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Friday, May 31, 2013

Quick update

This is a very quick update before heading to bed. Several praises:
-- Kelsey is a good candidate for stereotactic radiation on her C7 vertebrae.
-- Dr. Brown and his staff were a pleasure to work with today and were very helpful in answering our questions.
-- We had an appointment already scheduled for the necessary pre-treatment imaging and simulation (it will be at 3:00 tomorrow and last approximately 2 hours), so there will be no wait on scheduling.

More to come when we are less sleepy, but it was an encouraging visit (also sobering to know that the actual treatment will be starting quite soon). Thanks as always for your prayers! We'll have more specifics soon. We just wanted to keep our prayer warriors informed!

Wednesday, May 29, 2013

Our return to MD Anderson

Here is quick update from yesterday's trip to MD Anderson. Kelsey did a great job with her C-spine MRI. They were running a bit behind when we checked in, but we were still able to meet with Dr. Benjamin after the scan (we actually started talking with him around 7:15).  We don't really have a whole lot of new information, but we were able to have several questions answered about Kelsey's upcoming treatment plan. If all goes according to plan (and God does mighty things), the course to eradicate her cancer will include targeted radiation to her C7 vertebrae, chemotherapy and surgery to remove the primary tumor in her right forearm. Dr. Benjamin mentioned the possibility of radiation on her forearm prior to surgery as well as a second round of chemotherapy after surgery. He reminded us once again, this is a nasty tumor and nothing has been developed to specifically target this type of tumor. Dr. Benjamin was able to review the MRI images from Kelsey's full spine and feels confident the only area of her spine needing treatment is her C7 vertebrae, which is a praise! Kelsey felt more comfortable with Dr. Benjamin this visit. He even gave her a big hug after the appointment.

Tomorrow will be our meeting with Dr. Brown to determine whether Kelsey is a good candidate for stereotactic spine radiation. Dr. Benjamin said he definitely knows his stuff and will be able to make that call. Dr. Benjamin was encouraged to see the cancer is contained entirely in her C7 vertebrae and is not close to her spinal cord. We hope tomorrow will provide more answers and direction for Kelsey's first round of treatment. If she is a good candidate, Kelsey will go in Friday for pre-treatment imaging. We've been told we'll know a bit more tomorrow about the timeline (when treatment would start, how long to wait between that treatment and the start of chemotherapy).

Prayer requests:
-- Kelsey would be a good candidate for stereotactic radiation treatment and it would be effective in killing the cancer in her C7 vertebrae with no side effects.
-- Pain management. The tumor on Kelsey's arm has grown and is becoming more painful (especially at night). She is not supposed to take over the counter pain medication during any of her cancer treatment and is not too excited about the possibility of taking narcotics for several months.
-- For Kelsey to be in the best physical, mental and spiritual state possible going into this battle.
-- For wisdom in how to make life as normal as possible for Alexa - routine, discipline, expectations, etc. She has been a bit of a handful at times over the last few days.
-- For healing - miraculous or through medicine.

As we have said before, we are so grateful for your prayers and support in this time. It makes the journey so much easier knowing that we have a wonderful prayer team interceding for us each and every day. There are still many unknowns, but one thing we know for sure is that we serve a God who is completely in control and is not surprised by any of the twists and turns we have encountered over the past months.

Sunday, May 26, 2013

A small detail

“Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”  Lamentations 3:21-23

I just wanted to include a small detail which escaped me when I posted yesterday’s blog. Once again, a reminder of the Lord’s faithfulness.

Earlier this week, I mentioned my concern and discouragement when Dr. Benjamin’s nurse told me he would be out of the office from May 17 through sometime the week of June 3. You were probably surprised to read in yesterday’s post I was meeting with him on Tuesday, May 28. Well, Dr. Benjamin happens to be in the office that day and only that day during his extended absence. So, you can imagine the whoopin’ & hollerin’ I exhibited when Benjamin’s PA told me he was willing to meet with me around 6 or 6:30pm following my MRI that day. Once again, God’s faithfulness in the littlest detail (or a major concern in my books). Thank you Lord!

Lil’ A admiring her beautiful flowers (notice her pollen-covered nose) . . .

IMG_8920 IMG_8908


Saturday, May 25, 2013

The ball is rolling!

Several of you have contacted me to see how things were going this week. I have desperately wanted to send an update but was reluctant that any news would be potentially more confusing than helpful. Heck, there were a few times this week I couldn’t keep the facts straight because I received different facts from different people. Yes . . . I had some pull-your-hair-out moments this week (but then I thought, “No, don’t do that. Your hair is precious . . . just scream or something”).

