A pirate’s life for me!

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



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


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

THE DETAILS


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


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





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


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


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


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


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






The spyglass and binoculars were made with toilet paper & paper towel rolls wrapped in duct tape and twine.


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







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

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


THE GIFTS

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




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







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


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

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





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





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




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


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





FAMILY PICS


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


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


Alexa with Uncle Mark, Aunt Holly, Rylen & Layton – (Kelsey’s sister)




And . . . that’s a wrap, mateys!! Happy 4th Alexa Hope. We love you!!

Heading south

I don't have anything pithy or inspirational to offer you. Just a post to let you know we are trekking down an all-too-familiar road to an all-too-familiar destination. As protocol for my PET scan tomorrow, I am digesting my high protein, no carb diet of McDonald's salad. Mmmmmmm, can it get any better? I always dread the day before a PET - no carbs and no eating for six hours before the procedure (sad face). Then, I dread afterwards - no hugging Alexa for at least 12 hours (even more sad face) but I can drown my sorrows in bread!!

To be entirely accurate though, we are driving to Dallas this evening and will head to MDA tomorrow morning. We plan to arrive just in time for my scans . . . no need to get there any earlier than needed. This is, after all, the city I stuck my tongue out to on the plane as we connected there on our way home from CA in late February. I know . . . I am über mature! But, I see no need to be rose-colored. I still don't like going to Houston. I don't enjoy packing, leaving home, leaving routine and feeling like a lab rat. I don't know if anyone would. However, I digress. Just a bit melancholy, as I tend to be the night before D-day. As a gal asked me the other day, "Are you in remission?" I replied, "Unfortunately, no." For me, this trip is just a reminder the disease in my body has not been stopped. And yes, since the last visit - especially when my right calf started hurting - I have been holding my breath.

As always, we would deeply covet your prayers as I face more scans and news of how I am doing and what is next. Many of you have told me you are praying expectantly for ONLY good news, for our God to show up in ways only He can - BIG ways - for complete & total healing. This has been and will continue to be our prayer as well. I will post this weekend with more thoughts and PRs when I have a bit more spunk. Also look for a post of A's birthday party with oodles of pics. That is where I have been investing my time & energy.

MDA SCHEDULE

FRIDAY, MARCH 28
1:00pm - Check-in for PET scan
1:30pm - PET scan injection (where I have to lay still & hang out in isolation for over an hour)
3:00pm - PET scan & CT scan of chest (w/wo contrast)
-- I spoke with an MDA tech today and he is going to take the CT scan of my chest right before the PET. (It was originally scheduled for 6pm Friday evening, so this is a HUGE blessing because I cannot eat for either procedure. I would have had to fast for 11 hours. I know, it is ridiculous how much I enjoy food!) So, I will also be doing the CT scan of my chest right before the full body PET scan.
3:45pm - Blood work
4:30pm - Denosumab shot (bone-strengthening shot)

WEEKEND - off!! Do fun things with my family!! Rest & play!! Watch March madness!!

MONDAY, MARCH 31
9:00am - Dr. Benjamin

Thank you for coming alongside us on this unexpected journey. We are so grateful for your love, encouragement & prayers!!

Resolved–at least I think

Thank you so much for your immediate prayers and concern on my behalf. After talking for almost two hours with four different people this morning, I think we have a temporary solution until my preauthorization is approved.

I should receive five days worth of Votrient sometime tomorrow in the hopes my preauthorization will also be approved in short order, and I will receive the remaining amount of my full prescription before we leave for MDA on Thursday evening.

My doctor has also placed an urgent request on the signed preauthorization, so the approval time with the clinical review board should be shortened from 7-10 days to hopefully three (or less). We had to switch pharmaceutical companies from Texas to Florida, but everything seems to be set-up in my account and with my insurance.

I apologize for exhibiting such frustration in the last post. I know Christ would’ve handled it differently, but as I told a friend today, the real loser in this situation is my daughter who was ignored by her Mama some of yesterday and some of today while I made phone calls about something that should’ve been avoided. (Heck, even while I take time to write this update post.) I grieve when this disease interrupts our time together – and it has A LOT the past year. In my “I still want perceived control of my life,” mentality, I can get so frustrated by the “reality” I have no control over any of this . . . with the exception of my attitude and my faith. Insurance, disease and human hiccups should not touch that, and I have allowed them to many times over the last several months. Ahhhhh – the learning curve of sanctification.

