Slideshow Image 0 Slideshow Image 1 Slideshow Image 2 Slideshow Image 3 Slideshow Image 4 Slideshow Image 5 Slideshow Image 6 Slideshow Image 7 Slideshow Image 8 Slideshow Image 9 Slideshow Image 10 Slideshow Image 11 Slideshow Image 12 Slideshow Image 13 Slideshow Image 14

Tuesday, April 22, 2014

Still waiting

“God is never at a loss to know what He’s going to do in our situations. He knows perfectly well what is best for us. Our problem is, we don’t know.”
Charles R. Swindoll

It has been over a year since this hellish disease took over my body and my existence. You think I would have the waiting game down to a perfect art. Um . . . I don’t. By nature (no shocker here), I am an incredibly impatient person. I crave control. I need a game plan. I like seeing the finish line. What does a rare stage IV cancer offer in regards to the above – none of these. None. Zip. Zero. Zilch. Add in the most intense, constant pain I have endured thus far, and my patience and trust in what God is doing evaporates quickly. What replaces this trust and determination to endure is frustration and discouragement. (And this is after reading my Jesus Today devotional which was about the secret of being content – spiritual sigh.)

Needless to say, I do much better when I am not hurting constantly. The radiation oncologist I met with on Friday said nerve pain is one of the most difficult pains to treat, and I concur – two-fold (with my arm and now my back). Unfortunately there has still been no word from MDA. Nothing. Silence. Such a stark contrast from the care and attention we received in Tulsa last week. Even when I call MDA, I have to leave a voice message - I have had no human contact with them since we reached out to them last Thursday. And trust me, I have been reaching out to them. It begs the question, do we move forward with treatment here? And there are so many other questions . . . 

Can I keep moving forward like this? Am I moving forward? How much longer can we wait to resect the tumor in my calf? It is painful. It is growing. I can feel it. What anatomy will come out with the resection? Am I bound to be a walking Frankenstein when this is all over? And what about the constant nerve pain radiating from my spine to my ribs? Can they even remove this cancer with stereotactic radiation? Is it wrapping itself around a nerve like it did in my arm? Is this how I will feel the rest of my life . . . and how long will that be? Oh yes . . . and then there are my lungs. What hope for them? This beast has taken over every part of my body (literally) from limb to limb. Every doctor we have met with has reiterated how nasty sarcomas are. I can’t start my full nutritional therapy (which I am very optimistic about) until these issues are crossed off the list. Indeed, it’s a painful waiting game.

Although we did have a nice Easter surrounded with family, Alexa and I did not attend church. I never got out of my pajamas, and she didn’t get to wear her pretty Easter dress. We didn’t get to hide Easter eggs and take pictures. We didn’t get to attend the Easter service and sing resurrection songs. And we didn’t do her resurrection eggs.

I watched my daughter jump on a trampoline today with her “Pop” who is 65 years old. I can only lay in bed and watch . . . and cry. Why? Because I hurt – physically, of course, but my soul aches. I want to be a mommy, a wife, a daughter, a friend. I feel worthless. My parents are living with us indefinitely. Mom says my job is to heal, but I don’t even think I am doing that well because I don’t know how people heal in pain. I guess what I am saying in so many words is that we need God to move. We are asking Him to move, because He has been silent for several days.

Bottom line, I am weary. We would love to know the direction He wants us to go, and we are crying out for that direction to be made clear sooner rather than later. I am weary of making follow-up phone calls, leaving voice messages and sending emails. Cancer is only growing (and quite possibly spreading) as we wait because I can’t move forward with my new treatment. Of course, we are praying that it isn’t but I don’t have an impressive track record. Yes, I know He is sovereign. I know He is trustworthy. But I also know what He has allowed me to walk through over the last twelve months. It hasn’t been a vacation. I am so ready to move forward in this fight and get this filth out of me.

The last several days have felt like “Saturday.” A “Saturday,” you say? Saturdays are devoted to fun and relaxation. Well, not the Saturday following Jesus’ crucifixion. Saturday was that in-between time. The “take a deep breath and wait and see” day. This devotional says it best. Pardon my delayed Easter post, but I had to share this. Ty Karen for passing it along to us. It echoes the cry of my heart.

In Between Despair and Joy
by John Ortberg from Who Is This Man?

So far as we know, there has only been one day in the last two thousand years when literally not one person in the world believed Jesus was alive.

On Saturday morning after Jesus’ crucifixion, the disciples wake after not having slept for two days. The city that was screaming for blood the day before is quiet. Crowds have disbanded. Jesus is dead.

What do they do on Saturday?

It’s strange that the two days on either side of Saturday are so heavily discussed. Some of the brightest minds in the world have devoted themselves primarily to those two days; they have been across the centuries maybe the two most studied days in history. The Bible is full of what happened the day before, the day Jesus was killed. And the next day, Sunday, is the day believers say gave birth to the most death-defying, grave-defeating, fear-destroying, hope-inspiring, transcendent joy in the history of the world. Pentecostals still shout about it. Charismatics still dance because of it. Baptists still say Amen! over it. Presbyterians still study it. Episcopalians still toast it with sherry. Some people think of Sunday in mellower terms, as a metaphor for hope. And others think of it as a dangerous enemy of logic, reason, and mortality.

Let’s just leave Sunday alone for now.

This isn’t Sunday. This isn’t Friday. This is Saturday. The day after this but the day before that. The day after a prayer gets prayed but there is no answer on the way. The day after a soul gets crushed way down but there’s no promise of ever getting up off the mat.

