it’s been a whirlwind of chaos over here in our home! we got scheduled for surgery on june 5th, it starts at 7:30am and is anticipated to be seven hours. our neurosurgeon will be attempting to safely remove as much of the tumor as possible. please be praying for a miracle & that he would be able to get all of it. if any of the tumor is left behind, it will grow back & will most likely required radiation. this tumor is a beast & god is our only hope.

with surgery, there is the biggest risk of damage to his hypothalamus, hunger mechanism, & weight gain. his eyes and vision are also a concern during surgery. the surgery will most likely result in the removal of his pituitary and require additional hormone replacements for the rest of his life. lewis is already on daily medication for cortisol & thyroid, he will need to start on growth hormone, testosterone, and others. he will also most likely incur diabetes insipidus, which is a condition where the body cannot regulated fluids on its own. it will require multiple doses of medication daily to keep him balanced to avoid dehydration or his body retaining too much water. growth hormone will also require a daily shot (not fun) and we hope to start that as soon as possible post-surgery to get him growing again.

we have had a lot of support from other cranio & cancer parents, we are so grateful for them walking through this with us & sharing their experiences with us. it is so hard. after we scheduled surgery, we got cold feet, and we had begun to question if we were making the right decision. we’ve been able to work through it & have peace about moving forward. it feels like the only thing more scary than surgery, is not going through surgery and having the tumor continue to grow and cause new symptoms - terrifying! right now, we feel as good as we can feel about moving ahead with surgery.

we are going down to stanford for our surgery, and they have been really great so far. we have our flights & lodging for the first while figured out, which feels nice to have that taken care of. our surgery is on monday 6/5, we will fly down on wednesday 5/31 the week before for scans & pre-op appointments. we will be down there at least until our follow-up appointment on 6/20, but hopefully we won’t be in the hospital the whole time before then.

thank you for reaching out to us & sending us encouragement. it means the world to us and brings great comfort to know we are not going through this alone and have lots of support. thank you!

we have updated our mealtrain with opportunities for prayer & meals. we would love dedicated prayer for lewis + our neurosurgeon + his medical team all day during the day of surgery & during our appointments. we also have our gofundme if you would like to donate there for any random expenses we may incur. we are hoping that we will be able to stay at the Ronald McDonald house for the duration of our stay, which will provide assistance with food in addition to providing affordable housing.

if you’re in the portland area, we will most likely have a prayer gathering on sunday, may 28 in the afternoon. we would love if you could come & will post more details about that when we finalized.

in the meantime, we would love prayer for:

no neurological symptoms to develop before surgery for lewis
most recent scan showed pressure is developing on his midline structures (right lateral 1st ventricle), creates a potential for the first ventricle to get bigger & risks blocking blood flow and causing hydrocephalus, which is a bad symptom with side-effects & would not let us fly in an airplane down to california
a cyst around lewis’ catheter is getting bigger
continued peace & covering by god’s presence
all of the logistics to work out & fall into place!

until then, thank you for lifting us up & covering us with prayers. praise jesus for the peace we have, the plans that have fallen into place, the accommodations that have been made, we are grateful. we have lots of fear but are holding to hope for the best!