Really though, the Lord seems to be hammering one lesson home continually throughout this “unexpected journey” – keep trusting Me. Keep trusting Me when things don’t make sense. Keep trusting Me when you have to wait. Keep trusting Me when you don’t have clear answers. Keep trusting Me when you are afraid. Keep trusting Me when hope is deferred. Keep trusting Me – trust Me for My plan. Trust Me for your future. Trust Me in this moment.

One such moment was after Chris and I decided (after much prayer) to go with the doctor at MDA recommended by Dr. Benjamin for my radiosurgery. We felt assurance this was the clear path, but when I found out the doctor was no longer accepting patients because he was moving, I began to doubt our decision. Especially when the doctor the radiation nurse suggested did not have as much experience doing this particular radiosurgery procedure and the other doctor she mentioned wasn’t available until June 3. It meant more waiting and the thought we should consider the doctor here. Add to this the fact we would probably be making at least three trips to Houston over a span of three weeks (for a consult, pre-treatment imaging & treatment), and my heart started racing thinking, “When will we get an appointment? Who will do this procedure? When can we start this process? Is my cancer spreading while we wait?”

The Lord gave me this sweet devotional from Jesus Calling the day this happened . . .

When things don’t go as you would like, accept the situation immediately. If you indulge in feelings of regret, they can easily spill over the line into resentment. Remember that I am sovereign over your circumstances, and humble yourself under My mighty hand. Rejoice in what I am doing in your life, even though it is beyond your understanding.

I am the Way, the Truth, and the Life. In Me you have everything you need, both for this life and for the life yet to come. Don’t let the impact of the world shatter your thinking or draw you away from focusing on Me. The ultimate challenge is to keep fixing your eyes on Me, no matter what is going on around you. When I am central in your thinking, you are able to view circumstances from My perspective.

So . . . you see the common theme? Trust. I was still struggling with it this morning when I woke up. And even though I surrendered the day to Him, I seemed to pick my agenda right back up along with my phone to try to get answers. After leaving a few voice messages, I had to surrender again. Ironically (and I can say this rarely happens), my phone started ringing with answers – a game plan to begin my treatment. On the fifth day of not knowing the start of the game plan, the four initial pieces to make radiosurgery a reality were all falling into place. What is even more miraculous, they were falling into place in one trip! I had pushed for this, but due to my weak faith and a very full schedule at MDA, I didn’t expect it.

So, this is my schedule for next week at MD Anderson . . .
-- Tuesday, May 28: MRI of C-spine (4:15pm), appointment with Dr. Benjamin (6pm)
-- Thursday, May 30: Consultation with my radiosurgeon, Dr. Brown (1pm)
-- Friday, May 31: Pre-treatment imaging (late afternoon)
-- 5-7 business days following: stereotactic spine radiation begins (not entirely sure, but we think 3-5 days for treatment)

Prayer and praise:
-- A big hug and heart of thanksgiving to all of my prayer warriors who continually take these requests to the throne in full confidence the Lord will answer . . . He is!
-- Thank you for your continual encouragement through cards, texts and messages. They carry me through difficult weeks and will continue to do so.
-- The radiosurgery is contingent upon my being a good candidate for treatment (which will be determined by my radiosurgeon and my C-spine MRI). Pray I will fit the ticket and it will be effective.
-- For logistics to come together as we prep to leave for a week.
-- For clear communication with & confidence in Dr. Benjamin & my treatment plan
-- For continued healing of my body – specifically my upper and lower back pain. It has been intense and discouraging at times this week.
-- Healthy weight and muscle gain.
-- For complete healing (be it miraculous or through medicine).

But enough about me, we celebrated the birth of our third goddaughter on May 23 – Lucy Kathleen. Here she is with my dear friend and her proud mama, Kelly, as well as her big sisters, Liberty & Eva:



I am a proud mama too! Here’s my girl. Can you imagine these four girls in a few years!?!

Monday, May 20, 2013

New developments

We want to let everyone know, we are safe, as well as my sister's family and her in-laws (Carl & Sharon). Our hearts are certainly heavy with the news in Oklahoma today. We now understand  firsthand what it is like to walk through something unexpected knowing your life will never be the same. As we watched the coverage of the destruction and saw the devastated looks on the survivors' faces it brought tears to our eyes. All we knew to do was pray for those precious families the same way you have been lifting us up. We have included some photos below of the destruction very near Carl and Sharon's home.

