Surgery update

Hello family and friends!

It's been a while since we've posted, and thank you to all of you who have continued to pray, reached out to us, & supported us in all the ways, including financially - we are so grateful! Things with Lewis have been mostly stable for the past while, which we've been thankful for.

Last week, we got some hard news about the state of Lewis' tumor. His last MRI showed what appears to be some tumor growth in a region that has many of our doctors concerned.

After speaking to our neurosurgeon at Stanford, we've decided to proceed with a surgery to safely remove as much of the tumor as possible. We're disappointed to see the new growth, and we're still processing the many things that will change post-surgery. But we do feel like this is the right decision for Lewis right now.

Scheduling the surgery is still in the works, but this will most likely be happening within the next few weeks, around the end of the month. We're planning to be down in California for a minimum of three weeks for the surgery + recovery. (We have made a little wish list of things to keep Lewis/us occupied in the hospital if you'd like to contribute - thank you!)

As of now, we have two primary prayer requests: 

First, the doctors aren't certain that the new growth is tumor growth, and there is a possibility that it could be scar tissue and/or inflammation -- not actual tumor growth. Please, please, be praying that this is just inflammation and that there's no more growth over the next few weeks! Tumor growth could mean a more difficult surgery that requires leaving behind some of the tumor, which would most likely require follow-up radiation (which is a risk at his young age). If any tumor is left behind, it will grow back - so this is a huge bummer and lessens our chance of having a surgery where we "get it all", it is hard to accept. If it's just scar tissue around the catheter, however, it might not be as big of a problem. We're taking a second scan next week to hopefully provide some more detail on the situation. This would give us our best chance at a complete resection. We are praying & asking that this would be inflammation!

Secondly, if you would, please be praying for us as we prepare. Between insurance, scheduling, flights, getting work off, and just the emotional side of preparing for this, it's a lot all at once. We need the Lord's peace, wisdom, and presence through it all. Please pray for His protection over us & especially Lewis! He is filled with the joy of the Lord, but just in the past few days he woke up screaming & said he was scared of sleeping in his room by himself, please cover him with the Lord's protection.

Oh, and we forgot to mention one thing, Rachel is pregnant!! We are very happy & Lewis is very excited to have a baby brother. Currently, Rachel is around 27 weeks and is due August 1st. Please be praying for protection & health over this pregnancy.

Thank you so much for all your prayers for all these things and your faith that the Lord will heal Lewis. We are so thankful for each of you!

P.S.: May is National Brain Tumor Awareness month! Here’s Lewis modeling his shirt at the oncology clinic. You can buy a shirt or donate to the OHSU Doernbecher brain tumor program here: https://pbtp.webstarts.com/

Some good news!

Thanks to all of you have been praying and supporting us this past month or so. It's been such a rollercoaster, as much of our journey with Lewis has been since the beginning.

But here's the good news: After getting our latest full MRI, the imaging confirmed that our current treatment plan is still actually working. The tumor is still there, but imaging showed that our drains are keeping the growth in check.

This is was a big surprise, since our imaging in December was telling us the opposite. It's such a relief and an answer to our prayers! We went from planning a surgery to trying to go back to normal life in just a single 24-hour period. And despite the ups and downs, we're just trying to claim this as a victory and be thankful to God. We don't know how much more time we will be able to put off this surgery, but for now, we're happy to take each and every month to let Lewis continue to grow and develop.

We're learning to hold things more loosely. We've been down all these roads so many times by this point, and taking it one step at a time, we're doing our best to be ready for whatever comes next, and to just trust that God is going to see us through it.

