I'm baaaack 😬 and it's been an eventful month for the Liversidge family so grab yourself a seat and some coffee maybe. Things have been moving along for Norm on the therapy front and he continues to do PT/OT 3-4x a week as well as speech therapy. He had a walker, but has ditched that now just uses a small cane when he's out and about. Not so much at home, but for when he wants more stability on the sidewalks/road, etc.  Both he and Jenn are anxious for him to get cleared to drive again since she is the only driver which is not an easy task with 2 kids that need to be in different places constantly (and driving him as well to his appts). In order to get cleared to drive the therapists give him a series of tests over the course of a few sessions. When he passes those, there's a handful of paperwork to do and then huzzah back in the drivers seat. They're hoping he's jumped thru these hoops by spring. One thing people always asked me was, "do they have a 2 story house and can he do the stairs".  Yes, naturally they lived in a 1 story house for the last 15 years until they moved in 2021 -ish to a 2 story house🙄. I'm happy to report that about 10 days ago he graduated from the downstairs guest bedroom and is back upstairs because he can slowly but surely go up and down those stairs on his own. 🤘

Over Presidents Weekend they drove to Arizona for one of Emilia's softball tournaments.  Everything was the typical busy weekend of a tournament weekend including a team dinner Friday night.  Jenn noticed that his speech changed for the worse and one side of his face was not symmetrical to the other. Fast forward to her 911 call and spending the next 36 hours in an ER in Gilbert, AZ. Diagnosis 👉 Norm had a TIA which is basically a mini-stroke. TIA's happen when the blood supply to part of your brain is briefly interrupted. He went back to "normal", but in the meantime the hospital was in a complete flurry running a million tests and trying to get their arms around this super complex patient.  Trying to get all of Norm's UCLA doctors connected to the people in the AZ hospital was like an act of congress on a Friday/Saturday. Finally, late Saturday night he was discharged. He and Jenn went back to the hotel and drove home Monday - phew! That whole entire scenario caused us all, but for sure Jenn massive PTSD. Do not recommend. Highly avoid stroke PTSD! 

Norm's had what seems like a ton of follow up appointments with his docs since he's been back here. I feel like I would need a table of contents to recap all of the appts and things they have done in the last 2 weeks. Let's see there was an angiogram on his head and neck, met with Dr. Blanco (ICU Neurologist) for the first time, met with his new primary care doc (again) also to discuss the Arizona TIA drama, has appointments with a cardiologist tomorrow to discuss his high cholesterol. Of course, leave it to Norm not to be on a typical cholesterol drug such a Lipitor. A few days of that prescription and it sent his entire chest and back into a tizzy with a huge red rash everywhere. Yes, allergic to THAT so reportedly the cardiologist can perscribe something super expensive and rare that will do the job of lowering his cholesterol. 

Speaking of other things super rare.... I feel like I need to back up and take a quick trip down memory lane to explain this one. In last weeks Norm was in the UCLA ICU - he was still "sort of" in a coma like he would be awake for 1-2 hours a day then sleeping the rest and still had the trach and was on dialysis. All along the way since the very beginning Norm's blood work was all over the place. You know when you get your annual physical and the blood draw paperwork shows everything normal in the column on the right in black font. Well, not this guy. From the get go, pages and pages of everything was constantly in the red. Jenn and I would try and make heads or tails of it all & it was just disastrous. That seemed to go on for a while until things got better here or there. He had so many infections or other crisis in those first 2 months in the ICU the doctors were just throwing everything at him. But there was always sort of a "we are trying to figure out why XYZ in his blood work isn't back to normal. Maybe this long story even longer, one day towards the tail end of his ICU stay a doctor came in and introduced herself to us as Dr. so and so from hematology/oncology. Immediately I put my phone down as my brain alarm started ringing and looked up at her and was thinking to myself "oh sh*t she just said oncology".  She said she was going to run some tests on Norm to try and get an explanation for his wacky blood work that no one could seem to figure out and would get back to us.  Fast forward to 2 weeks later (maybe more) and she came back with the results that Norm tested positive for a very rare genetic mutation called the Jak2 gene. What is that? It causes uncontrolled blood cell production. So his hemoglobin numbers are sky high. This mutation is also associated with a blood cancer disorder called polycythemia vera - also rare. Norm is 2 for 2 for unusual diagnosis🤦🏼‍♀️! Everyone is googling this right now I'm sure. It causes your bone marrow to make TOO many red blood cells which thickens your blood. It will turn those nice little round cells into elongated ones which is not ideal either. 

As soon as Norm got home in December, the first doctor on his list was an oncologist in Westlake Village, Dr. Ashouri for an official diagnosis/treatment plan. He's seen him a handful of times and will continue to have monthly appts and blood draws with him pretty much forever. In order to manage the polycythemia vera he's on a drug (just a pill) that is technically a chemo drug.  From what we are told - it's really a problem that just has to be managed and it isn't like a typical 'cancer' per se that grows out of control, etc.  It's uncommon for men his age to have this, typically diagnosed around the age of 65+ and by then the life expectancy is short because it's been untreated for god only knows how long - but seeing as how Norm is only 45 and it's being dealt with he should be good. HOWEVER, there are other ways that having super thick blood and way too many platelets can try to kill you ---- A TIA or massive stroke or ruptured aneurysm. See what I did just there? Fulllll circle back to our original problem. 

So Dr. Ashouri is his new best friend and in fact, today Norm saw him and his blood work looked great -- all except for that sneaky hemoglobin.  Dr. Ashouri is anxious to get this under control and so today, next week and the following week Norm will do 3 rounds of phlebotomy to remove a pint of blood from him.  The doc is hoping that will get his numbers in line and then the daily chemo pill will continue to do it's job and manage the polycythemia vera just on a daily basis. I picked up Norm today from his 8am appt because Jenn had to run to one of her appts and he got in the car and I was like seriously Norm? Phlebotomy? He just smiled and laughed. 😂 I think even HE can't believe how high maintenance he is now. 

Anyway, the doc is going to have Norm do some ultrasounds/xrays to make sure there are no blood clots in his legs and they can remove that IVC filter (remember that thing?).  Norm is certainly making up for a lifetime of missed doctors appointments in a such a short period of time. We laugh about it because what else is there to do except for take care of it and be grateful he's still somehow miraculously alive. 

 I don't even have the mental capacity to re-read this and spell check it so pardon any typos! 

Andrea