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Wednesday, February 19, 2014

Happy (belated) heart day!!

Just wanted to send ya’ll a little update on our lives and the reason why this blog is late. (We’re currently in California for fun NOT cancer.) We also wanted to recap our day o’ luv and send all of our “warriors” lots of luv too!!

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We started Valentine’s Day with heart waffles and berries. Mommy would have preferred heart-shaped doughnuts but it isn’t on the cancer-fighting diet.

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Then, we enjoyed opening some of our Valentine’s Day cards. One of A’s faves was a “Jake the Never Land Pirate” card where she got to hide several gold doubloons in a treasure chest. Thank you so much for your thoughtfulness, Miss Kathy!

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We enjoyed sending out a few valentine’s day cards of our own. Here’s a sampling. Please don’t be offended if you didn’t receive one. We only sent out a few this year.

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Alexa helped Mommy make heart-shaped sugar cookies to take to Daddy and his co-workers at OU. Alexa had to taste her creations before we distributed them. She was so delighted with her perfectly tinted homemade pink icing.

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A sweet pic of Mommy’s sweetest valentines.

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It was the perfect day to work the heart garb – especially the “blinged” out heart sunglasses. Thank you Auntie Brookelyn!! You always know what an almost four-year-old diva needs.

Alexa enjoyed sharing her Valentine’s Day cookies with Daddy’s co-workers and exclaiming, “Happy Valentine’s Day!” to everyone. I don’t think she minded the attention either. . . . Fast forward to Friday evening. We frantically packed our suitcases and drove (very late) to Dallas to spend the weekend with Mimi & Pop. Then on Sunday morning, we flew to California for a long-anticipated visit with Chris’ parents, grandmother and aunt & uncle. We have wanted to plan a trip in that direction for some time, but we couldn’t make plans until I could make the trip physically and until we knew the direction of my treatment after our last MDA visit. We are learning to live in the moment and take advantage of the good days. So, we are currently in CA enjoying special moments with Chris’ family. I am also enjoying a getaway not requiring a medical wristband. It is a glorious thing, my friends, just glorious!

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To say that Alexa enjoys flying is an understatement. She relishes every moment, and I believe she is more familiar with the ins and outs of airports than most adults. However, after two connecting flights, the excitement wore off. She konked out on my lap. Needless to say, I found the view in my lap far more breathtaking than the views from the coveted window seat.

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Although Alexa earned her first set of wings at three months of age, she thought it was pretty cool to show-off her latest set. (You can barely see the wings just above her right-hand pocket.) She is also proud of the rainbow colored pencil the sweet flight attendant gifted her.

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Alexa giving a shout out to California and loving life with her Ama & Opa.

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I mean, really, who wouldn’t want to be a raccoon!? Just one of the many fun things to play with at Ama & Opa’s.

More fun to come from California!!

PRAYER REQUESTS

-- I have felt better physically the last couple of weeks than I have since my diagnosis in April 2013. This is a huge praise. (I am praying and believing the cancer is dying.) I am so, so grateful to feel somewhat normal again because I honestly never thought I would. It is ridiculous what you take for granted (like turning over, sitting without pain, tying your shoes, fixing your daughter’s hair, cutting produce) until you can’t do them anymore. I pray there will be many, many more days ahead of feeling great and enjoying the things I haven’t been able to in almost a year. I reluctantly share this, because it seems when I give a good report, something awful happens next. Please pray this would not be the case and the Lord would guard my heart from fearing the worst when I should be enjoying the moment.

-- Chris and I are both battling colds. Mine is headed the way of a sinus infection, and as of this morning, I felt the sickness moving to my lungs. Please pray for quick healing and that this sickness would not result in another antibiotic and more issues with my lungs. I am praying God would divinely armor my lungs from any infection or fluid (especially cancer).

