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Wednesday, September 3, 2014

Hooray for eating!

After over a month of no solid food for Alexa, yesterday was a big day. In the afternoon, we went to visit with Alexa’s pediatrician, Dr. Kuhls. Alexa was very concerned about “the wood”, since she had a strep test at her last two visits, but I told her she wouldn’t need a strep test this time. We talked a bit more about it and I told her when I was growing up, I always hated the swab more than the wooden tongue depressor. We found out Alexa had lost another pound since her prior visit, bringing her up to losing about three and a half pounds since July 30 (the morning when she ate her last bit of food). It was a good appointment, Dr. Kuhls checked her out (after assuring her there would be no wood or giant Q-tip), looking at her throat and teeth, checking her breathing, listening to her heart and checking her tummy, then telling her there was nothing wrong with her which would keep her from eating. He told her that he wanted her to eat three times a day, as much as she wanted of whatever she wanted. He told her if she did not start eating there would be tests and procedures done which would make the wood and giant Q-tip seem easy. She grudgingly said “okay” when asked if she would do what he had asked her to do. I was very encouraged when she agreed to eat a sucker (again, no solid food of ANY kind in her mouth for over a month) and was almost finished with it by the time we were home. We talked about where she would like to eat and she told me she wanted to go to Fuzzy’s Taco Shop to have tortillas dipped in queso.

By the time I got home from work, she was more concerned about eating, but we went to wash the car and went to Fuzzy’s. She dipped her finger in the cheese several times and licked it off saying it was quite yummy. However, the drama began when I asked her to dip a (very small) piece of tortilla in the queso and eat that. I dipped a bite for her, and tried to coax her to eat it. At first, I reiterated what Dr. Kuhls had said, she needed to eat three times a day and there was nothing wrong which would keep her from eating. We ran the whole gamut of excuses, from being worried about whether she could still bite food, to being worried about how much she would have to eat, to being tired, to wanting me to give her a hug, to wanting her cousin Rylen there with her.

So (not proud, just truthful), being out of options on the reasoning side and wondering if people thought I was abusing my daughter right there in the restaurant (she was alternating between whimpering, whining and sobbing), I resorted to bribery. I told her that if she wanted to see her cousins, she would need to eat fairly quickly so that we go see them before it got late (since she had an early morning for Pre-K this morning). That fell flat, the 15 minute timeframe I had given expired and the whining continued (she had put the tortilla inside her mouth several times during that timeframe, but never actually let go of it or actually touched it to her tongue).

Once bribery failed (and my patience was beginning to fail), it was time to resort to threats. I picked up my phone and told her I was calling Dr. Kuhls like he had told me to if she wasn’t going to eat. That got a response, “No, Dad, no!” She proceeded to do the in and out trick until I picked my phone up again and then she actually put it in her mouth. She spit the first bite out after she had chewed a bit, but immediately proceeded to get another bite, dip it in cheese and eat it (lots of chewing for a tortilla, but it went down and stayed down). I then made 10 very small pieces for her and said she could eat those and see how she did. When she finished, I asked if she was done and she said, “Could you tear up four more bites for me.” I did, she ate those and then asked for four more. We repeated the process, then she picked up the tortilla and tore off her own bites. Over the next 30 minutes, she managed to eat two whole tortillas and finish about two thirds of the cup of queso. Then, she decided that she wanted some chocolate ice cream to celebrate, so it was off to Braum’s. Here is photo and video evidence:

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Saying “tortilla” after she had torn up some tortilla for herself and was continuing to eat.

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In action after about a tortilla and a half.

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Celebrating at Braum’s.

And, a video. Sadly, I stopped the first video I took inadvertently, she said some things which were even more priceless, so I tried not to have her repeat everything she had just said (worried she would question my sanity). However, she does give a big shout-out to all of her prayer warriors. I likewise am INCREDIBLY grateful.