It’s a strange day, this in-between day. In between despair and joy. In between confusion and clarity. In between bad news and good news. In between darkness and light.

Even in the Bible - outside of one detail about guards being posted to watch the tomb - we’re told nothing about Saturday. Saturday is the day with no name, the day when nothing happened.

Now only a handful of followers remain. Friday was a nightmare day; Friday was the kind of day that is pure terror, the kind when you run on adrenaline. On Saturday when Jesus’ followers wake up, the terror is past, at least for the moment; the adrenaline is gone.

Those who believe in Jesus gather, quietly maybe. They remember. It’s what people do. Things He said. What He taught. Things He did. People He touched or healed. They remember what it felt like when this Jesus wanted them. They remember their hopes and dreams. They were going to change the world.

Now it’s Saturday.

Maybe they talk about what went wrong. What in God’s name happened? None of them wants to say this, but in their hearts, they’re trying to come to grips with this unfathomable thought: Jesus failed. Jesus ended up a failure. Noble attempt, but He couldn’t get enough followers.

He couldn’t convince the chief priests. He couldn’t win over Rome to make peace. He couldn’t get enough ordinary people to understand His message. He couldn’t even train His disciples to be courageous at the moment of great crisis.

Everybody knows Saturday.

Saturday is the day your dream died. You wake up and you’re still alive. You have to go on, but you don’t know how. Worse, you don’t know why.

This odd day raises a question: Why is there a Saturday? It doesn’t seem to further the story line at all. We might expect that if Jesus was going to be crucified then resurrected, God would just get on with it. It seems strange for God to spread two events over three days.

In its own way, perhaps Saturday should mark the world as much as Friday and Sunday.

Friday, Saturday, and Sunday lie at the heart of the ancient calendar. They attributed great significance to the notion that this event was a three-day story.

The apostle Paul wrote, “For what I received I passed on to you as of first importance: that Christ died for our sins according to the Scriptures, that He was buried, that He was raised on the third day [Paul adds again] according to the Scriptures.” The Old Testament Scriptures are filled with what might be called “third-day stories.” When Abraham is afraid he’s going to have to sacrifice Isaac, he sees the sacrifice that will save his son’s life on the third day. Joseph’s brothers get put in prison, and they’re released on the third day. Israelite spies are told by Rahab to hide from their enemies, and then they’ll be safe on the third day. When Esther hears that her people are going to be slaughtered, she goes away to fast and pray. On the third day, the king receives her favorably.

It’s such a recurring pattern that the prophet Hosea says, “Come, let us return to the Lord. He has torn us to pieces... After two days He will revive us; on the third day He will restore us, that we may live in His presence.” All three-day stories share a structure. On the first day there is trouble, and on the third day there is deliverance. On the second day, there is nothing - just the continuation of trouble.

The problem with third-day stories is, you don’t know it’s a third-day story until the third day.

When it’s Friday, when it’s Saturday, as far as you know, deliverance is never going to come. It may just be a one-day story, and that one day of trouble may last the rest of your life.

* * *

I said before that Saturday is the day when nothing happens. That’s not quite right. Silence happens on Saturday. After trouble hits you, after the agony of Friday, you call out to God. “Hear me! Listen to me! Respond to me! Do something! Say something! Rescue!”

Nothing.

On Saturday, in addition to the pain of Friday, there is the pain of silence and absence of God.

What do you do on Saturday?

You can choose despair. Paul writes about this: “How can some of you say that there is no resurrection of the dead?” In other words, apparently some people said, “There is never going to be a Sunday. It’s Friday. Get used to it. Do disappointment management, because that’s as good as it’s going to get.” Some people - silently, secretly - live here. You can choose denial - simplistic explanations, impatience, easy answers, artificial pleasantness. Hydroplane over authentic humanity, forced optimism, clich├ęd formulas, false triumphalism.

Paul wrote to Timothy that some “say that the resurrection has already taken place, and they destroy the faith of some.” In other words, apparently some said, “It’s already Sunday. The resurrection has already happened for all of us, so if you’re having any problems, if you’re still sick, if your prayers aren’t being answered, you just don’t have enough faith. Get with the program.” Or there is this third option:

You can wait. Work with God even when He feels far away. Rest. Ask. Whine. Complain. Trust.

Oddly, the most common psalm is the psalm of complaint. The Saturday psalm. God, why aren’t you listening?

* * *

An ancient homily spoke of this strange day: What happened today on earth? There is a great silence - a great silence and stillness. A great silence because the king sleeps. God has died in the flesh, and hell trembles with fear. He has gone to search for our first parent as for a lost sheep.

The Apostles’ Creed says Jesus descended into hell.

Somehow no suffering you go through is suffering Jesus will not endure in order to save you.

From a human standpoint, we think of the miraculous day as Sunday, the day the man Jesus is risen from the dead. I wonder if, from Heaven’s standpoint, the great miracle isn’t on Saturday. When Jesus is born, the skies are filled with the heavenly hosts praising God because that baby is Emmanuel, God with us. Somehow God in a manger, somehow God in a stable, somehow God on earth. Now on Saturday the angels look down and see what? God in a tomb.

The miracle of Sunday is that a dead man lives. The miracle of Saturday is that the eternal Son of God lies dead.

So Jesus Christ defeats our great enemy death not by proclaiming His invincibility over it but by submitting Himself to it. If you can find this Jesus in a grave, if you can find Him in death, if you can find Him in hell, where can you not find Him? Where will He not turn up?