-- As of last week, I have officially graduated from hand therapy. At my last measurement, my grip strength had increased to 21 lbs. My therapist considers 25lbs of grip strength a functioning hand. I honestly believe my hand will only increase in strength as I continue “real life” hand therapy. However, I do need to continue working on my range-of-motion and flexibility. My right hand gets incredibly stiff these days. At the moment, I can juggle again. I am also thrilled to begin writing again.

-- We continue to ask the Lord to heal the two herniated discs in my T-spine – especially since Dr. B won’t let me do anything to treat them until my next next MDA visit March 28-31. Currently, this is the only consistent pain I face on a daily basis. The pain is in my right ribcage, sternum and shoulder blade.

-- It is late and my brain is foggy. There is more I could share concerning PRs but I believe the big ones are – death to cancer in my body (forever), total healing in the treated areas, disappearance of the suspicious spots in my calf and T6, continued success of the chemo pill with no harmful side effects and continued moment-by-moment dependence on the ONE who can do the impossible. We are trusting Him to do just that!!

((((( BIG HUGS TO MY PRECIOUS WARRIORS!! )))))

Friday, February 14, 2014

My good man

“I am my beloved’s, and my beloved is mine.” Song of Solomon 6:3

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Indeed, it is Valentine’s Day. A day my husband and I normally laugh a bit about because we don’t appreciate the calendar (or capitalism) telling us this is the day to spat love sonnets to one another. Or better yet, purchase something extravagant that expresses our love. By the way, Chris does this for me throughout the year, so I don’t feel jilted if I don’t get a dozen roses and a box of chocolates on this particular day. Well . . . I might be a bit upset about not getting empty-calories in some form, but I digress . . .

The purpose for this post isn’t to dog Valentine’s Day but rather to tell you about my knight. I have wanted to compose a post about Chris for quite some time. A post providing a glimpse of who he really is because he’ll never tell you himself. It’s not in his nature. In fact while I am composing this, he is washing the dishes. I am so grateful for the role he has played and will continue to play in my life.

I have questioned a lot of things in my life over the last ten months, but one thing I have never questioned was the decision to marry Chris. In fact, my cancer diagnosis only solidified the fact God brought us together for His good purposes and for each other. I have needed and appreciated Chris in ways I never anticipated. And I am confident – had the roles been reversed – I would have failed miserably at the tasks to which Chris gracefully tackles every day,

When we repeated our wedding vows, I believe, in my naivety, I grasped the gravity of the commitment. I just didn’t take into account that the inevitable (in sickness and in health) would happen at such an early stage in our marriage. In fact, Chris was the one who delivered the news to me that the tumor in my arm was malignant after he had already processed the devastating blow from my doctor. He had always been my rock, but I’m sure in that moment, he knew he would be called to a higher level of strength and service for his wife and family – perhaps, a calling he didn’t want to shoulder but he wouldn’t cower from his responsibility. If any man could handle this task with grace, strength, and even humor, it would be Chris. In the days following to the present (and no doubt in the days to come), he has remained the epitome of a servant-leader. And, I know I’ve said it before and I will say it many times over – he doesn’t complain about our life-altering situation. There are no “woe is me” moments. He simply does what is asked of him and trusts God to carry him when he is too weak to carry himself. I am always amazed by his resolve in this capacity. His trust in God is real and applied rightly.

I can remember in the early weeks of my diagnosis, I would experience near panic attacks about the unknowns. The nights were the worst. Chris would just lay by my side, hold me and pray. I needed to know He was right there beside me, even if he couldn’t change a thing about my diagnosis, he was there. Then, when I was undergoing chemo, I would be in bed many hours of the day – exhausted, aching, nauseated. He would pray with me and then read to me until I fell asleep. It was one of the few things that would distract me long enough to rest. Sometimes he read one chapter. Sometimes, he had to read many more. When the tumor grew in my arm and the nerve pain was almost unbearable, he would hold my left hand at night because my right arm had to rest in some very precarious positions. And when the cancer starting eating my vertebrae and the radiation followed, he simply had to lay beside me because I was surrounded by pillows to provide the most comfortable positions. Many nights, he literally had to put me in bed, turn me over and position my pillows as I was incapable of doing it on my own.