So, thank you for all your prayers. This really felt like an answer to our prayers, even as we wait for Lewis' complete healing in the future.

thursday mri

hi everyone -

hope you had a great holiday & new year! we packed in a lot of fun & we hope you did too.

during the advent season, we shared a tiny tiny bit of our journey on stage during church. it was the day before a quick MRI for Lewis, so we had a lot of people praying for him! unfortunately, the MRI was not good & suggested that our current treatment is not working anymore. :(

Lewis has not any new symptoms since then - thank goodness! but we are going in for a full sedated MRI this thursday, jan. 19th to confirm that our treatment isn’t working & are asking for more prayers & a healing miracle! if things look the same as the quick MRI in december, we will most likely be moving forward with the “Big Surgery” in the next month or so.

while we are talking to amazing doctors who would do a great job, we would prefer to not have to do any surgery at all! we check in for our MRI at 7:45am on thursday and will get a report of the results within a few hours, and will meet with doctors over the next few days. please be praying for our christmas miracle to come through & miraculous healing for Lewis!

thank you so much for your prayers! xo

david ann photography

psalm 22 & 23

hi everyone!

thank you so much to everyone who contributed to our facebook fundraiser for Starry Night by Pediatric Brain Tumor Foundation. we ended up raising $1,573 for more research against pediatric brain tumors. THANK YOU so much!!

and thank you to everyone who participated in lighting a lantern to support us & the other families fighting pediatric brain tumors! it was encouraging to see your pictures. we watched the lantern lighting ceremony while we ate burgers for lewis’ birthday, it was so cool to see other families involved in the fight & pressing on!

we have been lucky to get more involved in the cancer community this past month through pumpkin patch, farm, & race visits. we are looking forward to getting to know these amazing families.

our boy had a lot of fun celebrating his second birthday & he loves being TWO years old now! he is quite chatty & loves all sorts of vehicles. he is so fun to be around!

while it’s been a fun past month, we’ve also received some not great news. lewis had more growth hormone tests done, which came back as most likely deficient for growth hormone. he was also recently diagnosed with astigmatism in his right eye & there is a developing concern that his right eye’s vision is starting to become compromised, we are trying to get this checked out by a second party (this potential vision loss is making us very nervous!). please be praying directly against these things & that we could see healing in these areas.

on wednesday morning, we are going in for his quarterly full MRI. we are having his catheter tapped before the MRI, so we will be able to see how much of a difference drawing fluid out of this catheter is doing & hopefully get some more info on that. our biggest prayer ask right now is for the catheter to draw out as much cyst fluid as possible! so much so that it would change the shape of the cyst & decompress it a LOT, as much as it did in our 2nd surgery.

we are also asking for prayers of wisdom as we take the information we gather in the next week and talk to our doctors about what our next steps should be. we so badly want to make the best decisions for lewis’ health, and we need critical discernment as we navigate the options.

lewis loves the book FOUND, which is based off of psalm 23. we have been feeling like we are in psalm 22, but trying to hold on until we get to psalm 23. it has been a nice reminder for all of us!

every day we ask for the Lord to have mercy & bring full healing to our precious little boy. thank you for holding us & sweet lewis in your prayers!

starry night fundraiser

hi everyone!!

thank you for all of your prayers. they have been really holding us up & i know that lewis is doing so well bc he is constantly being prayed over - THANK YOU.

we can’t believe that our little guy is turning TWO next wednesday (!!), and wanted to share about a fun fundraiser that we are participating in & that we would like to invite you to join in as well!

the 2022 STARRY NIGHT FUNDRAISER by Pediatric Brain Tumor Foundation

PBTF is sending out lanterns to all of those involved in the pediatric brain tumor community. We will all light them together on September 28 (Lewis’ birthday!) to honor the more than 28,000 children fighting. We would love for you, our biggest supporters, to order a white lantern as well to participate with us!

We are also supposed to walk 51 miles for the fundraiser for the month of September, but I am not sure if we will be able to do that part haha. Sorry for the late notice on my part, be sure to sign up right away so they can send your lantern in time!

Be sure to sign up for your own white lantern to light with us! We'd also love to see pics from you lighting it, keep us posted! Sign up here: https://givp.nl/e/D2HH6iag

More info on the event & org: https://team.curethekids.org/event/2022-starry-night-main-landing-page/e317067

And our facebook fundraiser is linked here. We have raised $920 of our $1,000 goal so far! All proceeds will go to PBTF, the largest patient advocacy funder of pediatric brain tumor research.

We are also excited to participate in the Sam Day 5k Run this Sunday! Sam Day Foundation is an organization near & dear to our hearts, as we knew Sam & are close to his wonderful family (hi Lorna!). The Sam Day Foundation advances research for childhood and young adult cancers and facilitates wellness-centered support and experiences so kids with cancer can survive and live well. We love them!

