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Jemma’s Journey, Sublette, KS (2026)

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. 🙈🤣

06/09/2026

Well, that was fun! Yesterday was epic in the best way possible. We loved delivering joy to our recipients and their families. As the kids drove their adaptive cars at Delivery Day, there were lots of cheers and happy tears. It made for a day we will never forget.

06/08/2026

We’re in Wichita today, Jemma just went down to have her MRI for tumor check-up. Please pray she stays cancer-free and her shunt is working the way it should! She had a pretty rough time going under with sedation this time and stopped breathing for a bit during it, but is doing okay now and in MRI now. 💛

06/05/2026

I’m a little behind on an update on Jemma for you all, but I guess better late than never.. summer break is in full swing and somehow we’ve just become more busy! I wasn’t sure that was even possible but of course all things are with Christ right? 🙈😂

May 18 Jemma had a cluster of appointments in KC. We took lovely auntie Jenny along to help out, and got in late on Sunday evening. After what felt like much too short night, we got to Jemma’s first appointment, feeding team clinic! This is a team of a Gastroenterologist, Dietitian, Psychologist, and Speech pathologist. They prescribed Jemma a new GTube button in a bigger size, we talked about Jemma’s feeding difficulties with talking a clean bite of food and her double swallow to clear foods and still minimal liquid intake. Jemma will see Brenda the speech/feeding therapist again regularly to help with these things. The Psychologist has scheduled more visits also, to help with some of Jemma’s problem behaviors and help with alternatives for Jemma’s sensory soothing with food since she is at the top of her growth curve, so the dietitian said maybe a bit less string cheese sticks, fruit snacks and Dr Pepper, Jemma’s top 3 favorites. 😉🙈

Then we grabbed a quick lunch in the car, while we drove to the CMH in Overland Park for ENT follow up after her ear tube patch surgery in February. In all the years of coming here for appointments I have not ever mixed up the locations of the clinics, but there’s a first time for everything and I only realized once we were in the elevator that we were at the clinic and not at the hospital, luckily we were early and the hospital was only 3 minutes away so we still made it! 🤪 Her ears have healed almost perfectly! Usually tubes help, but they’ve been nothing but issues for Jemma since she had them placed so it has been SO nice to finally have no drainage or pressure for her, and I believe her speech has even improved since the patches! She’s cleared to swim and do everything normally again!

Then Jemma had an appointment with epilepsy to have her VNS implant settings adjusted again. They’ve changed the frequency of the stimulation to be more often, going from every 5 minutes to every 1 minute running for a minute every time. So it’s going off every other minute but at a bit lower strength. Then adjusting the rescue magnet settings much stronger, but a slower increase speed. How the device works and can be totally customized to her is really interesting and I love learning about it. This adjustment has improved her epilepsy overall so far, less seizures in total, and better response to the magnet when we swipe it. If I can catch the seizure onset and swipe jt within 30 seconds, most of the time the seizure will be much less intense at the least and at best even stops the seizure. Amazing! 🙌🏻 It’s not perfect yet and she’s not totally seizure free but this is a win! The robotic vibrating voice is still pretty obvious to people but it doesn’t bother Jemma and we’ve gotten used to it.

After a long day at appointments we made the drive back home, through so much rain and hail we had to pull over and wait until I could see enough to drive again. Then I missed the exit off the interstate to Ellsworth and drove all the to Hays before we noticed. 🤪 Maps tried telling me for hours but I had silenced it so Jemma could sleep uninterrupted. I won’t be doing that anymore! Jemma is great traveler and was a champ the whole time! 💛

Jerry Penner
Jenny Loewen

05/01/2026

A quick update & a few thoughts! 💛

Read to the end! 😉

Jemma is still having seizures, 2-4 a week for the last 3 weeks. The good thing is the VNS is working after 2-3 swipes and she is not needing the oral rescue medicine. She has had a viral cold she just can’t kick, and we know that even a runny nose and cough for Jemma always means more seizures. We will increase the settings of her VNS in Kc later this month. I’m communicating with her neurologist but with a whole new patient portal system to navigate it’s been an adjustment to get through to them.

