Striving Together In Prayer

I appeal to you brothers, by our Lord Jesus Christ and by the love of the Spirit, to strive together with  me in your prayers to God on my [our] behalf…”

Romans 15:30

Tomorrow morning, Chris and I will head into the Avera infusion center for his 21st treatment. This is the last treatment before his next scan on November 14. If we knew the scan would reveal great results and allow Chris to stop the chemo, I’d feel infinitely better about drilling down for another week. But we just don’t know how God intends to write this story. We have no doubt He’s able to use Chris’s treatment plan, He’s able to do a miracle–but we don’t know His plan or His timeline. Our lives belong to Him to use and spend as He desires. At the risk of sounding whiny, I’m finding myself feeling homesick, threadbare and weary.

Yet I’m also feeling cared for and strengthened. Last Friday, despite the day being especially hard for him, Chris declared that we needed to have someone come out to visit to encourage and pour into me. Just his desire to take care of me went a long way to lift my spirits. Yet for some reason, I felt prompted to say, let’s just pray and see if God brings someone to us tomorrow, and if not we’ll make some calls on Sunday. So that’s what we did. The next morning, Saturday, I got a voicemail from my dad saying that he and my mom wanted to make a plan to come out in a week or two. I haven’t seen my parents in a few months, and we haven’t talked about a visit in weeks. Needless to say, his timely voicemail brought instant tears.

This morning I read the parable of the Good Samaritan (read here if you’re unfamiliar with this story) and immediately identified with the man lying on the side of the road, needy and utterly dependent on the compassionate care of the Samaritan. I felt God saying, Just let me take care of you. Trust me. My compassion and love for you far surpass that of the Samaritan for the stranger. These words are balm for my heart…and I also struggle to trust and believe them because I know the pain and suffering God sometimes allows even as He generously loves.

So I’m asking you, praying friends and family, to continue to pray for us–for our hearts to be courageous, strengthened and faithful as we wait and anticipate another scan. Please “strive together” with us in prayer, as it says in Romans 15. We need you. I have no doubt God will take care of us and that He is good, all the time. We want to pray with expectation and faith in His unchanging goodness. Will you also pray that God uses the treatment to effectively fight this cancer? We’d love to get really good results from this next scan.

In fact, I’m a little hesitant to share this last prayer request because right now it feels so outlandish, remote and personal. For several weeks now I’ve been praying that Chris would be able to go skiing this winter. I’m not talking ski mountaineering racing or skiing the Grand Teton after boot packing and skinning uphill like he did a year and a half ago, I’m just asking for some good runs on a groomer. For those of you who know Christopher, you know how much life and joy he gets from outdoor adventure, especially skiing. Obviously, this is not a need, it’s a want. But I believe God cares about those too, so I’m asking.

Lastly, this past week brought some extra smiles for us as I spent significantly more time than I’d planned making a “littlest bird in the nest” costume for Pippa…and enjoyed every minute (hour?!!) of it! She was definitely not the happiest bird in the nest when I first put it on her, but fortunately, she warmed up to it later in the day and seemed to enjoy trucking up and down the sidewalks and darting into people’s living rooms when they first opened the door, haha! We have a handful of retired neighbors who especially loved having her visit, and we enjoyed getting to know them better. Somehow, getting to create something and then watching our sweet little bird make neighbors smile significantly lifted my spirits. I’m thankful…for each of you who have been praying, sending emails, texts and love, for so many profound and great things God is and does for me, and also for felt and glue and cute babies : )!!

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Saddest bird in the nest!

Clearly she takes “birding” very seriously, haha!

 

 

Snow Days in October

Despite glorious fall colors and a leaf-crunching walk with Pippa today, it seemed fitting to read the book Snow Day! to her before her nap. Earlier this morning, Chris and I arrived at the Avera Infusion Center, dragging our feet more than usual as Chris was still weary from last week’s infusion. This past week was a hard one. Muscle aches, fatigue and a few other symptoms persisted and made his usual “bounce back” feel impossibly elusive. His labs this morning reported a platelet count of 100, the cut-off for infusion. The nurse gave us the option of going forward anyway even though a count of just one point lower would have made an infusion an automatic no-go. Should we drill down and push through another hard week? Put on our game faces and fight this thing anyway? What if the extra week is the straw that breaks the cancer-camel’s back?

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Chris and I recently read the book God’s Smuggler by Brother Andrew. If you’re not familiar with the story, it’s the biography of a man best known for smuggling Bibles behind the Iron Curtain during the Cold War. After Chris and I finished the book, we talked about how inspiring it was, but wondered how we might apply some of these elements of faith to our own lives. Our circumstances certainly couldn’t be more different. One aspect of his story stood out: he had a habit of “hiding” the Bibles in relatively easy-to-find places in his car, or even leaving them out on the seat next to him. And then he would pray that God would blind the eyes of the police who inspected the cars at the border. This way, he suggested, it would be obvious that it was God who miraculously brought the Bibles in and not his own ingenuity. In all his years of smuggling he was never caught.

A week or so ago, our doctor recommended that we take some weeks off of chemo (two on, one off). At first we rejected the idea, feeling driven to fight this cancer as hard as possible, do more than the recommended amount, go longer, go harder. We considered switching to a more aggressive doctor. And then our previous conversation came back to us–here was our opportunity to take a step of faith. If Chris gets better, it will be entirely God’s doing, not the fierceness of our fight. We will do our part as best we can, and we feel fortunate to have great care and an “outside the box and aggressive” treatment plan, but we know that these efforts are only as effective as God makes them. And He is not limited by a couple weeks off. So we may not be smuggling Bibles by faith into closed countries, but we are, by faith, relinquishing our roles as “fighters” and trusting God to use the people and plan He’s put in place to fight for us.

