40 Days

Yesterday marks day 40 since Lindsey passed.  The day marker means nothing to me except that it represents an historic, cultural marker of grief time, as if that can be prescribed:  “grief time.”  When Lindsey first passed, I googled all sorts of things about grief and one of the questions I asked was, “how long is a grieving period for a spouse?”.  And, I got every answer under the sun based on cultures past and present, Eastern and Western, religious and secular.  But, the most consistent answer was how most cultural acknowledgement of grief is private and not part of broader, current-day Western culture.  Apparently, two hundred years ago there would be up to a year of mourning and a public ceremony to how people showed up in society, marked by garb or other signs.  And, at the turn of the 20th century, 40 days became a period of time to mark grief in some societies.  I don’t know.  Putting time on any of this is silly and truly dependent per person, and per situation in as much as time can “heal” or allow for healing.  However, I think there’s validity to allotting time, or measuring time and marking it somehow. 

Anyway, on the night I googled my questions, I decided to mark Day 40 on my calendar so that I could check in with myself and see if the period of mourning was done.  (Just kidding, I knew it can’t artificially end at some pre-determined time point).  But, yesterday became a day for me to reflect and it’s led me to write, again if only for my own catharsis.  Additionally, in light of all of the queries from friends and famliy of how I’m doing over the last eight weeks, I thought I’d share this response.  I’ve been grateful for the checking in but have honestly been unsure of the rambling answers I’ve often given.  Upon reflection on 40 days, I’ve come to conclude that my heart and life seem to be characterized by three verbs on an almost daily basis. 

I miss.  I hurt.  And I wonder.

I find that amidst the requisite current of life that must go on for my family and for me personally, my brain and heart continually stir and wander into or between one of these three states of being in my thinking and pondering.    

I miss.  I miss her terribly.  I grieve the loss of her presence.  The permanence of her absence is staggering most days and the depth of loss feels abyssal.  I know there will be future days when the acute waves of grief will subside, that grief will but lap mostly, and life will feel normal and manageable again.  But, today, and these days, that’s not how it feels.  I’m able to do life and, for the most part, drive forward with the commitments and things we have each day, and I’m even able to engage socially in normal-ish ways, but the sucker punch has yet to subside and I often still have to keel over, cry, and catch my breath.  And I hate it.  I hate the loss. 

I miss doing life together.  I miss socializing together.  I miss raising our kids together.  I miss laughing and talking together.  I miss cooking together.  I miss watching tv together.  I miss picking up the house together.  I miss getting ready for bed together and discussing the day.  I miss her smell and the warmth of her embrace.  I even miss fighting together and disappointing her because there was always reconciliation and coming together again.  But we’ll never come together again.  This side of heaven, we’ll never be together again.  And I miss that.  Her presence haunts me, but her absence haunts me even more…and she’s invariably gone. 

I hurt.  The pain of loss, the pain of what I miss is ever-present.  It’s a fresh wound that doesn’t get enough time to heal as recent memories and fresh reminders of loss continue to collide with me on a daily basis.  Knowing I don’t get to grow old with her and knowing I’ve lost the utter comfort of that relationship hurts deeply.  The pain of knowing the boys will never see their mom again, will never grow up with her, will never know her physical love, warmth, and encouragement takes me down on a daily basis.  I hurt for them, and with them, and hurt for what they don’t even know to grieve.  It’s painful to have to start over, to change and now manage all of life’s logistics, to become the sole administrator of our family’s life.    

And I wonder.  I wonder what will become of my life now that she’s gone.  I wonder what will become of the boys’ lives as well.  What will we lack?  What will we do?  What will life end up looking like?  Where will we struggle?  In what ways will we succeed?  I wish I could say that my wonder over the future was laden with optimism and hope.  One day I’d expect to feel optimistic and hopeful, but today the future feels bleak and scary, and I’m fearful to face it.  I don’t want to face it but I know I have to.  I do find comfort in God, His promises to care for us, and His Word.  And we have been carried by the community He has provided, through a myriad of ways.  But, in the same way I don’t want to get out from under the covers each morning and face the day, I don’t want to face my new reality and wonder what it will be. 

