Join Preston's Journey to Health and Healing

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.