Easton Strong

Easton Strong Easton and Kori’s journey with HLH (hemophagocytic lymphohistiocytosis) and through bone marrow transplant

08/08/2025

💙 September is Histiocytosis Awareness Month 💙

In honor of Histiocytosis Awareness Month coming up in September, the HLH Heroes Foundation is offering FREE blue awareness ribbon yard signs to families and individuals impacted by the rare disease HLH (Hemophagocytic Lymphohistiocytosis).

These yard signs are a symbol of strength, hope, and unity for the HLH community. Whether you're a family currently affected or an advocate spreading awareness, we want to help you show your support for the HLH and Histiocytosis community.

🔹 Request your FREE yard sign here (can only ship to US address). Donations appreciated to help cover costs, but not required. https://forms.gle/QEGUEZNKDpjTke8L6

Additionally, if you're able to support to help cover the cost of the yard signs and other initiatives, or just want to donate check out this link! Every donation helps make a difference!

🔹 Donate here: https://secure.givelively.org/donate/hlh-heroes-foundation-not-for-profit/hlh-heroes-september-awareness-2025

Together, we can spread awareness, support those impacted by HLH, and spread hope. 💙

Today we celebrated Kori’s 1st birthday party! Although her immune system is basically up to par, we kept her party to p...
08/03/2025

Today we celebrated Kori’s 1st birthday party! Although her immune system is basically up to par, we kept her party to pretty much family only (or people closest to us who are like family). It was a great time to celebrate a special milestone!🩷

Kori is 6 months post transplant and thriving! She is all caught up developmentally to other babies her age. Our doctor here in Pgh gave us the clear to minimize most restrictions & even to fly for travel (although we don’t plan to fly until Nov). Her only lingering restrictions are 1) to be careful in the sun, as well as 2) no super crowded areas especially indoors. Thank you to everyone who has shown our family so much support over the years.🥰

Our sweet girl is 1 year old today!🩷She is the sweeetest, sassiest, most fierce baby girl ever. Her first year was more ...
08/02/2025

Our sweet girl is 1 year old today!🩷

She is the sweeetest, sassiest, most fierce baby girl ever. Her first year was more challenging than most so we are looking even more forward to this next year. We love you to the moon baby girl! Cant wait to celebrate you today & tomorrow🎉

Day +178❤️ We got home from Cincinnati late Tuesday night after she received her boost! We had received her lab results ...
07/25/2025

Day +178❤️

We got home from Cincinnati late Tuesday night after she received her boost! We had received her lab results and her recovery has continued to trend in the right direction. Before her boost, they drew a chimerism lab (anticipating it go down further hence why they were giving the boost anyways). PRAISE JESUS! Every cell line dramatically increased on its own. This was all prior to the boost. We are assuming the boost will just further stabilize it. This was fantastic news for us.

While we were in Cincinnati, staying at the Ronald McDonald House Charities of Greater Cincinnati . We were beyond honored to have been asked to speak at their annual RMH GALA, a formal event with the many sponsors and donors who make the house possible. We can’t wait to attend the event and shed light on the impact that the house has had on our journey as well as life after the medical. ❤️

day +168💦Kori is just about 6 months post transplant! We are in Cincinnati all this week & half of next week. Kori will ...
07/16/2025

day +168💦
Kori is just about 6 months post transplant! We are in Cincinnati all this week & half of next week. Kori will receive a CD34 boost (just like Easton). Her chimerism (donor cell %) seems to be trending just like his was at this point. The team feels it makes the most sense to boost her now to push her cells to stabilize sooner than later! In the meantime, Eric has to prep his body to draw the massive amount of cells by receiving shots of GCSF once daily for 5 days (starting Thursday). Yesterday, Eric got labs drawn & had his consent signing. Today, Kori had her appt w her doctor for her consent signing along with her 6 month follow up! We now have nothing until Thursday. While waiting on a room to open up at the Ronald, we decided to take a detour to Kalahari Waterpark to try to make this feel as much like a vacation as possible for Easton. It was a perfect time being a Tuesday, it’s much less crowded than on a weekend! Although Kori’s immune system is pretty close to being up to par, we opted to keep her out of the public pool. Kori did what Kori does best….EAT! We can’t wait to fill the rest of the week with different activities & visit our favorite places. Kori and Easton have been THRIVING since being home. Easton starts preschool in less than 2 months, then shortly after we go to Disney for his Make a Wish. We have so much to look forward to the rest of this year. Thank you Jesus for a life full of memories with my babies, and may we never take their health for granted. 🩷

