hello from the larsens here in palo alto —

thank you so much to all of you who have given, supported, encouraged, and prayed for us these past weeks. it’s meant the world to us, and we’re overwhelmed by the love. it is a huge blessing to not have to worry about travel expenses & everything while we are dealing with the stress of preparing for surgery. thank you!

we arrived in san jose on wednesday, and got settled into our room at the ronald mcdonald house at stanford, which has been such a blessing that we got in!

thursday, we were able to get imaging & labs. unfortunately, lewis had to fast for his anesthesia for the scans from midnight until 4pm due to some delays at the hospital, which was so sad and hard. he was managing it great all day, but by the end he was crying because he was so hungry. he did a great job though & was so tough. his favorite thing to do while waiting was to watch a recording of church & sing along to “how great is our god” - one of his favorite songs. it was so precious we wanted to cry.

but overall, thursday was not a great experience for him, and we are worried about how it will affect his time in the hospital next week. please pray for that!

we spoke to our doctors on friday at our pre-op. they were lovely & we feel great about working with them. it was so nice to meet them, but reality really set in during the appointment. the surgery, recovery, & hospital stay seem so daunting. anything could happen! we have a rough idea of what we can expect and got our questions answered, but you know how things go.

he also caught a runny nose / cough that seems to be coming / going. we need that completely gone by monday (and to not get worse) to make sure it’s still safe to have the surgery.

below we have just brain dumped some of the main highlights & a lot of our prayer requests. pick some or all to pray for, our list is never ending! we are full of the joy of the lord because we would rather laugh than cry lol. thanks for reading!

main updates:

surgery on monday, june 5th
check in at 7am
surgery starts at 830am
everything is anticipated to last a little more than 10 hours (so maybe 630pm finish time, this includes prep, ENT (ear nose throat) access, brain surgery, ENT close access, imaging, etc.)
anticipated hospital stay is at least 5 days
2 weeks post-surgery in cali & then get cleared to fly home

scans showed that the fluid around the catheter has formed into a secondary cyst since April that is pretty large and in a bad spot. if this has tumor cells in the lining, it could be something that can’t be resected from this surgery, and could grow back if not entirely removed. here are our prayer requests around this 2nd cyst:

would fall away from hypothalamus and not cause any damage to this area
that it would not be part of the tumor, and instead just a cyst that deflates & is easy to deal with
that it wouldn’t grow back after drained
surgeon would be able to get sample of 2nd cyst to determine if it is a craniopharyngioma or not

main cyst/tumor prayer requests:

that it would be completely removed, with none left over
that by removing it, would also kill the secondary cyst
that it would fall away from hypothalamus
not be attached to the optic nerve or pituitary gland
no recurrence
no damage to the hypothalamus (ie. causing insatiable hunger, personality changes, & anything else)

ommaya catheter:

guidance / doctor’s discernment on whether to keep or remove it (if possible/safe to remove)

major post-surgery risks and prayer requests:

CSF leak (brain fluid liquid)
air reaching the brain

hospital recovery:

waking up from anesthesia: no emergent delirium, that we would be able to be with him when he wakes up. that he would be himself.

lumbar drain will be placed at the bottom of his spine for 3-5 days to collect any fluid leaking from brain, pray against any infection developing, against too much fluid leaking, lumbar drain will prevent him from moving around too much & keep him in the hospital bed while he has it.
nose flap reconstruction: since they are going in through his nose, they need to reconstruct the nose flap to avoid CSF leaks. please pray that they can reconstruct this from the nose flap, if not they have to take tissue from his leg, and if that doesn’t work, then the side of his head. this has been a problem for some patients getting this same procedure, especially around his age.
managing diabetes insipidus (DI) & figuring out the dosage so he is properly hydrated. getting a handle on DI is what keeps patients longer in the hospital. he will also have a pee catheter, please pray against infections from this.
neuro-checks will be every hour for at least the first 24 hours: pray that lewis will be able to do those, doctors will be able to check everything that is off, and that lewis will be able to fall back asleep quickly from those
after we are discharged from the hospital, we will have a 2 week post-op appointment where they will see if we are clear to fly home
that we would have a great nurses who we get along with & take amazing care of lewis
nasal drainage: may have a bandage taped to his nose for a bit, that he tolerates this well.
sinus stays moist/humid to promote quick/good healing
that lewis has the ability/patience to understand and would cope well with what is going on. that he could have fun! that he would not get discouraged & that he would stay positive.
that we would all be covered with the hope, love, & strength from the lord

long term recovery:

if his pituitary gland is removed in surgery, he will develop diabetes insipidus (inability to regulate fluids, this is the most likely case), which will require a new medication taken multiple times a day. there will also be a learning curve for us to manage/monitor this. managing this is much easier if lewis maintains a good thirst mechanism.
weight gain: can be caused from damage to hypothalamus and long-term use of steroids (which he will be on)
no long term personality / mood changes: we have been told that there are some short term emotional changes as this is the body’s way of dealing with a traumatic surgery, prayers that lewis & us can cope with them & that any changes would be limited
vision would improve, particularly peripheral
central vision would be maintained
no need for proton radiation (risks at his young age)
clear next steps

ultimate dream prayers:

no recurrence of any cyst
pituitary function healed / no hormone deficiencies
eyes would uncross
vision would be restored
complete healing for lewis

for us:

that we would stay calm, hopeful, and trusting in god no matter what
for positive relationships with the nurses and doctors & clear communication
that we’d stay united and be able to care for lewis well while in the hospital

we know that’s a lot, but it can be helpful to name everything we’re up against. there are all kinds of chances for things to go wrong, and still, plenty of things that could go right too. we believe we’re in the right place, doing the right thing — and the lord will carry us through no matter what.

thank you for all of your prayers & support! xo