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Jemma’s Journey, Sublette, KS (2026)

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. ❤️

12/09/2025

Jemma’s scans are cancer-FREE! She has no tumor, no hydrocephalus or shunt malfunction. 🙌🏻 All is as it should be and is her baseline. Her scan is still very abnormal compared to an uninjured brain, and looking at her results without knowing Jemma, doctors are shocked at her abilities every time. 1/3 of her brain is still missing or filled with scar tissue.
Sedation went well, she went right to sleep and woke up happy. After she had some zofran and an hour or so to wake up fully, we took a little trip to the mall and target to shop for Christmas gifts, then to a steakhouse for dinner!

This morning we had to make a stop for a neurologsit here in wichita to turn off her Vagal Nerve Stimulator before she could have her MRI, along with other precautions the hospital does with the machine in order for her to have a safe scan. So, tomorrow we will stop by again for them to turn her VNS implant back on and be programmed to her again. Then we will head home! Thank you so much for your prayers! We know God listens to us and He has fought for our girl and healed her. ❤️

Everywhere we go with Jemma, her story is somehow shared in one way or another.. When in target the woman at the checkout asked me if Jemma has special needs, at first I was a little shocked/surprised.. but I just told her Jemma’s story and explained why she looks, talks and walks differently than a typical kid. She listened and tears filled her eyes as she just looked at Jemma again with fresh eyes once she understood what an absolute MIRACLE she is. The baby that was dying, that they told us might never talk, walk, or eat on her own, can do all of that now. But even if she couldn’t, we would love her regardless and still be SO PROUD of her and all that she is. She brings so much joy to every person that crosses her path. She makes sure everyone knows they are seen by her and will hear her tell them HI! As she is growing up I know that her differences will only become more obvious, I just pray that people will not judge her by what makes her different but start a conversation and ask more about her, to try to understand and have grace for her. She is such blessing to us and to the world. I love when I get a chance to share her story and let people know what our God did and that there is no other explanation for her progress than Him. ✨🎗️💕

12/05/2025

This week on Tuesday and Wednesday Jemma had appointments in KC with ENT and Ophthalmology.

Jemma finished her 5th round of steriod+antibiotic ear drops after 14 days last week, so this week the surgeon came in to check her tubes under a microscope. She had to put on a papoose board to do this. This is similar to a mini stretcher with velcro restraints across her whole body to keep her still enough to look safely, Jemma wasn’t a fan of this at all. Without sedation there’s not a better way and it was quick, so it’s not worth the risks of sedating her again, but she was okay after a few minutes of singing songs and playing with the light spinner. The surgeon saw almost right away that her right ear tube is completely covered in granulation tissue so it would not be able to come out on its own, the way it should. Because she’s had so many infections this year, he recommended that she have them surgically removed and patched. They’re scheduling surgery for sometime in January.

Because of Etoposide, one of the Chemo drugs Jemma had to have during treatment can cause hearing loss, she has to have hearing tests periodically. So after ENT she headed to the sound booth for this and she passed well on her left ear, but the audiologist couldn’t get a good read of her right ear. This could be because of the blockage in the tube, so they’ve ordered another hearing test to be done at the same time as surgery so she only needs sedated one time. This is called an ABR (Auditory Brainstem Response) Test. This will see how the hearing nerve and brain pathway responds to sounds. The right side of her brain is also where the tumor was resected and could be causing the hearing loss, so we want to rule that out.

Then at Ophthalmology, they dilated her eyes and checked her retinas to see if the epilepsy medication she’s on has affected her vision yet. There’s a 40% chance that the medication will cause permanent peripheral vision loss. We hate this statistic but the benefit of this med outweigh this risk right now. It’s the only treatment for the Epileptic Spasms so seizure control and her brain function is more important than the potential for partial vision loss. The doctor did say that her Cortical Visual Impairment diagnosis is still the reason Jemma sometimes bumps into things on her left and needs to be reminded to be aware of her left side often. We’re just glad that her retinas are still healthy, and they’ll check again in 6 months.

Next week Monday the 8th, Jemma has her follow-up scan with Oncology. The days/weeks leading up to this scan are always full of anxiety for us. Jemma’s been cancer-free for 3 years now! We want her to stay that way. A lot of memories come back at this time as we remember what treatment was like and the fear of cancer coming back is heavy. Please help us pray that scans will go well and she will have no complications, and no cancer!🎗️

11/12/2025

Jemma has had a few sweet restful weeks at home getting back to routine again! She’s had a lot of telehealth video appointments for follow ups and that’s been much more convenient for us.

