the first next step

hello friends!

thank you for all your love & support since our last post. we are so thankful knowing that you are with us in this journey.

we have been dealing with a lot of uncertainty & fear of the future, but we have finally come to a first step in treatment and that feels like something.

we are looking to have surgery at UCSF on September 1st. out of all the options we heard, we are moving ahead with one of the less invasive options in the hopes that it will buy us more time so we can do a bigger surgery when lewis is older. of course, nothing is guaranteed so this where we will be asking for a lot of prayer!

the procedure lewis will be having is to decompress & drain the cyst part of the tumor, in hopes that this will relieve pressure off of his optic nerve & reverse the vision loss in his right eye. we are also hoping this procedure will provide some information about the character of the cyst/tumor, like if it’s stuck to anything & watch how quickly it refills with fluid / grows larger (if & when). that will all be useful to know when we eventually pursue a full resection.

although we feel this is the least risky option to start off with, there are some big unknowns we are looking at. one being how quickly the cyst refills after draining, which could be as fast as two weeks or as slow as many years. how fast it refills will affect future treatment & the hard choices we will be making. also, we know the tumor has calcification but we don’t have know much. if the cyst/tumor wall is too calcified it will be too ‘stiff’ & it won’t change shape/drain very much. we are a bit nervous about those factors, but overall have peace about our decision knowing that there is no right answer. we are trying to be as least invasive as possible while lewis is so young. prayer requests: that surgery would go well with no complications, lewis would have a quick recovery, the tumor would not be attached to any structures in the brain, that it’s walls would not be ‘stiff’ so it would collapse & drain well, no tumor regrowth, restoration for his right eye/vision.

we will be flying down a few nights before surgery & hope to be in the hospital for two nights. only one of us can stay overnight with lewis, and we are a little nervous after our last hospital stay & the emergency arm surgery lewis had to go through. prayer requests: our hearts & anxieties to be calm, that we would get a really great care team who we can connect & get along with, that lewis would be okay in the hospital emotionally (he has been having bad stranger danger & doesn’t like being forced to do things he doesn’t want to do).

also, lewis’ arm wounds got infected last week. his body isn’t reacting well to the dissolvable stitches. :( please pray for continued healing over his arm.

we have many more prayer requests that we can’t even begin to name, so please lift whatever comes up to your heart up in prayer. oh & one more i just thought of, we are waiting for insurance to approve lewis’ surgery. if you could pray that it gets approved quickly, it would be great now to have to worry about that!

it has been a lot for me learning how to navigate the health care system & to push for the best care for lewis. it’s against my nature to ask for what i need and to push hard enough to where i inconvenience others, so i am really being forced outside my comfort zone. while talking to doctors & planning for surgery, i am finding that we are always have to ask the hard questions & prepare for worst case scenarios. it’s hard to get out of the fear that that mindset creates & still hope for the best and stay in the present, enjoying our son for who he is now & not getting consumed by the fear of everything we could lose. it is a difficult dance to do & i am constantly reminding myself to take it one day at a time - because today is all we have, right?

surgery is scheduled at 8:30am on september 1st, if you could think of us then & pray for the skill of our surgeon and the lord’s care over lewis.

thank you to everyone who has supported us financially. we feel very lucky that we are able to travel for Lewis’ care, and that we can focus on getting him the best treatment.

many of you have been asking what we need right now & how you can tangibly support us. we are so grateful for that! we’ve added dates to our meal train for while we’re in SF & when Lewis is back at home recovering. we thought this would be a nice way for us to stay connected & feel supported by everyone, since we will be traveling by ourselves for Lewis’ surgery. it will really lift our spirits & help us feel close & supported to all of you who love us so much! you can see our meal train here.

& we always love the encouragement. send it our way whenever you think of us. we love you all! xo

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day by day

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

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

from our time at the beach this past week! xo