She’s home!

Hey all, Chris again. A successful day today – seamless, complication-free surgery is always a good thing. Not only that, but the tumor is removed from her right calf! Dr. Smith was confident that she got the tumor removed in its entirety. Kelsey is minus her small calf muscle (the soleus), but she has been able to get some good rest today and will be able to walk fine once her leg heals. Right now, there is a good deal of pain when she takes a step, so she is using crutches for the time being.

Immediately after surgery, her back felt pretty good due to all of the narcotics and anesthesia, but all of that has since worn off and she continues to have a great deal of pain. It probably doesn’t help that her leg needs to be elevated over the next few days to help with the healing and that is putting added pressure on her back. Thank you all for your prayers – we continue to thank God for His provision and guidance as we walk through the healing process.

Prayer requests:

-- Wisdom for Kelsey to know if she is up for a trip to Tulsa tomorrow for another round of infusions.

-- Complication-free, quick healing of her calf.

-- Wisdom to know how to deal with the pain in her back before the tumor there is treated. Do we need to meet with a pain-management specialist at MDA?

-- Good rest for Kelsey in the midst of pain.

-- Complete, total healing of Kelsey’s body and no more cancer!

Spring is coming . . .

MRIs, tumor resection, stereotactic radiation . . . all terms which upon hearing generally bring anxiety and despair. However, for this gal who has been fighting a rare cancer that seems to be winning for over a year now, these terms, for a strange, particular reason brought hope today. And no, I don’t believe the narcotics are talking.

For me, spring is coming. Yes, I realize for the “literal” geeks out there, spring is coming. But “spring” means more than just grass greening, buds opening and flowers blooming. It means hope and life. It means renewal and beauty (and the end of pain). And warriors, for the first time my heart believes we are heading in that direction.

Several exciting things happened today (i.e. answered prayers).

MRI OF RIGHT CALF
My MRI went well. I was in quite a bit of back pain but I knew the procedure wouldn't last long, and God's grace got me through. Thankfully, the images were clear.

PRE-OP W/ DR. SMITH
In a weird sort of way, it felt good to see Dr. Smith again. (She was the doc who performed the first biopsy of my right forearm a year ago.) It felt like I was home. The MRI revealed a sizeable tumor in my right calf. She said she could see why I was in a good bit of pain. However, the good news is that it is located in my small calf muscle, not my large one. It is located deep in the muscle belly but not close to any important anatomy. I also found out I won't be lying on my stomach for the procedure (which I was greatly concerned about due to my back pain). The incision will be on the inner calf. Smith felt like this would be a straightforward resection, and I could go home afterwards. Hooray!! All of these answers were huge!

She also wrote me a script for a lidocaine patch to try out on my back. I am wearing it now with a large patch on my back and two strips wrapped around my ribs to my sternum. I believe I felt some relief initially but it has definitely worn off. We'll see if they help in the days of waiting for stereotactic radiation.

Dr. Smith will resect the tumor in my calf at Mercy tomorrow at 8am. I will check-in at 6am.

MDA ANDERSON
Wonderful news from MDA. We heard back from them!! God opened the scheduling doors we asked Him to yesterday. We will be heading there next week for MRIs, an appt with Dr. Brown and simulation for the stereotactic radiation (which will hopefully take place the following week).

Tuesday, May 6 at 8pm - MRI of hip/pelvis
Wednesday, May 7 at 5pm - MRI of full spine
Thursday, May 8 at 1pm - Appt with Dr. Brown
Thursday, May 8 at 3pm - Stereotactic simulation

Although it took almost two weeks of silence and frustration, God is moving mountains for me to receive the treatment necessary to get these tumors removed quickly so I can move forward with the full-on, aggressive holistic therapy my Tulsa doc recommends. I am so ready for the pain to be removed, the tumors to die and the healing to begin. I am so thankful for these answers to prayer.