Before Oklahoma became a hotbed of national attention, we had some encouraging developments in my treatment plan and I can gratefully report several folks from MD Anderson are providing help and direction. I am so thankful for those who have advocated on my behalf at MDA and for all of you, my faithful prayer warriors. Dr. Benjamin communicated with my OKC oncologist. My diagnosis was confirmed and my treatment plan set in place (a significant change from the previous post). From what I understand, I will begin treatment before I see Dr. Benjamin again.
-- Dr. Benjamin recommends radiosurgery (a targeted radiation treatment) on my C7 vertebrae first. I can do this treatment in OKC or in Houston, it is my decision. From what I understand, treatment could last one to two weeks with one treatment per day.
--Following radiation recovery (2-4 weeks), I will be doing a less intense, outpatient chemotherapy in OKC. Although details are vague, I think each round is three weeks. If I tolerate it well and it is effective, Dr. Benjamin's PA said I may undergo six rounds (eighteen weeks).
-- There wasn't much discussion beyond that but I assume the next step will be surgery to remove the primary tumor in my right forearm.
-- I am sure there will be more steps, possibly treatment, but I pray a thanksgiving celebration will be the final step because I will be clean. You will all be invited and we will p-a-r-t-a-y, giving all glory to God!
Please lift up the following:
-- Survivors of the devastation in Newcastle & Moore as well as ongoing recovery & rebuilding efforts.
-- Wisdom in making a quick decision about whether to do my radiosurgery in OKC or Houston.
-- The treatment plan set forth will be effective in eradicating my cancer.
-- My body would be able to tolerate each treatment successfully, and I would have God-sized strength, endurance and trust in Him during the treatments.
-- For healthy weight & muscle gain in the downtime. My back continues to ache. I start to worry why. Pray it subsides.
-- For the cancer to shrink and not spread in the waiting.

Catching up

“The Lord gives strength to His people; the Lord blesses His people with peace.”  Psalm 29:11


We apologize for a quiet week on the blog, but in some respects, that is probably a good deal. Alexa and I spent the first part of the week in Dallas with my parents, so I could focus on getting some rest, building my strength and gaining more weight. I have to admit, it was a blessing to get away from all of the reminders of my reality. I enjoyed some HGTV, opportunities to sleep in and was blessed to hang out and pray with a dear sister who has walked my road victoriously. What an encouragement you were to my heart, Melinda! I also felt the best physically that I have since this all began at the end of March. If my back weren’t hurting, and my right hand didn’t look like a claw, you would have a difficult time convincing me I have the “C” word.

The week wasn’t all R&R, both Chris and I (okay, let’s be honest, really Chris) spent several hours on the phone trying to get the final pieces to MD Anderson. The end result … more frustration and confusion about how things work there. Hopefully Chris will be connected with the right person today and we can ensure my final biopsy slides (C7 vertebrae) will arrive at MDA this week. I also found out my MDA doctor will be out of the office until June 3. This was a bit disheartening as we were told we could not meet with another MD doc to discuss my diagnosis/treatment plan until his return. When I initially read this news from his nurse, I was very upset. But, the Holy Spirit reminded me God is still in control even if I feel like this is a huge setback. He is not surprised by this waiting, rather He is sovereign in it. This brought peace to my heart and helped me to focus on the positives of this “waiting.” I can continue building my endurance and gaining weight before chemo treatments begin. I can also focus on my new diet (more on that later). It also allows me some time to feel a bit normal before the real fight starts.

We headed home for an appointment with my OKC oncologist on Friday morning. It was an encouraging appointment as Dr. Keefer is definitely my advocate and wants to work with my MDA doc to get a treatment plan in place as soon as possible. Although the diagnosis is not solidified, the treatment plan will probably look something like this . . .

-- 2-3 rounds of intensive chemotherapy (I will receive chemotherapy in the hospital for 4-5 days each round). I will go home for approximately 3 weeks to recover, retest and see if I am ready for the next round and chemo was effective.
-- Surgery to remove my primary tumor and possibly radiation around the site.
-- Targeted radiation on my spine.
-- My prayer is that I will be clean at that point, but they may want to do an additional 2-3 rounds of chemo after that.

So that is what we know at this point. More waiting. More trusting. As we have enjoyed some crazy Oklahoma thunderstorms these past couple days, I have been encouraged by the magnificent displays of God’s power. This same God is the One to whom we are praying for healing. He can do this. I think He wanted to remind me of that in the face of not-so-promising statistics.

Prayer requests:
-- God would heal the pain in my upper and lower back.
-- God would continue to orchestrate all the details of the treatment plan.
-- I would be disciplined in getting rest, building endurance and gaining weight.
-- The missing pieces to come together at MD Anderson for a proper diagnosis.
-- Wisdom for the doctors as they devise an effective treatment plan.
-- God’s continued healing of my body. No more cancer spreading!

Tuesday, May 14, 2013

A Mother's Prayer

We don't typically wear t-shirts and go without make-up for a Mother's Day pose but this wasn't a typical Mother's Day - at least not in my books. The silver lining was that I got to spend this special day with five of my favorite people and that made it more bearable. To know my Mother's Day would not be spent at church worshipping the Lord and celebrating my mother but rather spent in an MRI for two hours investigating my spine and several more hours in a car traveling home without any more answers definitely put a damper on the day. However, I'm willing to go through one gloomy Mother's Day in order to live out several more - healthy and strong.