Which brings me back to today. We were again faced with a decision between going forward with treatment this week, even though it would have probably knocked Chris’s body down even more, or trusting God with Chris’s care and taking the needed week off. Of course the week off sounded good, but we struggle to let go of the need to control this fight and do as much as we can. We asked the nurse for a minute to decide and prayed. God, be our Counselor and our best Doctor and clear our minds to make a decision not influenced by fear or control. We opted for the Snow Day from chemo. A few minutes later, my mom texted and said she’d been praying Psalm 16:7-11 for us this morning. The first line of those verses reads,

“I bless the Lord who gives me counsel.”

As I read these words I marveled again at how God reminds us that He’s real, involved, and cares. My mom didn’t know we were specifically praying for God to be our counselor, but God knew it’s what we needed most this morning. Thanks, Mom, for listening and for praying :).

Next week was supposed to be Chris’s week off, but now we’re planning to resume treatment then. Please pray his blood counts and overall well-being improves during this break. In the meantime, we will continue to enjoy the spectacular fall leaves and make the most of our extended chemo Snow Day!

Catching Up

If you’ve ever tried sweeping all the dog hair into the dust pan, then you have an idea of what it’s like to attempt a blog post after over a month of silence. Try as you might, the elusive hair puffs and floats away, resettling where you just swept moments ago. It’s impossible to capture it all without spending an inordinate amount of time trying. Similarly, every time I think about sitting down to write an update, my thoughts scatter in all directions–from the medical to the personal to the spiritual to the mundane. I’ve resigned myself to the impossibility of communicating it all in one update, and am resolved (October 15 is the new January 1) to just update more often. But for today, I’ll pass on some snapshot updates.

Medical: This past Thursday was Chris’s 19th infusion of chemotherapy and 6th of immunotherapy. Currently we’re on a two weeks on, one week off schedule. We’ll continue this plan for three more infusions and likely have another scan sometime mid-November. Chris is enduring and persevering well. Each week it’s felt harder for him to bounce back, and he’s developed a greater underlying fatigue and sensitive stomach. And yet we both continue to remember the many reasons we have to be grateful:

  • He’s still never developed many “inevitable” side effects. While the chemo has taken a toll on Chris’s overall strength, I am continually amazed by the strength God gave Chris, both physically and internally. He has endured a lot with both grace and grit. He is strong. 
  • Chris has never had to miss an infusion because he wasn’t able to do it (i.e. white blood counts too low, too nauseated, etc.). We’ve had a few breaks because we’ve chosen to take them and had the assurance of both doctors that the breaks wouldn’t impact the effectiveness of the treatment. This fact is great for morale.
  • Aside from some initial weight we both lost because we started eating healthier, Chris hasn’t lost any weight. I think I still prefer the white flour and sugar version of us both (haha!) but I’m thankful every week for a steady, healthy weight.
  • Aside from on and off muscle aches in his back (which the doctor believes could be related to continued healing from before and low magnesium due to chemo), Chris has had no pain. Pain is an indicator the cancer could be growing or spreading, so no pain–especially no new pain–is encouraging.
  • Chris’s labs continue to show normal, healthy liver function. The blood test and scan in November will give a better indication of what’s happening, but these little signs are also encouraging…better than the alternative!

What we’re praying for, medically:

  • That Chris will be able to go through with the next three infusions before the scan. In other words, we’re praying his white blood cells, platelets, and magnesium levels will all be high enough (the chemo knocks them all way down and the only way to really get them up is to stop chemo).
  • For the treatment to be effective. Our hope is that the November scan results will allow Chris to switch to a maintenance treatment plan, which would mean he’d continue immunotherapy every three weeks and the daily Cabozantinib pill but could stop the chemotherapy. The chemo is what really knocks him down every week and has cumulatively hit him pretty hard. We’d love for his body to have a chance to rebuild.
  • That his back will improve. Right now it’s usually worst around treatment days and then sometimes wakes him up early in the morning (i.e. five or six a.m.). We’re still trying to troubleshoot with our bed…memory foam, different mattresses, etc.
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Someone discovered toilet paper!!

A Week in the Life of the Lawrences:

Occasionally people have asked what exactly we’re doing…what is a typical week like. We’ve gotten into a sort of rhythm, so here it is:

Thursday: Infusion day. Chris’s mom, Marcia, or one of Pippa’s aunts, Anne or Diana, come over to hang out with Pippa so Chris and I can head to the Avera Cancer Institute for anywhere between 4-7 hours. Some weeks we tack on a check-in appointment with the doctor or have to wait for the labs to come in or some other delay keeps us there longer than other weeks. The actual infusion takes 3-4 hours. Then we come home, Chris settles in on the couch and we eat Chinese take-out for dinner. We’ve learned that chemo has a way of permanently ruining Chris’s taste for any foods eaten close to infusion, and since neither of us are especially attached to Chinese (Thai is our favorite!), we’re okay with it being on the forever-hate list on non-chemo days.

Friday: Recovery day. Chris usually goes for a walk in the morning while he still feels okayish, and then the rest of the day he sleeps or fights the queasiness on the couch with either t.v. or an audible book. The nausea meds are especially helpful and have kept him from having to skip any meals still.

Saturday: Another recovery day. Some weeks Chris begins to feel better by Saturday, other weeks it’s another nap/fight the nausea day.

Sunday: Hump day. Generally by Sunday Chris begins to feel better, though he may still take an afternoon nap. In our efforts to keep Chris healthy we haven’t been attending church and risking the collective germs and nursery funk Pippa (and we) would be exposed to. So far it’s worked; Chris has stayed healthy and cold-free. Instead, we usually get Pippa settled for a nap and listen to a sermon online and then spend some time praying together. In the afternoon we often spend time with family, go to a park or watch football.

Monday-Wednesday: Usually Chris feels more normal these days and heads into the office building his dad and brother share. They have an extra office he can use, so he uses these days to cram in a week’s worth of Lifelines work and general life stuff (i.e. bills, insurance claims, car maintenance, etc.)

