Portland toddler with brain tumor celebrates one year being tumor-free

wow! it was a fun surprise to learn that they were going to air Lewis’ segment today. KPTV Fox 12 came by to our house on friday to interview us. it aired this monday evening a few times, and it should be airing every hour throughout Tuesday morning - so cool! let us know if you catch it on tv live, we’d love to see the pics + videos :)

it is so special to see our sweet brave boy’s journey shared on tv. we are so proud of him! it was fun to share his story, especially coming off his clean 10 month MRI that we’re still celebrating. lewis is especially happy that everybody got to see him driving his mercedes lol.

thank you for being here & supporting us through this crazy thing called life! we couldn’t have done it without you. praise god for healing Lewis!!

clear at 10 months

Hi everyone -

Thanks so much for praying for Lewis - we are so happy that his 10 month scans were clear - YAY! Thank you, Jesus. We will go in for his next scans in another 3 months, and if those are clear we will start talking about increasing the time between his scans - so great to just think about that.

Lewis had a little cough + congestion when we went in for his scans, but we were able to get them done & there were no problems. We had a great team on Wednesday for his MRI, it was a huge answer to prayer. His hem/onc team also helped us in prepping for that a lot, everyone is so great.

This June, we are excited to be celebrating the one year anniversary of Lewis’ big surgery by going back down to California for a fun visit. We’ll be doing a road trip down with a couple of fun stops along the way, and Lewis will be honored at the North California Brain Tumor Walk, which just happens to be the same week as his one year anniversary! Dr. Prolo, Lewis’ pediatric neurosurgeon, nominated Lewis and he will have a poster with his picture on the walkway leading to the event, which will be at the San Francisco Zoo. We can’t get over the perfect timing of everything! Lewis is excited for all of his grandparents to come with him to the walk & to introduce them to Ronald at the Ronald McDonald House haha.

We’d love to invite you all to join us on the walk as we honor Lewis & his bravery! Even if you’re not in the area, you can participate virtually by signing up at the link to be on Team Stanford & show your support. You can also get a t-shirt if you raise $70 by May 8.

Here are the details:
North California Brain Tumor Walk
June 8, 2024
San Francisco Zoo
Sign up with us to be on Team Stanford

Lewis is also going to be interviewed by some local news stations in these next few weeks about his big surgery - our little celebrity! We will keep you posted on when those segments air.

Oh, also - praise! Last week before the MRI, our insurance approved Lewis’ weekly growth hormone shot - yay! Such wonderful news.

One last thing we would like to ask for prayer for, Emmett had a reaction to eggs in early March that we took him to the ER for. He just got confirmed for an egg allergy this past week. If you could please pray that he doesn’t have any more allergies, we would be so grateful! We will be introducing foods at home & seeing how he reacts, so that will be a little stressful. We have some family history with allergies, so it would not be surprising if he is allergic to a few more things, but we are praying that he is not. Thank you!

Grateful for you all and so thankful for your support & prayers in the midst of your busy & full lives. The Lord blessed us with a lot of peace this past week & we hope he surrounds you with his same peace this week. Love to you all!

Lewis at his favorite place to celebrate - hotcake house!

MRI on wednesday

Hey everyone!

Just a quick update that we have an MRI this upcoming Wednesday, the 17th, at 7AM. This was a rescheduled appointment (it takes a really long time to reschedule these!) from last time when ours was canceled because Lewis was sick. It feels like it’s been hard for our family to stay out of sickness for very long in these past few months, which has been draining. Please pray that Lewis stays well over these next few days so that we’re able to get this MRI done!

As always, the week of an MRI we start to get those nervous feelings again — the doubts about Lewis’ healing and successful surgery, the feeling that this could start all over from square one again. We’re asking for the Lord’s peace to carry us through this week and up to our appointment with our doctor this Friday to discuss the scans. And, of course, for good news that Lewis is still tumor-free!

