PRAY for PARKER and POP!
PRAY FOR PARKER AND POP: SEPTEMBER SURGERIES
Parker will have surgery tomorrow. Pop will have his turn next Monday.
At least that’s the current plan…but as we have certainly learned this year, we hold plans VERY flexibly in wide-open hands.
This year has been straight-up nutso. There is an invitation almost every day to choose either complete and utter meltdown or to sink a little deeper into His presence. We are also beginning to not be shocked when things impossibly line up in the most inconvenient ways, outcomes are literally the opposite of what we had hoped, or another wave of unexpected hard hits us from a totally new direction.
Sometimes I wonder whether we are becoming beautifully anchored in His goodness or simply becoming accustomed to the hits. I’m having deep conversations with Him about that one.
We are IN not just one storm, but a convergence of storms…and it has been relentless. Yet somehow, right alongside all of that, we understand “peace that passes understanding” more deeply than we did last year.
God is good. IN the hard, He is good. This isn't theoretical. This is TRUTH! As we beg Him for moments of respite that sometimes don't seem to come, He IS good.
And somehow, we are also good. Talk about miracles! We would not be good without Him. Without each other. Without our family and friends. Without all of you. Without the Kingdom warriors who have faithfully prayed and moved heaven on our behalf.
Gratitude overflows.
DETAILED UPDATE ON JUSTIN'S GBM JOURNEY
My last update about Justin ended with us preparing to meet with the neurosurgeon at MD Anderson. It has taken some time since then to process, pray and plan our way to a place of clarity while simultaneously navigating some particularly intense daily roller coasters with Justin.
We really like Dr. Weinberg and can't say enough great things about how he handled that appointment. He was thorough. Patient. He held space for processing and made room for questions to form. For almost 90 minutes he sat with us and helped us clearly understand where we are and what choices we have going forward. We are so thankful to have him on our team.
REPORT FROM THE SURGICAL CONSULT
Unfortunately, the meeting was long because things are pretty complicated and rapidly changing. We now believe the changes we have been watching on Justin’s scans are rapid tumor regrowth—not simply treatment effect as previously hoped.
This was absolutely not the news we wanted to hear, but there is also a strange kind of peace in finally having greater clarity about what is happening so that we can respond with effective treatment and specific prayer.
The growth has been dramatic and fast. There are multiple areas of new growth in and around the site of Justin’s original tumor, and the largest cystic mass grew by approximately 50% in only four weeks.
We didn't specifically count every mass, but Dr. Weinberg walked us through the imaging and showed us multiple separate cystic masses that he believes are arising from the same area of infiltrative tumor activity. Justin’s original tumor also contained fluid/jelly-filled cystic areas, so this appears to be part of the way his particular tumor behaves.
Dr. Weinberg described these cystic masses to us almost like balloons with internal faucets. They can fill at different rates, and the concern isn't simply the fluid itself. In Justin’s case, he explained that the cyst walls are associated with tumor, so as these masses enlarge they occupy increasingly valuable space and affect the surrounding brain. The largest one has grown dramatically in a very short period of time and is now pushing deep into the area responsible for movement and sensation on Justin’s left side.
Treatment-related changes may still be contributing to what the imaging looks like, but Dr. Weinberg believes the overall picture is now much more consistent with active tumor regrowth.
One of the pieces that helped him put this puzzle together was Justin’s response—or lack of response—to medication. Since the week of July 14, when Justin had his first major generalized seizure, he has been on 8 mg of dexamethasone daily, increased from the 2 mg he had previously been taking. Despite more than six weeks at the higher dose, his seizure activity and neurological symptoms continued to escalate.
Dexamethasone is used to reduce the edema surrounding brain tumors. Dr. Weinberg explained that if swelling from treatment effect were the primary reason for Justin’s worsening symptoms, he would have expected more improvement as the edema was treated. Taken together with the serial imaging and continued clinical decline, Justin’s lack of improvement despite prolonged high-dose steroids made swelling alone a much less convincing explanation. His belief is that the largest mass itself—and its effects on the surrounding brain tissue—is responsible for most, if not all, of the symptoms we are seeing.