Other than Thursdays when I’m with Chris for the infusion, my days are mostly spent taking care of Christopher and Pippa. Since we’ve been trying to avoid most refined flours, sugar, and eating less dairy, I’ve spent a fair amount of time researching and learning new recipes. We’re also all three at home for meals most days, so there’s prep and clean up three times a day.  Of course the Littlest Bird in the Nest (see Instagram #littlestbirdinthenest) gets a lot of my attention–frequent trips to the park that’s just a few houses down from us, library visits (we’re at 600 of the 1000 Books Before Kindergarten program here in Sioux Falls : ) ), and lots of time climbing on, over and around the furniture. At first I struggled with the volume of mundane tasks that fill the day–feeling guilty I wasn’t “doing more.” But then I finally recognized the obvious that my primary job is my family right now, so these tasks weren’t keeping me from more important things, they are the most important things. I’m thankful to have the freedom to be with these two so much.

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Chris and Pippa and I enjoyed an incredible fall hike last weekend.

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While we missed the aspens of CO, these watercolor maple leaves were spectacular!

Pippa:

Speaking of the Littlest Bird in the Nest, I have to give a little update on her, our constant source of sunshine. She continues to infuse pure, deeply felt joy into our lives. Here are a few of the things we enjoy most about her:

  • She’s curious and tough: this summer, the first time she encountered a sprinkler, it sprayed right in her face when she approached it. She neither cried nor giggled, just paused, and then relentlessly marched towards the center, getting soaked and no doubt cold as there was a breeze and an overcast sky. Wearing a typically serious expression, she stuck it out with that sprinkler a good 10-15 minutes, going in and out, sprayed in the face, before I finally couldn’t take it anymore and took her out and put her in dry clothes.
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Not only does she cry when I take her out of the swing, but now she cries when I stop pushing her and the swing starts slowing down!

  • It’s obvious she has “old” parents as she now grunts every time she climbs up on something, picks up something “heavy,” or gets lifted out of her crib. Wonder where she learned that, haha!
  • She loves books. She warms my soul every time she settles into the nest of blankets and pillows I lay out next to her bag of library books, and she spends anywhere from 5-45 minutes pulling books out, looking at the pictures and “reading.” The fact that the books are upside down half the time just makes me smile. This is often our morning ritual, and it gives me time to read then too.

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  • She’s like a puppy only way better. I often remark that having a 15-month-old is a lot like having a puppy because we find ourselves saying things like “no,” “come,” or “give it to Mama/Dada” all day long. I’ve also spent a fair amount of time teaching her how to go on walks with me to the park: to stay with me on the sidewalk, hold my hand crossing the street, and not chase after other kids or dogs. The first few times we went, she wanted to go zinging off in every direction and cried and cried in the middle of the street because she had to hold my hand. Now she’s practically a pro and trots all the way to playground without protest. Most of the time : ).
  • She’s fearless (sometimes).  A few weeks ago, when two neighbor dogs we didn’t realize were out started barking loudly and jumping up on the chain link fence about 15 feet away from us, Pippa was of course startled. I saw fear sweep across her face. But again, rather than crying, I saw her curl her hands into fists at her side and she started “Woo-woo-ing” back at them. I admit, I was proud of the fierceness I saw in her. Not too many days later, a train passing by the park and blasting its horn did make her cry, so she’s not always a super-hero : ).

Living Lists

I made a to-do list for the first time in over four months this week. This small task provided an enormous sense of reclaimed normalcy after so much upheaval. Other little shoots of life have begun to return too, even as we continue to walk this assigned path. Our days and weeks have taken on a new rhythm and we’ve felt the relief of a more settled existence. At times the painful realities of our current story squeeze and dig and take our breath away, and there are tears and the need to pause to express emotions and to pray.

One of those moments came yesterday as I was cleaning up lunch dishes and overheard Chris on the phone with a guy on our work team in Longmont. They’re gearing up for the fall semester and things are going well…which is why I felt the sting of unexpected tears. I wish we were there; I wish I was making plans to have students over for dinner and trying to work out how Pippa and I could join the team on some trips (maybe unrealistically). If I let myself continue making an I wish list, it could go on a long time. In that very mundane moment of washing dishes and picking up bits of carrot Pippa had so delicately dropped to the floor earlier, I had a choice: continue diving headlong into the hole of I wish despair or heeding the quiet call of the Good Shepherd, “Just trust me; trust my steadfast love.” 

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My sister Emily sent me this image; it’s been the background on my phone ever since. 

I’m still, daily, learning what it means to trust this Shepherd. It’s so easy for the theoretical to remain just that–theoretical. But when the tears are literal and those tears and emotions and fears literally paralyze my ability to get daily tasks done or absorb the normal inconveniences a baby brings, or cause me to become irritable with my husband, I desperately need that trust to become literal too, releasing me from the power fear and despair have to pollute and sour my day and relationships.

One practical way I’ve learned to trust God’s steadfast love is to simply look for it and acknowledge it as often as possible. The more I see it, the easier it is to recognize, and the easier it becomes to count on–to count on Him. Since this chapter began in March, we’ve experienced his love countless ways. So I want to share another list–a He Loves Me List.

But before I do, let me clarify that God’s love was most profoundly expressed when Jesus took on human flesh to walk in our shoes, then later died in our place and defeated death by coming back to life. The Cross is where I begin when I consider how to encourage my heart to trust him. I also believe that he continues to demonstrate his love in smaller, personal ways–often tangible gifts that remind me that he sees me, knows me and delights in me and in loving me. Remembering them is so very life-giving!