We’re also facing an issue with our insurance regarding growth hormone. We’ve been feeling so blessed that the growth hormone shot has been going so well, but last week we received notice that our insurance had withdrawn its coverage of our weekly injection, which we do at home. They claim to prefer a different medication, which is a daily shot instead of a weekly one. The idea of switching to a daily shot feels heavy and would be so much harder on Lewis. There’s still hope that our doctor’s appeal could overturn the decision, but it’s not looking super positive at this point. Even so, we’re asking this this would be overturned and that we’d find a way to continue on this current medication.

Thank you for those that have been praying for Emmett too! His surgery last week went well, and he’s been recovering great. We did recently discover that he hasn’t been growing lately, however, so we’ve been told to start feeding him as much solid food as possible. It’s not connected to the surgery, but it’s been a little worrisome. Since we found out, he has already been eating a lot more food & that’s made him really happy! We didn’t realize how much he loves to eat!

Thank you all for your love and support. It means so much to us, and we continue to trust in God for all our needs. This was going to be just a quick update, but as usual, there always seems to be a lot going on. Thank you so much for lifting us up to the Lord and for keeping us in your prayers!

a prayer request and our first adrenal crisis

Hi friends and family!

Thank you so much for your prayers since our last post. Lewis is doing really great with his weekly growth hormone shot - he’s such a tough kid. With six under our belt, we’ve already seen 1cm of growth! Lewis is always excited to measure himself, and we were so surprised that he’s already started growing. We were struck this week by how blessed we are to be able to do a weekly shot instead of a daily one, that we’re able to do it ourselves at home, and that so far he’s been handling it so well. Prayers answered already!

But last week, Lewis experienced an adrenal crisis — something scary we’ve always known we’d have to deal with eventually. It’s always represented the greatest danger to Lewis’ life, and it’s the reason we are required to carry around an emergency shot with us wherever we go.

On Tuesday of last week, Lewis started acting a little strange in the afternoon, and then began to throw up around 5:30pm. He began throwing up every 15 or 20 minutes, and it was getting worse and worse. With no other symptoms, we didn’t know where it came from or what was wrong. But it was the kind of situation we’d heard lots about from others with the same condition (induced by what we now know was the flu). So for the first time, we had to give him his emergency shot and take him to the ER. he’d already thrown up close to 10 times and was dozing off by the time we got to the hospital. In retrospect, we wished we made the decision to give him his shot earlier, as his body was clearly shutting down and he was throwing up the oral medication we were trying to give him. They got us in quickly, but it was so scary to be in that situation we’d always heard about and worried about. He wasn’t responding much by the time we were in our room, but they got him another big dose of cortisol, along with IV fluids.

After a few hours, he woke up and bounced back really quickly. We didn’t have to be admitted to the hospital and were able to take him home by around midnight that night. We were just so thankful to God that he was able to bounce back quickly and that he got what he needed early enough. All of us ended up catching what he had, and it’s made for a really hard week.

But we also know this won’t be the last time Lewis will need the emergency shot and a trip to the ER. It’s just the nature of his condition and the reality of not having a working pituitary gland that produces enough cortisol for his body naturally to deal with stress in the body. In this case, it was a stomach flu that caused his body to go into stress, and the vomiting meant he couldn’t take his extra dose of cortisol orally as we normally would do. We’ve learned a lot going through the experience this first time. Lewis does so well in the day-to-day that it can be easy to forget about how fragile his condition makes his body, and this was real wake-up call to that for us.

On a different note, we do have a prayer request - but for Emmett this time. This isn’t something we’ve told many people about, but he is having a minor surgery on the morning of April 1. It’s nothing too serious, but we’re sad he has to go through it and are mostly just worried about having to put him under anesthesia. So, if you could pray for us on that morning — that Emmett would have an easy time going under and waking up, that the Lord would protect his body during the procedure, that the whole thing would go smoothly, & easy recovery.