September is Childhood Cancer Awareness month, so our community has been very active, so we hope you have been seeing a lot of posts/info about that! Only 4% of federally funded cancer research is spent on pediatrics, so there is a lot of work that needs to be done to change that. We hope you can get involved in some way before the end of the month, thank you!

a busy week ahead

Hello friends and family,

We continue to be thankful for all your support and prayer! It’s been over a month since we’ve last updated, and that’s largely because things with Lewis haven’t changed much since then — at least, not that we know of. Our pace of bimonthly cyst drains and successful infusions has continued for these past four months, which is so amazing to think about, especially considering how dire both of those medical interventions seemed then. Being able to consider delaying a resection this long has felt like an answer to prayer. One of our doctors told us recently that their expectations have already been surpassed for how long we’ve been able to hold off a surgery for. Also, the hives never came back - yay!

And while Lewis has been developing great, we know how big the cyst was five weeks ago (it’s very big), and any significant growth could easily push us beyond what our current treatments can deal with and force us to do something more irreversible.

So, we’re updating now because this week is a busy one, and we’re asking for prayers across the board. Tuesday is Lewis’ first quick MRI in five weeks, we are a mixed bag of both anxiety and hope. Please pray for good news — for a collapsed cyst or shrinkage if you have faith for it! But even no growth would be great news, and would let us continue our current plan for attempting to keep the size of the cyst under control.

Wednesday, we have our normal infusion, and then Thursday, Lewis has laser treatment for the scarring on his wrist, hand, and arm. This is his second laser treatment for the scars, and we’re praying that it will successfully keep away any damage to his future functionality, as well as allow his scarring to heal without further interventions. Lastly, this is our first time trying a gas mask instead of full sedation, so please pray that he handles this less-intense anesthesia well and that there aren’t any complications.

We’ve also been quiet these past weeks because July marked the one-year anniversary of Lewis’ first MRI where the tumor was discovered and he was diagnosed with a craniopharyngioma. We’ve tried to take time to process what this anniversary has meant to us. We’ve grieved what this tumor has forced us to consider, how it’s touched every aspect of our lives, and what it will continue to mean for the rest of Lewis’ life. We’ve also taken time to be thankful for how God has carried us through this past year. For all the answered prayers against all odds, for all the times it felt like God had spoken true and hopeful promises to us, for all the people that have come along side us and helped lift our burden when it has been impossible to carry on our own. We have so much to be grateful for. The greatest thing of all is just getting to see the little boy Lewis is showing himself to be. Our one prayer for Lewis before he was born was that he would be full of the joy of the Lord. Seeing that so clearly in who he is today, even with everything he has to endure, has brought us so much joy too.

But hitting this anniversary has also come with something that feels like spiritual blowback this past month or so. The pressure has felt tangible these past few weeks, and we’ve faced trouble of every variety as a family, including sudden physical ailments, a death in the family, a reoccurring mental health issue, and a lot more than we won’t get into. We don’t say this casually, but it’s been hard to know what to call any of it other than spiritual warfare. Please pray for the Lord’s protection and strength during this time. It’s easy for us to feel depleted, tired of asking for healing, feeling like a burden on others, not always knowing where to turn for support, and even slipping into believing lies that we know are not true. If you have faith for it, we would ask for the beginning of a new season of peace and health for our family — and that it would come soon!

We know so many of you are lifting us up in prayer, and we’re so thankful for all your support, your encouraging messages, and just for rooting for us. Thank you always!

full mri tmrw

hi sweet friends!

thank you for praying for us while we were in San Diego. lewis was able to get his antibiotics & his bacteria growth test came back negative - Yay! we are so glad his fever was nothing serious. we were able to enjoy the rest of our time in san diego & lewis had a great time with the cars at legoland.

things have been going well for Lewis! earlier this month, he had his sixth FULL dose of immunotherapy treatment & were able to do a successful tap (also the sixth one!). that’s all really good stuff.

yesterday, lewis had a bad breakout of hives all over his body & we haven’t been able to figure out why. it’s mostly gone away now with some benadryl, thankfully. the on-call doctor thinks it might be an allergic reaction to his medication (either the immunotherapy treatment or his weekend antibiotics), so please pray that it’s not either one of those & just something else random/small.

tomorrow (mon 7/18) , we go in for a full MRI at 8am! lewis will be sedated and we are praying for that to go well, especially the wake-up - no delirium please! we are also hoping for a smaller cyst/tumor and are eager to see god’s healing.

thanks for praying with us for our sweet, Lewis!

