Mar 27, 2021 Latest post:
10 hours ago
The strongest people face the toughest challenges. Dad was diagnosed with aggressive leukemia in early March and we are readying ourselves for a tough battle, but one that we are confident we can win! Now the details...
BACKGROUND: Dad had some routine bloodwork done in Cordova which showed an abnormally low white blood count; reds and platelets were within normal limits, but it spooked the docs enough that they sent him to Anchorage for another round of blood work, which showed the same thing. The hematologist in Anchorage then performed a bone marrow biopsy (which is where blood is made, who knew!). About a week later we got the call that no one ever wants to get...not like we hadn't heard the word "cancer" enough over the last five years anyway. It really took us off guard because, other than one blood count being off, everything else was normal and he felt fine. Regardless, the docs in Anchorage sent him down to Seattle to get care with some of the best oncologists and hematologists in the country at Seattle Cancer Care Alliance (SCCA) and University of Washington (UW) Medical Center. Within a week of diagnosis mom and dad hoofed it down to Seattle and set up shop in a housing unit affiliated with SCCA. There they sat waiting for another round of labs to doubly confirm the diagnosis and establish a personally-tailored treatment regimen.
THE DIAGNOSIS: HIs specific diagnosis is Acute Myeloid Leukemia (AML) but it technically falls somewhere between myelodisplastic syndrome (MDS) and AML. The difference, as explained to us, depends on how many "blast" cells are present in the bone marrow. Blast cells are immature blood stem cells that SHOULD grow into other blood cells (reds, whites, platelets, etc.), but they don't due to some malfunction at the genetic level. The blast cells eventually crowd out the healthy cells which can lead to oxygen deprivation in organs (the reds), infection (the whites), and internal/external bleeding (the blues; just kidding, the platelets). Lower blast counts are attributed to MDS while higher counts are attributed to AML, and MDS can progress into AML. For non-doctors like us they are essentially the same disease and are treated similarly, so we're going with AML.
THE TREATMENT: AML and be a real bear to treat because it is not well understood and there are something like 20 subtypes associated with a number of genetic mutations that all respond differently to treatment. The go-to treatment is chemotherapy and, depending on "risk category," a bone marrow transplant. Risk category is broken into three ranges: favorable, intermediate, and unfavorable. Which category you land in depends on a number of factors such as age, overall health, health history, and what mutations caused the AML to manifest. Dad falls into the intermediate category, for which the docs recommend chemotherapy followed by a bone marrow transplant to minimize the chance of recurrence. Chemotherapy occurs in two stages: "induction" and "consolidation." Induction is meant to induce remission, and consolidation is meant to kill any stragglers left behind while a bone marrow transplant is organized. A person in the "favorable" risk category could be done at this point. For intermediate risk patients seeking a transplant, a third stage, called "conditioning," preps the patient for the transplant and also involves chemotherapy with other treatments such as radiation. Conditioning basically kills what's left of your blood and marrow so the body is ready to accept the donor marrow with less risk of host-graft disease (when your body fights the stuff from someone else's body in any transplant). Dad opted for a very aggressive chemo cocktail (G-CLAM) given his overall health and assumed ability to tolerate it. The induction treatment itself lasts for five days of non-continuous infusion followed by about three weeks of monitoring and blood transfusions as necessary. About a month after induction another bone marrow biopsy is performed to see how the AML responded. Assuming remission at this point he would undergo roughly a week of consolidation chemo every month until a bone marrow transplant is organized. The transplant itself looks very much like an infusion and does not take long, but the monitoring period afterword is around three months given the risks involved. All in, we believe we are looking at 5-6 months minimum before this is behind us. Most if not all of that time will be in Seattle given the risk of infection with a compromised immune system and the near-constant in-and-out of the clinic for blood draws and transfusions.
CONTACT INFO: Mom and dad both have their cell phones and have plenty of time to take calls and read texts! They also get emails. For anyone wishing to send cards, letters, care packages or any other mail the address is:
Don Sjostedt 207 Pontius Ave N Unit 504 Seattle, WA 98109
Please keep in mind that plants and flowers are not permitted in their housing unit! I would also suggest keeping perishables to a minimum. Dad will be in the hospital for 1-2 weeks at a time and neither of them eat much anyway.
DONATIONS: This site is not set up as a fundraising site for dad, and we think we'll be OK money-wise. Any donations made on Caring Bridge go to Caring Bridge which keeps the platform free for users, and are much appreciated! However if you've made or make a donation thinking that it would go to dad then you do have the option of getting a refund.
CLOSING: This will be a tough stretch for us but we are keeping upbeat and optimistic! A huge part of maintaining a good attitude is seeing all of the love and support from our family and friends. The calls, texts, emails, letters, cards, care packages and visits are so humbling and uplifting it's hard to put into words. So thank you all from the bottom of our hearts for the continued support! I will keep this site updated as new developments arise or at least weekly, so stay tuned!
THINGS I'VE LEARNED: This is quite the experience for all of us with a lot of helpful things to take away, for us and others. I plan on sharing some tidbits that others might find helpful in this section as we learn them, things that certainly were not on our minds when we started this adventure.
1) Get yer blood work done as often as your insurance allows and more often if you can! As mentioned way up above there were no obvious indications that anything was wrong with dad. He has blood work done annually and often at the Cordova Health Fair. He didn't have any done in 2020 thanks to COVID, but his white blood counts have historically been on the low end for a few years. If you get blood work done at events such as the Health Fair, be sure to schedule a follow-up with your docs to go over the results. This disease probably would not been caught until he started getting physically sick, and given how aggressive AML is, that would've sucked.