So here it is, part of my He Loves Me List:

  1. When we first came to Sioux Falls, Pippa was still recovering from eating issues related to a tongue tie. For months she’d been waking up a lot at night as a result. Soon she’d put on weight and was back to normal; she didn’t need those nighttime feedings anymore. Chris was about to begin treatment and, as my mom pointed out, uninterrupted sleep would be more essential than ever. I dreaded letting her cry, but knew it was time. The night we decided to let her cry, I sent a “please pray” text to my mom and sisters, and that very night Pippa slept through the night without a tear. And the next night. And the next. We’ve had some setbacks of course as sickness and disrupted schedules have come up, but overall, she’s a great night sleeper now. What a tangible, sweet answer to prayer and reminder that God cares about these “little” things!
  2. Early on, nights were the hardest for me. I was often awake with Pippa or just unable to sleep, and my thoughts and emotions would easily go to dark places. Seven times different people texted me within 30 minutes or less of my waking to let me know they were praying or thinking of me or had a verse for me. The first time or two it happened I chalked it up to coincidence. But over the span of a few months, it kept happening–at all hours of the night and with different people. Once when it was late at night and I was feeling especially low I began texting a friend I hadn’t talked to in a few weeks, and before I’d even finished writing the text and hit send, I got an unsolicited, super-encouraging text from her addressing some of the very things I was texting her to pray about. Each time I got a middle-of-the-night text I felt God saying, I see you; I care about you.
  3. The first 3.5 months we were in Sioux Falls we lived with Chris’s parents. They are generous, easy to live with and kind. Their home is spacious, and frankly we were so decimated we needed their company, care and support. As we’ve regained our footing, though, we felt like we would benefit from being independent adults again in our own space. Just a few weeks after we got here, Chris’s grandparents moved from their home of over 50 years into assisted living, and his grandpa offered us the use of their home, rent-free (an incredible gift since we still have our house in Longmont!). So here we are, living in their home, which “happens” to be just a few blocks away from the hospital and was already furnished and mostly stocked.
  4. Just before we moved to Chris’s grandparents’ house, I was on Amazon looking at highchairs for Pippa. I’d started looking at them before we left Longmont, but now it was finally time to pull the trigger. After choosing one, I was about to buy it when Chris walked in the room and showed me a text from a family friend offering to loan us a highchair they weren’t using. Oh, and a crib. And a baby pool. And some toys. God’s timing and provision through these generous friends left me stunned!
  5. God’s love has also been so sweetly, beautifully and abundantly expressed through the love and kindness of friends who’ve prayed intentionally, brought meals, loaned us a stroller, sent thoughtful cards, emails and texts, gift cards, financial gifts, care packages, tea, cute new t-shirts because most of my summer clothes were still in CO, clothes and toys for Pippa, essential oils, books, coloring books, bought us a Vitamix to help with our new diet and Chris’s protein/veggie shakes, and offered and/or took family photos for us. A neighbor in Longmont–a professional quilter–is making us the quilt I’ve wanted since we got married but never actually had made; strangers we’ve never met heard our story and are taking care of our lawn in Longmont for free. So much thought, love and care. You all humble us, keep us afloat and are a balm for our souls. Thank you. 
  6. A few weeks ago, Pippa got hand, foot and mouth disease. Typically a childhood illness, this particular strain was nasty and contagious, infecting Chris’s cousin, the cousin’s fiancee, myself, my sister Emily, and her two boys (she and Jeremy, my brother-in-law, had come out to visit). Pippa and I were down for the count with fevers, horrible sore throats, and hot spots and blisters all over our hands and feet. Obviously we were very concerned about Chris coming down with it too and having to delay treatment while he recovered. His weekly labs have shown that his immune system, while okay enough to continue chemo, is definitely diminished. We tried to prevent Chris from further exposure by obsessive hand-washing and having him sleep at his parents’ house…and we prayed. And you know what? Chris got it. But what did he get? No fever. No sore throat. Only 3-4 small blisters (by comparison I probably had 30-40!). Perhaps it’s evidence of the immunotherapy at work. Perhaps it was God’s miraculous intervention. Either way, we are grateful!
  7. The night before Chris’s ninth round of chemo, Chris and I discovered we’d been praying essentially the same thing for several days–that we would experience God’s love and delight in deeper, more personal ways (despite the above list, it’s been easy to doubt God’s heart for us!). The next morning, Chris decided we should order cruiser bikes. We knew he had pro deals that would give him a great price on a bike, but we were certain that my application for a particular pro deal would be denied because I don’t have the certifications it seemed I needed. However, within hours we heard I had been approved, which meant we could both get bikes for half the retail price. As I type this, I can feel the tears welling up again because of God’s kind mercy to and delight in us through this purchase. Doctors assured us early on that Chris would experience some terrible side effects that would no doubt keep him couch-bound. But other than fatigue, he simply hasn’t had them! So here we were, getting to recapture a part of our lives that we’ve missed desperately. Cruising on a level bike path may not be summiting a 14,000 foot peak or guiding a raft through class-four rapids, but it’s active and fun and gets our muscles moving. My heart felt so loved this past Tuesday as we rode our bikes downtown and sipped our drinks on the patio of a coffee shop. 20160802_104102
  8. I can’t help but remember God’s provision of the immunotherapy drug (Keytruda) and genomic-targeted drug (Cabozantinib). The doctor told us Chris only had a 50/50 chance of getting them. We are so grateful, and we feel for so many others who are doing whatever they can to have access to them.

At times my skeptical mind looks at a list like this and thinks, “I know people who aren’t Christians who experience little miracles and gifts like this too…but rather than attributing it to God, they chalk it up to The Universe, or karma, or fate, or some rational explanation. What if they’re right?” Somehow others’ similar experiences, apart from God, has caused me to question my confidence that my experiences are gifts from a who God sees and is lovingly involved. But then I had a cringeworthy “duh” moment. This God that I know and love IS love, the very essence of it; his delight in loving and giving has never been dependent on acknowledgement or reciprocation. The rain falls on the just and the unjust. While we were yet sinners Christ died for us. So why do I question when anyone and everyone experiences these beautiful gifts? My view of God and his love has been far too small.