Lastly, we wanted to share a really cool opportunity we had to share Lewis’ story with the media team at Stanford, where we had Lewis’ tumor resected last June. It’s hard to believe it’s been almost 10 months since then! The article gives a good rundown of the surgery, the complexities of the tumor, and just how miraculous Lewis’ outcome really was. It’s also a really special opportunity for us because it was through a similar blog post about a kid (Ari) who had the same surgery & was close in age to Lewis when he had his. His family was a huge encouragement to us personally during the weeks before surgery via email, they are so kind & generous with sharing their experience. That post was how we first heard about Dr. JFM and his approach and the whole team at Stanford — and we pray that our story will encourage other families who were as desperate for hope as we were and even consider our amazing surgeon. Here’s the link: https://healthier.stanfordchildrens.org/en/doctors-remove-highly-complex-brain-tumor-through-toddlers-nose/

Thank you for all your prayers and support. Happy Holy Week and Happy Easter!

staying flexible

hi everyone!!

unfortunately, Lewis wasn’t able to get his MRI or his growth hormone (GH) shot this week due to the lingering cough + cold he still has. another exercise in staying flexible for us & to not let worry get the best of us.

we reschedule Lewis’ shot for next Tuesday 2/13, so hopefully he is feeling better by then & we can move forward with that. his MRI will probably be rescheduled in around 6 weeks, we will keep you posted.

thank you for praying for us! lewis was such a brave boy walking into the hospital & we are so proud of him. here is a picture of the boys in their favorite firetruck pajamas for now. :)

8 month mri

hello friends!

we can’t believe it’s been almost three months since Lewis’ last mri, and over half a year since his surgery! time is flying & we are loving every minute. emmett is a constant reminder of how much time has gone by, he has two teeth & is back-up scooting around our house everywhere - crawling is just around the corner.

every day since Lewis’ surgery has been such a blessing & it’s hard to remember the weight we carried with us before surgery. we were reading through our pre-op notes and WOW, so painful. there was so many heavy, dark unknowns that were on the table & it is so crazy that we don’t have to face those things anymore. praise god!

our amazing surgeon, Dr. Fernandez-Miranda posted the sweetest instagram post at the end of the year that made me cry buckets. (warning: last slide of his post has actual brain surgery footage). it is incredibly meaningful to know that Lewis’ case was significant to our surgeon. one of our greatest hopes is that Lewis’ experience & surgery will help & inspire other young kids who are diagnosed with craniopharygiomas.

View this post on Instagram

A post shared by Juan Fernandez-Miranda MD (@dr.jfm)

our story was also featured on the Candlelighter’s blog + mailer recently. Candlelighters is a national organization with a local chapter that we’ve been involved with. they provided financial assistance for us and have thrown lots of fun activities for Lewis to go, like the pumpkin patch & OMSI visits. you can check them out + support them here!

we also were able to share our testimony on stage at our church in october. it was surreal & meant a lot to celebrate God’s miracle with everyone. Lewis got to tell the whole church his “brain tumor was out!” one of our worship leaders wrote a song inspired by when she prayed for Lewis’ healing, & it was so special to sing that after we shared. it’s one of Lewis’ favorite songs now!

we have been working the past few months to get Lewis on growth hormone and we finally received the medication today. this is a big deal! we have also known that Lewis will need growth hormone supplement, but we were not able to start giving him this until after surgery. he basically hasn’t grown for over a year, so he definitely needs this, but we are just as nervous as we are excited. we are nervous about the weekly shot — the shot takes more than minute to give, like it has to be injected under the skin for more than a full minute. it will be painful & hard for Lewis to get used to. he is excited to start growing, but we are worried about how hard this will be every week & about any potential pain/side effects he might experience from the shot.

some praises we’d like to share: while it took us a long time to coordinate doses/pharmacy/payment, we did not have to battle with insurance to get this med eligible for coverage, we are eligible to receive financial assistance for this, and we were able to get on the weekly shot, rather than the daily shot. yay!

