UPDATES can be viewed at:

https://beacons.ai/witten

Update 5/6/25

from Casey:

Everything is oh so complicated right now.

Witten is quite literally a medical mystery and it’s getting so hard to explain what’s going on.

His MRI scan from May 4th shows infarct areas in three spots on his brain (strokes). They are not sure where these are coming from or what damage they have caused, but have an idea that they might be vasospasms that may need stents to fix. He has also started having seizures(like all the time). Currently he is being treated with meds through the central line for left sided heart “failure”, with antibiotics for pneumonia and Staph infection, with meds and constant brain monitoring for seizures, daily X-rays for lung collapse/hole in his lung, still on the vent for breathing… right now he responds to some painful stimuli and opens his eyes briefly when not sedated, but cannot follow commands, can’t feel or move his lower extremities (can’t move right side at all), can move left hand but not on command. This morning he answers one yes/no question by shaking his head but have received zero responses since then….

his next MRI/MRA is scheduled for tomorrow morning to see the progress/swelling of the cavernoma itself, to see if there are any new stroke areas, and to check blood vessels throughout the brain.

We are learning, as the blood clot/cavernoma subsides, that the cavernoma mass may be inoperable after all. Because it is in the brain stem, a procedure to get to could be detrimental… so we will have to weigh our options when the time comes to operate.

It’s going to come down to how well he recovers now… will he have a better life for a few years until it bleeds again (because it WILL bleed again) or is he already so badly affected by it that operating couldn’t make it any worse.

At this point, only time will tell how recovery will go and if more issues arrive in the meantime.

I hope I explained that properly and I honestly dont mind answering any other questions.

Unfortunately cavernomas are extremely rare and brain stem cavernomas are even more rare than that… there is also no data to show how to treat them or how they will affect the body. And we are unfortunately finding out the hard way…

Update: 5/5/25 

Update from Casey:

I know it’s been a little while since I’ve updated, but unfortunately, the events of Friday night set us back by a ton. After he was re-intubated and everything settled down, we were able to start seeing what damage was done. Chest x-ray revealed air around the lungs and a small hole in the lung making it hard to keep oxygen levels stable. They had to set his vent to the highest level possible and he was still sating in the low 80s. This meant he was unable to down to MRI until he was stable enough for a travel vent. So we were unable to tell if there was additional damage to the brain. In the meantime, an echo of his heart revealed air around his heart had caused stress and abnormalities and he would need a specialized central line to deliver meds directly to the heart muscle. He started running fever and developed infection so he started antibiotics. Finally, last night we got an MRI and it shows no new bleeding, fluid or pressure (Thank God!). But somehow, he has been off sedation for 48 hours and will not interact. He will open his eyes but doesn’t look towards anyone/anything. He move his arms and legs but not on command and not deliberately. Please, take a moment a pray my baby wakes up and comes back to me. At this time, I’ll take a simple look in my direction but momma needs lovin from her baby boy and I can’t stand the idea of never seeing those little arms reach out for me again. Please please pray. Thank you. Surgery is still in the future.. but for now, his brain need to heal some more and he needs to be intact neurologically as least to baseline… just to see where he is.

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Friday 5/2225

Witten had a rough rough night.. Around 3pm, after a good angiogram showed no active bleeding and Witten following commands, the ICU doctor opted to extubate. However, around 8pm he was struggling to breathe, complaining of heart pain and sweating profusely. It was around 1am when they FINALLY decided to re-intubate and everything took a turn for the worse… the doctor put his breathing tube in, had it in the wrong spot, hooked it up to a forceful air vent and quickly pumped air into his little body. Since it was in the wrong spot, his face, eyes, chest, arms and back ballooned up. They shut the vent off and quickly put the tube in the correct spot. In all of that there’s no telling how long his little brain went without oxygen. He now has the tube back in but remains too unstable to be taken down for an MRI. They are currently trying to stabilize him enough for scans but his heart rate is incredibly high, BP high, and the vent is having to be set at an incredibly high rate just to keep him sating in the low 90s. Essentially, the doctor made a massive mistake and it caused detrimental backslide. I pray it didn’t cause any damage to his already fragile brain but unfortunately, we won’t know until he’s stable enough to make it to MRI, which apparently won’t be for a few days.

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Witten is a first grader at North Ridge Elementary in the Frenship school district. He loves sports and is active in all of them. This last week all of that changed! In a blink of an eye, this family’s world turned upside down!!!!

My name is Jerri Beth Dunlap and I’m a close friend and neighbor to this sweet family! This little 6 year old boy is struggling and his Mother Casey Daniel and his Grandparents Shannon and Curtis Kirkham need your help!! The amount of medical bills now and future is overwhelming!! Casey is a single mother of three and understandably is unable to work. The daily life bills, rent, utilities, food etc.. do not stop. Please help them to focus on Witten by contributing. I will continue to update daily! Thank you all in advance. Please lift them all up in your prayers!

Witten Update: from Casey - 5/1/25

I am overwhelmed by the massive amount of love and support I have received for my baby boy. We are learning so much about this cavernoma and after another MRI, Dr. Nagy has decided that he is ready to remove it. Tomorrow morning Witten will undergo a craniotomy to remove the tumor and blood clot in his brain. New MRI shows a clear path to the tumor that will hopefully be the least amount of harm/defects post-op. He has a strong team of doctors, nurses, techs, neuro monitors and more and I’m SO confident in all of their abilities. Now, the real fight begins

Witten Update:

My angel baby, Witten Shane..

Last night was rough. He was agitated and confused. Didn’t know where he was and couldn’t get comfortable. This morning around 5am, he could no longer respond to commands or answer questions at all. He coded around 6am. An emergent CT shows the bleed has not progressed and the clot has softened. The steroids are doing their job. The official plan is to stay on the vent and continue the steroids for as long as his body will tolerate it (most likely 2-3 days) and then do the procedure here in Lubbock with Dr. Nagy, Dr. Baronia and possibly Dr. Scranton as well. The longer he can safely stay on the steroids, the safer and easier the procedure will be.

Witten Update:

MRI results show a cavernoma with a slow, active bleed directly on the brain stem. However, we had a rapid decline over night and Witten can no longer swallow or sit up. We just rolled to ICU and they are intubating him to protect his airway while doctors determine how they want to approach the bleed/tumor. Unfortunately, since it’s pushing directly on the brain stem evacuating the bleed/tumor too quickly could create problems. Dr. Nagy is consulting with surgeons in Houston and they are putting their heads together to figure out the best course of action(he may be transferred there). In the meantime, Dr. Windisch, here in Lubbock, is going to perform an angiogram to try and slow the bleeding.

On 4/28/25 Witten Shane was admitted to the hospital for dizziness, headaches, fatigue, eye rolling, among other things. While he did test positive for Flu, CT scan in the ER showed a concerning mass on his brain. Neurosurgery explained that it looks more like a "cavernous mass" than a tumor. Meaning a group of blood vessels that are ballooning and about to burst. They were thinking the swelling may be pressing on the tissues where spinal cord meets the cerebellum causing the gait issues, dizziness, eye rolling etc. We are now waiting for an MRI.

We are welcoming all prayers right now. Thank you to everyone who has reached out and I will continue to update when I can. Casey