But, each day since her passing and by God’s grace, I have gotten out from under the covers and put my feet on the floor and marched forward into the day, into what it holds.  And, I just walk forward because I have to, but these new realities follow and go with me.  I walk forward missing my other half and companion.  I walk forward wounded, still feeling acute pain and loss.  And, I walk forward wondering what each day and the future connection of days will ultimately hold for us. 

Lindsey Laid to Rest with a Beautiful Song

To those asking, the funeral service is now posted under the Funeral tab on this website, and can also be accessed through this link: Lindsey's Funeral

As a family, and with a few close friends, we laid Lindsey to rest this morning.  The air was cold, the sky was blue, and the short service was beautiful.  Seeing her lowered into the ground and covered with earth is an image that is now seared in my mind for the rest of my days, I’m sure.  It was sad and heavy, and still so surreal.  A dear friend pointed out how Lindsey still “gave her boys tractors to watch, even at the end,” as tractors were used to transport earth and then fill her grave.  Surely, it was an image my boys will carry with them through life as well.  Though I continue to feel a storm of emotions, her committal was met with a moment of peace and stillness within my soul.  And, for that I am grateful.  I was at rest enough to let her go.  

In addition to her brother leading us through a corporate singing of “Great is Thy Faithfulness” on guitar, we were also blessed with a song a friend of ours shared with me after she passed.  His name is Jonathan Allston, and he’s a dear friend we’ve gotten to know through our time at church together.  He’s served as a pastoral intern, and his family is a part of a small group at church that’s been together since the Fall of 2019, a few months before Lindsey was diagnosed.  So, he and his family, along with many others in our neighborhood group as it’s called, have been a huge part of our journey from Lindsey’s diagnosis to the end.

At a few touchpoints along the way, he has written and sent Lindsey poems of encouragement and lament littered with personal references that absolutely moved Lindsey and me.  In order to preserve some intimacy between us, I’ll keep those poems in my private possession but I did want to share his most recent poem, brought to life in an enchanting, somber, and heavy song shared with me last Wednesday.  Our family and I loved it so much that we tried to find a way to slip it into the funeral service at the last minute, but it was too late for practical reasons I easily agreed with and settled on.  But, this morning, our pastor surprised us with the gift of this song at her graveside.  Our friend Jonathan, that before last week I didn’t know could sing, much less write music, appeared along with another friend from church to perform the song, “Christ give rest (Lindsey’s song),” as he titled it. He said he wrote it this Fall about Christ giving us rest in death but that it was her song now.  This is a fitting poem and prayer for a time such as this.  Please give it a listen.  And forgive any audio quality issues, as he shared this to encourage me and to express his love for Lindsey, not to put on Spotify.  And, hearing it performed today was one of the most fitting and moving musical experiences of my life.  I felt so loved and so soothed by the promises of God, so set at ease with the laying to rest of Lindsey.  

Song shared with Jonathan’s permission.  Please give it a listen.  Lyrics below. 

Christ give rest to your servant with your saints

Where sorrow and pain are no more

Neither crying, but life everlasting

Where sorrow and pain are no more

I go to my fathers in peace

I go to my mothers in rest

Abram and Sarah, martyrs and priests

I go to my fathers in peace

Refrain

I’m leaving the valley of tears

I go the city of light

A place and a welcome are richly prepared

I’m leaving the valley of tears

Refrain

I know where it is I belong

I’ve tasted the bread and the wine

Angels and saints I’ve joined in their song

I know where it is I belong

Refrain (2x)

We entrust your servant to your care

Where sorrow and pain are no more

(Text and Music - Jonathan Allston)

Obituary

Jason here…I cannot thank you all enough for your support over the years and especially during this difficult time. I am overwhelmed with gratitude and blown away by how you’ve so lavished us with gifts over the years and especially recently. For those seeking to offer something as an expression of love, I’d point you to three of the charitable organizations below that were dear to Lindsey’s heart, that we support. From this page, you can click on the charity names below and link to their respective websites. Two are religious by nature, one working with kids from our elementary school and in the neighborhood surrounding our church, the other runs the rescue mission in Greenville and a children’s home among other great services, and the other is a fund to support retail workers with local businesses in Greenville with a heart for supporting their staff in ways beyond the norm. All three do incredible work in their respective spheres.