Jemma is doing pretty good overall given the circumstances, a few gains in verbal communication, she’s doing really good in physical therapy, she used to have low endurance with Kilah but has just blossomed with her in the last year! Now she loves to go see “Diyah!”. We tried taking her to a local OT again, but after a few visits the therapist let me know that because Jemma wasn’t able to follow her instructions or handle more than a few minutes of work with her weak hand because of the sensitivity in it, she said she didn’t think she could help Jemma anymore and that she believed Jemma needs sensory input therapy and ABA (Applied Behavioral Therapy) in order to have occupational therapy be successful. This isn’t wrong, but that sort of therapy is 4-6 hours away and only with a specific diagnosis of Autism, that Jemma does not have yet. She said we should move.🤪 In my opinion, it takes a specific type of person to be able to work with kids like Jemma, and she just doesn’t have it. Jemma CAN do OT with someone that’s patient and kind and meets her where she is. So I’ve taken that on and working with her at home for now, until we find someone else.

In terms of behavior, Jemma is somewhat struggling. She has good days too, but she gets easily overwhelmed and frustrated, especially with other small kids around her age. She will impulsively hurt others and it’s exhausting for her and us. We know she’s spent the majority of her life with adults, her parents, therapists, nurses, all people that are there to help her and are aware of her differences and where she needs extra help. She’s not really been able to have free play with kids for almost her whole life and it’s new to her. I know there is some frustration that she knows she can’t do things the way others can, but really.. we can’t figure out what her triggers are, so I’ve submitted the evaluation forms to the developmental & behavioral clinic at Children’s Mercy. The waitlist is 6-8 months just for an evaluation. I’ve called around other places in the state and they’re all the same wait times.

Jemma went to her first preschool round-up day at school! She did pretty good at the beginning, sat on my lap and listened to a story and did pretty good with the other kids at first. She roamed the classroom to make sure it was up to her inspection, and it was full of fun things she loves. She did some dancing with the group, but I could tell she was starting to wear out and getting too close for comfort for the other kids. I had to intervene with every interaction to prevent her from pushing or pulling on the others. I had already delayed her morning meds to give her a chance to be out of the fog for the morning, but she was still getting drowsy, aggressive and impulsive, I tried all I could to keep her calm beforehand and during, so when it came time for recess we were both ready to go outside. When we came out Jemma ran around a bit and she saw the others on tricycles and I could tell this would frustrate her and it did. She loves to ride in the bike trailer at home and has shown interest in her siblings bikes too, but because of her cerebral palsy, she doesn’t have the balance, coordination, or any control of her left hand to be able to ride at all safely.

So I looked for the one thing she loves that I know she can do, the swing. The only equipment they have for disabled students, that Jemma can safely access and loves, was not available, it had blown up in the wind and was wrapped around the frame, out of anyone’s reach to get down.. and I just lost it. The one thing I was looking forward to giving her a chance to join the play independently, the sensory relief I knew it would give her right when she really needed it, and it was not available. I couldn’t hold back the flood of tears.

Grief has worked funny this way through the years since her diagnosis. I can stay focused on giving her the best care and support I know how, and stay as positive as possible, and then something like this happens and it just strikes without warning and my heart breaks again. I can handle the stares, other people’s discomfort and tip-toeing around her, I can handle my own disappointment in the expectations I had of this life. But when I saw this, I felt so defeated and angry for her.

But I reined it in, just enough to pivot. I decided I would figure out a way to use this feeling to fuel myself and make a way for her. We went to the next thing I knew Jemma could do with my help, the small playground slides. She made it a few rounds before she was frustrated and too tired to play anymore, we went back inside and I gave her medicine in the classroom and I took her home for a nap.

I was anxious before this day and I had prayed about it going into it, but something about being in the classroom with a group of kids Jemma’s age that are so much more socially advanced, independent and able, broke my heart for my girl. Our community is small, I recognize this. But accessibility at school is not negotiable, especially for children that have fought so hard just to be alive.

I do my best to see the bright side most of the time, but this time is just kind of all hit me at once how far behind she is, and how much I long for her life and her childhood to be full of fun and life, that she wouldn’t have to struggle so much just to get to be on the playing field with her peers the way she wants to be.

Every child deserves the joy of play.

Since then, I’ve been communicating with the school administrators and they are working on ways to get better equipment and a behavior plan in her IEP to get things on the right track for progress. I’m truly so grateful that they have been open to listen to my thoughts, and eager to learn and do things better. This is a good community, with good people. We know that we will need to help people understand how to interact with Jemma, and I will never shy away from a conversation about how to communicate and understand her, when people just ask and not assume.

