Oakley_Twins_Journey

Oakley_Twins_Journey Eve and Ella's page to share updates on their ongoing Retinoblastoma treatment. Eve’s abdominal recovery is still ongoing, with slow improvements each day.
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On January 1, 2018, Eve Oakley, beloved infant daughter of Nathan and Maryann Oakley, was admitted to Penn State Children’s Hospital (PSCH) Pediatric Intensive Care Unit with symptoms of lethargy and inability to eat. After her vitals were stable, she underwent exploratory abdominal surgery where a volvulus was found (a condition where a portion of intestine or bowel is twisted around itself, caus

ing an obstruction). Once found, a portion of her small intestine was removed, with the remaining portions brought to the skin for colostomy and recovery. Eve also developed septic shock soon after as a result of the intense abdominal surgery, and remained in critical condition with life support for about 10 days. During this time, she was extremely puffy and swollen, with low organ function requiring numerous intravenous medications to keep her vital signs stable. By day 11, her kidneys began to rally and turn the corner, which led to her puffiness and swelling to subside. In addition to the abdominal surgery, Eve and her twin sister Ella were both recently diagnosed with Retinoblastoma (a cancer that forms in the retina of the eye). Ella was first diagnosed on January 15, 2018 with bilateral Retinoblastoma – one small tumor was found in each of her eyes. Her diagnosis and treatment is taking place at the Children’s Hospital of Philadelphia in coordination with Wills Eye Hospital. Ella began her first of six rounds of outpatient chemotherapy on January 18. Ella is currently at home and recovering from round one of chemo and its side effects. Eve was seen by an ophthalmologist at PSCH on January 17, at which the doctors at PSCH recommended transfer to the Children’s Hospital of Philadelphia (CHOP) to continue her abdominal recovery and begin treatment for the retinoblastoma. On January 18, she was flown via medical transport to the CHOP and was admitted to the NICU for recovery and treatment. Her chemotherapy treatment will begin soon once she is recovered and healthy enough to begin treatment. She currently has a colostomy bag for her waste, and the treatment plan is to eventually undergo surgery to reattach both sections of the intestine, however, it is unknown when this can occur with the prospect of chemotherapy treatment. On January 23, her breathing tube was removed and she is breathing 100% on her own. Her treatment and recovery will be continuing for quite some time. As you can imagine, this has been quite a shock for the twin’s parents. They have had their hands full with medical tests, doctors, multiple hospitals, insurance, travel, and care logistics. On top of that, Maryann has not been able to return to work and Nathan has only returned part time (two to three days a week). Since both children are now being treated in Philadelphia, we felt we needed to start something to help alleviate any financial stress so they can focus on treatment and healing. Any money donated will be used for medical expenses not covered by insurance, as well as travel and hotel accommodations since both children are now being treated in Philadelphia. Please keep both Eve and Ella in your thoughts and prayers and thank you for your support. We will be posting updates via GoFundMe and Facebook. No one fights alone and we feel so fortunate to have so many help us as we Rally for Ella and Eve!

06/15/2026

There are so many kids in here today, with one DREAM in mind, to LIVE. It’s hard to see. My heart goes out to each and every child. 💕

We were lucky to travel to the beach for a couple of days with family.  Much needed relax time.  Of course we played at ...
06/12/2026

We were lucky to travel to the beach for a couple of days with family. Much needed relax time.

Of course we played at the arcade. And they slept with their treasures. The butter is a popular pick. lol.

Oncology appointments next week. 💕

06/05/2026

The Bowling one is in the comments. 💕💕

Working on my next set of Freebie Finds Post Now! lol! Stay Tuned!!

We are a budget family, I talk about that often. And during these times, anything is helpful. Hope this helps some of you too!

I will say, the bowling one is AMAZING!

Happy Summer! 🌞

06/02/2026

Some said they like my “squishy hunt” videos, so here ya go. ♥️♥️

I never really liked trending products. I never cared for the Labubu rage. They were too expensive and not cute. LOL.

These, on the other hand, I just like them! They don’t break the bank, cuz we do not have a bank to break. 😂😂. And I usually can never find them anyways.

Sometimes, I bring them to my therapy sessions. And my therapist even likes them!!

My favorite thus far, is the Jumbo Butter. I use it everyday for stress relief. And of course, the girls love them too.

So, if it’s not negatively impacting your life, why not just enjoy the fun. I do! 💕💕

05/27/2026

Awe, this was right before Eve received her cochlear implant. ❤️

05/19/2026
05/19/2026

Just a little sign language for today. Just a Mom learning sign language for her daughter. ♥️❤️ Trying my best.

05/18/2026

It’s not an easy decision. I guess it’s probably good to step back every now and then, for all moms. 🫶

Little Miss Eve. I think we have the helmet and cochlear implant situation stabilized.  So, it doesn’t slip off, we made...
05/16/2026

Little Miss Eve.

I think we have the helmet and cochlear implant situation stabilized. So, it doesn’t slip off, we made cosmetic adjustments to the helmet itself. But when she does put her helmet on, it still sometimes slides off. If the coaches can’t reconnect it, they call myself or my husband in. The blinking green light, means we are good to go.

We’ve had to learn and make so many adjustments on this journey. I think this was a minor one. We’ve had to learn how to change an ostomy bag, flush lines, replace a pulled feeding tube, wound care, etc. The list is a long one. But, we always learn. We’ve even taken classes at the hospital.

Right now, I’m working on finding oral rehabilitation for Miss Eve. This is more intensive than just a speech therapist. I need someone who specializes in new cochlear implants in children. Eve essentially is learning from scratch, as the brain processes this new sound. The brain needs to tell the mouth how to make sounds and words.

If any of our followers have experience on this, please let me know. You all have been so helpful when it comes to these hurdles. 💕💕💕. Thank You!!

05/11/2026

I had shared this to my story a week or two ago, and y’all had so many questions and asked where I got mine. 😄. I love making these little videos, keeps me busy.

I had been thinking about getting one of these for a while. But, all I could remember was that Snoopy Snow Cone Maker. I actually hated that thing when I was a kid, it took forever to grind one cube. LOL.

This one only takes 2-3 cubes and it’s ready in less than a minute. This will come in very handy over the summer, especially when the girls friends are over.

It is on sale right now, for under $20. Pretty good deal, and we love ours!!

The 🔗 is in the comments. Hope this helps!!

Happy Almost Summer 🌞

Address

P. O. Box 177
Marysville, PA
17053

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