we have a busy week ahead: an eye appointment on monday, an MRI + follow-up appt on wednesday, and his first growth hormone shot on thursday!

here are our prayer requests:

• 8 month post surgery MRI on 2/7: Lewis goes in at 7:30am and he “does not want to do this”. we will speak with our neuro-oncologist right after to go over the scans. we know Lewis has been healed, but it is still nerve wracking every time he have to take a look inside. please be praying for clear scans once again! also, Lewis has a runny nose + cough that need to be completely gone by tues in order for this not to get rescheduled.

• growth hormone: we are giving Lewis his first shot on 2/8 at 5pm. please pray this is a good experience for him & an easy adjustment with no side effects. when he was a baby, he wouldn’t even cry or flinch when they accessed his port, but now he’s very bothered by needles (understandably!).
  

thank you for following along with us & for your prayers! we are so grateful.

good news

GOOD NEWS !

we are so happy that Lewis’ scans were clear today!! what a relief. Lewis was such a brave boy getting his IV today, since he doesn’t have a port anymore! he was very tough. wake up from sedation went very smooth, which is always great. we were able to meet with our doctor after to go over the images, which confirmed that there hasn’t been any growth or residual tumor. YAY. we will continue to get MRIs every 3 months until we’re one year out from surgery.

Lewis was so happy to see his nurses & oncology team. he was running around the lobby before we headed to a sushi-go-round (his request) for dinner. we are thrilled for our happy boy & so grateful to god for this good news. thank you for your prayers!

5 month post mri

hi everyone!

time is flying. lewis’ 5-month post-op MRI is scheduled for this wednesday, november 8th. how has it been 5 months since surgery? it feels like surgery was sooo long ago, but we can also just remember it like yesterday. while the past five months have been at true gift, scanxiety is setting in & we are worried that the comfort we have settled into since surgery could be ripped from us. but not in jesus’ name, amen! we are holding on to hope & trying to not think ahead too far.

we go in at 7:45am on wednesday and are hoping for an easy sedation, his first time in a long time without his port. and then also for an easy wake up & CLEAR scans of Lewis’ beautiful, healthy brain. we will have a consult with Lewis’ amazing neuro-oncologist later wednesday afternoon to go over the MRI, it will be nice not to have to wait for scan results. & it will be a treat for Lewis (& us) to see his team!

thank you for your continued prayers & covering us!

smooth sailing

just a quick update to say that everything today went really smooth. the port is officially out! even though there will always be more, this does really feel like the end of this part of lewis’ healing journey. we were at the hospital at 6AM this morning, and after talking everything through with the team, had a smooth and complication-free removal of his port. he was so brave and did so well!

even though this was a fairly common and simple operation, any surgery always feels scary to a certain degree. as most people with rare diseases and cancers will tell you, assurances that certain risks or symptoms are “very rare” just aren’t as encouraging as they used to be.

but really — we are so thankful to God that everything went well, so thank you all so much for keeping us in your prayers today. lewis woke up from the anesthesia better than ever, and having been up early and skipped breakfast, was almost immediately excited for hospital graham crackers, banana bread from starbucks, and dinner at the hotcake house (in that order). we drive past the hotcake house every day and it’s become his favorite restaurant, so he enjoyed a giant plate of hotcakes, bacon, and eggs. well deserved for this brave little guy!

goodbye port!

it’s been about 4 and half months since lewis was healed of his brain tumor. that was something we got to celebrate by sharing with our church family last sunday. lewis announced his good news, and we got to cry on stage in front of everyone while explaining just what these past six months or so have felt like. we also got to REJOICE with the rest of the church in lewis’ healing & that was just about the best thing ever. it was such a privilege to share what god has been doing in our lives & to celebrate with so many people who have prayed for us along the way. praise god from whom all blessings flow!