Today, she ate a bran muffin, a sausage ball and a bite of banana (she was concerned because a piece I cut off of the banana had a little brown spot on it) for breakfast. I also think she was saving room for the snack at school (she had made strawberry and blueberry muffins yesterday to take for the snack with her nanny, Jenny, and Kelsey’s dear friend Shannon). She managed to eat four muffins for snack and then three more right after school. She is still a bit concerned about anything which she considers “hard” (no chips yesterday for instance), but we are definitely making steps in the right direction. Certainly an incredible relief for me that she has moved past that mental block!

Prayer requests:

-- Pray Alexa will continue to eat and it will become a part of her normal routine again.

-- Continue to pray for time for both of us to process. Our days seem to be filled with activity, finding time to slow down is a challenge.

-- Pray for God’s glory. I have had some wonderful conversations about what God has been teaching me (hopefully sometime in the not-so-distant future I can share some of those lessons here) and continue to pray that each day, God can use my grief and pain for His purposes in my life and the lives of others.

-- We will be starting a grief support group this coming Monday, September 8 (Alexa will be with other four year olds who have lost someone in their family). Please pray it will be beneficial for both of us and we can be used by God to minister to others there as well.

Thanks again for your prayers. Thank you for the encouraging comments, the thoughtful notes, the messages on Facebook, the text messages, meals, and multitude of offers to help in any way. I am simultaneously afflicted and blessed. I think I understand Job’s comment in the midst of his suffering a bit better. Nothing changed, but he was able to say,

“I know that you can do all things;
     no purpose of yours can be thwarted.

You asked, ‘Who is this that obscures my plans without knowledge?’
     Surely I spoke of things I did not understand,
     things too wonderful for me to know.

You said, ‘Listen now, and I will speak;
     I will question you,
     and you shall answer me.’

My ears had heard of you
     but now my eyes have seen you.”
-- Job 42:2-5

Thank you for being part of allowing me to see God in the midst of grief!

Wednesday, August 27, 2014

Grieving, Groping and God

Well, in case you were wondering, we have not completely fallen off the map. There have been many nights I have wanted to post, but a pile of tasks, a daughter who is reluctant to go to sleep, or exhaustion have kept me from posting. The other part of that is that there are so many thoughts swirling around in my head, that I haven’t even known what to write. I suppose I empathize with Kelsey a bit more as she would tell me about all of the posts which were halfway written in her head (side note, she has snippets of those posts saved in her notes on her phone – I’ll have to do my best to piece some of them together someday – I am sure you are not surprised, but she has some neat thoughts written down there).

There is no denying that on July 5, our lives were unalterably changed. There is a meaningful illustration in one of the books which has been very helpful to me through this time, A Grace Disguised, by Jerry Sittser. He speaks there of the fact that when we experience loss, the future which we had imagined is suddenly, irrevocably torn away. Our future then looks dark. Of course, we never know what the future holds, but we do a great job of pretending that we do. Loss is a potent reminder of the fact that we do not know what the future holds. I am sure in coming days I will share more from this book and from other books and sermons which have provided solace – it is so encouraging to hear from people who have walked through grief. Someone who can tell you that the crazy emotions and the crazy roller coaster ride which each day brings does not mean that you are losing your mind. Someone who can tell you that the grief never goes away, but if you are able to face it with God’s help, it becomes a part of your soul, not defining you, but becoming a part of who you are. Yet, while the grief never goes away, God can allow you to have wonderful moments of happiness and joy.

There have been a lot of firsts over the past almost two months. The first morning after Kelsey died, waking up and hoping that maybe it was all a dream. The first time coming back to our house, looking around at the touches everywhere which remind me of Kelsey (not to mention pictures of her in almost every room of the house). The first time back to work, first family trip without Kelsey, first day of Pre-K for Alexa and on and on the list goes. There are so many reminders of all of the ways that she kept everything running so smoothly around the house – from packing for Alexa when we went on our trips, to picking out cute outfits for Alexa, to fixing her hair. All of those things, when I am marginally successful at them remind me that she is not here.