I can't lie, I held back tears several times on the drive to MD Anderson Sunday being reminded of this bad dream from which I can't awaken. There are times I still can't believe all of this is really happening. (Fair warning - I'll probably say that several more times in the months to come). Regardless, that is how my family spent Mother's Day, and I am utterly grateful we were together no matter the location.

For several years, Mother's Day has been a difficult day for me. I've lost two precious little ones, struggle with infertility and continue to have a deep longing for more children. Again, this Mother's Day was another reminder the dream of children is only that (a dream) in light of the new battle I'm facing. On the other hand, my "unexpected journey" has shed new light on what I already knew. Alexa Hope is a precious gift and miracle from our Father. She is even more so now that the docs are confident I've had this tumor since 2008. She was and still is "Our Hope Fulfilled," and if you've read our blog for any amount of time, you will realize I don't take her life for granted . . . I cherish it. Even in the trenches of shepherding our little whipper-snapper's heart, I thank God for the opportunity He's given me to be called "Mama," to sing hymns with my little girl, and to watch her joyfully live life. Her smile still gets to me. Being a mommy is my highest privilege and delight. It is the driving force for me to fight this vile thing within me like a lion. My boxing gloves are on.

In light of all of that has transpired the past six weeks, I feel this song expresses the longings of my heart for my precious "Hope Fulfilled." I know not what the future holds, but my prayer is it will include many, many more years with my knight (Chris) watching our daughter grow into the child of promise the Lord has often whispered to my heart she is. As her life verse states, "May the God of hope fill Alexa will all joy and peace as she trusts in Him, so she may overflow with hope by the power of the Holy Spirit." Romans 15:13

Alexa Hope, this is my prayer for you . . .

**Thank you Laura for introducing me to the Gettys.

Mom - My Caretaker
I would be remiss if I didn't honor my mother who has definitely fulfilled that role in every facet over the past month. Upon the news I might have cancer, my mother and father were headed to Norman prepared to do everything in a parent's power to make the diagnosis easier. Since then, my mother has been my nurse and prayer warrior - constantly by my side, devouring every book about cancer, nutrition and healing, and doing her very best to fatten me up while starving the cancer cells (thanks to a Vitamix, Ninja & juicer). She fulfilled this role 14 years prior when I had a serious jaw surgery. She laid by my side keeping ice packs in constant rotation and prepared the most fattening, delicious shakes to prevent major weight loss. When I had my post-op appt with the doc, they couldn't believe I was only 14 days out of surgery. I have to admit, I did look pretty incredible in light of what they did to my face. I have a sneaking suspicion this cancer has another battle to fight with my mom by my side. She won't give it a chance to thrive. And my prayer is that every scan the docs do, they will be amazed by the cancer's limited ability to live in my body. Perhaps they didn't calculate prayer and a mother's love into the chemotherapy treatment. That is my prayer and I hope it is yours as well. A simple thank you doesn't seem adequate to express my gratitude for what you have always meant to me, Mom, especially now. I love you!

Hol - My Advocate
Thank you for giving up Mother's Day with your incredible children and hubby to spend it by my side. In fact, thank you for all of the activities you've sacrificed with your children to be at my appointments, my surgeries, to watch Alexa or to do my laundry when I felt so incapable. You are my advocate, my researcher and my fighter especially when I don't have much fight in me.  If it weren't for you, I never would've gotten into Dr. Smith and where would we be then? You are the level-headed one making sense of things when I am emotional. I feel stronger when you are beside me because you have always exemplified strength to me. I am confident I will fight harder because you are there pushing me and believing in me. Plus, I really enjoy watching you eat all of these veggies mom is making me eat, so you make me smile quite a bit too. Just remember, I'm still looking up to you. Thank you for never tarnishing the role of "big sis." Once my role model - always my role model. I love you!

Saturday, May 11, 2013

Going home

Thus far, our experience with MD Anderson has been … frustrating. We know from the testimonies of so many it is an amazing place for healing and that is why we are here. However, we are discovering getting to a treatment plan may be a more lengthy process than we hoped. We maintain MD Anderson has the most experience treating sarcoma – again that is why we are here. But it is still a paradigm shift from the personalized and expedited care we received in Oklahoma City.

We have had a lot of difficulty communicating with Dr. Benjamin’s nurse, who is the only direct point of contact within his staff. When we do talk with her, she rarely has the answers we need or even listens to our questions. Long story short, we found out yesterday we will not know the results of my pathology until late next week at best. This means it is very unlikely I will have an appointment with Dr. Benjamin next week to discuss a treatment plan. I also found out he will be gone (not for sure of the start date) until early June. So, I may not have a treatment plan for another four weeks. To add to this, they scheduled my MRI at 8:15am on Mother’s Day. So, the one thing communicated to us yesterday by the nurse was that we can go home tomorrow instead of waiting around in Houston for another week with no answers.

