“Do you have a minute? We have a diagnosis!!!” These words from Heidi caused yours truly to literally raise his hand in the nail/screw aisle at our local home improvement store to give God His due praise for this monumental breakthrough that we have been wishing, hoping, researching, fighting, and praying for since our original post that set the public part of this journey in motion! Praise be to the Lord alone for what I am about to share with you…

From the outside looking in, a definitive diagnosis through urine and blood testing may not seem like a huge deal to many…in the normal seasons of life that sequence is often a given that is taken for granted. We used to do the same, but there are now a deluge of “small things” that we plan to never under-appreciate again. It has taken almost two years of intensive searching with a lot of twists and turns to say the least to arrive here.

Before the specifics, a true answer to prayer was that Landon’s test results revealed his elevated levels in the first draw…they can often take several rounds to get an accurate reading. A more-normal-than-not requirement we were asking God to spare us from with all the poking and prodding that Landon has already undergone. And He did it! Can God? God can!

The diagnosis? Mast Cell Activation Syndrome or MCAS as was referenced in our last update. It is a chronic immunological condition where immune cells called mast cells release excessive or inappropriate amounts of one or more of a 100+ chemical mediators—such as histamine, heparin, and cytokines—leading to recurrent, multi-system symptoms from simple allergy-like levels to dehabilitating extremes. For Landon, the specific “mediator” that is 2.5 times more than the top of end of normal range is called prostaglandin D2 (PGD2), an issue that has been flooding his system with all kinds of symptoms for a long, long time.

We first heard of this syndrome while we were out at the Arkansas clinic last year, a 7 month journey out there that, at the time, often felt frustrating and fruitless. The results we got Friday say otherwise. The connections we made at the Spero Clinic with doctors and patients led us to schedule the appointment that seemed-at the time-to be just another “shot in the dark” many months out. That’s the appointment we just had in New York where these tests were successfully run.

While Heidi will likely post more details in the near future, what you need to know is that our whole approach can now significantly shift. Whereas before, we were working backwards by trying treatments, surgeries, meds as solutions that would hopefully one day reveal Landon’s elusive, core unhealth.  Now that the root issue has been clearly identified, we can attack it with a much narrower, well-researched strategy under the careful oversight of a specialist who has effectively been dealing with patients with this diagnosis for almost two decades. In summary, we go from “what is the core issue” phase to “what is the combination of solutions” required.

To say, we have seen a glimmer of hope come back into Landon’s eyes, voice, and heart-while still navigating all of the pressure and depression-would be the understatement. As pictured above, he spent several hours at our dining room table this past weekend just talking through the diagnosis that clearly left him feeling validated/understood like never before and writing out “what we need to be ready to discuss with my doctor the next time we meet.” That bright Saturday was like no other that our little family has known in a long time. We just talked and rejoiced in this major breakthrough. We reveled in Landon’s precise diagnosis and the corresponding symptoms it produces that uncannily describe almost every struggle and pain he has suffered. That appointment is the day before Thanksgiving (11/25).

Until the next appointment, he is starting to try a few recommended meds to journal how his body responds to them. (It is a process of elimination that will take awhile and likely result in a combination of several uniquely suited to him that will calm and steady his mast cells moving forward.) From everything the research and specialists indicate, it is just a matter of time until Landon will begin to see some improvement. So we choose to hold on and hope a little longer.

A few thank you are in order again at this interlude:

  1. Thank you to those who have stuck with us through this journey when it must be tempting to grow weary of or cynical about it all. Instead of offering unsolicited advice, judgment, or silence to fill in all the voids of our uncomfortable and unanswered questions, you have simply/profoundly loved us right where we are.
  2. Thank you to those who continue to check in on us and make your no-agendas support and love so palpable. The unsolicited financial support that still comes our way from time to time helps underwrite so much of the costs of Landon’s travel and treatment and allows Heidi to continue to make her full-time job being his caregiver, advocate, etc. for much longer than we originally anticipated.
  3. Thank you to those who give us grace to focus primarily on the wellbeing of our son/family…even at the expense of who/what we normally would be for others (though we are doing our best to keep serving and connected to others as these posts attest). With so little extra relational bandwidth for obvious reasons, it means the world to us that you don’t make this more about your very real interests than our son’s more-urgent needs. This especially applies to our extended family and North Life church family who have had our back from the jump.
  4. A special thank you to my dear wife Heidi who thoroughly did the extensive research and persistently fought for this diagnosis with all of her being. There is nothing like a momma-bear to fully manifest the fierce, tenacious love of our God in this far too indifferent, “you’re on your own” world. What a privilege to have a front row seat to see firsthand truly unconditional love that knows no bounds…creatively cooking food that will stick to our son’s lean frame, supporting his fragile emotional, psychological, and spiritual interior-often in the middle of the night, and stirring into it all more than your fair share of tough tears. The boys and I love you more than ever.

Please pray for patience and wisdom…after exhausting every intrinsic reservoir of both that we previously possessed. With that being said, we have a renewed, God-granted confidence that our motto, “Health For Landon” is still possible and closer than we’ve dared dream in quite awhile. Why do we keep sharing publicly all of the messy, prolonged journey? For others that have no voice or perspective to keep them going in similar or more intense struggles. May this post also give hope to others who are tempted to give up in the midst of prolonged, chronic illness, relational dysfunction, spiritual wandering, and the like.

At this key juncture in our journey that the Lord faithfully oversees and gently guides, we join Scott Smith who prayerfully responds to the familiar, so-applicable-to-our-situation verses of Proverbs 3:5-6:

“Lord Jesus, some decisions are no-brainers,’ and some require nothing more than sanctified common sense. Others tie us in knots, rob us of sleep, and keep us second-guessing. These Scriptures remind us that our choices aren’t sovereign, only you are. (Big Hallelujah!)

We have every reason to trust you with all of our hearts, Jesus. For you created us for your glory, graced us with full salvation, are ruling over the kings of the earth, and are working in all things for our good. You aren’t pulling for us from afar; you’re shepherding us where we are.

Jesus, make our ways straight as we seek to honor you with the decisions in front of us. Open doors we can’t shut, and shut doors we can’t open. Decisions that impact our relationships, our vocations, our health, our finances, our future, (and friends, whatever else is ‘on your plates’).

Lord Jesus, we are grateful to know life isn’t primarily about making the right decisions, but trusting the right Lord—and that is you. By faith, we lean as fully upon you as we know how. So very Amen we pray, in your merciful and mighty name.”