And yet, in all of this, God is sovereign. None of this is outside of His plan and by His grace, we are sustained day by day. In that respect, I am no different than anyone else who may be reading these words. This is not meant to be a pity party, but more of a real reflection of some of the emotions and thoughts that run through my head on a moment by moment basis. You all have been so faithful to pray for our family and I want to provide you with some specifics as you are taking us before God’s throne, because those prayers have not and will not be wasted!

Many of you know that four weeks ago, Wednesday the 30th of July, was the day that Alexa took her last bites of solid food (in the form of two bites of a mini chocolate chip muffin). Since that day, she has not touched anything solid: her diet now consists of apple juice, apple berry juice, V8 Fusion (sneaking that vegetable juice in on her), and chocolate milk. The shenanigans we have tried to get her to eat are about endless – preparing some of her favorite foods with her, having other people try the same, offering donuts, ice cream, smoothies, trying to mix Pedialyte in with her chocolate milk, but she is resolved not to eat anything. She has had a weird off again, on again mild fever, but her throat certainly doesn’t look irritated like it did initially. She is still very concerned that if she eats something (even something soft like ice cream, pudding or applesauce) that it may still hurt. Like Kelsey, I have had to laugh at this: clearly walking through the journey of grief was not quite enough, I need a very strong-willed daughter thrown into the mix as well! We also had a fairly extended “poop-mageddon”, where Alexa decided she was on strike in that regard as well. Thankfully, we seem to be on the other side of that standoff!

She is trying to process her grief as well – I cannot even imagine what that is like for a four year-old who loved her mommy more than anyone else in this world. Seems like part of it is control, part of it is fear of pain, and who knows what else mixed in. We go to meet with a child psychologist tomorrow (I met with her today to share some of my observations) and are also hoping to be accepted into a grief support group in Oklahoma City. My prayer is that these will allow her avenues to express her grief (and even understand it) in ways that she is not able to now.
I do have a few photos to share. Alexa was not too thrilled to be going to Pre-K on Monday. I told her that she would have a great time and that I would be picking her up before she knew it. Here is one of the “first day of school” photos I took (they were all sad or grumpy):

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And then, here is once she made it to Pre-K. I dropped her off in the regular line, then told her I would come in to meet her other teachers and say goodbye. Here she is at that point in time:

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The skies were a bit brighter and she told me, “Dad, I am going to have a great time.” She did and day two (today) went even better. She was a bit hesitant as we were getting ready, but here she is on the ride to school (our dear friend Shannon Ho took her today):

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Alexa is totally thrilled to have a wonderful friend and playmate in her nanny, Jenny. She asked me this evening when she would get to see her again and I told her that she would be here when she got up in the morning tomorrow and she was quite excited. They have really hit it off.

So, each day brings new challenges and new glimpses of God’s mercy. At times it feels as though I will be overwhelmed by grief – I now realize heartache is not just an expression, it is a literal physical pain in your chest in the midst of moments of deep grief. At times, it feels as though I am groping in the dark, not knowing how to face the decisions which come along and missing my helpmate who was always a wonderful sounding board. But, God is faithful. He has sustained me and I trust He is not going to stop doing so.

Prayer requests:

-- My heart hurts for my sweet daughter, Alexa. How I wish I could take away the pain she is feeling and help her to process her grief. Please pray she will begin to eat soon – perhaps a combination of visiting with the child psychologist and going back to meet with her pediatrician will allow her to understand she is better and can slowly get back to eating solid foods again. Pray if there is some lingering bug of some sort that we would discover it quickly and be able to address the issue. Pray I can be a loving and supportive father to her during this time

-- Pray for time to process. Life continues, work presses, household tasks beckon, time with Alexa calls. Pray in the midst of the busyness for moments to seek to understand the depth of this loss, to understand this world is not my home and to learn to trust God more fully in these days of intense grief.

