Jemma’s Journey

Jemma’s Journey ✨Our one in a million living miracle!

She fought a rare childhood brain cancer choroid plexus carcinoma, that almost took her life but she WON!🎗️She now battles focal seizures, epileptic spasms, and hemiplegic cerebral palsy... this is her journey💛

09/04/2026

This is why accessibility is important!

This playground had a maze of equipment to get through in order to use the slide and there was no way for Jemma to get through herself, but she desperately wanted to slide. Her siblings would come down and she would try to climb up too with them and it hurt to see her want so badly to play and not be able to, so I picked her up so many times and climbed with her so that she could!

For as long I’m able, I will make a way for her to be included. 🫶🏻✨🥹💛

NEORGANA DAYS 3-7 I’ve had many people ask about an update on Jemma’s Muse Stem Cell treatment in Merida, with school an...
09/04/2026

NEORGANA DAYS 3-7

I’ve had many people ask about an update on Jemma’s Muse Stem Cell treatment in Merida, with school and sports starting up I’ve fallen behind in posting but finally found some time!

On Day 3, they did the IV stem cells and she received 20 million cells by IV, it was a bit of a process because Jemma’s left side is affected the most by the Cerebral Palsy and has never been able to keep an IV in that arm/hand. They wanted to try because they want the cells to work on that affected side, so even after I told them it didn’t work they had to find out themselves and we ended up on her right arm. But the process was fast and although she screamed through it, it did not take long.

She continued to Neuro Physiotherapy afterwards, and she loved Ramòn! He was definitely one of our favorites because we could see how knowledgeable he was, and he was able to get Jemma to work for a full 45 minutes, she took a few breaks in between but he really believed in her and pushed her. He was determined for her, and gave us so much advice on how to help her more at home. I love when therapists push Jemma to be her best, and he definitely did.

On Day 4, Jemma recieved 10 million more cells intranasally, and the process went well too, with crying and fits, but it’s always expected because after all the medical trauma she’s had in her life and her inability to fully understand what is going on, her fight or flight response starts and she expects the worst. Lots of cuddles and reassurance gets her back to herself after a few minutes though. She did seem more tired this day, and it was a lot of busy traveling and hard work for her. The cells also cause some fatigue as they begin to work on healing her and we think she was having some of the side effects.

Day 5, she had more Neurofeedback therapy and with some M&M bribing from the therapist and her favorite songs she was able to pay attention for a much longer period, 15 minutes was great gain compared to the 5 seconds she had on the first sessions.

We spent a lot of the evenings exploring Merida, and the city was just beautiful, so much extraordinary architecture and culture everywhere. While communication was hard and driving was less organized than the US, the people of Merida were so friendly and we felt safe the entire time. Merida is one of the safest cities in North America, and the safest in Mexico. I was nervous about this before traveling but was relieved after a few days in.

We stayed at a fabulous hotel and the service, guys.. amazing. The staff was so helpful that is almost got uncomfortable because us Americans are so used to just handling everything ourselves all the time, that when they bring your vehicle, open the doors and load your things, every single time you come and go, it feels strange. The waitstaff pulls out your chair for you, and clears tables as soon as you’re ready and not before, only bringing the check when you ask for it. We never felt rushed and I loved it, the atmosphere felt slower and like people enjoyed their life with far less stress and hustle we see in the US. I wish we could bring a little more of that relaxed vibe back home. Also, gas station attendants should be everywhere, in my opinion lol.

RESULTS! ✨

So far, we’ve seen Jemma use her left hand far more than she was able to before. She would always tuck her lefty into her side and rarely brought it out and when she did it was super uncomfortable for her and even seemed painful at times for us to touch and hold. But after a couple days we noticed her pulling up her left hand and holding it with her right without discomfort! It may seem small but just that she doesn’t seem like it hurts her anymore is a big win!

She’s also started imitating everything! She’s speaking more verbally and this was huge reason we did this treatment, for her to speak. We can tell she has so much to say and is just trapped. She comprehends far more than she’s able to speak so this stride towards more verbal communication is huge for her, she’s just continued to speak more as we’ve been home and it’s so amazing to witness. 🥹✨ She’s even using and understanding her speech device now, using it more intentionally and independently than she used to!