It is with deep sadness and much love that we celebrate the life of Lindsey Ann Wright Edwards, wife of Jason Edwards. Lindsey, 40, battled lung cancer for three years before passing away on Tuesday, December 13, 2022, with her loving family at her side.

Born in Augusta, GA, Lindsey was the second daughter of Bill and Beverly Wright. Lindsey grew up in Evans, GA before attending Furman University. She and Jason met at Furman, where she graduated with a Bachelor of Science in Math in 2005. Following Furman, they spent some time in Clemson, SC, Nashville, TN, and Jackson, MS before settling in Greenville, SC. Around Greenville, Lindsey could be frequently seen with her four boys at Stone Academy or a local soccer field. She was a faithful member of Grace and Peace Presbyterian Church. From a young age, Lindsey’s faith in Jesus was an integral part of her life. Her faith was her primary hope and comfort, especially during the final hard years.

Lindsey’s favorite activity in life was being a loving mom of her four boys, Wright, Thomas, Henry, and Graham. Lindsey is also survived by her three sisters, Kate Key (Sims), Melissa Wright, Virginia Lacher (Rob) and her brother, Will Wright (Jessa), as well as her in-laws, James and Karen Edwards, and sister-in-law, Jane Edwards.

The family will receive friends on Friday, December 16, 2022 from 5:30 p.m. until 7:30 p.m. at Thomas McAfee Funeral Home (639 N. Main St., Greenville, S.C.). The funeral service will be on Saturday, December 17, 2022 at 3:00 p.m. at Downtown Presbyterian Church. The burial service will be private.

The family wishes to send a special thank you to their Grace & Peace Presbyterian Church family for their extraordinary love and care over the past 3 years.

In lieu of flowers, donations in Lindsey’s honor can be made to Poe Mill Achievement Center (PMAC), Miracle Hill Ministries, and/or the Bridge Fund Collective.

Remembering our dear Lindsey

After battling cancer for three years our dear Lindsey passed away in her sleep early yesterday morning.

We grieve her passing, though we rejoice that she is now free of suffering with her faithful Savior, Jesus. Join me in continuing to pray for Jason and her four boys—Wright, Thomas, Henry, and Graham.

A visitation will be at Thomas McAfee Funeral Home (639 North Main Street) on Friday Night from 5:30-7:30pm.

• To respect the family's energy and stamina for the weekend ahead, the receiving of friends will end promptly at 7:30pm, so being in line at 7:30pm (or before) is not a guarantee of seeing the family.

The funeral will be at Downtown Presbyterian Church (435 West Washington Street) on Saturday afternoon at 3pm.

• There will be an open casket from 2-2:30pm for those unable to attend the visitation.

• The funeral will be livestreamed here on the website UNDER THE LIVESTREAM TAB UP TOP on Saturday at 3pm.

If you have any practical or care questions for the Edwards Family, direct them to me instead of immediate family members. 

Mallory

mallory@graceandpeacepres.com

Processing the Heaviness

Jason here...

I know I need rest, but I am stirring…

I want to be near her, be with her, talk to her. But, I can’t. 

So, I thought that as an early, small act of catharsis I’d share some media that reminds me of her, and brings me comfort. And, I hope it will let you connect with her in a small way today, to hear her voice again and to sit with a few songs that resonated with her/us these final days.

The first thing I drop is the rough-cut, unedited interview for a podcast recorded a little over a year ago. Lindsey had just finished her course of whole brain radiation so this was likely October 2021. Our friend, Greg Ward (and founder of Bridge City Coffee as well), was seeking interviews for a podcast in which he interviews people dealing with the hard and difficult parts of life and seeks to discuss it in a real way. (Our culture, because of the comfort we can provide at every turn, is anemic when it comes to dealing with pain, hurt, loss and suffering and we were/are too but learned a lot along the way). So, his pod and lineup of interviews will be with people and how they deal with the ugly and hard, in a real way. And not the produced, “Instagram-worthy” way or concealed approach so often exemplified in our culture today.  That being said, the first drop of episodes is still in process after a necessary break for life and work reasons. But, he was gracious enough to share this with me and I listen to it to hear Lindsey talk about her life and recall her wisdom.  Through the interview, I felt such gratitude for the friendship and partnership we shared as a couple.  So, ramble over…here’s the audio link in all of its raw glory.  Thank you, Greg, for sharing this. (There are a few instances of foul/raw language FYI so maybe keep little ears away).