I am frustrated because there is no closure. We came to Houston anticipating a treatment plan because of the four weeks of extensive preparation and testing in Oklahoma. We provided (in advance) every lab, operative, pathology and clinic report, every film and scan. We came with a diagnosis. We were in search of a second opinion to feel confident with our plan of attack. And now, we are heading back home with no more answers.

You have to understand, I live every moment of every day knowing I have poison not only in my right forearm, not only in my vertebrae, but perhaps throughout my body (in microscopic traces). I wanted it out the moment I first heard on April 12 that it was in my body. Regardless, I know chemo will be the first step.  Although I’m not excited about that, I am ready to lose my hair in order to kill the poison. . . and this is where my frustration lies. I feel as if we are so close to a treatment plan, and yet so far away. The news yesterday was another hope deferred – something that is becoming all too familiar in this unexpected journey. I will let Chris provide specific prayer requests. But in broad terms, my prayer is that my hope will remain in Him and not in man.

I am very thankful for my dear friend, Melinda, who has walked this path more than once. She reminded me yesterday, that although I may feel like a number at MD Anderson, I can rest assured the Creator of the universe knows the number of hairs on my head (which, ironically will be very few in the months to come). I have to rest in the Truth He knows me. None of these interruptions are a surprise to Him. He is the one thing we can hold to right now.

“The Lord is good, a refuge in times of trouble. He cares for those who trust in him.”  Nahum 1:7

Specific prayers:
-- Pray for God’s continued healing of Kelsey’s body in this time of waiting.
-- Praise God for His provision through friends and divine appointments.
-- Romans 12:12 – “Be joyful in hope, patient in affliction, faithful in prayer.”
-- Pray for clear communication with Dr. Benjamin’s staff in the days to come so we will know when we need to return to Houston and that it will be soon.
-- We are thankful for a great night of sleep last night, a day without any appointments and beautiful weather.
-- Pray for safety as we travel home. Also pray Kelsey’s back would not be so sore on this trip.



Friday, May 10, 2013

And ... more waiting

“Wait for the Lord; be strong and take heart and wait for the Lord.”  Psalm 27:14

In what seems like a common theme these days, we are still in a holding pattern. We registered at MD Anderson and met two very sweet “six degrees of separation” connections (they both work at MD Anderson and have connections with friends of our family) while we waited to get in to our appointment. This was an unexpected blessing and encouragement. Thanks for your warmth and smiles, Hettie and Katy. We discussed Kelsey’s medical history with Dr. Benjamin’s PA and then waited to see Dr. Benjamin.

Dr. Benjamin arrived and we had a brief discussion with him, which led to the conclusion they really want to do pathology on Kelsey’s biopsies at their in-house lab, which means the pathological slides have to be shipped to MD Anderson and then tested again – more waiting. Dr. Benjamin wants to be confident he knows the exact strain of cancer before recommending a treatment path. He explained that Kelsey’s specific tumor is misdiagnosed forty percent of the time. He also ordered an MRI of Kelsey’s full spine because he believes it offers the best indication of potential tumors in her vertebrae. I guess our prayers were answered, that is new test and not one that has to be redone. Since we left his office at 6:18, the MRI has not been scheduled – more waiting. After the MRI, we’ll figure out if we want to stay down here in Houston, go to Kelsey’s parents’ place in Dallas, or head back home to Norman while we wait for the biopsies to arrive and the pathology lab to make a diagnosis.

** Kelsey here. I don’t have much to say about today, except MD Anderson is a place you don’t ever want to go. I don’t mean it is not a great place for healing, but it isn’t a resort (which is where I would much rather be), it is a place where sick people go to get better. A gal who had been treated there warned me it is a very difficult place to be. I concur. It was very hard for me to see so many people so sick and know that I have the same disease they do. Yuck! In the sarcoma center waiting room, you couldn’t help but notice a common theme – amputation. Please pray for my heart as it felt attacked and discouraged by this visit. Please pray I will feel more of a connection with the doctors here as well – I felt a bit like a number today.

Prayer requests:
-- Pray for healing.
-- More details. We discovered the pathological slides needed by MD Anderson pathology are in two locations: Mercy and Emory Medical Center. Pray that God will allow us to talk with the right folks at both locations, they will understand what is needed, send out the tissue tomorrow and MD Anderson will have it first thing next week. Pray it gets into the right hands in the pathology lab. Pray that everything goes well in transit (we don’t want any more biopsies).
-- Pray for wisdom in deciding where we should stay in the waiting period.
-- Pray for our hearts as we wait.

Thursday, May 9, 2013

We’re here!

