back at home!

wow! we are so happy to be back at home — and lewis is especially happy!! he has been busy doing all his favorite things: crawling around the house like nobody’s business, eating so many solid foods, and dancing along to music.

we got back home on sunday afternoon. great flight home! lewis slept the whole way in my lap & woke up ten minutes before we landed. our little perfect boy! we were so blessed to have seen family & friends who took GREAT care of us while we were in SF, we feel so lucky & grateful for how they supported us.

it seems like lewis is dealing with the opposite of diabetes insipidus, where he isn’t peeing enough. we are going to get his levels checked tomorrow, but since he still has some lingering cold symptoms, we have to get another negative covid test (he has had 3 in the past 11 days) so we can be allowed in the hospital. covid has been making everything so much harder.

other than that, lewis is in good shape & in good spirits. he is pretty much sleeping through the night again & is his normal, happy self. we are still waiting for his eye to get better. the doctor said that it will take up to 4 weeks for us to know if the procedure relieved any optic pressure for lewis. in the meantime, we are patching his right eye for at least an hour everyday so he can maintain his vision in that eye.

things have kind of turned into a waiting game, which is what i think a lot of this journey will feel like. we are having a hard time celebrating us completing his first procedure or the first step, because it feels like we are waiting for the other shoe to fall. there are so many things we can only hope for, but we are just waiting until symptoms get bad enough that we have to do something - like if his optic nerve still doesn’t improve after the procedure or if the cyst starts regrowing. i know we should be celebrating making that first step towards healing or at least deciding on a care plan & team — we are thankful for are those things, but it doesn’t feel like we can step back and take a breath yet. but we will, eventually.

if you could pray that we could feel god’s hope in the next bit, we would be very thankful. i think that we both felt god’s peace during these past few weeks, we are very grateful for that. we are so thankful for the community, all of you, that have risen up around us to carry us through this in the past week - so very thankful. i could use a bit more of god’s hope to hang on to.

our prayer request is still for complete healing of lewis’ body - the healing of the new incision, his diabetes insipidus to fully resolve, the tumor & cyst to shrink, for pituitary restoration, for his optic nerve to be relieved & vision to be corrected, & everything else.

thank you so much for praying that with us, and for all the gifts, encouragements, cards, generosity, and love!

recovery

hi everyone!

thank you all of your prayers, texts, & messages that you sent us these past few days - they each mean so much to us & we are so thankful!! we feel so supported & not alone through all of this.

yesterday had some complications, but overall went well. the cyst did not pop on the first go around, so they were almost done with the procedure when they realized that - but they were able to go back in while lewis was still sedated & puncture the cyst wall with something more pointed. that was very stressful for us, faced with the possibility that the goal for this procedure couldn’t be obtained… VERY stressful & considering our options and what that would mean going forward. but god really showed up in that final hour and helped the procedure go successfully & overall smooth.

we are currently in the ICU for lewis’ recovery. there was a small chance of him developing diabetes insipidus, a hormonal condition that can be triggered where it is difficult to maintain hydration levels (ie. too much/too little peeing & being thirsty). unfortunately, lewis has developed this. please be praying that is just temporary & will resolve itself within the next few hours. we will stay longer in the ICU so they can closely monitor these symptoms.

he had some sudden swelling after we go to our room yesterday, which was scary, but it has gone down & seems to be doing better.

recovery is HARD. it is hard to see our little boy being so tough. he isn’t getting much sleep as they have to check his vitals every few hours (he is currently napping now - yay!). we brought a LOT of toys from home & it has made his room a lot brighter, along with a balloon & cards from friends. they also brought out a play mat for lewis to sit on, we just have to manage all the cords that he is connected to while he is moving around.

thank you for supporting us & please continue to pray for our sweet little boy as he recovers. for swelling to stay down, his diabetes insipidus to resolve, his optic nerve to relieve itself, & for great healing for everything else. we love you all! xo

surgery tomorrow

our first surgery for lewis’ craniopharyngioma is tomorrow morning, wednesday september 1st. we arrive at 6:30 & surgery starts at 8:30am. it should be done around 1pm or so. please be praying for god’s miracles!, our surgeon + team to be super blessed with god’s presence, everything to go better than expected, & a smooth recovery for our sweet little boy. thank you for lifting us up during this time, we are very thankful.

last minute concerns

hi everyone on Team Lewis!

we are coming in hot with some prayer requests. :) lewis woke up with a runny nose today, which sent me into a spiral of anxiety. fortunately, lewis can still have surgery with a runny nose, as long as he doesn’t have covid! we are getting a covid test tmrw evening (hopefully we can sneak one in earlier) and hopefully it will be negative & we can have some peace of mind. & we hope it doesn’t develop into something worse.