We specifically asked whether simply draining the cysts could buy us some time instead of doing a more aggressive resection. For Justin’s particular anatomy, Dr. Weinberg explained that each cyst would have to be accessed separately and that simply draining them would create significant trauma without solving the underlying problem. Because the tumor-associated cyst walls would remain, he expects they would refill—potentially putting Justin right back in this same position within a relatively short period of time.
There are also two deeper masses that cannot safely be removed and will remain after surgery. One of those has approximately doubled in size since Justin’s first surgery in April.The larger of these is also developing a more defined wall and increasing vascularity. Based on its location, however, Dr. Weinberg does not believe it explains the full range of Justin’s current symptoms.
If nothing changes the current trajectory, the concern is that Justin will continue losing function on his left side and that seizure activity will eventually break through the medications again.
Justin would not wish the kind of seizures he has experienced on anyone. Sometimes a large generalized seizure comes with amnesia for the worst part of it, which happened with his first one. Unfortunately, he has also experienced seizures he remembers.
Those were terrible.
Dr. Weinberg believes the largest mass is responsible for most, if not all, of Justin’s current symptoms, so we are hopeful that removing it will significantly reduce—or possibly stop—the seizure activity, at least for now.
DAILY LIFE EFFECTS
The daily picture has been complicated too. Even the “good days” offer an opportunity to question whether we are making the right decision.
What has been happening on the scans has increasingly shown up in real life. Justin’s focal seizures became more frequent and frightening, and at the same time he began losing significant function on his left side. At his worst, he went from walking independently to needing a walker or wheelchair, became a major fall risk, and needed help with basic things he had previously done himself.
One thing we have learned through all of this is that “weakness” (it isn't weakness in the sense of muscles are not strong...it's more like slow/inadequate communication from his brain to his muscles with various rates of "packet loss" that stop communication all together) isn't always as simple as tumor = loss of function. Some of what looked like rapidly worsening weakness also seemed connected to focal seizure activity.
His seizures often weren't the dramatic full-body seizures most people picture. They could begin with strange sensations, tingling, or loss of control or function on his left side, sometimes building into something larger. What we had begun recognizing as “pre-seizure activity” seemed almost constant at times.
We finally added clonazepam to his seizure medications, primarily because the constant fear and anticipation of another seizure had also created a level of anxiety that needed some help. Unexpectedly, after clonazepam was added, both the obvious seizures and what we had been recognizing as his almost constant pre-seizure symptoms stopped.
That gave us a much clearer picture of what function was actually still there.
We also added PT and OT, and they have been helping Justin learn ways to communicate with and use that left side more effectively. The combination has made a meaningful difference. On really good days, he can walk without the walker, use his left hand and handle most basic daily tasks independently.
Those things may sound ridiculously small until you've watched them disappear.
And it actually makes the surgery decision harder, not easier.
HOW DO YOU CHOOSE?
Because of where the largest mass is growing, surgery carries a very real risk of worsening Justin’s left-side function—including paralysis.
It is one thing to discuss that risk while sitting in an exam room looking at an MRI. It is another thing entirely to look across the room on a good day and watch him walk independently, clap and dance with his grandbaby, hug his kids with both arms, and know that we are choosing a surgery that could potentially take some of that away.
But then there is the other side:
We are already watching the tumor take it away.
Waiting carries risk too.
We have learned in the glioblastoma world that very little is certain or predictable. Every tumor and every person battling it is unique. Every treatment option seems to come with a “maybe.” Even things that work for many people don't work for others, and there isn't always a clear explanation why.
People on this journey understandably become desperate to find the outlier stories, copy their protocols and hope their story will have the same outcome. The invitation to overthink, control and reach for the “incurable cure” is STRONG.
We have consulted with Justin’s entire MD Anderson team and sought referrals and additional opinions from neurosurgeons who are among the top in this field. God has connected us through people we love to conversations, emerging science and possibilities we never would have known to ask about on our own. What a gift. It has also given us a much bigger puzzle to solve and many more decision points to navigate.
