Overcoming with Oaklyn Faith

06/03/2026

SO MUCH BIGGER! 🙌🏻

Jeremiah 29:11: "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”

05/01/2026

Little joys 🩷

Oaks has been out of the hospital and home now for a week, she’s kicked the virus and is full-speed ahead!

Everyone comments how excited they are to see all her new hair! & we are too!!! 🙌🏻

She was having fun “booping” her cousin’s nose in the second pic tonight. Had to share them curls!! 😍

Hair Share 🎀🙌🏻

04/20/2026

7mos post BMT

Not quite how we planned to celebrate her 4th Birthday today, but we are making the best of it!!! She rolls with the punches!

Sanford Children's has done a wonderful job making it so special for her nonetheless! She woke up to her door decorated! & was just spoiled with balloons and presents! What a lucky girl!

Unfortunately we were hoping to get out of here today, but she has a stomach virus that has been going around our house. Unfortunately her body just can’t fight it the same. We came in early early morning yesterday for dehydration from the upset tummy. Today her kidney and liver have fallen back quite a bit so they are monitoring closely and adding electrolytes.

We are thankful to have such a fabulous care option not too far from home!

03/03/2026

Day +167

Wooohooo! We just finished our last weekly appointment! We now get to graduate to every other week appointments! 🙌🏻 Freedom!! Lol

The last week has been a bit heavy. Oaks has had stomach issues for the last 10 days. Big red flag post transplant…After day 5, the Seattle team ordered tests and told us to up her steroids back up three levels. I ignored this as we have been fighting so hard for so long (over 3 months) to get her off these dang steroids I didn’t want to rush and get her jumped back up. I was hoping it was a stomach bug, but they feared it was Gut GVHD showing itself as we’re almost off the steroids. At this point after transplant gut GVHD would likely be chronic/life-long. HOWEVER, after worrying sick the last several days (why do we worry, it’s such a waste!) last night we got the results that it is Rotovirus! Which means it is an infection! And NOT chronic/life-long GVHD! 🎉 I woke Jordan up screaming I was so excited when I ready that late last night! What a relief!!!!!!!!

At our immunology appointment last week in Omaha, the Dr. expressed concern that Oaklyn’s B cells and T cells were not coming back as fast as she has expected. (These are our virus fighters in our body-our main war fighters for illness threats.) She said she had discussed this with Dr. Petrovic from Seattle and that they are seeing in the cohort of kids that received the Emmapalunab like Oaks did for transplant for Stat One that sometimes their B cells never come back. She proceeded with it was not a big deal as she can replace them with immunoglobulins for life. However, my mom radar went a little crazy based on this convo and I’ve been worried about it. I was not aware of or had ignored this concern until mentioned in this visit. I didnt realize there was a concern with these T and B cells coming in slowly or that they were coming in slower than normal. However last night we did get a message that her labs now show the start of some immature T cells which do mean some new are being made. I discussed this with her BMT doc in SF today and she assurred me this is normal and no call for alarm due to the length of time Oaks has been on the steroids which are blocking these T cell and B cells from coming in. She did note that the pretreatment regiment could affect them not all coming back, but even so Oaks is still better off and Dr. has faith they will come in to a much greater degree once we get the steroids off. So i feel better about all of the above now! But these two things coupled with several appointments and tests made for a pretty heavy week last week!

Oaks is a bit run down right now. Sleeping a bit more from having been sick. And not quite as hyped up as she has been, but still feeling well for the most part overall!

All this worry and stress this last week I feel has just been Satan’s way of trying to take away from such an outstanding blessing. Why do I doubt God’s healing? Why do I/we worry? I can’t just trust that he truly took care of it all-as He always has. There’s always that sinful doubt that enters my mind, until I realize that again, God’s always got it under control. His miracles and gifts truly can be too good to be true. I truly feel this healing is such a testament and such a miracle for Oaklyn. If only we/I could fully understand just how amazing God and His healing power truly is. We feel so blessed that He is always looking out for our girl and has saved her from life-long troubles through His healing hand.