Thank you again, warriors for fighting on your knees on my behalf, and thank you for the great suggestions and insight the next time we are faced with a similar predicament. Now, on to continue praying this pill is actually working and worth all of the extra time expended to ensure it’s at my doorstep.

Please pray big

To make a long story short, I am asking my warriors to pray for favor tomorrow as I seek one last option to get my Votreint (chemo pill) refilled and to my doorstep by Wednesday of this week.

I will take my last set of pills tomorrow, and as of this evening, BCBS has denied the right to give me more until I receive preauthorization (once again) for the high dollar drug. By the way, they didn’t alert my specialty pharmacy or me that the authorization had expired or the fact authorization takes 7-10 business days! I found that out talking to the third customer service rep today.

I spent almost two hours on the phone today talking with six different people trying to understand why my request to get my Votrient refilled over a week ago has continually been delayed . . . AND every story I heard was different . . . different reasons . . .  different excuses . . .  different suggested plans of action. I have NEVER had issues getting this drug before and now they wait until one hour before “closing time” the day before my last dose to tell me “no.” Actually, my insurance didn’t tell me anything. I heard that from the customer service rep at the specialty pharmacy who has been dealing with my insurance for over a week now to get an explanation. She went above and beyond the call of duty. I decided I needed to call the insurance for myself.

I was so frustrated today hearing, “I understand, but there is nothing I can do.” First of all, “Um . . . no, you don’t understand.” And, two, I thought we paid for insurance so we could get coverage when we needed it. This medicine isn’t for a headache, after all. This is a drug for cancer. Specifically, it is for a thirty-five-year-old mama/wife who has Stage IV cancer and wants to kill the heck out of this stupid, stupid, stupid disease not spend two hours confused and frustrated by how helpless I am in the situation even when I tried to do the right thing over a week ago, even when I followed up several times with the specialty pharmacy and they said it was being taken care of.

The lesson I should’ve learned several months ago with insurance is that you have to be your own advocate. No one cares about your situation like you do because your life depends on it, not theirs. As I cried this evening, I was reminded there is only ONE other who will advocate for me. He promises to do it night and day. He will do it with wisdom and holiness – not the way I handled it at times today.

I am trusting Him to do just that, and I am praying for strength to trust Him with the results tomorrow as well. I plan on starting my phone calls tomorrow at 7:30am to pursue the last option offered me by the kindest of the customer service reps today.

At the end of this, I don’t even know if this chemo pill is helping, but I think it is best to continue taking it until Dr. Benjamin says otherwise. I am praying the Lord will guide my steps and guard my life, even with ridiculous hiccups like this.

Up in stitches . . . five, actually

I didn’t realize there was an initiation for turning four, but it seems Alexa may have stumbled (literally) into a rite of passage by making her first trip to the ER. On Sunday evening, I headed to Starbucks to make the most of some time away to work on a slideshow for Alexa’s 4th birthday party as well as write her a letter. (I have a brilliant running list of all the things I want to do for her party, but I have a terrible time executing them.)

Anyway, about an hour into my “creative” party-planning time, Chris calls and said he is headed to urgent care – Alexa bit through her lip. I didn’t ask any questions. I just said tell me where you’re taking her. I loaded up the computer, battery, external hard drive, pages of notes, headphones, etc . . . and drove like a “bat out of hades” to be with my girl – praying all the while that God would calm her fears, her pains, help her be brave, and grant us excellent & caring nurses/doctors. I also prayed whatever happened to her lip could be repaired in such a way her lips would be spared and God would protect her gums/teeth. I know I am partial, but I believe God gave her a beautiful set of smackers and I didn’t want an urgent care doc to butcher them.

After all I have gone through physically this year, I know how critical it is for a “girl” to still feel she is beautiful. (Goodness knows, I don’t look at ALL how I used to and it is hard to see an emaciated stranger staring back at me in the mirror. I don’t like how I look anymore. I just don’t. I no longer look or feel like “Kelsey.” However, I am 35 and I can get over it.) Regardless of that side note, I don’t care how superficial that may sound, I didn’t want Alexa to have to see a huge scar or a botched lip on her face the rest of her life and struggle with self-image because of it. Anyway – those were the prayers racing through my mind as I met Chris, my parents (who just happened to be at our house preparing juice packets), and my precious little girl.