Jemma unfortunately had another breakthrough seizure on Friday last week. This one was more intense and longer than any she has ever had before at home. She stopped breathing and turned dusky and grey in her face and her lips/mouth were completely blue. Lasting 4-5 minutes. Honestly I was terrified and almost called 911. I ran her magnet over the VNS twice and it finally stopped right when I was about to call. I was warned this could happen with her epilepsy. Her neurologist said when her seizures were more medicated/“controlled” she could either have seizures that were more frequent but less intense OR they would be less frequent but much more intense. Jemma seems to be in the more intense/less frequent category. They’ve increased her meds again and are going to give us a nasal rescue medication as well as the cheek tablets we already have. He also recommended we both get CPR certified, so we will be doing that soon too.

I plan to look into some other options for seizures now too, there has to be something out there that works and works better than this. Her epilepsy is drug-resistant and now that she’s having longer seizures that are stopping her breathing it increases the chances of SUDEP (Sudden Unexpected Death in Epilepsy). So we’ve got to do more to prevent this and have less intense seizures at least, but strive for NO seizures eventually. Somehow. It feels like were going to need a miracle. God’s done it before, we pray He will do it again with this. We want to keep her, and give her the best life possible, without seizures and so many meds.

We did go up to KC for a ENT follow up on her ears and they were not able to find her tubes in her right ear because it’s covered in granulation tissue. This isn’t very common and we’re not sure why it happened, but it explains why she has drainage. So she’s on a steroid and antibiotic drop for 14 days this time. Hopefully this will reduce the inflammation and tissue so that they will be able to either see the tube or if there is a perforation under the tissue, if there is a perforation then she will need surgery to patch and repair it. She has an appointment again December 2nd to check again.

She also has more feeding/speech appointments coming up to help her learn to bite off foods better. We’re still cutting food into small pieces so that she can more easily eat but she needs to eventually learn to bite off things and chew more thoroughly. She will stuff her mouth like a chipmunk too and then struggle to chew and swallow it down without choking so we’re going to start again with feeding therapy in KC.

Thank you all for praying for Jemma! We appreciate it so much! 🫶🏻💜

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10/10/2025

It’s been a while since we posted an update on Jemma, she has had a super busy last 8 weeks! She’s been recovering amazingly!

She’s adjusting to VNS great and it’s been programmed to gradually increase every two week automatically. She has had only one breakthrough seizure in the last month, down from the at least 6-8 she was having in July. She’s responding to medications normally again too.

She finished her 6 week intensive therapy at AbilityKC last Friday. She did amazing and has had many new gains in all areas! Her therapists were incredible as always and we will miss them. The consistency of an intensive is so beneficial for Jemma, as hard as it is on us as a family to be apart and miss each other, it does so much for Jemma. She’s more comfortable with her left arm especially and will hold things for a few seconds at a time, can swipe and pick up things too! There’s still much room for strength and coordination but this is pretty big for her already!

She has another ear infection that she’s on drops for again, this is the 4th or maybe 5th problem with her ears since June. ENT has decided that if she has another infection/drainage that they may need to just surgically remove them and allow her ears to heal. I believe her ears are trying to push the tubes out but can’t because of a film that has formed around them preventing it. She has no pain with the infections but they smell rancid and drain a lot of pus and wax.

Her stomach has gone back to normal too, I knew that the steroids were affecting her in more way than what medically make sense, but it happens every time she’s on them.

The genetic testing came back from Goldiloks Clinic and showed that Jemma would tolerate a different type of steroids and a long list of other medications that she should avoid or change doses of. It’s definitely helpful information for the future. The other part of genetic tests also came back, there was nothing that showed an obvious correlation between her cancer diagnosis and epilepsy, so she’s just totally unique in her brain structure/function and there’s no genetic reason she developed cancer originally. There was however, a positive result for Marfan Syndrome, a connective tissue condition. Jemma has no symptoms of this condition and we are not concerned to test further. But it has made us aware of some hereditary conditions in my family history that now make sense! Genetics are so fascinating!

Thank you so much for continuing to pray for Jemma and our family!! 🫶🏻✨

09/11/2025

Jemma and mama are in KC again! She started therapy again at AbilityKC this week and had the VNS Implant turned on in clinic yesterday. She’s responding well to it, coughing/clearing her throat a little when it activates for 30 seconds every 5 minutes. She has a bit of a robotic voice when it is on but usually stays quiet through the sensation right now, she should adjust over two weeks and then we go back in for another adjustment and they will gradually increase the strength of stimulation over the the next 3 months or so. When she get to her therapeutic dose, we can hopefully start to lower some medications and be on top of it when she has to get off Vigabatrin in 9-12 months again. Our biggest hope is that she will be able to stay off of it and the VNS will prevent any further relapses of epileptic spasms!