We’ve even seen an improvement in disruptive behaviors at home too, she seems more regulated and calm than before. She was like an energizer bunny before and not in a fun way, every table would be swiped and cleared, countless remotes in the toilet, every door has to be locked to prevent her running away, every toy was chucked down the staircase and if her siblings got too close they were victims to some serious injuries when Jemma was upset. It is still hard and she still has days like this, but since the stem cells we’ve noticed a decrease and many more better days than bad ones. This is my biggest prayer, for Jemma to be able to be social, safely. For her to be calm and learn to play with her peers and for them to be able to love her like we do. We know a sweet, funny, and playful Jemma and we want the world to see that part of her, not just the dysregulated and impulsive side of her she is in loud, public, unpredictable environments.
So that we’ve seen improvement in this is just an answered prayer and blessing.💛

We’re so excited to see how much these cells will improve her life as they continue to work for her! 🫶🏻✨💛

The Penner’s are back to school!!💛 Jackson is in 5th grade this year, how? My big boy was in preschool yesterday!? 🥹 He ...
08/25/2026

The Penner’s are back to school!!💛

Jackson is in 5th grade this year, how? My big boy was in preschool yesterday!? 🥹 He won’t say it, but he’s happy to go back and see all his friends again, & most of all get back into sports season! 🏈💙

Our beautiful Jane will be in 3rd grade, and she’ll for sure bring her spunky and fun personality to her class and I’m a little jealous they get to hear her signature hilarious statements all day now. 💕🌸

& our Jemma!!🥹✨ She’s going to preschool! We are so excited for her to learn and play with her class. She just loves her teacher “Kee-yee”. ☺️ She will just attend in the afternoons for now to work up to a full day as her medications and medical state allow, and as she shows us she’s able. We feel blessed and grateful to see this milestone come for her, so many times we wondered if she’d make it to see this day and it feels humbling to witness it today. She’s growing up and we’re so proud of her! 🎗️💛✨

Miss Jessi (mama) will also be at school as a district para and I’m so excited to be a part of the school and help in every way I can, I’m grateful for our school allowing me to be able to be close to Jemma in case of seizures or emergencies. It will be great year! 🫶🏻🤓
📚✨

Jerry Penner
Jessica Penner

08/19/2026

We were encouraged to record videos to have for us at home to help us show her how to make proper sounds. We’re working on 3 consonant sounds, M, P, and B. As well as 3 vowel sounds, O, A, and E. The way Simone puts her hands around Jemma’s face was new to me and surprising, (she used plenty of hand sanitizer in between) but Jemma’s responded so well to it and was able to understand pretty quickly! 🫶🏻 we’re excited to see what the rest of the week will do for her!

NEORGANA DAY 1 & 2 💛 We arrived in Merida Mexico on Sunday afternoon for Jemma’s stem cell therapy this week. On Monday,...
08/19/2026

NEORGANA DAY 1 & 2 💛

We arrived in Merida Mexico on Sunday afternoon for Jemma’s stem cell therapy this week. On Monday, Jemma had a red light therapy session, speech therapy and we got to meet her team of nurses, Jemma especially loved her speech therapist Simonè. We’re surprised at how hands-on therapy is here. Everyone one we’ve met is so friendly and high-energy. It’s obvious this is their passion and they work hard to help Jemma. I thought she’d become overwhelmed by some of the things being so close to her but surprisingly she wasn’t. Any time she’s become upset, the therapist would pause the session to give Jemma some vestibular input, either by literally picking up our 50 lb girl and swinging her, bringing in a trampoline for her to jump on, picking her up to help her jump like a frog. At first I wasn’t realizing what they were doing, but by the end of the second day I figured out that these people are trained in kids with sensory processing difficulties and autism and it has changed the way they work with kids during therapies. Jemma was able to work for a full 30-45 minutes without a meltdown, just because they gave her a break and a distraction with short burst of different sensory input and that was enough to “reset” and continue working! I’m going to try these things at home with her now too. I feel silly I hadn’t thought of them sooner. 💛☺️✨