While I applied ice to her mouth and rocked our sad Alexa bear, I got the story on how she fell. Apparently, she wasn’t even rough-housing with Daddy – which is a very common occurrence. They were playing with Legos when she decided to jump over Chris’ legs. She said she was going to grab the coffee table with her arms (which is constructed of metal and glass), but I guess she tripped on Chris’ legs and her mouth took the brunt of the fall on the edge of the coffee table. I am so thankful her teeth were intact, and I was so thankful I wasn’t there. My dad said he will never be able to get the sound of her mouth hitting the table out of his head. And since I have also bitten through my lip, I knew it was probably very bloody. My mama’s heart may have lost it if I had seen and heard it real-time. I was grateful to meet them there and hold her, bloodied t-shirt and all, after the fact.

We met with two sweet and straightforward docs at the urgent care clinic in Norman. Fortunately, the three inside punctures would heal on their own – no stitches required. Unfortunately, they said the outside bite had cut just close enough into her vermilion border (which is the sharp demarcation between the lip and the normal skin) that it would require stitches. Not only that but the stitches needed to be perfectly aligned with the vermilion border and skin or it would heal crooked and her lips wouldn’t look right.

Right then, we decided it was best to go to OU Children’s Hospital to see if a plastic surgeon could do the stitching. So, we headed to OU Children’s Hospital while Alexa rested. She did ask if her cousins (Rylen & Layton) could be there. So, my sis and Rylen left church to be with us at the ER. I was so thankful my family could join us, including my parents. It seems we get to spend a lot of time as a family in medical facilities anymore. Regardless, this greatly lifted Alexa’s spirits and gave me more peace of mind.

Long story short, we received excellent care at Children’s. We actually knew the first doc Alexa met with so that was a huge answer to prayer. He also encouraged stitches by a plastic surgeon. The plastic surgeon, Dr. Johnson, was so gentle with Alexa and he did a beautiful job on her lip. The greatest blessing was Alexa was a  “warrior princess.” She never shed a tear at the hospital. They didn’t “papoose” her – which is a normal procedure for children when they need to remain calm and still. Alexa simply held my hand and was compliant with every one of Dr. Johnson’s requests. She didn’t flinch when Dr. Johnson gave her several numbing shots in her mouth and weaved stitches in and out of her lip. All of the medical staff was amazed at how brave she was. She truly was a rockstar, even chatting with Dr. J while he fixed her up. We are so thankful God answered our prayers. And . . . we all got a little comic relief with Alexa’s antics after the procedure. The numbing meds definitely loosened her up. Just check out her groggy eyes below.

 
Alexa finally fell asleep around midnight. She is doing great minus complaining of pain in her gums/front teeth. The wound looks like it is healing very well. We have always taught Alexa God will heal her ouchies (we pray that for her and for Mommy every day). We will continue to watch and pray for the Lord to show us His faithfulness.

Who would’ve thought both Alexa and Mommy would have had work done by plastic surgeons in the same year!! Goodness, Daddy has two high-maintenance gals on his hands!!

We love you sweetie and we are so proud of our very brave, full-lipped four-year-old!! You will look soooo tough for your pirate birthday party!

On another note, I may not post a blog until A’s party since Chris’ parents will be coming in tomorrow and the house is in disarray, so I wanted to pass along a few prayer requests as we also prepare for another trip to MDA later next week.

PRAYER REQUESTS
--That Alexa’s lip would heal without infection or incident. That the scars will barely show and the alignment will be correct. Thus far, she has been patient with Mommy’s obsession to ensure it stays clean and medicated. She will have a follow-up with Dr. Johnson next Monday, March 24.

--For about two weeks, I have been experiencing increasing pain in my right calf. This is one of two places Dr. B identified small spots on my last PET scan. I have struggled with discouragement and anger since the pain commenced. It is so frustrating to finally feel like one area is healed and then have to deal with another. I don’t know if I’ll ever feel good enough to exercise again. Pls pray this pain would subside and God would miraculously destroy this spot before my next PET scan on Friday, March 28. My trust in God is always tested when new pain rears its ugly head.

--My two herniated discs have become increasingly more painful as well – especially around the right side of my ribs and sternum. I am struggling (again) to take deep breaths. Again, we are praying for miraculous healing as there is little they can do to treat these and I refuse to stop being a Mommy because they hurt.

--We are still asking the Father to allow my chemo pill, Votrient, to work. If the spot on my calf is cancer and is growing, we know that isn’t the case, and disease could be spreading to other areas. From what Dr. B has told us, there isn’t really another treatment option if it isn’t working. We, of course, continue asking Him to stop the spread of this nasty disease in my body – no more disease in my bone or soft tissue, and divine protection for all of my organs – especially my lungs.