She’s doing amazing at therapy! Her therapists LOVE her and do such an awesome job. She’s working on learning to use a speech communication device, verbal speech, physical therapy, and occupational therapy. She was fitted for a new AFO brace for her left food to help support her ankle and prevent the foot drop she has. She’s having improvement in her left arm as well and can even hold things for a short time now! She keeps it tucked away most of the time but when we tap her hand and remind her it’s there she’ll raise it and try!

Jemma is a stranger to no one, and makes sure nobody gets past her without a bright “Hiii!!” and a fist bump, or 3 lol. She’s a friend to everyone and I just love that about her. ✨

Thank you all for your prayers and sweet words! We read every comment and it means so much to us! ❤️ Day by day our mighty little princess will get stronger. She’s working so hard to be active and healthy!

09/09/2025

This Sunday, we attended the Braden’s Hope for Childhood Cancer KC Royals game! Jemma got to go onto the field for a cool picture, a VIP badge, a special gold KC hat, and recognition during the game for the mighty fight she and all the warriors have fought and survived! We had so much fun and felt honored to be a part of it with such an amazing advocacy & awareness program in KC! ✨🎗️

Braden's Hope For Childhood Cancer

08/21/2025

Surgery went great! 🎉

The VNS is just above her pectoral muscle and there are layers of stitches underneath her skin, the purple over the incision is a medical skin glue that will fade after a week or so. So we are on the long ride home now to rest for a couple weeks!

Thank you all so much for your prayers and kind words! 💜 Please pray for her to have an easy, uncomplicated recovery!

08/21/2025

Today is VNS implant surgery is today!!

Please pray that most importantly, this surgery will be successful in stopping her seizures. Also for a good sedation process and wake up! The surgery itself will take 2 hours, then after a two week recovery at home she will come back for her post-op check up and the neurology team will program, turn the generator on and it will start working! It will deliver a 30 second stimulus every 5 minutes.

A quick recap of her last few weeks-

Jemma had an X-ray at her last inpatient stay originally to check on her VP Shunt, that showed some mild heart enlargement, so she had an EKG and Echocardiogram done on tuesday to make sure everything was still okay. She had a mild ASD as a baby, that has since resolved on its own! Everything was normal!

Jemma finished the steroid treatment for spasms and is up to full dose of the Vigafyde medication, as well as her two other seizure medications, we’re hoping to get off at least one after the VNS is in full swing! She had a very rough couple of weeks at the end of the steroids after the bowel cleanout.. we almost brought her to the er she was so unlike herself and generally so miserable. But we waited it out and kept in contact with her doctors until she slowly recovered!

She started therapy at AbilityKC! She has the same amazing therapists she had last year and has already made great progress! Since treatment brought down the inflammation in her brain, she has become so much clearer and started saying so many more words! Even please and thank you independently! They fit her for a new AFO brace on her left foot, and are practicing stairs and better coordination with her. She’s even tolerating them wrapping her right arm in order to work and strengthen her lefty! This is a priority since she really keeps that left arm tucked away most of the time, we don’t know what sensation she has through it but know that it’s weak and uncomfortable for her to use. As soon as she’s cleared from neurosurgery, she’ll have the whole month of September to work hard at Ability!

08/02/2025

We’re on our way home, she was discharged a little after noon. She’s still working on cleaning out fully so we’ve had to stop many times to change her. She’s not feeling super great still though, she’s cramping pretty bad, and she’s got a raw diaper rash and cries because it burns so bad but it just keeps coming, so we’re ready to get home and have nice bath and get back to regular routine before we have to come back for AbilityKc therapy start on Tuesday! As long as Jemma feels up to it anyway, we’ll see how the weekend goes. Thank you so much for all your prayers and sweet comments! It helps us to feel less alone in all of this with Jemma! ❤️

Also, if you have a nurse/cna in your life, give them a hug from me. They are the real MVPs in situations like this, dealing with literal explosive human f***s all day is not for the weak.. if that isn’t *washing feet* work then I don’t know what is. 🫶🏻

Jemma’s Journey

03/05/2026

02/10/2026

01/22/2026

12/09/2025

12/05/2025

11/12/2025

10/10/2025

09/11/2025

09/09/2025

08/21/2025

08/21/2025

08/02/2025

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