UPDATE AS OF 6/5/2025…

Preston’s updates for both wed 6/3 and Thurs 6/4.

Good afternoon everybody happy Wednesday middle of the week. Hope you’re all doing good. Preston doing good. Had a good night. He was with nurse Ali and she said soon after shift start he got agitated because they had to help him go to the bathroom - fair enough bud. so after that, he was finally settled out nicely this morning. he’s with Jenna thank God it’s her last shift with him before we leave so it’s pretty sweet and there have been some tears. She’s amazing. I just have no words for her and jusy everybody really But he’s up in the chair. He’s doing great at the moment. He was sleepy for speech, but he’s up in the chair with his eyes open he’s looking around and OT comes at around 2:15 230 so I will update you on that but so far so good everything is going good. He’s having a good day today and Again as we all know, they mentioned it’s a possibility to go to Duke at the end of the week, but I probably look like early next week so we’re just getting our ducks in a row for everything to happen so praise God he’s so good thanks be to his glory and grace Amen.

So, Becky from OT has just the best voice and just knows how to get Preston’s attention As I was paying attention as best as I could; I was being trained in the vent at the same time OT was going on so…

And, just a side note… the various teams have been so good about trying me on cares for Preston that - by the time we leave for duke - I’ll be considered Preston’s caregiver while at children’s here. Hopefully I can check off on cates at dike to be the same. This means that I can take Preston anywhere I want to in the hospital or outside. And, I can take him to the shower room just him and I so… it’s pretty great as I don’t want to go home with any of this stuff but - knowledge is power so…

Thank you to this team of nurses and specialists for taking the time from your extremely busy schedules to train me on all of these skills. As I will cont to feel just so lucky, humbles and blessed to babe you all on this journey with us.

And, back to PT… Preston was sittting up at the side of the bed and holding himself up most of the time. He was getting tired so we put him back to bed for a nap. We got him up again and he was in the chair until shift change - yes, buddy.

And, wed night sweet-sweet primary night nurse was with Preston and said he was having a good night so far - so great to hear. Buddy.

So, my hopes and prayers cont to be thankful to Our Almighty God Above.

As he’s the One who already knows this journey.

And it is He who cont to lead all of us always and forever… Amen.

And good “late” Thurs evening to you all!

Hope you all had and are still having a good night, too.

So, our sweet-sweet boy did have PT today - I missed it as I’ve been packing and just getting things ready to go to duke.

Well probably leaving either Mon or Tues. And, I’ll find out if I can ride on the medical plane with him or if I’m riding with paul and Paige. We’re all feeling all types of emotions - mostly exciting ones.

So, back to PT…. They said that Preston was showing a lot of sad emotions today. We were blessed to have yet another “dream team” of sweet nurse Lauren and sweet Cna Kayla.

Jayla said that when she took over to hang out with Preston at 11am he was pretty upset - kills me to death but purposeful - I just have to keep remembering that.

So. He really wasn’t having PT soon after that - that’s okay, bud. . Then, when I came in he was still teary but not as upset - Thank You, Jesus.

So, I gave our sweet-sweet boy a mini “spa day” and washed his face, his hair, checked all nails and probably talked his ear off too much. lol

He was awake for me mostly with times of looking around and smiling, too.

When I left for work sweet Cna abbey came on shift and she is definitely one of Preston’s besties - I just love that; Thank You Lord.

So, when I left he was still up in the chair just listening to some of his fav music with abbey so…

I called and talked to sweet nurse Kaitlin tonight and Preston was just chillin in bed about to fall asleep - Thank God!

And, I just can’t help but feel like with all of these purposeful things happening; Preston is coming out of this…. In Jesus’s name…. Amen.

Good morning to our co-workers, friends and family!!!

Well, where do I even begin…

Since Monday, may 7, 2024 all of our lives have been totally and completely turned upside down.

So, on Monday, may 7, 2024, Paul (dad) and I got a call from Preston’s school that he had (2) seizures back to back in gym class. Now mind you, neither side of the family nor Preston has a history of seizures.

I was on my way home from work so I immediately rushed to the school. Paul was on his way from work as well.

When I got to the school Preston was on the ambulance bed being transported to Waukesha memorial hospital (wmh).

We were told that in gym class Preston went to sit down near the dividing curtain in the gym. There, a student noticed his shaking from the waste up. This seizure only lasted like a minute or two. The gym teacher immediately called 911 and then teachers surrounded Preston. He did come to after slightly coherent; but a like 1-2 min later Preston started to seize again this one lasting longer. By this time help was there and have given Preston a med through his nose to stop the 2nd seizure.