So...we have asked about other approaches, challenged assumptions, gone back with more questions and tried to turn over every rock we knew existed—while also trying to prevent the search for “the answer” from consuming every minute, dollar and ounce of energy a day can contain.
Eventually, it keeps coming back to the same questions: Where does the Lord give us peace? What do we take into our hands and what do we leave in His? What is worth the sacrifice it demands to pursue?
The pieces have gradually fallen into place. There has been remarkable agreement among the medical opinions we sought, and there is peace for us spiritually as well.
Choosing surgery is not the only conceivable choice. But we believe it is one of the right choices, and it is the one that best fits what Justin feels he needs in this next chapter to show up each day the way he was designed and desires to live.
We have tremendous confidence in Dr. Weinberg, but also in the entire team surrounding Justin—at MD Anderson and beyond. We aren't placing all of our hope in one surgeon or one surgery. We are making the best decision we can with the collective wisdom of people who have devoted their careers to treating incredibly difficult brain tumors.
We have peace.
THE GOAL: QUANTITY + QUALITY
One of the things cancer forces you to do is continually redefine what you're actually fighting for.
Of course we want quantity. We want ridiculous amounts of quantity. We want years and birthdays and anniversaries and grandbabies growing up and trips we haven't taken yet.
But we don't want to pursue more days at any cost while sacrificing all the life inside those days.
So our decision-making is increasingly centered on quality AND quantity of life—with quality carrying enormous weight.
We are also pausing additional temozolomide chemotherapy cycles for now at the recommendation of his Neuro Oncologist. Justin’s tumor is MGMT-unmethylated—a marker associated with less benefit from TMZ—and we are seeing concerning growth despite having completed chemoradiation and his first adjuvant cycle. With surgery now the immediate priority, we are pausing, getting new pathology and then reassessing with his team what treatments offer enough potential benefit to justify their cost to his quality of life.
That does not mean we are stopping everything else.
We continue to consult with Dr. Saxon at Roots Integrative Medicine and look at Justin’s care from an integrative perspective too—supporting his overall health, strength, nutrition, recovery and ability to tolerate everything his body is being asked to do. We are still pursuing many of the natural and alternative things we have chosen along the way and making plans for additional possibilities after surgery. Right now, however, anything that could increase bleeding, interfere with anesthesia, complicate healing or otherwise make surgery less safe gets paused.
Getting him safely through surgery comes first.
This creates a little challenge for Justin because he likes to be “doing things” that are helping his body fight the cancer. For now, he is working on investing that energy in meaningful connection and preparing his body to handle (and heal quickly from) surgery as well as possible.
Then we regroup.
There are conventional options, integrative options, alternative approaches and potential trials already “in queue” waiting for this chapter to give us new information for the decisions that come next. We don't yet know exactly what the post-surgery plan will look like because pathology, recovery and what Dr. Weinberg is actually able to accomplish will give us information we simply don't have today.
We are trying very hard not to solve October while we are still walking through September. I have heard Ashlyn mention to care givers and government program employees several times over the last few days of being here with her visiting "that's a tomorrow problem to solve". I see the fruit of that mindset in her life. Today is much more manageable and overwhelming if we only address today's concerns today!
We have to stay in the present moment, or the combined weight of today + tomorrow will certainly paralyze us all.
PARKER'S FIGHT IS ONGOING AS WELL...
This may be the part that is hardest to explain from the outside.
These aren't two separate hard things happening to our family.They are happening at exactly the same time, to people who desperately want to be present for each other.
We want every possible minute with Justin.
Ashlyn wants every minute with her dad that she can get—and right now her ability to do that is understandably limited because her premature baby has been living in a NICU in Fort Worth and is about to undergo surgery that will completely change what caring for her looks like.
And I want every minute I can get supporting Ash, loving Parker, helping with Peyton and being present for my daughter while she walks through something no mom should have to walk through.
My ability to do that is limited too because my husband—her dad—is battling a terminal brain cancer diagnosis.
There simply aren't enough versions of us to be everywhere our hearts want to be.