IMG_0879

Image by Shannon Ho

I am so thankful that in the redemption story, there was a Sunday. Thank you Jesus! Ultimately, in the midst of my whining and “grumpy-pants” attitude, I am utterly grateful the Lord has “got this.” As the Swindoll quotation says above, God knows what He’s doing. The problem is, we don’t. And, that, perhaps, is the most humbling (and painful) pill to swallow. Ultimately, all we have is Him. In his book Perfect Trust, Swindoll also says, “Leaving the details of my future in God’s hands is the most responsible act of obedience I can do.” Oh brother (as Alexa Hope would lament)! This 35-year-old mother has a lot of work to do in the obedience category, but it does seem the Lord is giving me several opportunities to exercise this choice.

May you be challenged and encouraged by the beautiful, thought-provoking devotional above. No doubt, we all face our own “Saturday”. But we can take hope. Because of Jesus’ Saturday -- Sunday is coming.  Blessings to all of my precious warriors who keep up the good fight, even when I am immensely weak.

Sunday, April 20, 2014

Updates! Get your updates!

Hey all, a guest post from Chris. I know, I know, disappointing, but perhaps better than no post at all. Kelsey is sad that she has not been able to post, but she has recently been experiencing the worst pain she has ever felt, so has not felt like sitting down and writing a post. In the spirit of my being a guy, I will probably be a bit more brief than Kelsey, but in the spirit of trying to love and honor my wife's wishes, I will try to give you some details as well. And, when she is feeling better, she can add more details as she sees fit.

Time in Tulsa

We were very encouraged to meet with the doctor and all of his staff in Tulsa. It was wonderfully refreshing to walk in the door to an enthusiastic, "You must be Kelsey" and a big hug for both of us from the office manager. That definitely doesn't happen everyday at MDA! Adding in the spiritual component was wonderfully refreshing as well. Each person we met mentioned that they would be praying for us and would love to hear updates along the way so that they could be specifically praying. We learned some good information from the doctor - some nutrient deficiencies to focus on, some areas of her body that are a bit stressed from cancer and chemotherapy, and some ways that we can seek to address those issues through nutrition. It was wonderfully refreshing to hear the doctor's "mini sermon" (as he called it). He encouraged us to be praying and seeking what God would have us do now to serve Him. The doctor went on to say that as far as he knows, there is no difference between Kelsey's life expectancy and his, and that we should start off every day asking, "Father, what can I do today to serve you." We walked away encouraged, with some good information about how we can get her body healthy and with the doctor's blessing to "take some wind out of the sails" of the cancer by getting the tumor along her T6 and T7 treated and the tumor in her right calf removed. Kelsey asked how hopeful the doctor was that we could address Kelsey's cancer. He said that he was encouraged with her blood work, with her age, and with the fact that she has really had a minimal amount of treatment. He also said that her strong will probably won't hurt either and that serving a big God is the best part of the equation.

Time in Edmond

So, two IVs, several hugs, more information than we could hope to process right away, and a colonic for Kelsey, we were on the road back to Edmond. Kelsey rested on the drive home, but it was quite apparent as we were getting closer to Edmond that she was in a whole bunch of pain. Over the last few days Kelsey has rested due to the intense pain she has been experiencing. She has moved between the bed and a chair until sitting becomes too uncomfortable and then she moves back to the bed to rest. She met with a radiation oncologist at Mercy on Friday who said that she could get Kelsey connected with a doctor that does cyber knife radiation (fairly similar to stereotactic radiation) here in OKC. We have reached out to Dr. Brown (stereotactic) and Dr. Lin (surgery on her right forearm) at MDA to see about scheduling there to try to get her in. Kelsey really trusts both of them as they have both done some great work so far.

And beyond . . .

We spent a fun afternoon today here in Norman with all of Kelsey's family. Kelsey did well most of the day until the evening when her pain medication started to wear off. Very special to have an Easter celebration with them - remembering the incredible miracle of Christ's resurrection and praying that in a similar way, Kelsey's body can be raised up from this death of cancer to serve God in ways we would have never dreamed possible.

Please be praying

As always, we so appreciate your prayers. Walking through this with hope would be impossible without your prayers, love and support.

-- Pain. Kelsey has recently started taking Lyrica, which seems to be helping with the pain in her back and calf more than other medications, but it also tends to make her a bit drowsy. Pray that the pain is manageable during this time of waiting to hear from MDA and making decisions about the next steps - intense pain saps Kelsey's desire to fight. She mentioned tonight that each step she takes now carries a reminder that the tumor is growing in her calf since each step is painful.

-- Divinely quick turnaround times at MDA. Since Kelsey is in such pain, the sooner she can get in to get treatment for her spine and calf, the better. Also, the sooner she has these procedures done, the sooner we can start on the full regimen of treatments from our doctor in Tulsa.

-- Wisdom. Treatment here in OKC, treatment in Houston? Can we do more infusions while we wait? How can we be creative with healthy foods for Kelsey so that she doesn't get burned out on eating the same thing all the time? How can we serve God now and in the days to come?

-- Rest. Pray that Kelsey can get rest and that it will be used to continue to restore her body so that she can bounce back quickly from a round of radiation and surgery.

-- Healing. God raised Christ from the dead - allowing we who were dead in our sins to have a restored relationship with him. Healing Kelsey of a cancer for which traditional medicine has no good answer is no big deal at all in His eyes. We seek to serve Him now and in every day that He may give us.

Monday, April 14, 2014

An update–plain & simple

IMG_3456
The Kennedy crew at the Sooner’s spring football game on Saturday.