we’re also going to be marking the miracle by taking out lewis’ port that was placed in november 2021 (almost two years ago!). it’s crazy to look back at everything that’s happened since then — to see how young lewis was when we put it in and how far he’s come. 3 brain surgeries, 34 infusion sessions, & countless appointments & pokes that our tough guy has had to endure. the port has really been such a lifesaver & saved lewis from a lot of tough pokes - we are not looking forward to having his blood draws done in the future, though they should hopefully be done only once a quarter.

we went in for the final port flush a few weeks ago & it was rough! lewis normally would not even bat an eye during his port access from his favorite nurse, but since we had gotten out of the rhythm of getting accessed every other week it was VERY hard. lewis was screaming & resisting (wow, he is very strong!) and it was overall very upsetting for us as parents. our hearts go out to the all the kids dealing with port accesses & all the pokes! it is no fun. we were fortunate that lewis was so young when he got his port placed (10 months) because he got used to it very quick & would eat a bar & not even flinch while getting accessed. everyone would be amazed at how easy accessing his port was! having an easy port access made clinic visits a breeze, it would have been so much harder if he had been resisting & fighting that port access each time (like we know so many kids do, & of course they resist it because who wants to get poked!). all to say, lewis had always loved clinic so much & visits were honestly so fun for him when he was going regularly (the nurses LOVED on him hard & made sure he always had a blast!).

the port added all sorts of other worries to our day-to-day too, as there’s a strict rule that if you had a fever you had to be sent straight to the ER to prevent infections. that happened to us a couple of times (including once on vacation…) , and it’s just no fun, so, while we LOVE our nurses & miss seeing them so often & all the support they gave us, it will be so nice to close this chapter and say goodbye to the port for good.

port removal surgery will be sometime this thursday, october 19. please join us in praying for surgery to go smoothly with no complications, no problems with anesthesia, smooth wake-up, easy recovery, & for none of us to get sick before thursday. we are getting a doctor who is newer to the hospital, so we are a little worried about that. but we are eager for god to cast away our fears & wrap this last surgery up so cleanly with a beautiful bowtie. may this be the last surgery lewis has to ever get related to his brain tumor!

otherwise, we are doing great! lewis started preschool this month & is loving it. emmett is already 10 weeks old & is our strong, happy boy. luke is back at work & rachel is getting used to everyone’s new routine.

thank you for your continued prayers! we are so grateful.

clear scans!

Hey everyone,

Thank you so much for praying with us around Lewis’ MRI. We went in on Tuesday, and it was the first he’s gotten since his surgery. It’s only been two & a half months, so no one was expecting any regrowth — at least none that would be an urgent concern — but it was still nerve-wracking. The results of the surgery had been so ideal that it felt too good to be true, and we were already preparing ourselves for what it could be bad news, like microscopic tumor that had been left behind.

But thank God, the scans were clear! No sign of the tumor. There are areas we’ll be continuing to keep our eye on, but our doctors have all been happy with what they’re seeing. We’ll get more analysis of the images with other doctors next week, but it certainly all looks like good news right now. What a relief! Lewis spent most of the appointment hanging out with all the clinic nurses who shower him in attention and fun. They’ve somehow made going to the hospital something he looks forward to.

The MRI itself was a bit hard on Lewis, as he hasn’t had to access his port now in quite some time. The first attempt didn’t go in, and clearly caused him a lot of pain. But he was so brave and faced the second attempt head-on. It was still painful, but the port flushed, and we were on our way. It ended up being one of our first outings as a family of four (we ended up bringing Emmett along!), and even though that’s not what anyone would want it to be, we continue to believe that it’s important for us to stick together.

The option of taking out Lewis’ port was brought up, and this is something that would be reasonable for us to move towards now. Please pray for us as we try to figure that out! It’s a mix of claiming the victory now & saying that we don’t need the port, but also being cautious & taking advantage of what the port offers.