Today Chris has his 11th round of chemo and 4th round of immunotherapy. In three weeks, on August 25th, he’ll have his first CT scan since beginning treatment. Obviously we’d love good medical news. But today, and until then, our prayer is from Psalm 21:6b-7: 

“…You make him glad with the joy of your presence. For the king trusts in the Lord, and through the steadfast love of the Most High he shall not be moved.”

Our desire is to experience unshakable joy that does not depend on healthy scans or getting to live the life we planned. As we’ve seen, these things can disappear in a moment. God, help us to learn to trust you–to stand unmoved in your steadfast love. God’s gifts are sweet, as evidenced by the list above. But it’s Him we want most. As Chris said to me earlier today, “What good is physical life without spiritual life?”

Please pray that he’ll fill us to overflowing with the abundant life Jesus promised in John 10:10 – “The thief comes only to steal, kill and destroy. I came that they may have life and have it abundantly.” 

Celebrating Elliott

Dear Elliott,

Today is your second birthday–the second anniversary of when we had to entrust you to our Good Shepherd’s care and postpone the joy of discovering who you are. Even so, today your daddy and I celebrated your day and thought and talked about you a lot. In the past two years we’ve certainly spent a lot of time grieving over you–and have even felt that grief acutely in recent days. We’ve also learned, though, that true grief can’t be forced. It comes on its own and demands attention. But instead, today was about the ways that you, Elliott Nathan, are our gift.

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Did you know that your middle name means gift of God? One of the sweetest gifts I’ve ever been given was the profound miracle of being transformed into a mother, with a heart full to overflowing with a mother’s love. And you, Elliott, gave me that. The night you were born we were still in shock, and I was affected by painkillers. I knew I loved you, but I knew there was more. The only prayer I could think to pray was that God would give me a mother’s love, even if it meant my heart would break. The next morning, on the Fourth of July, your daddy and I held you for the last time and marveled at your sweetness, your perfection, and in those moments God answered my prayer for us both. Our hearts broke, but we loved you with a love we’d never known before. Over time, the sharpness of the pain we felt then has subsided, but like silver refined by fire, our love for you has remained. What a treasure it is to us.

Did you know that our first gift to you was your name? The week before you were born, your dad decided it was time to name you. We’d talked about names for a long time, and Elliott had been my favorite name for years. And then your dad loved it too. Elliott means both brave and true and Jehovah is God. We were excited about life with a little boy named Elliott. So when we learned you had already gone to be with Jesus, we questioned whether we should save the name for another boy later. We didn’t consider this for too long, though. We both knew we wouldn’t have more opportunities to give you gifts in the future, so we decided to give you the gift of our far and away favorite name. We have no regrets. It’s a name we’re proud of, and befitting of you, the son we’ll always be proud of. Besides, your name is a reminder to us that even though we’ll always wish we had both our Elliott and our Pippa, Jehovah is still God and we trust him.

The name Nathan was really a gift from your Papa, my dad. The morning you were born, before we knew anything was wrong, my dad felt like God led him to John 1:47-49 about when Jesus spoke to Nathaniel, a man “in whom was no guile.” He thought perhaps Nathaniel or Nathan might be a fitting name for you. Your dad and I still hadn’t found a middle name we loved, so we thought it was a sweet gift of God to give us the perfect one at just the right time.

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So today, little Elliott, to celebrate your day, your dad and I went to Itasca State Park here in Minnesota, rented bikes, and went on a beautiful, 9-10 mile ride through the woods. It was the first time in months that we were able to do something physically active like this together, and your dad still hasn’t had the really nasty side effects we heard were inevitable, so this bike ride was really a celebration. Even as we walk through another dark valley, God’s grace is enough and his generosity abundant.

We miss you Elliott, but we know we’ll see you again, and we love you so much!

 

 

The Littlest Bird in the Nest Turns One

“Chris, what if she’s weird…or homely…or dumb as a rock…or we just don’t like her?” I worried out loud to my husband while I was pregnant with our second, Pippa Kate. “She doesn’t have to be super model gorgeous (in fact, I’d rather spare her that potential burden), or a genius or anything, but I hope that she’s at least normal and cute enough.” These were among my more shallow fears in a pregnancy plagued by battles with fear.

More often, I found myself asking God just for help to trust him, to not succumb to fear and anxiety, and to give me courage to step out and plan and prepare for the arrival of a healthy baby. After losing Elliott near the end of my pregnancy just months earlier, I was on edge. It’s a wonder she didn’t come out twitching or half frozen considering how frequently I’d down large amounts of either sugar or ice water to get her to move around and reassure me that she was still okay.

Just three months into the pregnancy, on a dark January night, Chris and I had our own little gender reveal party. I’d made an origami blue fish for a boy and a floral origami crane for a girl, and then asked our OB nurse Marguerite to put the correct gender in a gift bag for us to open together later that night. We were both sure we were having another boy. I knew another boy would never replace our Elliott Nathan, but I just felt like another boy was on the way. We closed our eyes, counted to three, and flipped the bag upside down over an ottoman.

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Upright and staring right at us was this cheeky little bird. I looked at Chris and burst into tears. My heart ached with unexpected disappointment and sadness, and of course a layer of guilt that settled in too. It’s not often that I feel God speaking clearly and unmistakably. But in that moment, I sensed him say very gently, “You have no idea how much joy this little girl is going to bring you.”

Later, I realized that my tears weren’t about not wanting a girl, but about unfinished grief over Elliott. While another boy wouldn’t bring him back, we would get to resume our dreams of parenting a boy, unpack all the cute boy things we’d had to store away, and somehow pick up where we’d left off. Now all those bins would stay in storage, and the particular dreams we’d grown attached to would have to be grieved once and for all.  A girl meant starting from scratch.