it’s things like getting a runny nose a week before his brain surgery that send me to the depths of despair (along with his initial diagnosis at 10 months, his arm mishap….). and then luke and i were really not communicating earlier this week, plus some other smaller things with that just made me feel like that things were really not going our way. i was starting to believe that things haven’t gone our way since this journey really got going in the middle of july, and if there is a chance for things to go wrong, they will with us. i didn’t realize i believed that, until i almost said that out loud to our neurosurgeon today.

but then i came here to ask for everyone’s prayers for protection & support, and to update y’all with what’s happened since last time and i realized that there are so many good things that i am not paying enough attention to:

• surgery got pre-authorized by insurance

• we were super blessed with housing in a dream location, within walking distance to the hospital & a dream in-person support team

• great meeting with lewis’ neurosurgeon today whose approach totally aligns with ours, we feel so confident in him & great about our procedure

• arm is still healing, but looking better

• our friend taught us how to use infant massage to relax lewis (for in the hospital)

• we have met with people who experienced god’s healing & have prayed over lewis

• we are so well supported in every possible way, it’s insane - by the people we are closest to & the people we would least it expect it, we are so thankful

so after looking at that list, i know that “if there’s a chance for things to go wrong, they will” is a lie that i believe. it is an easy lie to fall for & one that takes a lot of effort for me to fight off consistently. so, please pray that luke & i can fight it and hold onto the goodness of god. please pray for more protection over us from any more lies, protection over our health & that we can make it to surgery, through surgery, & out of surgery in good emotional/physical/all-sorts-of health. and prayers that lewis’ runny nose goes away, symptoms don’t get worse or develop, and that he is covid negative! we are so close to surgery, but i am also just one step away from losing my mind about anything going wrong lol. thank you all for praying for us.

in other news, lewis is developing SO quickly & learning so much so fast! on monday he started pulling himself up to stand. & yesterday, he started crawling on his knees & he learned how to sit down from standing. he has also started waving & is really into dancing with his arms. he also loves kissing the bunnies in the book we read every night & today he kissed the bears for the first time. our sweet little boy is learning so quickly. he is going to be 11 months this saturday! i can’t snuggle him enough.

thank you so much for thinking of us & all your prayers! it truly means the world to us. we love you so much!

from our goumi kids photoshoot - we LOVE the goumi team & they love lewis!

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

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

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

top of 2018

merry christmas to you & your family! may god cover you with christmas blessings.

this year, we moved to southeast portland & adopted the sweetest white cat named kitz. luke turned 30 (!), and rachel started her own stationery company, everglow handmade. we are thankful for how each of you loves and supports us. here’s to 2019!

LUKE

songs
1 cardi b - invasion of privacy
2 beach house - 7
3 kids see ghosts - self-titled
4 dirty projectors - lamp lit prose
5 ariana grande - sweetener
6 kamasi washington - heaven & earth
7 wye oak - the louder i call, the faster it runs
8 janelle monae - dirty computer
9 troye sivan - bloom
10 screaming females - all at once

RACHEL

songs
1 the national - empire life
2 kacey musgraves - slow burn
3 sufjan stevens - the only thing
4 stars - one day left
5 spoon - do i have to talk you into it
6 rostam - bike dream
7 lcd soundsystem - oh baby
8 the new pornographers - high ticket attractions
9 troye sivan - bloom
10 phoebe bridgers - motion sickness
audio adrenaline - glory
i have never been less into music

video
1 over the garden wall
2 maniac
3 ugly delicious
4 steven universe
5 glow
6 queer eye
7 the office
8 to all the boys i’ve loved before
9 freaks & geeks
10 money heist
black mirror - uss callister
all the ocean’s movies
sherlock
i can’t believe i watched so much tv

live shows
stars
love cirque du soleil
rob bell
andrew bird
call your girlfriend
janelle monae
mountain man
beatles show was out of this word, we talked to torque & told him accidental lies

(audio)books
1 what it means when a man falls from the sky
2 a praying life
3 essentialism (a)
4 life-changing magic of tidying up (a)
5 spark joy (a)
6 outliers (a)
7 the collapse of parenting (a)
8 little fires everywhere
9 the subtle art of not giving a f***
10 the hate u give
audiobooks are the freaking best

podcasts
1 dear sugars (goodbye!)
2 lore
3 overshare
4 second life
5 call your girlfriend
6 limetown
7 jen gotch is ok…sometimes
8 startup
9 goaldiggers
10 raw milk

places
jan - las vegas
mar - houston
aug - alaska
sep - backpacked in jefferson wilderness area
dec - seattle

notes
christina tosi
dpe
i miss tj’s & nw

lincoln city

had way too much fun cooking & cleaning & putting together ugly puzzles this weekend

third christmas

we celebrated our third christmas together and are happy to announce that we are more in love than ever, even though we didn't get a christmas tree because i didn't want one. we just used our fiddle leaf tree as a christmas tree, dressed it up with some tinsel and called it good to go. the year earlier, our christmas tree died almost immediately after we bought it and i just couldn't go through that heartache again.  -R