I feel like I have a great deal to share. So many posts in my head that have yet to be fully processed and published. However, it seems when I finally have the time and motivation to sit down, I am either too exhausted, too melancholy or hurting too bad. And so, tonight, you will get an abbreviated update (at least for me) with a whopping pictorial expose on our lives over the past couple of weeks. (My apologies for picture quality, I used my iPhone.) From Houston to Norman to Dallas and back again. (Indeed, we rarely stay in one place very long. I honestly have no idea why I ever unpack.)

Speaking of . . . 

Tomorrow, I will head to Mercy hospital in OKC for a 6:30am MRI of my T/L spine. (The pain in my back/ribcage continues to increase and we’d like to have a closer look to take to my Tulsa doc this week in hopes he has some solutions.) Then, on Wednesday at 2:45pm, Chris and I will be in Tulsa for some more tests and to meet with my potential new holistic-minded doc. We should have a personalized treatment based on my test results after our appointment on Thursday at 9:30am. The nurse even mentioned the possibility of an IV infusion – of what – I am unsure, but I am hopeful the port I desperately want removed (but remains sticking out of my chest) will come in handy.

Just so you know, Chris and I enjoyed our phone consult with the doctor on Monday. Thank you for praying over that. We have been pleased with our experience with the Tulsa doc thus far. Why?

-- The office manager identifies me by name (not a medical record number) and she is incredibly efficient. I can reach her almost immediately by phone or email. How refreshing!

-- The doc is a believer. It is wonderful to mention the name of Christ and know he is in agreement. How crazy to think we could pray with him at our appointment!! How thrilling to know he is knows the Ultimate Healer. Hooray!!

-- The doc’s ultimate concern is for us to have a total peace about the game plan. I love feeling there is no judgment or string’s attached with our decision. We are free to move forward as the Lord leads.

-- The doc is open to medical means as well as holistic to achieve healing. It is so rare to find someone open-minded and educated/experienced in both practices. This is good news as stereotactic radiation and even another surgery at MDA are very likely in order to control the cancer and manage my pain. (More on that in the prayer requests below.)

Okay – enough writing (at least for now). Many of you have ben praying our family would enjoy special times together, that I would find joy each and every day. Ultimately, that I would truly be able to live in the midst of this fight. Well, here’s how God has been answering those petitions. I have definitely attempted living more fully – not always successfully – but worth the attempt. Now . . . if we could get the pain to quiet down at night so I could sleep without narcotics and if He would rid my body of this filth – forever – we’d really be in business, right!?

I love each and every one of you, my hard-core warriors, because you are willing to get dirty in this battle with me. Not every day has been easy. Nights are definitely hard. There is still so much I am trying to process but hope is not lost. There is still more life to live, more bold & expectant praying to do, and more glory for God to receive in this unexpected journey.

HOUSTON

Since we had an open weekend during our last visit to MDA, we had oodles of fun at the Children’s Museum of Houston. Alexa had been begging to return since her inaugural visit in the fall. We also enjoyed lots of time with nature. Thank goodness the only times I captured from this visit were good memories.

IMG_3355
IMG_3359
IMG_3346
IMG_3353




IMG_3363
Our fave stop at Rice Village – The Chocolate Factory. Rice Village is the equivalent of OU’s Campus Corner . . . on steroids.

IMG_3372
The azaleas were in full bloom and just amazing!!

IMG_3366
Alexa Hope modeling the azalea she picked.

IMG_3370

IMG_3373



NORMAN

Alexa and I stayed with my parents for a few days after our return from MDA. Then, we trekked back to Norman to spend a few days with Chris before he flew off for a conference in CA. During our short stint at home, my life-long bestie, Denise, and her son, Deacon, visited us from CO.

IMG_3387

DALLAS

With fresh laundry in tow, Alexa and I headed back to Dallas to spend five more days with Mimi & Pop (where we are treated like royalty). Apparently, Pop worked Alexa over every day (and vice-versa). She actually napped in my arms twice. This was a rare gift, and I treasured every second rocking my sleeping beauty.

IMG_3401
IMG_3408
IMG_3413

A play date with our dear friends who moved to Plano. These are Alexa’s future tall friends – Kennedy & Reagan. Baby sis, Lydia, was lounging with her Mama, Joanna.

IMG_0154

Alexa yelled at me one evening to see what she was doing. Apparently, this is how the younger generation exercises and enjoys entertainment on their iPad. Maybe if I had worked my core like this as a youngster, I wouldn’t have these back issues.

IMG_3415

The highlight of this trip was getting back in the saddle again. It had been almost two years. The ride was euphoric, exhilarating, intoxicating. It felt so good to feel a burn in my legs. I was only able to ride seven miles because my left pelvis started hurting and my radiation doc said I could only try cycling until it hurts – don’t push it (that was so hard for me to do because the rest of me felt pretty awesome). It was so beautiful, because on that ride, I didn’t have cancer. I felt like my old self – just really out of shape. Nothing on that ride hurt minus my pelvis. However, that evening was when my back pain greatly increased. Unfortunately, I haven’t gotten on the bike since because I think two wheels may be have been the culprit to my increased pain. So sad, because on that ride, I felt the most alive (and normal) than I have in a long time.

IMG_3422
I had to take a pic of my right hand. In September, I was told I probably wouldn’t have a right hand. And that is why we still have hope, warriors, because I DO still have my right hand. He delivered my arm from the beast, and He spared the three fingers I needed to shift gears and brake. Now, we gotta get my back into cycling shape.