Well, it is officially May 9 and Houston is the last place I thought I would be. Regardless, my family and I arrived in Houston this evening and thanks to some very gracious and generous friends, everyone is asleep in a bed of their own in this beautiful home (thank you so much Kevin and Kari and all of the others who pitched in to set us up like royalty).

The last two days have been a whirlwind and the reality I am going to MD Anderson because I have a rare cancer is finally hitting me. I still have eight pages of medical history to fill out before my appointment in a few hours. Although I am typically last minute, I purposely left these pages blank because I still have difficulty accepting I am the reason we are here.

With that being said, I am grateful for the opportunity to go to MD Anderson and meet the brightest minds to help in my fight to destroy this cancer. Several of you have asked about our schedule tomorrow. We need to be on the MD Anderson campus at 1pm for admission, and then at 2pm, we will meet with Dr. Benjamin, the head of the sarcoma division. Several people have told us a wait is to be expected to meet with him, so we really don’t know what to anticipate tomorrow or in the days to come. Our itinerary told us to expect to stay five to seven business days.

Several verses have been swimming through my head on our drive south. Thank you for sharing so many encouraging reminders of God’s truth through cards, Facebook messages, texts and comments on this blog. No doubt, these truths will sustain me in the journey ahead. As I was reading my devotional from Jesus Calling, one specific scripture spoke to me in light of my upcoming appointment:

“For I am the Lord your God who takes hold of your right hand and says to you, ‘Do not fear; I will help you.’”  Isaiah 41:13

This verse speaks to me because it reminds me Who is in control and the One who is in control commands me not to fear. I especially love it because He takes hold of my right hand, which is exactly the one I need healed. I know regardless of what they say tomorrow, regardless of if my hand ever works again, regardless of if I lose my hair, He is the one who will be with me every step of the way. He will be my helper, He will be my strength. And, He WILL be my healer.

I am ready to fight. Now it is time for a game plan. So many of you have expressed you are ready to fight alongside me as well and for that I am grateful. I can honestly say, I have felt tremendous peace over the past several days, that can only be attributed to your many prayers for my heart, my diagnosis and my family.

Specific prayer requests:
-- Pray for my lower back pain and healing of my body from the previous three biopsies.
-- Pray Alexa will do well with an unexpected schedule for the next several days. With such a fun place to stay, we are pretty sure she won’t want to go back home.
-- Pray that the appointment with Dr. Benjamin goes well and that we would be teamed up with the perfect doctors to tackle my diagnosis and treatment plan.
-- It would be a huge blessing if I did not have to redo lengthy scans with more radiation exposure.
-- It is currently 1:30, so please pray for rest for all of my family (most of them don’t have the benefit of hydrocodone).
-- Pray for wisdom and understanding to catch all of the information which will be thrown our way.
-- Pray we will walk away encouraged and enthusiastic about the game plan (and that we will have a clear one when we leave).
-- We won’t stop asking for a miracle. I honestly feel at times the tumor is shrinking in my right forearm. I am going to continue believing that is the case.

Monday, May 6, 2013

A quick update

I know many of you are following the blog for updates, so I wanted to pass along a quick one. I just spoke with Dr. Smith and Dr. Wienecke. They said everything went well as far as the surgery - no complications there. Dr. Smith said the concerning area in her C7 vertebrae is clearly cancerous and her gut feeling tells her it is the same stuff in as in her forearm (but those pathology results won't be back for a couple of days). My heart hurts for Kelsey - we so appreciate your ongoing prayers as this news will make the journey much lengthier and more involved (we still know that her complete healing is still not out of the question).

Biopsy number three

As we prepare for biopsy number three, Psalm 86 continues to be our prayer:

Hear me, Lord, and answer me,
    for I am poor and needy.
Guard my life, for I am faithful to you;
    save your servant who trusts in you.
You are my God; have mercy on me, Lord,
    for I call to you all day long.
Bring joy to your servant, Lord,
    for I put my trust in you.
You, Lord, are forgiving and good,
    abounding in love to all who call to you.
Hear my prayer, Lord;
    listen to my cry for mercy.
When I am in distress, I call to you,
    because you answer me.
Among the gods there is none like you, Lord;
    no deeds can compare with yours.
All the nations you have made
    will come and worship before you, Lord;
    they will bring glory to your name.
For you are great and do marvelous deeds;
    you alone are God.
Teach me your way, Lord,
    that I may rely on your faithfulness;
give me an undivided heart,
    that I may fear your name.
I will praise you, Lord my God, with all my heart;
    I will glorify your name forever.
For great is your love toward me;
    you have delivered me from the depths,
    from the realm of the dead.
Arrogant foes are attacking me, O God;
    ruthless people are trying to kill me—
    they have no regard for you.
But you, Lord, are a compassionate and gracious God,
    slow to anger, abounding in love and faithfulness.
Turn to me and have mercy on me;
    show your strength in behalf of your servant;
save me, because I serve you
    just as my mother did.
Give me a sign of your goodness,
    that my enemies may see it and be put to shame,
    for you, Lord, have helped me and comforted me.

