We, his family, have coordinated with OHSU (Oregon Health and Science University) to create a web page for people to make donations in Alex’s name. The donations will go to the Adolescent and Young Adult Oncology Program at the OHSU Knight Cancer Institute. This program provided Alex with the majority of his care. The medical staff there were truly compassionate, dedicated, and knowledgeable at every step of the way in his treatment. It would mean a lot to us if you would consider donating. Alex thought it would be a nice idea because of how supportive they were. Donating to this program will directly aid in cancer research and to care for and improve the lives of other people battling cancer.
Again, we can’t express how much everyone’s support has meant to Alex and our family. It is a comfort to see how much Alex is loved and appreciated. Thank you.
Donate to OHSU (select the “Tribute Gifts” check box, select “In Memory of”, then fill in “Alex Mills” below on the form.)
Register for Be The Match
Alex expressed a wish to have people sign up for Be The Match Registry. Signing up means volunteering to be listed as a potential blood stem cell donor, ready to save the life of any patient in need of a transplant. It’s really easy. It would mean a lot to him and us if you joined.
People have been asking where to donate money in his name. We’re working on getting that information to all of you; we’ll have specifics in a few days.
We can’t thank everyone enough for all of the support.
Alex was with his family when he passed peacefully earlier today, Wednesday, February 27th. We would like to thank everyone across the globe for their love and support. It meant a lot to us and Alex to hear from so many people. He really enjoyed reading all of the comments, letters, and cards.
We’re so grateful for the time we had with him. He will be missed.
Despite my best efforts over the past two and a half years, the leukemia has won. Due to liver inflammation and GvHD, the liver is too damaged to continue with treatment and there are no further options. I don’t want to spend the rest of my time in the hospital so I am choosing to remain at home where I can be comfortable with family and friends. If you want to read more about my journey through all of this, here are all of my posts with the cancer tag.
Since all of my plugins are open-source, they are free to be forked by reputable authors in the WordPress community. It would mean a lot to have my legacy go on.
I want to thank everyone who has given me moral support through these difficult times. It has meant a lot hearing all of the love and support pour in from my friends and colleagues from around the world. I have been so grateful for all of the opportunities that have been given to me in my life, professionally and personally. Automatticians have really helped me grow professionally by giving me an amazing career for the past nine years. My car friends have helped me grow socially and provided me so many good memories and life experiences. The people that I have gotten to know in the WordPress community have been very supportive as well. I am amazed by how many friends I have made and how much they have been there for me. They all have enriched my life and helped me grow as a person.
Thank you, everyone.
Lots to report on today. Some of it is pretty bad.
Back on January 24th, I got a bone marrow biopsy in order to more accurately determine the amount of leukemia present in me. The blood test I normally get is a genetic one and trends behind the actual bone marrow. The blood test had been showing a fraction of a percent and then later 3%. That was obviously trending in the wrong direction but the hope was increasing my special medication would keep things in check. It didn’t.
The bone marrow biopsy came back at a spotty 20% (amounts varied by area). This is not good at all as it means the leukemia has morphed into yet some other form that my donor immune system is having trouble keeping in check, either due to a change or being overwhelmed.
Complicating matters is that my liver is quite inflamed, presumably due to GvHD. However my oncologist wants to be actually sure that this is the cause so I’ll be getting a liver biopsy on Wednesday to confirm. The problem with my liver being inflamed is that it excludes me from many of the potential cancer treatments that I could be getting so we need to get that under control.
If all of that wasn’t enough, I also got a Group B Strep infection in my leg from the knee down. It was and is still swollen which wasn’t entirely unusual due to all of the crap I’m going through, but it got so swollen that it was extremely painful and I couldn’t walk. I ended up having to get admitted to the hospital for IV antibiotics from January 24th to the 26th. I’m still swollen, especially my ankles and feet, but I can walk without pain again thankfully. I do get incredibly winded when I exert myself, but that’s yet a whole other issue.
But back to the cancer. They aren’t quite sure what the plan is from here, be it chemotherapy or something else. Whatever it will be though, I’m along for the ride. There’s nothing I can personally do about it, so why worry about it much?
My oncologist did mention that if at any point I want to just stop treatment and make myself comfortable, that I should let them know as they won’t keep asking. I have zero intention of going that route, but it’s a scary situation to think about. It kind of makes it very real.
Day by day though. Day by day.
Just a quick update on my cancer saga since it’s been over a month since my last update.
My liver continues to be agitated due to my donor immune system attacking it (graft-versus-host disease). As a result, I’m on steroids to suppress my immune system a bit. However as the infusion I was going to go onto makes use of my immune system to fight the cancer, steroids are counteractive to it.
It’s a balancing act of keeping the GvHD and cancer in check.
So I actually never ended up going on the infusion which was great news for me! In previous rounds, it made me feel like complete crap and that was the last thing I wanted for the holidays. Instead my oncologist increased the dose of the anti-cancer medication that I’m on in order to keep the trace amounts of cancer under control. Blood lab tests have been showing that it’s working which is good news.
All this means that I feel pretty normal, except for some weakness if my major muscles due to the steroids. I’m now in a wait-and-see mode where we keep an eye on things and react as needed to any changes.
Whelp, my latest Bcr-Abl blood test came back slightly positive for leukemia again. This means at least another round of the 28 day infusion of specialized medication that makes me feel like absolute crap. Hopefully I’m able to continue to work despite the fatigue.
I also had an appointment with my opthoneurologist (eye doctor) on Thursday. The good news is that my vision hasn’t really gotten worse and no further damage is being done, but the bad news is that the damage was done and it’s permanent. Things aren’t likely to get worse, but they also won’t get better.
Lots of crappy news, but it is what it is I guess. Nothing I can do about it, so not worth worrying about it much.
Last Thursday, October 18th, marked the two year anniversary of my leukemia diagnosis. While I’m finally clear of cancer , I certainly didn’t expect it to take this long. But it’s also weird because it hasn’t seemed that long. My whole life was put on pause and I moved in with my mom. I haven’t slept at my place since being diagnosed and I have barely done any of the things with friends that I would normally do. No summers filled with weekend drives. No autocross with the Viper and Corvette clubs. All of the things that marked the passage of the seasons and time.
Thankfully I’m feeling normal-ish now and can get back to my life somewhat. I’m working and finally hanging out with friends again. Unfortunately due to my vision issues though, I don’t know if I’ll ever be able to be the driver on a spirited drive through the country with friends again. I’m forced to be a passenger which really sucks. The same likely goes for autocross. Hopefully one day they’ll figure out how to repair optic nerves.
Last week I was told the great news that I’m once again cancer free! This marks the third time I’ve heard this news after my initial diagnosis and then my relapse.
The Blinatumomab did its job after two 28 day home infusions, but it made me feel absolutely horrible in the process. Extreme fatigue, nausea, and more. Thankfully pretty much as soon as I was disconnected from it, all of that went away and I’m back to my new normal. I lost a ton of muscle mass during all of this so things like stairs are still hard but I’m getting there.
Additionally I’m in the process of returning to work. My vision issues are still a huge problem however. I have to use larger text and I still haven’t driven since about April.
Still, it feels good to be back to my normal-ish self. Let’s just hope I stay this way this time!
Today marked the completion of my 34th trip around the sun.
I spent the day at home due to fatigue and just generally not feeling great due to this latest IV medication I’m on. One of my sisters was able to make it down from near Seattle though which was a cool surprise!
Here’s hoping my health issues are behind me when 35 rolls around. I certainly didn’t expect to still be dealing with this crap at this point.