I also purchased Alexa an official tee and hot pink t-ball bat because I think she has pretty decent hand-eye coordination. Of course, I loved playing t-ball & softball so it was a bit self-indulgent. Unfortunately, I think swinging a bat didn’t help my back either.



FALLS CREEK

Upon our return to Norman, Hol, invited me to a women’s retreat at Falls Creek this weekend. We only attended the Friday session as I was eager to get home to spend some time with Chris/Alexa as well as sleep (or attempt to sleep) in my own bed. We had a great time reminiscing as we explored the youth camp we had grown to love and that had challenged us spiritually in our teenage/college years. It wasn’t quite the same with the posh, new conference center but there will always be something very special about the campground, even with air conditioning.

IMG_3440

In front of good ol’ Purcell cabin. So many wonderful memories were made here.

IMG_3426

I finally felt grown-up enough to sneak up and see the boys’ quarters of the cabin. Oh wait, this was a women’s retreat and they were remodeling the girls’ side – oh well. I felt like a rebel for a moment. Yep, I’m living it up.

IMG_3431

Hol at Devil’s Bathtub. Apparently, it has been renamed Boulder Springs. Okay – so, like I said, this is Hol in front of Devil’s Bathtub. We also walked up to the Prayer Garden and enjoyed some quiet moments of reflection and prayer.

NORMAN

IMG_3467
The highlight of the Red & White scrimmage was reconnecting with high school friends, Allyson & Amy. I honestly forgot their was a game because I was so immersed in conversation and laughter as the memories came flooding back. It was a wonderful afternoon. All of the laughter was good medicine, I sat through the whole game and never hurt. We plan on reconnecting for game days. Love ya ladies!! It felt like nothing had changed.

Alexa didn’t last too long during the game, so she and Daddy headed to a local park to wait on Mommy to finish her mini-reunion. Alexa loved laying in the clover beds. I want to sneeze just looking at her.

IMG_3459
IMG_3473
IMG_3462
A’s birthday dress. She finally got to wear it this Sunday because Mommy finally ironed it!!

We had a fun thunderstorm roll through today, even included a little hail. Once it cleared up, Alexa was ready to go puddle-hopping. We had a blast finding the best puddles and splashin’ away.

IMG_1550
IMG_1586
IMG_1599
PRAYER REQUESTS
- If you are a part of the “Praying for Kelsey” Facebook page, I apologize for any redundancy.

-- I won’t stop boldly asking and believing for total, complete God-sized healing!! NO MORE CANCER!! NO MORE GROWTH!! NO MORE SPREAD!!

-- Protection of my lungs and all organs. If indeed there is cancer in my lungs, for it to dissipate completely.

-- For pain relief for all of the areas which hurt on a continual basis – mainly my upper right back, right ribcage (front & back) and sternum. There is a a lot of nerve sensitivity throughout this area. I am weary of taking meds (day & night), and I am concerned with how this might interfere with holistic methods. But, I have to sleep at night and function during the day. It’s a conundrum. Please pray I would be able to get good night of rest again.

-- Would you specifically pray for pain-relief and the ability to lay still during my MRI tomorrow? An MRI with contrast of the T/L spine is lengthy and I am very concerned I won’t be able to lay still on the hard surface that long. This is the most trouble I have had sleeping comfortably with pain since my diagnosis, so it is unsettling to think about being stone still for over an hour inside a tube.

-- Wisdom to know if we should pursue getting the tumor in my right calf resected at MDA while it is still a reasonable size and “easier” to remove. The tumor is bothersome when I move – which is often.

-- Wisdom for our family as we seek His will concerning this next phase of treatment. We want to clearly hear God’s voice on what is best for me and sense His peace.

-- For great wisdom on the Tulsa doc’s part to discern the best course of action for me, to be willing to be aggressive and think outside-of-the-box when it comes to healing a compromised body like mine.

-- As much as I am ready for this to end, I don’t want to waste this suffering. For our family to be still and sensitive to how the Spirit leads us each day, so we can make the most of every opportunity to glorify Him.

-- More laughter. More endurance. More fight. More healing. Less pain.

-- For complete trust in the Lord and what He is doing. For our eyes to stay focused on Him in hope and confidence. To drown out noise and the Enemy’s mocking voice.

Thursday, April 3, 2014

What we know & moving forward

I have composed and recomposed this post several times in my head as the reality continues to sink in. Although I am still unsure what to say and how to say it. Although I’d much prefer seeing Alexa Hope’s delight-filled birthday pic at the beginning of the blog, it’s time to say something.

And so, here you go . . .

No need to keep everyone (if there is anyone left) in suspense about our recent trip to MDA. In this case, no news isn’t good news but . . . trust me . . . you didn’t want to read my thoughts Monday or Tuesday or Wednesday. In fact, I’m not entirely sure I am ready to share much of anything yet, but I do feel it is necessary to share what we know so those (who are more emotionally stable and have no idea what is going on) can pray more informed, more persistently and even more boldly. We would definitely appreciate that moving forward.

No, we did not receive the news we wanted or had hoped for on Monday. It was not the news most of you had boldly prayed for and anticipated. My PETscan/CT scan revealed the cancer is growing in my right calf and lungs. Yes, the cancer has spread to my lungs. The place I had asked specifically for us to pray it wouldn’t.

What does that mean? The Votrient (chemo pill) is not working to stop the spread of the cancer or kill it. And so, Dr. Benjamin presented us with three options for future treatment. He caveated each of these (as he always has) with the fact that none of them have any proven success with my disease and all of them will make me more sick.