We are excited after a lot of appointments the last 10 days, to be doctor-appointment-free for two weeks now!!! Her next appointment won’t be until her 6month appointment on the 17th! Woohoo!!! & this is her last week of steroid weaning! Next week she will be steroid-free and weaned down to hydrocort which they will have her on for two months to let her Endocrine system catch back up. All great, exciting things! Please continue to pray that her B and T cells come in according to God’s perfect design! I trust it’s all in His hands as He shows me time and time again. 🩷

Thank you for all the continued prayers. We pray for all fighting these and all other battles that all will continue to cling to the goodness of God and have steadfast faith in our Almighty Healer. 🙏🏻

02/28/2026

Happy National Rare Disease Day
To all those battling a rare diagnosis.
Prayers for continued diagnoses and continued treatment improvements. 🙏🏻


Stat One Gain-of-function effects less than 1 in 1 Million people. There are less than 400 confirmed cases world-wide.

We praise God for our special girl and His guiadance throughout.

Romans 5:3-4: "Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope."

🌍💜 Today we stand with the 300 million people living with a rare disease. We are united with their families, friends, caregivers, advocates, and the medical professionals, researchers and organisations that working tirelessly to build a more equitable future for our community.

Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.

Thank you to everyone who’s taken part, whether you’ve lit up your home, shared your story, joined an event, or supported someone you love. By standing together we’re proving that our community is strong, united, and truly more than anyone can imagine. ✨

👉 Learn more and discover ways you can still get involved: https://go.rarediseaseday.org/NEWS

02/13/2026

Wow! We have been home a month already!!!! Home sweet home!!

Oaklyn is doing SO GOOD! She loves being home!!!! She plays & plays & plays! She has stayed completely healthy! Praise the Lord!!! 🙌🏻 Everyone at home has been doing such a great job with washing hands and changing their clothes before coming in the house!

You would never know (aside from the short hair) of all this warrior has been through these last couple of months! She has more joy and energy than anyone else I know!!! She’s always happy and always rolling a million miles an hour!

We still have her appointments 1-2x a week, but they are actively weaning her off her steroids! & she is not flaring! She’s doing great! After nearly 5 mos of steroids she should be steroid-free by the end of this month! She will switch to hydrocort for a little while to let her body/adrenal glands catch up. Yeahhoo!!!! BEST SURPRISE: She slept through the night from 8PM until 7AM for the first time in 5 mos last night!!!!! YEAHHHOOO!!!! 🤩 I still had to wake up & give her midnight meds, but hey, we will take that win!!!! 🏆

They are talking of starting to wean her Tacro immune suppression/antirejection meds in March-be finished by end of March. When finished, this will allow her a lot more freedom! She will be able to come out of isolation! Yay!! Exciting things!!!

Its been so good to be home!

A funny Oaklyn quote today: She told me “see that mom” I said, “See what?” She points and says “my bruise”. “I said “ya” she says, “that’s where they poked me cause they have to get my BRAIN.” 😂 I said “you mean your vein?” “O yeah, my vein…” lol she cracks me up!! She’s such a tough girl! She amazes everyone at the doctors with no tears or flinches even with all the pokes. She is such a warrior.
Loving life!! 🩷

Thank you everyone for all your thoughts and prayers. We will never be able to say thank you enough. For everything. The blessings have been neverending and so so wonderful. We’ve all been blessed more than we could ever deserve or imagine.

Wishing you all the same overwhelming joy and extreme energy that overflows from Oaklyn!! ☀️🩷🙌🏻 We all need us some of that!!

01/27/2026

Sharing this awesome song “Miracle Child”. I can’t stop listening to.

We feel so incredibly blessed!
Blessed to be home. Blessed Oaklyn is doing so well. Blessed for all the love and support we have received.

She is our Miracle Child.

More than 15 pneumonias over three years, pleural effusion, respiratory failure, life-flight, bronch spasms, bronchiactasis, lung tube, life support, ICU stays, Stat One Gain-of-function, poor future prognosis, autoimmunity, third degree skin burns from infection, bone marrow transplant…everything she has been through…& well today with a new immune system & restored health! God heals and God saves. He’s a miracle worker. 🙌🏻🩷

There’s no limits. He’s a miracle God! 🎵

Official music video for my song "MIRACLE CHILD” from the album COAT OF MANY COLORS out now! Stream it here: https://BrandonLake.lnk.to/CoatOfManyColorsID►Li...