This song has been an encouraging reminder to place my faith in the Great Physician: You Are Able - Christy Nockels.

Saturday, May 4, 2013

A Surprising Friday

“Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He shall direct your paths.” Proverbs 3:5-6

This week was a rough one. Let’s face it . . . this month has been a rough one. However, I knew this week would be extra stressful due to the nature of the appointments. There were days I woke up in sadness – still in disbelief this is my life. Sobbing in the shower because the only reason I was getting clean was to spend the day in a hospital undergoing tests and discussing my “condition.” The crying continued as I would do my best to get ready one-handed and then have to explain to my precious daughter why I have to leave her . . . again . . . and that I will do my best to be home when she wakes up from her nap (and let’s be honest, I never got home that early). Leaving to her cries of “Mommy hold me. I want you!” More sadness.

Yep, this week won’t rank in the top ten of my life – not even close. I was very excited that Friday’s agenda was empty. No tests. No appointments. No trips to Mercy. No more hard news. That all changed when my phone woke me up. I am learning to answer unidentified numbers because they are always important. It was the neurosurgeon’s office (Dr. Wienecke). He wanted to see me Friday afternoon at 1:30pm. More crying. So, I got dressed. Kissed my sweet girl good-bye. Then mom & I headed to Mercy.

Don’t get me wrong. I am thankful for all of the tests, brilliants docs and technology providing a more clear diagnosis. I am thankful for all of the docs getting me in so quickly. I was just weary.

However, the Lord knew this and He spoke to me in such a special way yesterday. We made it to the appointment and met Dr. Wienecke. He’s another amazing doc who said he felt like he knew me due to his conversations with Dr. Smith (my amazing orthopedic oncologist). As we discussed the upcoming biopsy on my C7 vertebrae, I interrupted him and said, “I have an appointment at MD Anderson next Thursday, is there any possible way we could do the biopsy, have the pathology results and I could be fit to travel by then?” Anyone in their right mind would know that one of the top neurosurgeons in the state couldn’t fit me in that quickly. But that wouldn’t be factoring God into the equation. Dr. Wienecke paused and said, “I think we can do it Monday, I just need to check with my scheduler and make sure Dr. Smith will be there as well.” He left the room and about five minutes later I had a surgery scheduled for Monday morning at 8:30 with two incredibly skilled surgeons. The procedure will involve going in through a small incision on the front of my neck, bypassing a few important arteries, removing a sample of the questionable tissue from my C7 vertebrae and possibly filling it in with bone cement. The two docs will tag team on this procedure. I will be required to stay overnight so they can monitor my recovery. But enough about the procedure. I get nervous thinking about it.

I was overwhelmed by God’s specific and timely answer to all of our prayers – including yours. After checking out, I was whisked away to the hospital for pre-op tests, including blood work, an EKG and a chest x-ray. I am not looking forward to another surgery, but I am thankful that God has provided the opportunity to address the missing piece of this equation before we head to MD Anderson. I can’t emphasize how huge this is! By no merit of our own, God has given us tremendous favor with the best cancer minds in the state, and very soon, in the nation.

I have joked with a couple of you, it doesn’t seem God is answering our prayer for miraculous healing, but He is answering our prayer for healing through medicine. (I’m not giving up on the miraculous healing, so you don’t either). Although it has been the longest month of my life, I realize things could have been much less efficient without God’s hand in this matter. He has done marvelous things.

Thank you again for being the most incredible prayer team in the world! I wouldn’t be writing this blog without you. Even in the dark moments, I know He has a plan for my good and His glory. Thank you for being a part of that. I need you and I need Him!

Specific prayer requests:
-- Pray for a successful biopsy and a speedy, complication-free recovery.
-- Continue praying the results of the biopsy will be clean and that the cancer is contained only in my right forearm.
-- Pray for preparation as we head to MD Anderson. There are lots of logistics we need to work out – including laundry. Ha!

Thursday, May 2, 2013

The next step

Our meeting with Dr. Smith today was weighty, however it did provide more direction for the future. She said the bone scan did corroborate with the PET scan, there is a disturbing spot on the front side of Kelsey's C7 vertebrae. Looking at the scan, there was a small area on her vertebrae which according to Dr. Smith looks like what a sarcoma would do when it gets into a bone - looking a bit like a rat gnawed on it. She said this isn't the typical path this type of tumor takes (with nothing showing in the lymph system or lungs). However, she reminded us this is a nasty and very rare tumor. She suggested our first step be a biopsy of the vertebrae. That determination will guide the rest of Kelsey's treatment and determine the stage of her cancer. We learned the reason a core needle biopsy is not an option is the nerves and arteries that are right around that area - there wouldn't be a way to get the needle in without some serious risks. So, the surgery will be done by a neurosurgeon whom Dr. Smith really respects, Dr. Wieneke. If the results come back as more cancer, Kelsey would do two rounds of high dosage chemotherapy in order to eradicate any microscopic areas of cancer not revealed on the PET scan. All of this would take place before surgery to address the primary tumor in her right forearm. If not, then the surgery would be first and chemo could be an option after the surgery.