– One is a very hard-hitting chemo that would require hospitalization.

– Two is taking a combo of the Votrient and one of the IV chemos (Gemzar) I took this summer. Keep in mind both of them didn’t work independently and together I would have even more harmful side effects.

– Three is an experimental treatment in which they inject bacteria into the tumor site in the hopes it jump starts my immune system. This experimental treatment was not created for my particular cancer, it is just another shot in the dark.

We could both tell he wasn’t optimistic about any of these options but he was obligated to offer them to us. We could also tell he was fairly confident they wouldn’t do much good, if any. He said the best thing would probably be for me to go home and think through these options (no rush, of course, because he wasn’t the one with a seemingly unstoppable cancer growing inside him). Anyway, his theory was to go home and enjoy feeling as good as I can for as long as I can. And when I no longer feel good, MDA could treat symptoms as they bothered me. For example, they could remove the tumor in my calf as it continued to grow or they could remove some of the tumor from my lung (removing some of my lung at the same time) if it complicated my breathing, etc . . .

My head was buried in my hands most of this appointment as I shook my head (because I had no desire to pursue any of the harmful/statistically worthless treatments being offered and I understood the implications of this news) while I also tried to unsuccessfully hide the continual stream of tears running down my face. I think I looked Dr. Benjamin in the eye four times during this visit. However, there was a powerfully defining moment when I looked at him and asked a question of clarification about the experimental treatment. He, point blank, looked me in the eyes and said, “There is nothing that will eradicate your disease.” Period.

I don’t know if we asked any more questions after that blanket statement. I was ready to run out of the room because I knew, in my heart, we were done with treatment at MDA. I was angry at Dr. B because I felt like he had been lying to us when Chris had asked almost a year ago “what the goal was of treatment – aiding quality of life left or killing the disease.”  Of course, Dr. B said “killing the disease.” I was mad that little to no money goes to sarcoma research (when’s the last time you attended a “sarcoma walk?”) so there is nothing to offer me that has any success or is even remotely targeted to my disease. I was angry we stayed at MDA as long as did with some stupid pipe dream that medicine was going to work while all it did was made me weaker. And . . . I was angry at God – the One who was allowing all of this hellish mess. My heart was broken, and I was very cynical.

When Dr. B leaned over to hug me, I reached out my right hand, shook his, said thank you and goodbye. As much as I have disliked Dr. Benjamin throughout this process, I will say he was the most “human” at this appointment and he walked out of the room like a puppy with his tailed tucked between his legs because he knew he couldn’t help me. But I also believe he knew that all along.

When the door shut behind him, Chris said, “It is clear God has stripped everything away so that all we can do is trust Him.” He took the words right out of my mouth. We were also on the same page as far as what we felt was next. No more poison . . . We are not willing to try any more treatments without any decent percentage of effectiveness, and I am sure as heck not going to do anything that guarantees I will feel sicker than I have already – and for what – more growing tumors, a weaker body and more disheartening news!? Forget it!!

I am always ready to leave MDA (anyone reading this blog knows that), but on this particular day, I couldn’t escape the ninth floor fast enough. When we got in the car Chris said, “I am so ready to be done with medicine and being told what we can and cannot do.” You may think this strange, but I was too and what he said with a sense of hope instead of despair encouraged my heart as well. For me, MDA symbolized despair – at least my encounters with Dr. Benjamin. I was thankful to see it fading away in my rear-view mirror.

You see, many of you heard about my news on Monday and believed I was given a death sentence. Perhaps I was medically speaking, but even in deep, deep sadness (and a heck of a lot of tears), we have not given up hope the Lord is still very much in this and the hope of a full, complete, God-sized healing on this earth. We just know medicine won’t be the means. And quite honestly, although I desperately wanted medicine to be that means because it would be much easier, I never felt confident it would be. Don’t get me wrong, I am incredibly grateful for medicine and the technology that has helped me throughout this process. I am thankful for my orthopedic surgeon, Dr. Lin. I am thankful for stereotactic radiation and Dr. Brown. I have been continually thankful for scans and the sweet techs who perform them. And, my goodness, I am grateful for Hydrocodone and Celebrex, but I am DONE with poisons that do nothing but harm me. Yes, some medical treatments work for cancer patients. Unfortunately, I am not one of them.

Now – we have our eyes set on healing my body through a more holistic approach of diet, nutrition and exercise. We are focused on feeling good. Because – I don’t want to merely survive . . .  I want to live. We had already adopted some of this lifestyle but we couldn’t go whole hog as MDA didn’t want holistic methods to interfere with their treatment methods. We are considering and praying through some options to see what would be the best fit for me and if I will even be accepted into the programs. We will have a phone interview with a holistic doctor in Tulsa on Monday morning to get his thoughts on the next steps. We are applying to the Gerson Institute in San Diego. We will keep you posted on the next steps of this journey as we know more.

And yes, I realize God is still sovereign over all of this (which is the biggest reason I am still struggling). My theology is pretty pathetic right now. I am still processing and my heart is still broken but I do know God is in control of my course, no matter what. Does that bring me comfort – not right now. But, He is all-powerful. He could heal me this instant without any change in my lifestyle. He could’ve healed me on meds. He can do whatever He pleases, and our prayer would be that He would heal me on this earth so I could spend a long life glorifying Him. At the end of the day, He will do as He pleases (i.e. my results on Monday) but what do we have to lose by asking BIG things from a BIG God? If He is as BIG as we know He is – then why not ask God-sized requests with child-like faith? At this point we know it will only be this BIG God who can miraculously heal me.