All of our kids and our inner circle of people are doing their best to handle the waves coming at them...including many we have not shared. Some are "normal" challenges. That doesn't change the fact that challenges are challenging...especially when layered upon other challenges. There is nothing too small. No comparisons. Hard is HARD. Man, they are doing a beautiful job with the relentless nature of what we are dealing with. We all want to help one another carry a load that is too large to carry. We all want to be at Aspen's first halftime show on the LOGOS drill team, but some of us were in the NICU in Forth Worth and others in the ACCU in Houston. We are limited, but we are many...so the gaps get filled. That doesn't mean it isn't brutally hard to be separated and to struggle to carry one another's burdens and share in one another's joys the way we prefer and are accustomed to do.
Justin has limitations of his own. Some are physical, but increasingly they are cognitive too. Fatigue, medications, seizures, the tumor itself and everything his brain has been through can make it harder to process, remember and fully engage in the ways he wants to.
He knows that. We know that.
And he is working so hard to be here and fully present anyway.
Present to have the conversation. To make the joke. To sit with his kids. To love on his grandbabies when he can. To participate in decisions. To point people to the Jesus he loves so much. To make a friend feel better. To make meaningful connections on the good days and squeeze what he can out of the harder ones.
There is a particular kind of grief in realizing that time can be limited even inside the time you still have.
So this is another reason “quality of life” means something different to us now.
It isn't a medical score.
It is presence.
Ultimately, it doesn't matter if Justin walks across the room or is wheeled across the room. What matters is what he can do and who he can do it with in that moment.
That is what we are fighting to preserve.
And hopefully, God willing, to extend far beyond what the statistics tell us to expect.
SO WE ARE CHOOSING SURGERY AS THE NEXT STEP
Not because it is an easy choice. Not because we believe surgery fixes everything. It won't. Two tumors will remain, and glioblastoma doesn't disappear simply because a surgeon removes everything he can see.
We are choosing it because after exhausting the possibilities we knew to consider, consulting people we deeply respect, weighing both the risk of operating and the risk of not operating, and praying until we reached a place of peace, we believe this gives Justin the best opportunity right now for more life—and more life in his life.
We are praying Dr. Weinberg can safely remove as much of the rapidly growing tumor as possible while protecting Justin’s healthy brain and left-side function. We are praying for fewer seizures, greater independence and restored function. We are praying surgery creates better opportunities for whatever comes next.
We are praying for quality. We are absolutely praying for quantity.
And yes, we are still asking God boldly for more (quality) time.
MEANWHILE, IN FORT WORTH...
Because apparently our family doesn't know how to do one major life event at a time, there is also our tiny Parker.
Tomorrow, our sweet girl will undergo surgery at Cook Children’s for a tracheostomy and G-button placement.
Our second granddaughter came into this world on June 10 at only 26 weeks and 2 days after an incredibly high-risk pregnancy. After spending her first couple of weeks being what her NICU team jokingly called a “model citizen,” things became considerably more complicated. There were belly issues, heart concerns, an infection, chronic lung disease and a roller coaster of setbacks and victories over the months that followed.
After two unsuccessful attempts to remove her breathing tube, it became clear that her lungs weren't the only challenge. Her trachea also needs more time to develop. The plan became giving her a safe, stable airway while she grows.
A trach certainly isn't the path Ash and Hunter would have chosen for their baby girl. But it is hopefully the path that begins leading her toward the thing all of us have desperately wanted for her since June: HOME.
Home with her mom and dad. Home with her big sister Peyton. Home where we can love on her without hospital walls surrounding us.
Tomorrow is her due date. She just turned 3 months old and it's been 3 months of her fighting for her life.
Tomorrow, on her due date, at the age of 3 months, she will hopefully have a surgery that will lead to her going home. Not the way they planned or expected and totally opposite of the experience they had with Peyton. It's hard and messy and scary. AND...there is still so much hope and joy ahead.
There will still be significant training for Ash and Hunter, equipment, outpatient care and a whole new level of medical parenting between surgery and home. We are praying for a smooth surgery and recovery, decreased oxygen and ventilator needs, confidence and ease as they learn her care, and favor and provision for everything that will be needed once she finally gets there. Preparing for her to come home on a ventilator is enormous.