--Speaking of lungs, my antibiotic seems to be working in clearing out my lungs and sinuses. I am still coughing but it isn’t as productive. I would love to have clean, healthy lungs again.

--We are praying that the results of the second part of the case study I enrolled in  at MDA will be available. This dealt with genetic testing. We are praying the results will provide more insight as to how to better treat me on an individual basis concerning this rare disease. We are praying for Dr. B to have the wisdom to know how to interpret the results.

--Of course, I always dread the MDA countdown. Please ask the Father to help me continue to put my trust in Him, to enjoy each and every day (without as many tears), to choose to push pain aside and enjoy time with my family – especially at Alexa’s big #4 party. I want to be “present” every moment of the celebration. After all, she is our biggest present from the Father.

Four beautiful years

It is so hard for me to believe it has already been four years since the first time we saw her beautiful face. Alexa Hope entered this world just seconds shy of March 14th. She made her debut at 11:59pm on March 13th – eleven days prior to her due date. She surprised us then and has continued to surprise us ever since. We prayed and prayed (and waited and waited) for a precious gift from the Father and He gave us more than we ever could have imagined in our bright & brown-eyed Alexa-bear. She is, indeed, our “hope” fulfilled.

Oh - how our lives would be empty without her contagious smiles, dramatic facial expressions, verbose language, vivid imagination, full-on singing and silly dance moves. Especially as the events of this past year unfolded, it was Alexa’s smiles, squeeze hugs, even her “expectations of normalcy” that kept us going. Goodness, how we have all grown over the last year!

Because we have experienced difficulty having children (and because both Chris & I have always desired children), Alexa Hope has an incredibly special place in our hearts. Therefore, every milestone – every first and every last (sniff) – are big deals to this Mama. Birthdays are no exclusion. Although today held no particular hoopla minus a quickly made pirate party hat, “party blowers” (as Alexa calls them) and two rounds of pancakes (one from scratch and one from IHOP), we look forward to parrrrrrrtying with our family “pirate style” on March 22nd. Expect more birthday fun at that point. Currently, Mommy is dreaming up how to make it super special and uber fun for her little sweet pea.

Here are a few snapshots of our newly christened four-year-old. I thought it would also be fun to include a few images from her previous birthdays. Oh my – how time flies!! I count it as one of my greatest privileges, perhaps my greatest privilege, to be a mama, and I pray the Lord grants me many, many more years to celebrate the gift of Alexa Hope. We have never doubted for one moment that God has a beautiful plan for her life. It’s a joy to watch it unfold. As her life verse states, “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit,” (Rom. 15:13), Alexa spreads hope and joy wherever she goes. We pray that never ends.

Yo ho mateys away . . . Alexa Hope is four-years-old today!!


I don’t know why but Alexa has always been fascinated with party blowers! Needless to say, this party blower got worked over today!

A GLIMPSE BACK . . .


You were just perfect the day you arrived . . . perfect.


You were all smiles for your 1st birthday. We all agreed that somehow you knew it was all about you that day and you put on a stellar performance.


Birthday #2 and you still have those chubby cheeks and big, brown eyes I love so much.


We loved watching you relish in hearing your name inserted in “The Birthday Song.” It brought us great joy to see the joy you exhibited on your third birthday.

We can’t wait to have a swash-buckling time with you on your 4th birthday!! We love you sweetie!!

Still marching forth . . .

Fast forward eight years (well, sevenish years in this pic), and we’re still in this together – hand-in-hand.

Eight years . . . yep, on March 4, 2006, Chris and I bravely “marched forth” into marital bliss (and refinement). Neither of us expected to be facing cancer shortly after our seventh anniversary. I chuckle to read my anniversary post from last year. I’ll share this excerpt with you . . .

One thing I can take away from this past year is that we make a pretty good team. We had some trying seasons over the past couple of months, but we’ve been able to encourage each other in the midst of them and persevere (we’ve even laughed too). We look forward to a new year – anticipating more time together, travel adventures and more opportunities to grow in our spiritual walks as a couple. We are eager to see what God has in store for our family and how He’ll allow us to be a part of what He’s doing.