He has dressed me, tied my shoes, prepared juice after juice after juice (plus cleaned the dishes), shopped for groceries and bathed Alexa a thousand-times over. He even learned how to fix her hair. He has been with me at every surgery check-in and recovery. He sits beside me in countless waiting rooms. He waits patiently for me to return from scan after scan after scan. Oh yes, and he still has a full-time job he fits in during our numerous visits to MD Anderson.

He still thinks I’m pretty although I have lost close to fifteen pounds, my arms have wasted away to sticks, I have a port sticking out of my chest and an impressive scar on my right arm. My shaved hair is now a head full of short curly locks turning whiter by the moment. Hmmmmm – not exactly the image of a beautiful bride, but I know he will still be beside me. Why? Because he has told me there is no place he’d rather be. Even when, I don’t feel like I resemble the old Kelsey at all.

A man who is highly respected in his workplace and by his peers. A man who does his job well – be it professionally or at home. A man who loves his family and sacrifices his dreams and desires for us. By the way, Alexa adores her Daddy and says he is very handsome. I concur. He loves the Lord and serves Him faithfully. He gently speaks truth into my heart when I need it, and he wisely listens when he knows there is nothing to say. He helps me process every step of this ugly disease (which usually involves crying, anger and irrational thoughts) without casting judgment. He prays and prays and prays. His trust in the Lord has not wavered when mine has been incredibly weak. He loves me as Christ loved the church, and he has done this so very beautifully the last ten months.

I don’t believe I’ve ever doubted Chris was the man for me, but if there were any doubt, this cancer diagnosis proved he is the only man who would stick this out with me. I know of no other man who would do the things he’s so selflessly done for me and our family. . . even my girlfriends (who also deeply love their husbands) have agreed with me on this one.

Honey – thank you for being my valentine every day. Thank you for loving me unconditionally – especially when I haven’t been easy to love or look at. I deeply respect and admire you – as a man, a husband and a daddy. Even though I still hate cancer, I am so grateful for the opportunities the Lord has given us to grow in our love & respect for each other and deepen our trust in the Father through it. Happy heart day!! You’ve made me the luckiest girl in the world. I believe this card sums it up well . . .

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Thursday, February 13, 2014

Better late than never!

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I know . . . this is embarrassing! But I told myself – I don’t care how pathetic it appears – I will have a Christmas post up before Valentine’s Day . . even if it is the same week as Valentine’s Day, even if it is the day before. I repeat – I have yet to make a scrapbook album for Alexa. It appears this blog may be the “memory” she will have to look back upon and say, “Oh yes, we did celebrate Christmas in 2013.” So forgive the tardiness (as you have so many times before). I am not a well-oiled blogging machine . . . just a Mama trying to prioritize her life based on “What must get done,” “What should get done,” “What I’d like to get done,” and “In a perfect world, it will eventually happen.” Can I hear an “amen!?”

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This post will play out like a family album mostly showcasing Lil’ A with her gifts & delight-filled smiles. It’s a post, after all, for her. Unfortunately, I wasn’t on top of capturing pics of the family this year (sigh). I wouldn’t recommend operating heavy machinery while viewing this post but perhaps it will rev you up for Christmas 2014 or remind you to write some ty notes for the gifts you received. A very belated Merry Christmas to ya’ll!! And yes . . . a belated Disney World post should be up next week. There were so many special memories, I want to make sure I don’t miss anything.

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We celebrated Christmas at my sister’s new home in Edmond. Due to my week-long stereotactic radiation in November and a trip to Disney World in early December, we opted not to travel to CA to be with Chris’ family. My body was weary and our suitcases were too. We had a wonderful time with our immediate family enjoying a low-key Christmas. Alexa enjoyed oodles of quality time with her cousins – Rylen & Layton. They are pretty much inseparable. Alexa thinks they are “it.”