Another item I wanted to drop here is a song I shared with Lindsey early on in this journey. And this song is a Christian song, a song we found helpful at representing our resting place as we sought to make sense of this staggering diagnosis and likely outcome. Please know this is not me pushing a faith position onto anyone but truly is representative of a position we hold and the comfort we have. It’s the comfort Lindsey took to her death and we believe is now realized in Jesus. That being said, this is a song by John Lucas called, “Time.”  Lindsey referred to this in her talk posted on the blog a few weeks back.  It’s essentially a poem written as a summary of the famous passage in Ecclesiastes 3: 1-8 that refers to there being a season for all things in life.  This Old Testament passage was most beautifully entered into the canon of folk Americana by the Byrds in 1965 with their song, “Turn! Turn! Turn!,” a song that is more familiar to most of us. But, this song by John Lucas reminded Lindsey of the comfort she had in Christ, as it so poetically reminded her with the chorus below:

And I don’t know the end, or tomorrow’s story

But I have found the one who gives me rest

And I will make my bed in His promises

For He holds true when nothing’s left...When nothing’s left

And, finally, the song that she listened to on repeat during her final weeks, and the beginning of the Advent season, was the song by Jess Ray that we shared on a post in January of 2021. Her lifelong friend turned caregiver in the final days, Sarah Stewart, sent this to us in December of 2020 when Lindsey’s cancer progressed and she was staring down a winter of toxic chemotherapy. (Link here: A Hard 15 Days). It’s a song about Christmas and loss. It deals beautifully with the reality that, for some, Christmas is a painful reminder of hurt and suffering and it begs the hearer to rest and know that it’s ok to not feel the feels at Christmas but to rather look to the one who came to give rest. As Lindsey suffered and felt loss and great sadness, she found comfort in this song:

No need to smile, no need to sing
Be still and think of this one thing

Finally at Rest

Lindsey passed peacefully in her sleep early this morning. She’s finally at rest, now made whole, and now with Jesus.

Hospice Care Initiated

All,

I wanted to let you know that we have started hospice care for Lindsey today. The care team has spent the day preparing our home and bedroom to better care for Lindsey. She’s now on a much higher level of oxygen and more regular and potent meds to help her body relax and feel more able to breathe. She continues to labor to breathe. She’s been unable to sleep through the last few nights due to the challenges breathing and coughing. We hope these interventions help her get some much needed rest tonight. 

It’s been a sad and hard day for both of us, her family, and our boys. Telling the boys and connecting the dots to where this is headed have been the hardest conversations of my life to date. 

Please pray for Lindsey’s comfort and for for our family

Cancer is Progressing Again

Jason here, providing an update on Lindsey.

In light of all of the issues Lindsey’s had, her medical oncologist ordered a CT of her chest, abdomen, and pelvis and she had the exam on Wednesday night. We’ve received results from the scan and it does show that cancer has spread. The radiologist reading the scan said the thickening in her lungs and cause of her breathing issues is likely cancer spread (and not pneumonitis as we previously hoped). The cancer has also spread to her liver, a few spots in her lungs, and some distant lymph nodes.  This is obviously not good and certainly explains why she feels so physically deficient and feeble.  

A biopsy of her liver mets has been scheduled for next Friday, a week from today.  We will send the biopsy off for analysis to see if any new genetic mutations now characterize the cancer, to see if any new therapy could be used to target it. 

Prior to the scheduled biopsy, we plan to meet with the doctor (medical oncologist) Tuesday to further discuss and form a plan of new treatment(s).  We understand there are a few clinical trials that Lindsey can participate in locally and hope that the results of the biopsy may open the door to novel targeted therapies if they were to reveal a new mutation to target.  