So, this is when i got to the school and Preston was being transported to wmh.

I followed the ambulance to the hospital and Paul was on his way there as well. When I got back to see him in the emergency room Preston was having the expected postictal reactions (his movements were ridged and he was grunting). This was so scary for both Paul and I to see.

Preston did finally wake up slowly He was able to talk to us as we were explaining to him what had happened and what was all going on and going to happen.

While at wmh they ran many tests. Specifically ct scans and a lumbar Puncture lp (what used to be called a spinal tap). The cerebral fluid was clear. They did a chest ct and located a mass in his chest.

From these findings, the unexplained seizures and the mass, he was transported to children’s hospital to the 5th floor - oncology/hematology.

So, cont on Monday, may 7, 2024 in the evening we were now at children’s hospital. He had iv’s for fluids and any other med(s) that he may need. But Preston was up walking and talking (worried about his homework - what a student he is), I was his sleep over buddy and Paul was with Paige keeping her safe and healthy. I thank God for dad each and everyday.

While on the 5th floor we met with many dr’s. At this time we were not thinking that the mass in his chest correlated with his seizure activity. So, we were talking to oncology as they mentioned this mass to possibly be called a germ cell Teratoma (please feel free to dr google that at your leisure). So, the next step was to do an eeg on his brain, do another lp and get a biopsy of the mass.

At this point, Preston’s eeg was stable and he hadn’t had anymore seizures. Also, he has gotten an mri and his brain was stable. So, the next step, and at the same time, was to again get another lp and a biopsy of the mass.

On Tuesday, may 8, 2024 Preston was put under general anesthetic (in the morning or afternoon - I’m sorry as I should remember this) to do both of these procedures. He did fine and returned back to the 5th floor. That later afternoon, Preston became confused and his vital signs became dangerous. He was immediately taken to get a ct of his brain and then transferred to icu. Thank God his brain structure was still okay and not harmed.

In icu is where Preston became more and more confused, dilerious and hallucinatory and communicating non-sensibly. Preston was also having more seizures via the eeg and just seeing them in person. The eeg also showed that his brain electricity was very slow. This, again, attributing to that mass in his chest excreting nasty antigens (dr google - please) that his own antibodies were trying to fight off which his brain didn’t like causing inflammation and increased pressure to his brain. After more tests and scans, it was becoming more and more clear that this teratoma mass in his chest was affecting his immune system and brain. Preston was being given meds to keep him as calm as he could be.

On Tuesday, may 14, 2014 the mass was removed. The surgery went better than expected, the mass was slightly attached to some lung flora (again, dr google this please if you wish) but the lung will rejuvenate itself “the body is amazing” and the mass was otherwise easily removed with no damage to his heart - thank God. After surgery, they started a treatment called ivig to replace new antibodies and get rid of the old ones - unfortunately this did not work. They then tried a 2nd treatment called plasma phoresis in which a dyalisis-like line (called a mahurkar) was placed in a major vein on his right clavicle side to receive this treatment Through this line they basically were “cleaning out his blood” and infusing him with new plasma in his blood and flushing out the old Again, with the intent to reduce the spreading of these “bad” antibodies from cont to attack his brain. But, after the recommended (5) treatments of this plasma phoresis we didn’t see much more as results and improvement go so…

At this time, the name of this bad antibody was now given a name Preston suffers from a rare brain injury called NMDA receptor encephalitis. There is both a movie and book about this antibody called “brain on fire” if anyone is interested.

So, they decided to go to the next and 3rd line of treatment which is called rituximab. Briefly, this is a very strong drug that lowers the production of your B cells that helps fight off infection but also attacks those bad antibodies What does mean… if your sick in any way please don’t come to see Preston His immune system is currently compromised and he needs to stay as healthy as possible This treatment is a 2-dose treatment he received his first dose last week and the 2nd dose will be repeated next week (1st dose bring 14 days apart from the 2nd dose).

Today is Monday, may 27, 2024. Tomorrow will be 3 weeks since this extremely difficult journey started. Preston is still intubated and they are both keeping him comfortable yet trying to ween him off of some of these meds.

Tomorrow we will meet with varies parts of the team to see what our next steps are going forward Then, this week wed or thurs we will all sit down with questions and conversation as to what this journey will cont to look like for us.

What we know is that Preston is in the best place possible that he could ever be right now. We are on a marathon of a journey; not at all a sprint and all that we ask for is positivity-hope-and-prayer.

Thank you all from the bottom of our hearts!

P.S. As of today, 12/29/2024 we are still in the picu at children’s hospital of Milwaukee. we have started the 2nd line of treatment in this disease process in hopes that Preston will wake up more and more each day.