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The themes for most of Alexa’s gifts were pink and Minnie Mouse/Disney items along with “kitties.” Alexa really wanted a real kitty for Christmas but that won’t be happening on Mama’s watch. I can say that because she can’t read . . . yet.  A friend gave me five years before we cave in and Alexa wins the “real kitty” battle. We’ll see. As long as cats have dander, it won’t be happening in our house.

KITTY CATS

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She named this little guy (actually a girl if you ask her) – “Blacky-Whitey.” Let’s say Alexa is very descriptive.

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She’s sporting the kitty slippers. I love these boiled wool slippers from Garnet Hill.

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Checking out her personalized (pink) kitty sleeping bag for sleepovers at the cousins and trips to Houston/Mimi & Pop’s.

DISNEY TIME

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If you aren’t up on your Disney Jr trivia. This is Mickey’s Clubhouse.

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Checking out her Minnie heels and activity book in her new Minnie pajamas while her big stuffed princess Minnie Mouse looks on. Yes . . . she likes Minnie Mouse.

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Alexa also received a “sparkly” Minnie from Ama & Opa in CA. She was in heaven with mousekateer madness.

MORE GIFTS & FAMILY

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One of her fave games. She plays it often at our “home away from home” in Houston.

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A “sweet” moment as the kids find another treasure on their scavenger hunt. A new Christmas tradition my mom instilled in 2004 when mom & dad moved to Dallas.

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Alexa & Rylen showing off two of Rylen’s several artistic creations. She is ah-mazing at crafting these bracelets. Let me know if you want one. She takes custom orders! I tried making them as well. It was excellent hand therapy.

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I think they could be sisters. Don’t you!?

A CALIFORNIA CHRISTMAS IN OK
Since we didn’t celebrate Christmas in CA this year, we had a special “gift opening” time at our home. This was pretty great for Alexa because she didn’t have to exercise very much patience waiting for others to open their gifts.

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Alexa was ready to “craft” this reindeer ornament immediately after opening it. So . . .

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she crafted!!

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VIOLA!!

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Just chillin’ – but check out the excitement below.

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And why not end with this hunka hunka burnin’ luv (with a bit of bedhead)!! I love both of my sweeties.

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Saturday, February 8, 2014

Steady on . . .

“Teach us to number our days aright, that we may gain a heart of wisdom.” Psalm 90:12

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You should know me well enough by now to know that before I offer a glimpse into my heart, it’s helpful for me to glimpse into my daughter’s eyes. She provides me with inspiration and makes me smile. Earlier this week, the little fashionista insisted on wearing all pink. It was the only way I could coerce her out of the pink pajamas she was wearing. Yet, after she composed this assemble, I began to wonder if the pajamas weren’t a better option. I decided it was too cold to venture out anyway, so Mommy had to let the outfit “go.”

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Work it, Lil A! Work it! “You know you like it, Mama!”

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Okay . . . I feel better now. After a long, oft-stress-filled week at MDA, I find myself lacking motivation to post anything. I feel as if there is so much decompressing I have to do. There is new information to process, physical & emotional fatigue, and the obvious realities one faces when returning home from a nine day absence – mail, laundry, grocery-shopping, reorganizing, etc . . . everyone has to face those obvious realities after a sabbatical; however, I have found them exceedingly more difficult to face after returns from a “cancer” center. It’s almost been a year, and the coming-and-going routine is still difficult.

Part of this is because I often find myself unsure where I fit anymore. When I‘m at MDA, I look around to find mostly aged, wrinkled faces, and think to myself, “I am not supposed to be here. My husband is not retired. I don’t require a walker. I never smoked. I have an energetic three-year-old. I have a life to live – I am supposed to have so much more to look forward to. I shouldn’t be here.”