01/10/2026

We made it home! 🏠

We left Seattle after appointments at 4 on Thursday and we made it back last night by 7:30! Drove straight through.
Thank you thank you to PapaJerry and Grandma Marilyn for driving us home!! Thank you also to Melinda and Camry for watching Emmy for us until we got home!

Oaklyn and Emmy have been playing nonstop this AM! She is very happy to be home!!! & Emmy said her wish came true to have us all back together!

We are excited to rest and settle-in the next couple of days 💗

We are so thankful for all of the prayers, thoughts, well wishes, and outpouring of love throughout this whole journey. Thank you all from the bottom of our hearts.

As I sit here I am enjoying a bowl of chilli brought by a friend while we were gone, looking out at the snow we got this morning. My heart is overflowing with gratitude. Thank you!!!
All praise and thanksgiving to God for His constant blessings and providing throughout our journey. We will rest in Him and His goodness as we weather this next chapter at home. 🙌🏻💗

01/06/2026

Day +110

Our final week here in Seattle!!!! YIPPEEE!!
We had our final regular appointment this morning and we have a closing conference meeting and pulmonologist appointment on Thursday and then we get to trek home! Woohoo!! 24 Hour+ drive with a two hour time change! 🤪🚙 We are excited trucker Papa Jerry and Grandma Marilyn are flying out tomorrow to drive us home! We’re hoping to truck straight through and get home late late Friday night!

I’ve been struggling this week with all the emotions! We are so so so excited to go home!!! But this change makes me so anxious also all the same!!! We have been so blessed in our time here! How lucky are we that God provided comfort in a place far from home that makes it so hard to leave! We have been in such an isolated bubble from the real world. Oaklyn still can’t go in public places, be around people unless they are healthy, has several med alarms ⏰ a day, all kinds of cleaning guidelines, and has several other restrictions. We’ve got into a good routine here and the change up is a bit scary for me! How to ensure we keep her safe and healthy at home during high viral season with new exposures and big sisters and dad bringing germs in from the outside world that she’s been so protected from. It will be new learning for us all! With lots of hand-washing and clothing changes 🦠 lol Oaklyn still has very little TCells and lymphosites so not much of an immune system yet. Less than a newborn still as newborns have inherent immunity from their moms. She does not. She also still has bronchiactasis and inflammation in her airways and lungs yet. & we are still struggling with GVHD as they try to wean her Steroids down.

I have so many questions as to all the dos and donts for her. & what changes we all need to make to limit the exposures at home coming in from big sisters too while not restricting their normal lives too much. I also have been struggling a bit with going back to “normal” without things being “normal”. I know all these restrictions are needed and necessary, but I think naturally we like to think/hope that going back home is back to our normal! However I think that is likely going to take quite a bit more time while still on the immune suppression and isolation protocol. Then I have the concerns about processing through all the emotions and changes at home. We’ve all spent a lot of time apart. Nearly 6 months 😢 what kind of emotions we will deal with being all back together again and navigating/relearning how to mesh all our schedules together. & getting back in a good groove for all of us at home! Change is always hard. Especially for us creatures of habit!
I know Oaklyn has been feeling this all too as she is so excited to go home, but she will also miss this place too. I wanted to share some transparency into all the feelings/emotions.

However I don’t want to undercut our excitement! We are also so excited to be home!! We can’t wait to get to snuggle with our whole family! Can’t wait to sleep in our own beds! & take a bath in our bath! & cook and eat the foods we usually have at home! Also excited to hopefully see some familiar faces! Even if it may be from afar or outside! Or with masks on 😝😷
We are ready to rip the bandaid off and get it over with and get home!!