✨Kori’s post transplant life photo dump✨Kori just hit 4 months post transplant a couple of days ago! We are just taking ...
05/31/2025

✨Kori’s post transplant life photo dump✨

Kori just hit 4 months post transplant a couple of days ago! We are just taking in being home and enjoying every moment. We have so many things to look forward in the next coming months/year. It’s been much needed seeing all of our friends and family that we’ve been away from over the last 6 months. I’ve loved being able to see Kori’s personality explode while being home. We don’t realize how much the medical environment hinders them until we get away from it. Kori’s transplant was certainly the most trying time of our life between navigating the medical and also trying to keep Easton (and ourselves) mentally sane, but God continues to pull us through every time. I am so thankful to everyone who has been so supportive of our family over both Easton & Kori’s transplants. I will continue to post more spaced out/long term updates (God willing that there is nothing more needing updated medically!!) of all the progress both kiddos have been making. It’s so crazy to look back and especially see how far Easton has come since starting this page. Thank you everyone that’s been following along my babies’ journey❤️

Day +98🏡Yesterday was our last appointment with our Cincinnati team until her 6 month BMT appt. in late July. We have ou...
05/06/2025

Day +98🏡
Yesterday was our last appointment with our Cincinnati team until her 6 month BMT appt. in late July. We have our first follow up with Pittsburgh on Thursday! We got home last night and are unpacking/re adjusting to normal life. We could not be any happier to be home. 🩷

05/05/2025

Just Kori, smiling and doing great on her road to recovery from her life-saving bone marrow transplant.

Thank you to Flashes of Hope for the beautiful pictures of our family❤️
04/29/2025

Thank you to Flashes of Hope for the beautiful pictures of our family❤️

Day +91❤️Kori is doing great! We come home in just 6 days…less than a week!! We have a busy week this week being the las...
04/29/2025

Day +91❤️
Kori is doing great! We come home in just 6 days…less than a week!! We have a busy week this week being the last before we come home. Yesterday we had clinic & saw our doctor. Today we have her echo and last PT/OT session. Tomorrow she gets her central line out. Thursday we have a weight check. We’ll be getting lots of packing done over the weekend. Lastly, we’ll wrap it up with a final clinic visit on Monday before heading home Monday afternoon!

Transplant wise, she continues to do well! The only thing that we are currently dealing with is she has what we THINK is a slight antibody in the background that is destroying hemoglobin. She’s getting blood transfusions about once a month. Our team says this will either resolve itself over time and once we wean off cyclosporine (immune suppressant) or will worsen and in which case is also very treatable. Once it’s resolved, it’s resolved. They said all cases, even the worst cases are manageable. Kori’s chimerism also started to drop slightly which we experienced with Easton! Our doctor had a very medical (one far beyond my understanding) explanation for this and is not at all concerned. We are extremely ready to be home. Please continue to pray that both Kori hemoglobin stabilizes as well as her chimerism!❤️

day +80🥰Kori is chugging away at her 100 days! Kori has been only getting nutrition by mouth for a couple weeks now…NO N...
04/18/2025

day +80🥰
Kori is chugging away at her 100 days! Kori has been only getting nutrition by mouth for a couple weeks now…NO NG TUBE! As of now, we are scheduled to get her central line out on Apr.30th, which we are thrilled about. We are counting down the days to come home. If all continues to go as expected with no issues, we will come home with two happy & healthy babies on May 5…just a little over 2 weeks! From there we will be seen at Pittsburgh Childrens regularly, but not nearly as regularly as we’ve been seen since discharge here. Depending on our cincinnati doctor’s recommendation, we will follow up in pgh probably 1-2x a month then come back to cincy in July for a follow up. We are so excited to see what the future holds for our family as we continue on the recovery journey. Please continue to pray for Kori especially over the next 2 weeks that she continues to progress and that we may have a smooth transition back home. 🩷

Day +69 😎 We come home in just 4 weeks! This will be a few days before day +100 if all continues to go well, so we will ...
04/07/2025

Day +69 😎
We come home in just 4 weeks! This will be a few days before day +100 if all continues to go well, so we will be home for Mother’s Day. Also, I’m sure you noticed…Kori is TUBE FREE! Now you can see all of her face🩷 She has been a rockstar with her eating. We are also planning on getting her line out before coming home. She has thus far done tremendous with transplant…PRAISE JESUS! We could not be more thankful to her team here in Cincinnati.

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