the past three and a half weeks have been incredibly difficult for our tiny family.
how quickly your whole world can change; it is frightening & humbling at the same time.

on july 13th i took lewis to the doctor. we had noticed over the weekend that his right eye had been crossing in. i thought i was probably over-reacting, so i didn’t even get an appointment scheduled right away. we got a spot at the end of the day on tuesday, i had no qualms - just wanted to make sure everything was okay.

our doctor ended up calling us right after i got home from the appointment to send us to the er right away. luke had literally just started boiling the water for the summer pasta he had all prepped to make, with all of the groceries that we had just bought the night before. i packed our diaper bag with a few toys for lewis & some extra formula in case it took a while, but the worst case in my mind was that we would get home late that night and i was looking forward to finally getting some work done the next day when my mom-in-law came over to watch lewis.

we ended up getting admitted to the hospital after a quick mri found a mass inside lewis’ brain. the news that lewis had a brain mass wasn’t shocking. lewis had been diagnosed with hypopituitarism (when the body doesn’t produce enough hormones) when he was 3 months old. he had been in the 2nd percentile on the growth chart & had struggles with lingering jaundice. while it was really hard to hear his initial diagnosis, he started growing so well once he got on the meds - he started smiling & quickly moved up to the 60th percentile. we had monthly blood tests to monitor his levels, but we found the best phlebotomist & overall, it was easy to manage. so, with his hypopituitarism, we always knew that it was a possibility that something was sitting on his pituitary gland disrupting it but we still weren’t ready to hear that news.

we got admitted to our hospital room around 2am. it was a hard night. lewis was really unhappy. i was really upset. & things just got worse. it is a horrible & very long story, but early that morning, lewis’ IV became infiltrated in his arm and ended up needing emergency surgery. it was a really horrible & painful experience that hurts us to think about. lewis will unfortunately have the scars to show for it. amidst all the pain, one thing i will remember is how that right before surgery, lewis was just so happy to be in his dada’s arms & he was smiling at the animals that they had painted on the walls. and then we got a really good doctor, who we pretended was his korean uncle & took care of him while they saved his arm.

lewis with all his gifts & toys from home during our hospital stay

two weeks after our five-day hospital stay, we went in for a CT scan which revealed that lewis had what we had hoped god would save us from - craniopharyngioma, a noncancerous brain tumor with a high rate of recurrence that sits on lewis’ pituitary gland, optic nerves, & hypothalamus. we have been grieving. we are grieving. what this means for lewis & his future. while we are scared to hope with expectant eyes, we are ever so thankful for the friends, family, & community who we don’t even know us that has carried us these past two weeks - with prayers, phone calls, meals, texts, cards, toys & stuffed animals for lewis, and donations - as we are not strong enough to hold ourselves.

we have gotten plugged into some good facebooks groups that have helped us navigate this time & pointed us to the best doctors in the country who focus on this diagnosis. we are thankful that we have been able to connect with these doctors this past week. they are all incredibly kind, supportive, & knowledgeable. one consistent thing we have been hearing from them all is that there is no right/wrong answer. lewis’ disease is very rare, and even more so due to his young age. most patients are diagnosed between the ages of 5-14 or in their late 70s. each hopeful option for lewis is full of unknowns & risks due to his age.

we have oh-so-many prayer requests right now, but one of the top ones is that we would have wisdom & clarity regarding which path to move forward in. we will be making hard choices for lewis & are asking for the lord’s clear direction. our next most prayer request is for lewis’ eyes. the tumor is pressing directly on his optic nerves. at this point, the damage looks like it could be reversible - we are holding onto this and asking for everyone to cover his eyes with the lord’s protection.

the rest of the list of goes on & on: the lord’s favor, lewis’ resiliency & ever-present joy, full restoration of lewis’ pituitary function & body, emotional health/support for me & luke, provision for finances & medical bills, that we would be able to have discernment to choose & find/work with the right doctor (especially schedule-wise), that the lord would be faithful to us & that we would trust in his love for lewis, and most of all, a shrinking tumor and the ultimate healing of lewis’ brain by any means in jesus’ name.

we have been incredibly overwhelmed & are so thankful by everyone’s support. it means the world to us & more than you can ever imagine. thank you. our dear friends have set up a meal train (we will open up more dates when we schedule surgery or anything else) and a gofundme (which we will update when decide upon next steps - surgery or otherwise). thank you to everyone who has contributed to those & to all of those who have reached out. we are desperate for hope/love/light, so please text me if you ever are thinking of us, or a verse/prayer/song/passage that you think resonates - we would love it & don’t worry, you can’t ever text me too much lol.

if you’d like to keep up with us, you can click here to ~subscribe to our posts by email~ from the link at the top. thank you for your support & love. we are incredibly thankful for all of you & we love you so much.

from our time at the beach this past week! xo