-- Pray for strength and endurance. Grief is tiring. There are so many other things going on as well. Late nights and early mornings taking care of tasks which used to be divided in two. All of the details to take care of after Kelsey’s death: insurance, finances, etc.

-- Pray for God’s glory. I don’t want to miss Him during this time and want to be used even now to encourage others and love them in their times of grief.

There is more, but I will share another time. This post has already become longer than I hoped for originally. Thank you (if you are reading this) for your strong resolve to read the whole thing!

Sunday, July 13, 2014

Kelsey's life celebration service

My apologies for the issues with the streaming video. There was an issue with copyrighted material in the slideshow before the service. Here is a link to the celebration service from July 11, 2014 at 1:30 pm: http://goo.gl/OekDT1. Here is a link the to the pre-service slideshow - some fun photos of Kelsey: http://goo.gl/NxMS6e.

Monday, July 7, 2014

Celebration of Kelsey's Life

The Celebration Service for Kelsey will be at 1:30 pm CDT on Friday, July 11 at Edmond First Baptist Church in Edmond, OK. Thank you so much for your continued prayers and the many ways you continue to show love to our family.

If you haven't seen Kelsey's obituary, here is a link: http://goo.gl/2H1Fao.

Also, I know that many of you have asked about ways to give in memory of Kelsey. Memorials to help with ongoing integrative cancer research may be given online at www.reo-foundation.org. If you would like to give toward Alexa's 529 Plan, you can do so here: http://goo.gl/EyRudr. Not sure if you need an invitation code, but if you do, you can use OKGtLHj.

Saturday, July 5, 2014

No more cancer!

Photo Jul 04, 11 12 29 AM
At 4:00 pm on Saturday, July 5, Kelsey Louise Scoggins Kennedy won the battle with cancer. She is now dancing in glory, where cancer is no longer a concern. No more C > c (Christ > cancer) in heaven, just C – who she will be eternally praising! We celebrate her life. The eight plus years I have had the pleasure of being her husband passed quickly. It is a crazy mixture of emotions. Sadness for those of us left behind, exhilaration that she has no more pain. She can now dance, run, and ride a bike. She will never have a concern of recurrence or spread of disease. She will be able to hold our two children who went before us that we never had a chance to hold. I can imagine the sweet reunion she had with her friend Melinda who proceeded her to heaven.

I will share one of the hymns that we sang which was very poignant to me (they all were) after Kelsey had gone to be with Jesus – Because He Lives:

God sent His son, they called Him, Jesus;
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He Lives!
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to vict'ry,
I'll see the lights of glory and I'll know He lives!
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

All wonderful verses, but two and three are especially touching to me – Alexa does face uncertain days, but she can face tomorrow because Jesus lives. Kelsey fought life’s final war with pain – and death did give way to victory for her.

Final thing to share, as we close out the first chapter of Kelsey’s life – a neat illustration which was written in a pamphlet about the final days of life:
“I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, ‘There, she is gone!’

‘Gone where?’

Gone from sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear the load of living freight to her destined port.

Her diminished size is in me, not in her. And just at the moment when someone at my side says: ‘There, she is gone!’ there are other eyes watching her coming, and other voices ready to take up the glad shout: ‘Here she comes!’

And that is dying.”

-- Henry Van Dyke
The only correction is that we know exactly Who the voice was who welcomed her into glory, the same one who said, “It is finished” as he gave up His life on the cross, the same one who said, “Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age.”

Please pray for our family. Pray for Alexa. Pray that we will continue to glorify God in a small percentage of the way that Kelsey did with her life. I love all of her warriors – some of you who I have never even met and may never meet this side of eternity. You sustained us, you encouraged us, you blessed us. Your stories of how Kelsey blessed each of you has been amazing over the past several days. Kelsey’s book is already written – we just have to put it all together!