And God in his wisdom knew that this was just what we needed–what our next child needed. Her own place in our family; her own identity, not as an Elliott fill-in, which perhaps we might have done with another boy? I don’t know. But what I do know is that God was right. Abundantly so!

For two days in the hospital after Pippa was born we even debated giving her the middle name Joy. Ultimately, we decided against it because we felt like we were projecting onto her what we wanted her to provide, and that somehow her name would become an extension of our story with Elliott. We wanted to protect her singular place in our lives and her uniqueness apart from her siblings. Besides, Kate just seemed to suit her more anyway.

Even so, she has been nothing but joy from the start. Easy going. Adaptable. Content. Sweet. With these stunning blue eyes that one stranger in the airport described as “welcoming.” Just a few weeks in, Chris exclaimed, “Babies are just so FUN!” I always assumed that the joys of parenting really started when babies got to about two and they said funny things and had personalities. But with this little Pip, I haven’t wanted the baby stage to end. We’ve soaked it up and enjoyed each little phase.

Tuesday this week we celebrated her first birthday with family at Palisades State Park here in South Dakota. Afternoon clouds and shady trees kept the heat at bay as we watched her lean face first into her first little cake, play with the duck puppet Chris gave her, and crawl from family member to family member while Chris recounted some of the ways God has blessed us and restored our joy in the last year. In light of our current circumstances, it was good for us to pause and remember.

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Today is Pippa’s actual birthday. She’s a speed crawler, pulls up on anything in reach, goes up and down stairs, loves feeding herself so much she’s surprised us by willingly shoving even tuna fish, mustard, Mediterranean and Indian food down the hatch (but her favorite is probably cheese, haha!), and she loves to squish her face in soft, cozy things. She stops crying when she hears music–even if it’s Jimmy Buffet’s “Margaritaville”or some other twangy country song. But anything with a strong beat really gets her little head bopping and legs bouncing. Some family members swear she says “hi,” but time will tell in my opinion. There have even been bribes of “free college” if she says Dada by the end of the day today. I’m 100% sure I’ve heard her say Dada something like 10 times already, haha. But I guess I might have mixed motives! Oh, and she’s begun expressing some very definite opinions these days. Our work is cut out for us…but we love it. She is strong, independent, sweet, and the delight of our hearts. We love our Pippa Kate deeply!

Getting Drenched

Early one morning last week, Chris and I braved a chilly breeze and overcast skies and took the Sea Ray down to the far end of Elbow Lake in hopes of spotting and photographing a bald eagle in his nest. We were not disappointed. The engineering required to build such a massive eyrie is awe-inspiring, and the eagle himself looked as if he were posing for a patriotic post card.

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Over a long weekend, Chris and I, his parents and our 12-year-old nephew Isaac had been soaking in slow hours of lake-life in northern Minnesota where Chris’s family has had a cabin for the past 25 years. Elbow Lake is remote, the nearest town of 3,000 people is 45 minutes away. Dense, hilly forests of birch and various kinds of pine grow right up to the water’s edge, making us feel tucked in and pleasantly secluded. We spent hours reading, bushwhacking through overgrown trails on a four-wheeler, and listening to the loons as we drifted on the water in the boat.

One afternoon I asked Isaac to show me how to drive the little “tin can,” an aluminum boat the size of a row boat with a small motor on it. Despite his truly admirable efforts as my teacher, I nearly flung him out of the boat when, trying to avoid an oncoming pontoon, I inadvertently accelerated and spun the boat out of control. He was gracious to ask me on our way back to the house, “Soooo, do you want this to go down in history….or for it to go away?” I told him he could tell the story. Which he has. As often as possible. Haha!

Times of prayer and reflecting on Scripture also encouraged our hearts as we intentionally “put our troubles on the shelf” for a few days, as Chris described it. It’s the first real time of rest and rejuvenation we’ve had since we began this journey in March, and we are thankful.

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I know this picture is blurry, but I kinda like the dreamy feel to it 🙂

Following Chris’s discharge from the hospital on Thursday, June 3rd, we skipped a week of chemotherapy to focus instead on a round (five days) of radiation to treat the spot in his hip that caused the painful muscle spasms that sent him to the hospital. However, while chemo and radiation don’t mix well, after several phone calls I discovered that Chris could still get the first round of immunotherapy (Keytruda) done on Friday, June 4th after his radiation appointment. We’ve been so eager to get this part of the treatment trifecta started because it’s the one we’ve heard the most promising news about. I’ve had a lot of people ask about the treatment he’s receiving, so here’s my layman’s explanation of the three-pronged approach our oncologists have prescribed for Christopher:

  • Traditional chemotherapy for bile duct cancer (Cisplatin): Given in three-hour infusions once a week for nine weeks. This is a general blast that wipes out both good and bad fast-growing cells, kind of a one-size-fits-all approach. Side effects for Chris have been manageable. Anti-nausea meds have enabled him to eat well, and naps on days three and four have mitigated the fatigue.
  • Immunotherapy (Keytruda): Given once every three weeks in an infusion alongside the Cisplatin chemotherapy. One doctor explained that this drug “takes the gloves off the immune system and super-charges it” so that the body is able to attack the cancer itself more effectively. It works best against genetically hyper-mutated tumors, which is true of Chris’s. It really doesn’t have any side effects.
  • Insert long medical name I don’t understand 🙂 (Cabozantinib): Neither chemo nor immunotherapy, this drug is taken daily in pill form and is designed to attack the specific genetic mutation the doctor believes is driving Chris’s tumor. Chris began taking this drug this week, and side effects could become rough by days 10-14. With chemo, after a few days the side effects diminish before the next round starts, but since this is taken daily, Chris may not get much of a reprieve.