On Tuesday, Jemma had more speech therapy in the morning after we had a little detour at the wrong house and met a very confused older gentleman. 🙈🤪 We found Simone eventually though and she had a shorter session because her morning meds had really affected her that day. Then she took a quick nap in the car while we drove to the next Neurofeedback appointment, there they placed a lead on her head and both ears. I told the the therapist enough with my facial expressions that Jemma would not be happy with the leads, to which she told me many, many times to “just relax mom”. 😂🤪 I thought I was pretty chill but my face always gives me away. It was a new kind of therapy I’d never seen, she put on a tv show for Jemma to watch, and as long as Jemma paid attention the screen was clear, but if she lost focus the screen would blur. You can imagine with the first session the screen was blurred most of the time, as Jemma improves her attention span, she’ll be able to watch the show. So interesting! ☺️

After these therapies we drove back to the Neorgana clinic for the nasal stem cell treatment! We signed all consents after reading and discussing them, the team of nurses wrapped Jemma into a little burrito and they administered the 5 million stem cells slowly in small intervals into each nostril until the syringe was empty. She wasn’t a big fan, but it was over in 5 minutes and she did pretty good overall! Now we just wait for the cells to start working! By the end of the day, I already started to notice Jemma repeating more words we were saying, and more clearly too. I noticed her speaking more independently, telling us more of what she wanted like “wee!” to slide at the playground! I don’t want to get ahead of myself just yet because I’m staying cautiously hopeful to see benefit but it seemed to me like it was starting to work! 🥹💛🙏🏻 The cells should begin to work right away and last for 4-6 months and continue to benefit in that time.

Right after the clinic, we drove to se Ramon for physical therapy and he was also amazing with Jemma. She worked with him the whole time while he got on the floor with her and massaged her tight left leg before starting to help her keep calm. He showed us how to help Jemma sit better, she still sits in the “hemi-scoot” position while on the floor and he said we should always correct her posture to prevent postural scoliosis, I’d never had anyone tell us that before but it made sense! He also showed us how to teach her safe falling, he gently pushed her right side in order to stimulate her left arm to come out and protect herself, he said this reflex in important for safety and we know Jemma really needs it! Another thing we’d never seen in other therapies or thought of ourselves. He was so knowledgeable in everything and had a great approach to Jemma, staying with her on the floor the entire time. She responded so quickly to the exercises and when she got irritated, he switched her to rolling backwards on a ball and giving lots of deep pressure to regulate her again. I was so impressed!

Mérida has been a whole new experience for us and without the help of Jerry’s parents, I don’t know how we’d do it. We can’t speak any Spanish and have desperately wished we could, not being able to communicate has personally enlightened me in Jemma’s struggles with communication, it is so incredibly frustrating to need something and yet not be able to communicate it. Using translating apps help but feel different and impersonal and limits speech so much, similar to how her device would be for her too. We take for granted our ability to speak and communicate all the time and this only fueled me to find more ways and work harder to help Jemma communicate what she so desperately wants to tell us. Gerhard has been such a great help to translate for us while we’re here, being trilingual is amazing skill to have and we’re so grateful for his help, and for Elena being able to help us with Jemma, and Jackson and Jane, the quality of a trip like this depends on a village to lighten the load for us and they have been so selfless in following us here and lending us their hands and their voice.🫶🏻💛🥹✨ We are so grateful for them.

We are so excited for day 3 today!

Jessica Penner
Jerry Penner
Elena Penner
Gerhard Penner

Results of Jemma’s EEG: as usual her brain pattern is very abnormal, and she is having Hysarrhythmia. According to the n...
08/12/2026

Results of Jemma’s EEG: as usual her brain pattern is very abnormal, and she is having Hysarrhythmia. According to the neurologist, this background activity could be caused by a number of things but not necessarily just from the original tumor resection since the activity is all over her brain now, it could be the chemotherapy drugs, the refractory seizures over time in conjunction with the damage from cancer. Years ago, when this was first seen, it was primarily on the one side where the scar tissue is, but now the whole brain is involved. The pattern has changed to slower spike-wave discharges. It means that Jemma is at risk for seizures of varying intensity at all times and the seizure types could change and evolve to be worse over time because the brain is irritated and disorganized at baseline. The neurologist confirmed what I have thought for a while already, that Jemma does have Lennox-Gastaut Syndrome.
However, it is in early stage and on the more mild end of the spectrum of the disease. Still, since we’ve chased this Hypsarrhythmia / Spasms so many times already with steroids and she is at full dose of the only medication that treats it, her doctor decided it was a fair idea to switch one of the other seizure medications and hope that might help ease behavioral side effects and reduce seizures and their likelihood. Long term steroid use is not an option, it’s hospitalized her before and if it hasn’t kept them at bay by now, it likely won’t at all. I struggled to hear this news today for some reason, even though I had already suspected it for a while now. Having it confirmed just felt so disheartening, we know it means she will likely deal with this for the rest of her life and we don’t want that for her. I’m still thinking and looking for anything that could possibly change this or improve it more yet somehow. God has made the impossible, possible for Jemma before and He could do it again. Please pray that changing these medications will do good, there is a chance making this change could make things worse. She has another appointment next month to discuss it more and make a plan to do it as safely as possible.