Friday, July 4, 2014

The road home

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We are still at the hospital with Kelsey. She seems to be standing at the doorway of this life and the next. Seems strangely appropriate to be writing this post on Independence Day. I am not sure how soon it will be, but without a miracle, Kelsey will be declaring her independence, through the blood of Jesus Christ. Her independence of sin, sickness, sorrow and death. From the first biopsy results we learned this was a nasty cancer, now, Kelsey has the opportunity to be completely cancer free. No worries of recurrence, no lingering pain from nerve damage, no reduced functionality in her right arm, no pain in her hips from some crazy alignment issues (probably due to a combination of the stereotactic treatment as well as favoring her right leg when the tumor was growing there), no trouble breathing, no more fluid on her lungs, no more confusion about where she is or what day it is. And, oh, the rapture of being in the presence of Jesus and hearing “well done, my good and faithful servant.”

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Here is Kelsey with her armor on. Yesterday morning (July 3), she decided it was time to put her shirt on. As she was putting it on, she stated that anyone who wore the shirt would need to be ready to share about the love of Christ with others. Several nurses who have worked with us either have, or will soon have, their own shirt to wear. A lot has changed since that time. Yesterday she was still very coherent, continuing to encourage people who came to visit her and thanking her nurses. Yesterday evening, her speech began to slip a bit. I had the impossible task of talking with Alexa about the reality of the situation. Unless God does a miracle, the next time we go to our house, Mommy is not going to ever walk through the door again. No more cheerful Kelsey smile, no more new touches around the house, no more beautiful outfits picked out by mommy, no more fun adventures with mommy, the list continues. Telling your daughter who is four years old the one who is the dearest to her on earth is going to be with Jesus is heartbreaking. This world is not our home and I feel that more acutely than ever. I do not want pity, I do not want those knowing glances, I do not say this for any other reason than I continue to covet your prayers.

The battle is not over, but the end appears to be drawing nearer. After the most recent nurse shift change at 7:00 this morning (when she once again thanked her nurse for all her help), she has not really spoken or even attempted to speak. She has rarely opened her eyes and even when she does, I am not sure that she is seeing this world each time – in the times of clarity, it has been a privilege to read the encouraging testimonies of how Kelsey has touched so many lives on the Praying for Kelsey Facebook group. Whether God takes Kelsey home, or heals her, we will figure out a way to get all of the posts together. It will either be a start to the book, or perhaps the main content of her book should God choose to take her home. Another example of Kelsey still being Kelsey, last night she offered to pay our nurse to stay with her throughout the whole night. Kelsey loves Brenda – one of the many special nurses we have had during this stay at the hospital. We told her that Brenda’s other patients may not appreciate not having a nurse to help them out throughout the night. Now, we are listening to songs playing on Kelsey’s Pandora station – which she seeded with Chris Rice.

Prayer requests

-- Pray that Kelsey would have no fear, but would be filled with the knowledge of the deep love of her Savior, and that He will either heal her or call her home. Pray we will be able to manage her pain, so that she is not needlessly suffering.

-- Please pray for my sweet daughter, Alexa. Pray this will be a chapter in her book which will make her a strong follower of you. Please pray for protection against this being used by the evil one to keep Alexa from being everything she can be for the kingdom. Please pray that she will come to know Christ soon, perhaps even out of this painful time.

For those of you who may not be in the Praying for Kelsey Facebook group, but are following the blog, here is a slightly modified version of the prayer I posted there:

Now, Lord, if her work on earth is done, please take her quickly (but not before she has brought You the maximum amount of glory she can bring by being present here on earth). What a joy to know that she will be able to fully use her hand (I anticipate her enjoying shooting a perfected jump shot and throwing an even more perfect spiral than she threw before surgery), she will have no more pain or tears, she can dance with you in heaven, she can hold our two dear children who we never got to hold in this life, and will be able to speak with You and praise You clearly! If her work is not yet done, and You choose to let her tarry awhile longer in her hospital bed, fill her with a real sense of your presence and love and cast out any fears or doubts that may assail her. While the opportunity is there, I do continue to petition your throne for your total, complete earthly healing! Thank you for all of your saints who have come around us and thank you Jesus that you ARE so much greater and more powerful than cancer! Amen