Chris had his third round of chemo on Thursday last week, and his fourth this past Thursday (June 16th). He’ll have his second dose of immunotherapy with chemo next week. He’s gotten into a good rhythm with this part of the treatment, and now we’re praying for strength, courage and wisdom as he continues this last, but key, part of the treatment. If the side effects become more than he can manage (i.e. he begins to lose weight, the nausea is too overwhelming, etc.) then the doctor will reduce the size or frequency of the dosage. While this might be okay, we’d really love for him to be able to take as much as possible for as long as possible to attack this cancer full force.

As we face frightening medical uncertainty, we’ve spent a lot of time considering what it means to have faith–to be people of faith–in these circumstances.

Early on, I felt completely disoriented spiritually and emotionally. Each day brought new assaults on our hearts–calling our parents with the news, the first time we walked through doors marked Oncology, scan results, a diagnosis, uprooting from our home literally overnight and saying goodbye in a moment to our summer plans. While the initial shock has been replaced by the regularity of our new normal life of treatment and daily life in Sioux Falls, I still find myself sometimes asking the same questions.

What do I even pray for? How do I relate to God when what I’m feeling and experiencing is all so new and overwhelming? What do I do with this tangled mess of emotion that’s clogging my mind and sitting like a rock in my heart? Do I have to accept “worst case scenario” in order to have any sort of peace? Or should I try to muster up every shred of faith I have and believe God will heal Chris no matter what?

“Elizabeth, you have one job right now,” my mom stated calmly during a phone conversation where I unloaded the aforementioned pile of questions. “And that is to fix your eyes on Jesus, like Peter did when he stepped out of the boat.”

The story my mom referenced [Matthew 14: 22-33] was one where Jesus’ disciples got caught in a dangerous storm while sailing across a lake. Jesus walked towards them on the water, and Peter, a typically impulsive man of action, says, “If it’s really you, command me to come to you on the water.” Jesus simply replies, “Come.” So Peter steps out of the boat–a seemingly safer place to be in a storm than out in the water–and onto the thrashing waves. He “walked on water and came to Jesus.” He got all the way to Jesus…but then he shifts his eyes to the wind and panics. He starts to sink and Jesus rescues him.

Like Peter, we’ve felt like Jesus is beckoning us to step out of a life that felt safe and secure and walk in a place as uncertain as a stormy sea. We believe he’s called us to cling to an optimistic faith, fixing our eyes on him (beyond even what we hope he will do)–because he’s a healer; he’s the Resurrection and the Life; he’s our Good Shepherd. Sometimes the eyes of my heart are drawn instead to the grim waves of fear. Chris is in pain and I have to dial 9-1-1. Our doctor reads a list of possible (likely?) side effects of the new treatment. We walk through the doors of the Avera Cancer Institute yet one more time. The sound of the wind and waves grows deafening and anxiety clenches my heart in its white-knuckled fist.  I wish I had a boat I could climb into and control.

But then I remember that sometimes the boat is not safest place to be. Sometimes storms destroy boats. Sometimes the boat driver spins out of control and nearly capsizes the boat (just ask Isaac!). Sometimes medical science isn’t enough. Sometimes doctors just aren’t sure and can’t make promises. When my heart begins to drown, I have no choice but to cling to the One who has the power to silence and still it–to let him reach out and take hold of me like he did Peter. And if he is standing in the middle of the maelstrom, the safest place to stand really is on the impossible waves.

Sometimes I wonder, how long will we/can we remain here in this storm? Another day of uncertainty, loss, or physical suffering for Chris–another wave that comes and sends cold, drenching water down our backs. I shiver; I hate being cold. I hate–we hate–cancer. This time I picture Jesus suffering on the cross, obedient to his Father.  He never promised we wouldn’t suffer too, he just promised that he’d be with us in it. So we surrender to (or try to, pray God gives us grace to) the strong hand of Jesus holding our heads above water and we’re okay.  Still, I feel my toes wiggle into the void beneath us, searching for something on which to stand. When we first came to Sioux Falls, two people texted me the same verse in one day:

“…that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.” (Ephesians 3:18-19)

Like granite rising up in the water beneath our feet, Christ’s love sustains us, infuses strength back up into our feeble bones and even takes the edge off the cold waves we find ourselves withstanding yet another day. I would like one of my next posts to tell you about all the tangible–even miraculous–ways we’ve experienced his love so personally and generously.

We’re still hopeful that God will work through the immunotherapy and genomic drugs he’s provided to heal Chris’s body. Our anchor, though, is in the love he’s already proven on the cross.  And I’ll be honest, our faith is weak and fragile. We’re human and have tender hearts. But ultimately, the strength of our faith doesn’t really matter–it’s the strength and goodness and power of the one in whom we place our faith that makes it a great faith. Our faith in the storm is great because he is great. 

 

Memorial Day Weekend and a Scary Setback

Monday night this week, the medical update I was planning to write about got a lot more complicated. Around 11 pm, I rushed downstairs to quickly nurse Pippa before hopping in the car to follow the ambulance taking my Christopher to the emergency room. Chris’s sister Anne and her young daughter came over at a moment’s notice to stay with Pippa while we went to the hospital—a muscle spasm in Chris’s leg completely incapacitated him and sent his pain level up to an 8 or 9.

A little over a week earlier (Friday, May 20th), he had his second round of chemotherapy. This time the side effects were significantly more manageable. He felt slightly nauseated, but the right dosage of medicine meant that he was able to eat normally without skipping any meals. While he did have some fatigue, an afternoon nap the three days following chemo seemed to be enough. We were able to go on walks and resume more normal activity. Unfortunately, any joy we had in successfully navigating a week of chemo was swallowed up by pain in a rib under his shoulder blade that flared up, making it nearly impossible for Chris to sleep at night or even do basic things like lift a glass of water. Sigh.