While in the hospital, we visited a friend whose son has very recently been diagnosed with a rare cancer in his leg & is in the same clinic as Lewis, but getting chemo. It’ll never not be heartbreaking to have to see someone else start a journey like this of any kind with their kid. Please be praying for the Wilkinsons & brave Benjamin!

September is Childhood Cancer Awareness Month and we will be participating in the Sam Day 5k on September 16, 2023. The Sam Day Foundation focuses on furthering childhood cancer research. We had the privilege of knowing + loving Sam, and his mom Lorna has been a big support for us as we have dealt with Lewis’ brain tumor. Come run with us!

Thank you again for keeping Lewis in your prayers. We’re so grateful for his miraculous healing!

chance to catch up

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!

we're home!

this is coming a few days late, but we just wanted to update everyone: we’re home!

after we were discharged, we moved back into the ronald mcdonald house and got to spend the weekend in santa cruz, which was a lot of fun. our post-op on Tuesday went well and cleared us to come home, so we flew back on wednesday and finally got to sleep in our own bed again that night. it was glorious!

we’ve spent the last few days settling back in at home and trying to sit in the good news and just celebrate everything that happened over the past two weeks. we’re definitely still processing everything — sometimes it just feels too good to be true! but we’re mostly just so glad to be home. lewis more than any of us!

he’s definitely still adjusting, and certain elements like sleep have been harder to get back on schedule. but we’ve been figuring out his diabetes insipidus, and overall, he’s doing amazingly well. we feel like every day he gets closer to to being right where he was when we left!

so thank you for everything. we felt so covered in prayer and protection while we were there. there’s the big miracle with getting the whole tumor out, of course, but also a million other answered prayers and reminders of God’s presence with us. it was real, you guys, it really was.

so thank you for coming around us and surrounding us in love and support, and for all the meals and blessings and texts and emails!

and thank you for continuing to pray for lewis. please pray that he would continue to recover well, hit new strides physically, and regains all of his vision that was lost. and hey, while we’re being bold, why not pray for his panhypopituitarism to be wiped away too? nothing is too big for God. and thank you for those of you who have had faith from the beginning that God was going to heal lewis. we’ve been leaning on all of you all these months!

we have a number of appointments over the next couple weeks, but we won’t have another MRI for a couple of months. we’re praying the MRI is just more confirmation that lewis’ tumor has been removed and is never coming back (and we’ll have met lewis’ baby brother by then!).

we’ll make sure to post an update before then so we can all pray together, but for now, we just want to celebrate with you all on the good news and give thanks to God! he’s been so good to us!

we're out!

Today we were discharged! After 9 nights in the hospital, we were cleared to leave today, and it was glorious! It feels surreal to be back at the Ronald McDonald house, finally away from all the other anxious feelings that come with being in the hospital. Lewis was so happy to be away, and excited to go to “the other hotel.”

We had an amazing last day at the hospital that felt too good to be true. After finding out we would be discharged, Lewis got to go to the playroom, they happened to be having a Father’s Day lunch outside for all the families, and we got to explore all the fun stuff in the hospital that Lewis hadn’t been able to see. By the end of the week, we knew so many nurses and doctors and staff at the hospital — and everyone was so excited to see Lewis up on his feet and ready to go home.

Although there have been some really challenging aspects of Lewis’ recovery here in the hospital, many doctors have noted how well he has recovered — everything from his body regulating his sodium level well while having DI to the ommaya catheter coming out smoothly on Monday — everything has gone so smooth. Even his nose flap has healed really well. We’ve felt so covered in prayer and protected by God’s hand this whole week. And, of course, best of all, Lewis has been telling people that his “brain tumor is gone! they took it out!”

We spoke with our surgeon one last time this morning, who restated that the result of the surgery was a gross total resection, and that while regrowth is always possible, it’s less likely in Lewis’ situation. The idea that this really could be the final treatment in Lewis’ journey feels like such a miracle!