We've established contact with in-home health professionals this week.  Linds has had visits from two nurses with in-home health, one nurse practitioner with palliative care, and one physical therapist already this week.  It's apparent that in-home visits are likely a new part of Lindsey's care.  It's bizarre to have home-health professionals visit our home but certainly nice for Linds to receive care at home rather than in a clinical setting.  

Linds remains weak, physically limited, and on oxygen continuously.  And, as you can imagine, she's scared.  I am too.  Please pray for her continued comfort and improvement.   And please pray for our boys as they adjust to Lindsey's new condition.  Pray that they could process what they're observing and express what they're feeling, and that we/I could be sources of help and comfort to them with regard to understanding and processing what's going on.  It's sad what's happening and I want them to know that it's ok to feel sad.  

Lindsey is Back Home

Jason here...

Lindsey has improved enough to be discharged and came home today. She's currently napping. She's still pretty depleted and tired but so happy to be back in the comfort of her own home. The boys and I are glad too!

She couldn't be discharged without in-home oxygen so we've gotten that and she's on oxygen for the time being. We still hope she'll improve enough to not need extra oxygen for getting around but, for now, we'll take it so she can be home and have the extra help she needs to move about the house.

Please pray that needing oxygen doesn't become a regular part of her life. And pray that she’ll continue to improve over the coming days on the course of steroids she’s on.

An Extended Hospital Stay with Breathing Issues

Jason here, providing an update on Lindsey...

We've unfortunately had a rough week and a half. During the week of Thanksgiving, Lindsey's ability to breathe started progressively worsening on a daily basis. From her scan six weeks ago, we knew two small collections of fluid around her lungs (pleural effusions) were noted and suspected that more fluid had started collecting. (She had a similar breathing issue two years ago and the cause was an effusion around one of her lungs. And, that was alleviated by draining the fluid through a simple outpatient procedure). We were out of town for Thanksgiving and were trying to get through the long weekend and back to Greenville until we went to a doctor but, on Thanksgiving day we decided we needed to seek medical attention as breathing had become too much of an issue for Lindsey.

So, Thanksgiving day we went to the ER with reported breathing issues hoping they'd conclude that Lindsey's issue was just fluid, drain it, and send us on our way. Well, it wasn't that straightforward. Lindsey ended up spending two nights in the hospital (Thursday and Friday nights), was treated for pneumonia and eventually had the fluid drained Saturday. She was discharged and encouraged to follow up with our primary care team back in Greenville. She had a CT while in the hospital and we knew from that result that there were indeed two pleural effusions, the right bigger than the left. She had the larger one (right side) drained last Saturday and we planned to go through our care team and have the left side scheduled for draining this week. (They drained 1 liter from around her right lung last Saturday).

Lindsey did feel better after having the fluid drained last Saturday but, unfortunately, her relief was short lived and her breathing did not improve in the following days. In fact, her breathing has continued to slightly worsen each day this week. To make a long story short, Lindsey was admitted to the hospital Tuesday night and has been in the hospital since then. On X-ray, Lindsey's lungs show opacities or infiltrate throughout her lungs. It looks like a pneumonia. She's been worked up for an infection and had blood cultures taken and doctors are pretty sure now that what they see is not an infection or pneumonia. They think the likely observed problem is called pneumonitis, or an inflammation of the lungs. Pneumonitis can occur as a long-term side effect to chemotherapies or other therapies for cancer treatment. The doctors think that what Lindsey has been experiencing is probably pneumonitis and they've initiated a course of steroids to lessen the inflammation and provide her relief.

She had steroids initiated Thursday after an investigative biopsy and samples collected from her lungs Thursday morning. She also had 1 liter of fluid drained from around her left lung. We hoped she would have felt more relief by now but it can take days for the inflammation to go down.

So, for now, she remains in the hospital struggling to breathe, unable to exert herself much at all without getting winded. Just talking and walking to and from the in-room bathroom are enough to make her breathless and need to collect herself. Would you pray that her breathing would improve? If/when it improves enough for her to regain some of her vigor, and preferably without oxygen, they'll let her return home.

