it will be good. Pray for a deep, abiding trust in the Father, and clear direction from Him (not necessarily MDA) in what to do next.
-- Pray we would be light in the darkness, especially when I don’t feel very “bright.” We want the Enemy to be defeated in this battle.
-- For complete, God-sized, God glorifying healing of my body.