The neurologist also made two adjustments to her VNS during her stay. The device will cycle much faster now and at higher frequency, that will hopefully work to regulate her brain too, and an even stronger frequency for rescue with the magnet. He did tell us that these settings will drain the VNS battery much faster than before, giving the device only about 2-3 more years before she will need another surgery to replace it. He also increased the dosage of her oral rescue medication and provided Jemma with a bridge of it to help with travel next week, since that seems to be a trigger for her.

The GI team stopped by too after we asked for consult on her inflamed GTube button site, she suspected a yeast infection and prescribed a medicated ointment for her and it is already helping! She also gave us an extra GTube for backup, while we wait for the new size to be shipped to us.

Jemma did so good after getting out of the hospital, just 2 hours after discharge she went right back to rehab therapy at AbilityKC and worked hard again for her therapists! She was happy to get to go back and play with Kyla! Or “Tiya” as Jemma calls her. ☺️ She’s really become our friend over the past three years of treatment here and we just love her.

Tomorrow, I have the first parent coaching session with the RUBI program through Children’s Mercy where they’ll teach me ways to help Jemma with behavior management at home and school, basically ABA (applied behavioral analysis) training for parents since the system is overloaded with literally thousands kids and families like ours needing help and we’re still waiting (since April) for an evaluation date for Jemma’s autism diagnosis. Her therapists and specialty providers don’t doubt that she has a lot of characteristics of autism and most likely has it. I don’t like tacking on another diagnosis to her already long list, but if it means she gets the resources she needs and has more support to thrive and grow to the best she possibly can, then so be it.

We will also bring Jemma’s wheelchair to AbilityKC for Mr. Robert to adjust the chair to fit Jemma better for use at school. It will be the best way for her to be in a classroom, serving as a stand alone desk of sorts with an attached tray and straps with buckles to keep her safe and comfortable while shes learning to sit in one place for short times, when she gets tired and needs a break, and if she needs to go more than a couple hundred feet anywhere. On Friday, she will get the turtle brace molded to her left ankle, and measured for her AFO brace. We’re hoping she’ll learn to get used to the braces more easily this year now that she’s older and that she can realize that it is helping her to walk and stay balanced better and they are NOT mini prison shackles/torture devices like she has believed up until now. 🤪😂

A busy last week here in KC!

Thank you all so much for your prayers and support! 💛🎗️🫶🏻✨

A little interruption in Jemma’s therapy schedule this week, the team called and offered her a spot in the EMU for a 24 ...
08/10/2026

A little interruption in Jemma’s therapy schedule this week, the team called and offered her a spot in the EMU for a 24 hr EEG and we jumped at it. We got in to KC right at noon today to check in, we gave her sedative right before we walked in and they started on placing the leads. The whole hookup took about an hour and was the best one she’s had in a long time, she still cried and fought and showed us just how strong she is, but we were able to soothe her and get through it fairly quickly. The medication is very sedating but she still fought through it once the air was turned on. She’s settled and now we just wait for an event for them to capture and read.

Please help us pray that they will find exactly where the problems are and that the providers will keep an open mind to finding a better solution. We would love to try something different with medication especially, with the hope of less side effects and better seizure control, but changing medications is always a risk and the last thing we want to do is cause more seizures and harsher side effects. Pray that whatever the solution is, it will be the best possible there is.