“More time together, travel adventures and more opportunities to grow in our spiritual walks” – ha! I need to be more careful about what I write. Little did I know that “more time together” would be spent in numerous doctor’s offices, our “travel adventures” would be wearing out a path between home & Houston in a mini-van, and the “opportunity to grow in our spiritual walks” would be stimulated by a rare, stage IV cancer. The irony is moments after I wrote my anniversary post last year, I was stretching out what I thought was median/ulnar nerve tightness in my arm when I discovered a very insignificant bump underneath my right forearm. I showed it to Chris, but it was so small he could barely feel it. It was the first time I had noticed anything. Little did I know that insignificant bump was a massive malignant tumor embedding its nasty tentacles around the ulnar nerve and flexor tendons in my arm . . . and it was spreading its poison throughout my body. That disturbing discovery was made a year ago on this day.

Looking back, I wouldn’t say I am “eager” to see what God has in store for our family. (I am never eager to go to MDA which seems to be the institution determining our course these days.) However, I know He holds the future in His hands, and He has continued to show us His faithfulness and His mercies (and even some miracles) along the way. I do pray He has much better news in store for our 8th year of marriage. After all, we’re trusting and believing for BIG and miraculous things. And certainly, I believe He is using this unexpected journey to show us (and hopefully you too) what He can do in and through us. All of that said, I don’t want to repeat the last 365 days, and I pray the next 365 will bring more joy than tears. Just so you can better understand what we’ve faced since our last anniversary. Here you go . . .

OUR YEAR IN NUMBERS 

13,540 miles traveled for treatment
13 trips to Houston
32 trips to MD Anderson’s campus
34 trips to Mercy Hospital in OKC
20 hand therapy appointments
10 doctors who have played integral roles in my treatment
5 surgeries
6 rounds of stereotactic radiation
8 chemotherapy treatments (12 weeks)
15 weeks on a daily chemo pill . . . and counting
14 MRIs
6 CT Scans
3 PET Scans
2 Bone Scans
2 EKGs
4 Neulasta shots (bone marrow stimulator)
4 Xgeva shots (bone strengthening shots) . . . and counting
Too many doctor’s appointments, sticks in the arm and organic juices to count
. . . and one shaved head

Every year in our Christmas card, we include a top ten list of the year’s blessings. It’s a wonderful way of looking back on the year with a deep sense of gratitude for all the Lord has done. On a rare date night this winter, I laughed and asked Chris what would make the top ten list o’ blessings this year (meaning the blessings for 2013). We shared an “only you could understand this” smile with each other as a vast majority of this year was just  . . . gross (for a better grasp of the word “gross,” please consult the year in numbers above).

And yet, as we shared our hearts about 2013, we created an impressive, I would dare say beautiful, list of God’s goodness. The top ten list never made it in a Christmas card this year. We have sort of been preoccupied with more pressing matters (again, please refer to the year in numbers above). Regardless, I wanted to include 2013’s top ten blessings in this post. I apologize. It’s the journalist in me that carries with it a strong conviction to record our family’s milestones. They serve as powerful reminders of God’s faithfulness – stones of remembrance, in Bible-speak. Regretfully, I am far too fickle and forgetful otherwise.

KENNEDY’S 2013 YEAR OF BLESSINGS

10. REFRESHING GETAWAYS – We were privileged to enjoy a 7th anniversary trip to the Big Apple just days before my diagnosis. And, we were blown away with an all-expenses paid trip to Walt Disney World with my family courtesy of my mom’s sales representatives, senior management and several of her co-workers  at Balfour. I don’t mean to be cliché but in all honesty, both vacations proved to be magical and provided us with memories to last a lifetime.

9. AFFORDABLE INSURANCE – We are grateful for our insurance regardless, but with the approval of “Obamacare” (cringe . . double-cringe . . . triple-cringe), the provision of excellent insurance is a blessing indeed. To enlighten you – our insurance was billed approximately $645,268 last year. Let’s just say, we didn’t pay anywhere close to that amount. There are moments my skin boils and my palms sweat thinking about the future of healthcare for a person like me. I know the government will punish me for desiring the best treatment for my rare disease. So for the current blessing of unbelievable coverage, our hearts say thank you BCBS and thank you University of Oklahoma!

8. JOB FLEXIBILITY – Speaking of the University of Oklahoma and Balfour, we are utterly grateful for the flexibility they have afforded Chris and my Mom to work remotely. Because of their gracious bosses, both of them have been able to join me on every trip to Houston. Mom sets up her remote office in the dining room, and Chris takes his laptop & Bluetooth to every waiting room on MD Anderson’s campus. They often work very late, rather, very early hours to finish their work but I, for one, am so grateful they have been able to be by my side during some of the most trying days of my life.

7. PRECIOUS & UNEXPECTED GIFTS – We have been humbled and moved to tears by the sacrificial love poured out on our family during this season. (Please see Dec. 8 post for just a few examples of this tangible love - Never Alone.) Simply stated – we are indebted.