When Dr. Smith walked into the exam room today, she showed us the MRI image of the large tumor residing in my calf. I gasped inwardly at the horrific mass. Even on a computer screen, its presence looked ominous. However, as Smith relayed the news of its location and its impending death, my heart felt a calm come over it. I clearly sensed the Lord reminding me, "I've got this." Even in the pain, in the questions, in the waiting, He was telling me, "Do not be afraid. Do not despair at what you feel and see. I am greater. I am the Healer. I am still guiding you down My path."

As I was praying about what to write today, the Lord gave me the song, "Spring is Coming," by Steven Curtis Chapman. I have always gravitated to the simplicity and hope in the lyrics. I pray it encourages your heart on whatever journey the Lord has set you upon as well.


Friends, another tumor will see its death tomorrow. I, for one, am ecstatic. Hopefully, in two more weeks, another tumor will receive its death knell. Doomsday is coming for this ugly cancer. God is greater. . . spring is coming.

PRAYER REQUESTS

-- For Dr. Smith and all of the staff involved in tomorrow's surgery. For wisdom and accuracy. For a complication-free procedure with a clean resection of the tumor. For healing to begin the moment it is removed.

-- For continued grace to deal with the constant nerve pain in my back. For God to relieve it and provide rest & relief whenever possible - especially with travel to/from MDA and to/from Tulsa for IV infusions.

-- For the staff at MDA dealing with scans, especially Dr. Brown. For an accurate assessment on what is plaguing my back and how to eradicate it for good. That all of the previously treated areas to be cancer-free and growing bone.

-- When my mind wanders, I think about the spots in my lungs and I begin to fear "what if." I do not want fear to rule my emotions because God is not a God of fear and fear does not help to heal. Pray for faith in the Father to handle everything from this new holistic therapy to spots.

-- For God to maximize every good thing I am putting in my body from infusions to supplements. Let the healing begin.

-- For continued wisdom and trust every step of the way.

Calling all warriors!

Okay friends. I am asking all of us to be pleading with God for His perfect (and hopefully expedient) timing for a trip to Houston to see Dr. Brown, my radiation oncologist.

I just got off the phone with his nurse. (This is the first time I have talked to her since reaching out over a week and a half ago.) I explained the whole scenario to her and asked if we could move my already scheduled MRIs (of my full spine & hip/pelvis) from late May to as soon as possible so we could potentially pursue more radiation on my spine due to the intense & continual pain I am experiencing.

She said she would see what she could do. Oh warriors, I am praying that God would provide a miraculous opening for these MRIs so we could begin the process of full healing as soon as possible. We are hold until then & this is not good.

The biggest reason I am reaching out to all of my prayer support is that I am in so much pain. I desperately need this procedure or at least a better assessment to understand why I am in so much pain. I am weary of sleepless nights and days in bed. I hate living on narcotics (and laxatives). This is not abundant living - this is surviving. I am so ready to play on the floor w Lil' A. I am ready to be present and not simply focusing in the pain. Alexa Hope has been oh-so-patient with her sick mama but it breaks my heart nonetheless.

-- We are pleading for God to provide a way to remove any remaining tumors in my body so we can pursue full-on holistic therapies.

-- We are asking for MRI openings at MDA. We are asking if it is God's will to be treated at MDA, this would happen quickly.

-- In the waiting, we are asking for wisdom in how to better manage my back pain. We are praying for His sufficient grace to cover me when the pain feels like too much.

-- We are asking for a successful, complication-free, complete removal of the tumor in my calf on Wednesday. We are praying over Dr. Kim Smith & her staff.

-- We are asking God to miraculously protect my body from the spread or growth of any more cancer so we can begin the aggressive holistic therapies that can encourage my body to heal.

-- We are asking for more of Him - more of His grace, His mercy, His power, His presence. More of Jesus. We are asking to see more of You!!

Love you warriors! I'll keep you updated with how God answers our requests.

The progress so far

Buckle up, another guest post from Chris. Kelsey was sad she could not post an update, but was in quite a bit of pain this evening, so she is in bed asleep. Thank you Jesus that she is able to at least get some sleep in the midst of her pain! And so, once again, you are stuck with me.