Linds is exhausted from this new turn of events and been scared a lot. At times, she feels like she's suffocating or can't catch her breath and it's terrifying. Essentially, she has two issues in play: fluid AROUND her lungs, and inflammation or infiltrate IN her lungs. We initially thought the issue was just fluid around her lungs preventing them from expanding and that with a quick drain, she'd breathe well again. It turns out that having inflamed lungs is much more problematic. Pray that her lungs would be able to function better again soon.

Straight from Lindsey’s Mouth

Hey, friends,

Mallory Corum here. I have something special to share with you today.

Last Saturday, Lindsey spoke at our church’s women’s brunch. The theme for this brunch was to consider/practice gratitude in our lives as we experience suffering, because we are told to expect it in the Christian life (John 16:33). Part of the morning included a testimony from one of our members (Lindsey!). She did an AMAZING job.

As she is wont to do, she made us laugh with her anecdotes! And, to be frank - she made us cry. We cried alongside her as she shared specific hardship and moments of redemption and grace. Her testimony to the Lord’s kindness was beautiful. As she looked back (specifically, at the last year or so) on her cancer journey, she shared how cancer allowed her to have thankfulness in her heart that she wasn’t able to before.

I recommend (majorly recommend!) that you listen to the recording below. Have a few tissue nearby, just in case.

This is the Psalm she read at the end of her sharing, Psalm 34.

Another Brain Scan, Another Result to Process

Jason here again...

Lindsey had a follow-up brain MRI this week. As many of you know, Lindsey has routine, periodic follow-up imaging every three months or as necessary if there are ever areas of concern, disease-wise. The purpose of these scans is to evaluate how her current therapies are working and learn the current state of disease in her body. Results of imaging inform decisions on therapies and interventions moving forward. Honestly, regular imaging studies (to her chest, aka "below the neck" and to her brain, aka "above the neck) always looming on the calendar becomes a tiresome and weighty reality to carry. It can be exhausting preparing for them, knowing they're always out there to possibly tell us something we don't want to hear. The physics nerd in me always thinks of Shrodinger's cat in quantum mechanics and how we don't know the state of the cat until we "open the box" and look inside to see what state the cat is in. To take the nerd dive a few sentences further (and you're welcome)...everyday life on this journey feels like the superposition principle of Shrodinger's cat paradox: we live daily (like a state of everyday quantum mechanics) as though both realities are true, that cancer in Lindsey's body is both alive and dead at the same time. It feels always alive because we haven't been told it's gone yet, and because she's on therapy continually. But, it also feels dead some days in the sense that Lindsey has been able to live very well for almost two years now. She fights to live her life as she mostly always has, and has been successful at that for the majority of this journey. We also so desperately want to believe it's dead and wish it were dead and we've endeavored to live as much as we can as though it is. But these scans always provide the up-to-date, jarring reality whether we're ready for it or not. In some ways some days, ignorance is bliss.

So, at best, these scans make us encounter the dread again, bracing for bad news even if there is none this time. And, at worst, these scans feel like a weight that often pulls us back down to the reality that cancer is still there.

Sorry (not sorry) for the dork dive into the quantum world. Hopefully you could get the gist even if you aren't a cat person.

Physics stream of consciousness aside, the results of the scan felt like a dose of the scenarios mentioned above: dread but mixed with maybe good, maybe bad news. The purpose of this scan was to follow up on a small spot in Lindsey's brain from a month ago and to see if it had changed at all, to determine if it is concerning today. The good news is that the spot of concern remains stable and quiet today. We'll continue to follow it but it is not an area requiring action today. However, there are now two other very small spots of possible concern. They're not obviously cancer, they could be vascular spots. But, they are just barely above the minimum threshold of remarkability so they're noted. And, because of that, Lindsey will have a follow-up brain scan in two months, not our usual period of three.

That being said, we're thankful there's nothing "above the neck" that requires urgent attention or intervention. Her brain disease really does remain stable, which is a huge praise for us. Would you join us in praying that the tiny new spots of focus would either resolve and go away or turn out to be vascular changes (as a result of whole brain radiation a year ago) and nothing more? We're thankful Lindsey has been able to continue Tagrisso, the targeted therapy drug that has particle sizes small enough to cross the blood-brain barrier. We hope this saturation of drug in the brain continues to keep her brain stable, disease-wise.