6. MIRACLES – This was one of our 2012 blessings as we witnessed God working miraculously in many of our friends’ lives. This year, we have been on the receiving end of His goodness. You can call these provisions “answered prayers,” but we prefer to deem them – miracles. Even in what we considered serious setbacks, God has shown Himself as the all-powerful Provider & Healer. He has gifted me with a tumor-free right arm – the same arm doctors expected to amputate. Through incredibly generous friends, He provided the perfect “home away from home” in Houston. He hindered the spread of cancer through my lymph system opting instead to spread to my bone which can, fortunately, be treated through stereotactic radiation (with a 90% success rate for tumors like mine). A true blessing for a type of cancer that is resistant to general radiation & most forms of chemotherapy. These are just a sampling of the “big” miracles. As a card I cherish says, “Sometimes the miracles God sends are so small they’re hard for us to see.” My prayer is that He opens our eyes to recognize even the smallest ways He is miraculously at work. And, of course, I pray we would experience the ultimate miracle of physical healing in my body very soon.

5. MUSIC – I am so thankful to know the music I enjoy on a daily basis will also be a part of eternity. This year particularly, music has provided the peace, the hope and the much-needed perspective when even scripture couldn’t soothe my anger, my questions & my fears. Music has a way to express what words alone cannot. I don’t know what I’d do without Pandora One and the many, many albums you have shared with me on this journey. We still go to sleep listening to music.

4. OUR BEAUTIFUL “WARRIORS” – I never knew 2013 would bring with it numerous & unexpected friendships (and prayer warriors) through the universal body of Christ. Only time will tell of the impact your worn-out knees & faith-filled petitions have made on our behalf. I pray one day on this earth, I can tell each one of you “thank you” and give you a heartfelt embrace in-person. Thank you for helping us persevere in fleshing out Romans 12:12, “Be joyful in hope, patient in affliction, faithful in prayer.” We love you!

3.  OUR PARENTS, SIBLINGS & EXTENDED FAMILY – Sometimes I think God allowed this disease into our lives because He knew we wouldn’t face it alone. We both have unbelievable families supporting us. We are well aware others are not as fortunate. Our amazing families are an undeserved gift from the Father. Without them, the fight would seem far greater. We are only as strong as those holding us up. Thankfully, our families have the strength of Sampson, the heart of David, the tenacity of Paul and the faith of Abraham.
--I also want to include my hubby in this section. I knew I would have too much to say about him which is why he deserved an exclusive post on Feb. 14th (see My Good Man).

2. THE JOY OF ALEXA HOPE – What can I say about our “hope fulfilled” that you don’t already know. She is the joy of our lives, our gift from above and the biggest reason I pray numerous times a day for deliverance from this disease. She fills our days with laughter, adventures and exhaustion, but I wouldn’t have it any other way. Every time I see her contagious smile or watch her fall asleep, I thank God. This year has been especially meaningful as we have watched her grow physically, emotionally and intellectually. No doubt, the onset of this diagnosis was exceedingly difficult for our family of three, especially for Alexa. So much she had to process in her little three-year-old brain (and so much we pray she never does). It seemed so unfair to watch her wrap her mind around all that was and is still happening, but I am overwhelmed by her capacity to look beyond Mommy’s limitations and love me without condition (and expects me to do everything I used to). There is no doubt, we love her unconditionally as well and pray God uses this season to shape her into an immovable force for Jesus.

1. JESUS –  We are learning so much on this journey. Even when I have been so angry and so confused by what is happening, I know at the end of this – the only hope we have is Jesus. Although I don’t always want to believe it, He is enough because what He did on the cross is enough. Ultimately, my hope, my peace, my strength, my healing and my deliverance come from Him. In a book I read this summer, the author challenged the reader to close your eyes and picture Jesus speaking peace to your heart (John 14:27). There have been many nights I have imagined His eyes of loving compassion gazing deep into my overwhelmed soul and doing just that. I am so thankful the peace Jesus gives is truly beyond comprehension and is available at any moment for you and for me. We simply have to ask Him and receive it.

Oh Lord, thank you for the gift of a godly spouse. Thank you for our parents and grandparents who have shown us what God-centered, God-glorifying marriages look like. In your mercy, would you graciously give our little family many more years on this earth to walk with You and make Your name known to those around us. We love you. In Your Name we boldly pray. Amen.

 

* All photos lovingly captured by Shannon Ho Photography