But then, I return home and look around to find I don’t fit here anymore either. Being an older mommy with one young child, I never really felt like I did anyway, but I really feel out of place now. I go to a playground and hear moms talking about their everyday concerns – misbehaving children, homeschooling lessons, pregnancies, spring break plans, etc . . . and I realize I have little to offer the conversation. Unless they want to hear about ports, PET scans, and chemo pills (which ironically makes pregnancy a non-option). Even when my mind tries to focus on being “in the moment” with Alexa, I find my thoughts wandering to the real concerns I am facing – is this cancer stable? Will I be here next year to push Alexa in this swing? Will we be able to have more children? Will there be a day I don’t think about this cancer and can just enjoy the every day life I used to take for granted? It’s an incredibly weird and lonely place to be. I can talk about my future insomuch as I know when my next doctor’s appointment or scan will be. Aside from that, the future is the next moment God gives me – that’s all I’m promised. That’s all anyone is promised, but we certainly don’t live that way. Do we?

I am not asking for sympathy here. I am simply explaining how it feels to live in this strange realm of longing-for-everything-to-be-as-normal-as-possible and knowing it just isn’t anymore. A pastor told us early on that our lives would never be the same. I knew he was right, I was just na├»ve about what that meant. Our entire life has changed – my husband’s, my daughter’s, our parents’, our extended family, etc. . . I view things differently. The things that were such a big deal before, just aren’t. I used to dread the bedtime process with Alexa Hope, and now I treasure it. I could rock her all night. And, I believe my family realizes just how much we need each other. Our times together are precious and necessary. Life is just different . . . and it is emphasized most during and after a visit to MDA.

Ergo – I don’t post much after a visit. However, I did promise you I’d share my thoughts on my last visit and how we would appreciate your prayers in this down time (for which we are very grateful) before heading back for rescans and a follow-up appointment March 28-31.

Overall, the week went incredibly well. Looking back at my schedule, I am always amazed at the daily, moment-by-moment grace God’s extends to me when I’m there. I was able to interact with some really special patients and workers. There were no hiccups in my schedule. Physically, I probably felt the best I have in several months, and the news we received made the trip much more bearable. I am always keenly aware the news could be much worse.

The only downer for me personally was meeting with Dr. Benjamin. I have thought many times this week about how to express my feelings about him on the blog without sounding overly negative. But the bottom line is – I don’t really like him (and it isn’t his fault). Our personalities don’t match, and he’s the guy who shoulders the responsibility of delivering the big news. I felt rather discouraged leaving my appointment with him when I should have been praising God for such a good report. I truly believe if he had to tell someone they won the lottery, they might walk away feeling overwhelmed instead of ecstatic because he would explain the tax consequences and emotional effects the “big win” would have on their life (and perhaps that should be the case with lottery winners). Because Chris does not have the same opinion I do, I always listen to his take on the appointment because he processes it so differently. He reminds me Dr. B is an academic. He is a brilliant scholar who knows a great deal about this disease and we are in excellent hands. We would rather have a brilliant doc than Mr. Personality . . . well sometimes Mr. Personality might not be too bad because I am funny and he doesn’t ever get my jokes (wink, wink). Dr. B. is just very deliberate in what he shares and he isn’t going to say anything that would get him sued. In that, he can often come across a bit discouraging but I don’t think he means it to be that way. It can just be received incorrectly. And let’s be honest, with a rare metastatic sarcoma with no targeted treatment, there isn’t a bunch of “whoopin’ and hollerin’” at these appointments. He wouldn’t be in this field if he didn’t care, and so, I have to trust that.

He said, “I was doing better than he expected.” Hmmmmmm . . . what does that mean? What did he expect? How bad am I supposed to be?

He said, “My lungs looked better.” I want to know what “better” means. Is there cancer on them or things that look like cancer? Do I need another antibiotic? What’s going on?

These sorts of comments bother me, but as my Dad reminded me, “You always want to exceed his expectations. Let’s keep praying you exceed his expectations. And, Dr. B is only looking at you in regards to medicine – not your faith, your fight, your support group, etc . . .” Another friend said, “Perhaps when Dr. B says you are doing better than he expected, that is his way of doing a victory dance.” Perhaps – I’d prefer the victory dance. It’s just that I read so much into what he says and how he says it, and I probably shouldn’t.