Although I am still very sad and I tear up just holding Alexa Hope, I still have a lot of fight in me. Very few of you knew me before I became Kelsey Kennedy. The Lord did a great work in my life to smooth off many of my rough edges. He made me more feminine, less feminist. I chose a career inside the home not out (which shocked so many of you). I changed – a lot (and in good, godly ways). However, this stupid cancer has resurrected many aspects of the ol’ Kels. The gal who was a hard-working, disciplined competitor. The strong-willed girl who took the answer “no” as a challenge. The gal who set her mind to something and saw it through no matter what. Well, that girl is back.

I believe I let medicine instill a lot of fear in me. I put a lot of trust in it. And, I believe it also made me lazy to think I could sit back and let it do all the work. Boy – was I wrong! I am ready to fight because I have to. Because “medical scans” say things look grim, and gracious, that makes me mad, I don’t plan on rolling over and giving-up. If I am going down, I will go down with a fight (and my daughter will see that her mama is not only brave but strong and tenacious). God gave me a strong-will and the stubbornness of a mule – not always a beautiful trait – but it will come in handy now. It is time to tell this filth in me where to go. Medicine couldn’t do it, but I am hopeful that with the persistent, believing prayers of my “warriors,” oodles of encouragement, a holistic approach to healing, a great BIG God, a hope-focused fight and the heart of a warrior – we can destroy the very thing trying to destroy me . . . and only God will get the glory.

I want to send a huge gratitude-filled hug to all of you who have already been on your knees petitioning for God-sized earthly healing, who have sent me encouraging texts, Facebook messages and cards. I realized early on in this battle that I wouldn’t be able to personally respond to all of the messages but I do read them and am encouraged by them. Keep’em coming! I need a lot of cheerleaders heading into this next step because it will be unconventional and require lots of time and incredible discipline. I need you to remind me I am strong and that anything is possible with God. I need reminders to focus on living a long life and fighting not reminders of my diagnosis and its implications (the Enemy reminds me of that every moment of every day and I get very sad). Don’t let me give up, even when I want to!! I love my warriors and God is doing a work in all of us. Yes, I have let Him know I don’t appreciate the means He is using but I am thankful you are in this with me.

On Monday, I thought my world and every dream I ever had was coming to an end. I thought the night had come . . . but perhaps, just maybe, a new day is dawning and hope is rising with it. Will you join me?

IMG_3160
(Shar, thank you for this poignant graphic reminder of where our hope & trust needs to be. Ty for the reminder that the strength for this fight does not come from New Age mantras but from the Almighty One.)

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

PRAYER REQUESTS

- Complete healing from cancer and a long life with my family to glorify God
- NO MORE SPREAD! NO MORE GROWTH!
- For total trust in the Father and what He is doing
- For strength in the daily spiritual/physical battle as I am still dealing with continual pain
- For wisdom in the next steps – lots and lots of wisdom
- Encouragement and endurance for my caretakers – esp Chris, my parents & my sis
- For direction, timing and even funding to pursue the next steps.
- For wisdom how to live each moment fully especially with Alexa Hope. Wisdom in how to communicate what is happening.
- I so desire to feel good again so I can exercise (healed herniated discs, clean calf/lungs, no more spread). I have even had my biked tuned up in the hopes I can start cycling again.
- For hope, hope, hope and a strong-will to fight this disease head-on.
- NO MORE FEAR!

***Some very sweet sisters have created a Facebook page called “Praying for Kelsey.” If you would like to be a part of it, simply search for the group and request to be a member.

Saturday, March 29, 2014

A pirate’s life for me!

IMG_1399
Although Alexa’s 4th birthday was March 13, we had the official celebration “pirate style” on Saturday (March 22) at my sister & bro-in-law’s in Edmond. I probably went a bit over-the-top with the theme this year, but I wanted Alexa Hope to know just how very much she means to us. I want every birthday I am privileged to be with her to be a big celebration. Plus . . . I like the details. It’s just fun for this Mama. However, I would be remiss if I didn’t say I had A LOT of help making it all come together. I always have big ideas and lots of vision. I am horrible at executing it. Many, many thanks to ALL of my family for helping make our lil’ pirate’s day sooooo special. Yo ho! Let’s go!!

IMG_1493
IMG_1543
I am always at a loss with what to do with A’s birthday cards, so we decided to make a visual display on her door this year including friends’ artwork and even her hospital bracelet. I feel like we get more mileage out of the cards this way.

IMG_3310
You will appreciate how excited Alexa was to celebrate her big #4. Maybe she forgot this was the day she got to eat chocolate cake and open presents. Details first, then the party celebration & pirate games.

THE DETAILS


IMG_3300
I decided if God gave me my hand back, I was going to put it to good use. I’m oh-so-thankful to be able to do the things I love again . . . write and draw. No invites purchased off Etsy this year, I made them, took a pic and texted them to the guests . . . it made for cheaper postage too! Chris couldn’t believe I could save money.

IMG_1158
This was the entry table complete with treasure chest and loot for the party-goers including eye patches, pirate hats, bandanas & maps. Alexa’s favorite item (something that Mama’s not too hot about) – the balloons. No doubt, we will probably have these balloons until mid-May. Alexa can’t stand to let them go – even deflated.