Tumor or not, he’ll still live with panhypopituitarism his whole life, a really difficult condition that will affect almost every area of his life. The tumor did most of the damage, and the surgery added the final bit. None of it is what we ever wished Lewis would have to deal with, but for now, the tumor really is all gone and Lewis can go back to being a kid again.

We have our final post-op appointment next Tuesday and are hoping to fly out on Wednesday. We can’t wait to come home, but it’ll be nice to catch our breath here a bit before trying to jump back into normal life.

We are so grateful to our great surgeons, their wonderful teams, & the caring nurses that took care of us these past 10 days! Thank you all for your prayers and support. We never would have survived this past week without you!

Day 7 update

Hey everyone!

Another update from us down at Stanford on Day 7 in the hospital. Every day, Lewis gets stronger, is eating more, and acts more like himself. He’s back to making nurses laugh with everything he says, obsessing over car stickers, and we were even able to take a wagon ride around the unit yesterday. He really wants to get out of the hospital, of course, but he’s finally getting back to his silly self again, which has been so reassuring.

We had a quick MRI today, which Lewis did great with, and tomorrow, we head back to the operating room first in the morning. It has two purposes: first, to clean out his nose and make sure the nose flap is healing properly where they did they surgery. This is the most important thing, because if there’s a leak happening, the reconstruction will have to start over and would be a major setback. Please be praying that the nose flap is healed successfully and that we won’t have to do more work there.

Secondly, the operation will involve removing the ommaya catheter from his brain, which we’ve been using to decompress the cyst for the past couple of years. Although the secondary “cyst” seems to still be decompressed (and not tumor), there’s still a chance the catheter won’t come out easily. It would be so amazing to get it removed and say goodbye to this era of Lewis’ medical journey - so please join us in praying that we’d have a safe and successful removal of the catheter!

Lastly, we’re continuing to manage Lewis’ diabetes insipidus, which has proved to be difficult. It’s the reason for his trouble sleeping these past few days and managing it involves watching his fluid intake/output carefully. Everyone reacts to the doses differently, so it’s been a lot of trial and error, which has been hard to put Lewis through. He’s doing great though, and our hope is that we can figure this all out while we’re in the hospital, so that the transition to at-home care is easier and safer. At this point, if we can get all that figured out, we’re hoping to get discharged by Tuesday or Wednesday, but we’ll have to see!

In particular, please be praying for our discussions with all our doctors and for the communication between them all - that has been a point of difficulty these past few days because of how complicated DI is to manage, especially through the night.

Again, thank you for praying! His surgery will likely be around 8 or 8:30, and is scheduled to last for a few hours.

But more than anything, we’ve been so thankful today for all the progress that’s been made. God’s been with us every step of the way, and even in the minor setbacks that happen, we’re trying to stay focused on the Lord’s faithfulness toward us. We have so much to celebrate and be thankful for!

recovery update

Hey everyone — just wanted to give a quick update for Lewis’ recovery. We’re so, so thankful for how well the surgery itself seems to have gone. We finally got a chance to look at the post-op scans yesterday, and it was just so amazing to see that big tumor completely gone. We asked our doctor to repeat the words “went perfectly” and “better than expected” when we saw him again. It still all seems too good to be true.

To be clear, there will always be a chance of recurrence — even in this case, which is considered a gross total resection (which feels amazing to say!). But we know that just a few undetectable tumor cells left behind can result in regrowth, which means that we will watch closely over the coming months and years to make sure it doesn’t come back. Our prayer is obviously that this will be the last treatment Lewis will ever need!

We haven’t had much time to sit in the good news because recovery has been really challenging. Lewis spent the following 24 hours after surgery in what we think was a sedation/opioid delirium in the ICU, which was horrible. It ended on Wednesday with us getting a quick MRI and putting him back under anesthesia, which seemed to reset things - but putting him back under anesthesia without an anesthesiologist was also terrifying. Once we got him off some of the harder medications, he slowly came back to us, but he’s still had trouble sleeping and eating.