Progress is being made, which is certainly an enormous “yes” answer to our prayers. We continue to be so grateful for the constant intercessions! Here is what has happened since the last update. Kelsey went to Tulsa on Friday for another round of infusions. In the afternoon as she was picking some more treatments up from the office, the doctor came up to her and tapped her on the shoulder and asked if he could talk to her in an exam room. Of course, Kelsey was concerned there was something wrong, but he went on to explain how when he had awakened earlier in the morning, his first thought was that Kelsey should begin the full regimen of treatment as soon as possible. Kelsey then explained things have been moving slowly at MDA, we had heard back from Dr. Benjamin, but he didn’t agree with the course of treatment (stereotactic radiation to the tumor in her back and removal of the tumor in her calf), so would not agree to help in reaching out to the doctors there, but instead encouraged us to come down for more scans and a meeting with a doctor in the clinical trials area. This course of action didn’t sound too exciting, especially after the less than glowing reviews he had given us last time of the odds of success of any of the clinical treatments for Kelsey’s type of sarcoma.

Her doctor listened and shook his head (not disrespectfully, but more like, “that sounds like what I would expect”). He then reiterated his previous sentiment: the sooner that Kelsey could get the tumor out of her calf, the better (as larger masses of cancer do no respond as quickly to these treatments and can be hard on your body to clear out once they start to die). He then prayed with her before she headed back to Norman.

Kelsey had heard back from Dr. Lin’s office and had told them what we had heard from Dr. Benjamin. The nurse then said she would contact Dr. Benjamin’s office and we haven’t heard anything more from them. So, after the appointment in Tulsa, as she was driving back to Norman, Kelsey called Dr. Smith (the orthopedic oncologist her in Oklahoma City who did her first biopsy) and she will be doing the surgery on Kelsey’s leg this coming week.

Here is the schedule (so far), for the week:

-- Tuesday: 6:30 MRI, followed by a pre-surgery consultation with Dr. Smith and perhaps a bone-strengthening shot.
-- Wednesday: 6:00 check-in, surgery at 8:30.

She may head up to Tulsa on Monday to get another infusion, but won’t know for sure until Monday morning. We will learn more about projected recovery time after Tuesday when Kelsey meets with Dr. Smith.

It has been a bit of a whirlwind, but as the dust settles, we still have not heard back from Dr. Brown. Kelsey would be the most comfortable with him doing treatment, but it is a pretty lengthy process (there is a week needed between the simulation appointment – where the body restraint is set up and the simulations are done – to when the actual treatment can be). Typically, the simulation comes after a meeting with Dr. Brown, so definitely, longer than a week for the entire process. There is also time to wait for insurance approval (which could add even more time). If we do not hear something soon, Kelsey may choose to pursue treatment here in Oklahoma City.

Prayer requests:

-- Pain. Continues to plague Kelsey. Pray with the amount of lying down which will come with the MRI on Tuesday and surgery on Wednesday, her back pain will not be unbearable.

-- A clean removal of the tumor in her right calf. Pray no traces are left behind and the anatomy of her leg does not suffer a huge adverse impact. Pray for wisdom for Dr. Smith as she looks at the MRI and then as she does the surgery. Pray for a speedy recovery.

-- No more spread of cancer.

-- Healing. God’s power is so much greater than man’s wisdom and so far beyond our understanding. He can heal and we ask that He does!

-- A response from Dr. Brown. Hearing from Dr. Brown will help to clarify our next steps. If he cannot get her in until her appointment at the end of May, we’ll likely pursue treatment her in OKC. If he can get her in quickly, we’d probably be heading back down to Houston.

-- Wisdom. There are decisions still remaining about treatment. Pray God clearly directs us to the best treatment option. Pray we will trust Him in His direction.

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, clichéd 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?

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.

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.

An update–plain & simple

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.










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


The azaleas were in full bloom and just amazing!!


Alexa Hope modeling the azalea she picked.

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.

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.

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.

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.

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.


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.

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

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.

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


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.




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.




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.

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?


(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.