IMG_1185
IMG_1191
IMG_1188
IMG_1167
The number “4” served as both a decoration and pinata. Alexa has continuously mentioned a pinata for her party, but I just couldn’t bring myself to buy a “pirate” pinata. I thought the “4” was a bit more tasteful. Even this Mama has limits on the pirate them.

IMG_1196
I wanted to make a “green” banner this year – meaning one we could reuse for other special occasions. This was made from unfinished wooden circles. Chris drilled two holes in each one. The circles were then primed and painted (front & back) with chalkboard paint. I have fifteen circles on-hand for any occasion and can easily switch out the twine for another kind of ribbon.

IMG_1207
For “Jake the Neverland Pirate” fans, this was my nod to Skully. Captain Hook’s hook is in the background. Tic Toc Croc flanked the other side of the banner.

IMG_1234
I tried to stick as close to “Jake and the Neverland Pirate” theme with a mast with blue & white sails.

IMG_1233
Perhaps I am most proud of this handmade version of “Bucky,” Jake’s pirate ship. Back in February, Alexa wanted us to buy her the real “Bucky,” but I couldn’t stomach the cost. So with box cutters, a rehabbed right-hand & many prayers, I fashioned a ship out of cardboard. It was bare bones until I could think through how to make Bucky come to life. With the help of foamboard, duct tape, cardstock, spray-painted twine, dowel rods, painted wooden spools, black markers, a working bell, spinning wheel & a crow’s nest made from a Solo cup – Bucky is ready to set sail. Many, many thanks to my parents-in-love who took all of my ingredients and helped me craft this ship into a beauty. It’s amazing what a ridiculous amount of man hours & a hot glue gun can accomplish! I told Alexa she has to play with this until she was eighteen!!

IMG_1217
IMG_1221
IMG_1226
IMG_1228
IMG_1267
The spyglass and binoculars were made with toilet paper & paper towel rolls wrapped in duct tape and twine.

IMG_1240
I had a blast coming up with the pirate menu and appropriate names. We also served baked potatoes and called ‘em “rocks.”

IMG_1242
IMG_1243
IMG_1244
IMG_1246
IMG_1265
IMG_1252
The orange-tinged saltine crackers came from a cracker mix I got at Occasions in Norman. It was a-m-a-z-i-n-g!! If you need an easy appetizer. This is it! I can’t remember the name, but I can get it for you if you are interested.

I’d be remiss if I didn’t include Rylen’s amazing nails she painted just for A’s party. Although it is upside-down, Rylen painted “A is 4” on her ring finger. A gal suggested Rylen should be hired out to paint nails for girls’ birthday parties. I agree wholeheartedly. If Rylen can do this sort of artwork on her own hand, what could she do on someone else’s!?

IMG_1464

THE GIFTS

We started out with a treasure hunt where Alexa had to find her presents (hidden throughout the house) based on the locations marked on her treasure map. She had a blast.

IMG_1271
IMG_1274
IMG_1280
Alexa checking out birthday loot with her friend, Abram, who was visiting from Washington DC.

IMG_1310
IMG_1290

IMG_1318
IMG_1324
IMG_1336
Even sweet Abram got into the mood with a Jake wig and hook.

IMG_1357
Pop & Alexa, no doubt, sharing a silly moment as Pop plays with her new swimming toy.

Mama & Daddy gave Alexa her big gift on Sunday (after Daddy & Opa had a chance to assemble it). Check out her face the first time she caught a glimpse of her trampoline. She loves to jump with her cousins on their trampoline, so we were pretty sure it would be a hit.

IMG_1516

IMG_1541
IMG_1537

THE CAKE
It’s not an official birthday party unless there is official birthday song singing, official candle-blowing, official group picture posing . . . oh, and some official pirate “arrrrrrrrghing.”

IMG_1398

IMG_1404

IMG_1414

Here’s the lively pirate crew in happy, “arghing,” and party-blowing poses. Seriously, the party-blowers this year made an awful noise. Every dog in the neighborhood was howling. Both of our families aren’t afraid to be silly. We are thankful our friends, Jon, Laura & Abram (who joined us from Washington DC) weren’t afraid to join in the fun.

IMG_1381

IMG_1392

IMG_1389
GAME TIME
We had a blast playing some friendly but also competitive games – some with a pirate-theme but mostly just because. We had a timed “wrap your partner in toilet paper” race. There was a timed “hook” the most jewelry game. (Everyone but Alexa had to be blindfolded.) We challenged the kids to see if they could stack five apples (which took the majority of the evening). We all enjoyed a good laugh watching family members try to break the pinata . . .


Alexa finally did the trick with lots and lots of hitting. And, the most fun competition of the day was an obstacle course. Every family member had to participate with an eye-patch minus Alexa. The obstacle course included “rowing” to shore where we had to run up and down the stairs, then hop on stones across “the water.” Then, it was outside to race around the mailbox, throw three bean bags into a hula hoop, spin three times with your head on a sword and “walk the plank.” We all got an ab work-out laughing at dizzy adults try to walk the plank. And just so you know, no adults were harmed making these videos.

IMG_1448

IMG_1474

IMG_1477


FAMILY PICS

IMG_1486

Alexa with Ama & Opa (Chris’ parents – Charlie & Karen)

IMG_1480
Alexa with Mimi & Pop (Kelsey’s parents – Eddy & Marilyn)

IMG_1506

Alexa with Uncle Mark, Aunt Holly, Rylen & Layton – (Kelsey’s sister)
IMG_1369
IMG_1370
IMG_1371
IMG_1437
And . . . that’s a wrap, mateys!! Happy 4th Alexa Hope. We love you!!
IMG_1372