In the midst of weighty news, we were encouraged by some answered prayers. The chest scan Kelsey had today was clear, according to Dr. Smith. Once we left the appointment, Kelsey noticed she had a missed call with news she was able to get an appointment with Dr. Robert Benjamin, the head of the Sarcoma Center at MD Anderson, next Thursday, May 9. We have been told the initial steps will not be different, but it will be good to potentially have someone who has seen more cases of this specific type of cancer. That is a huge answer to prayer, as Dr. Smith reiterated several times in our conversation today to expect to wait at least 21 days to get in. With the connection Dr. Keefer had with Dr. Benjamin (and many prayers), our wait is only seven more days. We are so grateful for all of the prayers offered up on our behalf. We are especially thankful when God allows us to see His faithfulness through answered prayers. Please keep them coming!

Specific ways to pray:
-- Pray Kelsey would be able to get in for the biopsy very soon, if possible, before her appointment at MD Anderson. It sounds like the neurosurgeon, Dr. Wieneke, has a pretty full schedule. But that hasn't stopped us from getting appointments before with God's help.
-- Continue to pray this suspicious area on her vertebrae is not cancer. Dr. Smith didn't seem to have a whole lot of other ideas of what it could be, but again, continue praying for miracles.
-- Continue to pray God would hinder growth of the primary tumor in her arm and the cancer would not spread.
-- Pray for reduction of the pain in biopsy areas as well as her neck and lower back.
-- In this time of waiting and healing, pray Kelsey would be able to build up her strength and endurance as well as gain more weight to be able to fight this cancer and beat it.
-- We appreciate continued prayers for wisdom and direction.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."  John 16:33

Wednesday, May 1, 2013

Knowing in part

“For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.”
-- 1 Corinthians 13:12

Chris here. We met with Dr. Keefer today. He was a very kind man – he spent almost an hour talking with Kelsey about her journey to this point and discussing potential treatment options. He was at the tumor board where Dr. Smith presented today, so he said, “I feel like I already know you.” They looked over the results and the big question mark is whether or not there is some sort of a tumor in her C7 vertebrae. The bone scan results were much as we had prayed – they did not lead to a conclusive answer about the spot in her vertebrae being a tumor. However, treatment alternatives really hinge upon whether or not the cancer has spread. Dr. Keefer shared some of the alternatives and also said he was glad to hear we had begun the process of getting in to MD Anderson. His thought was the more people who can look at what is going on, the better.

So, while we left from the appointment still feeling very much like we “know in part,” God also provided in some neat ways:
-- Dr. Keefer did not believe the bone scan showed it is a cancerous mass.
-- Dr. Keefer knows the head of the Sarcoma Department at MD Anderson and emailed him tonight to refer Kelsey to their treatment center and give some background. He believes we may be able to get in next week.
-- Dr. Keefer wanted to schedule a chest scan to make sure her lungs are clean. Kelsey was the last patient in his office, but the staff got her scan approved and scheduled for tomorrow at 1:15 (which is perfect since we will be at Mercy for her appointment with Dr. Smith).
-- Even walking out, Dr. Keefer’s nurse was very willing to help with all of the necessary protocol in getting information to MD Anderson – we have been very impressed with the doctors and staff we have worked with at Mercy.

We would appreciate prayers for:
-- A clean chest scan tomorrow.
-- Clear direction and wisdom for both Dr. Smith and us at tomorrow’s appointment.
-- Wisdom in how to determine if the spot on Kelsey’s vertebrae is a tumor or not. We are praying God will remove it, or it is not cancer.
-- Kelsey is dealing with lower back pain and pain from the surgeries. Pray for quick healing and peace in her thoughts. No overanalyzing pain and thinking it is cancer – be it pain in her chest, throat, or lower back.
-- Health protection. Alexa has been sick, pray Kelsey will stay well as health is such an important factor with surgery and treatments looming.
-- Alexa is still having a hard time wrapping her mind around so much adjustment and Mommy being gone a lot. Continue praying for her peace and security.
-- Trusting the Lord with all of the unknowns. All of the doctors have reiterated how rare this tumor is. There is no well-defined treatment path. Pray we would place our hope and trust in the Great Physician.

As we have said many times before, we are so thankful for your prayers. We are thankful the One who fully knows Kelsey is in complete control.