With regard to how Lindsey is feeling, she's feeling and managing much better after her second cycle of chemotherapy relative to how she felt after the first. She's been tired and run down as is expected but not had severe mouth or throat pain like before. She's been able to remain hydrated, rest a lot, and eat in the days following her last administration. That is a huge win so thanks for those of you who have been praying. Since she started this new chemo treatment five weeks ago, she's consistently struggled to sleep through the night and wake up feeling rested, but she was able to sleep through the entire night last night without waking so we've celebrated that today. (I slept through the night as well for the first time in probably three weeks so we both got to celebrate waking up rested together).

Lindsey is losing her hair again. She describes her scalp being tender and hair as irritating when on the verge of falling out. Because of that, she asked me to preemptively buzz her head a few nights ago. So, if you see her, she's adorned like a peach with short fuzz currently. Though some hairs are still in the follicles, it doesn't seem to irritate her as much at this length. And, we expect the fuzz to fall out soon.

Thank you for your continued support.

Can I ask a closing prayer request for our boys? Though Linds has managed better this cycle, surely the boys have taken note and been affected by Lindsey’s limitation and suffering as a result of treatment. Though they probably can't articulate it and aren't maybe fully aware, seeing Linds depleted and hurting more than they've observed over the last year has to be discombobulating to them. We've noticed stronger tantrums, more crying, and that they are more quick-tempered than usual. Some of that is age/stage (birth order brother dynamics) and some of that is probably the overstimulation and adjustment the new school year routines bring but seeing mom kicked in the teeth with chemo every three weeks has to take a toll. It’s a new reality that’s vexing not just to them, but also to me/us or any adult. So, would you please pray for them? And, beyond just asking for prayer for them, please know we will continue counseling for the older two boys (10yr old and 8yr old) and plan to start sessions for Henry (5yr old) in the weeks/months to come. So please pray for counseling to help them learn how to articulate fears and sadness, and for them to learn healthy coping/processing methods when they feel sad.

White Blood Counts are Up; Pain is Down

Jason here...

Thanks again for your continued support.  We continue to be humbled by the outpouring of concern, prayers, and love.  

I wanted to share a positive update, in relative terms.  

Lindsey was able to spend time at the oncology clinic early this week, receive IV fluids, antibiotics, and some extra pain medicine to help her manage the mouth and throat pain.  As a result of the injections over last weekend, her immune system numbers are up again.  (It remains unclear what helped resolve Lindsey’s pain in her throat, particularly. She felt better within a day of antibiotics so maybe this was an infection and just a coincidence this go around). She's far from feeling 100% but she feels markedly better and has been out running errands, taking kids to school, back and forth to playdates, and able to eat and drink again in comfort.  We're thankful for that.  

She still feels a little groggy-headed at times, and can have spells of tiredness.  So, please continue to pray for her and the quality of her days that she could be free from side effects or at least have them minimized.  She's scheduled to have chemo every three weeks which means she's up for the next round at the end of next week.  With that in mind, please pray that the side effects would be far less severe this time around.

Linds had pretty bad side effects during the first round of chemo 18 months ago and then seemed to somehow adjust and not have severe issues to manage through the next five rounds.  We hope that will be the case again. 

We also hope that she could keep her hair through these new cycles of therapy.  Because of the type of chemo she's on, it's not likely she’ll keep her hair but pray that she could. And, if not, pray for her spirits going through this again for a third time.

Thanks again for all of the care for my bride.

Disease Progression and the Start of a New Therapy

Jason here.  It's been a while since our last update.  We've had a really good Winter, Spring, and Summer together.  We've packed in a lot of great family time, trips, and experiences together.  And, it's been a sweet time of stability and relative normalcy.  Linds has been her spunky, usual self (mostly) administering our lives again (haha).  About a month ago, however, Linds has started to feel some gradual, declining changes in how she feels.   

I resigned my position in December to take a part-time position with our clinic working remotely from home.  I've been exceedingly grateful for the opportunity to remain gainfully employed and maintain benefits while also having less work responsibility and more time at home to be available to Lindsey and the family.  For the most part, it's been a really good situation to provide our family the margin and extra attention it needed and continues to need. 