Thank you so much for your comments, thoughts and prayers for our Jemma. She’s a real fighter, her life has been anything but easy and we’re so proud of her bravery and determination to stay so full of joy the way she is. As long as it all goes well and we can get the information we need, Jemma should be back to therapy by tomorrow at 1! This is her last week at AbilityKC, then on Sunday we fly out to Merida MX for her stem cell treatment! 💛🤩⭐️

Jerry Penner

Hello again friends! 💛 I’m finally getting around to writing an update on our Jemma girl, it’s long over due so hopefull...
07/24/2026

Hello again friends! 💛 I’m finally getting around to writing an update on our Jemma girl, it’s long over due so hopefully I can remember it all.

June was a busy month, for our annual family vacation, we flew into St Petersburg Florida and stayed at the Tradewinds resort. We loved it and the kids had so much fun, they offered so many on site activities every day and the entire resort was accessible for Jemma to get around in her chair when she was tired. Unfortunately there was a heat wave the week we were there so temps stayed around 100 degrees with high humidity, so it felt like 105-115 most days. The main concern we have about extreme temperatures like this is an increase in seizures for Jemma and overheating easily because of her CP, she did have more seizures and was struggling to cool off, so we went to the beach in the evenings instead of during the day, and kept Jemma in the shaded pools during the day, which helped. Overall we had a great trip!

However, since the increase in seizures has been consistent, her doctor did increase her spasm medication dosage again. He called while we were on vacation to explain our options, he offered to give her a long-term fourth medication that could change her care to a more palliative approach, or bring her in for an extended EEG to determine if spasms were causing seizures or vice versa and start steroids again for 4 weeks and hope it keeps seizures and spasms away for another 10 months and push to keep fighting for seizures freedom. We will always choose to fight, but it is the same runaround we’ve done for the past three years. He said he’d increase her dosage anyway based on her symptoms, and prescribed her a Vitamin B6 supplement to hopefully help with the side effects she’s already having. Then told us to wait 10 days to see if she improved. So we prayed and prayed that it would be enough, and if I am being totally honest.. I did doubt that it would work. We’ve done this for so long, epilepsy treatment and seizure control just feels like an ever-moving target that we can’t reach. BUT, since the medication adjustment she actually has had improvement! Seizures are down from 2-3 daily again, to about 1 every 2-3 days. This is great! We are scheduled to bring her in for EEG in the next couple months to get a look at what her brain is doing and decide if steroids or another medication is the route we take. I’m so hesitant to agree to either, they’re both terrible options really, with many negative side effects on both sides. Please help us pray we can make the right choice, that will be the best for her and her health overall. 💛

While we wait for the EEG and keep monitoring her for seizures, Jemma is having her annual month of intensive therapy at AbilityKC! She started on Monday July 20, and will be here until August 14! We will go home on some weekends to remember where we came from and balm our homesickness when we need it, but she is already doing AMAZING here. She’s had improvements in speech and learning more words, using her AAC device, she’s working on better balance and coordination with Physical Therapy, and today her Occupational therapist showed me videos of Jemma grasping a ball with her left hand! We’re so excited to see what this month will do for Jemma and how much she will gain. 💛 Please pray with us that this month will be full of improvements and new skills, that we can stay safe here and while we travel back and forth.

We have sent our passports off and are anxiously waiting for them to be approved and get back to us so that we can take her to Neorgana in Merida for stem cells! Right now, we are looking at dates in late August or early September if everything can line up right. The cost of treatment is about $15,000, with half of the payment due as a deposit at scheduling. This includes neuro activation therapies while we are there, the stem cell treatment itself over 3-4 days, and the hotel accommodations and shuttle. We will need to book our own flights there and back. We have saved for months in order to do this, so we are chasing hope that this will be a blessing, and change things for the better for Jemma. Nothing is really guaranteed in terms of results because stem cell treatment is still a fairly new thing, and every person responds differently, but we are optimistic that Jemma will benefit and see improvements in muscle tone, speech, behavior, seizure decrease in frequency and severity, and nervous system regulation. There is a chance it may not do everything we want it to, but every chance there is at hope for a better quality of life for her is worth it, and we’re going to take it. Every time.💛