The new year always brings time for extra reflection. We have been so blessed throughout this past year. Although this year has been one of the most trying, it has also been one full of tremendous blessing. How lucky are we to be able to have an opportunity to put Oaklyn’s health troubles hopefully behind her permanently! I’ve tried to focus throughout this journey as to what God has been trying to show us and teach us throughout this all. & several things come to mind. First, we can do hard things! & hard things are SO MUCH easier with the right mindset. I’ve found that starting our days with Praise (we jam to our fav Christian tunes) and devotion time in God’s word helps us have a lot better days! We try Filling our cup first with Jesus before the world starts attacking from all angles lol
I also enjoy listening to Ed Mylett (motivational speaker) & he talks of how we can make hard things easy and get good at doing hard things. Truthfully, I feel we have gotten rather good at doing hard things! Even when big battles or obstacles come, it seems to not rock the boat and our peace too much. I feel like we got really good at doing hard things after Oakie’s first year of life. I can honestly say nothing in this transplant journey, nor being away from home ever compared with the fear and obstacles of that first year. I think because we were mentally prepared for it and bc hard things get easier to handle!! Ed Mylett describes it like jumping in a pool. When ur 4ish years old and you jump in a pool the very first time it is beyond scary and really hard. Then the second time you are less scared and more prepared. And by the third and fourth time you’ve got it figured out, no problem! We can do hard things! & we can get good at managing hard things!! & another big part of that is for things we don’t feel like we can manage, letting Go and Letting God! We can’t navigate on our own, or I sure wouldn’t want to! We are meant to lean on the Ultimate Counselor and our Loving Father. In Him, we do find peace and comfort.

I think another big thing we have learned from our time here is eliminating outside distractions and focusing more on what matters. It has been so nice to not have all the busy-ness of life constantly (birthday parties, have to be here again this time, here at this time, this meeting, this appointment, this playdate, this gathering, this event, etc etc.) our lives are normally so busy and it has been such a welcomed break to leave all of that behind for the last 6-ish months. My goal is to continue to be more intentional about saying No and doing less “busy-ness”. We have found we so much more enjoy our time outdoors just walking and soaking in the beauty of nature or playing board games at home. I am praying that even in returning home I can set better boundaries of all our time to continue to focus on the beauty around us and enjoy the present rather than juggling so much chaotic busy-ness!

I am so thankful for this journey and all it has taught me. I believe it has really changed us. & I do believe that was God’s intention in it all all along. Sometimes we have to be removed from our “comfort” to get close to our ultimate Comforter and Healer. We are so thankful for all the many blessings and prayers that have been sent our way. We pray we can continue to bless others and that hopefully in sharing all of these things & emotions we can help others as well.

See you soon NE/SD! 🤩💗

12/23/2025

Day +97

We are excited for dad and Gracelyn and Emmy to come out for Christmas today!!! Wooooohoooo!!!

We are at clinic quick this AM for labs and then will be headed to get them from the airport later today!!

Oaklyn is doing GREAT! She got her central line out last week! Which has been a Huge excitement and relief! Although it does mean she gets shots twice a week now instead, but she’s a champion at this!

We are so close to day 100!!! Which is a big milestone!! On Friday Oaklyn gets all of her 100 day testing done including anesthesia for a CT with contrast, EKG, and Echo to make sure everything is in tip top shape post transplant! Her chimerism results have been looking GREAT also with 87% Emmy blood cells! And only 13% Oaklyn blood cells! Her graft-versus-host has also improved significantly and we are weaning steroids! Perhaps the small thing I was most excited about last week is her dental check up SHOWED ZERO INFLAMMATION! In her mouth! Her mouth has always been so swollen and inflamed her whole life and for her to have no inflammation is such a great sign her Stat One GOF disease is gone and behind her!!! Her CXCL9 weekly tests also have all shown NORMAL inflammation since transplant. Prior to transplant these were never in the normal range in her system on their own. These are all great signs that the transplant has been successful!

We are so incredibly grateful and full of praise that she has had this opportunity to eliminate the disease and change the course of her life! Her prior trajectory for years of medical harships, autoimmunity, organ damage, and a short life are hopefully now all behind her! A mere 2-3 years ago this option did not even exist for the few with her disease and she is only number 7 in this trial to have a successful transplant on the new protocol that boasts success! What an incredible blessing this is!!! All praise to God for His blessings and guidance!

Our days are numbered here in Seattle and we will be home in less than 3 weeks!!! WOOOHOOOOO!!!!

MERRY CHRISTMAS!!! Wishing you all a season full of joy and blessings celebrating the birth of our Savior! 🌟