That being said, we've had a full summer together.  The boys have done swim team, Lindsey and I have been to the Caribbean and Europe, our family has been to the lake, the beach, and even taken a road trip through DC to NYC for a long weekend.  Lindsey was feeling well so we decided to go for some big trips and have some experiences.  

For the most part, Linds has felt well during a lot of the Spring and early Summer but, about a month ago, she started feeling a little more run down, a little less energetic.  Before our family trip to the beach in late July, Lindsey had a set of scans that revealed likely progression of disease as indicated in swollen lymph nodes at many body levels and some thickening of areas of her lungs.  At that time, the decision was made to switch Lindsey to a new therapy: to a new chemo regimen.  

Because we had the family beach trip and a subsequent long weekend road trip to New York already planned, the decision was made to arrange the start of her new chemo upon our return of those two trips.  So, Linds started her new chemo a week ago from Thursday, 9 days ago.  She's been told to expect that this chemo is a bit more toxic than what she's been on recently, and that she'll likely lose her hair again (which is always a major bummer).  

The new chemo will result in a nadir or low point of energy on day 4-5 after administration.  That unfortunately coincided with the first few days of school for our older three boys this week.  And, Lindsey did need to slow down as she felt the effects of the drugs.  But, she continues to feel depleted even now into day 9.  

Linds had a week follow-up on Thursday (as is standard) and her blood work revealed that her white blood counts and neutrophils are drastically low.  These numbers indicate a weakened and vulnerable immune system.  And, it totally jives with how Lindsey is feeling.  To address this, Linds is being given a drug for 3 successive days (given in shot form) to hopefully rev up her immune system and get it rebuilding the appropriate blood cells ASAP.  

In light of all of this, would you please pray for Lindsey especially right now?  We didn't expect her to be so low and so knocked down.  She's especially tired and weak.  And, she's suffering from two other acute issues: one is chemo related and the other is an unfortunate physical happenstance that's developed during the last year but can't be managed because she's on special therapy drugs.  The first is the expected side effect of chemo: a sunburn feeling along the mucosal lining of your body which, most notably for her, is within her throat and mouth.  Eating, drinking and swallowing are especially painful right now.  The second issue is a weird dental issue: she's cutting a molar, aka a wisdom tooth.  This is especially rare but, for whatever reason, Lindsey has a wisdom tooth that never came in while she was younger.  And, again, not sure why, but this tooth has decided to appear or move toward other existing teeth in the back of her mouth.  And, this causes a lot of pain.  She's seen an oral surgeon but removing a molar in an adult is not without its risks. There’s a chance that the wound wouldn’t heal and the gap wouldn’t seal for an otherwise healthy person, but the therapy drugs and bone drugs Lindsey’s on likely increase the risk of poor healing.  The fear is that a surgical resection would create a bigger issue and bigger infection vulnerability if a gap was created and it didn't heal and/or seal back over.  So, she's kind of painted into a corner with this.  Until this week, she's mostly been able to manage the pain with mouthwash and care.  But, probably because of the chemo affecting gum and mouth linings, she is in acute, tear-causing pain and can't seem to get relief for this at the moment.  

So, please pray for Linds and for relief.  She's hurting.  She's fighting through the pain but, when it hits, it's fairly debilitating in what you can continue to do while experiencing it.  Also, please pray that the immune boosting sequence of shots would work and not create further side effects like bone pain as this seeks to activate things in the bone marrow. 

Pray also for her spirits and for our family.  Kids back to school and establishing that routine has felt like a heavier than usual burden.  They've had some bedtime tantrums from all of the overstimulation I'm sure but it's just been a hard week.  And, I think the kids are perceptive that mom isn't doing well and it has a knock-on effect with how they behave, probably not having the developed emotional tools with how to process what they're feeling and observing.  (As if we as adults have all the tools...).  

Again, thank you all for your continued support through prayer, well wishes, food, playdates, and help in and outside of our home.  We continue to feel overwhelmed with gratitude for all of the support and overwhelmed with being able to thank and appreciate everyone sufficiently well.  But know that even the smallest things are greatly appreciated.  

Jason