If you’ve taken the time to read all of this, thank you. I appreciate it so much, I believe in being open and honest about our experience and her needs. So many of you have asked through the years how to help and I’ve sometimes not known what to say. Prayer is first always, and of the greatest blessing to us! But if you feel called to help us in this, please consider donating even a little to our school project to help with accessible equipment for Jemma and more children in our community with disabilities that deserve to play too, it would mean the world to us! I’ll post the link in the comments. We never stop feeling grateful, that we got to keep her, that we get to love her and see her grow and just be a kid!🎗️🎗️🎗️🎗️💚💚💜💜💛💛

04/09/2026

Jemma’s contagious laugh is just too good not to share! 🥹✨❤️

03/13/2026

JEMMA IS FOUR! ✨💐🫶🏻🥳🎈🎉

We celebrated our special girl yesterday with all her closest family. She is so loved and we are SO blessed to have had 4 years with her. We pray to have many more years to watch her grow up and spread joy the way only she does. ✨

03/05/2026

An update on our girl!💔

Last month, after Jemma’s epilepsy appointment the day after her ear tube removal surgery we talked about her continuing focal seizures and her doctor increased the doses of 2 of her medications to match her weight gain/growth. We also discussed different treatment options and asked his opinion of possibly taking Jemma to Panama for stem cell treatments. He told us that he knows about it, but because it’s not FDA approved in the US yet, couldn’t recommend it for Jemma. He said another patient of his has done it and the family claimed it was amazing and had great results, but in his opinion he did not see benefit clinically. He is a very data oriented and evidence-driven doctor, so to him, if there is not enough data, it’s not worth it. The cost is an out of pocket 25k+ for ONE treatment of Mesenchymal cells. He compared it to physical therapy being more effective than chiropractic care. We disagree, which is okay, because we know that natural medicine and western medicine can coexist and both be beneficial. We’re still thinking and praying about this.

Fast-forward to two days ago, Monday I noticed Jemma had another seizure episode that I suspected could be epileptic spasms. I recorded it, called the epilpesy center in KC and let her team know. They called back and told me the doctor would call me. 24 hours later, he calls and I explain her symptoms to him. He tells me that it is likely another relapse. She’s on full doses of every medication and it is not working. Jemma will need to go in for a set of labs, a urinalysis, and start steroids again for 4 weeks. Today, she had 2 clusters of spasms that I caught. She’s likely having more during sleep. This means that her brain is having a disorganized pattern at baseline for a long period of time and the spasms are the evidence of this. The VNS isn’t working for this. She’s now having two seizure types happening daily. Spasms are detrimental for brain development and are technically a medical emergency, requiring treatment immediately. Jemma went untreated for 10 months last year. This time, it only took 6 months before this relapse with full medication, which has NOT happened before. This medication has always worked before. Her doctor has still not called back for more instructions. He is supposed to be one of the best epileptologists in the area. I’m angry and disappointed. Jemma is meeting criteria for Lennox-Gastaux syndrome, which is incurable and treatment-resistant. I want better for her, but feel like we are hitting a dead end everywhere. Steroids were absolutely horrible last time.. immunosuppression, rage, weight gain, extreme fussiness and gastrointestinal issues are just some of the side effects. She was hospitalized for a bowel cleanout last time during this treatment. It works, but at a cost. It’s over a month of misery for her and us. Months to recover. We’re tired. We want her healthy. Please pray for a way, a miracle, something that can work and for more time that doesn’t cause more complications. Pray that we can have peace and make the best decisions possible for her. Thank you!

02/10/2026

Ear tubes are out!! Finally! These pesky tubes have been nothing but trouble since day 1, and after the last 8 months of drainage, terrible smell and discomfort for Jemma we are glad to be rid of them. The surgeon said her tubes were both totally grown shut with granulomas and definitely needed to come out. He placed a small paper patch on the holes in her ear drum to keep bacteria out and help them heal on their own. There is 90% chance that her ears will heal now without leaving a perforation or causing any hearing loss, the hearing test they did during surgery showed that her hearing is normal! So the blockage from the granulation tissue was preventing them from a good read last time. It is possible if the ear doesn’t heal that she’ll have another surgery to fix that, but that should be rare. We pray that this will just heal and we’ll be done with ear issues from now on. Sedation went very well! She’s had no nausea this time and woke up in a good mood.

Tomorrow we see her Epilepsy specialist and will talk about what to do next, she had another seizure yesterday evening in the car. They seem to be happening more during naps and sleep, she woke up and immediately went into seizure, this is common in epilepsy because during the sleep/wake period the brain is more susceptible to misfires. I have a lot of questions for him and am anxious for this appointment and what he’ll want to do.

Thank you all for praying for Jemma! We appreciate it so much! ❤️

01/22/2026

A long over due update on our Jemma girl!

