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Jemma’s Journey, Sublette, KS (2025)

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. 🫶🏻

08/01/2025

She p**ped!! Finally! After what seemed like an entirely too big e***a for her tiny body, and some immense cramping and crying for so long she was able to get stool to pass. Only thing is it didn’t slow down until this evening. She had two baths today and 3 bedding changes and was still going. It. Was. Everywhere. She was really really backed up. But we’re just grateful it’s getting out!

She’s still on clears only diet, so she has apple juice and sprite as the Golytely solution runs through her Gtube. She’s finally getting some relief, but the penny has not passed yet, and towards the end of today the stool is drying up again which is weird. Hoping by morning she’s totally cleared out and we can go home and stay regular! Thank you for praying!!!

07/31/2025

We made it late last night and overnight they did a Shunt series to check on her VP shunt. Then started an IV for fluids, started continuous Miralax through her gtube, had her stop eating solid foods, and just did another e***a. She’s absolutely distraught, only minutes of relief in between. We’re waiting on her specialist to consult and get a better plan. Please pray something works! It was a pretty rough sleepless night for both Jemma and I, were exhausted.

07/30/2025

Day 7 and still no p**p! So we’re headed to KC, to Children’s Mercy for an inpatient cleanout. In the last 48 hrs she’s had two doses of stimulant laxative, 3 capfuls of miralax and two suppositories and no movement. It just does not make sense! Please pray we can figure out the reason behind this and get her some relief. Don’t let this smiley picture fool you, she refuses to walk and is crying and straining every 5 minutes. 💔🥺

07/29/2025

We took Jemma to the ER today because she hasn’t had a bowel movement again for 6 days now. She’s now in pain and strains so hard when she cramps every few minutes but can’t pass anything. She’s scream-crying to be held all the time. Her GI specialist recommended we take her in for a CT scan to look again for any obstruction, but there is none.

They did however, find that the little stinker has swallowed a penny. It is not in the way though, and should be passable they said. So they prescribed a stimulant laxative on top of the current daily miralax we’ve been giving, along with higher fiber, lots of fruit and juice, plenty of water, warm baths + massages we’ve been doing. The stool is not hard, but is large and she needs to get it out soon. If she won’t pass it after two days of this and another suppository, we are going to KC. The Er team and her pediatrician say that this is now out of their scope and don’t know how else to treat her here. We’re used to that by now, but because we already go back to KC next week to start at AbilityKc again that would mean we’d be away from home again.

Please pray that she can pass this and be comfortable and regular again, and that we can figure out what in the world caused this sudden issue, it just does not make sense. 💔 Thank you!

07/28/2025

Even though I walk through the valley of the shadow of death..

Shadows.. at every door we walk past

Behind one door a little boy takes his last breath, as the cancer floods his veins and stops his heart

Another one, a 7 week old baby girl, life support removed after being shaken to death

Another, a child has their last seizure and never wakes up

Shadows of death.. roaming the halls under fluorescent lights

Haunting parents’ nightmares, jolting awake in a cold sweat, eyes darting to their own baby, only calming with the assurance of each rise and fall of their child’s chest. Will they be next?

Then, the whispers of prayers that pour from the mouth of a desperate mother push against the darkness

The hands of friends reaching out to cover them in a blanket a peace

The tearful pleading of a grandmother in the middle of the night, miles away

The kind eyes of a listening doctor as they put mental puzzles together

Every moment a prayer is spoken, a force of hope becomes a barrier, a wave of light and power to scatter the shadows.

So, even though I walk through the valley of the shadow of death, I will fear no evil.

“The light shines in the darkness, and the darkness has not overcome it.” John 1:5

“I am the light of the world. Anyone who follows me will never walk in the darkness but will have the light of LIFE.” John 8:12

“But you belong to God, my dear children. You have already won a victory over those people, because the Spirit who lives in you is greater than the spirit who lives in the world.”
‭‭1 John‬ ‭4‬:‭4‬

Jemma’s Journey

11/12/2025

10/10/2025

09/11/2025

09/09/2025

08/21/2025

08/21/2025

08/02/2025

08/01/2025

07/31/2025

07/30/2025

07/29/2025

07/28/2025

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