Update from San Diego

Hey everyone! We’re updating from San Diego on a long-planned trip to get away for a bit. Unfortunately, on our first day here, Lewis picked up a fever and a bad cough, and because of concerns around infections to his port, we had to head to the ER. We spent almost 8 hours in the ER yesterday at a hospital here, just trying to get some blood work done.

Thank God, we didn’t have to get admitted to the hospital and stay overnight, because his numbers can back looking great. It was hard being in a new hospital though, and we had some difficult attempts at accessing his port, before an oncology team here finally came and got it done.

We’re headed back in today to get another round of antibiotics, but assuming we hear good news about the blood sample they took yesterday, we should be all done with the hospital for while we’re here. If you could, please be praying that Lewis’ port hasn’t been infected. They’ll be monitoring his blood for 5 days, so we’re praying that he just caught got a cold or something. An infection would be a really serious issue for Lewis in his condition.

We could use prayers too. This was our first time traveling with Lewis that didn’t involve a surgery, so it’s been discouraging to all of us to have had to do this. As much as we want to be able to just turn off this part of our minds and have fun with Lewis for a week, it’s a reminder that his condition is always there in the background. We need God’s peace to replace our anxiety, even just to be able to enjoy our time here.

As for Lewis, his fever seems to have gotten better, but it’s been back and forth since we’ve been here. Please be praying that he recovers quickly, especially in time to go to Lego Land on Tuesday! :)

Thanks to everyone who keeps praying for us and pleading with God on our behalf.

stable

thank you for praying for lewis! we had a great week & are so thankful for you lifting him all up.

his quick mri scan on monday showed that his tumor is stable - what a relief! this scan was a month after his most recent one. his next scan will be a full mri on 7/18 at 8am. please be praying for the mass to be noticeably smaller, where the only answer is god’s healing!

he also was able to get his FIFTH full dose of medicine! YAY.

it’s such a relief to have these prayers answered, the dread that builds up the week/nights before scans/infusion days is a quiet, heavy weight. it’s been especially difficult knowing that the cyst is still very large, and we could always be just a little bit of growth away from needing another surgery. we are tired, but just so grateful for this good news for now!

if we could add to the prayer request list from a while back: that his catheter would start pulling out cyst fluid + have a noticeable effect on the size. it has been pulling out fluid tinged with blood, we don’t know why, & it also doesn’t seem to be affecting the tumor size with draws. we don’t really know anything for sure (this doesn’t seem to be a bad thing/harmful to lewis), but we are just figuring it out as we go along. we will keep you updated.

thank you!

quick mri on monday 6/20

hi friends!

we’d like to ask for your prayers in light of a quick mri that lewis will be having at 8am, monday 6/20.

while the reports from our last quick mri showed that the mass measured smaller, it is not crystal clear that the mass has actually gotten smaller (though we hope it has!). we have learned that the amount it shrunk is within the margin of error of the quick mri. the most recent measurements from the quick mri were compared to results of a full mri, so one doctor said it was like comparing apples to oranges - not the most reliable. but this next quick mri will give us a better apple to apple comparison, and we are hoping that it will be smaller by an even bigger amount!

please be praying with us for this, thank you! <3

we've got a walker!

Hi friends and family,

Thank you so much for continued prayer and support - I know it's been a while since we've updated, and a lot has happened in the past month or so!

First off, thank you so much to everyone who came out and helped us move into our new place. All the hours painting and lifting furniture have blessed us so much and made the move into our new house so much smoother than we thought it would be. THANK YOU! We are so happy to be here, and despite all the unpacking and reorganizing we still need to do, it already feels like home.