Thank you for praying and supporting us, for staying in the loop and caring about our sweet girl. I’ve said it a lot, but I am always more aware of it when we are away from home that we really are blessed with our town where our community has stayed aware of Jemma’s life and watched her grow, I absolutely LOVE when we come home and people are kind and care so much, because they already know what Jemma’s been through, they know how much she’s struggled to get to where she is and what a miracle she is. I love that I don’t feel like I need to constantly apologize for her all the time, when she gets overwhelmed or when she’s just behaving differently than a typical kid. I’m working on not apologizing so much anymore, because she’s not being malicious, she is not a bother, she is not in the way, she has just as much right to be everywhere everyone else is, and I need to work on caring less about the opinions and funny looks from strangers that judge her because they don’t know what she’s had to fight through, and won’t see her as the blessed, wonderfully sweet, beautiful girl she is. But it is hard, so I’m grateful that being home feels like an exhale, to be around people that understand and love her. So, thank you. 💛

Stay tuned for many more pictures and updates on Jemma’s days here in KC! I plan to post much more often to keep you all updated on her progress! 💛

Jemma is still cancer-free! Her shunt is working and everything is stable! 🎉👏🏻💛She had some side effects of the medicati...
06/09/2026

Jemma is still cancer-free! Her shunt is working and everything is stable! 🎉👏🏻💛

She had some side effects of the medications, we don’t know why she becomes lace-y and blue/purple in her arms and legs with precedex but it resolved quickly. Her ASD heart defect was found years ago just because of this. But since the defect has been healed since last year we didn’t expect it to happen again, it seems to be an issue with blood perfusion specifically happening with this sedative only. We will add the medication to her adverse event list and stay away from it for good. She was a pretty wobbly and weak girl for the rest of the day and drive home, but we were able to make it the the clinic to turn on her VNS again since it had to be turned off before the scan. She did so well and was so happy to be home.💛

I’m in other fb groups with moms of kids that have had the same cancer type Jemma had, and there are kids that have relapsed 7-10 years after being cancer free. I know that it can happen at anytime, and because of the breakthrough seizures she still has and how the seizures have evolved over time makes me worry often about recurrence of tumor growth. I have peace too though, knowing that she made it through cancer once and God got us through it, and whatever happens in the future He’s with us through that too. We weren’t promised easy and although we may never understand why the sweetest, most innocent of us like Jemma have to suffer with lifelong illness and complications with health, we know that the world is broken and things aren’t fair and they’ll never be earthside. I am homesick for heaven and long for the day we can listen to Jemma tell us all her thoughts and stories and we can understand her, where she can run fast and strong, where she can have no pain, no needles and heavy medications, and she is restored and healthy. Until then we love her and cherish every day together. She’s a blessing in our life and we’ll work to change the world for her, to have the fullest life we can give her.💛

An update on the stem cell conversation we started in March. After much research and considering a lot of options, we’ve decided to take Jemma to Merida MX, to receive Dewaza MUSE stem cells at Neorgana. The treatment plan was developed in Japan and has promising benefits for Jemma. We’ve completed the consultation and the team there believes Jemma is a great candidate. They’ll do some red light therapies along with specific therapy to help the cells hone into her brain specifically. Her appointments will be in a couple months, once we get all the logistics lined up, step one: passports for the family! We plan to take the older two along as well and include them in the whole process together. We’re really excited to hopefully see improvement in speech, behavior and coordination! The treatment plan is not covered by insurance, and is pretty expensive but it is all worth it her!

I can’t believe it’s time again already, but Jemma has her AbilityKC evaluation scheduled for July 7! They are always amazing and will do great work with Jemma again this summer for a 6 week program including Speech therapy with her AAC device training, feeding therapy, verbal speech, physical therapy, fantastic occupational therapy and we’re trying to add some behavioral therapy as well. They are now mostly covered by insurance and we’re so grateful for that, so that funds can stretch to do other things for her like the stem cell treatment! ⭐️💛✨

Thank you so much to all of you that take the time to pray, comment and support us and our Jemma! Thank you for the kindness you’ve shown us and her. I always pray that through Jemma’s story people will just see Jesus and the evidence of His goodness. That people will develop more kindness and grace for all kids and people with challenges and disabilities, to value them and love them. ✨

Also..thanks for reading all these short novels I write, I promise I do try to keep it short going in, I just haven’t stopped talking since I was born. 🙈🤣

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