Now, we’re also dealing with his diabetes insipidus, which was a result of cutting off the pituitary during the surgery. He still hasn’t gotten the sleep or food he really needs, and we’re now having to carefully manage his fluid intakes. It’s been really hard, especially knowing he’s been through so much and just wants to get out of the hospital. Our prayer request is that we’d be able to figure out the correct dose of medication to deal with his DI without too much more struggle for Lewis. He’s a champ, but it’s been really hard on him & he is sick of being in the hospital.

The doctors tells us that he’s otherwise been healing really well. They all seem rather impressed by just how well he’s doing. The concern about a brain fluid leak through his nose was always a big risk, but so far, things appear to be healing really well. We’ll know for sure about that by this weekend. It’s amazing to see him bounce back somewhat quickly once we got over the delirium, especially since there’s very little evidence on his face or head that he just had brain surgery! It’s amazing. He is still his funny little self & it was the best thing to see his personality in little bits when we got back to him post-surgery.

As of now, it looks like we could get discharged from the ICU by possibly Sunday, but there’s a chance we may be looking at one more small procedure while we’re here. The day is to be determined, but we will likely be removing his ommaya catheter (yay!) and doing a final cleaning of his nasal passage to ensure it’s all healing correctly. We’ll post another update for when this is happening, but if you would, please be praying for another successful operation. Taking out his ommaya should be relatively easy procedure, but there’s risk of blood loss &/or the catheter being stuck, in which case we’d have to leave it in. We’d love to be able to take it out for good! We’re also a little worried about being admitted again after just getting discharged, so we’ll see how that goes!

So prayer requests for right now in the hospital:

• figuring out the correct medication dose for his DI

• coordinating surgery date for ommaya catheter removal

• ommaya catheter can be removed easily & hospital recovery would go well

• Lewis would stay in good spirits & move toward his normal sleeping/eating schedule

The past few days have a blur, but we feel like we’ve been held up by God through all your prayers and support. Thank you so much for all the encouragement and meals and texts. It’s keeping us going! It feels like we’re almost on the other side of the most difficult stuff, even if it still feels hard today.

surgery complete!

surgery is finished - yay! we met with our amazing neurosurgeons around 6:15pm, and they met us with good news - after a 10 hour surgery, it was a success, YAY. we are overwhelmed & speechless, we heard the words “went perfectly” and “better than expected” and the rest is a blur.

praise god!!! thank you for covering us with your prayers & love. we felt it all today. lewis is currently getting an mri and he will move into the pediatric icu. we can’t wait to see him! when he wakes up, it will be our turn to take care of him & comfort him so we are gearing up for that.

we had a great nurse who prepped us for surgery. she was praying for lewis & was just so amazing, what a blessing.

as for the results of the surgery, more details to come, but we wanted to share what we know right now, which is that things went really well. so many answered prayers and all glory to god, we are so thankful! thank you for your ceaseless prayers & carrying us with your faith + belief. thank you, god!

Lewis watching and singing along with church before surgery :)

first update from stanford

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

prayer meeting

hi everyone!

we are overwhelmed & so so grateful for all of the support & generosity we have been shown this past week. thank you so much. we feel very blessed by each of you, & having so much support means so much to us, it’s hard to explain, but it makes us feel like we can get through this okay, like we’ll be alright. we are grateful.

we will have a prayer meeting for Lewis at Bridgetown Church this upcoming Sunday, May 28th after the 11am gathering, around 1pm. we will meet in the chapel (next to the sanctuary), share an update, sing some of Lewis’ favorite hymns, & lean into the Holy Spirit for some healing for our sweet boy + the surgery ahead. we would love if you could join us in person! or just by praying during that hour with us from wherever you are. see you then!

bridgetown church
2120 ne tillamook street, portland

it's all happening

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!

snezhana’s photography