One of the reasons we haven't updated in the past month is because of how back-and-forth everything has been with Lewis. Due to changes with Lewis' cyst and the treatments we were doing, as well as receiving different opinions from doctors, it's been a bit of a roller coaster these past few weeks trying to figure out our next step. We even had surgery scheduled for May, and then we feel lucky we were able to cancel/postpone it - we have just been all over the place & it has been exhausting. Your prayers for wisdom and patience through this have been sustaining us! 

So, here's the good news: Upon repeated attempts to drain the cyst using our catheter, it finally has started working - amazing! We've finally been able to collect a bit of fluid every couple of weeks. We had an MRI in between drains to check, and we can confirm that it has actually shrunken down the cyst - just a tiny bit, but every little bit counts! What- WOW. We are SO grateful to God for this! We've had so few instances of good news in this past year, but this was a big one! 

We've also been able to successfully give Lewis a full dose of his infusion medication three times in a row, which has felt like a miracle too. In the past, his low neutrophil count had forced us to use a much smaller dose, but now we've been giving the full dose and haven't had any side effects.

So while the cyst is still quite large, we finally feel like we have reason to be hopeful that we'll be able to buy more time for Lewis to continue to grow naturally before having to do a more final surgical intervention. His vision seems to be stable, and aside from that, he hasn't had any other symptoms. In the past week, he even became a very confident walker, which has been fun! 

The last bit of good that came from this past month is that if and when we do a full resection of the tumor, we know what our plan will be in terms of what type of surgery it will be and what doctors and hospitals will be involved -- and we feel really good about it. 

But for now, we'd just ask for prayer that God's mercy would flow through the combination of catheter drains and the infusions, and that through all this, Lewis' cyst would continue to shrink. We are eager for more healing!

And one other thing that we could really use prayer for is for peace during this period. We are very thankful that we don’t have to have surgery now, but that puts us in a place (again) where any new symptom could mean bad news - cyst growth and/or the need for surgery right away. With every little thing we worry, “Is that a normal development thing, or is something off?” It’s a lot of tension to stay in. We want to enjoy this time while noticing new symptoms appropriately, and to believe that if symptoms do emerge we will be able to get surgery scheduled asap with everything taken care of (like insurance coverage) & that new symptoms will be clear and easy to recognize (& not too bad or anything permanent).

I know that was a lot, so here’s a list of things we would love prayer for:

• Praise for the teams of doctors caring for Lewis & continued good communication/relations

• Good growth & development to continue

• Drains would continue to be successful & that we would be able to drain even more

• Full dose infusions & good blood counts

• No new symptoms! Healing of his eyes & pituitary gland

• Clarity & peace for now & next steps

• We (Luke & Rachel) would be on the same page about decisions, everything, etc.

As always, your messages mean the world to us. Thank you so much for walking with us through this and keeping us in your prayers and thinking of us.  We love you all!

Love, Rachel, Luke & Lewis

some fun news + we need some help!

Hey everyone -

Just wanted to give a quick update in Lewis and ask for some help as we try to survive the craziness of these next couple of weeks!

Lewis is doing really well, but we're still very much in the same place as our last update: struggling to make some really hard decisions and weighing as many opinions from doctors as possible. We're coming to the end of that process soon, but please continue to pray for wisdom and knowledge in how we should move forward. We've been told time and time again that there are no right or wrong answers - but we desperately want what's best for Lewis. It's so hard to know what the best next step should be.

Over the past month or so, we've also been in the middle of the crazy process of buying our first home - and we finally gained possession of the house this week! We need lots of help painting, cleaning, and moving - and it's all happening between now and next Saturday, May 7th. If you could spare a couple of hours of painting during the week or to show up next Saturday for the big move, we'd be so appreciative.

We posted times that we need help on our mealtrain (link here!) (meals and supplies included of course!), you can sign up there or you can text Rachel or I individually. We'll be working on every day this week, so just let us know what works for you.

