wow, there’s so much to share about the past six weeks since we’ve been home (we can’t believe it’s been that long!)

first, we welcomed baby brother Emmett last week! both baby & mom are doing well, happy, & healthy. lewis loves being a big brother & he is doing a great job at it! we had a hard birth + nicu stay after lewis’ birth, so it was nice to see things redeemed with emmett’s arrival. thank you for all of your prayers!

it was weird passing our first month home post-stanford! it felt like we had been home much longer, but also like we just got back. at the end of july, we passed the two-year anniversary of Lewis’ craniopharyngioma diagnosis. it is amazing to look back & see what god has carried us through & where we are now, i did not think we would be able to have such a good post-surgery result, praise god! we are such different people from two years ago, it is hard to look back on, but we have found small treasures on this difficult journey to keep with us.

we have been celebrating Lewis’ good news with so many people, he loves telling people his “brain tumor is out! no more ommaya, no more lumbar drain, no more IV!” he loves celebrating this. we are trying to live in the moment & celebrate the goodness of god now, and trying not to live in fear of the future and the possibility of recurrence. we know families who have heard “gross total resection” and that “they got it all”, only for the tumor to come back months or years later. it has been tough to balance that, but nothing that we haven’t faced in these past couple months.

Lewis has his first full MRI next tuesday morning, 8/15 at 10am. it will be the first time that Lewis & Luke will be going on their own, I will be staying home with Emmett and am sad about us not being able to be all together. we would love your prayers for anesthesia to go well, for no brain tumor to be detected by the MRI, and for no complications with sedation & his recent nasal surgery.

the next day, wednesday 8/16, we will be going back to the oncology clinic & are having a little party to celebrate the end of Lewis’ infusion treatments! we haven’t seen our Portland care team for six weeks! it has been such a blessing to not go into the hospital as much, but we definitely miss them so it will be nice to see them. we are going in to review the scan results, so we are praying for good news to accompany us as we celebrate the end of treatment!

i was looking back on our stanford prayer list, and sooo many have been answered - thank you all so much for your prayers! it is amazing to see how god covered us:

we were able to have surgery, despite the stuffy nose & it went sooo smoothly, “perfectly” as our surgeon said
we had great nurses + care during our 9 day stay in the hospital. we all had a lot of fun the day we got discharged!
there was no damage to lewis’ hypothalamus! no hypothalamic obesity (insatiable hunger)
the 2nd cyst was not a tumor, probably just fluid build-up from the ommaya catheter & taps we were doing - yay for it not being another cyst/tumor!
gross total resection of the tumor!
it was not attached to the optic nerve!
no personality changes! once we got back to see lewis, he said some things immediately that let us know he was still HIM (one of them might have been “lightning mcqueen” lol), that was a huge reassurance & so comforting - we are so grateful to have the same boy with us through & through
ommaya catheter was removed!
nasal flap healed well! tuesday’s MRI will confirm, but as of now no complications!
lewis has a GREAT handle on diabetes insipidus (his body’s inability to regulate fluids/pee). he knows what his new medicine does, he can tell when it wears off, and knows to drink more water when it does - he’s so amazing!
our 2 week post-op appointment was so smooth, and we were able to fly home right as scheduled!
we were able to have housing at Ronald McDonald House & even got to spend a night in santa cruz!
his vision has improved! & has been confirmed by vision tests - yay! most likely, all improvements in his vision will been seen in the first 6 months post-surgery, so we are continuing to pray for even more improvements in the next 3 months.
and so many more. we kept hearing that Lewis’ healing was the “best case scenario” and we know that it was all due to the grace & mercy of god + your prayers.

Lewis is finally getting back to sleeping + eating, he is doing so well post-surgery - it’s crazy! hard to believe that he just had major brain surgery, we are so grateful to Lewis’ surgical team at Stanford & all the advancements they’ve made in the past few years, led by Dr. Juan Carlos Fernandez Miranda. here are two videos that we love from him (one, two) - he is our hero! God truly led us to him & we are so thankful for his dedication, compassion, & care.

endless thanks to all of you for your prayers, financial support, & encouragement. we have felt such peace & feel so lucky to see the healing power of god so close, and the power of prayer and community. come by anytime to meet baby bro - we love you all!