Last week Thursday, Aunt Jenny and Mama drove up to KC for a packed appointment day on Friday. Jemma had a rough night at the Ronald McDonald house this time, we only went to sleep at 10ish pm, but she woke up at 4 am to sneak into and rummage through the bathroom to throw every thing within reach into the toilet. 🙈 She fully believed it to be morning and could not understand why we didn’t also believe that. So we were out and caffeinated by 8 am. By that time and with the sedation of her meds, Jemma was snoozing away just in time for her appointment at Ability KC.

Jemma’s speech device had arrived the week before and we were excited to get to Ability to have the teach us and her how to use it, what words to add/remove and customize the voice to Jemma. She slept through the entirety of the appointment but it turned out okay as it was mostly a training for me as her parent/caretaker/therapist/assistant, lol. I learned a lot and I’m so happy and relieved to have a tool that can help her communicate to us better. It will take time and work but with speech therapy and practice I think this is a huge blessing to have.

By 10:30 we rushed back to CMH downtown for her next appointments, first was ENT. Jemma has had more drainage out of her left ear now, previously it was her right ear. Her ear tubes are growing granulomas on the tubes, trying to push them out but can’t. She has steroid/antibiotic drops for the next ten days again. We are more than ready for February 10th to get here for surgery to get these pestering tubes out!

After that, we hopped over to the neurology nurse appointment, where we waited and waited and then waited more, Jemma needed a VNS increase again. They’ve also increased medication and finally scheduled a follow up with her primary epileptologist. The hospital has lost 3 providers in the last year and are shorter staffed than before making it even more hard to communicate and advocate lately. I scheduled this appointment knowing that even if we couldn’t see the doctor to get things done, the nurse would pull us through and she totally did. I don’t love doing this, but I’ve learned sometimes you have to physically be in front of someone to get stuff done without being delayed. She listened intently, then hunted him down and called and called and changed the VNS settings for Jemma, scheduled everything that had been dropped but we needed and worked hard for over an hour for us. I wanted to hug her! Jemma has another in person visit with her primary finally, and should be getting an EEG soon after. I thanked her so much and we made it out to get lunch and make it to the Overland Park CMH clinic by 2 pm.

At the Rehab appointment Jemma received one Botox shot into the pronator teres muscle in her forearm. This is because of the way she carried her left arm and how much she turns it in, by relaxing this muscle she should be able to turn her palm up and hold things more easily. It should take effect in about a week and then last for 3-4 months. So it’s not permanent but will be a good trial period to see if she will benefit from it. She will be doing more OT twice a week for this time to hopefully have the most improvement possible!

Then we made the long haul back home completely exhausted from the lack of sleep and a car version of “cabin fever”. We all felt a little sick coming home, but we made it by 10 pm. A crazy 24 hours, but so productive and worth it!

On another note, Jemma is having more seizures again. She had one moderate seizure in November. Then one severe seizure in December where we had to give rescue medicine and even called 911 while in Colorado fo family vacation. She did not need to go into the hospital because the rescue took effect and it would have resulted in unnecessary medical trauma and testing for her and being out of state without her usual team that already knows her. But it was terrifying for everyone that hadn’t seen it before, I never wish for people to have to witness these more severe seizures, but it helps so much for people to understand her. To care more to protect her. In short, Jemma turned totally grey in the face, her lips turned blue and she was totally unresponsive. Like she just suddenly dropped dead for almost 5 whole minutes. This is the worst one we’ve seen so far. With 3 maxed meds and a VNS this shouldn’t happen. I’m anxious to see what her next EEG will show, and discuss with her doctor again in person to do something. These seizures are what make the chances of sudden epileptic death seem so much more real. Like we know it could happen but when she goes a while without one, we start to feel secure and more at peace, then in a moment it’s gone. The uncertainty is back, the terror comes back and the reality of how fragile life is at any time when we may least suspect it, is back. We’re grateful for her and for every time the seizure ends and she comes back. ❤️ We just pray it can be every time.

I will post a more mild seizure video in the comments if the post will allow it, I can’t add videos and pictures together to posts for some reason. The severe seizure I will add screenshots of into the post- the video is full of panic from everyone and too hard to watch otherwise. We are told to always record for her neurologist to review later, videos help diagnose so much.

Thank you for continuing to pray and support us, it’s been a long journey with a lot of ups and downs and may be this way for a long time. But please know we appreciate and read all your comments and thoughts and most of all your prayers. Even when we don’t know what to do, we can appeal to the God that does know, and trust that no matter what, His plans are to prosper her and give her a good future- full of hope and goodness and peace, and we’re just holding onto that. ❤️

Jemma’s Journey

06/09/2026

06/09/2026

06/08/2026

06/05/2026

05/01/2026

04/09/2026

03/13/2026

03/05/2026

02/10/2026

01/22/2026

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