Thank you all for your support and love for our family, it continues to mean the world to us.

prayers for wisdom

hi everyone, thank you to everyone who has reached out to us and kept us in your prayers. it means so much to us knowing so many of you are with us through this.

this past week has been a hard one. the second attempted to drain of the catheter did not work again, meaning it's likely not functioning properly. we have a CT scan this wednesday to get a better view of where the catheter is, but without it being able to drain, we have no guaranteed way of keeping the growth of the cyst under control.

so this week, we have consultations scheduled with many different doctors. some will have different approaches and recommended treatments, and it will be a lot to take in. as thankful as we are that we've made it even this far without needing an invasive surgery, it feels so scary being back in this position again, just as we were last summer. none of the options are without serious risks, lifelong side effects, and months of treatment/recovery. regardless of which we choose, lewis will likely be among the youngest patients treated with this tumor.

we are asking for prayer for wisdom and clear guidance on our next move. this week we need clear and open minds as we ask questions of doctors and consider all possible treatment options and multiple doctors. our hope is that God will lead us toward the best doctor and best possible treatment plan for lewis.

it’s been difficult to remain hopeful this week, but there are stories out there of positive treatments that have given us hope, like ari’s: https://www.stanfordchildrens.org/en/service/neurosurgery/ari-ellman - this surgery is one of the options we’re considering right now, and ari was in a situation very similar to lewis just a few years ago.

thank you all so much. if you are joining us in praying for lewis this week or thinking of us, we always appreciate comments here or texts from you. it’s so encouraging to hear from people right now!

last call

hey everyone -

i think most of you will get this after our appointment tomorrow, but we just wanted to send out one last call asking for everyone to pray for lewis tomorrow! our appointment is at 9am, we will go in for an attempt at a drain + an infusion.

please be praying that this drain works!!! we NEED it to work! if it doesn’t work, we will have to make some hard decisions that we are hoping to not have to make.

if you have a church / community that you could share our request with, please do! we need all the prayers + thoughts in the world.

come, lord jesus come & heal your baby boy lewis!

it worked - a bit!

HEY -

thank you all so much for your prayers!!! they were able to pull out a tiiiiiiny bit of fluid today. what a relief that they were able to get even just that small amount! we are going to try for another drain when we go in for our infusion this next wednesday, 4/1. great!

please continue to pray over us. we should have been able to drain more, so one of the questions is if another cyst has grown with all the fluid - so, the catheter is in a decompressed cyst & a different larger cyst is what is growing. that would be bad. we will see!

in the meantime, we will be sitting with a lot of dread but will try to have fun this weekend! we are going to try to get out to see the cherry blossoms. we'll post pics here later.

thank you for praying & rooting for us! xo

attempt at a drain tomorrow

hi everyone -

we got a quick brain MRI done this past wednesday & it looks like the cyst has grown a lot in size. :( big bummer.

we are going to go into the clinic tomorrow to try to get it drained using the catheter. we have not used the catheter since it was place, the day before thanksgiving. after it was placed, they used the catheter to aspirate/drain the cyst. it worked great then! since it has been a few months since then, we are hoping that it still works! there is a little skepticism that it might not work for various reason, like the tip of the catheter being misplaced or the catheter itself getting clogged.

PLEASE be praying that the catheter works wonderfully tomorrow & that it can aspirate the cyst! we are hoping to get a few CCs out of the cyst & buy us more time to continue treatment with the infusions. it should be a quick + easy procedure if everything goes as planned.

we are going in for our appointment at 1:30pm tomorrow, friday 3/24. please be lifting us all up! please pray that it works great & that our anxieties would be calmed. rachel will have to take lewis in by herself.

these past few months where the cyst has been stable have been a real treat for us. we only go to the hospital like one-two times a week these days & Lewis’ vision has improved so much! feels like a pretty normal life for us. but bad news like this immediately brings a lot of fear & sadness back into our lives.

if the catheter doesn’t work, our options become very limited again & will most likely force us to go with a more invasive surgery. please be praying for healing for our little lewis!! his eye has also started to turn inward during the past week, which seems like a symptom of the cyst getting larger.

thank you for praying + lifting us up! we will update you if it works & probably not update it doesn’t bc we will be so sad. :) thanks for praying for little lewis! <3

happy march

hi friends!

happy march! we are so happy to say that lewis has been doing really well this past month. thank you for your prayers! we are SO grateful for them & the ways we have been seeing jesus move in our lives.