SHIFTING SCHEDULES
The timing of all of this is definitely not what we would have chosen.
In a pretty perfect illustration of this season, about 45 minutes after learning Parker’s surgery would be September 14, we got the call that Justin’s team wanted to operate that same day.
Because Justin had regained some function and Parker was already scheduled, his surgery was schedule instead on September 21, which had been the first “penciled-in” date if there wasn't a sooner spot that opened up. We were tempted to ask for a delay in the surgery by a few weeks, but waiting much longer carries its own risk as that main mass continues to grow and potentially compromises function that might otherwise be recoverable.
We had already canceled the birthday cruise planned for the week of Justin’s birthday on September 29 because of his worsening symptoms and pending surgery. In fact, his doctor had withdrawn travel clearance at the previous appointment. Then, less than a day before these surgery calls, we had booked an Airbnb near Ash and Hunter so we could still celebrate Justin’s birthday together, along with Peyton’s second birthday and a baby shower for Parker to help prepare them to bring her home.
The girls’ party stays. Justin’s birthday celebration and the Airbnb are canceled.
Roller coaster. Pivot. Trust. Open hands. Be grateful. And YAY for travel insurance!
Having Parker undergo major surgery in Fort Worth tomorrow and then turning around seven days later for Justin’s brain surgery in Houston is a lot for one family to carry. It affects Ash and Hunter, our kids, our extended family, Justin and me, and so many people trying to figure out how to be in two places and love two people well at the same time.
But these are the dates in front of us.
So, once again, we hold our plans in wide-open hands and trust Him with the timing we would not have chosen.
PRAY FOR PARKER AND POP!
Tomorrow, our prayers focus on one very tiny girl. Then, one week later, we turn toward Houston and pray for her Pop.
Please pray for Parker and Pop—and for those of us who love them with our whole hearts.
Pray for uncomplicated, successful surgeries. Pray for Parker’s lungs and her new airway, that her body tolerates surgery beautifully and recovery is smooth. Pray for Ash and Hunter as they learn an entirely new level of care for their daughter. Pray that this is the giant step toward HOME that we believe it can be.
Pray for Justin’s healthy brain and especially for protection of his left-side function. Pray for Dr. Weinberg and the entire surgical team—for wisdom, precision and steady hands, and for them to safely remove everything that can come out while protecting everything that needs to stay untouched. Pray for freedom from seizures. Pray for restored function. Pray for healing and recovery. Pray this surgery opens doors rather than closes them and positions him beautifully for whatever comes next.
And pray for us. Pray that in the middle of two surgeries, two cities, changing plans, scary possibilities, unanswered questions and outcomes we desperately want to control, that we continue to show up each day believing in the Goodness of God and seeking His presence over the outcomes we prefer.
Because make no mistake—we have preferred outcomes. We are asking boldly for them. We are praying expectantly for them.
But our faith cannot ultimately rest on getting them.
So pray with us for quality of life, for quantity of life, and for more time.
And while we adore the care teams surrounding both Justin and Parker—especially the incredible staff in the Harris NICU—we are specifically praying for this next chapter to include a whole lot LESS hospital.
We crave normal life. We crave the comforts and freedoms of home. And the financial and logistical weight of navigating two highly complex medical situations as a self-employed, middle-class family using a nontraditional health-share model is overwhelming, to say the least.
We need armies of prayer warriors who mean business. We absolutely cannot do this alone.
So we ask to tap into your belief—the kind of belief that understands Kingdom authority and the kind of faith that moves mountains.
Believe WITH us when our faith is strong.
Believe FOR us when our faith gets tired.
Both are critical. Every day.
We are strong one minute and desperately exhausted the next. Your belief and what flows from it steadies us and gives us permission to roll with the waves, knowing we are small pieces of a much larger army and it doesn't all rest on our shoulders alone.
And through it all—the outcomes we desperately want, the ones we fear, the plans that keep changing, the exhaustion, the uncertainty and this convergence of storms—we keep coming back to the Truth that has held when almost nothing else has:
GOD IS STILL GOOD.