Wednesday, July 2, 2014

God’s love for Kelsey

“Now a man was sick, Lazarus, from Bethany, the village of Mary and her sister Martha. Mary was the one who anointed the Lord with fragrant oil and wiped His feet with her hair, and it was her brother Lazarus who was sick. So the sisters sent a message to Him: ‘Lord, the one You love is sick.’” – John 11:1-3

I read a devotional a few days ago which brought me to tears – it was based on the previous passage of Scripture. The devotional went in depth into the nature of God’s love and how Mary and Martha did not appeal to Lazarus’ good deeds, the number of children he had (we don’t even know if he did have children), or the ways he would be able to bless others if he was healed, they appealed to Jesus’ love for Lazarus. The devotional is beautifully written (if you’d like to read it, here is the link: http://goo.gl/EAbclA), but I walked away realizing that I can make this same appeal to God about Kelsey, “Lord, the one You love is sick.” And oh, how great his love for Kelsey is. Because of God’s love, He sent His Son Jesus to die on the cross to pay for the wrong things that Kelsey has done in life and provide for her to come to salvation. Because of God’s love, He is preparing a place in heaven for her. Because of His love, He enabled her to choose to make Jesus the Lord of her life, acknowledging that she did not measure up to God’s standard and needed to rely on the sacrifice that Jesus made on the cross. Because of God’s love, she, like Jesus, will be raised to life in heaven. It is an extravagant love, which means before time began, God had a plan about how He would draw Kelsey to Himself.

I love Kelsey, Alexa loves her mommy, Kelsey’s family loves her, all of her warriors love her, but all of our love for her combined does not add up to God’s love for her. Can I trust His love for her? As I continually plead with God for her healing, I know that every action God takes toward her is motivated out of His love. Thank you all for joining in petitioning God, because, “the one He loves is sick.” Can I trust His love for her?

If you’d like to get a warrior T-shirt, we are planning to place another order tomorrow morning. You can visit http://thekennedycrew.com/t-shirts/ if you’d like to get one.

Photo Jul 01, 5 12 51 PM

Photo Jul 01, 5 13 05 PM

Two very special girls, who are incredibly dear to my heart! Check out the colorful and special necklace that Rylen (Alexa’s cousin) and Alexa made for Kelsey.

By way of a brief update, the meeting with Dr. Keefer was a challenging one for Kelsey to hear on Monday. He shared with her that the nutrition IV would not be helpful for her. He said if he had even a glimmer of hope that it would be beneficial for her, that he would start it for her immediately. He has seen patients at a similar stage who have requested the IV nutrition and it really made no difference at all (other than it adds to the already constant monitoring). It is always hard to hear that in the world’s eyes there is no hope. Since then, Kelsey has managed to eat about half of a Krispy Kreme donut, 1/3 of a McDonald’s cheeseburger, and some cheese sticks from Stars & Stripes.

We continue to covet your prayers:

-- Pray for good rest for Kelsey, for minimal pain, for wonderful times of alertness, for strength, for the ability to enjoy some more tasty foods if they sound good.

-- Pray for continued special times with family and friends. Thanks to all who have come by.

-- Pray we can continue to bring God glory. We had a hymn singing session with several gals from our church in Norman this evening. The nurse came in and said that they had received several calls from other people on the floor who said it was so encouraging to hear the singing. Whether Kelsey’s days are many (as we pray), or few, that each moment she lives would bring Him glory.

-- Pray for Kelsey’s complete and total earthly healing.

“Lord, the one who you love is sick.” You do what is best for her out of your great love, but my heart pleads for You to bless her with a full healing of her body here on earth!