the laser treatment procedure on his wrist and arm scars went really well last month. lewis didn’t have any problems at all with the anesthesia (wohoo!). we are not sure how effective it was & are still trying to figure out if we need more treatments in the future.

lewis was able to receive an infusion last month on 2/2 & this past week on 3/2. infusions are scheduled for every two weeks, but we had to delay some due to low white blood cell count numbers & a cold we all caught. he is on the lowest dose of medication now, so we hope that adjustment will allow him to get his infusions every two weeks. 

the full MRI lewis had last month on 2/10 was pretty rough. lewis had a hard time coming out of anesthesia again. that is always hard to watch and usually affects his mood for the next day or so. we were able to get his botox injection in his eyes done while he was sedated for the MRI (yes, that ended up working out!) and the botox has helped straighten out his eyes so they aren’t crossed anymore. it’s amazing! the straightening of his eyes will most likely be a temporary thing, so we will see how long it lasts & if/when he needs another botox injection. but for now, it’s really made a huge difference in the alignment of his eyes, and we’re praying that it ends up being a permanent fix.

we saw his neuro-opthalmologist last week & she was amazed at how much lewis’ peripheral vision has improved since his last visit around christmas. sooo encouraging! especially when we know peripheral vision will be the biggest challenge due to the location of his tumor.

we also touched base with our neurosurgeon & that was also encouraging. seems like cyst is relatively stable, around 50% of the size it was on thanksgiving pre-surgery. & we still have not had to drain it! the infusions seem to be working & are keeping the cyst from growing. yes!!! we will continue to watch the craniopharyngioma & see what it does, but right now, things feel stable, and that’s been such a relief.

we are so encouraged by your prayers! i am so confident that this good news is the result of god’s goodness being poured out on us & the prayers of many. thank you for lifting our little boy up! we do not understand pray or know how it works, but we are leaning into it & the goodness of god.

20 So they brought him. When the spirit saw Jesus, it immediately threw the boy into a convulsion. He fell to the ground and rolled around, foaming at the mouth.
21 Jesus asked the boy’s father, “How long has he been like this?”
“From childhood,” he answered. 22 “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”
23 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”
24 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”

Mark 9:20-24 NIV

our next quick MRI is march 23. our next full MRI is may 10. in the meantime, we would love your prayers for all the things but specifically:

• cyst/tumor stays stable in size

• vision continues to improve & eyes stay straightened

• regular infusion appointments

• good anesthesia experience with next full MRI

lewis is doing so well otherwise! he just started standing on his own these past few days. he will be walking any day now! he is a big talker & he loves saying thank you, window, keys, & milk. he is such a fun guy & we love just hanging out with him and seeing what he’ll do next.

thank you for your prayers & please keep them coming!! we are eager for our boy to be healed. 

laser treatment

hi everyone!

hope you are all doing well. just wanted to do a quick update on lewis!

from our last MRI, it looks like the “new cyst” (not the craniopharyngioma) resolved - so it’s not there anymore. praise jesus! that is great news. lewis’ original cyst grew 1mm from the last MRI, so it seems to be pretty stable, which is such an answer to prayer. we continue to pray for it to be gone & lewis to be healed.

also, lewis was able to get his infusion last time & his numbers were the best they had been in a long time - wow! that was a nice surprise. behaviorally, lewis has been doing great at his infusion appointments - we have figured out what works best for him. he loves the staff & they love him! it’s great to see. we are going in for another infusion on wednesday, 2/2 - hopefully all goes well!

we would like to ask for prayer for tomorrow morning, monday 1/31. lewis is going to have laser treatment on his right wrist/arm where the accident was. this is to hopefully help it heal in the best way for him to grow with the scars & revise some issues. it sounds like the procedure itself will be straightforward & there is basically no recovery. we are most concerned about the anesthesia he will have to undergo. last time he had anesthesia for his port surgery, lewis developed emergent delirium when he was coming out of it & that was really hard for everyone. please pray against that & for an overall smooth procedure with no complications - thank you!

lewis is scheduled to have a full MRI early next month, & we are also looking to get botox injected into his eyes to help temporarily (or permanently!) relieve his eyes crossing. we just need to the logistics for when they have an opening to get the MRI + injection at the same time. can you pray something within the next three weeks opens up?