And, of course, my heart sunk to hear of two more spots that lit up on the PET scan. I desperately wanted to hear, “It’s all clean.” However, I am thankful the spots are so insignificant, even Dr. B didn’t seemed overly concerned with them at this appointment. I just know that the majority of body parts that have lit up on a PET have been cancer – and we are praying against that – totally and completely against the formation of any cancer.

I was sharing with my family that one of the most frustrating things for me is the inability to simply savor the good news and rest in that. As soon as we walked out of the appointment, my mind began preparing for the next appointment, wondering what the next scan would reveal, the what ifs, etc . . . It’s like I had held my breath since my last visit to MDA. I let it out in the appointment with Dr. B when he gave me my results, and then I took another deep breath in preparation for my next visit in March. Yuck! I just hate that ugly reality with cancer. I am asking the Lord to help my heart in this regard.

And so – that is where we are. Utterly thankful my body seems clean with the exception of two very small spots (one on my right calf and one on my T6 vertebrae). Both of which we don’t even know are cancer and are praying aren’t. My lungs appear to be clear and the pain I am having is associated with two herniated discs (between T7/T8 and T8/T9). I will continue my full dose of Votrient and my bone-strengthening shot. I have resumed hand therapy and can start low-impact exercise. Minus the ribcage/skin sensitivity, I feel very good. Better than I have in so, so long. My hair continues to grow curly (and white). I praise God for the feeling of overall well-being. I praise Him for the privilege of being better able to fulfill my role of wife, Mama and friend. I praise Him for the blessing of family and friends with whom I can process this madness and gain godly, encouraging perspective. I am so thankful for the reminders I am a fighter, and I am promised abundant life in Him – it’s my choice to believe in and live out the promise.

Steady on . . .

PRAYER REQUESTS

I have listed several as God has laid them on my heart this week. I pray over these throughout the day, obviously because I am living this, and the needs arise moment-by-moment. In no way, feel obligated to pray over them all. It’s my Type A, “Just reminding you, we need you in big & small ways, God,” list.

- For total, complete, God-sized healing from cancer (forever) and a long life to make His glory known through this miracle.

- For complete destruction of the small spots on my calf & T6 vertebrae – no spread, no recurrence, no cancer. For a beautifully clean PET scan in March.

- For complete healing of whatever is going on in my lungs (still coughing quite a bit & difficult to take a deep breath). Complete healing of the herniated discs in my mid-back. Dr. B asked me not to go to a neurosurgeon about this until my next appt in March.

- Continued divine protection over my lungs/brain/any major organ. This cancer tends to attack lungs/brain. We see His hand in the fact it hasn’t.

- For the radiated areas of bone to continue healing with no complication, esp the pelvis joint.

- For the Votrient to continue its effectiveness in stabilizing and preventing the spread of cancer cells.

- For God to eradicate any long or short-term side effects from the Votrient (no high blood pressure or liver damage) and continued exposure to radiation.

- For the 2nd part of the clinical study I was enrolled in to provide helpful insight into how to better treat and kill this disease. Dr. B did not have the 2nd part of this study at my last appt. The 1st part of information gathered was not helpful.

- For the ability to carve out time to sweat (hooray) and get back to my hand therapy. From my therapy yesterday, we know my grip strength has increased. That’s exciting!! I am relearning how to juggle and shoot a basketball.

- We are ultimately praying God would heal my body in such a way (through medicine, nutrition, exercise & divine intervention) that my body will be able to recognize cancer cells once again and obliterate them.

- For wisdom in how to plan our days . . . we have decisions to make and they are complicated with this disease. Should we move? What school will Alexa go to? Should we try to plan a vacation?

- Living each day to its fullest and believing God for BIG things. Appreciating where we are and growing in it . . . steady on, my friends, steady on.