So back he went to radiation for five days, which meant skipping a week of chemotherapy. He got two days of radiation in before Memorial Day weekend, which took the edge off the pain enough for us to join the rest of his family at the lake cabin in northern Minnesota. We had a great time taking the boat out and reading, playing Cribbage (mostly Chris and his dad J), going on a two-mile walk, and sharing lots of time with family. Chris even went out on the jet ski with our nephew Isaac.

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Poor Pippa–who wants to wear a cheek-squishing life jacket AND a big coat?!

By Monday morning, though, a minor twinge of pain in his leg turned into what felt like a pulled muscle, making it hard for him to walk. Fortunately, his painkillers and muscle relaxers allowed him to handle the 5.5-hour drive back to Sioux Falls. Upon reaching home that evening, though, the pain from the muscle spasms was crippling and intense. Seeing my husband in so much pain was scary and demoralizing. It’s hard to feel hopeful and confident in God’s love when you’re just so very weary and the pain is so severe. Cancer pain can be especially terrifying because of all the attached implications—i.e is the pain caused by the cancer spreading?

Words from my wise mother’s text helped sustain me through the next several hours: “Now is the time to gear down and determine not to project out to a dark place. Instead, in a disciplined way, think only of the current day and no further. Do what the present day demands and that’s all…Draw from him [God] every ounce of grace and strength that each day requires.” So with a prayer for God’s help I determined not to dissolve into tears, not to allow this newest scare to destroy our underlying hope, and to step into confident action mode. I called the ambulance, gathered a few things for the hospital, fed Pippa, gave Anne instructions for her care, and began following the flashing red lights to the emergency room. A spectacular purple, rainless lightning storm stretched across the sky as I drove and reminded me of God’s great power. To be honest, it also made me feel terribly small and I didn’t feel especially encouraged, haha J. But it was beautiful and I appreciated the gift of beauty to lift my thoughts out of our circumstances.

Meanwhile, the EMTs managed to get Chris in a more comfortable position, and Chris was able to have a great conversation with one of the guys on their team…ending with Chris praying for him and for his encouragement. I’ll save the full story for another time. I just have to say how much I admire my husband’s heart to care for people even when he’s in pain.

At the ER, Chris had several tests to rule out possible causes for pain. Finally, after a CT scan, the ER doctor told us that one of the original cancer spots in a pelvic bone had spread to the muscle and was causing the pain. The word “spread” landed like a rock in my stomach. Gear down. In a disciplined way…do what the present day requires. I felt the fingers of my heart tighten their grip on our fragile hope and I shifted my focus to what steps were needed to help my husband get comfortable. Add another pillow; ask the nurse for a different pain med. Around 4 a.m., we were admitted to the hospital and managed to sleep for an hour or two.

The next day, Tuesday, brought fresh perspective and new information. We met with our radiation oncologist, who assured us that the spot hadn’t actually spread, but had been there all along and would be treatable with another round of radiation. While the pain was still disconcerting, just knowing this wasn’t new cancer was a relief. In the light of day, this hospital experience felt more like a “manageable setback” rather than the overwhelming, hope-destroying specter it was in the night. Unfortunately, though, additional radiation would mean another delay in chemo/immunotherapy.

Today, Wednesday, began with Chris finally able to stand up on his own and taking significantly less pain medication. The dramatic improvement felt very encouraging. He began radiation, and after talking with our genomic oncologist’s nurse, I learned that Chris could actually start immunotherapy (called Keytruda) after all while undergoing radiation, we just needed our primary oncologist’s approval, which he gave. Now we’d only have to delay the chemo one week, but not the immunotherapy. Such good news to start the day!

We end the day now feeling tired but peaceful and thankful for the many new mercies God gave today. Chris’s pain has dramatically lessened and he’s able to get around. We hope he’ll be discharged tomorrow.

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Chris is looking forward to seeing this little Pip again!

One of the highlights of my day today was discovering one of my former students who I helped coach on the TCA girls’ soccer team, working on our floor here in the hospital. This girl put a big smile on my face! Thank you all again for your prayers, kindness, and love!

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I love this girl!

And so it begins…with news and nausea

This past Thursday Chris and I went in for his first round of chemotherapy. Before the infusion we had an appointment with the oncologist. During this appointment he reiterated that we still just had a 50/50 chance of getting the immunotherapy and other genomic-targeted treatment approved by our insurance company. In the meantime, Chris would start the first of nine (once a week) general chemotherapy treatments.

We headed over to the infusion center to get started, Chris still feeling tired and his stomach still off from a stomach bug that went through our family last week. Going into chemo feeling weak and icky wasn’t what we’d hoped for, but we didn’t want to delay getting started.

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Each weekly chemo treatment will take 3-4 hours. In addition to the chemotherapy, Chris also gets a lot of fluids through a drip. So Thursday, as we were getting started, our Patient Advocate, Leah, (the person whose full time job is to work with insurance companies on our behalf) came in and assured us that she will be able to get us the immunotherapy and genomic-targeted drugs Chris needs. I had to ask her to clarify 2-3 times because she said it so casually. What great news! Thank you SO SO much to those of you who have been praying with us for the approval of these drugs! Please continue to pray that we are actually able to get them, and that they’d come in time to fit in with the doctor’s treatment timeline. We are so grateful for you and for the assurance of this provision. God’s generosity towards us is sweet. The next prayer request is that Chris’s body responds well to these drugs. But honestly, that is not a battle for today. Today is for gratitude and celebrating a small victory :).

In the meantime, Chris completed his first treatment. Also a milestone. Unfortunately, it has not been without some fatigue and nausea. We’re still figuring out the right combination of medication, diet, and remedies like aromatherapy to help with these symptoms. I think we’re on the right track, but we’d love continued prayer for him to feel as well as possible during the next several weeks.

I’d love to update more later on how we’re doing in the midst of this and how God has taken care of us. Stay tuned :). But again, thank you, thank you for caring about and for us and for your love and prayers! We need you and appreciate you!