we are going to a little town around here for a mini staycation after his infusion wednesday. it will be nice to get out of house & get a change of scenery. we are excited to have some fun!

thank you for praying for us & lifting us up! we are grateful for your support & for how close the lord is to us. hope you have a great week!!

happy new year!

happy 2022! we hope everyone had a wonderful christmas & new year’s & holiday with loved ones.

it’s been another roller coaster of MRIs and infusions — but we do have some good news to share. lewis’ 2nd surgery (the one before thanksgiving) decompressed the cyst a lot (it was almost unrecognizable!) & today, it’s around the same size & has remained fairly stable. we got a quick MRI last week that suggests that the cyst shrunk compared to the time before! that alone is such an answer to prayer. we never could have imagined that his cyst would be this size over a month and a half away from his last surgery. praise god!

however, that last MRI on 1/5 also suggested that there could be a second cyst that has developed near the catheter. the doctors are pretty unsure of what it could be, but it’s possible that it’s something temporary (like fluid) that could go away. we are concerned that it could be an indication that something has gone wrong with the catheter, which would require another surgery to take out. we will continue to watch it. please pray that there is NO new cyst & it is nothing more than some built-up fluid!! that will easily go away & not cause any problems. & that it will be gone at our next MRI, thursday, 1/20 at 9am.

but also, we have been praying that god would drain the cyst out of the brain through the catheter & are hoping that what we are seeing is God in Action!

the second big request for prayer is around lewis’ infusions. he has had 3 infusions so far. his white blood cell count has dropped significantly each time and has prevented us from getting infusions every other week like we’d planned to. our doctor lowered the dosage last time, so please pray that this lower dose allows for his body (specifically his bone marrow) to recuperate faster so that we can continue the medication + that it would shrink/stabilize the cyst. our next infusion is scheduled for friday, 1/21!

and of course, we still pray every day that the cyst and tumor we continue to shrink and disappear entirely! we’ve been given so much hope over these past couple of months, and we are trying to cling to that as we move forward. we are stepping into our inheritance & asking for healing with the authority that god has given us as his children.

thank you for carrying this with us! in turn, you are actually carrying us. we can feel it & are so thankful. we love you all & will keep you posted! may we all have a wonderful rest of this week.

-luke + rachel

kaela mey photography

another mri tomorrow

hi everyone!!

thank you for praying for us! after our first MRI since the last surgery, we finally have some encouraging news to share: we saw the cyst & it was almost unrecognizable! :O wow. it is much smaller than it was before thanks to surgery (and is far smaller than the result of even the first surgery). it hasn’t grown much in those first two weeks post-op either. YAY! praise the lord.

as a result, lewis’ eyes have improved a lot too. his dominant eye switches between his right & left frequently enough that we don’t have to patch, and his eye shakiness is almost entirely gone. no one knew how much of his vision problems would be recoverable even with surgery, so it’s so encouraging to see how much vision he’s been able to gain back.

all this has been such a relief to us, whoohee! we are thankful that is has stabilized for even this short amount of time, we feel like we can finally take a breath - and it has helped us lean into this holiday season even more.

we still continue to ask for our christmas miracle! for full healing & complete shrinkage / disappearance of the cyst/tumor! we have a rapid MRI tomorrow morning & then lewis’ 3rd infusion on wednesday. (P.S. i learned that his medication should be called infusions, not chemo - oops!)

please be praying for us on tuesday morning for the rapid MR & wednesday morning for the infusion session. we are a little worried about lewis’ behavioral reactions after hospital visits. it really upsets him to lean backwards or not be in control of his body especially after these visits. his behavior was much more affected after our last infusion visit, even more than our last hospital stay! so please be praying that we can figure out a good way to communicate to him & that it wouldn’t be causing any behavioral/emotional damage. please reach out to me if you have any ideas of what to do! i think i am going to reach out to an occupational therapist & early intervention, and i should probably try to work in some baby massage.

thank you for supporting us through this wild ride. we are hoping that you are all having a wonderful time enjoying the holiday with family & friends! merry christmas!!!